Alayna's IEP is finalized as of last week, it officially starts this Monday. The assessment results were the hardest part to swallow. We've always known Alayna was delayed, she had 3 years of Kindergarten and no supportive services before this year. Her previous OT said that she'll need an IEP in school especially as she gets older and academic demands become harder. But, to see it all on paper in plain black and white was a little hard. She's scored in the "below average/slow" range almost everywhere, however it was the high part, just barely below average.
Her IEP is going to allow for adaptive PE, extra time on tests, homework, and big projects and a scribe available for big tests (like the state testing). The adaptive PE isn't really an issue right now, but come next year when middle school starts it's definitely going to be a problem. But, that's a hurdle we'll cross when we get there. The PT at the school is great, and is going to observe Alayna's PE class once a month to be sure everything is going well. We're not sure if she'll really need a scribe (which is someone to write down her answers word-for-word), but it's nice to know it's available should she need it. She'll also be getting specialized learning time with the special education teacher each week. We'll have to re-evaluate everything for next school year, but there are some concerns that being in all general ed classes may be too much for her.
Aiden also has an IEP. He's almost always had a stuttering problem. Maybe we should have gotten him into speech therapy for it before now, but we didn't want to make a big deal out of it and he was never bothered by it. Anyways, he's getting 30 minutes of speech therapy every week. The speech therapist at the school is GREAT, and she's been giving me a lot of tips to help him with his spelling as well.
See, Aiden had chronic ear infections from 6 months to 21 months and has a result had about a 75% hearing loss when they finally took his tonsils and adenoid out and put tubes in his ears. This effected his ability to hear things properly, and as such has made it difficult for him to spell. Seriously, that makes me feel like crap. It makes me WISH that I had requested that Aiden get ear vent tubes long before he did. The ENT wanted to get him as close to two as possible as he didn't want to do two surgeries (one for the ear vent tubes and another for the tonsils and adenoid). There's no going back now, so we just have to work on what we can.
We are STILL waiting on Brooklyn's IEP. I'm anticipating a lot of issues there though. She's not having any academic issues or any serious behavioral issues at school. She's still very much withdrawn in the class, but according to her teacher does very well when she's in a small group with just a few other kids and an adult. I think I need to contact the advocacy group I have the information for just in case. The one thing that's on our side here is that she does have a diagnosis of ADHD, which should at the very least qualify her for a 504 plan, as I doubt she'll qualify for an IEP. We're asking for some type of one-on-one or small group teaching everyday, and so far the school has told me no way.
We got in to see her pediatrician at the end of December for her 6 year check up (HOLY CRAP! My baby is almost 6!!) so we'll discuss some more things then. I'm really hoping that the school has their crap together by then so I can run it all by him.
Brooklyn's situation is just unique compared to the average kid with an IEP or 504 plan. She's not delayed anywhere (except socially) she doesn't have ANY poor behavior issues at school. But, I want her to get help socially. I want her to be encouraged, and I seriously want her to freaking LEARN things! She's already passed all of the end of year goals. Hell, she was passed them BEFORE she even started Kindergarten. I just don't want her to end up hating school because she's bored all the time. So, I guess we'll wait and see. I'm hoping they get us in for a meeting before the 18th, otherwise we'll have to wait until January.
Saturday, December 1, 2012
Friday, November 23, 2012
Be thankful for what you have
That's the point of Thanksgiving right? To be thankful for what you have, to enjoy your family. Sometimes we forget about that.
Sometimes I'm stressed: appointments, school, specialists, therapy activities and exercises, homework, housework, etc. It gets to be too much, and then I complain. If only we didn't have that appointment I could do this instead. If only Brooklyn wouldn't have a meltdown I could go to the grocery store, etc.
I have a friend who is pregnant with her second child, a little girl. She's due on Valentine's day. She has a little boy who is almost 6, and he was really looking forward to being a big brother. Early last month her daughter was diagnosed with a fatal neurological defect called Anencephaly. This randomly occurs when the top of the neural tube doesn't close, the top part of the head and majority of the brain fail to form. There is no cure, and no chance of survival. In the most perfect of situations Anencephaly babies live for a few weeks, maybe a couple of months. Most commonly they live minutes to a couple hours after birth, if they aren't born an angel.
This friend is currently in labor to delivery her precious baby angel right now. My heart is broken for her. I know how much she wished for those next few months to feel her little one growing and kicking her in belly. And it makes me think of my kiddos, of how lucky I am to have them. As much as my girls require a lot of care, their disorders/conditions aren't life threatening. My children will be here tomorrow. My friend, she'd probably give anything to be in my situation.
Putting things into perspective... Sometimes we all need a little reminder.
Emilee, Will, and children, you guys are in our prayers. Love to you all.
If you'd like, you can follow Emilee's story at http://babyleilagrace.blogspot.com/
Sometimes I'm stressed: appointments, school, specialists, therapy activities and exercises, homework, housework, etc. It gets to be too much, and then I complain. If only we didn't have that appointment I could do this instead. If only Brooklyn wouldn't have a meltdown I could go to the grocery store, etc.
I have a friend who is pregnant with her second child, a little girl. She's due on Valentine's day. She has a little boy who is almost 6, and he was really looking forward to being a big brother. Early last month her daughter was diagnosed with a fatal neurological defect called Anencephaly. This randomly occurs when the top of the neural tube doesn't close, the top part of the head and majority of the brain fail to form. There is no cure, and no chance of survival. In the most perfect of situations Anencephaly babies live for a few weeks, maybe a couple of months. Most commonly they live minutes to a couple hours after birth, if they aren't born an angel.
This friend is currently in labor to delivery her precious baby angel right now. My heart is broken for her. I know how much she wished for those next few months to feel her little one growing and kicking her in belly. And it makes me think of my kiddos, of how lucky I am to have them. As much as my girls require a lot of care, their disorders/conditions aren't life threatening. My children will be here tomorrow. My friend, she'd probably give anything to be in my situation.
Putting things into perspective... Sometimes we all need a little reminder.
Emilee, Will, and children, you guys are in our prayers. Love to you all.
If you'd like, you can follow Emilee's story at http://babyleilagrace.blogspot.com/
Tuesday, November 20, 2012
The moral dilemma of SSI
Morgan and I are discussing applying for SSI for Alayna. She had it when she was a toddler because of her eyesight, which helped with the process of going to appointments and affording special food due to her developmental delays. She became ineligible because it was not pursued later. There were issues with the need for SSI that we won't go into in this post. Things have changed, and with multiple specialists being sought to make a go at resolving some of the gait and developmental issues it becomes clear that we are less able to afford the cost involved.
But we had struggled with deciding to apply for SSI. And it's a decision many parents struggle with while others just assume as a correct decision.
Our family is pretty conservative. I don't require the government to give me anything, in my opinion. A good example is that, if markets were better and unemployment was lower, many people could probably live without SNAP benefits, or food stamps. Because SNAP revenue generated from low-to-no-income families affects positively on companies like Walmart and, locally, Winco Foods, these companies have higher demand for relatively cheap prices. Thus, they have the potential to increase prices to improve their profit. However, taking away food stamps could lower demand for higher-priced foods, which would drop the cost of those foods to compensate for the market's decline. In essence, the market would adjust, and we could see an overall drop in cost of living. I could probably afford cheap food and survive without food stamps, but it does help to have those available when you really need it, like when you're paying a large percentage of your income to paying back school loans but don't have the employability to afford the added costs.
Note: I am not an economics major, I just took economics in college. Don't quote me or anyone else who analyzes this kind of change, because the modern economy can wield surprising results, as we've seen in almost every standard in the last decade.
SSI is similar, where I don't believe in just getting the extra income because you can. If you live frugally and can afford to do it on your own, you should attempt to do so.
For some, SSI is almost a right, like getting a paycheck for dealing with your disabled child. The connotation can be overwhelming and affect judgement. I have personally known and witnessed families, both in previous jobs and socially, that have used the fact that their kids have some sort of delay or disability to either afford frivolous things or pay their own bills.
I completely acknowledge that having a disabled child has cost involved. I know first hand.
But there are some parents who just apply for SSI to pay their own bills and completely neglect the needs of the child, assuming instead there's nothing to help them and disregarding the potential of beneficial programs from non-profits and the local and state governments. However, I believe this is a minority.
The truth is that there are plenty of reasons to have SSI, some that are not so obvious as affording some sort of monthly nurse aid or similar direct costs. For instance, a child with autism that does not need specialist care but cannot be put in child care due to local childcare options being inadequate or unequipped to meet the attention needs of the child may require the parent to reduce the hours available to work. This would be indirect cost, and would be reasonable facts to support applying for SSI.
However, a child with mental deficiencies that just socially likes their parents and the parent would rather just be at home with the child is not necessarily a reason to ask for SSI. Parental preference, in the arena of public funds, is tough to use as a basis of eligibility. How do you tell two parents that the one who just wants to stay home with the child has the same eligibility as the other who has to stay home for the child's safety?
The moral dilemma stems from whether you're applying for SSI for personal, or personal finance, reasons or if you are going to use the money for your child. It's an honest question that anyone applying for SSI should ask. You may think it's obvious, but there are times that it's tempting to say, "Well, this way I can afford to buy my kid a tablet for education," but really want the tablet for yourself.
The best way to resolve the dilemma is to make sure you have attempted everything you can to afford the things you need for your child, from looking for cheap deals to non-profits who offer local programs, before accepting SSI. You can also verify you would need the SSI as a basis for decisions elsewhere in treatments. You will feel better about your decision and have a better idea of how to use your SSI benefit effectively for your child.
Tuesday, November 13, 2012
Sometimes it's all too much
I had a blog all written, I spent the hour of Brooklyn's therapy on Monday to write it all up. All the new things with the girls, therapy, medication, casts, IEP meetings, etc. But, that's gonna be put on hold for a minute.
The title says it all, sometimes it's all too much.
Therapy appointments, specialists appointments, school, homework, therapy activities and exercises. Sometimes it's enough to make you want to tear your hair out while plotting the quickest route to Mexico so that you can run away.
Please don't get me wrong, I absolutely LOVE my children. I could not imagine my life without them. And I don't just love those happy, wonderful, snuggling, moments. I love the crappy moments too. I may not love them IN the moment, but afterwards I get to thinking, "God chose ME to be their mother. God chose ME to raise them, love them, and meet their needs. If God has that much faith in ME, I should have the faith in Him to know that he made the right choice."
But, I don't always feel that until hours, sometimes even days, after those moments. When Brooklyn's having a meltdown and I can't get through to her, and no one has clean pants for the next day, and all the plates are dirty, and I desperately need to vacuum the living room, and Alayna has homework that needs looking over, and someone needs to make dinner... All I can think is WHY ME? I am SO not equipped for this. God, I cannot be the mom you, and these kids, need me to be. It's too much! I can't do it, and I quit.
I never do actually quit, but I gotta tell you, sometimes a tropical beach ALONE sounds pretty damn good. And, since we're dreaming here, lets add in an unlimited supply of some yummy tropical drink, heavy on the rum.
And my stress doesn't just come from making sure Alayna and Brooklyn have their needs met. I also have to meet the needs of a demanding 4 year old, my sweet sweet Bella-boo, but also my amazing and oh so sensitive Aiden. My poor boy that gets told no for most of the things HE wants to do because I don't have the time or the money to let him. And he's so sweet about it, even though he's disappointed that I had to say no, AGAIN, he understands. How I got so lucky with him I'll never know. I may not say it enough, but I thank God that I was chosen to be his mother. I'm so proud of him and thankful that he is the young man he is.
I've spent the last few weeks worrying about money (Brooklyn turns 6 in 4 weeks, Christmas is coming, gas too and from appointments, etc), stressing about time (12-13 regular monthly appointments, school, keeping up on the house, etc), and otherwise just in a poor mood.
But, tomorrow is another day. And I have 4 of the most amazing people in the world who depend on me for just about everything. So, thank you God for giving me these blessings, and help me to remember how lucky I am to call them my children. Especially when I'm tired, Brooklyn is having a meltdown, Aiden wants to play video games, Bella wants to pick a show on Netflix, Alayna needs homework check and oh so conveniently forgot about a project that's due soon, and dinner needs to be made. Because, Lord, I can promise you, that's about the time I'm going to need that reminder.
The title says it all, sometimes it's all too much.
Therapy appointments, specialists appointments, school, homework, therapy activities and exercises. Sometimes it's enough to make you want to tear your hair out while plotting the quickest route to Mexico so that you can run away.
Please don't get me wrong, I absolutely LOVE my children. I could not imagine my life without them. And I don't just love those happy, wonderful, snuggling, moments. I love the crappy moments too. I may not love them IN the moment, but afterwards I get to thinking, "God chose ME to be their mother. God chose ME to raise them, love them, and meet their needs. If God has that much faith in ME, I should have the faith in Him to know that he made the right choice."
But, I don't always feel that until hours, sometimes even days, after those moments. When Brooklyn's having a meltdown and I can't get through to her, and no one has clean pants for the next day, and all the plates are dirty, and I desperately need to vacuum the living room, and Alayna has homework that needs looking over, and someone needs to make dinner... All I can think is WHY ME? I am SO not equipped for this. God, I cannot be the mom you, and these kids, need me to be. It's too much! I can't do it, and I quit.
I never do actually quit, but I gotta tell you, sometimes a tropical beach ALONE sounds pretty damn good. And, since we're dreaming here, lets add in an unlimited supply of some yummy tropical drink, heavy on the rum.
And my stress doesn't just come from making sure Alayna and Brooklyn have their needs met. I also have to meet the needs of a demanding 4 year old, my sweet sweet Bella-boo, but also my amazing and oh so sensitive Aiden. My poor boy that gets told no for most of the things HE wants to do because I don't have the time or the money to let him. And he's so sweet about it, even though he's disappointed that I had to say no, AGAIN, he understands. How I got so lucky with him I'll never know. I may not say it enough, but I thank God that I was chosen to be his mother. I'm so proud of him and thankful that he is the young man he is.
I've spent the last few weeks worrying about money (Brooklyn turns 6 in 4 weeks, Christmas is coming, gas too and from appointments, etc), stressing about time (12-13 regular monthly appointments, school, keeping up on the house, etc), and otherwise just in a poor mood.
But, tomorrow is another day. And I have 4 of the most amazing people in the world who depend on me for just about everything. So, thank you God for giving me these blessings, and help me to remember how lucky I am to call them my children. Especially when I'm tired, Brooklyn is having a meltdown, Aiden wants to play video games, Bella wants to pick a show on Netflix, Alayna needs homework check and oh so conveniently forgot about a project that's due soon, and dinner needs to be made. Because, Lord, I can promise you, that's about the time I'm going to need that reminder.
Thursday, November 1, 2012
Silly time with Asante and Bella
Visiting Whitney's apartment, watching my nephew, Asante, and my niece, Shyla, and we're getting silly. Faces are awesome, though. Silliness comes out of your face.
Wednesday, October 31, 2012
Girlies updates
Alayna
We had originally been told that it would take about 2 months to get Alayna into the gait lab at Shriner's and to get her first set of casts. We were expecting that we'd be able to start PT and work on stretching and then to the casts. Well, last week, the day after our appointment actually, Shriner's called and set up ALL of Alayna's appointments.
Alayna goes in on the 7th to do the 2 hour gait lab, then she'll get molds done of her feet for the AFOs (ankle foot orthotics), lastly they'll stretch her feet and ankles and put the first set of casts on. She goes in the following week to get those casts removed and another set put on. A week later she goes in again to get the second set of casts off and new ones put on. A week later she goes in again to get the final set of casts off and get her AFOs. I'm really hoping for the best with all of this. I'd like to avoid surgery at all costs.
I also found a product called de-rotation straps. http://www.360oandp.com/products/186/SureStep-De-Rotation-Straps.aspx They're supposed to work very well, much like AFOs, and can hide well under clothing. Speak of that, I'm hoping that Alayna's jeans will fit over her casts, but I'm not sure how far up the casts will go and how thick they'll be. I've never had a cast before.
Brooklyn
I'm beginning to think that coming off of all of the medication may not have been the best choice, and that makes me ridiculously sad. I DESPISE giving my daughter medication, but based on the behavior of the last week, I think that some type of medication for the afternoons might be necessary. She's more out of control, even with the OT activities. Joe's taking an extra long lunch on Monday so that he can come to Brooklyn's behavior therapy with me so that we can talk to her therapist. We're also going to see her doctor next Thursday to discuss if maybe a low dose medication might help her out of control behavior at home after school and on weekends.
We did have a break through at therapy this last week. Brooklyn told her behavior therapist that she really misses me when she's at school, that she only gets to be with me all day long on the weekends and everyday used to be like the weekends :( My poor girl. Tomorrow I'm going to start volunteering in all of the kids' classrooms, so hopefully it'll help her get through the school day.
Brooklyn's OT suggested that we may want to look into martial arts lessons for her. The hope here is that it will give her body the proprioception it craves in an environment where she and others are safe; and also hopefully teach her that her aggression is wrong in a way that may work better. One of the biggest rules of martial arts is that you aren't allowed to use the skills to hurt others. So, we've been looking into martial arts studios in the area for her. But now both Aiden and Alayna want to do martial arts as well, LOL. We've found a place that offers one lesson a week for $45 a month or two lessons a week for $85 a month. I'd prefer to do one lesson a week for right now as we currently have enough weekly and bi-weekly appointments right now.
I'd REALLY like to get her into teakwon-do at the community center, but she has to be 7 to go there. The price is great though, $92 for 8 weeks of lessons 2 days a week.
I've also found another program that teacher jujitsu and karate, but it's $77 every 4 weeks. But, she can't go here until she's 6 (which is only a month and 10 days away, EEEKK!) and it's two days a week.
We're going to contact all the programs we've found and talk to them about Brooklyn. We need to be sure that where ever she's going can handle her special needs.
We had originally been told that it would take about 2 months to get Alayna into the gait lab at Shriner's and to get her first set of casts. We were expecting that we'd be able to start PT and work on stretching and then to the casts. Well, last week, the day after our appointment actually, Shriner's called and set up ALL of Alayna's appointments.
Alayna goes in on the 7th to do the 2 hour gait lab, then she'll get molds done of her feet for the AFOs (ankle foot orthotics), lastly they'll stretch her feet and ankles and put the first set of casts on. She goes in the following week to get those casts removed and another set put on. A week later she goes in again to get the second set of casts off and new ones put on. A week later she goes in again to get the final set of casts off and get her AFOs. I'm really hoping for the best with all of this. I'd like to avoid surgery at all costs.
I also found a product called de-rotation straps. http://www.360oandp.com/products/186/SureStep-De-Rotation-Straps.aspx They're supposed to work very well, much like AFOs, and can hide well under clothing. Speak of that, I'm hoping that Alayna's jeans will fit over her casts, but I'm not sure how far up the casts will go and how thick they'll be. I've never had a cast before.
Brooklyn
I'm beginning to think that coming off of all of the medication may not have been the best choice, and that makes me ridiculously sad. I DESPISE giving my daughter medication, but based on the behavior of the last week, I think that some type of medication for the afternoons might be necessary. She's more out of control, even with the OT activities. Joe's taking an extra long lunch on Monday so that he can come to Brooklyn's behavior therapy with me so that we can talk to her therapist. We're also going to see her doctor next Thursday to discuss if maybe a low dose medication might help her out of control behavior at home after school and on weekends.
We did have a break through at therapy this last week. Brooklyn told her behavior therapist that she really misses me when she's at school, that she only gets to be with me all day long on the weekends and everyday used to be like the weekends :( My poor girl. Tomorrow I'm going to start volunteering in all of the kids' classrooms, so hopefully it'll help her get through the school day.
Brooklyn's OT suggested that we may want to look into martial arts lessons for her. The hope here is that it will give her body the proprioception it craves in an environment where she and others are safe; and also hopefully teach her that her aggression is wrong in a way that may work better. One of the biggest rules of martial arts is that you aren't allowed to use the skills to hurt others. So, we've been looking into martial arts studios in the area for her. But now both Aiden and Alayna want to do martial arts as well, LOL. We've found a place that offers one lesson a week for $45 a month or two lessons a week for $85 a month. I'd prefer to do one lesson a week for right now as we currently have enough weekly and bi-weekly appointments right now.
I'd REALLY like to get her into teakwon-do at the community center, but she has to be 7 to go there. The price is great though, $92 for 8 weeks of lessons 2 days a week.
I've also found another program that teacher jujitsu and karate, but it's $77 every 4 weeks. But, she can't go here until she's 6 (which is only a month and 10 days away, EEEKK!) and it's two days a week.
We're going to contact all the programs we've found and talk to them about Brooklyn. We need to be sure that where ever she's going can handle her special needs.
Thursday, October 25, 2012
Feet and legs and school conferences
Today was Alayna's appointment at Shriner's Children's Hospital in Portland, OR. We saw a great orthopedic surgeon who used to be the Chief of Staff at the Honolulu, Hawaii Shriner's hospital. It was a LONG visit. It started with checking in, I of course thought, "I'm not driving, I don't need my purse." Um... Yea, our insurance cards are in my purse. (Joe has fax the cards into the hospital tomorrow.) Thankfully they were really great about that. Joe had to fill out a limited power of attorney form for me to be able to bring Alayna in for any other appointments.
They called us back a bit early, which was great because we arrived a good 30 minutes before our appointment time. They took Alayna's height and weight and all of our papers. The first doctor who came in to see Alayna was a doctor who was studying here in the US from Australia. He was really nice. He asked us about Alayna's life, from birth to now. He pushed, pulled, and prodded her arms and legs checking her range of motion and reflexes. She has little to no reflexes in her arms. After all of that he had Alayna walked up and down the hallway to watch how she walks. She does walk with a heel-toe gait on her right foot most of the time, but her left foot is almost always flat. He also noticed our concerns with her hips.
We went back into the room and waited some more. The nurse who works with the doctor we'll be seeing came in to check on us and explain how everything will work. Since Shriner's in Portland is a teaching hospital we'll end up seeing LOTS of doctors. Around this time we also discovered that Shriner's has a little table with snacks out in the hallway. Coffee, hot water for cocoa and tea, ice water, goldfish crackers, fruit roll ups, crackers, raisins, etc. Bella had all sorts of snacks while we waited, LOL
Finally the doctor came in and did some of the same stretches as the first doctor. She also watched Alayna walk up and down the hallway. She ordered x-rays of Alayna's hips. At that time I took Bella up to the third floor to the Halloween party they were having for the kids at the hospital. Bella got to paint a pumpkin, eat cookies, pick a toy, and play. We headed back down to check on Alayna and walked in on the tail end of a VERY important conversation between the doctors, the physical therapists they brought in, and the nurse.
As far as Alayna's hips are concerned they ARE turned out, at this point the doctors think it would be best to leave them alone though as it's something that Alayna can live with. With her muscles, ankles, and feet we have three options; treatment depends on our goals. Prior to any treatment they want Alayna to go in for a gait lab, which basically means they're going to record her walking and running to determine how to best help her. On to the options.
Option 1. Leave them alone and find a way to help Alayna work around it; however people who have the same problems as Alayna tend to have a lot of problems with walking, running, and tiring quickly (which Alayna does have trouble with).
Option 2. Is to do casting. Alayna will go in for casts to be placed on both feet and ankles. They will stretch Alayna's muscles out and then put the casts on. Alayna will have the walking boot over the casts. The goal of the casts is to stretch her muscles little by little. She will wear the set of casts for 10-14 days at which point we'll go back up to the hospital and get the casts off. They'll stretch her ankles and feet again and then put on new casts. We'll do this for about 6 weeks. At which point Alayna will get braces to continue the stretching.
Option 3 (which no one is really fond of) is surgery. The surgery to loosen her muscles to allow her to walk flat on her feet would take about an hour and she'd go home later that day. The surgery to turn her feet in the way they should be would be about 3-4 hours. It would require a 3-4 day hospital stay, and Alayna would leave the hospital using a walker.
In the event that option 2 doesn't work, we may still end up with option 3.
Joe and I have decided that we're going to go with option 2. Obviously we're working our tails off to meet Alayna's needs so we don't really like option 1 at all, and option 3 seems to be REALLY invasive, especially considering that we have another option.
Shriner's is going to call us to schedule the gait lab. That'll be a good 2 hours, after the gait lab Alayna will get her first set of casts. We aren't sure how far out that will be scheduled, but the doctor said it could be up to 2 months. The plus side to that is we'll have established physical therapy at that point and it'll give us a couple months to see how regular PT and follow through of exercises will work in helping Alayna.
OK, onto school conferences.
Brooklyn:
OK, so Brooklyn did NOT tell anyone about what happened to her face. I've spoken with everyone possible about it. Miss Karla said she does talk to Brooklyn almost every day, but that Brooklyn did not come to her.
Brooklyn still rarely speaks in class. She has show some GREAT reading skills and excellent math skills. Her writing skills... Not so hot. She can write ALL of her letters upper and lower case. When it's writing time the kids draw pictures and then write a bit about what their pictures are about. Brooklyn just writes her alphabet (upper and lower case) along the bottom of her picture. We discussed how Brooklyn can write words at home, but generally asks us what words she should spell first. So, her teacher said she could start doing that with Brooklyn when she draws.
I feel better about Brooklyn's teacher after today's meeting. I'm still not 100% about her, but I definitely feel better about her. We're still working towards an IEP for Brooklyn. I'm a bit frustrated that it's taken so long, especially after they have been so great at getting Alayna's done so quickly.
Aiden:
Aiden is doing great. His teacher had a LOT of great things to say about him :) He has EXCELLENT math skills, although he still needs to focus on memorizing his multiplication facts (which is where he and his class are right now). His teacher said that she's confident that she can put anything possible in front of Aiden to read and she knows that he could read it and understand it. His writing is still a struggle, but we're working on that both at home and at school. He's going to start speech therapy at school with the speech therapist for the stuttering. He hasn't out grown it and it's getting in his way of reading aloud.
Alayna:
There's never anything bad to say about Alayna :) Her teacher had each of the kids make their own goals with math, reading, and other. Alayna's goals are: to get better at geometry, have better fluency in reading, and to get better at making friends. We decided to keep those goals, but just amend the friend one to "make at least one good friend". We also agreed on how we would help Alayna meet those goals both in the classroom and at home.
Alayna's mom also showed up at the conference, so that was great. We were able to talk to her about the options we were given at Shriner's and the contacts that Alayna's eye doctor prescribed. She agrees with us that casts would be the best option and that we should try the contacts.
We are FINALLY home, dinner is done, homework is done, and I am ready to crash!
They called us back a bit early, which was great because we arrived a good 30 minutes before our appointment time. They took Alayna's height and weight and all of our papers. The first doctor who came in to see Alayna was a doctor who was studying here in the US from Australia. He was really nice. He asked us about Alayna's life, from birth to now. He pushed, pulled, and prodded her arms and legs checking her range of motion and reflexes. She has little to no reflexes in her arms. After all of that he had Alayna walked up and down the hallway to watch how she walks. She does walk with a heel-toe gait on her right foot most of the time, but her left foot is almost always flat. He also noticed our concerns with her hips.
We went back into the room and waited some more. The nurse who works with the doctor we'll be seeing came in to check on us and explain how everything will work. Since Shriner's in Portland is a teaching hospital we'll end up seeing LOTS of doctors. Around this time we also discovered that Shriner's has a little table with snacks out in the hallway. Coffee, hot water for cocoa and tea, ice water, goldfish crackers, fruit roll ups, crackers, raisins, etc. Bella had all sorts of snacks while we waited, LOL
Finally the doctor came in and did some of the same stretches as the first doctor. She also watched Alayna walk up and down the hallway. She ordered x-rays of Alayna's hips. At that time I took Bella up to the third floor to the Halloween party they were having for the kids at the hospital. Bella got to paint a pumpkin, eat cookies, pick a toy, and play. We headed back down to check on Alayna and walked in on the tail end of a VERY important conversation between the doctors, the physical therapists they brought in, and the nurse.
As far as Alayna's hips are concerned they ARE turned out, at this point the doctors think it would be best to leave them alone though as it's something that Alayna can live with. With her muscles, ankles, and feet we have three options; treatment depends on our goals. Prior to any treatment they want Alayna to go in for a gait lab, which basically means they're going to record her walking and running to determine how to best help her. On to the options.
Option 1. Leave them alone and find a way to help Alayna work around it; however people who have the same problems as Alayna tend to have a lot of problems with walking, running, and tiring quickly (which Alayna does have trouble with).
Option 2. Is to do casting. Alayna will go in for casts to be placed on both feet and ankles. They will stretch Alayna's muscles out and then put the casts on. Alayna will have the walking boot over the casts. The goal of the casts is to stretch her muscles little by little. She will wear the set of casts for 10-14 days at which point we'll go back up to the hospital and get the casts off. They'll stretch her ankles and feet again and then put on new casts. We'll do this for about 6 weeks. At which point Alayna will get braces to continue the stretching.
Option 3 (which no one is really fond of) is surgery. The surgery to loosen her muscles to allow her to walk flat on her feet would take about an hour and she'd go home later that day. The surgery to turn her feet in the way they should be would be about 3-4 hours. It would require a 3-4 day hospital stay, and Alayna would leave the hospital using a walker.
In the event that option 2 doesn't work, we may still end up with option 3.
Joe and I have decided that we're going to go with option 2. Obviously we're working our tails off to meet Alayna's needs so we don't really like option 1 at all, and option 3 seems to be REALLY invasive, especially considering that we have another option.
Shriner's is going to call us to schedule the gait lab. That'll be a good 2 hours, after the gait lab Alayna will get her first set of casts. We aren't sure how far out that will be scheduled, but the doctor said it could be up to 2 months. The plus side to that is we'll have established physical therapy at that point and it'll give us a couple months to see how regular PT and follow through of exercises will work in helping Alayna.
OK, onto school conferences.
Brooklyn:
OK, so Brooklyn did NOT tell anyone about what happened to her face. I've spoken with everyone possible about it. Miss Karla said she does talk to Brooklyn almost every day, but that Brooklyn did not come to her.
Brooklyn still rarely speaks in class. She has show some GREAT reading skills and excellent math skills. Her writing skills... Not so hot. She can write ALL of her letters upper and lower case. When it's writing time the kids draw pictures and then write a bit about what their pictures are about. Brooklyn just writes her alphabet (upper and lower case) along the bottom of her picture. We discussed how Brooklyn can write words at home, but generally asks us what words she should spell first. So, her teacher said she could start doing that with Brooklyn when she draws.
I feel better about Brooklyn's teacher after today's meeting. I'm still not 100% about her, but I definitely feel better about her. We're still working towards an IEP for Brooklyn. I'm a bit frustrated that it's taken so long, especially after they have been so great at getting Alayna's done so quickly.
Aiden:
Aiden is doing great. His teacher had a LOT of great things to say about him :) He has EXCELLENT math skills, although he still needs to focus on memorizing his multiplication facts (which is where he and his class are right now). His teacher said that she's confident that she can put anything possible in front of Aiden to read and she knows that he could read it and understand it. His writing is still a struggle, but we're working on that both at home and at school. He's going to start speech therapy at school with the speech therapist for the stuttering. He hasn't out grown it and it's getting in his way of reading aloud.
Alayna:
There's never anything bad to say about Alayna :) Her teacher had each of the kids make their own goals with math, reading, and other. Alayna's goals are: to get better at geometry, have better fluency in reading, and to get better at making friends. We decided to keep those goals, but just amend the friend one to "make at least one good friend". We also agreed on how we would help Alayna meet those goals both in the classroom and at home.
Alayna's mom also showed up at the conference, so that was great. We were able to talk to her about the options we were given at Shriner's and the contacts that Alayna's eye doctor prescribed. She agrees with us that casts would be the best option and that we should try the contacts.
We are FINALLY home, dinner is done, homework is done, and I am ready to crash!
Wednesday, October 24, 2012
Timing is everything
We have a problem at our house, getting Alayna to complete anything in a decent time frame. It takes her an hour to shower and get dressed. It takes her 20 minutes to use the bathroom. Everything she does is VERY slow and methodical. I don't know how much of the issue is just her, how much is laziness, how much of it is learned behavior, or how much of it is cognitive abilities.
We've been working on a good routine for everything (a morning routine, a homework routine, a bathing routine, a bedtime routine, etc) in the hopes that it'll help her get things done in a timely manner since she officially moved home. It doesn't seem to be working.
Here's the biggest issue: not only does she do everything very slowly, she also doesn't do them very well. Again, how much of that is learned behavior versus ability versus laziness I don't know. I'm not comfortable punishing her for something that may be out of her control. So, we are continuing to try to find a way to help her.
Right now we have check lists up of what she needs to do and how she needs to do it. They don't seem to be working on their own though. She does well if she's being monitored throughout the process, but if it's left up to her, she doesn't do well.
So, how to find a way to help without having to walk around behind her 24/7. The OT that evaluated her suggested a count down timer/clock thingy. This to be exact: http://www.amazon.com/Time-Timer-LLC-TT2-Audible/dp/B0019FHX6Y/ref=pd_sim_k_2 But, I wanted something different, so I was looking at this:
http://www.amazon.com/Learning-Resources-LER6900-Programmable-Electronic/dp/B0007DHU0S/ref=pd_sbs_t_8
The second one looks AWESOME and perfect, however, 80% of the reviews are horrible :( So, I was looking for other similar options. None offer both a color change, noise, AND visual count down timer. Back to option number 1 I guess.
The clock timer (which was the exact one that the OT suggested) DOES have a beep at the end, not sure how loud it is though. I've found another one that I like, it makes noise and flashes different colors (green, yellow, and red) and beeps at the end, BUT that one doesn't have a visual timer. Unfortunately it's also made by the same company that makes the one above that has so many horrible reviews :( This is the link to that one: http://www.amazon.com/Learning-Resources-Time-Tracker-Mini/dp/B004DJ373G/ref=cm_cr_pr_product_top
I'm also going to make a more strict schedule and routine. Alayna does really well if she has a routine, but we still need to monitor her. So, that's the plan.
Also, I LOVE our OT. The same OT that seems Brooklyn twice a month evaluated Alayna. Hopefully here soon we'll get the letter from the insurance saying they approve OT and we'll be able to schedule Alayna's visits (we're also waiting on them to approve PT). I've already talked to our OT about wanting to schedule Alayna with her as well. Today we talked a bit about Alayna and she said that she's already thinking of some ideas to help her :) LOVE our OT!!
We've been working on a good routine for everything (a morning routine, a homework routine, a bathing routine, a bedtime routine, etc) in the hopes that it'll help her get things done in a timely manner since she officially moved home. It doesn't seem to be working.
Here's the biggest issue: not only does she do everything very slowly, she also doesn't do them very well. Again, how much of that is learned behavior versus ability versus laziness I don't know. I'm not comfortable punishing her for something that may be out of her control. So, we are continuing to try to find a way to help her.
Right now we have check lists up of what she needs to do and how she needs to do it. They don't seem to be working on their own though. She does well if she's being monitored throughout the process, but if it's left up to her, she doesn't do well.
So, how to find a way to help without having to walk around behind her 24/7. The OT that evaluated her suggested a count down timer/clock thingy. This to be exact: http://www.amazon.com/Time-Timer-LLC-TT2-Audible/dp/B0019FHX6Y/ref=pd_sim_k_2 But, I wanted something different, so I was looking at this:
http://www.amazon.com/Learning-Resources-LER6900-Programmable-Electronic/dp/B0007DHU0S/ref=pd_sbs_t_8
The second one looks AWESOME and perfect, however, 80% of the reviews are horrible :( So, I was looking for other similar options. None offer both a color change, noise, AND visual count down timer. Back to option number 1 I guess.
The clock timer (which was the exact one that the OT suggested) DOES have a beep at the end, not sure how loud it is though. I've found another one that I like, it makes noise and flashes different colors (green, yellow, and red) and beeps at the end, BUT that one doesn't have a visual timer. Unfortunately it's also made by the same company that makes the one above that has so many horrible reviews :( This is the link to that one: http://www.amazon.com/Learning-Resources-Time-Tracker-Mini/dp/B004DJ373G/ref=cm_cr_pr_product_top
I'm also going to make a more strict schedule and routine. Alayna does really well if she has a routine, but we still need to monitor her. So, that's the plan.
Also, I LOVE our OT. The same OT that seems Brooklyn twice a month evaluated Alayna. Hopefully here soon we'll get the letter from the insurance saying they approve OT and we'll be able to schedule Alayna's visits (we're also waiting on them to approve PT). I've already talked to our OT about wanting to schedule Alayna with her as well. Today we talked a bit about Alayna and she said that she's already thinking of some ideas to help her :) LOVE our OT!!
School and Brooklyn
Yesterday my girl came home from school with what looked like a scratch from a fork on her face. It was 3 lines one on top of the other, each about an inch long across her face. I instantly ask her what happened to her face, she says, "I don't know." I keep asking leading questions: Did you get hurt at school? Did someone scratch you with a fork? Did you get hurt in the classroom? Did you get hurt at recess? Every answer was "I don't know". I kept coming back to the questions and I finally got it out of her that it happened at recess. A couple hours later I find out she got hit in the face with a stick at recess. An hour or so after that I find out that Lincoln, a kid in another classroom, hit her in the face with a stick at recess and that she told the recess duty and that Lincoln was sent in from recess.
I ask her if she told HER teacher, and she says, "Yes, I told Mrs. Lind." OK great. The teacher knows. I think, "Duh, why didn't I think of it earlier! They probably sent a note home!" I usually only check Brooklyn's backpack on Fridays, as that is the only day they send anything home with her. I look, NOTHING! Well, now I'm starting to get a bit mad. My girl was hit in the face with a stick, the marks are VERY obvious to anyone looking AT her, and there's no note.
See, a couple weeks into school Brooklyn accidentally scratched another kid with her pencil. Brooklyn likes to swing things around and was swinging her pencil around (not the safest activity) and scratched a boy on the leg. The teacher asked Brooklyn and the boy what happened, Brooklyn clammed up and refused to talk (this is pretty typical). Because the teacher couldn't find out if it was on purpose or an accident Brooklyn lost half of her recess. I had gone into school to volunteer at the book fair, and when I went in the teacher saw me and told me about it. BUT, she did it in front of other parents who could hear every word, and I then had to wait an hour (until the end of the day) to talk to Brooklyn about it.
After school I got her from class and we were waiting for the other kids, so I was talking to her about what happened. I was also there when the teacher told the boy's mom what happened, obviously Brooklyn could ALSO hear this as she was standing right next to me. It didn't break the skin, but they cleaned it up and put a bandaid over it. Brooklyn finally said it was an accident, but not she's scared of her teacher because she thinks she's going to be in trouble again. I went up to the teacher with Brooklyn and told her that, the teacher tried to make Brooklyn feel better and said that Brooklyn wasn't in trouble and that tomorrow was a new day.
OK, well, that's kind of a LOT for a simple pencil scratch on the leg. My girl got HIT IN THE FREAKING FACE WITH A STICK AND THIS MORNING THE MARK WAS STILL THERE!! It's reasonable to assume that anyone LOOKING at her would notice THREE 1 inch long raised scratch marks across her face!
Obviously I'm really pissed. I do not tend to think rationally when I'm angry, especially when it's about my children. So, I waited for Joe to get home and we discussed it, I'm still really pissed, and now he's mad too. Again, this isn't because Brooklyn got hurt at school, it happens. Heck, Aiden ran into a pole at school splitting his forehead open requiring a good 8 stitches to put it back together. The issue here is that we should have been contacted in some way to let us know our child was hurt at school. I mean, look at everything the teacher went through to make sure both parents knew about the pencil scratch that didn't even break the skin? It seems pretty obvious to me that it's reasonable to assume that MY child would get the same treatment. Apparently not. I shouldn't have had to ask leading questions for a good 3-4 hours to find out what happened to my child.
So, Joe sent an email, explaining all of this in a much nicer, more appropriate way, and asked for a response from the teacher. This morning we got one. Would you like to read it? Here it is, all ONE sentence: "I was not informed about the incident but will look into it today." Yep, that's ALL she had to say about it. I'm sorry, did you not SEE the mark on her face? Silly me, I assumed that the teacher would LOOK at my child. Plus, Brooklyn says she told her teacher (although I can't know for sure, but it's not very Brooklyn like to lie and when she does it's to try getting out of trouble, not anything like this). The marks are about an inch long and about an inch to an inch and half tall ON HER FACE!!
Here's my problem, I feel like Brooklyn's been written off already by this teacher. She heard she has a kid coming into her classroom with ADHD and made a pre-judgement about her. The teacher has been a teacher for 32 years, she has a LOT of experience teaching and I'm not knocking that. But, every step of the way I've had issues. I try talking to her about Brooklyn, I get brushed off. I try talking to her again about Brooklyn's academic skill sets at home verses what she's doing at school, I get brushed off again AFTER I'm told that it's impossible for Brooklyn to be doing the level of work she's doing at home. Now this?
I'm SERIOUSLY supposed to trust this woman with my child, 6 hours a day, 5 days a week??
OK, so I'm very emotional right now, which really doesn't help. I don't know if I'm over reacting or not. To be honest, I do tend to over react, especially when it comes to my kids. I get into "angry momma bear" mode and kinda get stuck there. Call me crazy, but I expected that the teacher would treat an injury to my child as just as important as an injury to another child. This, coupled with the above mentioned issues of being brushed off by the teacher and I'm LIVID!
We're supposed to have parent teacher conferences tomorrow and I'd like nothing more than to go into the school and DEMAND that my child be moved to another classroom. I don't want to be THAT parent. I'd like to be able to calmly and rationally discuss things... However, that's not generally how I work. I imagine that Joe's going to have to take lead on most of the talking with Brooklyn's teacher. If I don't feel as if my questions and concerns are answered tomorrow, I'm making an appointment to speak with the principal or assistant principal about getting a different teacher.
I ask her if she told HER teacher, and she says, "Yes, I told Mrs. Lind." OK great. The teacher knows. I think, "Duh, why didn't I think of it earlier! They probably sent a note home!" I usually only check Brooklyn's backpack on Fridays, as that is the only day they send anything home with her. I look, NOTHING! Well, now I'm starting to get a bit mad. My girl was hit in the face with a stick, the marks are VERY obvious to anyone looking AT her, and there's no note.
See, a couple weeks into school Brooklyn accidentally scratched another kid with her pencil. Brooklyn likes to swing things around and was swinging her pencil around (not the safest activity) and scratched a boy on the leg. The teacher asked Brooklyn and the boy what happened, Brooklyn clammed up and refused to talk (this is pretty typical). Because the teacher couldn't find out if it was on purpose or an accident Brooklyn lost half of her recess. I had gone into school to volunteer at the book fair, and when I went in the teacher saw me and told me about it. BUT, she did it in front of other parents who could hear every word, and I then had to wait an hour (until the end of the day) to talk to Brooklyn about it.
After school I got her from class and we were waiting for the other kids, so I was talking to her about what happened. I was also there when the teacher told the boy's mom what happened, obviously Brooklyn could ALSO hear this as she was standing right next to me. It didn't break the skin, but they cleaned it up and put a bandaid over it. Brooklyn finally said it was an accident, but not she's scared of her teacher because she thinks she's going to be in trouble again. I went up to the teacher with Brooklyn and told her that, the teacher tried to make Brooklyn feel better and said that Brooklyn wasn't in trouble and that tomorrow was a new day.
OK, well, that's kind of a LOT for a simple pencil scratch on the leg. My girl got HIT IN THE FREAKING FACE WITH A STICK AND THIS MORNING THE MARK WAS STILL THERE!! It's reasonable to assume that anyone LOOKING at her would notice THREE 1 inch long raised scratch marks across her face!
Obviously I'm really pissed. I do not tend to think rationally when I'm angry, especially when it's about my children. So, I waited for Joe to get home and we discussed it, I'm still really pissed, and now he's mad too. Again, this isn't because Brooklyn got hurt at school, it happens. Heck, Aiden ran into a pole at school splitting his forehead open requiring a good 8 stitches to put it back together. The issue here is that we should have been contacted in some way to let us know our child was hurt at school. I mean, look at everything the teacher went through to make sure both parents knew about the pencil scratch that didn't even break the skin? It seems pretty obvious to me that it's reasonable to assume that MY child would get the same treatment. Apparently not. I shouldn't have had to ask leading questions for a good 3-4 hours to find out what happened to my child.
So, Joe sent an email, explaining all of this in a much nicer, more appropriate way, and asked for a response from the teacher. This morning we got one. Would you like to read it? Here it is, all ONE sentence: "I was not informed about the incident but will look into it today." Yep, that's ALL she had to say about it. I'm sorry, did you not SEE the mark on her face? Silly me, I assumed that the teacher would LOOK at my child. Plus, Brooklyn says she told her teacher (although I can't know for sure, but it's not very Brooklyn like to lie and when she does it's to try getting out of trouble, not anything like this). The marks are about an inch long and about an inch to an inch and half tall ON HER FACE!!
Here's my problem, I feel like Brooklyn's been written off already by this teacher. She heard she has a kid coming into her classroom with ADHD and made a pre-judgement about her. The teacher has been a teacher for 32 years, she has a LOT of experience teaching and I'm not knocking that. But, every step of the way I've had issues. I try talking to her about Brooklyn, I get brushed off. I try talking to her again about Brooklyn's academic skill sets at home verses what she's doing at school, I get brushed off again AFTER I'm told that it's impossible for Brooklyn to be doing the level of work she's doing at home. Now this?
I'm SERIOUSLY supposed to trust this woman with my child, 6 hours a day, 5 days a week??
OK, so I'm very emotional right now, which really doesn't help. I don't know if I'm over reacting or not. To be honest, I do tend to over react, especially when it comes to my kids. I get into "angry momma bear" mode and kinda get stuck there. Call me crazy, but I expected that the teacher would treat an injury to my child as just as important as an injury to another child. This, coupled with the above mentioned issues of being brushed off by the teacher and I'm LIVID!
We're supposed to have parent teacher conferences tomorrow and I'd like nothing more than to go into the school and DEMAND that my child be moved to another classroom. I don't want to be THAT parent. I'd like to be able to calmly and rationally discuss things... However, that's not generally how I work. I imagine that Joe's going to have to take lead on most of the talking with Brooklyn's teacher. If I don't feel as if my questions and concerns are answered tomorrow, I'm making an appointment to speak with the principal or assistant principal about getting a different teacher.
Tuesday, October 23, 2012
I have seriously been slacking
So many changes, and no blog updates. OK, here we go.
As of last Thursday October 18th Brooklyn is no longer on ANY ADHD medications. It's been interesting to say the least. It doesn't seem that her school behavior is effected much at all. We have had very little communication with her teacher, and that's VERY upsetting. The school psychologist is GREAT, she's working on collecting information (from her teacher regarding the classroom environment, from the PE teacher regarding that environment, from the music teacher regarding that environment, and the school psychologist is going to observe Brooklyn on the playground). We're hoping to have an initial IEP meeting scheduled soon.
Last Friday we took the kids to a Portland Trailblazers basketball game. That was intense to say the least. Day 2 of no medication and a SUPER stimulating environment. Overall Brooklyn did really well. We had to remind her a LOT to calm down and respect the people around us. Thankfully there was no one in the row behind us (which also happened to be the top row in the entire arena, LOL) so we were able to let her get her wiggles out there. Leaving was the hardest part, we basically had to drag her kicking and screaming the entire way to the car.
The dragging and kicking and screaming seems to be a common way to end things. Every day when she gets off of the bus I have to drag her home kicking and screaming. She wants to be able to swing her backpack and jacket around (not caring about whether or not she hits people) and run in front of everyone. However, there are a LOT of kids getting off of the bus, there's ONE bus for our entire apartment complex. Plus, we live near the back of the complex and the bus stop is at the front of the complex, that leaves a decent walk back to our apartment where she can't just be running around acting however she wants.
I've seen an upswing in aggression at home (she seems more prone to hitting when she gets mad), but we've also been able to find ways to help calm her down. The most commonly used solution? Climbing the walls :)
She also had behavior therapy yesterday, she seemed to do really well there as well. Her new therapist is growing on me, although I still prefer her old therapist. I WISH Cindy hadn't moved, she was amazing, and Brooklyn really bonded with her quickly. Her new therapist isn't bad by any means, but it's taking Brooklyn longer to establish any type of bond. Amanda (her therapist) says that Brooklyn does interact with her when they're in the room together, but when I'm there Brooklyn does very little interaction with Amanda.
Tomorrow is our 2nd OT visit. I'm excited about that. I need to write up my list of questions/concerns/ideas for the OT. I also need to remember to ask the clinic about whether or not they've heard from our insurance about approving PT and OT for Alayna.
I feel confident in saying that I don't think Brooklyn ever had ADHD and that I was right all along when I approached our regular pediatrician about Sensory Processing Disorder. However, I'm not going to remove the ADHD label from Brooklyn just yet. You see, schools here don't consider SPD as a reason to give an IEP or make special accommodations. So as far as the school is concerned she has ADHD and SPD. Hopefully after the IEP meeting we'll be able to push our insurance to give us the Autism evaluation.
As of last Thursday October 18th Brooklyn is no longer on ANY ADHD medications. It's been interesting to say the least. It doesn't seem that her school behavior is effected much at all. We have had very little communication with her teacher, and that's VERY upsetting. The school psychologist is GREAT, she's working on collecting information (from her teacher regarding the classroom environment, from the PE teacher regarding that environment, from the music teacher regarding that environment, and the school psychologist is going to observe Brooklyn on the playground). We're hoping to have an initial IEP meeting scheduled soon.
Last Friday we took the kids to a Portland Trailblazers basketball game. That was intense to say the least. Day 2 of no medication and a SUPER stimulating environment. Overall Brooklyn did really well. We had to remind her a LOT to calm down and respect the people around us. Thankfully there was no one in the row behind us (which also happened to be the top row in the entire arena, LOL) so we were able to let her get her wiggles out there. Leaving was the hardest part, we basically had to drag her kicking and screaming the entire way to the car.
The dragging and kicking and screaming seems to be a common way to end things. Every day when she gets off of the bus I have to drag her home kicking and screaming. She wants to be able to swing her backpack and jacket around (not caring about whether or not she hits people) and run in front of everyone. However, there are a LOT of kids getting off of the bus, there's ONE bus for our entire apartment complex. Plus, we live near the back of the complex and the bus stop is at the front of the complex, that leaves a decent walk back to our apartment where she can't just be running around acting however she wants.
I've seen an upswing in aggression at home (she seems more prone to hitting when she gets mad), but we've also been able to find ways to help calm her down. The most commonly used solution? Climbing the walls :)
This is our entry way, it's just wide enough that Brooklyn is able to "hang" like a bridge between the walls
When she doesn't quite feel like "hanging" between the walls, she does this, she loves being upside down :)
Yesterday (Monday October 22) was Brooklyn's field trip to the pumpkin patch. I was really worried about how she would be, especially with me volunteering to go along. She did AMAZINGLY well. I did my best to watch her interact with her classmates... She really doesn't do that much at all. She preferred to talk to me or no one at all. She did run around and giggle with the other kids, but she didn't actual SPEAK to any of them. It wasn't like she was playing WITH the kids, just NEAR them.
She also had behavior therapy yesterday, she seemed to do really well there as well. Her new therapist is growing on me, although I still prefer her old therapist. I WISH Cindy hadn't moved, she was amazing, and Brooklyn really bonded with her quickly. Her new therapist isn't bad by any means, but it's taking Brooklyn longer to establish any type of bond. Amanda (her therapist) says that Brooklyn does interact with her when they're in the room together, but when I'm there Brooklyn does very little interaction with Amanda.
Tomorrow is our 2nd OT visit. I'm excited about that. I need to write up my list of questions/concerns/ideas for the OT. I also need to remember to ask the clinic about whether or not they've heard from our insurance about approving PT and OT for Alayna.
I feel confident in saying that I don't think Brooklyn ever had ADHD and that I was right all along when I approached our regular pediatrician about Sensory Processing Disorder. However, I'm not going to remove the ADHD label from Brooklyn just yet. You see, schools here don't consider SPD as a reason to give an IEP or make special accommodations. So as far as the school is concerned she has ADHD and SPD. Hopefully after the IEP meeting we'll be able to push our insurance to give us the Autism evaluation.
Monday, October 22, 2012
Brooklyn at the pumpkin patch
Brooklyn had an excellent field trip to the pumpkin patch. It was interesting watching her in that environment. I didn't observe her speaking more than one word at a time to anyone.
Saturday, October 20, 2012
In the nosebleed section
Some pics from our first family Blazer game, courtesy of Dream Big Community Center here in Vancouver, WA. We needed the family time. Brooklyn was way over stimulated, Aiden couldn't focus on the game with his friend Keelen along, and Bella nearly fell asleep at the beginning. But it was all worth it to hear the roar of the crowd, the lights and music. It was even worth our first game being another loss for Oregon's great basketball project.
Thursday, October 18, 2012
Brookie on Starfall
One of the most common sites our young kids are on is starfall.com, an early learning site with phonics, math, social and basic recognition games. I think of it like an interactive version of PBS Kids TV shows, way more so than even PBSKids.org.
She can be on that site for hours, easily. She even spent several minutes moving a person through a maze of shapes using her toes on the keyboard arrow pads. She's so funny.
Wednesday, October 17, 2012
Jenny McCarthy and Autism
So, I am not a Jenny McCarthy fan. I've never been one, and now that I have a child whom I believe is on the Autism spectrum I like her even less. She's so full of judgement and assumptions about other parents of Autistic children. She doesn't offer support or assistance. She says, either you do things like I did and "cure" your Autistic child, or you're just an attention seeking parent who somehow gets your rocks off by parading around your autistic child and getting people to pity you.
These are older articles, but they give you an idea of where this is coming from: http://leftbrainrightbrain.co.uk/2012/06/14/jenny-mccarthy-autism-moms-fall-in-the-the-victim-role-and-they-are-loving-it/
http://www.time.com/time/magazine/article/0,9171,1968100-1,00.html
Really?? REALLY??
I know a LOT of parents who don't see their child as needing a CURE, they don't view their child as being diseased. And to be honest, the average family does NOT have the resources that someone in McCarthy's position does. How many average American families can afford $100,000 a year to send their child to a special school? How many average American families can have their child's stool samples tested at their whim by special labs? The majority of families with special needs children are at the mercy of the insurance company. Evaluation results are passed on to a board of people who then get to decide if they agree or not, having NEVER met your child. I recently went through this with Brooklyn's occupational therapy evaluation. How can you compile my concerns and Brooklyn's delays in a report and expect that a reader of that report will get an accurate view of my child? Especially when I, HER MOTHER, can rarely put Brooklyn into words.
Anyways, there have been suggestions from the scientific and medical community that there is a great chance that McCarthy's son, Evan, never did have Autism at all. That he really had a childhood neurological disorder called Landeau Kleffner Syndrome. See, Evan started having seizures at the age of 2, so severe that he required hospitalization several times. He also showed developmental delays and different when compared to children in his play group. He also had hand flapping and fixation on specific items (all of which would cause a professional to diagnose him as Autistic). However, Landeau Kleffner Syndrome an also result in speech impairment and possible long-term neurological damage. Evan's seizures followed by marked improvement once the seizures are under control are consistent with Landeau Kleffner. There's also the possibility that Evan just had developmental delays and as he got older, and with the right help, he caught up with his peer group.
I'm not going to get into the aspect of whether or not Autism is caused by vaccines, I have my personal beliefs based on the information I have the research I've done. I encourage you to make your opinions the same way. Research things, and don't take some celebrity opinions, look for credible information.
My issue here is how McCarthy treats parents of Autistic children, that somehow they are inferior to her because they haven't been able to "cure" their child's autism. I don't know that there is a cure for Autism, I know that many people have had success with lessening symptoms through a LOT of therapy and hard work. Some have found success with diet changes and strict routines. I couldn't tell you if McCarthy's son was ever truly Autistic. I know that McCarthy, as a mother, knew something was going on with her child. And she fought to get answers, for that I commend her. But, at what point does that give her the right to judge and belittle other parents of Autistic children?
Brooklyn is not diagnosed as having Autism, will that diagnosis ever come? I have no idea. Right now I've seen a LOT of changes in her by really focusing on her SPD. Could that be it? Could SPD be our one big hurdle? It very well could be. But, I still want an Autism evaluation, that's really the only way to know for sure. I need a specialist, someone knowledgeable in Aspergers Syndrome specifically in girls, to evaluate Brooklyn. I don't have the luxury of McCarthy to throw money here or there to get the answers I need. I can't just go up to OHSU and say "hey guys, here's $4,000+, can we schedule this evaluation now?" I am at the mercy of an insurance company that has no idea who Brooklyn is to decide if/when we'll ever get that evaluation. I have spent since November 2010 asking for help. If back in November 2010 our pediatrician had listened to me and sent us to an OT evaluation then we would have found out 21 months earlier that Brooklyn did in fact have Sensory Processing Disorder. But, because a doctor decided he knew my child better than me, we were forced to wait. I could have avoided putting my 4 year old little girl on medication if only I had been listened to!
It's so frustrating to read the crap that comes out of McCarthy's mouth. It's not how the real world works. And if she cared as much about other families, families she claims to want to help, she wouldn't belittle and judge them every step of the way. We are all just parents doing the best we can to help our children. What we need from each other isn't judgement, its support. I am very thankful that I've been able to find some amazing groups on facebook filled with other parents who are going through what we're going through. They're there to listen to me vent on our bad days, cheer on our good days, and offer advice and support whenever it's needed. That is a lesson that Jenny McCarthy needs to learn.
These are older articles, but they give you an idea of where this is coming from: http://leftbrainrightbrain.co.uk/2012/06/14/jenny-mccarthy-autism-moms-fall-in-the-the-victim-role-and-they-are-loving-it/
http://www.time.com/time/magazine/article/0,9171,1968100-1,00.html
Really?? REALLY??
I know a LOT of parents who don't see their child as needing a CURE, they don't view their child as being diseased. And to be honest, the average family does NOT have the resources that someone in McCarthy's position does. How many average American families can afford $100,000 a year to send their child to a special school? How many average American families can have their child's stool samples tested at their whim by special labs? The majority of families with special needs children are at the mercy of the insurance company. Evaluation results are passed on to a board of people who then get to decide if they agree or not, having NEVER met your child. I recently went through this with Brooklyn's occupational therapy evaluation. How can you compile my concerns and Brooklyn's delays in a report and expect that a reader of that report will get an accurate view of my child? Especially when I, HER MOTHER, can rarely put Brooklyn into words.
Anyways, there have been suggestions from the scientific and medical community that there is a great chance that McCarthy's son, Evan, never did have Autism at all. That he really had a childhood neurological disorder called Landeau Kleffner Syndrome. See, Evan started having seizures at the age of 2, so severe that he required hospitalization several times. He also showed developmental delays and different when compared to children in his play group. He also had hand flapping and fixation on specific items (all of which would cause a professional to diagnose him as Autistic). However, Landeau Kleffner Syndrome an also result in speech impairment and possible long-term neurological damage. Evan's seizures followed by marked improvement once the seizures are under control are consistent with Landeau Kleffner. There's also the possibility that Evan just had developmental delays and as he got older, and with the right help, he caught up with his peer group.
I'm not going to get into the aspect of whether or not Autism is caused by vaccines, I have my personal beliefs based on the information I have the research I've done. I encourage you to make your opinions the same way. Research things, and don't take some celebrity opinions, look for credible information.
My issue here is how McCarthy treats parents of Autistic children, that somehow they are inferior to her because they haven't been able to "cure" their child's autism. I don't know that there is a cure for Autism, I know that many people have had success with lessening symptoms through a LOT of therapy and hard work. Some have found success with diet changes and strict routines. I couldn't tell you if McCarthy's son was ever truly Autistic. I know that McCarthy, as a mother, knew something was going on with her child. And she fought to get answers, for that I commend her. But, at what point does that give her the right to judge and belittle other parents of Autistic children?
Brooklyn is not diagnosed as having Autism, will that diagnosis ever come? I have no idea. Right now I've seen a LOT of changes in her by really focusing on her SPD. Could that be it? Could SPD be our one big hurdle? It very well could be. But, I still want an Autism evaluation, that's really the only way to know for sure. I need a specialist, someone knowledgeable in Aspergers Syndrome specifically in girls, to evaluate Brooklyn. I don't have the luxury of McCarthy to throw money here or there to get the answers I need. I can't just go up to OHSU and say "hey guys, here's $4,000+, can we schedule this evaluation now?" I am at the mercy of an insurance company that has no idea who Brooklyn is to decide if/when we'll ever get that evaluation. I have spent since November 2010 asking for help. If back in November 2010 our pediatrician had listened to me and sent us to an OT evaluation then we would have found out 21 months earlier that Brooklyn did in fact have Sensory Processing Disorder. But, because a doctor decided he knew my child better than me, we were forced to wait. I could have avoided putting my 4 year old little girl on medication if only I had been listened to!
It's so frustrating to read the crap that comes out of McCarthy's mouth. It's not how the real world works. And if she cared as much about other families, families she claims to want to help, she wouldn't belittle and judge them every step of the way. We are all just parents doing the best we can to help our children. What we need from each other isn't judgement, its support. I am very thankful that I've been able to find some amazing groups on facebook filled with other parents who are going through what we're going through. They're there to listen to me vent on our bad days, cheer on our good days, and offer advice and support whenever it's needed. That is a lesson that Jenny McCarthy needs to learn.
Monday, October 15, 2012
Alayna's eye appointment
Alayna had her eye doctor's appointment today, and we got a bit of distressing news. Mostly distressing for ME, the crazy one. Her optical nerve in her left eye has an abnormal shape, this could be totally normal, or it could potentially be an early symptom of glaucoma. She also has "speckles" on her lens in her left eye, again this could be total normal OR it could be the first stage of caratracts. Both are VERY common with her disorder :( We're working on getting her old records from the Seattle area so that her new doctor can look at them and determine if these are new developments or not. The doctor seems to feel that it's just the way her eye was made, but I can't help thinking about the worst case scenario. The plus side is that the pressure in both eyes are the same, so if it IS somehow early glaucoma it's VERY early.
If they are new, then it means that Alayna's vision, at least in her left eye, could be at risk. The caratracts aren't as worrisome, as they can be removed. However, the glaucoma is VERY worrisome as there are child with her disorder who have had to have their eyes removed due to really bad glaucoma.
As well, we also found out that her corneal transplants could fail/reject at any time. Any time she gets sick and is fighting off germs she's at a higher risk of also rejecting the corneas. However, she can always have another corneal transplant to save her vision. The doctor's mother-in-law had corneal transplants and they failed after 20 years, thankfully she was able to get another transplant. They also have implants (made-man corneas) that generally have a more successful rate of success.
This is some pretty scary stuff!! The wonders and what ifs about it all. There have been kids with Peter's Plus syndrome who have had severe glaucoma to the point that they've lost their eyes completely.
Alayna's vision in her left eye with her current glasses on is 20/50 compared to 20/30 in her right eye. There are a couple of things we can do to help with that. First, they generally see better results with contacts as opposed to glasses so we're going to try that (we'll see how Alayna does with contacts). If that doesn't work we can get her a stronger prescription. Also, we're going to patch her right eye for 2 hours a day to "teach" the left eye to be more dominate.
Alayna goes back in to see her eye doctor in January, so we'll see what she says then.
Here is some information regarding Peter's Anomaly, http://emedicine.medscape.com/article/1200372-overview#showall Peter's plus is Peter's Anomaly PLUS developmental delays, short limbed dwarfism, and a few other issues. And, some information about Peter's Plus Syndrome, http://www.ncbi.nlm.nih.gov/books/NBK1464/
http://ghr.nlm.nih.gov/condition/peters-plus-syndrome
If they are new, then it means that Alayna's vision, at least in her left eye, could be at risk. The caratracts aren't as worrisome, as they can be removed. However, the glaucoma is VERY worrisome as there are child with her disorder who have had to have their eyes removed due to really bad glaucoma.
As well, we also found out that her corneal transplants could fail/reject at any time. Any time she gets sick and is fighting off germs she's at a higher risk of also rejecting the corneas. However, she can always have another corneal transplant to save her vision. The doctor's mother-in-law had corneal transplants and they failed after 20 years, thankfully she was able to get another transplant. They also have implants (made-man corneas) that generally have a more successful rate of success.
This is some pretty scary stuff!! The wonders and what ifs about it all. There have been kids with Peter's Plus syndrome who have had severe glaucoma to the point that they've lost their eyes completely.
Alayna's vision in her left eye with her current glasses on is 20/50 compared to 20/30 in her right eye. There are a couple of things we can do to help with that. First, they generally see better results with contacts as opposed to glasses so we're going to try that (we'll see how Alayna does with contacts). If that doesn't work we can get her a stronger prescription. Also, we're going to patch her right eye for 2 hours a day to "teach" the left eye to be more dominate.
Alayna goes back in to see her eye doctor in January, so we'll see what she says then.
Here is some information regarding Peter's Anomaly, http://emedicine.medscape.com/article/1200372-overview#showall Peter's plus is Peter's Anomaly PLUS developmental delays, short limbed dwarfism, and a few other issues. And, some information about Peter's Plus Syndrome, http://www.ncbi.nlm.nih.gov/books/NBK1464/
http://ghr.nlm.nih.gov/condition/peters-plus-syndrome
Sunday, October 14, 2012
My course has a facebook group!! YAY! So exciting!! I'm connecting with people all over the world! The coolest part is seeing how other countries teach evolution. All of you from the United States know that it's taught VERY carefully in public schools as to not offend anyone. It's Creationism VS Evolution. Many people are complaining that they didn't sign up for a religions class. I explained to them why for so many in the United States Evolution and Creationism go hand in hand. It's impossible to discuss one without the other.
I have to admit that prior to this first week of lectures I felt the same way. How can I believe in Evolution when it completely contradicts my faith? But you know what? It doesn't really. You can believe in both Evolution and God. I wish more people in the United States would stop getting their panties in a bunch about things like this.
I wish that Evolution had been taught like this in high school!
Coursera.org Part 2
Well, I've finished my first week of class, and I have to say I'm very impressed with the set up. This is my professor, Mohamed Noor, http://fds.duke.edu/db/aas/Biology/noor
So, some of my fears before starting this course were:
1. That I would be totally lost and not have a CLUE what was being taught
2. That the course would be based on atheism (that they would try to disprove the existence of God by proving evolution)
3. That I wouldn't have time to listen to the lectures and complete the quizzes each week
What I've found is that:
1. I'm not lost, everything that has been taught so far is building upon basic high school biology, or was previously addressed in my high school biology classes.
2. The teacher is neither trying to prove or disprove the existence of God. He even brought up examples of biologists who have a strong faith in a religion and explains of biologists who are atheists. Professor Noor stated that the proof of evolution itself neither proves or disproves the existence of God. I've also decided (as prior to this I was unsure) that I believe 100% that the theory of Evolution should be taught in ALL public schools. As well, the theory of evolution does NOT explain HOW or WHY life arose. It also doesn't state that humans evolved from chimpanzees, but that all things alive today evolved from a common ancestor. This doesn't directly disregard Creationism.
3. So far I have had enough time. This may change week to week depending on what we have going on. This week was particularly difficult as we had appointments on two afternoons AND a three day weekend. This next week may also be difficult as all day tomorrow (Monday, we have appointments) and again on Wednesday afternoon we have another appointment.
I'm very excited to see where coursera takes me. I doubt that any of the courses I plan to take will ever be useful in my life as far as employment, but they satisfy my love of learning without the added cost of taking random courses at a local college.
I'm sure that many people will find courses through coursera.org that WILL benefit their employ-ability making them more desirable to potential employees. My husband has found several offered courses that offer certificates that he could use for potential employment.
For me, this is just a way for me to have ME time; something MANY moms neglect. I can't always afford a night out with my girl friends, I can't always afford to go to the salon, or other activities to relax. And to be honest, 95% of the time I'd probably prefer to learn something new.
Keep an eye out for part 3 after mid-terms (around November 19th or so)
So, some of my fears before starting this course were:
1. That I would be totally lost and not have a CLUE what was being taught
2. That the course would be based on atheism (that they would try to disprove the existence of God by proving evolution)
3. That I wouldn't have time to listen to the lectures and complete the quizzes each week
What I've found is that:
1. I'm not lost, everything that has been taught so far is building upon basic high school biology, or was previously addressed in my high school biology classes.
2. The teacher is neither trying to prove or disprove the existence of God. He even brought up examples of biologists who have a strong faith in a religion and explains of biologists who are atheists. Professor Noor stated that the proof of evolution itself neither proves or disproves the existence of God. I've also decided (as prior to this I was unsure) that I believe 100% that the theory of Evolution should be taught in ALL public schools. As well, the theory of evolution does NOT explain HOW or WHY life arose. It also doesn't state that humans evolved from chimpanzees, but that all things alive today evolved from a common ancestor. This doesn't directly disregard Creationism.
3. So far I have had enough time. This may change week to week depending on what we have going on. This week was particularly difficult as we had appointments on two afternoons AND a three day weekend. This next week may also be difficult as all day tomorrow (Monday, we have appointments) and again on Wednesday afternoon we have another appointment.
I'm very excited to see where coursera takes me. I doubt that any of the courses I plan to take will ever be useful in my life as far as employment, but they satisfy my love of learning without the added cost of taking random courses at a local college.
I'm sure that many people will find courses through coursera.org that WILL benefit their employ-ability making them more desirable to potential employees. My husband has found several offered courses that offer certificates that he could use for potential employment.
For me, this is just a way for me to have ME time; something MANY moms neglect. I can't always afford a night out with my girl friends, I can't always afford to go to the salon, or other activities to relax. And to be honest, 95% of the time I'd probably prefer to learn something new.
Keep an eye out for part 3 after mid-terms (around November 19th or so)
Friday, October 12, 2012
Coursera.org, free online college level courses Part 1
Well, just like the title says, Coursera.org is a website that offers free college level courses online. I'm starting my very first course this week, I've chosen Introduction to Genetics and Evolution. My professor works at Duke University. I haven't even had time to watch the first week's lectures. I'm not sure if it was the best idea to add one more thing to my already over-full plate, but I really wanted to do something for me. So much of my time is spent on others.
Now, don't get me wrong; I really do love focusing on my family. I love my husband and I love my kids. But, I don't want to be JUST a wife and mother. I've always enjoyed learning, especially random things that really have no useful basis in my life; coursera works out perfectly for that. However, I've just realized that I've signed myself up for a minimum of 90 minutes of lectures each week, who knows many many minutes/hours of research and reading, one quiz every week, a mid-term, AND a final. The plus side is, if I can earn 80% of better in the class I receive a certificate of completion.
What in the world will I do with a certificate in Introduction to Genetics and Evolution? Absolutely nothing. It's purely for my own enjoyment.
I plan to blog again after I watch the first week's lectures and take the first quiz. I'm signed up for several courses:
Fundamentals of Personal Financial Planning
Introductory Human Physiology
Introduction to Philosophy
Introduction to Sociology
Women and the Civil Rights Movement
The Ancient Greeks
Nutrition, Health, and Lifestyle: Issues and Insights
Why We Need Psychology
Fundamentals of Human Nutrition
Some may end up useful in some way or another; but mostly I just wanted something fun for me to do in what little spare time I have. I'm so focused on the kids, their educations, their appointments (therapy, specialists, checkups, etc) that there really isn't a lot of time left over for me. Well, this week I change that. We'll see how it all works out :)
Now, don't get me wrong; I really do love focusing on my family. I love my husband and I love my kids. But, I don't want to be JUST a wife and mother. I've always enjoyed learning, especially random things that really have no useful basis in my life; coursera works out perfectly for that. However, I've just realized that I've signed myself up for a minimum of 90 minutes of lectures each week, who knows many many minutes/hours of research and reading, one quiz every week, a mid-term, AND a final. The plus side is, if I can earn 80% of better in the class I receive a certificate of completion.
What in the world will I do with a certificate in Introduction to Genetics and Evolution? Absolutely nothing. It's purely for my own enjoyment.
I plan to blog again after I watch the first week's lectures and take the first quiz. I'm signed up for several courses:
Fundamentals of Personal Financial Planning
Introductory Human Physiology
Introduction to Philosophy
Introduction to Sociology
Women and the Civil Rights Movement
The Ancient Greeks
Nutrition, Health, and Lifestyle: Issues and Insights
Why We Need Psychology
Fundamentals of Human Nutrition
Some may end up useful in some way or another; but mostly I just wanted something fun for me to do in what little spare time I have. I'm so focused on the kids, their educations, their appointments (therapy, specialists, checkups, etc) that there really isn't a lot of time left over for me. Well, this week I change that. We'll see how it all works out :)
Thursday, October 11, 2012
Repost: New job for my wife
Morgan and I have been talking about how to make money at home, and came up with some great ideas. I want everyone to know that my wife loves her family and she's dedicated to making something work so we can get more income, like most struggling families. That being said, I am concerned about her motivation to find the time to make this happen for herself. Please help me in encouraging her and letting her know she can do it. I think she needs all the motivation she can get! Have you seen the previous posts about what she has to do everyday? Wow!
For the article I posted about this on my site, please click the link below.
Wednesday, October 10, 2012
Acencephaly and a dear friend
A good friend of mine was recently told that her unborn daughter will not survive long, if at all, out side of the womb. Her daughter has a neurological defect called Anencephaly. 3 weeks ago she found out, through an elective ultrasound that she was having a girl. At her 20 week ultrasound just this week she was given the devastating news.
My heart is broken. My friend has suffered so much loss already in her life. The loss of both of her parents before even reaching adulthood herself, and now this. There are no words of comfort, no actions that can be taken to help her through this. Thankfully Emilee and Will have great friends who love them dearly, and who already share that love with their daughter.
There is no cure, there is no direct cause. Anencephaly just happens. Most often babies are born stillborn, some live for minutes, some for hours, rarely for days, and even more rarely (only 1 case that I've heard about so far) one little girl lived for 3 months.
Here is the blog my friend has started for her beautiful baby girl, Leila Grace. http://babyleilagrace.blogspot.com/
Please pray for Emilee, Will, their sons, and their precious daughter.
My heart is broken. My friend has suffered so much loss already in her life. The loss of both of her parents before even reaching adulthood herself, and now this. There are no words of comfort, no actions that can be taken to help her through this. Thankfully Emilee and Will have great friends who love them dearly, and who already share that love with their daughter.
There is no cure, there is no direct cause. Anencephaly just happens. Most often babies are born stillborn, some live for minutes, some for hours, rarely for days, and even more rarely (only 1 case that I've heard about so far) one little girl lived for 3 months.
Here is the blog my friend has started for her beautiful baby girl, Leila Grace. http://babyleilagrace.blogspot.com/
Please pray for Emilee, Will, their sons, and their precious daughter.
Thursday, October 4, 2012
Updates for the girlies!
Brooklyn: We saw the doctor today. We discussed Aspergers, and he said my notes and research are impressive and will be very helpful for him. We said that he thinks we're doing a great job between the behavior therapy and OT. He wants us to give OT at least a month and see how that effects Brooklyn's behavior.
He also said that he agrees we may want to pull back on the medications. So, we're going to start slowly removing the guanfacine starting tomorrow through next week. On Thursday we're going to touch based with the doctor about how that's going and then discuss how we want to go about backing off on the Adderall. We'll see how she does and if we have any behavior concerns, especially with OT as if the behavior issues are related to the sensory stuff.
He also said that he thinks we should consider an IEP for Brooklyn. Mostly because her being withdrawn in school IS an issue that needs to be addressed. And that the OT at school should be able to help with the twice a month private OT. He suggested that we consider requesting one-on-one teaching for at least an hour a day, and one-on-one reading groups and more very small group activities.
So, that's the plan for now. Still unsure about the Aspergers testing, but if we can rule out ADHD once and for all (which we may be able to do with everything we're working on) we can then push for Asperger's more easily as we've already begun ruling out other things.
Also, the OT who did Alayna's eval (which will be explained below) is the same OT who will be seeing Brooklyn starting next week. This is great because she got to see Brooklyn in action. Brooklyn was completely well behaved in the first half, but went crazy once they went into the gym and Brooklyn could swing, slide, spin, and jump to her heart's content.
OK, onto Alayna. OT went great. Alayna did very well in the fine motor part of the evaluation process. I filled out a sensory profile during that time. After that we went to the "gym" where the girls got to play on th mats with swings, slides, a ball pit, trampolines, and larger shape foamy things. Brooklyn was in her element there, LOL. Alayna, not so much. It's so interesting to watch the girls as their sensory issues are EXACT opposites. What Brooklyn is always seeking, Alayna is always avoiding. While the OT worked with Alayna with all the sensory things, an intern asked me more questions.
After everything the OT and I discussed what our main goals for Alayna are. We both agreed that Alayna's sensory issues with spinning, behind upside down, and being off balance aren't really enough to effect her in life. She will be able to avoid those things without interfering with her day to day life. Our biggest concerns are in the goals are in the areas of personal responsibility and self care. We discussed that our biggest goal is helping Alayna reach her full potential in life.
We are heading out for Alayna's initial IEP meeting. We've written up our main concerns, and some suggestions of modifications that can be made for her. I think we're also going to request Brooklyn's IEP assessment on Monday.
He also said that he agrees we may want to pull back on the medications. So, we're going to start slowly removing the guanfacine starting tomorrow through next week. On Thursday we're going to touch based with the doctor about how that's going and then discuss how we want to go about backing off on the Adderall. We'll see how she does and if we have any behavior concerns, especially with OT as if the behavior issues are related to the sensory stuff.
He also said that he thinks we should consider an IEP for Brooklyn. Mostly because her being withdrawn in school IS an issue that needs to be addressed. And that the OT at school should be able to help with the twice a month private OT. He suggested that we consider requesting one-on-one teaching for at least an hour a day, and one-on-one reading groups and more very small group activities.
So, that's the plan for now. Still unsure about the Aspergers testing, but if we can rule out ADHD once and for all (which we may be able to do with everything we're working on) we can then push for Asperger's more easily as we've already begun ruling out other things.
Also, the OT who did Alayna's eval (which will be explained below) is the same OT who will be seeing Brooklyn starting next week. This is great because she got to see Brooklyn in action. Brooklyn was completely well behaved in the first half, but went crazy once they went into the gym and Brooklyn could swing, slide, spin, and jump to her heart's content.
OK, onto Alayna. OT went great. Alayna did very well in the fine motor part of the evaluation process. I filled out a sensory profile during that time. After that we went to the "gym" where the girls got to play on th mats with swings, slides, a ball pit, trampolines, and larger shape foamy things. Brooklyn was in her element there, LOL. Alayna, not so much. It's so interesting to watch the girls as their sensory issues are EXACT opposites. What Brooklyn is always seeking, Alayna is always avoiding. While the OT worked with Alayna with all the sensory things, an intern asked me more questions.
After everything the OT and I discussed what our main goals for Alayna are. We both agreed that Alayna's sensory issues with spinning, behind upside down, and being off balance aren't really enough to effect her in life. She will be able to avoid those things without interfering with her day to day life. Our biggest concerns are in the goals are in the areas of personal responsibility and self care. We discussed that our biggest goal is helping Alayna reach her full potential in life.
We are heading out for Alayna's initial IEP meeting. We've written up our main concerns, and some suggestions of modifications that can be made for her. I think we're also going to request Brooklyn's IEP assessment on Monday.
Monday, October 1, 2012
We have the OT report FINALLY!
I spoke with Brooklyn's therapist today about the OT report as well as all of my notes about Brooklyn and how they related to Asperger's Syndrome. I also spoke with her about the medications Brooklyn is on, and my desire to have her off of them, especially considering that Brooklyn's behavior at school is no different on or off her medication. So, I have to talk it over with Joe and then talk it over with Brooklyn's psychiatrist about taking her off of the Adderall but keeping her on the Tenex/Guanfacine, and having her take it at lunch and again after school when she gets home.
I'm going to try to observe Brooklyn at school, both in the classroom and out on the playground. I want to see how she interacts with the other kids in both the classroom environment and out on the playground.
Well, we FINALLY got the OT report from Brooklyn's evaluation.
Here's the results:
Brooklyn has officially been diagnosed with Sensory Integration Disorder (AKA Sensory Processing Disorder).
She's in the 1st percentile for personal responsibility and the 14th percentile for adaptive domain.
I don't know exactly what all of the numbers mean, but basically a score outside of typical performance shows a difference between her and her typically developing peers.
The rest of the scores are a bit weird, basically the higher the "score" the more "typically developing" she is.
Factor
Sensory seeing: 21 out of 85 (definite difference)
Emotionally reactive: 55 out of 80 (probable difference)
Low Endurace/Tone 45 out of 45 (typical performance)
Oral Sensory Sensitivity 45 out of 45 (typical performance)
Inattention/Distractability 24/35 (probably difference)
Poor Registration 28 out of 40 (definite difference)
Sensory Sensitivity 20 out of 20 (typical performance)
Sedentary 17 out of 20 (typical performance)
Fine motor/perceptual 11 out of 15 (typical performance)
Sensory Processing:
Auditory Processing 30 out of 40 (typical performance)
Visual processing 37 out of 45 (typical performance)
Vestibular Processing 37 out of 55 (definite difference)
Touch processing 56 out of 90 (definite difference)
multisensory processing 20 out of 35 (definite difference)
oral sensory processing 50 out of 60 (typical performance)
Modulation
Sensory Processing Related to Endurace/tone 45 out of 45 (typical performance)
Modulation related to Body position and movement 28 out of 50 (definite difference)
Modulation of movement affecting activity level 22 out of 35 (probably difference)
Modulation of sensory input affecting emotional responses 15 out of 20 (probable difference)
Modulation of visual input affecting emotional responses and activity level 14 out of 20 (probable difference)
Behavior and emotional responses
Emotional/social responses 60 out of 85 (probably difference)
Behavioral outcome of Sensory Processing 19 out of 30 (probably difference)
Items indicating Thresholds for response 9 out of 15 (definite difference)
I'm going to try to observe Brooklyn at school, both in the classroom and out on the playground. I want to see how she interacts with the other kids in both the classroom environment and out on the playground.
Well, we FINALLY got the OT report from Brooklyn's evaluation.
Here's the results:
Brooklyn has officially been diagnosed with Sensory Integration Disorder (AKA Sensory Processing Disorder).
She's in the 1st percentile for personal responsibility and the 14th percentile for adaptive domain.
I don't know exactly what all of the numbers mean, but basically a score outside of typical performance shows a difference between her and her typically developing peers.
The rest of the scores are a bit weird, basically the higher the "score" the more "typically developing" she is.
Factor
Sensory seeing: 21 out of 85 (definite difference)
Emotionally reactive: 55 out of 80 (probable difference)
Low Endurace/Tone 45 out of 45 (typical performance)
Oral Sensory Sensitivity 45 out of 45 (typical performance)
Inattention/Distractability 24/35 (probably difference)
Poor Registration 28 out of 40 (definite difference)
Sensory Sensitivity 20 out of 20 (typical performance)
Sedentary 17 out of 20 (typical performance)
Fine motor/perceptual 11 out of 15 (typical performance)
Sensory Processing:
Auditory Processing 30 out of 40 (typical performance)
Visual processing 37 out of 45 (typical performance)
Vestibular Processing 37 out of 55 (definite difference)
Touch processing 56 out of 90 (definite difference)
multisensory processing 20 out of 35 (definite difference)
oral sensory processing 50 out of 60 (typical performance)
Modulation
Sensory Processing Related to Endurace/tone 45 out of 45 (typical performance)
Modulation related to Body position and movement 28 out of 50 (definite difference)
Modulation of movement affecting activity level 22 out of 35 (probably difference)
Modulation of sensory input affecting emotional responses 15 out of 20 (probable difference)
Modulation of visual input affecting emotional responses and activity level 14 out of 20 (probable difference)
Behavior and emotional responses
Emotional/social responses 60 out of 85 (probably difference)
Behavioral outcome of Sensory Processing 19 out of 30 (probably difference)
Items indicating Thresholds for response 9 out of 15 (definite difference)
Sunday, September 30, 2012
A Different Girl- What Aspergers Syndrome Means to Me - YouTube
A Different Girl- What Aspergers Syndrome Means to Me - YouTube:
Listen to this girl who describes her own issues with her own diagnosis with Asperger's syndrome. This is hard to use as an example of symptoms of Brooklyn. If you know my family and have met Alayna, however, you can see some of the randomness, body language, vocal rhythms and overall communications processes she uses. That's both concerning and somewhat relieving because, with her diagnosis of Peter's Plus, there are diagnosed developmental delays but no one can tell us what set of delays are present. While I am not suggesting Alayna has Asperger's Syndrome, I do think the autism spectrum is appropriate, now more than ever.
I would like to see this as Brooklyn gets older to see if she produces this level of both intelligence and inability to control her actions. It almost reminds me of Tourette Syndrome, but without the tics. In this way, the "tics" are just a jump from one action to another. Like drawing a line and your hand gets shaky so you waver to one side or another.
I can conceptualize things better when hearing them, and I can visualize what I am saying if I can see myself pictures of examples. This is helping a lot. Thank you, YouTube.
Listen to this girl who describes her own issues with her own diagnosis with Asperger's syndrome. This is hard to use as an example of symptoms of Brooklyn. If you know my family and have met Alayna, however, you can see some of the randomness, body language, vocal rhythms and overall communications processes she uses. That's both concerning and somewhat relieving because, with her diagnosis of Peter's Plus, there are diagnosed developmental delays but no one can tell us what set of delays are present. While I am not suggesting Alayna has Asperger's Syndrome, I do think the autism spectrum is appropriate, now more than ever.
I would like to see this as Brooklyn gets older to see if she produces this level of both intelligence and inability to control her actions. It almost reminds me of Tourette Syndrome, but without the tics. In this way, the "tics" are just a jump from one action to another. Like drawing a line and your hand gets shaky so you waver to one side or another.
I can conceptualize things better when hearing them, and I can visualize what I am saying if I can see myself pictures of examples. This is helping a lot. Thank you, YouTube.
Amazon.com: Used and New: Asperger's and Girls
Amazon.com: Used and New: Asperger's and Girls:
Morgan found this book to try to help find answers to Brooklyn's mannerisms and behavior quirks that are conflicting with her ability to interact with others. The social aspect of her problems is the most important at this point, at least to me. I am not so worried about her milestones, learning processes or motor skills. She can do most things she sets her mind to. Talking to others and sharing in a positive manner, however, are examples of things she just can't grasp well enough to be consistent.
Hopefully this book would give us a better idea of how to identify a disorder like Asperger's. I don't believe we're going to find a definitive diagnosis this way, but I agree we will get a better idea of the symptoms and how to approach and hopefully nullify the symptoms of what's really going on. We do want to get to the root of the problem and take care of what's really affecting her behavior, but you don't find the roots by looking for them first. They're buried and hiding. Behavior issues are like blackberry bushes: you have to start at the end of a vine (obvious symptoms) and trace it back to the base (how the symptoms connect), then start digging out the roots (any medical or psychological foundations creating the symptoms).
We're not rich. We're not even financially secure. So we have to do this stuff on our own. I don't expect Medicaid to do everything for us. Nor do I expect the public welfare system to pay for all the research when I am perfectly capable of doing research myself. If all we do is take books like this, get the premises of our claims solid, and bring that to a professional to weed through and come to a plausible conclusion, we've saved time for the professional, which saves money for Medicaid, which saves money for the state and federal budgets. Isn't that how we can truly fix the medical industry? Maybe that's just me being optimistic, though.
Morgan found this book to try to help find answers to Brooklyn's mannerisms and behavior quirks that are conflicting with her ability to interact with others. The social aspect of her problems is the most important at this point, at least to me. I am not so worried about her milestones, learning processes or motor skills. She can do most things she sets her mind to. Talking to others and sharing in a positive manner, however, are examples of things she just can't grasp well enough to be consistent.
Hopefully this book would give us a better idea of how to identify a disorder like Asperger's. I don't believe we're going to find a definitive diagnosis this way, but I agree we will get a better idea of the symptoms and how to approach and hopefully nullify the symptoms of what's really going on. We do want to get to the root of the problem and take care of what's really affecting her behavior, but you don't find the roots by looking for them first. They're buried and hiding. Behavior issues are like blackberry bushes: you have to start at the end of a vine (obvious symptoms) and trace it back to the base (how the symptoms connect), then start digging out the roots (any medical or psychological foundations creating the symptoms).
We're not rich. We're not even financially secure. So we have to do this stuff on our own. I don't expect Medicaid to do everything for us. Nor do I expect the public welfare system to pay for all the research when I am perfectly capable of doing research myself. If all we do is take books like this, get the premises of our claims solid, and bring that to a professional to weed through and come to a plausible conclusion, we've saved time for the professional, which saves money for Medicaid, which saves money for the state and federal budgets. Isn't that how we can truly fix the medical industry? Maybe that's just me being optimistic, though.
Saturday, September 29, 2012
Criteria for Aspergers, and why I think Brooklyn fits it
Diagnostic Criteria for 299.80 Asperger's Disorder, this was taken from the CDC website, http://www.cdc.gov/ncbddd/autism/hcp-dsm.html, everything in purple is my notes/observations about Brooklyn. My husband is going to add his own notes in at some point, I'll make him use a different color :)
Social Symptoms
A girl with Aspgerger's may exhibit the following social symptoms:
- Appears excessively shy or avoids interacting with others or making the first move socially (I can't tell you that I've EVER witnessed Brooklyn make the first move socially)
- Seems uncomfortable during conversation and may struggle with eye contact (Brooklyn doesn't always like to make eye contact, sometimes she does, but it's very much not consistently)
- Usually has only one close friend at school (in pre-school Brooklyn had ONE friend. I need to touch base with her teacher to be sure for her currently classroom)
- May play appropriately with toys and engage in pretend play or may focus on organizing objects or toys (Brooklyn really likes to play with her My Litttle Ponies, and generally the pretend play is mimicked from the TV show)
- Often shows empathy and compassion but may be confused by non-verbal social signals (Brooklyn tends to show empathy and compassion when encourage verbally)
- May have difficulty fitting in with peers due to clothing and hairstyle choices (This really isn't an issue right now as she's 5. But, her clothing choices are out there, LOL)
Communication Symptoms
The way an AS girl communicates may also be different from her peers:
- May have an exceptional vocabulary (Brooklyn tends to speak very well)
- Tends to mimic rather than providing natural responses (Honestly, I'm not sure on this one)
- May converse in predictable, "scripted" ways (Not sure on this either)
- Seems to struggle with non-verbal aspects of communication, such as body language and tone of voice (Not sure on this either)
- May use odd inflection (Not sure on this either, I haven't noticed it, so I'm going to say no for now)
- Appears to have difficulty dealing with unexpected verbal responses (I don't know. She's 5 so not all of her conversations even with her siblings or with her daddy or I are very normal.)
Behavioral Symptoms
The behavioral symptoms of Asperger's in girls may be very different from those in boys due to inherent differences in emotional processing:
- Less prone to act out physically or aggressively (Brooklyn does react aggressively, but that's only been towards her brother and younger sister, usually poor Aiden is the target though. He's great at antagonizing her)
- Intense focus on a particular subject, often involving animals or classic literature (I haven't noticed anything she's "obsessed" with, but she does have her favorites)
- Appears anxious when there are changes in routine (she is less prone to meltdowns when we stick to a routine and she's prepared for what's coming next. I usually plan out our day with her so she knows what's going to happen next)
- Practices rituals that appear to have no function (I haven't noticed anything like this)
- May play with dolls or toys well beyond the typical age for these items (She's 5, so dolls and toys are still age appropriate)
- Appears to have attractions or aversions to sensory stimuli, such as textures, foods, sounds, or visual patterns (Brooklyn is a sensory seeker! Spinning, touching things, being squished, bumping into people/things, etc)
- May engage in limited self-stimulating behavior, such as hand flapping, rocking, spinning, or shifting from foot to foot (She is a spinner! And she's always moving in some way or making some type of noise)
Physical Symptoms
AS also manifests itself in the way a girl carries herself:
- May have difficulty with fine or gross motor coordination (She is a bit clumsy, often tripping over her own feet or running into things, even walls)
- May become easily lost, even in familiar surroundings (I haven't noticed this, and she's only 5, so she doesn't go anywhere without an adult)
- Has an odd posture (I haven't noticed anything yet)
- Resists physical games or sports (I'm not really sure. She was talking about a game in PE called hula hoop bumper cars and she said she liked it)
SO frustrated!!
Turns out the big delay in getting OT started is the insurance. They don't want to cover OT for "just" sensory issues, they prefer for there to be fine motor skill delays to cover OT. Apparently it doesn't matter that an occupational therapist feels Brooklyn NEEDS OT twice a month for sensory issues. It doesn't matter that she's having massive meltdowns, if she doesn't have fine motor skill delays it pretty much just sucks to be here.
Want to hear the kicker? If she were diagnosed on the spectrum they'd approve it. Why? Well, our kids have medicaid. (Yep, we can't afford the crappy medical through Joe's work; and even we could, it's crappy and we'd have to pay a minimum of 20% of all the bills, so our kids are on medicaid. If you feel like being judgmental, please keep it to yourself). Why is having Medicaid an issue? Well, Medicaid in Washington state was recently sued for not providing adequate services to children on the Autism Spectrum. So, right now they're doing double time to make up for all their screw ups. On top of that, GETTING the evaluation to diagnose Aspergers has been next to impossible. Why? Because we basically have to prove she HAS Aspergers before they'll approve the evaluation.
Now, that really doesn't make sense to me. We have to PROVE she's on the spectrum before they'll pay for the evaluation to diagnose she's on the spectrum. How does one prove she's on the spectrum WITHOUT the evaluation? Because that's the problem we're having. You see, our regular pediatrician (whom usually I adore) refuses to consider anything other than ADHD. Our second opinion pediatrician was more willing to consider the possibility of maybe something else going on (the 13 page Asperger's check list filled out with our main concerns helped some as well). Our second opinion pediatrician referred us to behavior modification therapy, which is where we are now. Do you know what that's gotten us? It's gotten us what is turning out to be a completely useless referral for OT and another medication. Yes, my 5 year old little girl is taking TWO medications every day. If you thought I felt like shit just giving her the adderall, giving her guanfacine (Tenex) makes me feel twice as worse.
We've had to change Brooklyn's therapy time around due to her old therapist leaving and trying to find a time with the new therapist that works around the school schedule. So, we're finally set with 4pm on Mondays. Her new therapist seems really great, but I have to admit I REALLY miss Cindy, the old therapist. She was SO great with Brooklyn, and I really liked her too. The new therapist, Amanda, isn't bad. But, I don't have as much of a connection with her and I'm not sure Brooklyn does either.
Anyways, what I was really wanting to get to is this, http://www.cdc.gov/ncbddd/autism/hcp-dsm.html which is the Center for Disease Control diagnostic criteria for Autism Spectrum Disorder. My notes about Brooklyn are listed in purple.
Diagnostic Criteria for 299.80 Asperger's Disorder
Symptoms in girls, again my notes on Brooklyn are in purple.
Want to hear the kicker? If she were diagnosed on the spectrum they'd approve it. Why? Well, our kids have medicaid. (Yep, we can't afford the crappy medical through Joe's work; and even we could, it's crappy and we'd have to pay a minimum of 20% of all the bills, so our kids are on medicaid. If you feel like being judgmental, please keep it to yourself). Why is having Medicaid an issue? Well, Medicaid in Washington state was recently sued for not providing adequate services to children on the Autism Spectrum. So, right now they're doing double time to make up for all their screw ups. On top of that, GETTING the evaluation to diagnose Aspergers has been next to impossible. Why? Because we basically have to prove she HAS Aspergers before they'll approve the evaluation.
Now, that really doesn't make sense to me. We have to PROVE she's on the spectrum before they'll pay for the evaluation to diagnose she's on the spectrum. How does one prove she's on the spectrum WITHOUT the evaluation? Because that's the problem we're having. You see, our regular pediatrician (whom usually I adore) refuses to consider anything other than ADHD. Our second opinion pediatrician was more willing to consider the possibility of maybe something else going on (the 13 page Asperger's check list filled out with our main concerns helped some as well). Our second opinion pediatrician referred us to behavior modification therapy, which is where we are now. Do you know what that's gotten us? It's gotten us what is turning out to be a completely useless referral for OT and another medication. Yes, my 5 year old little girl is taking TWO medications every day. If you thought I felt like shit just giving her the adderall, giving her guanfacine (Tenex) makes me feel twice as worse.
We've had to change Brooklyn's therapy time around due to her old therapist leaving and trying to find a time with the new therapist that works around the school schedule. So, we're finally set with 4pm on Mondays. Her new therapist seems really great, but I have to admit I REALLY miss Cindy, the old therapist. She was SO great with Brooklyn, and I really liked her too. The new therapist, Amanda, isn't bad. But, I don't have as much of a connection with her and I'm not sure Brooklyn does either.
Anyways, what I was really wanting to get to is this, http://www.cdc.gov/ncbddd/autism/hcp-dsm.html which is the Center for Disease Control diagnostic criteria for Autism Spectrum Disorder. My notes about Brooklyn are listed in purple.
Diagnostic Criteria for 299.80 Asperger's Disorder
Social Symptoms
A girl with Aspgerger's may exhibit the following social symptoms:
- Appears excessively shy or avoids interacting with others or making the first move socially (I can't tell you that I've EVER witnessed Brooklyn make the first move socially)
- Seems uncomfortable during conversation and may struggle with eye contact (Brooklyn doesn't always like to make eye contact, sometimes she does, but it's very much not consistently)
- Usually has only one close friend at school (in pre-school Brooklyn had ONE friend. I need to touch base with her teacher to be sure for her currently classroom)
- May play appropriately with toys and engage in pretend play or may focus on organizing objects or toys (Brooklyn really likes to play with her My Litttle Ponies, and generally the pretend play is mimicked from the TV show)
- Often shows empathy and compassion but may be confused by non-verbal social signals (Brooklyn tends to show empathy and compassion when encourage verbally)
- May have difficulty fitting in with peers due to clothing and hairstyle choices (This really isn't an issue right now as she's 5. But, her clothing choices are out there, LOL)
Communication Symptoms
The way an AS girl communicates may also be different from her peers:
- May have an exceptional vocabulary (Brooklyn tends to speak very well)
- Tends to mimic rather than providing natural responses (Honestly, I'm not sure on this one)
- May converse in predictable, "scripted" ways (Not sure on this either)
- Seems to struggle with non-verbal aspects of communication, such as body language and tone of voice (Not sure on this either)
- May use odd inflection (Not sure on this either, I haven't noticed it, so I'm going to say no for now)
- Appears to have difficulty dealing with unexpected verbal responses (I don't know. She's 5 so not all of her conversations even with her siblings or with her daddy or I are very normal.)
Behavioral Symptoms
The behavioral symptoms of Asperger's in girls may be very different from those in boys due to inherent differences in emotional processing:
- Less prone to act out physically or aggressively (Brooklyn does react aggressively, but that's only been towards her brother and younger sister, usually poor Aiden is the target though. He's great at antagonizing her)
- Intense focus on a particular subject, often involving animals or classic literature (I haven't noticed anything she's "obsessed" with, but she does have her favorites)
- Appears anxious when there are changes in routine (she is less prone to meltdowns when we stick to a routine and she's prepared for what's coming next. I usually plan out our day with her so she knows what's going to happen next)
- Practices rituals that appear to have no function (I haven't noticed anything like this)
- May play with dolls or toys well beyond the typical age for these items (She's 5, so dolls and toys are still age appropriate)
- Appears to have attractions or aversions to sensory stimuli, such as textures, foods, sounds, or visual patterns (Brooklyn is a sensory seeker! Spinning, touching things, being squished, bumping into people/things, etc)
- May engage in limited self-stimulating behavior, such as hand flapping, rocking, spinning, or shifting from foot to foot (She is a spinner!)
Physical Symptoms
AS also manifests itself in the way a girl carries herself:
- May have difficulty with fine or gross motor coordination (She is a bit clumsy, often tripping over her own feet or running into things, even walls)
- May become easily lost, even in familiar surroundings (I haven't noticed this, and she's only 5, so she doesn't go anywhere without an adult)
- Has an odd posture (I haven't noticed anything yet)
- Resists physical games or sports (I'm not really sure. She was talking about a game in PE called hula hoop bumper cars and she said she liked it)
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