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.
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Wednesday, October 31, 2012
Tuesday, June 12, 2012
Amazing news!!
Well, the average person probably wouldn't find this "amazing" news, but to us, that is exactly what it is!
Today was Brooklyn's intake appointment for a new behavior modification therapy. There's a bit of back story that's required before I get into today's exciting news.
*Back story: A little more than18 months ago Brooklyn started behavior modification therapy for the first time. At the time, I had NO idea what to expect or what my concerns actually were. All I knew is that my almost 4 year old was completely uncontrollable. She was aggressive, impulsive, didn't listen, had massive meltdowns at the store, and was like a 120+mph wild ball of energy. The therapist diagnosed Brooklyn with Oppositional Defiance Disorder (ODD). The more I learned about ODD, the more I thought "there's NO way Brooklyn has ODD." You see, Brooklyn was not intentionally defiant.
After about 5 months of this, I went back to our pediatrician, again in tears, BEGGING for help. The therapy wasn't working. As I desperately tried to keep my daughter from tearing down the walls (she instead alternated between shredding the paper over the exam table, jumping off of the exam table, and ripping things from her sister's hands), our pediatrician suggested we consider trying medication for ADHD. This was the first time ADHD was brought up. Previous to this, I will admit I thought ADHD was a bunch of bull poo. I thought it was an over diagnosed excuse for insanely out of control children with crappy parenting. The doctor wrote out a prescription for 5mg of Adderall. 2 weeks later I still hadn't filled the prescription... That was the night that Brooklyn drank about 1/4 of my espresso while I was making dinner. That was also the first time Brooklyn sat still during dinner, ate her food in one sitting, and went to bed without a knock-down-drag-out battle. The next day we filled the prescription.
I can tell you, I INSTANTLY noticed a difference in Brooklyn's behavior. My 120+mph wild ball of energy was now a 60mph ball of less energy. It wasn't perfect, but it brought things down to such a level that it FELT perfect. We stopped the useless behavior modification therapy; 6 months wasted. But, as time progressed, I began to notice that the Adderall was not the magic-cure-all I had hoped. So, back to the pediatrician we went, this time armed with research. Research about Aspergers Syndrome (high functioning Autism) in girls and Sensory Processing Disorder (SPD). Our pediatrician said no way to both suggestions and upped Brooklyn's Adderall to 10mg.
I continued my research online. I KNEW it wasn't just ADHD, there was something else. The more research I did, the more I kept coming back to Aspergers/high functioning Autism. Again, our pediatrician again said no way. You see, Brooklyn doesn't have severe social issues, therefore our pediatrician said it was highly unlikely. So, I compiled more information, printing out a 15 page Aspergers checklist and completing it based on what my husband and I saw daily in Brooklyn. And that is when I made an appointment with a different pediatrician for a second opinion.
And, for the first time, I felt like at least half of what I was saying was being listened to. Again, I was told it was unlikely that it was Aspergers, but that SPD was a possibility. We were referred to a different therapy location for NEW behavior modification therapy. I have to tell you, I didn't think it would do much good. But, it was a starting point. You see, our insurance wont approve of Autism OR SPD evaluations until we can prove that it's necessary. So, we went into the appointment today.
That ends the back story.
Onto today's appointment. We arrived 15 minutes early so I could fill out the MOUNTAIN of paperwork. Mental health history, health history, family mental health history, family health history.... Well, you get the idea. They picked up our paperwork and about 10 minutes later we were called back for our appointment. I explained my concerns with Aspergers and SPD and we discussed Brooklyn while the therapist tried her best to engage Brooklyn (it did NOT happen) and observed Brooklyn playing with Bella and Aiden. Finally, after about 90 minutes the therapist said to me "I am not comfortable making any type of diagnosis after just one visit, but I believe that Brooklyn IS on the spectrum. ADHD is not the only thing going on with her." That would be the autism spectrum. I cried. Not because I was worried or scared, but because I KNEW. And finally my concerns were being listened to. Finally someone saw what I saw. FINALLY!
Finally I could start working in the right direction to getting my daughter the help she needs to over come the bumps along the road of life. This was truly the best news I could have received. Even now, hours later, I feel as if a huge weight has been lifted off of my chest. We have a game plan.
The plan isn't big, the plan isn't fancy, but it's a plan.
1. We will be meeting with a psychiatrist to discuss options for medication for the ADHD, I'd like to consider herbal options as they tend to have much less dangerous side effects than pharmaceutical stimulants. I don't think we'll be able to get Brooklyn off of medication completely any time soon. Without the medication Brooklyn is a mess; that's really the only way to describe her off of her Adderall. But, the hope is that we can find the best fit for her to give her the ability to attend school without any issues.
2. We will be starting therapy with a therapist who works with ADHD and Autism. There are 3 goals here, to teach Brooklyn some type of impulse control, to help Brooklyn be able to function well enough in school to reach her academic potential, and to prove to our insurance company that a full Autism evaluation at either OHSU or Providence is necessary.
3. As soon as school starts we will be requesting a full IEP for Brooklyn, especially an OT (occupational therapy) evaluation, as they would be best able to deal with the sensory issues.
So, good news hearing that our daughter most likely has Autism.
Today was Brooklyn's intake appointment for a new behavior modification therapy. There's a bit of back story that's required before I get into today's exciting news.
*Back story: A little more than18 months ago Brooklyn started behavior modification therapy for the first time. At the time, I had NO idea what to expect or what my concerns actually were. All I knew is that my almost 4 year old was completely uncontrollable. She was aggressive, impulsive, didn't listen, had massive meltdowns at the store, and was like a 120+mph wild ball of energy. The therapist diagnosed Brooklyn with Oppositional Defiance Disorder (ODD). The more I learned about ODD, the more I thought "there's NO way Brooklyn has ODD." You see, Brooklyn was not intentionally defiant.
After about 5 months of this, I went back to our pediatrician, again in tears, BEGGING for help. The therapy wasn't working. As I desperately tried to keep my daughter from tearing down the walls (she instead alternated between shredding the paper over the exam table, jumping off of the exam table, and ripping things from her sister's hands), our pediatrician suggested we consider trying medication for ADHD. This was the first time ADHD was brought up. Previous to this, I will admit I thought ADHD was a bunch of bull poo. I thought it was an over diagnosed excuse for insanely out of control children with crappy parenting. The doctor wrote out a prescription for 5mg of Adderall. 2 weeks later I still hadn't filled the prescription... That was the night that Brooklyn drank about 1/4 of my espresso while I was making dinner. That was also the first time Brooklyn sat still during dinner, ate her food in one sitting, and went to bed without a knock-down-drag-out battle. The next day we filled the prescription.
I can tell you, I INSTANTLY noticed a difference in Brooklyn's behavior. My 120+mph wild ball of energy was now a 60mph ball of less energy. It wasn't perfect, but it brought things down to such a level that it FELT perfect. We stopped the useless behavior modification therapy; 6 months wasted. But, as time progressed, I began to notice that the Adderall was not the magic-cure-all I had hoped. So, back to the pediatrician we went, this time armed with research. Research about Aspergers Syndrome (high functioning Autism) in girls and Sensory Processing Disorder (SPD). Our pediatrician said no way to both suggestions and upped Brooklyn's Adderall to 10mg.
I continued my research online. I KNEW it wasn't just ADHD, there was something else. The more research I did, the more I kept coming back to Aspergers/high functioning Autism. Again, our pediatrician again said no way. You see, Brooklyn doesn't have severe social issues, therefore our pediatrician said it was highly unlikely. So, I compiled more information, printing out a 15 page Aspergers checklist and completing it based on what my husband and I saw daily in Brooklyn. And that is when I made an appointment with a different pediatrician for a second opinion.
And, for the first time, I felt like at least half of what I was saying was being listened to. Again, I was told it was unlikely that it was Aspergers, but that SPD was a possibility. We were referred to a different therapy location for NEW behavior modification therapy. I have to tell you, I didn't think it would do much good. But, it was a starting point. You see, our insurance wont approve of Autism OR SPD evaluations until we can prove that it's necessary. So, we went into the appointment today.
That ends the back story.
Onto today's appointment. We arrived 15 minutes early so I could fill out the MOUNTAIN of paperwork. Mental health history, health history, family mental health history, family health history.... Well, you get the idea. They picked up our paperwork and about 10 minutes later we were called back for our appointment. I explained my concerns with Aspergers and SPD and we discussed Brooklyn while the therapist tried her best to engage Brooklyn (it did NOT happen) and observed Brooklyn playing with Bella and Aiden. Finally, after about 90 minutes the therapist said to me "I am not comfortable making any type of diagnosis after just one visit, but I believe that Brooklyn IS on the spectrum. ADHD is not the only thing going on with her." That would be the autism spectrum. I cried. Not because I was worried or scared, but because I KNEW. And finally my concerns were being listened to. Finally someone saw what I saw. FINALLY!
Finally I could start working in the right direction to getting my daughter the help she needs to over come the bumps along the road of life. This was truly the best news I could have received. Even now, hours later, I feel as if a huge weight has been lifted off of my chest. We have a game plan.
The plan isn't big, the plan isn't fancy, but it's a plan.
1. We will be meeting with a psychiatrist to discuss options for medication for the ADHD, I'd like to consider herbal options as they tend to have much less dangerous side effects than pharmaceutical stimulants. I don't think we'll be able to get Brooklyn off of medication completely any time soon. Without the medication Brooklyn is a mess; that's really the only way to describe her off of her Adderall. But, the hope is that we can find the best fit for her to give her the ability to attend school without any issues.
2. We will be starting therapy with a therapist who works with ADHD and Autism. There are 3 goals here, to teach Brooklyn some type of impulse control, to help Brooklyn be able to function well enough in school to reach her academic potential, and to prove to our insurance company that a full Autism evaluation at either OHSU or Providence is necessary.
3. As soon as school starts we will be requesting a full IEP for Brooklyn, especially an OT (occupational therapy) evaluation, as they would be best able to deal with the sensory issues.
So, good news hearing that our daughter most likely has Autism.
Tuesday, May 1, 2012
Another step in the right direction
Well, it's KIND OF a step in the right direction. Brooklyn had originally had testing done for Celiacs disease about a year ago. It came back with one normal and one slightly high (I'm not exactly sure HOW the test breaks down, but that's what we were told). That was right in the middle of behavior modification therapy.
Last week we saw a new doctor about a second opinion, I'm not certain that ADHD is the only thing going on with her. The new doctor ordered a new Celiac's test. Today, we found out that the test came back perfectly normal. While it doesn't give us any specific answers, it rules out gluten intolerance as a cause of the behavior concerns.
Today was a pretty good day, only one minor meltdown. My mom took us, my sister, my nephew, and my aunt out to lunch. Brooklyn couldn't decide where she wanted to sit and then finally picked where she wanted, except that someone was already sitting there. After lots of tears and playing musical chairs she was finally content with her place at the table.
We're still playing phone tag with the insurance company. I have to get pre-approval for therapy at the new location and I have to speak to a specific person. Unfortunately he's never available when I call. Hopefully we can get that figured out soon so that we can get an intake appointment started ASAP. It should help us come fall when she starts Kindergarten and we push for an IEP.
Outside of the one minor meltdown, we did have a couple other fun issues. Bella gave herself a blood nose this morning and refused to listen to ANYTHING I had to say about how to fix it. I'm going to try to get the blood out of her green shirt with hydrogen peroxide, but I think it may be ruined. After about 15-20 minutes we finally got it to stop. Brooklyn has this thing with sticking her fingers in her ears, apparently she had some type of scratch in there because she came to me upset because her ear was bleeding. Thankfully it didn't take nearly as long as the nose bleed to stop. However, at lunch she decided to pick at her ear again and start it back up.
Crossing my fingers and saying some prayers that the insurance guy calls us back tomorrow so that we can get things going to get this therapy started!
Last week we saw a new doctor about a second opinion, I'm not certain that ADHD is the only thing going on with her. The new doctor ordered a new Celiac's test. Today, we found out that the test came back perfectly normal. While it doesn't give us any specific answers, it rules out gluten intolerance as a cause of the behavior concerns.
Today was a pretty good day, only one minor meltdown. My mom took us, my sister, my nephew, and my aunt out to lunch. Brooklyn couldn't decide where she wanted to sit and then finally picked where she wanted, except that someone was already sitting there. After lots of tears and playing musical chairs she was finally content with her place at the table.
We're still playing phone tag with the insurance company. I have to get pre-approval for therapy at the new location and I have to speak to a specific person. Unfortunately he's never available when I call. Hopefully we can get that figured out soon so that we can get an intake appointment started ASAP. It should help us come fall when she starts Kindergarten and we push for an IEP.
Outside of the one minor meltdown, we did have a couple other fun issues. Bella gave herself a blood nose this morning and refused to listen to ANYTHING I had to say about how to fix it. I'm going to try to get the blood out of her green shirt with hydrogen peroxide, but I think it may be ruined. After about 15-20 minutes we finally got it to stop. Brooklyn has this thing with sticking her fingers in her ears, apparently she had some type of scratch in there because she came to me upset because her ear was bleeding. Thankfully it didn't take nearly as long as the nose bleed to stop. However, at lunch she decided to pick at her ear again and start it back up.
Crossing my fingers and saying some prayers that the insurance guy calls us back tomorrow so that we can get things going to get this therapy started!
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