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.
Showing posts with label doctor. Show all posts
Showing posts with label doctor. Show all posts
Tuesday, November 13, 2012
Sunday, September 30, 2012
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.
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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