The doctors appointment to discuss medications is done and a script has been called into the pharmacy to be picked up tomorrow for the sleep medication. Lots of discussion with a very thorough and very understanding physician was so appreciated while making a big step!
She does seem to agree that more & consistent sleep for him may make his days and evenings easier on us and on him. She was very careful to get dosage correct, go over any side effects with me, answer all of my questions, as well as already review the next steps with me. It was so nice to have undivided and unrushed attention to make sure we are doing this right. She reassured me and wanted my understanding that she may want to call U of I along the way if she has questions herself (especially about starting a behavioral med soon). I like the upfront attitude she had, the way she interacted with Brycen, and the obvious care she has for her position as a doctor. Despite having to wait 1/2 hr for the start of the appt, I walked out of there far less stressed than when I first started contemplating the start of medication.
Which comes to the subject of that big decision. Brycen has been very, very healthy overall. He has only been on two rounds of antibiotics in the last 4 years and with the exception of those first few weeks of his life when battling the severe case of jaundice and having visiting nurses at the house, he has only had to go to the doctor two other times besides his well-child visits (for the two infections listed above: ear and pink-eye). We are very lucky in this aspect!
On the other hand, since I am not used to giving him medications, I think that I have put more thought into this decision than some parents. He's 4 now and the typical 4 yr old can typically tell their parents how they feel and through visual cues, the parents can tell if a side effect is happening. Since research has shown that medications affect children with Autism very differently than the typical child, it is soooo important for us to be vigilant in watching him. Brycen does not feel the same pain another child feels, so if he has a headache, he may not react by holding his head and he obviously can't tell us something hurts. He is kind of unstable on his feet already, so how will we know if he has a dizzy reaction. He already doesn't sleep well, so that is not something that will give us the hint. He tends to drool already (has low muscle tone in his mouth/jaw), doesn't make eye contact well, is aggressive, hyperactive, etc...these are all various side effects of many medications.
I think the worrisome part for me is not the actual giving of the meds...but the side effects it could cause and how most of the meds he may ever take have not even been studied in children with Autism. It's just overwhelming to think of how big of a decision this really is...and to have the support of the doctor's office that is right down the street is helping so much!
We discussed how starting these medications and trying to decrease some of his symptoms may actually help him in so many ways, and how we are never going to know unless we try. We can't cure him from the Autism, but we have a chance to help alleviate the obvious effects it has on his brain and body, so it's the obvious next step for us that is available without a waiting list and without having to travel hundreds of miles away from home and our jobs to try other therapies that may or may not work.
"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller
Monday, October 18, 2010
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Autism and Our Family
"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.
Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!
Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.
We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.
Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.
Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!
Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.
We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.
Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.
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