No sleep progress after the first 3 nights. He has woken up all 3 and even though we are still on the lower dosage, my hope is dwindling that this might not be our "miracle" sleeping drug.
I should have known that Brycen probably wouldn't react the way I was hoping. When has he in the past? When I expect the worst behavior, he demostrates the best...when I expect the day to go well is when we have one of the worst days ever. This kid just doesn't follow the norm. So many parents have raved about how this medication was so great for their child from the first night they took it, that I really had my hopes high that after so many months to a year of contemplating this decision, that we would finally be able to sleep. Don't get me wrong...I know all parents go through the infant stage of lack of sleep and many children still wake up during the night into their preschool years. The difference is that Brycen doesn't just wake up...he stays awake usually for 2-3 hours at a time. While he is awake, we are forced to stay awake also for fear of his safety. I went from being a very heavy sleeper before kids, to waking to no sound of my child just standing by my head.
We are absolutely exhausted. We take turns each night when he wakes, we try to go to sleep right after he does not knowing what that night will include, but there is not much more we can do in this situation but wait and see. I absolutely hate that term too..."wait and see"...the exact same thing many people implied to me after Brycen's initial diagnosis. Well, I don't have the patience to wait and see. Sleep deprivation for years has taken a huge toll on us. Napping is not possible unless both of us are home on Sundays, our one day each week that we are together (and some weeks, we don't even have that day). Brycen needs constant supervision and attention and all we do is run around all day long after him, ensuring his safety, working on appropriate play, etc. Then when we don't get a decent night of sleep, our body doesn't have time to recover for the next 16 hours of caring for him. We all miss our sleep in this house...so please, please, please cross your fingers that the higher dosage works or we are back to square one!
"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
Friday, October 22, 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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