We received an envelope in the mail today from U of I and I was all excited to run inside and open it! So much crossed through my mind in those few moments: It's only been 2 weeks since the testing so could it really be results? If the results were positive for something, they would call and not send a letter, right? If the letter says all the tests came back with nothing genetic, then we are back to square one with finding the cause. Just open the darn envelope!
Once I started reading, I actually felt relief. It did not include any results, just the typed report from the exam he had, the review of the pregnancy and birth, the timeline of his regression, and the recommended tests they talked to us about. I just don't think I was ready to hear any news yet about the testing and that is why I felt relief. I'm not sure I can really explain it. If something comes back positive, then we may have a genetic cause which means that it could have been one of us that caused this to happen to Brycen. If it comes back with no cause found, then it will be hard to move on and accept that we may never know the reason for this to have happened to Brycen. Don't get me wrong...I've been trying to prepare myself for both, but I don't think this is anything that you can really prepare for. It's like the initial diagnosis...even though I KNEW he had Autism for months, I still walked into the children's clinic at U of I on August 31, 2009 with the hope that we would walk out of there with a child that was magically cured of all of his developmental delays. In all reality, I knew that wasn't going to happen (obviously it's not possible!), but that was exactly how I was feeling. Now we are approaching a different area of this road we are now traveling that is very similar to that day.
So, all in all, I did learn something new from this report. Remember when I previously mentioned that during Brycen's physical exam, they found a marker on his skin that could point to a serious medical condition that is not on the ASD spectrum, but has symptoms similar to those of Autism but also has a bunch of medical problems that accompany it. Anyway, we had discussed with the doctors that day about doing a kidney ultrasound and I thought they meant we would wait until after getting these results before going forward with that. The report actually says it is recommended to get that ultrasound now so if there are any abnormalities on the kidneys, testing can be further done for this disease (additional testing would require Brycen to be sedated). It also mentions that one marker is not exactly worrisome, but 3 skin markers is more definitive.
I guess this means I will be calling the doctor's office this week to get an ultrasound scheduled at the hospital for him. While an ultrasound is not invasive, it will not be the easiest with a child that does not like touch or different environments. Then we will wait for those results, as well as the Tier 1 of the chromosome testing by U of I, before we go any further or have anymore answers.
"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
Saturday, March 5, 2011
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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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