So, after a few months of realization and research, that cultivated in the IA City evaluation that reiterated what we have thought for some time now...I am now on the road to "acceptance." Just like when you lose someone close to you, parents of children that are diagnosed with a disability go through the stages of grief and hopefully they all come to the final stage of "acceptance." I am slowly getting there, though there are some rough days where I still wonder why and how...but those days are very few now!
Mike and I have talked many times about what we expect from Brycen over the next several years. Obviously these expectations are quite different from what we expect from Aubree, but not so much really. We expect him to listen in school, to continue to work on his speech, to act appropriately with his peers, etc. But with Brycen, we know it is going to take much longer to get to these points with a lot of extra help from his teachers, others that work with him, doctors, us, his sister, his grandparents, and his extended family and friends. Some people may feel that we are setting some of our expectations low for him. Mike and I have discussed this and due to our personalities, background, and our family dynamics...we have agreed that we want to celebrate and be surprised by each thing/word/activity that Brycen accomplishes. The other side of this, is if we set our expectations too high for him, we will experience disappointment and frustration when he doesn't meet them. The idea is to challenge him and ourselves by setting our expectations somewhere in the middle, but this is not easy considering he is still so young and we are still getting to know his strengths and weaknesses.
I have also taken a lot of time to wonder what Brycen must be feeling during all of this. We are working hard at learning to simplify our language to him, control our responses so they do not cause him to have a tantrum, be proactive when change is to come, and to just live as a family best as we can with the added stress (though it feels like this stress is less now that it has been affirmed that he needs the extra help and we were not imagining the things we were seeing). I ran across this website that gave me a little bit of insight into how he may be feeling now and in the future.
Please take a look at this, as I feel that everyone can benefit from reading this article, whether you know a child/adult with Autism or not!
http://www.ellennotbohm.com/ten_things_article.html
"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, September 28, 2009
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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.
Beautiful post Melissa! This article is wonderful! I think I will pass it on to my friend. It says so much! Thanks for sharing it. :) xo Nancy
ReplyDeleteI think your feelings about the expectations are right on. Anyone who doesn't think so should try being the parent and doing the research!
ReplyDelete