I've been thinking about this post for some time and how I wanted to word some of these feelings and emotions I have. Part of my job responsibilities are to visit the families and children on my caseload to update their paperwork every year. There are quite a few children that have been diagnosed with an ASD that I supervise and lately I find myself comparing Brycen's "quirks" with theirs at these visits (of course to myself, not out loud). On a visit a few weeks ago, a mother said "Don't you feel like you have joined a club?" after I finally got the nerve to share our situation with her at the end of the meeting. After thinking about this on the drive home, I realized that explains a lot of how I feel right now. I have officially joined a "club" of parents, where the dues are extremely high (both financially and emotionally), no choice of joining, and it's a "club" I will be a member of for the rest of my life.
I have had a handful of people already tell me that they "know how I feel." I know they are saying this to be nice, because they care, or because they just aren't sure what to say to me. My response to them has been very honest in that they have no clue how I feel since not one of these people have a child that has been diagnosed with an ASD, or any developmental disorder for that matter. I'm not being mean at all, just being honest. Just because you may know a child, or work with a child, or be the aunt/uncle/grandparent/cousin of a child with an ASD...you still have no idea how it feels to raise a child with an ASD 24 hours a day. Just like I have no idea how a parent of a child with a life-threatening illness or with physical limitations may feel.
I also have heard "I'm sorry" from a few people in response to my explanation of Brycen's illness. I'm sure they say this for the same reasons as the other people, but once again I am going to be honest with them. Brycen is not dying...he does not have an illness that is life-threatening. To me, "I'm sorry" is something you say to someone that has just experienced or is going to experience death or a tragedy. I am DEFINITELY not sorry to have been chosen to be Brycen's mom, nor am I sorry that he has an ASD. I am grateful that overall he is a healthy and happy child and he is still the Brycen I gave birth to almost 3 years ago, despite developing some "quirks" along the way.
I guess what I am trying to say is that I am only human and am experiencing a lot of emotions attached to this situation that most of you will never understand... and that's OK. I don't expect you to understand how I feel or to know the exact thing to say to me in conversation about it. I have yet to determine if it is easier that I had knowledge and experience with Autism prior to Brycen's diagnosis. In some ways, I think it is easier because I understand the medical part of the diagnosis, as well as I'm aware of the therapies and treatments that are available. But then I know that my previous experience with Autism may prevent me from having as much hope for some kind of recovery of language or social skills that Brycen will need in order to live independently and go to college some day. I am having a hard time separating my work life/knowledge from my personal life/experience. I guess this will be a part of the grieving process I will go through before I can fully accept how our lives have changed.
"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, July 10, 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.
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