I frequently need to use other's words to describe my feelings, whether it is famous quotes or blog entries from Autism Speaks. Sometimes I feel trapped in my life, in that if I share exactly how I feel about something, someone will be upset. I have kept so many of my feelings and thoughts inside for the last year or longer and since I feel like I can't share those, I use what other people say to share them for me. Some day, I will get the strength to share exactly how I feel and be able to put it into words so others will understand, not get angry with me. This is me...and I'm starting to learn if you don't like me (or what my life involves, such as Brycen and advocating for all others with disabilities), then you just don't have to be a part of it. On most days, I feel so much support from so many around me...and then there are other days where I am so lonely and sad that this is how it will be forever. To those who send me simple messages of "you're doing a great job" "you're a good mommy," please know that you are my backbone right now. I know every mom and every person needs to hear they are doing a good job, it's part of human nature to seek out encouragement...but I feel that I need it more right now than ever. It makes me sad that I do not feel I have the support and encouragment from some of those people that are supposed to be the closest to me. I'm also sad that I sometimes have had to end relationships with others because I need to focus on what is going on in our lives. It's not because I am selfish or self-absorbed, but it's because I have no choice but to do that. I am only one person that can deal with only so much drama, and at some point, I have to push that aside and come to terms with there are two little kids that need me more than ever (one little boy especially) and they DESERVE a happy, determined, and loving mommy. I have to make choices about where we go, what we do, who we see, how much to do in one weekend, because of that reason. I'm also learning that those who really and truly understand, are the ones helping me figure these things out. The ones who don't, are the ones who are still questioning why we can't do that or go there or go at that time.
So, once again, here is another blog entry from Autism Speaks. This time written by a person that is friends with a parent of a child with autism. I feel like this is me writing "What is Autism". The part about hearing "I love you" or "Mommy" or the "pleading and begging" and the "not taking for granted", "frustrated grunts", "communication in scream"...this is our life.
http://blog.autismspeaks.org/2010/09/25/itow-what-is-autism/
"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, September 25, 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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