I am signed up to attend a free training tonight in Fort Dodge for parents, caregivers, and teachers of children with Autism given by Child Health Specialty Clinics (an outreach of U of I who gave Brycen his tentative diagnosis in June of last year). I decided last night that I just can't go...as much as I love to learn things about Autism, going to trainings and conferences about it is a form of torture to me. I thought if I had someone to go with me, it might make it easier, but nobody from around here informed me that they signed up, so I would be on my own...much less gas money to drive over an hour and back is not exactly free-flowing around here.
So let me explain why it is torture as I'm sure some of you are thinking what is better than being around people that completely understand my daily issues with Brycen and what is better than learning more about the horrible thing that affects my child. Well, here it is...I attended a free communication training last December in Des Moines that focused on helping children with autism learn how to communicate through pictures and technological devices. Following that training, I became so focused on making sure I had what I needed to start this...to the point of overwhelming me and causing me more stress than was needed. Then I decided to attend a conference in Des Moines on April 2 to learn about helping children with autism and socialization skills...again, I just became so focused on this for weeks later that I could not stop myself from analyzing what I am doing wrong, what I can do better, and who the heck can I bribe to borrow their neurotypical children to learn how to "mentor" Brycen in socializing.
Every time I go to one of these trainings, I want to cry...it puts everything that we are going through into perspective once again. I can get through the day-to-day stuff as it just becomes a routine to battle the daily issues that arise...but then someone puts it in writing in a handout in front of you, or people ask questions about adults with autism...and it just reminds me of what we are really fighting here...a life-long disorder that the doctors still have no clue as to why or how it manifests, where it manifests, how many areas of the body it can affect, and of course absolutely no cure despite the many areas of therapy that continue to form.
On the other hand, I do have an obsession with building my "Autism library" and continue to order books that I feel will help me address certain things, like sensory issues and socialization skills, as well as a handful of children's books that focus on siblings and friends and teaching them about Autism in simpler terms and stories. The reason why I can handle reading these books and not going to trainings, is it doesn't matter if I cry while reading the book...I can just sit it down and come back to it when I feel I am a little stronger to do so. A training is in a room full of people and I don't want to be that parent that is still crying one year after the diagnosis.
This just emphasizes how they say that the grieving really never ends...it just cycles and cycles...and as a mother, I need to know when it is time to say "enough" and to stop "torturing myself." I need to just do what I do, learn at my own pace, be the best parent I can with the tools I have, and not feel vulnerable to the people that put these trainings on and their handouts!
"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
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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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