"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, January 22, 2010

Acceptance of course...but a cure would be even better!


Many of you have probably been reading the recent status updates on Facebook that people are using that refer to an illness, etc and that people just want acceptance. The recent one I have been reading on a lot of my "friends" statuses are about children with disabilities and how they want people to know it is not a disease and that all they want is acceptance. I think it is great that so many people are wanting to spread the word about children with disabilities! But I do have to disagree with this statement a little bit in the terms of what we are dealing with.
Earlier this week, I met with a family that has a teenage boy with Aspergers. He has a high IQ, very smart and verbal, but lacks the socialization, has sensory issues, as well as takes many things literally. The mom and I discussed the differences between our sons even though they fall on the same spectrum. I asked her the question on if she could "cure" him, would she do it? She said that she would not, as so many of his issues are a part of him, a part of his personality and who he is every day. I can see exactly what she is saying! Nobody wants to take away the unique personality traits of their children, but I differ in that I would LOVE a cure for my son! It's not that I don't accept him for who he is...but, seriously, who would actually choose to have their child not be able to talk or communicate with you if they had the choice! I think the difference in our beliefs lies in the difference of their diagnosis'...I don't wish Brycen to not love trains, not have some "OCD," not be very active and smiley...but I definitely wish he could tell me what is wrong when he is upset and throwing things, and I wish I could hear him say "I love you, Mom"...heck, I would even just take hearing him call me "mom" again!

1 comment:

  1. He's working on it, sweetie! He's come so far already. I believe he'll be saying it again. In the meantime don't forget to look for the ways he's SHOWING you he loves you in his own ways, even if it's not things he's doing consciously. :)

    ReplyDelete

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.