"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

Tuesday, April 24, 2012

The Reality of Having a Nonverbal Child

Brycen and his kindergarten friends went on a field trip today to a local nature center.  I love how much this school gets the kids out into the community whether it's attending the Homecoming Parade, to the local theater to watch a play, and a big trip to the zoo last Fall.  Mike actually had the chance to go on the zoo trip and had tons of fun!

When Brycen came home on the bus today, I attempted to ask him questions about the trip to the nature center.  I started with yes and no questions but he was too distracted to answer anything.  I showed him his lunchbox and asked him if they ate outside on a picnic but he ignored the question.  I asked if he went on a walk with his associate and kindergarten friends, and this caught his attention but he just stared at me.  I then asked him if he rode the bus to the center and he finally said "ss" which means "yes."  At this time, he had enough of the questions and just wanted to watch a train video like he does on the days he doesn't have therapy after school...he grabbed the video and thrust it into my hands, yelling and pointing at the TV.  Of course I knew what he wanted because it's the same thing every time he wants to watch a video so I did as he "requested" after I prompted him to sign/say "please."

I then left the room (of course not very far as I rarely leave the kids in one room together without supervision due to Brycen's aggressive behavior) and my chest felt heavy & my eyes filled with tears.  I don't want the kids to see me cry.  I don't want myself to cry...but it's inevitable because it's one of those days when reality has hit me.  It's slapped me across the face causing a sting that will continue for a long time...reality that the sting I first felt when Brycen lost his language 3 1/2 years ago is still a dull ache, and each of these moments just keep adding to that original pain.  It doesn't matter how much I accept "Autism" or how much I know about it or the possibility that someday he will talk again...it still hurts and nobody can tell me to feel differently. 

He's almost 6 yrs old.  Completed two years of special education preschool and almost one year of kindergarten.  Been in consistent speech therapy outside of school for two years.  Received an amazing communication device a year ago.  Had genetics testing (nothing in results).  Sees a psychiatrist who prescribes a daily medicine for him to decrease his anxiety and stimming in hopes of seeing results in his development such as speech. 

Nothing has brought his speech back.  Nobody can even tell me what to expect with his speech in the future. 

I appreciate all of those people involved in all of the above things and the time they have given us to help him improve in many areas!  AND I know he has improved in other areas of communication such as gesturing, some simple sounds, eye contact, usage of device to mostly answer questions, and recently a few general comments on the device.  But he is still nonverbal.  He still can't tell me about his day like other kindergarteners are telling their parents right now about the field trip and all that they did and saw.  He can't even say "mom" correctly and without prompts (it comes out like "bom" and he ALWAYS has to be prompted by me to say it).

I'm not saying these things for pity.  I don't want you to feel sorry for me...or for him.  It is what it is.  We don't need sympathy.  We need action...we need help...we need understanding...we need support...we need cheerleaders. 

I love my son more than anything in this world and I accept him for who he is.  But if I was granted one wish today it would be to give my son his voice back.  Let me have just a few minutes after these special events so he can tell me what his favorite part of the day was like most other children are able to do.  Maybe I'm selfish as maybe he'd prefer to not have a voice and is happy the way it is...but I think every mom has the right to hear "Mom" once in awhile and every parent has the right to have a conversation with their child at the end of the day.  That's something every parent looks forward to the day they look into their child's eyes for the first time, right?!

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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.