Brycen: The Joys and Challenges

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?!

Friday, April 20, 2012

A "Hairy" Success

A couple months ago I shared that Brycen had received a weighted compression vest from Fun & Function after one of his Occupational Therapists had suggested it might be something to help with his sensory issues. We have had some wonderful success with it and I was looking forward to any help we could get to help him conquer the dreaded haircuts. We have worked through 3 home haircuts since receiving the vest...and each time I add in the weights a few minutes prior to starting the haircut.

I am so happy to share that I am confident the vest has helped him work through the sensory issues that were plaguing him during a haircut! I didn't want to share the success until it happened enough times that I was positive it was the contribution of the vest. He has even been so good about haircuts that we were able to add in the use of the electric razor every time which was such a hassled before with one of having to hold him down in order to use it to trim up the edges.

The haircuts still aren't "perfect" per se...he still gets quite fussy and stimmy during the parts around his ears and on his neck...but today he didn't even try to push me away once! He just fussed a little and scratched his hands on his cheeks like he does when he is upset with something, but he worked through it. The good news about using the razor and not having to hold him down or push his hands away any more means we went from a haircut taking 20+ minutes to only 5 minutes AND my stress level has decreased tremendously before, during, and after the haircuts!

Thursday, April 19, 2012

Fighting Autism One Skill at a Time!

I don't even think I need to explain how amazing this video is! I'm sure the Autism parents, teachers, and therapists that watch this can make a list of how many positive things they see in this 30 second glimpse of what happened at our house this evening. Many people have worked hard over these last couple years to help Brycen with his social skills and other areas...and through this video you can see all of that hard work paying off! These moments are very very rare in our household where Autism seems to take over even the simplest of interactions between our children. Not only are we impressed with Brycen, but the patience and skills that Aubree is demonstrating just shows how much she has internalized over the last couple years of participating in his therapies and our day-to-day life. There is no doubt in my mind that our 3yr old girl will choose a career path in an area that works with those with special needs in some way! These are the moments that continue to push us along this path of building Brycen up to all he can be and continuing our fight against Autism one skill at a time!