My Son's Voice

I think it's fitting that the 200th post on Brycen's blog is about his "voice" considering communication is where he has the most deficits from Autism.  In a way, I am amazed at the number of 200, but then again there is so much to share about Brycen and how Autism affects us, that I'm a little surprised that number is not higher!

When Brycen was initially diagnosed, I wasn't even thinking about communication devices.  As you all know, he had quite a few single words and phrases prior to regression, so I guess I assumed once we began getting him the therapy he needed, those words would come back and then some.  Well, that's not how it worked for Brycen.  There are still many words that he used to say that he isn't even attempting to imitate at this time.  More importantly, he still can't say many words spontaneously and will only attempt them if prompted in some way.  Then when he does speak them, quite a few sounds are missing so unless you speak "Brycen language" you probably would not understand anything he is saying.

A little over a year ago was when we first began discussing a communication device.  His first school brought it up during his IEP in May 2010, and the initial device they spoke of was very very basic.  It used multiple cards that had a picture on the front and back...and on the bottom of the card had a strip that would be "read" by the machine when the card was placed on the machine.  The cost was under $75 for this device and it's cards.  We just weren't sure about it and about the benefits of having one yet.  We researched different machines over the next few months and saw that studies showed nonverbal children who used a voice-output device were more likely to start verbalizing than children without one.  Research also shows the earlier you implement the device, the better the results are. 

Fast-forward to the next school year and a new therapy clinic.  The new speech therapist that Brycen began seeing immediately began using the Go-Talk with him during sessions.  He was still using basic PECS at school and some at home as well.  Brycen caught on fast to the Go-Talk 9 so we began discussing what the next step was.  The SLP brought in two different reps to meet with us as she felt that Brycen would outgrow most of the lower tech devices fast, and we both thought a higher tech device would be best since we can program it to keep up with him.  In January 2011, we chose to go ahead with the Alt-Chat made by Satillo.  He responded fabulously to it during our 4 week trial period and we were blessed to have insurance approve it with no hesitation.  On March 23, 2011, my son received his "voice."  It was delivered to the house in a box that we will keep forever!

Brycen with his trial device.

Since that date, like research said, Brycen has begun to imitate more sounds and words, and communicate effectively with the machine.  We knew that to make the most progress, it was important that the device be used in all areas of his life...therefore his device goes with him to school, therapy, is out at home for when he needs it, sometimes to the store, on overnight trips, to doctor appts, etc.  Brycen knows that machine inside and out!  He can navigate the pages to exactly what he wants to say faster than any of us. 

Using his device to play CandyLand with Grandma

Recently, someone commented to me about how protective Brycen is of his device and my response was "You'd be protective of your voice too!"  The Alt-Chat IS Brycen's voice.  It may be man-made, but it has the capabilities of doing the exact things that your voice can do for you.  Just like it takes a child years to gain verbal skills with different sounds, it's going to take Brycen some time to learn all that this device is capable of.  The possibilities are endless!  Just like you have to sleep at night to "recharge" your voice to be ready for the next day, we charge Brycen's device in the evening so it is ready for him.  I remember losing my voice many times while having a cold and it was very hard to function.  I could not answer the phone and it was FRUSTRATING!  The same would be for Brycen and his "voice" AKA device!

"Fixing" Autism- YouTube video

Below is a link to a YouTube video that Mike's cousin sent me (Thanks, Nicole!).  It's such a simple video with a wonderful message.  A similar story to Brycen's about the initially meeting milestones, and then stopping and regressing.  All of those things on the cards are true...so much is a battle between therapies, funding, research, school, and so on.  It is my life to fill out that paperwork, to make those phone calls, to shuttle him to and from therapies, to file the neverending paperwork just to keep his services afloat.  The books I read, the college classes I took, and even the years of work experience I had never fully prepared me for what it is like to parent a child at Brycen's developmental level 24 hours a day, 7 days a week, 52 weeks per year...for the rest of my or his life. 
"Autism" may have silenced my little boy's verbal communication, but I can guarantee it is not going to silence our fight!  Brycen will be the best Brycen he can be!

http://www.youtube.com/watch?v=z2B1FeS5VX4&sns=fb

The First Days of Kindergarten

It still seems unreal that Brycen is old enough to be in kindergarten!  It is so true what they say that time goes so much faster once you have kids. 

Earlier this week, we took both kids to the school for their open house and to meet the teachers.  Leaving the house didn't go so well that evening as Brycen was not happy about going to the school.  He knew it just wasn't part of his routine going around supper time.  Once we got to the school and when Daddy met us there after work, he was much better and enjoyed being in each room.  Since he will be in both the special education room and the general kindergarten room, we had two teachers/rooms to visit, as well as the room for Aubree's 3 year preschool that will start in a week.

I knew that Thursday morning would be very hard for him...so I spaced the morning preparation out throughout the evening before and morning. I packed his bag the night before and showed him that and what he was going to wear. After breakfast, I then proceeded to getting dressed which was quite the challenge between the hitting and running from me. Aubree and I tried to get him excited with a "kindergarten" song in imitation of an episode of Curious George, but he just yelled at us more. Eventually he did put on his new school shoes and very reluctantly carried his backpack out to the car. As soon as he saw the camera, he took off running out the door and even showed me when he is mad enough, he can open the car door by himself! I was NOT ready for that yet (though Daddy disagrees and thinks it's a good milestone for him). As you can see below, I did finally get a few pictures of him but of course not typical "first day of school" pictures:(

Showing me his new skill of opening the car door on his own (while trying to get away from the camera)

Signing "all done" over and over as he really did not want to be bothered with the camera.  Isn't this morning stressful enough, Mommy?

FINALLY a decent picture after I had him trapped in the car and snapped it very quickly when he looked at me.

When I picked him up from school yesterday, he was all smiles!  Since daddy couldn't be with us, I took him to daddy's work so we could read Brycen's communication book together (and the teacher said there was a message on his device for us as well).  I attempted to ask him questions about his day, but he would just smile and look out the window while we drove.  This is the part that really tugged at my heart yesterday!

Today, he was all smiles this morning when I got  him dressed and ready for school.  He got out of the car in the drop-off zone and walked in with an associate with no problems.  When I drove into the line for pick-up, he saw my car and started pointing from the sidewalk which made me excited to see some emotion from him to see me.  Again, he of course could not answer my questions about his day though he was smiling again.  When we came home, his teacher had recorded another message about something he did today which I really appreciated!

I know this is a happy time in our lives with a new journey for him starting kindergarten, but it still makes me sad.  Not being able to tell me about his day, if he was sad or mad, what he liked best, what he ate for lunch/snack, and so much more.  I just always took it for granted that I would have those same conversations with my children like my parents had with us after we came home from school.  I really do appreciate the teacher attempting that communication with me though through his device as that does ease the pain a little.  I just wish it was his little voice I could hear telling me about the slide outside or playing on the computer!  I know that as the years go on, many of these types of moments will come up...and I know that the pain is never going to go away.  The pain is different now than it was a couple years ago.  It's not a striking, unbearable pain that overtakes my mind and body for days, weeks, months...but it's a dull ache pain that is just in the back of my heart that reminds me that things are just a little different than what I imagined my life as a parent to be.

If you are reading this and have school age children that can communicate to you, please take the time to talk to them about their day.  Don't take it for granted that they can tell you what made them happy or sad during school!  Then give them a big hug (just like I have done the last two days after picking Brycen up and getting home) and thank God for the blessings that we have all been given!

Physical Therapy: A New Journey

As some of you know, Brycen did not crawl until after he turned one and did not walk until almost 18 months old.  At the time, he was on track with all of his other development so it really wasn't a concern to the doctor.  About 6 months after he started walking is when he began regressing in all of those developmental areas.  He continued to have some issues with gross motor skills such as climbing stairs and jumping.  While he has come a long way in the last couple years with being able to climb stairs upright correctly (though his balance is unsteady at times or when he is carrying something) and he can now jump enough that both of his feet come off the floor slightly, he is still behind in so many areas. 

We have been so focused on his communication and other skills that we just hoped the physical skills would eventually come with some work at home.  His older cousin, Ethan, passed down a bike with training wheels to Brycen a couple years ago and Brycen absolutely loves it.  The problem is that he is 5 years old and still unable to pedal not only that bike, but a big wheel that he received a couple years ago also.  When we put him on the bike, he just rocks his body back and forth.  When we push on his feet on the pedals, he doesn't do anything.  So we just resort to pushing him around while he screeches happily for the ride. 

Last summer, we decided to get him a motorized tractor for his birthday that has a big button to push down with his foot to make it go.  Aubree was also given a motorized power quad for her birthday but the button to go is up by the handle so you just use your thumb.  We noticed Brycen still couldn't figure out how to push his foot down to activate the tractor though he did figure out how to use Aubree's quad.  Unfortunately, he is pretty big for the quad.  Fortunately, he doesn't seem to mind that he can't get his tractor to go and will just sit on it making those happy noises again! 

So over the last year, I have listened to parents talk about children younger than Brycen learning to ride a bike with training wheels and some even learning to ride without.  Some of these children also have ASD's and it reminded me about how he still can't catch on to pedaling.  It's like the wiring between his brain and his legs just isn't connected.  While he doesn't seem to understand all of this yet, I know that it won't be long before he notices other children riding their bikes around him.  I also remember riding a bike through my entire childhood...and to me it's a huge part of growing up.  Having a bike, learning to ride, enjoying the summer with friends!  Brycen has been missing out on so many things already that are a regular part of being a kid...and I refuse to add riding a bike to that list. 

This is where the new journey comes in.  I requested an order from his new doctor for a Physical Therapy evaluation at the clinic he goes to.  I already know who the PT is there and she knows Brycen so it wouldn't be a hard transition.  Tomorrow is the big day for the evaluation and since we've already talked a bit about it, she understands it's the pedaling, jumping, and balancing that he needs to work on.  To the public eye when we are taking a walk, it doesn't seem like Brycen has any obvious deficits since he can walk, run, etc just fine.  But we've let these "hidden" things go on too long now.  We thought it would slowly come, but after a couple years of working on this ourselves, he has made no more progress and it's not fair to him.  We aren't trained to be physical therapists, we are just parents that want the best for our son.  If that means we will be adding on a couple more therapy sessions a week until he catches up, then so be it.  While so many kids his age are out and about, riding their bikes and beginning to play in soccer and t-ball leagues...we will be taking him to and from therapy so he can work hard at learning those things that are supposed to come naturally to children. 

More of the ABC's!

 A couple weeks ago,  we noticed that Brycen was really starting to comprehend the order of the ABC's.  He is still doing awesome at attempting to verbalize each letter, as well as he now recognizes both upper and lower case letters.  He can trace all of the letters and write the letters in his name somewhat legibly with multiple verbal prompts (but without tracing needed).  We are working towards him writing his first name completely independently and I am confident he will succeed at this shortly after school starts next week.  My mom was working on verbalizing the ABC's with him recently and found that he actually does have the order memorized like other kids his age.  She would just ask him what comes next and he would pause before verbalizing the correct one.
Today, while Mike was home on lunch break and making his sandwiches, he told me to look at Brycen by the fridge.  Above is what we found him doing...slowly but surely he put the ABC's in order with the fridge magnets.  We are so proud of him and all of his progress over these last few months!  While we aren't hearing much more verbally from him, we are noticing so much more through his actions and responses.  He is taking in so much from his interactions with others and showing us that he is learning through moments like this.  He works so hard every single day to do these things, and sometimes we don't give him enough credit for what he really can do by himself.