Loss for Words...

There was a knock on the door about 15 minutes ago.  As I went to answer it, I was racking my brain on what I had recently ordered that was being delivered or who would be visiting during nap time.  I saw the UPS man getting back in his truck and then saw a package outside the door.  I recognized the return address as that from Ohio and then saw an RA# written on the box...and realized it was Brycen's DEVICE BEING RETURNED!

Tears, tears, tears!  It was like deja vu from the first time his device was delivered last Spring and the tears were pouring then and my heart was racing just as fast.  Only a special needs parent with a child that is nonverbal or has a very difficult time communicating will truly understand why these emotions took over. 

As you know, 9 days ago, Brycen decided to see if his device could "swim."  That's a pretty nice way of saying he took it upon himself to move so fast that nobody could stop him while throwing his device into the Y pool.  I'm a very anxious person and can easily get upset over stuff like this...but for some reason I was very calm that night and the following day until we knew what the outcome would be.  I really do give credit to my anxiety medicine that I started several months ago to help me with this. 

Just 7 days ago, I took the device to the nearest FedEx shipping store 25 miles away.  We had found out his warranty would cover the incident and it would be fixed, so I sent it out to Ohio on 2 day shipping.  Once again, only a special needs parent of a child that is nonverbal will understand the tears that came this day as soon as I walked back out to my car.  I felt like I was handing part of my child off to the lady at the counter...and in a way, I was.  I was handing over my child's "voice"...the one thing that has seemed to slightly help bridge the communication gap between him and the world around him.  I called Mike on the road and explained this to him...and I think he thought I was going crazy!  But I wasn't going crazy...I was trusting some strangers with a huge part of my child's life...a part that I have been protective of for the last 7 months and will continue to be.  I was saying "goodbye" to it without knowing how long it would be before we would get it back...and without knowing how much the absence of the device would affect Brycen. 

Fast forward to today...9 days post "swim" and 7 days post "goodbye"...and it has found it's way back to us!  The notes say that certain parts of the board was replaced, new software was downloaded, and everything was tested.  As I turned it on, I realized they had been able to save EVERYTHING!  His "voice" is back right where he left it (even though I also had most of it saved on my laptop and could have transferred it, but this saves me so much time!). 

Once again, my thanks goes out to the wonderful company of Saltillo!  After years of working with various devices, no tech, low tech, and high tech in my job...and after much thought and research of devices/companies last year, we chose Saltillo for this journey with us.  Since Day 1, we have been nothing but impressed with their services, and of the service of our rep Sue through TalkToMe Technologies.  The software is easy to understand, the device is easy to operate and program, the instruction book that comes along is easy to interpet and follow...and best of all their customer service at Saltillo and from Sue/her coworkers has been phenomenal!  I can't say enough good things about them and encourage anyone that is thinking of a device for a loved one to contact them.  Words aren't even adequate to tell them how thankful we are to have chosen both of them to journey through all of this with us!    THANK YOU!

http://saltillo.com/
http://www.talktometechnologies.com/

One More Step Towards Independence

It's been a long time coming, but I finally took steps towards having Brycen ride the bus home from school (special needs bus).  Today was the first day...and he LOVED it!  He will only be riding home two afternoons per week as I pick him up early the other three days for therapy appointments.  I'm not having him ride in the morning either as I have to take Aubree to preschool Mon-Thurs anyway...and he has therapy on Friday mornings first before taking him to school late.  I think two times per week is a great step in the right direction.  Not only for him getting this experience being independent from Mom and for keeping up his enjoyment of the bus after the last couple years, but also it's baby steps for me to realize he is growing up and I need to be more confident in his abilities away from me. 

Here comes the bus!!  Mommy was so nervous.

Seeing him come off the bus and reach out for me was one of the best feelings in the world!  It was another time where I just saw a little boy coming home from school...not a little boy who is battling so much in this world.  Since I wasn't sure how he had done yet, I did not attempt a picture of him getting off the bus today.  He followed me up the driveway babbling with his own little noises, smiling the whole time.  He continues to do the "thumbs up" every time I mention the bus to him and how great he did.  I think he's reiterating that we made the right choice:)

He was babbling away as if he was telling me a story about the bus.

Can you find the number? Brycen's recent accomplishment!

When I visited Brycen's classroom yesterday morning to check on how he was doing without his device, one of the associates was excited to share that Brycen did great participating in a group activity in kindergarten that morning.  My understanding is the teacher would say a number (and letters too I think) and the kids would write them...Brycen on his dry erase board.  We know that Brycen can write almost all of his ABC's legibly, not only in capitals but some in lower case as well, but we had yet to witness what he could do with numbers.  We recently programmed a section on his device for counting and had included buttons through 10 so he could "voice" how many of something when he is counting on his worksheets.  We had never really worked at home on much above 10, nor had we worked on writing the numbers.

So of course we had to practice at home so we could share all of it with you!  The first time I practiced with him, I just held up a card with the number and he copied it.  Then when Mike was home last night (prior to Brycen getting sick today so he was still on top of his game!), I brought out his binder with the numbers 0-20 that I had printed and laminated on Monday night.  Before I could even show him one, he started writing 0...then 1...then 2...all on his own.  He kept going with just prompts from us "What is next?" and pointing to other parts of the paper for him to write on so he wasn't overlapping so much.  He made it ALL THE WAY to 14 before he was stumped!  So, then I showed him each picture individually from 15-20 and he copied the rest! 

Can you decipher this?!

Isn't that 8 cute?!

All over the place but you can see 13 in the middle, then 14 and 15 and 17 pretty clearly on the right side.  The 16 and 18 were overlapping the 13, but 19 is in the middle on the bottom and 20 is on the top left.

The Alt-Chat CANNOT swim, Brycen!

As most of you already know, Brycen decided to see if his communication device could swim the other night at the Y with his staff.  Yep, he took it upon himself to grab it from the bench and throw it into pool!  We of course will never know why he did this...he wasn't mad or anything, probably actually excited because he was getting out to dry off to go to McDonalds for dinner.  All we know is that Autism has prevented Brycen from developing impulse control and understanding of his actions. 

After quite a few hours of worrying how it was all going to work out to replace it, we did find out yesterday that the Saltillo company WILL fix/replace it under his warranty!  There was never a question about us not wanting to replace it...if we had to go on a payment plan, eat ramen noodles for months, ask/plead for money to borrow from our family...we would do anything to fix his "voice."  Lucky for all of us, we chose a fabulous and understanding company to partner with us in this communication journey and the only cost to us at this point was to pay to ship it back to Ohio (which I did this morning by FedEx).  Now we just wait and see how long it will take to get it fixed or have a new one sent to him.  Transferring the programming will be simple because I frequently updated the software on my laptop with what I was programming on his device so all I will need to do is flashdrive it over to the new/fixed machine.

Thank you for all of your prayers and support through that rough 24 hours!  As upsetting as it was, we know it was not an intentional thing that he did.  We don't blame him...we don't blame the staff...we only blame Autism and what it has stolen from him.  We are so grateful to be able to supplement his life with a "voice" like his Alt-Chat provides for him!  We are grateful for a company that has exceeded all of our expectations in the 11 months since we started this journey with our technology rep. 

Advocating for Brycen

First of all, this post is NOT meant to offend anyone or to speak ill of anybody that works with Brycen.  Ironically, my "give thanks" post for Day 4 of November on Facebook this morning was to say how thankful I am for everybody that has worked with Brycen in the past, present, and will in the future because he would not have as much success as he has if it wasn't for the entire team that surrounds him.  With that said, I am very upset today.  Typically when I am upset, Mike is here to be the calm person but it must show something because he is upset as well with this situation.  Again, I am not writing this post to be negative towards anyone that is a part of this situation, but this post is meant to ADVOCATE and INFORM about my son and his abilities.

I understand that not everybody that works with him today has understanding of how far Brycen has come.  That is the point of this blog...to share his progress or deficits.  We are very involved parents with Brycen and his services and I expect to be updated as much as possible as well as I have expectations of myself to also update those who work with him as much as I can.  I want an open and trusting relationship with everybody that surrounds him.  I want those people to also become advocates for him and for all others with disabilities.  I hope that everyone that works with Brycen can learn something new about Autism.  Once again, that is why I am writing this post.  I need to emphasize this!

At school, they do frequent fundraisers to raise money for a parent committee that puts on events/activities throughout the year (this is my understanding of it at least).  Though we do not have a lot of money with being a one income family, we try to support the schools our kids attend as much as possible because we know how important a good education is and how much schools rely on assistance from the parents.  The recent fundraiser consisted of the children drawing/coloring a picture that could then be put onto multiple items to be ordered with proceeds going towards this committee.  A wonderful idea!!  We already have an annual tradition of creating a snowflake ornament for our own Christmas tree and the grandparent's trees with a meaningful picture of the kids during that year.  I thought that using this fundraiser to do something extra special for the grandparents would be a great addition to gifts this year and I was so excited about it. 

When Brycen's picture came home, I immediately noticed how not much resembled Brycen's skills in this area.  A year ago, it was very difficult to get him to even sit and color at all.  We encourage drawing at home a lot and frequently have pictures taped all over our house of what the kids have made.  It's not that the picture was bad at all...it was very colorful and cute of a fish.  But the details on the picture were obvious it was not Brycen's doing.  Brycen has difficulty right now with writing the letters of his name smaller than two inches, but this picture had a hundred or so very small circles as the scales on the fish.  The colors on the fish were in the lines...Brycen prefers to scribble all over the picture and though he tries to stay within the area of the picture, he has never understood staying within lines.  I knew immediately that he received some (a lot) of help with this picture and that disappoints me because I want to showcase what he can do...not what someone else can do.

The "pictures" my son draws or colors are perfect to us!!  I'm not sure if the people that were working with him on this project though that we would want something that looked more like what other kindergarteners would have, but I would hope we have set the stage this year to show that we are so content with any progress Brycen makes.  Do I need to remind people that he has REGRESSIVE Autism?!  He used to speak, used to color, used to play appropriately, used to interact with peers and he lost ALL of it...so any step we can make towards that again is a HUGE step in our book.  We aren't here to make Brycen into the next President of the United States or a talented brain surgeon.  We want Brycen to be Brycen...and of course encourage him to continue to succeed with the abilities he has.  Brycen is able to do many many things...more than we will ever know because communication is such a key part of most abilities and unfortunately communication is his biggest obstacle so he can't share with us what he knows.  I don't want Brycen to go with the flow...I want him to be challenged using the skills he has to overcome the deficits he has. 

We recently learned he can draw a simple train.  WE had to think outside of the box to realize a train consists of mostly shapes he can draw.  So we encouraged him to draw using this knowledge...and lo and behold a train came from it!  WE need to adjust our thinking...WE need to encourage him...WE need to advocate so he can be the BEST BRYCEN HE CAN BE.  And if that means he could only handle a few scribbles the day this project was completed, that's OK.  That's valuable to us...that depicts who he is and what he can do.  Whether someone else things that is imperfect, then that's their problem.  Obviously you can tell we will not be ordering an item with this picture on it as wonderful of an idea as it is.  That's unfortunate because we were willing to spend the little money we have on this fundraiser too.  But I just can't fathom putting Brycen's name on something that is not his work...something that would be a part of his grandparent's kitchen or living room for years and years.  Maybe not all parents feel this way, but this is how we are.  We love our children and the uniqueness they bring to our lives whether it's a scribble or not!

We are not only Brycen's parents but we are advocates for he and many others with disabilities.  A key to working with those with disabilities is to acknowledge they have some deficits/differences and then to search for their talents and abilities to help them work through those deficits/differences.  Heck, isn't this the key to working with anyone?!  Nobody is perfect!  I am here to advocate for my son for the rest of my life.  It's not a paid position like my old job when I worked with others with disabilities...it's a volunteer job that gives me far more than I could ever receive from a paycheck.  Because of Brycen, I have passion, motivation, patience, and emotions that I never knew I could have.

WE THINK BRYCEN IS THE MOST PERFECT BRYCEN HE CAN BE!