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?!

“A goal without a plan is just a wish.”

“A goal without a plan is just a wish.”

Larry Elder Obviously Brycen is making progress across the board because we have changed his goals recently for Occupational Therapy and Speech Therapy at the clinic, as well as Speech Therapy at school.  Occupational Therapy is mostly working on fine-tuning the skills he has...such as completing the entire act of zipping his coat (pretty much done), as well as building strength in his arms throwing overhand, working on decreasing the size of his writing skills (can write all letters and numbers, but size is quite large and all over the place), and then learning how to write his phone number and address (he can already find the info on his device, but we want him to know how to communicate it without his device).  In both Speech therapies, we are focusing on more functional communication and using his device to form phrases (stringing at least 2 buttons together) and to make more than just requests.  After discussing this with multiple team members this week, I came home yesterday mentally exhausted on how to start all of this.  It seems easy, right?!  Just program a bunch of words in a page on the device?!  Well, to be honest, it's so much harder than that.  I thought I knew not to take spoken language for granted a couple years ago...but I'm starting to REALLY see not to take it for granted as we progress along with his usage of the AAC device, but not progress along much with his spoken language skills.  Programming basic words in the device is easy...it's categorizing them into pages that he will understand (verbs, nouns, adjectives), and keeping up with what typical 5 yr olds comment or discuss with the people around them on a daily basis, while also not overwhelming him with the entire process.  Using an AAC device just isn't "natural" like spoken language is to the majority of people...there is a learning curve that goes much deeper than the curve associated with spoken language. I spent this morning googling a bunch of websites about "core language"...and was lucky to stumble upon an awesome site that actually focuses on the stages of language and how to keep adding on to each stage as he learns!  Very excited to research this more and get started on this new "stage" of Brycen's development with his AAC device! http://www.aaclanguagelab.com/ So like the quote above says...we can't set a goal without a plan on how to achieve this goal, otherwise it's just a wish of what we want for him!  It's about our action and motivation to achieve these goals WITH him!

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/

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. 

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!

Brycen and his Communication Device!

Brycen has been awesome with his communication device since his came almost two weeks ago! We are so blessed to have had insurance cover this so that he can have a way to communicate more than his grunts, pointing, and yelling:) He has been taking it to school each day and to therapy twice per week and is so consistent with it. Of course the therapists are excited to use it with him since they had a big part in helping us get it! The teachers and school SLP are also very excited and have been brainstorming various things for me to program for their use at school. We were so excited to read the great note that his teacher wrote in his communication book today that goes back and forth to school in his backpack. "Another child was grabbing at it, Brycen pushed the button that said 'This is my communication device to talk...' He was standing up for his rights and knew what he wanted to tell her." Up until this time, the device has just been used to make choices and encourage various requests like please, more and thank you. This is the first time that we have heard/observed him using the machine for functional communication!! How amazing is that to not only have him stand up for what he knew was his, but he also did not choose aggression to communicate (which is usually the case)! ABC update: He continues to work on this multiple times per day and is getting so good at it! We tested him on an ABC game on the computer where it will say the letter when he pushes it on the keyboard...and he actually chose to do it in order of the ABC's with my help on only 3 of the letters! So not only can he voice the sound of the majority of the letters, but actually does know the order they go in during the song. He can also type BOTH his first and last name on the computer or the keyboard on his device accurately about 75% of the time. He's great at first name but still learning the entire last name and sometimes wants to put the R before the E or forgets one of the M's. We are so very proud of him and his accomplishments over the last several months!!

Delivery for Mr. Brycen Timmer!!

The doorbell rang today just minutes after we arrived home from therapy and grocery shopping. Brycen ran to the window to look outside as I was opening the door to greet the UPS man. He informed me that he needed a signature for Mr. Brycen Timmer that was 21 years or older. I told him I wasn't even sure what was coming because the most recent things I ordered online shouldn't be here for a couple more days. He specifically told me it was probably alcohol as that is usually why someone has to be 21 to sign for a package like this...but as he was saying this, I noticed the small label on the top of the package and it said "Talk to Me Technologies" and I had instant butterflies in my stomach. I told him that this package was far better than any alcohol could ever be!
I ripped the box open and there was Brycen's beautiful, light blue, brand new communication device!!! I was in absolute shock as it has only been 5 weeks since we completed the trial period and sent the trial device back to the company. The last I had heard from the rep was when they called a couple weeks ago to find out what color we wanted the device to be, but I had no clue that the ordering process with insurance would go this fast! I immediately called our rep in Cedar Falls to make sure I wasn't imagining things and she confirmed that yes, it was approved and she was absolutely delighted that Brycen will have this now. She made reference to the programming we did on the trial device (which they saved and transferred to his new one!), the journaling on the trial period that we kept to show how he was using and progressing on the device, and how she felt we obviously wanted to do what we could for Brycen to give him this opportunity. To hear these compliments from someone that barely knows us made me feel so good!
So after I unpacked the device and showed it to Brycen, he immediately turned it on and "told" me he wanted to go play with trains (in his room). I had tears in my eyes as I realized he had not forgotten how to use the device! As most of you know, Brycen has had difficulty in the past remembering things that are taught to him and he tends to "lose" signs, single sounds/words, or even actions or tasks we teach him if it is not part of his regular routine. The fact that 5 weeks have gone by since he last used the device, and that he immediately used it today with no prompts just reiterated to me that this is what he needed. We contemplated this for so long and wondered what the right choice was for him, but now I know WITHOUT A DOUBT that we have made a very informed choice by choosing the Alt-Chat for him.
I'm so excited to see what the future holds with this and to share it with all of you in the coming weeks, months, and years...because it is ALL HIS!!

Brycen's latest happenings!

A few things to update from the last week or so...

1. Brycen is doing GREAT with his trial device! He knows how to navigate from page to page, how to clear the words, and how to turn it on/off. He uses it at home every day, has used it at a few speech therapy appointments, in the community a couple of times, and at school during Kindergarten round-up last week. I am also sending it to school with him this week as it is our last week of the trial and I think he is ready for it. The teacher and associates are just as enthusiastic about giving him a voice in place of the basic PECS cards he chooses from. I programmed in a few of their circle time activities so he can just push the button to tell them what "job" he wants for the day and what kind of milk he chooses for snack. Next Monday is his last day with the device and then we just sit & wait while people that don't even know Brycen make a decision on if this is the right device for him, will it benefit him in the long run, and will they pay for it. Very scary to think it's a possibility that it could be denied:(

2. We had a conference on Monday to discuss options for Kindergarten. It was agreed upon that Brycen will attend the every day/all day kindergarten class next year. While he cannot do all the things that the typical child going into kindergarten can do, he needs that consistency of all day/every day to make progress and keep his routine in place. His "score" on the kindergarten testing was actually a 22. When his teacher showed me the rating scale, the lowest category was 25 which was the bottom part of the 3 1/2 yr old level. While you would think this would upset me to see his score not even be on the chart, it actually reassured me that we know exactly where he is developmentally. 1 1/2 years ago at U of I, he was at a 16 month old level with communication...last summer at his first speech evaluation, he was at an 18 month old level...and now it seems like we may be getting closer to the 2 yr old level. While his actual speaking is not at this level, his other ways of communicating and understanding what is being asked of him is progressing him along. The discussion will continue over the next few months and through his IEP meeting in May about having a 1:1 associate with him. The feedback so far is that it is very important to do this to set him up for success!
In addition to all of this great news, we also learned that Brycen DOES qualify for Extended School Year! Last year, the old school district was very adamant that he had to show regression following an extended break from school before he could be approved...but this district says he meets other standards that qualify him. Mike and I hadn't even asked about this yet and were very surprised when his teacher pulled us aside in the hallway to let us know they discussed it. This is just one more thing that proves this school is very good at advocating and supporting special needs. He doesn't need to be in a secluded special needs school to get the support he deserves if he is here! We aren't sure of the dates yet, but I believe it is spread out over the summer over a few weeks. It'll be so beneficial to him to keep that "foot in the door" so to speak. As a parent, I will do anything in my power to prevent regression again. We've "been there, done that" when he was 2 years old, and when the district told us this last year, I was on a quest to get other services to keep him going (which is when we started speech and OT at the old hospital clinic). I don't care if that would have prevented him from qualifying then, but I would rather him be home all summer and me have to work my tail off to help him stay at his level, than to risk him going backwards again.

3. On a not so good note, Brycen did one thing yesterday that I have been dreading. When I had my back turned to him while putting on my shoes, he opened the front door on his own. We have been lucky in that his fine motor skills have not allowed him to do this before, but I guess he has now figured it out. As you recall, we recently started having him wear an identification bracelet for when times like this would come. He does not understand the lock on the knob yet, so we are safe for the time being as long as we remember to keep it locked. He is also very cautious about being away from us still, so hopefully that will be in our favor with this newfound skill. It's just really one of those moments that scared me and made me realize how important it is for us to be one-step ahead of his progress. I think we are doing pretty good so far and hoping we can continue to do that in the future as he gains more "skills."

4. Brycen has been consistently taking his new medication for the past 2 1/2 weeks. After some trial and error, we found we have to mix it with chocolate milk to hide the bitter taste. While we haven't noticed any improvements in his OCD behavior and anxiety, we have not noticed any side effects either. She did say it takes up to 4-6 weeks to see results and because he is on such a low dose, we have the ability to increase it too. We return to see her the first week of April to evaluate.

4. Here is the link to Brycen's team page for the Iowa Walk Now for Autism Speaks that takes place on Saturday, June 11 in West Des Moines. We have 23 walkers signed up already and would love to have even more come out and support him during this special day. We are also asking that everybody consider a donation to the team. No matter how big or small, every dollar counts towards research and support of those diagnosed. The statistics keep rising and it's very scary to see that...and we need all the help we can get to the bottom of this disorder! We NEED your help!
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0

Catch a Glimpse of Brycen Communicating!

I am so excited to share with all of you how much Brycen likes his trial device! He uses it many times each day, whether it is to ask for a certain snack or to communicate what activity he wants to do. We have programmed some routines in there, and despite the fact he knows all the steps to his routines like getting ready for bed and leaving for school, the SLP said it is good to still have those things to use because it is a step towards functional communication. During his speech therapy this week, she explained to me that what we have programmed right now is a great first step (mostly choices he can make, basic commands, and routines), but that eventually we want to be programming things like "Good job" and "What should we do?" so that as we are saying these things to him, we are also pushing the button. It's very similar to sign language for those who have worked with this.

Anyway, Brycen has initiated using the device many times over the last week. He knows how to turn it on, how to clear the words, how to return to the home page, and of course how to access the pages for snacks/drinks/toys. He has used it at home, during therapy, while at the library with my parents, and today he used it at school. The requirements of the trial period is that he needs to use it in at least 3 different settings and we need to document a journal about how he is using it, any prompts he needs, progress made, etc. I believe this journal will then accompany the doctor and SLP's medical orders for the device to the insurance company. We need to obviously show them that this device is a need for him and that it will benefit him in many ways.

I have posted some pictures below of Brycen using the device tonight. I tried to capture as much as I could with still photos, but eventually I will attempt a short video so everyone can see it in "action."

The photo above is of Brycen pushing on the "drinks" button. He had started yelling and pointing to the kitchen, so I asked him to get his machine and "tell" me what he wants.

After the "drinks" page opened, he then pushed the button for "juice" and then proceeded to go into the "snacks" page to tell me he wanted "popcorn." If you look very close at the top of the device on the "drinks" page, you will see where it has written out "I want some juice." These are the words that the device is programmed to say outloud when he pushes the drink button. I choose and program each picture from the Boardmaker library that is loaded on the device, as well as I program the message it says also. There is also an option to load our own pictures onto the device through our computer which I'm sure we will take advantage of when we get his permanent device.

On the picture above here, I asked him to show me the "toys" and he had cleared the snack page and went to this page which has pictures of various toys we play with at home, as well as the red boxes on the right of the page are basic commands like "help", "more", "all done", and "please."

So, there it is! You now have a glimpse into this wonderful handheld machine that has captivated us and will be giving Brycen such an advantage in his communication. We only have the machine until the 21st and then it will be sent back to the consultant in Wisconsin and passed onto another family that is needing a trial. At that time, TalkToMe Technologies out of Cedar Falls will be gathering all of the necessary documents and sending them into insurance. Then we just wait to find out if they agree that this is the right device for Brycen. It could take months as it will first be ran through our private insurance, and then through Medicaid. But we are so willing to wait! If we have seen this much from Brycen in just a week, I can't even begin to imagine what we will see in the months after receiving his own device!

Looking Back at 2010 with Brycen...Looking Forward to 2011

I cannot believe that 2011 is already here tomorrow! So much has happened in 2010 with our family and so much of it is positive.

When we started 2010, we were still so unsure about what the next steps were with Brycen and his treatment. We were unsure about who was really supporting us and who we could count on. As the year progressed, we became much more confident in our decisions with him and our life in general.

We started speech and occupational therapy in a clinic separate from the services school has for him. We decided to face our fears of trying medication with him for sleeping at night. We also faced a huge fear of most parents of children on the spectrum by moving across the state to a new town, new home, new school, new therapists, etc. Even though the move was a choice made by Mike's job/bosses, I really think it was in Brycen's best interests in so many ways.

Since we have moved, we have NOT endured one of those extreme meltdowns that used to last an hour or longer where we had to hold him down to prevent him from harming himself or breaking things. Of course we have had some pretty good temper tantrums, but nothing to the extent that we know it can be.

Overall, I feel like we have so much more support from the new school, being closer to our family, and from the new store that Mike works at. We loved the therapists at both places, but I even feel more connected to the clinic here with all the "extras" they have been teaching us with Brycen such as the brushing therapy and the introduction of the Go-Talk device.

Our new doctor has been very supportive in helping us find a psychiatrist to see Brycen in January that travels to the area to prevent us from having to drive too far. We have the Genetics testing lined up for February with U of I. I just really feel like we have made so much more progress in understanding what our options are and what we are ready to try.

I also wanted to update everybody on the status of our decision for the communication device. We have been discussing devices for at least a year and were originally looking into much simpler devices than what we ended up choosing. The stress that I was having was not over the question of whether Brycen is ready for a more high-tech device than the Go-Talk or using just PECS...but over the decision on if I was choosing the best device for him that needs to last him at least 5 years due to funding purposes. Of course, every parent dreams that in 5 years their non-verbal child will be talking and communicating without the need for a device, but we also want to be realistic and we know that even if he is verbalizing more at that time, he will probably not be able to have functional communication and will still rely on a device for many years to come. The reality of all of this just hit me hard the other day and I apologize if it seemed to give the wrong idea to people. We KNOW Brycen's ready for a device...we know the limited funding we have available and how long it lasts...and we know that if we don't move forward, we risk more regression and only maintenance of his skills. We want to challenge him, but not overwhelm him. We don't want to just maintain his skills anymore. We want to see more progression if that possibility is there.

So many people have mentioned to me about staying positive about his outcome and to look at all the great things he can do. I'm trying to take all of that advice in and finally came to this conclusion: I'm sick of complaining about Brycen not being able to talk to me; I'm tired of wondering if we are doing all that we can for him; I'm frustrated with people thinking I am not positive about my son and his qualities. So instead of feeling sick, tired, and frustrated about the situation with the lack of communication, we are going to do something about it more than what we are already doing with the extra therapy outside of school. We can do this by getting a device for him that will let us be able to program it to a simple form like that Go-Talk, but also have capabilities to see him through independence with communication. Maybe he won't ever get to the point of using all of the features the device has...but I refuse to sit back and wonder for another year if we could have made more progress if we had just pushed him a little bit further.

Our final decision was the Alt-Chat as we loved how light it was, how easy to transport, how we can do the programming through our own PC and then load it to the device, the extra features it had, his reaction to the device when we showed it to him, etc. Once Mike and I came to this conclusion the other day, it was complete relief. Of course, we need to wait for the trial device to be sent to us which we can utilize for up to 4 weeks. Then we return the trial device with our "final" decision to the company and after getting an order from his doctor and from the speech therapist, as well as Medicaid approval, we then wait until his own device is sent to us. This could take a couple months so I am not anticipating starting this until at least March or April, but in the meantime, we will continue to expand on what we can with the Go-Talk at his therapy sessions.

We can only go forward. No more going back!! 2011, here we come!

Which one is right for Brycen???

I thought some decisions in the past were hard, but I think this is by far the most difficult decision we have ever had to make. While some people (including myself until recently) think all of this would probably be easy because all we want is for our son to be able to communicate with us, I am finding out it is so much more difficult than any other decision we have ever had to make for him!! Choosing to get him evaluated by an Autism team was easy, choosing to start speech and OT was easy, starting PECS was easy...ok, so none of this is really "easy" because it all comes with a lot of emotions, grieving, acceptance, educating, adjusting, etc. But all of these were just a given when it came to Brycen's diagnosis and since we live in small towns, we don't have options of various therapies so you take what you have available...and lucky for us that we have loved both of the places he has received his speech and OT.
Now we are making a decision that could either "make or break" his communication skills. The decision to start medications has been hard, but with medications, we can do more trial and error over time. With this device, the decision we make now has to be the right one for at least 5 years. It's almost like investing in a car or house...will it fit our needs, does it have enough room to grow with us, will it be durable and reliable...so many things to consider also with a device. We have to take into account things about Brycen that we aren't even sure about because he can't tell us! We commit ourselves to something that we think meets his needs and he can use, but what if we find out in a year that the other device's options seem to meet his needs better at that time?! We can't just trade it in and get a new one like you can a car or even a house!
We already made the decision several weeks go that we needed to go with a higher-tech device because of the "5 year rule" and we knew we wanted to meet with two different companies to view at least 2 different machines to make comparisons. Those were the easy decisions:)
I am getting so emotional and so stressed out over this decision...I keep crying when I think about the possibility of it not meeting his needs or of him getting frustrated with it to the point of causing him to regress. I don't even know who I can share these feelings with because I don't know how many people really and truly understand how much this is affecting me. Even the two reps we have talked to don't have "personal" experience with choosing one. Our speech therapist has been wonderful to be at both of these appointments, to do her research, to ask amazing questions that I would never have thought of by using her experience with other people/kids and devices. I'm crying just typing out this post because of how worried I am. Choosing something like this should make me feel excited and make me feel like I am opening up doors for Brycen that he doesn't have right now...so why do I feel like a failure as his mom when I am upset about it??
I do want to explain that both of these machines have wonderful capabilities to grow with Brycen! They each have pros and cons, they each are very visual for him, they each can be adapted somewhat to meet his needs and have some special features that we know would benefit him. The problem is that each person that needs a device is so unique and these companies do what they can to mesh that into one machine that could work for the majority of people. If I could take a few features of the first one and add that to a few features of the second one, then this decision wouldn't be so hard because I KNOW those are the features that would benefit Brycen now. But that's another problem I am having...what may benefit him now may not be the things that will work for him in a year or two! I have to take into account so many aspects of his life, the different situations he will use the device in, how easy is it for others like his teachers and my mom to use with him, will I get frustrated programming it (because if he sees me frustrated, then of course he will become frustrated), the fact he "sees" things in vertical not horizontal...so much to consider and of course there are those unanswered questions we have about what his next 5 years will be like and how much he will progress, so how much can grow with him! When I talked to Mike after the appt today, he immediately asked how did Brycen react to the machine today and that should help make the decision. I wish it was that easy...but unfortunately, Brycen was having an "off" day today. We noticed before even showing him the device that he was mellow, not verbalizing any sounds, didn't even run down the hallway like he always does when we head to the therapy room. The other time, he was happy, verbalizing a lot of sounds, using his few signs more, etc. On that day, he took over the machine and used it like he knew exactly what to do. Today, all he wanted to do was rub the smooth surface, push a few buttons, and then ignore it. I can't even let that help me make the decision since it was obvious his mood and abilities were completely different each day.
Just reading over this is making me cry again so I think it's time to finish this up. Below you will find links to both devices...unfortunately the links don't give you a real picture of how it can be used and what we will have programmed for Brycen, but at least you can see what I am contemplating. Thanks for "reading" me out! Again, I know this seems like it shouldn't take over so much of my emotions and thoughts right now, but this is a very, very difficult decision that pretty much affects Brycen's life for years and his ability to communicate. I just wish some there was some magical "sign" to tell me what is right for Brycen!

http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
http://www.dynavoxtech.com/products/maestro/features.aspx

Choosing an AAC Device for Brycen

We've had to change our plan with a device for Brycen since I last blogged about it due to the financial aspect of it. With Brycen's services, there is a hierarchy of who will pay for what and in what order. It is billed through our private insurance first, then put through to Medicaid, and then if Medicaid is at it's limit of paying for something, our Waiver services can help out if we have the money available in Brycen's name. It's very confusing so I'm not really going to do into detail on the specifics, but the summary of all of it is the device that we think is best for him right now will hopefully be too low-tech for him in a couple years and Medicaid puts limits on how often they will help pay for a device. We are still unsure if and how much our private ins. will pay because of the run-around I have gotten from them in the 3 calls I have made to them. So, despite my reservations about getting a higher-tech device for Brycen right now as I know how easily frustrated he is, as well as the short attention span he has, we really have no choice at this point. These devices can easily be thousands of dollars...so obviously far out of our personal financial reach so we have to rely on insurance to do what they can and just adapt to what they will pay for and how often.

Therefore, we are no longer getting the Go-Talk 9 that he is currently using in therapy sessions now and has responded so positively to. We had a meeting yesterday with a rep from Talk To Me Technologies and will have another meeting on Monday with a rep from the Dynavox company. They each carry different devices that are very similar, but we want to make sure we are considering all of our options since this obviously is not a simple decision. While I am absolutely ecstatic about taking this next step in helping Brycen with his communication skills, it is also frightening and stressful as I worry about making the wrong decision and I worry also about building too much hope into the device. Don't get me wrong...I know the research supports how much these devices can help in so many areas of the child's life, but being that there is no one right device or one right answer on how to help kids with ASD, I feel like I am reaching for something with a very fragile mindset.

Anyway, I wanted to share a link to the actual device we introduced Brycen to at the meeting yesterday.
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
I loved it! My experience with devices has been with the basic low tech Go-Talks as well as the older style, big computer like devices over the years. It is amazing what they have recently came out with that you can really tailor to the child's specific needs and day-to-day things. The devices we are currently looking for need to last him at least 5 years, so we want it to be able to grow with him from pictures, to words, and be something he can use to do homework with. So if he is still having issues with verbal skills in a few years, we can sit at the table with him with the device, ask him a homework question, and he can spell out his answer!

Now, I'm sure you are all waiting for me to tell you how Brycen responded to it...and I'm sure the suspense is killing you because it really killed me for the last couple weeks since we set this appt up! It was so unbelieveable that I had to call Mike at work right after the appt, which I NEVER do! I usually just wait to fill him in on updates from Brycen's appts and school stuff when he comes home, but this was far too amazing to not share right away.

Brycen LOVED it! He actually came over and just grabbed it out of her hand when she was showing me things. He set it down on the table, and pushed a couple buttons to see what it would say. This is the same reaction to the Go-Talk that he had...like he needed to just feel it out first and see what it does by pushing all of the buttons. What I think really surprised him is when he would push a category button, a bunch more pictures magically appeared and he looked up with a smile like "this is pretty cool." Without any prompts or pointing to show him, he pushed on the "toys" button on his own, found a picture of a "ball" on the next screen, pushed it and heard "I want to play ball." He then smiled and went over to the ball to play with the SLP. He came back over a little while later while we were talking, grabbed the device again, found the toy button on his own again, and then pushed the "swing" button and the device said "I want to swing." So then he went over to the swing and did that for a little bit! Not only did he seem to be curious about the device, he figured out those steps without us even showing him just by looking at the pictures and trying it out! He also followed through with the choice he made which is something we have been working on with him.

Now the big news is we decided to try out the "I'm hungry" button and we programmed in two different snacks we had available for him to choose from. He did the same thing as before just by us pointing to the "i'm hungry" button first. After a few minutes of snack, he went back to the mainscreen on his own, found the toys again and communicated through the buttons that he wanted to swing again. Then after swinging, he came back, found the "I'm hungry" on his own and went to the snacks again.

I know this probably doesn't give you the best picture of how it all played out...but take it from me, that I was absolutely amazed at how interested he was in the machine and how he pretty much taught himself those two things! I, of course, had tears in my eyes! If we can accomplish all of that in one hour, imagine what the possibilities are once he has a machine to use every single day!

Brycen's Path to Communication

"Our patience will achieve more than our force." Edmond Burke

When Brycen turned 2 years old, he had about 40 single words and several 2 word phrases. He knew multiple signs and could communicate to us what he wanted by pointing or leading us to it if he didn't already have the words.

By the time Brycen turned 2 1/2 years old, he only had one word left "ball." Ironically, this was the first word he ever said when he was about 12 months old. Despite starting speech therapy a couple months before, he continued to lose. We didn't get it...how can a child all of a sudden lose all of these skills? Of course, there were more signs and symptoms that popped up over those months too.

Just before he turned 3 years old, he was diagnosed with Autistic Disorder, specifically regressive from a clinic. A month after he turned 3, he received his "official" diagnosis from the team at U of I Psychiatry Department. Along with Autistic Disorder, he was given a dx of mental retardation due to his cognitive skills being so low when tested.

Fast forward to almost 4 1/2 years old...after 1 1/2 years of special education preschool, 7 months of speech therapy outside of the school...and he really, really struggles in communication. To date, he has quite a few sounds and word approximations, has been retaught a few signs, but all of this typically needs to be prompted by us. Rarely, do we hear an approximation coming from his mouth on his own.

About a month ago, the SLP at the clinic here decided to focus more on a communication device during therapy appts. We were amazed at how fast he caught on! It was like he was just waiting for this device. The SLP warned us that sometimes it seems like a child with autism will "forget" their current signs and word approximations if too much focus is put on the device. So she wants to make sure to keep using all of it during appts and outside of therapy to ensure nothing is "lost" again.

3 times over the last week or so, the SLP has been so excited to share with me how much she thinks the Go-Talk is actually increasing his verbalization. She says she notices more sounds coming out, more trying, and more imitation when asked. His teacher has also written more notes over the last few weeks saying they are noticing more sounds/imitations also, as well as we have noticed it too. This itself was absolutely exciting and has paved the way to getting his own communication device soon!

The most recent excitement came yesterday though! If I wrote it all out in sentences, this post would probably double in length because of how much we heard from him...so I'll shorten it a little. For those faithful blog readers, they will definitely be able to understand how much progress this is from my past posts about his communication (or lack thereof).

• He said a word approximation for "grandpa" twice-once outside with grandpa and grandma, and then later in the evening when we were talking about grandma and grandpa going back to their house. NO PROMPTS!
• When G'ma & G'pa were leaving, Grandma mentioned getting a hug from him and he said "hu" with NO PROMPTS! This is actually one we have NEVER heard before!
• When they were walking out the door, they said "bye" to him like always. Uusally, we have to specifically ask him to look at them and tell him to say "bye," but he immediately responded saying "bye" to both of them, also looking at each of them with NO PROMPTS!
• During bathtime, he held the toy turtle up to me and pointed to it, making his sound that means to tell him what it is. When I said "turtle", he immediately verbalized "tl" with NO PROMPTS. This also has never been heard before.
• I asked him if the water was getting cold, and he responded by putting his hands on his arms and pretending to shiver (which he does off and on before this) and then also said "co" with NO PROMPTS!
• While tucking him into bed, I told him "night-night" like always, and he responded by saying "n-n" with NO PROMPTS!

So far today, I have heard word approximation for "OK" when I asked him to get down from the back of the couch (his most recent place he thinks he needs to sit), as well as saying "cu" which means "thank you" with NO PROMPTS when I gave him a cookie for snack. His sister did say it first, so it probably helped remind him to use his manners, but he needed no direct prompts from me!

This is amazing progress for him and I really do think our patience is paying off! Just like the quote above says, patience will definitely achieve more than forcing him to try. These are a couple days where something "clicked" in his head to help these things happen. We've had days like this in the past, but not with this many words/sounds in a short amount of time...and he always seems to "lose" what he briefly showed us that day. It seems like he hasn't lost the will to try though today and I can't wait to hear what else he says today!!

15 minutes after finishing this post: Well, the above video proves he's on a roll again today! I can tell he was really concentrating and though it takes him awhile to respond to a prompt from me, it came out so clear!!!

Go-Talk

Brycen is doing great with the Go Talk communication device during speech therapy so the SLP agrees it's time to go ahead and order him one for at home!
For those that don't know much about communication devices, they can range from around a hundred dollars all the way up to over $10,000. It really just depends on the developmental level of the child/adult that needs one and the purpose of it. In Brycen's situation, we have discussed how easily distracted he is and how he gets frustrated very fast. Our goal with a device is to get him to make choices, communicate these choices, and to hopefully encourage single word (possibly stringing 2 words) verbalization. Therefore after reviewing many different products, the SLP and I agreed that the Go Talk 9 seems to be a good fit. I have attached a link below that will explain what it is and shows a picture of it.
The Go Talk is a low tech device that is usually considered a starter device and is very common with children around Brycen's age and level. My concern with anything simpler would be he would outgrow it too fast and we would be requesting for Medicaid to pay for another one in a year or so. My concern with anything more high-tech is that he gets too distracted with too many things in front of him.
When we first tried the Go Talk 9 at therapy, the only pages they had were 9 pictures to choose from. The first time they tried to work with him on it, he didn't want anything to do with it more than likely because it was just too much for him to grasp. The second week of therapy, they covered up a couple pictures so there was less to overwhelm him, and he did do better with that, but he thought it was just a game and wanted to push every button over and over and then would giggle. It had to be taken away from him at that point because we do not want him thinking this is a toy to play around with. He needs to learn the purpose of this device and only be allowed to use it for that purpose...it's the same way with all the other consistency we have in his life to ensure we are setting him up for success.
Once we actually get the device, we will only use 3 of the picture boxes and 2 of the smaller boxes but we know eventually we will need to give him more options so that is why we went with the 9 level over the smaller ones. This device will easily fit into the diaper bag when we leave the house and will be easy for him to turn on and off, as well as easy to reprogram as needed.
Our goal is for each page to have 3 options of activities, food choices, or maybe a 3 step schedule. The other two smaller boxes will have the pictures for "more" and "all done," to encourage him to string together two pictures. The SLP said he was able to string together the "more" and an activity picture multiple times on his own at the session on Monday after only showing him a few times! I'm excited to see what will happen once we are consistently using the device and what the progress will be!
http://www.attainmentcompany.com/product.php?productid=16147&cat=337&page=1