Device Decisions

We had a very productive and overwhelming meeting with the device people on Tuesday afternoon. Present at the meeting were the following:

• Brady's Teacher
• 2 Classroom aids
• School Occupational Therapist
• School Speech Therapist
• Home Speech Therapist
• District Speech Therapist (specializing in devices)
• Southwest Human Development Speech Therapist (the state's contractor for device evaluations)
• Southwest Human Development Occupational Therapist

Do you think we have enough support? They brought several different devices to demo and they wanted to observe Brady using the different models to determine which was most appropriate for his needs and abilities. Brady was fairly cooperative and wow'd them with his love of buttons. At one point, one of the reps was covering a few buttons at the top of the device and Brady was trying to shove her hands out of the way. He wanted sole control! The great thing is that we know he will want to use one. The challenging thing will be getting him to use the device for communication and not as a toy.

It's not yet official but Brady will likely be approved for the Prentke Romich Vantage Lite.

This is a huge, huge deal! It is known as one of the most cutting edge and complex devices on the market. Brady will be able to use the same device all the way through high school as it facilitates reading and writing. For now we can program it to be more simple. The reason approval for this device is so huge is that, in most states or school districts, it's extremely difficult to get approval for something so complex and expensive. We also have to have support at the school level because somebody has to train everyone at school how to use it. Luckily our district supports this particular device and Brady's home speech therapist has experience with it as well. Did I mention Brady's new device will cost more than my car is worth? We are very fortunate that we don't have to fund this ourselves as many other parents do in order to get the best device for their child.

It's going to be a lot of work learning the software and how to program and back up everything on a regular basis. Even more work will be encouraging Brady to use the device in an appropriate manner. I'm going to find ways to cut back at work because I want to put everything we've got into this. I want to give this boy every opportunity to finally have a voice.

Self-Taught

No thanks to his parents, SOMEONE has learned some of his ABC's. I give full credit to the VTECH Write & Learn Letter Pad...

and the Leapfrog Fridge Words Magnetic Word Builder.
The first we keep in the car and Brady pushes the buttons over and over... and over. Just for fun, so we thought. The second is on our fridge and Brady prefers to hit the middle button juuust right so it malfunctions and makes a horrible static sound.


A few nights back Troy and I were discussing how Brady obsessively pushes the same buttons over and over. His stimming has escalated lately and we figured the button pushing was no exception. On a whim I asked Brady to touch certain letters. He did so with 90% accuracy. We have tested him a few more times and, while he doesn't know all of the letters, there are several that he always gets right. I didn't know whether to cry with joy or with sorrow for the extent by which I may have underestimated him.


It's incredibly difficult to understand this boy's capabilities because he is almost 4 years old yet he doesn't speak. Not a word. He used to say "yeah" but he lost his one and only word. I don't know where it went or how to find it. He can say "sssss" when (and only when) he is on the swing. Occasionally he will babble and we may hear a "g" sound or "v" sound. He has lost (or refuses to use) most of his sign language. It's hard to tell if he is willing and unable or able and unwilling to improve his expressive communication.


We have a hugely important meeting tomorrow at the school. Brady's teacher, aids, speech therapists (he has more than one) and a speech device representative will all be there. I am praying that an augmentative communication device will be the answer. I have seen some demos online and they use the same PECS pictures Brady has learned to use and a computer will generate a voice as he chooses a picture. Somehow technology has allowed for sweet-sounding children's voices and not strange, robotic computer sounds. I hope, hope, hope this is the answer for Brady. I would love to hear what's on his mind.

Thankful

300

Brady has been seizure free for 300 days! It was exactly one year ago that he was released from the Epilepsy Monitoring Unit and what a difference a year makes. Brady has had only one seizure since starting the new medication and thankfully he gulps down his Keppra twice a day with no complaints.

It's hard to explain the shift in our quality of life over the past year. Brady used to have what we called his good days about once a week. He was happy and content the whole day and we would take him to the park, the store or a restaurant without much worry. The rest of the time he would seem to be in some sort of distress. He was irritable and tired and seemed sensitive to loud noises. We babied him on those days and prayed he wouldn't seize. I think he must have had horrible headaches a lot of the time.

Today he pops out of bed every morning with a huge grin and goes about the business of being a 3-year old boy. He is obsessed with vehicles - the bigger or louder the better. He loves wrestling, TV and stroller rides to the park, In N Out, or Barnes & Noble. He loves going to school and playing with Jessica in the afternoons. He adores other kids and doggies he sees in the neighborhood.

(giving Mom directions to the park)

Brady is thriving physically and is a pro at walking now. There is less and less carrying and more hand holding. So much has happened that I thought might never be possible. With all of the strides Brady has made there are certainly new issues that have popped up. We now need to turn our attention to his behavior and the fact that he has regressed over the past year with respect to speech and sign language. But I am thankful that we are able to focus on other areas proactively rather than just surviving each day.

Look at this kid. Not a care in the world - just as it should be.