When your child can’t communicate.

I just got word that we’ll be losing another speech therapist.  I’ve been really struggling with Parker’s lack of progress in communicating, and finding this out just added to my internal angst.

What do you do when your child can’t communicate? It’s time for me to get fierce in my focus on teaching Parker to communicate.

Besides the Pulmonary Hypertension, communication has been the hardest issue of Parker’s to deal with.  When Parker was very little he would chatter away using a very age appropriate babble.  Then we went to signing and Parker began his love affair with Rachel.

Parker signing More

Parker signing ‘more.’

It was hard work, but when he was desperate he would come up  and let me know  he was hungry, wanted to watch a dvd, wanted to go outside, wanted to swing, wanted to read books.

We switched over to using an iPad as a communication device. The idea was Parker would be able to communicate with more than just family members.  As soon as we made the switch Parker gave up using his signs.  Using an iPad as a communication device hasn’t been the answer to Parker being able to proclaim the desires of his heart.  It’s been FANTASTIC for other learning experiences, but not for speech.

Parker using his iPad as an ACC

Parker working with his iPad.

I’m not sure why this is.  It could have been me not providing Parker with the over 100 opportunities a day for him to communicate via the iPad. (Although I provided a lot)  Leaving it out for Parker to just pick up at anytime scared the beejeebers out of me.  One well aimed throw and it would have been goodbye iPad.

Parker wasn’t able to scroll through the folders to get to the words he needed.  It took close to a year for him to use the iPad to communicate a simple ‘yes’ or ‘no.’  I dislike Tap to Talk, and Proloqo2Go was over and above the budget, and I’m not a huge fan of the stick characters they use.

I made the decision to go back to signing.

Parker has perhaps a 50 sign vocabulary.  When he chooses to use it them is.  He loves to bounce on our big exercise ball.  He can sign both bounce and ball.  Instead he’ll just sit there knowing that I know he wants to bounce and refusing to sign.

It takes a lot to motivate this kid.  It’s wearing me down.  I need to find my mojo.   My super fierce one to be precise.

I know Parker has the ability.  I can’t figure out his lack of desire to communicate.  I wonder if part of it comes with being on a feeding schedule and never really feeling hungry.  Could it be due to always having someone doing something with him and he’s content with that?

Parker needs more intensive speech therapy if he is going to be able to communicate.  Speech therapy that includes not just signing but working on forming sounds as well.  I refuse to give up on the idea that this kid of mine will  be able to let me know his needs, his wants…..his loves.

Over the summer his speech therapy time will be even less.  So it really is time for me to get fierce on teaching Parker to communicate.

Private insurance isn’t going to touch anything to help with Parker’s communication.  We were told we could chose outside therapy for Parker’s waiver  to cover.  We chose feeding therapy.  (Parker’s waiver also reimburses our school district for the Home and Hospital speech therapist.)

I hoping there will be some who read this who can share their best online resources for teaching a child how to communicate.  What worked for you to motivate your child?  Was there a certain type of therapy that worked better than another?

If you could, would you remember us in your prayers?  I truly believe in inspiration from Above.  I believe there are answers out there, I’m just going to need some help finding them.

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. This blogger has a little girl with special needs (not Down syndrome, but an as-yet unwise notified chromosome issue) a two years younger than Parker. Maya is a cutie pie that has trouble speaking and uses her iPad as a talker. Maya’s mum Dana bought a special indestructible hard case for the iPad and a program called speak for yourself that seems to work great — and may be worth trying with your son.

    Maya’s mommy blogs at:
    http://niederfamily.blogspot.com/p/our-communicationaac-journey.html?m=0

  2. suzanne says:

    We have had Proloquo for several years and it rarely gets used. My daughter and I prefer voice4you. It is MUCH MUCH cheaper and pretty easy to program. Along with quickvoice (free I believe). I can quickly say something silly Alia did, read a joke, or just something silly she would like to share. Takes less than a minute but she loves it. Then Voice 4 you is a bit more complicated than that but she uses it in her classroom setting to easily access talking with classmates. We have had 11 speech therapists in the last 6 years, more than half didn’t know how to use augmentative speech devices. So I can definitely feel your pain!!

  3. Frank dude says:

    Utilize the UACT team at the district. Most don’t even know about it. We surely didn’t. Then we bite the bullet and sent him to school. Despite trying our hardest to do it on our own, we realized that him being at a school like Dan Peterson and now in our new state, that we would literally blossom. Peers do a wonderful thing for praise junkies.

    • Frank, we don’t keep Parker at home to school because we’d rather……but because of his health. If I could I would happily put Parker in our local small groups classroom. There may come a time when his health could take a public classroom, but right now he’d simply be absent more than he’d be in school which would end up with him receiving less instruction in the long run. Maybe one day his health will allow him to be taught in a classroom setting…….I’m keeping my fingers crossed!

  4. I couldn’t understand while mother could be happy with a special needs infant. I was brought in to take care of my granddaughter Elise at the age of two months. Prognosis: Rare Congenital Heart defect.(artery didnt spinter in the womb. Went through open heart surgery age two days old. Incumbated for two months, needed to be trached (malasia) For two years she was trached. I would motivated to speak, she would coo around trach. FYI one vocal cord is paralized. She came out like me loud. She has had a special needs teacher come two her home since she went home. Once trach removed and stoma closed receiving speech therapy once a week. Here in TN the public schools district has a program to help special needs children catch up. Now that she can roam I take her to intereact with other toddlers and childre at the public library.. Special toddler storytime arts and crafts and puppeteering. She is catching up quickly, I few a lot of the classic toddler songs and we encorborate music into our exercise program to keep her heart strong. I just take one step at a time her being sick all the time, but she alway bounces back.

  5. Lauren says:

    I am a speech-language pathologist with a disability of my own, cerebral palsy. I love working with AAC and kiddos with DS. Because of my own disability I pride myself in being able to help children make speech sounds in unique ways. I am no expert at anything really, just an SLP who happened to find your blog, read your plight, and would like to try to help. We can e-mail if you like.
    Lauren MS, CCC-SLP

    • Sarah says:

      Hi Lauren,
      I’m an SLP student with CP, doing my master’s thesis on my experiences. (Also, leaning towards AAC!) Wondering if we can get in touch somehow, if you happen to see this! Email doesn’t show up automatically)

      my email is scw19881(at) gmail (dot) com – replace with the usual symbols!

      Would love to hear from you!
      Sarah

  6. Tammy – Noah (6-DS) has relatively good muscle tone and according to his SLP, his oral musculature and anatomy is really very good. But he’s 6, and has made very little progress in speech. He too is homeschooled, has limited exposure to peers, but is surrounded by his 6 siblings aged 3 to 18. It’s like he’s got everything he needs to communicate minus the desire. Food is his biggest motivation – first signs and first words had to do with food. So I think you may right about why Parker may be lacking in motivation. Just want you to know, though, that even surrounding Noah with our kids and having food as a motivator, the speech is STILL coming very, very slowly, even for Down syndrome.

    We switched to a new SLP about a month ago who is PROMPT certified. Do you know anything about apraxia? Some of our kids with DS have additional oral-motor dysfunction. They think Noah is dealing with an additional issue of oral-motor dysfunction NOS. It’s a new diagnosis, but the treatment approach is the same as apraxia. He fits all the criteria for apraxia except that his errors are inconsistent.

    What has helped Noah? DIY books that star him and his favorite things in pictures. He learned “me” that way. One side of the two page spread says things like “Who likes icecream?” The opposite page says “Me” and has a picture of Noah on it.

    Also, his speech therapist one day played “boo” with him, and Noah thought it was hilarious, so he added it to his very limited vocabulary.

    iPad – there are some games like Talking Tom that are voice activated cartoon characters. Noah will at least vocalize when that game is on. There are some out there with various features, some more “appropriate” than others.

    If you think some of Parker’s issue could possibly be motor planning in nature, I would definately look into apraxia and oral-motor dysfunction NOS. OMD NOS is a brand new diagnosis, so you won’t find much in the way of programs out there, but apraxia protocols are very beneficial. Kaufmann, PROMPT, and Speech EZ are the ones I have seen and can endorse.

    Blessings,
    Alyson