Saturday, June 18, 2011

Apraxia. Maybe.

Friday was a slightly nerve wracking day. After spending every morning that week working in the Community Corner doing some awesome community building stuff with the kids, I took that Friday off. I dropped Joseph and Camille at church in the pouring rain and took the littles home.

I should say that we read stories and did fun stuff. The truth? I was such a nervous wreck about Georgie's appointment that afternoon that I made the babies popcorn, let them watch TV and surfed the net.

(Okay,  yeah, we did cool stuff like read books and play with blocks but it felt like all we did was watch TV as the morning draaaaggged.)

I had to wash his super cute green polos and plaid shorts that he spilled his drink on because, for some reason, he HAD to wear that outfit. HAD to. I had my heart set on him looking adorable, put together and slick.I didn't want the drs to look at a grubby kid, see my mommy gut, bushy eyebrows and read that he's one of four... and think that his problems are caused by too many siblings and a mom who can't manage.

Why yes, yes I was being stupid.

I picked the older two up early from the last day of VBS and felt horribly guilty that I was taking them away from hot dogs and ice cream and a fun movie (and, it turns out, a firetruck spraying water everywhere) because their brother had an medical appointment for his special needs. You know, that are all my fault since he was born early because my body failed him, blah blah blah.

Guilt, guilt, guilt.

After dropping them off with a friend (who spoiled them rotten by taking them to a spray park and baking them cookies) I headed towards the hospital. I was a little early and wanted an iced tea but the line at McDonald's was too long. I finally just arrived early and parked in the shade, ran the AC and read while the boys napped.

My stomach was in knots and I was horribly nervous. I don't know why but I was. I was terrified they were going to find something wrong or, worse, tell me I was overreacting.

Nothing like that happened.

The people in the waiting room were super friendly and we chatted about toddler-stuff, like movies, for awhile before they called us back for our audiology test. Georgie was properly shy. I finally got Cole settled with a snack, and Georgie on my lap in the sound proof booth. (Can I get one of those?!) When the test started, he got into it! When he looked at the speaker a sound was coming out of, the audiologist would make a little toy act up and beat a drum. He loved it but loved the toy dog they used to get him to look "center" more. When the test was done, he wanted the dog to play more!

He passed with flying colors, by the way. No problems hearing!

The speech and language evaluation was a little more sticky.

When we were called back, the SLP gently questioned why we were there, if he was already being seen by Infant and Toddler Services. I told them the truth- we wanted a more in depth evaluation, a second opinion and more in site and ideas as to what was going on in his head.

After questioning us and listening to Georgie talk (not that he did much of that), she told us:

*his receptive language is 29 months, right on target for his age
*his expressive language is 15 months, which is very delayed
*she is pleased with his social interaction with his little brother
*she will not diagnose, but thinks he has a motor planning disorder. Basically, his brain knows and understands words and what he wants to say. His brain cannot coordinate what is going on in his mind and get it out of his mouth. He is a bit young to dx Childhood Apraxia of Speech (also Google Verbal or Acquired Apraxia) but she think he would benefit from apraxia therapy, which is a bit different from traditional speech therapy.

I completely agree with her. This fits with my research and our (long, extensive and filled with reading, speaking and writing disorders) family history. The good news is we know what direction we need to take and we have a better understanding of how to treat it. The bad news is that apraxia is neurologically based; that is, it is brain based. There is a glitch between his brain and the muscles in his mouth. While there is nothing physically wrong with the muscles, the impulse that would tell his muscles to form to make sounds is, well, out to lunch. This explains why we hear train or "it bieeeg" or other words like that once and then not again. He gets so excited or upset that he has spontaneous speech and words come out. When he has to sit down and THINK about words, it's too hard.

In short, Georgie can understand everything you say but he can NOT physically talk. Nothing we can do will MAKE him talk, he has to LEARN to talk.

Now, she did say that while he would benefit from apraxia therapy, he could very well be one of those kids who makes rapid progress to the point where they wonder if he really did have CAS. I pointed out that we would never know if he suddenly "caught on," if he is just a kid who needed a certain type of therapy, if the therapy worked or if he was just never wanting to talk to begin with. (I KNOW the latter is not the case.) I am not comfortable with waiting on additional therapy and she agreed. We are to keep on truckin' with our IT therapist and work towards preschool in the fall.

Our goals are for Georgie to work toward verbal speaking but to have some kind of adaptive equipment to help non-family members understand him.

Oh, yeah, and being the super awesome kid I know he is!


  1. HI! Okay well I really just stumbled across your blog today via a friend of a friend's blog. I know I am a bit of a blog stalker! I couldn't help but comment here because it isn't often that I see Apraxia in the title of a blog post. This is a subject near and dear to my heart as my youngest of 4, who is 4 now, has Apraxia. My concerns arose at the age of 2 when he was almost completely nonverbal. At 2.5 after he had received 6 mos of speech and devlopment services from our county Area Education Services, I too needed more, so I took him to the Children's hospital and had him evalutated. Much like your son, his receptive language was above his age, however his speech was at a 15 mos level. We then got a prescription for a private therapist and he has been seeing her 2x a week for 2 years now and goes to a special ed preschool 4 days a week and gets speech there as well. In the last 9 mos we have had a language explosion (well for me it is) He puts sentences together, although sentence structure is not correct, and some words still aren't pronounce correctly, he has made HUGE progress. A year ago we bought him a assistive speech device called an ALT-CHAT. He had used sign language previous but only he and I knew most of the signs. In all honesty he never really used the ALT-CHAT. He really was driven to use his verbal skills and that is what he prefers to this day. At age 4.5 currently his language skills are somewhere close to a 3 year old. It is a day to day journey and once he masters one skill (say ending sounds) we move to the next. His greatest stuggle these days is hard consonents in the middle of a word. Every day is a stuggle, but is a beautiful miracle in the same right. I very much struggled with the diagnosis in the beggining but now have learned to accept Carter for the amazing miracle he is. Okay this has gotten really long, but I am just so passionate about this and just felt compelled to comment. Please feel free to read my blog if you would like to read our story!! Good luck on your journey!

  2. Thank you so much for your comment! It helps to know there are other families like ours out there. We even have the same number of kids!

    I am a big talker and verbal so I often take for granted the miracle of talking. Helping Georgie find his voice reminds me every day that the shrieking, chattering and even yelling is a miracle in it's own right and not to be taken for granted.

  3. It must feel good to get closer to an answer! Thinking of you and Georgie!

  4. We suspected apraxia for Sweets too. I've heard "motor planning" from both her speech and physical therapists, so it seemed like it might be the right fit. We had two evals last month for her, one from the ITP, and one private at the children's hospital. The state eval basically said they couldn't rule apraxia in or out - that she has some sypmtoms consistent, but others not. The private eval said they do not think she has apraxia though.

    The types of therapies they suggested were totally different from each other too, which is frustrating. Sweets can sign pretty well, and the hospital eval said to keep going with the signs. The state eval recommended communication boards (which they provided to us for free through ITP) and they also gave her a communication device with push buttons. The hospital eval thinks all that is unnecessary since she can sign, and would only use those things for a kid who can't/won't/doesn't sign. So we don't know what to do, we are just using everything now.

    I happen to know two other local kids a few months older than Sweets who have been suspected of having apraxia in the past 6 months, and both have improved significantly - from saying only a few single words at 24 months, to saying 5+ word sentences 6-8 months later. I hope it will be the same for yours and mine!