Saturday, March 8, 2014

Apraxia update and advice for parents of children with apraxia

Someone recently asked me for advice on their newly diagnosed child. Here's sort of a brain dump of thoughts.


Nea is 9 and half. She’s a June birthday, so she’s one of the youngest in her 4th grade class, which is my greatest regret. I should have held her back, but the school was not supportive, and I didn't want to call lawyers in. She’s about a year behind academically, which is much better than a few years ago. She can spell words like “family, students, those, running.” Not bad, considering she still has trouble with TH, J, and R. Also, her short vowels continue to be an issue. Our school SLP (90 minutes a week) and private SLP (60 minutes a week) work together closely.

I asked our private SLP (who is FANTASTIC. Keep looking until you find someone with experience in apraxia.) recently what Nea’s long-term prognosis is. For the first time, her answer was 100% intelligibility! Imagine my joy. She’s not there yet, but we keep working towards it.

One thing that we emphasized very early in her life was, "I don't understand. Can you tell me another way?" This has really paid off. She uses gestures, she tells us context, she puts the word in a sentence.

What I noticed over time was that she wouldn't get easier to understand even as her speech improved, because she was using more complex ideas, abstract concepts, etc. It was helpful that she was used to explaining herself in different ways.

That's maybe the hardest thing about having a kid with a huge speech problem. For years you don't have any view into their inner thoughts. You only get small clues into what's bothering them. And it sucks that everything is such a struggle. Even now she still has to repeat herself a few times every day to us, and we understand her better than anyone else.

We just had her annual IEP, and I needed to put together some speech samples for our private SLP’s report. Here’s what I sent:

A few random thoughts from Nea:
  • How the people take it out anyways? 
  • How many people there are in Africa?
  • Where you teach German school?
 As you can see, there are lingering grammatical issues. I asked her what the perfect summer camp would be and she said:
Play with stuffed animals camp. 6 Flags America camp. Lombard pool camp to play in the water. Everything kids can do camp. There's no adults -- kids make their own decisions. And the last one is ... What are you writing? TV and video game camp.

Happiness is having a child that can say, “There's no adults -- kids make their own decisions.” It was totally understandable, even with articulation errors. What a great sentence.

Nea is in the other room practicing her drums for band. She finally learned to ride her bike at 8 years old. My greatest hope is that someday she enjoys reading. J

Advice for parents of children with apraxia

Having a special needs child intensifies your worry, your frustration with friends and family, your fear. It’s hard on our hearts, our marriages, our social network. Here’s what I wish I had heard 5 years ago:

Forgive yourself. Yes, you could always do 10 more minutes of speech practice, but your main role in your child’s life is PARENT. No one else can fill that role. Nea is a massive cuddlebug. I assume it’s what she needs to help her function in her stressful life.

Think of it this way: if you can make your child happy and make sure he/she continues to work hard in speech and academics, that is your greatest gift to him/her. Nea loves going to school, and she works hard every day, she’s a very happy child, and I consider all of that pretty damn important.

Advocate at school, getting all the services you can for him/her. Educate yourself on what services are available. What are other parents getting for their kids? Never take the school's answer as a final answer. They may say no one receives more than 60 minutes a week of speech therapy. That statement is not legal. They must provide services as deemed necessary for your child's individual needs. Ask for everything in writing. 

If people in your life are not supportive, try to build a new support system with other parents with special needs kids. My Facebook feed is full of CASANA posts. Try to find a local group of supportive parents and meet up once a month.

I know you want a crystal ball. No one knows what the future holds. It’s a very hard path we’re on. Be kind to yourself.