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.

Update

Nea is 9 and half. She’s a June birthday, so she’s one of the youngest in her 4^th 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.

Ugly ornament party - updates

As previously discussed, we like to throw the occasional ugly ornament party. We called the party “annual” for a long time, but at some point we realized that we were horrible filthy liars. It’s not annual if you skip years with a frightening degree of regularly. Anyway. Had one in 2011. Had one again this past month.

The 2011 winner was entitled “With the Teeth” and was presented into competition by the fabulous, marvelous Josh and Jean-Marie. It’s awful, and completely deserved to win.

As usual, whatever it was that I entered was a boring type of bad. Sigh. It’s hard finding good contenders. I keep an eye out at garage sales and rummage sales all year, but there’s so much that’s just a middling amount of ugly.

 

It was Santabird, back in the day, that forced us to make two categories. Who can compete with a twisted mind like that? But again, coming up with creative ugly is harder than it appears. Trust me, I've tried.

Sandi brought "Scary Poppins" to our house, and won the homemade/altered prize. She bought it at a craft fair. You probably can’t tell from this photo, but it’s mostly made out of beads and safety pins. She is holding an umbrella. Again, please note that a good title can take your ornament to the next level of awful.

And in the store-bought category this year, our first two-peat! Josh and Jean-Marie returned with "Little Red," the runaway winner. Bought at the same antique store as their last winner. They haven’t said where this store is, but I’m going to have to see if I can figure it out.

Because that place is clearly a goldmine of hideousness.

Beware of nutritional supplements promising miracles

Oh, gosh, what a shock: 

A dietary supplement aimed at children with speech delays is being deceptively marketed by NourishLife, LLC, and may be hazardous to children’s health, according to findings by truthinadvertising.org (TINA). TINA, a nonprofit based in Madison, CT, has alerted the company and is filing complaints with federal and state regulators.

They left a comment on my blog once. I deleted it, and posted this: 

Just don’t shill your shit on my site, asshole. I've got enough medical related expenses right now without someone preying on a parent’s hopes and dreams with false promises and testimonials. Fuck right off.

A reminder that the FTC says:

Dietary supplements may seem like harmless health boosters. But while some have proven benefits, many don't. Unlike drugs, dietary supplements aren't evaluated or reviewed by FDA for safety and effectiveness, and even "natural" supplements can be risky depending on the medicines you take or the medical conditions you have. In recent years, hundreds of supplements also have been found to be tainted with drugs and other chemicals. Always talk to your doctor before you take a new supplement, and avoid any supplement claiming it's a "cure."

Eat healthy unprocessed foods as much as possible, and save your money.  

Edited to add: this press release went out in March, but I just heard about it now. Spread the word!

Beautification

One day a long long time ago, I think it was in May, I went to a garage sale with the kids. I gave this bench a look, but from afar it looked like the price tag said $300, which was believable. A nice bench like that.  But as I squinted more carefully, I realized that this oak veneer bench with hideous stained fabric was really marked $30. No way, I thought very very quietly to myself. What a deal. I sprang into action, declared it sold, and made the kids sit on it for safekeeping. You know how crazy people can get at garage sales. I wanted to take no chances.

Isn't this great? I said to the kids. No, they said. They hated it. I proudly brought it home and showed it to N. He was not impressed. No vision, this family of mine. So I ignored them and went to the fabric store, clutching a coupon. And now, wah laa, it is finished. Got some nice baskets from Target to store our shoes underneath. Makes the back door all fancy-like. 

View from a blog

Gosh, it's been an age. Hello!

We had a fire in the chiminea the other night. I sat there quite awhile, as you can see. 

Trash picked items: hurricane lamp, sundial, candlesticks, and the lovely fern in the back.

Adventures in travel

View from the breakfast table, near San Gimignano

We recently returned from a long trip visiting family in Switzerland and hanging out like Eurotrash in Tuscany. There’s too much to tell, but I’ll try to hit a few highlights.

Turns out renting a GPS from Hertz at the Zürich airport costs a completely ridiculous 30 euros a day. In retrospect, that would have been cheaper than the divorce that would have been imminent had we traveled with only a map. Thankfully, my cousin ripped his GPS off his dashboard and handed it over just as he was dropping us off at the train station the evening before we left.

We named her Inge. It was a love-hate relationship from the start. Her best lines included, “Sie befinden sich in einer Sackgasse,” (You are in a dead end.) while we barreled happily down the Autobahn. Also, she regularly chirped “Achtung! Gefahrstelle!” (Careful! Dangerous area!) for no discernible reason. And you haven't lived until you hear Inge say, “Poggibonsi,” which is a small Italian town.

Lastly, here's some very old artwork (1500s? Maybe earlier.) we saw at Florence's Duomo.

Apparently this Disney shit is much older than I thought.

Triathlon, revisited

So, unlike last time, two years ago, I very much do want to do a triathlon again, and here it is, only days after finishing this year’s. I managed to finish in a slightly better time than my last attempt, too, which was my goal. Hurrah!

While I was standing around in my swimsuit and swimcap, waiting for my wave to start, I made a little small talk with the people around me. Then one of them looks at me more closely and calls me by my most-commonly-incorrect-version-of-my-name. “Yes?” I say, because, well, close enough. She points to herself and says, “Kathy F---“! A name that sounded vaguely familiar from high school. That woman is seriously gifted. Recognized me after 25 years, in a swimcap. I looked her up in the yearbook when I got home. Yep. That was her. How do people *do* that?

Anyway, the water temperature was only 70, which worried me. A lot of women chose to wear wetsuits, but I decided I didn’t want to deal with all that. When I first started swimming, I took stock of why I was gasping and flailing about. Turns out I wasn’t panicking. I was freezing. Did a lot of backstroke. Tried to avoid hitting people. Felt pretty good when it was over.

Got on my bike and averaged 17.6 mph, despite the wind. Whee!

Parked the bike (after going down the wrong bike rack lane, gah! Transitions are tricky.) and started the run. At no point did the run really feel great. I chose to carry my water bottle, and I’m glad I did. I can’t drink out of those little cups, and I was really dehydrated. I am a little bummed that my time didn’t reflect all the running I did going into the race. I did 4 miles in 40 minutes on the bike path recently! But oh well.

I do love looking at the results in detail. The third and fourth place overall finishers were 16 and 14 years old, which is amazing. There was also a 77 year old who finished in 2:05! WOW! And a 72 year old beat me by 12 minutes. Inspiring.

In related news, I found out today that I raised over $1000 for the school garden. Fundraising is uncomfortable, but I assume most people I know give to charity, so it’s just a matter of asking at the right time. People feel good when they give, and I’m helping that along. Thanks to all of you who threw in some bucks!

Plus doing the fundraising gave me an excuse to call one of my college friends who I don’t talk to often enough. I love friends that still make you laugh even when you don't talk very often. Konrad, you are a gem. I bet I’d even recognize you in a swimcap. A really flowery old-lady one.