I'm in print! Well...digital print.

Check out the latest edition of Parenting Special Needs, a wonderful free on-line magazine! It includes a piece I wrote called, "Apraxia; when the words just won't come".

I wrote a blog post about the magazine some time back and have stayed in touch with how the magazine is doing. Apparently subscribers are up and the message is building.

So head on over and give them some love, and take a minute if you can to read my piece.

Thanks!

Happy "F"day!

No, I am not being profane! I might mean happy Friday as well, all of us I am sure, have had a hell of a long week.

But, what I really mean is "F" day. You know, like the letter.

It looks like Shea may have finally mastered the "F" sound today with Bubble. "F" is one of the classic tough letter sounds that take a lot of lip and mouth control. Shea would just skip the whole sound and put something easier in it's place.

Like:

Sunny for Funny
Serry boat for Ferry boat
Sog for Frog

You get the idea.

Interestingly, he didn't seem to have a problem with putting the "F" sound on the end of a word.

Off, Cough, Yaff (laugh), you already know about that pesky "L".

But, today Shea was full of F's: funny, found, ferry boat. They seemed to come easily, without him stuggling. In fact, he didn't even seem to think twice about it.

Our work this week is to keep them coming. Don't let him slip back to old easier pre-F days.

When it was time to go, Shea said, "I no want to go." When pressed he said, "Stay with Bubble. I miss Bubble."

Bubble said, "Shea, you will always, always be my very special friend." He then went over and gave her a big long hug that melted good old Bubble to blurry tears.

She said, "Shea you have made my day."

Thanks Bubble, you have made our day too. A very Fine Friday to us all.

We have come a long way, baby!

Two years ago when Shea was just about to turn 3 we were trying to get him to blow a cotton ball across the table. Just getting his mouth to work and blowing with enough force was an exercise that we worked on for quite a while. It seems like an age ago.

Referred from a friend, we were also just beginning private speech therapy with Bubble lady. He wasn't speaking at all. He was coming along well with signing, the whole family was and most of my excitement and enthusiasm at that time was over those strides.

Bubble took the signing as a good indication but never really pursued it with her therapy. She was going to teach Shea to talk and at first it was painful to watch. Sometimes it still is.

I remember a day where Shea was pushing cars on her window sill. Bubble gently took them away. Shea maybe grunted his annoyance but just stood there watching and waiting for what came next.

"1...2...3...Go!" She said and she pushed the car to him. "1...2...3...Go!" She said and he pushed it back.

Again, "1...2...3............................?" Waiting for Shea to say go was one the longest, most anguishing waits of my entire life. I literally screamed "GO!!!" in my head, again and again. Internally, I pleaded for him to just do it. I physically squirmed, it was so uncomfortable to watch. Bubble kept her cool. He knew what she wanted him to do. All he had to do was try.

I am not sure how long she coaxed and prompted him with the "1...2...3...?", multiple minutes perhaps which seemed like days, but he eventually said something that was a close enough approximation to "Go" that they could move on. They did those over and over again.

Bubble cheered and congratulated Shea on this big hurdle but I was a wreck. It was a very hard thing to watch. Like watching paint dry while having your heart rolled in ground glass.

There are a lot of little stories like that but my point for this post is how far he has come. Time is an amazing thing especially for the little guys. So much can happen in a year or two.

As we near Shea's 5th birthday, I am hopeful. He has come so far. I still don't know what it all means but we are still moving forward.

As I type, Shea has just come down from his bedroom ready for snuggies and interested in what I am doing on the computer.

So, I point out to him a simple, familiar childhood mini-sentence and he reads out loud to me, "1...2...3...Go!"

Yes, baby, you have come a long way.

Comparisons...never a good idea

Don't compare. That should be a hard and fast rule. You would think I would know that by now.

When I was in high school, I had a poster of Albert Einstein on my wall with this quote, "Do not compare yourself with others, for you will always find someone better and worse than yourself." Or something close to that.

At the time, it made a big impact on me and helped me through some tough years. I never forgot it.

But, then the kids came along and it is really hard not to compare to other kids their age. With Shea, that was really painful so, understandably I stopped comparing typically developing kids.

But when I read a really good blog post about another kid with Apraxia the other day, I slipped right into comparing my speech delay kid with hers.

I know, I should know better by now.

One side of me celebrated with the mother for the great strides that her son was making. He was only 3 and he was doing great; sentences, content, vocabulary. No doubt Speech Therapy 3 days a week was key. But, how could they afford that?

See? Don't compare. It will always make you either feel like shit or smug. And, neither is a very good way to feel.

So, I guess, honestly, it made me feel like a loser and afraid for Shea all over again. That I am not advocating hard enough. That I am not doing everything that I can possibly do. That I should be somehow making the state pay for more than they already are. It makes me feel like I am lazy and don't sit down and focus on drills and modeling as much as I should.

That I just treat him like a "normal" kid too much. Is that possible? Is that terrible? Sometimes I don't even know anymore.

Speech update: working on sentences

"Bad guy in car." Shea said the other day pointing to one of his match box cars. Apparently, the bad guy was in the red car and the good guy was in the blue. I doubt if this was a political statement but I thought it quaint considering the timing.

For people without speech difficulties it is really hard to relate to how very hard it is. For example, me; I have always been a talker. Molly as well, she piped up with full sentences at 2. But, for Shea every word is work and a sentence, no matter how cryptic, is a very big deal.

Bubble lady, our beloved speech therapist, works on specifics every week like: plurals (cars) or possessives (Shea's car) and gives us direction and things to work on at home. Right now we are coaxing the "w" sound. Shea will say "yun" for one or "yait" for wait. I mouth the "w" sound and sign the letter by my mouth and usually he will try it again and get it. It's laborious but each time it gets a little easier for him. BTW - Learning to sign the alphabet does come in handy.

We are also working on the "f" sound, apparently a very hard one. Funny is "sunny" and fish is not even close. We've gotten pretty good at translating. As a family, we can pretty much figure out what he is trying to say.

On his own, he has started to say the "z" sound as in cozy or Maisy. And, the other day he tried out "la, la, la" as in singing. Now, that's new.

But, despite the challenges Shea's sentences are coming. 2, 3 and 4 word sentences are happening more and more these days. The biggest difference seems to be that he isn't as reluctant to try now. And, I swear, a lot of that reluctance diminished when we changed to the wheat/gluten/egg free diet. He was so much more focused and willing to try new words.

I read a touching blog the other day. A mom was saying that she was hoping/praying that her child would just open up and spontaneously speak one day. For her sake, I hope it happens. But, I remember feeling the same way. For the longest time I had dreams that Shea would look at me and the words would just spill out. Easily, like the way it was with my daughter. I would be elated and then I would wake up and realize that it was all wishful thinking.

I asked Bubble lady early on if it was like a switch flipping on and that he would just "get it". Unfortunately no but she gave me a good analogy. "Remember learning to drive a clutch. At first it was extremely awkward, it felt very weird, very hard work getting the sequence right but after practicing it got easier and easier, the more you did it the better you got." That is what Shea's speech delay is like. Each time he tries, it paves the way for future successes.

I like to think of it as walking trails in a deep forest. At first they are hardly visible and you need to hack your way through the brush. It's hard work and sometimes painful. But, each time they are traveled they become more pronounced, easier to see and negotiate. With time and traffic the trails become roads.

Only Shea will be able to tell us where his road will finally lead him. That is what I dream about these days.

Searching for diagnosis, Part 1

When Shea was about 2 1/2, his teacher at the Developmental Preschool gently suggested that we get a Neurological screening from the UW. Apparently, they have a pretty extensive facility just focusing on Human Development and Disability called the CHDD.

We didn't know much about it at first and were only given a phone number by the teacher. I left a message, waited, left another message and waited. Nothing. I waited a couple of months and tried again. Nothing. All in all, and I am not exaggerating, I had to have left more than 15 or 20 messages. Each one getting a little more concerned, frustrated and exasperated.

Maybe I have a bad number? That is when I started doing some thorough checking of the CHDD website trying to find an alternative number or some way to access a scheduling person. Nope. I had the right number. And, it did seem to be a real, legitimate facility that has access to all the experts to do a full screen for Shea. As more time passed with no response, I began to wonder; Was there so many kids needing Neurological screenings that they can't get back to us all? Did they not want to see him until he was older? Why weren't they calling me back? Even just to tell me there was a year waiting list and to hang in there?

The irony was sharp. Of all the parents who need some help, compassion and the luxury of not being blown off, it's parents with special needs kids.

I hit the wall; I begged my GP to find someone at Children's Hospital that we could go see. UW was non-responsive and I wasn't going to wait around for those jack-asses to pull it together. By the way, they actually did finally call me 18 months after my first call. They had no excuse, gave a minor apology and some lame CYA story about that scheduling person is no longer with us. Whatever. We did go through with the screening and I will cover that in Part 2.

We got appointments with a Speech Pathologist and a Geneticist at Children's Hospital when Shea was about 3 1/2. They sent us to the Cranial Facial clinic which is where they do all the amazing reconstructive surgery for cleft pallet kids. There was some initial concern that Shea's problem was physiological so we started there.

Jake and I together took Shea and spent a good chunk of the day. And, let me say, if there is a more wonderful, super kid friendly hospital in the world, I would genuinely be surprised. They made the experience very easy and not in the lease awful for all of us. I was so grateful to have some more expert eyes on him that I felt like weeping. But, I did keep it together pretty much.

The Geneticist came in and wanted to check for chromosome abnormality, so we would have to get a blood draw and wait 2 weeks for results. I remember the nurse was this huge, gentle giant of a black guy who took blood from Shea so quickly that he didn't really know what hit him.

Our meeting with the Speech Pathologist seemed to confirm the previous Apraxia diagnosis which I describe as a Neurological disconnect in the language center of the brain.

She did not see evidence of Autism which also had been brought up and reaffirmed by Bubble Lady. But, I wanted more. I asked for prognosis, "What happens to these kids? Do they ever speak? Will he have a life? What do you think, honestly."

She said, "Oh yes, the brain re-maps and creates new pathways. The brain learns to compensate for something that is difficult and finds other ways around it. Like when they are in college and they stay up all night studying, they may have difficulty finding certain words or running their thoughts together."

Holy cow! College!? I have been wondering if my kid was going to be mainstreamed in school! Wondering if I would ever hear "I love you" come out of his mouth! Wondering if he will ever be considered somewhat "normal" with friends and activities. And, she had him in college!

I don't know if she knew how happy she made me when she said that. I suppose I kept my cool but it was the stand out piece of info that came from that meeting. And, for a long while I clung to that thought, repeating it to all who knew me or dared to ask. Closing my eyes I began to see my little boy growing up to be a man who gets a little word jumbled when he is tired.

It seemed like a gift.