I don't entertain

Not very often. Something about my messy, cluttered, dust bunny house?

But today I had some good friends over and at one point I thought, "this is pretty much perfect"; 2 excellent gal pals, some toothsome tidbits and cool beverages. Later some other neighbors stumbled over. We laughed, we kvetched and repeatedly marveled at Shea.

He talks all of the time. You can't always understand what he is saying but he sure is talking a lot these days. My GGF said, "You should get some audio of Shea. His speech has exploded. It will be hard to remember." She is right. I should.

I just don't see the huge strides over weeks and months, I am way too close. But, it seems everyone this summer is commenting on Shea and his willingness to pipe right up.

We are starting something new. There is a speech therapist who lives on Vashon but she works off island at the Port Orchard School District. She has the summer free and can come to my home on Mondays.

Also, she happens to be getting her Behavioral Therapy certification and would like to help Shea with the potting training this summer - for free. She is planning a long day where we sort of just hover over him the whole day and keep reinforcing the message. She says we may need the next day also.

Now, this I gotta see!

I will faithfully report back!

IEP meeting prep

A date has been set. For those of you who don't know, Shea's birthday is April 20th. He will be 5.

The school is supposed to do the IEP meeting at or before the birthday to be completely compliant. Last year our meeting didn't happen until late May. Which was only one of the several problems with Shea's teacher last year which, of course, I covered extensively with this blog post and this one too.

We are much happier with the teacher this year, thank goodness. But, IEP meeting are still a bitch. After going through this a couple of times, I have determined a fledgling routine.

A month out, like right about now, I talk to all the specialists and ask them if they have any suggestions for the school or specifics to add to the IEP. This has been very helpful in the past. Not only do they bring up really good ideas but they give you the edu-speak terminology on how to ask for it. And, oh yes, it is a different language. And, just like in a foreign country; if you can't speak it, you don't get it.

So, I am beginning to pull all that together now. If I time it right, I allow the specialists a few weeks to ponder it and they always come up with very good suggestions.

My big concern this time around is to Kindergarten or not to Kindergarten next year.

I mean he is only 5. Plenty of typical kids, especially boys, don't start Kindergarten until 6 but I don't want him to be bored. Will another year of cutting and pasting and working on his expressive language be dull? In my heart, I don't think so. Why push him ahead when he is clearly not ready. Socially or fine motor either.

I know I am not supposed to do this but when Molly was 5 she was so precociously quick that I knew she was ready. Shea has never been that way. He isn't even writing letters. He knows his alphabet and counts but doesn't write at all. They will expect that in Kindergarten. Why should I push him in there knowing that he isn't ready. Then, again, there is the school of thought that you set the bar high. Kindergarten for Shea next year would be setting the bar high indeed.

Writing and his expressive language delay, some social issues and the complete lack of potty training makes me think another year in the Developmental Preschool sure couldn't hurt. And, will probably be a nice, comfortable place to be while he continues to work on some of this stuff.

So, this is where I try to peel my mother's mind away from my rational mind. Am I making this decision purely to protect him as long as I can? Probably. Will he be bored? Hard to know. Will he fail? Probably but is that so bad? If everything is too easy for him will he never learn to strive? Maybe. If I hold him back will he be the biggest kid in his grade? And, if so will he pick on the littler kids? Hmmm........

This is a perfect example of the ambiguity of parenthood. Where in the heck is that instruction manual? What to do, what to do?

School Conferences

I met with Shea's teacher this week for school conferences. Even though he is in the Developmental Preschool, they still do conferences just like the upper grades. I was relieved to see it wasn't a full blown, IEP discussin' meeting. Just a nice little conference about how he is doing so far this year.

First the teacher did a little bit of marveling at how much more focused, social and talkative Shea is this year. It's true; he is really getting to be a big boy and now knows what is really expected of him at school. But, again, the changes since we started the gluten, egg, soy free diet have been profound.

She did say that his fine motor skills are still lagging and would like to have the school Occupational Therapist run the Peabody test again which measures development motor skills.

He is 4 1/2 and although he knows how to spell his name he can't or won't write it. If we help, he will do it. If we make dot, dot, dot letters, he will trace over them himself. He is also having a hard time cutting out shapes with scissors.

He was given the Peabody when he was 3 and being evaluated for his IEP. He just missed getting OT services by a very small amount. If they retest now, he may be able to qualify for OT services at school.

Even though Shea sees his private OT every week, so much of being a special needs parent is fighting for more services for your kid. Whether your fighting the school district to get services or fighting the insurance company to cover services, "special" parents learn to fight pretty darn quick.

In fact, one excellent example of the passion, focus and energy of "special" parents is the film documentary, Beautiful Son. Parent filmmakers tell the story of their son Beau who is diagnosed on the Autistic spectrum. A very touching and indeed a beautiful film, I caught on my local PBS station. Check out the website for a trailer and more information.

Warning: hanky alert!

Occupational Therapy or fun at Lauri's playground

Bubble lady mentioned to me last fall, that Shea might have some Sensory Integration issues. Ok. What's that?

Wikipedia says, "is a neurological disorder causing difficulties with processing information from the five classic senses (vision, auditory, touch, olfaction, and taste) the sense of movement (vestibular system), and/or the positional sense (proprioception).

I thought I knew what Bubble lady was talking about. I had noticed that Shea leads with his head; meaning he would whip his head around, bump up against you with his head, lay his head on you and push.

I had also recently noticed that he would get overexcited in group situations and "melt down". He didn't seem to have the coping skills or the language to be able to deal with the excitement and craziness of being surrounded by lots of kids like for example; a playground.

A friend referred me to an on-island Occupational Therapist.

What is Occupational Therapy? Good question. Wiki comes in handy again, "use of productive or creative activity in the treatment or rehabilitation of physically, cognitively, or emotionally disabled people". That sounds about right but it just looks like they are having lots of fun to me.

Enter Bouncy lady or Laurie's playground into our lives. Shea really digs this. Laurie has a big platform swing with ropes to hang onto. She has big jumpoleen's full of therapy balls to jump in. She has big suspension climby slings with different tensions to scramble into. She has a hammock with a big cozy pillow in it. There are tubes to climb through and balls to throw. The place is an absolute wonderland in less than 400 sq. ft. Shea would live there if he could.

She also brings many years of experience working with folks of all ages with all sorts of issues. She seems to have a multi-discipline approach, is always bringing up her observations and suggestions and is really the sort of expert I truly value working with Shea.

We really thought he needed this sort of action and interaction during the winter months when outdoor play is limited. And, we were right. He really loves it. Lauri went away for the summer and we missed her greatly but we jumped right back on the bandwagon this fall. It has become a a key component of Shea's therapy.

Thank you Bouncy lady!

Bubble Lady

Sally gave me a name and a number for a Speech Pathologist/Therapist that she had worked with in the past. I think I had it for months; long enough to loose it once and had to ask for it again. It wasn't until Shea's 3rd birthday neared that I called Marian. I was nervous. I was opening a door on something that I didn't really want to acknowledge.

I remember we talked for quite a while on the phone that first day. I was surprised that she gave me so much of her time. She was very nice and informative; had a stellar resume and seemed a good fit. After I explained Shea's issues as best I could, she said, "Well, he does sound like a child that I would see." We arranged a time and the ball was in motion.

Here is just a quick aside; there are no Speech Therapists on my little island. We have 11,000 people, a rocking grocery store, good restaurants, a couple of bookstores and a movie theater but not one speech therapist. Going "off island" or "over town" was going to be a given. Ok, you do it for your kid.

When we started, Shea did not have any words. He grunted, squeaked, pointed, babbled and hollered. To begin, she did an evaluation or gave Shea more standardized tests. But, she said right at the beginning, "These tests don't really mean a thing. They are snapshots at a certain point in time. In fact, mostly they are garbage."

By the way, we actually do call her Bubble Lady because helping Shea to learn to blow bubbles was one of the first things they worked on. For Shea, just learning to blow a kazoo or a whistle was a big deal. It was months before he expressed his first real word, "up". It was born from a "working hard noise", like lifting something heavy, coming from deep down inside. UGHP! Is how I would spell it. This was indeed a break through for him.

I should probably share a little bit about what to expect if you go find a speech pathologist. First, they are in high demand. Many are not even taking new patients. Marian says that there are fewer and fewer people getting into the field because the insurance companies do not generally cover neurological therapies or only a small portion. I won't get going on the insurance issue, that is a whole post by itself. But, the long and the short of it is; we were lucky to find her.

Also, I need to be honest; it's pricey. Let's just say, I could get myself a facial, pedicure and a manicure plus a tip every week for about the same price. But, I don't question the worth, not at all. She has been integral in helping us navigate this stressful, scary time. She gives us real and legitimate advise on how to deal with school and the insurance company. She offers hope and encouraging anecdotes. She gently tugs us away from negativity and helps us look at the big picture. Frankly, we could not have gone this far without her.

Now when I look at Shea, I really see how far we have come. He now calls her Bubble Lady all by himself. It warms my heart each time I hear it. I know it warms hers too.

Thank you, Bubble Lady.

Apraxia

The first speech therapist that we saw brought up Apraxia as a possible diagnosis. Huh? What is that? I turned to the internet to find out.

"Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe."

More good information at:

http://www.nidcd.nih.gov/health/voice/apraxia.htm

I ran across another very good website focusing specifically about Apraxia with kids:

http://www.apraxia-kids.org/

I did a lot of reading and worrying, then more reading and more worrying. The diagnosis seemed to fit. When we modeled for him sounds or asked him to mimic, he would delay or just sort of stare at us. I kept thinking, "Can't he do it or won't he even try?" He seemed to be able to make sounds on his own terms but when asked to perform he pulled up short. Was it performance anxiety?

Later our wonderful private speech therapist that has been so supportive and helpful to Shea and our family, told me that Apraxia in children is a relatively new focus perhaps 10 or 15 years old or so. She talked about how Apraxia or Dispraxia was originally studied in stroke victims who had lost speech. The words are there in the brain but won't come out as speech.

Wow, I thought, how frustrating. If this is really the problem, how the heck am I going to help my kid?

Communication is crucial for human contact. How is my kid going to have a productive life without being able to talk? Those were dark days. But, we got to work and started signing.