SPIO suit

SPIO stands for "Stabilizing Pressure Input Orthosis" and is used to provide all over pressure for children with sensory issues. It works for both hyper- and low- sensitivity and is designed to give that steady pressure/input all day so the child feels more organized and ready to tackle other things. The pressure also helps kids like Carver have a greater sense of body awareness. It is in two pieces, a shirt and pants. They overlap a lot and stay in place great.

It is generally recommended to give a 2 week trial, every day all day under clothes. Here the pictures are without so you get an idea of the super tight "super suit" concept. I ordered one back in July and have 90 days to try it out and send it back. So we're taking advantage of the cooler weather to give it a shot. Honestly, I can't tell a difference. Not this week anyway. I haven't given up yet, though. I'll keep trying it.

The black suit is the official SPIO suit. It costs $200 out of pocket or $380 to insurance. Ouch!! It has to work pretty well or it's not worth it to me. Hence, the red suit. My fabulous aunt Joann is a whiz of a seamstress and she duplicated our black one in red. The lycra is a little thicker and tighter, but it went on okay. And for less than $10, it's well worth a try! I have to say that black isn't as noticeable, but the red is pretty fun. I wonder about a white shirt for church days... :) hard to imagine those red sleeves peeking out of his short sleeve white button-up, huh?

The pictures aren't great, but let's face it - Carver isn't photogenic. Hardly ever do I get a decent shot of the kid. So here's the best we can do!

motor planning and more

Speech was yesterday. She brought the evaluation results -

Auditory comprehension: standard deviation -1.67
Expresssive communication: SD -2.07
Total Language: SD -2.07

Qualification for therapy is determined by standard deviation, beyond -2 is considered enough in one category. Less than that and you'd need to qualify in more than one area. He might qualify in other areas, as well, but this number alone is enough to guarantee preschool. Reading her report was sobering. It was a good reminder of how far we have to go, of how much more I could do with him. I'm grateful that school is starting soon and that our routines are ready to be revamped. I'm going to try to schedule in more Carver play time.

I had him eat yogurt when Christina was here (something she'd wanted to see in the past) and it was really good. I use a dry washcloth to wipe his face and it helps him feel the drips and mess. He is getting better at feeling that, it's just hard for me to always be attentive to him when he eats. Christina also noted that carrying him to the sink to rinse him off afterwards is not only going to kill my back, but misses the opportunity to practice Carver's self-cleaning skills. Giving him the washcloth to wipe his own hands and face extends the snack (and therefore attention span) and also gives him a sense of confidence and an important skill set. Along those lines, having him climb into his booster seat is important. Of course, these things are difficult to take the time for in a busy house. But efficiency needs to take a back seat right now!

We did play-dough, his favorite thing. She had him open the lid and said... "OH"... and he finished with "-pen." Or kind of. Really exaggerate the OH. I can do that!

She suggested sports wrist bands to wipe drool again. I'm going to try to pick them up next time I'm at the store. At least I can have a towel handy. He's always stealing my kitchen ones anyway.

Poking 1 finger in playdough to isolate those muscles. Really let him do things himself. I need so much patience!! :)

She asked about the little milk curdle he had in his mouth, the last hold-out from years of spitting up. I could tell she was surprised and curious at what caused it. I'll bring it up AGAIN at his well check. No doctor has ever expressed interest or concern about it, no matter how many times I bring it up. It's better than it used to be. Now it stays in his mouth at least.

I asked about his inability to communicate awareness of the past. She said it was all connected to his poor motor planning skills. 2 step play builds cognitive awareness of sequencing, knowing what comes before and after. Interesting to consider how interconnected our senses are and a specific example of how play is work for babies and toddlers. Most babies learn these things naturally, without extra effort (Grace, for example!) but Carver needs to be taught each skill separately and then practice. Talk about exhausting for him and for us! He is doing so much better at understanding "now" and "later" - I can see how we're working towards remembering the past. Also, she suggested family photo albums of vacations in the past, etc... Good reason to print another shutterfly album!! :)

So I have a lot to work on. And I shouldn't just be blogging about it! Back to work!

the flip side

I haven't really done more than speech therapy reports here. Those are good times, where I feel direction and hope for Carver's improving communication. There are many, many other times that things are just HARD. Without intending to complain, here's the flip side.

Carver always needs something in his mouth - pacifier, food, gum, sippy cup. It's an exhausting balance to try and fill that very real need with age appropriate behavior while maintaining a responsible calorie intake!

He doesn't play by himself. He can keep himself busy occasionally, but very rarely is he doing something I approve of. It is difficult to fold laundry, clean bathrooms, make dinner because he wants my constant, undivided attention. I know that some of that must be my own doing, giving in to his demands too often. But he lacks skills to do imaginative play on his own, patience to do fine motor projects and self control enough to stay out of trouble. I'm not sure how to manage this one.

He is very messy. He wants to eat all the time, as I've already said. So I am constantly battling over food. Once he eats, he routinely smears his yogurt on the table, dumps his cup of milk, dips and tears, throws, etc... It's frustrating to say the least. By the time I've cleaned up snack #1, he's grazing for more milk, gum or snack #2.

Today I tried to do some cleaning - getting to things that never get their turn around here. I managed to do more than usual, but had to turn on movies and in the end, I'm frustrated because it was such a battle to keep him off the wet floor, out of the piles I was sorting, etc...

It has not been an easy day. But we've had worse. Sometimes I feel like it is very hard to be Carver's mom. But he's so sweet taking me by the hand to invite me to play with him. I know that doesn't last! He's very into Mommy right now, which is fun and very tiring. It makes me grateful to have preschool to look forward to. He needs the attention and therapy there as much as I need the break around here!

Evaluation Day!

That means that our ST came with her materials to evaluate Carver in his receptive speech (what he understands) and his expressive speech (what he can communicate to others). She'll bring the results back next week. She had him point to things in her book and it was really interesting to see how well he did identifying things UNTIL she got to a page and said, "what do we use to watch a movie?" and he was supposed to point to the TV or "what does Mommy use to cook dinner?" for a pan. He might have been tired, but he wasn't getting those at all. I wonder why. Identifying big and little is also nearly impossible for him.

I also made a list of the words he says, both for the words themselves and an idea of which sounds he makes. I think he's at about 50-60 words, but I keep remembering other words, too. Lots of those he signs, as well, and lots of them are words only Derek and I understand. I get excited about our growing list and then remember occasionally that he very rarely puts any of those words TOGETHER (just bye-bye + word sometimes). We still have a long road ahead of us, but I love hearing Carver's words and his inflection in particular.

He's trying to dress himself right now. He holds his foot with his hand to put it in his shorts. It's so interesting to watch, adorable and heart-wrenching at the same time. It's just so hard for him to tell his foot where to go that he tries to help it out. We can't help but be excited for all these little signs of progress!

Carver is really interested in colors and said "orange" today during therapy. I'm excited that he's understanding that there are names for the colors that he sees. He also LOVES the Letter Factory movie. It's big on the list for his birthday in October. He sees letters now and says "ck, ck, ck."

And how's this for cool? Carver's experience with being evaluated last fall and not qualifying, then qualifying in the spring in 5 areas made them rethink their evaluation process. Children's Therapy Center has changed their evaluation and training because of him and a couple other kiddos like him! good for them, good for Carver!

More to add to our bag of tricks

Speech report, speech report... this is SUPPOSED to have pictures, but our camera DIED today. What will I do without it?!

Oh, well. Here's what we talked about today:

GUM - we're ready to try this again (he loves it but played with it after awhile and I got more than a little tired of picking gum out of things). She suggested 1/2 piece sometimes, 4 pieces other times for different strengthening of the muscles in his mouth.

CHEWY TUBES - just a therapy resistance band cut into 1 ft. length, tied in a knot at one end. He can wear it on his wrist, chew on either the knot or the other part. It's more age appropriate and all that. So we have two colors: red is softer and the blue is more resistant. I'm not sure which he'd prefer because he WILL NOT even touch them. He has an instant aversion to them for some reason. Grace knew right what to do with them so I'm going to let her show her big brother how fun it can be. :)

NUK BRUSH - these are common enough and another alternative to the pacifier. I got one of these from our ST, too.

BACKPACK - we loaded up his backpack today and he loves it. He loves putting things in it, taking them out, wearing it around. He went to the door and said, "buh-bye." He gets to practice pushing and pulling and using a zipper. We'll be playing backpack a whole lot more.

PLAY FOAM - I finally found this at Target and it's fabulous stuff. The girls love it as much as Carver. It's exactly like playing with rice krispie treats when they are still warm. Cool stuff, more resistant than play doh and less messy. It leaves a little gummy film on the counter/table and the beads sometimes turn up after the fact on a shirt or something, but otherwise it's perfect.

TOOTHBRUSH - I finally got that vibrating toothbrush yesterday and Carver LOVES it. He's going to break the bank buying new vibrating toothbrushes. His ST said it's wonderful for his mouth, on his lips and cheeks - all over. Let him have it all the time, maybe one for actual brushing to leave in the bathroom to stay clean and another one for anytime.

I think that's it. We talked a bit about potty training, where he's at and how it's good enough for now. He wants to sit on the potty, wipe and flush. But the feeling the need is obviously not there. she encouraged him to climb into his booster himself, which he should be able to do with some practice. It's so easy to just do those things for him. It's BETTER to let him learn to do it himself.

Next week she's going to do the evaluation, preschool language testing and speech related tests. This is the evaluation that will go towards his preschool eligilabity. Hopefully he'll be grumpy and uncooperative, right? the school district will evaluate him in the other areas (motor skills, etc...) closer to his birthday. I'm not too worried about next week. It'll be nice to have everything decided and squared away with preschool, but until then I'm just going to be grateful with what we've got and all the progress I see in Carver. He said "dirt" out of the blue yesterday and took turns so nicely at the park with our friends. I couldn't ask for more!

3 cheers for preschool!

Today was speech therapy - I love these days. I feel all fired up, full of new ideas and energy to tackle our problems. Our ST (speech therapist) brought an OT (occupational therapist) to help zero in on the sensory issues. GREAT ideas came out of the talk and play. First of all, Carver just eats up all the attention. He loves these friends who come to play with him. It's hilarious to see him show off and so good for him to have special time. He wanted to wear Daddy's hats and it was so interesting to watch him try to feel that it was on even though it was so loose, searching for a way to make it tight. I love seeing more and more confirmation that his "diagnosis" is perfect.

Here's the tips/ideas that came from today:

pictures of our routine - ST brought laminated cards she'd made from pictures I sent of our daily routine to put on a velcro strip. I can put them in order, let him pull them off and see what's coming next. It's not attached to anything yet, I'm working on how to use it on the go.

thick drinks from a straw (strengthen muscles, satisfy oral cravings). Maybe use frozen fruit/ice to reduce calories. :)

satisfying snacks - crunchy, chewy, spicy, etc... wasabi peas, frozen veggies/grapes

compression exercises -saying "squish" as you press in and down with your hands on chest/back

inflatable seat cushion - gives opportunities to wiggle and sit in his place ($3 REI for an inflatable camping pillow)

heavy backpack - 5-10% of his body weight, builds muscle tone and body awareness

play with texture - rice/beans in a container to scoop, feel (rotate for variety). Can use a sheet underneath to contain the mess and make it easy to clean up.

"chewy tube" - Provides more stimulation, more age appropriate than a pacifier. ST will bring it next time.

rubbing his face, cheeks - stimulate muscles, kind of "wakes up" his face.

jumping - I'm still going to keep working on it. Off the couch into cushions, the stairs, anything.

vibrating toys - on his cheeks (when are you going to get that vibrating toothbrush, Rachael!!)

We talked about brushing today, as well - a technique used more for hypersensitive kids, but one that might help Carver. You use a small hand held brush 5 minutes at a time, every 2 hours-ish for 2 weeks or so. The protocol is taught by the OT and needs to be done correctly to be effective. It triggers the brain to release neurochemicals that help organize these kids. It might be an option later, but the spio suit (more on this soon) is a better approach for school situations because it doesn't require any special training. He'd just wear it under his clothes and we'd be set. So we're going to start with the suit and keep brushing as a back-up plan.

They noticed how much more he's watching our mouths to imitate sounds (YEA!) and his efforts to speak continue to increase. He was drooling a lot. We changed his shirt just at the start of therapy and still, there was a good 4-6" band under his chin at the end of the hour. I think that he drools most when he concentrates on other parts of his body. He worked hard today, just playing around with them. He wanted his "yum, yum" (pacifier) the last 5 minutes and found it on his own after begging for awhile and searching high and low, so I let him keep it. He was exhausted and is napping now.

He handled his redirection very well today when he was sitting on the piano keys. He found a "wheels on the bus" book with the song printed at the end so marched straight to the piano and wanted to play it. how cute is that? cuter than when he wanted to turn around and sit on the keys. No tantrums over the redirection, though. that was great. He handled the "no" for a movie better, too.

But the best news was.... drumroll.... our ST said he's a shoe-in for preschool in the fall. She's be VERY surprised if he didn't qualify. The district rep who came in the spring indicated to her that he would be a great candidate. HURRAY!!!! I've been hoping and trying not to hope and now I just feel so grateful and excited. You talk about school around Carver and he says, "me, me!" with his arm up. And a bus that comes to our house to get him? It doesn't get better than that. AND the good news just keeps coming. After he meets all his goals and doesn't qualify for the therapy aspect of the preschool, he will have first choice to become a peer model and STAY at the preschool til kindergarten. We'll have to pay at that point, but I don't think it's an expensive program. Other districts don't let the therapy kids come back as peer models so I am thrilled. Maybe this is one of the reasons we felt so good about this area - maybe living here is all for Carver.

My heart is always full after speech therapy. It's as much for me as it is for Carver. I don't always get to try everything they suggest because of budget/time constraints, but I do what I can. I can't say enough what a great program this is!

Sensory Processing Disorder

You can read about SPD in detail online here and here. But those are general explanations. For some, this means hyper sensitivity to their surroundings, but Carver has LOW registration. Here's what that means for our little boy:

Carver has difficulty processing and organizing what he's getting from his senses, but not just the 5 we all think of. These are the 3 senses that most relate to Carver.

Tactile is somewhat straight forward – relating to the sense of touch. Recommendations include vibrating toothbrushes, deep pressure activities, using puffs and loofahs in the bath, shaving cream, lotion, squeezing playdough, playing in the sandbox, with containers of dry beans/rice/pasta. This system has 3 majors kinds of difficulties – “tactile defensive” or oversensitivity, “tactile seeking” which crave touch input, and “poor tactile discrimination” which have difficulty with hand skills/fine motor. Carver fits into the 2nd two categories, which must be a possibility, as well.

The proprioceptive system is the input from sensations related to movement of the muscles and joints. It tells the body where the limbs are in relationship to each other without seeing them. So his movements are clumsy, stairs are difficult because he can’t see his hands, he doesn’t pull down on the back of his pants to take them off, he probably likes mouthing toys because he’s looking for more input than the rest of his body is supplying. Treatments include big physical activities, pushing and pulling heavy objects, hanging from a bar, jumping off things, climbing on parents and furniture, tug-a-war, blindfolding activities, etc…

The vestibular system is similar, but more about where we are in space – gravity and our surroundings. I see this in Carver in how he gets nervous up on the playground equipment, his clumsiness, poor bilateral motor skills (coordination between right and left sides of the body), high level of activity making it difficult to concentrate on a present task, poor auditory processing skills. Activities for treatment include swimming, gymnastics games, jumping, trampolines, swings, blanket “burritos,” rocking, rolling up and down a hill, bike riding on slopes and flats.

So there you go! We just love him to pieces, we have good days and bad days, but we are hopeful that we're headed in the right direction.