Friday, September 26, 2008

Back in the swing of things

I'm feeling all better, I had my hard day and now I'm back into regular mode. I'm excited and grateful for all that we've seen in terms of progress and we have much to look forward to!

We didn't have speech until this week. Wednesday to be exact. She answered a lot of my questions, thoughts about preschool. I should be able to take Carver to observe the preschool, maybe ride the bus with him or follow it the first couple days. They teach standard preschool curriculum - shapes, colors, etc... potty training is a high priority, as well. I've been dreading that for years, seriously. But if they want to try it, we'll do our part. I guess it's got to get worse before it can get better. Pull-ups are so stinkin' expensive, though! She thinks morning would be better for Carver, as do I. I need to call today since I still haven't heard from a preschool teacher.

Our ST said that the term for Carver's speech difficulty is "apraxia" which is basically poor motor planning in your mouth. There are 3 types/degrees. The first is just verbal - difficult with speech. The second is oral and relates to swallowing and eating, drool, etc... The third is general apraxia and affects the entire body. Despite Carver's lack of coordination in his motor skills, his apraxia is somewhere between verbal and oral. Swallowing and eating hasn't been a problem, but he obviously has a hard time containing his saliva and feeling drips, etc... This is not disheartening to me. It is just a name for what we've already known. Having a name gives me more books to read, websites to browse. Check out for more on this.

Latest successes:

Lots more words strung together. Mostly 2 words, sometimes 3 if you disregard pauses between them. Even "green lawn mower."

I feel like colors are getting better for him, he's right more often than he used to be. :)

He's counting. I swear I hear him get these right half the time, even up to 10. It's hard to decipher his language, though, even knowing what he's trying to say. Bless his heart for trying!!

He's been doing much more imaginative play - crawling around and making animal sounds. A snake on the kitchen table for example or a lion crawling around my room. I might limit animals to the floor, but it's so cute.

He also assigns familial roles to his toys now - moms and dads mostly. I love seeing that. and usually the dad is the big one, so he's thinking about it.

He sits through books better than he used to, listens and wants to talk about the pictures and the action. He loves Green Eggs and Ham right now. And truck books. Are you My Mother, too? He likes to answer "no" whenever I read, "is the cow his mother? is the dog his mother?" It's great!

Carver has been learning to be more gentle with Grace, even trying to play with her a little. The other day she was trying to tickle him and he looked totally surprised and unsure what to do. He let her play around a bit and then stood up and wanted to squeeze her. It was sweet to see him want to show her affection like that.

He's talking about bubbles and pancakes and loves to make pretend pancakes in the bath.

I could probably keep going, but this is enough for today. Thank you to the many friends and family for your support and love on my rough days and on the good ones, too.

Friday, September 12, 2008

The Short Bus

Before I had Carver evaluated the first time, almost a year ago, I had to prepare myself emotionally to hear potentially heart-breaking news. I wanted help badly enough to move ahead and really haven't looked back. I have felt excited and encouraged by our help, almost all the time.

Today I took him to be evaluated by the school district. The preschool is at a different elementary school than the one his sisters attend and I wandered around a little, trying to find the office. We did a vision/hearing screen first - wow! I had no idea they were so creative testing vision for non-communicative kiddos like Carver. She dropped red felt-like balls (like those fuzzy kind you get at craft stores) of various sizes, starting from golf-ball size down to a pea size and smaller. She watched to see if his eyes followed the drop. Interesting, huh? Then she had him point to dots of various sizes, each card had a smaller one than the one before. He found them all! So he passed that. The school psychologist met us there and led us back to the preschool area, the special ed portable.

It had low tables, kitchen toys, a room full of toys, even a TV and a couch. There were 3 women waiting for him, who all greeted him warmly and jumped right in to play/evaluate. One was a language pathologist, one was a physical therapist, the other was evaluating his cognitive abilities. I get the sense that this last one kind of makes some decisions about placement with teachers and whatnot. I can not say enough how wonderful each of them were. I have profound gratitude and respect for those who work in special ed, not only for the kids they bless every single day, but for the parents. It is an overwhelming feeling to see how these adults absolutely loved my son while we were there. Their patience and willingness to play with him and work with him on his terms was amazing. I watched a little of the evaluation, while the school psychologist got paperwork ready for me.

It was the same sorts of things I'd seen before. Asking him to string beads, make towers, point to pictures, identify pictures, catch a ball, throw a ball, jump off a chair, answer questions, use a marker, etc... The only surprise today was that he CAUGHT a rec ball one the first try! I was shocked. I had to tell them it's very unusual, don't give him too much credit for that! I answered some of their questions, as well. Then I filled out forms about his self-help abilities, social interactions, things that they can't see in a setting like this. That was hard because I want to be honest, but I know my perspective is skewed. Some areas I'm sure I gave him too much credit, some I probably short-changed him. That perfectionist in me is hard to shake, but I did the best I could. After all that, we reviewed the results with each specialist at a table while Carver had a snack.

Here's a generic example I found online of how it works (statistics 101), but also a little backwards in terminology. I'm going to focus on the left-hand side of the curve, representing delays in development. The middle sections "same as others" represent "average," then that next area labeled "probably" is called "moderately delayed" and is between -1.5 and -2 deviations from the norm. The "definitely" section on this curve is known as "severely delayed" or more than a -2 deviation.

His best area is social, which makes sense. He's incredibly social. Even in the normal range for his age, on the low end. Right around a -1.3 or so. But tested as a 3 year old, he might fall off into the moderate delay category. Everything else, gross motor, fine motor, expressive and receptive language was about -2 deviation or representing a "severe delay." To qualify for the preschool, you need to have 2 or more in the moderate section OR at least one severe delay. So he's definitely in!

We talked about preschool options a bit, they have two afternoon classes so the class size is smaller, but the younger kids (nappers) are usually in morning, so we're going to wait and see what they decide to do, based on personality of the classes and teachers and sizes and all that. I should hear from a teacher soon. Preschool is Mon-Thurs in either case. I'd prefer mornings since he IS still napping about half the time and because I really believe it'd be much more effective if he wasn't super grumpy. The bus WILL come to our house and get him, if I'm willing to do it. He has some issues with separation sometimes, but I really think he'd LOVE to be on a bus and that it's important for him to feel grown-up in that way.

I should be ecstatic. This is what I've been hoping for these last months. But instead, I came home and cried in the bathroom for a minute before going to pick up Ellie and Grace from my friend's house. And still, Melissa got to see me breakdown again after Ellie ran out to the car with Carver. I don't know what happened, but it all just hit me again. I've been so focused on getting him the help that he needs that it hadn't all sunk in til just then. I felt all that heartbreak for my little boy, that he can't do things that other 3 year olds can, that it might be a LONG time til he can read and tie his shoes and not drool. I hurt for the future that is still uncertain for him. They asked today if we'd done any neurological testing and indicated that after we get him settled in the preschool, it might be a good idea to run some tests and check for medical conditions causing his delays. I am prepared to do that, but it hurt to think of all the issues and struggles we haven't even faced yet.

He takes his chewy to the bus stop and kids ask almost every day (sometimes the same ones every day!) what it is, what it's for. He's going to ride "the short bus" and have special ed. He will wear a special suit under his clothes. The older he gets, the more he's falling behind. Will he always be labeled? Will he fit in with other kids? Will they be mean to him? Will he get the help he needs? Can I do this?!

I have been totally taken by surprise to feel this way and decided to let myself have a minute or two to cry and mourn for what we have missed and what won't be. But then I'm going to pick up where I left off and be the advocate that Carver needs, getting answers and help and loving this boy the best that I know how.

Wednesday, September 10, 2008

The chewy and more

Today was therapy. We played with the dollhouse and Carver and Ellie had a blast together playing peek-a-boo through the windows. our ST commented on Carver's extended attention span playing with her. It takes some motherly intervention sometimes, but the girls can be very helpful with him!

We talked about limiting the "yes/no" questions and trying to prompt Carver to say words on his own, now that he's imitating us so much more. Which he is!! Almost everything we say he tries to copy. His sounds are getting more clear and you just see him watching our mouths and trying so hard to get it right. He thinks he's doing something great and we're excited to see growth happening. We've really turned a corner in that way.

She said that his language is currently limited to "here and now" which works to his advantage since it's easier for people to understand because there is ALWAYS context for his words. So what might seem to be a challenge to overcome definitely has a "silver lining."

Getting him ready for school will include helping him express what he needs and wants in multiple ways. She also suggested helping him "show me" or ask in another way by telling him "my ears didn't understand that" rather than placing responsibility (AKA blame!) on him for a lack of understanding. She said that self-esteem really starts forming in these years and we don't want to make him feel like he has problem that he can't overcome.

At the park last week during Lydia's soccer practice, he was driving with the steering wheel on the big toy and I asked him if he was driving. He looked delighted and said, "mm-hmm." Then thought a minute and said, "bus." Score for Carver!! Imagination, language, answering question, playing with me - it was all there. It was a happy mom moment. He also used his handy string to give the bus "gas." I LOVED it!!

He said, "my chocolate chip" the other day. Really, chocolate chip is one word since he doesn't know they are separated. But the my+ phrase is so wonderful to hear! It's a classic toddler expression, too, huh? :)

I've been working on limiting the "yum-yum" and especially encouraging the chewy tube, which we call his "chewy." Here's a picture of it. It's 1 foot long.

And here's Carver with it in his mouth. I think he usually prefers to stick one end in his mouth like a straw and he DEFINITELY prefers it loose to being tied in a knot.

His speech therapist said that using it at all is a step up from the pacifier, even though having it in a knot around his wrist would be helpful for school. I'm trying to bring it to the bus stop (that's 90 minutes of my life every day, remember) to get it into routine. And I hadn't even thought of this, but the ST said that was perfect because if I keep working on that association, it'll be really natural to send Carver with it on his own bus in a month and a half. It's nice when things work out like that, huh? I'll pretend it's because I'm such a wise mom. :)

Kids at the bus stop DO ask what it is and it's a good introduction to the many issues surrounding kids with special needs. I just say it's for him to chew on instead of a pacifier. That makes sense and answers their question directly. Works for me!

Carver's climbing into his booster SO well. Today was a hiccup and he didn't do so hot when our ST was here, but otherwise that's helping a lot. I'm trying to teach him to wash his own hands at the sink. Another good step in the direction of self-help.

Friday is the district evaluation!! 2 more days and I can get a whole lot more answers, things to plan on. Oh, and a new learning curve comes into play now that I've got the hang of the SKIP program. It's about time to up my sensory education a notch or two!

Wednesday, September 3, 2008

sunny day in the sandbox

Today we did therapy outside and it was BEAUTIFUL. Finally the summer days I've been dreaming of, right after school starts! :)

We practiced walking on the edge of the sandbox and he did great. We practiced concepts like under/over, in/out. Mostly it's a great sensory activity for him. I asked Ellie to give him some space while he walked on the wall and he repeated "space" 10 more times, delighted that he could say it himself. What he thinks it MEANS is another story, but the word is a great start! :)

Ah, the SPIO suit saga continues. But I think we've reached a happily ever after. The red one is great, but the top started to slide up over the tummy (reminds me a little of pregnancy...). One day at the park, he wore his SPIO and I started to hear little snagging sounds on his pants while he climbed on logs and immediately panicked about our $200 lender. I whipped it off him and discovered a pulled seam in the top at the same time. YIKES! I talked to our ST today and she called the SPIO rep and they're getting us a new top (their fault, not mine on the pulled seam - whew!) and they don't mind delaying billing til January when our insurance gets upped a notch. At least I am banking on that increase in benefits. ANYWAY, next week after we get the new top, we'll be giving the SPIO suit another go-around and see what we think. She said to watch to see if it helps his posture at all - I think I'll research what it might help so I can pay better attention. I really like the idea of something helping him all the time - especially at preschool - so I am happy to try again.

Also, our ST recommended talking to the pediatrician about the curdle-y milk spit-up thing. She thinks it's worth investigating, especially if it might a reflux issue fueling his desire for milk products. I'll ask in October.

I let Carver play in the bubbles in the kitchen sink this morning and learned a couple new tricks to curb the mess. Kind of embarrassing that I didn't think of these sooner...

1. use a lot of soap so you don't need as much water to fill the sink with bubbles.
2. don't give him full size cups - just measuring cups and spoons

It made SUCH a difference in the mess. He still tried to put his leg in a few times and dunked his head in the bubbles once or twice, but the mess was manageable. I don't mind changing his clothes afterwards, it's the water streaming down the cupboards and puddling on the chair, rug, floor, counter, etc... that drives me nuts.

Carver learned to say "peach" this week for his yogurt and is so proud of himself. It's wonderful to see how excited he is about words. He even bit his lip for the "f" in "off" after watching and practicing and trying so hard. What a challenge to have everything take so much effort. I admire his efforts to do things like his sisters and friends, no matter how hard it is for him.