Monday, December 29, 2008

a SENTENCE!!

The other night Carver and I were cleaning up his big beads and strings that G&G made him. He reached and stretched to get one under his bed, came up and declared: "I did it!" His first sentence and it couldn't have been more appropriate.

A few days later, I was telling him he couldn't have more water (the kid had probably 12 ounces at dinnertime) because he'd wet the bed. (We've had that problem recently and he's still in diapers!) He copied right back, "wet the bed" clear as day. 3 whole words together! YIPPEE!

I have wondered lately how often he cognitively speaks in sentences that we just don't understand. Often there are strings of sounds that might be words, but we would never know it. Speech delays are interesting in that way because it's SO difficult to interpret what represents a lack of communication and what is a cognitive delay, as well. I guess we'll never really have answers for that one, but I'm sure excited to see this progress.

Wednesday, December 17, 2008

snow days for Carver


This week we've been snowed in and missed 3 days of preschool in a row. I can't tell you how much it's made me appreciate preschool even more, just when I didn't think that was possible! :)

Yesterday in one phone call of reasonable length, he grabbed the butter out of the fridge to go squirt/shoot his sisters. One stick in each hand. As I put it back, I noticed the mustard on the kitchen floor, thankfully unopened. MINUTES later, he was carrying around the chunk of cheese from the fridge. Then it was the toilet paper, pulling it off with the intention of blowing his nose in it, but he doesn't have the skills to know how much is enough or how to stop - it's addicting, that TP. Then it was pushing the stool up to the sink to try and get water in a little cup he'd been playing with. Then to the pantry to try and help himself to fruit snacks, which brought the whole tub of snacky food down to the ground, spilling only slightly this time. I'm not exaggerating when I say that nearly every time I turn around, he's into something else inappropriate. He might just be running through the girls' play, taking toys from Grace, opening the front door because he can and because I'll ALWAYS come running to keep the snowy day outside. Maybe he's asking for play-doh, emptying something in the floor of the closet - something loud and with many pieces, a puzzle or the box of dominoes. Later, it was the pipe cleaners from our morning project with the girls spread all over the kitchen floor again.

I can see that he's searching for something, that he NEEDS something. But what? Why doesn't play-doh fix it? He's not hungry for food, he's hungry for sensory input. This is my sensory seeking boy - always seeking, trying to find it. I try to give him big squeezes, tight hugs, throws onto the couch, play-doh time, coloring, sticking connect-four style circles into a Fisher Price Noah's ark game. He loves the time with me, but I still never feel like he's satiated. Just writing this helps me organize my thoughts and try to see patterns. Because just like Carver, I'm always seeking answers and help.

Snow days are also hard because his big sisters are both home all day. Not only do they need something to do (even the best 5 year old and 7 year old can't entertain and feed themselves ALL day!), but they boss and nag and yell, "Car-VER!" in that way they've certainly heard their mother address her sweet boy. It's exhausting. I'm impatient with their impatience and that's no solution, for any of us.

We have one more chance for preschool tomorrow and then it's winter break anyway. It's going to be a LONG time til Jan 6. I've found myself slacking in our sweet preschool routine. It doesn't require as much of me and he's so fulfilled. Now it's back to the pre-preschool days (can you say that?) and I'm back to searching for more than a basic understanding of SPD. I need to know how to satiate this boy, which activities are going to fill his need. Am I supposed to be trying to calm him? Or get him going? I'm never sure.

Sunday, December 14, 2008

Recent Successes

Here's a few things I don't want to forget:

Carver learned to JUMP a couple weeks ago! HURRAY for him! It's so cute, a full-body wind-up for a very little bit of air cleared by those little boy toes. We cheered and cheered!

Carver ate his yogurt without a drip TWO days in a row after preschool last week. He used his spoon to wipe his chin, too. I really believe it comes from a fabulous sensory diet at preschool. He comes home on top of his game. It's amazing to see.

Our dear friend, Sue, dropped by with a surprise for Carver. A brand new Sonicare toothbrush! She happened to have a stash at her house and wanted to share with us after reading his blog. Not just Carver, though - even mom and dad got one! I was so touched by her thoughtfulness and the generosity of her gift. WOW! Although it's going to take me some practice to get used to that kind of vibration in my mouth. I can't believe Carver loves it so much! It's pretty intense for typical mouths like mine. :) He LOVES it, though. In his mouth, on his cheeks, lips, neck, even his armpit once. (Yum!) Thank you, thank you, Sue!!

Wednesday, November 26, 2008

Carver's instrument of choice


Carver LOVES to play our harmonica. Well, it's actually Daddy's "Official Boy Scout Harmonica" and now a bit dented and covered in Carver spit. But it's a great alternative to the yum-yum and I don't even get tired of the noise!

Monday, November 24, 2008

Parent Teacher Conference

I met with Carver's teachers on Friday and loved it. We didn't address goals/skills, just chatted about how he's doing, what works and what challenges there are.

She said that he began the year very bus-oriented. He'd listen for cars and trucks and start shouting "bus" if he heard something rumble by. But she's noticed him become more school-oriented, which is good! He comes in super excited and likes to help everyone with their coats and backpacks, which all get hung up. Sometimes that involves yelling, "bus, bus!" and causing a little trouble with those who don't like loud noises. He's also a bit of the town crier at snack time, when he likes to announce, "clean up!" when it's time to clear dishes and wash hands. That brought a smile to my face. He loves that role at home now, too. It's pretty cute.... and loud.

They have circle time after everyone is in and settled and this part is tricky for him because it's hard to sit flat on the ground. He has been doing well with a rubber cushion:



with a wedge shaped foam on top:


His teacher thinks it's hard for him because it stretches his hamstrings and he's a little stiff. I believe it! She feels like he's making progress and now only uses the rubber cushion. I'd like to get one for home use, too, but we'll see how that fits into the budget right now. (I found www.therapyshoppe.com in my searching and it's an AWESOME website. I'm really excited about it!)

We talked awhile about Carver's desire for any attention, negative in particular. He has been known to sweep things off the table at school (just like at home!) and his teacher had a stroke of brilliance one day completely ignoring him. She pointed to the mess and didn't look at him. It took him a minute of waiting for something to happen, but then he hopped down to get the toys. If only I could always be so patient! It's good motivation for me, that's for sure! And it also impresses me to hear how they handle his antics. That same day he struggled to finish his "job" of beading (something he excelled at just two days before), he took 20 minutes to finish it before joining the rest of the class. He heard them moving on and doing fun things and finally finished. He was putting together an "if... then" behavior pattern, which we are working on at home, as well. Hurray!

He loves adult praise and attention so he LOVES his time with the specialists, his speech therapist and physical therapists. That time has been really productive, which is great to hear. He definitely likes one-on-one time with grown-ups. He invites me for that kind of play ALL day! :) I'm glad that it's working to his advantage in therapy.

The class is growing to 14 students in January and his teacher is pushing the district to open another class. It's really too many special need 3 year olds, even for 3 teachers! They don't even have peer models in their class. I'm keeping my fingers crossed, for everyone's sakes. I'm sure it's not easy for the district to balance all the needs in the schools, but this seems like a pretty important one to me.

We talked and laughed together about how Carver's diapers are a little snug and wondered about pull-ups. They had a good point about the stretchy sides being more comfortable. I think I'm still too cheap. And they aren't easier to get on. Besides, they aren't as absorbent since they really aren't intended as diapers. Maybe I'll try another brand. And hopefully Carver potty-trains before his diapers don't reach around him anymore! :)

Overall, I'm impressed and pleased with what I've seen at school. The projects he brings home are well-thought out and represent hours of classroom work, literally. These kids get very specific directions on the smallest details. What patient teachers! They are making all the difference for our little guy!

Monday, November 17, 2008

some extra support for ME!

Our fabulous former speech therapist organized a support group for moms with kids like Carver. We met the first time on Saturday morning at a local coffee shop and it was wonderful. I was a little hesitant to commit to one more thing right now, but this is definitely going to be worth my time! It was neat to hear other moms have so many similar feelings and experiences, but at the same time have enough differences that we can help each other. One mom just swears by those SPIO suits for her two boys and hearing her testimonial motivated me to give it another strong push. After a month of consistently wearing his SPIO, her son stopped drooling. I think, for that kind of success, it's worth another try! So I'm going to give it a really dedicated effort through Christmas and see if we can see some progress.

I also realized that I've been SO very blessed to have incredible support of friends and family. I am really grateful for how understanding everyone has been. I'm looking forward to learning from these moms of SPD kids and broadening my support group even more.

Wednesday, November 5, 2008

birthday, well-check, the yum-yum and preschool updates

Updates, updates. Here we go:

His birthday was so much fun. We had a big cookie and ice cream, but best of all Grandma and Grandpa were in town. Carver LOVES his Grandpa E. It was such a great treat! We had a fun day together.



Here he is, trying to open a present with his beloved Buzz lightyear gun.



Well-check. Of course I forgot to post back then, but better late than never. So I also forgot to ask the doctor if she'd recommend a genetic screening of sorts to rule out any medical condition. I wasn't excited about that, but honestly I just forgot. Pretty lame mom moment, but it's the truth. I love the stats, so here they are:

Height: 38 3/4 inches (90-95th percentile)
Weight: 42.8 pounds (above the 97th percentile)
Body Mass Index: 20.1 (above the 97th percentile)

There is some concern there. Obviously, he's a big kid and he's both thick AND tall. But the BMI worries the doctor a bit - thankfully, she's a wise woman who said we have enough to think about right now. Portion size is the greatest way to help him out, but it's terribly hard to say "no" to a grumpy SPD kid who won't leave the kitchen. I'm not too concerned right now, but I also see that his size doesn't help his coordination and motor skills any. I'm not WORRIED, but it's on my mind.

The most interesting part of the well-check was how different it is now to me. It was very bland after evaluations/therapy. I felt like it was important and I wouldn't skip a well-check, but my concerns with Carver are mostly non-medical. I told her about speech therapy, preschool, etc... I think I did most of the talking! And even his eczema/molloscum contagiosum spots are something that I've already dealt with enough to know there's nothing more anyone can do. I have been used to seeking counsel at these appointments, getting answers, but this time I caught HER up on what we've been doing. I hadn't seen this doctor before, but trust the clinic and was really impressed by her. We'll go back again.

So PRESCHOOL is great. I can't even express how wonderful it has been for all of us. Cute Ellie is counting every day we have together in the morning. Today was our "8th mommy daughter date." Do you think preschool is blessing more than just Carver? Absolutely. The time just FLIES by. :) He loves to go and comes home so happy, very fulfilled and then he crashes. I'm getting good naps from him every day! But part of that is probably his lingering cold, as well. Either way, it's been great.

What is weird is not knowing what's happening there. I've emailed the teacher a couple times to check in and I'm trying hard not to bug her often. I was really excited to see PT (physical therapy) homework come home today. We need to work with ball skills: bouncing off the wall and catching it, bouncing into a bucket, catching, throwing, the basics really. Too bad the weather is turning nasty. What wall should I find to bounce balls off? Maybe his room. It's not decorated/painted yet. :)

I'd gotten used to the style of speech therapy where all 3 of us (sometimes plus Grace and/or Ellie!) would play and interact together. I knew what to work on, asked my questions, got tips. This is a whole new scenario. But not a bad one, just different. I LOVE, LOVE, LOVE the stuff that comes home with him. A cute spider craft and a mini pumpkin he used a sharpie to color a face on. Or the glove filled with popcorn and candy corn. It's so much fun. Today he got off the bus, absolutely thrilled with a book in his backpack. "cows!!" he kept saying. Sure enough, it was a book about a boy who swallowed a fly (and everything else) and there were cows on several pages. Yesterday he brought home a flyer about a play put on at the junior high, that classic school "junk mail" and I so I recycled it. He was worried about that. So worried that today when he got out his backpack for school, he ran to the recycling bin in the pantry and I knew he was looking for it. I fished it out and he was happy as a clam. Even without many words, I know how much all these details mean to him. He's just like his big sisters! He feels so grown up. And I'm SO grateful for the attention he's getting at school.

And we're back to the yum-yum (pacifier). After a couple of weeks without, I saw him sucking his thumb more and more often til he wouldn't go to sleep without it. I just couldn't let that happen. It wasn't easy to go back, but I'm glad that we did. What it comes down to is Carver's individual needs mattering more than what people think seeing a big 3 year old with a binky. I'm still trying to use other things throughout the day and he definitely does NOT take it to school, so he gets it for his nap at home and usually during his movie time, then bedtime. And really grumpy moments, too.... :) Okay, he has it a lot. But we're working on it.

FAVORITE Carver tricks right now:

he gets up way too early and climbs into bed with me. Rarely he falls asleep, but usually it lets me wake up slowly (which I need) and he doesn't kick much anymore. It's gotten to be something I actually look forward to.

he loves to talk about "empty" - a new concept for him. Great word. His pretend play has exploded. It's very exciting, as well. He mops with his stick horse, eats birthday cake with his stacking cups. I love it!

he calls the girls for dinner or today when they got off the bus, he cupped his hands around his mouth and started calling out "spiders!" because we'd seen one on the way to the bus stop and he wanted to show them.

HARD things right now:

he's figured out doors. He can open ALL of them and it's really a pain. closets have to be Carver-proof now and it's only a matter of time (days?) before he learns to unlock the front door, which is the only way he's staying inside. The garage is bad enough. And the kid is NOT afraid of the dark. He just flips on the light and heads for the van.

hitting and pushing again. sometimes this is for attention, either theirs or mine. Almost always because he's frustrated and not getting what he wants. The time in the corner was working well, but not anymore. I might have to do straight up to his room for a minute. But that's hard to do when Grace is grumpy and I'm making dinner. I just usually scold him and give him that negative attention. Sigh. Parenting is a MILLION times harder to actually do than talk about.

Thursday, October 23, 2008

PRESCHOOL!!!



The big day!! He started preschool yesterday and it went great! He was super excited about the bus ride and wearing his backpack. He saw the bus approach, though, and stuck his thumb right in his mouth (we're really hoping that's not a new trend for him) so he must have been a tiny bit nervous. He climbed on the bus no problem and got all buckled in. Here he's blowing kisses at us:



It's pretty neat, actually. There is a bus driver, obviously, and she had an assistant to help out. There are built in booster seats that fold out of the regular ones so he was buckled in a 5 point harness. He came home happy as a clam, talking about the bus like crazy. He didn't seem worn out or anything, but as the afternoon went on I could tell he was tired. HURRAY!

His preschool teacher called in the afternoon and reported that he'd done great, followed along with the group well and was speaking more than they expected. Good news! His teacher's name is Ms. Maki and she said that he must know her name because when he wanted her, he'd call out "Ma! Ma!" I can totally hear that sound in my head and cringed just a little because it'll get old fast! Maki said that he played kitchen with a couple girls and they were setting the table together. Cute boy! I guess he sucked his thumb a couple times at school, but she said that he was too busy to have it be a problem. That's good news. By the end of the day, however, she could tell he was ready to go home. He was obviously listening for the buses and saying, "home."

Today he woke up REALLY early (6 am I heard dinosaur stomping sounds coming from his room and the light ON!!) and was definitely grumpier. I'm helping in Ellie's class or I'd give him a nap for sure. Too bad.

The bus stop thing is working out great. His bus comes just before it's time to take Lydia to hers. Today was a little tight and I had to send her ahead of us, but made it there in time to kiss her and wave good-bye to her through the window. His returning bus comes at 12ish and we have time to eat lunch quick before taking Ellie to HER bus stop. What could be REALLY crazy is working out great. But 5 bus stops to remember a day?! That's insane. At least Carver's is at our house!

So that's preschool! More on his birthday to come.

Wednesday, October 8, 2008

LAST speech therapy

I'm full of emotions these days because I had to have a good cry after our WONDERFUL speech therapist left for the last time today. Carver's graduated from the SKIP program (birth-3 yrs) and is now ready for our school district's program, a developmental preschool in our case. I've loved doctors in the past and teachers the girls have had, but there is something really profound about someone who loves and helps your child with special needs. It just tugs at my heart strings like nothing else. So here's a big THANK YOU to one really special speech therapist.

She had great tips for our preschool IEP in a week, getting into writing his oral needs and making a plan for sending the chewy tube and probably gum in his backpack. Also she noted an improvement in his drooling and suggested wrist bands for wiping his face himself. I think it's REALLY time I put that on my list for Target. :)

We talked about goals we made back in May at the beginning and it was exciting to reflect on Carver's progress. He's come so far in just 6 months. Those first appointments he spent throwing fits, begging and crying for milk or food all the time, with absolutely no attention span for play. Now he not only associates his ST with play-doh, but sits for a good 20 minutes or so playing with us. AMAZING. And he uses words for what he wants, he waits for the next activity so much better than he used to, understanding that we're doing something now and he waits for something to come later. We still have a lot of work to do (dressing, undressing, potty training, to name a few...) but we've come so far!

The transportation dept at the school district called today and scheduled bus stop times for Carver and it works out perfectly to have him picked up here. I can't believe it fit into my already bus-stop filled day. Hurray for that! We're going to go take a little mini tour of the bus the Monday before he starts to see what it's like. I hope it helps. What an exciting time. Change always makes me emotional, moving, graduating, maybe it's the change of seasons, too. Sometimes I'm amazed I don't cry when I take out or put away the winter clothes! What an exciting, stretching time for Carver and for me, too.

Monday, October 6, 2008

the latest

I'm getting behind! Therapy was last week, she brought "thera-putty" which is basically silly putty in various degrees of softness. It's pretty cool, but Carver's afraid of it because I popped a couple air bubbles in it at first, thinking he'd like it. Guess not! Grace loves it, so does everyone else. I like how it sinks back down smooth when you're done but feels so firm when you play with it.

We worked on a puzzle with him (an animal sound kind from Melissa and Doug) and he wasn't very interested in finishing it. We also built towers with wooden blocks and said, "up, up" with each block added. He wasn't interested in the tower until we made a garage for his car and then he was all about helping add blocks to the top! I guess it's always about finding the angle. :)

And now... drum roll, please..... we took away the pacifier! Saturday morning was the last time. I'd been prepping it on Friday by saying things like "where did your pacifier go? Is it on a boat? Did it go on a train? Is it at it's grandma's house?" silly things like that. I believe that helped get the idea of the pacifier being far away, not just in my pocket or in the kitchen drawer. I really think it's helped. So we didn't do a "fairy" or a trade or a big garbage throwing away moment and, while I'm using only good old fashioned lying as my technique, I think it's saving us trauma. Ellie talked about her "happer" in the garbage truck for MONTHS and never liked the stuffed cat we offered as a trade. what's the point? I've just told him it's gone, we don't have it anymore. That's true. Then we hypothesize about where it could have gone and that's that. Bedtime is tricky. He's requiring a lot of singing and arm rubbing, but that's how it started out when we moved him from his crib. It might take a couple weeks, but he'll adjust. As I type, he's fallen asleep on our bed without the "yum-yum." there is definitely hope! :)

It all started because the preschool teacher called and I asked which she'd rather we work on, the pacifier or the potty training. She said pacifier and I figured now was as good a time as any! We're working on getting the bus stops set up, as well. We meet on the 17th to make an IEP (Individual Education Plan or something along those lines) and his first day is his birthday, Oct. 22nd! Wednesday. Wow. So exciting.

He's a super Mommy's boy right now - pretty tiresome, but sweet at the same time. I love being needed and there are few things cuter than being taken by the hand by Carver to go play, unless of course he's whining and crying and pulling hard. I think that happens most often!

I'm sure proud of him for going cold turkey on the yum-yum. I hope this week is okay for all of us!

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 apraxia-kids.org 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.

RECENT SUCCESSES:
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.

Wednesday, August 27, 2008

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!

Monday, August 25, 2008

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!

Tuesday, August 19, 2008

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!

Wednesday, August 13, 2008

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!

Wednesday, August 6, 2008

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!

Friday, August 1, 2008

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.