Showing posts with label hard days. Show all posts
Showing posts with label hard days. Show all posts

Friday, February 26, 2010

A heaping dose of perspective

Today I took Carver (and his 2 year old sister) to chat with the teacher of a local preschool, run by a Lutheran church in the area. The website, their blog, my emails with the coordinator had all been very impressive. I figured it was worth a shot. I needed to know if I had other options, rather than the developmental preschool he's at.

Fridays are generally hard for the 3 of us. We are all tired and we usually spend the morning at home so I can clean, which makes everyone a little cranky. We headed over there before lunchtime just to add "hungry" to the mix.

It was a typical preschool classroom and she seemed very nice. My emotions have been close to the surface all week, I've been literally losing sleep at night worrying about this. I was perhaps not in the best frame of mind to have this meeting. The kids were trying to ransack the toys while I discussed Carver and heard about their program. Within a few minutes, I realized that this was not going to be an option for him and wanted to get out of there ASAP. I wish now that I would've found a way to do just that. Instead, I chased the kids around the room and cleaned up all the stuff they got out, while trying to concentrate on the sweet preschool teacher voice telling me he seemed like a typical preschooler, excited about a new place. Her words were all kind, but the look in her eyes revealed the feeling of "he's a handful, she's crazy to consider this." But, in all fairness, I was so caught up in my own flood of emotions that this might be totally off. Less than 5 minutes into it, I realized tears were coming. I prayed and prayed that I could hold them off to the drive home. But that was not to be. She had to console me, offer me tissues, for crying out loud. That's when she told me about their routine and program and I really knew this would never work. 18 kids, 2 teachers, circle time, letter tracing, art, all good things. But she reminded him maybe 5 times that the neat little house was just a reading place and not for toys. 3 times she reminded him not to go out the back door. Twice he got himself a drink with a cup without asking. 2 seconds for me to imagine their "sensory table" of water/rice spilled all over the floor if Carver played there. She didn't say no. She said we'd have lots of communication, that we'd need a few weeks as a trial to see how he interacts with the class and that I might need to stay with him, as they'd done before with a special needs boy. Clearly not an option for me and his little sister, not to mention the hurt if it didn't work out and the challenges with that.

I cried more in the car, more at home, more on the phone to my sweet husband, more to my poor neighbor, more at home, while I tried to take a mini-nap with Carver. It's been one of those days.

It was crazy to consider a typical preschool, of course. I should've known that. It's brought to the forefront all my worries about kindergarten. Which I do NOT need right now. It also made me extremely grateful that we have a developmental preschool at all, poor parent-teacher communication and all. And that alone is probably worth all the tears.

Tuesday, February 23, 2010

Help wanted

When Carver’s 2 older sisters were preschool age, I developed a sense of educational self-reliance and belief that teaching is most effective at home. My feelings about preschool are complicated, but the foundation that I always return to is simple: preschool is a helpful social experience that prepares children for a classroom environment. And that’s it. Neither of my girls learned anything in preschool that they didn’t already learn at home. As they progress into elementary school, they gradually begin to be introduced to new concepts and I’m the helper instead of the main teacher. It’s worked for them. It’s worked for me.

So Carver is not fitting this mold at all. I flounder to provide all the sensory input he’d like (which is roughly as much as is humanly possible to dish out) and he isn’t hungry at ALL for preschool “curriculum,” unlike his sisters who soaked it all up. Counting, letters and shapes have come and gone with his interest level. It is incredibly discouraging to see those regressions. And baffling, too.

I have the same motherly desire to do it all, be Carver’s primary teacher and therapist. At the same time, I feel so hopelessly ill-equipped for that role. It is a sticky place to be. I know that raising and teaching a child with special needs requires a team of specialists, with me to hold all the pieces together. Where do you find all the help necessary? That is the hardest part.

We found a fabulous speech therapist who has helped Carver tremendously. I’m impressed with how she pushes him each week, building on what he can do and stretching him just enough. I hear more articles, more complete sentences and more articulation all the time. He works SO hard for her! And when I try to get him to practice at home, I get “No, no, no – Jennifer’s office.” That is clearly the place he associates with that level of effort! And it is SO MUCH WORK for him. You can’t imagine how he watches my mouth, labors with his own to try to make the same sounds that come out so naturally for the rest of us. He just has to work for every sound.

Carver’s preschool is a disappointment. Last year he THRIVED. He came home happy and it was clear that he was learning routines and academics with adults who connected with him. It’s not happening this year. I don’t know what happened. All new teachers came in and it’s just not the same. In all fairness, we do have a few excellent therapists and assistants there. And I believe that everyone is trying hard. But it’s a government funded program, required by law to provide a minimum level of “services” and I feel like we get the minimum services required and nothing more. But what are my other choices? VERY expensive preschools with waiting lists in other cities. What’s a mom to do? I come back to my foundational belief that preschool is just a great social training opportunity… and yet somehow that’s not matching up with Carver’s needs. I have to admit that I need help teaching him colors and letters and all that good stuff. Either I need to find new team members to help me in his education (but WHERE?!) or I’m left to prepare him on my own for kindergarten. And that last option feels like a huge burden indeed.

Monday, December 7, 2009

Wake-up call

Lately, I've faced a lot of reality. I exchanged emails with Carver's preschool teacher and SLP -a speech language pathologist, formerly known as a "speech therapist." :) It turns out Carver's not speaking much at school. I had figured that his IEPs and progress reports reflected his ability to perform in structured, formal testing situations and didn't worry too much about the low age equivalencies given. But I wanted to be sure. I was really surprised to find out that he's NOT talking at school. Strings of 3 words at BEST. Mostly single-word utterances. WHAT?! He's talking volumes at home. Granted, articulation is a major hurdle. But he's not letting that stop him. He speaks in paragraphs at home, disjointed sentences strung together with semi-colons or ellipses. So this is a major discrepancy. And it has me concerned for MANY reasons:

1. How can speech therapy be effective at school if he's not talking?

2. Why isn't he comfortable enough at school to talk? He used to talk up a storm at school - last year, different classroom, different teacher and therapist. What's happened?

3. I can't count on the school system. I've been coasting and it's time to get back in the driver's seat.

4. The clock is ticking and we're just under 2 years away from kindergarten. I'm kicking myself for wasting so much time.

SO... I'm diving into the search for a private speech therapist. I'd been on a waiting list and didn't know what else to do. Now we've been accepted to the local therapy center, but I'm not just taking whoever I get. Next Monday we meet with the first recommendation from my pediatrician. (HELLO?! Why didn't I ask him sooner? He's fabulous and knows an awful lot more than I realize.) I'm willing to drive about 30 minutes for therapy, the local place is 15 minutes. I'm hoping we're looking at every week. I've resisted the cost ($25 co-pay each visit), but how can I NOT do it?

But more importantly, it's good for me to have these moments where I get myself back on track at being Carver's #1 advocate. It's exhausting to worry all the time about him, to be constantly teaching and coaching him. I have 3 other kids, laundry, dishes, meals, church responsibilities, a husband and so many more parts to my life. It's a sticky balance between feeling guilty that I'm NOT doing more for Carver and letting myself relax to the point that I'm not doing much at all.

Whew. Add to all that the fact that I keep looking at my sweet 4 year old and wondering when he'll use the toilet and I want to throw in the towel completely!

Tuesday, May 26, 2009

Oh, dear

Tonight Derek came home and as I hugged him, noticed a funny smell. "Have you been painting your nails on the way home from work?" I teased. Then it clicked - it was coming from upstairs. DANG IT!!! I ran up to the computer desk where I remembered instantly I'd left my tightly shut Nail Envy.

Serves me right for not putting back in the bathroom cupboard, but Carver opened it up and let it leak on the carpet, drip on the computer keyboard in a few places (the "zx" is what you get if you press Z and the TAB feels a little weird, too) and he must have wiped some on his hair because there is a VERY crusty streak over his ear. Someday, someday, SOMEDAY he's going to stop doing stuff like this and I'll look back and think it's funny, right?

Wednesday, May 13, 2009

Today I overheard one mom tell another mom about the difficult girl on her daughter's softball team - a group of 3rd graders. She described the way she never paid attention to the game, how she wrote in the dirt, made mud and played in it, couldn't follow directions. She head butted other girls when they were in their batting helmets, etc... Her main complaint was that it was an annoyance to the team, she couldn't believe that this girl's mom didn't intervene. From her perspective, the mom didn't seem to notice a bit. She commented that she must be a "nightmare" in the classroom. She said, with a mixed degree of relief and smugness, that next year the team is based on skill and she's sure THAT girl won't be moving up.

I kept quiet. I didn't know what to say. But inside, I had plenty of things to say to myself.

First of all, this girl needs help. I hope that her mother really isn't as oblivious as observed. Those behaviors are obviously NOT typical of 3rd graders. Life is going to keep getting more difficult, I am a huge believer in early intervention. I hurt for her, thinking of the many who watch her on the field and don't understand. I hurt for the mother they blame.

I've considered the dilemma of group sports for these very reasons. Swimming would be incredibly therapeutic for Carver, but a group lesson situation would be... um, difficult. He'd have a hard time following directions, need more attention than other kids and their parents would be resentful. How would I feel in a similar situation? Like I'd paid a lot for a class and expected to have equal attention from a teacher. Private lessons would be ideal, but terribly expensive and out of the question for us right now. Soccer? He'd love a turn to play, but again the interactions would be stressful to him, it would be so hard. But on the other hand, when he's ready, a team experience would be wonderful for him, physical activity tremendously helpful.

I realize not everyone has first hand experience with developmental delays and disabilities. They don't understand the balance between concern for everyone else's convenience and our children's need for integration and experience. I get that. I am incredibly grateful that my girls will have understanding of disabilities and, hopefully, grow up with compassion for others around them. It's certainly difficult to have Carver as a brother and they aren't usually saintly about it. But I hope that as they mature, what'll stay with them is that they love him anyway and that they are willing to be on his team and anyone else's who needs a cheering section.

Thursday, April 9, 2009

routines, separation anxiety

Doesn't Carver look handsome in his hand-me-down sports coat? I LOVE it. He loves it, too - especially sticking his hands in those pockets.

This week is spring break and I've done really well planning activities in the morning so we don't all go crazy at home together. Carver's done really well because I've maintained our afternoon routine almost completely. Lunch, then a little quiet play and playing in beans/rice, make a nest on mom's bed for a couple books (usually Curious George Makes Pancakes then the pop-up truck book, but right now he's fixated on Winnie-the-Pooh "tight squeeze" and we're reading it twice in a row), a nap, then a movie with fruit snacks, a snack, playtime with the girls and have to kinda wing it til dinner. Every minute can't be planned, unfortunately. So we've been successful at spring break. I have a glimmer of hope for the summer. Maybe we'll go outside at the same time every day or something, take a walk or go to a park. We'll get creative, but I think we might survive 2 whole months without preschool. Sigh. That sounds hard!

Onto the mystery of the week. I had to run errands with ALL 4 of my monkeys. It was a little... hmmm... crazy? Definitely. Whiny? That, too. One stop included returning a clear sterilite tote I'd bought at Wal-mart the week before. I'd picked up 4 at once and hadn't noticed a huge hole in the corner of one. So back it had to go. Carver FREAKED out. I completely traumatized him with the transaction. There was a long line (go figure) and so we got to cry about it the whole time we waited for our turn. I'm not sure if telling him ahead of time is a good idea, but he does best with time to get used to things - especially where we're going and what we're doing. Why didn't he understand that it was broken and we didn't want it? He understands the concept of broken. Why was this so heart-breaking?

Then today I returned sandals and a shirt I picked out for Derek at Costco. He didn't like them, so back they went. Carver was super worried about that at home, but cried only off and on. And we walked right up to the counter and he wanted to hand them to the cashier, which he did. (And incidentally, he was telling him "sandals, sandals" and the guy was so not kid-friendly. He ignored him and obviously figured something was "wrong" with Carver. He didn't win many points with me.) Then the freak out began. In fact, I talked to Carver the whole transaction about it and everyone is staring at a preschooler crying inconsolably about returning adult sandals. Is there something I'm missing? This is the sort of experience that makes me wonder again about cognitive delays. It's like something hasn't clicked in his brain, that there is a switch that needs to be flipped so he understands about separation and that we don't form attachment to plastic totes and sandals.

Along the same lines, Carver's finally gotten better about not wailing and crying everytime someone goes to the bathroom. Seriously, he used to fully lose it every single time someone shut the door at our house or at someone else's. Kids, grown-ups, people he loves, people he hardly knows. Now he only does that sometimes. Okay, maybe half the time. But still, that's better. And he doesn't cry and cry when Derek leaves for work. He totally gets that routine now. It's always right after breakfast, it's a very structured part of our day. But I guess you just never know when someone is going to need to use the restroom, not much I can do about that!!

Monday, February 9, 2009

the smell of drool and other mountains to climb

I realized the other day that I'd been rather subconsciously waiting for SOMETHING to blog about here. And then I remembered that the main point of this blog was to record thoughts and feelings and ideas relating to Carver - everything I don't want to forget. I'm committing to be better at that!

Right now what's on my mind is social interaction. Carver started primary at our church and attends a class for 3 year olds, "sunbeams." The first hour they sit on chairs with lots of other kids, sing songs, listen to a lesson. The next hour is in a little classroom with only his class. This is a HUGE change from the "nursery" he attended before, a 2 hour block with toys and books and snacks. The transition hasn't been easy for us. He wasn't excited to leave nursery, but he likes being with his big sister for the first part, sharing time. And he has lots of friends in his class. His dad sits with him during sharing time and helps him stay on his chair, not run around the classroom, etc... I think the first or second week, he zipped right up the aisle to try and touch the pretend birthday cake on the table in the front of the room. :) Week by week, he's more excited about sunbeams and he likes that Daddy comes with him. He's adjusting.

It's actually much harder for me because I feel like he's outgrowing life as a toddler. He's expected to do more preschooler type activities and his peers are noticing his differences more and more. I've had kids say that he smells bad - either his breath or they say he needs his diaper changed. Now, I'm not losing sleep over what other 3 year olds think - BUT it clues me into what's coming ahead. And honestly, drool smells bad. His shirts sometimes do smell like that. I try and try to get them clean, but we just can't help it. And his peers are all into who's potty-trained and who's not. That's a very normal issue and Carver could care less what the other kids are doing. But someday, some of that is going to sink in.

Last week we went to the park after the bus stop and there were lots of kids from the neighborhood there. Not any truly big kids, everyone was under 10 or so. Carver had the HARDEST time. He couldn't run around and have his space to play on his own, kids kept banging on the metal slide and scaring him (not on purpose) and it was just too much for him. He cried and cried. Sometimes he stopped dead in his tracks and cried. At one point, he came sobbing to me and put his face hard on my shoulder, while I held him and hurt for how frustrated he must be. One of the neighborhood moms asked how old he was. I knew what the underlying question was and told her he was 3, but he has some speech and sensory integration issues. I got an "oh" and then she didn't know what to say, although I could tell it confirmed her suspicions. I don't blame her at all - it's the right kind of question if you want to know what's up with a kid that's not acting his age. But the whole experience left me feeling exhausted and discouraged.

Looking through a different angle, I've seen Carver grow more and more capable of helping around the house. He cleans up his toys better - he especially loves to help rescue all his bath toys as the water goes down the drain. He washes the dishes a little when he plays in the bubbles. The other day he came off the bus holding his little baggie of gum and a chewy tube that he takes to school. He told me, "homework!" He wants to be just like his sisters. That same day when THEY came home, he went running for his backpack to find homework to do with them. I picked up a new alphabet coloring book for him at the store so he has his own homework book. The funny part is that he has very little patience for coloring and table work like that. But the desire to be included is real.

Carver is learning letters - M, O, S, are his best ones. He knows some of the sounds to those and K and T and P. Thanks to the "Letter Factory" for hours and hours of repetition. :) I've been working on counting and wondered if we'd EVER get past 2. Really, he still uses 2 words together MOST often so that makes sense. We've occasionally heard him say "3" and the other day at the park, a QUIET day before the kids came home from school, I was pushing him on the swing and counting each push. He not only said the numbers with me but anticipated a couple of them! WOW! I figured that the movement of the swing was regulating to him, enough to help him get those words out in the right order. It was very cool.

Carver's preschool class has grown and split! He is in with a new teacher, who I've met and really liked. He doesn't mind at all. He's with a friend, Jordan, a little girl that his old teacher told me about. She said that they run around together and are such cute little buddies - pulling on each other's arms to go play. When she first emailed me, she said to ask him about her. I did and his face really did light right up! He said, "snap, snap" like an alligator and I think he was trying to tell me what they played together. I'm so grateful for preschool!

AND Carver has been really growing in his friendship with his little sister, Grace. They play in the bathtub together and get into mischief, too, these days. A couple nights ago after the school science fair, we came in and Grace was super tired and cranky. She sat and cried by the door while I looked for a pacifier. Carver took the one out of his mouth and popped it in hers to calm her down. I LOVE that. He is such a sweet boy!

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.

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!