I don’t know how it’s possible but it is, once again, time for Caleb’s 3 year re-determination for special education.
For anyone who’s not familiar with the process, every 3 years a child with an IEP needs to be completely re-evaluated by the school district to determine if they still qualify for special education services. I wish there was room for doubt here for Caleb but we all know that’s not the case. As amazing as his progress has been, he’s still not at the level of a typical 9 year old. He will still qualify.
After all the fights we have had with various employees of this district, I’m still suffering from PTSD. When I see an envelope from OSE (Office of Special Education) my heart starts racing and my hands will shake. How ridiculous is that?? I read every line and completely obsess over it. The line item that ALWAYS makes me sweat is the school psychologist’s line. I’ve learned from past experience that they write these things in a very vague manner to give themselves maximum flexibility. Maximum flexibility does not work for me, I need specifics.
I feel like we have a good working relationship with Caleb’s teacher so I always hate to ask questions that might make her feel defensive. I know she isn’t all of those other people. I know this school isn’t those other schools. I still need the reassurance though.
Today I brought up the subject of the tests the psychologist will use. She wasn’t sure what tools would be used to evaluate him but she reassured me that she would be present throughout. I looked nervously at Eric and just went for it…”We don’t sign off on IQ tests…” To which she replied…
“What is this 1950? We don’t use those.”
Uh, what? Really? Because we’ve had two school psychologists in this district who were pretty darned fixated on IQ.
I must have looked confused because she added, “Whatever she uses, I’m pretty sure it will come back non-testable because he doesn’t know her. I’ll be there to make it as easy as possible and I might be able to ask the questions since I’m the familiar test giver, he has accommodations for that. What is really important is what the team members say, we all know him, we know where he’s at. We work with him every day.”
She offered to find out what tests would be used but it was my turn to reassure her, “You know what you’re doing, we’re good.”
It’s still going to suck…we still need to hear all the things he isn’t doing…but at least we don’t have to sit through that, getting beaten down emotionally, only to have to fight every step of the way through the rest of the process on top of it.
As we walked to the truck Eric shared something he’d forgotten to tell me yesterday…Caleb’s teacher is going to speak to the general education teacher to find ways to increase his inclusion time. Again. We are so far beyond “lunch, recess and specials” already that this will just put those bad memories completely in the dust.
I think maybe it’s past time to let myself truly trust his team again.
When I go on and on about the changes we’ve seen in Caleb since starting the STX 209…this is a perfect illustration of what I’m talking about.
Yesterday, after a long day of school and work, we got home. We followed our normal (read: insane) getting home routine which involves everyone getting upstairs, getting jackets and shoes off, getting Tucker out so he doesn’t make a mess in the house, getting naked (Caleb only) or changed into pajamas (Money only, Daddy doesn’t play along.) It’s a big flurry of activity with Caleb yelling out commands for us as he works through the steps.
This is all routine…habit…after almost 9 years he has got this down. But yesterday when we got home I could tell by Tucker’s bark that he needed to go out NOW, so I raced straight to the back of the house dropping my purse and coat along the way. I made it by the skin of my teeth and when I got back upstairs I was a little short of breath. And perhaps a little hormonal ((TMI, I know.)). So I wasn’t at my most accommodating.
About the 47th time Monkey asked me to hang up his coat because he can’t reach (and we still haven’t put up a hook so he can) I might have snapped a little. I might have looked at him steadily (he is making AWESOME eye contact these days) and said very quietly (in that Mommy-is-this-close-to-losing-her-mind quiet voice)…”Caleb. Mommy is busy. Hang.it.up.yourself.”
He spun away from me and retreated toward the front of the house, he’s a very, very smart boy. I took a couple deep breaths, counted on my fingers and in an “A-HA!” moment realized I wasn’t a little hormonal…I was A LOT hormonal. OK then. I took a few more deep breaths and as I was getting back to normal I heard him return.
“I did it! I did it! Well done!” he exclaimed, half crying and signing ALL DONE with a nice exaggerated movements. This did not make my Mommy heart jump for joy, oh no, this made it sink to my toes. This was the kind of self praise he does when he knows he’s done something he shouldn’t have done. It’s a confession and a not so subtle attempt to tell us what he wants us to say when we see what he has done and an apology for how unhelpful it turned out.
This is the “I picked up dog poop with my bare hands but the floor clean!” self-praise. The “I put dirty dishes in the dishwasher when it was full of clean dishes” self-praise. The “You might want to get a picture of this for Facebook” self-praise. Oy.
I set off, trying to figure out what he could possibly have gotten into in 45 seconds. The dogs were still out, he hadn’t been in the bathroom…or the kitchen. Where was his jacket?? I looked around the living room, doubled back and checked the dining room, glanced at the kitchen and dismissed the idea…he wouldn’t throw away his coat…
“Caleb, where is your coat?
“I did it! Well done!”
Shit.
He walked around me and out into the hall and came back carrying his stool…the one from the bathroom. I hadn’t even seen him go in the bathroom. He went and put it away while I walked over to the front hall. I looked, expecting at best to find something like…oh…this.
BTW, in case you are wondering, that isn’t my size…
But there was nothing, and his little orange coat kind of stands out. I began to turn to go back into the living room and glanced in the closet and was totally and utterly floored by this…
Do you SEE what he did there? He hung up his coat. He couldn’t reach so he grabbed a stool from the other side of the house. He couldn’t get the jacket to stay on a hanger so he took a hanger down (the one with the inner liner of his coat already on it), looped the jacket over it and hung it back up. Then he put his stool away.
All because I told him to hang up his jacket himself. No prompting of steps, this isn’t something we’ve ever practiced. He just DID it…all by himself. He problem solved and DID it.
THIS is what I’m talking about…this is what this medication has given to him and to our family.
Yesterday, I put my fragile X carrier anxiety on full display for you ((I hope it was more fun for you than it was for me!)) and once again I’m reminded why my life has been 100,000,000,000 times better since I’ve become involved in the fragile X community. If you didn’t read the comments, you should go back and do that.
To sum up…this was about my fear, not Caleb’s. I should prepare him in advance with a social story (a handy copy of one to modify was e-mailed to me even), I should invite some of his friends, I should not let this hold me back, I have to keep trying, someone volunteered to go with us and I was reminded that even a small victory is still a victory.
Oh, also, I was provided with my newest favorite mantra…
“Turn your fear into fierce! <3“
How awesome is that?? Thanks Angie!
This is exactly why so many of us refer to the fragile X community as “the coolest club no one wants to join” or comments that if it had to be something, that we are lucky it was fragile X. I cannot think of any community that is as close and as supportive as this one.
I love you all! Thank you, thank you, thank you!
We’re totally going for it. I do have to say I’m pretty shocked though that no one suggested alcohol or Xanax for me beforehand 😉
I’ve been having an argument with myself for several weeks. The circus is back in town and Caleb wants to go. He asks to go to the circus several times a week and I keep telling him, “Not today.”
He no longer remembers his first trip to the circus, how could he…just look at him!
He wasn’t quite 3. We knew he had fragile X but I don’t think it had fully set in what this would mean for him…for us. We still thought we could make a decision to go to the circus, sit through the show with friends and their little girl, and then go home with an overpriced light saber or inflatable animal on a stick.
Caleb didn’t make it through the door before the tears began falling. I think the first notes of the introductory song were played before we ran. Maybe not. He was crying and miserable. We were miserable and shocked. We stood outside for 45 minutes in the cold hoping to get him back in the tent, then we left for home feeling bruised and raw. Never again, we agreed.
Now, six years, later we have a little boy who thinks a circus looks like fun! He even went to one happily last year with his class. Why on earth would we not take him this time? Because last year his class scored tickets to the single sensory friendly circus performance in the 6 week run…this year they did not request them early enough.
This year there will be no Circus of the Senses, this year it’s full on performance or nothing. Eric and I were pretty firmly on the side of “nothing” but I’m wavering. Yes, it’s a lot of money…to sit on an aisle, near an exit, away from the band will cost us $100/ticket. If you have kids with fragile X or autism you know that these aren’t “wish list” items but requirements. Yes, it might be a total failure, we might not even make it through the door at all this time. But he wants to go and I hate saying no to him if I can say yes. Not because he’s spoiled (though you may have a valid argument for that) but because he doesn’t ask for much…and because I never want to be the one standing in his way.
But this is still a no…that he wants to go is enough to make me feel like an ass for saying no but it’s not enough to erase that memory of the red faced, crying child who was arching his back in a frantic effort to escape while Eric and I held him tightly. I keep telling myself that he doesn’t really know what he is asking for, it’s not the quiet, lights up version with all of his best buds.
As logical as that may be, it doesn’t stop my heart from breaking every time he looks at me smiling and says hopefully, “Circus?”
As much as I love reading, I’ve always been pretty *meh* when it comes to poetry. There are a few I love but mostly…well…I’ve really only read poetry when it has been assigned for school…well except for that “Welcome to Holland” poem which was assigned by my genes. (Srsly, it’s required reading for “Welcome to Special Needs Parenting 101” I hated that class.)
One of Caleb’s classmates has changed my opinion of poetry forever…he wrote an ode, which was shared with me yesterday.
Caleb
Oh Caleb, I feel gratitude for your friendship.
Oh Caleb, I like to play beanbags with you.
Oh Caleb, I like to make you laugh.
Caleb, when you are happy, I am happy.
Feesh!! Feeesh!!
I will never again doubt the power of poetry, this poem brings me to joyous tears every time I read it.
The young man who wrote it isn’t one of the kids who Caleb was drawn to immediately. This is a friendship that has developed slowly, day by day, but you cannot deny that it is friendship in it’s purest sense. It is a friendship based on this young boy’s generosity of spirit.
When I wrote the post “For the parents of typical kids” this is precisely what I meant when I talked about what typical children gain from being in class with children like my son
“They will learn to be a true friend to someone. They will have a chance to learn that different isn’t bad, that different can be pretty freaking fun, actually…In short, they will learn to be awesome.”
I’m not sure that “awesome” is a big enough word to describe this…I’m not sure there is a word big enough to describe it at all, in fact.
A few people were having trouble reading the article I linked to yesterday, attached is a .pdf version that will hopefully work for those of you who couldn’t read it online.
Thanks to Kathleen Quinn my blog about Caleb’s improvement on the STX 209 trial caught the attention of the editor at baystateparent…and she decided to publish it!
It’s a little different than the original post, apparently their entire readership hasn’t been hanging on my every word over the years and thus needed some background information. Whatevs.
Yesterday, Caleb grabbed a store flyer as we left the drugstore. When we got to the truck he very clearly asked for Fruit Loops, “little ones.” Today we went to the grocery store to buy him some because he’s been very persistent. He has also been a very reluctant eater in the mornings so when he agreed to eat them for “breffest,” it seemed like a good idea.
At the store he lead me away from where Eric was looking at produce toward the middle of the store. I thought he might be able to find the cereal aisle though this wasn’t our normal grocery store…the layouts are all pretty similar…and he did a great job! He started only 1 aisle over and quickly found what he was looking for. I thought he would want one of those single serving bowls of Fruit Loops and they were on sale 10 for $10, cool! But my little Monkey had other ideas…he went old school..he went for a variety pack of the single boxes.
He carried the cereal until we checked out and he only asked me to open it eighty billion times…you know, just your average perseveration. I thought he would tear right into the box as soon as it was unwrapped but, to my surprise, he just wanted to hold one. After a few minutes he realized that there was a second box of Fruit Loops in the variety pack and he pulled that one out, tapped me on the shoulder and said, “Sweetheart, here you go.” Awww! This is exactly why I will buy him anything he wants!
Anyway, we drove home and he chatted happily to me the entire way. We talked about Toucan Sam, “izza burdy!” We talked about the fact the it was not going to snow enough for the “snowbowler.” We talked about “chilren’s hopspital.” And we talked a little more about “breffest” he assured me he was “so hongry.” Any time Eric dared to attempt to distract me he would lean forward, tap me politely on the shoulder and call me either Sweetheart or Honey. Anyone want to guess who won the battle there? If only he weren’t so dang cute, Eric might have stood a chance.
When we got home I found myself juggling my stuff and Caleb’s stuff while E loaded himself down with groceries. Monkey very helpfully carried one of the boxes of Fruit Loops upstairs. Such a good helper. I made a tactical error here by asking him if he could help me, he chose no and marched off…note to self, don’t ask…tell! By the time we staggered up the stairs Caleb’s shoes were in the closet, his jacket was in the hall and everything he’d been wearing had disappeared. He sat down at his computer with his little box of Fruit Loops and turned on You Tube.
I had been expecting a battle over the cereal, it was nearly dinner time so he was not going to be allowed to snack, but it was a non-issue. He just sat and watched videos while periodically adjusting the box’s location. He joined us for dinner with no problems and ate his standard single noodle before announcing he was, “all done.” Nowwwww, I thought, here comes the fight! He didn’t eat his dinner, he was not going to be allowed to snack. But, again, it was a non-issue. After begging us for Fruit Loops for 24 hours he was content to just hold them. Sometimes he’s a little odd.
You might be wondering why there is a picture of Apple Jacks here since I’ve been going on and on and on about Fruit Loops. There is a perfectly reasonable explanation…Caleb took the Fruit Loops to bed with him and tucked them in right next to CEO and the pink penguin…he tucked the Apple Jacks in my bed.
Did I say he’s a little odd? That was, perhaps, an understatement…
I want to talk a bit about inclusion or integration. A lot of people throw those words around and, based on conversations I and other friends have had,
I think a lot of it is a generational thing. When I was younger, this concept simply did not exist. If you needed extra help you were pulled out of the regular classroom, if you were functioning high enough to be in there in the first place, or you were kept apart from your peers, unless you were fortunate enough to be allowed to share lunch, recess, gym, art or library with them. We had had it drilled into our heads that you do NOT stare or point or ask uncomfortable questions, right? Though some surely did miss those lessons, most of the kids I knew had the basic manners. The result of this is that kids with special needs became “other.” They were not in our space, we weren’t given the time together needed to understand them or befriend them and we weren’t allowed to ask about them, it wasn’t polite.
When you aren’t allowed to know who or why…when all you see is this alien being who is so very different from you (hey, come on, how could we KNOW they weren’t? No one ever told us!)…it’s easy to be uncomfortable or scared and you know what fear breeds? Disrespect and bullying. At best these kids were ignored, at worst…well…if you think about it hard enough you can remember what the worst was for them.
If these are your memories of kids with special needs then it’s not surprising to me that you are scared or fearful or angry about integrated classrooms. If these are your memories of kids with special needs then I can understand why you might think that our kids…my kid…doesn’t belong in the classroom with your child. If these are your memories of kids with special needs, as they were mine not so long ago, I can understand why you grumble about the dollars going into special education.
I understand it but I also know better now. I have learned that if that is what you think, you’re wrong. I’m a pretty tolerant person, I can usually see both sides of an argument. I have friends who run the gamut from gay marriage loving liberal hippies to nut job doomsday preppers ((OK, this is a joke peeps…they aren’t all nut jobs I have learned. I even LIKE a bunch of them. Amaze!)) But this “argument” isn’t an argument. If you don’t believe that kids with disabilities belong in our classrooms then you are wrong. Wrong, wrong, wrong, wrong, wrong. Clear? You are wrong.
I’m even willing to explain to you why you are wrong, I’m that much of a giver.
My child belongs in class with yours. My child needs more help, true, but he still belongs. My child has much to learn from yours and your child has much more to learn from mine.
The things my child will learn in that classroom will set him up to be a member of our community when he’s older. He has learned social skills, sharing, perseverance. He has learned how to sit at a desk and work. He has learned how to tell jokes. He has learned to eat with a fork. Jeeze, he was practically potty trained by preschool friends. These are all SO valuable to him, they mean the difference between a life “apart from community” and a life “as part of a community.”
The things that your child will learn in that classroom will not only further his or her education but will make your child a better person. They will have a chance to be both a student and a teacher. They will learn how to break down tasks and help others understand them. They will learn to be a true friend to someone. They will have a chance to learn that different isn’t bad, that different can be pretty freaking fun, actually. They will have a chance to learn that others struggle, sometimes way more than they do. They will have a chance to learn that if something is hard you keep working at it…maybe even for years. They will learn that if you don’t quit, you will achieve your goals. Oh, yeah, they’ll also learn all the other things they would learn even if they weren’t in an integrated class…they still learn the exact same curriculum!
In short, they will learn to be awesome.
Don’t believe me? Let me give an example…Caleb has been ever so slightly obsessed with the Chicken Man the last couple of weeks. Do you know the Chicken Man? He just loves the Chicken Man! SO…he’s been going to school and talking to his friends about the Chicken Man. A lot.
You might think this would be distracting to the other kids, that it might annoy them. You would be wrong. Because they spend so much time with Caleb, he isn’t distracting he’s just Caleb. He’s a funny kid who makes them laugh. He’s just another kid. He’s not alien or weird to them. He’s not distracting…not any more than any of the other typical 8 year old kids in the class at least!
So, great…he’s not taking away from their educational experience but still…what does he add? How about love and compassion and friendship? How about a chance to practice kindness, share a joke or do something nice for someone else? That’s not nothing. In fact, I would guess he’s giving your kids lessons that will make you proud to be their parent. For instance, this kid…he’s part of Caleb’s core group of friends. He’s just your typical 8 year old boy. During art class Caleb was talking to Nate about Chicken Man so Nate did this…
He drew Caleb a Chicken Man. He was in art, he needed to draw and he took the opportunity to make a kid…MY kid…smile. Tell me that wouldn’t make you glow to hear about your own child?
So what did Caleb get out of it? Why wasn’t sitting there watching Nate draw, rather than draw something of his own, not a waste of his time? Contrary to how it might be sounding, I do not send Caleb to school simply to make friends. I just happen to know that the ability to make friends will play a major roll in determining how happy he will be for the rest of his life. I do expect Caleb to learn skills he needs to graduate from high school, go to college and get a job. So what was it, beyond kindness that he got? This child who can barely write his own name, and would rather not do even that if he can escape it, did this…on his own, unprompted…just copying his friend…
He wrote Chicken Man…no, it’s not perfect…but it’s pretty freaking awesome….and something to build on.
