Wednesday, November 30, 2011

is that my kid?

I've written here briefly before that something magical happened this summer. My son matured, as much as a six year old who is developmentally four years old can mature, over a few months. He demanded independence, he played alongside or even with his peers, and the length of his sentences became longer. And then in the early fall the decision was made to add Abilify along with his Ritalin to help with aggression and ADHD.

It's been about two months since we started the medication and the only negative side effect so far is that I need to have a small meal ready for him at 3:00pm or he breaks down. The medication alone didn't make the difference. It's the combination of the medication, the summer program with typically developing children, the new teacher and other support staff at school who understand his needs, and encouraging the new surge of independence. Oh, and his mom isn't half bad either.  The iPad helps, too. This is the list of noteable accomplishments:

1. He wakes up in the morning and snuggles in bed with me for 30 minutes (with his iPad) every morning before demanding we get up and eat breakfast. No stomping. No running. No shouting. It's very peaceful.

2. He brings home papers every night that aren't shredded. He's written his name on the top, colored the picture, and kept it in one piece.

3. He walks down the hall at school or down the aisle at the grocery store all by himself. Sometimes at the store he still wanders off, but he listens when I yell, "Stay with mom or time out!"

4. He brings home papers in one piece.

5. When he goes to the integrated kindergarten room for Science and Social Studies, he offers answers to the teacher's questions. Like, she asks the class and he raises his hand to answer. And his answer makes sense.

6. Do you notice a lack of poop stories? That last one may have been the final hurrah. He goes all by himself, y'all.

7. He doesn't sit on his friends anymore, but he does still sometimes kiss them I think. And he hugs his best friend every morning. It's the cutest thing I've ever seen. Actually, in general, even though he's struggling with sharing his teachers with a new classmate, he's getting along very well with all of his classmates. He's just a little jealous right now.

8. At his last IEP, they said he no longer needs a behavior plan.

9. He plays pretend. He still won't use his Little People in the Little People Bus or House, he'd rather use cars or straws, but he uses them like they are people. It's less self-stim and more actual imaginative play.

10.  He is using his words more and more to express his frustrations, his wants, and his concern for others. I was fake crying the other day (it's a long story) and he came over and patted my arm, "No cry. Is okay. Give me a hug." And today when I came home after his respite time he said enthusiastically, "Hi, Mom! Is good a see you! How your day?" And if my heart wasn't already melting, he showed me his artwork from school that was still in ONE PIECE!

Saturday, November 26, 2011

i get more tape?

This is how we amuse ourselves during the final hour of Thanksgiving preparations, the hour where you're just waiting for the little timer on the turkey to pop and the sweet potatoes to bubble. Some people might watch football. Some people might read a book. Some people might share memories of the past year. We break out the masking tape.

In fairness, though, we did share what we were thankful for this year once we sat around the table, and I must say that my little Turkey tops my list.

Tuesday, November 22, 2011

erika: mother, aide, rainbow-maker

(This is a post I wrote for the collective blog Pre-K and K Sharing. Check it out sometime -- there's some cool people writing there!)

When I admit, out loud, that I not only have a child with a significant disability but that I also choose to work with 3, 4 and 5 year old children in a special education classroom, it even gives me pause from time to time. I wonder if the person I am speaking to is thinking, "Does this woman enjoy pain? Does she milk rainbows out of her frustration? Who gives her those really good happy pills? How does that work for her, exactly?"

Sometimes it doesn't work very well at all. Sometimes I feel very overwhelmed by sensory needs, impulsive behaviors, unintelligible speech, and hearing my own voice repeat the same phrase twenty five times in two minutes. Mostly, though, it has been a blessing I never expected. I never meant to work as a ParaEducator for long; it was a job I applied for right out of college when I was pregnant with my son. But after seven years I have to admit I feel strongly that the education field is exactly where I belong.

My son has fragile x syndrome, an inherited condition that causes mental impairment, ADHD, autism, and sensory processing disorder. Having a child with a disability has given me the perspective I need to work with children who have challenges and communicate with their parents.

We've all had that child who frustrates us, who makes us think we cannot possibly make a positive difference in their behavior. Sometimes the child needs a picture schedule to help ease anxiety, sometimes the child responds well to a behavior chart or other tangible positive reinforcements, and other times just the structure and consistency of school is enough to extinguish negative behavior patterns. And sometimes none of that works and we find ourselves crouched in the corner pulling our hair out.

It's important to remember, though, that you aren't the only one who is having a bad day. That child is struggling, too, and their parents are probably having a lot of hair-pulling nights at home. As the parent of a child who often gave his preschool teachers a run for their money, I'd like to give some thoughts about communicating with parents of disruptive children.

Don't say, "Johnny had a bad day." This tells me nothing. Instead try, "Johnny struggled with controlling his body. He touched his friends without asking and often got up from his seat during carpet time. I had to ask him several times to complete the same task." Now I can talk to my son about keeping his hands to himself, tell his doctor about his difficulty remaining on task (if it continues to be an issue), and I never heard the words "bad," "problem," or "naughty." And please remember that there is always a reason for disruptive behavior, even if we don't see it.

Tell us something good. I don't care if the best part of my son's day was that he loved the chicken nuggets at lunch, I want to hear it. In our program, we call it "sandwiching." We talk about something we're learning in the classroom, talk about a problem we're having or a difficult part of the day, and then say something positive. Here's an example: "We're working on the letter Rr this week. We made tissue paper rainbows. Johnny enjoyed making his, although he was upset when we had to clean up and threw the materials. He loved the chicken nuggets for lunch and did a great job using his words to ask for more."

Sometimes parents are the experts. Especially when you're working with a child who has a syndrome, you may find that the parents have extensive knowledge of the condition. Take advantage of all the work they've done! Ask for copies of articles they've read and for notes from the conferences they've attended. We want to help. We really, really want to help.

Mostly importantly, though, remember to laugh in the funny moments, like when a boy is hiding a rind of ham in his pocket because he doesn't want you to make him eat it or when you have to say things like, "Get your head out of the toilet, honey." As parents, more than anything, we want you to see our kiddos the way we see them -- as loveable, silly, and full of potential.

Saturday, November 19, 2011

me, being crafty

I've been trying to figure out what to put above Punkin's bed since we moved in back in April. I had plenty of framed pictures, or pictures that could be framed, but there is potential for injury in that situation. I found these at Target last night, and they might be perfect -- as long as Punkin doesn't figure out that they are stickers that he can peel off.  They were $10 and they don't hurt when you throw them.

Wednesday, November 16, 2011

make sure you get my good side

She's a 2007 Accord LX. My friend Jennie said the 7-year warranty because she's Honda Certified makes her sexxay. I'm hoping that because she doesn't come with $250 a piece alloy wheels, just regular steel ones, I may get to keep them for myself this time.

Tuesday, November 15, 2011

a little bit mushy

I know, I know, it's weeks too early to put up a Christmas tree; but when you have a three-day weekend, a crabby child, and a need for cheer, the logical decision is to break out your pre-lit Northern Pine. Last year I spent $1.99 on an uber-glittered gold star because we didn't have a proper one and I really thought Punkin would burst out of his skin when I unwrapped it this year.

Not so much. He was more like, "meh," until he saw the blue star. The blue cloth star. The blue cloth star with the Christmas tree on it. "Dis one, Mommy. I foun it! I did it!"

And you know what? It broke my heart -- but in the good way. In the way where it instantly gets rebuilt with liquid love glue. See, I found that star in a bin the first year I went to pick up presents for Punkin at the Salvation Army's Christmas Assistance Program (which is monumentally awesome by the way). 
And I know it's just a kid who wants everything the same telling me, "Mom, this blue star is the star we used last year and it's the star I feel comfortable with using again." But it's also more. It's a reminder of how silly it is of me to think there would be something better to adorn the top of our tree than a simple, physical reminder of the love of God demonstrated through the kindness and generosity of strangers.

When we were finished hanging ornaments, Punkin stood back and said, "Is booful."

"Punkin, when you see the tree, you can remember that Jesus loves you and that Mommy loves you."

Wednesday, November 9, 2011

i should have taken the trunk liner out before i left her

June 26, 2011
July 8, 2011
November 4, 2011
I can only hope her parts live happily on in other Accords across the nation.

Monday, November 7, 2011

my kid is awesome

I told him the letters and he wrote them. No lie. He spelled Oma, too.

Sunday, November 6, 2011

ice cream, i need ice cream

Once upon a time I owned a 1998 Toyota Camry. I crashed this Camry into another car on a perfectly beautiful day. The shop that repaired it had to fix the repair because the paint peeled off, and even so months later it peeled again. At that time I also discovered that the power-assist on my brakes was broken, which was likely the cause of my accident. By the time I sold the car several years later, for $300, it had mismatched wheels, one spare tire, a power steering fluid leak, a wobbly rear suspension, and a front end that rattled to the point that I feared it may fall off when I drove above 45mph.  And then there was the second accident, this time on a snowy day. The car wasn't in a good place.

So hooray, I got a new car -- a 2006 Honda Accord. Two weeks later, someone stole two of the alloy wheels and the brand-new tires. $500 deductible to replace $800 in wheels and repair $800 in body damage. Then, just a week ago, I noticed that the top of the door was bent as if someone had tried to break in. And Friday? Friday I crashed my car.

I am not meant to have nice things.

I was driving during my respite time at 9pm on a very busy street when I saw that an SUV was stopped at a green light. I hit the brakes, but not soon enough. My front bumper went under her back bumper, my hood crumpled, and all sorts of everything shattered. The airbags, however, did not go off. And I have a lot of airbags. The woman I hit called 911 and then told me that there was a car stopped in front of her, and of course that car had driven away. Lovely.

I cried. A lot. I've been through this before, but for some reason this time just sucked so bad, I think because there is the possibility they will total it and because my head hurts.

So, in an effort to make myself feel better, I will think not about how Punkin woke me up at 2am or about coming up with another $500 deductible (that's an entire paycheck); I will instead pray, know that God provides, be thankful that I am alive and in working order, and I will picture this:
Gracie, the church's comfort dog, with Punkin during worship today.