LIFE IS A SPECTRUM

1stschool

First day of school with Willow, his best bud / sister/ best therapy money can't buy.

I’m long overdue for this update. Partly, it’s because I now work full-time outside the home and have less blogging time. And partly, I’ve blogged less because we’ve just been busy living our lives.Not that we weren’t living, obviously, when I was blogging a lot more. But I’ll be honest: I didn’t get out of the house much.

In the past year, we’ve taken our first family vacation together (without extra child care help), Billy has started after-school, and we have a cadre of phenomenal babysitters, who have assured me that Billy is by no means the most difficult kid they babysit … in our house.

Yes, my “special needs” kid is currently by FAR the easiest kid to parent in many ways. Let me quote the wisdom of a refrigerator magnet I picked up somewhere: “Normal is just a setting on a washing machine.”

So Billy is in first-grade and mainstreamed now. He has an amazing teacher (the same awesome lady he had for kindergarten), as well as a team of therapists and aides that support him at various times during the day – particularly during writing and math, which are his least favorites.

He loves reading – and he’s pretty good at it! He’s an awesome artist and has a real passion for drawing. We’ve discovered he can hula-hoop better than anyone we know, and he picked up the jump rope and started doing it almost instantly. Who knew?!

There are SO many factors which play a part in all the progress he’s made, but I wanted to highlight a couple of points:

ABA Therapy – Applied Behavior Analysis changed our world for the better. I definitely think we lucked out with the greatest therapists in the world, but I also think the therapy was exactly what Billy needed – and us too.

We went from him being un-potty trained at the age of 4 ½ and incapable of holding a conversation with anyone to … less than two years later, he initiates conversations with peers, tells jokes – and poops in restaurant bathrooms completely unaided. He can dress himself, participate in circle time, tell me about his day (a bit), attend birthday parties, play games with friends in after-school.

This is not to discount the phenomenal contributions from speech therapy, occupational therapy (which helped significantly with his strides in handwriting and dressing), and special education. I highlight ABA because they go with us everywhere they’re needed. We have a problem with including Billy at church? Our ABA therapist shows up and gives us suggestions. We struggle with eating (an ongoing struggle, to be honest): They come to dinner with us (God help them) and observe, analyze and craft a plan for measureable improvement.

At no point do they try to “break his will” or just “teach him scripts.” Ok, certain scripts he has learned, like the answer to “What’s your address?” or how to say “Hi, I’m Billy!” But they push him to expand his comfort zone and use the language he has in a variety of settings and as a result, he applies it more and more effectively and has grown his social vocabulary enormously.

Focalin XR: This is the stimulant Billy began taking about 8 months ago for ADHD. One of his therapists who had observed him over a couple of years said that “there are attention problems that I don’t think can be explained totally by autism. We should have him checked out for ADHD.”

Now, attention disorders don’t always – in fact, they rarely – behave the same way with a child with autism as with ADHD-only kids. They metabolize everything differently. And kids with autism respond differently to new stimuli – which the “on my meds” world can offer sometimes.

For years, I had been VERY skeptical about medications and autism. I had seen so many kids who seemed to be over-medicated … or seemed to my COMPLETELY inexpert eye.I say all this so that you’ll understand the massive nature of my turnaround. Focalin changed Billy’s world. I have no doubt he would not be mainstreamed right now if it weren’t for getting him the medication he needed to calm his system.
He used to rock his chair non-stop at the dinner and homework table, script all the time, buzz back and forth and crash and bang into things. Now we have conversations with him; he focuses on instructions at school, and he can happily complete a task – whether it’s homework or drawing a picture of his own creation – and take pleasure from those activities.

I’m not suggesting that meds are the answer for everyone – not at all. I’m just sharing my experience, in case there is someone as “on the fence” as I was who was wondering what they outcome had been for one family.

Word of caution: getting the medication right AND the dosage of the medication tweaked can take some time. Based on Billy’s weight, the guidelines recommend he should be getting twice as much, but when we doubled his dose, he seemed to get really anxious. So with our doctor’s guidance, and therapist’s data and recommendations, we cut him right back to the minimum dose.

Eventually, when he gains a little weight, we will probably try upping the dose again and see how he handles it. Because he could probably still use a little more help with his attention, but he’s doing so much better that we’re not stressing about it.

OCTAGON-299x296

Happy Halloween!

Life is good. Life is a spectrum – of success, of disappointment, of happiness and fulfillment -- but that’s a very good thing.

Yesterday morning, I walked Billy to school. Prior to this morning, he had been quite insistent, when I asked him what he wanted to be for Halloween, that he wanted to be an “octagon.”

Don’t get me wrong: I don’t try to stifle my kids’ unique, creative spirit. I was fully prepared to create a sandwich board-style stop sign costume for him, if that was, indeed, what he wanted to be for Halloween. But I tried to keep introducing him, in a non-pushy way, to other costume ideas that might be easier to wear all day at school …

Well, in the midst of our discussion of all the costumes our friends might wear, Billy ran into a buddy waiting at the cross-walk.

BUDDY: (at top volume) Hi, BILLY!!!!!!!!

BILLY: (at subdued volume) Hi, Buddy.

(then)

BILLY: What do you want to be for Halloween, Buddy?

(At this point, I had to pick myself up the ground so shocked was I that he had initiated an on-point conversation with a peer, a question that was entirely appropriate for his age and the social setting – unlike the recent survey he’s been running with any and all passers-by: “What color is your house?” )

BUDDY: I’m going to be a SCARY MAN!!!

BILLY: (after a pause) What kind of scary man are you going to be?

(And at this point, I think I lost consciousness for a full thirty seconds and I came back to life – after this unprecedented FOLLOW-UP QUESTION – to find Buddy explaining to Billy about how his Scary Man costume would have red eyes.)

BILLY: That’s cool. (in a voice that said he wasn’t convinced at all that this was cool, thus proving that he is trying out the art of the socially acceptable lie to save someone’s feelings.)

BUDDY: What do you want to be for Halloween, Billy?

(The mom is listening. The crossing guard is listening. Other parents and their kids have started listening. Oh dear, Oh dear, Oh dear. Don't laugh at him. Support his unique choices. If you act like my son is weird I will punch you.)

BILLY: An artist.

(Wait, what? AN ARTIST!? HALLELUJAH! It’s a person! It’s something he’s genuinely interested in!)

BUDDY’S MOM: Well, that’s … unusual.

(At this point, I burst into hysterical laughter. “Unusual?!” Lady, you got no idea.)

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Hooray for Billy!

Total 7 comments

There was a time, not too long ago, when Billy never asked a question. NEVER. Then, around the age of 3, he started SOMETIMES wondering about stuff that was missing: “Where’s Mama?” or “Where’s Daddy?” or more likely “Where’s Thomas and Percy and Gordon and Rheneas and…?” And another year passed.

I watched other parents roll their eyes as their toddlers badgered them with questions in the grocery store: What is that? What is that? What is THAT? But WHAT. IS. THAT?!

I wasn’t sure if I’d ever hear that kind of passionate curiosity from Billy.

Asking questions can be tough for autistic kids. To ask someone else a question, you have to first be aware they are in the room. Second, you have to understand that they have information you need. And then you need to be able to verbalize your need for information in the appropriate form. It took us several years to make our way through steps one and two.

And I can still remember the moment, after years of speech and ABA therapy, when Billy asked the first question that showed real curiosity. He was in the bathroom, looking at a “magazine” (Toys R Us catalog). Then he pointed at a picture and asked, “What are they doing?”

The floodgates were opened. (Considering the location, maybe that’s an unfortunate choice of phrase on my part. Still, you know what I mean …)

Questions remain difficult. Sometimes they’re quirky and frequently oddly phrased. Sometimes he wants information that I simply do not have. Neither does any other human being on the planet Earth. His curiosity, now unbridled, runs the gamut of its own spectrum. But I take each question, however difficult, as seriously as possible and give him the best answer of which I’m capable:

BILLY: Can I watch Berenstain Bears for one hundred minutes?

ME: No, but you can watch TV for 10 minutes.

BILLY: Is brown angry?

ME: That’s a good question. (Is it? I don’t know, but I’m buying myself time.) Brown is not a very happy color, it must be said.

BILLY: Who was the man on “The Small World?” (We rode “The Small World” 5 times at Disney last summer, and unlike my son, I do not have perfect recall of everyone who rode with us.)

ME: Sorry. I don’t remember. If we see him again, we’ll ask.

BILLY: Can I have one hundred M&Ms?

ME: You can have ONE M&M when you sit down nicely for homework.

BILLY: Why is homework? WHY?

ME: Homework helps us learn new things.

BILLY: Can I have a gun?

ME: No.

lemur8

Question: Are these pets? Answer: NO.

BILLY: Can I have a lemur?

ME: No.

BILLY: Can I have one hundred lemurs?

ME: Definitely not.

BILLY: What are YOU feeling?

ME: A lot of things. Love, a little anxiety, humor – that means something is funny – and happiness.

BILLY: Can we go see Colin Powell?

ME: Sure, buddy. After homework. (Thank you, YouTube.)

If anyone had told me this moment would be possible even a year ago, I wouldn't have believed it. But autism or no autism, we have no idea what is possible ... Life is a spectrum, yes, but it is so much more. It has dimensions we can't see and takes us on a journey that has as many ups and downs as it has steps forward. Ask a parent to describe a moment so joyful that she can't swallow the tears fast enough, and we realize how inadequate words are to describe life. Luckily, we have more than words. We have iPhones. And we have music ...

Billy_Swing

When I first heard the “A-word,” I was devastated because I thought my child was going to turn into some kind of robot. That he would refuse to hug me, become incapable of laughter, never have friends, never know love. That's what I thought autism meant. Because at the time, I had no idea what life on the spectrum would really be like ...

---------

INT. BEDTIME – LAST NIGHT

Billy is tucked into bed. My hand is on the light switch when he starts whimpering.

Me: Billy, why are you crying?

Billy: I’m crying because, because… because Mama is leaving.

Me: I’m just going to my room. I’m not going very far.

Billy: Can you hug me?

Me: Of course I can hug you.

And I jump up on his bed next to him and give him a big bear hug.

Billy: (muffled, into my shoulder) Can you hug me for a hundred minutes?

------------

We didn’t hug for a hundred minutes, but we hugged for a long time, long enough for me to remember how afraid I’d been that he would lose this, long enough for a tiny little spark of fear to tickle at the back of my mind: Would a day come when he wouldn’t want to hug for a hundred minutes?

Of course it will. And most mothers fear that day.

If anything, Billy's autism is more about a surplus of emotion, and how to deal with it, rather than a lack of emotion. Most of the autistic kids I know seem to be that way. Billy's emotional maturity is closer to that of his 2 1/2 year old sister than his kindergarten peers. He can go from zero to sixty -- happy to to miserable -- in about three seconds flat. But he usually gets over it just as quickly.

And he’s becoming more independent every day. This new wave of separation anxiety is caused in part, I think, by the fact I’ve been working more. I'm a working mom now, and there are a couple of afternoons each week that I’m not the one to pick him up at school. I put in a full work day each Friday now, and a wonderful grad student in the speech pathology program at FSU walks him home and plays with him for a couple of hours.

I worry about being away from him. I stress that he stresses. I debate about the cost-benefit of having more money to put into therapy and extracurricular activities vs. being home with him full-time.

I’ll be honest: Working is good for my sanity. When I stayed at home full-time with both kids – which I did until fairly recently – I was a crazy person. I am not cut out for that job, because I got steadily crazier with each passing day. I never felt like I was doing a good job, never felt like I finished anything … before it got covered in something sticky and I had to wash it or glue it back together or throw it away when no one was looking. Anybody who thinks stay-at-home parents have an easy job needs a punch in the face ... and a week spent as a stay-at-home parent.

Unlike parenting, at the office, each project has a beginning, middle and end. Even the hardest job just seems so ... easy. Occasionally, I get told, “That’s really good work!” instead of having a small, running, naked person scream, “I don’t want to poo-poo!!” at me. To date, no one at my office has screamed at me because they didn’t want to poo-poo.

Of course, none of them want to hug me for a hundred minutes either.

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I just found your blog (thank you Twitter! Thank you FSU Film!). This is a very heartening recount of your "hug" time and it made me feel like I was right there experiencing that wonderful moment with you. Will send supportive thoughts as you continue on your "working mom" journey. I still struggle with it every. single. day. (And my kids are 12 and 15). We all just have to help each other out!!

Total 14 comments

Billy and his baby sister are thick as thieves these days ...

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Snippets 'N Stuff

Sweet. :)

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