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Keepin’ It Real in the Autism Hood

I didn’t start this blog just to complain about snack cakes and Swiffer Wet Jets.

It’s about parenting a child on the spectrum.  I mostly go for humor, but that’s not always what’s going on.  And if I really want to be honest, and really want people to know what it’s like, then I shouldn’t hold back the unpleasant things.  This post will undoubtedly require follow-up posts, as this thing plays out to its conclusion.

Yesterday there was a note from the SPED teacher in Connor’s communication book.  I forgot to take a photo, but the gist of it was that Connor had been bothering another student at recess, to the point of the other student’s frustration, and he would be staying in from recess the next day.

Following is my email to the SPED teacher:

Dear SPED teacher:
Since Connor forgot his notebook yesterday and it just came home today, we are just now aware that there has been an issue during recess.  I’m a bit confused by this.  If there has been a problem occurring during recess time that is significant enough to result in Connor being denied recess, why have I not heard about it until now?

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I’d like to know more about what is happening.  Your note does not mention the specific behavior that is taking place, or the antecedent to the behavior.  While I appreciate the interventions you have put in place (social stories and tokens), if we don’t know what is causing the behavior to occur, there is a big piece missing, and frankly, a missed teaching opportunity.  If someone was there to intervene and show him how to handle the situation in an appropriate manner, I believe it would be more valuable to him than the consequences.

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The ARD we had prior to this year’s included an accomodation of having an additional aide or teacher during recess time, to assist Connor with social skills.  I’m not sure if that made it back into this year’s IEP, or if that intervention is still taking place.  Can you tell me if that is happening, and if so, how often?

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As part of Connor’s team, I am always available to discuss challenges that arise, and to be an active participant in determining how best to resolve the issue, and determine what supports are needed.  If I had been aware of this, I would have suggested playground intervention, and would not have approved his recess time being taken away.

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A part of Connor’s disabiltiy involves hyperactivity.  As such, physical exercise is imperative to him to be able to expend energy, which helps him to better focus during class time.  Segregating Connor from his class, and keeping him indoors will not resolve his social skills deficits.  Nor will it help him to build self esteem, or feel accepted.  I also don’t feel that it’s fair to punish him for something that is a very big piece of what defines autism.  I am requesting that this not be used in place of teaching appropriate behavior, and that it never be used unless a conversation has taken place with us beforehand.

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Whenever there is an issue with Connor, I always ask the question, “how did we fail Connor?”  For instance, we had a 1 1/2 hour meltdown over writing names on Valentine’s cards.  Connor has a disability, we know this.  It is not his fault he had the meltdown, it is our fault because we didn’t get in front of the behavior  by breaking it into smaller pieces, to alleviate the overload he experienced.

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So I ask you, how did we fail Connor when it comes to his social skills during recess??

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I have time tomorrow, Thursday, 2/16, from 12:30 – 1:00 p.m. to call you and discuss this further.  Please let me know if you are not available at that time, and what time would be better.

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Thank you,
Connor’s mom

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Clearly, it’s time to step out of my comfort zone, remind people that I’m part of this team, and start holding people accountable.

I don’t like this.  I hate this.  But it has to be done.

To be continued…

To Answer Karen’s Question, a Novel

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Karen, at SoloDialogue, left a comment on my last post (regarding Connor’s recent artwork) asking about how we had accomplished that milestone. Since most of my posts are written in about ten minutes, I thought it would be a good idea to spend a little more time providing some background and details on what we’ve done to get to this point, what works, and what hasn’t. Maybe someone will find it helpful. Maybe not. Most certainly, you will find it lengthy, simply because I can’t answer that question easily.

Connor was diagnosed, by a pediatric neurologist, at the age of 3 with Severe ADHD (yes, 3, it was that severe). We knew this diagnosis was coming. You don’t live with a child for three years, who never stops moving, hardly sleeps, and wreaks havoc on everything he can touch to not know that he has ADHD. At this point, we had to make decisions about medication.

I really believe that medication is a personal decision, and it’s up to each family to decide what is in the best interest of their child, and what will bring the child and family quality of life. This isn’t up for debate here, and negative comments will not be tolerated. It’s enough anguish for a family to have to face that decision, without the criticism of those that have not walked in their shoes, or the fringe element that wants to denounce the use of medication for any disorder (Scientologists, I’m talking to you, so move along somewhere else).

Anyway, medication helped a bit, and we moved on to an evaluation from the school district to see if he qualified for PPCD (early intervention), based on his ADHD diagnosis.

After 2 1/2 hours of testing and questions and observations, the diagnosticians sat down with us, smiled, and said that he qualified based on the ADHD, as well as having mild Asperger’s Syndrome. “Don’t worry, it’s really mild, and he should be able to live a pretty normal life.”

Don’t worry? What a slap in the face.

Figuring out which behaviors and deficits were due to ADHD or Asperger’s or typical child behavior was challenging. It still is. The biggest challenge we dealt with was aggression. It was mostly in the school/after school/summer camp environments. It was obvious that the stress of socializing was something he couldn’t manage on his own, despite therapy. We knew that socialization was impacted for both ADHD and Asperger’s.

We spent three years tweaking and changing medications, and we just got to a point a few months ago where things are working. We stopped the stimulant last year because it exacerbated the aggression. But although it lessened, it did not go away, so we introduced a mood stabilizer, which (although scary) has worked amazingly well. We added the stimulant back a couple of months ago because he was falling behind in school, and just couldn’t focus. We held our breath, worried the aggression would resurface, but it didn’t. Finally, we found a successful regimen that works.

But aside from medication, what else have we done? Did we solely rely on medication to “fix” our son’s problems so he could function outside the home?

No. I almost wish it was that easy.

As an aside, I should explain that before moving to Texas, I was an administrator for an agency serving adults with developmental disabilities. I worked with clients with mental retardation, autism, down’s syndrome, Fragile X, and a variety of mental illnesses including bi-polar disorder and schizophrenia. For years, I attended psychiatric appointments, team meetings, and advocated for integration and inclusion. Still, I was not prepared for this challenge in my home, with my child. But that background definitely gave me a host of behavioral management tools, and the ability to find resources.

The first therapy we did was attachment therapy. I think it’s an awesome therapy for kids with RAD, but not very helpful for a child that can’t sit still for 2 seconds, and gets frustrated and angry when made to sit in one spot. We did that for 3 months.

Next we tried a version of floor time therapy. We did that for several months, and graduated. We’re really, really good at sitting on the floor and playing with toys, what can I say? Was it helpful? Yes. Yes, it’s helpful to learn to have specific playtime each day, where your kid gets to be in charge and direct the play (appropriately), and have that control and one-on-one time with you.

Last year we had 6 months of in-home ABA therapy, done through students at the University of Texas. Since none of the ABA providers accept insurance, you must pay out-of-pocket and then try to get reimbursed from your private insurance company. And since we have a horrendous $2400 yearly out-of-pocket deductible, it wasn’t feasible for us to do it through a regular provider. The nice thing was that it was in our home, about 6-8 hours per week. The down side was that it was limited to 6 months. So we really took advantage of it, and made sure to continue with what we learned once it ended. It has come in very handy with schoolwork, which I will get to shortly.

The next therapy, and the one we still continue with, is social skills playgroup. Connor has been attending for over a year-and-a-half. They meet each week, for 45 minutes, in a group of about 5-6 kids the same age. The curriculum covers everything from learning to share, taking turns, accepting no, conversation skills, etc. It’s slow progress, but progress nonetheless, and Connor really looks forward to his weekly play group.

Now I know that we are all dealing with varying degrees of diagnosis’, and that means that each person’s interventions for their child will be different. We all know the saying about how “when you’ve met one person with autism”, yadda yadda. All I can say in that regard is you have to keep trying different things, and find the approach that works best for your child. There’s no use in comparing your kid with other kids, because sometimes you can’t “see” the challenges that others may face.

For example, some children with autism will sit in the corner, quietly lining up toys and not making eye contact or speaking to their parent. My son ran laps through the house, leaving a trail of toys and debris in his wake. That may sound “typical”, but he was always moving so fast that he could not focus and make eye contact or have meaningful conversation.

He did not toe-walk, nor did he have an obsessive interest in one particular subject. But he would completely melt down and freak out if I set a cup of milk on the kitchen island, instead of the kitchen table. It didn’t follow his preconceived script of what would happen, and he would demand that I relocate the offending cup to the table. My refusal resulted in screams, and Connor lying on the floor, kicking, crying, yelling. For 45 minutes. Over a cup of milk.

He was fine the day I picked him up from school, and announced that we had to make an unexpected stop at the grocery store for a couple of items.

He was not fine the day I picked him up from school and announced that I had to run to the pharmacy to pick up a prescription. Well, to be fair, he was fine with it, initially. But when I drove to a different pharmacy than usual, one that was actually closer to home, he completely Lost. His. Shit. “This isn’t the pharmacy we go to. We’re not supposed to go to this one. Turn the car around!! Go to the other pharmacy!!!!” Again, the expected outcome changed, and he just could not cope with it. The meltdown continued through the pharmacy drive-thru, all the way home, and into the house.

It doesn’t matter what you think you know about the child, you probably have no idea what’s really going on. The challenges might not always be obvious to others, but they are still big challenges.

This brings me to our approach to things in our home.

I read a lot of blogs (when I can), and I read about the “acceptance” of autism, the acceptance of the diagnosis. From a cognitive standpoint, I understand this. But from an emotional standpoint, I struggle. See, I have control issues. We are supposed to be able to control our children, and then you have a child on the spectrum and you have to come to terms with the fact that you can actually control very little. A short list of things we were unable to control are: sleep, potty training, feeding, and behavior.

The short answer for some things is that Connor did them when he was good and ready, and not one moment earlier. That holds true for eating and potty training. He wasn’t completely trained until almost the age of 4. That doesn’t mean that we didn’t work on it consistently, and offer rewards and bribes. It just means that it wasn’t going to happen until he was ready for it to happen.

As for other things….

I mentioned my control issues. Well let’s revisit that milk meltdown I mentioned earlier.

I knew if I gave in to his demand to put the cup on the table, that I would endure a stream of never-ending, unreasonable demands. So I let him throw his fit. I told him the cup was right there, whenever he was ready to take it. He kicked and screamed, and, at one point, got up and looked like he might throw the cup of milk. I told him if he knocked it over, I would make him clean it up, pour another one, and put it right back in the same spot. He knew I was serious, because we had had standoffs before that lasted hours. So he carried on and on, until he finally gave in and got the cup. I followed up with big praise to reinforce him for doing it.

Homework? Sort of the same approach.

Regardless of what I think about homework, and school curriculum, the fact remains that homework is sent home. We spent almost all of kindergarten establishing the routine of sitting down every single night to do homework before dinner. The table must be completely clear, because even a piece of extra paper will be enough of a distraction to derail him. We had many, many fights about homework.

For a while, I sat down at the table with M&Ms every night, and used them as an incentive. Finish one line of letters, get an M&M. Finish the page, get 3 more, and so on. I also made it into a game of beat the timer. We have a digital kitchen timer that beeps, as well as an hourglass with sand that measures 5 minutes. I would make it a game to see if he could win, because he is VERY motivated by winning. But that didn’t mean he could do sloppy work. If his letters were floating up in space (above the line) or were extra big, he’d have to erase and start over. And he did, many times.

3 M&Ms if you get to the end of this post...

Also, I employed the first/then strategy. First we do homework, then we can have dinner. See, we will all sit there and starve if it doesn’t get done.

There were melt downs, believe me. There was one evening when he got so angry with me, that he held up his pencil, pointed at my face. I took a deep breath and said, “I can see that you’re feeling very angry. Homework is hard. But the more you practice and do your work, the smarter you will be, and the easier it will be. I’m your mom, and my job is to help teach you, and I won’t let you give up. If you’re so angry that you want to hurt me with that pencil, then go ahead, but it will just make you feel so much worse.” And I moved my face closer to him, and held by breath.

I still have both my eyes.

Control. I have control issues, I told you.

I accept that Connor is on the spectrum somewhere. But I don’t accept that I will let that dictate his potential for success. As I mentioned, my former job included advocating for integration and inclusion. That’s what I believe in, to the extent possible. If I want my son to have a chance at life, to be able to get through school, I have to fight for inclusion. But I also have to help him minimize his behaviors, and learn coping strategies so he can be included.

I’m going to die, someday. I will die, and Connor will still be here, without us to protect him and fight for him. He has to learn to pick up that cup of milk, get that homework done, and ultimately, to take care of himself. That means I will spend hours teaching him the difference between playful teasing and mean teasing, how to read and write, how to deal with unexpected changes, and how to deal with people.

Karen, my friend, I hope this gives you some answers or, at least some ideas. I’ll almost bet you’re sorry you asked!

As for me, I’m glad to be done with this. Writing a cohesive, thought-out piece is not my forte. It was long, and rambling, and took far more attention than I normally have. I’m much better at writing about zombies or dingoes.

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