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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.

*

Contradictions

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I may regret what I’m about to put in writing, but this past 4 weeks has been the most peaceful and pleasant we’ve had in the last 3 years.

In the last 3 years.  3 years.

For 3 years, Connor has been irritable and moody.  That’s a long time to walk on eggshells, friends.  A very long time.

For 3 years, Connor has been the boy prone to aggression.  Not random, out-of-the-blue aggression.  It’s always in response to a real or perceived injustice or slight.  A toy taken, a rule broken, an unkind word said…things that would be met with a push, or a hit.

3 years of bad reports.  3 years of punishments and consequences.  3 years of various therapies.  3 years of wondering if we were failed parents.

4 weeks ago we stopped one of the medications, against the doctor’s advice.  4 weeks ago the irritability subsided, the aggression stopped.

For 3 years, Connor was defined a certain way, put into a certain category.  Now he must be redefined, recategorized.

2 weeks ago, we went to a picnic at the park.  Connor saw a little girl on the swing.  He went up to her mother and asked to push her on the swing.

A strong breeze would have given her a harder push.

3 years later...

.

Rocks and Hard Places

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I prefer to not talk about medication, because it’s a polarizing topic.  Instead I’ve written a “story”, about a family with a boy that takes medication.

****

Little Man was three, and he had so much energy that he had already been kicked out of two daycares.  Mommy and daddy were worried, and frazzled.  They knew something was different about him.  And they were trying to hold down jobs, which was becoming increasingly difficult when nobody could handle their child.  So they made an appointment with The Doctor.

The Doctor knew right away that Little Man had ADHD.  He was like Tigger the Tiger, always bouncing here and there, distracted by butterflies and ants and sunshine and air.  The Doctor started Little Man on a medicine to help him.  The medicine is a stimulant.  Mommy and Daddy were nervous, but wanted desperately to help Little Man.

They're bouncy, bouncy, bouncy, bouncy, fun, fun, fun, fun, fun!

For a while, Little Man did much better on the medication.  But after a while, it seemed less and less effective.  It was changed to an extended release version, designed to last 8-10 hours.

Because of Little Man’s metabolism, it lasted 3-4 hours.  The Doctor prescribed it twice a day, and soon Little Man was at the maximum dosage. 

Stimulants tend to affect a person’s sleep, and soon Little Man was up every night, waking up Mommy and Daddy at 2am, 3am, 4am.  When people are sleep deprived, it begins to take a toll on their health.  Mommy and Daddy were not doing well, and they talked to The Doctor about it.  He added a medication at nighttime, to help Little Man sleep.

For a while, things went well.  Everyone was sleeping again.  But time passed, and Little Man became more and more irritable.  Stimulants can have this effect.  The Doctor added a mood stabilizer medication, to counter the effects from the stimulant.  He also added a non-stimulant ADHD medication, because the stimulant was losing its effect.

Now Little Man is five-years-old and on four medications.  He was still very irritable, and was now having episodes of aggression.  Mommy and Daddy walked on eggshells around Little Man, and Mommy began to fear him because he is a very strong child.  Mommy began to worry that Little Man would have to be hospitalized.  Things were very dark.

Then Friday night, as Mommy sat crying again, she decided that the medications would stop the next day.  They would have a medication free weekend.

Mommy was very relieved to see that Little Man was back to his bouncy, happy self.  There was no irritability and no aggression.  Even when he was sent for timeout for not listening, he did not yell or slam doors.  There was a lot of laughter over the weekend, and Little Man was very, very affectionate.  Mommy was so happy to see that her child was not out-of-control, and she stopped thinking about hospitals.

Little Man slept well all weekend.  He even agreed to read some words for Mommy, which he does not like to do.  It took twice as long to get anything done, but they were all much happier.

But they did worry about school.  Little Man was as distracted as ever.  Mommy and Daddy stayed up late, talking about medication.  They decided to give him ONLY the non-stimulant medication on Monday, and hope for the best.  They would consult with The Doctor (who they were starting to lose faith in), and see how things went at school.

Mommy and Daddy knew the school would not be happy, but they didn’t care.  They had been travelling this dark and lonely road all by themselves, with no help.  The school was not there to help them when Little Man was breaking things and screaming.  Even their family and friends did not understand. 

They were just glad to have their happy, bouncy child back.  And maybe the rest would just fall into place, and they would find a happy ending.

Holiday Stress, YMCA and Pflugerville ISD

With Connor in kindergarten this year, it was our first time seeing the effects of school combined with holiday stress.  The last week and a half before the holiday break was a real challenge.  We saw our normally happy child exhibit a big spike in aggression and anxiety. 

A couple of incidents at school involving hitting, and I was emailing the teacher, special ed teacher, district autism specialist, and our behaviorist.  Simple common sense tells me that when a child is anxious, and exhibiting a loss of control as a result, then they need some extra supports to help them with coping strategies.  Initially, the teachers did not agree, and chalked it up to holiday angst, recommended that any changes right now would not be a good idea, and informed me they would monitor after the holidays.

Huh?  I don’t think so.

Our behaviorist, on the other hand, completely agreed, and sent a list of interventions to try until the holiday break.  They were simple tools, aimed at helping Connor get out extra energy, and providing a little more structure at recess time, when he was having challenges. 

In an amazing about-face, the teachers and autism specialist “agreed”, and the rest of the week went by without further incident.  In my ongoing commitment to being diplomatic, I humbly thanked them for their enthusiasm at helping Connor through the rest of the week.  It was great that they saw the value of our behaviorist’s recommendations, and I can only hope that in the future they also see the value of parents recommendations, namely, mine.  I’m told by others that my experience is an unfortunately common one.  On a positive note, we have all established my reluctance to be dismissed, and my commitment to a team approach.  Yay team!!!!

And then there’s the YMCA…..

Of course the challenges carried over there as well.  I asked every day if they were using the “happy face” chart and prize box.  Ummmm, no.  Alrighty then, I’m afraid I cannot address your concerns unless you are using the abundant tools that I have provided. 

Next day, better.  They used the chart.  “So you used the tools, and the behavior was better?  So I guess you guys have a handle on things now, and I won’t need to provide any more reminders about using the tools, right?”

It ain’t easy being an advocate.  The hardest part is living in a state that is so very far behind in services for the disabled population.  There are not adequate programs, people have had very little training, it’s still like a foreign concept here.  So I provide tools, I advocate, I teach, and I remind.  I remind them constantly that my son is not going away.  And worse, I am not going away.  Not following through is not an option, because I will be there again and again, asking questions and holding people accountable.  Good grief, these children are your neighbors, your friends, your relatives.  You will not pretend they don’t exist, and you will not just dismiss them when they don’t fit inside your box.

And now we are in the middle of holiday break, and it is going so nicely.  My child is happy, bubbly, and pleasant.  He spent 45 minutes at the McDonald’s playscape, making friends, playing nicely, having good manners, and being a pure joy.  That’s the best Christmas gift I could have received.

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