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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.

*

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18 responses »

  1. Wow. Thank you for this post! Seriously.

    So much of Connor sounds like my Little Miss… the inability to sit still… the flurry of activity that prevents social contact. The milk meltdown (we have had several just. like. it!).

    And yes, at the ripe age of almost 4, we are looking at the very real question of whether we too may need to medicate. I haven’t shared it on my blog yet because I do not have enough information to talk coherently about the topic… but we have an appointment in March that I’m dreading…

    So thank you again. This helps a LOT!

    Reply
  2. Wow! How do I rate?! Who knew my little question would set in motion, such a thorough and informative post!! I’m taking partial credit!

    Really, though, this was amazingly good information. I learned so much about you and Connor here. We don’t have the degree of ADHD you have but we do have sone similar stuff going on. I’ve often thought of meds as a possibility but I want to work on the sleep seizure med stuff to see where we wind up.

    I have the same control issues. When I do these things, my little manipulator starts whining for his dad “want your daddy” (trust me he means HIS dad not mine – big difference!) but I will still finish whatever stand off and goodness help him if the hubs crosses my path…

    I need to emulate your strength cuz I have to admit that I’m weak sometimes and just give on to avoid the hour long meltdowns.

    You have been quite the inspiration today! But, uh, where are my m&ms? πŸ˜‰

    Reply
  3. Frick, I can’t find my three M&M’s down here.

    Seriously, you do a bang up job of long posts. I’m of the camp of, “Yeah, my kid has Autism and I’m Ok with that…now lets see how much we can do to help him become a better person. And, yeah, you still have to do your homework.”

    Very well said. Well done.

    Reply
  4. the beauty about finding other moms with kids on the spectrum, is that there’s just so much to relate to, and that gives comfort. It’s also sad, because jesus–it’s wearying. I lived so, so much of that “you went the wrong way…you went to the WRONG store…” stuff when Jack was younger. He doesn’t do that as much anymore. Is this because I’ve given up springing these outings on him when I still should? Must ponder this.

    You know what pisses me off no end? We can’t afford to fork out the thousands of dollars needed to help our kids, so we become the unpaid therapists and experts. Damn it. Let’s all have a group hug and pat ourselves on the backs. It’s been a long f*cking road.

    Reply
  5. Excellent post! I’m so proud of you for being so serious and informative! And of course for making me laugh. BTW I am so glad he didn’t stab you with the pencil! πŸ˜€

    Reply
  6. Wow, you have a lot of readers named Karen.

    Thanks for posting this. It’s always helpful and informative to learn about what others have been through. You’re good at novels, too, btw.

    I’ve given up trying to figure out where the autism ends and the ADHD begins. It’s still a mystery to me.

    Reply
  7. Connor sounds like my son when he was younger. Kicked out of 3 preschools by the time he was 3, socializing with other kids was a nightmare. A family day care situation worked better. He was aggressive, he was hyper. We did meds for ADHD starting at 4.

    And potty training by four? That’s the average age for boys, according to my pediatrician.

    Homework was the cause for nightly wailing and gnashing of teeth (me), while he ran around the room, broke pencils and ripped up homework papers. I went through a lot of tape in those days.

    You’re fortunate that Connor was diagnosed with Asperger’s so young, so you could start therapy and establish habits before all of the less helpful stuff was ingrained.

    It’s hard to know what diagnosis is the impetus for various behaviors – we’re dealing with ADHD, Bipolar and Asperger’s – who knows what can be improved by tweaking meds, or what can be lessened by maturity?

    It’s quite an adventure, isn’t it?

    Reply
    • Oh yes, we were also kicked out of some places at the age of 3. It’s so hard to deal with sometimes, but it does get better with maturity. It’s a wild ride, and some days I’m hanging on for my life.

      Reply
  8. Except for the no obsessing over one particular subject you could completely be talking about my Connor. I really like the M&M idea and might have to implement that here. Thank you for taking the time to write this all out it is so helpful to get ideas/strategies and even just knowing someone else is dealing with the same kind of stuff.

    Reply
    • I will resort to any bribe possible to get things done. And if it works, what the heck. The tip is doing it in small increments so it’s not like they’re overloading on junk. His homework is usually only 1-2 pages, so at most he’s getting 15 M&Ms.

      Reply
  9. I love this post, it’s packed full of great info and also gives a little window into your lives. I love the M&Ms (though am also disappointed not to have found mine at the bottom!) idea. More than that, I love seeing the progression, and being reminded that while difficulties may persist, things can get better.

    And yeah, ditto to Karen Somethingorother’s last paragraph.

    Reply
  10. This is really good. So happy you took the time to get it all out because it’s definitely helpful information! BTW – we really need some kind of M&M “grab button” at the very least, don’t you think??

    Reply

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