My story - My ADHD plus more son

I thought it appropriate to share my family's story of our journey through ADHD, learning disabilities and mood disorders. I call it a journey because I think it might go on forever. Some days it feels like that.

My story is about our son. He is my oldest of two kids. He is currently 11 years old in the sixth grade. We have this great picture of him at 6 weeks in his bouncy chair with the biggest grin you have ever seen. For years that grin was my sunshine. And some days, it still is. But those genuine smiles come less frequently now and I pray that their frequency will return in the future.

We were all good until the age of two. I should have seen what was coming at 18 months when he started climbing out of his crib! Got a "big boy" bed. Then literally overnight, right after his 2nd birthday, he refused to stay in bed. It all went down from there.

He spent two years in preschool, full time, before kindergarten. Thank God for the ladies in that preschool. Any other place would have kicked us to the curb. He wasn't really a "mean" preschooler. But boy if someone made him mad his teeth could find your skin before you knew what bit you. Sometimes a kicking foot too! By the end of preschool they had "talked" to us enough that we decided, at his age of almost 5, we would finally seek some "professional" help.

Here is what is ironic about that though...We are two master degreed mental health professionals! And we really DID NOT want to go there yet. But we were left with no choice because he was months from starting kindergarten and I knew that would be a disaster if something didn't change.

So off we go to a developmental pediatrician who runs a clinic specializing in ADHD and the like. We come away from there with

  • bright boy
  • Encephalopathy unspecified
  • Sensory Integration Disorder
  • rule out ADHD
  • and a stimulant medication prescription

So basically they were saying his nervous system wasn't fully developed and he might have ADHD and they gave us medicine and recommended occupational therapy (OT).

And here is what happened...I can't remember the medication but when he tried it, it made him crazy hyper weird for a few days until they had us switch to another med that also made him crazy hyper weird so then they put him on Wellbutrin which did not make him crazy hyper weird and actually seemed to calm him down a bit.

We started OT to deal with the sensory issues. He kept up the OT for almost a year. Took a little break and went again for about 9 months until he broke his arm and couldn't do it. I think OT was good for him. Gave him lots of sensory input so he wasn't seeking as much from the world.

We made it through kindergarten. He survived, barely. However, he wasn't learning as quickly as I thought he should because he really is very bright and was extremely verbal from a very young age. And by the end of kindergarten, his anger and tantrums has surfaced again more frequently.

The summer after kinder I asked the doctor to maybe increase his Wellbutrin dose as it didn't seem to be working anymore. They wanted to do another evaluation. I wasn't sure that would help and decided I wanted a second opinion and other options. So we investigated a clinic that specializes in Neurofeedback.

Long story short - They did an evaluation. Very bright boy. Definitely ADHD. Even did an EEG brain scan. Could definitely see the ADHD. Good news was it didn't look like bipolar, whatever that would look like on an EEG. (I had asked about it specifically because we do have family history of depression and mood disorders.) Recommended neurofeedback, of course, to the tune of $3000. Also recommended a doctor for medication because the way school was going it was pretty obvious he needed some.

You can visit the alternative treatment page to get to more information about neurofeedback. I think for some it can be a good thing. For us, not so much. My son was barely 6 when he started it and it appears to be something to do when you are invested in your own change. What 6 year old wants to change? Plus, the diagnosis must be accurate so they know what kind of training to do and at that point, I don't think his primary diagnosis (ADHD) was accurate.

However, the medical doctor they recommended was great. We still see him. At that point, we were starting from scratch and I can tell you that over the last 5 years we have gone through the following medications in no particular order and some in concert with each other -

  • strattera
  • zoloft
  • depakote
  • clonidine
  • ritalin
  • ritalin XR
  • concerta
  • abilify
  • and focalin XR

I'm sure I am forgetting some. Currently he takes depakote, focalin XR, and a heavy dose of omega 3's.

Halfway through 1st grade we had to switch schools because he was getting in so much trouble they were ready to test him for possible special ed placement and I knew that based on their criteria, they would go for an ED (emotionally disturbed) placement and try to self contain him. Plus, I felt like half the problem with that year was his teacher. She could piss a gnat off if she wanted to!

Switch schools, get a GREAT teacher and he survives 1st grade. His great 1st grade teacher picks a GREAT 2nd grade teacher and with the help of a med adjustment, he survives 2nd grade.

This is not to say he wasn't a handful, especially at home. And still occasionally got in trouble at school but always during unstructured times like recess and transitions.

So that summer we looked into physio-neuro therapy. And again, for $3000, we do the "program" for 6 months. I discuss physio-neuro therapy in alternative treatments. I think it is a great thing, but again not so much for us. Why? Because the guy who was my son's trainer was an idiot! He always managed to make me feel like I was the problem. Making comments about activities my son got to do and if his behavior warranted "the privilege and so on. But I stuck with it because I wanted to give it a chance to work.

Side note: Turns out I was right about the guy because I found out not too long ago that the psychologist that owned part of the business bought that guy out and sent him packing because he was making other parents feel the same way and wouldn't listen to reason!

The best thing about it was that we got to have an evaluation done by a pediatric neuro-psychologist and found out why he wasn't learning in school like I thought he should have been.

HE HAS A LEARNING DISABILITY! A legitimate and significant disability in reading and writing. So, enter the special ed resource teacher. He starts in October of 3rd grade going twice a day to see the resource teacher.

3rd grade by the way was going pretty well because our GREAT 2nd grade teacher had chosen a GREAT 3rd grade teacher.

Then came 4th grade. 4th grade with only two classrooms, 30+ kids in each room and one of the teachers on maternity leave. (not my son's though that ended up not mattering)

I wasn't sure about his teacher but I didn't have any choice. He had a hard time. Too many kids in the class. His teacher? Not so great. He was still in resource but the work he had to do in the regular class was really hard. And then the bottom fell out!

His classroom teacher decided she wasn't being a very good teacher and needed a "break." This "break" happened during the weeks between Thanksgiving and Christmas. The very weeks when all of the kids are crazy anyway. SPECTACULAR!

Enter, a long term sub. And let me just put it this way. She sucked! As each day passed he continued to get in more and more trouble. Even running off campus one day and they had to call the police to get him to return. He ended up suspended the week before xmas break and I sent him to his grandmother so we could all have a break.

Upon our return from xmas break, we have a "meeting." And finally we concede to let them put him in the self-contained ED classroom. ONLY because I knew the teacher from that room and had high respects for her.

So, in he goes. He seems to be doing pretty good. Then what happens? Because another ED teacher needs a "break" too, they reshuffle some kids and want to switch my kid's teacher to a different ED classroom.

Now I will say that that teacher has turned out fine. It's a male and I actually think that has been good for my son. But boy was I mad when they pulled that one on me. So we end 4th grade, get through 5th grade (same teacher), and start 6th grade (again, same teacher) and here we are.

He is maintaining on his medication pretty well. Though I hate giving them to him everyday and am always looking for some other option. His reading is finally almost at grade level but only because we took out a loan and spent major dollars putting him through the Lindamood-Bell program. Four hours a day for 12 weeks of one-on-one training/tutoring. The transformation was worth every penny. He jumped almost 3 grade levels in 12 weeks!!

He still only sits with an official diagnosis of ADHD and LD and a secondary classification at school of ED. However, it seems pretty obvious he likely has some kind of mood disorder since prior to the Focalin XR, every time we have tried to give him a stimulant medication he becomes the angriest, meanest kid on the planet. I discuss that phenomenon in on medicine page.

Anyway, I hope you realize that you aren't the only one out there struggling. This job, with these kids is practically impossible some days. Just gotta keep trucking on, believing in their future and praying for some serenity!

And thanks for getting through my LONG story. I let it be that long because I have no doubt that almost everyone visiting my site can relate to at least some part of our experience.



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