Friday, April 8, 2011

Next Steps

I'm a mom, first and foremost. And as a mom, I worry about my kids. It's kind of my job, along with making sure they are safe, happy and taken care of. But when your kid has issues like mine has issues, that worry can kick your ass.

My kid is severely ADHD. He's also diagnosed ODD (Oppositional Defiant Disorder) and SID (Sensory Integration Disorder, aka SPD (Sensory Processing Disorder). ODD is very commonly found as a comorbid diagnosis with ADHD. In my opinion, it's also a very harmful diagnosis to acquire, or at least it can be.

Why, you ask, is ODD a harmful diagnosis? Just read the two major players in the name of the disorder. OPPOSITIONAL. DEFIANT. Pretty negative way to describe someone, isn't it? Do you feel sympathetic to someone who is labeled oppositional and defiant? Does it make you want to help them? Or do you find yourself looking at these oppositional and defiant people as troublemakers and people who are going to cause problems for you?

Long ago, when I first started this journey with my child of trying to help him with his issues, I decided that whatever labels were given to him were fine by long as they help him get the services and assistance he needs. Read that again. As long as they help him get the services and assistance he needs. What I've found is that a diagnosis of Oppositional Defiant Disorder gets him nothing but looked upon as someone who is, by definition, oppositional and defiant, and by extension, a troublemaker and someone upon whom many, many things can be blamed.

Here is the definition of Oppositional Defiant Disorder:

* Actively does not follow adults' requests
* Angry and resentful of others
* Argues with adults
* Blames others for own mistakes
* Has few or no friends or has lost friends
* Is in constant trouble in school
* Loses temper
* Spiteful or seeks revenge
* Touchy or easily annoyed

Am I saying that my child does none of these things? No, clearly he does them or he would not have qualified for this diagnosis 5 years ago. But as a layperson, teacher or someone otherwise involved in my child's life in a non-medical, non-psychological way, having a child labeled ODD is harmful. Humans as a rule want to put people into metaphorical boxes so that we understand how each person is "supposed" to act. When you expect someone to act a certain way, you start looking at their behavior through that lens...and it can very easily become habit to look for the negatives, or even the not-good-enoughs, instead of seeing the efforts that person makes, and even the good behaviors, outside of the label you gave them.

Right now, my child is facing a diagnosis of depression, an adjustment disorder w/depression, and maybe an anxiety addition to ADHD, ODD and SID. He's 9. I am worried for my child.

He doesn't want to open up and talk about his peer relationships with his therapist, the person who did the extensive testing back in March, or even with me. That's new...and it's weird. So says me...and the professionals. Hence, the adjustment disorder. He is clearly going through some emotional trauma and feels unsafe or upset talking about his friends, or lack thereof. What was the impetus for this? I can guess it was something that was fairly devastating to him that happened a school a while back. I could be wrong.

I love my kid. My kid is a pain in the ass. My kid is a stellar little guy with a HUGE heart and a great smile. He has a special ability to piss people off. I'm glad for the person he is, and I sincerely hope that his trials at such an early age will make him stronger, not broken.

The next step is a meeting with all professionals involved in his treatment so we can brainstorm and come up with viable treatment options, be they medical, pharmacological, or therapeutic in nature. In addition, at the end of April, our wonderful psychologist will be accompanying my husband and I to an IEP review/revision meeting at the school to talk about the results of the testing done in March, and what the resulting changes in his IEP will be. After that? No idea...I just know that we will keep plugging along, trying to help him as much as we can.

Friday, February 4, 2011

Some good ADHD resources

In response to some events that have happened at school recently with M, I find myself back in the research game. It's been a while since I've done the type of in-depth research I'm doing now, and while I'm doing it, I might as well share the resources I have found! I'll certainly be sharing them with the school...

Dr. Russell A. Barkley click here for his website is one of the foremost researchers in the field of ADHD studies. He's been doing this since the 70s I believe, and has a website absolutely full of information that is useful.

Specifically, I'd like to draw your attention to these items:

*The Importance of Emotional Impulsiveness in ADHD: Implications for Diagnosis and Management (VIDEO of a lecture, lasts a little over an hour)

*ADHD Fact Sheet

*80+ Classroom Accommodations for Children and Teens with ADHD

*The Important Role of Executive Functioning and Self Regulation in ADHD

In addition to this new and interesting research into ADHD, I'd also like to point your attention to Sensory Processing Disorder (also called Sensory Integration Disorder). I have another blog I'm writing called Shorty Got to Move, and it's about our journey with a child who has ADHD, ODD and SID.

M was diagnosed with SID back when he was 6 I believe (he's almost 10 now). We noticed that he liked to crash into walls, doors, people, etc; and had some other behaviors that we now know are "sensory seeking" behaviors. We did some work with an Occupational Therapist over that summer almost 4 years ago and stopped doing it for some reason or another...I really don't remember. Fast forward to now and we're doing OT again.

We started going back to OT not for the sensory issues, but actually at the behest of our new therapist for something called The Alert Program. This is a pretty cool program that teaches kids ways to get their "engines" running at a level that is appropriate to the situation in which they find themselves. It's 2 fold though - not only do they learn to self monitor AND self regulate their "engines," they also learn, through the use of 2 way headphones and music, to focus the brain on the appropriate sound. The headphones have music streaming in, but during the OT session, the child has to make himself focus on the OT's voice instead of the music. It also activates the hairs in the ear canal.

As far as the sensory issues go, M is still a sensory seeker. Though the OT says that the sensory part is probably very small in the scheme of things, getting it under control through a sensory diet, fidgets and other means, may help M feel more in control at school and at home. We will will be a week or so before we get the diet.

In any case, I highly recommend Dr. Barkley's site.

Sunday, January 16, 2011

I never knew

how challenging it would be to be a parent.

I never guessed there would be this much heartache involved. This much soul wrenching pain. Really, I never guessed.

My older kid has been going through some stuff these past few days, and I...well, I don't know what to do anymore.

He's severely ADHD, with a side order of sensory processing disorder. To most people ADHD means that the kid is a hyper pain in the ass. But that is SO not all of it. Yes, my kid is hyper, but what lots of people don't understand is that there are sooo many other things involved. Impulsivity to the point of truly not being able to control yourself at times, poor planning, lack of inhibition, lack of forethought...and my beautiful child exhibits most of these things on a daily basis. And it hurts him. And I hurt for him.

We're also learning (again) that his sensory processing disorder really does have an impact on his behavior and ability to be in control of himself. At the suggestion of our new therapist, I made an appointment to have him re-evaluated by an Occupational Therapist. And the things I thought had gone have simply morphed. Loud noises still bother him, he still seeks sensory input in ways that most kids don't, and some other stuff that I can't think of right now. But all of these things, on top of the ADHD, are really impacting him - academically and right now, maybe more importantly, socially.

This is not a kid who seeks solitary activities. Oh no - this is a child who want, no NEEDS social interaction with other kids. But what he's finding out is that because of things he's done recently and in the past around the neighborhood, kids either aren't comfortable with him being in their house or playing with them, OR they simply won't play with him anymore.

He's 9, but he's making the mistakes a 6 or 7 year old would make. And it's not because he's a horrible, malicious child. When he's "on", this child is a ray of sunshine. He's helpful, wants to please everyone, playful, etc. But most people can't see past the things he is having trouble controlling...taking things that aren't his, playing a little too roughly, lying, etc. Hubs and I are at a total loss as to why he continues to do this. Intellectually he KNOWS these things are not ok, but I honestly think he simply can't stop himself from doing them. And it really fucking sucks.

Last night I had a dream about leaving...just leaving and starting fresh somewhere new. Today, I guess hubs was in a pissy mood because I'd been working all day, so he'd been taking care of the kids, they weren't listening and he yelled at the kids. They both cried and ran upstairs. Little one comes down and tells me big one just wrote a note saying he was going to run away. My sweet baby was feeling so low about himself and his situation that he wanted to RUN AWAY. I know that's probably normal kids behavior at some point. Hell, I remember doing it...but as a parent, it's frightening. So I gathered him up in my arms and told him that my heart would break into a million tiny pieces if he ever ran away, but I also told him that I totally understood his want to remove himself from this difficult situation he's gotten himself into.

I can't tell you the number of times I've told him to stop lying, taking stuff, etc, punished him, given him consequences, etc...he knows all this, yet keeps doing it. A book I'm reading says to let him suffer the consequences of his own mistakes, especially when he's young. The cost will be lower now that it would be learning these lessons at 25. But what if he doesn't learn these lessons? What's his life going to be like? Yes, I borrowing trouble by trying to look ahead. And honestly, I usually don't because my outlook on what his life will be like seems to change minute by minute. But tonight, my kid said he wanted to run away.

I'm feeling pretty sad tonight. Troubled.

But tomorrow I'm going to show my kid that staying positive is possible, even when things get rough. That people WILL forgive him his trespasses if he tries to show them that he's sorry. I am going to try very hard to change my parenting and see if I can help him become as good on the outside as he is on the inside by modeling the behaviors better that I want him to mimic. And mostly, to help him figure out that he is a good and worthy person, no matter what he's done in the past.