Saturday, October 01, 2011

Is This Thing On?

Did I even post in September?

*sigh*

My official excuse: The beginning of the school year is chaotic and busy and lasts six long weeks.

The truth: Facebook ate my blog.

Oh well, where've you all been all this time? I sure do miss ya'll. Remember when we chatted everyday? What happened to that? Oh, yeah, Facebook.

Anyway, who wants to hear how the summer testing turned out?

You don't? Well, tough.

If we rewind back to late June/early July you'll remember that Jacob was unmedicated for almost three solid weeks due to four different days of testing with a new psychologist. Short back story: Jacob was diagnosed with severe ADD in April 2007 at the age of six and we've struggled with that for a while. His therapist has always believed he has Aspergers Syndrome (Google it if you're living under a rock and never heard of it) and recommended he be retested by this new psychologist. Since I'll try anything once, that's what we did.

After the testing was over, new psychologist said she'd call when she calculated the results AND when my crappy insurance ever called them. That was July 8. On September 19 I finally heard back from her. You'd think I'd be crazy pissed about that but see the beginning of this post where the beginning of school is chaotic and you'll see why it did not dawn on me until that day, that, well, what happened about all that new testing?

Fast forward a week and Kid Number One and I are sitting in her office for a 7 a.m. appointment to read our future.

You want to know what the test said don't you?

I wish I knew. New Doctor will be typing up a comprehensive (i.e. understandable) interpretation of all the raw data, standard deviations, mean, median, averages, do-a-little-dance, whatever the heck it said.

This is what I took away from it (and remember it was 7 a.m.):

(and I don't know how to make points, so we'll use numbers, k?)

1. Jacob DOES NOT have Aspergers. No way, no how, who said he had Aspergers again? Do they have a degree? Wow, no, he absolutely doesn't have Aspergers. I can't believe anyone even suggested that......as New Doctor shakes her head confused.

2. See this number here? This says he's in the 98th percentile for problem solving skills. That's great. That means he should be able to do most anything he wants to....IF.....

3. We deal with this number here....see this number? I would diagnose a child with ADHD if the score were somewhere between 70ish and 80ish. Do you see your son's number? The 4? Yeah....he scored a FOUR.

4. You realize this means he is the most severly ADHD child I have ever seen or tested in all my 32 years of doing this?

5. I mean, WOW, FOUR. I have never, ever, ever seen that.

6. And something, something about the synapses of the brain not meeting and getting where they need to be kinda like frayed electrical wires all over the place not having the outer cover of the electrical cord. Jacob's meds are like the cover of the cord, his brain is the frayed wires.

7. Oh, see here, these other numbers you can't really see through your tears and the glazed over confusion? These mean that there are TWO types of ADHD and, whaddya know? Jacob has BOTH types, BUT he's only being medicated for one. So you know what that means? You won't be able to discuss this with the overbooked psychiatrist until your December 15 appointment so we'll just hope someone cancels.

8. And did I show you the FOUR? Yeah, that means you can medicate him until the sun don't shine (which is what we actually do!) and it still won't do enough for him.

9. Because, I mean, did you see that? FOUR!!!!

10. Oh, and since his brain is basically fine and what's truly messed up is his nervous system dealing with his brain function, I can almost certainly tell you that this is a result of his very early birth, so SEE, it IS your fault.

*sigh*

We were there for an hour (did I mention it was dark outside?) and she gave me soooo much information, but since her mother is dying and she spends four days a week in Dallas, well, she didn't have the written report that dumbs it all down for a non-PHD like me. She swears she'll have it to me by Monday. We shall see.

So what I think this all means is that Jacob is very severly ADHD, both the impulsive type and the inattentive type. Currently he is being medicated for the impulsive type. The reason he is failing math, history, and quite possible language arts is because the inattentive part of his ADHD is not being addressed and, well, he's inattentive. He spaces out during the tests, forgets his books at school so he can't study, doesn't actually study even when the books are in front of him, and generally acts as if the actual school portion of actual school is optional. We can get a dopamine based medication (such as Strattera) that will supplement his Daytrana patch but he will still need to find a therapist or someone who can teach him concentration and study skills. Oh, and it might be a good idea to enroll him in public school so that he can be enrolled in Special Ed. And I really do think that's where my own head hum took over.

When (and if) I ever get the comprehensive report, I'll summarize it for you then. Are you as confused as I am?

So for now, I've talked with his teacher (whom I LOVE,LOVE,LOVE!) who is going to try to help him out with the inattentive mess and who tutors him once a week after school. For free. He's still taking the 15mg Daytrana patch plus 10mg Methyphenidate (Ritalin) to overlap those two hours the patch is kicking in. On the weekends he takes a 10mg Daytrana with no overlap pill. You should have seen our CVS bill this month.

I don't feel like I can really make any decisions until I understand it all better. I'm trying not to lose my cool with him because now I know his brain is like frayed electrical wire that isn't getting anywhere, but I do have to wonder if that FOUR really makes you mock your mom behind her back when she asks you to pick up your socks.

And Adam's teacher asked me yesterday if I had considered having him tested......

*beating my head against the wall*

6 comments:

Tracey - Just Another Mommy Blog said...

Oh my Lord. I am so sorry! For everything. For the doctors taking their time. For the issues upon issues he has. And that Adam may need extra help? That's just like... Insanity.

Jana said...

Well, you've (kinda) got some answers, right? And with answers comes solutions to problems, even if it takes forever to see the psychiatrist who can help solve them. I hope someone cancels so you can get in earlier. Until then, there's always wine.

Nurse Philosopher said...

Actually, you gave a fairly comprehensive and coherent explanation of what's troubling your son. Don't let the jargon throw you; get a copy of Taber's medical dictionary and use it. Get a Nursing 2012 Drug Book too.

It is entirely understandable if you were blown off your feet by the sudden revelation of a 2-sided kid; one side brilliant in problem-solving and the other abysmally lacking in ability to attend.

God has blessed him with great ability. Today it seems he is at the bottom of the class but things are not always what they seem. He scores far higher than the brightest kid in his class.

Am I right in thinking he hears every day from his peers about the ways in which *they* find him inferior? Unearned inferiority can hamper him for a lifetime, so teach him to defuse it early.

These are not messages you can give once and forget; weave them into bedtime stories, over milk & cookies, in the car as you drive. Find stories about people who overcame the odds to win. Even if he has your utmost confidence, he is not going to believe you for quite some time.

At home, he has begun to take a wrong direction;
"...but I do have to wonder if that FOUR really makes you mock your mom behind her back when she asks you to pick up your socks."

That kind of nastiness can come from thinking he can't get attention in a positive way, so he's learned to enjoy being the bad boy. It creates such a marvelously diverting stir at home, too. (I had a son like that.) But it has to stop.

Choose your goals wisely; do what you can, a little at a time. Try to be sure he doesn't gain by acting up. A behavioral psychologist will be more help here than any psychiatrist or pediatrician. If there is no one in the home to help you apply these goals, then find a friend, relative, or pay a helper. All you need is someone who will be on the same page with you, back up what you say, and not allow him an easy out.

About schools, I can see that for the very best of reasons you sent your children to parochial school and under most circumstances it would be the right choice. Not in Adam's case.

He is going to need the ongoing support of many therapists in order to conquer that #4. There should be no question in your mind that by sending him to where he can get a high level of help you are somehow not acting in his best interests. You are not abandoning him; you will spend plenty of time meeting with teachers over his IEP and monitoring his progress.

As it stands today he is being asked to behave in school as if the #4 didn't exist...and failing at it, and being censured for it by his peers. I'm sure it hurts a lot.

My own son had a case of pediatric depression that onset in the 4th grade, and for much the same reasons. His brain hadn't developed enough yet to allow him to read for information etc and he had fallen behind. He grew up to be one of the most highly competitive adults I've ever met so you can imagine how hard that childhood was on his ego.

I wish you success and a team of allies leading Adam toward a full life.

NP

Sadie said...

Wow. That seems both completely not at all helpful and also at least somewhat informative. I hope that his psychiatrist can get him in earlier so you can take care of the other issue. Imagine what he will be able to achieve when his nervous system does what it is supposed to do!

Miss Hope said...

Sitting here in shock. Wow. I know our battle with impulsivity is major here but to have both? BUT!!!! This means answers! Answers bring solutions and you have one in the future!!! This makes me excited for you because, dude! Answers!! Tie a knot in the end of your rope, Sister, and hang on!

Lynanne said...

I haven't commented in forever, but I just wanted to send strength and encouragement your way.

As you know, my middle son is autistic. Recently, they've added probable Tourettes and ADHD to the list. If I still had a blog, you’d read about us being slapped with the reality that he is getting worse and will probably always need special education. Last year my oldest son was diagnosed with both Aspergers and ADHD. My youngest son has learning delays and we are headed down the path of ADHD with him too. Needless to say, I can't claim to know how you feel, but I can certainly empathize. Even when you suspect a diagnosis, the reality of it can be overwelming.

First of all, keep reminding yourself that it’s not your fault. You didn’t choose or consciously cause him to be born early, nor did you do anything to cause him to be the way that he is. Mommy guilt is an evil beast.

Second, the diagnosis may be an explanation and a way to find the help he needs, but it doesn't define who he is or what his future will be. Society puts great emphasis on being "normal," but it is the individuals who defy the norms that end up being truly great (think Steve Jobs). There is a growing realization that the structure and function of the ADHD brain/nervous system has BENEFITS. These individuals often excel in certain areas. The working of their nervous system is well-suited to certain professions. Maybe it’s the cookie-cutter mindset of society that is broken, not those people?

Re: medication – maybe it can't completely alleviate his symptoms, but after trial and error (and patience and frustration, sorry) you'll find the combination of medications and dosages that HELP him function. Maybe forcing his nervous system to be completely “normal” isn’t a good thing?

Next, you are right to be wary of putting him in public school. There is the perfect world and then there is the reality of special education. Even though we are in one of the top districts in the country, that reality falls short for OUR child. It fell so short that we homeschooled for a short time (under the supervision of our child’s educational psychologist and licensed teachers provided by the school district’s home school assistance program). Guess what the educational psychologists, who are well-recognized experts in twice-exceptional education, recommended as first choice? Private school. It was beyond our financial means. I could give you reasons but this is getting long enough. Think crowded classrooms, other children with behavioral issues, and teachers short on time/resources, etc combined with a child that is struggles with focus as it is. On the other hand, special education, while imperfect, is working well for our second son. Look at all of your options and talk with other parents and professionals to help find solutions you might not be know about.