Steps to diagnosis

We have an appointment with a developmental pediatrician at Children's National tomorrow. Woot.

I also have a metric fuck ton of editing to do (yes, I now freelance, call me for all your academic editing needs), so this will be short and sweet.

An update tomorrow or Thursday. I do NOT expect to walk out the door with a diagnosis, but at least we're stepping onto the path now.

Take Me for a Ride in Your Car, Car

So one of the more interesting aspects of being an ADD mom with an ADHD kid comes to play in the car. Sam talks in the car, CONSTANTLY. Like, demanding interactive answer kind of talking. I have ADD too. Which means it is super hard for me to tune him out. Ignoring him takes about 50-60% effort level for me. AND when there is traffic, or I'm trying to find my way someplace, it really requires 100% of my attention. So what's a mom to do?

A dear friend gave me some great tools for behavior modification, but for right now, the car isn't the place to start working on those. I need a solution that will work immediately, not one that gets worse before it gets better, which tends to be the case with behavior mod. Even if the "getting worse" period is just a few days, that presents a safety risk that I am unwilling to take.

So instead we're going with distraction. This has worked pretty well so far--I tell Sam that we can't talk right now, and pass back some coloring sheets and markers. Except then when we get to our destination, he is covered with marker, the caps are all missing, and it is a frightening hassle to try to get everything all put back together. I'm looking for ways to make my life easier, not trade one difficulty for another. Sure, I can substitute crayons for markers, and I will, but there are two main problems with that--Sam will break the crayons and then bitch about it, AND he'll get tired of it pretty quickly. So I need a grab-bag of quiet, mess-free activities for the car.  Here are the ideas I have so far:

• I'm going to make a bunch of CDs with his favorite music on them so he can sing along. I can ignore singing, just not questions. 
• Some string and cheerios so he can make necklaces. 
• Craft sticks with velcro attached so he can build. 
• A cloth bag with magnetic toys inside and his magnetic fishing pole
• Various snacks

That's about all I got. Your ideas??

Playing your cards right

So yesterday I officially played the special needs card for the first time. Sam is now taking swimming lessons, and as he does with many new(-ish) physical experiences, he really needs 10 minutes or so to warm up to the idea. It's not like he'll scream and throw a bloody freaking fit if he doesn't get those ten minutes (at least not anymore), but the whole experience is just so much smoother, more productive, and pleasant for all those involved (and anyone in earshot) if he gets to warm up first. BUT. There is no "free swim time" before lessons. So I got some bitchface from the lifeguard, and I just said "My son has some special needs and he really needs to warm up to the idea of being in the water for 10 minutes or so before his lesson starts." She gave me a "what a pain in the ass" look and then said okay. I was within arm's reach of Sam at all times and made sure he didn't interfere with any other lessons.

Which is bullshit. I suspect that there are any number of kids that need some time to warm up to being in the water before they start a lesson, and there's no reason why everyone shouldn't be allowed to do that if they genuinely need it. But because we, as a society, treat disorders instead of children, having that special needs label can work wonders. It was, quite frankly, pretty awesome to be able to play that card to get my kid what he needed, no more questions asked.

Of course, it also SUCKS to label your child. Sam is SO much more than just a "special needs" label, and I'd lay money that every mother feels the same way about her child, regardless of how severe the disability.  I don't even consider ADHD to BE a disability, just a different way of experiencing the world. And so it feels really weird and awful to say "Oh yes, my kid has special needs." Even though it's true; he DOES need accommodations that most other children don't because of how his brain works. And the very fact that I feel shitty saying so is an indication of just how much stigma society still attaches to anyone who is different.  That's clearly an issue I need to work on. No parent should feel shame in asking for what their child needs.

The Long and Winding Road (to a diagnosis)

So I went and talked to the pediatrician about Sam's stuff. She suggested getting him evaluated through through the schools. I documented, got his teacher to document, and today we had his re-evaluation meeting. Well, it turns out that I documented SO WELL that a formal behavior evaluation would be superfluous. So, awesome?

I agreed that it didn't make sense to do an evaluation since it wouldn't lead to a diagnosis, and it's not like he'd qualify for services with the eval that he wouldn't now. I got the draft of his new IEP and it has some behavior-related goals on there, which is pretty much all I want out of the schools right now. So we're good. (Except his goals are kind of laughable to me. "With 80% accuracy on 4 out of 5 opportunities Sam will comply with adult requests and directions with no more than one prompt." Have you MET my kid?)

But now I'm back at square one again in terms of a diagnosis. I'm trying to get Sam an appointment with the Children's National ADHD clinic. I initially didn't want to do that because the clinic in Northern Virginia is all filled up and I didn't want to go into the city. But now I'm starting to realize that the options for getting a preschooler diagnosed are probably going to dictate going into the city.  I'm hopeful that THIS step will result in getting us closer to a diagnosis so we can start to get some services rolling.

Today at preschool pickup I had to park the car and get Sam off the playground because he wouldn't come when his teacher called him. It was embarrassing, frustrating, and increasingly common. Today I feel like whenever we make progress on these behavior issues, it is two steps forward and two steps back. I think it is time to try to figure out some new techniques.

Re-Eval

So tomorrow I get to do Sam's re-evaluation through the public schools. I spent about 45 minutes last night typing up a list of accommodations that we find ourselves making for Sam, accommodations that affect our day-to-day lives. For instance, we can't do anything before Sam has school, because he needs a couple hours to start mentally preparing himself. If he doesn't have that time, he has a really bad day at school. Its as though he needs to save up all his mental energy to focus at school, and if he needs to expand any of it to deal with anything even slightly out of the norm, like a playdate, or going to the park, he doesn't have enough to get through circle time. I would love to learn some techniques for making this all easier for him. Next year he'll be going to school first thing in the morning, which I think might also help.

Crouptastic

Last night we dropped Sam off at the childcare at the gym for parents night out. "It's a kid's party!" we told him. "No grown-ups!" he screamed and went haring off towards the climbing maze. No tearful looks back over his shoulder, no trembling parting, not even a "have a lovely night, Mother and Father." I think he may have mumbled "bye" but I can't be certain.

After a thrilling half-hour of running errands, R and I wound up at a rather unprepossessing little joint called "Kabob House." People. The food is amazing. The stewed pumpkin was, well, orgasmic. After dinner we rented an R-rated movie, watched it, picked up an exhausted but very happy little man, and came home congratulating ourselves on an awesome night for all concerned.

Then we all woke up around 1:45. Sam had this awful, horrible, barky cough, and a very frightening wheezing, rattling sound when he was breathing. Croup is scary shit, y'all. Fortunately, it is more scary than dangerous (usually. We know a darling little boy who has a disturbing tendency to wind up in the PICU with croup, but he's rather the exception that proves the rule.). R got Sam calmed down, a call to the doctor got me calmed down, and within half an hour Sam's breathing was considerably easier. R spent the whole night with Sam on his lap, while I went back to bed.

It is not easy or natural going back to bed when your kid is suffering. But I really suck without sleep. And Sam's dad was totally and completely meeting his needs. All I would have contributed would have been a fretting and increasingly ill-tempered body in the room. Whereas if I went to sleep I could provide a relief shift whenever R needed it. And I also knew that I would need to be on for tonight so R could get a full night of sleep before heading into work.

So tonight the wee little boy is tucked up into our bed, so that when the croup hits again we can handle it with a minimum of disruption to all involved. R will be bedding down in Sam's room so he can sleep undisturbed. That's how we roll.

Adventures with ADHD!

So I'm dusting off the old blogaroo, because I'm finding I desperately need a space to ruminate on what's happening in our lives right now.  I have ADD (like, I was all officially diagnosed, by a doctor, even, and not just by Teh Internets) and now it is looking more and more and MORE like the little monkey ALSO has ADD, or ADHD, or SOMETHING. God. The road to a diagnosis is rocky and long and full of comments like "You do realize all kids do that to some extent, right?" and "We don't like to diagnose at this age because they change so fast." But here's the skinny. I will never say something is WRONG with my child, because I truly don't believe that it is wrong to be wired the way we are. But my kid, my precious, smart, funny, loving, adorable child, is very very VERY clearly on a different wavelength than most of his peers. I see it. I feel it in my bones. And let me tell you, feeling that your child is different in some way than the rest of his peers is not something you make up. I adore Sam (obviously). I wouldn't change him even if I could. I LOVE the way his mind works. But I think he's in for a long, hard road through childhood, and that breaks my heart. My only solace is that all these qualities that are so difficult in childhood will make for a freaking amazing adulthood. AND that we are doing everything, EVERYTHING we can to get him help, to make his childhood smoother and easier and more fun.

Like SO many kids with special needs, Sam started off with speech therapy. I think Amy called speech therapy the gateway drug to early intervention. WOOT. And things were going pretty smoothly. Sam made rapid progress, and although he still has issues with connected speech (probably not helped by the fact that he has a sick giant vocabulary), he still met the goals on his first IEP (individualized education plan) in under 6 months. But as he started getting older, there were some definite hints that Sam, like his parents before him, marches to the beat of his own drummer. And his drummer, while certainly not aggressive or defiant, doesn't particularly give a fuck what your drummer is doing. Your drummer can play your rhythm and his drummer will play his rhythm, and can't we all just play different rhythms and get along? This is Sucky Fact about ADHD #1: No, we can't. Our school system isn't set up that way. The most you can hope for is to be able to experiment around with subdivisions, but you must stay on the beat. Sorry my piglet. It sucks, and it shouldn't be like that, but that is the way the world works.

So right now we are going through the public schools to get Sam evaluated so we can formalize his need for services. I'll be getting him appointments with some specialists to rule out other disorders and try to get a diagnosis so we can get access to services. We're documenting like crazy so that when we finally do get in to a medical doctor I can show that he's had these behaviors observed at both home and school for well over six months.

People, I put together a list of traits my kid has that are "very unique" and it was two-and-a-half pages. I've had outside people confirm it is an accurate list. That shit is NOT neurotypical.

Before I get any hater comments, I do NOT plan on using meds with Sam, at least not in the near future. Although I believe that there are occasions when all other options have been exhausted and meds are needed, we are not even CLOSE to that point. Also, research is coming out that is pointing to meds being a short-term fix. And I get, I really, totally, get that there are times when you need that short-term fix. School is not something you can afford to fail at. Having a semblance of a normal social life in childhood is not something you can afford to fail at. But I think learning behavior modification is a long-term fix, and that's where I want to focus with Sam. Right now, he needs his environment to do the majority of the modifying. As he gets older and more self-aware, we'll transition that responsibility on to him.

So I'm going to use this blog to record our journey. At some point, with Sam's permission and way in the future, when our journey of raising him is mostly done, I would like to write a book about what it is like being an ADD mom parenting an ADD kid. I have so many advantages, because I get where he is coming from. And I have so many disadvantages, because I need to set things in place for him that are as difficult for me to cope with as they are for him.