Wednesday, May 16, 2012

Hodgepodge

Well. I've been gone for a while. We were running around dealing with occupational therapy and wondering whether or not Sam had some sensory issues. Long story short: Yes. Yes he does. It appear that about half of kids with ADHD also have some sensory processing issues as well, which ... is complicated. Sensory processing issues can look just like ADHD, but sometimes they co-exist, and sometimes they are mistaken for each other and ... you know what? I don't entirely understand it 100% myself. But the kind woman who evaluated Sam for SPD (sensory processing disorder) said her feeling was that he had some of each. I guess one of the big hallmarks of ADHD vs SPD is that the purely SPD kids will, occasionally, shut their mouth. As opposed to ADHD kids, where I frequently feel like my ears are going to spontaneously hemorrhage blood and brain matter towards the end of the day. I mean, what he is to say is interesting for sure, but MY GOD the talking is nuts. And I have a fairly high threshold for that kind of stuff.

But that's not actually what I want to write about today. The mister and I have gone on a liver-cleansing diet due to some health issues the mister is experiencing. A major part of this diet is giving up dairy. I've been sort of inching closer to this for a while. You'd be surprised, though, at the societal pressure to not stray too far from the norm when it comes to diet. Go vegetarian and you'll get some teasing. Go vegan, and people start getting uncomfortable but QUICK. Not everyone, of course, Not even most people I know. But some people, for sure. In fact, my own husband told me at one point that he would no way, no how support me going vegan--it was just too extreme and weird for his comfort level.

Then we gave up dairy for the sake of his health. And people. I have lost 7 pounds in 10 days. I feel SO. MUCH. BETTER. And after seeing me, my husband said "You needed to give up dairy. I completely support this for you. To see you looking and feeling so much healthier is totally worth it." I've also given up most processed foods. I'm basically trying to aim for eating raw fruits and vegetables for about 40-60% of my diet. Both of us have lost weight, but we've also lost INCHES. When you learn about the inflammatory effects of dairy and sugar, it's not really that surprising that we're seeing such a dramatic difference in such a short time.

There's that line that goes "Nothing tastes as good as being skinny feels." Which, to me at least, is kind of bullshit. I can think of a TON of things that taste as good as being skinny feels. But for me, nothing tastes as good as being healthier feels. Which isn't to say I will eschew all processed foods and sugars for the rest of my life. But seeing how incredible I feel cutting those things out of my life? It makes it so much easier for those things to be special, exceptional treats. Although to be honest, the idea of fast food and chips is just really quickly loosing its appeal.

Am I making this dietary changes for Sam? Not yet. At some point we very likely will experiment with elimination diets to see if cutting out dairy or gluten makes any difference in his behavior. But at this point, I honestly consider his eating to be pretty disordered (in terms of the fear and distress he exhibits around new food), and I want to fix that first. I don't want to encourage him in any way to give up any foods at this point. If a PROFESSIONAL who has evaluated him tells me trying an elimination diet will help at this point, I'll do it, but the issue is really closed for discussion from the peanut gallery. I mean, dude. My kid can't even HOLD a carrot without hyperventilating, let alone think about eating one.

Wednesday, April 11, 2012

Normal is boring, right? RIGHT???

So I am officially giving up home-based feeding therapy. My child will starve himself rather than eat pizza without pepperoni. He cried last night when I asked him to try a french fry. Going to other friend's houses is dicey: if they have little tiny ones I can usually count on there being something for Sam to eat, but otherwise I haul in my own food for him, mostly consisting of macaroni and cheese packets.

The constant fighting to try to get him to try new foods is exhausting, and it doesn't seem to be working. I've tried "chaining" food, and we make no progress. We were making some good progress with tolerating new vegetables on the plate, but it pretty much stopped there. I could get him up to licking the new food but no further.

It's the anxiety around food that is worrisome to me. He's not just picky--he has a clearly defined set of allowable and non-allowable foods, and attempts to add to that list bring about some pretty severe reactions. I know that lots of parents think you can just ask them to try a new food and as long as you keep presenting it that everything will work out, but dude. We are not there. We haven't been there. We've been working towards that for like, four years. And I. Give. Up. I am out of my depth with this.

Sam has an evaluation for occupational therapy in May, and they assured me that feeding therapy can be part of that. I've always thought he doesn't have sensory issues informing his feeding problems, because texture doesn't seem to be a problem for him. But there is something off about his reaction to food, and man. I just want someone professional to either say "This is all in your head, he's a picky eater and he'll grow out of it and he's fine" or "Yeah, you're right, he needs some help with this issue and here are the tactics we can use to help him."

Part of having a kid with special needs is you start to see everything through the special needs filter. Is he just a picky eater who gets dramatic about being asked to try new foods or does he have Food Issues? Is he just a kid who laughs at things that aren't that funny or is it Inappropriate Laughter? Does he just like to dance and contort his body or is he Having Sensory and Proprioceptive Issues? Sometimes I feel like I don't even know what "normal" looks like anymore.

I'm really looking forward to getting him into OT so we can figure out what we need to work on with him and what is just a normal part of being four.

Tuesday, April 10, 2012

Oh hai.

So instead of blogging I've been editing academic dissertations, which is evidently my new job. I've been trying to build up a freelance business for a while now and I feel like I'm starting to reach a tipping point where I can actually say "Why yes, I'm a freelance editor specializing in dissertations" rather than just every so often editing a dissertation for a friend of a friend. It's kind of awesome, because I love editing, and it is nice to have a little extra income, and it does my ego good to be considered an actual editor adult-type person. But on the other hand, being a Work Out of Home Mom kind of sucks. I like using my brain, I  like that my son sees me doing some productive work and sees me being a professional, but I hate spending so much time ignoring him while I try to meet a deadline. Clearly I need to do some work on finding balance with that. I try to do most of my editing while he's in school or on weekends or after he's in bed, but there inevitably comes the days when I'm trying to wrap up a job and the poor child is plunked in front of the television for four straight hours.

Yesterday I just threw him out in the backyard with a squirt bottle full of water and some kid-sized gardening tools and let him do his thang. It was great. He came in covered in dirt and starving. I'm hoping with the gorgeous weather we've been having that I'll be able to exercise this option considerably more frequently than the tv option.

Today he goes back to preschool after his weeklong spring break, and we'll see how that goes. We've been doing a lot of work on "good choices vs bad choices," which is something he really seems to respond to. Although he's been telling me that he's going to make bad choices and then change them into good choices. I'm trying to figure out a way to communicate that while it is always okay to make mistakes and that it is wonderful to catch yourself in the middle of a mistake and change course, it is not acceptable to set out to make a bad choice. Sigh. This kid is too smart for his own good sometimes. He can always find the loophole in any rule.

Thursday, March 29, 2012

Don't rock the boat, baby, don't rock the boat.

So the little man seems to have hit his stride at school. I mean, it only took six months, but hey, who's counting? If he does well today he will have had two straight weeks of excellent days. Which I do not think has EVER happened. So what are we doing to achieve this magical event?

Sam goes to school with a LOT of extras. He has a special sit-upon cushion which provides some additional sensory input. He gets to hold a koosh ball during circle time to help calm him down. He has a series of charts that help give him some external order throughout his day. His awesome awesome awesome teacher Miss M. comes to school with him one day a week to help him focus. He has a sorting game for good choices and bad choices. We talk about when choices are hard and who he can ask for help. I'm giving him ridiculously expensive Omega-3 supplements because there's increasing research that indicates that may have a beneficial effect for kids like mine.

I'm not under the illusion that we've "fixed it" and it will be smooth sailing from here on out. Sam is a major limit-tester--he doesn't do it to be defiant or rude, but more like out of scientific curiosity. He is always going to have days when he wants to push the envelope and we'll have to smack him back down (metaphorically) so he knows exactly where those boundaries are. As he gets older I'm hoping it will be easier and easier to channel that tendency into more productive pursuits. We're already starting to do some "science experiments" around the house and I think I need to really buckle down and dedicate one day a week during the summer to those kind of projects.

Thursday, March 22, 2012

Running might be your Prozac, but PROZAC is my Prozac.

So the whole fam-damily headed off to the gym on Sunday, to dump the little man in the kids center where he could run wild and scream at girls ("LOTS of us boys were doing it, mom. We thought the girls were ants.") and his father and I could hit the pool. On the way in I saw an SUV (because mini-vans are just so uncool) with this bumper sticker: Running is My Prozac.

Which. Like. Well. Yay for you. Seriously, I'm not being sarcastic there. If you can manage your mood through diet and exercise, that is great. That is WONDERFUL.

BUT. It doesn't work like that for everyone. Don't get me wrong, I absolutely use diet and exercise to help manage my depression. They make a HUGE difference. But unless I'm also taking the meds, I can't function at a high enough level to manage my diet and exercise. Hell, I can't function at a high enough level to do laundry. (Although sitting on the couch and watching The Real Housewives of Orange County and silently sobbing didn't seem to pose much of a challenge, oddly enough. (I lie. It was Wife Swap.))

And while I totally support the idea that there are a lot of steps you can take to help manage mental illness, I get so leery of bumper stickers like "Running is my Prozac," because part of me feels, rightly or wrongly, that it implies that if one tried a little harder one would not be depressed. Maybe if you just got more exercise, or helped others more, or went to church, or were a better fucking person you wouldn't be such a sad sack of shit all the time. And although I have no reason to think that is the message behind sayings like "Running is my Prozac," I think a lot of people take that message away, and it is not helpful.

Depression is not a reflection on who you are. It is not necessarily caused by an unhappy childhood, or unresolved issues, or being a repressed housewife. Sometimes it is just brain chemistry.

Wednesday, March 21, 2012

Miscellaneous.

So the last couple weeks have been, I don't know. Busy. A little nuts. Sam probably has a malfunctioning ear tube, so he's been murderous at school (ha ha, not really. I think the only thing he murders is his teacher's will to live) and a poisonous devil at home. Then we started bribing him with peanut butter eggs if he takes his ear drops, and suddenly all is well again. He heads to the ENT on Friday, and I have the sinking feeling we are going to have to replace at least one of those tubes, DAMNIT.

He went to the dentist on Friday, and I was expecting Sam-hijinks. But he was a MODEL patient. He held still, opened his mouth wide, and was great. It certainly didn't help that our hygienist was unbelievably good with him. She knew EXACTLY what he needed. It was amazing. I did some major prep work, talking a lot about the dentist and making a plan--he wouldn't have to lie down all the way in the chair, he could sit on my lap, he could wear sunglasses so the light didn't hurt his eyes, and he could hold a new angry bird plush that he could keep ONLY if he was a good patient (or at least gave it the old preschool try). But he really surpassed all my expectations. The only snag was when he puked because of the fluoride treatment. Next time I'll remember to bring another shirt to the office.

Friday, March 9, 2012

10 pounds of awesome

Having a child with ADHD is kind of like having 10 pounds of awesome in a 5 pound bag. Or, in our particular case, 66 pounds of awesome in a 33 pound bag. Yeah, there are times (a lot of times) when trying to contain all that awesome in a bag too small is a pain. You are scrambling around, picking up spare pieces of awesome here and there, trying to shove them back in the bag, trying to convince the bag it is time to hurry up already people are looking at us. There are often forgotten bits of awesome strewn about the house and left at the neighbors and the friends. All that awesome spills over in school, when the bag is supposed to be sitting still, neatly containing what you know is impossible to contain. There is no doubt it can be a gigantic pain in the ass.

But the thing about it? All those random pieces of awesome floating all over the place and complicating your life? They are made of awesome. Having a child with ADHD means you are never, ever, EVER bored. You learn more than you ever thought possible, not just about yourself and your parenting skills and stretching your limits and all that jazz, but about whatever insane thing your child becomes obsessed with this week. You learn because your child just will not take "I don't know" for an answer, and while that is not always ideal before you've had your first cup of coffee, it is a wonderful and amazing thing to discover new worlds with your child. ADHD kids are likely to approach things from a different angle, noticing things other kids might not, making new connections.

ADHD kids won't sit on the couch and cuddle with you quietly while you both enjoy a movie. They'll ask for a movie to go on, then grab their toys and act it out right along with the screen, often improvising and adding new details. You'll always know who is talking, because they have different voices for each character.

Your ADHD child probably won't color inside the lines. But they'll amaze you with their artistic vision. They are the innovators and the improvisors. They might not follow directions to the letter, but what they come up with is often astounding in its difference and creativity.

Make no mistake--ADHD is a gift. Unwrapping that gift is often messy and hard, leading to cut fingers, tears, and a lot of frustration as you figure out how to get past the paper and reach the child inside. But WOW. What's inside is amazing.

Thursday, March 8, 2012

Stop me if you've heard this one before...or the curious case of behavior deja-vu.

So we'll go along for a few weeks at school with Sam's behavior being "okay-ish." Not especially great, but also not especially bad. Then he'll have a few really good days, and I'll start to think one of two things: A--we've got this whole thing figured out, and I am such an amazing mother for getting my child what he needs to really succeed; and/or B--maybe we were all over-reacting, and he doesn't really have a problem after all. He's just spirited, but now he's getting the hang of it (side note: if it is MARCH and your child is still working on getting the hang of it please to talk to your doctor objectively about possible behavioral issues.).

Then he'll have a couple really bad days. Days when the future looks so dark for both of us, because he just cannot do school things in an appropriate fashion. Things like sitting down for 10 minutes. Things like working on an art project, or waiting his turn without giving up on the whole idea and finding something totally different. You know, things like focus. Persistence. Self-control.

Today I forgot Sam's awesome air cushion, which is supposed to provide sensory input. To be honest, I don't understand the reasoning behind it 100%, but it has a success rate of about 75-80% with my kid, so we use it. Except today. So of course he had a bad day, earning an actual frowny face for his second circle (story-time), a frowny face his teacher hardly ever gives. I guess he was hiding under the table the entire time. JE. SUS. CHRIST. Or, as we sometimes say around the little man, CHEEZITS. Dad gum.

I know, I really really do, that this is a long-haul process. But sometimes it can be dispiriting to know that a single dropped component sends the gears screeching to a halt.

On the bright side, I told him that if he lines up on the playground without being asked more than once 4 days in a row he would earn the Mighty Eagle setting on my Angry Birds. That worked like a motherfucking charm.* So now he's going to go 6 days in a row (which translates to 3 weeks) to earn another app.

*No, I don't know why telling him he needs to line up doesn't work. Threats don't work. There is basally no punishment severe enough (outside of like, beatings) to overcome the momentary thrill of exercising that power on the playground. But positive rewards work, as long as he wants them badly enough.

Tuesday, March 6, 2012

Discipline, rights, and privileges

I've been hearing from a few different sources about what may constitute appropriate rewards for a token economy and this concept of special time with parents keeps coming up. And I've got to tell you, it raises my hackles. If this works for your children, in your family, that is awesome. As I've said before and will no doubt say again, just because something is wrong for my family doesn't mean it is wrong for your family. And to me, the idea that a child needs to earn the privilege of spending special time with his parents sets off the kind of deep, bellowing alarm bells every mother knows not to ignore.

To me, there is a big difference between special outings and special moments. A trip to the movies? Sure, that can be earned. Chuck E. Cheese (or as we refer to it, The Hideous Rat) or a dinner out at a favorite restaurant? Absoulutely. Things of that ilk can be put firmly into the category of "privileges Sam earns for good behavior."

But reading a story with me? A walk on a spring evening? Heading to the farm to see newborn animals? Going to the creek to see the first bluebells? Catching fireflies with his father on the first summer nights? These are the rights of childhood. I will not make these experiences conditional on behavior. Obviously, if his behavior is atrocious I might elect to postpone these, but he doesn't need to earn these. Spending special time with your loved ones is unconditional in this family. You don't need to be good, or smart, or funny, or obedient, or having a good day to participate in family life. These activities are ones that nourish our souls and replenish the wellspring from which we draw on in times of stress and trouble. I will not ration my son's childhood.

Thursday, March 1, 2012

Doctor, Doctor, give me the news

So we went to Children's National Medical Center yesterday, which kind of rocked. Except for the horrifically long wait, but I always pack for bear when going to a doctor's office, so that didn't really bother me. I really liked the developmental ped we saw. She was personable, had great rapport with Sam, and told me exactly what I wanted to hear in terms of her reliance on meds--that they can be incredibly helpful, but tend to be a short term fix, and behavior modification is at least as important. Also that it would be inappropriate to drug my preshus baybee at this point on the game.

As expected, we did not come away with an official diagnosis. Other than her official diagnosis of "a delightful child, and clearly extremely bright." That's right. It has finally been declared by a disinterested third party. He is delightful. But in terms of his Very Unique Qualities, she said he was showing characteristics of both ADHD and some sensory issues. She suggested occupational therapy, and we'll come back for a follow-up in about six months, after the school year starts next year. We're on the road to getting Sam an official diagnosis by the time he's in kindergarten.

The good news is that we are fully on track in terms of getting him the services he needs. The doctor said she actually didn't have much she could tell me, because I was already doing so well with him. She was impressed at how well I understood Sam and his issues and how well I manage them. Which is the significant upside of being a mother-child ADD pair. I get him. I never look at him and think what the hell is going on in your brain? At least not more than most mothers do. I mean, I ask that when he tells me that my new! precious! exquisite! candle smells like Angry Birds. (It does NOT. It smells like Tuscan Blood Orange! And spring! and cleanliness! And LUXURY!) But when he's doing his Funky Stuff, I know what he is going through. I'm able to do a lot of the things he needs because they are the same things that I needed when I was a child--and often the same things I still need today.

Which is hardly to say I am a perfect mom. Just because I know ADHD intimately does not mean I don't also get overwhelmed with what it means to parent a child who is so much more intense than his peers. I lose patience, and I yell, and I let him get away with things he shouldn't sometimes because I am just so damn tired and I don't have the energy to deal with it. I try to let that happen as infrequently as possible, but I think the vast majority of parents have times when they pretend they don't see something because they just cannot deal with it. Not don't want to deal with it, but can not.

In other news, we are getting Sam the Man his new twin bed this weekend. I earned the money for it all by myself with hours and hours of painstaking editing. I am a mother who slaves away for my child's benefit. You know, in my pajamas, but still.

Tuesday, February 28, 2012

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.

Wednesday, February 22, 2012

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??

Sunday, February 19, 2012

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.

Tuesday, February 14, 2012

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.

Monday, February 13, 2012

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.

Sunday, February 12, 2012

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.

Friday, February 10, 2012

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.