The Boy’s Disability

Welcome to Hell: ADHD and Valentine’s Day

Posted on by Beth Caldwell

I fucking hate Valentine’s Day. And not just because it’s the absolute worst night to try to go out for a romantic dinner, because everyone’s favorite romantic restaurants are overcrowded, noisy and completely unromantic. Or because it’s yet another way for corporate America to convince my poor husband that he’s gotta buy me crap I don’t need. No, what really makes Valentine’s Day the 5th layer of hell is that The Boy has ADHD.

They key area where The Boy continues to struggle academically is with writing. He’s excellent at story-telling and super creative, but actually putting pen to paper and getting those ideas out is REALLY FUCKING HARD for him. Like, in a 20 minute writing session in class, he’s lucky to get 2 sentences written, with close to one-to-one support helping him focus and stay on task. And that’s an improvement–it was much worse last year before he started on the ADHD meds.

So now think this through: there are 24 kids in his class, him and 23 others. That means on Valentine’s Day, he’s got to write up 26 valentines. To Billy, From The Boy. To Megan, From The Boy. (These are not real names, I’m not an asshole.) Just those two cards are gonna take him for-freaking-ever. And we’ve still got 21 more to go, all the while with me doing whatever I can to keep him on task.

This year, the assignment for his class was so beautiful, and so in line with the values our school is trying to teach our kids: instead of just commercial cartoony valentines, they sent home note cards, and asked our kids to write compliments about the other kids, and then color the cards, to go in a nice booklet that each kid will get. Isn’t that beautiful? This is why I love our school staff, the compassion they demonstrate and that they work to instill in our kids is amazing. I’m picturing the wonderful book my kid will get, and how much it will boost his self esteem to hear his peers saying nice things about him. I love this idea and the kindness behind it.

But let’s pause for a moment, and think about what this entails for The Boy. He has to think of a compliment for each kid (which is by far the easiest part–he loves the kids in his class), write the kid’s name on the card (“To Suzy, From The Boy”) AND then write a whole sentence compliment. And then color a picture on each one. Times 23.

It took him an hour to write 3 cards and color one. An hour. And that was with us sitting with him the whole time and doing everything we could think of to keep him on task.

At this point, I decided we needed to try a different tack. I stopped to think about what the goal of this assignment was. Was it to get him to write everything because he needs to practice his writing, or was it about telling his classmates what he likes about them? Or was it both? I decided that maybe if we broke the two tasks up, we had a better chance of getting through them.

So, I sat down with him and my iPad and the list of kids in his class, and I had him tell me the compliment he wanted to write about each one, and I typed them up for him. That took us about 15 minutes. Then we printed the list out, and we let him look at it so he didn’t have to both think up what to say AND write it out at the same time. He could just copy the words he had already come up with. This definitely sped up the physical writing process–since he didn’t need to think about what he was going to write AND write it at the same time, he got the cards done faster. Not fast by any stretch, but faster. His teacher also offered to let him and his classmates work on the cards in class, if they were going to need extra time to finish them. (Again, LOVE our school staff. They do the things that need to be done to support The Boy and other kids whose brains work differently.)

I know that typing up his ideas first feels a bit like cheating on getting him to figure out how to spell things. But fuck it, that’s the only way this project was getting done in the roughly 10 days we had to finish it. I’m not kidding. Maybe if we’d gotten the assignment sometime before Christmas, we could have made this happen the way other kids can do it. But when writing is a struggle for your kid, you have to make concessions on this stuff. It’s just not right to ask a 7 year old to put in that many hours of work. He needs time to just be a kid and have fun, like his non-disabled peers do. In fact, maybe even more so, if you read the studies on physical activity and ADHD.

The miracle is, he DID finish all the cards on time. I’m really proud of how hard he worked. Maybe some other families might look at his atrocious handwriting and just think he wasn’t trying hard, but if they could see just how much effort he put into this project, they’ll realize that those cards show just how much love and respect he has for his classmates.

So, if this year your kid gets some valentines that look like crap, or were clearly not hand-written by a kid in their class, please don’t poo-poo them. They probably reflect more thought and effort than you realize.

Your IEP Team Doesn’t Hate Your Kid

Posted on by Beth Caldwell

You guys, we’re coming up on annual IEP review time for my kid, and maybe for your kid too. And so, I have something I want to say that might piss some of you off if you have a kid with a disability. But as a blogger I follow said recently, if you don’t like it, then off you fuck.

In all my years working in the field of special education law, I can count on one hand the number of times that I met teachers or other school personnel who hated kids with disabilities. Sure, every profession has its sociopaths, but the pay in eduction is so low, and the amount of power wielded is so small, that sociopathic special education professionals are pretty rare.

And yet, I can’t even begin to count all the parents I spoke to over the years who were convinced that the special education staff at their school hated their child. Because, the parents would ask for something that they believed their child desperately needed, but the staff would refuse to do it, or fail to do it. What other explanation could there be for school staff to refuse help to a struggling child? It must be hate, right?

No. No no no no and no. Just, no.

And this is a huge problem, because if you jump to the conclusion that hate of children with disabilities is the driving motivation behind a teacher’s actions, you’re not going to be able to overcome the real challenges that are preventing that teacher from helping your child. You’re also likely to say something in anger about that imaginary hate that will ruin your relationship with the person who is taking care of your child 6 hours a day, 5 days a week, 9 months a year. Which is a really bad thing. Trust me on this.

So, let’s talk about what might actually be going on, and see if we can get around the problems to a solution, shall we?

1. Schools are fucking broke. This is first on my list because it’s definitely the #1 reason that I came across when dealing with conflicts between parents and schools. Schools are so broke that there have been court decisions in several states, including mine, saying that the state’s underfunding of schools is illegal. There’s a reason why your school’s PTA is always asking for more money: they need it just to keep the school afloat. Lots of schools are cutting staff positions in areas that particularly hurt kids with disabilities, like school counselors, occupational therapists, and nurses. On top of that, the federal funding out there for special education still doesn’t cover the whole cost of educating kids with disabilities. Shit’s fucked up, man, and none of that is because your kid’s teacher is an asshole. It’s because politicians aren’t doing their jobs.

That said, federal law doesn’t allow schools to deny services that kids need to receive a free appropriate public education just because a school is broke. So, if there is a service in your kid’s IEP or 504 plan that they aren’t getting and the school uses “we’re broke” as an excuse, I mean, I’d politely call BS on them. I’d also be first in line to help organize a fundraiser, because again, it’s not the school’s fault that they’re broke.

My son’s school is in a crazy affluent neighborhood that I don’t live in, and our PTA raises a crapload of money compared to most PTAs, some of which goes to things like extra help for kids with disabilities or other learning challenges. If your PTA isn’t spending at least some of its money on services for kids with disabilities, who are some of the most vulnerable kids in school, your PTA needs to be educated about why they should start. Remind them that things that help kids with disabilities also help other kids too–a school counselor is a good investment for all kids. Same with a nurse, an instructional assistant, etc.

2. They don’t know what you know. You know your kid better than anyone, even their teacher. Don’t withhold information about what’s going on in your kid’s life, or what tricks work on their problem behaviors at home, or what areas of struggle you’re seeing when they do homework. How can they help if they don’t know the whole story?

So, tell them you have cancer and your kid is scared about his mom being sick, and it’s making it hard for him to focus. Give them a copy of the allergy testing that shows what foods are dangerous. (I can’t tell you how many times parents refused to do this. It’s the dumbest self-sabotaging behavior I can think of.) Explain how hard it is for your kid to understand the word questions on his math worksheet and that it takes him 20 minutes to do 2 word problems. Bombarding them with dozens of emails isn’t helpful, but sending relevant information (and with a “Thank you for working so hard to help my kid” at the end of it) will help the teacher help your kid.

3. They don’t know the rules. And often, neither do parents. Because they’re complex and they change whenever new laws or regulations come out, which happens every so often. And because it takes time for new people to learn the ropes. I had a colleague who once told me that whenever there was a change in his state’s public employee pension plan that would encourage people to retire, he scheduled extra trainings for school personnel on disability laws. He said that sometimes he’d suddenly see a huge increase in complaints from parents, and he realized it was happening after the old hands left with their years of accumulated knowledge, and new people came in who didn’t know the ropes yet. (That guy is a genius.) In addition, lots of times parents think their child is entitled to something they’re not actually entitled to. Remember, schools are broke, and although they want to help your child, they probably aren’t going to be able to provide extras that aren’t legally required. They just don’t have the resources for that.

So, invite in an expert to speak to your school’s staff about the rules that apply to kids with disabilities, and to parents too. A lot of districts now have a special needs PTA, and that’s a great venue for getting both parents and school personnel on the same page. Often state and federal agencies will send someone to speak to you for free, and so will non-profit groups that support people with disabilities. That used to be my favorite work thing to do when I was still a working lawyer–to do presentations for groups about Section 504, because it helped prevent conflicts.

4. They don’t understand your child’s disability. This is more rare, and tends to be limited to rarer disabilities and/or newer staff, but it does occasionally happen. If your child’s disability is particularly unique, you’re gonna want to pull some medical literature out for the staff and share it with them.

5. You’ve already alienated them because you hadn’t read this post yet. I’m looking at you, parent who tried to get the special ed teacher fired because she wouldn’t provide summer tutoring to your gifted daughter with ADHD who’s already acing all her classes. Teachers are people. They’re patient to a fault, but they’re not going to stick their neck out for some entitled asshole who tried to get them fired when they were just doing their job. Be a grown up and apologize, and bring treats to the next IEP meeting. Because you’re a lady, assface. And because it’s what’s best for your kid.

I guess what I’m saying is, put yourself in their shoes, and see if you can’t figure out a way around the roadblock that is preventing the school personnel from giving your child what they need. You might be surprised at what you can accomplish.

A Perfect Life

Posted on by Beth Caldwell

I read an article recently that really set me off. The article itself isn’t really that important, but the reason for my anger is. It was the author’s attitude towards people with disabilities that made me want to pick up a pitchfork. Because, I feel like we really haven’t made much progress in this area in the last 100 years.

You know, before I had a disability, and before I had a child with a disability, I was a civil rights attorney and the bulk of the cases I handled involved kids with disabilities. And before I finished law school, I spent some time working for a disability advocacy agency that represented people with disabilities, primarily folks living in institutions but also folks living in the community. Which means I know a bit more than the average joe about how we, as a society, as a country, have treated people with disabilities over the past hundred years or so. Let me drop some knowledge on you.

Our country has a pretty fucking shameful history of acting like people with disabilities are sub-human. I think a lot of people know that the Nazis did some really bad shit to people with disabilities–awful experiments along with outright murders, just like they did to Jews, gay folks, and anyone else they saw as a threat to their perfect society. What people may not know is that right here in the US of A, we also used to routinely sterilize people with intellectual disabilities. Because we thought people with disabilities would have babies with disabilities (we really didn’t understand how disabilities happen). Our society saw people with disabilities as a threat, just as the Nazis did–that the more of them there were, the weaker we were, and we couldn’t have that.

That may seem like ancient history in the era of the Americans with Disabilities Act, but I feel like there’s still a sense in our society that if you’re not perfect, you’re a failure. I see it with The Boy all the time. He gets really upset that other kids are better at sports than him, or that he struggles to focus in class. I also see it in the way people treat my friends whose kids have disabilities. It’s with a sense of pity that their kids aren’t ever going to be at the top of their class.

And I feel like that pity, that view that it’s so sad that people have disabilities, that it’s such a shame they can’t do what others can do, is a branch of the same tree that produced Oliver Wendell Holmes’ sentiment that “three generations of imbeciles is enough.” (Yes, he actually said that. In a Supreme Court opinion signed off on by 8 of the 9 justices on the Court. Buck v. Bell, 1929.) It’s a world view that says everyone must be the same, everyone must be “perfect,” and if they aren’t, they are not our equals. They are The Other.

I know I haven’t written about the Cult of Perfect Motherhood in a while, but remember how one of the tenets of it is that you must strive for perfection at all times, otherwise you are a bad mother? But what does perfection look like? How do we measure it? Is it kids who get straight A’s? Is it a mom who never takes any down time? What if your kid’s disability prevents him or her from ever learning to read? Does that make you a failure as a mom? What if I have cancer and I get tired a lot, so I need more breaks than other moms? Does that make me a failure as a mom?

We have to let go of judging people’s achievements by the same standards. We are all different. Some of us live with limitations, but it doesn’t mean our lives have no meaning. It doesn’t mean we should be thought of with pity. We must begin to see people with disabilities as people just like everyone else, not as less-than. It’s 2014, for christ’s sake.

Homework: I’d like you all to read No Pity, by Joseph Shapiro. It’s a history of the disability rights movement, and I hope it will blow your minds and get you talking and thinking about people with disabilities in a different way. Let me know what you think of the book in the comments!

How We Talk To The Boy About His ADHD

Posted on by Beth Caldwell

I’ve never been the kind of parent to tiptoe around a subject with my kids. Like, when The Boy asked me in the car one day (Mother’s Day, actually, he was just about to turn 6) how a baby gets into a mom’s tummy in the first place, I said, “This is probably going to sound weird, but it’s the truth: grown ups do something called sex, and what that is, is, a man sticks his penis inside a woman’s vagina, and then some stuff squirts out of the penis, and it mixes with an egg inside the woman. But the egg is tiny, not like a chicken egg, it’s just a little speck, and then it grows slowly over time into a baby. Sex is something grown-ups do, not kids, and it’s also a topic that can make parents feel uncomfortable, so it’s a good idea not to talk to your friends at school about it. Let their parents tell them, OK?” And The Boy was like, “Huh. OK.” The Hubs helpfully pointed out that the stuff that comes out of the penis is called semen and it’s little tiny things in the semen called sperm that do the mixing with the egg. And I was like, “Oh, good point, The Hubs.”

Did I feel mildly weird about it? Sure, I mean, I don’t talk about semen and vaginas every day, and certainly not to a kid, so it did feel a little outside my comfort zone. But it would have felt weirder to be like “We’ll tell you when you’re older” or “That’s private” or “There’s a magical stork that does it.” I just find that the best way to handle a situation with my kids is to tell them the truth, in as straight-forward a way as I can, instead of tiptoeing around it. It’s like ripping off the bandaid, there’s some minor discomfort for a second but I feel a lot better in the long run.

So, we’ve done the same with The Boy’s ADHD. The day he got diagnosed, we sat him down and I said, “So, remember when we talked to your doctor about how you have trouble focusing in class? Well, he suggested that we talk to one of the people who works in his office to see if they think you have something different about your brain that’s making it harder for you to concentrate—it’s called ADHD. And the person DOES think you have it, and thinks that maybe there’s a medicine you can take that’ll make it easier for you to focus. So, we’re going to try out the medicine starting tomorrow, and see if it helps.” And he was like, “What’s the thing called again? That they think I might have?” And I said, “It’s ADHD, which stands for Attention Deficit Hyperactivity Disorder. It’s basically a fancy way of saying your brain works a little differently and that makes it hard to concentrate.” And he was like “Huh. OK.”

The next day, we checked in with him quite a bit about how he was feeling on the meds—we’re obviously a little worried about side effects, and we wanted to make sure it was working. At one point, The Boy and I were sitting at a table while he ate lunch and I said, “So, how does your brain feel today?” and he said, “I can focus better.” And I said, “That’s great!” And he said, “I like learning about how my brain works. Like Rudy did.” And I said, “Sure, Rudy learned about his dyslexia and that made it easier for him to learn, huh?” And he said, “Yeah, I like that.” YES! We always talk about Rudy and his dyslexia when we watch that movie, and how he had to learn about how his brain works differently, and how much easier it was for him to learn after he knew how his brain worked. It made me so happy to see him make that connection to his own brain, because Rudy really is one of his heroes.

Last week, The Boy asked me if we knew anyone else who has ADHD. And I told him about one of our adult friends who has it. I said, “In fact, she told me she takes the same medicine as you. Would you want to maybe talk to her about it sometime?” And he said, “Yeah!” And I said, “She told me when she started taking the medicine, she felt like everything was buzzing. Like, everything around her. Did you feel like that?” And he said, “No. That’s awkward.” (That’s one of his favorite words now.) And I said, “Well, I’m glad you didn’t feel that way. You know, maybe we could do a play date with her and her kids, and you could chat with her about ADHD.” And he was like, “Yeah, that sounds great!”

The other night, after The Boy’s meds had worn off for the day, I sat down with him for reading time, and man, it was brutal. He was resistant to even trying to read a book he’d picked out at the book store that weekend (it was a Star Wars Angry Birds book, so, definitely one I knew he’d like). So I said, “Sweetie, is it hard for you to focus now that the meds have worn off for the day?” And he said, “Yeah, it is.” And then IMMEDIATELY calmed down, and was ready to try to read. It was like the frustration just melted away. We got a couple pages in and it was clear he was really struggling to focus—his eyes were darting all over the page instead of looking at the words, and the book was already one that was pushing the boundaries of his reading ability. So then I said, “How about we try this other book that you’ve read already, since it’s hard for you to focus right now? Would that be better?” And he said, “Yeah, that would be better.” And he was able to pull it together to read the other book to me.

What I took away from that experience was this: when The Boy struggles with focus, it can make him feel VERY frustrated. But he’s not yet at a point where he realizes that his ADHD symptoms are why he’s frustrated. So, if we talk about it, name it, openly and without shame, then he isn’t so down on himself. He can say, “Oh, this is because my brain is working differently” and then the layer of frustration with himself that goes on top of the layer of inattention is peeled away. When he understands why he’s struggling, he doesn’t feel so shitty about struggling—he knows there’s a reason why it’s happening, and that it’ll be better the next day when he’s taken his meds again. Just like I feel better now that I know what’s going on with him, because I know it’s not some fault in my parenting that’s making him struggle, and I know how to help him struggle less.

I also learned that reading a brand new difficult-for-him book after his meds have worn off is probably a really dumb idea that I won’t be repeating! Duh!

The Boy has ADHD

Posted on by Beth Caldwell

So, I pondered a lot about writing this post–what to write, how to write it, when to write it, and if I should even write it at all. But on Friday, when The Boy was formally diagnosed with ADHD, and I shared that on my personal Facebook page, and I had so many people comment and ask questions and say supportive things, I just knew. I knew I had to write this post, and write it right now.

Let me give a little background about me, because otherwise, what I write isn’t going to make any sense and you’re gonna think “Wow, she’s really not processing this very well, I think she’s in denial.” Oh man, do I do denial well! Seriously, that’s how I survived the NICU. But in this case, I know exactly what an ADHD diagnosis means for The Boy. You see, I’ve been a disability rights advocate for a long time. In law school, I worked for a disability rights agency that represented people with all kinds of disabilities, including people in institutions (like mental hospitals, and institutions for people with developmental disabilities). I started a student group that focused on disability law. I know exactly how our systems work, or don’t work, for people with disabilities, including kids. Especially kids.

So, when The Boy started to struggle in school, and the word “distractible” came up about 100 times during his teacher conference this fall, and when she said how much he continued to struggle with reading and writing despite her best efforts, I knew what probably came next. I knew his teacher would probably do a referral for him to our school’s Student Intervention Team (SIT) to discuss his struggles. I knew we’d need to take him to his pediatrician for an ADHD evaluation, and that we might be looking at a learning disability too, which would require testing by the school psychologist. I knew that then we’d reconvene, this time as an IEP team, to make a decision about whether The Boy qualified for special education or any other services or classroom interventions. I could see it all unfolding.

I was a little sad, because nobody wants to hear their child is struggling, but I knew the process, and I knew that The Boy’s school is outstanding at this stuff (I’ve seen enough bad teams to know an outstanding one when I see one), and that in the end, outcomes for kids identified as young as The Boy are pretty darn good. It’s when a kid doesn’t get identified until they’re much older that the train tends to come off the tracks, or when they’re at a school that sees kids with disabilities as problems instead of as little people. Our school kicks butt, and we’d caught it early. I knew he’d be fine.

So, sure enough, when the SIT referral did happen a couple months later, I called the pediatrician’s office to set up the ADHD evaluation, and figured out what testing I hoped the school would do for learning disabilities. We brought donuts and coffee to the SIT meeting, because the first rule of parenting that NICU families learn is “Be good to the people taking care of your child,” and we sat down as a team to talk about The Boy. I watched the team work as beautifully as I hope every school team works (though I know they don’t)–they brainstormed ideas for interventions, they asked questions, they listened to each other, and then they easily came to consensus on a plan to figure out what The Boy’s needs are. Without me even having to ask, they proposed doing all the testing I would have asked for on the learning disability front, while we pursued the ADHD testing with our pediatrician. I left the meeting feeling elated.

I know that’s not normal. I know most parents, including The Hubs, leave a meeting where their child is referred for special education evaluation feeling guilty, frustrated, scared, overwhelmed…but not elated. I’m not your average parent, though. My perspective is definitely unique, especially for a parent at the beginning of this process. To me, a learning disability and ADHD are just not a huge deal. Do you want your kid to have them? Of course not. But they’re not life-ending disabilities–The Boy is not going die from this. I’ve literally watched him stop breathing and his heart rate dropping…so, I can’t get worked up over his brain working differently than other kids’ brains. And if you approach a condition like ADHD or a learning disability properly, as our school’s team is, they’re not even life-limiting.

Back to the process…so, to diagnose ADHD, the pediatrician’s office gave us and his teachers surveys to fill out about The Boy’s behavior. And then we met to discuss the results, which were not shocking. He scored extremely highly inattentive, and moderately hyperactive, and it’s much worse in an academic setting than at home, since we don’t expect him to sit still and focus at home the way he needs to at school. It took about two weeks from our initial consult to the diagnosis, which happened on Friday.

We’re putting him on meds now and seeing how it goes. I hope they’ll work and he won’t have side effects, and so far (a very short so far!), so good. I know some people have strong feelings about medications. I don’t. I think if I can give The Boy a pill that makes it possible for him to succeed at school AND doesn’t make him sick or a zombie, then fuck yeah, I’m giving him the pill. And if the pill makes him sick or a zombie or just doesn’t work? Then fuck no, I’m not giving it to him. I also think people who judge other parents for doing it differently are assholes, which is why I wouldn’t ever say someone is a bad parent for making a different choice than me. Consider this a warning for those of you thinking about being an asshole in the comments.

And now we wait to see how the meds work and what the results are for the learning disability evaluation, which we’ll meet as a team to discuss in about a month. The Hubs has dyslexia, and it tends to run in families, so it’s entirely possible he has both going on. I’m looking forward to having answers, because not having answers means the best we can do is a shot in the dark at what’s best for him. After we have answers, that awesome team at school can come up with a plan that makes sense.

I know there are a lot of you out there who are struggling with a diagnosis like ADHD or a learning disability or ASD or all sorts of other disabilities. When you had hopes and dreams for what your child would be like, and they don’t turn out to be the people you imagined they’d be, it can be hard to come to terms with that. It’s a loss, a loss of the future you imagined. It’s OK to grieve that loss. And while you’re grieving, I hope it helps you to know that you’re not alone, and that you don’t have to feel shame about your child’s condition.

Because, I feel very strongly that we shouldn’t treat disabilities as something to be ashamed of. They don’t make people less-than. They just make them different. Just like being black doesn’t make you less-than, or being gay doesn’t make you less-than. It just makes you YOU. I know the rest of the world doesn’t act that way…and that’s partly why I am writing this blog. I don’t feel sad about The Boy’s diagnosis, and I don’t want anyone else to either. Especially The Boy. I don’t want him to think there’s something wrong with him, because there isn’t. He is perfect just as he is.