ADHD Runs in the Family

It has been a tough year for my son. He's in 2nd grade this year, and he is having a rough time. I mean, a really hard time, to the point where his ability to learn is suffering.


We worked with the school addressing his sensory issues during his kindergarten year, and we made it through that year. Then his first grade year went really well! He did great all year long, and his teacher seemed to know just how to handle any issues that came up. And some issues did come up, but the teacher worked with him to resolve them quite successfully.


But this year, a lot of things seem to be coming to a head. His lack of focus, inability to control his impulses and inattentiveness have exacerbated his sensory issues, leading to some serious behavior problems. His teacher is great, really wanting him to succeed and working with him and us to try to get him there. Unfortunately, the things that have worked in the past do not seem to be working now.


In the first week of school, I got two phone calls and an email from the teacher. The second week was about the same. He was not doing the work assigned in class, especially the reading and writing, he was not listening, he was disrupting the class with talking and noises (while the teacher was talking), and he was having meltdowns. We met with the teacher and with the counselor. We talked with the Pookie, we've offered rewards, used behavior charts, we've threatened and punished, we've consoled and supported.


He seems to have the biggest problems adjusting to changes in routines, and neither of my kids have been good with transitions. For example, we've known for years that if there is a substitute teacher in the Pookie's class, he is NOT going to have a good day. We know that he does much better with routines and structure (this is why we did not keep him in a Montessori school), and when there is not a clear routine or when things change, he has a really hard time adjusting.


As the school year progressed, things were getting worse and worse. He was getting upset and leaving the classroom without permission. He'd go in to the bathroom and not come out. For hours. While a staff member sat outside the bathroom to make sure he was okay and to not leave him alone. When they finally got him to talk, he said he wanted some time by himself alone. But the bathroom is no place for that, with other people coming in and out, as they explained to him. One day was extremely bad, and they offered a quiet room that the school has set aside for kids with special needs (small and nothing in it except a mat on the floor), which helped, but the room can't be used as a cool-down place on a regular basis. That day, the second time I was called I said that was it, I was going in to pick him up early. I brought him home and we spent the next few hours doing schoolwork and homework, with him fighting and being contrary the whole time. It was no fun at all for either of us.


He would also bang things, throw things and shove and even hit people when he was upset. He was disrespectful to teachers. But most of all, he was mad at himself!


It was as if he didn't even know what was going on when he'd get so upset. When he was calmed down, he usually wouldn't even remember what happened! I mean, for real, not just trying to get out of trouble. We'd walk him through what lead up to it and then ask about the actual thing that happened, and he would say, "Here's the thing, that's the part I can't remember!" and then he'd say that he was dumb and he hated himself and things like that.


We used to have the added frustration that the Pookie didn't know how to find the words to describe things. At least now, he can do that. But he still has issues finding the words in moments of intense frustration or when he is simply overwhelmed by sensations or emotions. The even bigger issue, though, is that he can't seem to control his actions.


For example, we had my close friend and her two girls stay with us for a weekend. All four kids played well together mostly. (It was really cute, in fact, because they came up with their own play and practiced and made sets and costumes and the performed it for us at the end of the weekend.) At one point, there was some kerfuffle and the Pookie pushed the older girl and then got upset. I sent him to his room to cool down/have a time out, and he asked me to come in after he calmed down. He told me that he was sorry and that he really didn't mean to do it. He said he didn't even realize she was so close to him or that he was using his hands (pushing her) when he was doing it. He said it was like he couldn't even control his own body. It was the best explanation I'd ever heard from him!


So even though he was getting better with using his words to describe what was wrong, he was still having lots of trouble at school, where it's easier to be overwhelmed and there is no place to go to be by himself to calm down.


The absolute worst was how upset he would get with himself. He would say he hated himself and wished he wasn't alive. It's so heartbreaking to hear your child say and think those things about themselves.


He was (and we were) in crisis.


During this time, I bought a lot of books for kids about how to understand and control your emotions, how to recognize sensations in your body, how to calm yourself down, how to meditate (which I've done with the kids on and off for a few years) and about ADHD. I bought him fidgets to help with his anxiety and getting overwhelmed, and to help him stay focused (research shows kids/people with ADHD focus way better when they are able to fidget). I bought him a sensory-input squishy cushion for his desk chair. We talked about techniques for calming down, and I even made him little cards with the three techniques we decided on to keep in his pocket (Flexible Thinking, Meditation, Distraction).


But this was not enough. All the band-aids that Londo and I worked on with him were not enough. There was something more going on, and we needed to address the underlying root cause. At this point, it was very clear to Londo and I that until his inability to focus and control his impulses were addressed, he wasn't going to be successful at school or at home or in his activities.


So while we were doing all the cognitive-behavioral work, we had set up an evaluation for him. We went to the same people that evaluated and diagnosed my daughter. This group is amazing, and the doctor who does the evaluation is really thorough. Like with my daughter, they tested the Pookie for ADHD, learning disabilities and IQ, and I requested that they evaluate him for Oppositional Defiant Disorder (ODD).


As side note about why I requested he be evaluated for ODD: My son is often contrary just to be contrary, says the opposite of what you say just to say the opposite. Like that time when he was literally standing in the rain and said that it wasn't raining--with an angry face, not like he was joking. When I looked at the list of symptoms, the Pookie had many of them. He is very moody, is touchy, argues with anyone if that's his mood, defies his teacher and staff at school, deliberately annoys classmates and his sister. But he is never spiteful or vindictive. And he does not blame others for his mistakes. It seems more like his instinct is just to be contrary, and because he is so impulsive, he can't help himself and then feels bad afterwards. And on the flip side, he is so sweet, cuddly, friendly, supportive, helpful and creative! But just to be sure he did not have ODD, I wanted a professional to evaluate him.


The thorough evaluation came back with no surprises. He definitely had ADHD (it run in my family and Londo's family, and boy does it run in ours!), he is smart, and he has anxiety. They did not evaluate for sensory processing disorder, but we had submitted his previous evaluation for that (by a different group), so that was accounted for in the report we received. The evaluator did not think he has ODD, mainly because he is never spiteful. She provided a thick report that included two pages of recommendations for school and home. This evaluation was well worth the money (and it was expensive)!


We submitted the report to the school, and worked quickly to set up another meeting. This meeting was going to be an IEP screening, because the Pookie was having so many problems we needed to figure out with the school just how much support he would need. We made the meeting for the Wednesday after Thanksgiving.


Meanwhile, we met with our pediatrician(s), submitted the report to them, and discussed medication for ADHD. The Pumpkin was on medication for ADHD again this year, but this year she tried a different kind and it seemed to be helping SO MUCH--but that is a story for another post. The pediatrician suggested we put the Pookie on the same kind, since it worked so well for his sister.
This was right before Thanksgiving. We went to my in-laws' house for Thanksgiving, but we were able to get the prescription filled right before we left town. We didn't want to try new medicine on Thanksgiving itself (we didn't want to even consider an emergency trip to a hospital on Thanksgiving!), so we gave it to him the next day.


Holy. Crap.


The difference between the two days was amazing. He was calm and focused. It was like he was on his best behavior without even trying! From my outside perspective, it appeared to me as if all the noise and buzzing and constant chatter that must go on in his head was quiet. He looked like he could think, instead of just react which was what he had been doing. We had a great day, and he was so proud of himself.


I notified the school on Monday that he had started medication, and he had an amazing day. Tuesday was also a great day. When Londo and I went in for the IEP screening meeting on Wednesday afternoon, we were all a little discombobulated... We were seeing a different kid from just the week before. I mean, it's not like he is not himself. It's more like he was able to show the best sides of himself without all the struggle and contrariness that can come between his best sides.


At a bit of a loss, we all agreed to close the IEP assessment (which can always be reopened) and reconvene in January to discuss a 504 Plan for him. He will still need accommodations, and that is what the 504 provides kids with ADHD.


It's been about a month since he started medication, and he is doing great! Not perfect--he is still a 7-year-old kid, after all. He still has some problematic moments, but overall he is able to control his impulses enough to think before acting and he is able to focus on his tasks at school. His reading has just taken off because he can sit and focus on the words enough to enjoy it!


Most importantly, the Pookie is so proud of himself! With him, the bad will build on the bad and start snowballing into worse and worse (as we saw in the first few months of school)--BUT the good builds on the good! He is feeling better about himself, and he is very happy to be taking the medication. He is able to show everyone (without struggling to do so) how smart and funny and creative and sweet he is!

And a Diagnosis for the Boy

Before the Pumpkin got her diagnosis of ADHD, we had a slightly different evaluation done for the Pookie. The Pookie was evaluated to see if he has Sensory Processing Disorder (SPD). He does indeed have sensory issues, but it is not quite at the disorder level.

There were signs of sensory issues since he was a baby, and especially as a toddler.

He always needed strong input to his sense of touch. As a toddler, he didn't just run up and hug me, but instead would throw his whole body into me, full force. Every time. He can't just brush up against something, but bangs into things and people. There is no counting how many times I've had to remind him to "be gentle with Mommy" not because he is trying to hurt me (or anyone), but simply because soft touches don't really compute to him.

He always held his hands over his ears and freak out when there were loud noises, especially sudden ones. This could be difficult to deal with, like in public bathrooms with automated flushers! (I learned to keep a post-it note in my purse to put over the automated sensor while he used the potty, then I'd send him out of the stall before removing the post-it and letting it flush.) There was the jazz-for-kids concert I took them too, where he covered his ears and needed to move to the way back, while I hoped that he/we weren't offending the musicians. And of course the Marvel Universe Live! show we were all so excited about seeing, and within the first 5 minutes of bombs and gun blasts and lights flashing, Londo had to take him out of the entire building. Not just the auditorium, but the entire building! When he needed to go potty, Londo convinced him to go back to the building to use the potty there, but Londo told me that his entire body go more and more tense as they got closer (Londo was carrying him and felt it very clearly).

The lights at the Marvel show were an issue in addition to the noise. Sudden bright lights? Freaks him out. And just in general when there is a lot going on, he is overwhelmed. All those years of tough drop offs are partially to do with his getting overwhelmed when he would walk into a classroom. Too much all at once, especially if a bunch of kids try to run up and greet him. Sensory overload.

And then there is the picky eating. Have I mentioned the picky eating? Huh. I don't think I have. Apparently there is a name for kids who are more than just picky eaters--resistant eaters (it really is a thing). And that is what he is. We have struggled for years with his resistance to try anything new or different, and the handful of things he does eat has dwindled, since he gets tired of foods and/or doesn't like them any more. And no one better dare say to me (again!) that if he's hungry enough, he will eat what we server. Turns out? He won't. He'll just get hungrier and crankier, and I have to deal with that on top of everything else! We've tried a few different approaches and seem to be making progress over the years. It's a taste issue, smell issue (he actually doesn't have a good sense of smell), texture issue and a mouth/tongue mechanics issue.

When anyone says "Smell that!" The Pookie's response is "I can't smell." Not that he can't smell that thing, but he means in general he doesn't really smell things. I don't have a great sense of smell, but I certainly can smell things. He has difficulty either smelling or processing the smells or maybe both. Even when he sticks his nose directly into a flower, he just kind of shrugs like he doesn't really notice the smell.

So that covers the senses, right? Did you know there are a few more? There is also:
- Vestibular - the sense for movement and balance in relation to gravity. This sense tells your brain if you are right-side up, upside down or moving left, right, forward, backward, etc.
- Proprioception - the sense of where your body parts are. This sense is used all the time when you are moving, for example I can walk up stairs without watching my feet because of this sense letting my brain know where my foot is.
- Interoception - the sense for what's going inside your body, such as when you are hungry and when you need to go to the bathroom.

Every one of those senses have all an issue for the Pookie to some degree. They have not been an issue to the degree where he is unable to function in almost all circumstances. But he was having issues in daycare and pre-school, which is when we figured out there is something going on with him.

In daycare, he was just sometimes "difficult" or overwhelmed. But in pre-school, we specifically put him in a pre-school that had a teacher who understood that 4-year-old boys would act like 4-year-old boys! They are active! They like to bump into each other! But by the middle of that year, the teacher pulled me aside and said perhaps there was something more going on. Then things got better... for a while... then they got bad again in the spring. And she pulled me aside again and said she was worried about kindergarten. She recommended that we look into this and try to figure out what was going on with him. When I mentioned we were worried about him being labeled (like with ADHD), she pointed out that if we didn't get him a label, the schools would--and we likely wouldn't be happy with that label (such as bad kid, problem child, etc.).

After getting Londo's buy-in, I went to our pediatrician. While we talked, the Pookie played on the fire engine-shaped examination table, making constant noise and being constantly in motion. The pediatrician asked me, "Is he usually like this?" I looked at the Pookie and said yes, he was. The pediatrician suggested that we get him evaluated for sensory processing disorder, and she gave me some names. (If I haven't mentioned it before, I love our pediatrician!)

There were questionnaires and an evaluation appointment. He has sensory issues, but not quite at the disorder level. We did occupational therapy (OT) for a while, and we learned a lot about sensory diets and ways to calm him down when he was overwhelmed and exercises to help his coordination and crossing the midline and all sorts of things! We bought him special shirts that squeeze his body and fidget toys to help him distract his body so he can focus on learning.

He had an amazing kindergarten teacher, who worked with him and us and the school to put in place a behavioral intervention plan (BIP) to provide goals for him and a path to reach those goals, including tools and accommodations. The teacher and the school met with us and discussed and implemented ideas to help him not get so overwhelmed and to calm down if he got too upset.

He is now in 1st grade, and doing great! Early in the school year, we talked with his 1st grade teacher about his issues and what he might need (fidgets, gum, noise-canceling headphones, a rocking chair for morning meeting/circle time). His teacher uses tools he has seen be successful with kids in his previous classes, and he has also given us ideas for helping the Pookie at home. All in all, the Pookie doing really well with his behavior and in school in general!

He is an amazing, creative kid. He is so interesting and interested in all sorts of things. He is energetic and thoughtful. The sensory issues we can work through. After all, he totally gets it from me! So I understand, and we all work together to get where we need to be in life. Everyone has something, right? Sensory issues? We can deal with that.