Friday, June 3, 2016

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.

Wednesday, June 1, 2016

Still Fidgeting, But Now With Diagnosis

It came as no surprise to me or Londo when we got the diagnosis that the Pumpkin has ADHD. There have been YEARS of high activity, constant motion and fidgeting, impulsiveness, inability to focus, inability to organize, forgetfulness of tasks and trouble keeping her attention on tasks. I had suspected it for a long, long time. I'm not saying all fidgety babies will have ADHD, but my daughter was fidgety and had other signs and does indeed have ADHD.

Not only at home have we seen these issues, but also in daycare and every year of school. In the daycares, the teachers would pulling me aside many times saying how the Pumpkin wouldn't sit down and participate in circle time. I remember thinking that not all kids can sit that long. But then I'd stay and observe, and she'd be the only one not sitting, moving around, finding other things to get into to the entire time the other kids sat in circle time. And then there were her issues with nap time. Nap time? What is that? Oh that time period when my daughter has to stay put for over an hour in a darkened room with nothing to do? Yeah, that generally did not go well.

In kindergarten at the Montessori school, I had to go in to meet with the teacher and the director to discuss the Pumpkin's behavior issues. She is spirited, I'd think, and high energy! Aren't there a lot of kids like this? Well, just like the fidgeting as a baby, some kids are just more high energy than others. And the Pumpkin is a lot more. The Pumpkin needed some special treatment (now I've learned the official word is "accommodations") to get her through the day. The teacher explained she did some research on the internet and found some things she was going to try. Ways to keep her on task, a place for her to take a break and calm down, things like that. She mentioned that she found these ideas on a site about kids with ADHD, but she was careful to add that she wasn't saying the Pumpkin had ADHD and that she wasn't suggesting a diagnosis. Just that they had some good ideas for the Pumpkin.

At the time, I was scared of those four letters. When I was growing up, those letters were just starting to be used, and they meant something was wrong with that kid! I didn't understand what it really meant, and I was scared that my child had something wrong and would be labeled.

We got through kindergarten, and the teacher was great working with the Pumpkin. But now I was also starting to research tips for dealing with high-energy kids, which led me to websites about ADHD. I started reading and learning about it. My eyes were opening, and I was starting to understand what ADHD really means and how my daughter had all the symptoms. Londo still wasn't ready to label her with anything, and I agreed. But boy, those sites helped me understand that she wasn't trying to be difficult or make things harder than they needed to be--her brain works differently from mine and others. For many things, she needs help and guidance, not parents getting mad and yelling.

A few weeks into 1st grade, I got an email from the Pumpkin's teacher asking me to come in and talk about some issues she was having. When I sat down with the 1st grade teacher, she explained to me that the Pumpkin was having issues sitting for long periods, focusing on her work, being easily distracted. As every teacher (or even every adult!) who has had the Pumpkin would say, she is very smart! But... she sure did have a lot of energy! And she wasn't finishing her work. She was distracting other kids. Etc., etc., etc. I explained that I was pretty sure she had ADHD, but that we were not ready to get it diagnosed. The teacher was understanding, and we discussed things she could do in the classroom to help the Pumpkin stay focused and get her work done. She was a fabulous teacher, and we worked with her throughout the year to make sure the Pumpkin had a good year.

And 2nd grade, pretty much repeat the paragraph above... email a few weeks in... meeting with teacher... not ready for a diagnosis... I let the 2nd grade teacher know what seemed to work and not work or stopped working for the Pumpkin in 1st grade. At the parent-teacher conference in November, the report was overall good, but she was still having some problems with focusing and finishing her work. Londo and I talked with the teacher about whether or not these issues were interfering with her learning. She said not at that time. But as the year progressed, the Pumpkin was finishing less and less work in class. She would bring it home, and we'd make her finish the school work with her homework. It was excruciating!

In late spring of her 2nd grade year, the teacher emailed again, saying that the issues were now interfering with her learning. The teacher and we parents tried different incentives, but it was still a struggle for her. Londo and I final agreed that it was time to get her diagnosed.

I remember the day I had my eureka moment about myself, when I realized I have Seasonal Affective Disorder. My entire life felt like it made sense. Just having a name for what had been going on for YEARS made me feel better. I was able to look it up and find ways to deal with it.

I wanted that for the Pumpkin.

I met with our pediatrician, basically saying "You know how we have all suspected she has ADHD? We'd like it official now." The pediatrician, who has been the Pumpkin's pediatrician literally since birth, nodded knowingly and gave me names of people who do evaluations.

That spring into summer, we set up all the appointments for the in-depth evaluations. Her 2nd grade teacher, Londo and I filled in numerous questionnaires about the Pumpkin. She went into the appointments and was tested for ADHD, learning disabilities, IQ, and some other things.

Near the end of the summer, Londo and I met with the woman who conducted the evaluations. She reviewed the final report with us. There was nothing surprising in it to Londo and myself. The Pumpkin is extremely smart, very creative and interesting, and great at verbally communicating. There was no doubt at all that she has ADHD. She did not have any learning disabilities. And she also has a diagnosis for general anxiety. Yes, yes, yes and yes. Londo and I just nodded and looked at each other knowingly.

It helped to have the official diagnosis going into 3rd grade. Our school is really fantastic about how they handle different types of kids and all of their needs. We put in place a 504 plan, which documents the accommodations the Pumpkin needs in order to function in class at the same level as her peers. Having the diagnosis and the 504 plan in place means that what she needs is recorded in official documents so that every year each new teacher will know what she needs. The email from a new teacher a few weeks into a school year won't be needed, because we already have information on record and I will reach out to the teachers ahead of time letting know the teachers know about the diagnosis, that she has the 504 plan and that we will support anything the teacher needs.

Now, a year after starting her evaluation, Londo and I are both very knowledgeable about ADHD. Her brain works differently than (most of) her classmates, and that's okay. As we've talked about with her, there are lots of amazing people in the world who have ADHD (her favorite example I gave was Iron Man, because come on! Tony Stark definitely has ADHD!). Having the letters makes no difference in who she is as a person nor her behavior. She is going to be herself, and we love her for it.

This kid has amazing energy and is interesting and is fun and funny and has so many wonderful qualities. She is still very fidgety, but that is just part of the awesome package that is my vivacious, interesting and awesome daughter. This child is going places in life, and we'll help support her getting there.

Tuesday, May 31, 2016

I Blink, and Years Have Gone By

So. Here I am again. It's been about two years since I last posted anything, and I am still muddling through this parenthood thing.

I miss writing. I miss recording my kids' lives. I miss writing out the issues we're going through so that I can better make sense of things. I miss thinking about the stuff that happens in terms of stories. So, I'm going to try to start back up.

The Pumpkin is at the end of 3rd grade, the Pookie is finishing up 1st grade. They are amazing, smart, healthy and (I can honestly say) happy children. We have our issues... who doesn't? But I would like to work through these issues and even share these issues with others as we figure stuff out.

Even though I often miss blogging, the thing that gave me a kick in the pants to start again is getting the weekly update from my daughter's class--in reading, they are learning about how autobiographies, journals and blogs communicate information. I read that and thought about how much I wish I was still blogging. Why not make that wish come true? I have the power to do it! And hopefully, I will again regularly record my experiences and their activities.