I didn't have many misconceptions about Sensory Processing Disorder because SPD isn't something you hear about all that often, that is at least until you have a child who has sensory issues and you begin to learn about SPD, and suddenly you see the acronym popping up here and there and everywhere. And maybe SPD was the easiest for me to wrap my head around because my entire life I've been "weird" about certain sounds and textures. The sound of certain fabrics still make me wince and having to move Paul's college hologram sports cups from the dish washer to the cupboard requires careful maneuvering to not touch the offensively horrible hologram-y texture on the sides... so while I don't exactly understand what my sensory seeking girl is going through with her need for movement and spinning and being upset down, I do at least have a tiny bit of personal insight into how things that the rest of the world doesn't think twice about, can drive a person up the wall.
And Autism? Well, I imagine I could fill an entire blog with the host of stereotypes and misinformation that's out there. The day the doctor told me she was certain that Mae was on the spectrum, I knew virtually nothing about ASD. I'd read articles that came up in my newsfeed, so I knew that there was a different "cause" being circulated every ten minutes or so, but other than that I knew next to nothing about what it meant to be on the spectrum.
Fast forward to this month. I sat in an office while a doctor told me that Sadie had ADHD, knowing that I knew next to nothing about this latest acronym to be thrown our way. I knew that on the list of words that are particularly scary when a doctor says them (at least after the last year and a half in this house) it was way, way down so that my main reaction was mild surprise (it probably helps that one of my favorite people in the whole world was given this diagnosis and is doing quite well).
If I really had to put down on paper the sum of what I knew about ADHD I would probably have said that the kids are wiggly and just need more time to run around and be kids.
This week an article became rather popular floating around Facebook. It talked about the slew of children diagnoses with ADD and ADHD and offered a reason for the large numbers. It basically said that the reason was because children need more time to be kids and run around, that they don't belong sitting in desks all day.
As you can imagine, I tend to agree that kids should be allowed lots of time to be kids. But I also found myself pausing because... well... Sadie doesn't sit in a desk all day. In fact, she doesn't sit in a desk at all. By lunch time she's finished all of her school work and is pretty much free to do whatever she wants for the rest of the day (at this moment she's totally engrossed in spelling while standing at the dining room table). We move from the dining room table to cuddling on the couch as we work through our schedule. She's not spending all day cooped up holding still in one spot.
In fact, our days tend to look like this:
PE |
And art... |
"Recess" |
And this:
And sometimes this:
So even before the packet from the neuro-guy arrived yesterday, I felt like there had to be more to it than just "kids sit in chairs all day and that's why they're being diagnosed with ADHD" which, while I can certainly see would be aggravating to the "problem" I can't see, at least in our case, it being the cause.
And while my biggest girl was described as "wiggly and squirmy" during her evaluation, the reasons for the diagnosis went far beyond those symptoms. Some parts of the evaluation I found absolutely unsurprising. I already knew that she has a talent for math and that she has a very good memory. She only has to hear a poem a couple of times and she'll be nearly reciting it, which is why, for memory work, we go through about a poem a week (and usually the poems she selects are long!). So the fact that she scored high in "overall memory, new learning capacity, encoding, storage and retrieval" didn't shock me.
However I was surprised to see a few of the other results. On the "Sensory-Motor" index words like "1st percentile" came up along with problems with the "Visual-Spacial" index and "visuoconstruction." These indicate problems with "auditory and visual modalities" and fine motor coordination.
Basically these are apparently the glaringly obvious test results that point to ADHD. In her case, as it's shown in her results, it was less about being squirmy in her chair and more about being able to do math problems but having problems copying simple designs accurately and not having the best fine motor skills.
I'd actually noticed this early this week when we were doing a history project. After watching her identify Mesopotamia and Egypt, and trace the Nile and Tigris and Euphrates on a map and write Akkadian Empire in the appropriate place (while ranting about how angry the dictator she'd just learned about made her... because she took major offense to the story of Sargon convincing the army to overthrow the king after being raised in the palace and was even more furious that he became dictator...) she struggled to draw a "pyramid" next to the Nile as the instructions said. Making the points meet at the corners was obviously frustrating and difficult.
And that is exactly why I am thankful for these test results. Because at the time I thought "how can a kid who does fraction work sheets for fun, not be able to draw a triangle... a shape that she's known for years?" Following the results I can see that simple things like drawing shapes are something that are clearly a challenge and that we should devote a little more time too (and her art book, which I hadn't made a priority, actually starts at that level, with copying simple shapes and designs, so we already had some of the tools we needed, we just had to get to work using them).
I do think that kids need time to be kids, to get out and play and have fun... but I also think the "ADHD is a result of being in a chair all day" may be simply a result of confusing correlation with causation. Certainly kids are wiggly, but at least from what I've seen personally, wiggliness is a symptom of something else that's happening, just as it often is with sensory seeking kids who are wiggly because something else is going on.
That's actually why SPD was my first thought when I took Sadie to the doctor. Those "auditory" and "visual" difficulties have a lot in common with SPD (actually I'd be surprised if she didn't test on a sensory test as having sensory difficulties). Sadie's doctor explained that it's a result of neurological immaturity there as a result of the ADHD.
As we've ridden the roller coaster of this past year, I've had people tell me that a diagnosis isn't important... because it doesn't actually change the issue that you've already been dealing with. In a way that's true. A diagnosis doesn't erase the challenges. But it's a starting place to learn more and I know in my case as a parent, understanding has definitely increased my patience a hundred times over. A diagnosis isn't an excuse, but it can help things that just don't make sense make a little more sense.
These challenges, as with any challenge that life throws at us, often seem to do a great deal of good forming character. In the past months I'd already seen Sadie overcome her natural tendency to always be moving to buckle down and do her work well. Self control was already falling into place as she got older. Now, with this new knowledge, I can help her work on those other areas that are challenges and hopefully find an OT to help us work out a plan for those challenges that would use a little extra help. And on days when the wiggliness seems to be winning I can get out the exercise ball and let her bounce on it while she works.
Disclaimer: All of this is written from the point of view of a parent who doesn't have any formal medical training and who's just been going along through all of this learning all that I can!
Edited to Add: When I first wrote this I skipped who in our family has ADHD because he wasn't home to ask and I wasn't sure he'd want me to share... but since he read this he emailed me to give me the green light and... Sadie comes by her diagnosis honestly since her Dad has the same one! Which is one reason why I absolutely believe that success is very possible and why I know she'll have a good example of someone who's facing the same challenges and overcome them by working very, very diligently to succeed.
I'm trying to think if I have anything to say other than, Yes! Yes! And, Yes! I have a daughter with ADHD and a son on the spectrum and my struggle with the public (and private) perception is ALWAYS with the ADHD kiddo and almost never with the ASD kiddo. Just like the anti-vax crowd has tainted the autism community, the anti-medication crowd has ruined us for authentic diagnosis and treatment of ADHD. Let me say, I do not vaccinate on a regular schedule and I do not (at this time) medicate for ADHD, but when I was constantly in tears feeling guilty for how "bad" my kids were [they are not and we're not bad! they both have a lot of trouble with transitions and impulse control] I was SO GRATEFUL for competent diagnosis and pathways to help.
ReplyDeleteI agree that school does not "cause" ADD or ADHD. It just becomes apparent when kids are asked to exhibit self-control, sit still for a bit, perform undesirable tasks, or let others have the spotlight. A lot of parents just think their kids' wild behavior is adorable and normal, and it's the teacher that says, "No. Look around. You don't see most kids behaving this way." (Cue teacher hate for pointing out that Super Special Snowflake isn't perfect.)
ReplyDeleteHere is my take. I think that attention-disorders on on a spectrum. There are kids that are able to exhibit extraordinary self-control, are very tough to distract, and are very, very good at making themselves do undesirable tasks. There are kids on the other end of the spectrum that just can't pay attention to anything that does not acutely interest them. They don't have low IQs, but do poorly in school. Many kids are somewhere in the middle.
In the past, a lot of kids with poor attention spans/disorders simply did not do well in school and knew that they were not college material. They chose jobs that were more physical, because they were well-suited to things that tired them physically and demanded physical effort. Nowadays, most parents want their children to be able to go to college. Going to college requires good grades and test scores, and it also requires that the child not hate traditional schooling. So, kids who have ADD/ADHD often need to be treated so that they can function in school and achieve at the level of their peers. It's not really about "doping them up so that they sit there quietly and not bother the teacher" like many people claim- it's about giving them the tools to do well in an academic environment. Very few parents are willing to say, "Oh well! He just won't be college material because he can't focus!"
In a homeschooling environment, you can better control distractions and work one-on-one with Sadie on managing the parts of her brain that make learning more difficult. You may find at some point that a trial of medication (many non-stimulant options these days!) is worth a shot. Maybe not. What you might want to be cautious about is making her environment so specialized and attuned to her "needs" that when she does enter a classroom environment, at whatever point that is, it is so foreign to her that she can't handle it. Even if she enters a convent right out of high school, she will need to learn quiet focus BIG TIME :)
I'm not too worried about her not being able to focus, because our environment, because of what's going on in our home, can't really be that specialized. After all, on the other side of the baby gate Mae is having her therapy (which as you may imagine is not quiet). Today she did her work with classical music playing in the background. And with a little brother who's around much of the time, I think she probably blocks out more than she would (between the two of them) in a standard classroom.
ReplyDeleteI'm not sure the doctor believed how well she focuses when she does do school, because compared to the rest of the time and how fluttering and energetic she is it's kind of amazing. But she definitely does seem to have a great deal of self control (likely because of necessity in that area).
No for me understanding has more to do with having patience when we hit road blocks that seem like they should be exceptionally "easy" based on her other abilities. Before we'd come up to one of those and I'd be so baffled but now it's making so much more sense!
Kori- Thank you for your comment! It totally can help things make so much more sense even when it doesn't change much! I don't feel like it's really changing anything here, other than my understanding of why somethings that seem easy are more difficult!
ReplyDeleteAnd Anonymous, I totally appreciate your comment too! I can definitely see how it would have been different in the past, with kids that had hard times sitting still and didn't necessarily enjoy school work being steered in other directions (that may have better suited them depending on their interests anyway). While I totally will encourage college for any kid with an interest in it, I can also see really encouraging vocational skills if a child seemed more apt and interested and passionate about something (like being a mechanic).
ReplyDeleteOpps! Had to comment that I added an update since I wasn't sure if the person in our family gave me the green light on sharing who here has the same diagnosis! The update is at the end of the post!
ReplyDeleteMy babysitter has ADHD. She's a really good insight to it. She said there is the hyper part but every kid is hyper. Really its the concentration part. She says she gets distracted and her meds help her stay on task.
ReplyDeleteI told her that I've heard great things about behavior modification type strategies. Meaning teaching young children how to handle the distractions. Because at some point doctors expect kids to wean themselves from the meds. They don't expect you to be an adult taking meds.
My husband has ADHD. I often wonder about my son sometimes, but is there an age that it's "too early" to test for something like that? Maybe I'm just confusing "normal" small child behavior. He's my oldest so we're both learning as we go along about parenting and what works or what doesn't. Maybe I just haven't found what works for him yet. idk.
ReplyDeleteI think that the crux of the argument blaming sitting for high ADHD/ADD rates isn't that it's BECAUSE of sitting, but that sitting causes kids to get squirmy (which is hard to argue against) and that squirminess is often misinterpreted as ADD/ADHD... Also, the test your daughter had seems pretty exhaustive. The test I was given in high school was certainly NOT that and consisted of questions trying to determine if there was a basis for about a dozen neurological issues, one if which being attention-related, and included questions like "do you ever wish you could be doing something other than homework because sitting at a desk is boring?" Sooo, it's not surprising to me that kids are turning up as suffering from ADD/ADHD at alarmingly high rates, and I personally do agree that it's got a lot to do with the school environment, but that's not to say I think the school environment causes the disorder itself, it just causes the falsely high "positive" rates. Just thought I'd point out a possible misconstrual (is that a word?) on your part of the claims by others. Maybe it'll clarify things?
ReplyDeleteMaria
Thanks for sharing so much Cammie. It helps other moms, too, that are dealing with the same issues. I already mentioned my 10 yr. old with SPD. She would never make at a desk for 6 hours...never! I am a bit sensory sensitive myself.
ReplyDeleteDo any of your children have sleep issues? Maybe struggling with falling asleep alone or in their own bed?
Hi Theresa,
ReplyDeleteSleep for the most part, at the moment is going well. Sadie had a really hard time sleeping for the first two years of her life, but finally outgrew it. Maggie went through a phase where she would jump on the bed for like four hours at bedtime, but she seems to be past that too. And Patch for some reason is a super sleeper so far! I'm hoping the new baby follows his lead!
You are blessed. My daughter still can't fall asleep on her own and ends up with us. Thankfully she is a petite little thing : )
ReplyDeleteI think it's more of a separation anxiety thing now so we are working on that.
And PS...it's not because she is homeschooled like my family thinks. * winks*
I know, because I have no idea how I'd get my work done if she didn't go to sleep. When Mae does have problems getting to sleep we give her melatonin, but for a while when she was sick I had stopped because she was sleeping too much and I was worried! So that has been one little thing that's helped (I think doctors are way more willing to recommend it to kids on the spectrum than they are for kids who aren't).
ReplyDelete