More talk on DCD=Developmental Coordination Disorder

[PeterPan]

I'm pulling this over for EmiSD so she can have her own thread. 

Here's the original 2015 thread she's referencing. 

 

11 minutes ago, EmiSD said:

Hi - Is there any rule in replying to a 4 year old thread? I just joined this forum and found this thread highly relevant. My son has DCD, diagnosed in summer between Kindergarten and 1st grade. We are 2 years in to public school, lots of tears and me spending endless late nights on the internet trying to figure out how to help him. I would just so love to be in contact with other parents who understand this. I feel like the our story is that I have been "fighting" for my son since he was 2 but because the range for motor skills is so wide at this age everyone thought he just needed more practice. It really infuriated me. I am a single parent and we live in townhome. I literally had providers assume I didn't play ball enough with him because I'm not a "dad" and he didn't get outside enough, due to our lack of yard. In comparison, I have a 20 month old who is already using a scooter and I've done nothing different.  To Displace's post, if I could go back, I wish I would have advocated more about what I was seeing when he was in preschool and that I would have done more practicing of fine motor tasks in our loving home environment. Instead I ended up adapting the environment without realizing that I was doing it. Like Displace, I just assumed he didn't like to draw and every child is different, right?

In the 2 years of school, my child became a different person. He has major anxiety, breaks down into tears and hides under the desk the moment he perceived any task as difficult - motor or academic - and is so bouncy in the classroom they have no idea what to do with him. He entered school with an IEP for speech and OT (for "sensory" issues). I was always frustrated because the OT would send him to a swing or wrap him in a "body burrito" versus actually work on handwriting. I know there are kids with real sensory issues, so I am not saying that isn't something to consider, but in the case of my son, he didn't need "body burritos" in his curriculum based Pre-K. Things fell apart in kindergarten and continued downhill with behavior and peer issues. My son is highly social and takes it very personally when kids say not nice things to him. I should have made a change the moment it started, but his school was one of the most prestigious charters in our district that we won a "lottery" to get into. I thought we were in great hands. Knowing what I know now, my son needs explicit instruction and this school's charter philosophy was the direct opposite of that - and entrenched regardless of his IEP.  So many things I could say there, but fast forward to today. I found this forum because I am looking at a homeschool option. He is also in a summer camp at a private school which offers small group direct instruction in core subjects that we are considering. I cannot believe the change in just a few days at camp.

My question for you DCD parents:

- Should we be, or is anyone already, advocating our legislature about DCD being considered a learning disability? In the UK it is considered such.

- In Canada there is an OT practice that runs a 2 week summer camp for children with DCD. And also UT Arlington has a DCD clinic. I've spoken with the director. I would love to get something similar going in Southern California (we're in San Diego). Any other parents interested in this? 

- My child now has an ADHD diagnosis which I am not 100% in agreement with because prior to kindergarten my child was not hyperactive. The symptoms became progressively worse as the school year/s progressed. My theory is that this is manifestation of stress/anxiety. I realize it's highly co-morbid, but I also saw the way ADHD was diagnosed - no testing just parent/teacher observation forms - and I wonder if that might catch some "false positives."  My parent form would not have qualified him for ADHD but the psychologist observed him in non-stop motion at school because it was a school evaluation felt it was hindering his ability to learn. I would love to hear from other parents with children of DCD and ADHD about what your experience has been.

- Any parents with kids with DCD, withOUT and ASD diagnosis, how are your child's pragmatic skills? My son is social, but really struggles to understand social norms - stands too close, doesn't get nuance, humor, has black and white thinking, etc. For example he thought "having a rough day" was when he was "rough" on the playground, or if another kid had been rough with him. 

- Lastly, if any parents had a child who "went downhill" upon entry to Public School and was in a similar situation to my son in that there was a lot of anxiety about going to school, peer issues, etc, how have things changed with homeschooling? or change in schools? What I'm looking for here is a picture of how things can look mental health wise a few years down the road with the right "interventions." I'm very concerned about my son's mental health because, as other posters have mentioned, he sees other kids pick up skills easily and feels inadequate.

Sorry to be so long. Thank you for reading to the end!

Edited June 23, 2019 by PeterPan

[PeterPan]

DCD is praxis. We already have SLDs in the DSM, so I don't see why we need to label DCD an SLD. The goal of the DSM is to separate out each thing and give each aspect a separate label. 

3 minutes ago, PeterPan said:

I would love to get something similar going in Southern California

You sound like you have a lot of energy and enthusiasm. Fwiw, I finally decided my energy was best put into my son, because I couldn't find providers who were ready to do EVERYTHING that needed to be done. I suggest you put your enthusiasm into getting any training you can. Not necessarily grad programs or degrees, but the later stuff these providers do that would actually help you. (retained reflexes, interoception, social thinking, narrative language, etc.) You're probably going to need to cross disciplines.

5 minutes ago, PeterPan said:

My child now has an ADHD diagnosis which I am not 100% in agreement with

ADHD is a diagnosis of exclusion and not really a tight, evidence-based, reproducible thing. As if much of the DSM is, but don't get me started. So the better question is how far this goes, whether there are SLDs, whether there are other global diagnoses that would apply, whether the medical diagnoses have all been caught, etc. Don't get hung up on the ADHD. They don't have to look hyper and with the subtypes they're really not telling you anything too enlightening about the actual chemistry of what's going on. 

7 minutes ago, PeterPan said:

Any parents with kids with DCD, withOUT and ASD diagnosis, how are your child's pragmatic skills? My son is social, but really struggles to understand social norms - stands too close, doesn't get nuance, humor, has black and white thinking, etc. For example he thought "having a rough day" was when he was "rough" on the playground, or if another kid had been rough with him. 

I don't get where you're going with this. It would be more reasonable to ask whether the "not ASD" assumption is correct. You can say ASD with social delay, but kids who go that way sometimes push over to ASD later anyway. Diagnoses are a rolling, imprecise thing. You might find this helpful https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  He's actually too young to tell where he's going to pan out with his profile. You are correct that if he needs pragmatics and social thinking intervention he needs them irrespective of label. The parts of the brain activated for social (per MRIs) are the same in ASD and ADHD, so the line is arbitrary. The interventions are the same no matter what the DSM label is. So then back to my point that rather than helping others you really want to put your energy into getting the best training for YOURSELF. He sounds like a dc who is going to have continuing issues pop up that need specialized intervention.

10 minutes ago, PeterPan said:

What I'm looking for here is a picture of how things can look mental health wise a few years down the road with the right "interventions."

My ds at 3 was pretty happy go lucky. At age 10 he's incredibly challenging to work with and labeled ASD2. Whatever is going on isn't going to go away. Might improve, but he is who he is. The school can aggravate it, but reality is his challenges will become more apparent as the demands increase and his ability to compensate or mask decreases.

I will say that again: His challenges will become more apparent as the demands increase and his ability to compensate or mask decreases.

Sigh. Sometimes it's the gift that keeps on giving. You get over one label and then they get another. Just roll with it. You're asking the right questions. He'll probably need more evals and more will become obvious with time. You're correct that you need to meet him where he is. I think the question of whether to homeschool is more about your larger picture. How will your work/income work out? The more significant the needs, the more the amount of time he will take and the less likely he is to be independent. So where a mom with very typical dc might be able possibly (with extreme sacrifice, hard work, sweat) to work part time or even more and get it to work through creative means, that's going to be a lot harder with more SN.

My ds needs significant structure and routine and doesn't really do any academics independently. You're not quite through enough evals yet to know what will crop up. It will become obvious over the next two years or so. I think if you can be fully available to him 4-6 hours a day and if he can have 1:1, highly interactive care that will talk with him to develop narrative language, keep him moving (for the DCD), etc., then you have a workable path. But the more the needs, the more he needs that 1:1.

There's a really basic book you might look at                                             Beating Dyspraxia with a Hop, Skip and a Jump: A Simple Exercise Program to Improve Motor Skills at Home and School Revised Edition                                       The thesis is that 80% of the dyspraxia symptoms can improve by increasing STRENGTH to a basic level.

15 minutes ago, PeterPan said:

I was always frustrated because the OT would send him to a swing or wrap him in a "body burrito" versus actually work on handwriting. I know there are kids with real sensory issues, so I am not saying that isn't something to consider, but in the case of my son, he didn't need "body burritos" in his curriculum based Pre-K.

Ok, so here's the thing. The therapies are all disjointed, and the only person who actually sees your dc as a whole (besides you) is the behaviorist or BCBA. That's actually their gig, to coordinate care. Given the level of questions, I would want some screeners for development and adapted living. There are tools like the Vineland and a couple others that a BCBA can run. There's also the VMPAC. There were a lot of things that I knew weren't quite right that I couldn't pin down or get anyone to care about. The behaviorist came in with these developmental screeners and they were ASKING the very things I had been telling people weren't right!!! 

So you're in for the long haul. You've got this. It isn't going away, but you'll be able to work with it and help him. I think the question of the school vs. you doing that 4-6 hours is just what you think is best for your family. There can be stages. Can he go to the school where he's currently going to camp? What are they like? 

No, some kids do not fit well in any one school. A dc can have a certain level of intellectual need that would mean one type of school but need behavioral supports (for emotional regulation, problem solving, breaks etc.) that require another school. So in my ds' IEP, for many years it said they would put my gifted ds in an ED classroom. That really bites. That was his reality and why he wasn't enrolled, because I couldn't get any single setting prepared to handle his mix. My ds has apraxia (the verbal end of your larger DCD) and ASD2 and SLDs. He's a real pistol, lol.

I think when you look at all the options and really think about what he needs, you'll know what you want to do.

[Heathermomster]

-My DS turns 20 yo in November.  He was in the 10th grade when we found a ped PT that seemed to really understand motor based issues and their affects on behavior.  DS was diagnosed with multiple SLDs as an 8 yo, but some of what we were seeing felt off, like we were missing a vital piece.  The ped PT seemed surprised that DS was not diagnosed with DCD.  And so that you know, my DH's family has a history of bi-polar disorder, SPD, and dyspraxia while DS was diagnosed with dysgraphia.

As a young student sitting in a classroom, son bounced around and was unable to sit correctly in a chair.  He was highly uncoordinated.  Though he loves sports, DS was never picked to be on a team during recess.  Peer rejection became a secondary issue.  It was annoying and hurtful, but we managed it.

Probably the best things that we did for DS were threefold:  accommodation, therapy work, and service.  DS was accommodated by coming home to homeschool where he typed or I scribed his school work, assignments were modified/shortened, and his subjects were taught in a way that suited his learning style.  Over time, he became functional and was able to successfully complete his school work alone.  I tomato staked him for years.  Therapy work included meeting with a writing tutor for 2 years plus working with the ped PT for motor and a CBT for EF issues.  Son still periodically meets with the CBT.  While working with the ped PT, DS completed weight training, balance, and exercises that involved bilateral coordination, and the results have been life changing because he now sits properly and knows how to swim. Lastly and from an early age, DH and I reduced his focus on himself by fully including DS with work around the house and assuming service responsibilities at our church and within our community.  DH and I both served on son's cub scout steering committee.  DH coached son's Upward soccer and flag football teams.  DH and DS have a very good relationship.  My son is a valued and respected member of our church's ministry and has ample opportunity to deal with loving adults that are not his parents.  Son also enjoys a healthy friend group.  Ironically, his peers are the same young children that used to exclude him from participation in recess games.  As a young adult, my DS is extroverted and doesn't suffer from any obvious social issues. 

Looking back, I suffered a ton of angst over my son's SLDs and motor based issues.  With appropriate supports, he has been able to do well so far.

ETA:  I have been reflecting on this more.  DH and I nurtured son's hobbies and interests. 

 

Edited June 26, 2019 by Heathermomster

[Heathermomster]

To answer your questions, my DS does not struggle with understanding social norms and is extremely funny.

My DS is diagnosed ADHD inattentive, and I don't agree with that diagnosis; however, I roll with it because his processing speed and working memory scores are low.

My DS presently serves on his uni's SGA and is an officer in his fraternity.  He's an extrovert, so I don't see setbacks from 8-10 years ago to be a current problem.

The one thing that I regret is not taking him to a really good ped PT sooner. ETA: I also regret not working with a CBT for EF issues sooner.

Pulling DS from the classroom so that I could accommodate him without the stress of the classroom was the best thing we could have done in our situation.  By pulling DS from the classroom, he was able to meet with the therapists that he needed during the day.  DH and I worked hard to ensure that he maintained relationships with peers outside the home.  As DS hit high school, he was able to attend co-op classes following a university model.

Lastly, outside of voting in every federal election, I have done nothing political to draw attention to SLDs.  I seriously doubt DS would have ever wanted to attend a camp for kiddos with DCD.  

Edited June 26, 2019 by Heathermomster

[jrhodes]

I replied to the other one, but I'll join in on this new too 🙂  I've got nothing to really help since we're in the beginning stages, but lots of support and wine! 

[Storygirl]

Interesting,, nwahomeschoolmom, that the list of diagnoses that you listed in your post almost exactly matches DS15's list, and he just received an ASD diagnosis. The psychologist said it's fairly common for her to see teens who have gone years with one diagnosis added to another, until they have this big list, dancing around the root issue of autism. I think that when people are high functioning, evaluators tend to want to avoid the "big" diagnosis if they can explain symptoms with something else instead. It's common.

I'd have to go back and read the original post again, because it's been a long time since I've seen the details. There are definitely times when DCD disorder and other conditions stand alone, without autism. But when you start to pile up one diagnosis on the other, it can make sense to have someone look at the whole picture to see if there is a more global explanation. Anyone can look at the actual DSM-5 diagnostic criteria for ASD online and consider whether their child might fit the description of symptoms. You can also find examples online that describe what the symptoms can look like, because it's not always clear to laypeople how psychs interpret the wording.

The last time I looked up an explanation of DCD online, I thought a lot of it sounded like it could cross into autism. Some descriptions add a list of learning issues to the main physical gross and fine motor issues. The issues that go beyond physical coordination start to sound a lot like a description of what could be autism:

https://en.wikipedia.org/wiki/Developmental_coordination_disorder

I know wikipedia is not a reliable source; I'm just using it as an example. You can find other descriptions like that online, but I don't have the time to sort through them right now.

ETA: DS15 had DCD on his list of previous diagnoses.

Edited July 3, 2019 by Storygirl

[Lecka]

 Nwahomeschoolmom — it sounds like autism to me.  

My understanding is that what was Aspergers in DSM 4 is overwhelmingly autism spectrum in DSM 5.

I think you could go to a different psychologist and have an autism diagnosis.

I also think, maybe, because I think this has come up on this board..... if you had more documented social issues from being in public school, he would get a diagnosis.

It just means you are a good mom and help him, and so he doesn’t have as many problems.  It is totally, 100% desirable and appropriate, but it doesn’t help with getting a diagnosis.  

[Lecka]

Personally I don’t care for being stuck in a limbo with a diagnosis, that is my main reason for thinking it would be good to just get a diagnosis!  When it seems pretty clear.  If you are at a point of saying “he would have Aspergers it that were a thing” plus other things you have said in the past — that’s my opinion.  

[PeterPan]

11 hours ago, nwahomeschoolmom said:

There used to be a condition called "Aspergers" that your son, as well as mine, might have been diagnosed with.  Now there is an alphabet soup of diagnoses to take its place (ADHD, OCD, SPD, DCD, Tourette's, ASD all have overlapping symptoms...I'm sure there are others.).

As the others are saying, Aspergers under DSM4 is ASD under DSM5. The only situation that was wishy-washy, with some people pushing over to ASD and some not, was the pdd-nos diagnosis. And then I thought I read the stat was 70% of pdd-nos would go ASD upon re-eval. 

11 hours ago, nwahomeschoolmom said:

He probably won't qualify,

They should qualify him simply because it's obvious, however you're correct that pragmatics testing (SLDT, whatever) is unreliable (inaccurate, under-identifying kids) until about age 10. My ds "passed" the SLDT at age 6 with a raw score of ONE. At 9 he finally failed it spectacularly, and his current DSM label is ASD2. On the ADOS his scores are in the Kanner autism range, classic autism. But he "passed" the SLDT at age 6 because he could get out one thing that got him one point. What a crock.The ps SLP doing the eval literally sat there apologizing because she knew it wasn't accurate but didn't have a way to get us the data to show it. I haven't seen the new CAPS to know if it is accurate at younger ages.

Like the others, I would say it's pretty obvious he'll go to ASD, just a question of when. Since the interventions for social thinking, emotional regulation, etc. are the same anyway (whether you call it ADHD with social delay or ASD), I would definitely be using best practices and working on everything you see. And it sounds like he's aware enough that evals would be useful to him at this point. My ds is oblivious, so evals were to help us help him. But your ds is actually saying he has deficits and seems open to strategies. So at this point evals and someone prepared to work with him on his level (a phd psych, phd BCBA, don't screw around) would be good. You could get the training or read the books and do it yourself too. Just connecting with that good fit person will give him more voices.

Edited July 3, 2019 by PeterPan

[Mimi50]

I am 50 years old and have DCD. No I don’t have Autism. So very possible that your son doesn’t either. I do have dyscalculia and dysgraphia. Received both special education services and physical therapy. In elementary school. I had hard time catching balls and anything requiring large motor skills. I didn’t learn to drive until I was 20 years old. But I did graduate from high school. Have worked in childcare and I am married with 25 year old son. This is treatable disorder but it is life long. 

[Rosie_0801]

1 hour ago, Mimi50 said:

I am 50 years old and have DCD. No I don’t have Autism. So very possible that your son doesn’t either. I do have dyscalculia and dysgraphia. Received both special education services and physical therapy. In elementary school. I had hard time catching balls and anything requiring large motor skills. I didn’t learn to drive until I was 20 years old. But I did graduate from high school. Have worked in childcare and I am married with 25 year old son. This is treatable disorder but it is life long. 

It is against forum manners to resurrect years old threads. The person you are responding to has not signed in for four years.