Menu
Jump to content

What's with the ads?

kbutton

Talk to me about Developmental Coordination Disorder

Recommended Posts

  • Especially how it shows up and affects school
  • What you do to work around it
  • Helpful therapies
  • Co-morbid issues (speech, language issues, ADHD, etc.)

I am interested in hearing about those things especially, but really, just talk to me about your experience. We're thinking this is one of the possible labels my younger son might receive.

Share this post


Link to post
Share on other sites

DS has dyspraxia (another common word for DCD from my research). We had pretty minor signs throughout toddlerhood, mostly displayed as mild developmental milestone concerns, though never official delays. He also acted hesitant or less desirous to do doing certain physical activities in young childhood that, in retrospect, was a sign of inability or difficulty to do certain physical things, not just or only for lack of desire as we thought previously. In preschool he didn't want to color much and through early childhood activities from public school that required coloring he would scribble to get it over with. Cutting was difficult as well. Riding a tricycle was difficult, as was a scooter, tying shoelaces, going on monkey bars, and bike riding too. (He also had prolonged normal stuttering but IDK if it was related as there were a lot of other things contributing.). Many physical activities were portrayed as an unwillingness to do, which led to me not doing a lot of those activities as he really had no desire so I didn't press the issue until we had a diagnosis and then knew we had to work on those skills separately and intentionally.

 

Clumsiness is mild with mostly tripping on sidewalks but which caused fear of getting hurt and even less desire to take risks. Walking down steps one leg at a time took a few extra years to accomplish naturally (three is an average age but he was six).

 

School wise the biggest issue is handwriting with a contributor to dysgraphia. DS has a desire to draw but cannot. Yet. My biggest lesson over the years is, for DS at least, he can do everything so far but it takes more time and effort. And a year in public school and occasionally being around NT peers puts a damper on his spirit and fear of failure. He sees he cannot do things like others and it's discouraging. He's also gifted so YMMV, for DS to try something and get it wrong is heart breaking for him and frustrating. But he can do things, it just takes practice and perseverance.

 

Best therapy for DS we have found is gymnastics. He loves it and we go twice a week usually for the last year. It's fun, low pressure, but has gradually helped with muscle strength which can assist some deficiencies. And it requires whole body use and coordination, plus body awareness, etc. We also do swimming but because DS likes gym better it works better for us. We will switch to martial arts as an alternate sport if one of those doesn't work out. We go to therapy sports four times weekly. I would do five or six but haven't yet figured out a schedule for that. OT was helpful but we had to stop official OT and I get ideas from Pinterest as well as therapy books and websites. There are some books and therapies on dyspraxia on Amazon, most are thin or light reading and getting one or two will be an intro but physical therapy textbooks are the most useful IMO. I recommend an OT Eval to see where his deficiencies are to focus on those.

 

PS was a disaster. Our PS required an insane amount of writing but had no direct instruction in writing. I oversee every piece of handwriting to make sure letters are formed correctly each time. It's painful but I limit to 15 min per day. Typing we've started but are just playing with, and we'll start cursive too in a month or so.

 

Comorbid visual motor problems are currently in disagreement among professionals, plus dyslexia, and giftedness. A CAPD and possible NVLD will be evaluated within a year or so.

 

I scribe everything for him except handwriting. Spelling is with tiles or oral dictation. Artwork is crafty kits mostly. I incorporate a lot more therapy skills into daily life and school work. School therapy may involve beading spelling words, stamping spelling words, cutting and pasting, etc. these things most kids do naturally but it's difficult for DS and I have to force incorporation. I have him do fine motor activities daily (opening doors with keys, manipulating coins for daily math, card games, using lots of manipulatives during math even if he doesn't need to, Lego work with school, soon Lego education). I buy games that have fine motor components like operation, laser maze.

 

Sorry so long but I hope you get some ideas.

 

Btw, the main Harry Potter actor (eta Daniel Radcliffe) has DCD. There are a lot more British resources than US as it doesn't seem to be a common diagnosis here outside of a developmental pediatrician office or Neuropsych I think.

 

If DS were back at preschool age and we had a suspected diagnosis, things I would have done differently would be to have some daily gross motor activities that focus on deficiencies (longer tricycle rides, glider bike rides, scooter rides). And daily therapy sports with swim, gym, or martial arts, the big three recommended for dyspraxia. I would do direct HWT instruction for handwriting and daily hand exercise therapies (daily cutting, maxes or other pencil skills). I would not send to PS unless they had direct consistent handwriting.

 

I would be more patient and less anxious. For us, time and consistent efforts have made the biggest difference.

 

Sorry for typos, on my phone!

  • Like 5

Share this post


Link to post
Share on other sites

Ran out of likes but awesome post displace.

Thanks. :) I had insomnia and put it to good use. I have been reflecting lately and personally growing in knowledge. I felt I had to share. It's hard to shift focus sometimes and encompass all the new things we learn about and it seems to take a while to get it all aligned to implement.

 

Another suggestion for DCD, make sure your insurance has a great Therapy benefit. We stopped because it only allows maximum two months of treatment for acute conditions. Some insurances cover vision therapy, Neuropsych testing, months and months of OT, SLP, and PT. seek diagnoses at a children's hospital affiliation or medical school affiliation unless you have a super expert where you live. We had problems diagnosing with poor providers for a year, then therapy only gave us two months. Now we will buy outside insurance to ensure coverage but it's something that should have been done 1-3 years ago.

 

And also try to decrease "should haves". Which is easier the earlier you implement anything. And keep in mind that some things may be difficult for a long time or forever, but milestones that are reached are now part of your child's toolbox. Once a tricycle is accomplished it's a skill learned. Then move on to the next skill.

Share this post


Link to post
Share on other sites

Thanks. :) I had insomnia and put it to good use. I have been reflecting lately and personally growing in knowledge. I felt I had to share. It's hard to shift focus sometimes and encompass all the new things we learn about and it seems to take a while to get it all aligned to implement.

 

Another suggestion for DCD, make sure your insurance has a great Therapy benefit. We stopped because it only allows maximum two months of treatment for acute conditions. Some insurances cover vision therapy, Neuropsych testing, months and months of OT, SLP, and PT. seek diagnoses at a children's hospital affiliation or medical school affiliation unless you have a super expert where you live. We had problems diagnosing with poor providers for a year, then therapy only gave us two months. Now we will buy outside insurance to ensure coverage but it's something that should have been done 1-3 years ago.

 

And also try to decrease "should haves". Which is easier the earlier you implement anything. And keep in mind that some things may be difficult for a long time or forever, but milestones that are reached are now part of your child's toolbox. Once a tricycle is accomplished it's a skill learned. Then move on to the next skill.

This I need to be more mindful of.  Less of the "should haves" and more of the "what have we learned and what are we implementing effectively" type mindset.  

 

Also, the last is huge.  DS had all those odd, quirky issues with coordination that weren't truly "bad" so people chalked it up to lack of interest or being a bit picky or in DH's case he thought DS was too "babied" and that was why he struggled a bit with things like pouring or bike riding or tying a shoe lace, etc.  Once we realized there really was more going on, we got him into Karate and swimming and roller skating  and all of those were a huge help.  (Private instruction first or concurrent with group instruction was necessary both to reduce anxiety and to get him the targeted, one on one practice he needed to truly master the movements but it was worth every penny).  And now he has those skills in his toolbox.

  • Like 2

Share this post


Link to post
Share on other sites

For me, reading about DCD online is depressing. By the numbers, it seems life outcomes are horrid and these individuals have no friends or meaningful lives; however, BIL was diagnosed with dyspraxia and is quite successful, if graduating from the University of Chicago and working in the NYC financial district matters. His most significant issue is ADHD, which makes his wife crazy. BIL hires a person to help him keep up with work demands ie appointments and scheduling. Personal relationships are very important to him.

 

Last fall, the PT mentioned that DS has DCD. DS has injured himself multiple times over the years, and we've had several ER visits. He never crawled and has issues with visual accommodation and bilateral coordination. He has finally learned to swim well enough that I don't freak when he gets in water. DS is clumsy but loves sports. When he sat in an NT classroom, he carried his own football or Frisbee to school. This gave DS control so that he could pick his own team and not feel left out. DS has mixed dominance and learned to ride a bike when he was in 1st grade. OT discovered three retained reflexes.

 

As far as academics are concerned, DS tests gifted with 3 SLDs. EF and inattentive ADHD are challenges for DS. In spite of that, he does well in school with accommodation and hard work. If I could go back in time, handwriting would not have been pushed and we would have worked with a pediatric PT much sooner. DS makes and keeps friends easily.

  • Like 1

Share this post


Link to post
Share on other sites

This is all helpful. I will try to comment later, but we have tons of stuff going tonight and tomorrow. Thank you all, and feel free to keep discussing without me, lol!

  • Like 1

Share this post


Link to post
Share on other sites

BTW, this is really helping with symptoms I overlooked--there was an "explanation" for so many of them that I didn't really see them. 

  • Like 1

Share this post


Link to post
Share on other sites

Both of BIL's kiddos have SPD and have spent 2.5 years with an OT. The youngest is ADHD w/impulsivity, but I'm not certain about the eldest.

 

Both of my children have some motor planning issues, low tone, high pain thresholds, and a weird food texture thing going on that did not seem to be huge enough to be addressed by the OT or ped PT that they worked with. Bipolar disorder affects at least two members of DH's family too.

 

Eta: DS has done IM and prim reflex reintegration exercises with OT. Real differences were seen with a ped PT that worked on static/dynamic balance and postural exercises. Prior to PT, the kid could not sit correctly in a chair and would literally fall out of his seat. The PT also addressed his left side weaknesses through strength training and cross body exercises. Son's swimming, handwriting, and posture all improved with PT. DS still struggles with going up and down steep stairs and knocks things over, but he is way better now.

  • Like 1

Share this post


Link to post
Share on other sites

 

  • Especially how it shows up and affects school
  • What you do to work around it
  • Helpful therapies
  • Co-morbid issues (speech, language issues, ADHD, etc.)

I am interested in hearing about those things especially, but really, just talk to me about your experience. We're thinking this is one of the possible labels my younger son might receive.

 

 My ds is 9 years old and was diagnosed with a motor planning issue of speech when he was 3 or 4 years old. He continues to be in speech due to difficulties with articulation. When he was younger I was concerned there might be some dyslexic tendencies (he had an excessive number of reversals for a while) but currently he reads and writes above grade level. HIs handwriting though is labeled as "Developing"  by his public school teacher. I blame that on the motor planning issue. When he was younger he use to discuss his difficulties with speech -- he recognized that how he was speaking wasn't what was in his head. 

 

Learning to ride his bike has been challenging. He had to ride his bike daily or else he would lose ground in his bike riding ability -- similar to what I see when teaching children with Dyslexia how to read -- they tend to lose ground from one day to the next if a skill isn't truly mastered. 

 

Since he was showing no signs of doing sports we found a local martial arts facility and he does that about 3-5 times per week. His older sister is moving through the belts faster and part of the reason is that it takes him longer to learn the skills. It is clear his brain knows what he should do but his body can't quite make the motion -- that is the motor planning problem. 

 

Currently he is also doing swim lessons -- he's had to repeat every level at least 1x and one he repeated 2x. He is doing well but it took direct instruction for him to get this far. So far he's done it year round for almost 1 year and has gone through 3 levels during that time -- my older girls moved through levels each session. 

 

I've got ADHD,Dyslexia and language processing in my family (my dh and my mom among many others) and he shows no signs of any of the above. He's very organized (although normal active kid), and a planner. He reads well above grade level currently.  He doesn't have any sensory issues -- although as I said earlier, he struggles in handwriting.

 

I hope that helps. 

  • Like 1

Share this post


Link to post
Share on other sites

Here is the text to a Facebook post I created earlier this year. It is pertinent so I will post it here. 

 

 

"Here is my son riding his bike. You might wonder why this is a big deal-- all 9 year olds can ride this bike unless they have an obvious physical challenge. 

For him, with Dyspraxia, a not so visible motor planning problem, physical activities are hard. He needs a lot more repetition and he can lose physical skills unless he practices a lot more then most. You hear it in his speech and see it when he does a sit up. He's finally able to ride around the block (except for the hills) but if we skip more than 2 days he struggles again. He did not like to ride his bike for the first year but now he enjoys it. 

Karate has done amazing things for him. The consistency of the exercise and patience of the teachers is paying off. We signed him up for swim lessons and, although he's repeated every level, his progress is amazing. He loves to be in the water and he is safe.

I have a child who is a competitive gymnast who works really hard in her sport and you can see the results of that hard work in her videos. 

I have a son who has to work really hard just to do the typical childhood physical activities but there aren't amazing videos for what he can do that he couldn't do before. He is amazingly hard worker, too.

I am very proud of him."

 

Forgive the grammar -- this is not a good example of my writing. 

  • Like 1

Share this post


Link to post
Share on other sites

This is all great information. It also sounds like you all needed to talk--I am really glad you are willing to share about your kids. So far, my son is not frustrated with a lot of motor stuff, but we are struggling with school. Part of it is language, but I think part of it is that trying to scribe all day makes things harder to schedule, and working alone when handwriting is so tough is next to impossible for very long.

 

My son has always been a "Let's try that again" kind of kid if there is something he wants to do. He doesn't let being slow to pick up a skill keep him from doing that, but he is a very easygoing child in that way. There are some times he whines or just tuckers out though, and we are seeing much more of that at skills get more complex. Even though he is acquiring them, there are more and more to learn all the time. Thankfully, he has fewer direct comparisons with homeschooling, he's got great social skills, we already have other family quirks that mean he's just one of the gang (and friends who have issues too), and he's motivated to do well. I think all of that has given him a lot of buffer.

 

Share this post


Link to post
Share on other sites

We are dealing with SPD and DCD. SPD can take a lot of forms--the vestibular and procioreceptor issues here seem to have some overlap with the DCD ones whereas the the over sensitivity to smell, etc. seem to be more easily labeled as sensory.

 

For ds, the DCD is most evident in schoolwork with dysgraphia, slow processing speed, and problems in math.

 

Sorry I don't have time for a longer post right now....will try to chime in later on with longer and more coherent thoughts. For us, OT focused on sensory work and VT have been the most helpful. Remediation through other arenas has been a lot slower in coming. For us, focusing on a sensory diet and working on resolving retained primitive reflexes has been helpful.

  • Like 3

Share this post


Link to post
Share on other sites

Doh! I forgot to ask if the OT or PT at school could check for retained primitive reflexes (we're doing evals through and NP and the public school--had OT last year). Thanks, prairiewindmomma!

 

 

Share this post


Link to post
Share on other sites

Kbutton, you ask about how DCD affects schooling.  Like Prairie, my boy struggles with low processing speed, math, and handwriting.  I don't know of any specific therapies to address those issues outside of accommodations like scribing/typing/Dragon, reduced problem sets, extra time, and direct explicit instruction.  We hired an awesome Wilson tutor for reading.  

 

I have stated this before in other threads...We spend a great deal of time discussing/implementing strategy and work arounds toward functional living and school work.  A wicked sense of humor with patience helps tremendously.  I also have learned to manage my expectations.  Learning to handle DS has been wonderful for DD because she benefits from all the helps that DS did not receive early on.  There are times that I am wracked by guilt over my DS.  DS is a great kid.  In spite of everything, he seems OK with himself.  He met with a child psych 6 weeks back for a meds consult and she seemed genuinely surprised that DS was so normal.  

 

Funny story.  Last year,  DS decided he wanted to wear contacts so I took him to the optometrist.  The optometrist would not let us leave the office until DS proved he could place the contacts in his eyes and remove them.  It took DS two full hours to do that.  My then 6 yo and I just sat there periodically calling DH to provide updates.  It was nutso and I did not think we would ever leave.  We have learned to roll with situations.

 

  • Like 1

Share this post


Link to post
Share on other sites

Dyspraxia (and SPD & hypermobility) run in my family. My brother is the most severely affected. He struggles with motor skills, maths, things like telling the time, reading a timetable etc, his handwriting is dreadful and he is just generally poor at organising himself. He was undiagnosed until his early 20s, he was repeatedly tested for dyslexia, we're old enough that I guess it wasn't that commonly known about. He has found that he's got better at certain things in his late twenties and thirties. He struggled to get started in the world of work, started and dropped out of uni and floundered for a bit, but then found a job in his favourite field (IT) and has done really well. He's been promoted lots of times and is training other people. He actually outscored the tutor in some in-house training recently, the tutor was miffed about that and I'm not sure why she told him. I think it's really important to exploit the things you are good at and see where it can go. My brother might have done better earlier if he'd had more of a vocationally based training, rather than an academically minded one. He never had issues making friends and has a tight friendship group from school even now in his 30s.

 

I have dyspraxia too but it affects me mostly in gross motor skills, it took me 6 yrs to learn to drive and I'm very clumsy. I do OK academically except maths. I was always someone who did well enough to not be noticeable but never really excelled. It was a shame because I love maths and physics but my need for help was never recognised. I am quite untidy and my mum puts this down to the dyspraxia. There's some stuff that I just don't understand, like things that have a directionality, such as switches.

 

My daughter is similar to my brother but with the benefit of recognition for a long time. She was late to walk, run and jump. One of the best things we did was get a wobble board and balance beam at home when she was about 4. It only took a few weeks of daily use to see a noticeable change and her balance is pretty good now, way better than mine. She can ride a bike/2 wheeled scooter but it's taking her longer than is normal to learn to roller blade. Her maths is really bad but she is strong in language arts areas so we are finding Memorise in Minutes useful for times tables (which is little stories). 

 

My personal experience of trying to teach someone with dyspraxia is that it's really hard for them to pick up things just by watching someone. They don't automatically have the ability to figure out how they make their body do what others are doing. I've learned to always say exactly what I want her to do, not show it or expect it to be copied automatically. It includes where exactly yu place your body, how it feels (like tension or weight of your body) where your body parts are in relation to other parts etc. My daughter really struggled at her gymnastics sessions because they just expected her to copy them rather than telling her how to do it (we didn't go long).

 

All of us in my family with dyspraxia are great with computers, they just make sense and I personally think it adds to my creativity as I  tend to think & problem solve in a slightly odd way that often has benefits. 

  • Like 3

Share this post


Link to post
Share on other sites

I don't have time to post right now, but I'm finding this discussion very interesting. DS11 has DCD/dyspraxia, SPD, ADHD, and NVLD, and dysgraphia, along with learning disabilities in math and reading. DS has many of the troubles already listed, but I've been attributing them to some of his other issues and not thinking of them as mainly caused by the DCD. Interesting.

 

DS is a competitive gymnast, and although is fine motor skills have always been poor, I never realized he was struggling with gross motor things. He's just so athletic that his troubles were masked, but when the OT pointed them out, I could see it. He has low tone and is weaker on one side of his body. He has always been liable to drop things and bump into things, but I was attributing that to the fine motor deficits and SPD.

 

When the NP first diagnosed DCD, I was surprised, because of DS's athleticism. But then the OT confirmed it. It was just hard for me to tell.

Share this post


Link to post
Share on other sites

Kbutton, you ask about how DCD affects schooling.  Like Prairie, my boy struggles with low processing speed, math, and handwriting.  I don't know of any specific therapies to address those issues outside of accommodations like scribing/typing/Dragon, reduced problem sets, extra time, and direct explicit instruction.  We hired an awesome Wilson tutor for reading.  

 

I don't think this will get us an IEP, but we have speech that might (he still doesn't have R and L sounds at almost 8). He has CAPD. But if we qualify for an IEP, I want everything to be addressed--once we get the IEP, they will put the other accommodations in that. I don't want to miss something or allow the district to miss something. We might squeak by with qualifying for OT and PT. All of that is linked to scholarship monies here--it has to be in the IEP to get funding for it. He is borderline on so many things, but he's borderline and not below because I've worked with him really hard on handwriting and things like that.

 

If not, I guess we'll be forking over a chunk of change on our own. 

  • Like 1

Share this post


Link to post
Share on other sites

Here, speech is a primary qualifying condition. OT is not. It is easy to get as a service if you have another qualifying condition. Bc then OT can be secondary.

 

Back in 2nd grade, for my son to qualify just for OT they said they might have to put him down in the "developmental delay" category, that is the primary condition they might have put him down for. But he does not really fit that, even though he had some very low scores on the OT eval.

 

But he did qualify with speech as the primary condition and that seemed to make it all work out.

 

I think that is very local to us.

 

I am also still waiting for the meeting, but I was told by e-mail that he would qualify for an IEP with dysgraphia. The school psychologist had to e-mail the district special Ed director about that ----- it's making me feel like they have not had a lot of kids with dysgraphia only (as opposed to when it is an add-on for kids who have a different primary diagnosis).

 

Edit: he was in school OT, then he exited about a year ago, then last year he got private testing and now we are in the process of hopefully getting and IEP and accommodations. He has been observed by an OT, and the classroom teacher said that the OT was talking about an iPad and printing in the classroom for him.

Share this post


Link to post
Share on other sites

Lecka, with the tiers of the scholarship, tier 1 gets you speech.  Tier 2 is SLDs, OHI-minor, blah blah.  So no they don't qualify you for just OT, but you get in under one of the tiers and fight to make sure they do ALL the evals and get EVERYTHING into the IEP you can.  You can also have your provider amend the IEP and add services, a little known fact.   ;)  So it's dollars (based on the tier), ability use the funds for the things you want to use it for, etc.  Kbutton is being thorough and doing great.   :)

Share this post


Link to post
Share on other sites

I don't think this will get us an IEP, but we have speech that might (he still doesn't have R and L sounds at almost 8). He has CAPD. But if we qualify for an IEP, I want everything to be addressed--once we get the IEP, they will put the other accommodations in that. I don't want to miss something or allow the district to miss something. We might squeak by with qualifying for OT and PT. All of that is linked to scholarship monies here--it has to be in the IEP to get funding for it. He is borderline on so many things, but he's borderline and not below because I've worked with him really hard on handwriting and things like that.

 

If not, I guess we'll be forking over a chunk of change on our own. 

DS is borderline too.  Processing speed sub-tests of the WISC-IV and son's achievement score disparity (2+ stanines) as compared to his IQ, secured the SLD of written expression diagnosis.  I actually think dysgraphia is the most inconvenient SLD to accommodate because the teacher has to work more.  There was a notable shift in the 5th grade staff and their desire to help.  This was in a private setting.

 

Neither of my kiddos have speech articulation issues.  Both have had about 7-8 sessions with OT and 8-9 sessions with the pediatric PT.  Insurance with co-pays covered the costs.  We set up a medical savings account so that saves us some pre-tax money.  I had no idea that kids could be so costly.

Share this post


Link to post
Share on other sites

DS is borderline too.  Processing speed sub-tests of the WISC-IV and son's achievement score disparity (2+ stanines) as compared to his IQ, secured the SLD of written expression diagnosis.  I actually think dysgraphia is the most inconvenient SLD to accommodate because the teacher has to work more.  There was a notable shift in the 5th grade staff and their desire to help.  This was in a private setting.

 

Neither of my kiddos have speech articulation issues.  Both have had about 7-8 sessions with OT and 8-9 sessions with the pediatric PT.  Insurance with co-pays covered the costs.  We set up a medical savings account so that saves us some pre-tax money.  I had no idea that kids could be so costly.

 

We padded our HSA's for emergencies and such by paying out of pocket for things rather than using HSA money. We fully fund it each year. I am SO glad we did that. 

Share this post


Link to post
Share on other sites

DS is borderline too.  Processing speed sub-tests of the WISC-IV and son's achievement score disparity (2+ stanines) as compared to his IQ, secured the SLD of written expression diagnosis.  I actually think dysgraphia is the most inconvenient SLD to accommodate because the teacher has to work more.  There was a notable shift in the 5th grade staff and their desire to help.  This was in a private setting.

 

Neither of my kiddos have speech articulation issues.  Both have had about 7-8 sessions with OT and 8-9 sessions with the pediatric PT.  Insurance with co-pays covered the costs.  We set up a medical savings account so that saves us some pre-tax money.  I had no idea that kids could be so costly.

 

I think for a diagnosis, we can use discrepancy with IQ, but that is not necessarily what will work with the school. My son's processing speed is in the single digit percentiles. 

Share this post


Link to post
Share on other sites

I think for a diagnosis, we can use discrepancy with IQ, but that is not necessarily what will work with the school. My son's processing speed is in the single digit percentiles.

Does the school lose money when the homeschooled students in their district receive the funding? Honestly, if your boy doesn't get his accommodation through IEP, let's set up a Fund Me page to hire a lawyer and sue the heck out of the district.

Share this post


Link to post
Share on other sites

Does the school lose money when the homeschooled students in their district receive the funding? Honestly, if your boy doesn't get his accommodation through IEP, let's set up a Find Me page to hire a lawyer and sue the heck out of the district.

 

I have been referred to an advocate that I will contact if I think things will not go our way. Schools do not have to use discrepancy with IQ as the basis for their SLD determinations. I think that is an IDEA thing. But a psych will do that. It's a weird thing, but it's not against the law. 

 

I don't think they lose direct funding, but I don't know. 

Share this post


Link to post
Share on other sites

Here is the text to a Facebook post I created earlier this year. It is pertinent so I will post it here.

 

 

"Here is my son riding his bike. You might wonder why this is a big deal-- all 9 year olds can ride this bike unless they have an obvious physical challenge.

For him, with Dyspraxia, a not so visible motor planning problem, physical activities are hard. He needs a lot more repetition and he can lose physical skills unless he practices a lot more then most. You hear it in his speech and see it when he does a sit up. He's finally able to ride around the block (except for the hills) but if we skip more than 2 days he struggles again. He did not like to ride his bike for the first year but now he enjoys it.

 

Karate has done amazing things for him. The consistency of the exercise and patience of the teachers is paying off. We signed him up for swim lessons and, although he's repeated every level, his progress is amazing. He loves to be in the water and he is safe.

 

I have a child who is a competitive gymnast who works really hard in her sport and you can see the results of that hard work in her videos.

 

I have a son who has to work really hard just to do the typical childhood physical activities but there aren't amazing videos for what he can do that he couldn't do before. He is amazingly hard worker, too.

 

I am very proud of him."

 

Forgive the grammar -- this is not a good example of my writing.

This is a beautiful post! :)

Share this post


Link to post
Share on other sites

This is all great information. It also sounds like you all needed to talk--I am really glad you are willing to share about your kids. So far, my son is not frustrated with a lot of motor stuff, but we are struggling with school. Part of it is language, but I think part of it is that trying to scribe all day makes things harder to schedule, and working alone when handwriting is so tough is next to impossible for very long.

 

My son has always been a "Let's try that again" kind of kid if there is something he wants to do. He doesn't let being slow to pick up a skill keep him from doing that, but he is a very easygoing child in that way. There are some times he whines or just tuckers out though, and we are seeing much more of that at skills get more complex. Even though he is acquiring them, there are more and more to learn all the time. Thankfully, he has fewer direct comparisons with homeschooling, he's got great social skills, we already have other family quirks that mean he's just one of the gang (and friends who have issues too), and he's motivated to do well. I think all of that has given him a lot of buffer.

I will say that homeschooling is def recommended. I mean, there will be schools and kids and teachers that understand and don't care. But more often the child gets asked a lot of "why can't you?" questions and naturally do a lot of self reflection and understanding that they are different. For my DS, doing it wrong is awful, working at a motor skill that may be boring is frustrating, and it's a challenge.

 

I'd recommend scribing for some things at least if you're seeing a challenge before testing. I can't see the age but good subjects are science, LA comprehension, any subjects that can be discussed orally (all subjects). If he's okay with math that may be done but ask if he'd like you to write for him and see how that helps.

 

Do handwriting as the first subject daily and break into pieces if necessary in 5-7 min lengths. Research hand and arm exercises to do during breaks just to feel better.

  • Like 1

Share this post


Link to post
Share on other sites

Calvin had a variety of labels, that being one.  The final label was dyspraxia, but I just think that that is used more in the UK.

 

He was diagnosed at four and had three years of once or twice a week therapy.  That helped a bit, I think, but Taekwondo helped more.  Hours spent playing with Lego must have done something.  Puberty also helped - his muscles became stronger and his coordination caught up a bit.  Finally, he chose to take up the bass guitar when he was about sixteen, which did an awful lot to strengthen his hands.

 

Academically: we did a lot orally - I took dictation for both English and maths.  Meanwhile we worked on handwriting every day but for short periods, using HWOT.  Slowly I had him do more writing: first he would write down ideas for a piece of work; a few months later he would write the plan; a few months after that he would write a paragraph.  But he didn't start any of that until he was about eight, I think.  Before that, it was just handwriting practice.  He learned to type early and well - Mavis Beacon - but I made sure to keep the handwriting going.

 

He went to school at thirteen and was assessed for accommodations for some lessons, and for exams.  At university he still has use of a computer for exams.  His typing his fast and his handwriting is legible.  Meeting him you wouldn't see anything different from the norm (except that his innate wonderfulness shines through, of course!)

 

ETA: no co-morbid issues.

 

Best of luck

 

Laura

  • Like 3

Share this post


Link to post
Share on other sites

Kbutton, you ask about how DCD affects schooling. Like Prairie, my boy struggles with low processing speed, math, and handwriting. I don't know of any specific therapies to address those issues outside of accommodations like scribing/typing/Dragon, reduced problem sets, extra time, and direct explicit instruction. We hired an awesome Wilson tutor for reading.

 

I have stated this before in other threads...We spend a great deal of time discussing/implementing strategy and work arounds toward functional living and school work. A wicked sense of humor with patience helps tremendously. I also have learned to manage my expectations. Learning to handle DS has been wonderful for DD because she benefits from all the helps that DS did not receive early on. There are times that I am wracked by guilt over my DS. DS is a great kid. In spite of everything, he seems OK with himself. He met with a child psych 6 weeks back for a meds consult and she seemed genuinely surprised that DS was so normal.

 

Funny story. Last year, DS decided he wanted to wear contacts so I took him to the optometrist. The optometrist would not let us leave the office until DS proved he could place the contacts in his eyes and remove them. It took DS two full hours to do that. My then 6 yo and I just sat there periodically calling DH to provide updates. It was nutso and I did not think we would ever leave. We have learned to roll with situations.

(Falling over smiley). I thought glasses were bad! Maybe DS won't want contacts...
  • Like 1

Share this post


Link to post
Share on other sites

Dyspraxia (and SPD & hypermobility) run in my family. My brother is the most severely affected. He struggles with motor skills, maths, things like telling the time, reading a timetable etc, his handwriting is dreadful and he is just generally poor at organising himself. He was undiagnosed until his early 20s, he was repeatedly tested for dyslexia, we're old enough that I guess it wasn't that commonly known about. He has found that he's got better at certain things in his late twenties and thirties. He struggled to get started in the world of work, started and dropped out of uni and floundered for a bit, but then found a job in his favourite field (IT) and has done really well. He's been promoted lots of times and is training other people. He actually outscored the tutor in some in-house training recently, the tutor was miffed about that and I'm not sure why she told him. I think it's really important to exploit the things you are good at and see where it can go. My brother might have done better earlier if he'd had more of a vocationally based training, rather than an academically minded one. He never had issues making friends and has a tight friendship group from school even now in his 30s.

 

I have dyspraxia too but it affects me mostly in gross motor skills, it took me 6 yrs to learn to drive and I'm very clumsy. I do OK academically except maths. I was always someone who did well enough to not be noticeable but never really excelled. It was a shame because I love maths and physics but my need for help was never recognised. I am quite untidy and my mum puts this down to the dyspraxia. There's some stuff that I just don't understand, like things that have a directionality, such as switches.

 

My daughter is similar to my brother but with the benefit of recognition for a long time. She was late to walk, run and jump. One of the best things we did was get a wobble board and balance beam at home when she was about 4. It only took a few weeks of daily use to see a noticeable change and her balance is pretty good now, way better than mine. She can ride a bike/2 wheeled scooter but it's taking her longer than is normal to learn to roller blade. Her maths is really bad but she is strong in language arts areas so we are finding Memorise in Minutes useful for times tables (which is little stories).

 

My personal experience of trying to teach someone with dyspraxia is that it's really hard for them to pick up things just by watching someone. They don't automatically have the ability to figure out how they make their body do what others are doing. I've learned to always say exactly what I want her to do, not show it or expect it to be copied automatically. It includes where exactly yu place your body, how it feels (like tension or weight of your body) where your body parts are in relation to other parts etc. My daughter really struggled at her gymnastics sessions because they just expected her to copy them rather than telling her how to do it (we didn't go long).

 

All of us in my family with dyspraxia are great with computers, they just make sense and I personally think it adds to my creativity as I tend to think & problem solve in a slightly odd way that often has benefits.

This post reminds me that a lot of direct physical instruction can benefit. When taking swimming, DS does best when the coach takes his arms and moves them where they should go, for example.

  • Like 1

Share this post


Link to post
Share on other sites

DS is borderline too. Processing speed sub-tests of the WISC-IV and son's achievement score disparity (2+ stanines) as compared to his IQ, secured the SLD of written expression diagnosis. I actually think dysgraphia is the most inconvenient SLD to accommodate because the teacher has to work more. There was a notable shift in the 5th grade staff and their desire to help. This was in a private setting.

 

Neither of my kiddos have speech articulation issues. Both have had about 7-8 sessions with OT and 8-9 sessions with the pediatric PT. Insurance with co-pays covered the costs. We set up a medical savings account so that saves us some pre-tax money. I had no idea that kids could be so costly.

I know about the cost! I resisted getting therapy toys and then thought how it's all just a drop in the bucket. Special gear, tools, therapies, Evals, etc.

  • Like 2

Share this post


Link to post
Share on other sites

I thought you all would appreciate my excitement that DS Voluntary rode a regular scooter a couple nights ago! I gave up on the scooter and he hasn't been on it for at least 6+ months. Then he just got on and rode for a couple houses and back! I was floored and excited. I think we're getting close to bike riding too :)

  • Like 5

Share this post


Link to post
Share on other sites

How long will the school observe your DS before the IEP is written? When DS was in 2nd grade, he would take over half an hour to complete a portion of sheet work that the average student could complete in 5-10 minutes. After 30 minutes, you could ask the questions and he'd respond with the correct answer aloud almost immediately. The IQ sub-test numbers versus achievement numbers do not lie.

Share this post


Link to post
Share on other sites

Kbutton check but I was told state law allows for discrepancy diagnosis for dyslexia.

 

I would not take him in for observation. They'll use it to screw you with an unqualified observer. Only proper diagnosis.

Share this post


Link to post
Share on other sites

How long will the school observe your DS before the IEP is written? When DS was in 2nd grade, he would take over half an hour to complete a portion of sheet work that the average student could complete in 5-10 minutes. After 30 minutes, you could ask the questions and he'd respond with the correct answer aloud almost immediately. The IQ sub-test numbers versus achievement numbers do not lie.

 

They aren't going to observe him. I mean, the OT will watch him write, but they already have (and will have in writing), how long it takes my son to do things. I am providing documentation for that, and I know this will come up in the psych report. I talked to a 2nd grade classroom teacher to find out what is typical. That allows me to discuss things in context. The intervention specialist will do some testing. A lot is observations, and they are treating me like I'm the classroom teacher. If I document it, it goes in the report. 

 

Kbutton check but I was told state law allows for discrepancy diagnosis for dyslexia.

 

I would not take him in for observation. They'll use it to screw you with an unqualified observer. Only proper diagnosis.

 

Not exactly. i have some stuff printed out from the law, the definitions, etc. It's not worded exactly like that. 

Share this post


Link to post
Share on other sites

Good luck!

 

My hair is falling out just thinking about your IEP process.   

 

Thank you! 

 

It will help when we have final reports. And DCD is a guess. But, if he misses the DSM cutoff for that too, I really think many of the strategies mentioned in this thread will help us on a personal level. We are not made of money, but we can look into private OT again with more focus now that we have more data. 

 

BTW, has anyone had luck with IM or Bal-a-vis-x with DCD kids? When we were discharged from OT, they said thought my kiddo might benefit from Bal-a-vis-x, but that clinic didn't offer it.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Thanks for finding this! I never would've thought to look, but has lots of lovely gems. My 4 yr old was just diagnosed with DCD, SPD and probably mild ASD (waiting on that one). He's currently in OT, speech and social skills. 

Share this post


Link to post
Share on other sites

I thought I would give an update to my original post, almost 4 years later, as I happened to see the old thread.  Diagnoses were: dyspraxia/dysgraphia, dyslexia, ADHD (not yet diagnosed but present based on criteria, but he didn't meet criteria until the last 1-2 years), SPD (never diagnosed but treated) and vision discrepancies (not quite meeting diagnoses for proven treatment interventions).

We did PT sports for years (gymnastics, karate, swimming), 2-3 times weekly.  DS still does karate-type sports by choice now, a few times per week.  I stopped "requiring" sports as PT about 1.5 years ago.  Sports, for us, needed to be non-competitive to give him a more leisurely pace to learn physical actions.  We did 6 months of VT with some improvement.  We did OT on and off for years.  They focused on: fine motor, attention, sensory, handwriting, eating, self-regulation, and gross motor.  OT is about to discharge him after getting more handwriting-specific help for the last 6-12 months.  She feels she cannot give more support that wouldn't benefit from time just spent practicing cursive.  We're still working on typing (years practicing that), cursive/copywork.  Continuing things we're working on: cursive, typing, minor social interaction concerns (loudness, eye contact occasionally - all stuff that peers don't really care about), self-regulation (likely as a result of ADHD), selective eating restrictions, and other ADHD typical needs (attention and endurance).  

As far as school, when we pulled out of public school he was already anxious and self-depreciating about his differences, though bright.  As he's gotten older, even though I KNOW public school was not a good option, I still wonder if we could have made it work.  We are still homeschooling.  He wants to be in public school and around peers because he is super outgoing and social, but there's still learning issues, and now they're compounding.  Multiple teachers, inability to get accommodations for typing/computers/notes, and his self-regulation.  IDK if forcing him in the public school box earlier would have made him fit and been an option now, or just made it worse.  I do know that the schools aren't doing the right thing as far as teaching reading, spelling, writing.  And even with a list of diagnoses, they only support they could give would be extra time and generic help that helps no one. 

I think with these issues, it just takes a lot of time. practice, and patience.  The kids may not have the patience, but parents need it to help their kids to continue to persevere. 

  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...