Wednesday, August 21, 2013

Dyspraxia, Motor Planning, and Obstacle Courses

Many children with Down Syndrome have motor planning difficulties. We sought out specialized speech therapy for Zoya for oral motor planning difficulties (known as apraxia) and she's always been on the clumsy side. She has some gross motor planning difficulties, but not anything outside of the norm for what a child with Down Syndrome may demonstrate. 

Over the past year and a half, we've worked SO HARD with Mila in her therapies and at home to reach milestones that seemed to come a lot easier to other kids (even other kids with Down Syndrome). For the longest time I couldn't describe what was different about Mila and her learning style. Mila is very intelligent. Therapists who know her well almost always tell me after a few months of working with her that they underestimated her abilities/understanding. Upon first glance, it sometimes seems as if she's not understanding things simply because she has trouble demonstrating her understanding of them. Mila took longer to pick up on sign language than the other girls, her gross motor patterns took a lot more time and therapy to learn, and she has a very hard time generalizing skills (if she learns something one way or in one setting, she can't carry it over to a new setting). I could always see in Mila's eyes that she understood so much more than she could demonstrate, but couldn't understand why. She requires a lot more repetition in order to learn skills such as eating with a fork, crawling, completing simple shape peg puzzles, etc. Autism entered my mind a few times, but from my special education background, I knew that was not an accurate diagnosis for Mila for many reasons. Recently, we started introducing PECS to Mila as a form of communication (I will post more on this another time) and the therapist and I were discussing Mila's unique learning style. She was able to pick the correct picture card as long as she was sitting at the table where we had practiced this skills over and over and over (and over and over and over) again, but if we moved to the floor, presented her with the same materials and asked her to do the same thing while laying on her belly, she could not do it. We were scratching our heads trying to figure her I feel like I've been doing since we've known her. 

After talking with her fabulous occupational therapist (who has worked with Mila since day 1)....she mentioned DYSPRAXIA. It all made perfect sense. She gave me some reading material and I read, "When asked to simply play, without being given specific directions, these children may not initiate any activity or they may initiate activity that is habitual and limited or seems to lack a goal......wander aimlessly, perform simple repetitive actions such as patting or pushing objects around....randomly pile up objects with no apparent plan......for children with dyspraxia, skills that most children attain rather easily can be excessively challenging....these skills can be mastered only with high motivation on the part of the child coupled with a great deal of practice far more than most children require...."

Check out some symptoms of dyspraxia in early childhood here. Mila demonstrates many of these symptoms much more than her sisters and other children with DS that I've worked with. Like most diagnoses, there is a spectrum and some people struggle more than others.

Since then I've researched quite a bit and weather or not Mila ever has a formal diagnosis of Dyspraxia, she very clearly has motor planning issues that go above and beyond what are typical, even in a child with Down Syndrome. Part of the diagnosis for "dyspraxia", though, is that children have these difficulties which can't be explained by a developmental disability or medical diagnosis. Some would argue that she has these difficulties simply due to Down Syndrome, or her minor brain difference that showed up on an MRI. So, all that to say, call it what you want, but Mila struggles greatly with motor planning which sometimes makes it difficult for her to learn new things or to demonstrate what she really does know. Many kids with DS struggle a little with this, but Mila struggles a lot more than most (from my experience). And knowing this and being able to put our finger on it has really helped drive us to know how to help her better! For Mila, this means we have to teach a skill many times in many different settings and changing all the variables (for example, using a fork in her right hand at the table, at the high chair, using her left hand, with a bowl, without a bowl, with a plate, with a plastic fork, with a metal fork...on and on and on). If we want her to learn the skill we have to specifically teach it in every way because she has trouble generalizing skills; every little change throws her off. She ends up at the same point as children without this difficulty, but it takes a heck of a lot more work and dedication to get there. Mila has recently had a surge in motivation, which I think directly relates to her HUGE gains as of lately (she is signing, starting to talk, starting to walk, etc.) I have a love/hate relationship with these motor planning issues....I love them because it makes those milestones EVEN SWEETER because we all work even harder to get there and because my love and admiration for Mila only grows stronger watching her work SO HARD to achieve these milestones, but I hate them because it makes life harder for her and likely always will.

Our occupational therapist suggested obstacle courses to assist with motor planning development (among other things). We did some of this with Zoya when she was younger and really, obstacle courses are just a really good activity for kids with Down Syndrome (and other special needs, or no special needs at all!) They work on the sensory system, motor skills, motor planning, problem solving skills, attention skills, and on and on :) 

Here are some pictures from one I set up for the girls. Sofia and Zoya LOVED it and went through it about a billion times....Mila hates the tunnel and will not yet crawl through it, but figured out after a bit of help, how to crawl under the desk and up onto the cushion (which was her favorite part). She also enjoyed cheering her sisters on :) We made a makeshift tunnel for Mila using a blanket over the couch and ottoman so that she could still crawl on a familiar surface (she hated the tunnel because she didn't feel safe on the silky bottom). After they got bored with the course (a solid 30 minutes!!!) I put a slide at the very end and that motivated them to keep going through it for another 15 minutes!  They ALL napped well that day! 

You want me to WHAT?!

You are CRAZY if you think I'm going in that tunnel!

I am a REALLY GOOD cheerleader, though, mama! 

Good enough? :) 


  1. Love Mila's expressions! I had no idea (even with your past posts)just how hard sweet Mila has to work on certain things--ty for explaining it further. Mila, you are such a smart and determined little girl that I KNOW with God's help and the love of your family, you are going to continue to amaze everyone you come in contact with (and even those of us you don't lol!) Lori

  2. I've noticed in pictures lately that Zoya is wearing a chewy tube. They are great! I just wondered if you'd ever seen the ones that look more like regular jewelry. I was thinking you might be interested that as she gets older, if she still needs the oral motor input (more acceptable at school):

    1. I actually had a really cute pink butterfly one picked out that I was going to get for her if our experiment worked, but it didn't, unless I defined successful as telling her 789 times a day to chew her chewy instead of her yah, it was an attempt to get her to stop biting her nails by replacing with appropriate behavior, but it didn't work. I used what we had to see if it was worth buying a cute one or not for her, the answer is "or not" LOL! Oh well!

  3. Ah well! It was worth a shot! You could do what Mama's all over the world do and get that nasty tasting nail polish...that would have to deter the nails in the mouth, if not exactly providing a suitable alternative behavior to meet whatever oral input she's needing!