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 out....as 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.

This is a great article on dyspraxia. 

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? :) 

THANK YOU! and Questions Answered...

Wow....I am humbled by all the comments and emails from all of you followers!!! You guys rock!! So many questions, thoughts, and ideas to look into....and so much support! My favorite comment was from anonymous, "I can say as a mother of 7 that kids are just nuts. I'm not kidding, if adults showed the type of behavior that I've seen in my 16 years of parenting my totally average kids, they would be on anti-psychotic medication." Right on sister! As I've said a million times, the hardest part of parenting a child with down syndrome who was adopted from an orphanage is trying to figure out what is causing some of the behaviors we see....DS? orphanage? toddler?  Is it totally normals stuff other 'typical' kids face too or is it above and beyond that? Having not parented any children before Zoya I'm always wondering what is normal and whats not. My instincts tell me theres something more than just typical weird kid behaviors, though it did make me feel so much better to hear some of the stories you left about strange and unexplainable behaviors in your own kids or kids you know.

So to answer some questions.....

Do you use melatonin?
Yes...we have since we arrived home with Zoya and it really does help her to settle down and fall asleep. She sleeps so well the first couple hours, and then starts the tossing and turning. We've noticed she goes through cycles of sleeping well followed by not sleeping well. When she was first home she NEVER slept soundly. Then she'd have a few week period where she'd sleep well, followed by a long period of restlessness. The restless periods have gotten to be less and less the longer she has been home, but we still see the cycle of restless sleep....thankfully the restful sleep periods are lasting longer and longer...we just happen to be in a restless period right now. That makes me think its likely more anxiety related than medical related, but I don't know.

 We had better results with a Magnesium supplement.  It is a natural stool softener and worked wonders.  Ours was in powder form from Kirkman labs (mail order or we would purchase it at our Dr. s office).  Another way to get magnesium into their systems is through a long soak in an Epsom Salt bath.  We also noticed that after we started the oral Magnesium supplement, our son seemed to sleep better through the night.  (Thank you Lord!)  I believe (and I've read) that it has a calming effect on the nervous system.
Thanks for this info...Zoya sees a nutrition specialist and I will ask about the magnesium. She takes calcium nightly which really helps to calm her as well...not sure if it has magnesium in it or not. I will definitely check into this. And cool advice on the epsom salt bath..thanks!

I know it sounds bad, but could she be sleeping too much (during the day)?
I really don't think so because she gets very crabby and tired and will lay on the floor and yawn and rub her eyes if it is past nap time some days. Some days I think she could skip the nap and be fine, but most days I know she really needs it. She falls asleep at night almost as soon as I put her in her bed.

Have you had her checked out physically lately to make sure there's no underlying illness such as blood sugar issues etc?
I don't know that there's ever been a thought to check blood sugar levels unless that is part of routine blood work that she would have had done.

Maybe that's just a coincidence, but when my son's doctor says to be careful to recognize the symptoms of hypothyroidism, she mentions the symptoms you mentioned above. We check the hormones once a year. Have you had this testing done?
Yes she is up to date on her annual thyroid testing...she will be due again in November. Everything was normal last time.

How does her anxiety manifest itself? Crying? Restlessness?
CRYING....LOTS OF CRYING. Funny thing is she pretty much had no idea how to cry when we met her. Then one day she realized her needs are met and she gets attention when she cries and she can cry to communicate with us. Then I wished she never learned to cry...LOL jk. Then she started having uncontrollable crying....like she could NOT get herself under control. She is learning to control her crying a bit better, but sometimes I feel like its a ticking time bomb never knowing when she'll just start crying due to anxiety....like if we go out to eat or something she is fine one minute and then has a look of terror the next. I went through a little bout of anxiety years ago and I remember feeling so out of control of my emotions so I wonder if she feels the same. We are trying to give her lots of tools to calm herself down when she starts getting upset. Like requesting her happy pillow or trying to let her feel in control by giving her choices.  Often she will ask for us to pick her up and then she feels much safer, but lately even THAT hasn't been enough at times.

Does the anxiety go away? Like, at speech does she relax? or is she anxious the entire time?
The anxiety usually lessens usually doesn't completely go away...she is always "on guard" in new situations. Like tonight at speech she was anxious at the beginning, then started to relax quite a bit, then every strange sound she heard (people walking or sneezing) she tensed up and got scared. Sudden sounds have really been bothering her lately and triggering anxiety. My brother sneezed really loud this weekend and it scared her so bad that she wouldn't even go near him until the next day LOL.

Also, I meant to add we are taking a break from therapy for the summer. Maybe a short break might be good for you, too?
Besides speech therapy we don't do any other outside therapies. We have been talking a lot about what we can cut out because we pretty much went from all in home therapies and not much else out of the house to outside speech therapy twice a week, swimming lessons, AND preschool, which could be a cause for the increased anxiety we are seeing. Too much too quick for Zoya. Swimming lessons are over, preschool is just once a week (but will be 3 mornings a week in the fall-we are working on a plan to slowly ease her into it).

From what I understand, it's recommended that every child with Ds have a sleep study by the age of 3. Apnea is just so prevalent. AND What does your doctor say about sleep apnea? Up to 75% of kiddos with down syndrome have sleep apnea (source is Up To Date)and it causes a myriad of problems.... Might be worth checking out- I believe that every child with down syndrome should have a sleep study done due to the likelihood of apnea.
I understand that as well (although no thanks to any doctor we've ever seen even bringing it up)...I found that fact out on my own and asked her primary ped. about it and she said a sleep study would be a nightmare for Zoya (which I totally agree with) and unless she is having issues that would point toward a sleeping disorder that she didnt' see a need. When we go back to the DS clinic in the fall I'm going to ask about it. But usually when doctors ask how she sleeps I say GREAT bc she sleeps so long...I tell them she has on and off cycles of restless sleep but nobody really seems concerned. She only snores if she has a cold...I know apnea can be present without snoring contrary to popular belief....but the usual options to fix it are to have tonsils and adenoids out and/or a c-pap machine....I really don't see Zoya keeping that on throughout the night. 
 I would recommend trying prune juice mixed with apple or orange juice. You can serve it cold or warmed up a touch. A small glass a day surely does wonders- a doctor I followed gave this in the hospital before starting any medications :)
We do diluted apple juice....the only thing about juices is the sugar content...Zoya does NOT do well with sugar so we try to keep the juices to a minimum...even natural fruit juices don't go over well with her. We tried regular prunes but Zoya gagged on those.

Anxiety- is one of the physicians that you are looking at talking to a developmental behavioral pediatrician? I rotated with one of these and he was FANTASTIC!!! May be something to look into if you are interested- in general they give parents strategies to deal with the behaviors to help the child cope.
The place we are hoping to get into in Cleveland has a DBP....this would be helpful (I hope they can give us ideas we haven't already tried).

So first off speech... I am in Ohio, but near Cincinnati so opposite ends here, but we have Help Me Grow and once approved (which DS make it automatic) they send a ST out to your house weekly. Is that not an option there?
I keep getting this question A LOT.  Our state does in home therapies up until age 3...Zoya was getting speech therapy once a week for an hour in our home. When she turned 3 services were turned over to the school district. In her IEP she has speech thearpy listed once a wee for 30 minutes...although most of that is not a pull out session...it is working with her in the classroom and helping classroom teachers know how to help her better with her communication. There is some pull out but definitely not enough for what Zoya needs. We started taking her to outpatient therapy once a week where we live and I still wasn't really seeing much improvement or progress like in all her other areas. That is when we decided to look into apraxia and the PROMPT therapy.  We had a private evaluation done by two PROMPT trained therapists who impressed me a whole lot (posted about it a month ago maybe...too lazy to link it up right now). They concluded Zoya has "severe motor planning disorder which is greatly limiting her ability to verbally communicate"....AKA apraxia. Play therapy does not work for apraxia. This specific PROMPT approach (google PROMPT therapy) is designed for kids with apraxia and after tonight's session I'm even more convinced this is THE ONLY WAY we are going to see improvement with Zoya's speech...this therapy is AH-MAZ-ING...it just stinks we have to drive so far to find a trained therapist. There is simply no substitute for this therapy.  Other mamas who've gone through the PROMPT therapy can chime in here with its awesomeness! Here is a blog (although I never commented) that got me really thinking about Zoya having apraxia and this is where I learned about PROMPT therapy and began researching it.

And just to add...as far as the poop situation....Zoya had awful diarrhea when we first brought her home, we finally did the gluten free diet and it did wonders....then she started having some constipation here and there...nothing horrible until last week when her teacher called me and said she was very worried about her. 3 hours later and she finally worked it out after miralax, 2 cups of apple juice, and a laxative...poor thing...then she gets scared to go the next time bc it hurt so bad...psychological constipation ha! That is why we decided to try the miralax but sheesh I'm thinking we could drop three grains of that stuff in her drink and it'd be enough after what happened these past few days...sheesh!

WOW THAT WAS A LOT! Thanks for all your comments and thoughts and ideas...you guys rock!

Off to prepare for our special visitors tomorrow....wait til you see whose coming!!!!!!!!!!!

Speech and Apraxia

Oh.....speech.....sigh. It's SO hard for Zoya. Currently, Zoya receives outpatient speech therapy at the local hospital once a week for 30 minutes. Before she turned 3, she got speech for an hour every other week at home.  With it being summer, she is only receiving minimal therapy through school.  She can say 10-15 words, although they don't always come out the same way....she has lots more approximations, but overall, her speech skills just aren't really close to her other skills developmentally. About six months ago I started wondering about APRAXIA, which is a motor planning disorder that makes speech pretty difficult. Just recently children with Down Syndrome have been getting diagnosed with apraxia more and more. The old theory was that kids with DS couldn't also have apraxia, but more recent research shows that is not true. Apraxia is also referred to as childhood apraxia of speech, verbal dyspraxia, or oral apraxia.

Here is a definition of apraxia taken from http://www.asha.org/public/speech/disorders/childhoodapraxia.htm:
Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

Zoya is a tough cookie to figure out. She shows some signs/symptoms of apraxia but other things she shouldn't be able to do with apraxia, she can. All cases of apraxia present a little different so it's not exactly easy to figure out in some kids. Zoya's inconsistency in words/sounds is a big concern as well as losing words after she has learned to say them. For an example of inconsistency...the word "baby." Sometimes it comes out sounding exactly like "baby," other times she will just say "ba" or "baba." Vowels are very difficult for Zoya. She will learn one vowel, like long o, and then learn long e and no longer be able to say long o. She can imitate many isolated consonant sounds, but gets all mixed up when trying to produce more than one syllable. She also cannot mimic movement of her tongue like she should be able to. If I say stick your tongue out, she can do that, but she cannot move it up or down or side to side on command. It's just kinda there wiggling around, trying its hardest LOL.

So no therapists, until today, have been able to answer this question: "Is Zoya's speech developing sequentially like it should be, just delayed?" Kids with DS meet milestones, typically they just meet them later than children without developmental delays. This would be true for speech as well, and I hear the magic number for speech to really start taking off for kids with DS is around 4 years old. So, since Zoya is only 3, most therapists have had the "wait and see" approach....just saying, "she'll get it, let's just wait and see..." meanwhile just doing the same play therapy over and over. The play therapy has been great for Zoya's language skills, but has not done a whole lot for speech skills. I don't really like anything about the "wait and see approach" since she already waited the first 22 months of her life with no therapy. I've been pretty frustrated with speech therapy to say the least....up until today.

Today we drove to Buffalo, an hour and 45 minute drive, to meet with a couple therapists who are trained in the PROMPT speech technique. For the first time I felt lots of hope for Zoya's speech progress. These ladies are amazing and so knowledgeable about speech in general, and specifically apraxia. They are highly trained and LOVE what they do. They are in it to HELP kids and want to see progress just as much as I do. It is not JUST a job for them. I could tell that even before I met them, just talking on the phone to them. One of the therapists has a son who was diagnosed with apraxia and the other therapist was her son's therapist so they make a great team. They do all the evaluations together and then we will work with just one of them for therapy. They were shocked to hear that during the school year Zoya will only get speech therapy once a week for 30 minutes....and that is not all one-on-one either. They both work in early intervention through preschool age and said if we lived there Zoya would definitely get speech therapy through the school THREE to FIVE times a week! I said, "Well I guess that's why we are here." And they said, "Well I guess that's why out state is bankrupt and yours isn't." HAHAH.

They pretty positively told me that Zoya's speech is NOT following a typical development pattern that you would see in most children with DS. They saw many signs of a motor planning disorder such as apraxia. They were impressed with her jaw strength and muscle tone so we do have that going for us! There were lots of things she could do that they were very impressed with....so it wasn't all bad news.  Although I could care less about whether or not she is diagnosed with apraxia, I DO care about the techniques that should be used with her based on the fact that she is likely apraxic. Traditional play therapy techniques do not help apraxia. Zoya tolerated the PROMPT technique very well and I have high hopes it will help her learn to speak. They don't solely do the PROMPT technique, they have some other tricks up their sleeves, but their overall approach REALLY impressed me!  She may never speak in full sentences (or she may) but she can definitely learn some functional language to communicate her way through life. When they said there is a motor planning disorder, I had a brief moment of sadness and got a lump in my throat and wanted to cry, but I got over it quickly and was almost relieved to hear someone say what I already knew. Mamas should always trust their instincts. So now that we've got an idea of the problem and a way to help it, I feel a lot better. The only problem is that it will not be fun driving an hour and 45 minutes one way once a week. It is also private therapy and out of state so that means insurance won't cover it. So I told Shawn he needs to sell more drugs (no worries, he is a pharmacist, so he legally sells them!).

I'd love to hear from other DS Mama's about what their kiddos receive as far as speech services.....how many hours/sessions per week and any specific techniques used? What has been helpful for your children in the speech department? Other Apraxia/DS Mamas out there? My next topic of research that I'm just starting to dive into is Augmentative and Assistive Communication Devices to help be her voice in the meantime.