Dyspraxia- anyone familiar with it?

[Suz D]

I am suspecting that our daughter (nearly 7) may have dyspraxia. Does anyone have experience with this? I have a few questions (preferably for someone who has a child with dyspraxia who is our daughter's age or older) or someone who is an occupational therapist, neurologist, or some other knowledgable person. I want to see if I'm on the right track so that I know what type of therapist she needs to see. Then we'll go forward with a little more information.

 

[Mickey'snewestfan]

I'm a veteran special educator, with lots of experience with kids with dyspraxia. I also suspect that I have a mild version myself.

If that's close enough to what you're looking for, I'm happy to answer questions, either here or by pm.

 

[DJinPA]

My son has been diagnosed with mild dyspraxia. We have found Occupational Therapy to be the most beneficial, although he also gets Speech Therapy. He has been in physical therapy through the school, which helped "pre-teach" skills for gym class, playground. He has been in taekwondo for years, with a very supportive teacher and although he does not perfect every movement, he really does well. Unfortunately, we are at the level where tournaments, etc. are required to advance and he does not do well in that arena (although he doesn't need to win and can just participate, it can be discouraging). The taekwondo seemed to work better than the phsyical therapy - he has had some other medical issues, and he is very conscious of being different and not good at sports. My suggestion is that it is worth it to see a pediatric neurologist. Dyspraxia often co-exists with other issues (adhd, dyslexia, etc.) and it is so, so, so, important and life-changing to get early intervention. A neurologist can diagnose the dyspraxia (which in our state is the key to obtain services), write a script for PT and OT (which help with school and insurance) and point you in the right direction if another diagnosis is needed that they can't provide. OT has been amazing for us - we had a therapist that really instilled confidence in my son and reinforced that learning something a different way (like tying a shoe) does not make it wrong (the shoe is still tied!). Happy to discuss with you. I can give you my email if that helps. My son is 9.

 

[Suz D]

I'm a veteran special educator, with lots of experience with kids with dyspraxia. I also suspect that I have a mild version myself.

If that's close enough to what you're looking for, I'm happy to answer questions, either here or by pm.

Perfect! Anyone else who is willing to contribute to the discussion would be welcome. I'm okay with Q&A on the boards. You never know when it will help someone else.

Here's some background information. Our daughter will be 7 in June. She is adopted from foster care (we were her 3rd set of foster parents). Both biological parents have challenges (neither can really read or write, mother can't work). They were not married, in their 30's when she was born. We have no idea about pre-natal care, alcohol/drug use. "Bee" was removed from mother's care at the hospital (she was the 4th child to be removed from the home) and placed into foster care. At 3 months old she was diagnosed with failure to thrive and was placed in her grandmother's care. For the next 8 months she went from grandma to us as we went through the licensing process for foster care. Then she came to live with us permanently at 1 year. We adopted her shortly after she turned 2.

She was very slow to sit, crawl, walk. Didn't sit unsupported until 10-12months, didn't walk until 17 months. Speech was also an issue. Couldn't make more than just a "d" sound for the longest time. We had her evaluated by the state and she was put into the first steps program for speech therapy at 18 months. Shortly after that, they also put her in PT. The PT mentioned a possibility of dyspraxia in passing but that was never explored due to a move/job change, the death of my mother, my father's rapidly progressing Alzheimers, and the stress of a contested parental termination process etc. We moved and worked with her at home. She qualified for the developmental preschool at 40 months. Her two specific delays that qualified her were failure to be able to walk backwards and not potty trained. She was not potty trained until 42 months.

She did very well in the program and was phased out of an IEP because she was doing so well.

We've been having some behavioral issues with her (failure to follow directions, forgetting what she's been asked to do, extreme mood swings, disregard for rules, no impulse control, no fear of anything, incredibly stubborn and defiant). I've been at my wits end to figure out how to help her as everything we instinctually do as parents does not make any difference. We're consistent, lay out the consequences clearly, have clear rules for our home, spend a huge amount of time together as a family etc. I spent time on my knees praying how to help her and the dyspraxia comment popped into my mind. In researching it, here are a few of the things that lead me to believe that she might have it. In no particular order

extreme sensitivity to sound (silver ware clanking together "hurts" her ears)

sensitivity to food texture (gags at the texture of certain things)

low sensitivity to pain (when she was tiny I clipped her nail too short and got a chunk of her finger. It bled like nobody's business and she didn't make a peep)

Short term memory issues (long term is unbelievably accurate)

Problems with sequencing

Very delayed in being able to do stairs left/right/left/right.

Can't grasp the concept of pedaling a bike

Incredibly clumsy (she's just full of bruises, falls constantly, bangs her lip on the seat in front of her every time we're in a theatre...I think it's a depth perception issue on that)

Failed her hearing screening 2 years in a row yet when I whisper something in another room, she hears me just fine. I think she didn't grasp that when she heard the sound she was supposed to indicate that.

The PT also mentioned low muscle tone when she was under 2 years old (she can put her feet behind her head STILL at nearly age 7, sits with her feet wide apart and can put her head on the floor, slow to sit on her own without flopping over)

Impulsivity

Short attention span

low frustration tolerance

Terribly handwriting (the worst in the class, can't hold pencil properly, can't grasp the concept of leaving spaces between words)

There are many things that are listed under possible symptoms that she doesn't have, but these are the ones that are just off the top of my head.

My question is this...she runs on the playgrounds, climbs on things, is incredibly bright and doesn't struggle with most areas of school. Reads beautifully, spells very well, speech is now very good if not advance in the vocab area, she's a great little problem solver. With all of those positives, I want to make sure that I'm not making a huge stretch with bringing up dyspraxia since she's doing so well in all of those areas. I feel like it's crazy to even go there given that, but something is clearly creating difficulties for her. We have limited services in our town so if I could get a bit of a start on at least a direction I should go, that would help facilitate finding someone to help us out. We may end up having to go to another town for services.

Whew! Let me know your thoughts okay? Thanks!

 

[Suz D]

My son has been diagnosed with mild dyspraxia. We have found Occupational Therapy to be the most beneficial, although he also gets Speech Therapy. He has been in physical therapy through the school, which helped "pre-teach" skills for gym class, playground. He has been in taekwondo for years, with a very supportive teacher and although he does not perfect every movement, he really does well. Unfortunately, we are at the level where tournaments, etc. are required to advance and he does not do well in that arena (although he doesn't need to win and can just participate, it can be discouraging). The taekwondo seemed to work better than the phsyical therapy - he has had some other medical issues, and he is very conscious of being different and not good at sports. My suggestion is that it is worth it to see a pediatric neurologist. Dyspraxia often co-exists with other issues (adhd, dyslexia, etc.) and it is so, so, so, important and life-changing to get early intervention. A neurologist can diagnose the dyspraxia (which in our state is the key to obtain services), write a script for PT and OT (which help with school and insurance) and point you in the right direction if another diagnosis is needed that they can't provide. OT has been amazing for us - we had a therapist that really instilled confidence in my son and reinforced that learning something a different way (like tying a shoe) does not make it wrong (the shoe is still tied!). Happy to discuss with you. I can give you my email if that helps. My son is 9.

I must go get my daughter at school in a few minutes but wanted to thank you for this very helpful post! Pediatric neurologist hadn't even entered my thoughts and that might be a good place to start (after our primary pediatrician of course). I will definately be in touch with you. I want to respect your privacy so if you're more comfortable doing that via e-mail, just send me a PM with your e-mail address. Thank you so much!

 

[Mickey'snewestfan]

She sounds like a wonderful little girl, with lots of strengths.

When you are thinking about kids with sensory and motor skill problems, there can be a lot of overlap between different issues. You definitely have a lot of things on your list, such as the over and under-reactivity to different stimuli, the difficulty skills like stairs and pedaling that require both balance and bilateral integration, the low muscle tone, and the difficulty with handwriting, that warrant a visit to an occupational therapist. An OT can evaluate her skills, and her sensory profile, and the way she approaches tasks, and give you a sense of where exactly the disconnect is happening. It could be mild dyspraxia, or it could be something related, or it could be a cluster of things. A good OT would be able to help you sort that out.

The other thing that jumps out at me was the combination of short attention span, impulsivity, poor short term memory, low frustration, and mood swings. Those could be side effects of sensory and motor problems. Sometimes kids will appear impulsive, when the issue is more that they don't have a lot of solutions to motoric or social problems, so they appear to jump quickly. Kids with sensory issues also experience a lot of stress dealing with the world in general, and sometimes they just don't have a lot of energy left over for emotional regulation. If that's the issue, and OT might be able to help. On the other hand, sometimes attention span, impulsivity, etc . . . can be a separate underlying issue of their own. One that's most commonly treated by a psychologist, psychiatrist, or developmental pediatrician.

My advice would be to start with an OT, and then to think about adding a developmental pediatrician. I'd start with an OT because I think it's clear she has some issues in that area, and because in my experience they'll get to practical solutions fast. I'd also add the developmental pediatrician because I think they do the best job of sorting out kids who have multiple subtle issues. They should also be able to give you some strategies for school and home, and help you decide if other specialists should be added with the team. I wouldn't start with a neurologist. In my experience, most kids with the kind of subtle issues you describe, don't show anything on neurological imaging or other tests. If I'm wrong, a developmental pediatrician can send you to a neurologist, but I think it's likely that they won't. On the other hand if you start with a neurologist, they'll likely send you to a psychologist or developmental pediatrician, which will just result in a higher cost for you.

Good luck!

 

[Fan of Figment]

I just wanted to thank you for your post. My son is 8 and was evaluated at school last year. He now has an IEP and that is helping tremendously. They don't give an official diagnosis through the school, just give him a plan that best helps him with his needs. He has OT, speech and also special reading and math.

I always leaned towards dyslexia, but sometimes it seems more involved than that. I had never heard of dyspraxia, but it does sound a lot more like what he may be dealing with. We had an appointment with a pediatric neurologist but wound up cancelling it because he had such a great review at school. I had been on the fence about going that route and the good report from school helped sway my decision.

It's frustrating because sometimes it seems like there's nothing wrong, and some days his behavior/symptoms are over the top. Like I said, I just wanted to thank you because now I have a new idea of what may be going on and can look into further. Best of luck to you and your daughter!

 

[Suz D]

The other thing that jumps out at me was the combination of short attention span, impulsivity, poor short term memory, low frustration, and mood swings. Those could be side effects of sensory and motor problems. Sometimes kids will appear impulsive, when the issue is more that they don't have a lot of solutions to motoric or social problems, so they appear to jump quickly. Kids with sensory issues also experience a lot of stress dealing with the world in general, and sometimes they just don't have a lot of energy left over for emotional regulation. If that's the issue, and OT might be able to help. On the other hand, sometimes attention span, impulsivity, etc . . . can be a separate underlying issue of their own. One that's most commonly treated by a psychologist, psychiatrist, or developmental pediatrician.

My advice would be to start with an OT, and then to think about adding a developmental pediatrician. I'd start with an OT because I think it's clear she has some issues in that area, and because in my experience they'll get to practical solutions fast. I'd also add the developmental pediatrician because I think they do the best job of sorting out kids who have multiple subtle issues. They should also be able to give you some strategies for school and home, and help you decide if other specialists should be added with the team. I wouldn't start with a neurologist. In my experience, most kids with the kind of subtle issues you describe, don't show anything on neurological imaging or other tests. If I'm wrong, a developmental pediatrician can send you to a neurologist, but I think it's likely that they won't. On the other hand if you start with a neurologist, they'll likely send you to a psychologist or developmental pediatrician, which will just result in a higher cost for you.

Good luck!

Thank you for your quick reply! The part of your comment that I bolded is EXACTLY my thinking. That her behavior issues are possibly side effects of her sensory issues. These behaviors aren't new, we just thought she would grow out of them by now. Clearly that isn't happening which leads me to believe that there's something else going on. ADHD has always been in the back of my mind and most of what I've read about dyspraxia (and it hasn't been a lot) indicated that often ADHD and dyspraxia are partners in crime (as you and DJinPA mentioned. That would make sense with what we're seeing from her.

I also appreciate the advice to see an OT first. I don't know if we have a developmental pediatrician in our town but I will find out. She's right on track developmentally now though which is why I wondered if it's a stretch with dyspraxia. She still has sensory issues (gagging, excessive saliva, terribly messy eater, can't pedal the bike-which I think IS developmentally delayed at her age, clumsy) but intellectually she's on track.

Thank you for your nice comments about her as well. If this does end up being diagnosed I'm going to feel terrible because she's really gotten the short end of the stick when it comes to parenting. No amount of strict parenting will work with that. Taking away privilages for breaking rules or doing something wrong is NOT going to correct it. It's going to take a whole different approach and a lot of learning on our part. She's worth it and deserves it!!

I just wanted to thank you for your post. My son is 8 and was evaluated at school last year. He now has an IEP and that is helping tremendously. They don't give an official diagnosis through the school, just give him a plan that best helps him with his needs. He has OT, speech and also special reading and math.

I always leaned towards dyslexia, but sometimes it seems more involved than that. I had never heard of dyspraxia, but it does sound a lot more like what he may be dealing with. We had an appointment with a pediatric neurologist but wound up cancelling it because he had such a great review at school. I had been on the fence about going that route and the good report from school helped sway my decision.

It's frustrating because sometimes it seems like there's nothing wrong, and some days his behavior/symptoms are over the top. Like I said, I just wanted to thank you because now I have a new idea of what may be going on and can look into further. Best of luck to you and your daughter!

I'm so glad that this was helpful to you. The parts of your comments that I bolded are exactly why I posted here. You just said it much better (and shorter) than I did.

 

[Suz D]

DJinPA I didn't see before, but we're neighbors. Thanks again for posting.

 

[Mickey'snewestfan]

Thank you for your nice comments about her as well. If this does end up being diagnosed I'm going to feel terrible because she's really gotten the short end of the stick when it comes to parenting. No amount of strict parenting will work with that. Taking away privilages for breaking rules or doing something wrong is NOT going to correct it. It's going to take a whole different approach and a lot of learning on our part. She's worth it and deserves it!!

Maybe I'm reading that in a different way then you intended, but I would say that this is totally untrue. Your daughter may be unlukcy in some ways, that she has these struggles, or the losses in her early life, but it sounds like she has landed in the right place. With a family who loves her, appreciates her quirks and all, and will seek out what she needs to grow up strong, confident and capable.

 

[DJinPA]

I am so glad you are getting some direction. OT and Behavioral/developmental Pediatrician are great options. We were very lucky with our pediatric neurologist, who has been a great resource. Full disclosure, as a younger child he had other health issues, so we needed to make sure some of the issues were not caused by something else progressive (thankfully not!). I feel strongly that you need to have a point person to help you. Our OT was incredible, but would not have diagnosed behavioral/sensory issues, but would have helped us deal with them if we raised the concern. I have found diagnosis yo be key, not to label but to get the right resources. I also think a point person, in my opinion preferably a doctor you trust, is a great resource if you need to go to other professionals (OT, psychologist, PT, etc.) to help you interpret the info together, not in individual parts. Unfortunately, we dealt with a psychological diagnosis which was not accurate and without support, I would have had difficulty challenging it and interpreting the results in a useful way.

I am so happy to talk about my son. He is doing great and, although we struggle, I think we are on the right track. Your daughter sounds similar to my son in that they are both intelligent and verbal (boy, is he ever!). I know it has been stated, but the most difficult has been emphasizing his strengths and working the 'weaknesses' to what he needs, not what we are tuned to think is normal. Sometimes that is more difficult for us as parents than it is for them. I will try to send you a personal message with my email. As you can see from my post count, I am new at this...

Your daughter is blessed that you are on top of this and ready to find the resources she needs. I think you will be amazed how she will thrive!

 

[Suz D]

Maybe I'm reading that in a different way then you intended, but I would say that this is totally untrue. Your daughter may be unlukcy in some ways, that she has these struggles, or the losses in her early life, but it sounds like she has landed in the right place. With a family who loves her, appreciates her quirks and all, and will seek out what she needs to grow up strong, confident and capable.

I really appreciate the nice post. Thank you. My short end of the stick comment was my guilt over assuming her behavior was something that could be corrected with our strict parenting style of tough consequences. If it's really a neurological condition, she needs a very different approach, and the last few years have probably been very hard on her. I can hear her little mind saying "I'm TRYING to do what you want me to do Mommy, but I just can't get it right".