Gifted Issues Discussion homepage Forums Twice Exceptional Dyspraxia/DCD. Forget the kid, I'm depressed.

So I picked my 7 year old and a friend up from cooking camp this week. The friend announced (very politely) that my daughter had done something to gross everyone out and had to be asked to stop three times. After a little prompting, I figured out that my daughter had eaten cous cous with her hands. She eats everything with her hands. I have never been able to get her to eat with a fork.

The next day I went in to talk to the instructor, to explain dyspraxia, thinking I would suggest they just help her put the fork in her hands the right way...and while waiting, I saw that they were selling this set of gardening tool eating utensils that were really easy to grip. I bought them for her. While buying them, I told the sales clerk that she had DCD, and the sales clerk said her niece had that, had a teacher who understood it, and used a compass or something to teach her how to write. I'm not sure I understand how that works, but she said that her niece was doing great because of this teacher. I'm jealous! Why can I not get my daughter access to one of these teachers?

Back to the eating utensils. My daughter has asked for and used them every day. She now can eat with a fork. A pink fork meant for a two year old, but a fork nonetheless. She is obviously happier, even if she didn't seem particularly upset before.

How do I find the magic tools? Why did it take me so many years to find this stupid fork and what else is out there for her?

It has been almost 4 years now. 4 years of paying all kinds of doctors who can't really do anything. Her swimming teacher quit on her. I can't teach her how to swim. Her 1st grade teacher who I swear is one of the best in the school still really believed that my daughter's problems were of her own making.

They don't have to teach her math, they don't have to teach her reading, they don't have to teach her pretty much anything academic, but can't someone please teach her how to put her books in her desk??

I just don't know what to do to help her. So fork, okay that's good...for now. I have no idea how she's ever going to learn to hold a fork for real. Writing? Sometimes her writing is crazy neat, sometimes it is unreadable. I tried to teach her typing this summer. She's not interested.

No OT anymore. She graduated. Our health insurance doesn't pay for any of this. We have an educational psychologist for counseling right now at $175 an hour.

I just don't know where to go or what to do or what to ask. I just want her to be okay. My husband had the same problems. He is not now nor will he ever be truly okay. I don't want the same thing to happen to her. Where do I find one of these teachers who understands and who will teach her how to write with the magic compass?

Are there books that any of you can recommend for teaching me how to teach my child? She had physical therapy from 4mos-3years, a complete neuropsych evaluation at 4, OT for a year at 6. No one is really putting all of the pieces together and this has been a very exhausting, expensive journey with an otherwise sweet, happy, intelligent, total pleasure to be around kid.

This is part rant and part "really, really, what on earth do I do?" and partly wondering if anyone knows what the heck this compass thing is all about because I'd like to find one of those.

Hugs.

Maybe she is setting the compass so one leg rests on top of the hand and kind of braces/anchors the leg the pencil is on?

Awww! I feel for you! I wish I had solutions for everything you listed, but I only have a few ideas for food. Even if what I suggest is completely redundant to what you already do, I hope the bento forks at least give you a smile.

A way to build some of the strength and dexterity of using a fork could involve eating bites from pre-loaded bento forks. These are just one (adorable!) example:
http://www.allthingsforsale.com/ben...ute-animal-fork-8-pcs-4904705159437.html

You probably already do this, but formed foods (fruit cubes, sliced meat) can be eaten kebab-style off pre-loaded bamboo skewers, which gives her an opportunity to practice handling an implement without requiring undue hand strength.

If you want to have her help prepare cutting the foods you're pre-loading, she can use a mezzaluna with two hands. The motion is forgiving and can rely heavily on force from the back and shoulders. Maybe pre-cut tranches of soft foods, like melons and cooked meat, as a point of departure.

Sending many hugs and lots of sympathy your way.

Nothing to add or suggest re: DCD but understand the depression part. So very difficult when the problems are pervasive. So very difficult to hear negative remarks about your child, delivered politely or otherwise. Sending lots of cyber-support.

Hugs. I feel for you too.

I did a quick search for dyspraxia and writing and found these links from the UK that may help. The first link has suggestions for alleviating the issues with handwriting and the second one has links to tools you can buy, they are in the UK but perhaps you can find similar here.

I think most people here in the US have not heard of DCD (which is what the condition is called here in the US), which may explain why your DD's teacher thinks her problems are of her own making. In the UK I think more people are aware of dyspraxia (which is what it is called there).

http://www.dyspraxiafoundation.org.uk/wp-content/uploads/2013/10/handwriting_and_dyspraxia.pdf

http://www.thedyslexiashop.co.uk/st...ting-aids.html?learning_difficulties=144

I hear your frustration. DS is 8 and the other day I muttered to someone that when he is 40 I will still be wiping pizza sauce off his chin and cheeks. I know he eats pizza at school sometimes, and other messy foods, so I am not sure how the teachers are handling it there because he never comes home looking like he needs a bath. He does use utensils, but holds them very shovel-like. I remember I did too, until maybe 6th grade, when kids started making fun of me.

He has an IEP in the "physically impaired" category (I had to fight for this), so he is pulled out for OT, writing, DAPE (PT), and speech. So that helps to reduce a lot of the out of pocket expenses. One thing that we have in his IEP is that he is supposed to use golf pencils to write because he does so much better with those than regular, long pencils. Unfortunately, I don't think he uses them regularly. I'm curious about what the compass thing is as well.

I'm sending a huge cyber hug your way - raising a child with a challenge such as Dyspraxia can be stressful and frustrating at times.

My random thoughts/suggestions:

First and foremost, listen to advice from strangers (and non-strangers), take what is offered up as coming from a caring place, if something makes sense and clicks, try it out, otherwise just toss it. Don't dwell on it. The hallmark of dyspraxia is that it impacts is a disorder that can impact many different functions and therefore impacts each individual differently. Having never met the person that the salesperson was talking about, you have absolutely no idea to what degree and how the child is impacted by dyspraxia.

Not sure if it's the same thing, but my children were taught how to grip a pencil using a compass concept. I can't remember the exact instructions, but they laid the pencil on the table facing north and then picked it up and flipped it around somewhere and that landed the pencil in the correct tripod grip position. It worked great for my n on-dyspraxic dd who had vision issues, but my dyspraxic ds only developed a correct pencil grip through 8 months of handwriting OT.

There was a specific type of grip as well as a thick triangular shaped pencil that my ds preferred when he was younger. Now that he's a teen he prefers mechanical pencils - when writing. *However* (and this is a huge however), our ds is dysgraphic, and our ds' neuropsych felt he would never be able to depend on handwriting, and recommended he move to keyboarding and scribing right away (at 8). We've structured his keyboarding etc in a way that he moved away from scribing as quickly as possible (to promote independence) - but the key for our ds was to take away the demands of handwriting. We made sure he has the functional ability to sign his name and write a brief note, and he uses handwriting at school for short-answer questions (as in phrases, or one or two word fill-in-the-blanks), but that's it.

Re the issue with using a fork etc - is it possible for you to request a one-session or 2-3 session appointment with an OT to address very fundamental issues such as this? I think it's easy to get suggestions online, but not so easy to get meaningful suggestions without having an OT or PT actually see a child in person to get an understanding of what they are and aren't capable of in terms of motor function.


My personal speculation (and it's nothing more than that) is that dyspraxia, along with dyslexia and dysgraphia, has a genetic connection. My dh's family includes adults and children with all three diagnoses. I do wonder though, what is meant by "he is not now nor will he ever be truly okay." Dyspraxia is for life, that's for certain. It won't go away. My ds is struggling with it as a teen, yet he's not struggling. It's a part of who he is, and when he shares how he feels about who he is, he is adamant that he wouldn't go back and take away having dyspraxia/dysgraphia even if he was able to magically do so, because living with it has made him the unique individual that he is, and he is proud of who he is. Can he keep his room clean and organized? Nope, not yet. Can he use handwriting? No. There are a lot of things he "can't" do but he is working on the things that are important and has tossed aside the things that aren't. The important thing is there are so many things he *can* do. He is, absolutely, *OK*.

The journey is long, can be exhausting at times, and yes, it's expensive. Please know that we're here to listen to you when you need to complain about all of that!

Sending you a ton of support,

polarbear

ps - I have some book suggestions, will return with them in a moment.

I feel for you. My 2e/pg ds9 has dyspraxia plus tons of other issues. He had ot and ot from 0-5, and 1-5 for speech, and then didn't qualify any more for them. He still uses the pink fork and spoons for toddler/preschoolers that I bought at Target years ago for $1/each. He has difficulty with using adult utensils. He avoids writing like the plague. Basically, he avoids a lot of things that involve his hands and grasping things, though he does bike now (which I'm thrilled about).

We homeschool so I can attempt to deal with the special needs issues and been dealing with them since birth. I asked tons and tons of questions of ot/pt when ds was in therapy and I did a lot of carryover exercises between 0-5. I'm sure you can find exercises on pinterest or elsewhere online. It's been a long, long journey. Ds got the dyspraxia diagnosis at age 3.5 yrs old when we were living in NYC and saw a top developmental pediatrician.

Polarbear - I would totally agree with you. There is a genetic component. Ds also has hypotonia (low muscle tone). That's hereditary too. I believe it's tied to the peripheral nervous system in utero. That's my sense and based on what I've been reading lately and thinking about it.

Hugs. I understand the frustration. My DD10 also has a number of issues (sensory and anxiety-related) that we have been to different people about, and I so long for _someone_ to put all the pieces together so we can make progress.

DS7 likely has DCD as well as convergence insufficiency. He also also has trouble with cutlery. We did find some nice plastic ones at IKEA that he seems OK with - although still prefers to use his hands.

Re: swimming - been there too! Middle of the last session (with a private swim instructor) she told me she needed to start over and teach him to float. So discouraging! But the current session he's in (group session this time), for some reason he just decided that he was going to learn to put his head underwater - and he did! Spent the whole 1/2 hour dunking himself. I was amazed - it was clearly hard for him - the look on his face every time he did it - he clearly didn't like it (he has some sensory issues). But now he sort of can, and is making progress with the front floats! So - don't lose hope. Sometimes they finally do make progress when you least expect it.

Sorry I have no idea about the compass. DS finally has a good pencil grip after several years of teachers helping him with it. The OT we talked to suggested 'short' pencils, so I also bought a package of golf pencils for home use. They seem to help. I also bought pencil grips to put on them, but he doesn't like them.

I hear you about the expense - OT and vision therapies are not covered by my insurance. Also have paid for years of private swim instruction - it was the only way.