Gifted Issues Discussion homepage Forums Twice Exceptional use of hands - motor delays ... any ideas?

Our just turned 3-year old has always had issues using his hands. The OT says the usual "unaware of where his body is in space" but I just feel like there's more to it? He never has balance problems. Doesn't bump into things, he can jump great (better than my 4 year old), he loves to spin to the music and then stop without losing any control.

BUT he acts like his hands don't even belong to him. At this point he has a GREAT thumb control (thanks to gaming systems) but other than that, we can't get him to do anything else. He will try but everything goes flying across the room because he can't manipulate his hands well enough. I do see a slight improvement from when I first noticed this about a year ago but very little. He won't hold a crayon unless you hold his hand so he can hold it tight, he still doesn't use utensils and only eats with his hands, he loves to do puzzles but can't do them on his own. He tries but can't put the interlocking pieces together so then he either throws it out of frustration or guides my hand to put it where he wants it (at which point I reverse the strategy and guide HIS hand and help him put it together so he can get more practice out of it). He can have a very strong grip but just can't really get much use of it. I know a lot of kids here have fine motor skills delays but I just can't stop thinking there's more to it?

On top of the hands he also has very little use of the muscle in his face. When he talks (finally starting to talk a little!) he hardly moves his mouth and just now when he's three he's starting to make some faces at us thought very limited. He can smile really well when he's happy but other than that, not much facial control. I am getting him an independent evaluation by a local speech pathologist as I am not satisfied with what the local school district SLP came up with. But I wonder if these two things could be connected? Or two separate issues?

It certainly isn't happening for the lack of trying. I'm home with him every day and work on it every day. I'd imagine things would be improving by now it if was just a normal out of sync delay. He'll stand by our white board, I can see him wanting to grab the crayons and write something but then he just walks away from it. It's limiting him in so many ways. He right away dismisses any activity that would require use of his hands.

Oh, and not sure if this might be related or not. He was very early climber but would start using the stairs really late. He just now recently started walking up the stairs himself and going down the stairs is a 5-15 minute ordeal where he sits at the top stair planning his way down (he still kind of side scoots when he's finally ready). So some kind of motor planning problem?

Does this remind you of anything your children have been through? Any advice???

Yes, my DS7 has 'body in space' issues; he had 5 yrs of ot/pt and 2.5 yrs of vt; and more recently water therapy and neurofeedback. He had the oral, feeding, and speech issues and severe SPD too.

The part where your son's hands don't belong to him are 'body in space' as well as the hand-eye coordination, which you're seeing with puzzles. Late jumper is also an indicator. Dismissing any activity that requires both hands is another dead ringer. My DS7 avoided using both hands like the plague, but then he was born with torticollis (neck) and it was like he had a stroke with one side of the body. We've had to really force him to use the left side (which was the torticollis side).

Imo, it's all sounds related. It's probably due to a snag in neurological wiring. In our case, it was tied to severe uterine constraints during the pregnancy and DS7's torticollis. Yes, sensory processing and/or dyspraxia could be an issue too.

What would I do? I would seek out an OT eval asap if you haven't done so already. I would see a behavioral optometrist for a full perceptual eye exam and possible vision therapy asap; no, it's not too early either. I would also look into the Burdenko method for water therapy and/or use some of his techniques like making snow angels in the water.

I'd also work hard on doing anything using both sides of the body evenly and to enhance bilateral integration. This includes crawling through tunnels, swimming, balance beam work, making snow angels on land and water, etc. What you want to do is make sure the arms are crossing the midline and thus both hemispheres of the brain are being used. I'm still trying to do exercises with my DS7.

thank you for the tips! He has been in OT for about 9 months now but it wasn't really targeted towards any of this. It was more about tolerating sharing, etc. He did love any deep pressure that his OT guy did with him and we're continuing with that. He just aged out of Early Intervention this week and will be getting 60 minutes of OT through the school district but I don't know yet what exactly they have in mind for him. He didn't have tortocollis (or older one did and still has some minor issues) ... really, any of his issues didn't start until he was about 12-18 months. Sometimes I wonder if any of this could be somewhat related to very high fevers he had when he was about 12 months old (spiking up to 105F for about 48hrs). Strangely enough, as hard as any fine motor activity has been for him, he has NEVER had any problems turning books page by page ... since he was a baby. He was always so good at it we never realized he might have issues with his hands until it was actually time to really start using them. Crossing his midline is definitely a problem too. He started jumping in one place pretty much as soon as he learned to walk at 15 months but jumping DOWN from steps or places didn't start until the last two weeks. At least things seem to be improving! But it takes a lot of patience waiting for him 10 minutes at the bottom of the stairs until he finds the courage to climb down. Once he tackles that first step at the top, he's fine. It just takes a lot to get him going.

I guess I will see what the school OT will work on and if I don't see much benefit to it, I will look into private OT eval.

Totally agree with CDFox recommendations. I would add, though, that you should take him to a neurologist and get more info and a diagnosis so that you can get accommodations in school. Your son is going to need them, I promise. Also, with a diagnosis you can get, depending on your state, supplemental insurance (regardless of income just based on condition) that helps to pay for therapies and such. It is nice to have. But you need a neurologist Dx not just an OT. How I approach it is, we have the Dx from the neurologist of the condition, the OTs reports and evals show exactly how the condition affects DS in school and in life.

My son is similar but not as severe. He has had none of the speech or face issues, though. He has Benign Congenital Hypotonia and Hypermobility of joints affecting primarily his hands (although he has postural weakness and hypermobilitiy and hypotonia in other areaas well but his hands seem to be the most affected). The condition can cetainly, and often does, affect a child face muscles and mouth muscles but it just did not in my DS (kid is a motor mouth and has been since he was 6 months old). The hand thing is similar, though and has given me pause. For example, my son seems to forget to hold his book... He'll be reading holding his book open with both his hands... this deteriorates into holding with just one hand (not in a proper or effecient way), which then deteriorates to not holding the book anymore - if I am sitting with him I notice I have somehow taken over holding it for him (his hands hanging limply). Or he is some weird position holding the book open with his legs or feet, his hands lying limply at his sides, and he is wondering why he keeps losing his place, etc. I have to keep reminding him, "DS, hold your book with both of your hands!" It's like using both of his hands is simply not automatic. He has other similar symptoms as your son but I would say his just haven't been to the same degree.

My son gets OT and VT... We are starting a new 'progressive' out-of-the-box OT next month who is big into the "integration of the hemispheres" I am excited to start but it's expensive. He also gets OT through the school but I would say it is not nearly enough or as good as private. My DS rides a bike, which I think is good for it. He also inline skates and has started ice skating. CDfox, are these also good bilateral exercise do you think? He has started keyboarding for playing minecraft and I got him a special keyboard and make him use both hands - the left hand for the left side and the right for letters on the right. We noticed today he is getting quite good (but he wouldn't touch a keyboard before the VT).

HTH!

My guess would be that it's all potentially related, and I'll second all of cdfox's advice.

I'll also add that it's quite possible to have fine motor challenges in some areas and not in others - our ds who has dyspraxia (developmental coordination disorder) was creating amazing drawings and could make incredibly detailed clay figures when he was 3-4 years old, but couldn't button his shirts or tie his shoes, and later on struggled tremendously to learn how to write. I also wonder from the notes re jumping *down* and going down stairs if there isn't a vision component mixed in for your ds. Crossing the midline is an issue for my ds with dyspraxia but also for my dds who both have vision challenges.

What does your ped think about the quality of OT evals and services through the school district vs private? I'm just curious - if you lived in our area, I'd recommend getting another eval privately.

polarbear

or pedi is useless. It's just a family practice where you need to walk in with your own diagnosis if you need results. He passed the basic vision test through the school district where they just take a picture of the child's eyes and check for problems that way but not sure if he might have problems with depth perception perhaps?

Marytheres, I've been following your posts and keep seeing similarities in your son and my son a lot. He too seems to drop things after awhile, on his feet a lot of times! ... poor thing . And I have seen him so many times use his feet to do something rather than his hands!

I spent the last 9 months telling the Early Intervention therapists that his hands and whatever issue they are connected to is the main problem. Same with the Autism evaluation team. After 30 minute eval, they concluded that he has High Functioning Autism but wouldn't really hear me when I tried to explain that he doesn't have lack of fine motor skills as part of Autism diagnosis but he has signs of Autism because he's so frustrated with his own body! Of course he'll get mad and throw things when his hands don't do what his brain wants them to! Same thing with the school special ed eval. They looked at his Autism diagnosis and that was it for them. He needs this and this because he's autistic.
Everyone seems to be treating the symptoms rather than what causes them. He's not hooked on touchscreen toys and electronics because he's Autistic ... he uses them because he CAN and they don't limit what he can do! He loves tracing letters on the touchpads again ... because he CAN.

He is really interested in starting to use the computer (Starfall, ABCMouse.com, etc.) ... he can navigate the keyboard but can't use the mouse. Can't hold it right and can't seem to connect the mouse and the pointer ... again, unaware of what his hand is doing.

For a Neuro check up, what department exactly would we need to go to? Neurologist? Neuropsychiatrist? Or anything else? We are probably looking at 4-6 months waiting time with any of these so I should get working on this asap.

We are doing private Speech eval on Wednesday and I told the lady that what I really want is for her to check on how his mouth and the muscle actually functions. So she knows what our concerns are. Depending on what the results will be, I can get an OT eval through one of the therapists in the same place. Fortunately we get sibling priority placement with them since DS4.5 gets OT there as well.

MK13 - I TOTALLY know how you feel and once "they" start looking at everything through a certain lens (label) it's very hard. I totally sympathize. Autism and ADHD Dxs are BIG in our area and it is what everyone seems to want to leap to for some reason. The upside of your situation is that at least your getting you son help earlier .... I was almost two years behind you! I would have loved to get on the OT and VT earlier... Please follow you gut instinct!

Anyway, I went to a neurologist with my son to get him looked at for the hyptonia and hypermobility...The diagnosis has proven invaluable. If you are near the Philly area, I could give you some names/recommendations. I am taking DS in May to see a neuropsychologist. I have high hopes for her.

I wanted more testing on DS (like an MRI, etc) but both neurologist and the neuromuscular sepecialist just don't think it's worth it b/c he's so high functioning and an MRI would require sedation. The sedation does make me nervous so I didn't push - it would be a lot to put a kid through, I think. I am taking DS to see a connective tissue specialist in a few months (at the recommendation of the neuromuscular specialist) - I'll see what he or she is willing to do test-wise and see what her/his take on DS is.

These issues (at least my DS's) are neurological so I am realizing our DSs needs "neuro" people ... General psychs and educational (IU) people, have been pretty darn useless and in some cases, harmful for us. I think you need a neurologist (and he/she can recommend further specialists if necessary) and perhaps a neuropsych (at least eventually). Others further along in this path or who have different experiences/perspectives, will hopefully chime in. But that's what I think.

I hope that helps. Please keep us updated, I'll be following !

Oh and I got the recommendation for the pediatric neurologist from our ped. I live near Dupont Hospital and Childrens Hospital of Phila so we have a lot of options in this area. My ped is decent and I think the neurologist he recommended is decent.

We are on the IL / WI border so I can either go through Children's hospital in Chicago (which would be a longer wait) or Children's in Milwaukee (about half the wait time). There are some departments in Milwaukee that do not take our insurance but I think Neurology does take it.

Thank you again for the tips. I do believe in following my gut and it's telling me that this is the direction we need to take for now!

I guess I now have two posts related to the same issues as the older one took off on it's own yesterday ...http://giftedissues.davidsongifted.org/BB/ubbthreads.php/topics/149071/Anyone_with_child_that_has_Apr.html#Post149071 ... but for those who haven't seen my update over there today, we had the private speech evaluation this morning and there IS definitely issue with DS3's mouth. The therapist said either a tactile issue in the back part of his mouth and / or tongue movement issue (at the least) as he clearly cannot move food correctly in his mouth) ... and it's possibly why he doesn't want to use utensils and doesn't want us feeding him with utensils because then he loses the control over where he puts the food in his mouth with his fingers. She watched him eating a banana today and saw how he was shuffling it around with his finger.

As for actual speech, he makes sounds correctly when it's just letter sounds but when it comes to speaking words and sentences he again makes tries to create all the sounds in the front of his mouth just like when he's eating food. So seems like speaking is actually uncomfortable for him and he's only getting the hang of it as he's slowly starting to master the movements of his tongue better. She did say that if in fact the tongue and facial movement is what's causing it (we ran out of time and she wants to work with him more to really get to the bottom of this) it could also be related to the other motor issues he has.

so, all in all pretty good news as we finally have something to go by!

And now I have to brag a little about my boy. It's not a high IQ sort of achievement but more so a brag about him figuring out how to compensate for one of his issues. He's been really wanting to play with DS4.5's Leapfrog Clickstart game system (has a keyboard and mouse that you have to use) but because of the limited use of his hands, he's never been able to use the mouse to move it around and I THOUGHT he doesn't get the connection between the mouse and the cursor on the screen ... well today I watched him and when he got to the place where he needed to use the mouse he took it off the pad, turned it upside down and used his THUMB on the mouse sensor to manipulate the cursor and then clicked on what he needed! THAT'S MY BOY! lol So, he clearly did get how the mouse and cursor are connected, just wasn't able to use the actual mouse and compensated for it quite well!