Last fall, we had a developmental assessment done with Dr Escolar and her team at the Center for Learning and Development at UNC.  Grace has a myelin disorder, particularly hypomyelination, meaning that she has not made an appropriate amount of myelin in her brain.  She has the average amount for a 2 1/2 yr old.  After three MRIs in 2 years revealed no change in her myelination,  we were concerned that  there might be some developmental delays or other imacts from that.  We contacted Dr. Escolar, who is involved with The Myelin Project and she invited us to come for an assessment in November.  It was about 5 hours of intense testing... with a developmental pediatrician, a speech  pathologist, an audiologist,  a child psychologist, and a physical therapist.

My report from last fall:

Grace is average or above average in almost all areas of congitive related abilities.  This is great news!

Grace is significantly delayed in gross motor skills and somewhat delayed in fine motor skills.  This was a bit of a surprise, but the area we most expected to see something related to her hypomyelination disorder.  I guess I figured if she had gross motor delays, she'd have crawled, cruised, walked late (and she was a little late, but 14 months is still quite average).  But its gross motor in other areas, nothing that hampers her normal play at all, though. 

They are all delayed to about a 36-48 month level.   She just turned 6, so most of the items on her test show Grace at one or two standard deviations below the norm. Things like balancing, throwing and catching a ball, etc.  The thought processes and gross/fine motor issues in particular that seem affected are motor planning and sequence of tasks related. 

I first wondered about this motor planning thing when I realized that Lily could recognize that her shoes were on the wrong feet and switch them sometime around 18 months, and Grace, 4 1/2 at the time, couldnt really make that connection.  Id have to tell her to take them off and then I would have to switch the placement of the shoes  in front of her.  And here at 6, she cannot put her own socks on correctly, she has to have them lined up on her toes just right.   Just some examples of the sorts of issues Ive noticed over the years and just wondered about.

The fine motor skills issues involve things like the way she holds a pencil (not just wrong or childishly, but in a compensatory sort of way..  I forget if its that she keeps her wrist immobile and just uses her fingers to write, or the other way around, but whichever it is, is not the usual way.  Dr. Escoloar noted this same comensating tendancy in my husband as he held a pen.  She may have issues with taking down dictation, she may have issues with learning to write in cursive, things like that. And if she cant see her hands while she is doing an activity, it really throws her.  Like looking straight ahead at the person testing her, but mimicking their finger motions is something she can't really do.   This is a sensory issue, involving body awareness and where your body is in space. 

She also has a lack of muscle tone in her torso.  For instance, when she rides her bike with training wheels, she can keep her upper body straight, but her hips and lower back are all sliding around and she cant keep them still and tight for balancing.  It will probably take her longer than most kids to learn to ride without training wheels.  She also does toe walking, which I actually never noticed.  This is also a red flag for sensory issues, because the bottoms of the feet are so tender, and toe walking prevents all that stimulus from happening.  I guess when I have seen kids with autism spectrum disorders or CP, it is very exaggerated toe walking, whereas Grace's is less obvious.    But it is her usual walk.

Dr Escolar wants further testing done in the spring, particularly an Evoked Potentials test (whatever that is)  trying to discern how her synapses actually fire, trying to see if she has any degenerative disorder.  And as long as its not a degenerative issue, we can start getting some OT/PT/Sensory Therapy stuff started. 

Interestingly, Dr Escolar asked us both questions about our childhood and how we do/did things.  It was interesting to discover that Grace probably got these issues from Rob.  He did not learn to tie his shoes until he was 7, people tried to teach him, but he couldn't really be taught, he just had to figure out how to do it himself the way he could best do it.  And he is more clumsy than your average person, too.  Dr Escolar noted that he seems to have loose joints and a little low muscle tone going on in his torso.  He always was more comfortable sitting on the floor with his legs in a W position, but figured it was because of his kneecaps being on the insides of his knees.  Turns out that W sitting provides a wider base, and it is a compensating thing that Grace learned so she could sit more steadily.  So she seems to learn like him, they have some similar texture issues and sensory issues... like Grace likes the taste of meat but the texture creeps her out.  She is very sensitive to loud noises, she is very sensitive to clothing material. That sort of thing.

Anyone who has input on activities (she is in gymnastics already) that would be OT/PT in nature that I can start doing with Grace would be great.  We play hopscotch and stuff like that... physical games have not been my forte, but it will help with her coordination.

I feel pretty good now, knowing that her school subject type cognitive skills are where they ought to be and seems pretty unaffected that way, and I am glad to know that we can make a plan to learn more about how to help her cope with her delays. I just thought a lot of this stuff was differnces in kids, but really, Grace and Lily are very similar in their physical abilities at this stage.