Microcephaly

[stinkerbelle's mom]

My friend has 4 son's and the youngest has microcephaly. He is 2. Just wondering what some things you can tell me about it besides the typical what causes it stuff.

He can walk, talks very little, and they are still sorting out his vision issues. He has a therapist see him once a week and they are talking to his mom about group therapy.

Just wondering if anyone knows any parent groups in MD my friend can join. Also any good therapy tricks or tips that would help with learning. Not sure what the therapist does with him exactly, but I tend to try repetition.

Please and thank you for all help.

 

[nursekimber]

My friend has 4 son's and the youngest has microcephaly. He is 2. Just wondering what some things you can tell me about it besides the typical what causes it stuff.

He can walk, talks very little, and they are still sorting out his vision issues. He has a therapist see him once a week and they are talking to his mom about group therapy.

Just wondering if anyone knows any parent groups in MD my friend can join. Also any good therapy tricks or tips that would help with learning. Not sure what the therapist does with him exactly, but I tend to try repetition.

Please and thank you for all help.

Hi, I'm Kim and our youngest daughter (3yrs) is microcephlic, we live in Ohio but I have found support from this site http://www.childrenwithmicro.org/statecontacts.html
Our daughter's doctor holds a resource fair every year and this year I met other parents who have children with Microcephaly.
I'm afraid I can't really give you any other advice as your friends son has more abilities than Kaleah. She has other conditions and is nonverbal, non ambulatory due to Cerebral Palsy.
But she does get therapy and your right, repetition is the key. As you know each case of microcephaly is unique and I hope the very best for him and his family.

 

[stinkerbelle's mom]

Thanks Kim. Best wishes to you and your family. I did check out that site yesterday, glad to see someone else who uses it. There is nothing in our area so I will try to have her contact them or contact them myself for her.

Her son has come a long way. I believe they originally told her he had CP, but apparently he doesn't. They are still sorting out his vision which may be a long time in coming.

 

[carj]

I would strongly encourage her to look up information on CVI, cortical/cerbral visual impairment. CVI can co-exist with an ocular visual impairment and often isn't identified in children with additional visual impairments.

Usually the parents know that something is "off" with their child's vision but the answers from opthalmologists may not explain the lack of, or unusual visual response.
An expert in the field of educating children with CVI is Christine Roman. You can probably google her.
Another great source for vision related articles is tsbvi.edu Texas School for the Blind and Visually Impaired.

Is he being seen by a Teacher for Students with Visual Impairments, in addition to his teachers at school?

 

[SueM in MN]

Since this is not about WDW, I am going to move this to the disABILITIES Community Board, where it will be on topic.

Microcephaly is actually just a description - the child has a head that is more than 2 standard deviations smaller than average for their age and sex. For some people, this doesn't mean anything, just that they have a small head. One of my youngest DD's doctors met that definition. My youngest DD is technically classified as microcephalic because her head size is small, but her doctors have always said that in her case, it is a 'normal abnormality' because her head shape is proportional and her head grew in proportion to the rest of her body (she is full grown, but just barely 5 feet tall - everything about her is small, but in proportion).
She does have significant disabilities, including Cerebral Palsy, but the doctors have said that her CP and other disabilities have nothing to do with her head size.

On the other end of the scale, there are people who have a small head that did not grow with the rest of their body; probably because their brain itself failed to grow. Skull growth is determined by brain growth.
There are also some syndromes that often have microcephaly as part of the syndrome.

So, a lot of the prognosis depends on what the reason for the microcephaly is, what the brain growth is and whether it is part of some other syndrome.
I agree with the other posters that repetition is key.

If she doesn't find any specific support organizations for microcephaly, she could try some that are not as specific. One I have referred people to in the past is Parent to Parent Network.
Here's a link to the 'About' page with a Maryland address in the contact area at the bottom.
http://www.abilitiesnetwork.org/services/support/parents.html