Adults and children with hydrocephalus

[ainemc]

I was just wondering if there is many adults on the forum who have hydrocephalus? If so, what do you guys do for a living?
Also, are there any parents who have children at school or anybody studying who have hydrocephalus and does it affect their progress in any way?
Its a long way off before Caitlin goes to school but my health visitor mentioned her needing a classroom assistant and it got me thinking of the chances of her needing an assistant because she might struggle because of the hydro. Its an even longer way off before she will be thinking about a career but i guess im just looking for reassurance that she isnt at a huge disadvantage of doing what she wants because of her hydro.

[Christine1970]

Well I am an adult that has hydro. I had a shunt placed at 7 days old. Never had issues or problems with it until i was 19 yrs old. I walk with braces and crutches, drive a car with hand controls. Live at home with mom and dad to save money for my future with my boyfriend. Oh I am 39 yrs old.
I have worked in the travel industry as a reservationist on the phone and in a travel agency in person with people. I also have been a missionary living again with my parents in Budapest, Hungary for 8 yrs. We recently relocated to NC and I am now working PT as a receptionist at a Hospice Center. I never did go to college just was not my thing at the time. I have taken classes though to be trained as a travel consultant. Looking at going back to further my education in that field in a few months.
I am free to chat anytime. Also check out my blog journeywithsb.wordpress.com


christine

[Dodger67]

Why does the health visitor think she will need an assistant?
Is there actual evidence of impairment?

The vast majority of people with hydrocephalus have no impairment and of the few that do, most have only minor learning dissabilities.

[smoop]

According to my book, "Living with Spina Bifida" the areas of weakness are as follows and are due to abnormalities of the brain, most notably hydro & Chiari:

Attention/organizational deficits
Impaired abstract reasoning
Visual-perceptual impairments
Poor eye-hand coordination
Poor visual-motor integration
Writing
Mathematics

[LillyPie]

Lilly was tested at the beginning of this school year and showed signs of Visual-perceptual impairments ... of course they also saw the need for OT and PT... They said she has issues with copying information, the way she processes the information is different... but from what it sounds like she is doing fine and going to regular kindergarten next year. Just keep up with OT and PT if she gets it. When she gets old enough allow her to cut paper with scissors and color a lot, those types of hand eye stuff seem to help. I help Lilly a lot when she's not in school with stuff like that. Cutting, coloring in the lines, writing her letters, copying patterns with blocks.

P.S. I think having an assistant with her all the time should be very last resort, our kids need to feel independant and become independant ... ya know?

[Summer25]

I am 26 with hydro and a VA shunt. The only issues I had were with orginization and math. I however, graduated on time with a regular diploma. I never had any sort of aide and only had OT and speech therapy when I was about 3 for about a month...lol. PT also stopped in 6th grade due to being pulled out of classes I needed to pass. I work for a wheelchair company doing office work and trying to finish college. The only thing I needed in school was to be shown how to do a math problem. If I wasn't shown, step by step, I couldn't do it. I made the mistake of taking a computer taught math class my first semester in college. I ended up failing it, but the next semester took it again and made a B. I also can't do geometry. Give me a statistics or algebra problem and I can give you the answer. Geometry just doesn't make sense to me. I don't see why they say that. Kids need to learn how to make it on their own. I knew someone that had and aide and she did all of his work for him. Then when he got to college he thought he could get an aide. He got one alright. One that just wrote what he said...lol. He unfortunately learned the hard way. So it is easier to start younger and get them to do it themselves.

[ainemc]

Dodger - No evidence of intellectual impairment, her development is normal for her age. My health visitor just said that she might need a classroom assistant when she goes to school and it got me thinking about the problems she might have. If hydrocephalus can cause these problems, i don't get why surgeons don't operate immediately when hydrocephalus is present. Caitlin had hydrocephalus from 20weeks gestation and they waited until she was 15days old before a shunt was placed and her hydrocephalus had been increasing almost every day from birth. I hope that their decision to wait those 15days havent increased her risk of having the problems that Smoop mentioned.
Lily - Pie & Summer - What is an OT and a PT? I totally want Caitlin to be as independant as she can be, and will only let her have a classroom assistant if she really needs too. I didnt get Maths either, it was my worst subject! I really hope that Caitlin has the ability to gain a diploma or a degree but then again i think i would just be happy in whatever she does as long as shes happy. I guess i just worry for her too much!
Christine - Thanks for replying. You seem to be well travelled! I will have a look at your blog. I love reading all the blogs from the forum, it really helps. I would have one too if I knew how to create one!!

[Summer25]

OT- Ocupational therapy. They work with the hands and a lot of hand eye coordination.
PT- Physical therapy.