Special Needs Kids

Hi, I was just wondering if there were any parents on this fab site with kids who have special needs or disabilites. I have a son who has cerebral palsy, has just been diagnosed again with epilepsy and he has a feeding tube in.
Would love to exchange stories and ideas with other parents.

Gaye

Hey Marlene

My son Daniel is now 11yrs and he was born in Lower HUtt Hospital before spending a week in NNU at Wellington Hospital. How old is ur friends daughter?

Gaye

Hi Gaye, I dont have any kids with special needs either but I have done a bit of work with CP kiddies (I am a physio). What things is Daniel able to do and have trouble with? What kind of CP? Hope you dont mind my questions, but I so loved working with them and would love to do it again sometime.

Hi Deharn and Aimee

Thank you so much for your comments and your care and concern. I have another son, Jack, he is 17mths and perfectly normal.
Daniel had spastic quadriplegia (oops)moderate to severe cp, he had a massive bleed to his right temple when he was born so has increased muscle tone on the right side. He can talk, uses a walker to get around, is still in incontenince nappies although we are trying to toilet train him. He had failure to thrive when he was 6yrs old so the decision to do a gastrostomy was decided but the nissan was thrown in at the last minute. Bad move, cos it went horribly wrong!!!

We have support but alot of the systems we have in place, let us down and fail us.

He is currently in a satellite class within a mainstream intermediate this year which is where we were aiming for 4 years ago and were told that our expectations were too unrealistic and too high.

I could go on for hours about Daniel, but I am willing to share more if you want to keep in touch by email.

Lots of thanks again
Gaye

I too don't have a special needs child, but my brother has low-grade/mild cerebral palsy as a result of a brain injury at birth (Mums waters broke at 34 weeks and she was induced but had an allergic reaction to the oxytocin and John was born within 45 mins of the first dose. He was also incorrectly diagnosed with Cystic Fibrosis - they discovered he didn't have it when he was two and think that his prematurity is why his pancreas and lung function appeared to be impaired)

My sister is also epileptic, but took Epilim (sp) for 2 years straight and now hasn't had a seizure for more than 10 years. She still has to be careful with strobe lights etc. and can't do high stress/adrenalin things like diving, parachuting etc. but for the most part has a normal life.

I dont know what its like to be the parent of a special needs child but i do know what its like to be the sister, my younger sister Kate has developmental delay-basically she was 20 last sunday (my baby sister is growing up) but her maturity level is of a 4year old-she cant shower by herself, speak clearly, still has accidents etc and she also has a touch of autism, and has had epilepsy since she was 2.
Its not easy for parents but its also not easy for ur other kids, i will say this tho-these specialneeds kids really are "special" they have an innocence to them and truly know the meaning of unconditional love well after most of us have forgotten it.
Btw my mum is part of a special needs support group in our area (east auckland) perhaps i could ask her where ur one is?

i will get my mum to pm u if u like, they are very welcoming at her special needs group and they are also involved with a company called janet mcveagh recreate-its run by Kerrie Ohara( sadly janet died last year) and she and her staff are just awesome! they do swimming lessons take them on outings organise carer support and for the older ones (ie my sis) have sleepovers etc...and for the mums they have mothers weekends-where the mums take a well earned break and spend a weekend with friends in the same boat getting pampered and who knows what else (my mum goes all coy when i ask lol)
From what ive seen its made my mums life alot easier-actually i'll just pm u with my number if ur interested and just ask for sue-shed be happy to hear from u

Donna, I had no idea. I just had a read about Ehlers Danlos syndrome - what type do your kids have? Do they need any therapies or are they relatively functional? Is there much support available to you and your family? I really hope you dont mind me asking questions. I really admire mums like you Donna, esp doing it on your own. I hope you get time to look after yourself as well.

aimeejoy - Myself and my children have type III which is simply hypermobile type. We have been through orthopaedics as my 11 year olds ankles were colapsing in profusely. Otherwise help is limited. I have been meaning to join Ehlers Danlos foundation here in NZ, but have had little spare time for that. Spending more time trying to source help with the aspergers, for my four year old as he lacks understanding many comprehensions, is still not toilet trained, walks out onto a road without looking. Time for me, well um, not really, spare time is working away on my web site (which was ordered down by the support group here in NZ) so have to get it literally replaced with a new one with a different name. I also am studying this year, certificates in retail, and hope next year to move to Australia. No I never mind people asking questions, I too search up a topic when I hear of others.

jdjzmum - yes will pm you my details.

Must run, my house is being destructed

Well to be honest it is something I have only briefly considered. Due to school, and up till last Xmas, Logan and Hannah were having access visits with their father fortnightly approximately, and my youngest attended day care 10 hrs a week, then day care of 6 hours and afternoon kindy, which has been a better arrangement for us all. Now Marshall is starting morning kindy next week so we don't require the day care, as I want that time to work on him with social stories etc.

Edited by Donna.I