Parents of children with special needs

Flissty wrote: no, my service worked with neurological degenerative diseases - DMD, other muscular dystrophies, ataxias, huntingtons etc. Post the name, and I'll see if I have any resources or know anyone who might be able to help. The genetic counsellors can be fantastic sources of information. They can be reached through Auckland DHB (for the upper part of the NI) and Capital Coast DHB (for Wellington and the SI).

right it's called Spondyloepiphyseal dysplasia (SED) congenita

(follows an autosomal dominant' pattern of inheritance)

Hi There!

I am a Mum with two special need children, I Have three kids, two girls and one boy. My seven year old girl has ADHD and a range of learning and developmental disorders, I also have a 22 month old son who has down syndrome, heart defect and cronic asthma. It is great to have finally a forum up and running where we can chat about our struggles and rewards of having special need children. I am looking forward to chating to you all!

Hi all

I dont have any children with special needs, but my 9 year old cousin has Downs and DH's 17 year old sister also has downs, his other sister (9years) has mild Asbergers, and his mum has MS.  lol what a bunch we are!   I am a preschool teacher and have also worked for many years with IHC, SES etc working with children who have special needs. so the whole thing isnt entirely new to me lol.

We plan to TTC for our 1st child as of next August or there abouts, and I may be a carrier for the abnormal chrosome that causes a genetic form of Down's.  If i am a carrier I have a 20 percent chance of having a child with DS. (i guess this increases with age too...)  We have decided to not be tested for the gene, as it will not affect our decision to have children.  but it is something i do think about often. i think ill be lurking around this forum a bit

if anyone is in my position or knows anything about any of this id love to hear from you! for now we are just taking one day at a time and trying our best to prepare ourselves financially etc so i can be a SAHM whatever the outcome...but especially if we do have a child with special needs i wll be able to stay at home which is so important to me

sorry for the novel!

If any of you with special needs children including you silverhorn would like tickets to the Special childrens christmas party pm me it is fantastic and put on by one of the radio stations,
I have a 22 year old with special needs,epilepsy and global developmental delay,

ToniR wrote: We plan to TTC for our 1st child as of next August or there abouts, and I may be a carrier for the abnormal chrosome that causes a genetic form of Down's.  If i am a carrier I have a 20 percent chance of having a child with DS. (i guess this increases with age too...)  We have decided to not be tested for the gene, as it will not affect our decision to have children.  but it is something i do think about often. i think ill be lurking around this forum a bit if anyone is in my position or knows anything about any of this id love to hear from you! for now we are just taking one day at a time and trying our best to prepare ourselves financially etc so i can be a SAHM whatever the outcome...but especially if we do have a child with special needs i wll be able to stay at home which is so important to me sorry for the novel!

 

Hi there ToniR. I have a child that suffers from Duchenne muscular dystrophy which is an inherited gene defect. ( Well that's the way I would explain it anyway, although sometimes the gene defect that causes dmd can happen for no reason at all at conception or shortly after. ) I have been tested for the gene defect  but still do not know my results although it is not looking good. I also have a healthy unaffected son. The way I think about gene defects etc is that there is still the chance that they can happen for no reason at all so even people who may not be carriers for any gene defects may end up with a child or children who are affected in some way. I reckon there is always a risk and even if our children are healthy in every way I believe they are not promised to us forever in a day, sadly. I also feel that if I had avoided having children, had I known I was a carrier for DMD then I wouldn't have had either of my wonderful boys. The road with a child with special needs is by no means easy but underneath the special needs are awesome little children who we are priveliged to care for. In life there are risks with everything but don't let that put you off. Even if it is worst case scenario for you (which I doubt it will be. I know of a mother who was a carrier for a gene defect and only one of her seven children was affected and the risk was 50/50 with each child.) there will still be hope. Having a child with special needs doesn't have to mean the good times end there. And like I mentioned earlier there is a very good chance that everything will be fine. Good luck and all the best for your time ahead.

Hi everyone, I have 4 children, 3 of them are special needs, twin girls who are autistic and a boy who has a major eating disorder. The twins are 5 soon to be 6 and my little boy is 8. Life is so hard and very tiring. I have been a member here for years but due to life taking over I hadn't visited here for a few years, it's nice to be back and see all the changes including this forum.

hello everyone, its really sad to read all these posts about little children suffering with these diseases and conditions..your all very brave parents as i know how hard it can be on parents with children who have special needs. My sister has two boys,the oldest (four years old) has a condition that hasnt yet been identified by any doctors in new zealand..he was first put into hospital a year ago and has been in and out ever since..His side effects of this unknown condition include the constant flu,tummy bugs and the worse one is the seizures that happen in his brain..at the start of the year he was having almost 17 seisures a day which has caused him to be brain damaged..its hard seeing my sister handle this all by herself.. My nephew is not the same little boy he was a year ago,he never talks anymore and hes always sick either throwing up constantly or always asleep from the 6 experimental medicines they have him on each day. Has anyone else heard of anyone they know with these symtoms? itl be great to get more info for my family.. at the moment the doctors are thinking its a new strand of epilepsy.