Parents of children with special needs

Hi there I don't have any children with special needs but I did read what your son has. I had to study this for a human development paper I did. I wsh you the best of luck with him.

Hi....my child doesn't have special needs but my brother has a very rare disease(only a handful in the world ever)and is getting progressively worse and his best friend died in his teens from MD :( I'm very sorry to hear your son's diagnosis....but as you say medicine is advancing all the time..

Thanks Becks your help is greatly appreciated.

Kerri -Anne I'm sorry to hear about your brother and his best friend. Life just really isn't that kind at times and to good people too. I have experienced a number of bereavements in my time and now with my son getting DMD it just seems like bad things just won't stop happening to my family and I. I might be a carrier for DMD too so if I decide to have more children there might be a 50% chance they will develop DMD if they are a boy and becone a carrier for DMD if they are a girl and subsequently will have the same sort of risks if they decide to have children. I know that life is full of ups and downs and I'm learning to focus on the positives. It's just hard to see the positives at times when bad things happen. Well that's how I feel anyway.

 

 

Malibu,
I don't have children with Special Needs, however I worked many years in London with a very rare disease that the most precious 4 year old had.
Phoebe bless her, had spots on her brain that could not be cured, she was told things that were impossible.
My Mum has specialised in Special Needs so I have been around childrenw with dissabilities all my life.
What is the dissability that your wee son has? I have book after book on all dissabilities I am more than happy to lend them to you.
You just have to ask

Good Luck Hun, I learnt with Phoebe that you just never give up. By the time I left her after 2.5 years, she was a walking (with aid) talking, going to loo by herself. Things the specialists said she would never do.

I wanted to teach Phoebe her colours, everyone said I was mad and that I would never be able to do so.
I asked Dad to send me over 5 packets of smarties, after dinner and before bed, we would sit together and she would have to choose the colour I said, once she had done so and correctly she was allowed to eat them. Within the month Phoebe knew her coulours as well as other children.

So don't give up hope, you know your little man. Enjoy every little thing he does big or small.

maudie23, Thank you so much for your post. I am having a really bad day today and reading your post helps me to put things in perspective and to stay hopeful. My family and I had a busy day yesterday and I think we did a bit too much. I went to bed and just couldn't stop thinking about the fact that my son doesn't even know about what might happen to him over time  but that we do and I felt so terrible for him. I also kept thinking thatat school he will have no friends and that he will get teased etc like I did when I was at school. But you are right you just can't give up  and to read your post was like hearing that song " Don't worry about a thing, because every little thing will be alright." I think I worry more than my four year old son. I didn't get much sleep last night so I'm absolutely stuffed today which I thinnk is the main reason why I'm not dealing with things very well today. By the way my son had Duchenne's Muscular Dystrophy. Here is a link to a web site containing info about what it is etc. I'm not too good at explaining it. Thanks for your support.

kiwigal, I'm sorry to hear that your son has mild autism but it sounds like you and him are doing really well. Did he have any behavioural issues before he was diagnosed? If he had, did others assume that it was your parenting making him have behavioural issues? I had to fight the system to get my son the help that he needs. The organisation that was supposed to provide the help just sent me on a parenting course insisting that there wasn't really anything going on with my son medically, that it was merely my parenting that was causing the  behavioural issues. Now though I know that a child suffering from behavioural issues is a symptom of the disease he has. I'm glad you got help sooner rather than later. I had to wait two years to get another appointment with the paediatrician! Now though things are finally improving. It's just sad that in a lot of cases your child has to have something pretty serious before they get any help.

My brother had loads of friends at school and my Mum had the same worries about him..so hopefully your son will be the same.. big huge hugs to you ....I hope today gets better for you.. I worked with IHC children and autistic children and loved the work but I have seen how super hard it is for the families:(

OMG..that is awful them blaming you....some docs are hopeless....we are very lucky having such a great doc who refers us to who we need to be at I didn't realise how rare that is!

MalibuBarbie, I'm hoping you've been put in contact with the Muscular Dystrophy Association? I've had a bit to do with them through work (I have been involved in running specialist assessment clinics for adults with genetic degenerative conditions) and found them helpful. They'd also be able to link you in with other families who are going through/have gone through similar experiences if you'd find that helpful.

That said, you may well have been in contact with them already!

It sounds like DMD is a fairly new diagnosis for you - it's a HUGE thing that you are going through and must be a really hard, challenging time for you.

I find out my results about whether or not I am a carrier for DMD tomorrow. We did plan on having a big family but plans might change. Re: test results. I have been given some info about the neuromuscular association today after seeing our physio. I have yet to read through it but after a quick glance it looked like it might be quite helpful to contact this agency. I am trying to have a good attitude about this diagnosis but I do feel pretty angry at times, like life is so unfair. But the diagnosis is fairly recent so maybe with time I will feel differently. I'm sorry to hear aout you boy james. It's good to hear that you are starting to pull through. I hope that I can do the same eventually. With all of your support so far I feel like it may be easier than I had expected so thanks all.

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).

Hi,
I am a Nana of Caitlyn The Kelly is her Mum but as some of you may know Kelly's 22 year old sister has developemental delay and epilepsy.
I often wish she was doing all the normal things that Kelly was doing, boys, parties etc but one of the most important things was being part of a support group many of whom I have made good friends with,