A new board!

By request, a board especially for those parenting children with special needs.

Awesome!!

Hi to all...i am fairly new to this whole site and only found it as i am due for third baby around august this year....have a 14 yr old son, and a 8 yr old son who has autism. he has been diagnosed since the age of 2. He is a challenge but a real character and we love him dearly..would have to admit i am a little nervous about another baby. before we had him i never even considered the fact that we could have a child with special needs. we were young and healthy and i hadnt really heard much of autism. Now i am much more worldly and realise that anything is possible. i am a firm believer in that we were gifted him for a reason as i am sure other parents of special needs kids are too. We are of stronger mind and spirit and have the heads to cope. would love to hear more about your journey Kiwigal as he must be at school now..i am a few years ahead and would love to know if i can offer you any help and suggestions. my son is considered on the 'high functioning' end of the spectrum and attends mainstream..but boy i wish i knew then what i have learnt now!!! i am in chch having moved down from auck about a year ago...would love to hear back from you

Hi I have an almost 4yr old boy , Blake with Down Syndrome. We are tackling Toilet Training at the moment and I would love to hear from any one who has been through this with the same disablity as Blake. He doesn't speak and so cannot tell me he needs to "go". However just in the last week everytime I have sat him on the potty he has wee'd. So we are getting somewhere but it is very frustrating!!!! Any ideas would be great

Jo, are you linked in with any child development service? They would be able to help out with this. I think Makaton sign is sometimes used with kids with Downs Syndrome - your local speech therapist would be be able to help here.

Hi Caro
How did Jack get on with the biopsy. I dont know about neutropenia but found another chat where a Mum says her little one has this also see below. good luck
www.treasures.co.nz/Default.aspx?DN=499763,547,523,1...

Hi,

Thank you Maya for starting this forum, I find it really hard to talk to people about my little girl, so I tend to stay home. I guess in time I'll be braver but for now, being about to comunicate via the internet is a lifesaver for me!

My little Ava was born in Jan and just didn't seem right.... she looked a little odd but was doing ok as far as growing and feeding went. At 6 weeks I went along to an appointment only to be told we needed to check her Chromosomes, it was devastating..... we have a long wait whilst the results came in.... only to be relieved when the results came back normal. This relief was short lived though as it was becoming more and more obvious that there was something clearly wrong with our girl.
To cut a very long story short, at the age of 4mths Ava was Diagnosed with a very rare chromosome disorder called Pallister Killians Syndrome.   www.pkskids.net There are less than 300 worldwide. Amazingly there is a little boy in Whangarei, whom we have met.
Basically we do not know what to expect from our little girl but so far she has global delays, and at the age of 8mths she is more like a 8 week old.
We are doing ok... but I find it so hard emotionally, our days are filled with therapy, feeding and housework. She is thankfully a happy girl.
I feel like I am in a constant state of mourning. Every stage that our coffee group goes through is like a knife in my heart as a think about the life that my little girl will never have and my dreams for her that will never be.

I promise I'll try to be happier on this site in the future!!!! Or none of you will ever want to talk to me! I guess I just get really emotional whenever I think about the reality of my little Angel.

One of the daily challenges I have with Ava is constipation... So I am eager to hear of any solutions any of you may have found. Constipation is common with Babies and children with Hypotonia ( low muscle tone).

If there as anyone out there in Auckland who wants to at some stage meet up.... I really like the idea of meeting other Mums who understand. One day at a time.

Sorry for the book....

:-) Erin and Ava

HI Drumstx,

I just found this group on Facebook "Neutropenia Support" there are 412 members.
You have probably seen it already.

I have found alot of friendship and support online via the PKS Kids website and now have 30 PKS Mums as friends on Facebook... it has been an incredible support to me. I hope you too can find this type of support... It still doesn't stop you from feeling completely alone.... but at least it makes me feel like others understand.

Erin

Just thought I'd log on and see how everyone is doing?
Its been quiet on this forum.   Did I scare everyone off? LOL hope not.

Ava has been doing well this week. And I have managed to get a couple of really good sleeps WOW I feel like a new woman!

Well thats Hi from me!

Hi Drumstx,

You poor thing.... How is Jack doing now? all over the chicken pox?
LOL I know what you mean about Doctors I am currently trying to change my Dr... last time I went in trying to find help and solutions for Ava's constipation..... and she told me it wouldn't be a problem for much longer as Ava would be moving around alot soon!
I don't think she even read the info I gave her on PKS... Ava may never move around. I should have just burst into tears in front of her! That may have opened her eyes a little.
Breath...... rant over!

Generally we are doing well... I'm soooo glad that the weather is coming right as I have been so house bound all winter! I'm really enjoying getting out and about with the pram.

I hope everyone is doing ok...