Parenting babies and children with special needs support/chat thread?

[DaintreeDream]

I was wondering if any one would be interested in joining in on a 'Parenting babies and children with special needs support/chat thread'?

There seems to be a lot of parents on BB that have children with special or additional needs, these needs may however be individual to that family (meaning my DD is hearing impaired and I do not know of any other hearing impaired toddlers on BB) so I thought it would be nice to have a place to come and chat with other parents who understand what it is like to parent a child with additional needs.

This could also be a place to come to find support for any upcoming appointments or surgery your child my be attending in the near future as this can often be a stressful time with alot of unknowns and fears.

When I fell pregnant with my second baby I knew there was a possibility that she could carry the same condition as my DD1 although the woman of BB are wonderful and offered alot of support during this time I would have loved to have chatted with parents who truely understood my fears as it is something they have or will one day be facing themselves.

I think support for parents of NICU/SCN babies is important, my girls were both in NICU/SCN however they were not prem so I feel that I do not fit in when chatting in a NICU based thread as their 'problems' were/are sometimes different to those of prems.

Also, chatting about the day to day parenting and just our family life in general.

I have only touched on a few things, I would love to hear what others think .

[Early Kids]

I'd love to see a general thread that covers everyone!

[Bridg]

Vision Impairment is Logans disability. He has albinism.

[DaintreeDream]

Hello Sally and Bridg

Maybe we can chat in here and see how many others jump on board?

I will introduce my girls.

Matilda is 22 months she has a partial chromosome 5q deletion, pierre robin sequence (cleft palate and small jaw) her jaw was destracted at 9 weeks of age and her cleft palate is yet to be repaired, we are on a waiting list for approx. September, she is fed via a naso-gastric tube and has been since birth she does eat minimal solids but does not drink anything orally, Matilda also has moderate to severe hearing loss and wears a bone conductor hearing aid resulting in speech delay, she also has severe sleep apnea. Matilda spent 3 months in NICU/SCN.

Annabelle is almost 4 months, she has congenital heart disease - hole in the heart and coarctation of the aorta, she had open heart surgery at 6 days old. Annabelle was on a naso-gastric tube for just over 5 weeks when we finally were able to remove it and she is now fully breastfed. Annabelle was in the cardic ward and PICU for 16 days from birth.

I 'think' I have covered everything.

I would love to chat with other Mums (and Dads) with children with additional needs as sometimes I find myself saying 'oh don't worry your child will walk when they are ready, Matilda didn't walk until she was 21 months' - then I remember that she has a chromosome deletion and feel that it doesn't really count as she is 'different' if this makes sense?

[Bridg]

DD- I'll introduce Logan. At approx 4 months of age, the mchn noticed he had nystagmus. so sent us off to Melbourne to see a pead opthamologist, where he was diagnosed with Oculocutaneous Albinism. He can see a shape and colour at his arms length, but needs to have it pretty close to his face to get any detail. He can't pick food up and eat it, as he can't see it. He is a little behind in his development, but the mchn has organised an OT and physio. He cannot open his eyes outside if it's really bright.

Your girls sound so amazing, and like they are little fighters.

[Early Kids]

Sounds like a plan!

The first thing I wanted to say that it doesn't matter if your bub wasn't prem, if they were in the NICU (whether it be 1 day or 1 month) you still have a place in the NICU section on the forum!

Now for an intro lol..
Brendan was born at 30 weeks spent 6 weeks in SCN (6 days NICU) he is now 3 and has a significant speech/language delay, Sensory Integration Dysfunction, hearing problems (hasn't passed a test since the first one and re-occuring ear infections/glue ear) his paediatrician has also labelled him hyperactive and has warned us he is showing all the early signs of ADHD. He also has some bowel issues which we will be looking into after his next paed appt (in May) ATM these are all the diagnosis we have.... I have a feeling we are not at the end of our road yet....
*ETA* Brendan sees a range of specialists throughout the year including... paediatricians, child psychologists, audiologists, ophthalmologists, child health nurses, speech therapists, occupational therapists and he is also on the waiting list to see an ENT. He used to see a dietician too.

Tristan isn't what I would call special needs, but anyway, he was born at 34 weeks spent 6 days in SCN and a further 2 days on ward before being released on an early release program (discharged at 11 days old) he is now 9.5 months and attends physio and speech therapy. Physio is due to him having a small leg issue, his legs and feet turn inwards which is thankfully self correcting (and would have been worse had he been born at term!) He is also petite for his age (7kg 67.5cms) and is on a monthly CHN check-up routine.

I think that's all lol

So hello!

[MistyFying]

Hi everyone... why don't we see how this thread goes, and if there seems to be enough interest we can continue it (along the lines of the support thread for parents of kids with ASD).

While I'm here.... my DD has a significant speech language delay, and also some fine motor delays as well.

My son was born with congenital heart defects and had heart surgery when he was 3 days old, and then again at 3 months. He was hospitalised during this time. He's now a happy 7 yo.

[tietanyan]

Hi all
its been a long time since i have posted on these forums, i did it quite often when i was pregnant. let me introduce myself, im a 30 yr old mum to 3, my youngest, Jethro has low muscle tone issues (Hypotonia), going to canberra on monday (we are in nsw) for a few days to run some tests, he has had physio since june of last year(13mths old) with slow but huge improvements. Everything that he has symptoms of is pointing to CP as well as stroke, trying not to dwell on it too much as we wont know until he has the MRI, but his physio and OT has mentioned it to me (out of physio sessions) and also Jethros clinic nurse "suggested" it as a possibility. Anyway, thats my story, still reading through everyones posts, but your kids sound wonderful, precious bundles!
chat to you all soon
its going to be a long week so i think i will be visiting most days

[Early Kids]

Bridg, slowly my hard work is paying off, it took many many months, particularly with the speech side of things before we started seeing improvements. Last May (2 corrected) Brendan was assessed to have delays in all areas, but the fine and gross motor weren't too far behind the normal limits (the only thing which kept him from being diagnosed with GDD (Global Developmental Delays) was his fine motor skills, because he scored within normal limits (albeit on the bottom end) over-all he only just scraped in), which I am hoping he has caught up with now at 3 corrected. Tristan, in my opinion didn't really need physio. We were already doing everything at home to help his legs which is why I believe he improved so quickly. The physio basically keeps an eye on it.

tietanyan, hello! I hope everything goes well on Monday xx

[Isaiahs mommy]

Im not sure if im posting this correctly.. I love the idea of the chat topic.
My name is Crystal and I have 2 children. My son Isaiah has developmental delays, CVI (Cortical Vision Impaiment) and is going to get checked for CP (Cerebral Palsey). My son has a lot of issues with feeding and develpment and no one can explain why. I love the idea of this support group and would love to chat. Again I dont know if im even posting this right.

I was wondering if any one would be interested in joining in on a 'Parenting babies and children with special needs support/chat thread'?

There seems to be a lot of parents on BB that have children with special or additional needs, these needs may however be individual to that family (meaning my DD is hearing impaired and I do not know of any other hearing impaired toddlers on BB) so I thought it would be nice to have a place to come and chat with other parents who understand what it is like to parent a child with additional needs.

This could also be a place to come to find support for any upcoming appointments or surgery your child my be attending in the near future as this can often be a stressful time with alot of unknowns and fears.

When I fell pregnant with my second baby I knew there was a possibility that she could carry the same condition as my DD1 although the woman of BB are wonderful and offered alot of support during this time I would have loved to have chatted with parents who truely understood my fears as it is something they have or will one day be facing themselves.

I think support for parents of NICU/SCN babies is important, my girls were both in NICU/SCN however they were not prem so I feel that I do not fit in when chatting in a NICU based thread as their 'problems' were/are sometimes different to those of prems.

Also, chatting about the day to day parenting and just our family life in general.

I have only touched on a few things, I would love to hear what others think .

[MistyFying]

Hi Crystal... welcome to BellyBelly And yes, you are posting this right

[Early Kids]

Hello Crystal, welcome to BB

Brendan had his paediatrician check on Tuesday and has been informally diagnosed with PDD (an Autism Spectrum Disorder) We have now been referred on for formal testing so he can get an assistant for daycare and some other help.

Hows everyone else?