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

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 :D.

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

Vision Impairment is Logans disability. He has albinism.

Hello Sally and Bridg :hello:

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?

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.

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! :hug:

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!

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.

Sally- Your kidlets sound like fighters too. Have you noticed that they have improved by seeing the specialists? Logans left foot turns in, because his right hip is more forward than the other, but the pead doesn't want to do anything about it, unless it gets bad.

MistyFying- It would be good if we could keep this thread going. There are alot of threads out there for kids with special needs, but not many that focus on the parents, and the day to day things we face (that's what I have found anyway)

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
:pray::dance:

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 :pray:

Thanks MistyFying :D.

Matilda has a big team of specialists also, she sees a Neonate Paed, Cleft Paed, Plastics, Maxiofacial, ENT, Physio and OT, Speech and Dietican, Cardioligist, Nephrology and Respiratory.
I am happy that as she grows her appointments seem to be longer in between visits and we have finally got to the stage that we are able move to the country further from the hospital and I feel comfortable in doing so.

Annabelle, I would not call special needs however she was born with additional needs, spent time in hospital, had major surgery and still sees a cardiologist and dietican on a semi regular basis. If it wasn't for her visits to the cardioloigist (ultrasounds, ecgs) and watching her weight she would be a 'normal' baby. Our appointments have been pushed back to 3 monthly now and then they will go to 6 monthly and 12 monthy if all is well.

The girls are being rather fussy at the moment, I think they can feel that something is happening, with all the packing and me being so busy arranging everything for the move. It will be interesting to see how Matilda in particular handles the move.

Better go, Annabelle needs a feed.

It is lovely getting to know you and your children :D.

ETA - Sorry there were a couple of posts while I was typing, I will be back to read them later and aim for some personals :D.

Hi there,

My DD was a NICU/SCN bub too, but not prem, so have never really felt comfortable venturing into that thread! My DD Isabella (she mostly goes by Ella though :D) is 2 and a half (3 in July). She was in NICU/SCN for 3 months, then over to the Childrens Hossy and PICU for 3 months as we got too old for the mothers hossy! She had/has a lot going on medically, unfortunately at this stage no diagnosis other than 'Global Developmental Delay' or 'Sh*t Luck' as our cardiologist puts it!

Her story is really long, so will give you the general gist of things lol. She was born at 37wks (induced then emergency c sect), only weighed 4lb 9oz. at 2 days old transferred to NICU at the Mater as not feeding, holding temp, crying etc....was diagnosed with NEC (necrotising enterocolitis) and taken straight to theatre, had a stoma (illeostomy) created and we basically were told we would lose her. Had the usual NICU things happen for 3 weeks or so, as she proved them wrong and pulled through. Extubated and in headbox o2, then on nasal prongs so we got to go to SCN. During the next few months she had open heart surgery to repair ASD and VSD and close PDA, another bowel op that had most of her large bowel removed and a colostomy bag formed (which she still has), she was on TPN feeds until 5mths old, then on NG feeds which she came home on til about 10mths old. On continious o2 untill 2yrs old, and is still on it of a night time....she has trachea laringo malasa (basicaly floppy larynx, which adds to breathing difficulites), a paralysed left vocal cord and chronic neonatal lung disease.

there is so much stuff i have left out, but didn't want to bore you with a novel!! This is such a great thread to start, look forward to chatting to other mums/dads of special needs kids :)

Louise

Wow there certainly is some very special children out there :hug: I'm glad we are all able to share our journey's together xx

hi all
i love reading your posts, it makes me feel im not the only one!! Dont get me wrong, i do feel for all of you im not coping with half of what you lovely mums and dads do on a day to day basis. Anyway the reason for my post this morning (besides putting off doing the house work and waiting for my husband to get up) i managed to get hold of canberra hospital on wednesday to find out where we had to go etc, of course no one knew anything (wonderful i thought), so i managed to leave a message with Jethros doctor, he rang back on friday, ( i was shopping with the kids) my husband answered the phone, the doctor knew nothing, i was originally told that his MRI and X-ray could not be pre-booked, which i thought was odd, so we have all of these things we have to try to managed to do in 4 days and no-one knows anything about it. ahhh sorry i just had to vent, i dont like doctors at the best of times but this just tops it, but when it comes to your children you dont want them to stuff you around.
thanks for listening, sorry if i have ruined your weekend, just need to get that out!!
chat soon
Jess :dance:

Jess- Hello. Go ahead and vent if you need to. I totally understand how frustrating it is when you get stuffed around by doctors, especially when it comes to kids.

Sally- Glad to hear the therapy is making some improvement. Logan lacks in his fine motor skills, but gross he is fine.

DD- Enjoy the packing. That's one of the things I hate about moving. It's good that you can finally move to the country and that DD's appointments are getting further in between.

Louise- Hello and welcome. Sounds like you too, have a little fighter! It's awesome to see all these strong kids.

Jess, That sucks! I'm sorry you've been stuffed around xx :hug:

DD, enjoy the move! I hope it all goes well xx

Louise, hello and welcome :D

Bridg, from what I understand fine motor skills go with the speech/language thing so if they are delayed in one chances are they are delayed in the other too. Well that's what I've been told. lol

Having a rough few days here, had a death in the family and trying to sort some things out.

Hope everyone is well.

:hello: Welcome Jess and Louise.

Jess - Vent away, this a reason for me starting this thread, I have been stuffed around alot by doctors so I know how you feel and it seems that nobody seems to realise it affects the children.
I just remembered I was meant to have follow up appointments for Matildas kidneys (she has a horseshoe kidney and kidney reflux) and the hospital hasn't arranged the appointments (that were due a couple of months ago) so now I have to drive down (a 4 hour round trip) with the girls for the ultrasound and specialist, it is such a long day for the girls.
I hope you get a all of the appointments booked and the MRI gives you some much needed answers :hug:.

Louise - Your little girl has been through alot, some of what your little girl has gone through mine have to so I can understand some of what you have been through. I asked what has caused my girls to have the conditions they have and we pretty much have the same reason 'Sh*t Luck' as it is odd that we have 2 children with completely different defects but no reason for them. Matilda has severe obstructive sleep apnea and they would like her to use C-PAP but she just gets hysterical when the air is turned on, her airway was maintained with a nasopharygeal (sp?) when she was younger but obviously that isn't an option anymore, one of her major problems is breathing difficulties and although we can maintain it well it is preventing her to move forward and so we are stuck with her feeding issues. I look forward to getting to know you and Ella.

Bridg - It is amazing what the specialists can do. I started taking Matilda to physio/ot at about 7 months as she could roll from back to belly but other than that she would just lay on her back, she hated tummy time, couldn't sit or roll from tummy to back, by 10 months she was sitting and then she just took off, it was slow but I could see that it was the physio that was really helping her to progress, her gross motor has been our main focus until now but now that she is walking it is time to shift the focus.

Sally - I am glad to hear the Brendan has improved his speech with the help of speech pathologists, this is our next step. Matilda has hearing loss and wears a conductive hearing aid, she is 22 months and doesn't say much, she says 'Mum', 'Dad', 'more' and 'car' however she does not say them on a regular basis. She does sign some words like 'poo', 'dummy' and 'food' as a way to communicate, however I can tell that she is starting to get frustrated that she cannot communicate as she would like to.

DD, I hear you on the frustration due to lack of communication. I hope it gets easier for you guys soon xx