More than 1 special need child

[mummy3]

Anyone else in this boat? My 6m old little boy has just been taken on by early intervention for development delays, mostly gross motor, as well as failure to thrive, that makes 3 of my kids in either early intervention or special ed kindergarten. Its getting very difficult to keep up with schedules

 

[essie0828]

Oh my! Not in the same boat yet but we do plan on having another lo and we have a DD with CP. I have had 3 losses, one in the second trimester so pregnancy is risky for us. I have to take high dose thyroid hormones and have since childhood. Kinda makes having babies difficult but I would do it again. There's no love like it, and nothing more awe inspiring. My baby beat the odds and she keeps beating them everyday. I'm the luckiest human in the world to get to witness this. I would totally do it again even if I knew my child would be different. That being said, I understand the hardships involved with only 1 special needs child.......multiply that by 3 and I may be pulling my hair out. Wow hun I can't fathom it. You gotta feel like your brain is scrambled most days. Didn't want to read and run.

 

[mummy2o]

I will be there in a few months. My son has severe autism and it is really genetic in my family. Considering my granddad, my dad, his brother and sisters, all my cousins, me and my sister all have varying forms of autism, I'm really not holding out much luck for this baby being normal. I think as long as I'm really organised, I'll be fine with appointments and as DS is older after school activities it should all be fine. Plus OH works from home so if I did mess it up, I have the option to count on him, which I know not everyone has the luxury of.

On the plus side mummy3 your doing an amazing job, and your children love you regardless so keep up to good work. Just remember to schedule you time once in a while otherwise you'll completely loose the plot!

 

[BlueHadeda]

O yes! I hear you. Sometimes, it gets really hectic. I've bought a new whiteboard scheduler for 2014, which I use to keep track of everyone's appointments.

My eldest only has epilepsy (as far as we know), and is currently siezure and medication free. So he just have the normal hectic school and sport schedule.

My second is currently being investigated for either 22q11.2 deletion syndrome or some other chromosomal abnormality. She has psychiatric issues, learning dissabilities, behavioural issues and some physical dissabilities due to a tethered cord.

My third was just diagnosed with heart disease, is under investigation for mitochondrial disease, a lung issue and a blood issue. He's starting school in a few weeks' time, but I don't think he'll need special education like his sister does. At least, I haven't noticed any learning problems so far.

My baby seems perfectly fine, touch wood.

What do you do with the other children when one has a doctor or therapyst's appointment?

 

[mummy3]

Bit of update here! Its been awhile, so hectic!!

Firstly, I was recently diagnosed with classical ehlers danlos syndrome and the geneticist tell me this is why my kids are preemie, it causes the pprom. My 3 year old who had a preliminary dx of rett syndrome now is suspected to have my ehlers danlos and autism (she had a full speech regression and now is slowly regaining words she also has extremely high pain threshold and has had seizures), she has been in early intervention since 4m old for her global delay and is very recently making alot of progress, we're down to a delay of about a year behind. She should be starting at special ed preschool in the school district next month when she's 3 just like her big brother did. That will be her off 5 days a week getting most of her therapy there so just the little guy getting his during the day.

The little guy is having a bit of a rough time. He's also low tone and has delays of more than 50% in everything except social which is ahead! He has also been in hospital the last week with his FTT and is fed via NG tube now. We're hoping when he can absorb more that he may get a bigger development spurt. He has OT and PT once a week, a infant educator 2x a week and 2 nurses visits all at home to fit in

Its crazy busy, always forgetting appointments until the last minute and trying to work the logistics I do have a nanny though and she's a lifesaver because I physically find it very hard right now, my joints are just giving way constantly and I cant drive with having epilepsy. Will say that organisation is key, and its ALOT of fun having a big family Crazy schedule aside its totally worth it!

Essie, do you have hyper or hypo thyroid? I have a hyper and for a little gland it can cause alot of trouble! I read about your little girl, I need to not be a lurker She reminds me of my 3 year old, they even have a similar name You're very lucky! They do make everything worth it

mummy2o Funny you should say that about autism being in the family, that seems to be the case here too. Do you know the cause of the autism in your family? Having someone else at home is a life saver it really is, even just knowing you have someone to fall back on Organisation is needed, a very good organiser esp (unless you're like me and lose it ) What extra curriculars are you thinking for your son?

Blue, how stressful! Even a normal school schedule is hard work! Thats brilliant your first son has his epilepsy under control What kind did he have? I have left temporal lobe epilepsy. Whats involved in the deletion syndrome and mitrochondrial disease? Sounds like you have an awful lot to fit into your days too I like the whiteboard idea, less chance of losing it!! Its hard to occupy the others during appts, usually we pack toys and snacks or if its at home the EI therapists are good at letting Anja borrow toys that Eilidh/Alasdhair are not using How do you do it?

 

[sun]

Thanks for the update! So interesting about the ehlers danlos - we had a follow-up with our geneticist and they suspect that with B as well. Apparently what we've always been told is hypotonia and hypermobility is actually probably connective tissue disorder? We just found this out a couple of months ago and have still to get blood testing done - oops. I was a bit bummed out though since the connective tissue can cause lifelong pain/problems

But AMAZING about the change in diagnosis from Rett! And so fabulous that she is getting more words! So positive!

 

[mummy3]

Yep we've been told the same thing about hypotonia and hypermobility It does suck because yeah it does hurt and theres so many different ways it can cause effects. Best thing can do though is to do the testing and work around it, theres a wide spectrum of how it can affect a person and theres at least 10 types so its important to have the geneticist narrow it down. What kind are they thinking for bun? We got type 1 so thankfully no huge chance of vascular issues! PT and OT are a great help for the kids. Does B have autism traits? So far I have 2 with autism dx and they're the most bendy! Is it a random mutation for you guys or does anyone else in the family have possible EDS? How's little lady? Sorry million questions! Cant believe how fast your pregnancy is going too Almost at the end now!!!

Cant tell you how happy we are!!! She had regressed so far when we got the provisional retts dx The last few months have brought so much happiness Now she's about to turn 3 and we had her preschool final meeting at the school district yesterday and she starts fulltime school next wednesday! She was found to have moderate/severe autism during the testing but there was so much improvement, we can totally work with this She'll get 2 hours a week of speech, an hour of OT for her extreme sensory issues, 8 hours ABA and the rest is academic instruction They said she wasn't able to go to her big brothers old preschool though because she needs more help so will go and visit the new school and see what the new teacher is like

 

[essie0828]

Hi ladies

Mummy3 I have hypothyroidism and you are right, so much trouble out of a silly little gland. Good to hear that your DD will be able to start school soon and will be getting the extra help she needs. I'm still terrified of DD going to school. Hows the wee lil guy doing?? Is he feeding better?

We had a surprise BFP on Valentines day and actually have #2 on board. MS is kicking my butt and DD's therapy schedule is picking up. We are adding hippotherapy to her schedule to help her balance and core strength. Its basicly horseback riding with an occupational therapist doing therapy exercises at the same time. This is going to be one heck of a juggling act when #2 gets here. It's still the early days and we have a history of miscarriage so nothing is for sure but we are hopeful.

 

[mummy2o]

I would agree with riding. My son has been going for about a year and a half now and his balance and co-ordination has picked up no end. He has more strength in his body and can balance on P.E. benches and even jump off them, with no support. I won't say going weekly is easy, especially if he's engrossed with what he wants to do and sometimes have a 30 minute battle getting out the door, learnt to leave for everything in good time, but he loves it when he gets there. My son has also started Piano lessons this year with a lady he's known since pre-school. She's brilliant with him and works on his level rather than his age. He also goes swimming Tuesday afternoon's most of the time. The school basically told us to take him out of school and go swimming, which we do most times, but as mum's we don't always have time in the week to do something. Last week we cheated and went shopping and to the library instead, which was just as educational as we met a smart nerdy man who told him in the ins and outs of the library and how everything works. They had a great time.

Almost at the end of my pregnancy and looking forward to it being over. I think I want this baby out now. As much as I'd love to give birth on the 27th as its my mum's birthday I'll take the first elective section date they can give. My cervix is closed so they won't induce me due to previous section.