Mum of special needs girl needs friends

[manc1]

I am a first time mum to a 19 month old daughter with special needs. Although my nickname is manc1 (I am originally from manchester), I live in cardiff. I work 3 days per week and my husband works very long hours so find that my week consists of 3 days work 4 days baby with numerous appts, physio, portage,ot,speech therapy etc there seems to be no down time and the local scope group meet on a day that I work. I have tried a few different classes but with no other special needs child there and no offense to the other mums but they seem to put my child in a box as different and keep there distance from me. I have several friends via the nct but again my child is the only one with special needs. I have also discussed this with my special needs health visitor and she has invited me to coffee mornings which I have had to decline due to work. I just want contact with some like minded mums where I can relax and chew the cud as it were. Are you out there?

[slightlycrumpled]

Hi manc, I'm sure there will be lots of people out there who will love to chat with you!

I have two sons and my youngest (5 yesterday! ) has special needs. It can be very lonely but if ever you can get along to a coffee morning then it's worth going along.

It really is difficult I know to fit in all the appointments alongside living a 'normal' life.

Unfortunately I live in the wrong part of the country to meet up, but I'm sure you will 'meet' lots of people to talk to here.

[pipintroll]

Hello manc1

I am in a similar position to you. Have a ds, 13 months, with special needs. We are just about to start various therapies with him, OT, portage etc.

His first physio session is this friday. He was referred at the end of July so it feels like we have been waiting ages.

Understand totally about going to groups with your dd. I never joined any mother and baby groups with mine except for waterbabies. In the pool it doesn,t matter if he can't sit or crawl. In fact I think he enjoys it more than the other babies because of the physical freedom it gives him.

Would your employer maybe let you change the day you work so that you could go to the scope group? Although it could be difficult to rearrange your childcare at the same time I guess.

My ds has no diagnosis as yet so I have no clue as to what groups or facilities are open to him as a special needs child. I am finding it very lonely at times. I do have two good friends who both have babies that are similar age to my ds but they both work full time now so only see them once a week at most.

I have only recently started to post on this board but have found that they are very welcoming and friendly and I'm sure that they will all be along soon to say hi!

[Kazann]

Hi I have 3 daughters and 1 son my youngest daughter has special needs she is nearly 7 she has social and communication problems and absence epilepsy and we think she may be on the autistic spectrum as well and we are looking into that at the moment.
It is very lonely and people do not understand children with problems and seem to label them as naughty.
For me chatting to people on mumsnet has really helped talking to other mums that know where you are coming from.
I hope you meet lots of new people on here to im sure you will take care.

[manc1]

I'd like to say thanks for all those that have posted, my dd is doing great apart from the frustration that I feel that instead of playing with kids her own age doing what they do at 19 months old all my spare time is taken up with these dratted appts. One of my husbands cousins had a baby in the summer and I've yet to see her as I have been so busy (maybe that's just motherhood for you). I have my mum down at the moment for 2 days and she is constantly comparing her to every other 19 month old, I've never been particularly close to my mum and I think that she thought when I had a baby she could be the mother she never was but I find myself constantly losing my temper with her. She has been down from manchester twice this year, the last time was for my dd's bday in march, her and my father are both retired. None of my husbands family can understand it and I DO feel ASHAMED when they won't come down (my dd is their only grandchild). Trust me, they`are made to feel welcome every time. have just had another row with my mum about this and got nowhere. I have been up to see them with my dd twice this year and with work and appts it's not easy. Anyway enough venting for now, just logged in to say thanks and will probably check in more often now.

[bubblagirl]

sorry to hear your having a hard time of it all it really is so hard when no one understands sn boards on here have been my life line

to have like minded people understand my tears of frustration my lonliness and to support me has been such a huge confidance boost and a help ive learnt more from her ethan in rl

my ds has ASD he is 3.5 yrs old with atypical sppech formation and also delayed speech having to fight every corner at the moment best thing i do is go to SNAP group on a mopnday and fri to meet other children with all types of sn and to talk to all other parents who are so supportive and understanding even if there childs sn is different to my ds we all go through same emotions

if you can arrange with work to go to these mornings you would be doing yourself a huge favour to be around like minded people in rl and for your dd

i will say dont compare your dd to others her age just enjoy every acheivemnet she makes

and calmly tell your mum to do the same without fighting leave that spirit to help your dd

as for people who dont understand we had that alot and now all have come round its a case of keeping them informed send imformation etc sometimes people are wary of what they dont understand

hope you dont mind me asking but what is your dd sn? big hugs to you x

[Romy7]

i'm not in the right area, but if you post on special kids in the uk, i think there are a few cardiff mums... agree with the finding groups - nail biting at first, but once you're 'in' they can be a lifeline...

[saintvicsta]

Hello Manc1,
Cardiff bird here - where are you?

[mumgoingcrazy]

Hi there, unfortunately I am the wrong side of the country for you as I'd love to meet up. My dd2 is 16 months with sn and meeting up (now twice a week) with like minded mums is an absolute life saver. I felt very low before as it was constantly in my face how behind she was, but being with mums who have sn kids is so relaxing and non judgmental. Try to join some groups if you can, it'll also be good for your DC to make some little mates too.

[manc1]

saintvicsta am in pontprennau area, my dd has cerebral palsy, weakness down left side, delayed development (19 months and not crawling)bad squint, learning delays and microcephaly. Delayed speech, but apart from that is an absolute angel, great eater and sleeper and a mega happy kid!!!

[saintvicsta]

Put some piccies up Manc! Read my profile for DS info - only 4months but sounds like he's following same path as DD - V little head too! Am with you on the hosp appointments - seeing neurologist tomorrow and neonatal consultant Friday and the poor boy gets his 4mth injections on Thursday. Bless him! Might as well live in the bloody Heath for all the time we spend there. You go to UHW too? We are in the process of part of his care being transferred to the community team which is good as we'll go to St Davids and we live in Canton. I am on maternity leave at mo - hoping to return to work full time in Feb (ish). If you ever fancy a break, cup of coffee in town (or in the concourse at UHW) let me know. I lurk on here most evenings. You on facebook?

[caitlinnjacksmummy]

Hey manc1, I also have a 19 month old ds with special needs,when is yr dd's birthday? Jack's is 2nd marh 2007, he is my youngest, also have a dd, 7, she is healthy.

My ds1 has a genetic disorder, resulting in severe epilepsy, hypotonia(v. low muscle tone) and hypermobility(v.flexible joints). He has global development delay, damage to left and right temporal lobes in brain, affecting memory, co-ordination and
so he won't walk a while etc, still, he is doing better than expected

He has just learned to sit, and physio sed hewill be standing soon, so over the moon, he is trying to talk now too. It is extremely hard work, but soo worth it, cud just kiss him all the time....i have pics up, have a look xxxx

[saintvicsta]

Awwwww, how lovely. I LOVE looking at other peoples pics (so nosey). What a handsome young man he is C&Jmum. You must be very proud of all his acheivements. Gabe has started to gurgle and coo with increasing regularity and volume this last fortnight. He is most active at bedtime, as soon as I put him in his cot. I am genuinely thrilled . Yet another thing they said he wouldn't do!

[caitlinnjacksmummy]

Thanku soo much saintvicsta!!

Hahaha I suffer from that form of nosiness myself!!!!

Thats gr8 bout yr LO, I now take what the professionals say he will and won't do with a pinch of salt

The physio came into house first visit approx 5 mnths ago and said tht Jack wouldnt walk til 4 or 5(may still be the case), but said he'd need a standing frame and special buggy...she now says he won't!!!

He has came on soo much over the summer even

What age is Gabe?

Jack was in his cot b4 we went on hols at start of summer hols

Now he is bk in my bed, as before, keeps waking up in cot, he is also on chloral hydrate t help him sleep as he gos hyper at bed time , but really want him in cot again, but scared too,as he takes seizures.

So long way off being in his own room....sadly, would love him to be , one step at a time xxxx

[saintvicsta]

gabe is only 4 months old. They told as at his 6 week check up appoints that he would never crawl or walk, is almost certainly cortically blind, will not talk or interact with us emotionally. Basically, that was it. How he was at 6 weeks was likely how he'd be from then on. Now, 10 weeks later he can sit up well (with help) hold his head up, stand on his feet, GURGLE!, and has just started to touch (by that I mean hit & pull) his toys. Thankfully, due to the initial doom and gloom prognosis, they sorted a LOT of help for us. He has had physio from 10 weeks which I'm sure accounts for his massive development over the last few weeks - and his sheer bloody-mindedness, of course. There is a major problem with his eyesight (waiting for tests in Jan) and he is behind developmentally, but NOTHING like they said he would be. He is also (perhaps) suffering from epilepsy. Not sure as yet, they don't know if his myoclonics are 'just' a result of his brain damage, or the start of something more serious. No infantile spasms as yet, tho his brain damage means he is 50/50 for epilepsy. Watching and waiting a complete PITA but, every little milestone is a joyous one. No other parent could understand the thrill of seeing their baby open their tight little fist totouch something (just for a second, then its back to a fist ). He has just started to touch my face when I hold him. Wonderful.

[manc1]

saintvicksta, my dd is under st davids already and they are fantastic my hubby is running cardiff half marathon in a couple of weeks to raise some money for them. I am on facebook but piccie taken when just had dd. C&Jmum my dd bday is march 1st 2007 how freaky. Her prognosis was horrendous and when we saw the neurologist for the first time he was amazed and said afetr reading her notes then seeing her he didn't think it was the same child. She is surpassing all their expectations and is changing daily, it's really amazing how their brains develop and only just getting to grips that children are never gonna be an exact science!!!

[pipintroll]

Saintvicsta what a lovely name you have for your little boy.

It sounds as if he is doing absolutely brilliantly!

The doctors never gave us any expectations as to what my ds may or may not do.

Consequently everything little thing he does do is HUGE to us.

He has just learnt to clap. I am so excited as usually his little hands are clenched into tight fists.

Always looks as if he is about to wallop someone, bless him!

Maybe the docs paint a worse case scenario and anything above that is a real bonus.

Definitely is to me.

Lovely to hear your lo is making progress.

[Peachy]

Hello

I am mum to 4, 2 with sn. All boys.

I'm very near you . Caerleon.

If you want o cat me I will e-mail you.

It can be very lonely this sn thing can't it? My sn duo are at school (youst is 6 months) and I feel te odd one out vey strongly.

Maybe you, I and Vicsta can meet up for coffee one day or someting?

[manc1]

would love to! When and where?

[saintvicsta]

Hello Peachy & Manc1, (and anyone else not local)
Had a horrendous day at hosp today. Not the appointment, that went well. Gabe's EEG (3rd one) showed as normal again, no sign of epilepsy at the mo (tentative ). Gabe is getting better physically (I knew that but neuro confirmed) was V impressed with his standing and is handling much better, much less tightness in muscles and fists lest fisty IYKWIM. Anyhoo, left house at 2.30 as had to get the bus. Got to hosp 3.20ish, seen about 4.10 (not bad as appt was 3.45) Left hosp about 4.45 only to find some selfish twunt was threatening to jump off the multistorey car park roof. No buses in and no cars out. Finally got in at 6.45. Thankfully I had taken a spare feed with me as these clinics are notoriously crap time wise. I ask you! Poor boy fast asleep now - I'm bloody exhausted too. Has his jabs tomorrow, then back to the hellhole again on Friday. So' can I have a valium to go with that coffee? Manc1 do you see a neuro at St Davids? They want to see Gabe every month for at least a year and I was so hopeful that I wouldn't have to go there anymore. It's like a feckin zoo. St.Davids is lovely. Only been once for initial appointment with comm paed Dr. Norton - she is so very nice . She sent lots of refferals off for OT, portage etc. Pipintroll aw shucks, thanks. Everyone loves his name, tho I fear I have started a trend as there a little Gabriels springing up everywhere now. Can't wait till Gabe claps his hands, we make do with clapping his feet for now! (It is part of his physio I hasten to add) Peachy how's school? You've been having a tough time, I do hope it's getting better.

[saintvicsta]

P.S. Don't have CAT, can email me [email protected]. Or, if your very brave, you could search me out on facebook, tho I am very well hidden. Have lots of photos and vids of the boy on there tho!

[SaintRiven]

am in Bristol if you fancy a longer trip. dd has severe cerebral palsy.

[saintvicsta]

Haven't forgotten you RIVEN, will definitely make the trip over. Gabe goes back into hosp at the end of the month for an 8 hour fast to see if he can maintain his blood sugar. I am very hopeful that he will, and then we can relax his feeding regime (every 4 hrs strictly, at mo) and let him demand feed. If all goes as planned, I will be in touch. I know it doesn't sound that bad, but it is a hassle fitting life in around his feeds and shifting them around 1/4 hr at a time to fit with his next appointment. I really shouldn't complain about that, I know. It's nothing, but life would be easier without it.

[saintvicsta]

If you'll have me, of course!

[SaintRiven]

you might have to bring cake. I let in anyone who has cake
That Peachy dint bring cake though

[saintvicsta]

Can definitely do cake. May even make it myself!