Disabled baby

[FridayNext]

We have a 4 month old severly disabled baby and are finding it very difficult to cope, in particular with how things will be for him when he grows up. He has Cerebal Palsey, which affects his movement, hearing and sight problems and learning difficulties.

Is anyone else in a similar situation? Any tips on how to cope? At the moment all we seem to get is more bad new!

[feelingbetter]

Hello & Welcome
My DS is now 14 months old. He has severe brain damage and currently labelled under the large umbrella of GDD, which I exppect to turn into a CP diagnosis at some point.
He has sever visual impairment and epilepsy. He had infantile spasms at 5 months and has just been diagnosed with another horrible epilepsy syndrome, Lennox Gastaut.

He is an absolute delight. Funny and engaging and very spoilt.

The early months are horrible. It waas the same for us, more bad news at every appointment. They told us he would never smile, walk, talk - basically as he was at 6 weeks old, was how it'd be. Everyone on here told me to wait and see and nobody knew what he would do. I wish I had believed them, coz he is a wonderful smiler, has a naughty laugh, can roll over and use his hands well. He loves to weight bear and 'stand' and 'jump' on Mum & Dad. He eats solid food and is showing all the right signs for crawling at some point.

Wish I could tell you how to cope, not sure really, but you do. Enjoy your Son. Throw away all milestone guides and let him do whatever he can whenever he can. Celebrate every little step forward as the massive acheivement that it is.
It helped me to take control, getting eferrals to physio and OT & Portage and basically learning what was available and how to get it.

It does get easier as you get to know all these new people who will be involved in your family life.

I learnt much more from everyone on this board than I did in real life, so post here. There'll always be someone to help x

[madwomanintheattic]

aw, feelingbetter, he sounds like he's doing so well! i think i remember your early posts (i used to post as romy7 then i think...) but it is so true - there is just no way to second-guess how our kids will develop! dd2 was just about sitting at that point, and i looked at some pics of her first birthday a couple of weeks ago when we were packing house to move - i so remember where you are now, and know how far dd2 has come since!

fridaynext - it's such a waiting game - as feelingbetter says, you just have to take one day/week/month/ year at a time, and see what happens - no crystal balls provided. but there are loads of us on here that have been through the baby mill not knowing where we'll end up, and are always around to listen when you need to talk to someone who gets it... dd2 was discharged from scbu at 5 weeks with full follow up from slt/ physio etc - do you have everything you need in place or are you still waiting for referrals? (dd2 has cp - originally dx spastic quad, but re-dx athetoid at 4 - she started out really tight, hence spastic dx, but is now low-tone/ fluctuating tone, with a bit of intention tightening...)

[mumgoingcrazy]

It just blows your mind trying to get your head around everything. Feelingbetter and madwoman has already put it brilliantly. What I would say though is keep posting here. The ladies on this board have helped me come to terms with having a sn child, helped me understand the condition, or point me in the direction of websites or books to help me. Also, they have helped me with what benefits I am entitled to and how to get them. Lastly, they have told me what therapies DD2 needs and how to get those as well. I've learnt more from the mums on this board than any of the (many) professionals we see. Keep posting and remember you are most definately not alone.xx

[2shoes]

I remember felling greif when I found out dd had cp, took me years to find out this was normal.,(dd is 14 and has cp)
where are you in the country?

[meltedmarsbars]

2shoes, I'm sure it is a form of grief, and can take a long time to sort through, especially as you are so busy just coping with the day-to-day stuff, theres no time to just think things through.

Friday, try to keep talking to your dp and family and friends, they are your real life support network, but there is lots of good advice on here.

[FridayNext]

Thanks for your messages. It's good to know that all doctor's predictions don't necessarily come true.

I'm not up with some of the abbreviations i.e. DS, dd2 etc

We live in Peterborough. The NHS have been really helpful and offered different support, but it's still hard dealing with things on a day to day basis.

I've been taking him to different 'Mother and baby' groups, but it's hard when all the other babies are fine and doing things that our son can't. Also when the first question you get is 'What's wrong with him?'. I've been asking about support groups in the area but there doesn't seem to be any.

[DJAngel]

We have dd2 who's 3 and has Tuberous Sclerosis, with learning disability and epilepsy ( due to multiple brain tumours )
I have memories of those early months of infantile spasms and the diagnosis at 2 years old. It's a tough time and I think taking it a day at a time is good advice. I got a lot of support from a fab health visitor who sadly left but she referred me for some counselling which was very supportive and helpful. I also found myself increasingly talking on here and on other websites for support. Now I've begun to meet other real life (RL) parents with SN kids I've found that really helpful too. I couldn't deal with the groups, or even my sister in laws baby the same age who was so advanced in everything, I couldn't spend any time with them. It's easier now but I felt it was like a kind of bereavement and the grief was very tangible. It comes in waves, and there's a lot of worry with the grief for me but somehow you just carry on..

And funny unexpected bits of joy - or support or progress or a great health professional saying something significant etc can get you through the days..

Take care of yourselves and each other and know that you can always post and realise other people know exactly what you are experiencing. I've found that so helpful.

[badkitty]

Hi, I have an 8 month old with cerebral palsy - not sure I have much advice as still going through all the emotions - grief, guilt, disbelief etc, myself - but it helps to know you are not alone. I have had to completely stop going to any mother and baby groups or meeting up with people from the NCT as can't bear to see all their healthy babies developing and achieving milestones so easily. Just hoping that one day it will get a bit easier.

[Lauree]

Hello, Friday, and welcome...
I've found plenty of people on this board with similar experiences: It does help me to know there are others out there. FWIW doctors told me 'don't be surprised if he never sits up' when we left the hospital after my son was born, and now he's running around and going to mainstream primary school with a (learning support assistant). Get all the help you can, the portage service was particularly helpful to both my son, and my own confidence.

Best wishes to you all

[Woooozle100]

Agree you go through grief

Don't be hard on yrself. If you feel a bit overwhelmed by yr thoughts / emotions at times, I think that's perfectly natural. Feelings change, pass, will become more managable in time, become replaced or shadowed by better memories and experiences

4 months is no time at all really. Don't think you can begin to process / reflect anything in that short space of time

For me, it was like a train crash of different thoughts and emotions. I was happy that my dd survived the various complications, but then at times I doubted whether this was for the best

Sometimes I felt really resentful that I had no 'normal' time with my baby - like any semblence of what I had expected was snatched away (dd was my first as well) It was all hospitals, drama, worry.. I wished I had even a few weeks when I could have been blissful or at least unaware of all of this.

However, knowing early on also gave us access to early intervention. That's all been good for dd

Most of the time now I find my dd delightful. I'm so proud of every little thing she does. I see the positives and revel in her achievements - however small they may seem to others. As a family, we are very happy and life is generally good. I try not to think too far into the future as it is unknown and rather scary.

One of my favourite quotes I remember from A levels (!) be a child o'the'times.. possess it Er prob got it wrong but hey ho, am endevouring to live by it a bit more

Oh and hello and welcome!

[donkeyderby]

Hi, it's just the worst time isn't it, a real sledgehammer blow to your life. I hope you find some other parents in the same boat - in our area, some mums set up a special needs baby/toddler group because they couldn't bear mainstream groups, and the spin off has been that there are lots of informed, active parent-carers in our city who support and understand each other. I have found that the best services have usually been started by parents. If you get the energy, I would recommend trying to start something up if you can't find anything.

It does get better and I never thought I'd get to the stage where I enjoy my son, but I do even though he is severely disabled and challenging (he's now 13). I think it opens up your eyes and heart to a whole different world and I now feel it is a total privilege to be part of the disabled world. I love disabled babies - they are my favourite, favourite babies - shame there aren't more around!

One last thing....spend time playing, cuddling and having fun with your baby. I really regret feeling so negative about my son in the early days and it is the one thing I would change if I could.

[FridayNext]

I know what you mean about feeling negative, I don't feel like I've really bonded with my baby at all. Maybe because he was in hospital for his first 10 weeks, and for the first few weeks we couldn't even touch him. Also now it's so hard that he doesn't look at me, or respond to me in any way.

Does anyone know of any support groups for babies / children with special needs in the Peterborough area?

[FridayNext]

Peterborough is in Cambridgeshire

[twinkle1]

Hi
hope you dont mind me crashing in!!! what you have all said rings very true. I have 5 kids but the twins are 14 months and both have lots of issues.Callum has a gastrostomy as he cannot absorb food and iron properly and know one knows why!!! Connor had a kidney removed and a big brain haemmorhage not long after he was born.This has left him with low tone and left sided weakness.Sometimes its soooo overwhellming.I seem to spend all my time at hospitals.
Thanks for letting me have a moan
twinkle

[donkeyderby]

Riven, nice try!
Twinkle, you're not crashing - moan away.

Friday, the process of feeling more bonded was a slow one for me and ds didn't have the sort of medical issues that your son has - he was, however, fairly unresponsive. I just didn't want a disabled baby - it wasn't in my life plan at all and I will admit that there were times when i felt it would have been easier if he'd died. I'm surprised how different I feel about him today. I was told he'd never walk or talk and this has all turned out to be untrue.

Even if he doesn't seem to respond and even if you don't feel like doing it, do keep the cuddling up. You don't know at this stage what he is feeling and needing and it can only help not harm.

[badkitty]

Friday I have also found the whole bonding thing really difficult, with DS being whipped away straight away, then not being able to hold him and him not responding like other babies. He has slowly become more responsive to the point now where he recognises and smiles and coos at me which is lovely. Just try to keep reminding yourself that your DS is just a tiny baby who needs his Mummy as much/more than any other even if he can't show it yet. But I know how hard it is. Is he your only DC?

[anonandlikeit]

Friday, ds2 spent the first 2 months in hospital, with us unable to hold him for the first few weeks.
He is 6 now & I love him dearly, but i do feel differently to him to the way I feel about ds1.
I don't think i love him any less but we do have a very different relationship.
It has grown & evolved, as he has got older our bond has deepened. As a small baby he was unresponsive & as much as I love him & would protect him, there wasn't that automatic mutual love & need that was there with ds1.

Give it time, I don't know your circumstances but I can only guess that you have all been through a traumatic time & need a while to get used to your new normality.

Don't be hard on yourself & remember to take care of yourself too xx

[madwomanintheattic]

friday, we had the no touching thing for the first few weeks too, and then dd2 was very tactile sensitive and spent a lot of her time screaming... but she's 5 now and has spent the afternoon climbing all over me begging to be tickled.
find out where your sn hv is, if you don't know already, and then ask them to put you in touch with any sn mums and tots etc. 'contact a family' might also be able to help you locally - some of the local reps are brilliant.

at 4 months, frankly, i had problems leaving the house except for appointments - most of the therapists came to the house - and i spent a lot of time in tears. but i always always always made sure that i went out on a friday to our local sn group. it was the doorway to a whole new world.