Pregnancy and social work

Nuala1284

Hi guys

I'm 29 and have spastic diplegia and partial sight. I also have well-controlled epilepsy. My non-disabled boyfriend and I are keen to have a baby. I have co-ordination, balance and visual issues, and I'm very worried that social work may take the baby away. This has worried me for years, and now that babies are more likely it's bothering me. Can anyone help?

Blue Frog

Hi Nuala, I didn't want to read and not answer your post, but hopefully someone who knows more will come along soon.

In my experience of working with families, removing children is the very last thing social workers want to do. They do all they can to help kids stay at home, and look at what support they can offer to help people look after their children. There isn't any reason from what you have said that makes it look as if you couldn't be a brilliant mum.

Alison Lapper has an excellent auto-biography which talks a lot about her experience of having her son, Parys, and there have been a few documentaries about them on TV too.

Alex

Hi @Nuala1284, welcome to the site.

We've had a few mums with cerebral palsy post on our Facebook page before, so I've messaged them and asked if they would come and share their experiences here with you.

Your question also reminded me of a documentary a couple of years ago with Laurence Clark, when he was expecting his second child. Well worth a watch:

http://youtu.be/wSn3r0_VpsE

Nuala1284

Thanks guys - that's really helpful. It would be good to speak to any mums out there.

Trix

Hi Nuala

Alex just messaged me about your post, I am 32 and a single mum of an amazing 10 year old (Ok I may be biased) and have cerebral palsy (all 4 limbs) and seizures. I too have balance and co-ordination issues as well as tiring very easily and days where my speech is almost incoherent. I remember feeling absolutely terrified when pregnant for much the same reasons as you, in fact as much as I am ashamed to admit it now I did not bond at all with my baby until he was placed in my arms,, the first time I let myself feel happy, excited and just a feeling of pure love. I only wish there had been a video like the one Paul has shared above to reassure me.

I am not going to lie and pretend it has been easy, there have been many bumps in the road, but we have so far made it through all of them and the most important thing is the bond my son and I have.

When I was pregnant I took the initiative and contacted social workers, I am not going to pretend they all had a great attitude but I was fortunate enough to meet one who was rooting for me. All social workers need is for a child to be safe, loved and happy, as long as the childs needs are met there is no need for concern on their part and I guess instead of being scared of them from the stories you read and hear, you can try and make them your allies, a source of support if and when needed.

I hope this helps a little I could type for days about my experiences as a parent so far, but I wanted to hopefully reassure you a bit that you are from alone experiencing nervous feelings and any advice or support I can offer I would be glad to.

Best wishes and lots of luck

Nuala1284

Thanks Trix - that's very helpful. I have three dodgy limbs, balance and co-ordination issues and seizures, though most of them are little (I wasn't diagnosed until last year because most are minimal and although I knew what they felt like I didn't know they were epilepsy. I'm on tablets now, so they're well controlled. I understand the tablets make birth defects 2% more likely, but I think the seizures are probably more of an issue. Speech is ok but I'm partially sighted. I don't think of myself as severely disabled but sometimes social workers disagree. I'm scared of the practicalities - for instance I look at people with their babies on their hips and think how? I always need to hold on to something to balance myself. That is just one of many small practical worries. Also I'm not sure how my body will get on with being pregnant - I can walk but I think late pregnancy will probably knock my balance and not be great for my joints. I know this is a personal question, but did you have a Caesarean or give birth vaginally? I'd like to give birth naturally but I don't know if I can do that, and if the Caesarean is safer for the baby that's a no-brainer. The baby will be very very loved though, and I couldn't have a better partner with whom to do this. I'm definitely keen to have a baby but there are lots and lots of practical uncertainties. I did ask a midwife and she said it was unlikely social work would want to remove the baby - hope so. Sorry if this post is all a bit of a guddle.

Trix

Hi Nuala

I was taking anti epileptic medications (Epilim) when pregnant. My pregnancy wasn't planned but on medical advice I took high dose folic acid to counteract any risk from the medications. As I am not medically trained and can only advise from my own experience my advice would be to chat to your gp and neurologist about the risks medication wise, is it safe to reduce your medications/ change them to something else.My local maternity hospital has a specialist clinic where neurologists, consultants and midwifes were all there, those appointments used to be so daunting and terrify me but with hindsight we had the best possible care. Having medical professionals as allies as prepared to have honest conversations about the risks/ benefits to you and baby would in my opinion be your best first step. Knowing all the facts means you can make an informed decision and also explain your decisions (if needed) to social workers. It shows you are taking this seriously, going into it with your eyes open and acting responsibly.

I managed a natural birth, but please remember the important thing is that you and baby are safe, don't put pressure on yourself for the 'perfect' labour as many mums who have no health worries or disability need a caesarean, it isn't failure it is the best decision for yours and baby's safety. Did you watch the video Paul posted? If not I would say it worth a look. There was also an episode of one born every minute with a lady who had cp.

As for handling baby, caring for baby, you know what feels safe and what doesn't and are the best judge of your capabilities. I managed after being a little creative to find my own way to do most things. My son was a wee monkey who was far too fast at doing everything and caught me off guard rolling from one side of the room to the other at 4 and a half months and walking by 8 months. It was always a case of safety first. Things like stair gates on the door to my kitchen and bathroom, a playpen - for if i had warning of a seizure. Cupboard locks etc. I also had a high chair with wheels, I breastfed so I didn't have to worry about making and heating up bottles when tired and had his cot pulled up to my bed so I could lift him while still sitting.

I also have a fall detector, a watch round my wrist with a movement sensor that will trigger a community alarm and get us help if i fall. By 15 months my son was able to trigger that alarm if he needed too and by 3 he was able to unlock the door, call 999 and was aware of my infrequent seizures (we used to call them jellies). One of the many challenges I found was finding baby equipment I could use, so things like a one handed fold pram, one handed dropside cot were a lifeline. When you are ready go to a baby store and try things out, learn what you are able to manage and what you might need help with. If you do need something adapted that isn't already on the market, there is a charity, I think REMAP who could probably help. The other area of expertise that might help is a chat with an occupational therapist.

My biggest tip to you would be I guess, relax! All new parents are in the same boat but to minimise disability related issues think ahead and be as prepared as you can be. If possible have drs and social workers on your side so your energy is focused on your new life with baby and not fighting unnecessary battles. Feel free to ask anything, will help all that I can

Nuala1284

Dear Trix

Thanks very much. When I was diagnosed with epilepsy last year one of the first things I asked was about pregnancy. So I know that my epilepsy clinic have a motherhood programme for people who are making plans. It sounds like it would be a good idea to talk to them before pregnancy. I understand that people with epilepsy sometimes have slightly lower fertility but I think (hope) that that doesn't apply to me. I would if possible like to have a natural birth but if an elective Caesarean is safest for baby that's what I'll do. I'll check with the professionals I'm a bit anxious about delivery as my mother believes that if she'd had a Caesarean I wouldn't have had cp. I'm really not sure if that's true, especially as I was eight weeks early, and it doesn't help to dwell on it, but I do understand that things can go wrong, though they often don't. So if I'm advised to have a Caesarean I'll do that. On a basic level I don't care about the details so long as we're both ok.

I've noticed that there are quite a lot of gadgets that could make life easier if you know where to look so I will have a look round once I'm a bit further along. I would really like to breastfeed if possible - it's good for baby and I think that would actually be easier for me than heating bottles. Apparently you have to be monitored if you breastfeed on AEDs but that's ok - I can switch to bottles if necessary.

It does seem like a huge enterprise, but I think you're right that if we plan and talk to doctors/professionals in advance that should help. And also try to be open to them, rather than scared of them. I have met some fantastically helpful doctors/professionals so it isn't always a battle.

sweetestmoondust

Hi please remember there is no word such as can't. Make plans for yourself and contingasy plans to help you around your home like a gardener, cleaner. I have cp diapligic but mildly and I do most of the things around the house but the kids are helpful now they are 7. But I had help through the early years with homestart the charity if they are still going get self feferal to get some help if possible

Again remember there is no such thing as can't

Best of luck

Lizzie

Nuala1284

Thanks Lizzie. Are Homestart England and Wales, or the whole country?

Nuala1284

Thanks Alex - the documentary is very helpful.

Nuala1284

They are everywhere - and they sound really helpful. I am going to email North Glasgow and see what they say.

TANYAFIELDING

As a mum of 2. Kids are hard work but you will be surprised by what you can achieve for your child. You will call upon strengths you never knew you had and it will all be worth it. Don't be frightened of social services they are there to help you look after your child with support not to take him/her away. Go for it. Your child loves you for who you are and doesn't even see your disability as they have grown up with it. In your child's eyes you are the normal one. I have to remind mine that there are some things I can't do! The most important thing they need is love.