Disabled parents

[ClaireL90]

Hi there,
I do not currently have any children- I am thinking of doing all that in a couple of years. However I have cerebral palsy (right sided). For those who don't know what it is it's basically like having a stroke. So, I have poor balance, limited use of my right arm and hand and a limp. I take meds for the pain and stiffness. I just wondered if there was anyone like myself on this group with some encouraging stories.

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Hi Claire

I'm Jo. I have spastic diplegia CP affecting my left side.

My daughter is three months old.

I am always happy to talk should you need anyone. Was honestly beginning to feel like I'm the only disabled person to have considered babies.

Can you walk at all? I can walk unaided, very much on the fence betweend disabled and able bodied it seemed and this really affected my antenatal care. No one seemed to want to listen to my concerns about my body. I was cajoled into agreeing a natural birth even though no doctor I saw would say whether they'd had experience with CP.

Pregnancy itself made all my aches and pains worse and I was offered an induction at 38 weeks. It failed... and I refused to have my waters broken because I feared my daughter wouldn't engage with my pelvis. I asked repeatedly for a c section. It was a fiasco and I wish I'd screamed for what I wanted. I wish even more I could have forced my doctors to admit they had no experience of CP.

As it was, I was right, my pelvis is too narrow and my daughter and any future babies have to be born by c section.

Caring for my daughter is hard. It's hard to carry her weight. I reached out to Scope but they have absolutely no provision for disabled parents. Social services haven't even answered the phone so I can ask for an OT assessment. It's a lonely journey. The only organisation I've found that sounds helpful is REMAP - volunteers who adapt equipment. I've asked to have a sling sewn into a top so I can carry her at night without worrying about straps.

I dress her in mainly zip up onesies and lift her in the middle like a stork. She is very adaptive and has held up her head from 3 weeks. She has begun asking to be picked up by pulling on her onesie as we do.

It's tiring and I plan to ask for acupuncture and hydrotherapy to mange the aches.

I'm keeping a blog of my life as a mum under my username as I don't think disabled parents should feel so alone.

And for all the negativity of my reply, rest assured my daughter is the light of my life and my biggest achievement.

Be willing to shout and be stubborn. But know that your baby needs and loves you for you and will adapt. Also remember to be kind to yourself. I need a day of rest everytime I go out with the pram and I need regular massage and physio.

Many thanks for your reply sorry you have had issues. I have a weak right hand side much like a stroke patient. I'm hoping to be able to do things through grit and determination and in laws help

Hi, just came on to suggest Home-Start as a supportive charity - they have volunteers who visit families with young kids approx once a week to lend a hand or a listening ear. So it can be someone to do the washing, an extra pair of hands while you're shopping or just someone to chat to, depending on the needs of the family.

Great thanks

Hi DisABLEdmummy,

Can you tell me how I can follow your blog?

I have MD and I feel like many of your struggles will be mine if I am lucky enough to have a baby (currently undergoing IVF) x

Hey.
I think with any child it's important to have a supportive network of people to help out, even more so when you have medical problems.
I have an 18 month old baby, I have various problems that cause severe pain and fatigue, and without a lot of support from my ds dad and my family I would not have managed. They allow me to have rest periods, but support me in being a mum when I do have ds, and not take over. It's hard to allow others to look after ds but while he is with other people I know he is safe but ultimately having fun. He will come back tired after having fun and we have lots of snuggling. We do low energy activities such as messy play, tv, books etc together and have so much fun.
I feel vulnerable when out the house on my own with ds as I know tantrums will be coming soon, and physically I not sure how I will manage those. But children also adapt amazingly to people's limitations and work around them.
I wasn't honest with myself about my limitations before ds was born, and have been fortunate to have been able to rely on others to help out.
Would I have done it knowing how hard it is, yes if I could guarantee such an easy baby as ds and know I have others to help. I wouldn't have if it was just me and the dad. The pregnancy was horrendous and I wouldn't go through that again. So just the one baby for me. Do I think I was selfish to want a baby so much, Probably, but I make sure he doesn't miss out on the things I can't do.
Sorry to ramble.
There isn't much help out there for disabled parents. Maybe a chat to your local social services, children services and cab for a fuller picture of help available.