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Finding Little Stars – a group for children with additional needs

7 November 2024
This article contains subjects that might be triggering for some people
Children & Families Special Educational Needs & Disabilities
Story

Sarah has faced every parent’s nightmare, the prospect of losing her little girl and never hearing her laugh again. Here she explains how meeting other families at the Little Stars group for children with additional needs helped through a traumatic time, and what it means to hear her daughter laugh again.  

My little girl was born with a neurological condition called Dandy Walker syndrome. She also has Hydrocephalus, which is a build-up of fluid in the brain. The excess fluid puts pressure on the brain, which can damage it and, if left untreated, it can be fatal. On the day we found out she had Dandy Walker syndrome I felt so numb and distraught, as the professionals were suggesting that we terminate the pregnancy. But I’d already fallen in love with my baby.   

Although we were warned that they didn’t think she would survive being born she came out fighting. I was so nervous but on the actual day, when I was going to give birth to her by C-section, I was so calm… I just knew she was going to be ok, and she was.   

After she was born, we were told that she wouldn’t be able to do anything for herself and would have to go on a waiting list for a shunt operation because of the buildup of fluid on her brain. But for the first 14 months she had a good life. She attended baby groups, and she was just an amazing, happy child.  

When we finally went in for the shunt operation after a 14 month wait, well… everything went wrong from that point. 

Sarah, mum

Going into surgery we were told that, although it was brain surgery, it was straightforward, and she would be out soon – so it was dreadful when everything that could go wrong did.  She had a cardiac arrest during the procedure and had to spend a further three months in hospital because of complications with a haematoma and epilepsy.  

She was having 100 seizures a day and I don’t know how we got through it… I still have PTSD (post-traumatic stress disorder) because of that, but we just had to adapt. It was the worst thing I’ve ever been through, and we didn’t know that she would ever pull through… We nearly lost her.  

 

Would I ever see her smile again?

What was equally difficult was that she went in one way and came out a different child.  

She wasn’t able to do the things she was able to do before, and she didn’t laugh for months… She had always been such a happy little girl. I used to think “will I ever see her smile again?”, and the thought of never seeing that beautiful smile killed me inside.  

She’s going to be ok 

And then, a few months after she’d been out of hospital, we were just doing nothing in particular and she started laughing just the way she used to laugh, and I thought “She’s going to be ok… She’s going to be absolutely ok”.   

It was quite difficult to get her into nursery because she has additional needs and after the surgery she couldn’t sit up.  Although we’d attended baby groups when she was younger, I didn’t want to take her to a group where the other kids were walking because I was sensitive about the fact she couldn’t do the things they did.   

It made me sad, but I tried to stay positive and think about what she can do. I didn’t want my daughter to miss out on anything in life, and I still want her to have the same opportunities as any other child.   

It was our portage worker who told me that Family Action were starting up Little Stars, a group for children with additional needs. We jumped at the chance because at that point we still didn’t have a nursery place… it just came at the perfect time.   

I really looked forward to attending the Little Stars group as I wanted to be around other parents who were going through the same thing as me and I wanted her to be around other children too. 

Meeting other families at the Little Stars group for children with additional needs

It’s always good for parents who are in the same boat to have a conversation. I realised I have quite a lot of experience because of having my daughter, and I was able to share some equipment she had grown out of.  

I think that due to my experiences I’ve become more compassionate. It’s good to help people who are brand new to this as I know I could have done with that information, and doing so makes me realise how far I’ve come.  

Some days are still hard and then she’ll learn something new, like doing the actions for a nursery rhyme she’s learnt, and it amazes me. She is thriving, and makes me proud every day.

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Getting the right support to help meet the needs of your children is not always easy. For those with special educational needs or disabilities, it can be even harder.  A donation from you today will help families like Sarah’s find the support they need to thrive.

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