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Family Story – Living with Cerebral Palsy

Family Story - From a family living in South Gloucestershire

Noticing the first signs

There were so many other health issues going on for our son, in his first seven months, that any specific signs would've been just part of what we were already dealing with. Due to the head trauma and subsequent brain surgeries it seemed obvious his development would be delayed and we immersed ourselves in the raft of specialists and therapies. We had decided to focus on any positives rather than get stuck on potential difficulties.

Referral to community health services

Our first meeting with our Consultant came after eight months of hospital admissions and intense therapy. He was the first person to mention cerebral palsy and it came as a shock really as no one else at that point had mentioned it! Having gone to so many other appointments and dealt with various doctors and therapists I'd gone to this appointment on my own with our son. However, I realised I should have gone with someone else to support me as I'd not been prepared for our Consultants comments.

Further involvement and diagnosis

To be honest we maintained our commitment to focus on what our son could do and not allow any limits to be set! We wanted people to meet 'our son' not a list of conditions, so didn't allow any diagnosis to become who he is. Having the involvement from our physio, occupational therapist and speech therapist from four months helped us focus on overcoming any obstacles. The advantage of having had so much involvement from so many health professionals was that when we needed additional support or equipment we were already known to them, and that made the process smoother. We had to work close with the therapists and the partnerships we made were key to seeing our son keep moving on through each challenge.

What happened next?

Our son has continued to 'surprise' his therapists as he has gone beyond their initial expectations. We endeavour to find a way around any obstacles but also want to ensure we don't create a sterile environment. So he's learnt how to negotiate steps, climb ladders onto his trampoline, use the toilet, use the taps, get into the car and this summer we've been practising our dressing skills.

We made the decision to change his school to a specialist one, which has taken another year to realise. The mainstream school he'd been going to did their best but there's still more potential we see for our son, and this move will give him better opportunities to become who he is.

(Story details taken 17/6/14)

Family Story - From a family living in Bristol

Noticing the first signs

She was born six weeks premature. When she was about six months old the Health Visitor suggested that we take her to see someone, because she didn’t seem to be progressing like her brother was at that age. She wasn’t moving around and when she did move, she’d use her head because she couldn’t move anything else. So she had to learn to move the right way, and that was difficult because she went through so many tears and we were in tears with her, but we had to be firm for her future.

Referral to community health services

That was when Physiotherapy came in. She had to learn to make different movements, and try to step up, because of the Cerebral Palsy she couldn’t move her legs, so we had to move her legs which, obviously as a young baby, she didn’t like.  I’d not dwell on what she couldn’t do but more see what she could do, and encourage what she could do and follow that through. This is what I’ve been doing the whole time.

Further involvement

Later she went to Nursery; we were over there for a while. It was open to everyone; you’d see children with disabilities there as well, which she enjoyed. They told her to see a Speech Therapist because she couldn’t seem to talk that well. I could understand her because we had her all the time but other people couldn’t understand her speech. So she went to see a Speech Therapist and I used to take her to a Children’s Centre for check-ups with a Paediatrician every so often.

Then she went to Claremont Special School and was there for one or two years and they did wonders for her. I would recommend them to anybody, they did so much. At Claremont I think there were two Physiotherapists who saw her. And then she went from there to another Primary. They had a Physiotherapy room. I used to get information about what she was doing in Physiotherapy; I got sent home an exercise plan.  She is still seeing a Physiotherapist and a Physiotherapy Technician at her Secondary school.

She stopped seeing the Speech & Language Therapist around two months ago. They thought that she didn’t need it anymore. I think they’ll still keep an eye but she’s progressed so much. I’ve got nothing but praise for them. The Speech & Language Therapist decided that she had come to the level where they can’t do any more. They contacted me and I agreed.  She also stopped seeing the Occupational Therapist recently.  The OT had done everything she could here and provided everything she needed. So really, all her needs had been met at this time.  As she gets older it may change but should that happen, I will re-approach them. She still sees a Paediatrician every year, for a yearly check.

At her Annual Review at the school it’s the Physiotherapist, Head of house, a lady from Connexions, her teacher and us. We talk about her progress and her future. We talk about her and any concerns and then afterwards she comes in for anything she wants to talk about. You get something sent home for you to sign and any comments and then you voice your opinion at the meeting.

What happened next?

I know who to phone if I need something and I felt we had support and if there wasn’t I would speak up because where she’s concerned, her needs are what counts and I make sure those needs are met. I think lots of encouragement got her where she is now. I didn’t do negative, just encouragement.

(Story details taken 6/8/14)

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Family Story - CP SG Transcript

Family Story - CP Transcript