“It’s a battle to get her to do half an hour of physio, but she’ll do two hours of gymnastics.”

Melissa’s mum Jennifer offers her advice on the difficult early years, why you should always be prepared for surprises, and why confidence is probably the greatest improvement to come out of therapy.

“The best advice I got from one therapist was;  “We don’t know how this child is going to turn out”. It all depends on how much input they get and how they respond. The most annoying thing is that you desperately want to know how your child will turn out. However, as hard as it is, it is absolutely the best way. Just do as much as you can for your child and they will surprise you.

Melissa is kind of wobbly, she has athetoid cerebral palsy, she’s not well co-ordinated, and her balance isn’t good. But she does make herself understood. She does walk, and she does career around like a madwoman, especially if there’s a soft gym mat under her.

Advice to other parents

It is a very scary thing when you’re diagnosed but actually it’s just a different world. It’s not as bad as you might think. When Melissa was younger I’d think parents were looking at me feeling sorry for me because I had a child who was different, but there’s a lot of worse things in the world than CP and Melissa can’t imagine life without it because it’s part of her. You do just get used to things.

Going to nursery

Melissa went to mainstream school from specialist nursery. The staff in the specialist nursery worked so well I was worried about her leaving that environment. Our physio made a request for Bobath therapy in the summer holidays before she started school.

Melissa wasn’t actually walking. Her therapists asked “Can you stand?” “How long can you stand for?” Can you do this?” I think Melissa suddenly thought “Oh I’m doing a lot of things I didn’t think I could do. I think that’s what put the idea into Melissa’s head that she could walk. Two nights into the therapy we were at home and she just said “I’m going to walk” and she did, right across the living room floor. She was ready but she didn’t have the confidence.

Once she was on her feet it made everything so much easier, dressing, going to the loo, and now she can join in with different activities. She always wanted to go to a dance class, once she was on her feet she just pitched in with everybody else and then she started to go to gymnastics and different things like that.

Primary school

Melissa wasn’t continent or walking at four so she did a year in a special primary and started mainstream school a year later.

She has a specialist OT and a physio and they go into school and support the PSA and teachers to keep her on the straight and narrow and provide her with the equipment she needs.

Melissa is a sociable kid and enjoys school. Sometimes she gets left out. She’ll have friends here after school but not always get invited to other people’s houses. The parents who do have her round tend to work in the care sector – they get it. Some parents are scared, they don’t know what to make of Melissa, they worry about not being able to understand her, as it affects her speech. That’s quite difficult.

After school activities

Melissa does canoeing, gymnastics, drama and dancing. She doesn’t get wrapped in cotton wool at home. I don’t think she is ever that keen on structured therapy. It’s a battle to get her to do half an hour of physio, but she’ll do two hours of gymnastics on a Saturday and hates to miss that.

Kerry is mum to Cooper and Lewis, two gorgeous boys called who are three years old, and who keep her very busy. Cooper has Hydrocephalus and cerebral palsy.

“When the boys were babies we didn’t really notice. But there comes a point when the differences become obvious. Ours was at 16 months old when Lucas was walking and Cooper was still lying on the ground. I found that really upsetting because I was comparing them.

“I know it’s difficult to do, but you have to try not to compare them and just focus on how brilliant they are together.

“It is easier as they get older. You begin to see more and more of their personality emerging. Cooper is the one who loves being funny. He loves singing, loves stories and loves swimming.

“They are just different boys, like any other brothers.”

“He is becoming a lot more aware of the fact he is different. It can be difficult to answer these questions but I just try to answer him honestly and explain that everyone is different in some way.”

Elaine shares her family’s story of diagnosis and life with twin boys, Ryan and Jack, who has cerebral palsy.

“Jack is one of twins. They were supposed to be born by elective section however they decided to come early and I had natural births at 30 weeks plus four days. The boys were born 14 minutes apart, Jack was 3lbs 3ozs and Ryan was 3lbs 6 ozs. They were transferred immediately to the neonatal intensive care unit (NICU) and I had to learn to do everything through the incubator for those first weeks which was really strange.

“On day three, doctors told us that Ryan’s brain scan was fine but that Jack’s had some pinpoint holes which meant there was brain damage. At that point we hadn’t even known that they had brain scans done! It was such an emotional rollercoaster and it didn’t help that the boys were in different wards, as Ryan had to remain in the NICU for breathing problems but Jack had moved to special care.

“Cerebral palsy was not mentioned at that point and I really struggled with the lack of information about what to expect over the next few years. They only thing we were told was to look out for differences in development between Jack and Ryan.

“The boys were transferred to a hospital closer to home after 10 days. Ryan took Group B Strep and nearly died three times. We owe his life to his consultant who was amazing with him. The boys eventually got out of hospital on their original due date. After discharge they returned regularly to the development clinic where they saw their consultant and two physiotherapists who monitored their progress.

Early development

“At one year old Jack’s care was transferred to an NHS community care centre.  He continued to progress but I felt at times that I did a lot of the hard work and that the therapists could be a bit negative about Jack’s potential. I was told he would never sit up; but two weeks later he was sitting. Two weeks after that he started to commando crawl. It is his left side that is affected. Sometimes he sat at a funny angle and would forget to use his arm, but he kept improving. When he started to walk he got fitted with a splint on his left leg to help him come down off his toes and this made a big difference.

“At age two, due to boundary changes, Jack’s care was transferred again and he got a new NHS physio who is amazing. She has a fantastic rapport with Jack and she explains so much about his condition and what to expect and she sees Jack every week. Toilet training was  difficult, but the occupational therapist and physio worked with me and Jack to help with technique and aids, such as grab handles close to the toilet.

Primary school and onwards

“Our physiotherapist, occupational therapist and visual impairment support have been so supportive, particularly as Jack moved up to primary school. The school have been great at putting the changes in place which were needed to help him.

“As well as splints, Jack also has a Lycra suit. He started with just a jacket but now has a full body suit to help control his arm and his lower back. He doesn’t always enjoy wearing it but it definitely helps him to remember and use his left side. It also helps with his concentration levels and the school have noticed this too.

“Jack gets pain in his legs, and Ryan offers to massage it “the same way mummy does”, because the physio showed me how massage can help. Jack also gets his CPIPs measurements carried out every year to monitor his hips.

“Jack has had Botox for his calf muscles which worked really well the second time around. There was a possibility he might have needed it in his thumb but so far the Lycra suit is working well to improve this. It’s good to have regular reviews and NHS staff who can help us to decide when some things are needed.

The future

“I feel that early on I would have benefitted from having more information available. If I had been told all the options and what we might be facing over the following years it might have helped to calm me down. My advice to anyone facing diagnosis would be to keep calm and talk about what is going on with close family and friends. We didn’t do that to start with. But bottling it up doesn’t help.

“Having local NHS services like the physio and occupational therapist, and the visual impairment teacher at school takes a weight off my mind because they help me to think outside the box with Jack’s treatment. They provide a support network and access to information. The occupational therapist also suggested the HemiHelp group which provides a network with other parents for sharing information and I find this really useful.

“Jack is now starting to question why he is different and whether he will get cerebral palsy in his right side too. He is becoming a lot more aware of the fact he is different. It can be difficult to answer these questions but I just try to answer him honestly and explain that everyone is different in some way – and he certainly doesn’t let it hold him back. Everything he has done he has done his way. He has learned to adapt to being that wee bit different and nobody would know walking past us in the street that he has cerebral palsy.”

“Dylan’s using parts of his brain that others might not use, he’s finding other ways.”

Dylan’s mum Susan shares her family’s experience of diagnosis. She compares what she was told about Dylan’s future then, with his life as a healthy 6 year old now.

I had a normal pregnancy, but 12 hours after Dylan was born he was rushed down to the neo-natal unit and we were told there had been a large bleed on his brain. Dylan was diagnosed with Hydrocephalus and we spent the following weeks in different hospitals.

The neo-natal team and all the paediatricians were amazing but the initial picture they painted was very black.  Some consultants told us to expect very little from Dylan whilst others said that you can never tell what the future will hold.

When Dylan was six months old the neurologist mentioned cerebral palsy. He said they wouldn’t be able to diagnose Dylan officially until he was closer to two in case there were any other underlying conditions, which had to be ruled out.

Now aged six my little boy walks, talks and loves sport and music – he’s nothing like the boy everyone expected him to be. He has totally exceeded expectations. He is amazing! There are some things he doesn’t get, and physically he still struggles with a lot of things. There was a delay in meeting most of his milestones but the important things is to try not to compare with other children if you can. With CP, the best thing you can do is stay positive while also being realistic.

The thing I really held on to was when a neurosurgeon told us that a child’s brain was adaptable. They explained that maybe that part of the brain will be reading or numbers for someone else, but Dylan’s brain will find a different pathway. Sometimes you can almost see another connection being made.

I remember coming back from a week’s therapy at Cerebral Palsy Scotland. Dylan had been concentrating on improving Gross Motor Skills, yet when we came home his writing just seemed to click into place. He came home and drew his first picture of a person.  The large movements definitely help him to progress, but often in ways that you wouldn’t always expect.

It might feel like you are constantly battling to find out things and this can be really hard. A lot of the time there are so many people involved, that perhaps everyone assumes someone else is giving you the information. You find a lot of things out by chance. It’s about learning to ask the right questions – and keep asking them. I know many people still shy away from social media but being on Facebook opens lots of doors to support and finding out about activities that are going on around you.

My advice to any parent is to look for local support. As soon as you speak to other parents who are going through similar things as you, particularly at the point of diagnosis, you won’t feel so alone.  Look out for activities and events your child can take part in. Even if you think they might not manage – give things a try – they will always surprise you.  It can be difficult because sometimes you just want to be a parent, not a physiotherapist or occupational therapist, but that’s just the way it is and the more you get involved with all these things the more you learn and can help your child.

Keep asking questions and remember that it’s ok to ask for help from charities and specialist organisations if it’s going to be the best thing for your child.

“The therapists did things I hadn’t even thought about to help Cooper get ready for nursery.”

Cooper’s mum Kerrie shares her family’s journey as a mum of twins to two raspberry blowing cheeky boys, one of whom has cerebral palsy.

“The twins were born at 37 weeks + 5, so not that early. Cooper was born first at 4lbs and 14oz, but then Lucas was born 2 minutes later and he was 7lbs and 9oz. Everything seemed fine, we were back on the ward for a few hours and then one of the nurses noticed that Cooper was very sleepy. He went to neonatal for the night where he became very poorly having a seizure and grade 4 bleed on the brain. The neurologists said he had Hydrocephalus and would probably be severely disabled.

At seven months old he had a shunt put in his brain to remove a build up of brain fluid. As soon as he got it he was a different baby, he was trying to use his hands and doing things he’d never done before. Cooper is weaker on his right hand side and even at that age his hand was tight and into his chest. He was diagnosed about a year later with quadriplegic cerebral palsy.

Cooper was seeing the NHS physio for one hour every three weeks and I felt I wanted more for him. I looked into the Craighalbert Centre in Cumbernauld and Cerebral Palsy Scotland. Craighalbert do an early intervention programme and he goes there for and hour and a half every week. It’s been brilliant.

Cooper has also been coming for therapy sessions to Cerebral Palsy Scotland. I love the way it’s an hour with two therapists focused just on him and his needs. Everyone is so nice and friendly. Cooper’s disability is only physical. He’ll blow raspberries if you encourage him he’s so cheeky, and he loves chatting away with everyone, having a carry-on and being with other kids. He can’t sit unaided yet, but he’s only just three and manages to get around. When he’s lying on his tummy his right hand is always tucked under his belly. We’re trying to build up strength in this arm because his legs are ready to go.

The therapists did things I hadn’t even thought about to help Cooper get ready for nursery. Using little physio benches they’d sit behind him and help him take his shoes off, holding his leg up and reaching over to take the Velcro off his shoes, then helping him take his splints off and get onto his knees and onto the floor so he’s ready to play. It was great to get that focused time, it’s improved his confidence. They also let him choose his activities using a board, we hadn’t done that much and now we do it at home. Asking Cooper what he wants to do has given him a bit more independence.”

You can follow Cooper’s progress on his Facebook page.