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.

“We were given a Novochat machine on loan, the different in Ciaran’s life in that month was amazing.”

Mum Jacqui shares her family’s experience helping her son Ciaran get ready for his first day at big school.

“Ciaran has spastic quadriplegic cerebral palsy. When he was born the doctors weren’t sure if he would walk. He does walk, loves playing, but he does struggle with his speech. We understand a bit, but we don’t get a lot and he gets very frustrated. As part of his preparation for school we were given a Novochat machine on loan. The difference in Ciaran’s life in that month was amazing. Anything we didn’t understand he could get the machine and bring it over to us.

He loves nursery and does really well, everyone understands him and all the other kids rally around if he needs help. He should use his frame for walking but he’s reluctant to use it because none of the other kids do. We started taking him to Frame Football, where all the kids use one and he’s adapting to it better. It’s great for him to see there are other people out there the same as him and he’s not the only one.

Ciaran doesn’t like change and so the school have arranged for him to have extra settling in sessions every week until he starts in August. His OT and physio have been to the school and are compiling their recommendations. They’ve already spoken to me about wedge cushions for his back and the floor so he can sit comfortably, yet not look different from the other children.

Ciaran comes regularly to Cerebral Palsy Scotland. At the moment, his goals are to work on his balance, posture and speech. Ciaran struggles with his hands, some days he can open them, other days he can’t. At the moment he’s learning to pull his trousers down so he can go to the toilet himself. He’s also learning to drink through a straw. And at home he can now go up the stairs holding onto the bannister. The difference in him is amazing.

I used to have to help him around the soft play. Four weeks after his therapy he held his hand up and told me he was going around on his own. It’s given him confidence, shown him how to correct things on his own very easily, and given him greater strength in his body. All round he’s coping a lot better.”