On 9th July 2018, Orlaith Frances was born. I’d had an uneventful pregnancy with all scans coming back normal. Other than her being a bit of a whopper and struggling with blood sugars she appeared to be a healthy baby girl.
Four weeks later Orlaith started having diarrhoea and in the space of 24 hours we’d gone through nearly 30 nappies. I just knew something wasn’t right. We ended up in A&E at our local hospital and then were admitted to the children’s ward; the diarrhoea was suspected to be a cow’s milk allergy. We were then floored by the news that the doctor had heard a heart murmur and she would be sent for a scan in the morning. All night we were monitoring fluid in and out and she was constantly having her vital signs checked. Her BP was significantly lower in her legs than in her arms – I think then I knew this was something serious.
The next day we had the scan and, after what felt like hours, the doctor came to speak to us. Orlaith had two holes in her heart and a narrowing of her aorta. They had been seeking advice from the specialist congenital heart team at Glenfield and they wanted to see her. They had a bed for us the next day, so we were transported over in an ambulance.
When we arrived at Glenfield, Orlaith was scooped out of my hands and whisked into a room where there were 5 doctors and 3 nurses. Wires were attached, scans and X-rays taken in the space of a few minutes. I was really scared. The doctor then sat with us and told us that she wasn’t in immediate danger so didn’t need emergency surgery, but she would need it in the next few months. They wanted her to put more weight on and to get stronger for the surgery. So, the next day we were sent home, with what felt like a ticking time bomb. The next 8 weeks were hell. I isolated myself with Orlaith at home to avoid infection. We fought and fought to get her to feed and put on weight, she ended up in hospital numerous times in between for lack of feeding. Eight weeks later it was clear that she was becoming very ill and in heart failure. The surgery had to be done. So, on 9th October 2018, Orlaith had open heart surgery to correct her heart defects. Whilst doing her surgery they found a fourth defect which was also corrected. She spent five days in PICU and a further three days on the high dependency ward before we came home.
She seemed to be getting stronger every day and feeding better, but 4 weeks later she caught a cold and completely stopped feeding. We were readmitted to hospital for another week and, in the end, we came home with a baby with a feeding tube. She had the feeding tube for another two months until she finally started taking good amounts of milk.
At six months old she started taking some solids. This was a big turning point. She stopped sleeping so much and became a lot more aware of everything around her. It was at this point that I started to notice difficulties she was having. She couldn’t roll over and was getting very frustrated with things. I could see that the desire was there for her to play but she just couldn’t. Every day she would spend large portions of the day screaming in frustration and I was really struggling. My Mum kept talking about a place called Steps and she said I should contact them.
Up to this point my concerns about Orlaith’s development had been brushed off medically and I was told over and over “she’ll catch up, it’s just because she’s had surgery”. I second-guessed myself and felt like I was making a mountain out of a molehill and so didn’t think she would qualify for Steps’ help. One particularly difficult day, I’d just spent the day in tears. I wrote it all down and sent it in an email. I didn’t think I would be able to talk on the phone; it was so hard saying these things out loud. Indila emailed back the same day and invited us for a taster session the following week.
My mum came along with me to the taster session; I was nervous and felt very emotional. The second that we stepped through that door our lives changed. We were welcomed literally with open arms; it was clear straight away what a warm friendly place Steps was. We went through to the playroom and got chatting to other parents all of whom were so welcoming and put me at ease. Then we took part in a session. It was all a bit of a blur, but it was wonderful. Orlaith’s stamina wasn’t great so she fell asleep towards the end, but it was just marvellous. When I got home, I just sat and sobbed. It had been an overwhelming afternoon and I was so grateful to have met people who just seemed to get it. They understood what Orlaith needed, they didn’t second guess what I was saying or make me feel like I was an overanxious mum. They understood what I needed and from that day I felt supported.
We continued going to Steps every week and Orlaith got stronger and stronger. She would still fall asleep a lot, but her stamina built up. She started to roll over, then learnt to sit up and by 12 months she started to crawl in her own unique way. I am 100% convinced that Orlaith would not have achieved these milestones when she did had it not been for Steps. Going every week to Steps is magical, in a fog of worry you get to see the small progress that comes with each session.
My worry continues with Orlaith; as she hits one milestone something else shows itself as a concern. Physically, she is really catching up now, but cognitively she finds some things difficult. Her learning and understanding are behind, and we have struggled to gain medical help for this. This is another example of where Steps is such a lifeline. It bridges the gap between what is available through our stretched NHS and gives vital support to families like us. Steps is a solid reliable support system; I have asked for advice and help on so many occasions and it is always given so graciously.
Both myself and Steve have suffered with mental health problems since having Orlaith, going through such a trauma seeing your child so close to dying is a hard one to get over. I have suffered with PTSD and anxiety and Steve struggles too. It’s so easy to get lost in a sea of hospital appointments, worry, anxiety and trauma. So many of us must be more than just parents – we must play the role of nurse, physio, advocate and so much more. Steps, for me, provides a chance to feel like mum again. Just mum. And that is such a gift.
Steps has helped me cope with my struggles, coming every week, being with other families that understand and having the support from the staff is such a comfort. I suggested Steve started coming along to Steps too so he could see the magic of it first-hand. He commented on how wonderful it is to see me feeling so at ease and comfortable and how Steps seemed like a big family. That is exactly what it is – the staff are phenomenal, the love they have for the children and their families is humbling.
I consider our family to be very lucky to have been able to access Steps. We have taken them into our hearts as much as they have welcomed us into theirs. Thank you.
On September 11th 2015 Alfred George Chapman was born. Sadly 25 minutes before he was born his heart rate dropped significantly. He had the umbilical cord wrapped twice tightly around his neck. He was born flat (unresponsive) with only a low heartbeat so the antenatal team began resuscitation. 7 minutes after birth he took his first breath and was quickly ventilated. We didn’t see our son again for over 3 hours, we were just told he was very poorly.
Unbeknownst to us at the time, Alfred had suffered lack of oxygen to his brain, otherwise known as Hypoxic-Ischemic Encephalopathy (HIE). To prevent the spread of any brain damage that might have accorded, he was cooled to 33.5 degrees Celsius for 72 hours. This meant he had to be transferred to Nottingham Queens Medical Centre’s Neonatal Intensive Care Unit. On the way there, Alfred suffered a seizure which was a sign his brain had been affected. When we arrived at the unit, we were told his brain activity was not looking good. That was the hardest and worst part of our story. Hours later our little boy went into full fighting mode. He pulled his ventilator out less than 12 hours after being born and began breathing on his own.
Over the next three days he was awake and cold most of the time in his incubator. 72 hours since he was born he was warmed up and we were finally able to cuddle our precious son. Later that day he was sedated and taken for an MRI scan to see how HIE had affected his brain. At 5 days old we were told Alfred had acute brain damage to two areas of his brain. They couldn’t however tell us how or if this would affect him later in life. We could only wait and see. At 10 days old we were finally established oral feeding with Alfred and we got to take him home. We had all the hope in the world this was the end of our emotional start to parenthood. He had all good reactions for a newborn baby and even started smiling at a week old. Everyone who knows Alfred knows what a flirt he can be. Well that started very early on.
Due to his start in life his development was always going to be monitored just in case for 2 years. On January 14th 2016 we went for a check up with Alfred’s physiotherapist. I was slightly concerned he wasn’t using his arms like other babies were, sadly I was right to be concerned. It was the first sign the brain damage has affected his physical development. Over the next few months his physical abilities progress and a snail’s pace. We soon realised this wasn’t just a development delay, it was more serious. Although we knew all the signs were pointing towards Cerebral Palsy, to say it out loud was very hard to come to terms with.
Cerebral Palsy (CP) is a neurological disorder which affects body movement and muscle coordination. CP is a massive umbrella term to describe a wide range of disabilities. Some may be very mildly affected, where as others have no control at all.
Alfred’s official diagnosis is Quadriplegic Cerebral Palsy with more right side affected. This means all four limbs are affected with body movement and muscle coordination but his right side is worse than his left. One side affected is known as Hemiplegic.
At nearly 2 years old he still hasn’t got the muscle control to sit unaided, stand, crawl or walk. However we believe with a lot of hard work and the right input, he will achieve everything he wants to in time.
One of the most important inputs for us as a family has been Conductive Education at STEPS. This charity has taken away a scary dark cloud in our lives and made everything bright again. We take Alfred to classes at STEPS weekly, those classes focus on the child, not the disability. They are our life line and have helped with Alfred’s progress since January this year. We are so lucky to have met some amazing families through this charity, families just like us who want the very best for their child and hope one day they will develop the skills needed to achieve anything they set their minds to.
As a family we are a team and we will continue to work hard together to give Alfred the very best start in life.
Any funds raised through the Team Alfred fundraiser will be split between anything that will enhance his opportunities and STEPS as they desperately need funds to remain open and help families like us.
Our son Charlie was diagnosed with cerebral palsy at the age of 18 months. Since then we have had to learn about his condition and try, as a family, to come to terms with it and the ongoing impact it has on all our lives. It can be hard when you have a disabled child, not to feel isolated and different from the other ‘normal’ families around you. You also have the worry of what the future holds for your child and what you should be doing to help them.
We were very relieved to find out about Steps when Charlie had just turned 4, because we knew that we would meet other families who had children with cerebral palsy and that it would be an ideal environment for Charlie to learn new skills and mix with children who had problems similar to his. It was very good timing because he had started to become more aware of his condition and realised that he was not as able as his baby sister and friends at nursery school, and had started to ask questions like, ‘Why have I got this and not my cousin?’ and ‘When will the cerebral palsy go away?’ It was so helpful to have the support of the staff at Steps around this stage, as it was quite a tough time for us.
Charlie has been going to Steps for seven years now, and I have to say that the help and support we have had from the staff has been a real lifeline for us. All the team are so encouraging and enthusiastic and they put so much effort in to making the sessions fun for the children, even when they are challenging them. They always make you feel welcome and are ready to offer advice or give help if you need it. There is always a chance for the parents to get together and have a chat, which is sometimes just what you need to get you through a tough week.
I would say to anyone who is considering bringing their child along to Steps that you won’t find anywhere else like it. It is unique and we feel very privileged that we have been able to be part of the ‘Steps Family’ for so long.
Thank you for all you have done for our family.
Fiona (Charlie’s mum)
Su and I had been enjoying married life for sixteen years when we had the news that our team of two was about to become a family of three. We went through all of the planning that all prospective parents go through with a few added complications including moving job, moving country and moving house…twice!
A further complication came when our daughter Ellie was born five weeks early and we were told almost immediately that she had Down syndrome. All of the planning for our special little girl seemed to be in turmoil. We entered a strange world and we felt lost and unsure, unsure of what the future would hold for our wonderful little girl.
Within 24-hours we were told that Ellie needed emergency surgery to save her life and we were faced with the prospect of possibly losing our wonderful, tiny little girl. The surgery was a success however she was left with a colostomy and she would need two more surgeries within her first year. We were also advised that she had three holes in her heart.
Our life was thrown into a constant trek to doctors, hospital clinics, consultants and Specialists. Yet somewhere amongst all of this our wonderful little girl began to thrive, and what’s more she began to teach us what life was really all about.
Su found out about this place called Steps where some other parents were taking their children with Down syndrome. We got in touch and Ellie was enrolled. Ellie and Su started at Steps when Ellie was six months old. Su joined other parents of children facing similar challenges, shared information and experiences whilst our children were learning and developing under the direction of the staff from Steps.
With Down syndrome, Ellie has speech and language difficulties, a learning disability and problems with gross and fine motor skills. The staff at Steps ensure that we focus on these areas and more to develop Ellie to her maximum ability. We attend weekly sessions which focus on the development of motor skills and communication skills with specialist staff trained in the methods of conductive education. The focussed and intensive sessions have really helped Ellie to develop and we are convinced this helped her to walk before her second birthday.
Ellie really loves attending Steps and both Ellie and Su look forward to the sessions. The staff show great empathy and are very supportive to everyone’s needs. Ellie is now three and a half and we have developed and grown so much as a family in that time. We now understand Down syndrome and the impact it will have on our family and on Ellie’s future. We are in a much happier place than we were in July 2006 and Steps has made a huge difference to us.
Ellie and our family would like to thank all of the people involved in Steps, the staff, volunteers, Trustees and other parents. We would like to especially thank the other children for showing us not to consider ourselves as a disabled family, but as a family with a little girl that is coping with a disability.
Steps has helped to change our lives.
Tony (Ellie’s dad)
Tim and I were looking forward to the birth of our first child in July 2007.
Jessie however, had other plans and made a very unexpected entrance into the world on 2nd April at 25 (+6) weeks.
The three of us, our family and friends had a long journey ahead of us with many hurdles to overcome.
Jessie weighed 1 lb 13 oz, she started life on ½ ml of expressed breast milk every hour. At two weeks old she underwent a heart operation to close a valve in her heart. She weighed less than 2 lbs but came through like the little fighter she was turning out to be!
She was continuing to grow, but the one area that didn’t seem to be going according to plan was Jessie’s lungs.
We were told that we had to make a decision; Jessie needed to come off the ventilator before her already damaged lungs became worse. The steroids which were needed to help her were described as ‘miracle drugs’ but the downside was that they carried a high risk of Jessie developing cerebral palsy. At that point there was no decision to make; we would deal with the consequences if and when we needed to.
Twenty four hours after being given the steroids, Jessie had come off the ventilator.
Over the next few weeks and months she continued to improve, with the odd set back, but finally on 17th July 2007, we were finally able to take our little girl home. She came home with chronic lung disease and had to be on home oxygen for five months, but it was far better than trekking to the hospital every day.
Our theory was that we had experienced the traumatic bit so the ‘terrible twos’ were going to be a breeze and she would be a wonderful teenager! Jessie is now a feisty three and a half year old diva who did ‘terrible twos’ spectacularly, so I’m not sure our ‘teenager theory’ is correct!
She has developed normally in every way except with her mobility. She was delayed in her movement and has spastic diplegia; a form of cerebral palsy, in her legs. Jessie has had to wear insoles, pedro boots and a splint on her left let go try to stretch and strengthen her muscles. We don’t know if it was Jessie’s variable oxygen to the brain when she was on the ventilator, or the steroids that have caused her cerebral palsy, but after everything our little star has been through, it is a small price to pay.
Jessie, Tim and I have had support from many sources including all the Neo-Natal Staff at the Leicester Royal Infirmary and the Leicester General Hospital. Jessie’s Nanna heard about Steps and Jessie has been attending Steps sessions for two years, enjoying the incredibly wide range of activities. The staff at Steps, with their enthusiastic and encouraging approach, have been instrumental in developing Jessie’s movement, confidence and independence. They design a specific programme of learning for every child’s individual needs and a supportive, friendly environment for us all.
We now have a further addition to our family in Holly, who thankfully came on time. All the staff at Steps have welcomed Holly and made us feel part of the Steps family.
Thank you so much to you all for supporting us so brilliantly through Jessie’s journey.
I would like to tell you a story about a little boy called Jude. On New Years Eve 2008 we received the most glorious news during a routine 12 week scan, we discovered we were expecting twins! It was quickly identified the babies were identical and we were told from the offset to be prepared for complications, in particularly for a condition called Twin-to-Twin Transfusion Syndrome (TTTS). This is a condition only present in identical pregnancies – since the babies share a placenta, sometimes they do so unequally; where one twin will receive too much blood and nourishment from the placenta while the other receives too little. But the risk was small, in fact tiny. What were the chances of that happening to us? So there I remained in my bubble of bliss…
Everything seemed to going well, until during a routine scan at 23 weeks TTTS was identified. Within a week, the condition progressed rapidly, from mild to severe. We had to make the hardest decision of our life… to let nature take its course or to intervene. There was no hesitation…. we had to do something to give our boys the best chance of life. We were referred to a specialist in London where we had laser treatment to separate the blood vessels connecting the babies. It was an invasive procedure which was warped with complications… and sadly took the life of one of our boys, our beautiful Benjamin. Tragically the trauma of the laser treatment triggered labour and on Tuesday 24th March 2009, at only 25 weeks old, Jude was born weighing only 1lb 7oz.
Jude was the size of my hand, he was so very poorly when he was first born. He wasn’t breathing and was dusky in colour. They rushed him to neonatal and prepared us for the worse. At only a few hours old, Jude had a brain scan which identified a massive bleed on the brain. For 20 weeks, Jude remained in the neonatal unit. And it was a rocky 20 weeks, full of dramas and heartache. He had a perforation of the bowel at a week old, needing part of his intestines removed and a stoma fitted. He had a heart operation at 4 weeks, he had infection after infection, feeding problems, he struggled to control his blood pressure, seizures.
Each time something would happen, we would be taken into a little room and the same conservation would be said… ‘because of the severe bleed Jude has had to the brain, if he doesn’t start to pick up you will need to consider switching off the machines’. Countless times this was said to us… but each time we would leave the room in tears to see an angry little scrap of a baby fighting for his life! Although he was very poorly, Jude never once gave up.
A week before leaving the neonatal, his final brain scan showed that his bleed had developed in a way the doctors had hoped it wouldn’t… the brain had collapsed into the pockets of cysts created by the bleeds. We were told to expect a severe disability, both mentally & physically. After 19 weeks living on the neonatal rollercoaster, this news was like a slap in the face. I remember sitting in the parents room, numb, unable to cry anymore… when I saw a little flyer peeking out from behind some others. I saw this little flyer as a sign. It was for Steps, and I remember thinking ‘OK, so he has a disability… but that doesn’t mean he can’t lead a full and happy life. Why else would there be a place like Steps for these children?’
So into the real world we were catapulted… and next followed appointment, after appointment… It was a busy first year and Jude seemed to be doing OK, but something was missing… I felt we needed to be doing more for his development. ‘Normal’ playgroups weren’t right for Jude, play just wasn’t tailored towards children with special needs. It seemed, apart from Menphys special nursery, there just wasn’t anything available for us. I couldn’t accept this as an answer, we had to do something. I then remembered that little flyer from neonatal.
That first phone call was a big step for me, it was acceptance and realisation that my son was disabled and was needing specialist schooling. I was so nervous making the call, but hearing Trish’s kind voice talking back put me at ease instantly. There was no hesitation, an initial visit was arranged, a meeting with Indila… and I was hooked!
Of all the appointments Jude has and all the therapies he endures, Steps is where it all comes together, not only for Jude but for me too. Not only are the carers working at Jude’s physical and learning needs, he has such fun in the process. And it’s the little achievements which are precious, those milestones which would have gone amiss at a ‘normal’ playgroup. During hello time, children are encouraged to press a big mac button by themselves. When little Lucy from our Tuesday group pressed it without needing coaxed, I felt Lucy’s mum, Nicola’s, joy. I was so happy, not only for Lucy but for her mum too because I can relate and I understand what a massive deal that was. And I know I shared this delight with the carers too, which is what makes Steps so very special. Every little thing these children do is an achievement, however small. My 2 year old can walk on his hands, juggling potatoes, reciting the words of Shakespeare and it’s ‘oh well done Micah…’. Jude picks out a little knitted doll from a bag and pops it on the number board, I’m calling the family, marking this in his achievement book!
Steps has and will always play such a massive part in our lives. In the year and a half Jude has been attending, I have seen such a massive change in him. His capacity for learning has improved incredibly, I am so proud of what he has achieved since attending Steps. So much so he likes to try and run the class!
He is now such a happy, sociable, inquisitive little boy, attending Steps has given Jude so much confidence. And I am so very grateful for the support Steps has given me too. I now have a network of very special friends. I go to Steps and for the 3 hours we are there, everything is ‘normal’, which as a parent of a child with such complex needs, is so very precious.
Thank you for reading our story.
Kathryn is the youngest of our three children. She was born at full term, following a normal pregnancy. However, at four months old Kathryn was diagnosed as having had a skull fracture since birth, which had caused fluid to build up around her brain. Kathryn had an urgent MRI scan, quickly followed by surgery to insert a VP shunt to relieve the pressure in her brain and allow the fracture to heal. She later required a seven hour operation to repair her skull.
Throughout all of this, we were becoming increasingly concerned that Kathryn wasn’t using her left arm at all. It was like her left side just didn’t exist to her. At seven months old, we were told that Kathryn had unilateral cerebral palsy and because of the damage to her brain, she would struggle to control the left side of her body. Only time would tell how badly effected she would be.
This was our lowest point. We didn’t know what the future held for Kathryn but knew it would be a difficult one. At times like these you just want to find something to hold onto, anything to make you feel like you are doing something. We spent hours doing research and came across a type of movement therapy which helped children who had motor disorders, just like Kathryn.
Amazingly, it appeared we had a centre that was quite close to us, so we emailed Steps, just on the off chance that they might see Kathryn and be able to help her. It’s so hard reaching out, as its at that point you’re admitting that there is something really wrong. You think – “Maybe Kathryn isn’t effected badly enough for them to help. They probably have loads of other children that need help more”.
The welcome we received when we took Kathryn to Steps for the first time was like nothing we had experienced before. It was so friendly, so positive, and so warm. They just seemed to know what we were going through, they got it like no-one else did, even our families.
We were unsure at first whether Kathryn could manage the intensive therapy she was getting at such a young age, but the patience and enthusiasm of the Steps team knew no bounds.
Slowly, we started to see small improvements. Her strength and endurance growing, her awareness of her left side increasing, her greater willingness just to try and do more.
Then there was the moral support. Steps became a rock in our week, where Kathryn was getting help, and we felt we could see light at the end of a very long tunnel.
Kathryn is now two and a half years old and is the most loving, playful and determined child you will ever meet. Without Steps, there is no way she would be as coordinated and confident as she is. Kathryn has recently learnt to walk, which Steps has played a major role in. Although her development is still delayed in many ways, the ongoing support we get from Steps is nothing short of phenomenal.
To our family, Steps isn’t just a therapy centre, it’s a lifeline.
The following is taken from the speech given to the audience at A Question of Brains in November 2017 by Laura Beales Ethan’s mum.
“I met my husband at a mutual friend’s birthday party. After a whirlwind romance, we received a lovely surprise that we were pregnant with Phoebe. At first, we were told to expect a pink one, and the excitement and nervousness that comes with a first child was incredible. However, not too far from the end of the pregnancy, we were told that Phoebe was not quite as pink as we thought, more of a blue. A fraction of a second was spent to adjust, but nothing had really changed, we were still just as excited and happy to welcome a baby boy into the world.
Ethan arrived on the 29th September 2011, at 5.10am. We were ecstatic to bring him home and begin our life together as a new family. He was a very happy baby, smiling, chatting and rolling, just like we expected. However, at around 8 months, Ethan was unable to sit unaided, and we were noticing clenched fists. After talking to the health visitor, we were advised to seek the opinion our GP.
We had many visits to the GP, with incorrect referrals and inconclusive meetings, making us anxious and frustrated. We knew that something wasn’t right, and we weren’t able to find an answer to the problem. The battle to help my baby had begun and little did I know how much strength, perseverance and time I would need.
Whilst we waited for Ethan’s appointment with a paediatrician, we looked elsewhere for some information and help, we met a person who had and still has a major impact on Ethan’s development. At the time Ethan was unable to sit independently and trying to stand, and the frustration was immense, for both Ethan and myself. We met with Susanne Pascoe, a private physiotherapist, who performed an assessment on Ethan. During the assessment she showed us exercises and stretches to help Ethan. Following persuasion, Suzanne suggested that his symptoms reflect cerebral palsy.
At this point, although we knew something was wrong, and even though we couldn’t be certain, the emotions were very difficult to control. The small sense of relief that someone could explain his difficulties was drowned out by the fear and uncertainty of CP.
Although we were still struggling to come to terms with this initial informal diagnosis, and still waiting for a paediatrician appointment, Ethan’s health visitor talked about a local group called STEPS that worked with children suffering from motor and movement-based disabilities.
I phoned Indila to discuss Ethan and whether we could visit to see if STEPS would be able to help us. For our first contact, Ethan and I were invited to join a group from STEPS at the hydrotherapy pool at Rainbows hospice. From the first moment, we were made incredibly welcome, and it really helped that Ethan loves to swim! Everything about the group felt comforting and familiar, knowing that there were other people who were experiencing the same things that we were, that faced the same challenges, not just in terms of our children and their journey, but the journey of the parents and the constant battles to secure the help that the children need.
Eventually we took Ethan to his first of many paediatrician appointments. Our doctor was very sensitive to the situation and at the end of the appointment, asked us what we thought was wrong. Our fears were confirmed as he diagnosed Cerebral Palsy. Although you try to prepare yourself, and I suppose that we knew what to expect from their diagnosis, to have them confirm your fears causes you to break down in despair. They made it seem much more real, more severe, more permanent, and nothing can take that back.
The diagnosis led to a variety of referrals from various parts of the NHS; physiotherapist, occupational therapist, speech and language teacher, special educational needs coordinator, eye doctors, hearing doctors, MRI scans. The constant physical and emotional drain of meetings is hard to explain. Suffice to say, it is difficult to continually hear medical professionals tell you that something is wrong with your baby, that they won’t be able to do the things you hoped that they would.
In the meantime, we continued to attend STEPS each week, and Ethan learned how to shuffle along on his bum. This was a major step for him, giving him a new world of freedom. Each positive step, whether big or small, must be celebrated to keep you strong and to keep you believing.
In September 2013, Ethan underwent an MRI scan. At a follow-up appointment, Ethan was formally diagnosed with a condition called bilateral polymicrogyria or PMG. The devastating news was compounded by the assertion that children with PMG have huge developmental difficulties, such as severe problems with movement, speech, eating, epileptic fits, and other associated learning difficulties. However, by this stage, Ethan was eating happily with a spoon, had movement in all limbs, was able to sit up, could bum-shuffle, pull himself to standing, and his education coordinator confirmed that cognitively speaking, his mental age was as it should be. By the age of 2, Ethan had already achieved more than the paediatrician had originally believed he would, and was pushing the boundaries to achieve more.
When you first sense that something may be wrong with your child, a variety of emotions whirl around your mind. There is a sense of grief and denial, a belief that this couldn’t happen to you. Yet you learn to come to terms with the new reality, a new ‘normal’, as it is bigger than just your own feelings. No matter how difficult you think it is for you, there is a young child that has it much harder, and you know that it is your duty to help them to triumph in their own way. It is a strange kind of privilege to be the ones to support and guide somebody through a very difficult situation, and that responsibility gives you the strength to fight.
I would like to share with you the thoughts of another mother, about what it is like to be the parent of a child with additional needs. A lady called Emily Kingsley who wrote a poem about special needs called ‘Welcome to Holland’
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo’s- David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
So you must go out and buy new guide books, and you must learn a whole new language, and you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy. Less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…. and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say…”YES THAT’S WHERE I WAS SUPPOSED TO GO… THAT’S WHAT I HAD PLANNED.” and the pain of that will never, ever, ever go away….. because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely thing … About Holland!
STEPS plays a massive role in our lives, helping to give Ethan, my husband and I the strength to keep fighting. Being able to talk to other parents, in a friendly environment where our children feel calm and happy, is amazing. Even if you are going through hell, there are others around you that have been through the same, who understand what it takes to come to terms with a ‘new normal’. Knowing that there is a place where your child will be accepted for who they are, no matter what, provides a peace of mind that is difficult to describe, but is beautiful nonetheless.
For Ethan, STEPS is an amazing opportunity to learn, have fun, and receive a different kind of treatment and education. His condition means that his muscles become very tight and so he requires muscle rubs and stretches at least 3 times a day and during a growth spurt though the night. It is always uncomfortable, sometimes painful, but Indila and her team have many ways to distract him from this discomfort. I have learned that there is a song for everything, and by golly do those ladies know how to sing!
The staff help to teach the skills that don’t come naturally to Ethan and the other children because of their conditions. ‘Normal’ activities are included in the programme as well, such as cooking, painting, making music, and eating sand! However, I think that last one is just Ethan.
Without STEPS, the journey for Ethan and I would be so different. I cannot describe the importance that it plays in our lives, the impact it has had on him, on me, and on my family. Despite the major role of the NHS and the private specialists, I truly believe that Ethan would not have developed into the happy, playful, confident and friendly boy that he is today without STEPS in our lives.
To conclude, STEPS provides the support to help children develop and prosper. They recognise that every child has their own challenges and targets. Their achievements, no matter how small, should celebrated with passion and pride. The look of joy and happiness on their faces as they succeed in surpassing expectations, and the sense of wonder that you feel as a parent makes it a truly wonderful place. The staff cannot be praised highly enough; without their guidance, knowledge, patience and passion, the children’s lives would be a much darker place. So I would like to thank STEPS for bringing a ray of light into all our lives, for making our children smile, and for helping them to grow and prosper in ways we sometimes don’t imagine.
I would like to thank you all for coming tonight to support STEPS and all the wonderful work that they do, and to ask you to continue to support STEPS in the future. With your help, they can continue to be there to help other babies like mine.
For us, Steps is worth its weight in gold.
Our seventeen month-old son Mikhail who is a surviving twin, suffers from brain injury. This limits his mobility and delays development. However, after starting at Steps during the last three months, we have noticed progress and an improvement in Mikhail’s condition.
Mikhail has become really aware of his environment and has begun to interact with other children. “When he reached out for Harry, who also attends Steps, it brought a tear to my eye,” says Gemma.
The activities that take place at Steps are fun for Mikhail and involve all the necessary movements to promote development. The staff at Steps are fantastic, always helpful and supportive.
Mikhail enjoys the twice weekly sessions at Steps. It has been the best choice in terms of education. Being teachers, we both feel the need to encourage Mikhail as much as possible and conductive education has been the perfect choice and route.
Ferman and Gemma Uddin (Mikhail’s parents)
On Sunday 27th November 2011, at only 30 weeks, Reuben & Merryn were born weighing 3lb 7oz and 3lb 2oz respectively, a healthy weight we thought and things would be okay. But our lives were about to change that night and our world, totally fell apart.
As soon as we saw Merryn, we immediately suspected that she had Down syndrome. There had been causes for concern throughout the pregnancy that only we seemed to have picked up on. We raised this with the Consultant in the neonatal unit and were reassured by him she hadn’t, much to our relief. 24 hours later we were told that there was another consultant, who was not convinced about this visual assessment for Merryn and the test would be required. 24 hrs after that we got the dreaded “please come to the little meeting room request”. The test indeed showed that Merryn had Down syndrome. From that day onwards our little teeny Merryn turned into the biggest drama queen the neonatal unit had ever seen, with constant recurrent episodes of profound apnoea and needing regular heart scans ensuring our heart strings were well and truly being pulled and she was coming home with us and no one else. 14 weeks of life on the neonatal rollercoaster followed, always on a knife edge.
Both our tiny babies were rushed to the neonatal unit straight from birth; Reuben was very poorly and needed to be ventilated as he wasn’t breathing correctly. Merryn just a tiny dot was doing a little better.
My wife then started to suspect something was not quite right with Reuben, as on her daily visits to the neonatal unit Merryn would disco dance all day long, whereas Reuben despite an active start, would lie there, very still and wide eyed, just gazing. Christmas and New Year passed and in early January Reuben was given a date to return home. On a routine exit brain scan the day before we were taking Reuben home, a bleed on the brain had been identified where the brain had collapsed into pockets of cysts. For a second time in 6 weeks, we were called away to the little meeting room. The visual damage shown by the scan was in the moderate category but he was likely to develop cerebral palsy to some degree, which would limit his mobility and delay his development.
So we were faced with not just one disabled child but both, combined with the fact my wife (Michelle) had suffered a stroke in her late twenties leaving her the use of her right arm only and reduced mobility, the news was devastating for us and for our family and friends around us. We cried until no more tears could be cried, we felt scared and unsure what the future would hold for our beautiful twins. All the preparations seemed wasted….?
Sadly our heartache didn’t finish there with Reuben being discharged from hospital earlier than Merryn, we then had 3 emergencies with the Ambulance being called and him being rushed back into hospital, the first time with viral meningitis, to which he turned blue and stopped breathing at home, the second with bronchiolitis, again reduced oxygen turning him dusky and the third with a collapsed lung. Michelle would then spend the morning with Reuben in Children’s Intensive care and the afternoons with Merryn on the Neonatal unit of the Leicester Royal Infirmary. Life was exhausting….
In March 2012 we finally got both of the twins home, a happy time for having made it through the worst 3 months of our lives, but now came the hardest part of all, in accepting what life was now going to be like and the long journey of finding out how the twins would develop. It was at this point that we were introduced to Steps. Straight away the help, emotional support and expertise provided, really started to put things into some sort of perspective. Equally as important is the social aspect of steps in meeting other parents and their children who have also been through similar events.
Subsequently Reuben went on to develop an epilepsy syndrome called West Syndrome and has been diagnosed with significant visual impairment, all within his first year of life. Poor little chap, I would love to tell you `he just gets on with it’ but unfortunately, he does do a lot of moaning and screaming at us all, but we have to except it’s his only way of communicating. It’s very difficult to manage him but when he does give you a kick of his legs with a smile and a giggle; it really lifts us to keep on going. My wife’s life now is dedicated to Reuben & Merryn and our eldest son Finlay as their full time career. This mainly involves taking the twins to hospital and therapy appointments including Steps Conductive Education.
Reuben & Merryn enjoy attending their weekly sessions at Steps. For over a year now and it has been the perfect choice and we have noticed great progress and improvement in both of the twins, we feel very privileged for this. The activities are fun, even though they are challenging for them and involve all the necessary movements to promote development. Michelle has never looked back since attending Steps, the staff and other parents have been a tremendous support through our journey so far to which we are very grateful. Steps is unique and perfect for finding the positives in our special children, and somewhere that should always exist for families like ours that would be lost without their support.
Steps has helped change our lives for the better.
My son was diagnosed at 14 months old with cerebral palsy. Our lives changed overnight and our world fell apart. Around two weeks later I was watching the lunchtime news and it mentioned that Peto UK was opening in London. I immediately telephoned for some information and was introduced to the wonderful world of conductive education.
From the day Shaun started, our lives once again changed. It was fantastic to meet positive, happy people instead of all the negative professionals that we had encountered along the way, especially as we had been told that he would never walk and would probably never even be able to turn over in bed without help. It was immediately beneficial for Shaun and within weeks he could roll over in bed.
Our family never looked back. I know that without conductive education in Shaun’s life, he would not have grown into the man he is now – sociable, happy and always eager to try anything new. Shaun is now completing a four-year course at Brooksby Agricultural College on animal care.
Conductive education finds the positives, finds out what children can do and supports parents through their journey.
The work started when our own family got involved by launching Steps and now over 300 families have been helped through the fantastic work that is done at the centre. All of this is because one little boy, called Shaun, was diagnosed with cerebral palsy!
Deborah (Shaun’s mum)
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