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 Suzanne 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.