31 years ago, at the age of 23 and cradling my second son in my arms, I walked happily into the clinic for his six-month check. I walked out devastated
Walking into the room I naturally greeted the Health visitor with a smile, sadly Simon didn’t and this lack of interaction and response was enough in her professional mind to raise alarm bells and set us on a path that we still walk on today. The path of a parent of a son with special needs or as Simon has come to call it in recent years “a few little problems.com”!
I can’t remember exactly how quickly it all happened but I feel like I walked out of that appointment and straight to the next one, and the next and the next for the next 31 years.
A week in a nearby hospital left the doctors none the wiser and we very quickly found ourselves at Great Ormond Street hospital for another grueling week of tests. There is a lot I don’t remember about that time but I remember the waiting and the heat. Endless hours of waiting for news in a stifling ward, full of other parents with the same worried look etched on their tired faces. Waiting for a doctor, for a nurse, for anyone to explain to two frightened young parents what lay ahead. The waiting continued and the worry escalated, until finally at the end of the longest week of my life we were sat in front of a doctor to hear their findings or in this case, lack of.
Endless tests had shown no definite reason for Simons’ lack of reaction, floppiness and developmental delay. They couldn’t tell us what the future held, whether he would walk or talk or ride a bike or go to school. We walked out of that hospital with no idea what the future held. Thankfully I was happily married at the time and had lots of support but it was the beginning of what has often been a very lonely, unceasing, unchartered journey, and a real test of unconditional love.
Although no definite diagnosis was given Simons’ symptoms came under the umbrella of Mild Cerebral Palsy and learning difficulties. All his milestones were delayed but they did eventually come, albeit in a bit of a wobbly way, and still continue in the same vein. I remember the day he was asked to be a page-boy with his brother, we said yes but didn’t know if he would be able to walk down the aisle, im sure you can imagine our joy as we watched our two little boys walking hand in hand behind the bride. Each little step was a tearful, joyful reminder of how far he’d come…. how far we had all come.
Simon was able to attend a regular primary school with additional support. The regular review meetings we had to attend would often seem endless and I can remember at times having to hold back the tears while sitting through those discussions, and at times not having the energy to hold them back. How I longed to just be a regular parent … that alone can be hard enough.
Due to the extent of his learning difficulties, it wasn’t possible for Simon to follow his brother to secondary school and a special school had to be found. This was hard for Simon as he had to leave a lot of good friends behind and a social setting that not only kept him closely linked to his peers, but to his other siblings as well. Simon spent some happy years in his next school but has often expressed a sense of sadness for the loss he felt.
This year Simon has learnt to swim, I felt the same pride watching my 31-year-old having the courage, at last, to lift his feet off the bottom of the pool, as I would have had for the little boy walking down the aisle….Taking our feet of safe ground can take a real leap of faith, and its taken many years of trying for Simon to eventually get to that place.
A few years ago Simon was diagnosed with Dystonia. This affects his eyes which without Botox injections would blink uncontrollably. It also affects his jaw and when not controlled with medication his muscles will spasm where yours or mine would stay relaxed. At its worst it can be distressing both for Simon and to those around him. The last time this condition crept out of the medications hold he wept and asked “why me mum? why do these things always happen to me”?.. what answer could I give, is there any rhyme or reason why one should be totally healthy and another not. All I could do was hold my son and tell him I loved him just as he was, that he was perfect just as he was and we cried together.
Being Simon does not make for an easy life. At first glance it may be hard for an onlooker to understand the difficulties, but walk in his shoes for a day and it would soon become clear. Belts, buckles, buttons, laces.. weren’t these things invented to make life easier? Maybe for you and me but they can bring frustrating challenges .. thank God for Joggers and velcro! Milk on cereal.. can’t open the milk…. Beans on Toast…. can’t open the can…. as a reformed smoker to e cigs help is needed to open the liquid bottle and even at times to operate the thing. GIVE UP SI !!. Spreading butter on toast has never been so difficult and the butter is often seen shooting across the floor as keeping the little blighter still is sometimes impossible. Even after advice from professionals and purpose-built aids suggested we are left wondering if the inventors of the aids have ever witnessed the problems first hand. This is just the tip of the iceberg and when asked to explain those ‘few little problems. com’ its hard to know where to start. Living it daily is the only way to let blind eyes see.
Simon often isn’t aware of danger.. as a child he would run into the road without a second thought, as a teenager and young adult there have been many hairy experiences where consequence and actions are just not thought through and many near disasters have thankfully been avoided… just, but this is Simon and we all love him for it.
Simon loves drumming and has been learning for a few years now and is actually really good. It’s strange how someone who isn’t well-coordinated can excel at something which takes a lot of coordination. Keep it up Simon! Your grandma(dodo) would have been very proud of you when you played the drums in her honour.
At the age of 23 I didn’t know who I was let alone know how to deal with the path id been given. We become parents with no training and learn as we go along and I guess the same can be said for life with Simon. Each day brings challenges and each day we get through them somehow. I have 3 other amazing children who support their brother whenever they can. I know that at times, my energy has been aimed in one direction but I think they all know that they are loved equally.
Maybe your reading this and are just at the beginning of a difficult journey or finding your way through a similar one. I hope it encourages you to know that others have been there too and somehow we made it through. For those of you who know Simon maybe the next time you go to get your cereal you will find a new appreciation for such a simple task and think of him.
Thanks Simon for being you and for making life anything but dull x
Love Alison x.