Special Needs Families: Inclusion in Brown Towers

He was only about a week old and had been suffering from a level 4 brain bleed. The words had been mentioned by one of his consultants as a possibility and had slowly begun to sink in.

On receipt of this news, I nipped out to Sainsburys to get some food and I remember sitting in a chair by the checkouts feeling like the loneliest man in the universe.

Our son was not going to be “normal”, he might never walk or worse? Then his bowels burst and I stopped thinking about Cerebral Palsy.

Thomas was rushed by emergency ambulance to St Marys for surgery and over the next few months began his battle with life and death.

I didn’t much think about Cerebral Palsy in those dark days and months and when I did, it was mainly because he had developed Hydrocephalus. More surgery, this time Neurological. Thomas became bionic and edged his way off life support.

All we thought about at this time was getting him home. Cerebral Palsy was never even mentioned. On February 21st 2013 we finally got Thomas home with his twin sister Mia, then weeks later Jo took Thomas for a routine eye test and we discovered he was blind or Cortically visual Impaired to give it its correct and fancy title.

Cerebral Palsy? Nope, wasn’t thinking about it then either. Eventually though it caught up with us.

The biggest problem with having a twin sister is we had a day to day point of reference so it was clear to see where Thomas was falling behind. Luckily Thomas struck gold with his Mummy. How many severely disabled children are born to a highly experienced special needs teacher?

Jo knew exactly what equipment she wanted and how to get it. I strongly believe that gaining the “Little Room” was were things began to go right for Thomas?

Whilst Jo set about a regimental sensory development programme for Thomas, I was just Dad.

The initial despair I felt in Sainsburys was because I had learned I might be in receipt of a broken child but having lived through what we had lived through he was no longer a broken child, he was just Thomas.

The mantra at Jo’s school is “Inclusion”, this policy also applied to Brown Towers. So without deluding ourselves to the scale of the task, I chose to ignore his disabilities and get on with being Dad.

His disabilities would not be a barrier to me. What does this basically mean?

Well in simple terms we don’t stop to think “Oh we can’t do that thing we really want to do because of Thomas.”

We think “How can we do that thing we want to do and make it worthwhile for Thomas?” instead. This might take an epic bit of planning or an degree of accommodation from people but with the right attitude you can carry people with you. If in doubt, present your plans as a fait accompli :-)

Take camping for example. We realised holidays with 4 kids, 1 of whom is profoundly disabled, would be tricky so last summer we bought a Bongo.

We carefully figured out how we were going to camp with Thomas and his siblings then starting with nights on our drive to get the feel for it.

This was followed by short breaks in local camp sites and finally once we had gained our groove and ascertained what equipment we did and did not need, we ventured off for a tour of Britain. We had a fabulous time.

But Thomas is not only a fully paid up Bongo Camper, he is a future Paralympian shot putter, a rambler, a connoisseur of vintage rock music and a valued participant at Red Rose Rollers roller skating where they even select the playlist around his preferences although he is a bit weak when it comes to the limbo competition.

With his physiotherapy, OT, standing frames, his Scooot and of course his Upsee we have high hopes that eventually Thomas may one day walk in some fashion.

Until then he his heavily dependant on his wheelchair and lots of other specialist equipment. Most of which is neither small, lightweight or easily described as “portable”.

Thomas sees his sisters doing “Normal” things and wants to join in. We try to facilitate this in whatever fashion we can muster.

Of course life is tough bringing up a disabled child in an inclusive household with multiple siblings but by challenging both Thomas and ourselves we know its worthwhile as every experience develops his potential towards what he can be. Isn’t that all we can ever hope for as parents?