Difficult Decisions

When your child has Down's Syndrome, it is incredibly hard to predict the future.  Each child is different and affected differently by their condition -  Down's Syndrome is a blanket term and does not indicate all the variations that may occur.  General assumptions include heart problems, shortness of stature, stubborness, severe learning difficulties.  Yet my own daughter is as healthy as an ox and rarely stubborn; I've known a lad  who was six foot tall and spoke so well you would not have known he had Downs; there are other children who have the utmost difficulty in saying even one word and who understand very little of what is said to them - the spectrum is vast.

So when it comes to choosing an education for your child, it is vital that the choice is made to suit that individual child regardless of their diagnosis.  This is not always easy to do and sometimes it is a pure leap of faith,  When my daughter was a baby and visited various paediatricians, the future was predicted to be bleak.  The basic concensus was that she would grow up to be a vegetable and be nothing but a millstone round my neck - bearing in mind, this was over 20 years ago in Greece where it has taken a while for people with disabilities to be accepted.  However, as she grew and after a lot of work was put in at home with Portage and a place in a pre-school where the teacher was trained in SEN (special education needs), it was clear that she had far more potential.

Therefore, when we returned to the UK and she was given a place in mainstream infant school, I was adamant that she should stay in mainstream education for as long as possible - it was obvious that she was coping, despite having limited language skills.  She was reading by the time she moved on to primary school, was able to follow class routines, had a wide range of friends, was toilet trained, able to eat unaided, change for PE with the help of her LSA (learning support assistant) and pretty much understood everything that was going on.  So in my heart I knew she was in the right place.  Years later in secondary school however, when her peers were choosing exam options, wearing make-up and having boyfriends, it was time to make the decision for her to leave mainstream education and go to a special school teen unit.  At the time, with the options available it seemed the only choice to make and was incredibly hard to come to terms with.  In retrospect, perhaps it wasn't the best we could have done for her, but you cannot know that at the time.  All you can do is what you think best - but what has to be taken into consideration is what is best for your child, not for you.  In our case, despite a couple of years when my daughter was bored to tears at this unit and not at all happy, she came out the other side and went to college after all, and is now in a programme of activities that suit her perfectly.  I have to admit that a lot of it is more due to luck than judgement - or at least that is how it feels.

The point of this post though is that sometimes it has to be accepted that mainstream is not the best option for your child. I have worked with several children with Down's through their infant years and each one was hugely different.  One needed a lot of help initially to learn social skills (and not to swing off my hair!) but was very capable when it came to learning to read and write; another could not ever be left alone or they would wander off but was very able to speak and cope with written work; yet another had barely any language skills but understood everything going on around them and could be left to their own devices alongside the rest of the class when not in a one-to-one lesson; yet another was sweet, calm and affectionate but could not talk, sign or comprehend 90% of what was going on in a busy classroom.  

When it is blatantly obvious that the child is getting nothing out of a mainstream education and failing to reach their potential, then it is time to re-stock and consider other options. The bottom line is that the child should be given all the help they need to fulfill their potential and anything less than this is depriving them of a chance to lead as normal a life as possible in later years.  As a parent and an LSA, I can see both sides of the situation but I have always felt that the child's needs should come first - a child is totally dependant on the adults around it, therefore the adults should try to offer whatever is necessary to help that child grow and learn. It is not easy, but once you have a child with Down's, your life changes in so many ways, one of which is having to become incredibly unselfish - you have this new person who is totally dependant on you for everything and who will stay that way for far longer than 'normal' children.  Tough decisions have to be made on a regular basis and many of these decisions are very hard to face up to but have to be faced no matter how unconfortable they make you feel.

I recently visited a  special school and was amazed and impressed at the amount of equipment and facilities available.  The staff/pupil ratio was 2-1 and in some cases 1-1. The staff were knowledgeable, calm and cheerful and the children were happy.  I think in a lot of people's minds the words 'special school' conjure up an antiquated view of somewhere bleak where children with SEN are sent to get them out of the way and give them something to occupy their day.  Far from it - these days they are vibrant cheerful places which can open all kinds of doors for the children that need it.  If it comes to the point where mainstream is not the place for your child, then the alternative is very, very good.