Our Diary

Having two children with quite complex special needs makes life more than a little interesting! One comment we get frequently when the topic comes up is "Oh that is a shame!" Whilst in all honesty I would not have chosen for Michael to have the issues that he has, this always brings a wry smile to my face as I and certainly he would not regard his life as one to be pitied. From our point of view, we made a conscious choice to have two children with additional needs as Elise is adopted and has been with us now for five eventful years. Not knowing anything any different, we parent in a slightly less conventional way but to us that is our normal - whatever that ise! Yes, things are difficult at times and when your child is standing there laying into you physically and emotionally , there are times when one does wonder what life would be like if it had taken a different path, but genuinely these moments are brief and I love my children to pieces even if at times I do not like them as much as I should!

Nearly everything that I do now revolves around special needs, whether it is being on committees, fund raising groups, special needs befriending or running Special Families. Every single one of my friends apart from one has a child with additional needs - not a process which has been by design (you don't have a child with additional needs - not my friend!) but purely due to the fact that we all share a common bond and empathy which others simply do not have, however well meaning. It sound crass but I really do love what I do, none of which would have happened if I had not found myself in the situation that we are now in. Every little achievement, every little smile, fills me with pride beyond explanation and I am safe in the knowledge that I can do no more for my children than I am. Their lives are full. Elise swims three times a week, plays golf, does horseriding, goes to gym club and loves art and is about to start playing the violin (still not sure about that one!) Michael loves everything. He swims twice a week, plays golf, rides, attends sports club and the gym, is learning the cornet, plays football, loves his bike and gardening. All done in a slightly modified way but all done with vigour and enthusiasm. We went to Stoke Mandeville mini games run by Disability Sports England a few weeks back and he was awarded the trophy for Best boy  -  not for winning everything but for his enthusiasm and good sportsmanship. I know that my children do not think that their lives are a shame or that they should be pitied. I certainly do not and wish that people would look beond the label and see how rich and fulfilling all of our lives are.

Hope that 2010 has found you all well so far. Life in our household has been hectic as usual and the arrival of two new children’s beds caused excitement beyond measure!! I can’t believe how much chaos was created by these beds and how long did they take to put up!! Pleased to say that neither have fallen out so far and although proving a challenge, the ladders have been navigated successfully. It was a bit weird, as prior to the new arrivals, Michael decided that he wanted to have his bedroom painted – the first time since before he was born. It was goodbye to Mr. Elephant and hippo and au revoir to Sippery Sid and co who had adourned his walls for the past eight years. Many parents would have been sad at the obvious symbolic removal of their child’s early years but as John said, we never feel that way. Yes, it is a bit poignant that we move on, but we are just so grateful that either of our children are able to move onto the next stage at all. The fact that Michael wanted a ‘big boy room’ was fantastic and a real indicator that our little boy was growing up. Bless!
On a completely different note, Michael has had a bit of a rough time at school the last week or so, being physically and verbally attacked by another pupil. All sorted now – school have been really supportive and it was not the other students fault directly as the incidents arose as a result of his own particular additional needs. It did make me think though as to whether this amounted to bullying or not? We hear so much about our children getting a hard time in mainstream school and very little about any confrontations in Special School environments. The end result was that Michael was getting bullied but the intent was not there as Michael was just the victim of another child’s obsessive behaviour. Does that make it any less of an ‘offence’? When is bullying not bullying or is it always so? If a child is attacked because the perpetrator cannot cognitively reason what they are doing does that make the act any less important and excusable? The end result is the same and  we were faced at home with a scared child who did not want to go to school but conversely, I am sure that the child involved had no clue as to the anxiety he was causing. An interesting one I think. Any thoughts gratefully received!
Anyway, we at Special Families wish everyone out there a safe and healthy 2010. We are in the process of redesigning this site and would be grateful for any feedback from you as to how we can make the site better and perhaps a bit more user friendly. Please go to the forum to leave your thoughts.

I like Christmas, I do, at least I think I do! Presents are more or less bought and good old Mr. Tesco is coming like a blue and white striped Santa Clause on Sunday. As always though, there is the annual problem of making the day special whilst not bigging it up too much that the kids can’t cope with it. Take Sunday for example. The Christmas tree was bought, the lights put on and the decorations brought down from the loft. Within half an hour, the tree had fallen down thanks to Michael 'helping' to straighten an already straight tree! Within three quarters of an hour all the decorations were put upstairs and the activity aborted for the day as the sheer excitement of everything had become too much and was definitely not peace and goodwill to man! What to us is a fun time can very quickly degenerate into sensory overload and complete hell for our children. This year, thank goodness, we are on our own for Christmas day itself which I am soooo looking forward to. Even though relatives are fab, there is always that extra pressure, those extra cups of tea to make and just more stuff which always seems to add to the muddle. This year we may do a roast or we may just do sausages - we're going to wait and see how we feel. If we want to spend the day in our PJ’s we will and if Michael wants to walk around in the nude, then so what! We all want to have a good day and make it special, but for our two at least their definition of a good day is a bit different to others!
Have a lovely Christmas, whatever you do, and Special Families would like to wish you all a safe and stress free 2010.

We have all just come back from an absolutely lovely break in Devon over the half term holidays. The weather was smiling on us and the children were great. Before we had the kids, we would never have considered going back to the same place, but this little corner of North Devon is our little sanctuary which we have gone to for the last four years. Its familiarity is reassuring for the children and makes the whole experience that more fun and relaxing for everyone. Interesting that Michael’s stress rope (whenever he gets nervous he starts roping off random areas ) stayed well and truly in his bag. Michael fell in love with Harry the pony and Elise has got a real liking for the chickens there (and guess what each have asked Father Christmas to bring them!) The whole farm is a great place to forget about the real world and wrap ourselves in a cocoon of soft fluffy normality of our own making.

One incident - isn’t there always at least one! - however brought an injection of reality into proceedings and made us both question how much we have actually dealt with coping with our children’s disabilities. Next to one of the beaches that we went on was a play area next to a café so we decided to stop off there on the way back to the car. Mistake. Michael is a stickler for the rules and stated shouting at the children who were walking up the slide rather than going up the ladder. He had no understanding of social cues and intruded on others playing, trying to impose his game on them. Of course, the children reacted and started answering back and even though Michael was blissfully unaware of what was going on, it was quite upsetting. We know that our two are not ‘normal’ but it is incidents like this that really hit home how different they are. All of the children that ours normally play with either have special needs themselves or have known Michael and Elise for years so are used to their little ways. This foray into the normal world, full of people who are unused to our two, Michael in particular, was a sharp wake up call to what may lay ahead of them in years to come. Also, it made John and I realise that perhaps we have not really got our heads around the whole integration thing as much as we thought. It suddenly dawned on us that we continually and subconsciously steer our family away from social situations especially those which involve other children. On one hand this works for us, and why not, but on the other, this is not real life. Should we try and integrate our children, a process which involves a certain amount of risk especially in terms of self esteem, or do we cocoon ourselves away avoiding any possible confrontation but not exposing our children to the knocks of life? I really don’t know.

It is often said that finding out that your child has got additional needs is akin to going through the bereavement process - a state which can take some years to accept and for others can never be resolved. When I take time to look back, I sometimes wonder how we ever got through the day. No time for self-indulgence, as we were still faced with a beautiful little boy to care for and love, but the struggle to avoid bursting into tears continually and the sheer effort to face the day was overwhelming. Michael is now eight and as a family, we have definitely moved on, albeit down a very different path to the one that we expected. Normality has gone out of the window and is classed as 'boring' in our household! Traumas which others would be flapping about are path of the course which in themselves have lead us to have a massive appreciation of all the little things that are otherwise taken for granted.

Despite this, have I really accepted the fact that our son and now our daughter do not fit into the normal mould of society - a fact which is inevitably going to make their lives pretty difficult at times? The honest answer is no. not really and I don't know whether I really can. Feelings of anger, guilt and injustice are still overwhelming at times all compounded by the sheer frustration that there is nothing that I can do about it. One way that I have managed to cope with these feelings is to completely pack out my days, not giving me time for thought or anger. As well as bringing up two children with complex special needs, running a house and all the usual stuff, I have also in the past year done an OU course, been a befriender for Face 2 Face, volunteered two days a week at Michael's school, helped with the RDA and done a 17 week Webster Stratton course! Oh, and running this web site! Not until the school holidays started, and everything was put on pause, did I realise how busy I had been, how some things such as Special Families had suffered due to overstretching and how much I had been burying my head in the sand. Hate to say it but the holidays were a welcome rest and allowed me a great chance to reassess.

Anyway, the kids are back to school (how quiet is the house!) and things in my life have been significantly pruned! For the first time in a long time, I am having 'me' time and even though more time means more thinking, facing up to things is part of the process, I guess. Apologies for the lack of input into Special Families recently, and thanks to everyone who has continued to support this site - things are definitely going to pick up now! I once saw a cartoon in a newspaper that said "I am not sure whether I am running towards or away from something". Still not sure, but I am determined to keep running, whichever way life takes me.