It’s the end of a strange year for many people. A year of shake ups and change for everyone.
I think we dread endings of situations that have been good and are instinctively nervous about changes. We had a change of tutors in September for our youngest son’s ABA team and lost two wonderful girls who had contributed so much to Marcus’ life for the past few years. I am not sure who misses them the most, he or I. Running an ABA programme can be stressful in itself and finding, training and keeping staff is one of the biggest headaches. The benefits of ABA can be immeasurable in many ways although there is a lot of data kept which does track and measure very real progress.
For those who haven’t heard of ABA (Applied Behavioural Analysis) I can try and describe it as an intensive system individualised to each child which teaches communication skills (in our boys’ cases this was speech) managing behaviours (of which our boys had many ranging from refusing to follow instructions to full scale tantrums) social skills in order to be able to make friends and mix happily within society and play skills. It also includes anything else which the child may need like OT and of course integration into school and differentiation of academic work in the classroom. It doesn’t try to change a child’s personality or hide their real selves, rather it seeks to bring out and enhance what is there hidden by the veil of autism and to maximise each child’s potential. It is not a cure but in all of our boys, it has transformed their lives way beyond all original expectations.
Children with autism find change hard, they like routine and familiarity but life as a child brings with it many changes. We as parents and mentors need to make those changes as easy as we can to help our children to be able to adapt to them. There are always new beginnings and new people who come into their lives and I have to try and embrace those changes too so that I can help the boys to cope. Sometimes I find it hard to lose wonderful members of staff, whether tutors or carers and hope that the boys are not finding it as hard as I am. We are always grateful for those who have been sent our way to be part of our chidren’s lives and many of them are still in touch and visit regularly which eases the loss.
I had my first book published this year A Parent’s Guide to Coping with Autism which was a huge personal achievement. For the past 17 years, my life has been devoted to my boys and their achievements but this year, it was finally my turn too. The book is slowly gathering momentum and starting to reach those who it was intended for, offering hope and support to other parents and an insight into autism and it’s impact on families to others such as teachers and the wider public. It is not a memoir but more of a hand book combining both practical and emotional advice alongside personal anecdotes to illustrate points.
All my learning has come from my experiences with my four boys who have taught me so much and continue to inspire me with their progress.
Next year will be a challenging one for us as our older boys turn 18 in two months time and there is a huge transition process to adulthood. We will try to make it appear easy to our boys and shield them as much as possible so that they won’t be so anxious about the big changes on their way. They have been at their current school for the past 7 years and know the teachers there so well so again it will be the change in staff who look after them that will be the hardest part of it all for all of us.
As the song says ‘All I want for Christmas is You’. We need people, not presents.