Endings and Beginnings

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.

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A different Christmas

For years when the boys were little, Christmas didn’t really mean anything to them.

I have read a few blogs this week about how this makes the parents feel. As a young child with three siblings I loved Christmas. As a teenager, I no longer did due to our parents divorcing and arguments about who you would spend Christmas with. Choosing to spend Christmas with one parent meant rejecting the other in that parent’s eyes. Eventually as a young adult I did my own thing at Christmas with displaced friends.

So, I longed to have a family and recreate that special Christmas atmosphere again with my own children. I have collected Christmas decorations for over 30 years now . I used to design and print my own cards using my calligraphy skills as I did classes for many years, I even sold them at one point. All the trimmings of Christmas still meant a lot to me whatever the family circumstances were.

My twins were finally diagnosed at just three with autism. I say finally because they had never spoken and only the fact that they had glue ear had kept the diagnosis at bay.

Christmas with them for many years wasn’t really Christmas as I had imagined it. They didn’t understand what was going on, they certainly didn’t understand presents. How could you be given a wrapped present and not want to tear the paper off? And if someone did help you to tear the paper and you had a new toy in front of you, why weren’t you excited to play with it? So presents were received like a lead balloon; they didn’t want them. They had very limited playskills so toys were of little interest.

As for Christmas lunch – they were still eating pureed food at the age of 3. Crackers? they were just frightening things that made you jump when cracked. Father Christmas? How do you explain him to a child with no language? Why would you want to ‘talk’ to a strange man with a big white beard, quite a scary concept and as for standing in a queue to see him…

I know for many families with children with autism, this is the reality every year.

We now have four boys, all with autism and things have improved hugely since those days due to their acquisition of language which meant we could explain concepts such as Father Christmas. In fact, it saddened me hugely only last year to have to explain to my boys at the age of 16 the reality of the Santa myth as they were being teased at school for still believing. I have reassured them that stockings will still appear on the ends of their beds if they will ever get to sleep.

They still don’t really like presents. They can’t bear the mystery, the anxiety of not knowing what is in them. It’s not that they are impatient to know, it’s the anxiety that it might be something they don’t want or like. They write elaborate Christmas lists with precise instructions of exactly what they want. They need to know everything in advance. Occasionally I try to buy them something they haven’t asked for to help them with the  concept that surprises can actually be nice. if I get it wrong, then woe betide and  a child saying ‘sorry Mum’ , ‘it’s not exactly, precisely what I wanted’.

These days, they all eat normally after years of restricted diets and they love a roast dinner and as many crackers as I can buy. We now do Christmas on our own as a family and keep it as a day for the boys to spend how they want. We learnt years ago that other adults expect children to stick to their adult plans for the day and this just doesn’t work for us

We have our own special Christmas routines now. We go to see the Snowman on the Saturday afternoon before Christmas, it will be our 15th time this year. I first chose it as you need no language to follow the story and I used to put the video on for weeks ahead of the show so they were familiarised with the story. We are slowly introducing new shows to the boys but the Snowman remains a permanent fixture.

We have a party now each year for all our helpers, tutors, carers and anyone who is involved with the boys and shows them love and support. This is often one of the best nights of the year, to be surrounded by all those who truly care for them.

These days, finally, Christmas is as wonderful as I had always dreamed it would be.

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Never give up – you don’t know how far your child can go

One of my boys, Thomas, now aged 17 was diagnosed around his third birthday with classic autism along with his twin brother. He was non-verbal and had dreadful temper tantrums due to his frustration with having no form of communication. But he was at heart a very gentle soul and we knew this and had to help him.

So at 3, we started both boys on an intensive ABA programme which they continued full time (35 hrs a week)  until age 10, going into mainstream school part time with their 1:1 specialist tutors. They then progressed to a small inclusive special needs school.

Years and years of hard work by Thomas, his tutors and us has improved his life beyond all measure. There is no ‘miracle cure’ for autism but there is so much difference that can be made.

Thomas is now 17, he has language although not enough for him to be able to pass any conventional exams except one coveted GSCE in Art. He is happy, he is social, he loves life and everyone around him loves him for his enthusiasm and his gentle approach to others.

Several years ago, he took part in an annual school cross country race and although he came about 50th, it sparked a desire for him to learn to run. I took him to the local running shop who had an adult evening running group and that was the start of his love for running. He now runs 5 or 6 times a week, with a local club, the running shop and a very supportive local running coach. He has friends in high places and the running community has embraced him.

On Wednesday, his final ever schools cross country race, he did it, he won! 4 km’s on the frosty ground in Richmond Park in 14.09.

I don’t know who was the most delighted, I think Thomas was,  but I was the proudest Mother there, to witness my son achieving his dream. It was the first time anyone from his special needs school has ever won (mainstream schools also took part) and the Up and Running manager, Ricky was there too as he is every year to see his triumph.

Sometimes , our children get an obsession with something and are then so focussed on it. In Thomas’ case, it his running and his single-minded desire to win has paid off.

It may have been his final school’s race, but this is just the beginning of Thomas’ running career.

So never give up, our children are capable of greatness.

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Thomas – A Winner