Autism and running

I have three daughters, the youngest are identical twins. Quite early in their formative years it was obvious they were not developing as quickly as we expected or anywhere near the rate of our eldest daughter. Many year later we finally got diagnosis of autism in both of them. We have had a huge fight getting the right education and it has been extremely stressful.

Initially, it was easy to turn to drink to help cope but that is just a vicious circle. I have always run and realised that this was the best way to cope. I always feel better after a run whatever the situation with the girls.

Does anyone else have a similar story?

Hi DS2.

Hope you have managed to get the right schools for the girls.....the right setting can make so much difference...........my youngest and eldest are both on the spectrum...all three of my kids ended up in different schools but each school has worked out for them...... but as you say its a long hard fight sometimes.....but worth it.

i never managed to find running when they were younger...........but when my eldest went to residential school in 2005 it left a bit gap in my life as he was home most of the time prior to that..............and thats when i started running.............has helped me achieve a hell of a lot more than i thought i could and given me experiences and friends to be proud of.......... and i'm not just a mother anymore

good luck

Hi Seren nos - I've met so many people that have children affected. I think it's hard to understand what it's like until you have children on the spectrum.

All three of ours now go to different schools which they seem to be coping with ok. The eldest twin only got properly diagnosed early this year. It was heartbreaking watching her struggles. The local education authority wouldn't listen to any professionals and even though we were told when they were about 7 they wouldn't make mainstream secondary school no-one listened.

It became a real battle. In the end they couldn't bully us. I told them they were 'institutionally corrupt' and if they wanted me to stand up in court and explain why I would. Our barrister told us we would win and they realised ours was better then theirs and they conceded.....

Anyhow, Mia (the older twin) has started at a fantastic school only last week and seems to be doing well. As I'm sure you know yourself, we're not getting carried away and taking it one day at a time, but things are promising. The other twin settled into a specialist unit at a secondary school only 5 miles away and is doing well so far.

Luckily both schools are driveable and the LEA now provide cabs so we are getting our lives back......

I was a runner prior to having kids but the time fighting these things made it hard to really commit to it so I just ticked over really. I have run marathons in each of the last two years and am now training hard with an aim of sub 3:15 next spring.

My wife is probably feeling a bit how you felt back in 2005. She has never stopped chasing around after the girls and feels a bit redundant. Luckily she is a gym goer and this has also been her salvation.

There are a lot of very good people out there. I don't know what the future will hold - as I'm sure you don't - but do we know for any of our children? I ran my marathon last spring and got talking to a lady who taught SEN within a mile of the start and we ran most of the way together. We shared so much during that run about our respective families. There are so many good people who run.... I'm glad I have it!

How old are your kids now? Where did/do they go to school?

My eldest is 19 and was in and out of school until 11 when we fgot him into a specialist residential school run by Action for Children.........no other schools would take him as any anxiety led to big behaviour problems........he is no 19 in college doing very well studying equine stuff and doing the professional excams and working part time.........an amazing transformation........never ever would believe it when he was 11...........

the youngest went to a junior school with a unit attached and slowly got more and more into mainstream.did so well in year 6 that he went a mainstream secondary with support.the school is brilliant and he is now nearly 16 and taking 12 GCSE's next year.......started doing a loot more social activities as well....

middle son is in the local welsh school.........

I can't believe how things have progressed since they were young and mainly as a result of getting the right school placement for them.........so i advise all parents to try and fight as hard as they can for the places.even though at the time you are just exhausted from everyday living........

Wow - what a fantastic turnaround. I'm hoping the same for my two. At Junior school it was the younger twin, Emily, who had the behavioural problems and as a result she got diagnosed early. However, the authority played there rediculous games and we got nowhere. In the end they both started secondary school last year but both had huge problems from the start. We met again with the authorities and I gave them an ultimatum. I told them I was past arbitration since it was purely 'arbuitrary decision making' on their part and told them I wanted to go to court. It knocked them for six and within weeks things started changing.

We chose the school because it had a specialist ASD unit attached and the school ended up helping and putting both girls in the unit. Emily settled well, but Mia hated it and her behaviour got worse and worse - sounds like the same for your son - brought on by increased anxiety.

We heard about a specialist school in Sevenoaks which is 35 minutes away and we went there and it seemed perfect. It was Princess Diana's old school and now owned by Mohammed Al Fayed (long story). They are part residential as well but Mia can commute.

Early days but things are looking good. I said to my business partner over lunch today that this has been the easiest week of my life since 1999. They were born 4/1/2000.

I pray it will continue. I'd love to hear of the continuing successes with your sons. It provides me with hope.

Good luck!

DS2 - I know we've chatted about this on another thread but I just wanted to check in here and say I think its great that you are getting so into your running at the moment and I'm sure it helps you cope.  

Your twins are 10 days older than my son.  Did everyone expect your wife to produce on 01.01.00?  It drove me insane.

Good luck with everything - kids, running etc.  I'm sure this will be your year. 

Hi Minni - thought you may be interested to know that we had a call from my daughters new school last night to tell us that she had settled really well and was learning at an incredible rate. Shows the benefits of specialist education for those that need it.

Hi DS2, have you read the book 'Grace Under Pressure' by Sophie Walker? Sophie ran the London Marathon this year for the Autistic Society as her daughter Grace has Asperger's. As well as running and training, the book covers about how they both dealt with the schools, teachers, classmates and local authorities to get the support needed. She also has a blog www.courage-is.blogspot.com

Hi Xine267 - no I hadn't but will pick up a copy. My wife will be really interested in that as well. I might buy it 'for her' for Xmas!!!

I will, also, look up the blog. Thanks for the heads-up.

good news on the scholl progress .hope it continue  

My pleasure, DS2, I hope it helps. I bought the book after reading Sophie's interview in the Guardian last month, it was really inspiring stuff. Made we well up quite a bit too!

Best of luck to you all

Thanks seren nos - let's hope so. I have been really encouraged by the stories of success shared on here. I have better hopes for their future than I have had for a while. Thanks for your input

Xine267 - as I've said on here before, there are many, many inspiring people in this field. It's great to know that we're not alone and these forums have become a good outlet for me. I will definitely get a copy of Sophie's book.

Xine267 - just read some of Sophie's blog. Just the intro had me hooked. I may pop in Waterstones tonight and pick up a copy.

its really interesting to hear your sucess so far with a specialist school even though its been an awful journey. My Nephew is autistic and is 12 but lives in Hong Kong, he in a mainstream school in which they dont support his needs. My sister in law is having to move back to the UK just for specialist schooling for Joshua, leaving my brother and her 15 year old daugher in HK. They are having to pay for the schooling though as he hasnt been statemented...its just pulling the family apart and heartbreaking to watch......I will pick up a copy of the book and forward it onto them....if its had good reviews from real people then its worth a read!!!.....

Thank goodness for specialist schools, I will look at sevenoaks, as they are looking at and have had a trial at Slindon, but they will move to wherever the best school is.....Fingers crossed your good week turns into another good week next week....its just about taking each day......but thoughts are with you.....and your gilries.....xxxx