Caroline and Farrah
My name is Caroline Seyedi and I have a daughter who was diagnosed with Autistic Spectrum Disorder (ASD) at the age of two. She is now 17 years old and has amazed professionals and us with her progress because her prognosis looked very grim in 1997.
Farrah was diagnosed in 1998 with ASD. No-one knew much about autism and as you may understand, we were devastated. The prognosis was bleak because no-one could tell us how to manage or 'treat' it. Despite the 'label' of ASD, Farrah was displaying all the behaviours of classic autism; no language, hand flapping, rocking, no eye contact, repetitive restricted behaviours, did not play appropriately with toys; just lining them up; even my ornaments placed around the living room ended up in a line on the sideboard most days!
After a while, when I came back from the shock and devastation to reality and realised I had to do something, I started to research the best I could without today's Internet technology!
By the time Farrah started school she had been involved in nearly every intervention known about back then in some form or another and I had stayed with her throughout each and every one to learn what was being done and why and how it was supposed to help her. I used them every day in our natural environment and incorporated them in to our everyday life as and when communicating, interacting and disciplining Farrah. Yes, I say 'disciplining'...a child with autism needs to know their boundaries as much as, if not more in fact, than a child without autism. Also, as a parent, my personal feelings were that it was not fair to allow our daughter to do something her older brother, by two years, was not allowed to do.
Unfortunately, when Farrah started school, our local mainstream infant school knew just as much about autism as we know now about life on Mars! Needless to say, it was a very difficult, stressful and upsetting time for all concerned. Subsequently, after trying for a year of part-time at the mainstream school, as they wouldn't take her full-time, we moved her to an autism resource base (ARB) which was attached to a mainstream school for the remainder of the 'part-time.' This turned out to be the best decision I made for her education and when she was due to move to the juniors of the mainstream school, I decided enough was enough and sent her to the ARB full-time. Here she was understood and could be helped to communicate, interact and play appropriately and the academics could be taught once the behavioural and sensory issues of the autism were being managed and she was able to learn.
Farrah thrived in the ARB and by the time she left at age eleven had achieved just as good SATs results and some better than some of the children in the mainstream school in Maths, English and Science, much to our delight! She was talking and interacting, being included in the mainstream school for some lessons and even took herself off to a mainstream maths lesson after morning break one day!
Following Primary School she went to a newly purpose built autistic centre attached to a mainstream secondary school. She did well there as well and left with Entry Level exams in English, Maths, Science, ICT, Food Studies, Child Care and a BTEC Level 2 in Dance...she had been attending a dance school and had learned freestyle disco and street dance so, she had been included in the mainstream secondary school in the BTEC Level 2 Dance Class and had the relevant support for the written part of the exam.
Now at 17 years old she has surpassed my wildest dreams... Farrah is a happy, sociable loving teenager who loves and competes in freestyle disco and street dance and British Gymnastics Trampolining.
She is in the British Gymnastics Trampoline disability performance squad for Team GB 2012 ... Something I could never have even dreamed of when she was little, displaying all the signs of classic autism!
I have had nearly every experience imaginable bringing up my daughter and I know I will never stop learning as she moves from being a teenager in to adulthood but I am much more confident now, that she will be more independent than I could have ever wished for...
...We have climbed over that rainbow which we thought we would never climb and now I want to help others climb it too... I am now an Autism Intervention Specialist and Parent Consultant (www.copingwithautism.co.uk)
'My daughter still has autism BUT autism no longer has her!'
Alex and Marcus
Alex has persuaded his friend Carl to take part in the Deca Enduroman event in aid of ART.
“Marcus is 6 years old in August and he is autistic with some speech and language skills. However, these are limited to yes and no answers or short phrases. He attends a special school and has done so since he was diagnosed age three. As a further intervention he is on a gluten and casein-free diet and has protein (vitamin) and essential oil supplements.
Marcus lives with me, Dad, and Mum, who are divorced. As his Dad I enjoy a great relationship with my boy, he is fun loving and affectionate and he will often seek cuddles. He likes to spend time playing with me or likes me to be in the room or close by. He loves to play rough and tumble or ride a bike and enjoys being outside a lot. I tend to structure weekends or holidays with activities, such as frequent visits to LEGOLAND or the seaside. He also enjoys seeing his three cousins who are brilliant with him, very patient and loving. I feel Marcus is very loving and although his language is limited he does seek affirmation and reassurance, looking for my expressions by sometimes holding my face to make me smile if he thinks I am grumpy.
At times it can be difficult when he is in what I call a dreamy mood. He will stare into middle distance with his head on one side and is very difficult to reach. He will self-comfort by hugging a pillow for some time and talk to himself or make a range of noises. He does get angry or upset although this is infrequent particularly if I give him time, space and warn him of upcoming events such as lunch, going out, or bed time. I also ask him often what he wants to do (or show him pictures of choices).
What can be frustrating is sometimes you get a bright spark for an hour or two when he is very alert and attentive. His language will switch on and it feels for those moments as if he is with us. I try to give Marcus exclusivity when I am with him and although it can be tiring, he is at his best when I can focus on him. Marcus is very good on the iPad, in fact it gives him a huge amount of freedom. He has games, films and can surf YouTube for trains or roads signs (you wouldn't believe how many people have posted trains on YouTube.)
Marcus likes trains, Wallace and Gromit (A Grand Day Out), road signs, lines, roads, Shrek 1 and 2. He does not like baked beans, hand-dryers, Starbucks !!
Despite his autism I feel he is a great blessing...”