Life truly is a voyage. Sometimes it seems the flotsam and jetsom we pick up along the way is there for a reason. In my 20s I worked with adults and children with additional support needs. I loved my work it was tiring demanding at times but I had my own life outside work. I am ashamed to admit but I wondered why the parents who sent their children to respite found them challenging. It wasn’t until I had my own bairns that I learned how difficult things could be with a neurotypical child never mind one who needed extra support. I have to admit I loved most of Lindsay’s babyhood and toddlerhood she was my wee pal and we went everywhere together When Lucas was born with physical problems I entered a new world of medical terminology and having to work with professionals. Maybe because his physical needs were at the forefront I wasn’t too worried when he was behind with his speaking and communication but when the terrible two’s became the turbulent threes I raised my concerns. Like many mums I wasn’t listened to his physical disabilities were seen as the reason for his behaviour. When he started school I found myself having to battle on his behalf especially about school and to get a diagnosis. Finally after the intervention of Mig at mindroom Lucas was formally diagnosed by Christopher Gillberg at the age of nine. I felt relief but also sadness diagnosis affects parents that way. As he is growing Lucas has turned into an amazing beautiful clever boy who I love so much. He requires so much support though that he is hard work. Like most parents I worry about is future.
Then there is Callum or Callybally my wee surprise. He was the perfect baby who was content to play on his own. The only thing I noticed was that he hated baby massage classes. He disliked being touched but loved being swaddled. As soon as he had head control he began to rock He still does it in fact. He was my blue eyed perfect boy though who I loved. He went for an assessment at the Panda Centre our early intervention centre mainly because of Lucas and on this day I thought he would be discharged. He went round the room banging his head on the wall I remember telling the paediatrician not too worry as he did his in new places. Then came the words, “I think he may have autism”. I really hadn’t thought of that. Callum was lucky an early diagnosis meant a specialist nursery place in the wonderful Snowdrop wing of Springbank nursery. It used to be for communication disorders but is now just a specialist provision. From there he got a place in St Paul’s communication disorder unit where he continues to thrive. He is musical, has perfect pitch, and is a wonderful funny wee boy who still has his issues but is blossoming and that is what I wish for every person who lives with autism that they get the support they need to shine.
Things are becoming more difficult for people who live with autism The cuts are impacting on school and community care. Services which people with autism need to find their place in the world. Families are becoming more stressed as respite and other supports are being impacted on. Some people with autism are having to face ATOS assessments and are found fit for work as the old tests are not geared up to take into account the needs of people on the ASD spectrum. I think too that the propaganda of the Condems mean that more people with more hidden disabilities are becoming more stigmatised. Hate crime against people with disabilities are on the rise. People may be beginning to show more understanding of physical disability but there seems to be less understanding of what it means to live with autism. Read the Daily Fail and lean autism is just bad parenting. It is not Autism is a neurological disorder which science is beginning to demonstrate starts before birth. My boys and I have a rare chromosome disorder a microduplication on 1q21.1 which has been linked with autism and other conditions.
Today on World Autism Day I want to pay tribute to all the amazing people who have helped me. I have learned most from other parents who somehow find the time to share their knowledge and humanity. You all know who you are.I have also met some amazing folk who live with autism who have shown me how the world looks to my boys. You are amazing role models. Thank you for being there. So on International Autism Awareness Day look at my beautiful boys and don’t just see them as autistic that is part of them but there is so much more to them look beyond the labels. My wish for everyone living with autism on this day is that we neurotypicals can learn from you and change the world and make it a better place for everyone especially all of wonderful you.