Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs.
Welcome Danielle to Diary of an Imperfect Mum.
I am Danielle and I am an ex-English teacher living on the Gloucestershire/Worcestershire border. I have two children, a boy, aged very nearly four, who is on the autistic spectrum, and a daughter, who is nineteen months.
1. When did you first realise your child has autism?
Summer 2015. Nursery called us in to discuss what they called ‘some concerns’. E was just two years and nine months at the time. It came as quite a shock, even though in hindsight the signs were there.
2. How did you feel when you found out that your son has autism?
My world ended, for a little while. I didn’t take it very well at all. I am not sure why – maybe because it was so unexpected. I have come a long way since then.
3. Where did you first turn for help?
I actually phoned the National Autistic Society’s helpline first. They were absolutely lovely and gave me lots of advice and numbers. Then we went to our GP to get things started from a diagnosis and therapy point of view.
4. What advice would you give a parent who suspects or has just found out that their child has autism?
That’s a difficult question. I was so desperate for assurance that everything would be ok when we first suspected that E had autism – but it took a long time for me to accept it and feel normal again. But you do feel normal again. The world carries on and you adapt and learn how to help your child. Life is as full of joy and anxiety as it is for most parents. I would want to try to give them that sense of reassurance.
5. What exactly is autism? Did you know what it is when it was first diagnosed?
Autism is a lifelong developmental disability that affects how a person communicates and how they relate to other people. It can also affect how people perceive sensory input and the world around them.
I did know a bit about autism. In fact, I thought I knew a lot. I am a teacher and even based my teacher training final project on some students with autism. But experience has taught me what bare facts never could. It is only through living with an autistic person, day-in, day-out, and loving them, that you can truly begin to have some understanding. This is why it is so important that teachers and professionals listen to autistic people, and their parents – if they are too young or unable to fully speak for themselves.
6. What are the biggest challenges facing your child and your family?
Rigidity is the biggest problem for us – and the meltdowns that ensue from not being able to make the world fit our son’s rigid expectations of what it should be like. He generally copes well with planned changes, if prepared well. We cannot shield him from the unexpected all the time and when we can’t it is as though his heart is breaking.
The other difficult part is making sure he gets the help he needs. Over a year on and we still only just have referrals for therapies coming through. He needs constant one-to-one support at nursery, and yet the funding that he needs and should be entitled to never comes. It can be very frustrating.
7. What has been the greatest help for you, your child and your family in overcoming these challenges?
Time, patience, understanding and trial and error really. The professionals we have been in touch with always have helpful suggestions, but ultimately it is our relationship with our son and tuning into his needs, that helps us all learn how to cope better.
8. What has surprised you the most about raising a child with autism?
That it is not a tragedy – in fact, it is the opposite. My children are the greatest joys in my life, both autistic and neurotypical. I wouldn’t change either one of them for the world.
9. What’s the main bit of/the best advice you’d give another parent who has a child with autism?
To have the confidence to believe that you know your child best, to never let anyone deny them the treatment they deserve, and to be prepared to fight for them at every stage of their education and development.
10.Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
Before I was the parent of a child with special needs, I was complacent and even a bit smug. I thought I was unprejudiced and empathetic but because I thought I was already these things I didn’t realise how blinkered my view was. Having my son has made me a better and more understanding person.
You can read more from Danielle over at her blog Someone's Mum where she blogs about general parenting topics, her experience with autism and issues surrounding education and teaching. Danielle always write passionately beautifully written pieces that give us a real insight into her life.
Thank you Danielle for agreeing to take part in the series.