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 Kelly to Diary of an Imperfect Mum.
Kelly blogs over at It's a Tink Thing a blog about her daughter, Tink, and their life with autism.
This blog is my way of dealing with the craziness of my mind and our life right now…
1. When did you first realise your child has autism?
We knew Tink had issues with her speech and communication, so asked for a referral to a speech therapist, which she had when she was coming up to 2 years old. It was the therapist that first mentioned autism. It hadn't even crossed my mind at that point.
2. How did you feel when you found out that your child has autism?
At that initial SLT appointment, in denial. It wasn't autism. She was waving, not flapping her hands! She wasn't looking at you because you're a stranger. She wasn't doing as you ask because she's so little! As time went on we saw a paediatrician (who agreed with the SLT) and then an assessment at the Child Development Centre. By this time, I had learnt more about autism and realised that it was the most likely explanation for Tink's behaviours. So when we received the diagnosis when she was 38 months, we had pretty much come to terms with it and were relieved to get a diagnosis as it meant we could move forward.
3. Where did you first turn for help?
I joined lots of groups on facebook and also found a local support group to go to for advice, tea and hugs! Actual help from the 'professionals' was not really forthcoming; we felt diagnosed and dumped!
4. What advice would you give a parent who suspects or has just found out that their child has autism?
Don't panic! Autism can be bewildering but it can be beautiful. It can be incredibly hard work, but so rewarding. And find your 'village' - a group of people who can support you and your child. It may be family, friends, teachers or strangers in a facebook group, but you WILL need somewhere to turn when times are tough.
5. What exactly is autism? Did you know what it is when it was first diagnosed?
Autism is a spectrum disorder/condition (depending on your preference - I don't like either!) which primarily affects the way a person communicates andinteracts with others and the world around them. It's a lifelong condition and presents differently in each person. I knew vaguely what it was before Tink's diagnosis, but had a lot of preconceptions based on autism as presented in the media. I went on a course through my work just before Tink was diagnosed and it really opened my eyes - and confirmed to me that this was what we were dealing with.
6. What are the biggest challenges facing your child and your family?
An unknown future! At the moment, we have know way of knowing if Tink will ever be able to live an independent life. That scares me. In the short term, we are having issues with education - making a decision about the best place to school Tink is proving very difficult!
7. What has been the greatest help for you, your child and your family in overcoming these challenges?
For us as a family, it's having supportive people around us; my parents are a fantastic help and we have friends with whom we can talk about things. For me personally, I have found blogging very cathartic. It helps to get things off my chest so they don't build up in my already stressed and anxious mind! And to know that by sharing my experiences I am helping others - I often get messages telling me this.
8. What has surprised you the most about raising a child with autism?
How much joy she brings to our lives. We have our challenging moments, but she makes me smile every single day. When we first considered a diagnosis of autism, I wondered what life would be like, but do you know what? It just carries on and you roll with the punches, get up, dust yourself off and carry on!
9. What’s the main bit of/the best advice you’d give another parent who has a child with autism?
Arm yourself with information and be prepared to battle! You are your child's best advocate, you will be their voice for some time to come. There is still a long way to go until autism is completely accepted by society, and you will more than likely have to fight for your child at some point.
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
I have learnt to be a LOT more tolerant and accepting of others! Having a child with autism has really opened my eyes to others' behaviour. I no longer tut and roll my eyes if a child is screaming in the supermarket, but instead, I consider that that child may be experiencing sensory overload and not coping. I have learnt that children with special needs are just that - children first, and they have just as much, if not more, to offer as any other child - we can learn such a lot from them!
I absolutely loved Kelly's answer to number 9 and I could not agree more, there is a massive difference between awareness and acceptance but with people like you around writing such great posts we will get there! Thank you so much for taking part in the series.