Parenting from a special Perspective: Life with ASD and the rest

12 June 2017

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 Helen.

1. When did you first realise your child has autism?

We realised that my son had atypical autism shortly after he started Reception at school, and his behaviour at school quickly deteriorated to such an extent that he was at risk of exclusion before the Christmas holidays. We knew that there had to be something causing this behaviour, as he did not behave the same way at home.

 2. How did you feel when you found out that your child has autism?

It as a mixture of guilt, sadness and relief.

Guilt, that we had not noticed sooner or tried to get help sooner. Sadness, because I felt that the hopes and dreams we had for him would not come true. Relief, because there was a reason for his acting out and it was not down to a lack of our parenting skills.

3. Where did you first turn for help?

We first turned to our doctor and medical professionals to get a diagnosis, and understand more about my son's needs. Within just 6 months we had spoken to over 12 different professionals in our search for answers, however none of them could advise us on the best support to help our son as each child is different and the strategies that work for one child might not work for another.

4. What advice would you give a parent who suspects or has just found out that their child has autism?

Connect with other parents and families who are going / have been through, so that you have a support system in place to help you navigate through the many twists and turns involved in trying to get an autism diagnosis and the necessary support to meet your child's needs.

With so much information to absorb and so many potential challenges which need to be faced, these parents and their collective insights and support can be a life-line which keeps you going through the tough times.

5. What exactly is autism? Did you know what it is when it was first diagnosed?

Autism is lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them. There are different types of autism, which is why it is referred to as a spectrum condition, and it affects each person differently. Autism also often occurs alongside other conditions such as ADHD, sensory processing disorder, dyspraxia, and dyslexia.

Atypical autism means that my son shows most, but not all of the symptoms of autism. A more accurate description for the current understanding of my son's autism is - atypical autism, with social communication issues and demand avoidant behaviour.

I didn't know much about autism when my son was first diagnosed, and I am still learning about it two years later as we learn more about my son's particular needs. 

You can find out more about autism from the National Autistic Society

6. What are the biggest challenges facing your child and your family?

One of the biggest challenges currently facing my son and our family is my son's need to control the world around him, and his difficulties is being able to see things from another person's perspective. In particular this prevented him from accessing education as he refused to take part in lessons as he was resistant to learning new things, and it has made it difficult for him to make friends.

This need for control often causes anxiety for my son when things don't go the way he expects, and is very tiring for everyone else around him. We have made great progress in the past few years, and his need to do everything his way is slowly changing.

7. What has been the greatest help for you, your child and your family in overcoming these challenges?

Knowledge. The biggest help for us has been the increased insights and understanding of why my son behaves the way he does, and more importantly the strategies that we can use to help him on a daily basis.

Each week we learn something new about his needs, and how to support him. Currently he is learning about the concepts of personal space, how to engage in a conversation, and the fact that people can have different thoughts about the same thing. These are not things that my son intuitively understands, so we need to work with him to ensure that he can learn these life skills.

8. What has surprised you the most about raising a child with autism?

The personal impact that it has had on me. The last 2 years has been incredibly tough at times as we struggled to get my son the right support at school, however it has also opened up my world and allowed me to connect with other people in a way that I haven't done before.

I now spend more of my time at work meeting up with people to understand how things are going with them, and the insights I have gained through helping my son has allowed me to help others through their own challenges. I never anticipated that my son's autism would help me connect with the world around me.

9. What’s the main bit of/the best advice you’d give another parent who has a child with autism?

Don't give up, and find people to support you during the moments when you are struggling.

There were times when I thought that we would never get past the daily behavioural incidents, and being called into school to talk about how challenging my son was being in school. Times where I was frustrated by a lack of information or knowing what to do. Times where I felt that I was battling against the impossible.

We are starting to turn a corner and I can see the progress that my son is starting to make. Whilst the difficult times are not all behind us, I do feel that we have enough of a support network now to carry us through the next challenging moment.

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 that parenting works best when you follow your instincts and allow your parenting style to develop to match your child's needs. Sometimes this means taking the time to work out why your child is not behaving in an expected way, rather than focusing on the behaviour that you can see.

Helen is working mum with a young family. She blogs about finding her way through autism, special needs eduction, anxiety, demand avoidance, and a life-work balance at Life with ASD and the rest. She also hosts the ASD and SEND roundup a weekly roundup of blogposts and articles. I am over the moon that Helen found the time to take part as her blog is one that inspired me at the very beginning. Thank you Helen.

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