Parenting from a Special Perspective: Upside Mum

14 November 2016

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 Emma. Emma is mum to two boys: J (6), B (4) and her baby girl W (1). Her eldest son J was diagnosed with autism aged 3. She is a primary school teacher who likes to read, drink wine, watch crime drama and is currently more than a bit addicted to Instagram.

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

We had been monitoring J's development since he was a new baby due to his difficult birth and what unfolded in the days afterwards. As a result we were attending outpatient appointments with a paediatrician. We noticed he wasn't reaching milestones like sitting up and crawling at the recognised ages. When he was two we were more aware that he wasn't developing language, making eye contact and was displaying some repetitive behaviours. We officially found out when he was 3 years and 2 months old, though we thought it was the case for a while before this.

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

Although we had expected the diagnosis and it hadn't come as a big surprise, it's strange that it still came as a big blow. It was a bit like having part of his life and future ripped from us before it even had the chance to begin. We were also told he had a Global Developmental Delay (which includes Autism but is more than Autism alone.) Although I knew what they were going to say I still cried when I got back into the car, all that night when I got home, on and off for a few days afterwards and again when the letter with the official diagnosis arrived. There's no history of Autism in our family either so we knew very little about what to expect.

3. Where did you first turn for help?

I was quite surprised by how little follow-up help was on offer. What was available mainly came from charities. When we were at the meeting to assess J and given the diagnosis, I was handed a few leaflets but that was it. I first spoke to my Health Visitor, who was wonderful, and asked her to help us. She was so helpful and went away to find out what support we could get to help J's development. She was able to help us apply for an early nursery place before the diagnosis too and support us in meetings and transitions. As J wasn't toilet trained and became too big for standard nappies, she referred us to the continence service to get nappies that fitted him as well. She was also a great source of support when we were fighting to keep him in mainstream nursery, when we transferred him to a language & communication support nursery because the mainstream nursery would not make the effort to support his needs and when we had to fight to get him a place in a suitable school near our home. I'm so sad that she has now left the NHS for a new job and we miss her a lot. At the moment we do everything for J and he gets no external support or input. Anything we do find out we do by ourselves.

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

If you are at the stage where you suspect your child has Autism, make sure you push for an assessment. Getting the diagnosis helps with getting support like nappies, speech therapy and a support plan for school, as well as other things you might need. If you already have the diagnosis, ask your doctor or relevant health professional about what support is on offer. If they are unsure, make them find out and go back and ask again as a follow-up. Look at local support services (usually charities) and find out if they have information evenings or open nights. If they have a support group, it may be useful to go along and this might help you to meet people who are in a similar situation to you and understand. I found that there was so much information online and it was hard to sort through it all. The National Autistic Society website ( is a great source of information in the UK and has links to other relevant services, etc.

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

This is something I thought I knew about, until it happened to us. It's a phrase I googled many times after J's diagnosis and ended up with my own definition, which is an amalgamation of others I found. It is a lifelong developmental disability, characterised by difficulty in communication, social interaction and behaviour. It can mean someone being unable to make eye contact, engage in discussion and follow social norms. It can also cause a language delay, repetitive behaviours and have other associated health issues. I didn't have as full a picture of what Autism was before J was diagnosed. He is termed low-functioning and in my experience as a mainstream teacher I had only seen children who would be termed higher-functioning.

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

J's inability to communicate his needs to us is a challenge for him and us. He tries very hard and we are getting more used to what he wants but there are times when we still have absolutely no idea what message he's trying to convey. He has begun to use PECS ( at school, though this is limited by having pictures available to express the need and his understanding of the pictures and how to use them. His vulnerability worries me, as he has no real awareness of danger or strangers, etc. He would walk out into the road if we weren't there to stop him. I worry that he will never have friends or any kind of meaningful interactions and relationships. His lack of toilet training at his age and size make it difficult to get him changed when we are out anywhere, as many places lack appropriate facilities. If places we go are overly busy or noisy he struggles to cope and can become very distressed. He's sensitive to certain types and pitches of noise. This can make going places at weekends or during our school holidays a bot more of a challenge or gamble.

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

Having my parents and family close by has been a great help. One of us would have had to give up work if we hadn't had my parents to watch J during the day. I don't think a childminder or private nursery would have been willing or able to cope with his needs. J is generally a very happy boy and I think it helps that he doesn't overthink things (unlike his younger brother.) I think it helps that we are mostly able to see what he enjoys and provide that type of activity for him. It means he gets lots of enjoyment from things and remains his happy little self.

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

The lack of understanding, awareness and readily available help & support was a surprise to me. You need to research everything and ask person after person before you get even a fraction of what he needs or should be entitled to. I was amazed at how much of a fight everything is. We have had to write many letters and emails, as well as having to phone so many people arguing his case and refusing to accept their first decision when it wasn't appropriate. I am thankful that we have the capacity to do this and it concerns me that there may be people who can't, who just miss out because no one is able to fight their corner.

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

Never underestimate what your child is able to do, especially if they are unable to speak. Don't let others underestimate them either or let them use their difficulties as a reason not to show off or accommodate their successes. J is non-verbal but he recognises every letter of the alphabet, all shapes, colours and numbers to 100. You would never have known this from his mainstream nursery report; where the highlight was that he could 'bang a drum with support.' Don't let anyone undersell your child because of their own lack of knowledge, ability to cope or tolerance. Always be prepared to fight for what they need and if you don't need to it's a bonus.

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've learnt to celebrate and take joy from the small things. It's given me a tolerance and understanding I never had before and helped me to take a step back and think before I act. I would never stare at or judge a parent who's child is throwing a wobbler and not doing what they are told. No one knows the cause and it's not anyone else's business anyway.

My favourite quotes to show what I've learnt are:

- Everyone you meet is fighting a battle you know nothing about. Be Kind, Always.

- Life isn't about waiting for the storm to pass, it's about learning to dance in the rain.

(I have no idea who wrote these initially but they are what I try to live my life by now and I found that they have helped me greatly.)

Emma writes a blog called Upside Mum where she talks about her daily life, adventures, experiences and the challenges her family face. I really admire how she always tries to look on the positive side of things and learn from her experiences to move forward. Thank you Emma for taking part in my SEND series.

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