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.
Lisa has been writing over at mrssavageangel for nearly three years. She is a stay at home mama to her 4 year old son Oscar. She lives with Oscar and her husband Ben in leafy Surrey. She writes about parenting, Oscar’s Autism diagnosis and weight loss.
1. When did you first realise your child had Autism?
I guess on some level I’ve always known Oscar was different. He refused to breastfeed, could roll both ways by 16 weeks and was walking unaided by the age of 10 months old. He played differently to his friends, either turning his toys over to look at the underside or lining up his beloved cars. But our first real worries came about when Oscar’s speech development was not keeping up with that of his peers. By the age of 18 months he would repeat certain words, but would not use them spontaneously. Shortly after 18 months he stopped doing even that. Everyone tried to tell me it was normal, that some children don't start talking until much later, but I just knew in the pit of my stomach that this was not a work-a-day speech delay.
I asked the HV to come and see him at 2 years old. She tried to fob us off,with the same ‘some children talk later’ guff but when nothing had changed a couple of months down the line I called her back and she referred him to a paediatrician.
2. How did you feel when you found out that your son has Autism?
Our first visit to the paediatrician was heartbreaking. He performed almost all of the tasks he was asked, but she was concerned about his lack of connection to her or the social skills toys. Towards the end of the appointment she leant forward and asked if we had heard of Autism. When we said we had, she said, though she couldn’t diagnose him on the strength of one meeting, we were “probably in that ballpark”. I was devastated. Properly broken. I had expected her to say he was too young to tell and to come back in a year. But she used the word probably not possibly. When she asked if we were surprised by that, neither of us were in our hearts, but it was still such a massive shock.
I took the news of his actual diagnosis 6 months later much better. I mean it was still super sad, but we knew it was coming and it meant opening up hundreds of doors to support it was blatantly obvious he needed.
3. Where did you first turn for help?
After we were told he was ‘probably’ autistic I was given a massive list of websites and resources to look at. It was well intentioned, but it was far too much and therefore pointless. I went to the NAS website, on the paediatrician's recommendation. It was the worst thing I could have done. Firstly there was too much information, I had no idea what I should be looking at, and secondly they are a charity, they fundraise, they have to talk about all the bad and the negative stats relating to people with Autism. And that was all I could focus on. It was too much.
I approached a friend instead, one who had two older autistic boys, in the hope I could ask the questions that meant something to me. And it was better, but it was also frightening as she was keen to tell me how much I was going to have to do for him and how much of a battle my life was now going to be. But this was based on her experience and it left me feeling alienated.
The best thing I found was a small Additional Needs play group that our local Children's Centre had just started running. It was a lifesaver. Although they weren’t Autism specialists, they gave me the time and the space to talk it out. I also met other mothers going through the diagnosis process, with children the same age as Oscar, which was great. It's like when you have a newborn, you want to hang out with other mothers of newborns. Experienced mothers are intimidating. That's how I felt about more experienced Autism Mamas!
I also tried to keep the probability of his diagnosis a secret from everyone and that was the worst thing I could have done. I thought if people knew they'd gossip about me, but when I finally told some friends they couldn’t have been any more supportive and I realised hiding what was going on was only hurting me. I also realised early on that I really don’t care what other people think of us!
If you suspect something is amiss, don’t let fear put you off talking about it with the authorities. You know your child and you know in your heart if there's something that needs investigating. Putting it off and hoping it’ll go away might work, but what if it doesn't? Wouldn’t it have been better to get the right people on your support team asap?
As a friend of mine (with a neurotypical child) said to me when I told her what was going on “well why wouldn't you get him all the help you possibly can”. And she was so right!
Post diagnosis I would say be easy on yourself. The first year (in my experience) is hard. So hard. The impact on you as a parent cannot be underestimated. The amount of services and people and forms that will suddenly enter your life can make your head spin. And when it all settles down you may be left feeling more bereft than you imagined. It took me much longer than I anticipated to even start to comes to terms with his diagnosis, but once I realised that's what was happening I started being kinder to myself.
Read blogs and books and whatnot by all means, but remember your child’s autism is theirs alone. You may not recognise your child in anything you read, and that's OK.
5. What exactly is Autism? Did you know what it is when it was first diagnosed?
Autism (according to the National Autistic Society website) is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.
I knew some about it when Oscar was diagnosed as I had a few friends with autistic sons and because I worked in the charity sector for years, meaning I’d come across it occasionally. To be honest I feel like I’ve known about it all my life. It sounds cliched but I honestly feel like I can't remember a time before I didn’t!
6. What are the biggest challenges facing your child and your family?
At the moment we are having great difficulty getting him access to the amount of preschooling he’s entitled to and it's been a horrible experience. It's changed my whole perspective of the education system and he’s not even properly in it yet!
But really day to day our life doesn't feel like a challenge. It's just our life. We don’t know it any other way and never will (we have, and will being having, no other children). I can appreciate there will always be hurdles, probably more so than a family with typically developing children. And some days that makes me so sad. So I try not to focus on the future and try to look at the here and now. No parent knows how their child will develop, but being the parent of an autistic child makes you confront that uncomfortable truth early on in a way other parents just don't.
We have a superb Early Years Caseworker. She is the most competent civil servant I think I’ve ever come across and I’m really sad she’ll only be with us until he's five!
We also have a very supportive family. They’ve been so accepting of Oscar as he is. Despite living 300 miles away from all our family he’s as much a part of the clan as anyone else. I just wish they lived closer! Because they don't, we were referred to Home Start when we received Oscar’s diagnosis and our lovely volunteer has been so supportive. We call her our RentaGran, as she's comes over a plays with Oscar every week, the way his actual grandmas would if they were closer.
8. What has surprised you the most about raising a child with Autism?
There's a favourite saying within the community “when you’ve met one child with Autism, you’ve met one child with Autism” and as cliched as this sounds it's spot on! Just because your child does this or that or is sensitive to this or that, doesn't mean mine is. They are children, people, as distinct and individual as any.
I thought I was open minded and understanding before having Oscar, but his diagnosis has shown me how sheltered I’d really been.
Don’t get me wrong, Autism isn't all positive and life affirming. It’s surprised me in that I thought I knew sadness before. I really didn’t. That might sound terrible, he is afterall our son and he's gorgeous and he's here with us. Doesn't mean I haven't experienced terrible life changing sadness since getting his diagnosis.
9. What’s the main bit of/the best advice you’d give another parent who has a child with Autism?
I don't think I'm in a position to give advice. I'm still so new to this myself. And as I always say my experience isn't yours and vice versa.
I suppose one thing that has unexpectedly helped me is writing my blog. I don't write exclusively about Autism but the posts I have written about how I'm feeling or what's going on over the years are wonderful to look back on. When you're lost in the middle of the chaos of life, it can be hard to see where you've come from. But having a written record can show you just how much has changed and how much you and they have achieved. I'm not suggesting everyone writes a blog, but some kind of diary of events, just some weekly notes, anything, can be enough to show you the progress you might not see otherwise. Reading it can sometimes be heartbreaking, but it’ll never not be worth doing.
10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
That some people have an unlimited capacity for love and understanding. And that others just don't.
That all children can be accepting and curious and more understanding than most adults.
That there is no such thing as ‘normal’. That it's a myth.
That everyone thinks they understand Autism and most people think you can pinpoint where on the ‘spectrum’ your child sits!
That Autism isn't rare and everyone knows someone on the spectrum. And want to tell you about them and introduce you to them and their family!
But mostly I think it's made me a more appreciative person. Because I appreciate every small achievement so much more than I would have done if Oscar didn't have his diagnosis. Every word he's said, everything he's done, I take nothing for granted (I hope). Waiting three years to hear the word mummy, will do that to you :)
Thank you so much for agreeing to take part in the series Lisa. I love the honesty and raw passion in Lisa's writing. Please check out more of her posts over at mrssavageangel.
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