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.
