| Posted by My Super Nanny
How lucky we were to chat with Super Mum Sarah O'Connor this week.
Along with running 2 blogs, a You Tube Channel and hurrying her kids here and there, she is the doting mother of 17 year old Beth whom has Autism.
Thanks Sarah for letting us into your world and sharing a beautifully candid and insightful look into yours and Beth’s life.
Who are you a Super Muma to?
Beth who is 17, Bill who is 14 and Bridie who is 11
Aside from running a household, what other things keep you busy?
Beth has autism so of course she always keeps me on my toes! This has taken my life in a completely different direction than I originally thought. I run an autism support group called HAGS in the Hills (Happy Autism Group Support) and also co-host an autism information channel on You Tube called JAS CHAT (Jo and Sarah's Crazy Honest Autism Talk) + its website and Facebook page. Yes I love acronyms! I am also currently completing a counselling course and enjoy alternating art and piano classes. As Beth is at a school out of our area I spend much of my time driving her to and from school or to buses which means I am limited for time as far as work is concerned. Hopefully as a counsellor I can fit my hours in around my girl.
So your blog and You Tube channel are all about raising a child with autism. At what age was Beth, your magical eldest child, diagnosed?
Beth was two and a half when we got a diagnosis. We were lucky in a sense as our local doctor advised us he thought it was Autism whilst at a midwife appoint. We had seen the same midwife since Beth’s birth so she was asking about Beth and I was telling her how difficult she was. She went to get the doctor straight away who told me it sounded like Beth had autism.
What was your initial reaction to the diagnosis, how did you and your family digest the news?
To tell you the truth it was a relief. Beth would scream if I was on the phone and run off if we were in a playground or walking anywhere really. She had no sense of danger as far as cars were concerned, never seemed to listen and was just such hard work. Once I had a diagnosis I could at least tell myself it wasn't my fault. Being a first time mum I thought that maybe I just sucked at it!
After the diagnosis we were given some books on adult women with autism which they were quite awful. The women hadn't been diagnosed as children and had been misdiagnosed with various other disorders, some had been sexually abused, and all had been mercilessly bullied. I was quite angry as I believe this could scare some parents into denial, that's why I started my blog. I wanted to show that Autism could be a positive thing and to show how wonderful my girl is. I wanted people to be able to read it and say 'ok, maybe I can cope with that.'
Parenting is a tough gig at the best of times. How do you cope with the additional needs of a special needs child? What support do you have?
I have a very supportive network. My in-laws live next door to us, they moved to the area when we got Beth's diagnosis and my sister lives down the road. I have excellent friends and in addition have made great friends with mums in my support group.
I have heard of people losing friends after their children get a diagnosis. I don't think this has happened in our case but if this had happened then I would think they must have been pretty crappy friends to begin with!
Does it affect your other kids?
As my other kids are younger, they don't know any different. I try to spend quality time with each child, which is much easier now they are older. It was bloody hard work when they were all younger. Having a 6 year old, a toddler and a newborn had its challenges! Now they are at a different school to Beth I think it is nice for them. For a while they were all at mainstream school together and Beth often did embarrassing things. Some kids can be cruel. Bill is now at high school and it's nice for him to be there as himself instead of the brother of the kid with autism. Our Primary School were wonderful with Beth but we opted to send her to special high school.
Has it changed your marriage?
It did put a strain on our marriage. We got used to socialising separately, as getting the kids babysat was hard. And for a while there I had to sleep in Beth’s bed as she would be up at all hours. She had to be monitored to stop her from going to the kitchen or bathroom and running amok. Thank goodness for the discovery of melatonin!
Can you give some advice to people discussing a special needs child with the parent? Are there any questions that are simply a no-no, or ways to better phrase questions so not to offend the parent or child?
It's is a hard one as each parent is different and can be quite touchy at times. I am happy for people to ask about Beth and I often bring it up myself to help their embarrassment. A friend wrote a letter to the kids in her daughter's class explaining her autism and I wished that I had done that. I think it's a lovely idea… Everybody is made aware and the parent of the child with autism knows everyone knows.
I have had mums say to me 'can I ask what is going on with your child please' and personally have found that to be fine. But I guess being 'in the know' I know the types of things to say and can easily pick a child with autism. So I might say 'I love quirky kids, I love how your son does such and such'. This ways it’s a complimentary thing, opening up the dialogue for the other parent.
Asking what is wrong can be taken the wrong way especially in the event the parent doesn't realise that there is an issue.
Something I highly recommend people do is ask the child for a play. We are always extremely grateful (but doesn’t happen often).
You speak about Beth’s treatments in your blogs, which ones have you and Beth found most successful?
Of course the tried and tested ones such as speech therapy and occupational therapy. We've also tried dietary and metal detoxification. I'm a big believer in treating the symptoms and issues rather than the label. Growing older has made her more aware of things and more open to trying new things. We're currently trying a new movement based program which integrates the left and right side of the brain. She's not too keen on this but I think it's good for her. She needs to learn how to regulate herself and walking the dogs seems to calm her so any sort of movement is beneficial.
Tell us about Beth’s schooling journey…
She's in the equivalent of year 11 this year. She's in special school and is doing VCAL cooking. In hindsight I wish we had sent Beth to special school all along. She had an aide to assist her full-time in primary school so struggles with independence, but I’m happy to report she is going pretty well and loving doing the cooking!
She'll never be fully independent and that's something I've come to terms with. Next step will be organising what to do for her adulthood. I have no idea on that score!
Do you have any advice for families in a similar situation to yours?
I say do whatever suits you and your child. People can be very judgmental but they’re not living your life. For example, Beth had selective mutism for 3 or 4 years. She spoke for less and less time each day and by the end it was for about half an hour. We tried all sorts of therapies but in the end chose to try anti-anxiety medication. Within days she was talking to everybody. We didn't make this decision lightly but from an outsiders point of view we could be seen to have opted for the easiest choice. We didn't want to do it but when we did we wished we had done it earlier. Each child is individual and what works for some doesn't work for others. Be the advocate for your child. If you're not happy with things, whether it be medical, therapies or schooling, speak up. They often don't know what the issue is themselves so we have to be their eyes and their ears.
Mums are certified ninjas, so what is your greatest Super Mum power?
I think for me its pre-empting what is going on inside of Beth's head! She gets worried and anxious about things and they snowball; if we can't pinpoint what the issue was to begin with then we can't stop the behaviour.
Find Sarah and Beth's adventures socially here: