real life

The day I told my daughters they have Asperger's.

Jennifer Jones

 

 

 

 

By JENNIFER JONES

Today I outed my family.

We’ve been a closet Aspie family for eight years now, with only close friends knowing that my husband and two eldest daughters are diagnosed with Asperger’s Syndrome.

Asperger’s is so well known now so I don’t feel I need to go into a description of what it is, suffice to say that it is on the Autism Spectrum and we’re down the mild end, with my eldest being more the blurry Autistic/Asperger end.

My eldest was so much more obvious when she was little than my second daughter.  She had the tell-tale spinning train wheels endlessly but not actually playing with toys, monumental meltdowns, the fussy eating (still continues), social impairment and communication difficulties plus myriad sensory issues. She also had seven movies memorised from start to finish which she would say word for word while walking around the backyard. And she could do a new 200 piece jigsaw at age two in about ten minutes.

Houston, we may have a problem!

Life was not easy when my eldest was a toddler.  She’d fly into uncontrollable meltdowns if schedules didn’t go exactly like we’d said, which could last for hours on end.  By the time she’d finished we’d both end up exhausted wrecks on the floor.  There was a whole lot of what to dos and no understanding or answers.

Life gives you answers if you are silent enough and I remember one day going to the computer and just typing in Autism and bingo, there was my answer.  My daughter checked off every single point on the checklist.  And while we were looking at it, I looked sideways at my husband who was laughing and saying, “that’s me!”

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And so our journey began.

The young years with my girls were devoted to therapy.  I am and will be eternally grateful to all the people that came into our life and helped us. The very first angel to come to us was an occupational therapist who arrived at our house with a box of toys and all the answers to my millions of questions.  She educated me.  Right from the start, I took to the education part of this journey hungry for all the knowledge I could gain mostly to help my daughters, but partly because it sparked an fascination for the brain and human development.  I started reading everything I could, even text books.  Mostly I listened to my gut feeling and discussed this with the team of professionals I had painstakingly picked out.

The other very early person that came into our life was my eldest daughter’s first speech therapist.  She wasn’t just a speech therapist but worked with a lot of kids on the spectrum who have something called Semantic Pragmatic Speech Disorder.  This is where the children have the words but don’t know how to use them.  They literally don’t know what language is for.  It was a very hard concept to get my head around.  The other thing she did was teach my daughter imagination.  This was probably one of the most profound things I have witnessed.  For six months this lady and I sat with a doll pretending to say “hello.” My daughter would look at us like we were mad.  Why would a plastic doll talk?  But we persisted through each mind numbingly boring hour of sitting there pretending the doll was talking.  Then one day she picked up the doll and said “hello.”  A breakthrough! And I can tell you in honest truth, from that day on she was off and running and is the most fantastically imaginative person now.  We had actually witnessed the neurons in her brain connecting.  I felt deeply moved by that experience.

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The book that was used to help explain Asperger’s to Jennifer’s children.

My husband has found finding out that he has Asperger’s a very reassuring experience as well.  We went the step to get him formally assessed and it came out a very strong YES!  It made sense to him and helped us enormously in our marriage because I understood where he was coming from.

We recently told our children they have Asperger’s. I had that strong urge that now was the time to tell them.  So I bought a lovely book called “All cats have Asperger’s,” that has cats in funny positions with captions next to the cats explaining the different characteristics of Asperger’s in a gentle, fun way.

I sat down with my eldest and we just read it together. Throughout the book, she was laughing saying, “this is me, this is MEE!!!” Then when we finished she grabbed the book and said “I can’t believe they’ve written a book about the exact person I am!” I told her well, she has this thing called Asperger’s and there are lots of other people out there who have it including her dad and that’s why her brain thinks a little differently to other people.  She seemed so happy.  I was the perfect time because I really sensed she was wondering why she was different.  Then my eldest and middle child had an argument over who had the most Asperger’s with my middle daughter complaining to me “but mum, she says I only have half Asperger’s and that’s not fair!”  Hysterical!

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I haven’t talked about this openly before because I really didn’t feel I had any right to without my children’s permission.  We all talked about putting this out to a wider audience and they said they’d be cool with me discussing it.  My husband doesn’t mind either.  They know my mission is to break down barriers and my passion is to bring out the best in every child and person. This is what I feel the second part of my life is about and I really feel this Asperger’s journey was given to me for a reason.  It’s changed the person I am (for the better) and I want to share my story and join a growing group of people committed to  helping others.

It’s not some heavy thing ­ we’re all light and laughing about our quirky family.  I want to bring the fun into it all.  Yes, there have been some seriously dark days, but we’ve all grown from those times and we’re in a place where I feel we have experience and knowledge to offer.

You will also never hear me refer to Asperger’s as a disorder.  To me it’s always been a difference in thinking.  A bit of a left of centre way of looking at things.

And that’s just fine with me because I love the quirky people.  They’re fun!

Jennifer Jones is a mother of three funny, quirky, wonderful girls and wife to a fabulous man.  After ten years working in finance, Jennifer embarked on the highly challenging job of becoming a mother.  Little did she know that the motherhood path would take an unexpected turn and open her up to the  world of Asperger’s Syndrome.  This amazing journey resulted in Jennifer ultimately finding self love and acceptance, returned her to her love of writing and changed her life forever.  In February 2013 Jennifer started documenting her family’s year of living a fun life on a budget by writing a blog.  Her blog is called The Family Funget.

How do you approach your children’s quirks? Have you had a similar conversation with your Asperger’s child?