Four people live in our home. Ben and I. Elton and Audrey. We like to do simple things. Like go for drives to the markets and buy cheese. Watch movies. Go and look at our neighborhood or the city.
We are a good team. Pretty quiet. We laugh every day. We care for one another. We are interested in things we do know and things we don't and we talk
alot.
We are also a little different to most families. We have a child who is Autistic and we are a family living with Autism.
This I know -
Autism is not caused by
inoculations. Autism doesn't go away. There is no cure. Every child is totally different to one another. If you are Autistic you can be loving and show empathy. Not all children hit or bang their heads on walls.
Rainman is a movie about one person with Autism. Not a movie about what Autism is like for everyone. Every parent worries about the future.
Everyday I try to be positive for our family. Being the main person and primary carer for Elton it's my job to be the conductor. Organising the information. Filling out endless forms. Running to Occupational Therapy and Speech. Going to family support meetings. Doctors appointments.
Paediatrician appointments.
Kindy run. Making sure the teachers are talking to the professionals in Elton's Group at
Irabina. Does Elton have his visuals. What time is basketball? Get the dinner. Defrost the meat. Keep the floors clean. Do we have clean clothes? My daughter....please don't forget me Mum. Is it always about Autism? I'm normal.
Some days the band is playing really well and other days it's shite. Like today.
It can be so hard to be positive. I wake up
some days feeling sad and I haven't done anything yet. There is a knot it my stomach and my heart is beating fast and all I have done is shuffled out of bed.
As much as Autism affects my darling boy who is the sweetest person I have ever known, it affects us all in someway.
Ben doesn't have any real support from other guys. I go to
Irabina (Elton's Autistic Early Intervention School) and I can share things with the other Mums or with the teachers....but Ben has nobody. Except me. Ben has friends and brothers but nobody who is going to call up just to ask him how he is doing or feeling. Does today suck or is it a good day?
My little girl helps Elton put his clothes on, knows when to stop talking because Elton doesn't like noise today and cheers support and encourages Elton but she can't understand why. Audrey also has found it difficult to settle at
Kindy and is very teary.
I go to
Kindy and stand in the line and I can't help but feel like the hunchback of
Notre Dame standing amongst the
princesses. I feel like I can't relate to any Mum who is "normal" and that they don't understand me either. I know it's not all in my mind. Last year Elton wasn't invited to one party. Elton wasn't aware. But I sure was.
Elton likes to hold onto his pants. It's his
habit and no matter how many times I gently remove his hand, he pops it straight back on. Many mums have spotted Elton doing this and tell me that he needs to go to the toilet, which I reply back..."no, it's just his thing," and I smile, but they don't really understand and sometimes I want to say he's Autistic and other days I don't because we heard all those labels in school - nerd, freak, bookworm, in-crowd and Autistic is another one and he's just my beautiful son.
When we went back to Perth many people would comment saying that they were amazed Elton was playing or interacting with people and Ben and I would just look at each other. Believe us, nothing pleases us more to see our son putting to practice everything he is learning, but it's also because every single waking moment is visuals with truck loads of patience and going over pictures and scenarios and trying to trouble shoot every minute of the time at home so that for the few hours Elton leaves the house he is capable of keeping it together.
But tomorrow is another day. It's Autumn now. It is not a thankless role. We see improvements every day and it's what spurs us on. We are happy and to us that is all that matters.
Everything is fine.
*photo from here
