Blessings

It is the time of year when we sit back and reflect on all the things we are thankful for. Whilst I often feel frustrated and discouraged about life in general there are many things I'm thankful for as well, including good health. Below are some of the things that top my list.

First of all I’m thankful for my daughter for choosing me to be her Mum. Despite all the challenges I feel blessed to be raising a child with autism and the unique perspective it is giving me of the world, after-all only six children in a thousand have autism so how lucky was I. She has made me into a better person who is not so quick to judge others, who has found that material possessions well, are not so material after-all, and who has introduced me to many, many wonderful, incredible, inspirational people I would not have meet ordinarily. I am thankful for this cheeky, quirky little girl who makes me laugh out loud at least twenty times a day. I am thankful for this little girl for giving me something to look forward to when I come home from work at night. I am thankful for this little girl for instilling in me the true meaning of Christmas, who doesn’t care for presents and instead finds delight in all the beautiful lights and just being with her Mum, Nan and Grandpa.

I’m also thankful for my parents who have looked after my daughter since she was three months old so I, a single Mum, could go back to work to keep a roof over our heads. I’m thankful for the love they have for my daughter and the effort and time they have put in. To all the trips to the beach, park and library so that my daughter may have many wonderful memories as she drifts off to sleep at night. I’m thankful for my Dad, who despite having arthritis at a young age of 56, still piggy backs my seventeen kilogram daughter everywhere and who, despite my grumbling, has races with my daughter up the escalators at the local shopping centre until they are told off by the security guards. I’m especially thankful for my Mum who was there when the Paediatrician dropped the bombshell of autism and has been to every single therapy session and medical appointment since. By mostly I’m thankful to my parents for accepting my daughter for who she is and for never criticising or reproaching her.

Lastly, I’m thankful that I work for a Federal Government that recognised my rights as a Mother of a special needs child and accommodated me in everyway they could so I could spend as much time as possible with my daughter.

Have a Merry Christmas!

Living a life of mediocrity

 At the moment I’m reading ‘Empowered Autism Parenting’ by William Stillman. It is a very uplifting book and reinforces my own convictions about my daughter and her unique place in the world. I’ve read so many disheartening books on Autism of late that it was quite enlightening to read a positive one for a change (one book ‘Challenged Parents, Challenged Kids’ still makes me cringe). Stillman offers hope and real-world information for parents of children with autism, dispelling the myths about high-cost therapies and medications.

One thing that has been troubling me of late, which Stillman brought up, is the conviction of many therapists to discourage ‘obsessions’ or what I would refer to as special interests in autistic children and young adults. According to a therapy I started a couple of months ago (based on building relationships), obsessions/interests are seen as obstacles to remediation as they often block the child’s availability to consider something new or to seek out experiences with people in their world. According to the advocates of this therapy, without remediation the child would otherwise lead a life of marginalisation and failure. Some parents have gone as far as pulling their autistic child out of computer science classes, probably the only place that child feels he truly fits in. This has some merit as no parent wants their child glued to the computer screen to the exception of all else, including developing healthy peer relationships. But how far do we go?

Temple Grandin has often written about this topic. Whilst the therapy above talks about focusing on the child’s weaknesses, Grandin speaks about the need to build on a child's strengths. With high unemployment for ASD adults there is a need to ensure that we don't snuff out any possibility they may have a marketable skill, she writes. Grandin herself is a prime example of this. Similarly, Stillman writes, “when we value passions instead of labelling them obsessions (unless they seriously impair a person’s quality of life), we are better poised to envision a creative blueprint of possibilities for the future … these may include higher education or self-employment opportunities.”

Behind every successful sportsperson or artist was a childhood 'obsession' or passion. Professional footballers didn’t suddenly become great sportsmen at the age of eighteen. No, they probably ate, slept and breathed football throughout their entire childhoods to become the success they are today. How many well-known writers you know who talk about childhoods scribbling away by torchlight at night when the rest of the household had long gone to bed. Imagine if Hemingway, Kipling, Dickens or Austen were discouraged from writing as young adults. So why should Autistics be discouraged from their special interests to live a life of mediocrity? Stillman writes that we all engage in activities which allow us to experience satisfaction or pride, they are called hobbies. “But wait”, he writes, “how come you can have a hobby, but I, as someone with Asperger’s, must have an obsession?” and seen as a “maladaptive behaviour and abnormal fixation that needs to be extinguished.” Please note, that Stillman and Grandin distinguish between passions and interests and those obsessions that may be self-harming.

My daughter just loves the water, so we often take her to the beach and pool and even to the pet shop so she can watch the fish in the massive aquariums they have. I even have an aquarium DVD and books on marine life (a fish tank is on its way). Should I be discouraging this interest? My gut instinct says no. The whole family enjoy these outings and we are making many wonderful memories sharing these experiences with her. And you never know, maybe she will grow up to be a marine biologist or ecologist.

Wasting my money

These last few days I have been sitting down and devising a therapy plan for Elizabeth for next year. This year was rather disappointing. We had three different Speech Therapists and each one started off rearing to go but by the sixth week, when there was no obvious results, started getting the look of dejection about them. When the third therapist said, “we just don’t want to waste your money” I put my foot down and explained that I was not wasting my money, that Elizabeth has indeed improved significantly over the last year. A year and a half ago I could not get her into the room, I’m sure her screams could be heard from blocks away. Now she will sit happily at the table doing hand over hand for half an hour or more. And whilst she still does not use words she is much more vocal now and has a much higher comprehension level. I explained that I did not expect results instantly, this was after-all a marathon not a sprint. Autism is not something that can be fixed or cured like stuttering, despite what certain therapists want you to believe.

In the last couple of months the Speech and Occupational therapist have worked together with Elizabeth. Whilst this approach may seem good on the face of it, two therapists together after-all must be better then one, the sessions ended up evolving into a higgly piggly affair with nothing much being achieved. Next year we will be attending separate Speech and Occupational Therapy sessions with clear attainable goals set by me. I do not wish to ‘cure’ my daughter. Her autism is who she is. But I also want her to achieve her full potential.

Rett's Syndrome

My daughter's Paediatrician rang this afternoon to speak about concerns raised by the Senior Therapist at the clinic Elizabeth attends. They both wish for Elizabeth to be tested for Rett's Syndrome, a complex neurobiological disorder of development in which an infant seems to grow and develop normally at first, but then stops developing and even loses skills and abilities with onset motor deterioration occurring later in life. The symptoms of Rett's Syndrome are very similar to classic Autism. I immediately got onto the internet and started researching the Syndrome as the test is very expensive and I wanted to make sure before I dolled out yet more money. Yes, Elizabeth does have many of the symptoms such as loss of speech, anxiety and social-behavioral problems, and feeding difficulties (but these are common with Autistic children as well). But the most common symptom she definitely does not have is loss of motor co-ordination and movement. Elizabeth is very active with excellent gross motor skills, she's a veritable gymnast when it comes to the trampoline and she can easily race me up the stairs (its fine motor skills that are the problem). Tomorrow, I will be sitting down and having a deep discussion with her therapists before I go prodding Elizabeth with any more needles.