If the first step to saving your autistic child, your family, and yourself from that burning building that is the ‘system’ and a society that does not understand or accept him/her is TO EDUCATE YOURSELF then the second is…
To Think Outside the Box!
Actually, to realize…there is NO box!
What is that box anyway?
The box that traps most of us is the expectations, behaviors, and norms of society. In particular, the culture in which we live. For neurotypicals, we are issued a mask early in life. A mask of who we are supposed to be, how we are supposed to behave, and what rules we MUST obey…without question.
As that meme implies…the most beautiful part of autism for me (and there are many wonders associated with it) is that mask transferal seems to be faulty. And if you allow it, your child’s honesty of being will eventually free you of your own.
In a practical sense though, thinking outside of the box means thinking creatively to get the things that your child and you need to make life better.
Let me give you examples from our own lives…
The first is her Maclaren Major special needs buggy. One of the biggest challenges of her one year in school was transport. It was a relatively short distance from our home to school so she managed getting there in the morning fairly well. But getting home in the afternoon after a long, stressful, and exciting day was a totally different matter. It often meant meltdowns. Even on the best of days it meant long delays at the park as she ‘rested’ by running around.
I actually asked the school at one of our Team Around the Child meetings about getting a buggy for her. I was discouraged from doing so…because the other children would make fun of her, pick on her for being a baby, and bully. No sense of ownership on their part for providing all children a safe and bully-free environment, of course. But more on that later.
When I did take her out of school to home educate her, I was committed to providing her the opportunity to develop her social skills in a bully free environment. That meant frequent, sometimes daily trips to parks when the weather permitted. And as with school, she happily skipped and ran to the park. But collapsed and refused to walk back home…even a couple of blocks.
To make matters worse, I had been in an accident and had whip lash. So carrying her hurt my neck and shoulders very badly. At times we were almost house bound…that myth of the isolated home educated child.
I had heard of the Maclaren on a forum for home educating parents of special needs children. But these buggies are EXPENSIVE. New ones cost about the same price as a crappy used car…several hundred pounds. That was NOT in my budget as a newly single Mom. I was told that the local authority usually paid for them. It was a matter of getting an occupational or physical therapist to sign off on it.
So off I went on my first wild goose chase for something that the council was ‘supposed’ to provide. But in my first meeting with her new developmental pediatrician I learned that the cut backs meant they were no longer providing buggies. Only wheel chairs…to the most severe, i.e. COULD not walk. So no luck. Yes, I cried. My neck and shoulders were killing me. But I did not want PanKwake to become that mythical home edder hidden away in the dark confines of her room.
So I got creative…I thought outside of the box. And I asked the people on that forum where I might find one second hand. They suggested eBay but even those were expensive…a couple hundred pounds…and rare…only one or two. But one of the other members of that group contacted me offline and offered me their old one at a price I could afford. But they were in Manchester. Luckily that was where Pankwake’s brother went to university so he brought it back on his next trip home.
And our whole life changed! We could go places now. She was happier…so much happier now. That buggy was our freedom.
Of course, a couple of years later when it broke…that was one of her biggest meltdowns ever. On a BUSY London street. That was scary.
So it was back to eBay. But Fate and the goddess were with us. We paid just £10 plus shipping for the next one. We are on our third and likely final one…also an eBay purchase though not nearly as good a value.
What will we do once she outgrows this one? We are not sure…we have thought of me getting my license but she gets car sick. Hover board? No, she does not want to stand. So far we have not come up with a solution…but we will.
By thinking outside of the box.
Oh, is she bullied for her buggy? Yes, we have had comments from both children and adults. But it does not seem to bother her…not enough to give the buggy up anyway. She will just politely explains why she needs it.
It has though been an education for me in just how young those societal correct masks are issued. Babies under 1 will notice her buggy and give odd looks. Isn’t that mind boggling? That even before we can talk, we are already being programmed on what is and is not acceptable in our society.
Of course, the biggest example of thinking outside of the box was my decision to home educate PanKwake. And especially the path that led us to RadiCool Unschooling.
Her carers are another. Even before we made our disastrous attempt at a personal budget, I had come to the point that I knew I was not being fair to PanKwake dragging her into stores and banks…places where sensory overload was almost certain. So I talked with a family friend whom we had met on the playground. Another mother.
It began as just 4 hours per week so I could shop and do other business like banks, doctors or dentists. That cost me £30/week. Not much but at the time my only income was benefits and child support. But my child’s emotional needs were worth the sacrifice.
The truth is that 4 hours per week or less is fairly common offer from the council. And it costs them or you much more than I was paying…because they use agencies and insist you do too.
Our friends are not surprised that I have our beloved Mog for ten to twelve hours per week now. But they might be more surprised to know that even back in London…on benefits and child support…I had a carer for Pankwake for the same amount of time. She was slightly cheaper being a university student and family friend.
But my point is the old saying…
Where there’s a will, there’s a way!
And the most beautiful and freeing part of it all…YOU decide what is important. What your child and family NEED. It is not standard, one-size-fits-none offer of what government can afford to give you. What some ‘expert’ thinks you need. But what works best for you.
We continue to use that way of thinking even now. With the new challenges associated with the rheumatoid arthritis. Yesterday, my GP (general practitioner/doctor) and I had a parting of ways. I was already looking at 18 weeks on a waiting list to see the specialist. But the way she wrote her referral, I was denied…maybe because she does not listen to her patients and never did a complete physical…so she referred me strictly based on it being my hand and wrists…not my whole body as it is.
I cried, got loads of cwtches from Cookie Monster…and still screamed at PanKwake…first time in a year. Then I picked myself up, dusted myself off and started thinking outside of the box. I am trying a vegetarian diet (my vegan friends understand HOW serious that one truly is). I am seeking out an acupuncturist…and yes, I hate needles so this one is only slightly milder than going vegetarian. I am going back on turmeric smoothies. I am already taking the supplements that have been proven to make some distance.
And of course, I am changing GPs. I have also decided NOT to get caught up in those expectations we talked about the other day. As much as I want to file an official complaint, the truth is…even if I proved my point…the NHS is short of doctors so they are not going to take any serious actions against the woman. I left a bad review on Google so hopefully others will not suffer as I am, but my mental health and focusing on the things I can do is more important than tilting at windmills…things I cannot change. That too is thinking outside of the box.
We are also considering trading the Mog, who is leaving us for full-time employment, for an au pair…which is surprisingly affordable. And could help out a bit around the house too.
So thinking outside of the box is skill that carries over to all areas of your life. And it is something we can learn from and teach to our neurodivergent child…a sharing of knowledge that brings peace, freedom, and happiness.
The road can be bumpy. Trust me, local education authorities, doctors, and the council do NOT like being told they are wrong. But some of the bumpiest paths lead to the most beautiful places. I hope some of you will join us there…