And that title is no joke. It is sad commentary on one of the least reported issues with autism. The community’s dirty little secret…that no parent of an autistic child wants to talk about…RUNNING. Not marathons…but what is mistakenly called eloping. Those moments we all dread when our child does a ‘runner.’ When something happens and they just take off. When we are running after them screaming and the whole friggin’ world is looking at us like we are the worst parents in the whole universe…why is a child that old running from its parents…and all those other things.
That happened to us today. After one of the best days ever yesterday, playing with her carer, then going to the park and playing with children there…without a single incident of bullying. Then we managed to go to the pet shop on the way home and get a new hamster (old one died without a meltdown too…meltdown from her). Great day…
And I know…a bad day almost always follows. But she was good this morning and had her other carer in the afternoon. But the moment she left…all hell broke loose. I was just lucky that I was fully dressed this time because she was out the door that quick. I did not even have time to grab my phone…just my keys. We ran around the flats out back for a good twenty minutes before she calmed down. We went to the store…then she fell asleep in her buggy on the way home. But the moment she woke up…she was right back at it. This time I managed to block her exit but it took twice as long for her to calm down. Now she has had a bath, is eating pizza, watching Disney channel and playing on the iPad (she told me the other day to leave the TV on…she was multi-tasking?!?) And adrenaline is still coursing through me…I am on full alert.
Runners are one of the scariest parts of our jobs because:
1) They terrify us…unless you live in a Little House on the Prairie…then there are streets and cars and bad people out there. Heck, I guess there would be wolves and bears on the prairie too…no way to win.
2) It is one of those times when people are most judgmental…you are the world’s worst parent. No questions asked. And honestly, when you cannot keep them safe…you feel that they are right.
3) It triggers all our worst fears…police, social workers…let’s don’t even go there.
The thing is that the ‘experts’ don’t do us any favors when they minimize the dangers of this behaviors and its huge impacts on the mental health of families. It is serious business and putting locks on doors and med-alert bracelets do nothing to assuage our fears.
This behavior isolates us…makes us ashamed…terrifies us…it is the dirtiest little secret out there. And I just came out of the closet…
My nine year-old high-functioning, normal looking daughter ELOPED today…and it is no funnier than those adverts we all see on television about girls her age being forced into marriage…elopement, either kind, needs our full attention. We need understanding and support NOT your judgment.
I saw this amazing blog post on one of my Facebook groups. It is by a clinical psychologist, Bruce Levine, who writes about how societal coercion, those shoulds and musts that we learn early and fear to ever break, is perhaps the root cause of mental illness. He relies upon studies and anecdotal evidence comparing our Western societies (and Eastern to an extent) to the indigenous populations whereby cohesion and community are more important than ‘getting things done.’
He spends a great deal of time discussing how different parenting is within these indigenous societies. He talks about how children are seen as individuals with their own needs and rights. How beyond supplying them with access to food, water, something to keep them warm and a place to sleep the children themselves make many of those choices for themselves. When to sleep. When to eat. When to wear clothes and when to run around naked.
One source that he quotes is Jared Diamond, author of From the World Until Yesterday (2012). Diamond has actually worked with indigenous people in New Guinea for nearly a half century. In his book, Diamond uses terms such how laissez-faire parenting which has abundance of nurturance and a minimum of coercion. He says that this parenting style is “not unusual by the standards of the world’s hunter-gatherer societies, many of which consider young children to be autonomous individuals whose desires should not be thwarted.” Diamond states:
“Other Westerners and I are struck by the emotional security, self-confidence, curiosity, and autonomy of members of small-scale societies, not only as adults but already as children. We see that people in small-scale societies spend far more time talking to each other than we do, and they spend no time at all on passive entertainment supplied by outsiders, such as television, videogames, and books. We are struck by the precocious development of social skills in their children. These are qualities that most of us admire, and would like to see in our own children, but we discourage development of those qualities by ranking and grading our children and constantly telling them what to do.”
Levine compares this to our own societies when he says:
Modernity is replete with institutional coercions not present in most indigenous cultures. This is especially true with respect to schooling and employment, which for most Americans, according to recent polls, are alienating, disengaging, and unfun. As I reported ealier his year a Gallup poll, released in January 2013, reported that the longer students stay in school, the less engaged they become, and by high school, only 40% reported being engaged. Critics of schooling—from Henry David Thoreau, to Paul Goodman, to John Holt, to John Taylor Gatto—have understood that coercive and unengaging schooling is necessary to ensure that young people more readily accept coercive and unengaging employment. And as I also reported in that same article, a June 2013 Gallup poll revealed that 70% of Americans hate their jobs or have checked out of them. Unengaging employment and schooling require all kinds of coercions for participation, and human beings pay a psychological price for this. In nearly three decades of clinical practice, I have found that coercion is often the source of suffering.
And I thought…this is the best argument I have heard for unschooling in a long time. Yes, I cannot provide my daughter with that type of nurturing society that is free of coercion. BUT I can give her that type of home and education through home education and unschooling.
But my mind did not stop there. One of the unique measures that Levine uses to compare indigenous societies with our modern world is the prevalence of schizophrenia. He quotes several studies that show this mental illness is virtually unknown among those indigenous tribes. And I had an ‘ah-ha’ moment…I could not stop myself from wondering…what about autism?
Do not get me wrong, I am not the type who believes that it is vaccines or viruses or food additives or smog or (insert theory) that causes autism. I believe that it is much more complex than that…a combination of factors.
What I do wonder though is…would these people even notice? Would it matter? Or would this type of laid-back, “laissez-faire parenting which has abundance of nurturance and a minimum of coercion” lower the anxiety in our children to the point that their behaviors virtually ceased? Perhaps their enhanced sensory perception would even be seen as gifts in a world were nature ruled with smell, sound, taste and sight?
As the mother of a bright and beautiful nine year old daughter with high-functioning autism and epilepsy, there are days when the world seems so bleak. When I am so tired because I was up with her all night. When we have been accosted in the park AGAIN by some stranger that thinks she knows how to raise my child better than I do…and feels she actually has the right to tell me so. When I cannot find the ‘right’ food or cannot stop the noise of the tree cutters and I feel like I am failing her. When the ‘experts’ who failed to diagnose her, failed to protect her from bullying and failed to provide us the help we need to give her the best future still seem to think they can ‘judge’ me for doing what I know is best for my child. Days when I just break down and cry, when I wish that there was someone there to hold me and tell me that everything would be all right in the end. Yesterday was NOT one of those days. Yesterday was the kind of day that I pray for. Yesterday was as good as it gets…in my world anyway.
PanKwake loves Disney. She loves Disney on Ice. She especially loves Frozen. Last night we had virtually front row seats for…Disney Frozen on Ice. It don’t get much better than that, folks!
Except as much as I want to give her all those things in life, I know that they will always present challenges all their own. PanKwake does not like the Tube. In fact, our most common form of travel is walking. Because of the lights, the loud sounds and especially all those Londoners pushing and shoving. Worst yet…how judgmental and just plain rude that people can be. Getting to things like this is a major hurdle.
Yesterday, we were blessed that we had three tickets (not the great ones we had, but the backup ones that her dad had bought earlier). We invited PanKwake’s carer and her two girls. So here these two Moms with three little nine year old girls, PanKwake in her MacLaren Major buggy even, getting on the Tube at 4 o’clock, afternoon rush hour. I was dreading it.
PanKwake found a seat and she began to sing, ‘Let It Go.’ Now, she like her Mom does everything loud. I cringed and prepared myself for some comment from this business man standing next to her, whom I am sure had a hard day at the office. Instead, he starts to smile. And when she finished, he actually hooted. Thank you to that angel unaware. You have no idea what that meant to me…that just this once I did not have to apologize or explain for my child being…a child.
Then we get there and everyone was so wonderful and helpful. From the people on the door who directed us where to go to the vendors who waited patiently for PanKwake to pick her souvenir. Thank you all.
Biggest thanks of all…the family who sat next to us, who did their best to engage her in conversation. Who endured her fidgeting. And to the young family behind us for bearing with us when she just HAD to stand up to sing her favorite songs. Not once did they ask me to make her sit down. And to the usher who bore with us when she had to dance in the aisle…thank you too.
Lately, PanKwake’s days and nights have been a bit mixed up. And even though she took a couple of hour nap before we went, by the end she was exhausted. Of course the big finale was her Frozen. And I am of two minds. On one hand, I know that she did not have the energy to sing her heart out like she normally does…and the videos show that. But on the other, she also did not get herself too worked up.
After the performance, we collected the buggy. Found our friends. Because I knew that it would be late and we would ALL be tired, I had pre-booked a cab. He arrived just on time…a couple of minutes early even. Thank you Express Minicabs. PanKwake fell asleep in her buggy and slept all the way home. Then went back to sleep on the couch…with NO problem.
Best of all, on the way home, my carer and I talked about autism with her two beautiful daughters. We talked about what it feels like to be PanKwake. To live in a world where the lights are too bright. Sirens hurt your ears. The label in your shirt feels like sand paper. And everything is just kind of smelly. We talked about how they could help her…and other children in their schools. We talked about why we choose to home educate her. And I could see their little minds absorbing it all. The cab driver was listening too.
Two things made yesterday the best…1) PanKwake did it! No meltdowns! She was absolutely as good at managing her behaviors as she could be. Of course, she was still and always will be autistic. She cannot sit there quietly and be still. But she did her best…and that is all I could hope for. And 2) even more important to me…everyone else did their best too. They showed compassion and understanding. They showed what I long for most….ACCEPTANCE.
Of course, I know that not all days will be like yesterday. PanKwake woke screaming this morning because we were out of chocolate milk. But we managed. And I know too that there will always be ignorant people. I re-tweeted something the other day that says it so well, “I could no more spank the autism out of my child than I could slap the ignorance out of you.”
But yesterday gave me a glimpse of the world as it can be…and I am left humming one of my favorite Disney Songs…
We’re not sayin’ you can change him,
‘Cause people don’t really change.
We’re only saying that love’s a force
That’s powerful and strange.
People make bad choices if they’re mad,
Or scared, or stressed.
Throw a little love their way.
And you’ll bring out their best.
True love brings out their best!
Everyone’s a bit of a fixer-upper,
That’s what it’s all about!
Father! Sister! Brother!
We need each other to raise
Us up and round us out.
Everyone’s a bit of a fixer-upper,
But when push comes to shove.
The only fixer-upper fixer
That can fix up a fixer-upper is
Thank you to all of the angels unawares that made yesterday one of the best days ever. Goddess bless you all, you gave me hope that love and acceptance will one day be the rule in the world and the exception.
Today had been a total and completion validation of my decision to unschool PanKwake. For those of you, who may not be familiar with unschooling, my favorite quote is by Pat Farenga, co-author of the new edition of Teach Your Own: “When pressed, I define unschooling as allowing children as much freedom to learn in the world as their parents can comfortably bear.”
And that is the key…bearable. One area and only one area where I doubt myself is…reading. PanKwake is nine and cannot read. She has excellent reading comprehension skills mind you. She can answer almost any question that you throw at her about a story you read to her…except things that would boggle any autistic child mind like: what do you think happens next, how do you think he feels. But when I use my fingers to track words or even purchase technology like read-along books and apps, she refuses to even track the words with her eyes. She cannot even accurately recognize all the letters of the alphabet.
I am a ferocious reader…and a writer. Imagine how I feel about the possibility that my incredibly smart and talented little girl might never share that love of the written word. More times than not…I feel like a complete failure in this one area.
I could not read until I was ten myself. Words made no sense to me no matter how hard my teacher tried or the tutor that they got me from the local college. Then one day it just ‘magically’ clicked…and I went from being unable to read, ‘See Spot run. See Jane run. See Dick run. See them run,’ to reading Little House on the Prairie in less than six months.
The exact same thing was true of my two oldest children, who were also homeschooled…and in a much more structured way. They were both angry because their four year old brother, whom we were not actively teaching to read yet, was looking over our shoulders and reading better than they could. And now both LOVE reading…and one has a degree, the other is studying to become a teacher.
We put my other (adult) special needs son into school because we felt ‘unqualified’ to teach him and believed the ‘experts’ could do better. When he graduated, he is barely functionally literate. And for that expertize…he endured ten years of bullying. (I am sorry my beloved son…I do not have many regrets in this life but putting you in school is one.)
I know and have read extensively on Piaget and child development theory and I know that PanKwake remains in the pre-operational stage and lacks the focus and attention to tackle something she finds this challenging.
I can see all of the good things that unschooling has done for her…social skills that even few autistic adults have, better emotional regulation, and most importantly the confidence and happiness that she had lost when she was at school because of bullying.
Even though I know to the bottom of my heart all that stuff, I still feel like I am failing. Even though I am committed to waiting for those signs of maturity and development that will tell me she is ready to tackle it. Even though I know that she lacks the ability to transfer short term memory to long term…a brain development and growth issue that we await. Even though I tell myself that the more important even than reading is the ability to think and reason…which she does superbly. Even with all of that…I still doubt.
She came to me today and wanted to play with her ABC puzzle. That is amazing because puzzles are one of those pre-reading skills that have been lagging behind. So I would have been happy and considered it ‘reading’ to do ANY puzzle…but her letter one?!? Granted, it was about five minutes and I lost her, but that in itself is confirmation of those developmental milestones that we must achieve first.
If that was not enough, she then showed me her strengths by telling me that she was ‘beta’ testing a new design in Minecraft and please do not turn off her television as she was ‘multi-tasking.’ How can any teacher, even a kiss-ass one like my daughter will be or my son is, support those strengths while minimizing her challenges? Especially when they are under pressure from bureaucrats to meet standardized test scores that have nothing to do with the needs of the individual child.
To top it off, when her carer was here…she agreed to do it again with her. One of the other puzzles was strewn across the floor so I suggested that they could do that one together and help clean up at the same time. Of course being autistic she wanted to repeat her earlier success and do the same one we had earlier. Fair enough. So I begin to clean up the other one. She looks up and sees that I have more of mine put together than she does. She comments that it because I have fewer pieces. Her carer, who is studying to become a teacher with her older sister, comments that it is the same number of letters. But you see my pieces were bigger, so thus she thought there were less of them. The very idea of conservation of mass/space that Piaget sees as a key marker between pre-operational and operational thinking. I pointed that out to my carer, who was rightly impressed.
And in that moment I knew…unschooling…allowing her brain to grow…and awaiting key child development milestones that harken reading readiness was the absolute right and best choice for PanKwake. And home educating is the only place with the freedom from national standards, one size fits all/no one, and standardized testing that is failing not just our autistic and special needs children, but all of our children, our families, dedicated teachers, the schools and especially our society.
And today is why I believe that unschooling offers a brilliant way forward for many of our children on the autistic spectrum.
Like pieces of a puzzle that just magically fit together. It will all magically come together…one day…in her time.
I want to share one of my FaceBook posts from a couple of weeks back. It is about a typical day out for us…but still we keep trying. I just wish society would try half as hard as PanKwake does.
MomKwake is exhausted and on the verge of tears. It was another big day at the fun fair in Finsbury Park. PanKwake’s carer took her this time. I stayed just outside because I could not handle watching her on the scary rides.
Then it happened…the call I dreaded: PanKwake was having a meltdown inside. I politely explained to the man at the gate as I cut through the special buggy gate in front of the long line. I held out a tenner to pay my entrance fee but he just shook his head and waved me on.
I find PanKwake kicking and crying. She wants a blue stuffed poodle in the claw machine. I go to the back and explain to the man about her being autistic. He says that the stall at the end of the row has more. I try to talk to her but no go. The man opens the machine and pulls out the stuffed toy.
But even then…it is not enough. That is one HUGE difference between a temper tantrum and an autistic child’s meltdown…even giving them what they want is not enough. The problem is that something physically or emotionally hurts them inside and they lack the communication skills to tell you exactly what it is. Let alone figure out how to make it stop themselves.
So then it was time for her wonderful carer to leave…but without the normal leg hug routine PanKwake could not manage goodbye. She demanded her favorite game of tag. Brilliant and caring person that she is, our carer stayed and even helped push the buggy up the hill to the play area. And tag it was.
But then it was…I want to ride the boats. With a line around the corner and them closing shortly. Then it was…I want a jacket potato.
The thing was that I could see her calming down…almost watch the reasoning return to her bright brain. She was getting herself back into control. And she sought her comfort area once more in the buggy.
Off we go in search of jacket potatoes with butter, cheese and sour cream. The cafe in the park did not have them. So as we walked back out the park I offered her chips (crisps) that we had in her bag from earlier and she thanked me as she accepted them until we could find the potato. She even commented as we passed back by the fun fair, “I am turning my head so I don’t see it and want more.”
We trotted on over to a store near the Tube station because of course almost no cafe has sour cream for their potatoes. We got that and walked back towards the station and with a smile she says goodbye to her carer.
We had to visit two or maybe three more cafes until we found her jacket potato and even then the man had not melted the cheese enough on the top. I worried that she would have another meltdown but instead she said, “I’m so hungry I’ll deal wif it.”
We walked home then…another 20 or more minutes. We stopped at another store for more potatoes so I can make her the good ones and more ice cream.
As we passed the card shop, she commented about another stuffed Moshi in the window. When could I get that for her? I said when I got more money and held my breath for another meltdown that did not come.
We passed the pound shop and she so politely asked if she could have one thing from there. She even picked an inflatable pillow out of the window. And we paid for it. We were almost home then…potato finished and PanKwake smiling.
We made it home…five hours after we left…over an hour and more than a mile walk after we left the park.
PanKwake wanted to play Minecraft on her iPad. I printed out things for her to ‘craft.’ Then she had trouble…and another meltdown. A small one and we are home. No one to watch us. No one to judge us. So I dealt wif it.
This time the issue was that PanKwake was exhausted. She pulled the covers over her head and told me to deal wif it. She was going to take a nap.
Now that was before 7 so I know that she will wake up later, probably just about the time I am laying down to go to sleep. But that is all just part of our life with autism.
So many people would or maybe even will read this and condemn me…for spoiling her, giving into her. I don’t care. Let them. I read a book on autism once that compared an autistic child’s meltdown to a panic attack. I know how that feels.
A few years ago I suffered from depression following a miscarriage. I would have panic attacks any time I got more than three blocks from where I lived back then.
One day I had an appointment. I worked up all my nerve to go to it. I got lost on the way but was determined I could do this. I arrived and checked in with the security guard, who told me to take a seat and wait. I waited and waited and waited. I was afraid to even approach the guard again. I felt panic building inside me like bubbles when you shake a coke bottle. I eventually did get up the courage to speak to the guard again and he nicely called the person with whom I had an appointment, but she did not answer.
I left there in tears. I was sweating and shaking. My mouth was dry and my heart was beating so fast I feared it would explode out of my chest. I walked all the way home then too. Huge tears streaming down my face and people staring at me.
I was forty-five years old. I had two college degrees. I had managed a six million dollar charity campaign. I had handled drunk celebrities at an AIDS fundraiser. I had organized a dinner party in the posh country house of a Duke and Duchess. And I could not stop crying walking down that street with thousands of people looking at me like I was crazy.
So why would I expect my 9 year old daughter to be able to deal wif the pain inside of her?
This society on the other hand should learn to ‘deal wif’ those who are different…be it autism or mental health issues. Cardinal Roger Mahony got it right when he said:
“Any society, any nation, is judged on the basis of how it treats its weakest members — the last, the least, the littlest.”
It is no longer April’s Fools Day. Though at times it may seem like it. Back home in America, two days ago was the deadline for filing your tax return. Paying your bill to Uncle Sam. Rendering unto Cesar that which is Cesar’s. So it seemed appropriate to take a break from #autismacceptance to look at home education. To update everyone on the outcome of our battles to get PanKwake the services to which she is entitled through the Islington Disabled Children’s Team while home educating her.
We won…we got everything we asked for(to just be left alone, not pressured to put her into school, no more EHCP, no home visits)…and we lost, because we wasted nine months of our lives, untold stress and placed our fragile trust once more in a system that is broken…to get absolutely more help whatsoever. Don’t get me wrong, maybe, perhaps even likely, we could have won money if we had gotten a solicitor and spent years in litigation. But at what cost to our sanity? What cost to my health? And most importantly how much of our freedoms and rights as parents and home educators would we have traded for a few thousand pounds?
When we left off with April’s Fools (https://pankwake.wordpress.com/2015/04/01/aprils-fools/), we had just discovered that the ‘independent’ panel that we had been told would determine our case was in fact the new Education, Health and Care panel to which we had independently but under pressure from the social worker applied for an assessment with. Of course, we had already refused what I make no bones about calling their ‘bribe’…£35 per week for twelve weeks contingent upon us finalizing the EHCP. I had in fact told them to “shove it where the sun don’t shine.” And yes, this girl said just that. Anyone who knows me know I would to.
To be fair, in the beginning, we had always planned to apply for an EHCP…AFTER we had completed the Care portion. We just don’t like being lied to, bullied and bribed to do anything…even something we had once wanted to do. Because in the end you think…can we ever really trust these people? Are they being nice now and then doing, saying, writing stuff behind our backs?
Anyone with a special needs child knows one simple truth…everything is a battle. And World War II showed that fighting a war on two fronts is not wise. So since things began we have always picked our battles…knocked things off one at a time. Gotten to the point that we are satisfied with her diagnosis (epilepsy, autism…a five year battle) then tackled respite care (nine months down the drain) with the plan to knock out education next. Families with the huge responsibility for caring for special children have limited time, finances and emotional resources…we cannot take on the whole (damned) world at once. And that was my intent doing it this way. I told that to our Team Around the Child committee. I told it to our first social worker, our second and their supervisor. And they all agreed to those terms.
And then withheld information relevant to us…that the changes in SEN law, which happened in September 2014 meant the panel was no longer independent…and that the whole thing was now skewed. IF the first social worker, whom I did trust, had sat down and explained how this new system would work…maybe…MAYBE…we could have moved forward with both simultaneously. MAYBE!!!
BUT with a new social worker, who wrote things like ‘I need to be in education,’ as a goal in the support plan that would go to this committee for approval…how could we possibly trust that we would receive a fair hearing? Why accept their ‘bribe’ only to be told in the end…accept the school we choose or we won’t give you the support? Maybe they could not do that? But the thing people are not understanding here…this new law is a blank slate. All those tribunal rulings that upheld the fact that home educated families had the same rights to respite care as those whose children are in school…no longer directly apply. Tabula rasa…
The thing that worries me the most is this reply which we received to our complaint…
Since the introduction of the Care Act 2014 and Children and Families Act 2014 Education, Health and Social Care Services are now required to work in collaboration to pool budgets and devise EHC plans together to meet the needs of Children and Young People who have SENs or a disability. This became mandatory and legislative for all local authority councils in September 2014. The EHC panel was introduced on 20/01/2015, prior to this there was a Disabled Children’s Resources panel which was chaired by Operational Manager. The panel is independent in term of being situated outside of the Disabled Children’s Service.
Notice wording…mandatory…collaboration. What alarms me is that when I consulted with a home education consultant/advocate whom I trust implicitly, I was told that while they could not withhold the support, my complaint about the way they shared information behind my back and withheld information were ‘shaky’ under the new system.
What? Does that NOT concern other home educators? Next to Texas where on a couple of occasions the local sheriff showed up to escort the social worker off someone’s property because homeschooling was not grounds for abuse, the rules in England under the 2007 Department of Education guidelines on elective home education were fairly friendly. BUT if as in our case, these ‘independent’ panels can in the name of care demand information which parents are not compelled to give them under the guise of education then pardon my Texan…but they gots us by the short and curlies, folks.
What alarms me more is our case and several others that I have seen lately on home education social media sites. Take that in conjunction with the new Association of Elective Home Education Professionals, who has among its members a radical anti-home educator and professor Daniel Monk, and with the general trend across all of the EU (Germany, Sweden and France among others) to restrict or outlaw home education, and I feel like the gal in the theater crying “FIRE!”
To be blunt…as I always am…it might be inconvenient, it might not please PanKwake’s daddy much, and we might be financially worse off (or not)…BUT if worse comes to worse…no one can stop two American citizens from going home. Well, not unless they want to end up on every news channel back home and cause an international incident. Other people in this country ain’t gots that option. So we need to wake up folks…don’t keep ignoring it until it hits your door too. Unite.
Cause as my series last week Autism and Education: A Reality Check illustrated…the schools are letting our kids and us down. If we then loose or have our rights to help them the best way we know how restricted by the very people who failed them to begin with, what then? I go back to Texas (or someplace just as homeschool friendly back home)…what do you do? Maybe you will get lucky, the homeschoolers back home are fighting to bring a law through the US Congress right now that would guarantee asylum for home educating fleeing persecution/prosecution (I know dems two different words but both apply) for exercising their parental rights.
But I am standing up and fighting for our rights to educate otherwise in this country…especially…our autistic and special needs children who have already been let down by these people. Will you join your voice with mine?
The other day I shared Billy Joel’s “Just the Way You Are.” I said that was how I felt my 9 year old autistic daughter. April has been #autismawareness month, but I keep reading blogs and Tweets about awareness not going far enough. And it does not. Another incident at the park yesterday illustrates that.
It had been a darn near perfect time. PanKwake had found several people to play tag with…like three or four rounds of it. She had played in the sand…sharing her buckets and shovels too. I looked at her playing with children of a variety of ages even some around her own. I thought…you cannot even tell she is autistic. She seems as normal…and more polite, considerate than most of the other children.
That was it…I jinxed it. Because it all fell to pieces in an instant. We were on the basket swing with other kids. A smaller child in the group wanted a turn. I negotiated with PanKwake…she would push the younger child. But that was not good enough for the adults in this group. They were extremely belligerent and rude, got right in my face demanding,, ’what’s wrong with your child? Why she have to stay on all the time?’
Honestly, I felt threatened as there were two of them…one a man…and half a dozen children. I tried explaining, “Yes, she is special. She is autistic.” The man, who I had seen drinking alcohol earlier, said ‘what that mean?’ I thought…they don’t even know what autism is in this day and age? So I started to explain. Their response floored me… ‘So what? You just treat them normal. We know people who are autistic too.’
It deteriorated from there. Yes, I did my fair share of yelling too. Including calling the man a drunk and telling him a child’s park was no place for alcohol. And no, again, I do not regret it. People that ignorant will NEVER learn but maybe one of the hundreds of other parents, carers, grandparents and children in that park learned…this song….
That is my other autism song…the one I sing to the messed up world that thinks autistic people should be forced to be ‘normal’ or stay home.
This world and IGNORANT people like that will never learn until we do like in that video. As I have taught PanKwake, you first try to explain ‘special’ to the bullies (and sometimes this works…there are good people out there…even if I forget that sometimes). But if that don’t work…you BULLY the bullies. And you play to win…you do not back down…ever.
When all those with ASD and the people who love them decide they are tired of hiding and apologizing to this world…then and only then will things change. Cause…
“We’re not gonna take it. Oh no, we ain’t gonna take it anymore!”