I was cleaning out old photos from my Dropbox today. I came across hundreds of them from the small community nursery that PanKwake attended for two years. I was on their management committee, did their grants and monthly newsletters so that is why I had so many. But obviously, there was no reason to keep five year old photos of kids that we no longer even had contact with.
Do you know how many photos I found of PanKwake out of those three hundred plus? Less than a dozen in two years. Some children who were there only a few months had more photos than she did…and she spent two years there. And even the ones I did find…told her story…the story of autism/Asperger’s. She was alone or hanging back from the others. And that was why there were so few of her…none when the man brought the petting zoo, none on the circle time mat, even with Santa there was only one of her.
But what bothered me most was the three or four years of lost opportunity. You see that nursery was excellent. They recognized that the way PanKwake was developing was not ‘normal.’ They even did their best to get her the intervention that she needed…deserved…should have been provided. But all it resulted in was one hour with the council’s early years SENCo. One hour and the woman wrote a report that basically said…she would catch up. I still have that damned report.
How different our lives might have been if back then she and we had gotten the support we needed. But we did not…we waited four more years. Had to take her out of school and home educate her when the school too failed to see what I had seen since she was two years old.
Days like today are not easy…cleaning out old junk, not just the photos but the reminders they bring with them of…what if’s…should have been’s. But we will never know because that was not the path we were given. But looking at all those other smiling faces compared her more stoic was hard…a reminder. But forgiving that SENCo, the school, her doctors…and most of all me…for those lost opportunities takes a lot more effort than simply click and delete. I wish it could be that simple.
All I can do now is advocate for more early intervention/diagnosis of high-functioning autism/Asperger’s. But it will come much too late to help my PanKwake.
Sometimes I don’t know why I do it. Yes, I do. Because I want to give PanKwake as close to a ‘normal’ childhood as I can.
So yesterday found us back in Finsbury Park at ANOTHER fun fair. Having learned my lesson from last time, I gave us plenty of time with her carer…four hours. Plenty of money too. I also made sure to give her plenty of time warnings at half an hour, 15 minutes, 5 minutes.
And I thought…it worked, this is perfect, she is having a great time. Right up until the moment that we got outside the gate and her carer went to get on her bus.
Then she kicked off. Laying on the ground. Kicking. Screaming. Cursing. Trying to run away…with one of the busiest streets in London less than 15 feet away.
And all I could do was hold her feet to keep her from kicking me too hard or especially running into the street.
I do want to say…THANK YOU…to the half a dozen true heroes who stopped and genuinely asked…Is there anything I can do to help? You rock. To the other mothers of autistic children, who offered your empathy…thank you especially for sharing our encouragement.
But the hardest thing of all was not all those others who stared…somehow I have learned not to even see them. It was when she said…”You’re not my mother anymore. I want a new mother.” Don’t get me wrong…I know that she did not really mean that. That she cannot control herself when she gets like this. I know that…
But having lost a baby, a marriage, more than one job, and any hope of ever finding the one I wish with all my heart (there was a man who could just accept us for who we are and be there to hold me when all of it was over)…having given up all of that, getting up every morning to write so that one day hopefully I can give her the life she needs, having put strains on my relationships with my other children, waking up several times in the middle of the night to check on her…those words hurt. No, a knife to my heart would be a quicker, kinder fate than remembering that moment.
Of course, for her the most wonderful thing about autism is that once the meltdown is over…it is over. It took half an hour on that street…and another two of rambling streets looking for a ‘new family’ but when we got home she got a bath, ate and watched YouTube videos.
I, on the other hand, lay all alone in the bed just across the hall…and played those words over and over in my head until it throbbed. Not even an episode of Game of Thrones and tablets eased the pain…or erased the memory. Like I said…I know…I realize she does not mean it. Cannot control it. But neither can I just forget it.
As I told a friend…it is the law of emotional gravity…what goes up, must come down. And right now, she does not have the developmental capacity to regulate her emotions. I have studied child development enough to know that this is a brain maturity issue. And it is just a matter of time and patience. But what do I do until then? Do we stay home where her environment is more controllable and those types of meltdowns are less frequent and more manageable? But then how will she ever learn to modulate those emotional highs and lows if I do not give her those types of opportunities?
It is another day. I awoke tired…and emotionally drained. But the sun is shining…and it is another day…another opportunity. Today we are going with our carer to her favorite pool. I have it all planned, but then again I had yesterday planned too. So I recognize the futility of that. I am prepared for another one…as much as I can be anyway.
Of course, after today we have three days with nothing scheduled. Time for us both to rest and recover…from this thing we call life with autism/Asperger’s.
Last night I played in the park with PanKwake until almost dark. Looking around that park, only one other parent was as actively engaged with her child as I was. Just shy of my fiftieth birthday and I am running after kids between the ages of six and twelve with my arms splayed wide and giggling like a little girl.
Honestly, I spend more time outside, running and playing in the sand with her than I did with all of my others combined… more than I did as a child myself. I always had to be the ‘good girl,’ quiet and easy for everyone to love. Because of the autism, I give her…and ultimately myself…the freedom to be loud…to be free…to be a kid.
And honestly, I am able to do all of that because I am an older mother. I no longer worry about what people say about me as a parent…even when they say it to my face, I just get right back in theirs. She keeps me young. And despite all of the challenges we face, it is moments like last night that remind me…everything will be all right in the end. She is an au-mazing little girl…and I am lucky to have her. Meltdowns or not….
What’s in a name? that which we call a rose By any other name would smell as sweet.
Act II Scene II Romeo and Juliet by William Shakespeare
In May 2013, the DSM V (Diagnostic and Statistical Manual of the American Psychiatric Association) changed how autism was diagnosed. One of the biggest changes was that it did away with the diagnosis of Asperger’s Syndrome. Instead individuals like PanKwake are merely referred to as ‘high-functioning.’ But that is not accurate, fair or right to her…or to us parents.
The truth is that I have about as much in common with parents of those on the non-verbal end of the spectrum as I do with ‘normal’ parents…maybe even less so. I am not to discount their struggles. I am grateful that 90% of the time PanKwake can tell me what she needs/wants. I realize too that I have way more to be optimistic about her future than they may. I will not even pretend to say I ‘understand’ their reality…I do NOT. And I will not demean their reality with sympathy or pity. I will say I admire your courage on your path.
But what this ‘new’ and easier for the professionals diagnostic criteria fails to understand and capture is that the difference between my child and theirs is so great as to be on a different plane. The professionals claim that this is covered by the word ‘spectrum.’ That does not do it…this is no number line with non-verbal at one end and ‘normal’ at the other with PanKwake and Aspie’s somewhere in the middle.
It is apples and oranges, folks.
While I may have a small taste of the non-verbal struggles when PanKwake is in the middle of meltdown and cannot for the life of her tell me what she needs/wants. But I cannot appreciate the joy of exchanging a card for a glass of juice for the first time. Neither can that parent, whose child ‘looks’ autistic, understand what it is like to be judged every single time you leave your home. For your child to be ‘naughty.’ For you to be a ‘bad’ parent. When people can ‘tell’ something is different, they are most often compassionate, understanding and caring. They will go out of their way to help you. I learned that when I dated a man, who was wheel chair bound due to MS. But those exact same people have no problem looking down their noses on you and your ‘naughty’ child.
The truth is that autism is not that straight line…it is much more like this…three dimensional with as many points as there are individuals with it.
What is more this new model of one-size fits all linear ASD means that those like PanKwake are left on the outside looking in. I used to go to a support group called ASD4Tea. I quit because I have about as much in common with them as I do the local Mums club. We are dealing with different issues. But the organization that runs those meetings…gets to neatly tick off the autism box without ever meeting our needs. That is a hundred-fold more true for the ‘major’ autism groups is this country…they are all about the more severe on the spectrum. If you look at their newsletter, Asperger’s gets two-inches on page 3. We went to the Autism Show last year and probably will again this. BUT it is all about them.
And I hate to say it, but that is what lumping all of them together does….it creates an US and THEM mentality where we are fighting for different goals and resources. In fact, I was first inspired to write this by a blog I saw on my Twitter feed. The woman had three daughters at the other end of the spectrum. She was talking about how angry she got when she saw words like ‘acceptance.’ She specifically hit me hard when she spoke about seeing autism as a ‘blessing.’
I do…I teach PanKwake that she is a SuperHero…the real X-Men who like Jean Grey have super powers that she needs to learn to train. I even say that she is the next jump in human evolution…homo autistica. But I am changing that…homo aspergeria.
I get what this woman was saying…she fears what will happen to her daughters when she dies. I look forward to PanKwake growing up…believing that the older she gets the more she will have to offer us poor ‘mortals.’ I cannot understand that woman’s pain. But neither can she pretend to understand ours. And professionals lumping our children together is the same as putting asthma and lung cancer together. They may both cause shortness of breath. They may both affect the lungs. But that is about all they have in common.
It is not fair that woman has to feel angry about the word ‘acceptance.’ BUT neither is it fair that those of us with ‘high-functioning’ children are dismissed, expected to force them to just ‘act normal,’ go to ‘mainstream’ schools, and have no support group of our own. NO voice. Not to demean the struggles of those parents…but we have totally different needs and wants for ourselves and our children. And ACCEPTANCE for who and what we are is chief among those.
When PanKwake was first diagnosed, I was relieved that it was by DSM-V standards as ‘high-functioning’ (which is itself disrespectful to what…’low-functioning’?). I was happy because I thought it would make accessing services easier. But the more I learn and see the more I want to scream…IT IS F’ING ASPERGER’S! THERE IS A DIFFERENCE YOU, IDIOTS!!!
Because calling a lily a rose does not make it so…not all flowers are roses…and not all Asperger’s is autism.
Even though the rain this morning put a nip in the air, I know that summer is fast approaching…because today I sewed Emily some of her summer skirts. What many people do not know about autism is how the sensory processing issues effect everything you do…even finding the right clothes to wear.
Think for a moment about that really itchy sweater that Aunt Crazy gave you…the one that you just have to wear every time she visits and how it drives you as crazy as she is the whole time. Or remember when your shoes got soaked in that storm and your best friend thought she was doing you a favor by loaning you pair…after all what difference does half a size make anyway between friends. Well that is what the wrong clothes feel like to those on the autistic spectrum. But not just once in a while…EVERY DAY!
For parents of children with autism it makes shopping an even bigger nightmare…as if the florescent lights, background music/noise and crowds were not enough to worry about. But not picking the ‘right’ thing is an even bigger disaster…a meltdown…each and every time you try to make her wear it.
For PanKwake a deep and abiding hatred of socks and shoes was one of the earliest signs of autism. The wonderful community nursery that she attended when she was young worked for months to get her to keep her shoes on. Her brilliant keyworker finally succeeded when she named them Millie and Molly after her favorite TV cartoon characters. She told her that they would miss her if she did not keep them on.
But within weeks of putting her in Reception it was back to picking her up…barefoot. We lost enough socks that year to build a whole sock puppet world. Now the only shoes you can get her to wear are Crocs…even in winter. And socks? Are you kidding me? Only when we visit a soft play center and they make her or she cannot play.
It is tags and seams too though. I have to look hard to find tagless t-shirts. And underwear? The new knit seamless panties are about it. Nothing tight fitting either. Everything must be loose. When she was younger, she could manage sweat pants but never tights, leggings or jeans.
That is where her skirts come in. Three or four years ago I decided to see if she would wear them if I made them. She LOVES them. For one thing, all of them are cotton…a fabric that seems to soothe her. But equally or perhaps more importantly they give her a sense of autonomy. With these simple elastic pull on skirts she can dress herself.
The only problem is that this year even once summer was over I could not get her back into her loose sweat pants. She would only wear her skirts…even in the middle of winter. I can count on my fingers and toes the number of times we got her into pants this winter…and all of those were things like Disney on Ice that she absolutely HAD to do…had to = wanted to. I finally gave up and just took blankets with us everywhere we went to wrap her up so her legs would not get cold…remember leggings and tights are 100% no-no. Of course that meant, yet another thing for all these nosey people preach to me about what a bad mother I am.
So today I am back to sewing her more skirts as she outgrows them each year. But I cannot complain. Not only do I enjoy sewing up…the skirts take 1/2 a meter of material each so there is no cutting anything out. And they cost only £1 to £4. It is three seams…waistband with elastic, hem and then one down the side. Even with ironing, it takes me between 15 and 20 minutes to make one. Autism is just another reason I am glad I know how to sew.
This year…I got brave. Lately she has been being more brave/adventurous at least with her foods. So I thought what the heck…shorts and a t-shirt dress. Will she wear them? Probably not…but it is worth a try, right?
Next time you go clothes shopping for you or the kids, look around…that Mom with the screaming kid who is hitting and biting her, refusing to try on that shirt and screaming as if she were pouring boiling water over him…they just might be dealing with the sensory processing issues and autism like PanKwake. Instead of judging her and/or her child, give her the benefit of the doubt and a genuine smile. It might be the only one she gets that day.
Handmade skirts and barefoot…just another way that PanKwake and I are ‘dealing wif autism.’
I awoke this morning and like most days after checking on her it is was off to check emails. The very first one I notice is from one of my special needs home education groups…and it reads…A VERY Sad Day for Our Children. I opened it prepared to offer what support I could in whatever crisis this family faced….only to discover it was the ….. election results. This angers me on so many levels. Yes, our special guys and gals need all the help they can get. But what people seem to forget it is the VERY high price and low returns on that assistance.
If you missed it, read about our almost year long struggles with the ‘system’ here. In the end, we were bullied, lied to and had these people pressuring us to put PanKwake back into the very schools that had failed to protect her from bullies, failed to diagnose her autism, and treated us, her parents, like idiots and the enemy. We gave up…all we wanted was to be left alone.
As a result of all that time I had wasted I re-examined my life…
That little bit of extra money could never give us what we NEED, only what THEY want us to have.
The strings that come attached with it in terms of reporting and a revolving door of strangers in the life of a child with autism who experiences anxiety around new people anyway…was too high a price.
We are already stuck living in a city and a borough that is NOT what we want or need…but because of the system THEY will not help us…even though we could live somewhere else for half what they are paying here.
I have already been told by the HMRC that my chosen career path as a writer is not viable…that sent me into another of those tale spins.
The truth that no one wants to see is…if you want to save your child…yourself…it is up to YOU. I was reminded of this photo that I copied the other day from Facebook.
We know what our kids’ need…not the government…not the schools.
We know what works for them…not teachers or psychologists or social workers.
We are the only ones that can see past the labels to the bright and beautiful gifts they really are…to everyone else they are just numbers…1 in 88, £8250 for personal budget, £20K for special school place.
We know what’s best…
And we need to quit looking to others to save us. We need to save ourselves…and our kids.
And that does not change if it is Conservatives, Labour, even UKIP…for my Americans…Republican, Democrat or Libertarians. In the words of Ralph Waldo Emerson…
A political victory, a rise of rents, the recovery of your sick, or the return of your absent friend, or some other favorable event, raises your spirits, and you think good days are preparing for you. Do not believe it. Nothing can bring you peace but yourself. Nothing can bring you peace but the triumph of principles.
Is today a sad day for our children? Yes, because we are wasting time moaning about an election result instead of embracing the bold new world of opportunities which the Internet provides for us…and them.
I shared a couple of weeks ago that my only concern with our unschooling approach to home educating PanKwake is reading. Specifically, that at nine years old she still cannot read and does not even know all the letters of the alphabet. This from the child, who can hear a word once in context and forever after use it properly. This from the child, who can remember something she heard about science or history. But her neural pathways will not allow her recognize letters? To the point that she avoids even looking at the words when I read to her. Add to that mix the fact that Mommy is a writer…and you can see why I am so insecure.
I keep reminding myself that I did not read until I was ten. That my two older children did not read until they were ten. That we are all bibliophiles now. Added to that I remind myself that the Asperger’s Experts, two young men who understand high-functioning autism from the inside, say that somewhere in the teens or early twenties things just click in the brain of the aspie and that they surpass the NT (neurotypical). I console myself that even if she does not ‘get it’ until then that she will learn reading when her brain is ready the same way she learns everything else…absorption. That is after all why we unschool….because it works for her.
BUT still I feel like a bad mother. A bad home educator.
Then I had coffee with my older daughter, who has spent five years working as a teaching assistant, working in schools with other children like PanKwake. She is now going to university to become a teacher. And there has been such a marked difference in how she sees my home educating her sister. When she was working in the schools, all I heard was what I was doing wrong…how her sister needed to be in school. I will never forget the morning about a month after she started uni when I got a text that said… “I am sorry, Mom. What you are doing with PanKwake is just right.” Because when she learned the theory behind learning and child development…not National Curriculum…she saw things very differently.
I thought things could not get any better than that…until we shared that coffee. I brought up my insecurities…and what she said floored me. She reminded me that I always say PanKwake and others on the high-functioning end of the spectrum are the next jump in human evolution, the true X-Men…homo autistica. She said to me, “So why don’t you see that she is the next generation reader too?” She went on to explain that reading is about taking in information, analyzing and processing it. She asked me a brilliant question…who is the ‘real’ reader the child who take an hour to read one page but understands everything that was said…or the one who reads two chapters and cannot tell you anything that is happening? We stood up and hugged it out…right there in the coffee shop.
It was just what I needed to hear. When I read to her PanKwake can understand the whole story…she will even remember if you get something wrong. With the exception of hypothetical questions like…what do you think happened next…or how do you think he is feeling…she can answer anything you ask her. But those questions are kickers for anyone on the autistic spectrum.
And one day…some day…in her time…the rest will come too. Thank you to our beloved Mere-Mere. You are the next generation teacher…and maybe if I could guarantee PanKwake would have nothing but teachers like you…I would not need to home educate. I love you and am proud of you.