A shorter form of this blog appeared on The Mighty previously. This is the original blog in it’s entirety. My little girl, who I name Monkey, has had 1.5 successful years of Junior school behind her now plus 6 months of COVID necessitated home school. And she’s come so far since the 1st day of Juniors when I made the decision to write this letter. But my worries and some of the thoughts expressed in this blog never entirely go away. So if you too are about to send your precious youngster with additional needs back to school you may relate.
Blog slightly updated to reflect on school with social isolation
It’s well gone 3am. My kids think anything past 6am is time wasted if it is time spent in bed. I am going to deeply regret my late-to-bedness in T minus 3 hours and 5 minutes (Or so).
But I’ve been randomly flicking through pages on Amazon, procrastinating. Prevaricating about the thought of the morning school run. Adding a good 30 items to my watch list that I just know will sit in the list, unwatched, for about 5 months then will be deleted so I can watch some different crap.
It’s not about the shopping. I’m worrying. Whilst functioning labels should be highly obsolete as they do not tell the true story of an autistic person’s needs and abilities, Monkey has, for want of a better descriptor, what most people would understand as high functioning autism. She is (very) verbal, she can wash and dress, brush her teeth herself. She can read, she can write, she is in a mainstream school and she has friends. She is even beginning to crack tying her laces and telling the time, though I won’t stop buying boots with zips up the sides yet. In so many ways we are truly blessed.
But just because autism is considered by society to be high functioning it doesn’t mean it doesn’t have problems. (And therein lies the issue with these labels, a discussion for another day) Things scare her or cause her pain that the rest of society who are ‘neurotypical’ take for granted. Things are beyond her understanding that you feel effortlessly. Emotions, interactions, things that are new or unexpected, simple subtleties of speech or humour, conversational nuances, the ability to adjust to changing occurrences and process the change. All of them cause her anxiety or distress. And none more so than this confusing time. But she hates to say or doesn’t know how. And so I worry.
I worry a lot, about very many things. But tonight, or more accurately this morning, I’m worried about school. We are switching back from our easy going holiday routine to needing to be out the house and things being done in set time frames. And she’s going to be a junior. So many scary things. And I looked and looked for a good base/poem/image for this post. About what you want the teacher of your high functioning autistic child to know. And there just wasn’t anything out there. So I am going to have to write my own.
You may or may not be fed up of me within the next six months. You may think I’m that parent who is fretting unnecessarily. You might even think I’m a pain in the arse. I don’t blame you. I would if I were you. And you might not see the things I am trying to get you to see. But that is why I need you to really ‘see’
I’m trusting you. I’m placing the learning and daily wellbeing of my child into your hands 6 hours a day, 5 days a week. So I need you to understand. I need you to understand that a ‘high functioning’ label and a bright smile doesn’t mean my little girl is always doing ok. She is a skilled actor, my little one. She will breeze into your classroom nearly every morning and ask for a job to do before going to her desk. Because that’s her routine and that is how she feels secure. She will smile and, in past years, would have even hugged you.
You will wonder how I can look so harassed, because my little girl has put her school mask on. You won’t see the complaints of headaches and stomach aches before school. You won’t see the crying because you are new and unknown, and she misses last year’s teacher who was safe and constant. You won’t hear the distress in her voice when she begs you not to go outside because outside isn’t safe in case somebody takes all her precious things that make her feel safe while she’s gone. You won’t hear the screaming – tugging at clothes that chafe and rub and itch, after a summer of only wearing clothes to go out, and otherwise enjoying bare skin with no itchies. Or me sitting with a tactile cushion calming the screams, sitting with her little hand rubbing the sequins backwards and forwards, backwards and forwards, until she is calm again. When she tells me she is tired and I can’t work out if that’s really tired, or instead she means sad… or anxious… or angry. Tired means all those things. And she cries because she tells me she doesn’t know HOW to calm down or she can’t explain what this feeling is. We deal with it all between the hours of 6am and 830am so she can walk through the school gates with a big smile.
And all day she will seem the same – happy, willing. You may wonder how I can tell – simply by the way she walks out of the classroom – how pent up she is and if we are going to have a bad afternoon. Because she has had her school mask on, all day. Maybe somebody has bumped or pushed her. Or she cant work out how to play the playground games. So she waits and waits til she can home and let it out, sometimes with an innocuous spark setting off an explosion.
So I’m asking you to take a second look at her sometimes. See her tugging her clothes quietly, surreptitiously, quite possibly unconsciously trying to deal with the sensory irritation. See her smile is just a bit TOO bright, because she’s working out what to do next, because she’s afraid of getting it wrong, looking for someone to mimic. Hear her stutter, an end word stutter, unusual to catch on the last syllable of a word but sometimes seen in autistic children that crops up in sentences whem she is excited, tired or has more information in her head than her mouth will allow her to express. It could be that she needs a pause, somebody to remind her to breathe and let her mouth catch up with her brain. Or vice versa. . See how she might be withdrawing, appearing to be quietly working, but her muscles are hunched and tense as she leans over work she’s not quite sure about, but doesn’t like to ask. See that sometimes her jumping up and down may not be excitement, but anxiety at a new or unexpected situation. Or an overload trying to understand playground sociabilities. She often ‘stims’ by jumping. She might even mooch around the playground and seem happy in her own company, despite feeling lonely and not knowing how to join in, as her preferred method of shoving her face straight into somebody else’s doesn’t always go down well.
She probably won’t ask you for the ear defenders I’ve provided, or the tangle toy. She doesn’t want to speak out. So she absorbs the noise and stress. Then when she comes home her sister will play a game ‘wrong’. Or I will give her the wrong coloured plate. And suddenly I have a whirlwind screaming her way up the stairs crying. And sometimes it can take an hour for her to tell me she was lonely at playtime, or somebody bumped her. Sometimes it can take a day. Sometimes I will never find out.
I respect teachers deeply. As an ex fellow professional I have felt the pressure of targets, and staffing problems, and just not enough hours in the damn day trying to meet the needs of way too many people, with way too few resources. As far as I’m concerned a good teacher is a gift from God as you make so much difference. And you have 30 other little jumping, shouting, squealing, questioning, laughing little ones needing you to help them learn. And every parent wants what I ask, for their child’s voice to be heard, their feelings seen. But please take a few moments a couple of times a day to see my Monkey.
If you are finding the classroom noisy I can assure you she is in discomfort, her head will be ringing as she tries to get on with her work, too afraid to stand out by raising her hand to ask for her ‘denders’ – her ear defenders. If she’s quiet but she’s fiddling furtively with her clothes she is in discomfort – it doesn’t take much for her, she’s very tactile – so for example when she’s upset I know to rub her hair or stroke her face to soothe her. You can’t do that I know, and even more so now than ever before. So if she’s in discomfort she wont say, and she maybe just needs a smile or a word to soothe her. If she’s overly bouncy on the way in or out from the playground, or laughing very loudly (very loudly), she’s possibly anxious or overstimulated about socialising or being outside, but trying to roll with it. She’s not keen on outside, it doesn’t have walls to make her feel safe. But she probably won’t say.
If there is a sudden change of plan that upsets her she probably wont say. During trips she will be anxious and overwhelmed at times, but everybody else is having fun so she needs to as well as far as she’s concerned, so she will mimic that ’til she’s ready to explode inside. Despite social stories, despite feelings pictures, she just doesn’t like to, or know how to, express the frustration, anxiety, and discomfort to you. So she puts on her school mask and leaves it til she sees me.
I miss her and worry about her six hours a day, 38 weeks a year and I’m trusting you with one of my two most treasured gifts. I worry less about my other one in terms of school at the moment though secondary has thrown me for it’s own sneaky loop by introducing whole new scenarios to fret about. But if my oldest is pissed off, worried, or sad, she has no qualms about letting you know. And if she isn’t sure she sticks her hand up. If anything her teachers may have to tell her to pipe down and concentrate. And she will go out at break excited to play with her buddies. I worry about her but I know she has so many more life tools. But Monkey? Well if you can take the time to look with fresh eyes at the subtle clues, you may not know how huge a difference you will make to her day. And to me, her dad and sister, when she comes home with excitement about her day. Though you may need to tell me what she’s doing as she compartmentalises. So once past the gate, school is closed for the day and I am unable to get much information. So please bear with me if I’m asking lots of questions, and try not to brush off my worries. I have a piece of her heart and she has most of my heart and soul and I know her inside and out. Please trust me. I’ve fought for her all her life and I’ve met some amazing teachers who haven’t made me have to, and you all have my respect for that, and for the difference its made to her when you have gotten to really know her.
This is longer than the short poetic or Pithy epistle I searched Google for. But it says what I need it to say. She may have lots of practical skills but she’s still confused by the big, wide world around her, and doesn’t know how to express it. It would mean so much to us both if you are able to understand that.
I look forward to you getting to know my baby, and finding out all the wonderful things we already know about her. And I’m thanking you in advance for being patient with me. And for my part I will do my best to only butt in if I have to and trust you to do the rest. Thank you.
Worried Insomniac Mum