This blog was published at http://www.themighty.com in August 2019
As another school year is close to beginning I recall a letter I wrote at the start of last year to my daughter’s teacher. I was worried about the year ahead and our ability to weather the changes Junior school would bring. We did of course. You can often do so much more than you think you can. But at the time I had a lot of sleepless nights.
Monkey has ‘high functioning autism’ . Functioning labels are often unhelpful as they do not take an individual’s strengths and challenges into account. And high functioning autism does not always mean autism is only a mild impact on the autistic person. Monkey 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. In so many ways we are truly blessed. But because autism is high functioning it doesn’t mean it doesn’t have problems. Things scare her that we take for granted. Things are beyond her understanding that we feel effortlessly. Emotions, interactions, things that are new or unexpected. All of them can cause her anxiety or distress. But she hates to say or doesn’t know how. And so I worry. I worry a lot, about very many things. And at the time I looked and looked for a good post online that would help me express myself. About what you want the teacher of your high functioning autistic child to know. And there just wasn’t anything out there. So I decided 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 frets unnecessarily. You might even think I’m a pain in the rear end. 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. I need you to see. 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 possibly even hug 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 screaming, tugging at clothes that chafe and rub and itch after a summer of only wearing clothes to go out a,nd 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 sad, or anxious, or angry. Tired means all those things. And she cries as 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 can’t work out how to play the playground games. So she waits and waits until she can come 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 t,rying 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 and 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 when 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. 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 in case the other children look at her. 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 may never find out as it will be lost in the general upset, or she will tell me something random as she feels like she has to give me a reason.
I respect teachers deeply. As a fellow professional I have felt the pressure of targets, and staffing, and just not enough hours in the damn day trying to meet the needs of way too many people. 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 minutes 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’ . 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, so if she’s in discomfort she wont say, and she maybe just needs a hand on her shoulder to soothe her. If she’s bouncy on the way in or out from the playground or laughing very loudly (very loudly), she’s entirely 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 until 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 daughter in terms of school at the moment. If she’s angry, worried or sad she has no qualms about letting you know. And if she isnt sure she sticks her hand up. If anything you 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 occasionally 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 and allow me to give you this letter in the way I mean it.
This is longer than the short poetic epistle I searched Google for. But it says what I need it to say. She may be high functioning and 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.
With all my thanks
Worried Insomniac Mum