This is a story about everyday life, where the reader will meet Miss Myself, a very young girl with profound and severe disabilities, and two assistant teachers: Mrs. Redhaired Curl and Mrs. Somebody.

A day in my life

The alarm is set for 6:30 a.m., but I’ve already counted all the stars. I’m ready. My eyes scan the room, waiting for the hands I like best. Warm enough. Firm enough. Slow enough. Fast enough. But most importantly, the hands that sing. They sing a bit deeper when taking off the diaper and a bit lighter when putting the clean one on. There’s a lot I could say about your singing voice. I think: She’s never going to make it into the choir, no, but with her, my day can begin. Trallalala.

My parents have night shifts a few days a week. It’s good that they get some sleep. Mum and Dad are still sleeping, and today someone else will take care of me. I hope it’s Mrs. Redhaired Curl. Yes, I notice her smell and the way she enters my room. Quietly approaching, with a few soft sounds. She’s coming!

Some time passes, but it is good time. Mrs. Redhaired Curl talks with me, sings a little and tells me what she’s doing: tidying up, cleaning the wipes. It’s not really interesting to me, but I like the tone of her voice. Soft and gentle.

Finally, it’s time to go to childcare. I’m going to childcare! Driving my car. A big one. There’s no way the children at the childcare can miss my arrival. They run to the gate, lots of voices, and they touch my leg. They say good morning. One of them strokes my cheek. I flinch a little, but deep down I love it. I just have to play a little hard to get. But they’re not easily scared off. They roll me into the room and onto the mat. They drive cars around me. I stretch out in excitement, wanting to join in.

Mrs. Somebody says to a child: “You have to be careful.” Then I get the mirror carousel. Mrs. Somebody says it’s more appropriate for my ‘level of functioning’, or so they call it. But it’s dreadfully boring. How can I tell them I want to join the rally?

The orthosis must be applied. If all the Mr. and Mrs. Somebody gave me the sign in the same way, I’d understand a little faster that the orthosis is about to be put on.

But suddenly, there’s that strong grip. My body remembers, but it still flinches every time if they don’t tell me what is going to happen beforehand. That way, I can talk to my body, tell it to calm down, breathe slowly. It’ll probably be fine afterward. With the orthosis on, I can stand and grasp the world in a different way than when I am lying down, with everything coming from above.

Food, yes, it’s time for that, and it takes time. What happens while the time passes? It slips away for some. For me, it comes. The cauliflower soup! They never forget to let me smell the cauliflower soup. Then they can proceed with the PEG part of the food story. It’s good to know what’s coming through the little tube.

I have to rest. I like that, because Mrs. Redhaired Curl lies down with me and strokes my chest and thighs. She doesn’t want to do anything more than just be there. I hope no one thinks she’s lazy for simply lying there, because I love it. She winks at me, and I wink back.

When we play together – a little wink back and forth. I’m sure Mrs. Redhaired Curl asks herself if she has really crossed the boundary and if I have truly let her in. My voice is humble, low. My expressions are subtle. She understands that one of the most important things bringing us together is to respond without thinking about words. I need a good person with good time by my side who lets the language behind.

This is a good siesta for me. You understand when the wink transitions into a play that wakes me up. You just slow down and bring me into siesta mode. I sleep and I don’t sleep, I shudder a little, I wake up, smile and close my eyes again just to reassure myself that you are there and that you’re thinking, “you and me”.

She doesn’t fuss over me. She looks at me. Does she think I’m beautiful? She opens her hand and waits. I want to take it. It takes a bit of effort not to miss it. Yes, now my little finger touches one of hers. She has so many. It’s like the fresco by Michelangelo!

She sees more; she sees everything. Everything I do is like landing on the moon for Mrs. Redhaired Curl. We land and bounce along with smiles on our faces. Then she suddenly notices that my stomach is cramping. How does she do that? She lifts me up, sits me on her lap, and I let out a fart. It felt good that she noticed it. It didn’t smell nice, but she laughs it off, waves it away and lays me down again. I think that I’m lucky. Sometimes I wonder if she thinks the same.

After a pause, Mrs. Somebody places me in front of a window. She has decided that I love sitting there. There are trees and some mountains in the background. I am Norwegian, so I must like trees and mountains. Christmas trees are the best, though, when there are lights and colors ... and then it smells of clementines. Christmas clementines. But now it’s not Christmas, and the trees behind the window look like they’re stuck to the glass.

How can I tell her that I would prefer the other window where the caterpillars crawl up and down? Mrs. Somebody assumed that it's best for me not to be exposed to noise. Does she ask me about how boring Norwegian forests can be?

I will tell you a story. Do you have time to listen?

Mrs. Redhaired Curl lives on a farm. She has hens. One day, we trundled along – me in my wheelchair and she behind me. It smelled strongly of the barn. Then I knew with certainty where we were. She took a hen and placed it on my lap. At first, I was startled, but then it was warm and cozy. I calmed down and became an excellent “hen-caretaker”. After a while she lifted the hen … and guess what? There was an egg in my lap. She said something about frittata and was so excited. There are comfort dogs, but I have never heard of comfort hens.

I felt that it was getting colder and stretched out my legs. I hit Mrs. Redhaired Curl right in the stomach. I got that. She screamed, “You naughty girl!”, but she didn’t mean it. I know that. We drove home with one egg in the basket.

Home again. Changing the diaper. Mom and Dad are home. They always have time to take me on their laps. I notice that I’m growing up; I’m getting heavier, but inside me, I’m a light feather that always wants to slip into your lap, Mom, to hear your lullaby, and into your lap, Dad, to hear your deep voice and to pull your beard.

Dad’s lap begins to move, so I have to readjust myself. He helps me. “Now we have to eat”. He says “we”, but means me.

My food disappears into my stomach. I feel satisfied, but I wonder which taste they chose today. My mom remembers to put a little bit on my lips, and my dad lets me smell it. That’s enough for me. Sometimes they forget … that’s okay. Parents have their heads full of thoughts.

They are concerned that nothing will happen after dinner. They are wrong. A lot is happening for me: the sound of plates and cutlery, my siblings running, coming close to the wheelchair. I startle. Suddenly they are gone again. Sounds from the TV. I want to watch TV, too, but they have decided that the mirror carousel is better. I cannot understand what is on TV anyway. BUT do you know why I want to watch TV anyway? I want to sit with these noisy siblings of mine.

Time for sleep … again. Back to my room. I can smell the particular soap and the curtains, the air from the farms nearby. I’m in my room. Soon I will look at the stars. How many will I count tonight? I will try to be a little mischievous tonight. I don’t want to sleep. I want a counting buddy with me. Imagine, if Mrs. Redhaired Curl could lie here now. Do you think she’s thinking of me? Is she lying there counting the stars alone? If so, it’s just the two of us.

Tomorrow I’m going to daycare again. Hurrah! I will meet Mrs. Redhaired Curl. Sometimes I think she perhaps quit, she could be sick, or she will need a day off. This is the reason why Mrs. Somebody must apply for a passport.

Application

I do not know where the office is, but somewhere in town there is the possibility to apply for a passport to an unknown country. They will ask you for the motivation to travel. Just say, “Miss Myself sent me. I want to go to Miss Myself’s country. I want to learn her language”.

I hope that Mrs. Somebody really wants to learn what she needs to enter my country. The first requirement is to learn my language, the importance of the closed language. The second is being before doing, the goodness of skin-to-skin contact. And the third is all the possibilities in the forest of senses.

These three things are what she needs for the passport application process.

1. Learn my language: the closed language

The closed language develops when the interacting partner (the Other) reacts to all of the child’s expressions – breathing, sounds, movements, muscle tension, etc. – and creates a dialogue through adaptation. There are three different types of dialogue that fulfil basic needs. We call these tasks: the self-regulating Other, the harmonic Other, the supportive Other. Close contact!

• The self-regulating Other concerns the regulation of basic functions (wakefulness, breathing, food). We help the children to be present with their body, sit well in the lap, compose their bodies so that they are able to focus on what is going on.
• The harmonic Other is concerned with harmonising the dialogue, when the child and the Other interact with each other, adapting to audible expressions in rhythm and strength (oi, oi, how high the swing goes!).
• The supportive Other is present and attentive to what can capture interest and bring it to the child’s attention and possible area of action (it smells nice, yum yum). The supportive Other learns to expand the dialogic function.

2. Cheek to cheek – skin to skin

The skin is the largest sensory organ we have. The skin equals 2 m². Mrs. Redhair Curl never let me feel alone. She helps me to produce oxytocin.

Oxytocin is the hormone known as the closeness/love hormone; it is activated by physical touch in close relationships. When it is activated, I become calmer in my body, more present, feel safer, and I understand better what’s happening around me. I become stronger and don’t get sick so often. I eat better. I breathe calmly and feel that life is worth living. I almost forget the pain.

But on some days, I’m grateful that there are small round white things you can crush into jam. That we can lie still in the dark. That we can change plans and just take it easy.

You understand things that aren’t visible. Freezing toes, socks that are too tight, toes curling into cramps, well hidden in shoes. Air in the stomach, cold fingers, awkward sitting positions. You know about the Botox injection in the salivary gland … dryness, yet so much wetness around my lips. It feels so wonderful when you wipe it off gently, as if it were your own lips.

3. Senses

Sometimes you think that I need a sensory diet: You cover me with colors, smell, taste. Many funny textures and things you find at the one-penny market. But you know you must ask me first. I have many secrets. Every smell can be a memory. Please ask me if this is a good or bad memory.

I have something called CVI. That means when I see a clementine, it doesn’t mean anything to me until I’m allowed to touch it, smell it and taste it. At that moment of contact, the clementine becomes visually interesting to me, takes shape and leaves traces in my body.

I can’t reach the fruit tray. I need your help, but first you must know that I love clementines. Clementines, yes. Kiwis, no, thank you. I told you that. You saw that I purse my lips and make a funny face meaning “I hate kiwi”.

The silence of the senses can sometimes be exactly what I need. Don’t ask me. Don’t comment on everything. Let us be in “the sense of silence”. Let us go deeper in the “sense of less”.

My bucket list

I wrote my bucket list for you. You must present that together with the application:

Play with me. Winking back and forth is a play. Play is not just plastic stuff, bells and rattles.

Let me play with other children. They see me. They think in a normal, disarming way.

Make everyday routines to rituals. Eating to a feast and diaper changing to a SPA moment.

Let me breathe the air you breathe. Extend my space and bring me out into the world.

Let me have the medical care I need so that my pains don’t wear me down.

Love me as I’m.

Ena has written this. She could not have done it without all her encounters with many children and their families. She met Mrs. Myself, Mrs. Redhaired Curl and Mrs. Somebody. She met Turid Horgen and the people of Dronninglund. Lucky her and lucky me. She apologizes: there are still few men in this world, just my dad. This is my real world.

References:

LL-497: Ena Heimdahl om møtet med barn med multifunksjonshemming - Lektor Lomsdalens innfall | Lyssna här | Poddtoppen.se

En sanselig vei til den gode samtalen | statped.no

Den inkluderende samlingsstunden | statped.no

https://youtu.be/Asv5o9lyIRY       (about the good mealtime)

Ena Caterina Heimdahl and Helene Fulland: Small projects at a snail’s pace – small for whom? I Togetherness in Play and Learning- Special Needs Education in Mainstream Settings. Statped Antologi 2020 togetherness-in-play-and-learning-special-needs-education-in-mainstream-settings-web-ensidig.pdf

www.statped.no

Author:

Ena Bolognese lives in Oslo and is a Senior Adviser at Statped (a government agency for special education) at the Department of Complex Learning Difficulties – Division of Early Childhood Education and Care.

Hinweis: Die deutsche Version dieses Textes finden Sie in der Ausgabe 4/2025.