April was Autism Awareness month; and Autism: In Our Words put together a ‘photo a day’ challenge, to give a glimpse into every day life on the spectrum.
I really enjoyed sharing insights into our world on Facebook and Instagram, so I thought I’d put it all together here in one place.
Please feel free to share this post, and help spread awareness on the complexities, beauty, hurdles and joy that life on the spectrum can bring.
1/ Acceptance. Best friends
2/ Play. Whilst some children on the spectrum struggle with creative play, Milla was blessed with a vivid imagination. She has dressed up for a ‘surprise party’, and is busy cooking baked beans and ice cream.
3/ Stim/Ritual: Bedtime ritual~ Next to bed goes face washer, drink bottle must go behind tissue box, Gro clock must be turned away. Two songs, Baa Baa Black Sheep then Twinkle Twinkle. Kiss and a cuddle. Fairy lights go off, music turned on, and put on repeat so it plays all night. Another kiss and a cuddle. “Goodnight, I love you, sweet dreams.” Exact same order every single night.4/ Comfort item. Vibration pillow. Milla carries this pillow when we are walking somewhere. The noise of the traffic causes her massive anxiety and distress. When she is feeling scared, she squeezes her special pillow, which vibrates. The vibration shifts her focus from the sensory overload of the traffic, and calms her anxiety.5/ App. Not only an educational tool, Milla uses the iPad as a way to wind down and refocus when she becomes overstimulated by the ‘outside world’. Her favourite apps are the Dr Panda series, where she can role play every day activities; going to the Drs, childcare, gardening, housework ect. When her own world often feels chaotic and scary, Dr Panda provides safe places where Milla is in control, and the outcomes are predictable.6/ Main obsession. Strawberries. Milla will eat 1-2 punnets of strawberries a day. It’s the only food that she is guaranteed to always eat, as long as they are ‘prepared’ properly. Tops cut off, cut in half, absolutely no white visible on the outside flesh.7/ Joy. A girl and her daddy, sun above them, sea beneath them. 8/ Breakfast. Milla is not motivated by food at all. She can take up to 2 hours to eat a meal, and needs constant prompting; “Keep eating.” “Take another bite”. On mornings we don’t have to be anywhere, I make up a ‘snack box’ that Milla can graze on throughout the morning. Saves us both a lot of frustration!9/ Sleep. Milla almost always goes straight to sleep at night, thanks to a very tight ‘bedtime’ routine. It has been exactly the same for the last 2 years or so. We recently introduced a chart, each step is illustrated with a visual cue, that can be removed with Velcro after it’s completed. In time we can try and introduce some flexibility into the routine by switching the order of the steps. Currently the order is; dinner, bath, naked play, pjs, milk, 3 books, then bed. From start to finish the entire routine takes 2 hours.10/ Favourite colour. If you ask Milla what her favourite colour is, she’ll tell you a different colour every time. Looking at her art wall, she seems to favour vibrant colours, with lots of pinks and purples.11/ Secondary Obsession ~Dinner rules. Milla will only eat cooked food if it is room temperature. So every night I cook dinner, then put hers in the fridge for 10 minutes. Even if the food is slightly warm to touch, she won’t eat it. There is a select list of foods that Milla will eat, so I just rotate the same 5 dinners each night. Dinner is served on a segregated plate, and each different food is not allowed to touch. There also needs to be a separate utensil for each food.12/ Spinning. Milla loves to spin around in this swing at her Early Intervention centre. A lot of children on the spectrum use spinning as a way to self soothe and to block out an overload of sensory input. When Milla was younger, and feeling anxious or overwhelmed, she would spin around and around for ages. Used to make me feel dizzy just watching her.13/ Therapy. This is Milla with her occupational therapist, who she sees fortnightly. They work together on Milla’s sensory processing issues, through role play and games. Her O.T will create experiences that are outside Milla’s comfort zone, then assist her with coping strategies and tactics to remain calm. Milla also participates in early intervention weekly, which this term will be focused on 1:1 therapy with a speech pathologist. We are starting with a new psychologist in a few weeks, to work on Milla’s anxiety, which will be alternate fortnights to her O.T. 14/ Playing. Milla met Lucas in mothers group, not long after they were both born. Even though we moved away before Milla’s first birthday, they still share a special bond, and spend hours playing together whenever they get the chance. 15/ Happy. Milla loves jumping on the trampoline she was given for Christmas, however has high anxiety about playing in the yard. She finds it difficult to cope with the unpredictability of noises and the sun and clouds casting different shadows and light. This morning she managed to spend 10 minutes jumping in the sunshine, which made us both very happy.16/ Sensory. When Milla first began OT, she refused to participate in messy play. Through gentle encouragement and continued exposure, she can now tolerate her hands getting messy for short periods of time. In this picture, Milla and her OT are having sensory play using shaving cream. If you look at her left hand, you will notice it’s splayed open. This is her usual response to the right hand being dirty. If you look closely at pictures of Milla at the beach, she holds both hands splayed as a reaction to the sensation of the sand. 17/ Everyday Food. This is what Milla has for ‘second course’ every day after dinner. Strawberries, 4 tiny teddies, 1 jellybean and 1 vitamin. Exactly the same, every day.18/ Must have. Sunglasses. Milla is very sensitive to light and won’t go outside unless she is wearing her sunglasses.19/ Sad. Some days Milla wakes up, and her world has tilted slightly off centre. On these days she can’t cope with anything, and everything is a challenge for her. We cancel whatever plans we had and stay home, tiptoeing around in an effort to keep the peace. On these days life is unpredictable. The sounds could be too loud, the clouds the wrong colour or moving too fast. The cat might not sit where Milla expected it to, the characters on the TV do the wrong thing. There are meltdowns and tears and Milla can’t tell us why. So we grit our teeth, put one foot in front the other and just get through the day. When we finally tuck her into bed that night, we kiss her goodnight and have faith that tomorrow will be a better day.20/ Team. The three of us make the best team. As long as we have each other, we can overcome any hurdle.21/ Fear. The world is a scary and confusing place for my girl. Every day she gets up and faces fears that we can’t even understand. “There can be no courage, unless you are scared.”22/ Outside. Milla has always been a nature baby. She loves being outside, and exploring. We are lucky to live in such a beautiful part of Victoria, every weekend we discover new places to have our adventures.23/ Favourite game. Milla loves ‘Memory’ games, and is ridiculously good at them. She has an amazing ability for recall and was able to play (and win!) memory games before she could even speak.24/ Pet. This is an older picture of Milla and our cat Star, but one of my favourites. Star is a 14 year old cantankerous chinchilla, who has no patience for anyone except for Milla. They have a beautiful relationship, and Milla must say goodnight and tell Star she loves her before going to bed every night.
25/ Train. I’ve got absolutely nothing for the prompt ‘train’ so thought I would just share a random fact about Milla instead. Like a lot of people on the spectrum, Milla learns best through visual cues. One day she was staring at her drink bottle, which has her name on in, and suddenly said, “M I L L A. That says Milla.” From that day on, she has been able to spell her own name, unprompted. It just amazes me how her mind works, and how much information she takes in without us even realising. 26/ Dinner. Milla is tired and strung out from ballet this morning and speech therapy this afternoon. We didn’t get home until after 5 tonight, and I could sense a breakdown was imminent. I made a last minute decision to abandon plans for cooking dinner, and quickly picked up some takeaway instead. You do what you have to do to get an over stimulated little lady through her routine and into bed, as painlessly as possible.27/ Paperwork. I’ve been saying for 18 months that I need to organise all the paperwork for Milla properly. But then I keep getting more, and it just keeps getting heaped on the pile. Strangely enough, ‘filing’ is not huge on my list of priorities… 28/ Car. Milla has very high anxiety around roads and cars, to the point were we could not leave the house without tears and hysteria. I don’t drive, so to walk anywhere became near impossible. Working with Milla’s OT, we came up with several strategies, including the use of the vibrating pillow to distract from the noise of the traffic, and taking these pictures to include in a social story. 29/ TV. Poor Milla still lives in the 90′s with her old box TV in the playroom. It’s not even connected to an aerial, she just uses it to watch DVDs whilst she is ‘resting’ on the couch after lunch. (We use the term ‘resting’ very loosely )
I dream a little dream for you, my darling Milla May,
I dream of the kind of woman you will become once you are on your way.
A woman full of strength and grace, who holds her head up high,
A woman who believes in herself and never wonders why.
A woman people turn to when they need to laugh or cry,
A woman who lights up a room, without even having to try.
A woman who will always be my little Milla Moo
My darling daughter, I’ve waited my whole life for you.