My Life Was Consumed By My Daughter's Autism
Lottie Linell Emotionally Reveals How She Learned To Cope—And Find Happiness After The Diagnosis
By PJ Feinstein
Before she turned four, Issy was already demonstrating characteristics of sensory processing disorder and pathological demand avoidance. “It was beyond the ‘terrible twos’ and beyond comprehension that a child could go from being a really happy, smiley little girl to [having] violent outbursts, panic attacks and being in such distress over the smallest things,” remembers her mother, Lottie Linell.
It took two years for Lottie and her husband, Nathan, to get a referral for Issy to see a specialist where they live in England. They were hoping an autism diagnosis would relieve them of some of their stress. “If she was ASD, we would get the support we needed, she needed,” explains Lottie, 39. “It wouldn’t have been us failing as parents, and it would it would all make sense.”
Instead they experienced shock, followed by sadness, guilt, and grief. “Everything changed that day. I lost a part of me -- my confidence as a parent and some of my joy,” she says. Lottie still wonders if Issy’s difficult birth might have caused her autism and worries that she has failed her daughter.
While the guilt has eased a bit in the year since Issy’s diagnosis, Lottie, 39, doesn’t think it will ever go away completely. “Autism is a lifelong condition. It’s unpredictable,” she says. “Even if you read everything on ASD, put everything in place that is supposed to help, and support your child . . . a happy moment can change into an awful one in a split second.”
She also admits that constantly being on alert is exhausting: “It’s like having a hangover everyday. A mental hangover.” When she has the energy, Lottie likes to clear her head at the gym; however, sitting with a cup of tea (“very British!”) for five minutes “can be a good reset,” she says.
“I am not very good at putting myself first, but it is so important, especially as a parent to a child with additional needs. You need to make time for yourself to recharge and not lose your identity.”
What's the most difficult thing about raising a child with autism?
That people don’t get it. Issy doesn’t “look autistic” -- she walks, she talks. So they think you are exaggerating or you’re just making it up. “She seems fine.” “My child has meltdowns too.” “Well it’s not cancer or anything like that.” No it’s not, and it doesn’t even compare.
She struggles every minute of every day. Even when she “looks fine,” she is panicking inside. She masks her struggles (bottles them up, copies “normal behaviours”), then when she can’t do that any longer she either explodes or implodes. She sees, hears, and smells the world differently, and we have to adapt. We have to figure out what helps her cope.
Another difficult thing is seeing your child happy one minute and then disturbingly distressed the next. And how it impacts her three-year-old sister, who is too little to understand. Your every waking moment is consumed by autism. Triggers, solutions, prevention of meltdown. Her meltdowns can be terrifying and violent. They can last for hours. It is soul destroying.
Imagine being in a dark room and trying to find pieces of a jigsaw puzzle and putting them together. It’s an impossible task, and what works one day may not work the next.
What's one thing you wish people knew about your daughter?
Her kindness, love, sense of humour, and infectious laugh are amazing. She is wonderful, bright, articulate, and thoughtful. That is ALL genuine.
What are your favorite apps? What are Issy’s?
I have found Instagram a place of sanctuary and a great community of support, ideas, and information. I recently set up @this.girl.can.hop as a way to normalise autism, share what works for us, and to highlight autism in girls, which is often missed because they present very differently to a “typical” male autism profile. It has allowed me to be creative and connect with people who get it. At present the Wolf + Friends app isn’t available in the UK, but I have found the W+F Instagram and website invaluable. It’s a brilliant concept.
Issy likes YouTube; she can escape there and her brain can switch off and have a rest. She also likes the Piano app and drawing apps.
5. Where is your family's happy place?
Being outdoors. We are really lucky that we live 10 minutes from the Peak District. It’s a beautiful, calm place to walk, explore, climb, and clear the cobwebs. The children love it, and it’s a great place for the four of us to escape with no distractions. And if it goes wrong, we can easily get back home.
Failing that, the garden, especially in the summer when we can open the doors and the children can play. Issy can regulate on the swing and trampoline, and it gives the girls the chance to be sisters and friends and have carefree fun.
Who are your 3 favorite moms to follow on Instagram?
I like to call it “GINstagram” because I like to follow people who I could go for a gin with and we would just get on like a house on fire. I also like people who are real and make me laugh.
@mother_pukka - Anna is hilarious and honest. She will bare all, sometimes literally. She also campaigns for flexible working, and this is SO important for parents, careers - actually anyone - to get the best out of workers for a healthy work life balance.
@doesmybumlook40 - Kat is so stylish. I love a good fashion find and want her wardrobe. She’s honest and a little bit crazy in a wonderful way. Kat never fails to make me smile. She is also a mum to autism, so she gets it!
@thefatfunnyone - Jess is bold, beautiful, raw, honest, humble, and funny.
What TV show, book, or podcast are you currently obsessed with?
TV shows: “Line of Duty” and “Suits”
Book: I’m currently listening to Busy Phillips’s audio book, “This Will Only Hurt a Little.” I love it; she’s brilliant.
Podcast: Table Manners. Jessie Ware and her mum are hilarious and very good at interviewing. You actually feel like you are at the dinner table with them
What 5 words best describe you?
Kind, loyal, thoughtful, tenacious, and fun.
What advice would you give a new special needs mom?
For most parents, getting a diagnosis is overwhelming. However difficult it can be to keep your head straight at the start (and it can be difficult to adjust), don’t forget that your child hasn’t changed. They are still who they are, and they are wonderful. You will find what they need to support them. You will figure it out.
Focus on the small moments that make you smile, their amazing qualities, and the things they can do, not the things they can’t. Shower them with love and reassurance.
Just take one day at a time, and cry it out if you need too. Don’t bottle it up. Find someone you can talk to -- a partner, family, friends, even the lady in the coffee shop. Find a support group or network; there are people out there who get it. This has made a huge difference for me and got me through the last year.
Ask for help, emotionally or practically. If you’re spinning too many plates, you will drop them. You need your mind to rest as much as your body.
You will be ok and so will your child.
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