Molly, Autism and Me

My beautiful Daughter Molly has always been a bit quirky. Ever since she was a baby in Shanghai where my lovely AYI helper Sophie would take her out and about in the neighborhood to socialize with the locals.  Many would greet her with “Ni Hao Molly”. Now 11, she’s always charmed people wherever she goes with her rich language, factual talk and telling it just how it is!  There was hardly any baby talk it was literally words, then whole sentences. She was a late walker and never crawled much. I was a ‘first time mum’ but I knew she was different to her peers.  To give all credit to a friend there,  Angie, who did suggest I take Molly to see someone for her lack of movement but my response was that as she was so articulate that the rest would surely follow later.  What did I know?  I was in a strange country with no family around me.

On a day to day basis her head is busy with 100’s of imaginary friends that come and go, they have accents, birthdays and she holds detailed dialogue conversations with them. It’s really become our ‘normal’. She longs to be a part of the little friendships in school, her school friends are mostly kind but she doesn’t get the give and take part of being a friend. Once she engages and finds out someone’s name, and if they want to play, quite often she will just start talking about her imaginary friends to them and only want to play her own games.  Molly also develops a lot of facial ticks when she is stressed out, like scrunching up her face and when she’s excited she jumps up and down and flaps her arms like wings.  She gets frustrated extremely quickly and is very self-directed.  She tends to take things incredibly literally which is so hard for me; the comedian I am who is constantly sarcastic, sardonic but Molly can’t tell that I am teasing.  She recently performed and wrote, introduced and performed a song with classmates and played drums with Rock Steady at school. She was an absolute star! Her sense of performance and drama is if anything, enhanced!

When she was 3, we noticed her struggling with movement and getting up and downstairs – she was so cautious and a little rigid.  Initially, we had her eyes tested and she got glasses which we thought would help. When she started pre-school at her nursery in Singapore, the staff suggested I have her assessed because her responses weren’t the same as her peers. We did this with an Occupational Therapist and were told Molly had Sensory Processing Disorder.  This is where the neural pathways in the brain don’t quite connect immediately and there is a slight delay, the result of which is that Molly doesn’t get the same information of compression and release in her joints that help neuro-typicals walk downstairs. Imagine if your entire life was like walking on a rope bridge?  It means that her brain is just wired differently and it also affects physical stuff too – but what I’ve learned very recently is that this isn’t an illness, there is nothing broken about Molly – just different.  Even after 15 ice-skating lessons she still wouldn’t let go of teacher. Going downstairs can still be a struggle and so can riding a bike and scooter for long periods of time.  As she was pregnancy number 5 of my 8 and I took progesterone supplements in the first trimester to help secure the pregnancy; I sometimes wonder if this has anything to do with it, along with the fact she really wasn’t able to suck properly and didn’t thrive in the first three months.. as a parent you will always question why but maybe it’s just because..

Since moving back to England in December 2016, I’ve been trying to get Molly the help she needs in school. It took over 2.5 years but we got the Educational Health and Care Plan (EHCP) in December 2017 and she is also going to go a great secondary school with the appropriate support she will need this coming September.  This is such an incredible relief and I am so thankful that a facility like this exists in my area.  I also went down the route of diagnosis as I believe that it will help her understand herself and why she is the way she is. So Molly now has her diagnosis: Autistic Spectrum Disorder (ICD-10). I knew this was coming but I cannot say the words ‘Molly is Autistic’ without bursting into tears!  Just a word and actually it is an umbrella term that encompasses a multitude of different conditions…So why after all this am I finding it so hard and emotional? It’s not my journey or is it as her mum?

Dancing is my passion and my escape and I am incredibly fortunate that I am supported to do this on a regular basis.  I meet and talk to many people at dancing and in one way or another they dance for the similar reasons .. escape, whether it be from loneliness, their home situation, a time to socialize with like-minded people and it brings most of us incredible joy and happiness.  Recently a concerned family member pulled me out on my dancing and how I’d have lots of time to do this when the kids were older.  Most of the time the kids are going to bed when I go out and admittedly I am dancing 1-2 times a week on average. Dancing for me has been my saving grace and my lifeline, so I try not to judge others until I’ve walked in they’re shoes.

Parenting does not come with a guidebook, most of us are doing the best we can in our own unique way and being a parent of a child with additional needs is indeed different.  The hardest times are when you see them being excluded by other kids and parents.  It’s also difficult to explain to Molly’s little brother George why she is being treated differently to him.  With the Autistic diagnosis what can’t, she do? we asked Molly –  absolutely nothing said Molly and it was not going to stop her trying anything in life.  She is still the magical, funny, quirky, beautiful, tenacious, intelligent and loving soul she always was.  All I can do as her mum is help open doors for her, make her feel secure and love her as much as I always have but at the same time embrace her differences openly, so I can be the platform for her to shine!