AWESOME ADA & AUTISM

When I think of Autism, I automatically associate it with boys. After a little bit of research it seems that there are indeed more males diagnosed than females. It’s thought this could be because girls tend to get misdiagnosed with other illnesses,  including anorexia and OCD. Or,  that girls are more adept at at hiding their symptoms.

What ever the reason, it makes this candid, open and good humoured list from Clare about her awesome daughter Ada’s Autism all the more remarkable.

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• ️I knew pretty early on that something was different with Ada Bear. She wasn’t like the other babies at play groups and everyone used to laugh and say how lazy or chilled out she was

• ️When Ada was a good few months old I noticed she wasn’t lifting her head as much as the other kids

• ️ Next came rolling! No rolling. Then no sitting. Then no pulling up. By the time her 1 year review came up I was a little at a loss. I didn’t know if I just had this mega chill antisocial baby or if something was up.

• ️The health visitor was deffo worried so referred us to a neurologist and an OT. It turned out that Ada was super super hyper mobile (double joined basically) and would need physio and support with walking/standing so special little splints that she still wears to this day in her boots

• ️The wonderful NHS gave us a baby Zimmer frame! It was so so cute and helped Ada Bear learn how to walk but peoples faces in the park gah – there is this sad smile face that people do when they see a little kid with a zimmer frame. I’d always really loudly, whenever I got one of those looks, exclaim to Ada ONLY A COUPLE MORE MONTHS THEN THE ZIMMER HAS GONE BABES YOU ARE DOING SO WELL

• Whilst all this walking biz was going on we also were noticing that Ada was kind of behind like mentally. She had zero interest in other kids and she wasn’t talking, her eye contact wasn’t really there and her sleep was dreadful, however, all these things seemed like similar problems that other 2 year olds might have so I didn’t worry too much. She continued seeing the OT and having these developmental tests which she was mega behind on but it kept getting blamed on her being behind with the walking etc. I really knew something wasn’t right.

• Ada started walking independently a couple of months after she turned 2.

• We had a bunch of tests done at GOSH she had heart scans to make sure her heart wasn’t also hypermobile! An MRI which was really fucking stressful, lots of blood taken and tons of X-rays. They couldn’t find anything wrong with Ada genetically and it was around then I started thinking about Autism.

• 3 is really young to get a kid diagnosed but I was forceful that we went through the diagnostic process as if Ada was actually autistic I wanted to understand as much as possible in order to help her flourish.

• The day they gave us the diagnosis was really shitty. In my heart I knew it was going to be positive but it didn’t stop me bursting into tears in a room of like 10 professionals. I’d  found out I was pregnant the week before and I was just so scared I remember blurting out WILL THIS ONE HAVE IT TOO.

• A few days later I fully calmed down and started furnishing myself with research and books and TED talks and started feeling so much better.

• Ada is a magical child and I was excited about seeing the world through her eyes.

• ️I was also balancing starting my own company at this point.

• We quickly got given a new occupational therapist, psychologist, speech and language therapist and tons of support at Ada’s nursery including a specialist one to one support

• ️I started telling a few people that Ada was autistic but got quite alarmed by the amount of people that said they were ‘so so sorry’ it was frustrating.

• Autism isn’t a death sentence and my kid is fucking brilliant in many many ways. So what if she ends up living with us forever and her fave toy is a pile of wool and she would rather hang out with trees than people – it’s nothing to be sorry about omg.

• I know they were just lost for words but still OMG.

• We quickly had the answers (autism) to so many of Ada’s ‘weird’ behaviours. Sometimes she wakes up at like 2am laughing her head off as she’s just remembered a funny joke from days before.

• She is super sensory and she smells everything before she eats it which massively paid off in Aesop the other day as the woman working there saw her sniffing everything and gave her a free bottle of moisturiser lol.

• We are part of a research project now at Great Ormond Street called the 100,000 Genomes project as Ada’s geneticist believes that Ada has an ULTRA RARE DISEASE (it sounds so extreme that I have to block caps it each time) that links her extreme hyper mobility and her autism. Will find out in 2 years or so if she has said ULTRA RARE DISEASE and what that entails.

• The amount of random people that ask me if I think she’s autistic because she was immunised is astounding. Like what a question. For the record NO it was really obvious that she was super different pretty much from birth, also imagine asking a mother if she thinks she gave her child a lifelong disability!!!!! As if!!!!

• A woman in the park the other day came right up to me and told me that my daughter was too old to be in nappies. I point blank told her that my child has special needs and that she to be careful when passing judgment. I’ve literally never seen someone be so embarrassed in their entire lives. She apologised profusely and swore to never pass nappy judgment ever again.

•  I can laugh now but after people say this stupid shit to me I get really down and want to stay in bed for days. But I can’t do things like that anymore I have to push forward.

•  Just before my son was born I started panicking that he wouldn’t be autistic. wtf was that about?!

• He isn’t btw it’s absolute madness having a neuro-typical child that started rolling at 3 months and crawling at 6 months.

• Ada starts school in a few weeks she’s been given a place at a special school.

• The process of getting an ECHP (educational health care plan) formally known as a SEN (statement of educational needs) is lengthy and fairly brutal. Everything is acronym city and the admin side is absolutely crazy. You should see my Ada file!!!!!!! The paperwork is demented.

• ️I felt really strongly about Ada going to mainstream school. There is a lovely one locally and I felt it would be perfect for Ada but one of the women (Mary) who was assessing Ada felt differently and suggested we pushed to have Ada placed at a Special school

• Mary felt so passionate about it that she actually openly wept at my stubbornness to even see the special school. I’m embarrassed now that I didn’t see it as an option as when I eventually went to see it I realised that Mary was right. Completely right.

• There were 18 places at the school and we were given a space immediately. I have visited the school a few times and I find it really difficult as the children all have varying levels of disabilities and I find it hard to mentally place Ada there even though deep down I know it’s where she needs to be

• My friends that have children are mostly at the point where they now have 2 and it’s been interesting watching how everyone interacts.

• Mostly it seems like Ada ignores her brother Ivo. But then all of a sudden she will say that she wants to see him and pat him like he is a puppy. The other day I saw her trying to show him how to hold something and my heart just melted. It’s fleeting little glimpses of what their relationship will hopefully be like one day.

• Ada makes the most abstract jokes and has recently started talking and the things she says are adorable. He latest phrase is that she wants to ‘go home and get cosy’ which must have been so frustrating for her to convey for years whilst I’ve been taking her out constantly!!

• There is this saying that if you’ve met one person with autism then you’ve met one person with autism and it’s totally true – everyone on the spectrum is so so different. For example Ada will cover her ears when a siren comes past which is seen by many as typical autistic behaviour (or typical child/person behaviour imo) but adores going to really loud theme parks and eating really full on food flavour wise aka olives and cheeses and pickled anything!!

• Other children are incredible – her little friends instinctively seem to know that Ada is different and give her space yet love having her around. Her best friend at nursery was a gorgeous little super boisterous boy who acted as her protector it was the most adorable thing.

•  I’ve called this list Ada’s Awesome Autism because even though this whole journey has had it’s tough moments it’s actually been pretty great getting to know my fantastic child’s brain and I really wouldn’t change a thing. I mean it would be GREAT if she could be out of nappies soon but we will get there! I kind of like the idea that I will be Ada’s carer likely forever. I just need to stay alive so I’ve been trying to look after myself better!

• If any parents ever want to chat about autism feel free to hit me up I’m on Instagram/clarejamesclare