Grace's story so far...

Grace's story so far...

Hello all!

Thank you for visiting our website and taking the time to look at our blog. This first blog will be mainly focusing on noticing Grace’s differences, her diagnosis and the impact it had on us as a family.

Grace was born at 40+2 weeks via forceps – she was a very healthy baby, and I had an amazing pregnancy with her. Grace hit all her milestones on target – rolling, sitting, weaning. At around 6 months of age, around weaning, I noticed that Grace would hum when she ate anything. We were VERY lucky that Grace was such a good eater, something that wouldn’t last.

Gradually, over time, I was noticing other things, such as being startled if someone coughed, constant flapping of her hands and humming, and walking on her tip toes every now and then. I tried to put it all to the back of my mind, and just thought ‘that’s Grace, she’ll grow out of it’ and I didn’t want to be the person to say it. I knew from a very young age that Grace was different - I probably buried my head in the sand quite a bit. No one wants to believe there is something wrong with their child.

My mum finally spoke to me and said that she had noticed the same things as me, I couldn’t ignore it anymore. My mum looked after Grace while we both worked, and some days spent more time with her than we did. I spoke to Nick about it, and he was adamant there was nothing wrong, and shut down any conversation I tried to have to approach it – he found the whole thing quite hard to deal with. Looking back, it probably caused us a lot of friction, I had to approach the conversations carefully, but over time, we spoke more about it, and Nick saw the same things I did – we were facing this unknown territory together.

I reached out to my Health Visitor when Grace was around 2 years of age – mid lockdown 2020! My Health Visitor wasn’t seeing anyone, neither was the GP, there were no professionals to hear my worries or concerns. I should also mention at this point that Grace had started talking, and then completely regressed, it was like a switch had flipped overnight – something which was so painful and confusing to go through – where had our little girl gone?

In October 2020, we were very lucky to move to Buckinghamshire, we knew it’d be hard to Grace to get the best support in London, and we wanted to give her a better life - that’s where Grace’s Autism journey really begins! Grace started preschool, I knew it would be picked up, but it didn’t occur to me how quickly. At the end of the first day the Preschool Manager asked to see us, she explained her concerns and asked if she had our permission to make a referral to the LA (Learning Authority) for an assessment from a Paediatrician. Her Preschool were, and still are truly amazing and so supportive. I’ll be devastated when she has to leave.

During this time, I was doing my own research and thought Grace had Sensory Processing Disorder – I only had my little knowledge and Google to go off at this point. I had also taken Grace to the doctors, as she just wasn’t reacting when we spoke to her etc, so wanted to rule out anything wrong with her ears (I was wishful thinking that if she had blocked ears, that all the issues would be solved). She was amazing during her hearing test; I was so incredibly proud. Her ears were fine.

I’m not a patient person, so the wait to see the Paediatrician was hell. Grace was finally assessed in May 2021. It was around an hour long, with me, Nick and an Occupational Therapist. We answered lots of questions, played games and took Grace’s lead. Some children sometimes have to be assessed on a number of occasions or parents have to wait to receive a letter of diagnosis. We were told on the spot – Grace had ASD (Autistic Spectrum Disorder), Severe GDD (Global Developmental Delay) with elements of Pica (the eating or craving of things that are not food) and ADHD (Attention deficit hyperactivity disorder). It was the strangest feeling I’d ever experienced – relief, fear, worry and generally overwhelmed.

When we got the diagnosis, it felt like a grieving process – I can only speak for myself on this, but at first, I’d fully accepted it, but the more I thought about it, and researched, I then came crashing down. I was angry, hurt that my baby had to be different, and we weren’t sure what her future would hold. It sent me in to full panic mode, and there were many occasions where I would just sit and cry with Nick – I’d worry if she’d ever have friends, boyfriends/girlfriends, marriage and a family of her own, her independence – and selfishly, would I get my independence back? I LOVE being a mummy and Grace will always be my number 1 priority, but I don’t want to lose who I am too.

We are a year into diagnosis now, and STILL waiting for an EHCP (Educational Health Care Plan) – I know it’s a long process, but like I said, I’m not a patient person. This also means that we had to apply for a school place in a mainstream setting, something we are fully aware Grace will be unable to tolerate. Grace recently got accepted to our local primary school, we just have to live in hope that her EHCP gets approved ASAP, and she is eligible for a Special Needs School Placement.

Overall, we have been incredibly lucky – we have super supportive parents, one Nanny actually teaches children with SEN, so we love to pick her brains a lot and she is fantastic with Grace and her needs – she even has her own chillout room! The bond Grace has with my mum is amazing, she’s been there from birth like a second mother. As I mentioned, Grace’s preschool have gone above and beyond for her, and us, making sure we understand exactly what is going on, keeping us up to date on how Grace is getting on, and calling me when Grace was having meltdowns that she wasn’t coming out of. We know, we are lucky, we hear the stories how children are failed in the system, and that makes us really sad to think that families are struggling to much to get the help they need.

I think I have waffled on in this blog! I have probably missed bits out, but I plan to do blogs on topics I can relate to with Grace, such as Eating & Sleeping – so keep your eyes peeled!

Amy x

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