Abbi Targett

My little Ali 💕

“Fighting so hard, just to be heard, always trying to find her first word. This is your story, I tell it with pride. My darling girl, I’m right by your side.”

I have decided to take on the challenge of running 40km in October to support the charity known as Run For Autism UK. I am hoping I can surprise myself and get the full 40km done in one sitting (this will not be easy for me to say the least and will be a massive shock if I actually achieve it with only roughly 8 weeks to train for it😅) or splitting the run into two lots of 20km. Below is the link if anyone would like to give a donation to support families out there just like mine that are also facing this rollercoaster and I’m sure your help will go a long way. Your donation, however big or small, will be hugely appreciated by myself. 

https://fundraise.autisminitiatives.org/fundraisers/abbitargett 

I have decided to support this charity as I’m sure a lot of you know by now that my beautiful little four year old girl, Aliyah Esme, has recently been diagnosed with ASD after what has been the longest rollercoaster ride that we have been on so far. 

For those of you that already know our journey, I appreciate every single bit of support you’ve shown but for those of you that don’t, please take the time to read our story - no amount of words will be able to give you a full insight or understanding of how hard this condition is to live with so I will keep it as brief as I can to help you get a basic understanding. 

ASD is a neurodevelopmental condition that affects how a person communicates, learns, interacts and experiences the world. Autism looks different to each individual who is diagnosed as it affects people to different degrees with some requiring a lot more help than others hence why it is known as a spectrum. Whilst I appreciate Aliyah is only four years of age and still has plenty of time to grow, autism has severely affected her where she struggles with the basics in life and requires a high level of support with almost everything. Aliyah is nonverbal in the sense that she isn’t about to put sentences together or relate singular words to real life objects however she absolutely loves to sing. She sings from the moment she wakes up (and don’t we all know it as a household when she belts out a cocomelon song at the top of her voice on the landing at 6am every day😅) until the second she closes her eyes at night. 

I started to notice little traits of autism that Aliyah had from as little as ten months old where she became fascinated with her hands - looking at her hands constantly as if she was figuring them out, rotating them from side to side for long periods of time and repeatedly raising them above her head and back down. This escalated to her wanting to hold two objects that were a similar shape, size or colour at all times. At the time, Aliyah was able to say words like “mama” and “dada” and was hitting other milestones like clapping hands when asked, crawling and walking around the average expected age. Being a first time parent during lockdown without the usual intervention/support from health visitors and not knowing pretty much anything about autism, it was so easy to overlook these little traits especially since she was doing so well in other parts of her development until a few months later and suddenly, she regressed. She became very quiet and stopped engaging with eye contact. She showed very little interest in playing with toys or even socialising with anyone around her. She hated people being in her space and would often walk away when others tried to play close to her (she is still like this pretty much all of the time and will only tolerate a handful of her closest people playing with her). She was not very affectionate and it was upsetting to see that my child did not enjoy being cuddled much. I raised my concerns with the professionals from very early on and was told that we needed to allow her time to progress in her development due to her age. As she got a little older, the traits got quite concerning for me when she showed more interest in things like walking alongside the skirting boards over and over to look at them from different angles and lining up random objects in a particular order rather than play with the enormous amount of toys that she had. She developed a huge love for washing pegs and would like to have them in her hands all the time (washing pegs is actually how her and Ifan became best friends the first time they met each other🥹). I pleaded with the health visitor to refer her into ISCAN and for my concerns to be taken seriously. We got so far with the process and then had to start over again due to moving to a different borough and they were unable to transfer the notes over to allow us to pick up where we left so this felt like a huge set back. I eventually managed to get the ball rolling with the health visitor once we’d settled into our new home and Aliyah was receiving some support from the early years team who was trying to focus on Aliyah’s interaction skills but to no surprise, they wasn’t able to get much progress from her. We even paid privately for Aliyah to be seen by a therapist who worked for the NHS to suggest different ways of communication styles and felt like nothing at all was working. Aliyah was quite literally in her own little bubble. 

Aliyah would run back and forth in lines constantly and would hum and make noises rather than say words. She would often flap her hands and started to develop little ticks like making noises with her throat and twitching her head repeatedly. These are all things that are referred to as stimming (self-stimulatory behaviour) which is essentially repetitive movements, sounds and actions that a person uses to regulate emotions or cope with sensory input. Aliyah still uses stimming every single day and it can sometimes be quite intense, especially if she is having an off day where she is struggling to regulate her emotions. I mentioned earlier that Aliyah likes to sing - whilst she might not understand the meaning of the songs that she is singing, she knows the order that songs are going to play from her favourite programmes and will sings these on repeat. This is known as echolalia (repeating words or phrases that they have heard previously). Whilst her speech is not clear and a lot of people will not understand what it is that she’s saying, Aliyah spends so long singing/repeating these phrases  from the songs that she listens to and is making so much effort to pronounce them. You should see her face when someone understands what she is saying. Luckily, I have taught myself how to speak Aliyah’s language so her eyes light up whenever I repeat what she’s trying to say because she knows I understand her. 

Aliyah has always had a strong preference for her routine so any slight change would cause upset for her and it would be quite hard to regulate her heightened behaviour. It took some time to realise that the main thing that would help settle her was Lewis Capaldi on repeat (Ifan has made it to his top 5 fans on Spotify from listening to him so much) or the 4K underwater sea life with calming background music on YouTube which she watches every night before bed to help her little brain fully switch off from all the songs going around in her head. 

Aliyah went through a terrible phase of only sleeping between 22:00 - 02:00 on average every night and this lasted for months. This was the most exhausting (to say the least) time of our lives whilst trying to adapt to life with a very young baby at the time and adapting to returning to working shifts (including days, afternoons and nights) - I actually have no idea how we survived this part but we are now seeing another phase of this happening where she’s waking on average around 02:00 every morning and is awake for the rest of the day. It put huge amounts of strain on us as a family as our support network is VERY little and we did not know which way to turn next for help. Both Ifan and I work such demanding job roles where we are required to be switched on all the time otherwise it can cause us to make mistakes and put ourselves and others at risk in dangerous situations so the lack of sleep definitely made this hard. I decided to seek help from the GP as the health visitor would ignore my messages (I’m really not lying, I have proof) when I would quite literally cry out for help and this caused a referral to be sent to the paediatrician. I cannot thank this GP enough for seeing how hard it had been for us and for actually wanting to help. This expedited the process and I was contacted by a paediatrician shortly afterwards who offered an assessment at the earliest opportunity. Despite the paediatrician confirming from the moment she met Aliyah that it was clear as day Aliyah has ASD, I was required to complete a training course known as the “hanen more than words” course with a speech and language therapist before she could be formally diagnosed. As these were group sessions for other families, there was no flexibility meaning I was often required to stay awake following night shifts for four hours to attend two hour sessions as missing an appointment may have caused me to either restart the course or have Aliyah’s name struck off the list completely. 

Whilst Aliyah has been receiving support from speech and language therapy, she is still extremely delayed in her understanding of very basic language. She communicates by leading your hand to what it is that she needs because she is not able to actually tell you. It’s important for her to have items like her snack bag and juice bottle in sight so that she can take you to these items when she’s hungry or thirsty. Aliyah will be turning five in January and is still wearing nappies because she doesn’t have the ability to communicate when she needs to use the toilet so toilet training feels almost impossible right now. I am so desperate to get her help in this area for her own dignity! 

We are extremely lucky that Aliyah has such supportive staff at her school who genuinely care about what is best for her and who have her best interests at heart. Without these staff members guiding me, I’d probably still be quite close to the start of the process and would be none the wiser. The staff have ensured that there is an Individual Development Plan (IDP) in place which is a goal-orientated plan that sets out strategies on how Aliyah will achieve her goals set out within her plan. They have realised that Aliyah often struggles in a mainstream classroom setting and are in the process of applying for additionality for extra staff to be present in the classroom in order for her to be able to manage better in her education setting however I am told that they do not offer “one to one” funding anymore. If Aliyah continues to struggle within the mainstream setting, there is an opportunity for her to go into the special resource based hub where there is a much better staff ratio and smaller groups of 6 as opposed to 30 in a mainstream class. The decision of whether Aliyah will be eligible for this hub will be decided by a panel after all the evidence is provided to them on what strategies have been tried and what progress has been shown. Acceptance is not guaranteed so there’s a possibility that Aliyah will have to remain in the mainstream classroom which will not accommodate for what she needs. 

There is a huge shortage of specialists schools due to the increased demand on special educational needs support and insufficient funding which leads to overcrowded schools and reliance on mainstream schools where children like Aliyah can get lost in the system. The NHS website states that autistic people are disabled and disability is a protected characteristic in UK law which means they are legally protected from discrimination and are entitled to support that they need in education, at work or to access services. So why are they not getting the adjustments they so desperately need and are left to struggle even more than what they should be? Change needs to happen and it needs to happen fast. The number of people being diagnosed with some form of neurodiversity is on the rise so we need to push for these big changes in order for them to have any kind of chance to live in a world that is currently not accommodating for them. 

ASD affects Aliyah every single day and no two days are the same. Some days, she will be more than happy to go out for the whole day to have fun with her family while others she will really struggle and become upset the whole time she is out of her safe space, her home. Aliyah shows frustration by hurting herself including pinching her arms, biting her knees and headbutting anything in sight. When she is really upset, she repeatedly slaps herself to her face on both her cheeks but doesn’t seem to be affected by the pain. This is absolutely heartbreaking to see as a parent as it is clear she’s getting frustrated because she’s not able to vocalise what is wrong. The unpredictable reaction to being out often makes me feel very anxious because the last thing I want is to cause her unnecessary upset.  I see the people looking at her when she is having her episodes in public and the fact I feel I need to explain what is going on to justify her behaviour is so horrible. What people fail to see is a little girl standing in the quietest corner of a crowded room holding her hands over her ears to block out the noise because she is hypersensitive to sound or the anxiety of being in a noisy environment because it’s overwhelming for her and a lot for her to take on. Not many parents would have to worry about taking their child to events like birthday parties incase it’s too noisy for their child and it is so so easy for parents to take such small things for granted. 

Raising a child with autism bring a level of seclusion and exhaustion that most people will never understand. The feeling of being out in public with your autistic child is unexplainable. How is it possible for a person to feel so isolated from not being able to fully engage in conversations with other people because all their focus is on their child and what they’re doing, to feel sad from watching everyone else’s child play independently and together using their imaginations whilst mine is looking for the quietest corner of the room to cover her ears with her little hands because the loud noises hurt, whilst the other children are finding it hard to understand why she’s not answering them back when they’re asking her what her name is or if she wants to play. To feel guilty for not being able to let her run free and fully enjoy herself because she has no danger awareness. To feel SO anxious incase she doesn’t like the new environment and struggles to regulate her emotions because she can’t expressly say she’s not having a good time and wants to leave. 

ASD is becoming more common than we realise and I find so many people are uneducated on autism, just like I was before having Aliyah. In hindsight, this has been one of the hardest chapters I’ve experienced in life to date and it has taken such a long time to finally receive the piece of paper that entitles her to so much more. I have been battling for 3 and a half years to get where we are today and it is such a shame that not all families will get the speedy (if you want to call it that as I’m told being diagnosed at 4 is rare) turnaround time as this is the crucial age for their learning and development. Many families are facing substantial delays, sometimes waiting years, for access to necessary support services and diagnosis. These delays can have an even bigger impact on the people struggling as they’re not receiving the correct support that they should be. Our babies deserve to be prioritised and given equal opportunities to grow. No one ever expects to have a child with learning difficulties, it certainly did not cross my mind for a second when I was pregnant, and unless you live with it, you will never truly understand how difficult it is. It impacts every aspect possible in some way - your own wellbeing, your career, relationships with others etc. 

Dealing with vulnerable people is such a huge part of my day to day life due to my career and is something that I am extremely passionate about. This is definitely the most demanding and draining thing life has ever thrown my way but without a doubt by far the most rewarding and I feel honoured that I get to share this journey with my little Ali. I feel so empowered that I’ve educated myself as a first time mam who had no idea. I feel proud of how my autistic child is not only surviving but thriving in a world that’s not made for her. Watching Aliyah achieve the small wins every week fills my heart with the most indescribable fulfilment, like being able to count to ten using her fingers or saying the alphabet right through. She is honestly the most fascinating, beautiful, loving and inspiring little girl and I am extremely proud to call her mine 💕 I will keep pushing to get the support and intervention that Aliyah needs and will be her voice until she is able to find hers. She is such a little superstar and all I want is for her to shine as bright as she can with the right help guiding her 🌟 

Aliyah’s school ALNCO once told me “it’s not about trying to force Aliyah into our world but instead, it’s about encouraging her to let you into hers” and this has stuck with me ever since I heard it. 

I have no doubt that running 40km is going to be insanely tough but there is no tougher challenge than what we live with every single day so this is more about having the mental strength to get myself through the few hours it will take me and to prove to myself that I have the mental strength to keep pushing on, because that is exactly what Aliyah needs me to do as her advocate. 

Diolch yn fawr 🙏 

I'm running for..... my beautiful little girl, Aliyah.

Run for Autism is a fundraising challenge run by Autism Initiatives Group. Autism Initiatives Group is working towards a world where every autistic person has the support they need to thrive, every opportunity to fulfil their potential and a supportive, inclusive community to live in.

I'll be running 40Km in October to raise money for this fantastic charity!

Please sponsor me, any donation big or small is greatly appreciated 😊