Thanks for taking the time to visit my JustGiving page. As many/most of the people who know me know Keira my 10 year old daughter has Autism. She was diagnosed with Autism late 2018 after a 6 year battle. From the age of 2 I realised there was something different with how Keira did things. After all she was my 3rd daughter, it wasn't like I had no age related experience. Read below if you would like to hear about our story. ( it is extremely long and if you would find it easier feel free to reach out to me on my socials or stopping by a stream. This month isn't just about raising money its also about raising awareness and I would love to connect with others that can relate knowing someone with autism or maybe you are an adult with autism. My socials are all on this link please do reach out. Autism is a big part of my life and is not just an April thing , I just wanted to make this months charity for autism because of it being Autism Awareness month.) http://www.solo.to/katandgirls

Of course I'm not a professional but I reached out to professionals and I was made to feel like I had munchaussens! At 1 point the health visitor even said that I "wanted" there to be something wrong with her... (how anyone could even suggest that is beyond me! So frustrating you wouldn't believe) when Keira started infant school the behaviour got increasingly worse. Doctors refused to support a CAMHS (Child and Adult Mental Health Service) application, saying the school had to do it. The school refusing because she behaved "normally" in school....

The school refused to believe me about how bad it was at home, even saying I was using her as a scapegoat, blaming me for having 4 children, that it was lack of attention, even blaming me for a "broken home" (a past Domestic Violence relationship breakdown), As the behaviour got worse and worse at home it escalated to intensive support from Children's Services (daily visits for several weeks). Specialists and professionals blaming me or the homelife as the cause. Social workers even called it "middle child syndrome". I had to attend parenting course after parenting course, none of which offered ways that worked or helped, despite it working for the other girls. Even professionals with years and years of experience were unable to find ways to handle her behaviour! If professionals couldn't help or find ways that worked what hope did I have! And yet they still refused to believe there was anything "unusual"

Keira started Junior school in September 2018 and the SENCO (Special Education Needs Coordinator) agreed to do a CAMHS referral within the first 2 months of starting school! (This was a huge breakthrough owing also to the fact one of her own children had autism and she said that often children mask their emotions in school and explode at home & that girls are alot harder to recognise and diagnosis!) I could have cried that someone after 6 years finally was taking me seriously! Just wanting answers and a way to help her! I waited many months for the assessment. Eventually we got the assessment and same day finally a diagnosis. Keira was on the ASD Spectrum. I then just had to wait for the written report which arrived 2 months later.

Whilst I was still in the assessors room as soon as he looked at me and started with the I'm sorry.... I began to cry because at that moment I realised the battle and exhaustion was over and breathed sighs of relief that it wasn't in my head, that it wasn't my fault, I had fought for so long for someone to take me seriously and getting the diagnosis I thought the battle was over. Little did I know that the battle had only just begun... this time it was just a different battle.

I signed up for the Barnados Cygnet parenting course on the same day I got the diagnosis. And within a few months the course began. Knowing I wasn't alone was a relief within itself, but I soon realised that this was far from over. It soon became apparent that many parents shared similar stories with each other, but our situation and things we were dealing with was very different. So I soon learnt this ASD Spectrum had a huge scale difference. The diagnosis didn't mean she could be helped through medication,  the new tactics I learnt on the cygnet course still didn't seem to help just like the other parenting courses didn't help. So I knew that the future was going to be incredibly tough.

But due to Covid-19 the course was cut short and I began to feel very alone, with no friends or family for emotional or physical support my daily life was still just as hard. Noone around me knew just how hard it was living with someone with autism let alone keiras particular "version". A diagnosis didn't change her behaviour, it just meant she had a reason for behaving like she does and the only limited support we did have (a social worker) became non existent as the social distancing rules and lockdowns came into play. Covid itself making life even harder as we didn't get the breaks when she was at school to recharge our batteries. So in a global pandemic that everyone had their own struggles with, I didn't just have 4 children at home which would be a struggle for anyone but having Autism at home 24/7 with zero breaks or support has nearly destroyed my family. Keira doesn't sleep she can stay awake till 3-5am and when you have other children which wake up from 6-7am you are surviving on 10-15 hours a week. So I relied on school days to catch up with rest and catching some much needed sleep. So the last year has been even harder than normal.

Fast forward to 2021 and life is still terribly hard and extremely isolating. And when I heard about April being Autism Awareness month I knew I had to do something. I truthfully believe if Keira was diagnosed when she was younger alot of her behaviours wouldn't be as bad as they are, for example her addiction to food and never feeling full means our kitchen is locked up with padlocks, her refusal of the word no! and dealing with daily chants wanting food despite just finishing dinner can go on for many hours until the early hours of the morning. The chanting gets louder and longer including banging kicking etc to my poor neighbours frustration. 

I truthfully believe life could have been very different, which does make me angry, wasting time on parenting courses that didn't help, whereas if someone had of taken me seriously sooner maybe she wouldn't do the chanting maybe her school peers would understand her more and be a lot more forgiving in her ways making school life easier, I watch her struggle with creating and maintaining friendships at school, children not understanding it. She gets picked on and bullied through ignorance because people don't understand what Autism is and how different individuals with it can be. 

As if living with someone with autism isn't tough enough but when she is surrounded by naivety/ignorance and facing difficulties herself it makes life a lot harder. Every time she believes she has made a friend and something happens it is the whole family that suffers through her meltdowns. 

I hope that in the future children are taught about autism in school, that will help autistic children to have an easier school life. If parents and adults had more understanding then autistic people wouldn't be treated so differently. They would understand how she sees things differently and doesn't understand or reacts differently. Keiras behaviour reflects how her day has been, even with strict routines etc all it takes is for fellow pupils not wanting to play with her, or saying something that upsets her. She keeps everything inside all day till she gets home and explodes. 

Her meltdowns mostly mean she throws things and physically punches and kicks so things get broken and I get the brunt of it. Once she even smashed my car windscreen. But as hard as it is to be on the receiving end I mostly get hurt because I'm trying to stop her from hurting herself like when she repeatedly bangs her head against walls etc. It's incredibly frustrating that all these things happen mostly because of something happening in school. Which is why if there was more awareness and understanding in school maybe as a family we wouldn't have to deal with 95% of her meltdowns.

I cant imagine what it is going to be like when she is an adult, if she will be able to live on her own or in supportive accommodation. And watching her struggle with just school and fellow pupils I am already worried about her being an adult and the many more people she will be around and adult stresses and worries.

If more people understood about autism and if more people realised just how hard it is for them and their families, maybe there would be more support to help them get through each day. I want her to be surrounded by people that understand she isn't being mean when she is straight up and honest. 

Keira is a kind, loving, caring young girl, that loves to help people and loves penguins. She just wants to make friends (and keep them) I hope that as she gets older she finds people that understand autism and wants to be her friend.

I chose National Autistic Society because I don't want autism to be cured, its not a disease and its not contagious, I want professionals to recognise signs earlier, and help families more. Support families that are struggling, teach professionals to recognise signs earlier, teach young pupils about Autism and how people with autism think and how they interpret things etc.

If you managed to get through that essay thank you for making the time to read this. There's still so much I could have written, but if you know someone with autism, maybe your an autism parent, or even an adult with autism I would love to connect with more people effected by autism. Please do check out my socials and reach out or even stop by a stream. In the future. And just remember if you can't donate sharing really does help. And it's not just about raising money its about raising awareness too.

Thank You

Kat xXx

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