Intro To L

Today I am sharing for the first time on social media about my 2nd daughter's Autism. I am starting this blog to share our experience and have a platform for parents in similar circumstances to my family. I am from Orange County, California and have been living in the London for 12 years, which added an additional challenge in knowing how to find the right support and services.

I will call her L for simplicity and won't refer to her name to keep her anonymous and protect her privacy. I haven't shared our story before as I always felt this was L's story to tell when she's ready, I have since realised I am part of her story and her main advocate since she cannot speak, but I am hopeful that one day she can share her story through her form of communication, whatever that might be. I will be her voice for now and the one who raises awareness for her, and children like her to make a change for the better. 

When L was diagnosed at the age of two, we had no support or guidance on how we could help her, and I felt helpless as her mom. I now know we lost valuable time that could have been spent helping L by not knowing what to do, or who to go to. Being L's mom has been an incredible journey with a lot of struggles, extreme lows and extreme highs. It has made me a stronger, and more empathetic human. I have learned patience, acceptance, awareness, and a kind of love I have never known. I have to add now that despite L's challenges in life, she is generally very happy and her frustrations mostly come from her difficulties in communication, which is improving and always evolving.  

As it's autism awareness month in April, I found it fitting to create this platform and I want to raise awareness for those children who are said to be different and have been outcasted for so long, since society doesn't know how to get their knowledge and potential out. L is one of the most intelligent, loving, determined and beautiful souls I have ever had the pleasure of knowing. She just sees, learns, and experiences life in a different way. Had we not changed things early on to suit her needs, we would have never known the depth of her capabilities. When I have told others about her diagnosis, I have been asked if she is good at doing maths, if she is antisocial, or like rain man, but the truth is Autism is different for L and all the children I have met and it really is a spectrum. L is non-speaking/verbal,  has severe Learning Disabilities and high sensory difficulties. She has a range of methods that we work on with her to communicate her needs, such as using an augmentative and alternative communication (AAC) device and sign language, and her receptive language is incredible. But this is only because we eventually found the right support for her. The one thing that I can say is common in all children with autism is that they all need the right support tailored to their specific needs, to reach their full potential. This is much harder than it sounds as so called professionals seem to approach children with autism with a blanket approach. Constant suggestions of a visual timetable or avoiding noisy environments may be good for other children but these are examples of things that are not applicable for L and in our view it is just a one size fits all approach for autistic children.

My family's battle to get support for L is not a one off, but a regular occurrence and things need to change. Autism is a huge spectrum, and though there is increased awareness, the support isn't always there and it tends to be more suitable for the children who are high functioning in society and not there for the ones who are more severe in their needs. There are certain therapies that are widely used in other countries and scientifically proven to make a significant impact in children that are not easily accessible in the UK. Meaning if you are not aware of it and wealthy enough to afford it, you will miss out on getting the best support for your child, that can truly impact their future. What I want is for our local authorities to realise that the support they are providing is insufficient and not good enough for our neurodiverse children who are severe in their needs. Instead of fighting families who have children with disabilities in tribunals, give them the right funding and support early on so that they have a chance at a meaningful life like any other child. In my blog I will be sharing all our experiences and will start from the beginning on the struggles of getting a diagnosis and then accessing early intervention services.

I don't want to be all negative as I know that awareness has increased, like the sunflower badge at airports for travelling, or allowing autism viewings at the cinema, but the support is not always there in schools and our local community. Finding any suitable after school or weekend activities has been challenging, which is a shame as L loves to do the things most children do, but needs time to adjust, extra 1:1 support and has her own way of learning. Inclusivity hasn't always been there either, and you get the weird looks from people when you are out and there are loud outbursts of frustration or tantrums, but once in a while you have kind, genuine people making an effort and going the extra mile to make awkward situations not so bad.

Something I struggled with was being able to relate because I couldn't see the same struggles that L has in others, and therefore feeling always lost as to what I needed to do next. So my goal with this blog is to share me & Ls experiences to help at least one lost mom or family. Stay tuned and I will share with you our experiences and the support we have received thus far in Ls journey. I'll begin with L's Story and Diagnosis.