We started the week with a heart-felt letter from a mum about her disabled child. Just as I was thinking I wouldn't bother with a post for today, I checked SNJ's Facebook Messages and found an amazing message from a mum about her son with special needs, as he approaches his 16th birthday.
Mum, Angela Kingston has written an open letter to her boy and asked us to publish it on SNJ. As soon as I saw it, I knew it would be the perfect way to end the week.
Invisible shoes 
Dear Son,
What does a mother get her son for his 16th? I'm sure that's a question many mums ask themselves. I want to give you something special something that many young men wouldn't have. I want to hand you my invisible shoes and here is the reason why:
It's fast approaching your 16th birthday, a birthday that I have dreamt of for so long. It comes with great joy as you are approaching another milestone in your life; one that's been filled with happiness, joy, laughter and hope. But it's also one that's come with great pain, sadness, frustration and many challenges.
I want to say thank you son, for all the times you had your meltdowns and brought a school of 1450 to its knees. That gave me an opportunity to come into the school environment for days on end with my packed lunch to give me a greater insight to what was needed for you to succeed and eliminate those meltdowns.
Thank you for all the sleepless nights, because it was then I had the strength to research all the information I needed to enable me to learn why you weren't sleeping and how a structured routine would help. Thank you for all your frustration because that taught me to fight for training of professionals working alongside you and for you to have the appropriate resources and provision.
Thank you for your difficult days because that taught me to have the patience of a saint. Thank you for the floods in the bathroom because your obsession with water enabled me to be the best plumber at 2am. Thank you for all the times you ran around the school because that helped me identify your areas of strength as a gifted runner. Thank you for your timing of using inappropriate language right in front of the positive parenting brigade at the school gates that gave me a great insight into how other parents with a child with a hidden disability felt at times like this.
Thank you for your inability to go to sleep until we had white noise and you allowing me to touch your finger like I was ET to comfort you, I knew then it was your way of showing me love. Thank you for all the times I was called into school for you having to be restrained. It helped me challenge systems for disabled young people's human rights.
Thank you for all the times I was told you were not allowed to be part of activities in and out of school. It made me look into equality laws and case laws to ensure you were included. Thank you for the time you were excluded from our so-called inclusive system and how it made me take the path to become an independent appeal panelist for exclusion, which in turn helped overturn your exclusion due to school not following procedures.
Thank you for the times I have been sat in many professional meetings with acronyms that I never understood. It gave me an insight into what other families go through and made me access courses to understand the system better. Thank you for showing me what a day in yours shoes is like to see the barriers that so many disabled people face. Thank you for having processing overload because that gave me a greater understanding of what it's like to be in an environment full of noise and then be expected to process, retain, and retrieve information. That gave me a passion to look at the medical side of why this happens.
Thank you for having the last name Bowers, so no professional put us together. This allowed me to hear what was said by professionals who didn't know I was your mum and gave me a great ability to challenge and to know just how my knowledge was feared. Thank you for identifying through your own personal experiences the failings of a mainstream schooling for a child with special needs/disability. It helped me become involved with government consultations to have better practices in place to help families like ours.
Last but most certainly not least, thank you for making my heart sink when I used to see the school number flash up on my phone. It made me always keep a pair of shoes at the front door ready to do the quickest sprint to the school gates. I don't have to do that anymore, but it doesn't matter what age you are I will always be wearing my " invisible shoes". It brings me back to reality to where you were and to where you are today. Standing proud, a beautiful, gifted, funny, bright, special young man who has filled my heart full with love and my head full of knowledge.
I hand you my invisible shoes as a gift so we can understand what it's like to walk in each other's shoes. For my amazing soon-to-be 16 year old, from a mum who's been blessed to have you and to call you my son.
Have a great weekend!
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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Such a beautiful letter. Highlights the trials we are manoeuvred through but reminds us why we must! ❤️
Thank you for your kind words about my open letter to my son it’s greatly received I’m glad you like it x
Thank you for your kind words about my open letter to my son
Many thanks happy birthday to your son xx