Alex's ASD Journey
This story has a happy ending! Our court appeal regarding Alex's education rights has been successful. The court has ordered that all the future costs for Alex's ABA programme are to be covered by Barnet Local Authority. Alex's ABA therapy has been acknowledged as essential for his needs - Alex will now be receiving adequate support that he requires and deserves. We are endlessly grateful to all our friends and supporters for walking this difficult path of fight with us! We have won and Alex's future is looking bright!
The total amount of online and offline donations across two platforms (GoFundMe and JustGiving) has reached over £70,000
The total spend on Alex's ABA programme and tribunal expenses amounted to over £164,000 over 4 years
Dear Friends and Supporters,
My fundraising campaign is now powered by a UK registered charity!
We have raised over £46,000 on GoFundMe since April 2017 and I am now looking to cover the cost of Alex's first year at school, which will be circa £50,000.
My boy Alex was diagnosed with Autistic Spectrum Disorder at an early age of 2 years 4 months.
Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.
For Alex this condition was about:
- being unable to enjoy food as he could not chew and choked on solid foods. He could only eat blended purees.
- being unable to enjoy sleep as he got over stimulated and could not control his emotions and therefore could not settle for sleep for hours and kept waking up through the night. Hundreds of sleepless nights and broken sleep for everyone in the family.
- being unable to enjoy his mother's (my!) love and the love and attention of his closest people in the family as he was unable to engage with anyone around him, being trapped in his bubble of self-stimulatory repetitive behaviours (tirelessly and purposelessly running up and down the corridor; opening and closing a bedroom door, which could last for hours; flipping hands staring at his own reflection endlessly)
- being unable to enjoy the beautiful world around him as he was suffering from sensory overload and being unable to control own emotions during transitions (say, a simple change in a route to a nearby park would cause a meltdown with screaming, crying, leg kicking and flopping on the floor, and subsequently a lot of stress to Alex and everyone around)
- being unable to enjoy sharing his interests with other children, as he was completely non verbal, could not speak a single sound, did not have ability to imitate, interact with peers, engage in any fun activity, not even play ball etc.
For me Alex's condition was about:
- being unable to find access to any mainstream childcare and empower Alex's inclusion with other children. Alex was excluded from nursery at the age of 1.9y.
- being unable to communicate with my son since him being mostly unresponsive as a result of his deep self-stimulatory repetitive behaviours.
- being unable to facilitate Alex's development as no strategies or intuitive approaches I tried time and time again would facilitate his engagement and improvement. He would run away or physically fight any attempt to stop his purposeless motion and to sit him down for an activity.
- being unable to live a happy quiet life with my boy as Alex's uncontrollable behaviours and frustration would spark sudden spans of aggression where he would bite me, scratch my face, pull my hair, attack me unpredictably with full force hand hitting and leg kicking.
It was a life in misery and despair where our prospects looked gloomy to say the least. I was trying to mentally prepare myself that there would come a day when life with Alex would become unsafe for me as he would grow older and become stronger, being a physically impressively able and tall boy as he is.
Alex was discharged from the paediatric services from the community hospital at the age of 2y9m as the UK healthcare system has nothing effective to offer to pre-school children with autism.
As a dedicated mother I was not looking to give up and after extensive research a glowing beam of hope presented itself to me - the ABA early intervention therapy.
This is a science based therapy and is commonly and widely used in the US for children with autism from as young an age as 18 months; it is fully drug free and instead is based on many hours of carefully tailored play therapy delivered by highly trained and qualified tutors at home and it school.
Here the time is of essence and the younger the child, the more chances he/she will have to improve to a level that would allow them to live a good quality independent life.
The goal of ABA therapy is to increase behaviors that are helpful and decrease behaviors that are harmful or affect learning.
The programme is very costly as an hour of a consultant's time (they put the individual programme together and review progress monthly to adjust the targets) costs £150 and an hour of the tutor's time (they put the programme into practice) costs on average £25-£35. Neither NHS nor the local government are willing to spend their restricted budgets to provide this essential therapy for young children.
It takes at least 20 to 30 hours a week to carefully and playfully work on a variety of essential skills to improve Autistic Spectrum Condition.
Inspired by my findings, I got determined to provide my child an opportunity to develop and start enjoying the simplest things in life. I have thrown all my earnings and savings into the programme and have started crowdfunding, so the programme commenced for Alex in March 2017.
What has the early intervention programme given Alex so far?
- After 8 months of intensive TalkTools programme Alex has finally learned to chew. He gets inspired by yummy food and is not afraid of tasting something new all the time. His all time favourites are cheddar cheese, cherry tomatoes and bananas.
- After over a year of well devised toilet training Alex is almost fully self-servicing when it comes to his basic toilet needs, whereas at the age of 3.5 he was still completely unaware of the concept and was fully reliant on adults and had to be in nappies all the time.
- After 2.5 years of incredibly hard work Alex has not only started imitating sounds and pronouncing syllables, he currently uses over [upd:] 50 words for communication and over 100 words for practicing oral motor skills and is attempting to sing songs! When Alex was 3 years old, he could not repeat a single letter after me, was mostly silent and only produced some high pitch alien sounds at random times.
Alex is truly thriving with the input from the early intervention therapy. He is taking interest in playing simple games, gets inspired by new songs and rhymes, and most importantly for me - Alex has grasped the concept of physical pain and aggression, he no longer attacks me, but instead, my boy looks at me with a bright smile, approaches me and other lucky people in our family for an honest hug, enjoys being tickled and cuddled and is able to enjoy those other little simple things in life! He let's me kiss him on the cheek and reciprocates in his own sweetest manner!
The programme is still very much work in progress and around 2 more years of multi hour therapy sessions will be required to support Alex to an extent where he will hopefully be able to reach his full potential and:
- be able to communicate freely through the functional use of speech
- be able to interact with lesser known adults and, most importantly, other kids through functional communication and shared interests
- be able to access national curriculum through intensive support in a mainstream school
The monthly ABA programme costs £4,500:
£450 monthly consultant's workshops (3h)
£4,040 per month blended average for 32.5 hours of 1-2-1 tutor support at £22-£35 hourly rate
In over 2.5 years of therapy I have spent over £115,000 on Alex's ABA early intervention programme.
This would not be possible without the unprecedented help and support from so many kind-hearted people who care about Alex's journey and believe in him finding his voice and becoming a meaningful part of our society.
And there is no way I can stop now - halfway through our tough but so inspiring journey!
I look to our supporters and guardian angels for continuing to play a huge part in Alex's improvement. I am currently looking for support in funding Alex's first year at school with ABA support, this will cost around £50,000 for 2019-2020 academic year.
Together, I am sure, we will be able to give Alex his biggest present in life - allow him to be himself in a functional and creative way, not in a reliant and destructive way.
For my child - I will give anything but up.
Our old fundraiser can be found at this address: