Alex on a journey to find his Self on the spectrum
Donation protected
Updated 02/05/2021
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
Updated 29/04/2020
My boy Alex was diagnosed with Autism 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 overstimulated and could not control his emotions and therefore could not settle for sleep for several hours and kept waking up many times through the night. Hundreds of sleepless nights and broken sleep for everyone in the family.
- being unable to enjoy his mother's 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; flapping 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 for Alex and everyone around)
- being unable to enjoy sharing his joys with anyone around, as he 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 educational setting and empower Alex's inclusion with other children. Alex was excluded from his nursery at the age of 1y9m as the staff could not meet his needs.
- being unable to communicate with my son due to his total detachment which is the result of his deep self-stimulatory repetitive behaviours.
- being unable to facilitate Alex's development as no classic 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 get him to participate in 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 punching 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 an impressively physically able and tall boy as he is.
Alex was discharged from the NHS paediatric services from our community hospital at the age of 2y9m as the UK healthcare system has no effective therapy to offer to 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 scientifically proven therapy is widely used in the US for children with autism from as young an age as 18 months; it does not involve use of any drug/suppressant/etc and instead is based on the 40-hours-a-week carefully tailored play therapy delivered by highly trained and qualified professional tutors at home in an environment most comfortable to a young child. The goal of ABA therapy is to increase behaviours that are helpful and decrease behaviours that are harmful or affect learning/functioning. ABA is a lifestyle, a set of concepts that have changed our lives to the brighter better.
The professionally delivered ABA programme is very costly:
- an hour of a consultant's time (they devise the individual programme and review progress monthly to adjust the targets and provide training) costs £150 and we need a 3-5 hour input monthly
- an hour of the tutor's time (they put the programme into practice on a daily basis) costs circa £35 and a minimum of 35 hours a week is recommended to achieve visible results.
Inspired by my findings, I got determined to provide my child with 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 which aims at restoring correct jaw functioning, Alex finally learned to chew (by the age of 4!). He has now become a real gourmet!
- After 2.5 years of incredibly hard work Alex has not only started imitating sounds and pronouncing syllables, he currently uses over 50 words and 2-word phrases for functional communication and around 100 words to describe things that he sees around him. 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.
- After an 18-month-long fight with the local authorities, Alex has finally got the right to attend a mainstream school with a 1-2-1 individual support. He knows ALL phonics, is starting to learn to read simple words and is able to count objects.
Alex is truly thriving with the input from the ABA early intervention therapy. He is taking interest in playing simple games, gets inspired by new books, 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!
The programme is still very much work in progress and around 2 more years of full hours therapy sessions will be required to be delivered at school and at home 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 peers through functional communication and shared interests
- be able to access the national curriculum with intensive support at a mainstream school
Every month I pay just over £3,500 for the programme which sums up to around £40,000 per year.
In over 2.5 years of therapy I have spent over £100,000 on Alex's ABA therapy 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 give up now - halfway through our intense but so inspiring journey!
I look to our supporters and guardian angels for continuing to play a huge part in Alex's improvement.
Together, I am sure, we will be able to give Alex his biggest present in life - allow him to find his true Self in a functional and creative way, not in a reliant and destructive way.
For my child - I will give anything but up.
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
Updated 29/04/2020
My boy Alex was diagnosed with Autism 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 overstimulated and could not control his emotions and therefore could not settle for sleep for several hours and kept waking up many times through the night. Hundreds of sleepless nights and broken sleep for everyone in the family.
- being unable to enjoy his mother's 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; flapping 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 for Alex and everyone around)
- being unable to enjoy sharing his joys with anyone around, as he 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 educational setting and empower Alex's inclusion with other children. Alex was excluded from his nursery at the age of 1y9m as the staff could not meet his needs.
- being unable to communicate with my son due to his total detachment which is the result of his deep self-stimulatory repetitive behaviours.
- being unable to facilitate Alex's development as no classic 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 get him to participate in 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 punching 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 an impressively physically able and tall boy as he is.
Alex was discharged from the NHS paediatric services from our community hospital at the age of 2y9m as the UK healthcare system has no effective therapy to offer to 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 scientifically proven therapy is widely used in the US for children with autism from as young an age as 18 months; it does not involve use of any drug/suppressant/etc and instead is based on the 40-hours-a-week carefully tailored play therapy delivered by highly trained and qualified professional tutors at home in an environment most comfortable to a young child. The goal of ABA therapy is to increase behaviours that are helpful and decrease behaviours that are harmful or affect learning/functioning. ABA is a lifestyle, a set of concepts that have changed our lives to the brighter better.
The professionally delivered ABA programme is very costly:
- an hour of a consultant's time (they devise the individual programme and review progress monthly to adjust the targets and provide training) costs £150 and we need a 3-5 hour input monthly
- an hour of the tutor's time (they put the programme into practice on a daily basis) costs circa £35 and a minimum of 35 hours a week is recommended to achieve visible results.
Inspired by my findings, I got determined to provide my child with 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 which aims at restoring correct jaw functioning, Alex finally learned to chew (by the age of 4!). He has now become a real gourmet!
- After 2.5 years of incredibly hard work Alex has not only started imitating sounds and pronouncing syllables, he currently uses over 50 words and 2-word phrases for functional communication and around 100 words to describe things that he sees around him. 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.
- After an 18-month-long fight with the local authorities, Alex has finally got the right to attend a mainstream school with a 1-2-1 individual support. He knows ALL phonics, is starting to learn to read simple words and is able to count objects.
Alex is truly thriving with the input from the ABA early intervention therapy. He is taking interest in playing simple games, gets inspired by new books, 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!
The programme is still very much work in progress and around 2 more years of full hours therapy sessions will be required to be delivered at school and at home 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 peers through functional communication and shared interests
- be able to access the national curriculum with intensive support at a mainstream school
Every month I pay just over £3,500 for the programme which sums up to around £40,000 per year.
In over 2.5 years of therapy I have spent over £100,000 on Alex's ABA therapy 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 give up now - halfway through our intense but so inspiring journey!
I look to our supporters and guardian angels for continuing to play a huge part in Alex's improvement.
Together, I am sure, we will be able to give Alex his biggest present in life - allow him to find his true Self in a functional and creative way, not in a reliant and destructive way.
For my child - I will give anything but up.
Organizer
Victoria Alexander
Organizer
