Hi, this is the story of our beautiful boy Ahmad.

He was the most serene, happy, gentle baby... He acheived and was surpassing all his developmental milestones... Walking, communication, social, speech ,babbling, fine motor, gross motor... etc He was extremely smart, playful and social... He could literally go anywhere and make friends with kids in minutes... He adored his grandparents and loved to spend time with them... Our firstborn Baby Ahmad was perfect and had completed our life... an absolute joy and a ray of Sunshine...

Ahmad was neurotypical until the age of two but slowly we noticed him slipping from our hands. He was responding less and less to us. All the professionals advised that he needed social interaction. Mom was nine months pregnant and taking Ahmad to five different stay-and-plays so that he could get as much social exposure before turning three.

His dad went to London for a five day work conference and when he came back home, he could not recognise our sweet boy. The first major autistic regression had reduced our child to a shadow....the behaviours, sleep and speech regression, food restriction, stereotypy/stimming, OCD, crying episodes lasting up to five hours a day, self-injurious behaviours, rigid rituals, severe meltdowns, irrational fears etc followed. He got the official diagnosis of severe non-verbal autism spectrum disorder. Meanwhile we burnt through our savings trying to get private speech therapy as the system failed to give him access to any services. The system has failed him not once, not twice but numerous times and continues to do so to this day.

At age 3, we were advised to find a nursery place to help improve his social interaction and communication. In the first nursery setting, Ahmad was left to cry (cry it out method) which traumatised him.

There was further pressure from professionals to put him in another nursery. Ahmad joined a second nursery for 3-5 hours a day, however the staff could not cope with him for more than 1-1.5 hours.

Going to nursery became a daily battle. Ahmad resisted. Refusing to leave the car and crying constantly. His self-injurious behaviours and meltdowns worsened. He tried to run onto busy roads on multiple occasions.

The professionals agreed to start the education, health, and care plan (EHCP) process while he was attending this nursery. During this process the nursery came forward and refused to keep Ahmad on as they deemed it unsafe. Ahmad was now of statutory school age, however the local authority (LA) had no placement for him. They advised us to keep him at home and wait for a placement. On hearing this, Ahmad’s mum burst into tears as it seemed that the LA were washing their hands of him. On seeing this the area SENCO felt obliged to offer Ahmad a placement in a nursery school. Despite the third setting’s various reassurances Ahmad was left in a corner to eat playdough (despite a gluten intolerance) and was passing blue playdough in his stool. At pickup time mom witnessed another autistic child being dragged into the sensory room by the classroom SENCO (an autism parent herself). Ahmad did not go back.

Ahmad had learnt nothing from the nursery settings.

This forced us to do our own research, which led us to the amazing world of Applied Behavioural Analysis (ABA) and to the some of the best trained consultants in SEN from Skybound Therapies. The only snag – it was expensive and we could barely afford it. We were so desperate to keep our son safe and happy that we were ready to take loans/re-mortgage our house to get our son ABA therapy in a safe environment. ABA was a gamechanger. It finally allowed us to address his behaviours and communicate with him. He started to learn.

We requested the LA to include ABA as part of Ahmad’s EHCP. Meanwhile, dad increased his work and took out loans to fund Ahmad’s therapy. Ahmad had ABA five days a week for three hours a day. We gathered evidence to show how effective ABA therapy was for Ahmad. Sadly the LA refused to consider this evidence or Ahmad’s needs and issued an EHCP without ABA. The fight for our child’s basic human right to access education had begun.

We found a solicitor who formally proposed amendments to the EHCP, along with supporting evidence from six months of self-funded ABA sessions. This came from our already overstretched pockets and caused immense financial, emotional and physical strain on the family. Ahmad’s fears, rigidity, and crippling social anxiety had imprisoned us in our home and nobody in the system was ready to help us.

Our solicitors were able to persuade the LA to offer Ahmad a fulltime home-based ABA programme. Since then Ahmad has thrived and made massive strides. Our son is a happy little boy making huge progress, functionally (became toilet trained!), emotionally (regulating himself), and socially. Every year the council reviews with a view to remove his provision causing immense mental strain to the family. The system that is supposed to protect our son is actually letting him down. During this time Ahmad has had MRI scans, EEG’s and multiple hospital visits due to various medical issues. He requires 24/7 supervision. Ahmad’s dad had to start working from home (taking a paycut) in Oct 2019 so that he could help with our son’s caring needs.

Following Ahmad’s last review (June 21), the LA agreed to continue funding his provision until July 2022. However, in a highly irregular turn of events, the council decided to carry out a statutory reassessment of his special educational needs in Nov 2021. When the council-funded educational psychologist came to review Ahmad, we were shocked to see that she had a pre-written draft plan. Ahmad’s ABA provision had been removed from it.

We had further disturbing news that Ahmad had been diagnosed with Verbal and oral Dyspraxia and motor planning issues. We were desperate to find answers and had to pay for all his assessments privately again.

Despite submitting up to date evidence of Ahmad’s progression, the LA removed all trace of ABA in the new draft EHCP. Despite our concerns and a solicitor letter, they refused to reconsider and issued a Final EHCP a few weeks later. The local authority has refused to take into account any of Ahmad’s needs. The LA claim that Ahmad has made very little progress with ABA. On this false pretext they removed his educational provision, even though multiple independent professionals involved with Ahmad have been amazed at his progress, including the LA commissioned Occupational Therapy team. They were so impressed with his progress that they wrote Ahmad ‘has made fantastic progress since his last review’.

The LA communication and autism team (CAT) SEN teacher also commented during her assessment ‘how she wished that every special child had the opportunity and environment that Ahmad has in his home ABA programme’.

Unfortunately the LA ignored these comments, and indeed the Ed Psych confided to the parents during the assessment that the council would be removing all of Ahmad’s provision. The system is failing our son again. We have no option now but to proceed to tribunal.

Ahmad’s family is asking for your kind support to help fight a legal battle to reinstate our son’s home ABA provision. This will give him the best chance at living safely and independently when he grows up, and when we (his parents) are not around anymore. We have been advised that the tribunal costs and independent Educational Psychologist report could total to £20,000. As of 25th April 2022 the LA has stopped all funding. This means we also need to self-fund his therapy at a cost of £3000 per month. We would be grateful for your support to our family during these difficult times and for those who cannot financially support us, we would humbly ask for prayers and kind thoughts for our son.

We will keep everyone updated with the upcoming progress of our case.