No one can really tell you or describe to you what it is like to have a child with Special Educational Needs. I have previously had roles in schools as a 1:1 Learning Support Assistant and worked with the teacher to support SEND pupils but it is on another level to care for them at home.

Oscar was a very quiet baby. He never particularly cried and was quite happy to let the world pass him by. This could have been a red flag looking back at it. Because of his possible low tone, he was also slow to crawl and walk and he still finds it difficult to run. At his 9 month check the health visitors were horrified that he couldn’t sit properly in a high chair. There is a general tick box system with things that the child is expected to do, it doesn’t allow for anomalies. When he was younger, he found it difficult to sit properly at a table and fell off the chair a couple of times. In the early days we had a loyalty card for A&E. Autistic people often show stimming behaviour as a calming mechanism. Some rock back and forth, Oscar used to spin around.

Oscar also didn’t babble at the usual age and his speech was very delayed. They booked Oscar in for a hearing test which is standard if there is delayed speech. They wondered if he might have a glue ear. We were referred to an ENT consultant who arranged an ABR (Auditory Brainstem Response), under general anaesthetic. They determined that his hearing was normal.

Each week we went to a church toddler group and whilst the other parents were sitting calmly watching their little ones, Oscar would often just knock a brick tower down for no reason. One particular memory is when Oscar was taken by family to an outdoor tourist site and there were ducks. Whilst other children were excitedly making quacking noises, Oscar just let everything pass him by. It was almost as if he was on a different planet.

At the park, other children are able to be independent but I needed to stay with Oscar all the time as I was worried that he would just launch himself off the play equipment. He has a definite way of playing now and he does not understand the usual rules. If it doesn’t fit his way of thinking, he has meltdowns.

In August 2019, my daughter started school and whilst other children on the school run were clutching their beloved teddies, Oscar carried around an iPhone charger! Many autistic children have repetitive behaviours such as lining cars up but no, not Oscar. This obsession with electric cables still continues. Although Oscar’s speech was extremely delayed, he could say the words multi-way adapter, generator and extension lead. He can spot sockets a mile off. He associates certain multi-way adapters with my friends houses so my friends need to get them out on play dates.

In August 2019, when Oscar was 2 1/2 years, he started a preschool playgroup. It was realised quite quickly that he wasn’t meeting key milestones for instance social skills. In October I booked an appointment with the local GP to get Oscar referred to a paediatrician. I wanted to get everything in place before school. We were put on the waiting list. In the meantime we found a private paediatrician at the Nuffield in Leicester. He diagnosed Oscar in 6 sessions, way before the NHS appointment came through. He diagnosed him on the basis of delayed speech, obsessive behaviours and difficulties with social interaction. We were lucky. It’s such a shame that the waiting lists on NHS are so long and I hear stories all the time of parents waiting years for diagnosis. As part of the diagnosis Oscar also had blood tests for Fragile X syndrome amongst others. All were clear. The paediatrician explained we could apply for Disability Living Allowance (DLA.) We received the high tier for payments and this also allows me to claim Carer’s Allowance.

I went back to the playgroup and the staff there were brilliant in getting the ball rolling on a SEND support plan which was used to support him when he was 3 1/2 at the local preschool. The next stage was applying for an Educational Health Care Plan (EHCP.) This can typically take at least 20 weeks. It isn’t guaranteed and parents can also apply themselves. In January 2021, the preschool employed a wonderful Learning Support Assistant to work with him (she still is part of his team in Year 2.) In March 2021 the EHCP was granted ready for school. It’s a long process but totally worth it.

Oscar is now thriving in Year 2. He knows where he belongs in the world.

Parenting a child with SEN can be lonely. No one with a neurotypical child can really understand what a parent with a neurodivergent child is going through. You need to find your local tribe. There are many groups countrywide that would be useful for parents but for my local area, Spectrum in Market Harborough in Leicestershire was a vital point of contact. They run an autism course called Early Bird Plus, which focuses on many challenges of raising a neurodivergent child. Charnwood Neurodiverse Families Parent Support Group is on Facebook and also Leicestershire Autistic Society.

A great book for children as a starting point is All Cats are on the Autism Spectrum by Kathy Hoopmann