5 JUNE 2021

John-Paul’s Story

by Louisa Callaghan

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Hi Everyone, my name is Louisa, I live in Islington with my five children I am currently separated from the kids Dad, but we have a good relationship and I try to do as much as a family as possible.

My son John-Paul was my fourth child. I would say I started to notice differences in him that I hadn’t seen in the other children from around him being ten months old. He never responded in the ways my other children did, like with cuddles and I would get very upset at baby groups, especially music groups (we were actually asked to leave one because he was so distressed). However, John-Paul was also very advanced in other aspects; he crawled at five months, walked at nine months and could make his way up and down stairs from around that age too!! We have always called him baby Spiderman due to his expert climbing skills!! Due to the fact that he was so advanced in some aspects, my other concerns of his delayed behaviour seemed to take a back seat and he was happy at home where he obviously comfortable and has always been very healthy.

When John-Paul was twelve months old his little brother Gabriel came along, and this seemed to make John-Paul more distant. He never came near him and it was like he was almost invisible to him. This was heart-breaking to me as I had vision of two little boys being the best of friends and experiencing everything together. There are quite big age gaps with my other children Isabella is 20, Jody is 16 and Minnie 10. So, having two little boys so close in age I thought would be wonderful for them both. It was around this time John-Paul really started to raise concerns in me. I noticed he had never responded to his name or barely made eye contact with anyone but me. Then the hand flapping started, walking on tiptoes and he only ever played or shook wooden toys. I contacted my GP and they told me he was far too young to diagnose anything and I shouldn’t compare him to my other children. Though this was difficult, I wasn’t so much comparing but noticing massive differences in John-Paul’s behaviour and his lack of communication, he wouldn’t ever point to food and would sit drinking an empty bottle until I would fill it for him.

I wasn’t happy with what the GP said and took John-Paul to Holly House independent Hospital where we saw a Consultant Paediatrician Debi Ray. She agreed with my concerns and referred me back to the NHS for an urgent referral to a social communication team. We also were referred to audiology and John-Paul had Glue Ear in both ears and we had grommets fitted, this helped improve his mood quite a bit and being able to handle different social situations slightly better. We were then referred to a special need’s playgroup then after six months we were stepped up to the waiting list for a social communication team. I think we waited around 13 months for our assessment.

Whilst I was awaiting this assessment I started looking around for help in the meantime and specialised therapies to help John-Paul. That was when I found Petra’s Place Therapy centre. I took John-Paul along for an assessment and I was told about carousel therapy which is a series of therapies for twenty minutes each as he would have struggled to concentrate for longer on individual therapies. Due to COVID he only had four sessions as the centre had to close which was such a shame because I really began to notice a difference in John-Paul from those four sessions and he absolutely loved the centre. He would literally run in and not look back which was a first as he never left my side!

Throughout lockdown we stayed in contact with the centre and put John-Pauls name down for the opening of the nursery at the centre. The nursery opened last September, and John-Paul was still very delayed with communication, virtually non-verbal, but he loved nursery and it was a sanctuary for him when we used to pull outside he would screech with excitement. At this point John-Paul still hadn’t had his social communication assessment or diagnosis. We finally received that appointment for November of last year and two weeks later John-Paul was diagnosed with Autism. Although I knew in my heart, I always thought it was going to be mild and all the therapies and nursery would be able to help him become normal (which I feel dreadful for saying or thinking). Though I was told he flagged all areas on the rainbow of impairments and will really struggle to speak and will never understand facial expressions to name some of the concerns. I cried for days and really was nowhere near prepared or did I know half as much as I thought I did. I then had the fear of what will happen to him when I’m not around as I had John-Paul when I was 39 and all of the what ifs. The biggest part was acceptance and not taking no for an answer. My wonderful intelligent little boy is proving everyone wrong every day, he sings many songs, can name every object you place in front of him, he knows the alphabet and can now count to 20. He is slowly but surely starting to communicate with words and has been having Speech and Language Therapy and Occupational Therapy at Petra’s Place and he loves them, he doesn’t even realise he is in therapy which is great. John-Paul has another 18 months at Petra’s Place until we have to find him a school and I’m so excited to see his progress in the coming months. It truly is a haven for John-Paul, and somewhere I can leave my little boy and have complete trust in everyone and everything that is being done for John-Paul whilst there.

The Author

Louisa Callaghan is John-Paul’s mother. She has three older children and one younger than John-Paul.

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