Since I will be asking for volunteers to share their family stories on the Peter Pan Centre blog, I thought I would set the ball rolling by sharing my story here.
I first became involved with Peter Pan in about 2010, when my youngest child, Alfie, who has Down’s Syndrome, was referred here.
But I have been a ‘special needs’ parent for a lot longer than that. To tell the truth, I was a ‘special needs’ parent from the first moment I ever became a mother – I just didn’t know it for the first seven years.
My eldest boy, who’s now grown up, was a very contented child, quirky, to be sure, and headstrong, but very bright. We could see no problem with him at all – he was delightful, until he started school. He had no trouble with the work, but he just didn’t seem to fit in with the class at all. He didn’t seem to be making friends with any of the other children, and the teachers were always complaining about trivial things – he would question the teacher about things she considered inappropriate, like why she’d written the date in a different place on the blackboard, or had made some other change to the usual routine. He didn’t always want to participate in activities with the others. If another child lashed out at him, as one or two of the boys often did, the teachers blamed him for being too articulate, and making them frustrated. In the end they gave up.
The school particularly disliked the fact that he could read fluently – having to borrow books from the junior school, half a mile away, for a child in reception was a nuisance. They put him on School Action and then School Action Plus, without ever explaining to me what these were. In the end they had him assessed by the educational psychologist, who came to no conclusion whatsoever.
In the end, when he was seven, I took him to the GP because I was concerned that I never heard him laughing like the other boys in the street, even when he was with them. Luckily the doctor I saw that day took me seriously and referred him on.
Later that year he was diagnosed with Asperger’s Syndrome. We were told that because he had no learning difficulties the only help we could be offered was a referral to the Autism Outreach Team, who would visit him in school periodically.
Apart from that we were on our own, and had to rely on organisations such as the NSAAA and the NAS for information and advice, and our own wits a lot of the time.
School was tough and I’m glad he’s out of it. Happily, he is now living the student life, completely independently, and is making a far better job of being a young adult than his dad or I ever did — he’s always been so determined to either overcome, or mask, his difficulties.
He was twelve years old and his sister nearly nine, when I realised that I was expecting my third child. Alfie was born six weeks early, on the first snowy day of winter 2008. We were told within half an hour of his birth that he probably had Down’s Syndrome. Over the subsequent days we learned that he also had a minor heart defect and something called Transient Abnormal Myelopoesis a condition which bears relation to leukaemia, but is as the name suggests, transient and requires no treatment, just careful monitoring.
It does mean, though, that he is at greater risk of developing leukaemia in the future. We were terrified – especially when he also contracted bronchiolitis – it seemed too much for such a fragile, tiny body to overcome.
Alfie was, and is, a rambunctious little tough-nut, and apart from a nasty rash, gave little outward sign of being ill. The rash meant that it was six weeks before I knew what his little nose looked like, as the only place they could anchor his feeding tube was by sticking it to the tip with a huge wad of tape.
On New Year’s Day 2009 the doctor came on his ward round, examined Alfie, and told me that, finally, I could take him home. The best New Year present ever.
The following months passed in a blur of frequent and protracted feeds, medical appointments, blood tests and therapies. We had to move house and buy a bigger car. But Alfie went from strength to strength. His blood condition resolved, the hole in his heart sealed itself, and slowly, very slowly he began to develop – personality first. At eighteen months old he was referred to what was then known as the Peter Pan Nursery, in the old school buildings on Orme Road.
I will admit I was reluctant. I had never sent any of my children to nursery other than the pre-school sessions at the local primary school, when they turned 3-and-a-half. However, our portage worker persuaded me that I should at least take him for a visit. By the end of that first visit I knew that taking him to Peter Pan was absolutely the right thing to do.
The staff understood that I was anxious, they understood why I was anxious; and they were unfailingly patient with both of us when it took Alfie a while to settle. Having had a negative experience with my older son’s early education I was particular impressed by the way everyone focussed on the positive, and found creative ways to use his strengths to help him to develop in the areas where he was struggling.
Alfie soon began to thrive. I was given regular updates on his progress, and his key worker shared with me any techniques she felt he responded well to, so that I could try them at home. They helped me through the process of getting a Statement of Special Educational Need, as it was then known, and when the time came to choose a school for him, the nursery manager came on visits with us, cast her knowledgeable eye over the situation and asked questions I would never have thought of.
Merryfields Special School seemed to be the most appropriate place to meet Alfie’s needs, and his key worker took him there for visits, to prepare him for transition. When the time came for him to move there permanently he made the transition well, but I found it difficult to make the break with Peter Pan, so I volunteered in the play room for a while, before becoming parent trustee.
It makes me very happy, and hopeful for the future to see how the Peter Pan Centre is continually developing to meet the needs of the families who use our service. I know, from my two very different experiences of educating a child with special needs, just how big a difference early intervention can make, not just to the child, but to the whole family.