Faith’s Moments

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When my elder two were pre-school age, I didn’t do toddlers or playgroup as I worked just under full time. They went to a day nursery, which they loved. With Faith I cut my hours down to part time so that I worked two 12hr shifts a week. Faith was only with Karl,(my husband) my mum or my sister. I had it in my head though that I wanted her to experience toddlers group, with the plan that I would attend the group that was linked to the infant school the girls had gone to. I was, as I always am, thinking years ahead of her, and planning how she will cope in the school environment and how her peers will adjust to her seizures. At this point she had them every 5-10 minutes on a bad day. I had this clever plan that if we joined a group that would all move up to the same school together, the other children would hopefully become more accepting of Faith’s seizures. So we started mother and baby group and then toddlers group. Faith loved it and at this innocent age her peers didn’t really think anything of it when Faith had a seizure because to them she is just ‘laughing’. When she was coming up to playgroup age, I suddenly realized I was going to have to leave her. I approached the playgroup leader, who was already a good friend as our older children had gone through school together. She reassured me that she would apply for a one to one caregiver for Faith, as the numbers in the group were quite big; she didn’t think it was safe for her without it. After a lot of effort and multiple applications, we finally managed to obtain the funding for a one to one caregiver for Faith while she was in playgroup the two hours. The first week I stayed with her as well, and pointed out the seizures. From then on I actually left her. The first day was very hard for me; my mobile was firmly gripped in my hand, and I sat in a cafe just down from the church hall the whole time. It was the hardest thing ever, actually trusting someone else to look after her. But Faith loved it and came out of there with the biggest smile on her face. After one session a mother approached me to say they were all going to a soft play area for dinner and asked if I like to go. I went, but found it very awkward as Faith was having about 10 – 20 minute gaps between her seizures, the play areas go quite high with slides, and in some areas you can’t see the children. At this time, Faith was still very unsteady and struggled with climbing and coordinating. So I spent the whole time climbing up after her. This was fine on my part, but she was aware the other mummies weren’t and she became quite cross. We lasted the afternoon, but the next time they asked, I declined. Some mums who I had become close with were very sensitive to the issues and started having lunches at their homes. We would take it in turns and I was very touched by this and it worked a lot better for Faith. When the forms came out for school nursery, it was another realization that she was now going to need someone full time with her. My form was hard to fill in. A statement of educational need was put into place, which worked very well and I was most impressed actually how quick and relatively painless it went through. We had a few ladies that would come out and assess Faith and her needs. On one visit she was having a particularly bad day with her seizures and wasn’t responding well to any directions given her. Due to this, the psychologist who came out felt it would be best for Faith to attend a Special school. I had no worries about her attending a special school, but I had hoped she would be able to go to the same school as the older girls as it was a catholic school and she had made some nice friends there now. I also felt, that on a ‘good’ day, Faith was quite bright and it was a shame to base her assessment on a bad day. I explained to them, that I would like to give Faith the opportunity to try the mainstream nursery and If she found this too much then we could look at a special school when it was time to move up to reception. This was agreed and a proposal was put in for a one to one caregiver again. A lady called Sue was employed and she has been amazing, she reads Faith like one of her own, very sensitive to her emotional outbursts and seizures. Due to the school Statement we have meetings every term to discuss Faith’s needs and how she is developing. During one of these meetings it came about that a child who was new to the group had approached Sue and asked, “Why is Faith making that silly noise all the time?” Sue had handled it the best she could, but wasn’t sure what she should call the seizures. The educational psychologist suggested at this age it might be best to think of an innocent name for them that Faith would be happy with. Emily had started calling them dingle dangles at home, but I didn’t really think Faith would appreciate that name following her around school. All I could think of was ‘a moment’, so it stuck. So, at four years old, the others in her class will use this term. One day last week, the class were sitting having story time on the carpet in front of the teacher. Sue had to pop out of the classroom when one of the little boys who was at the back of the group, suddenly stood up and started climbing over everyone else to get to the front. The teacher asked him ‘what are you doing, sit down’. I’m sorry miss, he explained, but Faith is having ‘a moment‘, she needs a hug. How gorgeous is that. So up to now my plan had worked, the children she had moved through toddlers and are very accepting of her ‘moments’. But I know we have a long way to go through the educational system. Sitting in these meetings, I can become quite drained physically and emotionally. Even though a lot of them can be quite positive about her, it is still your child they are all talking about. Your precious little bundle, who needs to have a ‘statement’ and a ‘one to one’ and ‘speech and language’ and ‘physiotherapy’ and ‘ophthalmology’. But hey, ‘Whatever works, whatever makes life that little bit easier for her. . .