By Michelle Nunn, whose daughter has Myalgic Encephalomyelitis.
Can’t believe that in a few months’ time Makayla would have done her 1st year at her new school.
It seems like it’s been so much longer. Well actually it has been. Months before open days to look around schools, I sent out emails asking to meet the SENCOs, explaining that Makayla had M.E and wanting to know how they would best deal with her needs. Sounds weird but my thinking was if I left it until the open days staff were going to be too busy to talk to me so I wanted to make sure I had all areas covered. Plus, if Makayla wasn’t well on an open day that wasn’t going to work.
I found one school that really stood out. They understood her illness so well yet other schools did not. I was lucky as we got the school that we wanted. Even better, it’s less than a mile away from us.
Once I found out we got the school that I wanted I made contact with them as it now seemed real. I explained she was on 3 hours a day which they respected and said they would follow. I asked about attendance and was told if she made it in for her set hours, then the hours she was not time tabled in would not go against her. I also explained that she does not do PE. I’ve heard that some schools still like to have the children get changed into PE kit and do something, even if it’s helping the teacher. I asked the school if she could be excused from this, as carrying around PE kit then getting changed was a big waste of spoons. The school were great and said she would not have to do this.
Once school places were announced in March I went into action!! Because I made contact early I was told that I could rent a locker, but lockers went on sale in June, so I would need to log in and rent her one. This heads up was great as I heard a few weeks later there were no more lockers available. Chuffed mum, one less hassle and one less worry.
The new head of year visits the children at their old school. Makayla really found this helpful and what’s more they arranged her visit around her hours. This was great as they also arranged for Makayla to come in and have a quiet visit around the school with a smaller group of children. Makayla loved this visit. She was one of 8 and they did some pottery, which she wasn’t sure about, but when I spoke to the teacher he was fantastic and went and really helped her and it was so nice seeing her enjoy herself.
Within Makayla’s school, a special department called student services look after ill / SEN children and on the day Makayla went in one of the
teachers from student services came and said hi and took her off to student services to show her around and meet the staff. This was great as it put her mind at rest and mine too.
Makayla had extra visits at her school from the SENCO, even the head teacher came out to meet her in her own environment plus 2 members of staff from student services.
Transition day came and off she went as happy as anything no worries and true to form I didn’t even get a bye mum let alone a kiss. I really think all the meetings before helped with this. I arranged with student services that if she wasn’t feeling well they would call me and I would go and collect her. Yep I got a call but to my surprise to say she’s doing fine, she had made some friends (sounds simple but she was the only one going to this school from her junior school and because her illness she didn’t know anyone!) When I went to pick her up she was beaming so nice to see she had a great day.
After this I had a meeting with the SENCO, head of year and student services. We talked about her hours and again they said 3 hrs with no sport. We talked about homework and they do maths online which I was up for as she’s missed so much education but the maths is very easy only takes a few minutes to do . She may get the rare project to do but nothing major. I was really happy with this. I want her keeping up with her studies not falling behind any more.
I asked about the what if she’s too ill for school was told if I thought she was up to doing a bit of work they will see if the home tutor was available to come and spend an hour with her. I heard from other mums that children have to be off x amount of days before they will send any one but the school said no they will send out whenever I feel she’s up to it.
Then we talked about the big one, rest break, which is something Makayla hates. I was so impressed that they refused her break times during the school break.. They said she will come out of lesson 5 minutes before the end, have 5 minutes in a quiet room, then she would be ready to go out and have some social time with her friends. They said that for the first few weeks they would make her have a break but after a few weeks they would let her take the lead on this.
I asked about medication. We all know how the pains, head aches etc. can come out of nowhere. I was told she would have a card to leave the class room so she could go to student services and get medication. Or the card would allow her to leave if she wasn’t feeling great.
School trips!!!! I was so worried she would be made to go on trips but no, I was told student services look at the trip and if it’s not suitable then she would be given authorised absence. RESULT.
I then got a call to invite Makayla to attend a summer school for new year 7’s. They said they could do her reduced hours but their main concern was about her making friends and getting comfy in the school learning her way around.
When the tutors were announced we got to meet them one evening. He filled me with confidence. He told Makayla it’s a learning experience and if she struggled or found something that didn’t work or any problem to go to him and together they would get through it together. He gave me his email!!.
On her 1st day I went in and we looked at her timetable we all agreed core subjects only, so no drama, music, art etc. so that her 3 hours really counted. They even went and got her and included her in the meeting which made her feel special. We set a date for the next meeting to look at how it was going.
I did ask about an EHCP. The senco was honest with me. She said she has a pot of money for students so if Makayla needed anything it would come out of her pot. They also explained how hard it is if the LEA refuse it, then you go for negotiations (sounds like a bitter divorce!!) and she said its stressful and did I really want to go through it, and to be honest, I don’t want any more battles so let it go. We still don’t have an EHCP and not missing it. If Makayla needs any recommendations from the OT such as a tablet, as she has HMS and writing causes pain in her wrists, the school accept the OT recommendation and action it.
One thing that worried me was how would her teachers know she has ME. I was impressed and relieved to hear that any children with illnesses etc. have their photo sent to all members of staff with a description of illness and the child’s needs. They said they send it to all staff rather than just the staff she would have, just in case someone has to cover a lesson then they all know.
I also found making friends with lunch time support staff helped as Makayla leaves at lunch time 3 days a week and being known by these staff really helps as it stops them questioning her which she hates but she does have a card which says on what days she leaves at lunch time!
After 8 weeks I went back in and pleased to say we upped her by a hour a week. They asked her what she wanted to do and she said she wanted to do drama so that was it.
True to the schools words, they have enrichment days and for those 2 days she was given authorised absence. Another meeting was arranged after xmas and again we were able to up her hours.
But it did come to a time when she said I can’t do it mum, I can’t do another hour. So I emailed her head of year who said she was so proud that Makayla had taken responsibility for her own learning. She’s still not been able to up it but we are not under any pressure by the school, if
anything the school are saying no hold back she’s not ready.
I felt like a right nagging mum but her junior school was very small and never had to deal with anything like this so if I didn’t contact the new school to get things put in place no one was going to, not because they wouldn’t, but they never had to before, plus I’ve spoken to other mums who have said their schools say yes, we will do x y and z, and have not done anything . I wasn’t made to feel bad by the new school. I’m in regular email contact, even 1st name terms with key staff. Anyone having to do this for September, the sooner the better and don’t be afraid to ask. There are some good ones out there and I have to give credit to Makayla’s school. I’m sure being in such a fantastic environment that’s stress free has really helped her…. And me!
There is no thumbprint diagnostic test or approved medical treatment for children or adults with ME in UK. Makayla is helping to change that.
Read all about her charity fundraising for Invest in ME Research – Makayla Walks with the Animals or DONATE HERE
JULY UPDATE: How wonderful is this?….
Makayla Nunn has managed her 3rd term with a 100% attendance on reduced hours – the first time she’s managed this in 5 years. Her school – Priory Community School – have been so supportive and understanding to all their students with M.E that Makayla presented the principal Mr Coles with the schools very own Prof. LDIFME!
Support Makayla at https://www.justgiving.com/fundraising/Makayla-Nunn