Hi all,

We've had one of those weeks where I've felt a bit riled up and frustrated as a parent. Which of course coincided with the return of school in England...

I'll explain why.

This is not limited to hypermobility, but any additional need a child or young person may have. Reasonable adjustments (which are required by law) are made on "paper." For example, a leave early pass or sensory breaks. Hallelujah, we think.

But then it happens... "No, you can't use that pass again today - you can't use it every lesson." Or "They didn't need/use those accomodations anymore so we took them away."

No. I'm sorry. Where exactly does it say that your child only struggles with those things only once per day. Or once per week. Does it specify in their plan it must be limited in this way? (And if it does, I'd still question why). Has the school ever considered that comments such as those above are to blame for the pupil not using their passes/time? Have they considered how those comments might be perceived by their peers, particularly when their disability is invisible?

If you are having any of the difficulties I've described, firstly, you are not alone. Secondly, it is exhausting to have to advocate over and over again (often with the same member of staff!) - it even causes anxiety for many of us. But there is always help available. For example, try searching for local advocacy charities. We have one in our area specifically for supporting with education - they even supported us in an educational tribunal. Thirdly, consider whether your child may need an Educational Health Care Plan. I am hoping to write a longer piece about this when things are less hectic, as there are many myths around in terms of eligibility, and whether your child will get one or not.

There are some amazing staff out there, don't get me wrong. But I think a lot of us have had at least one experience as described above.

My biggest advice would be:
1. Make sure you've calmed down at least a bit before entering Mama Bear mode.
2. Use terminology such as "reasonable adjustments" as these are required by law.
3. Ask to see a policy of where it states your child cannot do XYZ every lesson/day.
4. If you have to, be a broken record - remind them of previous agreements.
5. Always communicate in writing wherever possible. This creates a permanent paper trail.
6. Ask how temporary members of staff (e.g. supply staff) will know about your child's care needs.
7. Seek support in an advocate wherever possible.
8. When you can stand, Mama Bear down for a second give her some air and let her breathe! It’s stress you don’t need, so if you can drop it, even for part of a day, do that!
9. Don't be afraid to seek support for you as a parent - this stuff is damn hard. It's brought me to tears on many occasion. We have so much emotion invested in our children, that sometimes we need some help to work through that powerful stuff, that often feels so unjust. This is not admitting failure - quite the opposite. To be the best, you've got to look after you too.

I think that's all for now - it's been a long week!
Hope you all have a restful weekend.

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