Big 5 year old

So where are we now?

School... Well, that's a new kettle of fish and I'm not going to sugar coat this because well that's not why I'm here, but things have been really rough lately...

Rhys started school in term 2 this year and when I tell you he was excited, it is an understatement!. We got the bag and lunchbox, the uniform and shoes, you know all the exciting big school boy things but behind the scenes things weren't so easy. Starting school is such an exciting time but as a special needs mum it's also incredibly overwhelming and daunting. I seriously underestimated the amount of appointments, phone calls, emails and meetings it would involve, making sure the right equipment is ready, making sure IEPs are done, making sure school funding is applied for, making sure everybody has access to his medical notes that would be relevant. It's just a lot...

Anyway so his first day rolls around and the school had been outstanding! They had his special seating sorted for on the mat and at the desks, they had redone the weekly schedule to make sure he was able to experience every aspect of classroom activities as he is only there 2 hours in the morning at the moment, They had the best team of teachers and teacher aids set up. We could not have asked for more! Rhys was ecstatic!!!! Mentally was just so ready for school! He walked to his classroom with all his accessories aka helmet and walker ect, beaming with pride and excitement. He went on to have the best first 'day' (he's only there for 2 hours), on the drive home we got what felt like a full commentary of his school day.

The past few weeks have been some of the hardest of our parenting journey so far, Rhys is doing amazing at school! He has made some friends and learnt to write his name, he's doing great cognitively. physically however that's not been going so great. He has been struggling and there has been a huge decline in his physical abilities...

Some days his muscles are so tired he can't even stand so i have to carry him to the car or to bed, the daily things we take for granted like having a shower seem impossible because he can't even hold his head up long enough to sit on his shower stall and get clean without falling to the ground. When he is able to walk around he has been falling a lot more than normal and actually hurting himself which used to never happen. He can't climb into bed himself anymore at all because his muscles just won't cooperate. He has been unable to eat dinner most nights. It has been really rough... for us physically because he is a tall boy and there has been so much more lifting, but mainly because he's so aware now. He's so aware hes different, he's aware that hes missing lots of school because his body isn't coping, Hes aware that his falls have been hurting him, hes aware he leaves school before the other kids, hes aware none of the other kids wear all the extra things like a helmet or have to have special seats. He's just so aware.

Being the kid with extra stuff does not often upset him, it's something he's used to but there is one piece of equipment he hates now and that's his pushchair! It is big and bulky and he barely still fits in it, and he refuses to use it but when i have had to force him in it to attend an appointment or something he gets very very upset. We have been asked 'well what's so different between that and a wheelchair?' and honestly for us not a lot but for him the difference is night and day!. Up until his 5th birthday it hadn't been a problem and he was happy to use it but he is convinced that now since he's a 'big huge 5 year old' he can't use a baby stroller anymore, and to be honest i don't blame him. When was the last time you saw a 5 year old getting pushed into school in a stroller?. There is a mental disconnect with the pushchair between it being an aid and something babies use and I think that it's ok. There are not many 5 year olds who without complaint would rock a 'tubie', splints, belly band, helmet and walking without complaint and If a wheelchair means he can go into school feeling confident and proud even with every other piece of equipment he uses then that's what we will do because he has been through enough.