New to this Feel lonely

[bobbybear1606]

Hi All

I posted last week on another thread but very rudely didn't introduce myself first. My son is 4 he has NF1, Apsergers, ADHD and Hypermobility we live in Northern Ireland. Bob is currently undergoing a statement and we are hoping to get him started in a Special Unit in September.

My son's main issues (apart from his terrible health problems) are in school he is in a class with 34 other children and he is just not coping, mind you neither would I, he gets frustrated upset and then aggression kicks in and he hits out, kicks out or has even been known to bite. This has as you can imagine caused difficulties so now hardly any of the parents even look at me and he is the one child never invited to any parties. My heart breaks for him. I do sometimes feel some of the more able kids wind him up and step back and watch. The teachers haven't been wonderful tbh. He is now starting off on a small dose of Dexedrine so we will see how it goes.

Any other NF mums on here just seems this is the loneliest journey? My hubby is good but he works 45 hours a week so its still very lonely with hospital and therapy appointments every single week I want to run away somedays. At the minute I work 3 hours a day for my sanity sake I would go nuts without it.

Hi again bobbybear. I just wanted to give you a hug. I am in a similar postiion to you regarding having to bear the brunt of the appointments etc while husband (DH) works. My DH works in a Belfast Hospital and it is harder for him to get time off to go top these things. I do work full time though and have a juggling act to perform !

My son was not in a great school eitheruntil this yer (P4) and was put up to micheivous things by his peers so they could laugh at him when he got in trouble etc .... they are so nasty aren't they ? I moved him to a more appropriate mainstream school and he is doing a lot better and it has made a BIG difference to us all at home too !

I am fairly new here and and wonder what NF1 is ?

Would the special unit be at a different school? If so, perhaps you could give up on the 'friends' at his current school and start afresh in Sept. Hopefully at a special unit there would be a few allies for you in the playground and parents of the MS kids would be a bit more accepting.

Have the other children had any awareness lessons about disability? When my DS2 was 5 or 6 (in Y1 in England) the rest of the class had a lesson with the autism advisory teacher to explain about hidden disability. They actually became much more tolerant and friendly. Obviously it's a personal decision how much of your DS's disabilities you want to make public, but it was very beneficial for my DS.

Sorry, know nothing about NF, except for the info I just googled! If you want to get hold of others with experience maybe put it in a thread title?