Big slap in the face of reality

[ilikemysleep]

Took my DS (aspie, SM) to visit his secondary school today. They had arranged a special 1 on 1 visit with SENCO as a 'preview' to the generic year 7 visit in a couple of weeks. They have also arranged for him to be in a tutor group with the 2 friends from his class going to the same school, and have chosen a tutor (who he will have y7 to y11) they think will be a good match - not shouty, calm and clear etc. Senco showed him the year 7 planner, the dining room, how to buy stuff, etc etc. He was even greeted by name by the headteacher, which impressed me :) (I am sure DS didn't know he was the headteacher!)

DS clung to me as soon as we got out of the car. He clung to my arm with both his arms, he even tried to put my arm round his shoulders. This is a kid who normally avoids touch. He did not speak or smile or look at anyone at any point. There was no verbal communication and he only managed to shake his head twice. He was totally mute, totally avoidant, until we got back in the car when he literally exhaled and started moaning about being hungry.

I know he will settle in and it will be okay but it reminded me yet again of how disabled he really is in terms of his communication. I feel quite sad about it today.

Hopefully Ilike is still lurking, at least. I find it really useful to have professionals on our board. We have teachers, SALTs, TAs SWs and an EP who are parents of DC with SN. Their viewpoints give a unique balance to some of the threads and I would be very sad to see you go.

It's not just the viewpoints. It's the real person behind them and the other stuff.

I'll miss her ds and his story.

OP I'm sure you're very proud of your professional contributions, and rightly so. Because of this I don't know whether you are able to post without highlighting that but you can name change for the times you'd rather that part was anonymous!?

Hidden, I mean!?

Also, Ilike, I have a lot of respect for professionals who try to work within the system, instead of chasing the dollar. The most vulnerable DC are those whose parents not only can't afford private EPs, some actually don't have the capacity to get involved with their DC's SN and SEN, and others simply don't care. It's left to the professionals who work within the system to help these DC.

I got woken up by ds2 and now I have got this thought stuck in my head and I won't be able to sleep until I have typed it up here.

Think of it how it goes on the main board on a regular basis.

Poster A - My ds1 got wacked by a big lad with LD. I hate kids with SN, blah blah, blah.
Poster C (MNSN) - I am sorry your kid got hurt but can you explain what the circumstances were so we could help you understand.
Poster A - I don't care.. I hate everybody with SN... blah blah blah.
Poster B - yes, my son got bitten too, so now I hate them too...
Poster C(MNSN) - But thats not true of everyone with SN, you can't tar everyone with the same brush.. our dc will never do the same unless there are provoked, stimulated etc etc(insert reason here) and we try to control their environment as much as we can, but sometimes shit happens.
Rest of the MN - yes, we agree with posters A and B, we hate it too.
Poster C(MNSN) - Yes, but its not right to judge everyone the same because of this one incident.
Rest of the MN - No we don't care, we have made up our mind.

Haven't we said several times that we are happy to educate on the main board, but we need to have some level of engagement so we would prefer the thread to go like this.

Poster A - My ds1 got wacked by a big lad with LD. I hate kids with SN, blah blah, blah.
Poster C(MNSN) - I am sorry your kid got hurt but can you explain what the circumstances were so we could help you understand.
Poster A - Yes, we were in a busy supermarket and the queue was very long. There was a lad behind me with her mother who seemed like she was struggling with her shopping/lad was overstimulated with the noise/mother was simply incompetent.. etc etc..Mum went to deal with spilt shopping from her trolley and next thing I know my son was crying and shouting that boy hit me...
Poster C (MNSN) - insert response based on the reason given above
Poster A - yes that makes sense. I will be mindful of that in the future.
Poster B - ah yes, that explains why my son got bitten the other day too.

Now substitute poster A and B for MNSN posters in this conversation and Ilikemysleep for Poster C defending her profession and you can see it must get pretty tiring for her every time just as it is for us on the main board. I think it is only fair that we practice what we preach and perhaps bear this in mind when she is on a thread. Use her expertise rather than question it every time..

Dunno if you?re still reading but in case you are I just wanted to say, congratulations to your DS and to you too. That visit to the school must have been so hard for him, yet he saw it through. That?s a real achievement and although it hurts terribly to see how much our kids struggle it?s still a good sign that in future he will able to succeed at the things that matter most to him. And you will be there, doing a great job of supporting him.

I am so sorry you feel uncomfortable here as an EP. I guess you must see ?the system? from both sides. I found it very beneficial that my mum used to be an ASL teacher (remedial teacher as it was then) she had experience of helping aggressive/disturbed/unusual kids, and when things went tits-up for my DS she gave me some great advice on how to talk to the school and how to navigate ?the system? to get help for him. So if you can bear to stay around, then do, we value what you have to say!

What dev9 said.

I would also add that any professional with a dc who has significant SN is more likely to be 'one of us' than 'one of them'. And that no matter how much the people in our dc's systems have failed, we ought to remember what MNSN say "though many posters have specialist experience of SN, if they post here they are posting as parents, not as experts".

And we need to bear in mind just how sh*t it is at times, that no matter what our 'other hat' is, being a SN parents is far and away more difficult (yes, and sometimes more rewarding too, please God). Remember how hard Ilike's day was when she started this thread