How do you cope?

[tiptoes]

Following on from my threads about my ds who is nearly 5 and has selective mutism I was wondering how other parents cope with a child with special needs.
I am constantly worrying about him and especially since he started school last year I just want to protect him from any unwelcome comments and sheild him from any upset.
As my other thread explains I am at loggerheads with the school at the moment about a decision I feel is the wrong choice for my ds.
I as his mother hope I know him better than anyone and know what would suit him better why then is it so difficult for anyone else to understand that.The school just have'nt listened to me and even the profesionals seem to be getting swayed by the school.

I can't stop this overwealming feeling that comes over me and fret for him for the rest of his school years.It breaks my heart when someone asks himself and he does'nt answer so maybe a clasmate will say "oh that's *** he can't talk"

I am sure parents of NT children have the same worries as me on different aspects of their childs schooling but how do you cope?

tiptoes.

Everyone worries about their children, be it vbecause they have a disability or because they have a wonky hairline... its all relative to your individual situation. I know how you feel.

I can't explain how I cope, I get up and deal with whatever the day is going to bring.I'm growing a thicker skin to bounce the comments off of, and I channel my anger into helping my son, or cleaning!

There are days when I just sit and cry at everything, times when I can't sleep for worry, and times hwne stress is so exhausting I go to bed as soon as the kids are asleep.

Being able to come on here and chat helps, or the yahoo group, which can't offend or attract the mn trolls like htis board seems to on occasion, dare anyone be flippant..

On the really bad days, i can't applaud the value of a icy cold glass of white wine and lemonade [lightweight that I am] and losing yourself in a book for a whilst.. I can recommend alexei sayle and will self!

take care

thats can't applaud enough, oops!

Emmalou78-Thanks for the reply.
I can relate to the tiredness,it's not just physical I think a lot of it is mental tiredness too due to the extra worries in dealing with a SN child.

I used to love reading and will take your tip and get myself down to the library for some light hearted books.I tend to read up on a lot of SM websites and I suspose I am constantly looking for that explaination that will explain all,which obviously does'nt exsist.

I will take a look at the yahoo site you talked about ,I am sure I saw it on another thread.

Thanks so much for your kind words.

I can really relate to your post, tiptoes. As my ds1 gets older his ASD seems to become a little more obvious and I find myself wanting to shield him from situations that he's uncomfortable with or even to answer questions on his behalf.

I don't really have any coping mechanisms that I can think of. Sometimes I find that a few days of wallowing in it all can help and even having a good cry. It also helps having MN and the Yahoo group to post on. Somehow it doesn't feel quite so bad when you know that there are others out there who understand what you're going through.

He's only 5 so he does need you to advocate for him and stand up for what you think is right for him. As our children get older I think it is very important to learn to let go though, slowly at first of course. I find that things like reading, watching a film etc work wonders as its a good way to escape but not yet another appointment! So many people suggest the gym, facials etc etc but to me those are just more bloody appointments! Some people who know me think that I don't get "me time" because I've also got DD but they don't know how much time I spend reading Heat and watching cricket on the telly! I've also decided now to actually PLAN to have times during the week when I have no plans and that is what I am doing, its not doing nothing iyswim.

ti[toes- I think the thing is you sayu you;re at loggerheads with the school. I used to feel exactly as you describe (when ds1 was in mainstream), but since moving to an appropriate placement for him (a special school he can stay at until he;s 19) I no longer feel like that, and I refuse to think about the future as I know that once he leaves school we'll end up with the same situation again, - these are my restful years...... We have 10-12 left!

So what I'm trying to say is put energy into making the school placement right (whether that's through battling with the current school, or looking at changing schools) because once you have that placement right you'll find a whole lot of weight lifts off your shoulders, even if your ds still doesn't talk at school. The difference between sending him somewhere where people listen to you and work with you, than somewhere where you are at loggerheads is enormous.

Excellent advice Jimjams!

Thanks everyone for your useful advice.

I know it is very difficult for others to understand,even family members probably don't really know what it is like.It does help to read the special needs threads on mumsnet as I feel you lot really know and understand what it's like.

I love it when the children are asleep and dh is snoozing on the sofa and I can sit back and relax ,check out mumsnet,flick through the TV and eat a large bar of chocolate!!

I am still determined to go ahead with tryig to talk the schoo round and get them to change their decision.I have talked to so many peope concerned and inconsistantcies keep popping up and I can't ignore them.I might be fighting a losing battle but it's a battle I need to fight for my DS.

Just found this fab website that had a fantastic piece on selective mutism that moved me to tears and with my current situation with the school really struck a chord with me.Thought someone else may like to take a look.

It's www.mamazine.com
Once on front page put in the search box selective mutism and click on the SM title.

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