how do you know if you re getting it right??

[lisa35]

What a rollercoaster of a day, my 11 year old had his first ice skating lesson, started off badly.. loooooaads there (all with dancing on ice aspirations!), hed wound him self right up before hand, days of questions, over and over the same thing (and yes I know why, but sometimes Im pants and loose patience)

 

Anyway, got there, cayous , we and he thought alarger group of confident skaters was the beginners, he was in tears, wouldnt let go, we couldnt get attention of tutor, cut a long story short, another lady who was as much a begiiner as Joe worked out they needed to be with another lady (with just 4 in group!) Consequently I felt awful as I was getting cross with him, etc,etc, and a total stranger showed more understanding!

In end, he loved it, its boosted him so so much, but isnt it hard dealing with the unexpected for our kids?

 

Then this afternoon he said to me Im sick of people prodding and poking me , I dont want to be special, just want to be like everyone else, we re just coming to end of assessments (seen ot, salt, physio, clinical pysch,etc)

 

Thing is, what if we re wrong what if we didnt need assessment and he isnt "special" and we ve made him feel different, all people hes seen have said he has "traits", yet saying that he said to me today I dont understand people mum, they confuse me!!!

Im rambling now, do u think its posible by looking for traits that u see things that arent there, or the specialists see it cos its their job!!??

 

Few weeks ago mum in law said to us, he isnt different, and I guess she feels we make him stand out by having him assessed !!

Confused, rant over

 

Lisa xxx

 

guess realising whata tough world my son faces daily, and I cant make it easier xx

[Cat]

Christine Lenehan the Director of the Disabled Council addressed a conference I was attending and quite shocked some of the parents by telling us that very few children with special needs wants to be special, they all want to be like everyone else. I really do identify with this. My son almost 10 just wants to be like all of the other kids. I have actually never told him that he was special, well not in that sense because I have always seen it as a very bad choice of word. I tell him that he is him, and that autism is part of what he is, and what he is I love He accepts that much better than when someone tells him that he is special. He response to comments like that is usually 'all kids are special to their parents no matter what they have got'

 

It can be very difficult not to make a big deal of the fact that they are different but it has worked for us. Hopefully once the assessment is over your son will begin to feel happier.

 

Cat

[Clare63]

Lisa,

I recognise so much of what you are saying, my 11yr old AS sounds very simular. I too question and doubt myself about his traits and whether or not he really does have DS (dx in Jan 07), My Mum has been really supportive and has done lots of research on the web to help her understand, but my MIL says the same as yours that there's nothing wrong with him and that basically I am too soft !!!! trouble is since dx both my DH and I have realised that my DH also has simular traits and so does my FIL maybe that's why she won't accept the dx. We don't tell our son he's "special" in that way, but that he finds some things more difficult than other people, like socialising, we just try to support him in his particular areas of difficulty and don't force him into to situations where he feels most anxious or out of his depth such as large gatherings.

The process of assessment is long and hard, it takes time to sink in and get to grips with your own personal situation. Don't be hard on yourself and go with your heart.....you are a great MUM <'> <'> <'>

Clare x

 

Sorry if I have waffled on a bit.

[JsMum]

Firstly about ice skating, I hate it, its unstable, hurts a lot if you fall and I just dont like the feeling of being so scared, so I dont ice skate, full stop, funny enough J doesnt pester me to go either and even offered him skating 1-1 lessons and he doesnt like ice skating either once he fell and found it very difficult to ballance and co ordinate, so we know that skating isnt for us.

 

Secondly we have realised that we are good at other things, J is a brillaint climber, has no fear of falling and wants to get to the top like 20 seconds ago, he is great at deep water diving, and excellent cyclist so we know we are good at other things, we stay clear of the things we know we just dont enjoy and stick the thrill of adventure that we get from other sporting activities.

 

As for the social aspects of trying to fit in we have concentrated on the relationships with a 1-1 basis until he is feeling more confortable been with more than that, and he is feeling more confident and aproaching people spontanous now and then.

 

You have to look at the strengths and the positives of our children when they are standing out in situations like ice skating and other similair situations, also he had a go, he attended and he did what he could even though he was scared, so he faced the challenge, more than some I am sure.

 

As for people who comment that our children are normal, yes to others they may well present normal but thats why hidden disabilties are so difficult to get any understanding.

 

You are getting right as you are supporting him and understanding him and been there for him.

 

JsMum