As you know, my Nick is quite the challenged chap! As you also know, there is such a wide range of people that fall under the term Autism Spectrum Disorder! There are also many co-occurring conditions that may co-exist with the ASD diagnosis. In one room you can go from having a child like mine to a child who is extremely capable, one who doesn't have any learning difficulties - although may talk the hind leg off a donkey about a topic that interests him and no one else!!
Quite often I have this internal debate thing going on;
- would I prefer Nick to be the way he is - as in, totally oblivious to the complexities of human relationships and happy with his lot in life.
- OR
- would I like him to be more aware of life and the complexities of human relationships and all that comes with it!
It's a tough one!! If a stranger was to look at Nick and see his odd little mannerisms they would know immediately that he was a child with special needs. BUT, if a child has thrown himself down on the floor in the middle of the supermarket because he is so overwhelmed with the people, lights and continuous noise - the folks around him think he is badly behaved and could do with some discipline!
The general perception of people out there in the real world when confronted with a child like mine is to say "ahh shame" and immediately their expectations of my child are dramatically decreased. Thank goodness I can cope with that now!!!!
What about the kids who are at the other end of the spectrum, those kids who still have the same core deficits as my Nick but who are much more capable? What about those kids that realise they are different to their classmate 'little Johnny'. What about those kids who grow into teenagers and are confronted with so many challenges that they find it extremely hard to cope with what life throws at them................. BUT because they seem 'fine' the general public don't understand them and tell them to "get a grip"
The reason for my ranting is the following story - this has been written by the daughter of a friend of mine. She is not a typical teenager and I think she is very brave to have written this and to give me permission to use it! Read between the lines and you will gain some understanding, however, she hasn't gone into the nitty gritty details of how she really struggles! Thank you beautiful girl for sharing your story xx
Asperger’s syndrome
Growing up with Aspergers syndrome has been very challenging. It affects the way you say things and the things you do. It has gotten a lot easy over the years but as a young girl I battled to deal with it. I tend to stick to my routines and most people won’t understand why I get so upset if my routine is changed.
Often I felt disappointed in myself or angry at whom I am, but I am defiantly working on that and I have seen a huge difference. I am learning to love who I am. I am a very moody person, but I have learnt that those who love you will always love those things about you the most.
I used to have very bad anxiety attacks when I was around a lot of people but I really have taught myself how to deal with it, and I don’t seem to mind it anymore. I never thought I would ever be in a relationship but the day has finally come. I am in a very serious relationship and I have been in it for a year now, he is my best friend and understands me more than anyone. I am very happy with someone like him in my life.
I battled a lot making friends when I was in primary school and eventually I started homeschooling, however I think I needed to spread my wings a bit so I made the decision to move back to school, it was hard at first but I began to enjoy the set routine a lot. Work at school has proven to be very difficult and I battle to keep my grades up but it hasn’t stopped me. I will continue to work as hard as I can in all aspects of life and that is all I can ask of myself.
Oh wow! That was just beautiful!
ReplyDeleteYou raised some very interesting points there about the spectrum too.
I have 2 boys both diagnosed with aspergers and I sometimes feel guilty using the word "autism" to describe them. It took a long time for me to even use it on my blog for fear of offending people with "real" needs.
I feel like we are taking away from the children with severe classic autism and with more obvious needs and because my boys "look" normal (for lack of a better phrase).
A part of me feels like I should shut up and be thankful for what they can do..... but then there's an even bigger part of me that cannot do that because I see the massive struggles that they still have every day and I want to advocate for them.
Society doesn't seem to want to accept that children on the other end of the spectrum like mine still struggle with the same core issues and think that as
parents we are just terrible disciplinarians. I've personally come across a lot of that sadly.
And you're right about another thing too.....my older boy KNOWS he is very different and it kills him. He cokes home from school in tears because he doesn't understand other kids and doesn't know how to make (or keep) friend's.
For what it's worth....I think you are such an inspiration and I admire the enormous lengths that you go to for Nick.....I am learning SO much from you :)