Hello, I am the parent of a 14 year old girl who was disagnosed with Asperger's only one year and a half ago.
I am having a wonderful time being a parent. I am no where near perfect, and some days I question myself...but it is a beautiful job being a mom.
I would just like to say is that we need to trust our gut and find out what works best for our children. I didn't have any difficulties until my daughter enter school. She has been 'diagnosed' with so many things and so many alternatives that it has left my family divided. But in the end I was the one who heard her tears and learned what she needed. And yes, I also sifted through professional help.
When she couldn't be hugged, I would make a pillow sandwitch and hug her. When she got too big, I found an OT department that really cared, not just what I had to say but what SHE had to say.
But things were not easy...I fought the school department, I questioned every diagnosis, even payed out of pocket to find out why she is 'outside' of the box.
However, what really burned me is this: Early this year I almost died. It was the scariest thing for me...not that I feared death, but I wondered what would happen to my little girl. And her father didn't show one ounce of consern for her feelings. I am divorced, and my ex-husband and I had a decent relationship. He is not here to diffend himself, so I can't go into to much detail. (Plus he is the father of our child) But I am so hurt that he didn't see my death as a wake up call about our daughter. They have a very sad on again off again relationship.
So, I have learned that not even death will change how people view our children. We may be gone tomorrow, so we really need to teach our children how to 'live' and give them all the love and support they need.
Thanks for this oppertunity. I look forward to our discussions.
Hi anag, do you have life insurance, and do you have a will? These things can give some peace of mind should something tragic happen to you.
There can be special provisions made in a will when you have a child with different needs, to specify who will care for her, and how, and have a trust made of any life insurance money to protect her future.
Hello Anag, I share your feelings about your struggles for your daughter's happiness as well as your concern for her after your death. My regular prayer is 'Please don't let me die, they still need me' My two children would be lost without me - and I have a husband here living with us! I have a thirteen year old boy who was diagnosed with Asperger's at the age of five (I personally knew it when he was three) and a seven year old girl who started off with a PDD(nos) diagnosis at three which seems to have been overruled by a diagnosis of ADHD and anxiety disorder at six. She's had Obsessive/Compulsive Disorder and Oppositional Defiant Disorder thrown in there over the years too. Also bipolar - but everyone says she's too young for that diagnosis. AS looks SO different in girls!! I'm waiting until it's too obvious to ignore but the ironic, somewhat humourous twist to this is that I was just diagnosed this year at the age of 40. (Boy, it sure explains a lot) So now the same people who wouldn't see ASD in my daughter want to look at her again.
I told you all this background information so that you'll understand something of where I'm coming from. I really believe that our children need to grow up feeling so secure in their individuality that they will bond together in their struggles on their own terms. We need to teach them that there IS a community of people who value and understand them - or if not understand them, at least respect the fact that they don't need to understand them to accept them. If the more able ones feel responsible for helping the less able ones to survive in this world, we can feel confident that they will be alright in the long run. There are so many Aspies with so many talents and abilities, together I think they can support and advocate for themselves.
My son is also physically disabled and I have a few special friends with disabled children who share the same concerns about their deaths. Many parents agree to set up a network of friendship and pool their resources to provide a safe haven for their children where they know their surviving friends are looking out for their kids they way they would themselves. I haven't worked this out yet, but I know it's extremely important to put something in place. I think most of us are working so hard every moment of our lives on simply surviving that it's hard to look beyond today.
Just know that you're not alone in this and that having a partner doesn't necessarily make the situation any better.
I am new to this forum, and although my son (17 yrs) is not as high functioning as the people here (he did not really have communicative speech until after the age of 10) I think as parents we all worry about our children the same way. We are so used to protecting them and seeing the world as dangerous to them. I am divorced from my son's father, and though he is a very good and loving father, I make my financial and legal plans as though I am the only parent. I have a complete estate plan including: will, living will living will for my son as his guardian, power of attorney, and most importantly, his special needs trust. It is important for those persons who may not be able to fully support themselves financially as adults to have a properly written trust. I name the trust as my beneficiary on all of the life insurance I have purchased on myself. Life insurance is quite cheap now. Thats the nuts and bolts.
More importantly I have tried to encourage my son to think and plan and dream about the shape of his own future and the life he wants to lead as a grown man. I believe that it is my job to help him to make that take shape. I try to make sure that he has tools and skill to enable him to have freedom and self determination. He is a happy guy and people are attracted to his quirks, charm and intellect. I count on his ability to form friendships and relationships that will satisfy his particular need for society. We have to be able to let them find their way and their place and not saddle them with our fears and our dependency. It can become a bad habit to think of kids as our emotional dependents when they really are fine and happy young men and women.
AnnMarie,
I applaud you for your courage and loving acceptance of your son! I only wish all NTs were as compassionate and understanding as you.
Alison
That's so :'-( what happened to you with the near death experience. The way your husband acted sounds atrocious. You're right though, I know my parents instilled a sense of self-value in me that doesn't depend on the validations of others. Ok, well the validations of others that aren't like, hot guys realistically, lol.
I think people who see a lack of sociality in AS/Aspie kids really don't see that it's actually a plus. There's less of a risk of them getting into trouble from peer pressure. So if they grow up and maybe not have so many friends, but know what they enjoy and find a way to enjoy it. It's better than alot of things I've heard that have happened to NTs who need peer-acceptance.
AnnMarie, on what you said regarding saddling your children with your own fears and dependancy. I'll admit I'm not as functional maybe as I could be, but my dad, who also now is considering that he's probaly Aspie himself. Is really emotionally attached to me, as I am to him. So it's like symbiotic relationship, where if something happens to one then it's like it happened to both people and they're both just as upset. If that makes sense.
So it's like sure, I could learn to cook (My parents are kind of afraid of what would happen if I got burned, since I have a sort of sensitivity to that sort of touch), move out, but it's like I feel I have a responsibility to be here for my dad, as much as he feels a responsibility to be here for me.
My mom who's NT, I do love her, but it's not the same thing as when you're in a relationship with someone who's just as Aspie as you are. It's that you have to concern yourself with two people's emotional states, seeing as it's easy as an Aspie to work yourself up into an emotional mess. At least it is that way for me.