I’m very big one sharing our stories. I think that by doing so, we allow others to have a better understanding of what Autism means to us, both collectively and on an individual level.
I love getting input from other parents touched by Autism as well as the adults with Autism.
One of the things that I have been wondering, but have never gotten around to asking is this. If you could make someone in your life understand, and I mean truly understand one thing about Autism and it’s impact on your life or the life of your family, what would that one thing be?
I would have family understand that my husband and I are not just doom and gloom; that we are not trying to be negative when it comes to our son. We just want to be real and realistic.
My recent post London’s Diagnosis
We are very lucky in that the people with whom Jacob has regular contact are those who love him and us very much and if they don't understand some things, they take our word for it. My struggle is figuring out in what circumstances I have to explain his condition and it's profound effect on our lives to people who don't know him and aren't obligated to be sympathetic, like at work, second tier relatives and friends, etc. If I have to explain one thing, it always seems to require an explanation of a million others. We try very hard to respect Jacob's dignity as a person, and it's boundaries are constantly moving.
My recent post Detente
These are all really great things. Thank you for sharing them with me.
My wife and I have quickly come to realize that people in our life, be it family or the few acquaintances we have, see our autistic child like the cover of a book. Our little boy is adorably cute (yes I'm bias, we all are), and they see cute and associated it with "Oh he looks so good! What's all the fuss?" They don't, however, see him for more than short periods at a time. We have learned our boys behavior patterns well enough to know when he will tolerate company and this is the hardest thing to get through to people. We are more often left out of the loop and I fear its because we have more frequently had to stay out of social events. Its not that we want to stay away from people. We are just making more sacrifices for the comfort of our autistic child. Unfortunately, we also have an older boy who is now seeing the, for lack of a better term, abandonment of our relationships with family and friends.
I guess what I'm trying to say is, I want people to understand that raising an autistic child is a lonely lifestyle. From what I've gathered through speaking with other parents of autistic and other special needs is they most often feel alone and separated from the "outside world". I would really like my family to understand this.
I would want them to support my decisions and not question them or give unwanted advice or opinions.
The far reaches of autism. How it's roots grow into nearly every choice you make for your family, from where you live, to what you earn, to what you eat and where you can and cannot go. At the beginning of this whole saga, I was working full-time and had a plan. My-plan-has-been-foiled. And even when I think I have a new plan-the control is not mine. So it is a series of trial and errors that leaves a family in a constant state of flying-by-the-seat-of-their-pants. If you have control issues, um, autism will set you straight.
My recent post Entry Fifty-Five: What Would You Do?
That I have been this way for forever and my kids will struggle just as I did growing up but that now that we know what it is and how to help, it can be easier for them than it was for me. They just have to be willing to accept it.
My recent post A typical evening…
That it's not my fault, and it's not his fault. There is no fault.
Gosh that's a hard question. I can't really answer that in just one..
Either my mom to understand it all together, or at least the sensory part. At least so she doesn't think it's just me trying to be difficult.
I have been through that myself. I feel your frustration 🙂 Thank you for responding ….