I just read probably the saddest story I have ever read related to Autism. On a very lonely night, in a very fancy hotel room mother Gigi Jordan basically euthanized her child Jude and attempted to do so with herself with prescription medications. Her child was eight, and autistic.
Link to the story if you wish to read it.
I read that she had a lot of money, and many people may resent her for that because we all know how more funds would help us regular folk with our children. But this means nothing to me.
But what does mean something to me is the depth of her pain. That is was so deep and so desperate that this was the choice she chose to make, that it seemed to her to be the only way, the right way. How grateful all of us should feel, for not getting stuck in feeling that.
But we the parents of children with Autism are familiar with her pain, we know how sad it is to love your child but not be able to hug them, or give them kisses. How we talk to them and tell them we love them, but they say nothing back. How we have toys and try to play games with them, but they can’t play with us. That we are prepared to teach them about life, what a rainbow is, why the wind blows, but they never ask about these things. How we look forward to building a snowman and making snow angels, but they wind up screaming. How we want to bake cookies or cakes but they can’t hold a spoon and want nothing to do with the activity. How we want to have birthday parties, vacations, participate in children’s activities, but we discover our child is scared, hiding or screaming. We know the pain of not being able to participate in the life of a typical parent. We know the fear that could surround us if we let it. We know. Typical parents may have a difficult time fathoming this level of disappointment and fear. For we have to fear things such as, will my child accidently stab me? We have to fear will they set the house on fire? Will they escape in the night and I won’t be able to find them? Because these things can more easily happen with our kids.
And though I feel for her, and her desperation, I am angry. Not just at her for not taking the time to fully “see herself” but at her family and her friends. These people did not see what her pain was hiding from herself. What kind of self-absorbed people did she associate with? Did she not have a single person say to her “hey your being kind of crazy, what’s going on?” Was there no one, who questioned her choices or her attitude? Because you do not wake up one day and decide to do something like this. This comes after years of it eating at you. And everyone one of us likely knows the disappointment in family and friends that do not support or understand your situation, every one of us has lost friends because of the new change in lifestyle of having a child with special needs. But what we really learned is who our friends were to begin with. Those are the ones we still have; they support and love us and our troubled child. They bring us food, do our hair, babysit our pets so we can go out, they send us cards or give us silly gifts to cheer us up. They are the ones that come over and send you out for an hour so you can breathe; their love is what keeps us from sinking too low for too long.
We all know that having more funds would make the road less bumpy and can provide more opportunity. It can provide for therapists, doctors, treatments, the ability to take care of yourself, provide a healthier diet, being able to do more things because you can bring a caregiver or behaviorist with you. But money will not bring you understanding, compassion or true friendship. It will not bring you an understanding of self either.
Anyone of us with a child with special needs can as easily fall into this trap that she did. We have felt that desperation, but we don’t get stuck there. We are familiar with the ugliness of this desperation and isolation. Though I may have never personally wished my son dead, I have been frustrated enough to want to put him in an institution. But once the frustration passed moments later, I no longer felt that way. But I wasn’t stuck there. For getting stuck there can lead to suicide and killing others. For if people weren’t stuck on the idea, well than it wouldn’t have happened. And getting stuck on something is something we should all understand, because our kids get stuck on things all the time. And we work diligently to unstick them, so they can move on and not are there in the throws of being frustrated.
I am sad for their family today, they have lost so much because no one would listen, including themselves. It is too high a price to have to pay. That is truly one of the saddest things in the world, because it isn’t what happens to us that that matters, it’s what we do after they happen. We can stew on all we have lost with Autism or any illness our disease our children may have. We can focus on those things and one day we may feel so desperate as to destroy our life and the life of the one thing we hold most precious. This is why it’s very important to make the choice to surround yourself with positive people and those that truly love you. This is why it is most important to believe and take care of yourself. There is a saying that the lord only gives you what you can handle, and it is this concept that matters. Not whether you believe in one god over another or any god for that matter. But the idea that you are only given what you can handle, and sometimes we are given challenges in life. And because we are, we are blessed, because this means we are moving forward if we choose to take it. But that only works if you believe it.
This is why I won’t give in to it or stay stuck in any dark place. I have felt the pain, but I walk it off.
I steal hugs and kisses whenever possible, maybe it’s not as much as I should receive, but I have two very very affectionate dogs that more than make up for it. I have learned how resourceful I am, how strong I am, how much I can tolerate, how much I can juggle, how little things do not bother me. I am more organized and prepared than ever in my life. I never have clutter around. My child helps me keep my house clean and neat because that is how it has to be to function. I don’t have to worry about spending money I don’t have on overly elaborate parties or for other kid’s parties since my child does not have that many friends. (yet) And though I love making snowman and snow angels, snow is really cold, and really I am just fine with only being out in it for 20 minutes. All of this, and all that I have experienced with this allows me to not care about things that other people may rely on to make themselves feel whole and valuable. For I have a child with Autism, I look for more answers, I think outside the box and I never give up. Not because I am a saint, or superwoman, it’s just in the job description. If only Gigi could have told herself that, or had someone tell it to her. I am grateful for the very solid friendships that I am so blessed to have, which I know I had to work at keeping also. If you’re not a good friend, well you’re not going to have any good friends. Being a millionaire does not guaranty this either. This starts with the most important friendship we have, the one with ourselves.