Autism Touches Every Aspect Of Your Life

Autism sucks. At times it contributes to immense suffering for both the person with autism and his/her family. Sometimes it just does. Period. End of story.

Frankly, I have it easy if you consider the many behaviors that encompass the entire spectrum of people with autism. There are those people who cannot speak. or toilet themselves or self-harm. My sons have none of these issues. We are fortunate.

But sometimes I get weary of the constant pushback.The whole I say “yes”, so he says “no”. The fifty pokes to my arm everyday. The constant giving of some of the deepest parts of myself and getting very little back in return. The feeling that I am doing too much, or not enough, and either way believing whatever it is I am doing; I am most definitely not getting it right. Sometimes it is downright discouraging feeling that your choices are limited, as is your pocketbook, in your ability to get your children the help that they need. And for those of us facing mental health issues along with autism the chances to obtain needed services decrease even more until the quagmire you are in looks a lot like quicksand and it feels that way too.

Yes, I know that my boys are teenagers and some of this is normal teenage behavior but often it feels like it is teenage behavior on steroids and the doses are getting larger by the minute.

Over the years, I have heard comments such as “This too will pass.” Will it? When? Or “You are building character.” Seriously? We have enough character in this house to write our own sitcom. We don’t need anymore. So now, after all those years of worrying about offending others; I no longer put up with those people who “give you the look” or make”kindly” suggestions on how you could improve your children’s behavior. To them I suggest: you are not fighting the daily battle so you have no say. Keep your thoughts to yourself. I don’t need them and neither does anyone else who is doing their best day in and day out.

Maybe someday things will get easier for our kids. There will be less bullying. There will be more services. Schools will do what is right and give kids what they need to reach their full potential instead of fighting parents every step of the way. But until that time, parents are here engaged in a daily battle for their kids rights and it is sometimes beyond exhausting.

So the next time you see a special needs family don’t judge. Just give them a smile or a kid word and know they are dealing with more than you will ever have to. Then go about your business thankful that your family is doing well.

 

 

 

Sadie

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Sometimes the poverty that exists in this country just blows me away but what blows me away even more is the politicians that have no regard for those less fortunate than they. I have come to believe that before any politician can actually take office they should be forced to live in the middle of any city with their families, they should have to survive on food stamps, and should life without health insurance. They would have to live in buildings that long ago should have been condemned, have to take their clothes to a public laundry mat, and have to rely on public transportation wherever they go. I suspect that most would be so far out of their element that they would die of fear. Hearing guns going off constantly and living in economic chaos will do that to you.

Meet Sadie. She was a product of the foster care system until she became an emancipated minor at 16 years of age. At that time she was pregnant with her first child.She had nothing when she was pushed out into the world and she still has nothing except a broken-down rental, no furniture except a worn-down worn-out mattress, and no stove. She was never cared for properly and because of this she doesn’t believe she is entitled to anything more than she has ever known. She doesn’t think she should be doing better because she has never known what “better” is. What she sees on her neighbors tv (she can’t afford one) is just a fairy tale and not attainable to “someone like her.”

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Sadie had another child by the time she was 18 years gold and things were going well until her husband died unexpectedly. Depression hit her hard and she couldn’t get the mental health support she needed. Currently there are 14.1 state mental health hospital beds per 100,000 people which is essentially at the same level as in 1850. ¬†Because of this breakdown her children went to live with their grandmother and her guilt is immense. She wants them back but knows that they are better off where they are so she puts them first before her own desires. I think our elected officials could use a little of Sadie’s “doing the right thing” towards others mentality.

Sadie met another man and once more she found herself pregnant. She couldn’t afford birth control and there was no Planned Parenthood available. Her baby died at birth in the hospital. She doesn’t know how or why and regrets that in her sorrow she did not demand answers but she wouldn’t have known what to ask anyway she tells me. When you are poor you have no power and you expect nothing.

She’s pregnant again and her boyfriend is in jail. Hopefully, he will be out to be at their child’s birth but Sadie isn’t sure. She didn’t have the money to post bail and so she waits hoping that the judge will see what she sees in her boyfriend…a caring human being with flaws.

Maybe if a politician or two were to live with Sadie for a month they might come to understand that when you aren’t born with a silver spoon, when you haven’t been to the best schools, when you haven’t had parents there to meet your needs, when you were forced into a foster system that often exploits rather than nurtures, when you aren’t tall and beautiful, and when you don’t have an IQ of 120 that life is just tougher. Period. ¬†Unfortunately, our rich representatives do not understand that they did nothing to deserve their good looks, their good parenting, the plentiful food they had on their table, and the comforts that their parents were able to provide for them. It was just dumb luck that they ended up living a life of privilege instead of a life of poverty. ¬†Most didn’t earn what they got… they were just lucky to be born into various combinations of advantages through nothing they did no their own. The lives they were given taught them to think in ways that many in poverty have never been exposed to nor could they conceive for themselves.

So before you let the politicians convince you that the poor are to blame for their circumstances I hope you will really contemplate where you would be in your life if you were Sadie. Then I hope you will go up to her, give her a hug, and help in anyway that you can…including holding our elected officials responsible for taking care of those less fortunate then them.

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Think Of Them

 

Sometimes I am just so disappointed in both B and myself on behalf of our children. Ideally, no child should be a child of divorce but our kids have even more compelling reasons than most not to have to their parents split up.

Our youngest three children are all adopted. Obviously adoption involves loss and children who have been adopted have already lost their first family. They already have certain holes in the hearts and as adoptive parents we do everything we can to try to patch them. But as hard as we try, for most adoptees, something is still missing. Some don’t examine these feelings or loss or abandonment until they are 20 30 or even 40 years old. Some, like my son Paul, live with this wound their entire lives. Always wondering who they are and who they come from. Always believing there was something “wrong” with them rather than something wrong with the situation they were born into. None of these kids deserve to have their family severed again. My heart aches for them should we divorce and the guilt is tremendous. I mean, we willingly and lovingly brought them into our “forever” family, as the adoption community refers to it. But we may not be forever to children who desperately need the stability of forever.

Both Andre and Paul have autism while Paul also has some mental health issues. In talking to their psychologist she says that divorce would devastate Paul and could take him to a place from which he cannot return. Who does that to a child? Who knowingly divorces knowing that this is a possibility? I don’t even know how to wrap my head around this and I don’t understand how B could either.

And Gracie is at the age where losing her family could impact her ability to sustain her own relationships. According to studies older children remain profoundly effected by vivid memories of suffering due to their parents divorce. They are concerned about the unreliability of relationships and fear of betrayal when they are older and divorce happens.

I know that there are good reasons for divorce and I know that not all kids suffer because of them. But I also know in a family like mine that divorce will be most likely be catastrophic because of the special issues that are involved. It seems so ridiculous and selfish to be talking divorce just because a marriage isn’t “perfect.” Nothing is perfect in this world and I hope our children don’t internalize it as this divorce is occurring because they are not perfect either. Although we would sit down with them and try to convey that it has nothing to do with them, I suspect that they will not buy into any easy platitudes.

So I sit here and hope with a heavy heart that things improve for us and for the sake of our children. For if we divorce they have the most to lose. They are the innocents.