So today's recipe is for some special needs truth. This is a bit of a spin off over a conversation that I had recently. I can't remember if it was on facebook, or someplace else. But the discussion was about some of the hurtful things that are said to a special needs parent. Sometimes they are meant to hurt (thankfully, that rarely happens), and other times, it is masked with the intention that they are simply trying to offer advice. So I thought I would lay down some truth. This is my truth. It applies to my children. There are many of lists of things you should know about being a special needs parent. But this one is mine.
1. Being a special needs parent does not make me awesome. I have heard it from many people that I'm a great mom because ____. Fill in the blank. Know that I struggle. It's hard work. I don't always do things right. I make parenting mistakes.
I am awesome, but not because I'm a special needs parent. I'm just awesome in general.
2. I'm worried. I worry about what will happen to my children. Yes, I know that you worry too. Every parent worries about their child. But here is the difference. A typically developed child has options that a special needs child may not have. I worry about the type of job my children will have. I worry if they will be independent enough to live on their own. I worry that they will live in poverty as adults, dependent on public assistance for the rest of their lives. I worry what will happen to them when Alex and I are gone. Will they have people in their lives that love and care about them?
3. I do not have a magic wand to cure them. Yes, I know that you have a friend of a friend of a friend, whose neighbor has a son with autism. And that kid went to college and now runs the most super awesome company known to mankind. But not every person with autism can do that. Some can go to college. Some can't. Some may never be able to tie their own shoes. This isn't a contest. The fact that Temple Grandin could accomplish so much, does not mean that her mom was more awesome than any other parent of a child with autism. So please stop comparing us.
4. I have high hopes for my kids, but prepare for the worst case scenario. I have visions of my boys going to a trade school, and getting jobs as plumbers, electricians, home appliance repairmen. Those are solid jobs that cannot be outsourced. They would be able to make enough money to live on their own, have medical insurance, and could even afford to travel. That is my dream for them. But I also recognize that I don't know what will happen. So I must prepare for the what if.
5. And while I'm at it, the fact that I recognize my sons limitations, does not mean that I have given up on them. It simply means that I recognize their strengths and weakness. We all have them. Just like you know that your child is better at art than math, I know that my child has an amazing memory, but not so good at navigating a class without support?
6.Sometimes, I am angry. Not at my life. I love my life. I couldn't ask for a better husband or children. But I am angry over some of the painful things that have been said in the past. And this probably makes me defensive at some of your well meaning comments. Know that special needs parents are given unwanted advice more times than we care to mention. Just understand that we know what is best for our children.
7. This is the awesome house. Not a day goes by, where I don't thank God for my sons. We laugh more than we cry. We are happy more than we are sad. We are hopeful for a bright future, more than mourning for what could have been. We are awesome.
Now does anyone have a good apple cake recipe?
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