February 8, 2010 by Marj Hatzell
While I advocate heavily for my children (and NOTHING will stop this Momma Bear), I usually don’t get on my soapbox about much. I have my opinions, whether political, religious or other. I usually just politely stick to the weather and other mundane topics in polite company. But lately? I’m feeling a bit…riled up? Pissed off? Concerned? (Hormonal?) I am not sure. One thing IS for certain. I cannot stop thinking about a few stories in the news.
Some people think that things happen in threes. This week it has happened in fours and fives:
- A non-verbal child let on the bus. For hours. Alone. And all she could do was sit in her seat and cry.
- And eight-year-old autistic boy killed by his mother in an attempted murder-suicide. She lived. He never got the chance.
- An eight-year-old SEVERELY disabled girl dies. She weighed fifteen pounds. My kids were fifteen pounds at six weeks of age. You do the math.
- A so-called scientist and champion of the biomedical autistic movement tried and found guilty of medical malpractice. He literally used children as guinea pigs to try his treatments. While science-minded people rejoice, those searching for “cures” only push their agenda harder, vowing to do even MORE to “help” their children.
And this is just this week. I hear stories of special kids getting left on the bus more often than you’d like to know. Parents killing their disabled children? Becoming more and more prevalent. The excuse is always the same, too. That we don’t know how hard it is to raise disabled children. No one could possibly know how gut-wrenching and horrible it is and that they have no right to pass judgement.
I know. I know what it is like. I know how difficult it is. I know about the horrible moments, about sending your child into an MRI tube, drugged out of his mind. I know what it is like to take him for an EEG and watch him rip the glued leads from his head, taking hair and skin with it. I know what it is like to watch him have seizures. I know what it is like to watch him lose his words, withdraw into himself, vomit continuously from food allergies, struggle with potty training, have an inability to sleep, cry when the bus doesn’t show up because he doesn’t understand snow days, run into the street nekkid, because he doesn’t understand danger, panic when he darts off near a body of water for fear of drowning, never being able to leave him alone for a second (even when you go to the bathroom), cry when he doesn’t meet some of his developmental milestones and then sob when you realize that at the age of seven he has the functioning of a two-year-old in some areas. And fourteen months in the other areas.
But. I also know that there is no greater love than that of a parent for a child. I know that when they do THAT ONE THING that you’ve been waiting for, the whole world suddenly stops while you enjoy it. I know that even though he rarely allows you to touch him, once in a while he climbs into bed with you and hugs you tight, nearly choking you, but it’s still a hug. I know that the smile he has for you when he sees you after a long day at school. I know that when he does sleep, although it isn’t often (and it isn’t long), the peaceful look on his little face makes it all worth it and I just want to climb in with him and wrap my arms around him and kiss his hair.
See, I know the pain. But you have to push the pain aside and work through it and do what is best for your children, no matter what. It becomes about them. It’s all for them. It isn’t about you anymore. Isn’t that what parenting is all about? Guess what? Parenting a child with special needs is no different. People think that it is so hard for us, that we need pity. Not true. We just need respect. And we need a community that looks out for our special children, just like any other child.
The next time you see a child with special needs? Don’t stare. Don’t avert your gaze and refuse to look. Look at the mom, at the child. Make eye contact. Smile. Hold the door if they need it. Ask questions if you are curious (FOR THE LOVE OF PETE, DO NOT ASK WHAT IS WRONG WITH MY CHILD!). But most of all, just respect us. It isn’t hard to do.
Because respect will prevent things like the stuff up there from happening.
ETA: You need to go HERE right now. THIS. This is what it is all about, this wonderful Momma says it perfectly. Go rejoice with her!