Dear World

Here’s the deal – if you’ve never had a special needs child, do not tell us how to manage ours. Telling us to spank our kids when they’re “bad” is ridiculous. Telling us “Oh I know! My two year old does that.” isn’t helpful. Because your two year old? Will grow out of that behavior. My kid may not.

If you work with special needs kids, input given nicely is welcomed. Blind interference is not. Do not come up to me while my child is having a fit and try to help when you’ve never met us. I’m actually quite capable of handling my child, I have loads of practice. You have no clue what you’re stepping into and actually just making the situation worse.

If you have a special needs child, then you should be more sensitive to each individual situation. Do not judge my child by your situation. I don’t judge yours by ours. Because they are different. Also, this is not a competition. If you want to compete, I’ll let you win. Because I don’t want to win the “Who has it worse?” game.

To other parents – teach your children how to be kind to those who are different. This may mean you have to change your attitude towards my child. Because if you see my child as a little weird, your children will pick up on that and imitate that.

To teachers and principals – keep us special ed parents in the loop. Some of us have children who can’t tell us what happened in school. I should not have to find out about the bullying going on from my older child. It breaks my heart that children who can’t defend themselves are being picked on, especially after having my older child sign all these “anti-bullying” pacts and sit through “anti-bullying” rallies. My ten year old should not have to hear from friends how her little sister is being called a baby by other students. It not only hurt her feelings, but made her angry. And I couldn’t tell her “Oh, don’t worry, they’re taking care of it at school. It won’t happen again.” Because it did happen again. Right in front of me. And it’s happening to other students. And it just makes me both angry and sad. I was a child who was bullied, but at least I could defend myself. My child doesn’t have that ability, and her sister shouldn’t have to step in for her.

Dear government – if you force us to mainstream our moderately disabled children, then for God’s sake, give more funding to the schools who have to deal with them. Because many schools are not prepared for moderately disabled kids. They have to hire extra staff, get items that are not readily available in the school, sometimes build additions. You insisted on making Least Restrictive Environment a law, local districts shouldn’t have to pay the price for your decision. You should. Local districts shouldn’t have to choose between cutting something like art or shortchanging the special ed kids.

To all the teachers, aides, and therapists – Having a special needs child makes you a little insane. It might be the lack of sleep, the stress, the worry, or our child’s current repetitive behavior. We’re just trying to do what’s best for our child, and many times we hear “You have to fight! They’re the enemy! You have to be a warrior!” And we buy into it. Thank you for putting up with us when we’re crazy. And I say this as one who has admitted to turning into “That Parent” at one point. What you don’t always see is how when we’re in the privacy of our own homes, how we may burst into tears because we just don’t know what’s going to happen to our child. That we’re somehow failing our child. And we’re embarrassed when we are caught in our weak moments. We don’t mean to be crazy – it just ends up that way.

Dear Doctors and medical staff – please understand that we may be crazy at times, but we’re also the expert on our child. All we ask is that we’re taken seriously, or at least at face value. Do not brush us off. You have no clue what we sacrifice to afford to see you. And in an emergency room situation, for God’s sake, listen to us when we say “My child doesn’t understand.” That’s not some secret code for “Please, talk to my child like they’re a competent 24 year old.” It means “My child does not understand and is going to freak the shit out on you when you start poking them with needles.” And if I tell you “My child’s going to freak the shit out when you pull out the needles and flail a lot” – don’t think I’m exaggerating. Get that extra person to help hold them down.

And for the Love of All that is Holy – do NOT criticize us for not holding our child down well enough. It is mentally painful for us parents to have to hold that child down when we know they’re going to be caused pain. Our child will look at us and wonder why we’re letting you cause them pain and not understand. Sorry if I’m not perfect at it. That’s really your job.

And to the teachers, therapists and school staff who have gone the extra mile for us, the store clerks who have dealt with us with patience and a smile, the other parents who have commiserated with us, listened to us, invited our child over to play, the doctors who have listened to us, the children who have treated our child as a friend, to those with a kind word or smile – thank you isn’t enough. We are grateful for every kindness, every effort, every time our child and family is treated as normal and feel blessed to have people like you in our lives.

Love,

the crazy lady with the special needs kid

(this is another older blog entry from another blog I wrote – I was thinking about some of this lately, and thought I’d repost it here.)

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