So this post has been a long time in the making. It is often in my head and on the tip of my tongue. Forgive me if it seems harsh or negative; it is my reality and that of a lot of other parents.
**DISCLAIMER** I know most people just don't know what to say and aren't aware of how their comments and questions sound. And some parents aren't upset by these things. On a good day, neither am I, but there are lots of days when my heart is raw and some things really hurt. AND - If you are my friend, don't obsess, this is not directed at anyone I know, just the ignorant public we have encountered over the last six years.
Things Never to Say to a Parent of a Child With Special Needs
1. "Oh, I'm sorry." Why? I'm not and she's not. She is a joy to our family. Do I wish I could spare her the struggles that lie ahead? Certainly, but I wish that for all of my children. Hers are just a different set of trials and are more visible to you than those that others face.
2. "What's wrong with her?" Nothing is WRONG with my daughter. She is exactly as God planned or allowed her to be. She does have cerebral palsy and she is blind, but that is not WHO she is. Can you imagine how she feels when you ask this question?
3. "You must have it so hard." People, motherhood is not for wimps! Yes, I have a lot of extra balls to juggle, but caring for my child is not a hardship. It's physically, emotionally and mentally draining, at times, but I would never choose to be doing something else. If you honestly want to help, offer to babysit for a couple of hours or plan lunch or coffee for us. I might not be able to do it spur of the moment, but I'd certainly enjoy the time away and adult conversation that doesn't involve a bunch of acronyms and medical lingo.
4. "Is she (fill in the blank) yet?" There is no time table or milestone chart for my child. I'm acutely aware that your 2 year old has reached more developmental milestones than my six year old and that she may never reach many more. If she starts walking or some other really huge thing, you WILL hear about it. But please, don't be afraid to ask me how she's doing. I like to brag about her just like you love to talk about your kiddos.
5. "It's so cute how she tries to (fill in the blank)" Don't trivialize her monumental efforts to do the things you take for granted. I wish you knew how many hours she spends exercising her muscles and practicing fine and gross motor skills. She works out harder than most adults, every single day. Inspiring? Yes. Incredible effort? Yes. Cute? No.
6. "She looks so normal." "She doesn't look blind." What, exactly, does normal or blind look like? And why does it matter so much to so many people? This tells her, because yes, she can understand everything you say, that if for some reason, she doesn't look "normal", or she does "look blind", that this is a bad thing.
7. "It's nice she's so good-natured." It's mostly the unsaid finish to this statement that hurts (because there isn't much else going for her or something to that effect). Isn't it nice when ANY child is a joy to be around? She is good-natured, a lot of the time. But you are not in our home 24/7. She is not always easy to handle. She has her issues and we are working on them so that when you do see her, she is polite and well-mannered.
8. "You are saint."/"You must be so strong."/"I could never do what you do." A resounding NO is in order here. I am taking care of my child, just like you do what's best for your kids. It may involve lots of things that you don't have to do, but if she was your child, you would be doing the same things that I am because we all want the absolute best for our kids. Would a saint get frusterated and overwhelmed? I even occasionally yell at my kids and then beat myself up about it. Yes, I chose this child, knowing some of her challenges, but make me a saint it does not. I am a good mom, this I know, but I am no more extraordinary than you are and being told that I deserve a pedestal makes me truly uncomfortable.
9. Complain about your kids' typical develpment ("I wish she wasn't walking yet, she just gets into everything." or "I have to chase her around all day." or "I wish I could tape his mouth shut sometimes.") I would give anything to have those "problems" and I want you to know how lucky your child is that he can be that active and communicative. Please, tell me about your kids' accomplishments, I'm delighted for you and for him, but don't act like it's an inconvenience that they are developing so well.
10. "What's her name?"/"How old is she?"/"Does she like (fill in the blank)?" Ask her yourself. If she can't answer, or you don't understand her resonse, I will translate for you. But please treat her with the respect that you would any other child.
11. "Poor little girl." We are raising all of our children to be as independent and self-sufficienet as possible. Everyone has things to overcome and a pity party does absolutely nothing to help this process. You damage her self-esteem everytime she hears you say that. And even if you don't say it, if you have pity in your voice, she knows that, too. Please speak to her like you would any other child her age.
12. "Will she be able to learn?" This absolutely floors me. Learning happens every day of our life, if we allow it. It's incredible what she has learned already and there is no reason to expect it to suddenly stop. Will she learn everything you know? Probably not, but do you know everything that I know? Learning is an individual process.
