For starters I should probably say: I am thrilled with my kids’ teachers and their paras this year! Both my kids are having fantastic years. My frustrations have nothing to do with classroom teachers, Resource Room teachers, or paras. Tate and Sydney have the best!!
When the parents of a special needs child get “constructive criticism” from a community member or a school administrator, they have a decision to make. Do I try to explain things and risk having an explanation sound like I am making lame excuses? Should I nod my head and smile, ignoring the advice given? Should I write a scathing letter and tear it up before I actually send it? Should I write a letter that I have to tone down over and over so I can actually send it? Should I close myself in a bathroom for a while and shed a few tears, feeling sorry for myself and wondering if the world around me will ever understand? Should I seek out the mother of another special needs child who “gets it” so I can have a sympathetic ear for a few minutes? Should I write a blog post and use that as “therapy” for myself? Should I sigh a heavy sigh and just keep on plugging along? I’ve done all of these things at one time or another in the past few years. Today, I considered a letter, but knew it was either going to be the blog post or the tears. Here’s the blog post:
Sometimes I just want to scream, “How dare you!” “How dare you judge me, or my precious little girl! How dare you offer me advice or tell me how I could do things better. How dare you assume I COULD be doing things any better than I am. How dare you assume SHE could be doing any better! Try walking a mile in my shoes and then we can talk. Try walking a mile in HER shoes and try to manage as well as she does!”
I started my blog so I could share what it is like for Tate and Sydney to get through their day. I sometimes aim at the people who work with my kids so they can better understand where my kids are coming from, thus helping those who teach them to be better able to educate them. True, not everyone who works with my kids reads my blog. True, I have not invited everyone who works with my kids to read my blog. Although it is public, not everyone in our lives is aware of the blog, nor do I think so highly of myself that I think everyone would WANT to read my blog. I hope it is being shared in my community and by my friends, to raise awareness about autism, ADHD and the challenges these kids face. If it helps anyone at all to understand then I am happy.
When a parent of a child with special needs is struggling to get things done they need to be encouraged, not reprimanded. If you tell me Tate isn’t eating healthy enough, don’t you imagine I already know that? Don’t you imagine I have already spent many, many hours worrying about that and working on ways to fix that? Don’t you imagine I would do almost anything to fix that?
If you tell me Sydney is late to school, don’t you imagine there is a good reason? Don’t you know that I KNOW what time the bell rings and I KNOW she is having to use up two or three MORE minutes jumping through hoops and getting a pass to class? Don’t you imagine that EVERY morning we are RACING to beat the bell so I won’t have to say, “Honey, you are late so go into the office for a pass.”
Sydney is often late to school. I’d like to say “through no fault of her own” but I’m not sure that would be accurate. I also cannot say “through no faulty of MY own” either. She is late, partly because I dread waking her and going through the morning chaos, and partly because of all the unpredictability of the morning chaos. Her pills take thirty minutes to an hour to really benefit us much. (I’ve documented two typical mornings in blog posts on December 22 and April 28, 2012 if you are interested and haven’t seen them before.) I do the best I can. Sydney does the best she can and her brothers and sisters do the best they can. She really cannot help her hyperactivity or the energy or the lack of impulse control.
Wake her earlier you say? The earlier I give her meds to her, the earlier they wear off. By 8:30 PM when I am trying to get her in to bed, she is bouncing off the wall again, talking non-stop, getting out of bed over and over and unable to settle down easily. If I wake her earlier and start her day earlier then we pay earlier in the evening. Thus, putting her to bed earlier and waking her earlier is not really a good option for us. The school staff and her classmates already get the best of Sydney. Although, her classmates complain often about her they do not understand how much worse it could be. I often wonder if I sent her to school once with out her meds if they would come to appreciate her more. Not long after she gets home from school her medications begin to wear off and I deal with the “evening Sydney.”
Switch medications you say? We’ve tried several medications and the two she takes are the two that have worked the best and the longest for her. She likes being calm and she likes being able to think. She likes being able to have a calm, quiet conversation with me. She is pleasant and able to learn while on the medication. She fully understands that no one likes to be around the Sydney that is out of control. She CANNOT HELP IT!!! Exposure to alcohol in the womb robbed her brain of the ability to control impulses. There is nothing she can do about it. There is nothing I can do about it, except give her medication to help slow her down.
Some days Sydney is more than a few minutes late to school. On those mornings it is often because her eleven-year old brother with autism wet his bed the night before, thus adding a shower and the stripping of sheets to our morning. Or, perhaps I let him try to pour his own milk and that resulted in him having to change his clothes and be reassured over and over that it was “no big deal.” You see, almost any change in his morning routine is going to result in anxiety. Do you think YOU could get a kid to school on time if he was pacing and stimming? I won’t even ask him to get into the car unless he is calm and happy. I’m NOT going to ruin his day, his teacher’s day and his classmates’ day because he comes to school in “melt-down” mode.
Get HIM up earlier you say? Kids with autism often have erratic sleep patterns and Tate does NOT sleep very many hours a night. I allow him to sleep until the last possible minute if he is still asleep when I wake. Usually, though he is the first one up at our house. His teachers often think he appears sick or tired because he gets little sleep. Getting Tate and Sydney to school before the bell rings is always a goal but it is just not one I can afford to make my biggest priority. If you had walked a mile in my shoes you would be able to see that a child with special needs does not always appreciate our schedules and there are some things that are much more important than getting to school before the first bell rings.
I’m not looking for sympathy or pity. I am actually very happy and pleased, even content, with my lot. I only write to raise awareness. If you feel like offering some advice or giving some constructive criticism to a mother of a child with special needs, think again. Are you really close enough to her to offer that piece of advice? Do you really know what her day looks like? Why don’t you instead think of a way you can encourage that mom?