Setting the record straight

My answers to common questions from well-meaning people who don't "get it":

1) Why don't you just accept your son the way he is and quit worrying? (This is usually in response to telling them about the DAN! protocol, which apparently seems too fussy or too hard):

Answer: I do accept my son the way he is; however, my son has an illness most doctors do not know yet how to treat. To the best of my knowledge, he didn't come into the world with it, and it's my job as his mother to help him ever-increase his well-being and his ability to adapt and live in this world as it is. Us mothers know when we are really worrying. But, what you may perceive as worrying, is just our forward-thinking minds anticipating what could be coming down the pike and to help our kids be ready. If we didn't do that, we would be negligent.

If you spent a lot of time in my world; that of IEPs and therapists and teachers and doctors and articles and the media, you would probaby "get" us mothers and why we do what we do.

2) To the probably not so well-meaning occupational therapist who brazenly announced to the entire waiting room that Liberty was crying because, "he basically has had everything done for him..."

Response (which is late in coming because at the time, my jaw could only drop in incredulity at the insensitive remark from the therapist with five neurotypical children at home):

The thing about my kid with autism is that, one week he might suck at fine motor skills and, therefore, I cannot spend 8 hours making my son pinch his tiny fingers around the top of his socks and pull them on his feet. I have things to do like pay bills, cook, change diapers, go to the grocery store, cook ahead GF/CF stuff, and work. That's just the way things are.

The next week, his skills might have changed, and even, perhaps, his listening skills, and he might be able to do some motor planning and actually pull his foot up towards his little fingers that are trying to hold the sock for him to stick his toe in...he might get that, but he might not be able to actually pull it on.

The next week, he might get it, but maybe he can only put his sock on halfway and then take it off and throw it across the room, about 300 times before I finally put the damned shoes on the feet and head out the door...to see you, by the way, the therapist WHO HAS MORE TIME THAN I DO AND AN ASSISTANT TO TEACH HIM HOW TO PUT HIS SOCKS ON!!

I mean, come on people, give me a break. I do it all, and I try and spend time and teach, and show and talk and demonstrate, and then show again....but don't tell me it's my fault because he has had everything done for him. That is total bullshit and the people who know me and see me in action and know my son know the truth. I try to help him to be as independent as possible. In our situation, I don't know how much understanding there is when we talk. He gets things more when you demonstrate, but having speech and understanding other's speech comes in handy when you are trying to TEACH a child how to do something. Attention span is extra nice, too.

Most therapists and teachers I have contact with know that I am more than willing to accept constructive criticism and am always open to ideas for improvement of what I can do for my son on a daily basis. I don't dig judgments from a "professional" who has no idea what she is talking about. Perhaps being smug makes her feel important.

3) What bedtime stories does he like?

Answer: I have never read my son a bedtime story because his attention span is so short, he cannot allow me to read and turn pages. He also likes to look at books by himself. The moment an adult shows up to help, he's not interested. Shocker, isn't it?

4) Don't you know that you have to take time for yourself before you can really be of help to anyone else?

Answer: Come live in my world and then say that to my face without bursting out laughing.

My version of "taking time" for myself is different from yours because I rarely get a break by myself. I rarely get to go out to dinner. Have not been to the movies in years. Forget "vacation," what's that?

School has been a blessing because I know my son is with people who understand what he needs for most of the day. But, I don't get to take a class or get my hair done or anything like that unless it's during school time and I don't have to work. I definitely don't get to go out of town and have never been away from my son all day or overnight. I've never even slept in since he was born. And even though I might have a babysitter for a short time, any longer and it gets difficult for the babysitter and for Liberty. Most of the time when people ask me, "Why is he crying?" I don't know. It's real simple, I just don't know most of the time what is really going on with him, but I am skilled at knowing what to do to redirect him. I make him sound like he is a behavior problem, but he is far from that. He is a delightful child. He just gets frustrated, like anyone in his situation would do, when he cannot communicate his needs.

Taking time for myself now means I pray. I do a nanosecond of yoga. I sometimes get to get out and walk a little. But, I pray a lot throughout the day and I meditate a lot and always ask for spiritual Guidance and to stay connected to Source, and I'm telling you, that is one "muscle" that has gotten a lot of exercise over the past few years and it helps a lot.

A Whole Big Lot.

I guess I needed to finally got that off my chest.