Here’s what’s on our plate: ARC Bowling Party Haircut for The Boy Going to The Boy’s favorite restaurant for dinner A Choir performance for The Boy Cleaning up the House Groceries Oops. I forgot one: Sleep How about you? What … Continue reading
Without realizing it, I have slipped into a funk. I love to cook, and haven’t had the energy, I’ve been sleeping more, and still feeling exhausted, I’ve been letting the housework go (and go, and go), and I haven’t as … Continue reading
Dear ex,
Our son was diagnosed almost 6 years ago with autism – do you remember? Autism is a neurological disorder characterized by repetitive behaviors and poor social skills. Our son, in particular, has a great deal of anxiety about time (being on time, being first to school, timers, etc.). He also does not always respond when spoken to, gets easily flustered by changes in his schedule, and sometimes needs a great deal of sensory stimulation. Autism does not “go away”, and there is no cure. Just because you have not seen him have a meltdown in a long while, does not mean that he has not had a meltdown in a long while. Remember, please, that you live three states away, and have only seen him for one week out of the last 52.
I understand that driving so far to pick him up for your irregular visitation time is a bother. I realize that you think you have plenty of better ways of spending your time, and that having an independent son who could fly by himself on an airplane would be very helpful to you.
Unfortunately, your son is not independent enough to fly by himself on an airplane, and may never be.
Can I ask you to take a moment just to think about what you are proposing? Think about all of the things that happen when a neurotypical person like yourself has ever flown a plane. They may include
And that list is what happens when there are no flight delays or cancellations, no problems whatsoever.
Now imagine your son who has autism, attempting that by himself.
I realize that with children, much of this is ameliorated by staff members who do much to aid the child through the process. But The Boy is not a typical child, and I very much doubt that any staff person they would assign to him would have any insight into his disorder or possible outcomes stemming from it. And if we are trying to predict when The Boy would be independent enough to do all of this, it could well be after he reaches an age where the airlines are willing to assist him like that.
So, in short, it’s not going to happen any time soon. And I have a sneaking suspicion this is all moot anyway, because you would have to pay for the plane ticket, and that’s not bloody likely either.
I know Amazon is a huge company, and I still maintain my love for mom & pop stores, especially bookstores. (In fact, dwell.com has put together a map of the best Independent Bookstores across America, if you are interested.) And, … Continue reading
Words (Photo credit: sirwiseowl)
I wasn’t going to write about it, but I need to. I’m not even going to put her name in this post, because she doesn’t deserve the attention, nor the notoriety. She went there, she has used the r-word plenty of times, and refuses to apologize, because it’s a “colloquialism” that means “loser”.
Well. Of course, any rational being with an ounce of humanity would not call a person with an intellectual or developmental disability that word.
THAT IS NOT THE POINT. THE POINT IS that that woman continues to give that word that meaning, by continuing to use it the way she does. It would be like someone deciding that your name now means “jackhole”, and using it that way all the time. Not to your face, of course, but as much as possible, and with everyone they know. So now, your name is synonymous with the word “jackhole”. But those people using your name like that? They don’t mean to offend you, and they have a right to say it, because they have a right to free speech in this country. How would that feel, woman?
THE POINT IS that if you do something, and it hurts someone, and they say to you, nicely, “Hey, could you stop doing that? It hurts me,” any rational being with an ounce of humanity will say, “Oh my gosh, I’m so sorry. I didn’t mean to hurt you!”
But she didn’t say that. She said somethig along the lines of “Nah nah nah boo-boo, stick your face in doo doo,” because that’s the classy kind of gal she is.
Ergo, that woman that said that word is not a rational being, and is without an ounce of humanity. Do I hear a new slang term coming on?…
At least, that’s one theory about what’s going on (or not going on, as the case may be).
I texted the ex: “We need to talk about Christmas so that we are on the same page”. He responded, “Sounds good. I will call Friday night around 7 if that’s ok”. I replied, “We’re going to the movies for Fun Friday… How about 8?” His response, “That will work. Talk to ya then.”
Sounds like a pretty cordial conversation, right? The most cordial we’ve had all year, in fact. The outcome? No call around 8pm. In fact, he didn’t call until over an hour later, and I didn’t answer. I was already on the phone, and even if I wasn’t, I wouldn’t have responded. Am I playing games? No. I am showing him that my time is valuable, and when we make an agreement, he needs to stick to it. Just like if I let him swear at me, and continue talking to him, that communicates to him that it’s OK to swear at me. If I answer the phone when he calls an hour late, that communicates to him that it’s just fine for him to do that, and it’s not. I’m not trying to control his behavior, but I am trying to get him to be respectful in his dealings with me.
He left a voicemail saying, “Sorry for not calling right at 8, I got busy. I’ll try giving you another call tomorrow.”
He never called back. We’ll keep trying, I suppose.
Ellen Seidman’s blog, Love That Max combines wonderful stories about life with her son, Max, who has cerebral palsy, and large doses of advocacy. She tells stories that special needs moms can relate to, not being able to have a normal out-to-dinner experience, rejoicing when Max has an opportunity to work at a car wash, and she writes about the r-word. She has become such a cogent voice for us on that issue that she has been interviewed by major news outlets about it, and she never fails to articulate our feelings clearly. She’s one of my heroes on that score alone.
Right now on her blog, and on twitter she’s telling the world about groups that are helping families with special needs children in the wake of Sandy, and how we can help.
If you haven’t already, go read Love That Max (and follow her on twitter @LoveThatMax). You’ll see how amazing Ellen and Max both are.
I went to the doctor today and had the requisite “weigh-in”, and I’m about 15 pounds over my normal weight. That’s what I get for not owning a scale, I guess. And so I started mulling over this whole increased-cellulite/Holy-crap-I-haven’t-been-this-heavy-since-right-nefore-my-divorce/hate-to-workout … Continue reading
The Man is a special guy, and he’s mine, all mine. Here’s why I’m lucky. The Man is kind. He will help out the bartenders at his favorite restaurant when they are understaffed. He pulled over once, after we witnessed … Continue reading
Can you believe it’s November? Here are some of the top posts from October you may have missed: One of the Toughest Things The irony of autism is its unpredictability, when the person with autism craves predictability… Birthdays Past and … Continue reading
Simple. I Just Do. 