If you are, you’ve probably already encountered the fabulous ideas there. You’ve probably also encountered just how very much time can be wasted on this fabulous resource. If you aren’t, you probably just haven’t figured out just what it’s all … 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
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?…
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.
Grief (Photo credit: Wikipedia)
My uncle died last week. He was 80, but it still came as a shock to everyone. I was not very close to him, but I was sad for my aunt, and for my cousin who has Down’s Syndrome. They would feel this loss most acutely.
I had decided to have The Boy attend school as usual, as he didn’t really know this uncle of mine, and missing school is a catastrophe. Better that I go with my parents, and arrange for Fantastic Babysitter to pick him up from kids club so that we wouldn’t have to worry about making it back in time. Mom and I sat in the family section off to the side, while Dad sat with his sister, who wanted and needed him by her side. I had a clear view of her and my cousin, and as the funeral went on, I witnessed her grief ebb and flow, and then I watched as my cousin just lost it. I’m not sure if this was the first time it really hit him how final this was, but he was inconsolable. And I watched my aunt abandon her own grief, with eyes only for her son. At one point, she switched spots with another son so that she could sit next to him, and hold him. He was instantly better, and the two of them were able to share their grief and their comfort in each other. It was sad, and yet beautiful.
My aunt has been a special needs parent for almost 50 years, and I realized that day what an inspiration she has been for me, since I have taken on that role. My dad’s brother turned to me at the end of the funeral and told me how proud he was of me, and how strong I was to raise my son on my own. All I could say was “Thank you,” and look to my mom, and my aunt. We Tough Cookies are not just born that way. We are inspired.
We decided to go to the grocery store at 12:30. “That’s 23 minutes, from now, OK?” I remind The Boy. A few minutes later, I get up to make the grocery list, and I hear the beginnings of a meltdown. I hear the frustration in his voice, and the elevated volume saying, “I can’t FIND it!” It turned out to be a sock, a very particular grey and blue sock, for which he could not find the mate. He had actually looked in the laundry basket of socks first, which is huge. Usually, he will visually scan a room and if it doesn’t jump up and say, “HERE I am!!” it is lost. Forever. Somebody took it. So we looked all over his room. We looked in the clean clothes basket. We looked in the basement. I told him it would turn up sooner or later, and sat down because it was obvious we would not be going to the store today. I was making a mental inventory of our groceries and trying to determine how not getting groceries today would affect our Monday… The Boy began to get very angry and started throwing things. After he tossed a blanket across the room (thankfully only a blanket), I walked over to him on the couch, and said “STOP IT.”
From here it could have gone two ways: I could have started shouting, making things worse, or I could have gone the other route to try to get him to calm down. Today (because I don’t always make the right choice), I made a split-second decision to get him to calm down. I got him down on the couch, and lay down on top of him, using my body weight to give him some sensory input. He was still yelling about not going to school tomorrow, me calling the police on him, him calling the police on me, and ended with, “Get off of me or I’m going to be bleeding!” But he was calmer. We sat up, and I pulled him into my lap. We talked about better ways to communicate his frustration, and I laid out the options for him: We could clean up his room together, and if we didn’t find it, I would buy him a new pair, or we could hope it turned up, and choose a different pair. He chose to clean up his room, and look in the basement again, which we did.
As we cleaned up his room, we threw every sock we found on his bed. When we were finished tidying up, I said, “OK, Now we’re going to play a game. We will each make as many sock matches as we can, and whoever has the most will get a candy bar when we go grocery shopping today.” We sorted socks, I taught him how to fold pairs together, and we each snatched socks from the pile. In the space of about 20 minutes, we had gone from potential meltdown to smiles and laughter as we played a game together. And he lost, and it was OK. He found a different pair of socks to wear (because we still didn’t find that darn sock that started all this), and it was OK.
If it had been 7am on a school day, when these types of things usually occur, I’m not sure I would have made the better choice. But I did today, and we are both better off for it.
The National Autism Association has a shop on their site that they call NAA’s Little Shop of Hope – The Big Red Safety Shop. They sell safety and advocacy items that are especially useful if your child is a wanderer. I particularly like the stickers, iron-ons, and temporary tattoos that have an emergency number to call if your child gets lost. I have experienced a few moments of panic at a mall when The Boy was younger, and more recently at his choir performance, where I just couldn’t find him for a few minutes. I would have had a bit more piece of mind if he had had something on him that had my phone number, for sure.
I also like the cards that you can pass along to someone who is not understanding your child’s public meltdown. I’ve never used these, but have lost count of the number of times I could have.
Please check it out, or pass it along to someone who might find these resources useful.
fire_alarm (Photo credit: auchard)
I bet moms with neurotypical kids don’t even know when they have had fire drills at school. I bet they don’t even think about fire drills often, if ever.
In our house, fire drills happening at school is huge news. We rarely know in advance, and yet hear about them for weeks afterwards.
The Boy’s school had a fire drill yesterday, and consequently, our Fun Friday consisted of going to another school in the district after kids club to look at their fire alarms in the gym. The Boy found that they did not have the proper coverings (the cage-like covers that protect them from balls and other flying objects in the gym), and wanted to go find the custodian to inform him of the fact that they needed to be covered properly. I suggested that I could email him rather than roaming through a school that is not ours to confront a custodian we don’t know about his naked alarms. Luckily, The Boy was OK with that. It was also lucky that The Boy is a bit of a celebrity in the district, and one of their kids club employees is the mom of one of our kids club employees, so that we were able to enter the school and let The Boy do his thing without anyone raising an eyebrow.
And so, for the next week or so, The Boy will be pointing out the different fire alarms he sees wherever we go, and comparing them to the catalog of fire alarms he has in his head, “Those are like the white ones at the middle school!” As I write this, he is having a pretend fire alarm at the pretend school where he is the pretend gym teacher. “Mmm. Mmm. Mmm,” I hear from the dining room.
Remember when I said I had a couple of big things to share with you?
Well, one of them is that we are moving house in June. It may not sound like that big of a deal – people move all the time, right? The Boy and I will be moving 900 miles away, which means new house, new state, new everything. And if you know anything about kids with autism, you know what a big deal this will be.
It also means a new job, and most likely a new career for me. After (wait, I have to count…) 16 and a half years of teaching in the public schools, I will be done. And that is also a big deal.
As you can imagine, there are so many emotions that we are both feeling… And this is why I am sharing this now. It will be a process, and more and more, when I am brainstorming my blog posts, I find it harder and harder to not include this huge piece of what’s in store for us.
These are my answers to the most common questions I hear:
Why are you moving?
We’re moving because life is too short to be miserable doing what you are doing, and life is also too short to be living far away from the people you love.
Won’t it be hard on The Boy?
Yes, it will. He has a great school here, and great people that love him, but change isn’t necessarily bad. He is leaving elementary school, anyway, and the good thing is that he will have two adults in his household now, as well as grandparents that are 10 minutes away, instead of 14 hours away.
What will you do for a living?
I’m not sure. I have a lot of experience and education that are applicable to other fields. I may teach community college, I can tutor and teach private lessons. The Man and I would also like to open our own business or start our own nonprofit (or both). We have lots of options.
Isn’t that kind of irresponsible? Leaving a good job with benefits and not having anything lined up?
Probably, but I’m not stupid. I’m a smart cookie and have done my research. I’m getting my ducks in a row, paying down debt and saving everything I can. We will not have a mortgage payment or rent, so we will have a roof over our heads. In my book, wasting your life living for the weekends is the irresponsible thing to do.
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Moving Truck Ramp – (Photo credit: revger)
So, it is with mixed emotions that I share this news. I grew up here, have great friends and colleagues here, and have watched my boy thrive here. But I am also very excited for what challenges the future holds, and excited to be somewhere where we both have daily support from the people we love.
I’ll keep you posted 🙂
Simple. I Just Do. 