It’s Just A Word

Posted on July 5, 2013 by simpleijustdo

Still using the “r-word”? Find yourself a dictionary…

Recently, the r-word has reared its ugly head again in my purview. Several weeks ago, I was on Pinterest, and saw a pin with this “joke”: “Sometimes your knight in shining armor is just a retard in tin foil”. Hilarious, right? No. Not funny in the least. And I usually don’t jump on people on that site, because I don’t know them from Adam, and don’t want to get into it with strangers. In my experience, that can get a little scary.

But I noticed that several others were posting comments to the pin that took exception to it, so I chimed in. And a couple of people responded to me, jumping all over me to “get a grip”, “life isn’t always nice”, “people are too damn touchy today”, “get over it”, “cool your beans” and plenty of expletives. Now let me explain that my comment was in no way heated — it was: “Just because it doesn’t hurt you, doesn’t mean it doesn’t hurt someone else.” But I was told to “cool (my) beans” and “get a grip”!

One person responded specifically to me, and in her response, said this: “If the word hurts you, it is because you allowed it to. I am overweight, if I cried every time I heard the word fat, I would be a constant mess.”

So, it’s OK for people to use derogatory language, because I’m supposed to be stronger, and those on this planet with Down’s Syndrome, Autism, Cognitive Impairments, and Intellectual and Developmental Disabilities are just supposed to be stronger, and “get over it”, if the word “retard” hurts them?

Another commenter said this: “Oh goodness it’s a word for crying out loud! I have a cousin with Down syndrome and a cousin with autism and not a single person in my family over reacts over the word ‘retard’ you know why, because we don’t use that word to describe them so why the hell should it be offensive, do you actually sit there and call your mentally disabled children retarded? No? Then get over it!!!”

So, because I don’t use that word to describe my son, it shouldn’t be offensive to me??

Um… What???

I think the people on the wrong side of this, those who accuse us of being the “word police”, need some stronger arguments, because theirs just make no sense. I am not the word police. But I will point out to you when a word you use is hurtful, because I believe people should be nice to each other – didn’t we all learn that in Kindergarten? Because I’m going to give you the benefit of the doubt, that you just didn’t realize you were being mean. If you dig your feet in, because you should be allowed to say whatever you want, you are correct.

You can say anything you want. But that doesn’t mean you should.

If you agree, check out this awesome info-graphic about the word “gay”. We should totally get one of these made for the r-word!

Impatience and Executive Functioning

Posted on June 27, 2013 by simpleijustdo

The Boy has been impatient lately. I don’t know if this is a new thing,or if this has coincided with puberty, but I’ve only recently begun to ~~be annoyed by it~~ notice it. Sometimes, when I wonder if something is a tween thing or an ASD thing, I go to Wrongplanet.net to see what they say. Wrongplanet is a discussion forum for those with autism and Asperger’s, and since they are the experts, it’s an excellent resource for those of us who can’t simply ask our own children on the spectrum WHAT IS UP WITH YOU??

Unknown watch by Allo002

Most of the respondents to “Is Impatience an AS trait?” thought that maybe yes, there could be a correlation. Some cited problems with executive function as a possible cause. That means those individuals on the spectrum who have issues with planning would have difficulty with vague estimations of time. For example, “When will we go to dinner?” and a vague response of “Soon” would agitate someone with executive function problems, which would look like impatience to we neurotypical types.

If I can remember to be as specific as possible when giving time estimations to The Boy, I think his “impatience” will be reduced. I know it won’t go away completely, because waiting can be very difficult for those on the spectrum. But specificity and help with planning for something that is anticipated can go a long way.

Lost in the Shuffle

Posted on June 26, 2013 by simpleijustdo

A lineup The Boy had me capture at camp

The Man and I are both feeling like The Boy is suffering from a lack of attention, lately. We’re trying to compensate, but if you think about it, we needed him rather out-of-the-way for the move and the unpacking, and now the wedding is upon us. The Boy has rolled with everything relatively well, although his summer day camp turned out to be more different than his previous ESY program than he thought was manageable — we’re still working on it. Upset by the startling lack of computers at the camp, he was mollified a bit by the introduction of his own netbook at home on which he can make PowerPoints.

And of course, Grammy and Poppy have been amazingly accommodating, letting The Boy hang out at their place, and keeping an eye on him while I run errands as we get the house unpacked and ready for guests this weekend.

But both The Man and I feel as if we’ve made some promises on which we haven’t yet followed through, and we’re feeling a little guilty. We talked about a new bike when we donated his old one (which was way too small), as well as a new boogie board, and a new “wrestling” mat. He’s even supposed to get a new Captain-style bed, which The Man will make for him (The Boy likes to call it a “Hidey-hole” bed, because it will have a hiding space underneath), but it hasn’t happened yet.

We try to put it in perspective, and he hasn’t been complaining, but… Those nagging feelings of guilt. The Man and I are both people to whom a promise is no small thing, and we will follow through. In the meantime, we have to make sure to spend time with him (even when he just wants to hole up in room with an electronic device). Luckily, he’s been a great sport, and luckily spending time with him is something we can definitely do right now.

Moving House: The Boy

Posted on June 20, 2013 by simpleijustdo

You are probably wondering how The Boy has done, seeing as autism and any kind of change don’t generally mix well, and moving house is a change in a league all of its own. The short answer is that he has done amazingly well!

Here’s what I think helped:

Grammy and Poppy were there to help ease the transition. The Boy loves his grandparents, and they are a constant in his life. Having them come up to help with the move helped remind him of what he had to look forward to — more time with his grandparents! They are also a little less threatening than Mom, so Grammy helped him pack up his room, which calmed his fears that we were getting rid of all of his stuff!

Preparation. We’ve been prepping the Boy for almost a year, first introducing it as an idea, and then gradually replacing the “Wouldn’t it be cool if…?” with “Won’t it be fun when we…?” We addressed each of his fears as they came up, and made sure not to make light of them. We also spent a lot of time focusing on the positives.

The Moving Book. Anytime I heard him start to fret about the move, I made sure to pull out the moving book (or at least made a point to remember to do that at a quiet part of the day). It really did seem to calm his fears, I think because it worked as a visual cue to address his fears and remind him of the positives, and visual cues really work.

Addressing his biggest fear ASAP. One of The Boy’s biggest concerns was missing his ESY program. As quickly as I could, I found a similar program in our new state. Because of the timing of our move, I didn’t think I’d be able to get him into one provided by his school district, and truth be told, finding one that was going to be the right fit was a bit of a challenge. But in a totally coincidental way, we (I say we because Grammy helped a bunch on this front) found a summer day camp for kids with autism and their siblings in our new area that was relatively affordable and got him enrolled ASAP so that he would have a replacement for the program he cared so much about. He went from whimpering about missing ESY to being excited about Camp SMILE. And because he attends daily, it is a new and immediate routine, and provides him with an opportunity to make new friends (one of his other biggest concerns).

His room is still full of boxes, as most of them are, and he’s been wearing his new Spongebob hoodie just about everyday (he tends toward clothing exclusivity when stressed), but he really has made an excellent transition, and I am so proud and happy for him.

The Moving Book

Posted on June 10, 2013 by simpleijustdo

Tonight, The Boy turned to me and said, “Why do we have to move?”

It just about breaks my heart, because I know on the inside, he is still adjusting to this very big change I have foisted upon him, although on the outside he has been a trooper. And even though we have talked, and talked, and talked about this for a long, long time, I know it is still hard for him to understand.

A long while ago, I came across the suggestion to make a book about the moving process so that The Boy could have a resource to refer to when he was feeling anxious or unsure. My lovely mother helped me flesh out the idea, and even did some of the legwork for me, taking pictures of his favorite places in our new area to include in the book.

My goal with the book was to acknowledge his fear, but accentuate the positive. Tell him what exactly will change, and what will not. Include pictures of familiar things in our new home and community, and pictures of good times with The Man, and with his grandparents.

I’ve been working on his book for awhile, and I shared it with him tonight, hearing his anxiety once again in his honest question. We read through each page, and he looked at the pictures. When we were finished, he was at least smiling. I asked if he felt better and he said he did.

If you’re going through a move with an autistic child, I highly recommend the National Au tism Society (UK)’s page, and a couple of other resources listed below. You can never begin preparing your child too soon, and creating a moving book is one strategy to help calm those moving anxieties that I think will be so helpful!

Tips for Making a Move More Successful – Different Roads

Tips for Moving with an Autistic Child – Elsia R. Sebastian, Yahoo

Why I Love Field Day

Posted on June 7, 2013 by simpleijustdo

Most teachers aren’t very fond of field day. In fact, in my district it was even the source of a fierce battle about prep time awhile back. But I love it. At least I love it when my kid has it.

His field day was last week. I think he even chose a special “athletic-themed” outfit for that day, choosing to wear his T-shirt from the special needs baseball camp he has been to the past two summers. It doesn’t hurt that he loves his gym teacher, and wants to be one when he grows up.

His school gives each kid a long ticket-type thing that lists the various activities, that get punched as they visit the stations, and they can also be recognized on the ticket for showing good sportsmanship (or having an “oops!” moment, but The Boy has never earned an “oops!” he is proud to tell me).

Here’s why I love it so much: I often have no clue about what happens at school, because he just chooses not to tell me (thank goodness his ASD teacher sends home a daily communication log to let me know about highlights, or I’d be completely in the dark!). But on field day, we have a nice long conversation. When I pick The Boy up from Kids Club, and with the ticket in hand, I ask him about each one with a punch next to it. I ask him to explain how it works, and whether or not he liked it (he always likes them all). And he does tell me — at length! I have a guide that tells me what to ask him about his day, and I do, and he responds. That’s a big thing for us. And I enjoy it a great deal.

A Solo Venture

Posted on June 6, 2013 by simpleijustdo

The Boy has been anxiously awaiting the opening of the pool at the big park near us, and it finally opened Memorial Day weekend. Except it was cold that weekend. And then we’ve had lots and lots of rain. So he’s been a bit focused about being able to go to the pool. I suggested we do it last week for Fun Friday, and he was all for it. And then it rained, again.

I told him we could go the next morning, so we did. We stepped outside and realized it was not altogether warm, mainly due to the wind, and there were some gray clouds looming, but I couldn’t put him off any longer.

We arrived, paid our admission, and went to get a locker and put on sunscreen. We emerged to the pool area to realize that we were the only ones there, and were rousting the teenage lifeguards from huddling in their sweats in the “office”…

I set the timer, and he gadded about, going down the slide, jumping off the diving board, all while five lifeguards looked on. And I felt kind of bad for them, and then I stopped – they were getting paid, so they could sit and watch my kid for awhile!

After a good half hour, a few more people straggled in, and then a few more. By the time we left there were maybe 11 people in the pool, but it was all good. It was warm when the sun came out from behind the clouds, The Boy had a great time, and had no problem leaving when it was time to go, except to say, “Maybe we can come when it’s warmer next time…”

🙂

Why I Chose to Date as a Single Mom

Posted on June 3, 2013 by simpleijustdo

“Don’t let your struggle be your identity.”

Yes, I actively pursued dating after divorce, as a single mom, as a special needs parent. Yes, I did. Some moms in similar situation choose not to, choosing instead to, “wait until their children are grown,” or maybe even give up the idea of ever being with someone again. “The kids come first,” they often say. And I don’t disagree. Not every child, nor even every special needs child is like mine. Some have more intense needs, and I am not judging anyone who has made this decision for themselves, because I can’t know your personal situation – only you do.

I love being a mom, and that is an integral part of my identity. I would never give it up, I would never trade that for anything in the world. But it isn’t all of me. I am much more complex. I have my own desires, needs, dreams, foibles, interests, and personality quirks. I have my own life. Being a mom to a special needs child is part of it, but it isn’t it.

We only have one life. I want to live with as little regret as possible, which means doing the best I can, while stretching my personal limits a bit, growing, and learning all the time. Having a non-existent social life would be a huge source of regret for me.

Also, I want my child to understand that I was put on this planet to be his mom, but also to be a lot of other things, just as he was put on this planet to be my son, and also a lot of other things. He has autism, but he has a lot of other really cool stuff that make up his identity.

“Don’t let your struggle be your identity.”

That is what I wish for him, and I hope I am modeling that for him by living my life to the fullest.

PS ~ I couldn’t find an attribution for the quote – if anyone knows, please mention in the comments!

You Are Not a Failure

Posted on June 1, 2013 by simpleijustdo

A mom posted on Single mothers who have children with autism’s facebook page about feeling like a failure because her son was being pulled from mainstreamed classes, and placed into a special education classroom. My heart breaks when I read things like that.

I think every Special Needs Parent has those moments, hours, days, weeks, or even years, when we feel like we are the biggest failures on the planet, and we feel that pain so much more deeply because we know how much our kids need us not to fail. But. We can not allow ourselves to feel that way for too long, for that very same reason – our kids need us to pick ourselves up and keep rolling that rock up the mountain. It’s OK to fall, to stumble, to crawl into bed and lock the door once in awhile (assuming everyone else is relatively safe). But we can’t stay there, and we definitely can’t get into the habit of pointing fingers at ourselves too often.

Maybe it would help to remember those naysayers we have all encountered. The ignorant, mean-spirited people we have come across. And then in our weakest moments, imagine what kind of a job they would do in our place. You see, no one is perfect, and none of us were prepared for this job. And there was certainly no manual. But we are some of the quickest studies on the planet. We can read our children’s faces down to the slightest waggle of an eyebrow, and be able to interpret emotion from it. We can come up with backup plans on the fly, salvage nasty situations, and calm our children when no one else can. In the eyes of our children, we are MOM (or DAD), the one and only. Learning from mistakes is part of the game. It’s not learning from them that is a failure.

Be nice to yourself, parents. Try not to beat yourself up too bad. It’s a waste of energy, and you’ve got too much other stuff to do!

8 Reasons Why The Boy May Be a Time Lord…

Posted on May 26, 2013 by simpleijustdo

Doctor Who fans are a fiercely loyal bunch, and I can proudly say that I was recently initiated via Netflix. Now, I’m sure there are various strata of Doctor Who fan-dom, and if there are, I am probably in the lowest of the low, because I have not watched all the old-old episodes, with Doctors 1-8, and have not even watched any episodes with the most recent Doctor Who, because I am fiercely loyal to (and have an equally fierce crush on) Doctor number 10. But. There are enough similarities between Doctors (I mean they are all supposed to be the same Time Lord, after all), that I think I can make some generalizations, and bring your attention to the fact that The Boy may actually be Doctor Who…

1. He has an affinity for wearing the same outfit everyday, because he thinks it’s the coolest thing on the planet. Or on several planets.

The Tenth Doctor’s Outfit – Keith Schengili-Roberts

2. He also has an affinity for Chuck Taylor’s.

3. He has a wee obsession with clocks and timers – What Time Lord wouldn’t?

4. He tends to use common objects in uncommon ways… like a Sonic Screwdriver, perhaps?

5. He is whip smart, figures stuff out on his own, and loves technology. He could probably fly a TARDIS meant to be piloted by six Time Lords with one hand tied behind his back…