Tag Archives: autism

The Blame Game

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Uncle_Sam_(pointing_finger)Apparently, being a tween with autism means everything is your mom’s fault.  No really.  I think it’s a thing.  That’s what someone told me.  And in our house, it is certainly bearing true.

This week it all started with my gleeful purging of the broken, un-played with junk in The Boy’s room.  You see, a little voice told me to either take the trash bags out of the house, or at the very least, tie them up.  But no, I don’t need to listen to no stinkin’ little voices…  And The Boy promptly raged at me when he figured out I had thrown away some unopened McDonald’s toys from like, eight years ago.  So much for my glee.  Everything was my fault.  I am the meanest mom ever.  He wants to move away and not live with me anymore.

He was angry, and I could understand it.  But I had reason on my side (fat lot of good that does you when you are arguing with someone on the spectrum).  I ended up having to sacrifice three McD’s toys from my plunder, and all was well.

Until today when I picked him up from kids club after school.  And he was missing another salvaged dollar store toy, a fake blackberry.  And it was all my FAULT.  I LOST IT.  I am so mean. Why would I throw out his TOY??  Except he had salvaged it and brought it to school, so it clearly wasn’t my fault that it was missing again.  There I go with the logic again…

Wouldn’t get into the car.  Wouldn’t get out of the car when we got home. Raged some more about how awful I am.

But I don’t just sit there and take it.  He loses screen time if he can’t be respectful with me.  Therefore he lost screen time both days.  Once he was able to calm down, I thought of some chore he could do to earn it back, and again all was well.  Until something else will be ALL MY FAULT again.

Sigh.

I hope everything won’t be my fault forever.

Single Moms to Special Needs Kids

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I read a sad Facebook post on the Single Mothers who have Children with Autism Facebook page, that started, “YOU MIGHT BE A SINGLE PARENT OF A CHILD WITH AUTISM IF…” and listed 25 (25!!?) ways to identify yourself in that category, many having to do with the inability to even think about dating. I know this post was meant to be tongue-in-cheek, but to me it seemed rather sad. And I guess it had to do with the repetition on the theme (and the assumption) that there is no hope for you in the dating world if you have a child with autism, and aren’t you better off anyway, being alone?

Does every single mom to a child with autism end up with a great guy? Heck no. I know how incredibly lucky I am.

But.

I’m happy today because I stuck my neck out there and risked it all. I’m happy today because I decided I wasn’t going to be lonely for the rest of my life. Yes, you read that right, I DECIDED. I’m happy today because I valued myself as a person, no less than my son.

…

After my divorce, I was told, point blank, that no man would ever date me if they found out my son had autism. And I half-believed it. I joined the online dating scene, landed a semi-regular guy to see, and it was over in about a month. I was devastated until my gynecologist (Yep, you read that right, too!) asked, “Did you love him?” and I said, “Uh… No.” “Then you’re free!” he said, and it clicked. He was so not right for me, and I was not really myself for that month (although it was so nice to be back in the swing of things again!). I learned a lot.

Then I dated “Bachelor #2”. That’s actually what I called him, although not to his face. That lasted two, count ’em TWO dates. You can read all about it here.

And then I gave up. I started to believe I would never find a partner and would only be lucky to date a guy here and there. So I quit. I quit the online dating scene, and didn’t pursue much of anything for a long time.

But.

I had already known The Man a few years. We came into contact a couple months later. And then we hung out again a couple months later. And then again a couple months later, and every freakin’ time I walked away with a huge crush, and a long list of reasons why it wouldn’t work. And a few months later, inspired by a blog post (I’d link it, but I can’t remember which exact one it was…), and Fidelity by Regina Spektor, I decided that I wasn’t going to settle, and I was going to take a risk with my heart, if a risk was made available. And it was.

And here I am. Single Mother who has Child with Autism and a Partner (fiancé!).

I’m certainly not writing about this to brag, and this hasn’t been all rainbows and lollipops, not by a long shot. But it was definitely worth sticking my neck out for. And because I am happier, we are all happier. Much, much happier.

And I know how tough it is to make arrangements to just get out of the house. I KNOW. Listen! I don’t even have family in the area! I am lucky enough to be able to afford a babysitter, but even if I couldn’t, I’d hook myself up with a friend and swap time, or apply for respite from one of the many great nonprofits out there that provide it.

Single Mothers who have Children with Autism, you and your happiness are worth the time, effort, and risk.

“Whether you think you can or whether you think you can’t, you’re right.” ~ Henry Ford

We’re Trying an Old Idea for a Slightly New Reason

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This is not a new idea.  Parents of NT (neuro-typical) kids have used these for eons to get their kids to be organized and to help them get ready more efficiently in the morning.  But I’m using it for slightly different reasons…

“What is it, already??” you are asking… It is the 6 Shelf Sweater Sorter:

kinda hard to see, I know - bad lighting in The Boy's room

kinda hard to see, I know – bad lighting in The Boy’s room

Ta-Da!

Yes, yes.  Organization, check.  Efficient Use of Time, check.  Not wearing the same clothes everyday, wha..??

My child has a signature outfit – he wears it every opportunity he can (which is sometimes several days in a row).  He has a thing with clothes.  The summer between splitting up and the official divorce, The Boy wore the same lime green T-shirt every single day.  Lots of tiny little loads of wash for me.

How does he get away with wearing the same thing several days in a row?  He wears a different hoodie, zips it all the way up, and waits to appear until we have to walk out the door.  And there are times when I do not fight it, even when I should.  To help me enforce the social code of not-wearing-the-same-outfit-every-single-day, I enlisted the help of the 6 Shelf Sweater Sorter.  Each shelf is a place for an outfit for each day of the week, except for Sunday, because we often spend one entire day of the weekend in our jammies anyway.  Tonight, we placed an entire week’s worth of outfits (including socks, underwear, and hoodies) into the sorter, and I’m hoping that The Boy will follow the implied and implicit rules of the Sorter, that he will wear what is in the space for that designated day, and he will not change his mind and scrounge things off the floor to wear.

If this fails, I will have to go to Old Navy and buy 6 more of every piece in his signature outfit.

I really hope this works…

Facebook Groups You Should Be Following

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If you are a Facebook user, you may have already seen something about these groups.  If not, you may want to add them to your feed.

Everyone Matters, according to their page, is a “global Inclusiveness campaign w Sir Paul McCartney, Nicole Kidman, Ellen D., Hugh Jackman, orgs & public with a message to judge others less, see the humanity in everyone, and emphasize that everyone has the right to be who they are.”  They highlight real stories from real people from all walks of life, as well as the usual graphics and pictures.  I often “share” what they post, so that I, too, can spread a message of inclusiveness for everyone. (@everyonematters on twitter)

EM fb page

Autism Shines, according to their page, allows you to “upload your photo of someone you love with autism, or yourself, and caption it with something great about them. Help us show the world all the positive attributes of autism!”  At first, I found the constant updates to my feed a tad excessive, but after awhile, I really grew to love the positive, beautiful pictures of children with autism from all over the world.  This page really puts a face (so many of them) to the label of “autism,” and it’s definitely not “Rain Man”. (@autismshines on twitter)

Single Mothers who have Children with Autism, is another page: “If you know or love someone with autism, have autism or just want to learn more about autism then you are welcome here. Follow us on twitter too at: www.twitter.com/SingleAutismMom”  I just started following this group, but I love that they share posts asking for advice.  They also share graphics with messages that jive with how I feel about autism in general, i.e. “Autism is not a choice, however Acceptance is.”

Finally, Shared Abilities is a new one for me, as well: “www.SharedAbilities.com is A Community for SHARING Information about Special Needs and Celebrating All We are ABLE to Accomplish!”  This is the Facebook page for a website with forums (fantastic resource for parents of kids with special needs!) and a newsletter.  They also post about various fundraisers and local opportunities all over the country. (@SharedAbilities on twitter)

You see, I use my Facebook page to share things that I think the people who care about me (and my son) ought to know, if they don’t already.  I love being a voice for people with autism, and indeed anyone seeking acceptance.  If others find that obnoxious, that’s their problem, and not mine.

I hope you check these pages out — I know they’re worth your time.

Autism and Puberty for Boys

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The Boy is 11 now, and just within the past six months or so, he has been experiencing some significant changes to his body.  He is much more private about using the bathroom and taking a shower, and I’ve been fretting about just how to talk about this stuff with him.  I’m not really an expert on the boy process, you know?  I always learned about the girl stuff in school – go figure.  And with a mostly absent dad, and a fiance whose job it really isn’t anyway, it’s left to me to explain…

A friend mentioned that The American Girl company (that makes the dolls) has an excellent book on this subject, but alas, it’s for girls – go figure.  This left me to wonder was there anything out there for boys??

Then the other day, Autism Speaks (love them or hate them, they do have awesome resources!) posted on facebook about several resources for boys with autism going through puberty.  Amazing how some things just fall in your lap at the right times.  I ordered two of the books, Taking Care of Myself by Mary Wrobel and The Boys’ Guide to Growing Up by Terri Couwenhoven.

puberty books

Taking Care of Myself is more of a curriculum resource for teachers (primarily), focusing on hygiene and puberty.  It is for both boys and girls.  I am still working through it, and will do more of a full review later, but it seems to contain social story-based text that you can use in multiple formats for your child with autism.

The Boys’ Guide to Growing Up is a much shorter book, designed to be read to or with your son with a developmental disability.  It focuses on the internal and external effects of puberty: changes to the body, and changes in feelings.  It spends a lot of time discussing the difference between public and private, and what is OK to share publicly, and what is better done in private.  It only touches on hygiene. It is written at a third grade reading level so that more boys can access the information, and it is repetitive so that main ideas are reinforced.  It also has illustrations which are appropriate.

Neither of these books talks about sexuality or intercourse, which is just fine by me!

Hygiene is starting to be an issue with us, so I think using both of these books is going to be the best bet for us.  But with The Boys’ Guide to Growing Up, I feel like I can have a conversation now with The Boy about the changes he is beginning to experience, and feel less like an idiot.

I’ll keep you posted.

No Offense, But…

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You know when someone starts a sentence like that, you are going to immediately take offense.  It’s a given.  I’m pretty sure there’s even some physical, defensive response in most people upon hearing that phrase uttered.

The Boy’s class is having a “garage sale” tomorrow to simulate buying and selling products, and I suppose it’s a lesson in social studies.  Of course, with our busy, busy lives over the past couple of weeks, I put off the preparations for this garage sale until this evening.  The idea is that students will find things at home that they do not have a use for anymore, and put those in their desktop sale.  Most kids with autism that I know would (and do) have a real problem with giving up their stuff, so we had a bit of an issue.

I wasn’t sure how many of these “items” we needed, so I contacted a friend who’s daughter went through the same school a few years ago, and asked her if she knew.  She contacted another parent of a 5th grader and reported back to me.  She said this other parent suggested 10-20 items, and that if the kids didn’t want to give anything up, they could do a craft.  My friend asked her if The Boy might draw something (because she knows how much he loves to draw).  This mom responded, “No offense, but it should be something the kids actually want.”

Now, this is secondhand information, and like texts and email, a lot of nuance can be lost.  I’m sure this mom really meant no harm, and she was actually being helpful by passing along information about this event.  But like one of my other favorite phrases (“Don’t worry about it!”), it ends up being immediately offensive, and just by adding “No offense” to the beginning doesn’t give you a pass.  Just because you don’t mean to offend someone doesn’t mean that you won’t end up actually doing it.  It’s a pretty useless prefix.

I know that maybe other 5th graders may not appreciate The Boy’s artwork as much as I do, but there are some really great kids in his class who would probably purchase a few of his items.  In fact some of his “longer works”, which are often pages of comic books that are running through his head, are pretty cool and entertaining.

I’m not upset.  I know that my kid rocks, and I don’t need anyone else’s approval.  But I think the phrase, “No offense…” needs to be put to rest.

apic

Yes, We Are Moving

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Our empty dining room in the new house...I did the mental math the other day, and it is only about six months away… Yikes!  I have so much to do.  It seemed like so far away for so long, that now I actually have to get out the planner and start penciling some stuff in!  I can’t believe it!  There are so many things we have to do like have a huge garage/Craigslist sale (which will basically entail a whole house inventory, and lots and lost of decisions), meet/talk with the autism society liaison where we’re headed so I can make some plans for The Boy, not only for school, but also for the summer, work on my transition plans for The Boy (including making a “Big Move Book” for him), and then the long list of actual moving details…

The last time I moved between states, I was four years old, so I wasn’t so involved with the details.  Now I have pesky things like a driver’s license and bank accounts that will need to be switched.

Oh, and there’s that small detail about employment…

And health insurance…

I think I’ll get right on this…

In January.

Meltdowns, Blame & Brains

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The glasses we found in Myrtle Beach broke.  In the parking lot to The Boy’s favorite restaurant the other night – the lens had been popping off, and it popped off onto the concrete, and promptly broke into pieces.  He flipped out, obviously upset.  I tried to quickly calm him, but it was a no go.  It escalated, and I had to physically manhandle him into the car.  Then, because we were headed home, everything was my fault.  I broke his glasses by “punching them” with my fist!  I am the “meanest mom ever”!  I “hate” my son, and “want to kill” him as soon as we get home!

Through all this I was silent.  We got home and the harangue continued for a short while.  I sat down and pointedly ignored the ongoing outburst.  He came over to me, attempting a hug, all the the while still blaming me for his misfortune.  At one point he asked what it would take to be allowed to go back to the restaurant.  I told him I needed him to calm down, and I needed an apology.  The first apology I got was pretty backhanded, and so I explained that he had hurt my feelings with the things he had said.  I reminded him that I love him no matter what, and then he apologized for hurting my feelings and blaming me for the broken glasses.  After he had calmed a bit, we headed back to the restaurant and had a nice dinner.  At one point on the way home (again), he said all of the “hims” inside his head had made him think wrong about what had happened.  I asked how many were in his head, and he said, “Millions!”  I said they’d have to be very small to fit a million little versions of him in his head, to which he replied that they were microscopic, and you could only see them with a microscope.

He seemed to be joking, but sometimes the things he thinks up boggle me.  I can’t even begin to fathom how his mind works and processes information.  There’s a video on upworthy about having “empathy”, and “what it can be like for people with autism” – maybe you’ve seen it floating around facebook.  My mom brought up a good point, saying unless it was produced by a person with autism, wouldn’t it just be an NT assumption about what it would be like to have autism?  Yes!… But then The Boy watched it and said, “Hey! That’s just like real life!”

I don’t know if I will ever get used to not knowing what goes on inside that head.

This ultrasound shot of The Boy's Brain is probably the closest I'll ever get...

This ultrasound shot of The Boy’s Brain is probably the closest I’ll ever get…