Single Moms to Special Needs Kids

Posted on January 27, 2013 by simpleijustdo

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

Facebook Groups You Should Be Following

Posted on January 14, 2013 by simpleijustdo

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)

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

Posted on January 13, 2013 by simpleijustdo

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.

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.

Full Inclusion = Extreme School

Posted on January 2, 2013 by simpleijustdo

For the life of me, I cannot figure out why educators insist on sameness.

We spend most of a child’s formative years insisting to them that they are special, they are unique, they are individuals with a right to their own ways of being. And then they go to school…

They go to school and learn to become like everyone else, learning the same things, at the same pace, regardless of where their interests, talents, and abilities lie. Every student must take algebra, every student must take foreign language, every student will be proficient in x, y, and z.

I’m not sure when the trend toward standardization began in schools, although I have a feeling it’s been there since the beginning, because it’s easier and cheaper than individualizing instruction. The inherent problem with this is that kids are people, and there are no two people who are exactly the same. Therefore, everyone has special needs. I need a map if you are giving me directions, otherwise I will get hopelessly lost. The Man learns by doing – you can give him all the instructions you want, but he needs to play Euchre before he can actually learn all the rules. The Boy needs breaks and incentives throughout his day to get his work done. And he needs alone time with an electronic device to decompress.

So why the soapbox post today?

Recently, I have heard some teachers in full-inclusion situations say things like, “They do just fine, until they don’t,” or “He’s on those video games as soon as he gets into the car after school. I wish his mom wouldn’t use them as a crutch, a babysitter.” In the full-inclusion world, any kid that visits the resource room more than 45 minutes a week is “severe”.

Think about some part of your daily work that requires all of your concentration and effort. Now think about doing that task for six hours a day.

My kid with autism works so hard at being like the other kids in the classroom, and he has made great strides. There are still times where he escapes, lashes out, or just isn’t absorbing much, but he is working really hard. His ASD classroom provides a space for him to just be without the trappings of societal expectations. Does that mean the learning stops? NO, in fact, more learning goes on in that room because he doesn’t have to try to be someone he isn’t. In the ASD room (some may call it a resource room), they have the ability to slow down, speed up, back up, and stop if necessary, providing those little pit stops on the way to encourage the work being done. My kid with autism has thrived with this IEP recipe.

And maybe that kid with autism who is on the video games in the car is seeking respite from working his butt off in your classroom all day long. Maybe his mom lets him have that time to be himself because that’s what’s best for him.

Is full inclusion bad? No. Of course there are kids who will thrive in that set-up! We want our kids to have full access to the curriculum and the right to full inclusion if that’s what’s best. But I’m not sure why it has to be all or nothing for every kid — It’s pretty rare when “all or nothing” is a good idea in education.

I Don’t Want My Kid To Be Normal

Posted on December 7, 2012 by simpleijustdo

I was just reading an article about Brandon Stokely, a football player on the Denver Broncos, who has a son who has autism. I read until I saw this: “‘We wanted him to have the best possible care so he … Continue reading →

Meltdowns, Blame & Brains

Posted on December 3, 2012 by simpleijustdo

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…

A Look Back at October

Posted on November 1, 2012 by simpleijustdo

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 →

Sunday Shout-Out: NAA’s Little Shop of Hope

Posted on October 28, 2012 by simpleijustdo

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.

Moving

Posted on October 26, 2012 by simpleijustdo

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.

___

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 🙂

One of the Toughest Things

Posted on October 17, 2012 by simpleijustdo

One of the toughest things about autism is its unpredictability, which has a certain sense of irony, doesn’t it? The person with autism relies on predictability, craves it, seeks it out, and yet the disorder itself, for those of us on the outside, has it’s own set of rules, or more like a general sense of chaos. Just when you think your kid has a handle on the process of setting out clothes the night before, and understanding that we can’t wait until bedtime to decide to wear something already in the dirty clothes, here comes a curveball: “Where’s the sweatshirt that goes with these pants?” You know, the sweatshirt that got donated a year ago because it had a blob of glue on it…

And I have no solution. I try to distract, suggest alternatives, to no avail. “I’ll just spend all night looking for it,” says he. No, no you won’t. You’re going to be miserable, making me miserable until you pass out, which most likely will not be until the wee hours of the morning. And I can only hope you can move past this in the morning, or the first hour of my morning will be a trial, too.

Damn you, sweatshirt-with-the-blob-of-glue. Damn you.