Category Archives: Special Needs Parenting

The Best Advice

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My grandma used to say, “Do your best and that’s all you can do.”  It’s kind of a funny saying, but I repeat it to myself often, in particular because of the last part.  Anyone who loves me and knows me, knows that I am my very own worst critic, and that I’m often hypersensitive to criticism only because whatever you were going to say to me, I’ve already berated myself about inside my head about 57 times.  Sometimes I need to cut myself a break.

There’s a great book called the Inner Game of Tennis by Timothy Gallwey (I actually read the also great book, The Inner Game of Music by Barry Green and Timothy Gallwey, based on the same ideas), and one of the founding principles is that in order to perform well, you need to find a way to shush those inner “you-can’t-do-it” voices, the “judges”, as he calls them.  You have to find a way to take away their power to suck the very lifeblood out of you, because they will if given the chance.

I’m not a perfectionist, but I do have high expectations for myself, and the things I need to do, because often I am the only one to do them.  If I can’t, it won’t get done, which can lead to more problems.  But Grandma was exactly correct – if I’ve done my best (which is almost always the case) that’s all I can do!

After a full school day, starting at 7:30pm, getting out of my last school meeting at 5:00pm, talking to The Man on the brief ride home, having an hour to sit (whew!) and then heading out for another meeting that lasted a solid two hours, talking to The Man again on the brief ride home, and finally able to take my heels off at 9:30pm (after talking to Fantastic Babysitter, settling The Boy, and realizing I hadn’t eaten dinner), I realize I have done the best I can do today, and that’s all I can do.  Working out will have to wait until tomorrow.

dogasleep1

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.

Humiliating Your Child Is Not Parenting

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Did you see the Facebook post of the parent who took a picture of her son with his Playstation and a Captain America figure, and the sign he held up that said something like, “I had to return the Playstation I was going to get for Christmas because I didn’t show enough gratitude for the Captain America figure I got.”

Really?  This is what you came up with to teach your son about gratitude?  Using social media as a weapon, a source of humiliation and embarrassment?

I think there’s a growing trend of extremism in all aspects of society, and I think parenting has not escaped this trend.  Listen, I am not a pushover teacher.  I have many students who are not used to hearing the word, “no”, but I will say it as many times as it takes to be understood.  But in teaching and parenting, one must realize that we are dealing with children, who by very definition are still learning how to be human beings, which means they will make mistakes.  And when they make those mistakes, humiliating them in front of millions of people (or even your closest 200 friends) might not be the best approach, nor will it be very effective in teaching the lesson you would like them to learn.  The “lesson” or consequence should be immediate, should fit the action or behavior, and should directly relate to what you’d like them to learn.

If my son didn’t show the appropriate amount of gratitude, I would first ask myself, “Did I explain to him what my expectations were about showing gratitude when receiving a gift?”  If I didn’t, then we go back and review those – you can’t blame a kid who doesn’t know the parameters.  If I did make my expectations clear, I would remind him of my expectations, ask him to think about the amount of gratitude he showed when receiving the gift, and then ask him what he thinks we should do to fix the situation.  We might verbally apologize, send a hand-written thank-you note to the gift-giver, or even plan a volunteer experience with people who are less fortunate so we might learn a little bit about giving and receiving, wanting and needing, and all of the emotions involved (and how they are communicated).

You don’t get respect unless you give it.  Our children, who are still learning, and who will make mistakes, deserve our respect, not our ridicule.

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Small Victories at the Dinner Table

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One of my ongoing concerns with The Boy is his diet.  He would eat pizza 24/7 if he could, and never seems to tire of it.  He doesn’t eat anything green, drinks very little milk, and on top of it all, eats like a bird.  The homemade lunchables work fairly well (when I have the gumption to put one together, and not just send in a hotpocket with some applesauce – argh!), although we have been stuck with bagel pizzas.  But we have thrown a few newer things in with the pizzas like whole wheat bagels, ham pieces, and carrots.  I’ve also managed to get him to eat some summer sausage, cheese, and whole wheat crackers in his lunch, as well.  Baby steps.

Dinner is a different story.  I often try to get him to at least taste what I am eating, and I can usually get him to do that.  He will eat pork chops if I make them, and certain (okay maybe 1 or 2) chicken recipes, but NO vegetables, and only sometimes potatoes.  Last night, I intended to make a chicken crock pot meal, based on a new pinterest recipe I had found until I realized on the way home from the grocery store that my chicken was still in the freezer, and we wouldn’t eat until midnight if I tried it.  I made the mental switch to a different pinterest recipe which looked super simple, using hummus.  The trick was, I had already told The Boy about the first recipe, asked if he would eat it because it had cream cheese (anything with cheese is OK in his book), and he had said YES.  I didn’t tell him about the change of plans.  I simply served up the chicken, with a side of zucchini and summer squash, and…  He ate all the chicken!! (It was really good!) Then I told him he could have some cheezits if he ate one of the “green things”.  He ate it, realized it didn’t taste like much of anything, and when I asked if he knew what it was, said that he didn’t.  When I told him, he said, “I just ate a zucchini?!”

Yes, little man, you did.  And hummus, too.

Score one for me!

This is all that was left of the hummus-crusted chicken with zucchini and squash

This is all that was left of the hummus-crusted chicken with zucchini and squash

Full Inclusion = Extreme School

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English: A collection of pictograms. Three of ...

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.

Goodbye, 2012

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I suppose everyone has their own year-end list, but mine might be a bit different.

This year, I am thankful for

  • The Boy adapting so well to 5th grade, and making such big strides in terms of independence
  • My deepening relationship with The Man, now taking that next step
  • Finding balance between work and home, most days
  • The love and support of my friends and family, who remain incredibly supportive of our upcoming major life changes
  • You people!  Yes, you all, who are so supportive of my blog.  I LOVE doing this, and while I would still do it if no one was reading, it makes it that much more fun and satisfying that people are enjoying it.

I hope you, too, have much to be thankful for about 2012, and even more to be thankful for in the coming year.

Happy New Year!!

Ohio River

 

Missing

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The Boy is at his dad’s and has been for about a week.  He sounds happy and relatively tired when I talk to him on the phone each night.  While I miss him a bit, I am still savoring the respite: besides a few days this summer (Thank you, Fantastic Babysitter!) and a few days in June (Thank you, Grammy & Poppy!), this is the first extended break I’ve had since February.  In fact, by the end of this next week, it will be the longest time I can remember being separated from The Boy, ever.  For the same reason that I don’t feel guilty for being a working mom, and for the same reason I don’t feel guilty when I have the rare opportunity to go out with friends or The Man, I don’t feel guilty about enjoying this time right now.

This makes me a better mom.

respite

Without this time away, the threshhold for frustration gets dangerously low, and a whole range of negative emotions starts brewing.

The Man and I do feel like something (someone, more like) is missing at times, and we get bored a little more easily.  Ask me in three days, and I will definitely be missing The Boy fiercely.  But for right now, it feels good to not really have to worry about meds, schedules, and sharp crayons.  And The Boy is actually spending time with his dad.  It’s a win-win.

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