Author Archives: simpleijustdo

Malice and Cowardice in Anonymity

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I just read this article about an anonymous note written to the mom of a child on the spectrum, asking her to stop one of her children from playing and making noise, and stop her other child from staring at people out the window…  Eerily similar to the situation several months ago, with another anonymous letter to another mom of an autistic child.

I can only imagine my own emotions if I had received such a letter.  And I can imagine what I would want to do about it, immediately, ideas like:

  • anonymously write down a grievance for every one of my neighbors and tape them to their doors in the middle of the night, just to make sure everyone got a taste of how it feels
  • Take out a full page ad in the paper with a letter in response, or just a big middle finger
  • Grabbing a megaphone and walking up and down the street in protest
  • Taking my son to every house on the street to knock o the door and “meet the neighbors”

None of these, you notice, would be a very rational response.  But when you attack a person’s child, rational responses are the last thing you should expect.  Mothers can lift cars when their babies are in danger, after all.

640px-Envelope_-_Boonville_Address-002What strikes me about stories such as these is the cowardice.  Maybe it’s the influence of the anonymity (and animosity) of the internet, but people are too cowardly to attach their name to their grievances, especially when it comes in the form of a personal attack.  It’s because they know it is wrong, but they have such a selfish need to make everyone aware of their feelings (as if their feelings have more importance than others), that they have over-ridden socially accepted norms to vent those feelings.

We as parents to special needs kids need to be aware that these feelings exist, although the great majority of the people we encounter are too polite to ever say anything of that kind to us.  We need to tap in and feel that undercurrent of ignorance and irritation all around us.  We need to know it’s there so that when someone does slip, and they lash out at us in this completely inappropriate, malicious manner, it doesn’t feel like a punch to the gut.

I will never forget how awful an older woman made a four hour train ride for The Boy and me, before he was diagnosed, but not before he was a complete handful.  The whole time I was trying to control him, she sat behind us making disapproving noises and shaking her head.  I was simultaneously mortified and angry at her almost-silent judgement.

It isn’t right, and it shouldn’t be constantly on our minds.  But we need to know it’s there so it doesn’t catch us unawares.

Celebrities and Autism

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Jenny McCarthy was all over social media this weekend, because somebody reprinted an old interview, and everyone had something to say about it.  I haven’t touched this issue on this blog, and I call it an “issue” because just the mention of Jenny McCarthy divides people in the autism community into very disparate camps.  I’ve said before that I think this kind of division can not only hurt our kids, but also any progress we are making in enlightening society, and changing the world for our kiddos.

And truthfully, celebrities can say whatever they choose, not because it’s a first amendment right (because that is not what the first amendment is actually about), but because media and all of society expect them to have something to say on everything, and even if they don’t seek it out (although I’m pretty sure Ms. McCarthy did), sometimes they are pushed to voice their opinions.

Of course, when you do voice your opinions, one must understand that others may disagree with you.  And because you are a celebrity, and therefore so removed from real life, they may do so in a less than charming fashion.  Even founders of large nonprofits are not immune…  ahem…

I’m going to tell you right now that I have not read Jenny’s books (does she have more than one?), nor have I read any entire interviews.  I know that she claims to have had her words misconstrued, and misreported.  I have heard that she claimed her son had been “cured” of autism, and that now he may have not had autism at all.  I have heard that her book contained some outlandish theories about children with autism, something having to do with crystals… (??)…  As I said, I haven’t read it.  But I’m beginning to think I should.

I will tell you that I believe in science.  I believe in the many, many, many scientific studies that have repeatedly found no link between autism and vaccines, regardless of the schedule.  I believe that anyone urging parents to forgo vaccines for their children is dangerous to society*, and I believe the CDC, the WHO, and the NIH.

(*Vaccines protect those who cannot be vaccinated, but only if all who can, do: from the CDC website, “Immunizing individual children also helps to protect the health of our community, especially those people who cannot be immunized. These include children who are too young to be vaccinated (for example, children less than a year old cannot receive the measles vaccine but can be infected by the measles virus), those who cannot be vaccinated for medical reasons (for example, children with leukemia), and those who cannot make an adequate response to vaccination.”)

Autism has no cure.  It is a neurological disorder, not a disease, and not an epidemic.  It is not something from which you “recover”.

Autism is my son, and my son is autism.  I cannot separate them, nor would I want to.  Many adults with autism feel this same way, and they are much more entitled to be experts in our community than anyone else.

I believe we need to be more careful to whom we give credence. 

I believe we shouldn’t allow anyone to divide us as a community. 

I believe we need to understand and support good science rather than anecdotal evidence. 

I believe that we should be suspicious of anyone making money off of autism.

celebrate

Last Day: Looking Back

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I think it’s only normal for people to look back before starting something new, and New Year’s Eve is a logical opportunity to do so.  It’s also important.  One of the things teachers benefit most from but rarely have time to do is reflect on their daily teaching to analyze what worked and what needs to be tweaked.  True in non-teacher lives, as well, I know.  At the end of the day, thinking back on what was positive, and what we could have handled better helps us learn from our mistakes, and decreases the likelihood that we will repeat them.

This year, I moved house in a major way, got married, left my career, battled for better schooling for my son, wrote a novel, and got a new job which I love.  I’ve left old friends behind (but never forgotten), and made new friends.  My life has improved, sometimes by sheer will.  I compromise more (a new husband and a blended family make this absolutely necessary), I don’t get nearly as many headaches, I relax (fully) more.

At the beginning of this year, I couldn’t see past June.  It was a complete unknown – What would I be doing?  What would my son be doing?  How would our lives change?  Now that I am six months past that point of all that was unknown, I am proud of us for taking this leap, trusting ourselves to get re-married, trusting that we could find a good school situation for The Boy, and trusting that I would land on my feet with a job I didn’t hate, making enough to pay the bills.  I am very proud of us.  It was a big leap of faith, and it has turned out beautifully.

2013 has been a year of great change, of great opportunity, of great hope, and of great reward for me (and us).  I hope it treated you just as well.  I look forward to 2014 with great anticipation for continued growth for all of us.

Happy Old Year, Friends.  And Happy New Year.

English: This came from New Years Eve 2004 int...

Custom Built Bed for my Hypo-sensitive Boy

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The Boy is often hypo-sensitive, meaning he needs more sensory input than is typical.  He rubs his shoulder on the wall as he walks down the hall, loves big hugs, and could spend all day in the water if we let him.  He needs that extra input on his skin to be able to tell where it ends.  Part of this is that he likes to be under blankets, and in enclosed spaces, as many on the spectrum do, and has taken to hanging out in his closet to achieve the desired effect.  No problem except that he is getting bigger every day, and his closet is not.

I mentioned the other day that The Man had designed and was custom-building a bed modeled after the Captain’s bed style, so that The Boy could have an enclosed space under it in which to hang out.  Here is the (semi-) final result:

custom built bed

I say “semi” because, as you can see, the shutter door has yet to be attached on the end.  The Boy chose the color, and would like the door to be painted the same color, but alas, it is made of plastic, requiring special paint, and well, there’s only so much time in the day.  Some of you IKEA fans, may recognize the dark long piece with drawers that acts as a step and added storage that can be accessed from both underneath and the front of the bed.  It is from the Expedit line, and we used it for sorting the recycling at our old house.  It provides much needed additional storage in The Boy’s new room design.  We got rid of the box spring, and his mattress sits on top of slats, allowing for extra head room underneath.

The best part is that The Boy loves it.  It really is nice to have a husband that fulfills his promises and is incredibly handy.

Sad to Lose My Bright Spot

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My little kindergartener’s mom called today to say she won’t be coming back to me for tutoring.  She’s not verbal in the same way The Boy is not verbal, and her mom said she didn’t really know me, and you couldn’t be too careful, when she can’t tell her parents about anything that happens to her.

I get it.  Believe me, I do.

But I can’t deny that it hurts, and it makes me sad.

Once, when I was still doing my teacher thing, I was accused by a parent of putting my students in danger of heatstroke by having them march in a parade in 80 degree weather.  I’ve been called a lot of things over the span of my career, but that one really, really hurt.  That someone would think that I would ever harm one of my students was so wrong, such an unwarranted injustice to me…  Needless to say, it stayed with me.

As does this.  I looked forward to working with her, because I saw so much of my son in her, and she was a joy, a JOY, to work with.  I wish her well, and hope she gets every support she needs to become as independent as she can possibly be.  I hope she is able to advocate for herself someday.

Teaching can break your heart sometimes.

Broken heart symbol

A New Bed for The Boy

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Today, The Man is working on building a new bed for The Boy.  This is something he and I have promised him since before we moved, and it is now coming to fruition.  I’m actually glad we haven’t done it before now, because The Boy has grown so much physically in the last year that he may not have been able to fit if we had based it on how big he used to be.

You see, The Boy fell in love with a Captain’s bed when I was buying a couch for our new home.  While I was in the process of testing, deciding and purchasing, he had disappeared into the kids section – literally disappeared.  He had crawled into the “hidey-hole” underneath a Captain’s bed, closed the door, and enjoyed the new space so much, decided he had to have one.

After we moved here, when he needed that extra privacy, and the extra-enclosed space, he crawled into his rather-small closet and hung out in there for awhile.  Now that he is as big as me, it hasn’t always been the most comfortable.  The need for his own extra-private-enclosed space was becoming greater.

The Man is building his custom designed bed, complete with a shutter door on the end today (and probably tomorrow).  We went to pick out the paint color this morning, which I thought would be a long process, but was most definitely not.  We begin the process of working on making The Boy’s room his personal space, only six months after he moved into it.  And The Man is designing and building furniture for him to meet his particular needs.

I will add pics to this post when it is all done 😉

Merry Christmas and Happy Birthday to you, young man.  We love you!

Is it Time to Call a Spade a Spade?

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I described the ex’s latest cancellation the other day, and The Boy’s reaction.  I am always the one who has to relay the news to The Boy, and I am the one left to field questions to which I have no answers.  I am the one to deal with the acting out that quite often happens after one of these cancellations.

The ex will never change, but does that mean I shouldn’t try to show him what he’s missing, and what he is doing to our son?

English: : A mirror, reflecting a vase. Españo...

Time to hold up a mirror so he can self-reflect?…

I’m thinking of sending him a text (he doesn’t even access his email, and I don’t want to get into it with him on the phone) to point out that he hasn’t seen his son in eight months, and to ask him to imagine not having his own dad around for that long a time period.  Explain that I understand money is tight, and that he has a hard time taking work off, but that if he saved a bit out of every paycheck, and told his boss months in advance (instead of days), he might be able to swing it.  Ask him to stop “trying” to make plans and only tell The Boy he will see him when he is sure he can.  Point out that his son is sad and angry at him, and that he deals with this by acting out, often at school.

He will undoubtedly get angry and not speak to The Boy for months after I send it, because that is his MO.  But I feel I have the right to ask someone who continually hurts my son to take a moment to realize he is doing it, and to please stop.

I know he won’t change, but there’s a chance he has simply not given a thought to the effect of his absence and broken promises on his son.  And if there’s a chance, it’s worth trying, right?

Get Used to Disappointment

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One of my favorite lines from one of my favorite movies (the Princess Bride, which I have seen probably a kajillion times).  Not one of my favorite things my son has to go through.

Broken Reflection

Broken Reflection, Valerie Reneé

Because the ex couldn’t manage to see his son for Thanksgiving, I offered (at Grammy’s urging) to give him the week between Christmas and New Years for visitation.  I suggested he or they come down to the beach for a few days, even rent a house real cheap to see The Boy.

I hadn’t heard anything more about it (although Grammy had overheard the phrase “meet you somewhere” in a phone call between The Boy and the ex), so I texted him last night to see what was up.

I expected him to hem and haw a bit more, but he said straight out he couldn’t get any time off, and couldn’t do it.  Sorry.

I expect this every time, and yet every time I cannot fathom why.  I don’t know anyone (besides the ex) who is or would be completely comfortable not seeing his or her own child for eight months or longer, nor speak to him for a month or more at a time.  I cannot understand his excuses, knowing how much I would do to ensure I would see my child.

But he is not me.

The Boy seemed a bit upset and irritated when I broke the news this evening.  “Why?” he asked.

“Because he can’t get time off from work,” I said.

“Why can’t he get time off from work?”

I paused.  Good question, kiddo.  “You can ask him,” I suggested.  “Want me to text him and have him call you?”

“I’ll think about it,” he said.

He’s getting as tired of this game as I am.