Another

Posted on February 20, 2014 by simpleijustdo

Yet another friend of mine told me recently that she and her husband were separating. And they have a son on the spectrum. I don’t think it had a lot to do with their decision, but it may have been an elephant in the room because her husband is probably also on the spectrum but was never diagnosed. They just told the kids this past weekend, and they are all still reeling.

And my best friend at work called a lawyer today to make an appointment to get the ball rolling on her divorce.

People in my circle are hurting, and I empathize. They are in places I was in, what seems like a long time ago. Ages ago. Lifetimes ago.

Luckily I know what not to say. I know what they do not want to hear. And I hope they see me at the other end and take heart that the pain they are going through does not have to last forever. They are both strong ladies, but even the strong have weak moments, and this is one of the hardest struggles they will ever live through.

My heart aches for them, but I also admire them for their strength to face what they are in for. And I stand ready to catch them when they need to lean on someone.

Not Fate But Opportunity

Posted on February 18, 2014 by simpleijustdo

I like to think that there’s a reason for the important stuff that happens. Not the “God doesn’t give you what you can’t handle” garbage, because there are lots of people who can’t handle what they’re given. But I like to think that when you are open to opportunity, there’s a hell of a lot of coincidence out there to take advantage of.

My background as a teacher has always helped me be a better parent to The Boy. My background as a band director is helping me fight for my son’s rights as I write this. Even my first crappy marriage has made me a better wife the second time around.

Tonight, I became the lynch pin, the go-between for my autism society friends and my boss’s wife who owns a local restaurant and offered for them to have fundraisers at her place. And it was so coincidental, and so much good came of this chance meeting of people who happened to know me… There are times when nothing seems random, yet we seem so incredibly lucky.

It’s times like these when I feel like I am contributing something good and important to the world, even though I am not as nobly employed as I used to be. I’m building a network of good people who can help each other out, and have a direct positive impact on everyone in our community. It’s a rare thing, but it’s starting to happen… I love opportunity!

The Problem with a Spectrum Disorder

Posted on February 11, 2014 by simpleijustdo

“The difference between ‘high functioning’ and ‘low functioning’:high functioning may mean your child’s deficits are ignored and low functioning may mean that your child’s assets may be ignored. It is our job to educate and make the community aware of our child’s strengths. Inspire others to do the same.”

Picked this up on facebook (someone point out the original attribute if you know). These “functioning” classifications have always irked me a bit, but in spite of that, part of me says, “Hell, yes! This is the truth!” And I suppose it is for many on the spectrum who are clearly “high functioning” and many who are clearly “low functioning.” It’s a paradox for kids (and adults) who “pass” for neurotypical – People see no tangible issues and have expectations that can be unreasonably high, as well as for kids (and adults) who clearly have issues, and as a result people have expectations that are unreasonably low.

The other part of me says, “And the kids who are in between are the most misunderstood,” because that is The Boy, and he is misunderstood. He’s bright and clever, and with proper supports, is very capable of A level work in school. But he needs the supports, and is a good bit away from “passing” for neurotypical. People see his issues, and have no idea what to expect.

Here’re my two cents: While it is important to enlighten the community about typical behaviors, commonly used strategies, and the like, we must also hammer home that every child has different strengths and “areas of opportunity” – nothing is as it seems. No child on the spectrum is what you expect, and only by getting to know each individual will you begin to understand them, their struggles, their triumphs, and their potential.

A Peek Into Their World

Posted on February 7, 2014 by simpleijustdo

Yesterday, we had an informal parent meeting with the teacher of The Boy’s program and the county autism specialist to check in, and give some feedback about the program so they can satisfy their grant requirements. Everyone was very pleased, and remarked at what a haven they have created for our boys, and how thankful we were for the program’s existence. The teacher then told us we could look at our kids’ binders where they keep their journal writing related to their social skills class. The Boy hasn’t done much of this because he is the only 6th grader in the program, and therefore doesn’t have much of a social skills class, but the other parents were like little children on Christmas, “Can we really look in their binders??” I watched as they read the entries, pointing out certain phrases to their spouses, all the while reading like they wanted to get to the end of the book before lights out. For parents who don’t often get verbal communication from our kiddos, this opportunity was an incredibly valuable peek into their world.

I’m so thankful for special education teachers who know what their doing, programs that provide what our kiddos need, and opportunities to connect with our boys, even indirectly.

Out of Sync

Posted on February 5, 2014 by simpleijustdo

I find myself really empathizing with The Boy this week. My post yesterday highlighted how important it is to have something that helps you calm down when you get ramped up, and I’ve been ramped up since Monday morning. Along with that, my routine has been blown to smithereens in the past week.

You see, today should be the weekend.

I have worked everyday since last Friday, and by my calculations, in a normal workweek of five days on, two days off, today would be an off day. But it’s not, and I am all discombobulated, and out of sync. I have three more days of work until the weekend, and if I am able to keep from snapping at someone at work, it will be a miracle. It’s a busy time for my closest colleague, as her half of the business has a big roll-out at the end of next week, and right now we are all chipping in to help it happen, even though we have plenty on our side to do, as well. And then you throw in the drama of one of your underlings blaming you for a mistake she made and referring to you as a “dumbass” to the boss…

Anywho… I’ve been “on” and working hard for a full work week, and feeling like I need a break. Again, like our kiddos, trying to adjust to a change in my schedule, managing my emotions while desperately needing some down time. A good reminder how tough it can be for our children on the spectrum.

Managing My Own Anger

Posted on February 4, 2014 by simpleijustdo

Yesterday was a doozy of a Monday. I felt like Alexander in the Terrible, Horrible, No Good, Very Bad Day (a favorite when I was growing up). There was an ant in The Boy’s juice, the cable box went wonky again, a co-worker lied to our boss and threw me under the bus for a mistake that was very clearly hers and hers alone.

And mid-afternoon I get an email from The Boy’s principal saying perhaps he could start on trumpet this week because he doesn’t meet the “criteria” to play the tuba. Yeah, that just happened.

There were no “criteria” to play the tuba even mentioned at our last meeting. That band director is discriminating against my child.

Luckily, I didn’t get the email until about 3 or so, because truthfully, I couldn’t concentrate on work after that. I was extremely preoccupied, and downright pissed off. Heart beating rapidly, I left work right at 5, and drove to pick up The Boy, planning my evening around the big, long response I was going to write.

The Boy was in a great mood, and I faked a good mood for him, as well. I shared the happenings with my parents and strategized about next steps with them.

When we got home, I began to type all of the phrases that had been rolling around in my head for three hours, constructing my three-page response. And I began to shake uncontrollably. Not with rage, but with anxiety. I also made several trips to the bathroom, which I have had to do when stressed since my mid-thirties. When The Man came home an hour later, we talked, and strategized some more, and I continued to write. I spoke with The Boy’s autism teacher on the phone to gain some insight, and then I continued to write. The Man knows that getting all of my thoughts down just right in my response was the key to my calm. Until it was a finished draft ready to send, it would be on my mind.

And of course, I couldn’t sleep last night. I knew it would happen, but there’s nothing I can do about it, so I just roll with it, going over things yet again in my head for several hours.

My draft is now complete, and it is a killer letter. I have a plan in place, no matter the response. He will play the tuba, and will not be switching to anything else. I’m still angry and anxious, but I’m managing it, thanks to my outlets: writing and planning. The key is knowing yourself enough to know how you are going to respond to anger, both physically and mentally, and to have something accessible which calms you… A bit like our kiddos, huh?

Snow Day

Posted on January 28, 2014 by simpleijustdo

We’re having a snow day here in the south. The bread has been cleared from all of the Walmart shelves, and now we hunker down in our houses for 48-72 hours and wait for it to warm up enough to melt any snow accumulation we may get because of the fabulous lack of snow plows or road salt. It will be in the 60s this weekend, so we shouldn’t have to wait too long.

So far this year, we have had several 2 hour delays at The Boy’s school, which is disruption enough, but today is our first actually snow day, and even my office is closed. The snow is not anticipated to really start until this afternoon, but it is raining and cold, so why not?

We are desperately hoping we don’t have a power outage, but getting things ready, just in case – gathering reading material, charging up what can be charged, and locating candles in our recently re-packed Christmas bins.

This has been a winter to remember, and it is only January. I can only imagine all the kiddos on the spectrum in the northern states who have had very little routine in the past couple of months. The Boy was so ready to go back to school after Christmas, and has yet to have had a completely full week of school, and I know conditions are much worse in other parts of the country.

I let him sleep in a bit today, but we will be reading his novel, something he will probably consider homework, which is just NOT DONE on a snow day. But it needs to get done, and so read we shall. For now, we are playing with our new Chromecast (a Christmas present to myself).

Considering 140 million people in our country are under some sort of winter weather advisory, here’s hoping you are managing, wherever you are.

snow day at our house

What Do We Do?

Posted on January 22, 2014 by simpleijustdo

I followed Avonte’s story from afar. I didn’t allow myself to get to close, especially as the search went on. I know the statistics, that after the first 48 hours, the chances of finding someone who has gone missing are infinitesimal. And that is probably a statistic attached to neurotypical, verbal people. When you add nonverbal autism into the mix… Let’s just say my mind stretched toward dark places.

So I stayed aloof. Until Thursday. And then I couldn’t stay away any longer. I knew it was him. And I began to cry whenever I let my mind get close to the story. I pushed it away, waiting for the other foot to drop. And yesterday it did.

There are no words.

I just can’t imagine. And I can, and I don’t want to, and it hurts, and I feel such sorrow. And anger. And hopelessness.

So the question now is, What Do We Do? Do we say “That’s so sad,” and go back to our lives and do nothing like when Newtown happened? Or do we actually do something? Is this acceptable in our society? Can we lose more nonverbal kiddos so easily?

What do we do?

Maybe the first thing to do is send our condolences to the Oquendo family:

The Perecman Firm
Attn: The Oquendo Family
250 West 57th Street
4th Floor
New York, NY 10107

Meet The Boy

Posted on January 21, 2014 by simpleijustdo

In light of recent comments, I thought it might be time to do a post that re-introduces The Boy and his issues to this audience. The Boy was diagnosed with classic autism at the age of five. Although he has a fairly high IQ, and is a generally bright boy, he was not diagnosed with Asperger’s because he did have developmental delays, and was in speech and occupational therapy starting at the age of two. He has since “graduated” from OT, and now has speech therapy in the form of working on pragmatic social skills once a week with the speech therapist at school.

In his new school, the pilot program for which we switched schools has organizational periods for the kids on the spectrum at the beginning and end of the day. They meet with the autism teacher and aides who help them get organized for the day in the morning, and help them get organized before they head home. He also has a social skills class with his autism teacher. Ideally, he would be interacting with other 6th graders on the spectrum, but he is the only 6th grader in the program, currently, so they spend some time on social skills, and some time on homework and organizational skills during this period. He is also allowed to eat his lunch in his autism teacher’s room. This is his safe haven.

The Boy has issues with executive functioning, verbalizing his needs (as well as verbalizing anything having to do with school, like assignments and tests), and gets overwhelmed by his senses at times. He has issues with processing speed, and can get overwhelmed with assignments that require a lot of writing. He has the requisite deficits in social and organizational skills, as well.

Per his IEP, he is to receive extended time on assignments and tests, sensory breaks as needed, modified assignments and tests, use of graphic organizers, testing in small groups in a separate setting, use of a word processor, and use of visual work systems (visual cards that will cue him as to what to do next, and when the next break is) in all classes.

His teachers do not send home much homework, which helps us, because like most kids with autism, he has a very great antipathy for it. Logically, schoolwork should be done at school, rather than at home, and it just doesn’t make sense to him to have to do work at home. When we do have homework, we break it into chunks that we can do from 15-30 minutes at a time, and then we take a break, sometimes with an incentive (m&ms work wonders), before we get back to work again.

Most of the teachers at his new school get it. They are willing to teach him according to how he learns. They are patient and understanding, and willing to listen to suggestions. We are very lucky, and I am so glad I was able to work so hard to get him placed in this school. It has meant a world of difference to The Boy. He is happier, I think, because he is more understood.

I communicate with his teachers as needed, and never too much. I do not get in their faces when there is an issue. I offer suggestions when they are asked for. I work with my son on his schoolwork and practicing whenever he has it.

My son has special needs. My son has rights. My son has patient and understanding teachers (mostly). My son has me.

Celebrities and Autism

Posted on January 6, 2014 by simpleijustdo

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.