April, Autism, Awareness, and Acceptance

Unfortunately, the autism community is polarized (and therefore paralyzed) on many issues. It’s fairly divisive (go figure in these days and times!), and people have widely differing views on everything from person-first language to vaccines. We can’t even agree on what to do with our little month of April. For most, “awareness” of autism doesn’t cut it, and we should be seeking “acceptance” of our kiddos and their behaviors, needs, and neurology from the general populace. Some (myself included) feel like awareness is a necessary first step that leads to acceptance, but others are not content to be patient with the rest of the world.

I get it.

But if we as a community continue to argue about every issue that exists, the result could be worse than a lack of awareness. If the message is muddled or unclear, no one hears it.

We need to agree to disagree on the issues that divide us. Table them until we can tackle each in its own time. Focus on one thing that will do the most good for those on the spectrum.

In my humble opinion, this one thing would be autism awareness and competence of our nation’s educators.

It is unfathomable to me that teachers across the country are still unaware of the core deficits of autism. They are as of yet unaware that an IEP is a federal document, and a binding agreement to which they are held accountable. They do not know how to make simple modifications and accommodations for a growing segment of their student population. And of course I do not mean all, or even most teachers in this country. But our special ed teachers need help, folks. If our kiddos have a right to the least restrictive environment, we want them in general ed classrooms with teachers who have a clue. Because let’s face it – our kids are at school each day much longer than they are at home. And if they are met with adults who see them as a “problem” or ” more work” or are just clueless in general about how they work, how devastating is that to this entire generation?

If the community could just get behind one urgent issue, this would get my vote, and I don’t think we’re very divided on this one.

This would be my wish for April and the autism community at large.

Dear Autism Community

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One of the biggest struggles I have as a parent to an autistic child is that others are not as prepared as I am. If there’s one thing I’ve learned in the nine years since The Boy was diagnosed, it is that you need to do the groundwork in advance, or the likelihood of a meltdown or other avoidable issue increases. For example, when you know dad will probably cancel Spring Break, have a plan B to distract The Boy from his disappointment. Learn which restaurants only serve soda pop, so you can either avoid them or bring your own juice boxes. Half days before break are going to be hell, so find out who will be absent, prepare The Boy as much as you can, and hunker down.

hands-coffee-smartphone-technologyLast night, I got a text from The Boy’s band director. “Wear your band shirts tomorrow for pictures.” Um… The Boy wore his band shirt yesterday. If I had known, say last week, I could have prepared a bit better. No meltdown this time, because I just made him take it off as soon as I got the text to avoid spillage, but he’s basically wearing the same thing to school two days in row. *sigh*

It’s almost April, and I’m remembering why we used to have The Boy’s physical scheduled for February… camp applications. Except the local Autism Society chapter has great and exciting news (that they’re having a hard time getting the word out about) – they will be hosting an overnight camp and a day camp this summer! Great! How about some information to go along with that, like dates, and say… physical requirements? Because if it gets to June, and there are no more spaces, or we didn’t get a physical in time, I’ll have a melted kid on the sidewalk…

I know I can’t rightly expect the rest of the world to conform to our needs, but whatever happened to a little advance notice? I don’t think I’m asking too much, and I know people get busy, but seriously? IEP questionnaires that get sent home two days before they’re due, no information yet for chaperones for a trip to Washington DC in May, no word yet on when our spring IEP might be…

The Boy is not alone in his anxiety :/

Keys to Independence Challenge

One of my greatest worries in life is what The Boy will do when I am gone. My goal, and the goal of most special needs parents, is to prepare my son to be the most independent person he can be. We don’t know yet what his living situation will be, nor do we know how and where he will work. But right now, I can prepare him for the basics, and I can do it by introducing him to things adults do every day. Each introduction may or may not be successful, but at least he will have had the experience so that we can build on it in the future.

Here is the Keys to Independence Challenge I mentioned last week.

Keys to Independence Challenge

 

How does this work?

For each day of the month of April, you attempt to introduce your child to the skills above. If they’ve already had experience with it or do it on a regular basis, try switching things up a bit to increase flexibility. If you’d like to document your work with a picture or a status update, you can do so on social media with the hashtag #keystoindependence so people can check it out and get some inspiration.

Is this only for teenagers?

Nope. You can totally do many of these with younger children, with a little forethought. It could just be learning about the skill rather than actually performing it, too.

Is this only for kids with special needs?

Heck no! I know some neurotypical adults who could benefit from this practice! 😉

What if we miss a day (or three or five)?

Hey, life happens. Especially in a special needs home. No worries! You can skip it completely, or come back to it in May, if you’d like.  No one is keeping score.

What if my kiddo doesn’t want to do it?

The Boy is of an age where he relishes the thought of being an adult, and having a little independence.  I’ve prepped him a bit for this, but I have some backup incentives, too. Think about what motivates your kiddo and see if you can’t build that into the challenge.

What if I don’t understand what the day’s task is?

Interpret for yourself, or check my facebook page or social media and search for the #keystoindependence hashtag – you’ll see at least my take on the day’s prompt.  I just opened up an Instagram account for this very purpose @SimpleIJustDo! But there are no right or wrong answers here.

What if I don’t want to post about it or post pictures?

No worries! You do you! But we’d love to hear how it’s going for you! If you do decide to post, just include the #keystoindependence hashtag so we can find you.

If you have more questions, feel free to let me know. I’ll be posting about the challenge on my facebook, twitter, and now instagram accounts if you want to follow. If not, I’ll still be posting about regular stuff, too.

As always, thanks for your support, and here’s to an enriching April!

Keys to Independence: A Challenge

Recently, Grammy & Poppy left town for a few days, and rather than disrupt The Boy’s routine, we planned for him to still go to their home after school to hang out until The Man or I could come to pick him up. In preparation for this, I had a spare key made, thinking I would give it to The Boy, show him how to work the lock, and let him practice for a few days. Except that the key I had made didn’t work, and when I attempted to show him, he got frustrated lightning-quick, and didn’t want to try anymore.

We resolved that situation another way, but it has me thinking about all of the things a 14 year old on the spectrum should be practicing for the day when he has a bit more independence. You see, we are both tired after our long days of work, and I don’t push too much at home, especially during the week. Weekends, I ask a little more, and now and then there are certain chores he helps me do. But I know we could do so much more, and work on that lightning-quick frustration level, too.

Planner nerds and Bullet Journal Junkies often have monthly challenges, and the idea is to take something you’d like to practice, like doodling or hand lettering, and do it each day with a guided prompt. You commit to the challenge, you do the prompts, and you share with a special hashtag on social media (and lots of people miss days, or get “caught up” later if they get behind – no worries). I’ve been thinking about doing an Independence Skills Challenge for the month of April, which also happens to be Autism Awareness Month. There will be a list of “prompts,” or specific independence skills to encourage each day or couple of days. I will share more details next week, and I would love it if you would join us with your own kiddos (on the spectrum or not!), but I’m excited, even if The Boy and I are the only ones doing it.

Keys to Ind Chall

Sharing

The Boy is a only child, and as such, doesn’t have much experience with sharing. It’s a common problem for a neurotypical kid, and for one that lacks theory of mind (the ability to understand that others may have different thoughts and emotions of their own), it is even tougher.

This past weekend, The Boy got up earlier than us one day (!) and headed to the living room. He turned on the On Demand feature on our cable and found the Sonic cartoon he was looking for, pressed play, and promptly began recording it within some app on his iPad that records in black and white. This is a new twist on an old interest – making things look like the pre-color era, and has even permeated his drawings, making Sonic look like Steamboat Willy.  Pretty cool, actually.

The problem came a little later when we returned from a family outing, and he promptly sat on the couch and started u the On Demand feature again. The Man’s intention, of course, was to come home and watch a little golf (and therefore I was going to take a nap). Because the living room TV is a shared TV, and The Boy was told he had to work out a schedule with others that want to use it, a meltdown ensued.

young-game-match-kids

Time to pull out the board games and practice turn-taking, too.

What can you do? He just doesn’t have much experience with this? If he really had social skills class (like he’s supposed to), I’m sure this is something they would practice. He used to practice turn-taking when he was a little one in speech therapy. All of this has me wondering, what social instruction is he getting, anyway?

A new friend reminded me of those days, hauling him to speech and occupational therapy even before we had a diagnosis. And the speech therapy fell to the wayside when the school began to provide it. He had an awesome speech pathologist in Elementary who focused primarily on pragmatics, but here, his time with any speech (or social skill) instruction has dwindled to almost nothing. Maybe I need to see what insurance will cover and get The Boy back into a social skills group outside of school again… There’s clearly some skills that need practicing.

Transition to High School: He Has No Idea

Last week, I wrote about the “attempt” by the district to get some input from The Boy regarding his future for our upcoming IEP meeting during which we will discuss the transition to high school. The amount of effort put into getting his input was exactly one worksheet, borrowed from another school district. At that time, I was too busy shaking my head to know exactly what to do next.

IMG_4678I took that worksheet and put it into a digestible format (PowerPoint), and added some possible answers for The Boy to choose. I didn’t send anything in on the “due date” which was Friday. Over the weekend, I sat down briefly with The Boy and the roughly 15 slides with questions about his future. “Hm,” he’d say. “Go to the next one,” and “I haven’t really thought about that before,” were common responses. To summarize, I got nothin’. Monday, I sent in my responses to the parent survey (it is now Tuesday morning, and they are still in his backpack, by the way), and emailed his special ed teacher to explain that he didn’t have much response to the student survey, and it was either because he really doesn’t have any idea, or he’s not comfortable sharing his ideas at this time. Her response was that she had a simpler survey format she could send home. No doubt copied from the same school district… I replied that I didn’t think it was the format, as I had modified that for him, but the content was the issue, and that he really has no response.

What do they expect? Mom asks 15 questions or hands him the worksheet and they’re magically going to get profound and thoughtful answers to just what is going on inside my son’s brain? For the umpteenth time in the past three years, I have to ask, “Are you NEW here? Do you not know ANYTHING about autism?”

A serious, thoughtful, student-centered approach would be to integrate some of this transition planning throughout the 8th grade year, directly within the “social skills class” curriculum… You know, that curriculum that the principal wants to change willy-nilly based on what she feels like is important for my son? But what do I know?

I sometimes wish I didn’t know how half-assed they are approaching my kid’s education. Maybe ignorance would be bliss. But I do know, and I’m powerless to change the culture of the school and the district. That change has to come from within. I can scream and shout and threaten legal action all I want, but change is terrifyingly slow in education, and even those on the inside are mostly powerless to change it, as well.

My only course of action is to muddle through and shake my head.

 

 

Up and Running

If you’ve followed the blog, you know that we are building a house primarily so that The Boy can attend high school with the friends he’s made in middle school. Since his program was dissolved, he would have to attend a high school with strangers if we did nothing. Coincidentally, building a house basically on his own has been a dream of The Man’s forever. He has done enough reno to understand how houses are put together, and he has enough contacts in the industry to get licensed professionals who are also friends to do the things he can’t do (like wire and plumb the house).

Well, it’s been a tough fall, dealing with a less-than-scrupulous contractor who cleared a quarter of our acre-sized lot and charged us almost $15,000. If you have no previous experience, this is quite an exorbitant sum for that amount of work, and the guy used to be a friend! We have agreed upon a settlement  (in other words, we won that argument), and have been able to move forward with the help of some fantastic weather. We may even have roof trusses up by the end of the day tomorrow.

IMG_4688

The Boy and I visited the lot yesterday evening to check it out, and he was delighted to see where his room and bathroom would be, even if he wishes it were upstairs like his friend’s room is at his house (ours will be a ranch).

The Man is working hard, sleeping hard, and probably overdoing it right now, but he is single-minded when there is a goal within reach. He hopes to have us in by the 4th of July. The Boy and I are excited, even though I see the bills on the other side. It really will be a dream come true for us.

And to top it off, when we visited the lot this weekend to make The Man take a break from installing 75 floor joists by himself, we suggested The Boy take a walk around the corner down to the end of the cul-de-sac. When he returned, he said that he saw one of his friends-who-are-girls. I thought he wasn’t quite telling the truth, but not two minutes later, a red minivan came around the corner, with a young teenaged girl pulling herself up to sit on the windowsill of the passenger side to say, “Hey!” and wave to The Boy. We suspect she may live a few doors down.

All kinds of reasons to be excited. 😉

Do as I Say, Not as I Do

We’ve had much discussion over the past few weeks, the school and I, about executive functioning skills and the need for a homework folder so that I know that what comes home needs to be completed/signed/looked at and returned, and the teachers and TA know the same about things that come from home. His teacher offered up a cat folder two weeks ago… via email, and I haven’t seen a single cat folder since.

Last night, while retrieving The Boy’s band music from his backpack, I found a random envelope that said “return by 3/18,” which contained a “Student Dream Sheet” and a “Parent Transition Survey,” which I have filled out multiple times before. The “Student Dream Sheet” is new, however. I took one look at it and immediately thought, “Yeah, right.”

IMG_4678It is a front and back sheet with 15 open-ended questions on it. I get that they can’t supply multiple choice answers because they are trying to understand just what it is The Boy wants to do in his future, but really? Is this the best way? They really think that this is even a possibility for someone who is fairly nonverbal? And it’s “due” in three days?

I don’t even have words at the moment, and I’m not really sure what I’m going to do about it. Yes, he needs to be involved, and ideally answers to “What kind of job do you want when you graduate?” and “Where do you want to live after graduation?” are important for us to have when considering his high school plan. But to expect that I can just sit down with him in an evening and get these answers (no doubt, preferably in full sentences – ha!) belies how little thought, effort, and expertise is behind this whole thing anyway. Shouldn’t an “assessment” for an IEP meeting follow the dictates of the IEP? Shouldn’t educators modify an information-gathering tool to the child with specific special needs?

“Do you have any significant medical problems that need to be considered when determining post school goals?”

Really?

Making New Friends

pexels-photo(1)I wrote recently about how we need to diversify, The Boy and me, and we need to find some new friends. My mom sent me a link to an article on adult friendship recently, which is long, but has a few good insights, even if I didn’t see eye to eye with the author on every point. And the very real truth here is that it’s difficult for kiddos on the spectrum to make friends, and it’s difficult for their parents, too.

In the article, they say that sociologists consider three “ingredients” necessary to form close friendships: “proximity; repeated, unplanned interactions; and a setting that encourages people to let their guard down and confide in each other.” And as adults, we just don’t have those ingredients readily available, at least not as much as we do  as when we are in school. In fact, I can’t even think of a setting like the one described above, except for some of the autism society events, like Friends and Fun, where kiddos and siblings come together on one Saturday a month to celebrate anyone who has a birthday that month. Who attends is really a crapshoot each month, as anyone with a kiddo on the spectrum can understand – some days whatever you had planned just ain’t happenin’. But we are able to talk about things we’re going through that neurotypical families just don’t understand, and it’s absolutely OK for your kiddo to stim and script to his heart’s content because everyone there gets it.

The article also mentions that we don’t make the time to maintain and cultivate the types of friendships that are healthy and enjoyable, and that in general, we need to do more of that. So maybe The Boy and I should just plan on going to Friends and Fun every month and make it part of our routine. I’d say it very well could be our best shot at diversifying, and getting some more eggs in some more baskets.

Risk

I’m not going to get into the habit of writing about work, but I wanted to let you know that my new situation is really, really good. And there’s a reason I’m sharing this with you today.

My old job, the one that “brought me to my knees” was a decent paying job, especially for our area. And it took me five months to get it. So for a year and half, I was miserable, thinking I couldn’t leave because I really had it pretty good, except for the screaming and yelling, the unreasonable demands, the constant checking up on the weekends… What does that sound like to you? An abusive relationship? Because it was. I saw it in all of the other people I worked with, too. “It’s not bad all the time,” or “It’s much better when he’s not in the office/ in the winter/ when he’s in a good mood,” or “There’s just nothing else out there.” Scary stuff, right there.

In my big picture way of looking at things, I see a parallel. This is another time in my life where I took a risk and said enough was enough. Life is too short to be so miserable everyday. And it wasn’t pretty. It was hard to be a single mom. And it was hard working retail for minimum wage. I did a lot of soul-searching, and it was painful. There were times in both cases where I thought, “Is this it? Is this all there is?” But there were benefits to both, too. At least I was free from a toxic relationship. At least I could do things the way I wanted to. At least I had an opportunity to learn a great deal. (And I ended up loving being a single mom, except for being lonely).

And then, something wonderful happens that changes your life around. And you realize your instincts were right. There are really, really good men out there who know how to treat others. And there are really, really good jobs out there where you actually get a lunch break with a side of respect. My advice is this: trust your instincts, and take that risk. It may not be sunshine and lollipops immediately, but life is too short to miserable. You deserve more.

In the midst of winter, I found that there was, within me, and invincible summer.