Big Meeting, the Second Time Around

Posted on November 7, 2013 by simpleijustdo

Our rescheduled IEP meeting is today, and let me tell you, I feel so much more prepared this time around. I am so glad that I was able to call them out on a technicality and give myself some more time to gather my wits and my resources. Today, I’m bringing our regional rep from the Autism Society in our state. I’ve talked with her a bunch over the last couple of weeks, and she will be there to advise me, and be an extra pair of ears.

They will still have a passel of personnel in attendance, but they don’t scare me anymore. I have data from his previous school that supports everything that I say he needs and isn’t getting. I have documentation in the form of emails from his current teachers that supports everything I say he needs and isn’t getting. And I have a better understanding of their intentions, as well as the process, and my rights.

And my focus now is on the IEP, even though we will be discussing placement, as well. He needs and aide, he needs autism-savvy teachers, and he needs help with organization. Period. I would like to see him go to a school that is better equipped for his needs, but I’m not as steadfast in that as I was, because I’m not sure I want him in a school where they so obviously are against him being there. When it comes down to it, no matter where he is placed, we will continue to have a fight on our hands, and now that I know that, I am better prepared to roll with the punches (Inner Biker Chick is present and accounted for, thankyouverymuch).

What a difference a couple of weeks makes. Let’s ride!

Laura & Margie – biker chicks, mslaura

Routines, Item Attachment, and Flare-ups

Posted on October 10, 2013 by simpleijustdo

We almost didn’t make it to school this morning.

The Boy had forgotten his (fake) glasses at Grammy’s house last evening, and wanting to head off a last minute meltdown, I told him as soon as he woke up. I told him we could get them later that day, and that would be alright wouldn’t it?… I breathed a sigh of relief when he said OK, but it was premature.

Once he was dressed, and it was time to go, he announced that he wasn’t going to school because he couldn’t go without his glasses.

I cajoled, made deals (and a few threats of consequences), and was finally able to get him out the door, a half-hour late. He wore a pair of reading glasses instead, and I went to Grammy’s, picked up his (fake) glasses, and took them to school for him.

It’s still frustrating, and there are always those moments of indecision – Do I let him stay home? Do I let him come with me to Grammy’s to pick them up? Or do I stick to my guns? What is the goal here? Today, I think I made the right choice. I don’t always, but no one is perfect.

I’m also starting to realize that for whatever reason, the glasses offer comfort to him, and that when he has a “flare-up” like this, it is a form of self-advocacy. He is telling me that he is not as comfortable going to school without them. And one of the best things I ever learned about autism is this: Behavior is communication.

Girls? Already?

Posted on October 2, 2013 by simpleijustdo

One of the challenges we are working on with The Boy and school is organization. He’s not getting much help at school, and as a result, a few papers are getting misplaced, and assignments will be finished but not turned in for several days. Every afternoon, I go through The Boy’s backpack and shake my head at all of the things that were supposed to happen and didn’t.

Yesterday, I was going through his planner, and noticed some papers that had been returned from science (with smiley faces on them!), and behind those papers, I saw a piece of loose-leaf notebook paper. Curious, I pulled it out and looked at it.

“Grillfriend” it said at the top. I immediately recognized the handwriting and the spelling error… It was from the girl who has been helping The Boy in his core classes – the one they use as an aide because they haven’t supplied him with one yet.

It went on to list her “mom’s phon” number, her “edres”, and the days she wanted The Boy to call.

I was at my mom’s house when I pulled this out, and remarked to her that The Boy might have a “grillfriend”. Unbeknownst to me, he had just come into the room and replied, “She wants to be.”

Grammy and I exchanged amused looks – what a great response! So I asked,”Did she ask you to be her boyfriend, or did she tell you?”

“She asked me.”

“Is she cute?” I asked, smiling.

“Yep!”

“Is she nice? Well, we know she’s nice because she helps you in your classes. What did you say?”

No response.

“Did you say anything back to her? Did you tell her you’d think about it, or did you tell her ‘OK’?”

“I told her ‘OK’.”

All during this conversation, he was smiling, seemed a little embarrassed, but kind of proud – completely typical responses.

I wasn’t expecting this so freakin’ early. I guess we’ll have to re-read that section of the puberty book to review what’s appropriate, and we’re going to have to talk about how to treat girls. GIRLS! I’m surprised but also delighted at how The Boy is reacting to all this. It’s all so stinkin’ cute.

Mama Bear, You’re Not Always Right

Posted on September 18, 2013 by simpleijustdo

I’ve had my share of trials over the past week or so. Not more stress than I can handle, but more stress dealing with The Boy’s schooling than I’ve had to deal with since he was in preschool. I’m not sure I handled every day and every communication in the best way possible, but I try to remain respectful, even when I am pretty sure the person with whom I’m conversing wouldn’t know an autistic trait if it hit them in the face. I don’t mind being the pain-in-the-ass mom who emails daily, because I wouldn’t have to if my son had more verbal communication skills, but he doesn’t. And if school personnel are not going to offer information, I obviously have to ask for it, respectfully.

I posted the other day on my personal facebook page: “Seriously. Between dealing with the ex and (The Boy’s) school this week, my big-ass Mama Bear is showing – watch out!!” In my world, “Mama Bear” is this walking-a-fine-line-between-angry-and-composed-mother side of me that rises up, out of protection of The Boy when someone or something is repeatedly threatening his happiness and well-being.

Mama Bear does not come out when someone looks at me funny.

Mama Bear does not come out when the teacher “forgets” to tell me that The Boy left his classroom without permission twice in one day.

Mama Bear does not come out when the ex forgets to call, again.

Because I am not Mama Bear. And Mama Bear is less effective if it is the face you wear with the people you deal with on a daily basis. If you ARE Mama Bear, you are being written off as crazy, I guarantee it. “That crazy mom emailed me again, today…” “Crazy Mom is in the main office, watch out!” “Take everything That Crazy Mom says with a grain of salt…”

I follow another autism mom blogger’s facebook page, and she posted about her son’s first day riding the bus today. A little later, there had apparently been a snafu, because her son had been found “wandering the halls”. She said she was livid, and the great majority of the commenters were calling “Off with their heads!” I would never take a situation like this lightly, but I put in my two cents, calling for calm, pointing out that everyone makes mistakes, and got called out for my response by another commenter: “Things should NEVER go wrong with our children.”

Listen, people will make mistakes with our kids. I make mistakes with my kid! That’s how I learn, that’s how he learns. Yes, it’s scary when a little one is wandering the halls of school, not knowing where to go because someone screwed up the procedure for drop-off. And a phone call and/or even a meeting would be in order here to straighten out the situation ASAP. But do you think that little one might be less scared in a similar situation later on because it has already happened to him and everything turned out OK? If this happened two or three times, why yes, I would be livid. But living your life in a constant mode of battle-readiness, expecting perfection from school staff, and wearing that Mama Bear mask whenever you come across someone who looks at you the wrong way is no way to live, and it’s not a good model for our kids.

Amidst the Angst, I’m Really Thankful

Posted on September 5, 2013 by simpleijustdo

I know lots of people do “Thankful Thursday” posts, but I wanted to pause in my week-long rant/neurosis/panic attack about The Boy and our concerns with his current schooling situation to express how really lucky I am.

I’m so happy that we’ve moved. We have a very, very nice home that is paid for – no mortgage, no rent. This has allowed me to avoid panicking about still being virtually unemployed.
I’m so happy to be married to my husband. We waited a long time to be together on a daily basis, and now that we are, I still have to pinch myself from time to time.
I’m so grateful to have a partner to help me with the daily routine. He’s still learning about The Boy, especially now that we are all in such close proximity, but it’s not all on me anymore, which was a heavy burden to bear.
I’m so happy that we are so close to my parents. They are some of my closest friends on the planet, and having them 15 minutes away is something I haven’t had in a long, long time (and The Boy hasn’t ever had!).
I’m thankful that I have enough in the bank to lean on until I start getting paid regularly, and until I find a more meaningful, full-time position.
I’m really grateful that I have the time, background, and fortitude to do what’s apparently necessary for my son’s education.
I’m so thankful that my son had such a good education up north, which has shown us that he is capable, and that he has this solid foundation on which to build in middle and high school.
I’m happy that my son is apparently enjoying middle school, even if he isn’t getting everything out of it that he could be right now.
I’m really glad to have a fledgling support network down here: even though I don’t know many people, I have hooked up with some great people in our local Autism Society chapter who have been so helpful to answer questions and offer support.
And I am so thankful for my boy. He makes me laugh just about every day, even on the days he makes my head spin, and my eyes roll. I don’t know where I’d be without him!

Deep breath. I have a lot to be thankful for! 😀

What I’m Up To

Posted on August 29, 2013 by simpleijustdo

I have an “orientation” at Michael’s (the craft store) tomorrow to become an official employee, so I can start teaching scrapbooking classes. The pay isn’t as good as I anticipated, but I hope it will supplement my other part-time job…

tutoring! So far, I kinda sorta have one student (his mom and I have a game plan, but not a schedule yet), and he has autism – yay! Suffice it to say I could make up to $30 a week all told!! I know, exciting, right? But in about three weeks, once I can get my classes set up and advertised, and parents start to realize their kids need help, I should get some more hours at Michael’s, and I should get some more tutoring students. And it might be enough to make my car payment…

I’m waiting to hear back from the county about whether or not we qualify for The Boy to be on the state-provided health insurance program. Any day now… Nah. More like 30 days from now… Hopefully.

I’m going to be volunteering and helping The Boy’s band director out a couple of days a week. I also told him I could come in when he has a substitute. He thought I might want to be the substitute, and I assured him I did not. If I’m a volunteer, I can get away with a lot more… Heh, heh, heh…

I’m trying to work with The Boy’s school to get his services ironed out. They are NOT right, and I think they have had very limited experience with kids with autism. More on that in another post, but suffice it to say that right now, I’m reading some books from Wrightslaw about Special Education Law. Just in case.

I’m helping my hubby with some of his big projects. We joke that I don’t get paid, but when he makes money, I make money, and this allows him to get done quicker, which means more work, which means more money… you get the picture. Plus I get to spend the day with him, which is nice about 99% of the time 😉

I get to drop off and pick up my kid right from school – no daycare! I’ve never been able to do this, and it’s pretty cool.

So in summation, I don’t have a ton of money coming in, and my insurance runs out this week. But for the first time in about 17 years, I’m able to give thought and energy to my own kid and my own family, and I have the time to do it, and do it well.

Why I Love Field Day

Posted on June 7, 2013 by simpleijustdo

Most teachers aren’t very fond of field day. In fact, in my district it was even the source of a fierce battle about prep time awhile back. But I love it. At least I love it when my kid has it.

His field day was last week. I think he even chose a special “athletic-themed” outfit for that day, choosing to wear his T-shirt from the special needs baseball camp he has been to the past two summers. It doesn’t hurt that he loves his gym teacher, and wants to be one when he grows up.

His school gives each kid a long ticket-type thing that lists the various activities, that get punched as they visit the stations, and they can also be recognized on the ticket for showing good sportsmanship (or having an “oops!” moment, but The Boy has never earned an “oops!” he is proud to tell me).

Here’s why I love it so much: I often have no clue about what happens at school, because he just chooses not to tell me (thank goodness his ASD teacher sends home a daily communication log to let me know about highlights, or I’d be completely in the dark!). But on field day, we have a nice long conversation. When I pick The Boy up from Kids Club, and with the ticket in hand, I ask him about each one with a punch next to it. I ask him to explain how it works, and whether or not he liked it (he always likes them all). And he does tell me — at length! I have a guide that tells me what to ask him about his day, and I do, and he responds. That’s a big thing for us. And I enjoy it a great deal.

Peace of Mind

Posted on March 6, 2013 by simpleijustdo

One of the things that I have been most nervous about the move, OK, more like THE ONE THING that has given me a good bit of anxiety is the program for The Boy in the state/county/school where we will be. You just never know what you are walking into, even with a diagnosis and an IEP in hand. You may remember that I had spoken with someone who worked in a county a good bit away from where we were who said they didn’t have a resource room to speak of, and didn’t have any aides in the rooms with the kids. Considering that The Boy spends a good amount in his resource room, I got a bit panicky about what I was going to be subjecting him to.

I had put out some feelers through some contacts with the state Autism Society, and hadn’t really been able to connect with anyone, until this weekend. I finally got in contact with some parents who run the local chapter, and was able to speak on the phone with one lady who was able to give me some insight, at least into her experience. She had also moved into the area a year and a half ago, and has a son that is very close in age to The Boy. She was able to allay my fears a bit, and let me know about how much their little chapter has been accomplishing. Not only was I relieved, but I also began to get a little excited. Here is a group that is actually making positive change in the community for kids on the spectrum, and providing opportunities, and even a summer day camp! YES! Exactly what I was hoping for.

Not to mention that this group is a way for us to meet people like us, which will be one of the most difficult parts of the transition for both The Boy and I, making new friends. I often complain about talking to people on the phone, but this time, I am sooo glad I did.

Most Important

Posted on February 15, 2013 by simpleijustdo

The Passage of Time (Photo credit: ToniVC)

The Boy and I are first to the school every single day, with the exception of the lone morning custodian. He lets us in the door shortly after 7am, and we wait, often for at least 10 minutes, until other faces arrive, children and their parents, but rarely the same ones. And then around 7:15am, the Kids Club staff arrive.

There have been a couple of times when a parent has come in, assumed I worked for Kids Club, and promptly left their children with a quick peck on the cheek. Nevermind my big puffy coat and scarf… Or there are times when a parent comes in, constantly looking at his/her watch, declaring over and over how they have to get to work (as if I don’t). Today, a woman actually pecked her kids and told them she was going to go wait by the door, because she had to “skedaddle”… Yep, that 15 seconds from the gym to the parking lot door is really going to make a difference, Lady.

When I overhear things like this, I often look at the kids, who look embarrassed and sad. All of these parents are sending a message, with their words, actions and body language that no kid could miss — work is more important.

There are times when we have a rough morning, and yes it’s irritating to have to text my boss and tell him I am running late, but he’s my kid. There is nothing on this planet more important than him. And if I have to be a few minutes late to work, so be it.

I hope these parents get a clue before their children are grown and gone, but realistically how will they learn?

Schools and the “Quick-Fix” Solution

Posted on February 4, 2013 by simpleijustdo

I don’t often write about school, neither mine nor The Boy’s because it puts me in a precarious position. And I just don’t want to go there. Yet.

But there is one thing that I think I can safely generalize about public school systems today, and that is the preponderance of “band-aids”: quick-fix measures to address very real, very big problems. These “measures” are often implemented in a hurried fashion, without much forethought, and end up being a patch-as-you-go solution which doesn’t really work for anyone, but is there so that we can say we have it.

For instance, after Newtown, The Boy’s school realized that in the morning and afternoons, they were allowing parents (and virtually anyone) unfettered access to the school due to drop-off and pick-up for Kids Club (but also clubs and other sponsored events after hours). The day following Newtown, the door was locked in the morning. No letter home, no signs on the door. Nothing. Because we are almost always first to school, we had to pound on the door to get the custodian to come and open it up for us. Later that same week was The Boy’s school band concert, held during the school day, and every single parent attending the concert had to be buzzed in, and had to report to the office, sign in, and get a visitors badge. That’s about 100 people!

some old fire alarm bells by hpeguk from flickr

some old fire alarm bells (by hpeguk via flickr)

After break, they had installed a new bell to push, which rings in the gym so that a kids club worker can answer the door. Can you imagine how often those people are running back and forth (as opposed to, you know, supervising children)? And what if the person is ringing to be let in for some club other than kids club? Do they let them in if they don’t recognize them? And what if there is an event going on in the gym, like a parent meeting, concert, or girls scout ceremony, and that bell rings? Not to mention that the bell is loud, and rings like an old fashioned fire alarm… Yup. A fire alarm sound for all of those kids on the spectrum. Going off about every 4 minutes. How nice.

And the response to people who ask these questions is, “We’re working on it.”

I get it. You want to make your school safe, and you want to make it safe now (although, why this wasn’t considered after Columbine, I don’t know). Except that a little notification, and some planning and forethought (and maybe a little money spent) upfront would go a lot further than a piecemeal, thoughtless plan like this, that is still being “worked on”.

This is where schools look unprofessional, because it really is. And this is only an example of the many “band-aids” I witness myself and hear about from others like this, almost on a daily basis. I know educators are short on time and money, but those are really just excuses. There is no sense in not doing something right the first time, from the get-go, with a carefully thought out plan. And there really is no excuse.