Tag Archives: Special Needs

The Math Muddle Update

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The Senate Committee has sent the bill to the Senate, but has modified it to allow students the choice of taking integrated math classes, or a more traditional set of discrete math classes. They have also re-instituted the provisions which allow students with disabilities to substitute classes in order to earn a diploma.

We, personally, have dodged a bullet, but the teachers may now be left scrambling, trying to figure out how to offer completely different classes concurrently, and the senate committee members comments were basically summed up as, “suck it up – you’re teachers and you can figure it out.”

Why, oh why do they meddle in a profession about which they have no clue? Do they issue mandates on how medical professionals examine their patients? Do they issue bills requiring dentists to fill cavities according to a proscribed set of guidelines? Nope, just the educators get the benefit of their omniscient wisdom.

It is no wonder we parents of special needs parents have chronic stress and anxiety, when issues like this face our kiddos. When their very futures hang on the whims of pompous know-it-alls who have the power to change policy at a moments notice. I avoid being political here, but voting is necessary. We need to ensure that level heads prevail with our children’s futures on the line. Vote out the bad, and vote in the good. That is our only power, and it’s on us if we don’t use it, or if we throw it away.

Today is the Day

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Today is The Boy’s last day of 8th grade, of middle school, of being anything but a teenager. He’s excited. I’m excited. We’re all excited. And a little wistful, too. Even The Boy exclaims, “How did we get here?” and “How did this happen?” I tell him time flies, and if you blink, you miss it. I tell him all those old cliches, those that have been around so long they must be true. It sure feels that way.

Where is the 5 pound 6 ounce baby I was holding in my arms yesterday?

Where is the toddler who got away from me in the department store and hid in the middle of a clothes rack?

Where is the preschooler who couldn’t wait for the water to warm up to get into the small pool we had bought, and whose smiling lips turned blue?

Where is the 2nd grader who kicked his classmates?

Where is the 4th grader who sang the Star Spangled Banner at the high school football game with his choir?

Where is my 7th grader who began to have crushes on girls?

Who is this extra man in my house who is taller than me, requires shaving at regular intervals, and has hands and feet bigger than his dad’s? Who can barely fit on the couch if he stretches out on it? Who “practices” driving every time we get into the car?

Ah, yes. He’s my son, even though I can’t possibly be old enough for it to be true. My son. And me over here? The one with a bit of dust in her eye? I’m one proud mom.

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Battle over Band

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In a week, I’ll meet with the high school band director and the high school special education teacher, and hopefully walk away with a plan for The Boy to be able to continue participating in band.

If you recall, after missing a meeting with me, the band director told me at orientation that he didn’t think The Boy should be in marching band, but there was a possibility that concert band in the spring could work out for him.

When I mentioned this to the Director of Special Ed for the district, a phone call was made to the high school principal to discuss it, apparently. Why? Because it is against the law to deny a special education student access to curricular, extra-curricular or co-curricular programs.  Which law? IDEA is pretty explicit, and in fact, if The Boy wanted to, he should be afforded all supports for the extra- and/or co-curricular programs that he is afforded in his regular classes (i.e. if he has an aide in class, then he should have an aide on the field in marching band, helping him learn his drill).

In fact, marching bands across the country have embraced their roll as an opportunity for students with disabilities. Kids with autism, kids with CP, kids in wheelchairs, and there is even an entire drum corps made up of kids with special needs.

Yet, this guy thinks he can tell my kid no. Or rather, he thought he could until I squeaked.

Now, will The Boy be up for all of the summer, evening, and weekend rehearsals that often entail grueling hours in the sun? Probably not. Will he be able to learn an entire drill and carry a sousaphone that whole time? Probably not. But there has to be a place for kids like mine, and if there isn’t one, we’ll create it.

You can’t just say no, sorryboutchya. And why would you?

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Middle School Reflections

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We went to lunch at the beach on Saturday after cleaning up all the chunks of drywall left by the drywall hangers at the new house. We ate outside at a picnic table, and were talking about The Boy being almost done with middle school. The Man and I both agreed that not too many people would like to re-live middle school, and that he had much to look forward to in high school.

“Why don’t people want to go back to middle school?” The Boy asked.

“Well, I can tell you that kids were kind of mean to me when I was in middle school,” I said. “I don’t have very many good memories.”

“And I don’t have too many memories of it at all,” The Man said. “Nothing really great happened.”

The Boy took a moment, and then said, “I think it’s different now.”

“It is?” I asked carefully.

“The kids at my school are nice. There aren’t too many mean ones. I have good memories of middle school,” he said.

I touched The Man’s hand and gave him a look. He raised his eyebrows back at me.

That is something that every special needs parent wants to hear. That her child has good memories of middle school, and judges his classmates to be nice people.

Just a bit of dust in my eye…

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Acceptance Begins with Our Own

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I have a friend with a young daughter on the spectrum. She regularly posts on FaceBook about her struggles with her daughter, and how she loves her daughter but hates autism. She complains that they often have to leave school events early, and just once she wished she could stay through a whole event and watch all of her children.

I admit that I only have one, and he is relatively high functioning.

I also remember feeling that way.

And I was a single mom.

(I know not everyone will agree with me, as this is a major point of contention within the autism community, and the line drawn seems to coincide with functioning levels. Autism is a struggle for most, and parents will spend our whole lives trying to figure our kiddos out. This opinion is based on my own experiences.)

At some point, though, there was a shift for me. The more “battles” you have to choose whether or not it’s worth it to fight, you begin to see hypocrisy all around you. You begin to question the structure and rules in our society, and how arbitrary they seem. Why do you have to keep your shoes on during a play? Is it really that big a deal if someone wears the same shirt everyday, as long as it’s clean (I’m looking at you, Troy Landry)? Do I really have to worry so much about the guy with the white beard being approached by my child who thinks he’s Santa?

You begin to think about the fundamental difference between children and adults, and how boring we all get. How we lose that sense of creativity and wonder. And how freeing it can be to not have to worry about all of that stuff.

My friend made a comment in her last post about the fact that her daughter needs to adjust to the world, and not the other way around. I respectfully disagree. Yes, we have to teach them to adapt to the best of our (and their) abilities. But. There are enough of us to really make a positive change here, and we have to stop being so hard on our kiddos. We have to start being harder on this cold, dead world that has a vice grip on its arbitrary social structures and rules.

My friend says she’s tired of it (autism), and that she’s exhausted. The fact is, my friend’s daughter will never lose her autism, but the rest of us neurotypicals only need a shift in perspective to allow her to be who she is.

And we need to accept our own kiddos as they are if we ever hope the world to accept them, too.

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Persuasive Writing

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A new strategy that the school has been using since we met for a crisis intervention plan, has been to allow The Boy to send me an email when he is overwhelmed. He can go to several designated spots, hop on the computer and email me about what’s going on or what’s bothering him.

Usually, it entails a couple of emails back and forth about someone being absent. I encourage him to stick out the day, and he does.

Monday, the conversation was a bit more lengthy:

The Boy: I need you to come pick me up from school because I got sick on the bus on Saturday and then (the band director) told me to take Monday off and also, (one of his friends) and (his TA) took today off as well. I don’t want to get the other students and teachers sick. Especially (his social studies teacher) because he missed way too much school within the past 3 months. I even thought (another friend) was out too along with (the first friend) and (his TA). That is until I saw her at her locker at the end of class. I might tell her later that I may not be able to be in Social studies. I also feel really exhausted from Saturday and out of shape and I feel like I need rest. and If you can’t come, maybe Grammy and Poppy can pick me up in the black saturn vue.

Me: I know there are a couple of people absent, but your friends would miss you if you left. I need you to try to stick it out, ok?

The Boy: I can’t just stay here. If I do, I am a little worried that I might get more people sick and then they might miss school tomorrow and besides, (the band director) told me to take today off on Saturday. It’s nothing personal. He just can’t have me getting his other band students sick. I only air high-fived and pretend hugged the girls on Saturday because I didn’t want them to miss school today, although one of them already did and that is (the first friend). So now  I feel like I need to take the rest of this day off and then come back tomorrow, also let Grammy know (the band director) told me to take this day off. and Hopefully (his TA) (and the first friend) will be back tomorrow too.

Me: I’m not sure where (his TA) is but I would guess she’ll be back tomorrow. (The first friend’s) family extended her trip in DC, so if she is not back tomorrow, she will probably be on Wednesday, but she isn’t sick.  You don’t have too much longer, Bubba. See if you can stick it out. I know it’s tough, but don’t forget that if you can last the day, Grammy is taking you to Brrberry!

There were a few more emails back and forth, and then he went back to class. As I’m writing this post, I just got another email about how only one person came back today. But the strategy seems to be working, and I was tickled to see the quality of the language, the writing, and the persuasion he used. And writing is supposed to be one of his deficits! I wonder how far he could get with a little inspired teaching!

Traveling with The Boy

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Tomorrow, The Boy and I depart on a school trip to Washington DC with his band. It is a short trip – only an overnight stay, with a ridiculously early report time tomorrow (let’s hope they haven’t changed that, too), and a ridiculously late return time on Saturday evening, but those two days should be packed with fun and excitement. As long as the weather doesn’t interfere (which it might), and as long as The Boy and I can handle our anxieties about changes to the itinerary, and not being in control of our activities…

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My anxieties stem from my former life as a band director, having taken groups on trips, and the amount of planning and forethought that should go into it. And the amount of communication with the chaperones. All of that should be happening, but as of today, I have no idea for what or whom I will be responsible. I don’t know with whom The Boy is rooming. I don’t know how seating will work on the bus. There’s a whole lot I don’t know, and that makes me anxious.

I’m anxious, too, about The Boy rooming with some other kids (how many? I don’t know…), and if he will be able to handle it. If not, he can always come to my room (I know that I’m supposed to have a single), and if they don’t like it, they can shove it where the sun don’t shine. I emailed the teacher on Tuesday just to make sure this was a fallback option, and haven’t heard back, so I take that as a yes.

The Boy is excited. He gets to travel and see some things, which he genuinely enjoys. He gets to (hopefully) hang out with some of his friends. But I hope he can roll with changes, and maybe not being able to sit by whom he would like, and maybe being put in a group of boys to sightsee, rather than his friends who are girls…

Keep your fingers crossed for us. I think we will have a good time, and I just hope we can keep our anxieties (mostly mine) at bay.

And Then

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Yesterday, I wrote about the huge meltdown The Boy had on Thursday night.

And then…

On Friday, I was a mess. After the boys left in the morning, I took a deep breath and then began to cry. I journaled, because writing usually helps. I cried off and on the whole time I was getting ready for work. And I can usually talk myself down, saying, “Ok, you have to go to work now, and you can’t cry at work, so time is up. Dry your tears, and let’s get going.” That did not work on Friday, and there were a couple of moments I had to use a paper towel on my desk to wipe my tears. I texted a friend about how awful I felt.

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It’s like the hangover after a binge. It’s inevitable, you can’t control it, and you really can’t make it go away until it’s ready to go away.

This is why people say that parenting a chid on the spectrum is like having PTSD. I think in my case, it’s more accurate likening it to chronic stress. Either way, it’s not a good thing, and we who deal with it have to be real careful not to ignore it.

To myself and others who deal with this kind of thing:

  1. Take the day off, if you can. It adds more stress to try to be “on” for others and shut those emotions out, and if you can give yourself a day to recover and process, then please do it.
  2. If you can’t take “the day after” off work, at least take it easy, and find something to take your mind off the meltdown. Replaying it over and over in your mind doesn’t usually do much good.
  3. Pat yourself on the back for doing the best you could under the circumstances. You and I both know people who would not be able to do what we do.
  4. Plan some sort of treat for yourself during the day. Something to look forward to, and something positive.
  5. When you have time, express it somehow. Journal, paint, talk to loved ones and friends who get it. Write a letter to yourself and send it, or burn it. Do something with all of that. If you don’t do this, it will fester.
  6. Make sure you are taking time for yourself somehow in your daily life. I know how difficult it can be, but even if you lock yourself in the bathroom for half an hour a week to read magazines, you just have to find some time for yourself to get away from the relentless needs of your child. I think this step helps us find strength when the big ones hit, too.

This is just my advice, from my experience. It’s not an exhaustive list, and frankly, I’m working on many of these, too. Meltdowns are difficult for the kiddo, and the parents, and aftershocks can be felt for days, weeks, and months afterwards. They’re not going going to go away, but we can mitigate the effects with a plan in place. That’s what we autism parents are best at, right? Planning? 😉

He Melted

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Last Sunday, I found a flyer in The Boy’s backpack that said he had a performance this past Thursday, at the orientation for incoming 6th graders. I was a little annoyed at the lack of advance notice, but we rolled with it. I made sure his band shirt was clean, cancelled my Thursday lesson, and made arrangements for transporting his tuba.

Thursday evening came, and I picked The Boy up at Grammy’s. We rode out to his school, and I reminded him that it was ok if he didn’t see all of his friends after the concert (which has been a big source of anxiety and mini-meltdowns in the parking lot after events like this all year). He was anxious about it, but at least we were talking about it. When we got to the school, there were curiously no parking spots, so we parked a ways away, and headed toward the gym. As we got closer, I could hear drums, and I knew we were in trouble. Sure enough, we walked in, and his band was already playing. We waited for the song to be over, and I tried to get him set up behind the band, in the percussion section, quickly so that he could play along with at least the next song. He wasn’t having it, and knocked his binder to the floor. He was angry and feeling left out, and rightfully so. “I missed it! They played without me!” I told him I must have read the flyer wrong, and asked if he wanted to leave.

After the performance, the principal released the 5th grade families to tour the building on their own, and The Boy just lost it. He began walking quickly, shoving people out of his way, giving me the finger, saying he was going to throw his tuba at his band director and cut off his head. I could do nothing but follow and apologize to the people he was shoving out of the way. Apparently, at one point I got too close, because he grabbed me by the neck and shoved me against some bleachers, knocking my glasses off. I picked them up and continued after him. After much walking around the school, and a few hugs from band friends he saw, we headed back to the gym, where he did pick up his tuba and threw it across the gym floor towards his teacher, who was speaking with a woman at the time, and it hit her in the ankles. Again I apologized, and attempted to get The Boy to sit. He did, and the band director approached, hoping to assist me in calming him down. At this point, he revealed that it was, indeed, his fault. That the time had changed and he had announced it in class, but failed to let me know.

The Boy was still agitated, and got up to leave the gym again. But this time, it was for the parking lot. He was calming, and we were heading to the car. I had called The Man at some point for help, and he was on his way, although I’m not sure what kind of help I was looking for. I began to cry. The Boy asked why, and I said, “Because I hate to see you this way.”

We ended up leaving his tuba and music there – let them deal with it for now, and headed home where it took about an hour for The Boy to calm down. By then, he was ready for pizza, and even played my trumpet a bit.

This didn’t have to happen. I’ve told school personnel, including the band director for multiple years that The Boy cannot reiterate to me what is said at school. Apparently saying it ad infinitum is not sufficient. But the band director learned from this. He apologized three times that night (and not once did I say it was “ok”), and called on Friday to express his apology again. I can forgive a young teacher who knows he messed up big time, if it looks like he learned from it. I cannot forgive the principal and assistant principal who initiated the change, made no accommodation for affected students (how many robocalls do I get from the school per week, and this wasn’t on any of them?), and didn’t lift a finger to do a thing on Thursday night. In any school, the buck stops with the principal, and this woman and I are like oil and water. She is not my friend, nor is she a friend to any special needs student. And she quite likely will be the subject of a letter to the Superintendent before the end of the year.

In any case, we are lucky that we do not experience these catastrophic meltdowns on a more frequent basis. The last time something like this happened, The Boy was about 10. The problem is, he is now almost 15 and bigger than me, and can apparently remove me as an obstacle (or at least attempt to). This scared The Man, but not me. It just is.

But it is a helpless feeling, and it is something that requires recovery.

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Kreed

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I follow several blogs and facebook pages related to autism, as I’m sure most of you do, as well. Maddox from Maddox’s Autism Chronicles cracks me up on an almost daily basis. Melon and Boy from Cat on a Trampoline are a constant source of amazement, and their mom can be relied on for some seriously hilarious writing. Casey from Conversations with Casey is such a joyful spirit, and his mom is quite funny, too. But I’m here to tell you about Kreed.

Kreed from Kreed’s World, a Complex Journey through Autism is a handsome young man who is nonverbal but has recently been able to communicate with the world through his device. His mom, Erin, also shows the world what living life in an autism household is really like, when your child with autism rages and self-harms at times. Kreed has a whole host of medical issues, and is currently in the hospital, and has been for quite awhile. He’s been in intense pain, and the doctors aren’t exactly sure how to treat it. He’s also suffering due to too much carbon dioxide in his system. In fact, he’s doing so poorly, they have had to put him in a medically induced coma. Erin’s post the other day about having to walk out of the room when her child’s eyes were pleading with her to save him from the doctors trying to put him out was gut-wrenching.

And I’ll be honest that I’ve been tempted sometimes to scroll on by and save myself the pain of watching what this boy and his family are going through. But I don’t. Because I’ve been in that helpless situation with a baby in the hospital, whose life hangs in the balance. As you sit in the waiting room knowing you are powerless to help your child, and not having a clue if he will survive the night or not.

And when you read this, think about this, experience this, you realize the divide in our community is quite petty. We need to be there to support each other every damn day. We need to read and hear each other’s stories, and not scroll away from the pain. We need to reach out to each other when we are in our darkest moments to lift each other up. Because watching your child suffer is horrible. Watching him suffer and feeling alone on this Earth is even worse.

I’m going to make and send Erin a card for Mother’s Day, because let’s face it – we all have more than one mom on this planet who have taught us deep lessons about living. If you would like to support Erin and Kreed, visit their page, like it, follow it, send them something, help with their medical bills – whatever you would like to do. But at the very least, send good, supportive positive thoughts their way. They need them.

Kreed’s address: 2208 Valley View Drive Woodland Park, CO 80863

 

Update: Kreed is back up and on his feet this week, spending time in the hospital playground and at the piano! So happy to see this!