You Need a Village

Yesterday was a classic Monday.  One little change to our routine made me about five minutes behind, which ended up with our leaving The Boy’s lunch on the counter, and my breakfast behind. The night before, we had also realized that we had left his swim trunks and rash guard at Grammy’s the previous Friday, which meant she had to throw them in the dryer so he could change into them when he arrived to her house.

Needless to say, Grammy made sure he had dry swim clothes and a full lunch for camp on Monday. Without her help, we would have encountered major interruption to the day, and in all probability, a meltdown to go with it (maybe two, if mine count).

While I don’t have a ton of friends down here to rely on, I do have my parents, and we need them. Everyone needs a village. When we lived up north, I relied on friends and The Boy’s tribe. There are times when you can’t do it all, when things fall through the cracks, and when you just need a damned break.

It’s a difficult thing to find and build your village, but it’s very necessary. I just don’t know how I could do it without some kind of support (besides my wonderful husband – sometimes even the two of us need additional hands!). And I don’t pretend it’s easy. The very nature of a special needs household may preclude being social with other families on any kind of a regular basis. But there is always a way. Don’t forget that I found Fantastic Babysitter (who is now one of our dearest family friends, and was/is a huge part of The Boy’s tribe) on Craigslist…

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Kreed

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!

Executive Functioning Skills Don’t Grow on Trees

Yesterday, the band director’s text alert system let me know that the permission slip for the upcoming band competition was coming home today, as well as something about a spring trip to Washington DC (…yikes…). When The Boy came home, I searched his backpack. Nothing. I replied to the band director’s text – “Could you email it to me?” he said he could.

Last week, the science teacher, from the same text alert system, let me know that progress reports were coming home. Looked in the backpack. Nothing.

And you know that there is still math work floating around in that thing, but I have been told that it is not homework, and that it will be worked on in school, so I don’t touch it.

And there goes last week’s reading log floating by…

_Oh, look, Honey, there's an executive functioning skill tree! Let's pick up some organization, working memory, and focus on the way home!This type of lack of organization has to do with executive functioning skills, often a deficit for kiddos on the spectrum, and many with ADHD. Without assistance and support, and regular lessons and routines to help them get their stuff together, they continue to not bring things home-bring the wrong things home-not turn stuff in.

Considering that The Boy is not verbal about school either, this becomes a real issue. Like when I find out about a band concert two nights before (do his pants even fit??). So, I kinda need to know about any kind of trip that is leaving the state.

Before his program was annihilated, he had an opportunity at the beginning and end of the day to check in with his ASD teacher to make sure he had what he needed, and turn in anything. It is evident that that support has not been replaced.

And I kinda need the staff to do something about this. Yesterday.

Ask Them to Put It In Writing

Our local chapter of the Autism Society has a regular monthly “Friends and Fun” party at the rec center of a local church where kiddos on the spectrum and their siblings can come and celebrate their birthdays with other kiddos in a non-judgmental setting. We set up some games like Twister, and there are ping pong tables, and then there are also some more structured games, but no one is forced to play, only encouraged. There are snacks, cupcakes, balloons, and even presents for the birthday kids. For kiddos who attend and are not celebrating a birthday, it’s a chance to get some social interaction on their own terms.

It’s also an opportunity for autism parents to meet and vent about issues their having, seek comfort from those who understand, and even advice. This past weekend, I struck up a conversation with a mom who I have come to respect because of her knowledge of special education law, and her commiseration with the state of our school district when it comes to autism awareness. Over the past couple of months, I have been sharing with her what I’ve found out about the transition to high school, and she is eager to hear because her son is about two years behind The Boy.

I told her that it seems like we have two choices, and that the IEP will not be the driving force behind The Boy’s education, as it should be. I told her that I’m not sure how far I would get fighting the system as it is without involving lawyers and spending money I don’t have.

She shared a tip that worked for her, and I thought I would share it with you, as well.

When her son transitioned from primary to elementary school, they attempted to put him in the resource room for the entire day, even though he had had success at the primary school with the proper supports. She knew he could handle general ed classes with continued support and that the school was making this decision based on staffing. She simply told them to put their rationale for their decision in writing. Quickly, the school changed their tune, and her son was placed in general ed classes with supports.

Why?

Because when they put something in writing, they have to be able to defend it legally and they couldn’t. This tip is brilliant. It may not work as well for big issues, but for the smaller ones, it most definitely will, especially when you are dealing with personnel who are not all that familiar with the law, but know enough that putting things in writing could potentially come back to bite them in the ass.

Add this tip to your bag of tricks and pass it on. It’s simple, but potentially powerful.

ed law 101

Things Are Looking Up

This morning, I start my new job. I am thrilled, relieved, and excited.

When we moved almost three years ago now, this is the type of job I was sure I would find. It just took me three years to get there. Great pay, great hours, benefits, only two other people in the office, and job duties I know I can handle. The other great part is that it is a salaried position, so my hours are flexible as long as I meet the expected number of hours. This is ideal for the parent of an autistic child who may have IEP meetings or random meltdown rescues to handle in the course of a year.

It is in a tax office, and so the next few months will be hectic. But I’ve done hectic, and I can handle it. I know I can, which lends credence to the idea that even if you aren’t in the best situation (my previous, high-stress job), you’re still learning.

This great news, along with the receipt of our building permits (finally!), and a report card for The Boy that has all 90s on it means I want to shout from the rooftops, and dance in my pajamas this morning. It’s one of those feelings you want to bottle for darker days.

As always, thank you all for your continued support. Good things come from being kind, looking out for each other, multitudes of patience, and support from a great community.

Modifications and Accommodations

A friend contacted me after dinner last night in a panic. Her son has just started 9th grade and has been failing math, in large part because he doesn’t understand the homework. He is on the spectrum, and is more than capable of handling academic work, given proper supports. But his homework hasn’t been modified, and I doubt the tests and quizzes have been either.

I don’t understand why teachers don’t do this.  Do they not realize that they have to? If a teacher saw a child in a wheelchair at the top of a staircase, unable to go downstairs, would they turn the other way and say, “That’s not my job, that’s the special ed teacher’s job”? Probably not, but because some of our kiddos on the spectrum “seem” capable, that instinct that all teachers are supposed to have to help children succeed just isn’t there? I just don’t understand.

simple modificationI still consider myself a teacher (especially with all of the modifications and accommodations I’ve been providing for my own son for the past two years), and helped my friend’s son via text. They would send me a picture of the problem, and I would set up a chart of the information to help him process it into an equation and send it back.  And guess what? They went from full-on meltdown mode to feeling much better about the math homework.

Now why in the world should this mom have to go on facebook, beg friends for help, and even offer to pay someone to help her boy with his work? No, I’m sorry. This falls in the realm of the duties of that math teacher.  She is failing at least one of her students.  That grade is not his, it is hers.  And if she can’t see that, someone needs to show her.

If you are a teacher, I strongly urge you to learn how to provide some basic modifications and accommodations (and while you’re at it, look into this thing called “Universal Design for Learning“). We’re supposed to help our students succeed, and if you are too tired or busy to only concentrate on the “normal” ones, you have a problem.

Desperation

A friend sent me a tragic news story about a father of a young man with autism, who had been caring for him alone, and had health problems of his own who had ended up taking the young man’s life before taking his own.

Sadly, this is not uncommon.

Murder and suicide are never the right path, but in order to prevent this type of thing from happening, and in order to make it extremely uncommon, you have to look at why it happened. And you have to look at it compassionately.  To condemn someone who is so desperate that they will end the life of someone they love dearly, as well as their own is too easy.  “There but for the grace of God, go I.”  The human mind is a mystery, and the only part of the human body that still has a stigma attached to its treatment.

This is not new.  Anyone who has read Thomas Hardy’s book Jude the Obscure, for example (or really any of Hardy’s books), knows that people have been making desperate choices when no other options are afforded for centuries. The problem we have to address is the lack of support and resources.

The 1 in 68 are rapidly becoming young adults aging out of a public school system that exits them with virtually nowhere to go.  Any programs or services available are largely hit or miss, or are so abominable, no one would place their child there for a minute.  If you’ve ever scanned the want-ads, you will often find job listings for personal care providers paying minimum wage.  What type of people do you think are attracted to a part-time minimum wage job?  Desperate people. And then we’re back to where we started.

We need a robust plan for our autism community that includes meaningful employment for all on the spectrum, adequate housing opportunities, and comprehensive assistance for families and caregivers who often suffer right along with their children due to lack of sleep, anxiety, and post-traumatic type symptoms. What we have now is not enough, and we cannot expect families and caregivers to endure without tragedies continuing to occur.

How many times will we read the same headlines before we do something?

Reader Highlight: Katrina

Katrina, who has commented here, is a blogging buddy of mine in our 31 Days Blog Challenge.  I’ve been following her for a little while, and she writes really well about being a special needs mom.  Her post, “The Truth About Being the Perfect Special Needs Parent” is one of her best.

In this post, she writes about the constant feeling of failure, like she isn’t being everything she can be for her kids.

I know this feeling.

Twice this summer, The Boy has had such magnificent, long-lasting meltdowns, that I was the one who ended up pacing the floors, unsure of what to do, unable to pull anything from my bag of tricks because it was completely empty.  I was the one moved to tears because I was tired, emotionally spent, and couldn’t take it for one more second.  I was the one who felt like such an astounding failure.

Katrina ends her post by writing about how important it is to lean on others, accept support, and let others be strong for us, even when it is the last thing we want to do.

I am lucky to have The Man, mind-reader that he is, who (during the second meltdown, as I was pacing, and probably looking like a kicked puppy) said, “You have done all you can do.  There is nothing left.  You are not a failure.”

I urge you to go read Kat’s blog, katscafe.org.  She gives a beautifully written voice to us special needs parents.