He Melted

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.

vintage-music-closed-shop

 

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I’m Always Learning About My Own Boy

At the end of each day, I head to Grammy’s to pick up The Boy.  This is usually a bit of a process involving agreeing on a number of minutes needed before getting ready to go, setting the timer, and then the addition of a couple of extra minutes, because the amount of time that has passed could not possibly be the amount of time we had agreed upon…  When all is said and done, we’re usually on our way in about a half hour, and it takes about 15 minutes to get home.

During this time, I ask about his day, and if I’m lucky, I’ll get some little snippets of information.  We joke and act silly, and generally try to make each other laugh.  Part of the reason The Boy is so relaxed is because he doesn’t have to worry about eye contact, I think.  Regardless, it’s the one time in the day where we have the most connection.

One of The Boy’s obsessions since the beginning of the school year (and the entrance of the new, nicer band director) has been articulating incorrectly on his tuba, and being obnoxiously silly about noises that are not desirable in the band room.  As a former band director, it drives me insane, but I’m doing my best to be patient while we ride this particular obsession out.  When we take this time to be silly together in the car, inevitably, the silliness involves these noises that he thinks are hilarious. During of all of this hilarity today, he was pretending to be the band director, and asked me to “play” a C.  I sang a note (that I thought might be a C), and he very seriously said, “No.  That’s not a C.” It reminded me of when he would use that tone to tell me not to sing (along with the radio), when he was a toddler.  “Don’t sing, Mom.”

Perfect PitchI have a pretty good sense of relative pitch, after almost 20 years doing the band gig.  I was fairly certain that I was at least close to a C when I sang. Then I remembered I have a tuning app on my phone.  I pulled it out, and sure enough, I was wrong.  Then I turned it around on him – if he knew it was wrong, could he sing a pitch if I asked him? “Sing an Eb,” I told him.  He did, in his puberty-addled voice, and I put the phone to my ear and checked… It was right.  “G,” I told him, and he did it.  I tested him several times, and he was able to pick these notes right out of the air!  “Why are you looking at me like that?” he finally asked.  “Because you are blowing my mind!” I said.

When we got home, we sat down to the piano and repeated the process. As a result, I am fairly certain The Boy has perfect pitch, which is an extremely rare auditory skill.  I had always known he had a great sense of music, and a damn-good sense of relative pitch.  I even wondered at a few points over the years if it was something more, but never until today have I been this close to certain.

It may amount to nothing.  It may not be something of which he ever wants to take advantage.  But if he does, I want to nurture it if I can, even more than I have his general music ability.  I’m amazed at the depth of The Boy’s talents, and I’m amazed at how much I am still learning about him. He’s simply amazing.

6 Basics I Sometimes Forget from Autism 101

One of the hardest parts of being an autism parent, especially in the beginning is deciphering your kid and his behavior.  Why in the world is he doing that?  What is he so angry about?  Is this a tantrum or a meltdown? Why can’t I get him to (insert any activity here)?

As you grow as a unit, you begin to understand more about how your kid works. You get better at predicting behaviors, and identifying triggers (more on that in another post this week). Your skills and knowledge increase exponentially.

Autism101And yet, as I’ve written before, you will always have your moments of complete and utter dumbfoundedness (is that a word? If it wasn’t, it is now), and better yet, you forget sometimes about stuff I like to call “Autism 101”.

So what are the “Autism 101” basics I forget from time to time?

  1. One of the biggest culprits for negative behaviors is a virus.  I will get phone calls or emails from the school, out of the blue about work refusal from The Boy, or escaping from class, or any number of negative behaviors.  My first instinct is still defensive, i.e. “What did you (the teacher or aide) do to trigger his behavior?”.  And that is simply because he is a good kid, and doesn’t act out.  He hates displeasing me or The Man or his grandparents, and when this behavior happens, there’s a reason.  What I often forget is that a common reason has nothing to do with action and reaction, and everything to do with cold and flu.  Viruses do a number on his system, and much like a computer, he starts acting very strangely indeed.
  2. Another big culprit for negative behavior is (forgive me) an upcoming bowl movement.  You see, The Boy had surgery as an infant, in which they removed part of his intestine, and moved some things around in there.  As a result, well… let’s just say that if there was a super-duty (heh, heh… I said “doody”) wide-throated toilet, we’d have it.  And much like the wonder of childbirth, I really don’t understand the physics of how something so big can come out of something so small.  As a result, poops are not regular, nor are they fun.  And I have found that sometimes they are preceded by some really wonky behavior.
  3. He may say he’s not hungry, but give The Boy a snack because hungry turns into negative behavior. This is one instance where trying to respect your child’s independence, and listen to their voice and burgeoning self-advocacy does not work.  If you don’t give him anything, he will become even more absorbed in what he is doing until his body forces him to react to the hunger, and it’s rarely in a good way.
  4. The Boy is verbal, but still lacks language.  The Boy loves words, finds words funny and punny, and is able to express and receive language.  He is in a high-functioning autism pilot program, even though he would not have been classified as having Asperger’s Syndrome.  He had language delays as a toddler – I had to teach him language with flashcards, and he went to speech therapy twice a week for a long time.  He does really well now, but he still lacks language to express himself appropriately sometimes.  There are situations where he cannot find words to say what he wants to say, so he leads me to the right guess.  But sometimes I can’t guess, and I have to remember that even though he has high functioning language skills, they were hard-earned, and this is not natural for him.
  5. Pictures, pictures, pictures, pictures, pictures. Sometimes I will ask myself, “Why is he not understanding this?” and I have a “Doh!” moment and think, “Maybe because you just told him about it, and didn’t use any pictures, dummy!” There’s a reason well-respected autism professionals talk about picture schedules until they are blue in the face – it’s because they work.  Our kiddos are generally very visual learners, and if something just isn’t sinking in, a video or picture will usually do the trick.
  6. Intrinsic Motivation just isn’t it.  Rewards and motivators are king.  And I’ll be honest – I don’t forget this one (as sometimes The Boy’s teachers at school seem to), but I do forget to have a ready supply of rewards and motivators in my bag of tricks.  When I don’t have something at the ready, I sometimes resort to taking away privileges, which doesn’t work nearly as well. More on this in the upcoming behaviors and triggers post…

How is it possible to forget this basic stuff that one should know after 13 years of experience? Because there are peaks and valleys to child development, and even bigger peaks and valleys in the development of a young person on the spectrum (in my personal experience).  There’s a lot of backtracking, having to recoup skills that were considered mastered, and as they grow more independent, you forget they are still kids, still learning.

There is no mastering of parenting, I’m convinced. It’s Murphy’s Law – once you think you know everything, you will be quickly shown that you do not.

Making Money on Autism

There are lots of autism bloggers, and lots of single moms with kiddos on the spectrum. Lots of us have learned so much from experience, and lots of us want to share that because we know how hard it can be.  And there a few of us who have the ability to make a few bucks doing this.

Way back when I started this blog, one of the things that inspired me was the inability to find existing social stories online that weren’t for sale.  I was tired of being nickel-and-dimed for every little resource I needed for The Boy.  Others had experienced just what we were going through, and someone had to have a social story already written, so that I wouldn’t have to re-create the wheel every time, but they were all for sale. And money is hard to come by when your paying for uninsured therapies, prescriptions, diapers or your 5 year old… It’s tough.

I have long considered trying to take this blog to the next level, and maybe “go pro” which means trying to attract companies to advertise here. Most bloggers do this, and I don’t see it as trying to make money off of other autism or special needs parents.  Advertising is everywhere, and I don’t think anyone would see this as a blogger trying to take advantage of her audience.

There are other bloggers that sell stuff on their sites, as well.  And I think we have to be very careful when we head in that direction.  T-shirts are one thing.  Resources are another.  Trust me – I understand the sentiment behind it – when you work hard to create something, you have a tendency to want to protect it, and while you want to share it with the world, you feel you deserve something in return.  I get it.  But we cannot forget that person on the other end, spending money on therapy, weighted blankets, chewies, and special gluten-free ingredients.  Our community needs to remain one in which we share resources at little cost, and respect each other’s struggles. If we forget that, we’ve lost our way.

The autism community needs to stick together

5 Ways to Support the Newly Diagnosed

finding the path after diagnosis of autismI often think back to the day we got The Boy’s diagnosis.  The ex and I went our separate ways – he went back to work, and I drove to a nearby Kmart parking lot to process (i.e. cry my eyes out, hyperventilate, ask myself over and over “What are we going to do?” and eventually call a close friend to talk me through it.  Thank God for her.) The psychologist we had seen had written “Autism Society of America” on the back of a business card, suggested we look them up, and said goodbye.

Once I collected myself, I still didn’t know what I needed, or what our next steps were.  As I think most do, I went to the internet.  Unfortunately, the internet is a big place, and I’m not sure the right tools and support are readily accessible to someone doing their first post-diagnosis search.

So how can we support parents who are new to this whole kit and caboodle?

1.  Support local nonprofits that directly help our kiddos.  The more those groups are supported, the more visible they can be in the community, and the more likely it will be that someone hearing that diagnosis for the first time will recognize the group as a resource they can use.  This means supporting them with money, with attendance at events and workshops, and with your volunteer hours.  Yes, volunteer hours.  It may seem like we have the perfect excuse not to volunteer, but we have to give back if only to our own community – if we don’t, who will?

2.  Make your presence known at the school.  Kids with a new diagnosis will have parents with questions.  They will most likely be asking those questions at the school. If you have maintained a good relationship with staff while dealing with the school, they may just see you as a resource for parents who are new to this whole shindig, and may pass your name along.  Or if there is a group of you parents, even a social group, that goes for you, too.  Schools really do want to help, and may attempt to connect someone with questions to those who may have answers (that’s you!).

3.  Use social media to post “the good stuff” to your friends, and encourage them to share it.  Parents who have questions will inevitably be some of your friends, or friends of friends, and so on.  The more “the good stuff” gets shared and posted, the more people will see it, the more it will be found by those searching for it.  That’s how the interwebs works for good.

4.  When they come to your group, be welcoming.  You may think this goes without saying, but groups are a funny thing.  Sometimes, a group can get an attitude with newbies, and can be judgmental. You don’t have to like everyone who comes to the group for help and support, but the fact remains they need help (and they may need more help than others!).

5.  Respect the process.  People react differently to the news of a diagnosis.  Some will immediately seek out others for help, while others will remain private and need to sort through things on their own.  Don’t be pushy.  Allow them to come to terms with it, and just be a friend.  Just knowing there are others who are going through what you are going through goes a long way, especially at the beginning.

Special needs parents have many, many roles.  One of them should be “guide to others who have just joined the group.”  What would you add to this list?

An Open Letter to the Mom in the Doctor’s Office Today

I overheard your friend (daughter? niece?) reading to you from that questionnaire today, and I took notice because of all of your “no” responses. I immediately remembered those soul-crushing, developmental, yes or no questions, the mix of defensiveness and hopelessness when you begin to understand just how far behind your little one is.

“Does your child point to an item s/he wants? Does your child turn pages of a book independently? Does your child say three words?…”

And on, and on, and on. I heard the tone of your voice change the more she asked. I heard you begin to whisper. I glanced at your face to see if you might cry, but you were holding it together. I guessed the tears may come later when you are alone, maybe before you fall asleep tonight.

And I watched your little one. I watched him smile, and observe the other children playing – he was watching close, but something was keeping him from playing along. He looked at me and made eye contact. I waved and smiled. He smiled bigger and looked to you for reassurance, but you didn’t notice.

I wanted to say, “This tall, gangly boy of mine sitting next to you didn’t do any of that stuff either. We had to use flash cards to teach him words. He didn’t point at anything.  They thought he was cognitively impaired because he played with the toys wrong.  But you know what? He is the best speller in his class and uses words like ‘misheard’ and ‘eclectic’ as an almost-seventh grader!”

I really wanted to say, “These questionnaires are a special kind of torture for us, and you are most definitely one of us. You are not alone.  Don’t discourage too quickly.  Be hopeful, because he needs you to be. I have been in exactly that spot where you are sitting and it is awful, but better days are ahead. Believe in that little boy.”

But I didn’t say anything because I’m not sure I would’ve wanted anyone to do that when I was in your place. Maybe I should have. Instead, I hope you get the support you need through this process, and that you realize quickly that he needs you to just do what you gotta do to get him as close as you can to where he needs to be.

And that there are lots of us rooting you on, even if silently from the chair next to you in the doctor’s office.

My little blond boy, once upon a time...

My little blond boy, once upon a time…

Wishing and Hoping and Praying…

Question Mark Graffiti by Bilal KamoonRecently, I read a blog post by Autism Daddy, and response to that post from another… all centered around the old debate of whether or not you would take your child’s autism away if you could.

And I didn’t respond.

This has become a hotly contested debate, replete with comments like “Anyone who says they haven’t ever wished their child didn’t have autism is LYING!”

Here’s the thing.  Autism is a spectrum disorder, and often co-morbid with many other diagnoses.  Those with children on the severe end of the spectrum probably voice this wish every single day, and who could blame them.  And maybe there are some who even wish it every day for their child on the less-severe end of the spectrum.  You know what?  That’s OK.  That just hasn’t been my experience – it’s not me.  Never has been, and never will be.  Nor do I judge anyone else’s feelings – they are all valid, even if I personally think following this line of thought is a monumental waste of time and energy.

I believe that everything I have experienced has made me who I am today.  I will admit that there are times I wished I had never been married to the ex, but they are extremely fleeting because my next thought is, “But then I wouldn’t have The Boy.” And that ends the line of thought right there, because I couldn’t imagine my life without him, and don’t want to.  I also wouldn’t have met The Man, and wouldn’t be who I am and where I am today without experiencing that relationship with the ex.  Ultimately, it has made me a better person, even if I was miserable for most of that marriage.

And I have always been one to handle a situation rather than freak out.  Instead of running around like a chicken with its head cut off in an emergency, I have always tried to quickly lay out a plan.  “OK, that happened, now here’s what we do…”

I can’t imagine my son separate from his autism.  If you took it away tomorrow, I would have a stranger living in my house.  I doubt he’d love Disney movies as much as he does, and he might prefer playing XBox to drawing and making videos and riding his bike like he does now.  He wouldn’t be as innocent, or as willing to hug me.  Would he even have the same sense of humor? Who knows?  Not me.  But he would be different.  I like him the way he is.

That doesn’t mean that our experience with autism is all rainbows and lollipops, and you know this about us if you read this blog at all.  We are lucky not to experience too many meltdowns, but when we do, they are catastrophic.  We deal daily with issues like “How do we get him to not bring his iPad into a public bathroom, and record video while other people are using it?  How do we get him to understand that saying, ‘What IS it?’ with a sarcastic tone of voice could be thought of as rude? How do we help him get over this obsession with toilets, for God’s sake??”

I have said before that I would love to know him better, and that’s my biggest frustration with autism.  I fear for his future like every special needs parent does.  And I fear society, and how he will be treated as he gets older, and as more expectations are placed on him to conform.

But never have I wished away his autism.  It is the honest truth.

And never will I judge another parent who has.