Today is the Day

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.

finding our own path

 

And Then

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.

black-and-white-person-woman-girl

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? 😉

What’s Been Going On

Hello, Friends!

This is high season at work, so working a few hours extra is not unheard of, and there’s a lot going on at home, too.  I just wanted to write a quick little post to say “hey!” and to give you an update.  It seems everything happens all at once, and unfortunately, it’s not the right time to write about these things in detail, but…

  • We don’t want to jinx it, so The Man doesn’t want me to write about it yet, but things are looking good in the selling-of-our-house arena
  • This ugly situation has reared it’s head again, and this time, we are speaking to a lawyer…
  • Camp will work out after all, for The Boy, but he’ll have to wait until the end of this month, which happens to coincide with the only week his dad wanted him this summer.  If you follow the page on facebook, you may remember that the ex’s dad has been diagnosed with stage 5 Alzheimer’s and he asked for The Boy the same week camp started, as well as a family reunion we are attending out of state, so I told him we could do another week in July, and have yet to hear back from him.
  • Some friends and I are looking into Rising Tide Car Wash in Florida to see if we can replicate something like that in our area for our kiddos.  We are excited!
  • I answered one of our phone lines at work and connected with a local mom who just moved here. “My son is on the autism spectrum…,” she said, and so the conversation began.  I love it when that happens!
  • Did you know it’s almost the 4th of July? Where did the summer go??

Thanks, friends, for listening and sticking around.  It’s been a tough summer so far, but how do we manage?

Simple. We Just Do.

😉

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.

The Man, The Teacher

Can I just start this post off by saying I know how incredibly lucky The Boy and I are? I know there’s a lot of single mamas out there with kiddos with special needs, and I know that loneliness, and that feeling of hopelessness that you may never find someone to share your joys and burdens. I write this post in gratitude that life, circumstance, karma, or whatever or whoever you may think had a hand in it, helped us get to be this blended family of three.

The Man is a natural teacher and kid magnet.  Whenever we go to the beach, he picks out a couple of kids who show even  the slightest interest in his surfboard, puts them on, gives them a few pointers and lets them fly.  And after about 10 minutes, a whole beach-full of kids wants a turn.  Our little neighbor often comes over to see if The Boy wants to play, and just as often ends up “helping” The Man with his projects around the house, wearing his tool belt, and learning how to use a power screwdriver, under the closest of supervision, of course.

He shows me how to do stuff all the time.  I put windows into our trailer flip all by myself, you know, and I didn’t know how to do that before I met The Man.

He was the one to teach The Boy to ride his bike.  He taught him how to pee while keeping his trousers up.  He’s taught him how to surf and mow the lawn.  The other night, The Man had brought home some m&ms for The Boy and had told him he could have them when he was done practicing the tuba. But when The Boy and I ended the practice session, I was frustrated.  He is so freakin’ smart that he thinks it’s funny to play it incorrectly and doesn’t know when to stop joking around and get work done.  This is something we’re working on, and this lesson just didn’t go right. I was tired of everything and decided to go to bed early.  The Boy quickly grabbed the m&ms and headed to his room.  In his mind, he was done practicing which meant he could have them, while The Man and I both agreed that you only get rewards when you do things the right way.  I gave up and headed to bed, very aggravated and  unwilling to fight anymore.  The Man stepped in and I could hear him speaking to The Boy through the bedroom door. He came to bed and said he had explained that we needed to save the m&ms for when he actually got the work done on the tuba, and asked him to think about it, and also suggested that when he returned the m&ms to the fridge, he needed to come and tell me he had done so.

I was so impressed. The Man had calmly explained the reasoning and left it in The Boy’s hands to do the right thing.

Not five minutes had gone by when we heard a knock on the bedroom door.  The Boy entered to tell me he had returned the m&ms, and I assured him he could earn them the next night by completing our work on the tuba. He wasn’t happy about it, but he wasn’t melting, either, and he had made the right choice, guided by The Man’s words.

This is something that would not have occurred if his dad had been around.  This is something that would not have occurred if I was still doing it all on my own.  This occurred because The Man is a good teacher, and a good parent. I am grateful.

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.

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?

Sex Ed for Sale

Before break, 7th graders at The Boy’s school had a week-long sex ed program.  A couple of days in advance, an opt-out form was sent home that also explained where materials could be viewed (in the library, something like the following day in the middle of the day – very realistic for working parents, but I digress). I have never opted out of these programs for The Boy in the past because I feel it’s important, and I want him to have access to the same curriculum as his peers.

About the second day of the week, I noticed that the “workbook” for the program was in The Boy’s backpack and thought I would sit down and see what was in it.

The first page I had a problem with claimed that condoms were ineffective against STDs, and that only abstinence would ensure that you would not get an STD.  Half right, in my estimation.  I went to the CDC website to fact-check the information on the page, and actually found that this workbook page contained some inaccurate statements.

Concerned, I continued to read the workbook.  And then I came to this page:

gender

Ah, boys are logical and girls are sensitive.  Boys deal in facts, and girls deal in feelings.  All couched in “sometimes” and “generally” which are the equivalent to “no offense but…”.

Nope.  Not acceptable.  Not even “generally”.  And then, I found this:

marriage?

Check out Attitude #6.  Because if you don’t want to get married, there’s something wrong with you.

What in the world is this crap they are teaching the 7th graders in my county? I googled the name of the group that put the curriculum together.  It’s actually a women’s pregnancy clinic that maintains an anti-abortion stance, and sells this curriculum to school districts.  A pregnancy clinic that doesn’t even know the facts about STDs and condoms.

I emailed the principal, knowing that this curriculum was probably selected by a committee, and was approved and paid for by the school board.  I asked her who I might contact with concerns about the program.  She took several days to email back, and even then only said that one of the counselors would be contacting me about my concern.

At least a week and a half went by before a school counselor called me and referred me to… drumroll, please… the pregnancy clinic that published the curriculum.

That would be like referring a library patron with concerns about pornography in the library to Larry Flynt.

I will be pursuing this with central office.  I will attend board meetings if I have to.  This curriculum is insanely out of date, and presents opinion as fact, which is a very slippery slope.  I just wish I had had better access to this in advance, and I wish the school had handled my concerns more appropriately.  I’m extremely disappointed with their response.

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.