Tag Archives: Family

Not Enough Hours

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Just a quick post to say that it will be a light week, blog-wise. We hope to move into the new house on Saturday, which means we not only need to get the house ready for us to move in (painting window trim, putting up a mailbox, installing closet rods, installing carpet, installing baseboards, and using lots and lots of caulk), we also have to pack up and organize the rental house (and the storage unit), all before Saturday, all (at least for me) in addition to the full time job (busy due to payroll taxes being due on Friday), and feeding and clothing my family…

Not complaining, just seriously leaves little time for writing…

 

Anyway, thanks for your patience and as always, your support. 🙂

The Truth is

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We’ve been settling into our new summer routine this week, as The Boy’s Summer Day Camp run by the Autism Society started on Monday. We are working out our timing and logistics to get him there and get him home, and allow him time to transition. He has been rolling with it.

Until today.

Literally seconds before we were to walk out the door, he complained that he couldn’t find his key.

Uh-oh.

He has a collection of mis-cut keys from the hardware store and he pretends that each belongs to a vehicle that he “owns.” The various vehicles come in and out of favor, but he never forgets one. His pretend vehicle du jour is a Dodge Ram van that has been retro-fitted to be an ice cream truck. And apparently, he misplaced the key at some point between the time he left camp yesterday and the second we were leaving the house this morning. Unbeknownst to me.

90% of the time he has misplace something, he ends up finding it at Grammy’s house, usually under the bed. I tired to encourage The Boy to “look again” at Grammy’s and if he didn’t find it there, to “look again” at Camp, and we would “look again” at home this evening before we determined that it was “gone forever” and he would have to “get a new vehicle”. He insisted he had already looked, and it was gone. (If your kiddo is anything like mine, he scans the room at eye level and if he doesn’t see the thing he is looking for, it has grown legs and walked away. Heaven forbid he actually pick up the myriad things on the floor to look underneath for the missing thing.) He said he didn’t want to go to camp and began making a general ruckus. Then miraculously, the key appeared there at the end of the bed, even though Grammy knew it hadn’t been there before…

The thing is, we can try to prevent meltdowns all we want, but sometimes, they just come flying at you like a brick out of nowhere. And you just have to roll with it the best you can, and try to de-escalate the situation and keep your wits about you, always thinking about the next possible steps. We’re “if-then”-ning in our heads the whole time, instantly coming up with plans b-g just for every contingency. Would it have helped if I had helped him prepare for camp the night before? Maybe. But knowing my kid, even if we put the key in a safe spot last night, that doesn’t guarantee he gets it out after bedtime and moves it. And it doesn’t guarantee that it wouldn’t have been something else he decided he needed at the very last minute this morning.

The truth is, sometimes your best option is to just roll with it and forgive yourself for not having seen the brick before it hit you in the head. Sometimes bricks happen.Keys to the Sonic

What It Means to Be Not-Quite-Verbal

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The Boy's self portraitThe Boy is verbal. He can speak in short and long sentences, has quite a vocabulary, and is an incredible speller. But not always.

When he was a toddler, he didn’t have as many words as his peers, and we ended up in speech therapy. We used flash cards to get him to learn nouns and actions. He went to speech twice a week for several years.

He now loves words, and particularly loves word play, and puns and jokes where double entendres are at the center. But, there are times when he cannot speak. There are times when it seems he refuses to answer. His teachers encounter this often, and it isn’t (as they too often assume) because he doesn’t know the answer. He simply can’t.

And he wants to.

A few Halloweens ago, he was trick-or-treating with friends and I was following with another mom. A couple of giggly girls recognized The Boy, and came up to say hi. After they went off in a different direction, I asked him about them. “Who were they?” No response. Knowing he probably knew but couldn’t tell me, I tried not to make it a big deal and we continued on our way. Shortly after, we arrived at a house with two cars parked in the driveway. “Mom!” he said. “Er, look,” he said, pointing to one of the cars. “You know, the girls…” he said. He was giving me a clue, and excited he had a chance to communicate with me. After a little back and forth, I realized the car was a Lexus… and the girl’s name was “Alexis”. Then he told me the other girl’s name through another clue (she had the same first name as his favorite teacher from elementary school).

If you first understand that there are times when he can’t speak, and then also understand that he wants to, and finally give him the opportunity to give you clues, communicating is possible. It requires understanding and patience, though. And discrete labels aren’t helping, either. So I’ll stick with “Not-Quite-Verbal,” and keep working towards understanding.

All Quiet on the Northern Front

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On Father’s Day, we were up north, but I made sure The Boy called his dad. He spoke with him briefly, spoke to both of his uncles briefly, and spoke to his grandpa briefly. The call lasted 7 minutes.

I tried to think back to the last time they had spoken, and couldn’t think of a time since he had dropped The Boy off with us in January, at the end of his winter break. I checked my phone bill and I was wrong.  He did call once in March, and they spoke for 9 minutes.

For those of you keeping score, that’s 16 minutes in 6 months.

There hasn’t been any attempt to get any time with The Boy for the summer break, and there has been no discussion of when the next visitation might occur. Maybe it’s because I told him unequivocally in January that The Boy flying alone on a plane wasn’t going to happen any time soon. “It’s not a good idea,” were my exact words.

Is this the beginning of the end? One initiated contact in the past 6 months?

I don’t have any words. Just sadness.

when the school calls...

The Trip Recap

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The Boy and I just spent a long weekend visiting old friends and relatives up north. I had promised him three years ago when we moved away that we would visit. This year, I made it a goal to make good on my promise. When an airline opened up a new, cheap, nonstop flight, I jumped at the opportunity.

I encouraged The Boy to make a list of places he’d like to go and people he’d like to see. I coordinated with people on Facebook who wanted to see us, and planned our trip in morning-afternoon-evening chunks, allowing for travel time via rental car. Fantastic Babysitter put us up, even though she was out of town for a couple days. It worked out beautifully as The Boy was comfortable in her house, a place he had been many times, and we saved money on a hotel. The bonus was that the weather was gorgeous, and she lives in a quiet neighborhood, allowing us wonderful downtime at the end of each jam-packed day.

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❤ She hadn’t seen him since she was 3, but asked to hold his hand in the parking lot 

Most of our “places” to visit were really restaurants (um, yeah… we like food. A lot.), and we made a point to eat at places we just don’t have back home. Even better was the company. Every single visit with friends was a joyous, picked-up-right-where-we-left-off extravaganza. The Boy had even prepared three PowerPoints (unbeknownst to me) to share with his former ASD teacher at lunch on Saturday.

The Boy was simply amazing. At our favorite eclectic arcade on Friday, one of his favorite games had been removed, and I didn’t even realize until after the fact, when he explained to me a few times that it had been moved (I put two and two together because of the perseverating on the same point). But he didn’t get upset about it. The only thing that really did upset him was that he was reminded about the glory of the ice cream truck, something we just don’t have where we live, but a treasured memory from living up north. We glimpsed one a few times during the weekend, but didn’t end up realizing his wish to purchase ice cream from one, and that was a tragedy by Sunday.

I could see fault lines forming by the time we got to the gate on Monday to get back on the plane to go home. His laptop was not charged and would not charge. It got a little hairy until I enlisted the help of the gate agent, who allowed us to use her outlet behind the desk. The rest of the day, The Boy was a bit “tetchy” about everything. He didn’t want to come home, but was mollified by a stop at his favorite arcade in Myrtle Beach before heading back home.

It was a huge success, a wonderful time, and I was incredibly proud of The Boy. The people we visited were not the only ones impressed by how much he has grown in three years.

Has this Happened to You?

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You are at some school or other kid-related function, and a parent begins talking to you as if they know you. She or he prattles on about their child by first name, and your child by first name. But you’ve never met them before in your life.

IMG_4054-0I suspect this is common for those of us with kiddos on the spectrum, at least those of us whose kiddos are not-exactly-verbal. In my experience, The Boy becomes a kid at school that everyone knows, or at least knows of, but because we have limited social interaction with the same students outside of school, I know none of these kids. It is also due to the fact that The Boy is fairly nonverbal about anything that happens at school.  This is why I try to go on at least one field trip per year, so I can put names with faces.

The latest occurrence happened at an Autism Society Friend and Fun event, and I met a mom and her daughter, a girl who is a year behind The Boy in school. He’s gone to school with her for two years, so her mom assumed I knew her daughter, or at least knew her, but I had never heard her name mentioned before, and had never seen her before.

I’m clearly at a disadvantage when this happens, and never quite sure how to respond without seeming rude, and I really should come up with something to say. I would love to know more of these kids and their parents. It would be great for both of us to make more connections, but it’s almost as if he is a celebrity and lives a double life.

Apparently, what happens at school stays at school, and the first rule of school? Never talk about school. 😉

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.

finding our own path

 

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.

pexels-photo-69100

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? 😉

Scheduled Time

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I lost one of my two flute students to gymnastics this week.

When I was a middle school band director, I lost more than a few to hockey and dance.

But when I was a kid, this wasn’t a thing. Sure, kids were in soccer and I even took ballet in kindergarten. But this every-night-of-the-week-for-four-hours-a-night-oh-and-four-hours-on-Saturday-too was definitely not a thing. Neither were the moms who got mad because the rest of the world couldn’t accommodate their insane schedule. “What? You mean I can’t get a dentist appointment at 3am on a Sunday because that is the only time my kids are not in dance/gymnastics/swim/horse back riding/AAU badminton??”

*dragging over large soapbox*

*standing on said soapbox*

When I was a kid, we did this thing called “playing” with the neighborhood kids. We even had a game called “Ghost in the Graveyard” for when we were out past dark – shocking, I know. We rode bikes, climbed trees, ran through each other’s houses like packs of wild animals looking for fruit snacks, and then back out through the other door. I “taught school” to some younger children (for as long as they would stand it) on the hill in a neighbor’s yard across the street. We rode bigwheels back and forth down the street. When we got a little older, we walked across a small field (with garter snakes!) to the convenience store to buy candy.

We were not scheduled within an inch of our lives.

I think today’s parents have control issues. IMHO you should not be involved in any activity which eats up 24 hours of your free time per week at the age of 9. It’s wrong, and there will be long term consequences. Don’t you trust your children to any degree? Do they get any say in how they spend their waking hours?

Autistic kids aren’t usually much for team sports, and for this one small blessing, I am thankful. But even if The Boy were not on the spectrum, I would not be raising my child on scheduled time.

*crawling down off soapbox, albeit ungracefully because I only had the one year of ballet*At the Cape