A family's story

Posts tagged ‘Things that I find hard’

Semantics

This morning as I was chugging along on the treadmill, I decided to scroll through Facebook to entertain myself. The impending change in weather made it onto a few of my friends’ pages. (Mine, included.) There were posts about Lady Gaga, posts about Leonardo DiCaprio, posts about Chris Rock and the Girl Scout cookies, and posts about John Oliver discussing Trump. #MakeDonaldDrumpfAgain (That’s as political as I intend to get here.)

I noticed that a friend of mine had posted something on her page about autism and “gut” bacteria. I debated just letting it go, but I decided to read it. It was an almost two-year-old article about the link between autistic behaviors and “gut” issues. I read it. It’s information that has been churned out several times. I don’t disregard that many autistics have issues with their GI tracts and such. I have seen that. I’ve experienced that. But the headline of this particular article baited readers into thinking that “gut” imbalance CAUSES autism and a “simple” daily probiotic would make challenges disappear…. Pffffftttttt.

I did respond, saying that while there may be some correlation, autism is neurological in nature, and really is the way the brain works.  I noticed that someone had posted about the fact that “wouldn’t it be great to do a combination of behavior therapy and probiotic to help autism, which proves it isn’t caused by vaccines and is a “birth” defect.” I knew what the person probably meant, but, I took a little umbrage to the use of the word, “defect”.

Now, my son has challenges. He has deficits as compared with like-age peers in terms of comprehension, language, processing, etc…but “defective”? I can’t buy into that. When I looked up the word “defect” in the dictionary, it stated, “a shortcoming, fault, imperfection”. Aren’t we all a little defective, then? I mean, really.

I then looked up the word “disorder”. When applied in a medical sense, it was listed as, “a disruption of normal physical or mental function”. Well, we all know “normal” is just a setting on a dryer. Does my son follow neurological development of other children his age?! Hells no–so yeah, I guess disorder applies. Further down, I saw a definition of “disorder” as a verb listed as “disrupt the systematic functioning or neat arrangement of”. I chuckled at that definition, especially when I consider how routine-dependent my son can be. And have you seen the way he lines up his Paw Patrol guys?!

We also refer to autism as a disability. Sooo, I went to look up the word “disability”. Dictionary.com says, “A disadvantage or deficiency, especially a physical or mental impairment,that prevents or restricts normal achievement.” (emphasis is my own) My son approaches the world from a different angle than most. I wouldn’t say he’s wrong. Just, well, different. As long as he has success and happiness and support..well, I think the kid’s gonna be all right. I will concede that it may take him longer to arrive, but he’s going to get to the finish line. He will.

I guess what I’m getting at is, if that person says, “potato”, I say “potahtoh”. She says “defect”, I say, “Unique vision and approach to the world.” And let’s just leave it at that….

 

Something New

So last week I took a step out of my comfort zone and tried a cardio kickboxing class with a fellow mom from my boys’ school. It was a small group at a tae kwon do center, and I liked the work out. Everyone was friendly and no one said anything about my jiggly middle and offbeat moves. It took me a couple of weeks to get comfortable with the idea, but I’m glad I made the change.

Today I returned for another class. This week was a little more intense, but I enjoyed it again. It’s good to step out and try new things. I need to remind myself to do that more often.

I often talk about my boys and their rigidity, but I am a creature of habit, myself. I like sticking to what I know versus trying or attempting something that I may not be familiar with. Know that feeling?

I know I drive my husband crazy with my hemming and hawing…and my resistance to change. Case in point??? Our dryer decided to bid us adieu this past weekend. I opened it so that I could leave the house and the motor decided to not work so much anymore. Waaah! I know it’s a 12 year old more basic model dryer, but still….couldn’t it hold on a while longer?!

We started to look at new appliances. Hubz isn’t sure that he can fix the problem sufficiently. In our search, we noticed that all of the fancy washer and dryers that we prefer won’t fit in our laundry space. See,  our house has a small laundry room off of the garage entry. It *should* have been made bigger and been a dual purpose mudroom/laundry room, but that isn’t the way it was set up. The house was built in 1988. Appliances were smaller back then. Soo0…that means we will have to move our laundry area to the basement if we want the cool see-through top loader and dryer–which we DO want because (a) it has larger capacity, (b) it’s more efficient and (c) Tate absolutely LOVES washers and dryers. We’ll have to get someone in to do the electric and water and gas hook ups. Hubz wants to put in a utility sink. BUT this means I have to go up and down TWO LEVELS to do our laundry. I know me. I know our kids. I’m afraid that our laundry will end up lying around in the basement getting musty and stinky.

I also am overwhelmed at the idea of having to convert the laundry area into a mud room. It should be easy enough, but it is full of stuff. We have way too much stuff around here. Most of the items in that laundry room should probably be donated or thrown out. And it definitely needs to be painted. And do we put in a bench or just a couple of chairs? Do we install a few cabinets or do shelving? What color should we paint it? While we are in there, should we clean out the mini-closet that is full of MORE STUFF?! (Yes, yes we should.)

But it’s all change. It’s all different. It’s all going to change our routine and the way I handle laundry. It really makes my heart race thinking about it.

Hubz is going to try to install a new motor in the dryer this weekend to give us a little time. Give ME a little time to visualize and get comfortable with a new set-up, new appliances, new look.  Change is good, right?!

Fabulous at 40?

So, in 20 days I will be 40 years old.  I’ve seen so many memes lately about “I don’t feel 40 until I go out with people who are 20 and then, yep, I feel 40”. Okay, maybe not EXACTLY that wording, but you get the gist. You guys, it is SO true. When I am THINKING and PONDERING and possibly PERSEVERATING on various things, I don’t feel a day over 25. For real. But then I try to do something physical, like, oh, I don’t know, open a jar of pickles, and gosh darn it, I FEEL the pain. That twinge in my thumb. A creak in my wrist. Oh, man…..

In my efforts to “get fit by 40” (which, news flash, I didn’t), I have been walking for 30 minutes a day, at least 5 days a week. I’m proud of myself for having walked more than 10,000 steps a day most days of the week, and for maintaining regular exercise. However, it isn’t the most rigorous. And I definitely eat too many calories. (Sidebar: Why do bread, bagels and cheese have to be soooo damn delicious?!)

So, I find myself sitting at the higher weight (holiday candy and cookies be damned!) and needing to step up my fitness game. Sooooooo, I am taking the 21 Day Fix plunge. Eeeek! I did it last year and felt better. This year, I will do it again, but I will remember to do the MODIFIED workouts to start. Even with modified workouts, I know that for the first week, possibly two, I will be so sore, and Advil will be my friend. If you see me hobbling around, or having trouble getting down into a chair, no need to worry. It’s just that I’m so out of shape. I just need to tell myself that this is better for my body in the long run!!! I will also try to aim for the 10,000 steps a day. It keeps me active, even if I am slightly a slave to the Fitbit. 😉

Also, I keep reading about the devil that sugar is to us humans. C’mon, man! In addition to bread, bagels and cheese,  I also love candy, ice cream, flavored lattes, etc. But, I am sure that sugar in the amounts that I consume it is not the best, so I will work on cutting down on that sugar consumption. I’m not happy about it, but I will. I will work to appreciate fruit as a dessert. (Insert eye roll here.)

Part of being fabulous means working the mind, along with the body. To achieve this, I plan on writing more this year. It is a good outlet, and I love rereading some of my old posts. It’s like a diary that I share with the world. But it is a good record of my life and happenings. I think I may also try my hand at writing a book. It may never be published or shared for public consumption, but really, I just want to see if I can do it. Wish me luck!!!

Last year I worked at trying to find my happy. I lost my way a few times, but overall, I think I did find it more than I had been in the past. That is my goal for my 40’s. I want to find my happy. (And for this conflict-averse, people pleaser, that is going to be HARD. But I’m going to do it. Just watch me!!!)

So, yeah, I may not be “fabulous by 40”, but I’m hoping to work on being fabulous IN my 40’s. That’s a good goal, right? I have 10 years to get it right.

 

Middle School is looming…

April 29th. How the heck is it already April 29th?! This year really seems to have moved full speed ahead!!! The boys are done with this school year in 6 weeks. I am ironing out therapy, summer school, and summer activity schedules right now. It seems so far away, and yet, so close.

I also can’t believe that we are nearing the end of the school year. Big changes loom ahead. Jake heads off to middle school in the fall. MIDDLE SCHOOL. I hated middle school…well, back then it was called Junior High. And who am I kidding, I went to a K-8 parochial school…but the 6-8 graders did have their own area of the school. It was the armpit of my educational experience. Yuck. I am trying not to project that too much upon him.

This is another step closer to his independence, to him being a “big” kid. Middle schoolers are required to know their schedules, juggle locker combinations, dress in a PE uniform for gym, and switch classrooms for every period. That’s a lot of moving around and keeping things straight for any child, let alone for a kiddo with executive functioning issues, focus and attention issues, and anxiety. I need to calm my own anxiety so that I will be able to help him with strategies as the struggles occur. And they will occur…but hopefully we can work through them and stop struggles from taking over.

Middle School also means a new IEP team. A new group of teachers, specialists, and the like. We are currently in the process of re-evaluation. It’s time for his 3-year reassessment. I know he’ll still qualify for services, but I’m also nervous about what may come out of this meeting. Unfortunately, we had already had his yearly review meeting in February, in which it was recommended that he take Instructional Math and Instructional Reading/Language Arts, which are smaller classes. We worry that he will lose ground on the curriculum. He is in a co-taught classroom for other subjects.

With the reevaluation, I’m hoping that he will score higher in language arts/reading to justify a co-taught experience. I really do think he can handle it. It’s not like he doesn’t get support at home. We have tutors, he works with me, he works with Hubz. I just think he CAN do it, if that is what we expect of him. The math, well, the math I understand. He is floundering. It would help if he used his tools…and if the teachers reinforced that he should use his tools. I understand that he needs to be independent and needs to figure some things out on his own, but seriously, give the kid a checklist so that he has a reminder of what he CAN use in class to help him.

As much as Jake continues to have academic struggles, it has been a banger year for social/emotional growth. He is doing amazingly well. We had to make some tough decisions, but ultimately, our choices have worked well. He is happier, more well-adjusted, and able to address triggers and cope with them. He is playing with the boys on the playground and eating lunch with them in the cafeteria. He is a part of it…instead of being mothered by the girls, he has friends…and his confidence is growing by leaps and bounds.

Middle school also means new friends. Two and a half elementary schools feed into our middle school. The kids that he’s grown up with over the past 6 years know him and his quirks. They know they have to wait and be patient. They know he talks too much when he’s nervous, and that he will defer to talking about animals when he doesn’t know what else to say. They help him a lot, too. But the other 100+ new sixth graders don’t know him like that…and what happens then? I am not even going to let myself think about 7th and 8th graders. I just may faint.

I know it’s a right of passage. I know that we all have had to figure these things out..and that we have all had our share of failure and success. I just hope beyond hope that he is okay…and that we’ve given him enough tools to be successful.

The Gaps..and the Hard Place

I know I also haven’t written as much lately because, well, my boys are getting older, and I just don’t know how much I should share. I hear this sentiment echoed often through the blogosphere…I do hope that my boys know how much I love them and how much my writing is a catharsis for me.

I decided to write today because I am struggling to process through the events of this morning, and I just need to work out MY feelings.

Our school always does a breakfast for veterans. It is well done, and teaches the students about sacrifices that our veterans have made for our country. The third graders are responsible for putting together the event. Well, the teachers and a few of the third grade parents plan it. The kids make crafts and invite veterans and sit with the veterans during breakfast. The rest of us moms and dads volunteer and serve the veterans and kids, and help them in their endeavors.

We had prepped Tate for today. I did a little social story. His teacher sent home the songs that would be sung. I showed him pictures from the Veterans’ Breakfast that Jake’s class put on a couple years ago. He knew that I would be there helping out, and that my dad, Grandpa, would be there, too.

Tate started out just fine. He sat with his Grandpa and with some other students from the class that he pushes into. Then he started to look for me. I was out directing guests to the right location. One of the aides came to get me so that Tate could say hi to me. We walked in, and Tate ran up and gave me the biggest hug and hugest smile. We talked about how I was going to help, and how he had to go sit with Grandpa. He went back and sat with my dad.

At first, everything was just fine. The veterans mingled with the children. We parents walked around, offering refills of juice, coffee, water, and fruit and pastries. Tate happily sat by my dad and talked to him. He started to stim with a spoon. He came up to find me. I assured him that all was well, even though I could hear the voices getting louder, and the commotion started to increase.

Tate sat beautifully through a VFW representative’s speech. He kept stimming, but he was seated. Then, people started to move around. Parent volunteers started to roam the aisles to get pictures of their kids with their invited veterans, or pictures of them with their child. Tate is in a no picture phase, so I knew that when I asked he would politely turn me down. “No thanks, Mommy.” I snuck in a few but they weren’t the greatest quality.

The noise in the gym started to increase. The screech of the chairs. The talking over one another. Peals of laughter. Shrieks of delight. Little by little the noise increased as the time dragged on. It started getting warmer in the gym, too. Some adults took off their sweaters or their vests. Some removed jackets. The third graders were starting to roam around and find their friends.

During this time Tate got up and posed for a picture with some of his classmates. He really struggled to do it, because, like I said, he is in a no picture phase. But his beloved girl classmates were asking him to join them, so he did. Then they were starting to get silly and do girly things. It was clear that Tate was no longer a part of their interaction. I asked Tate to sit down. He did, begrudgingly. He wanted to be with his girls.

One of the girls told him he couldn’t sit by them, because he isn’t in that classroom. He got flustered. He really struggles when it comes to handling his emotions of disappointment or embarrassment. He was so disappointed. He threw a spoon in her general direction. When I asked him to calm down, he said, “sorry, mommy”. I tried to explain that the girls were with their class, and wanted to be together..and that he could come talk to the boys. He didn’t want any of that.

Then, well, one of his beloved girls came back to him and asked why he was yelling at his mom. He lost it. He pawed at her. I pulled him aside and asked him to calm down. He laid on the floor. One of his aides came by and we got him into the hall, the hallway where it should have been quiet, but unfortunately, the 2nd grade was getting their coats to go outside for gym class. He wasn’t getting his quiet escape, so he asked to go back in the gym.

As we entered the gym, the girls came by him again. This time, he hit at his beloved girl a little harder. I was gobsmacked. I reacted, maybe not as I should have, but I told him he needed to calm down and keep his hands to himself. I directed him to his seat. I forced him to sit down. He started to call me stupid. Then he threw another utensil in his beloved girl’s direction. One of the regular ed teachers tried to step in and reprimanded him. That did no good. He started to fake wail. He was losing his shtuff.

His teacher came to the rescue. As he was whining out of frustration, she walked up calmly and asked if he’d like to go do a break in the classroom. He said no. He stood up and called his beloved girl stupid again. Tate’s teacher knew he didn’t mean it…she knew that he was just frustrated…and embarrassed…and overloaded. So she told him that he had a choice. He could do a break in her classroom or go get a drink of water so he could calm down. He chose the classroom, and they were off.

As they exited the gym, the third graders lined up to sing their songs for the veterans. Tate SHOULD have been there. THe singing is his favorite part. He LOVES music. He’d been practicing all month. But it wasn’t meant to be. He was content to be in the quiet classroom where he could bounce on the trampoline for a few and not have all the overwhelming noise and commotion.

As Tate found his calm in the classroom, my heart broke. It’s not fair. Something as “simple” as an hour-long breakfast with other third graders and veterans was just too much. I wanted to cry. I wanted to scream. Instead, I watched other children sing and sway and pledge their allegiance to the flag. My dad watched other people’s grandkids belt out “The Star Spangled Banner” and “America the Beautiful”.

In those moments, I wondered, are the gaps getting too big? Is Tate being properly served by being in a general school setting at various times during the day? The other children his age are maturing at a faster rate. They are able to do so much more independently. They are able to perform songs as complicated as “The Star Spangled Banner” and can last an hour in a large group of people. Tate tried. He gave it his all. But in the end, it was too much. And is this gap fair to him?

And I find myself back in the hard place…wondering if we are doing the right thing. Wondering if we are keeping him in a general school setting because it’s more comfortable for us…is it what’s best for him?

And that internal struggle as a parent begins over again…

That Hard Place

I try to focus on the hope part of my family’s story. We have so much hope for our boys, and we really do focus on the positives. We work tirelessly with all three of them to try to get them ready for that “real world” that awaits. I’d be remiss, though, if I didn’t share some of the hard stuff. Well, I know I do that…but lately I’ve been stuffing the “hard stuff” deeper and deeper within me, and I just need to hit the release valve. I think that’s one of the more difficult aspects of being a parent. Finding the balance between the hope and admitting when things are just hard.

This past Sunday at our church, our religious education leader started the second grade pledges for the Sacrament of Reconciliation. The Catholic Church believes that before we are to receive First Holy Communion, we must confess any sins and have the grace of God with us. So, the children pledge to work hard and prepare for the sacraments. First, they learn about and prepare for Reconciliation (Confession or Penance). Once they have celebrated that sacrament, they are ready to prepare for First Holy Communion. It’s kind of a big deal…a rite of passage for our youth. I’m not sure how second grade became the *right* time, but it is. For most kids.

We were at Mass, struggling to keep Tate in our pew. He was fairly dysregulated that day, and it was hard for him to keep quiet. He really had a need for vocal stimming. Hubz was awesome about taking Tate into the waiting space every so often so he could get his cuckoo noises out. (The newest stim sound….it beats “poop”. Let’s leave it at that.) So, as we were walking the aisle and the waiting space with our second grader, other second graders were handing their pledges to our priest and standing in front of the congregation getting blessings and prayers for encouragement.  And there we were…our second grader oblivious to the process happening around him.

This year there will be no First Reconciliation. Of course, Tate is so pure of heart and soul, I really think his worst “sins” are disobeying his parents and trying to get a rise out of his brothers. There isn’t a mean bone in that kid’s body. He’s not resentful. He’s not angry. He’s not mean. His confession would be really short, that’s for sure. And it would be a lot of pressure on him to follow the process. I know he’s not quite ready…yet.

Because there will be no First Reconciliation, there will be no First Holy Communion. And you know what, I’m not afraid to say that this makes me sad. It is hard. It’s yet another milestone that my child will have to wait to hit. He will get there. I have no doubt about that…but it’s delayed. Like so much else. And sometimes, sometimes that makes me want to scream and shout. It’s not fair! So not fair!! (I feel especially this way considering that he goes to Mass regularly (with some sensory breaks) and has attended religious ed since he was 4 (and now attends his SPRED group).

This is just one example of something that is hard for me, as a mother. I don’t think Tate feels left out or finds it unfair that he’s not standing up in front of the congregation right now. That would be very difficult for him. He struggles with being the center of attention. He also doesn’t grasp the meaning of our sacraments yet. (I think he only wants to get Communion because he thinks it’s a potato chip..and well, he’ll be sorely disappointed.) But, as his mom, and as someone who understands that the celebration of Communion with our church community is essential to being Catholic, it weighs me down. And shoves me into that hard place.

One Down, One to Go

Since my last post, Tate’s IEP meeting has been rescheduled twice. It is now next Wednesday. Jake’s IEP meeting was yesterday. 

We were under a time constraint, as most of the team had another meeting at 9:45. About 5 minutes into the IEP, the principal joined the fray. She has never been at an IEP meeting, so Hubz and I got a little uneasy….but she mostly sat and nodded and added a few comments here and there. It became clear to us that she just doesn’t understand special ed…or ADHD. At all. *sigh*

Overall, the meeting went well. We have a good plan in place for Jake. He is blessed with another fantastic teacher, who really understands the need for accommodations, modifications, and specialists and such. She is so helpful and had a plethora of ideas to help Jake succeed in school. His resource teacher is good, and is incredibly willing to work with the general education teacher to make sure that Jake isn’t missing out on a “typical” 4th grade experience. I absolutely love that the resource teacher is pushing into his classroom to help him (and a couple other students) more. I think that is huge for Jake.

The toughest part of the meeting, as always, is listening to the areas of weakness. That never, ever is easy. I will never, ever be comfortable with it. Hubz and I agreed with the statements made about Jake’s current areas of need, but it’s just not easy to hear about your child struggling. Especially when the number one struggle is anxiety. 

Anxiety. The anxiety beast runs rampant around here..and right now, it’s got it’s clutches on Jake. He is so debilitated by his anxiety. It is heartbreaking. We scheduled an appointment with his psychiatrist on Friday. I am trying to get a psychologist appointment, too. We brainstormed some ideas during our meeting to help him combat the beast while he’s at school. We have a few checklists that he can use in his folder, and we decided that he should get a daily “bounce break” in the social worker’s office. He can use her ball, her trampoline, or just sit and decompress…after math. Because math and numbers are another of his nemeses. (??) 

Overall, though, my fears about placement in a self-contained classroom were assuaged. They want him in the general education setting. We all believe that if we can get through the anxiety component, we can really watch him flourish. So, we are all in agreement that his placement in general ed/resource is right for him. 

School shouldn’t be this stressful for kids. It just shouldn’t. 

Tag Cloud

Mama Is Only Human

my journey...

Zero Exit

by Sara Jagielski

Musings of an Aspie

one woman's thoughts about life on the spectrum

Finding Cooper's Voice

An honest and real look at nonverbal, severe autism.

Emma's Hope Book

Living Being Autistic

Carrie Cariello

Exploring the Colorful World of Autism

Gingerheaddad

A redheaded dad writing about parenting, autism and the odd piece of stuff

Grady P Brown - Author

Superheroes - Autism - Fantasy - Science Fiction

Swim in the Adult Pool

Finding humor in an ADHD life without water wings

Who Am I? Why Do You Care?

I am a woman on a journey. Where I'll end up is yet to be discovered.

Organized Babble

Babbling in the most coherent way possible

Addicted to Quippsy

In the not-so-distant future, you'll wish you wrote down everything your kids said. Now's your chance!

Filtered Light

“Sometimes the dreams that come true are the dreams you never even knew you had.” ~ Alice Sebold

that cynking feeling

You know the one I'm talking about . . .

Run Luau Run

Run Committed

beyond the stoplight

sharing resources to create caring classroom communities for all children

The Domestic Goddess

Marj Hatzell Has Been Giving Stay-at-Home-Moms a Bad Name since 2005