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Anxiety and Stress in Large Public Elementary School: How Much is Too Much? Have You Pulled Your Son From Mainstream School and Transferred Him to. Smaller, Alternative School? Advice appreciated.

Recess. 2nd Grade. Balls Flying. Fast Running 2nd-5th graders "swooshing" past from behind. The Aide is chatting with the recess monitor. Now there is nothing to grab onto for balance. An Intense fear of falling masqueraded by a posed appearance of just fine. Longing to horse around with his friends on the play structure, he takes a deep breath and navigates the 5 short unstable steps through what seems to him like like an ocean of tan bark to join them from below. He made it, but feels unsteady on the tan bark, and plays with the kids aground in a silent and undetectable hell of high alert, for one may jump off and knock him over. He catches sight of the tree. An unremarkable tall tree near the play structure that has terrified him since the first day of Kindergarden. Back through the tan bark he carefully navigates to get far away from the tree. He can't go watch his friends playing basketball, the tree is closer to there than to the play structure. So he joins his friends playing the farthest away from the tree. They are playing Knights. Imaginary sword fighting. He loves that. He joins the group of imaginary sword fighting friends. Another private hell of hell of anxiety. How could they possibly know to keep the imaginary swords back from him a bit? Imaginary swords and the stronger friends swording them move in close and the bodies behind the imaginary swords fight closer. He gets knocked down. The Aide misses it. The whistle blows, hurry one and all to line up. The kids bolt. He gets up and gets in line, but the line was swift to move forward. There is a largish gap in the line between Him and his classmates. The elevator is broken. There are 17 stairs to climb.

As he does, a fountain of fatigue and devastation and stress untraceable to the masses consumes him. He has writing now. Math, Spelling. Reading soon will come. He is exhausted. His legs hurt from stair climbing. And he cries inside that it was harder to get up the stairs than the last time. Time to write. He is angry now. His hand sweats, his arm is sore from imaginary sword fighting and holding the stair rail puling himself up those 17 steps. He grips the pencil tighter, tries harder with some success, but has one eye on his classmates writing faster. Frustrated and mad as hell at his DMD he erupts. Shouts out, refuses to do his lesson, talks back to the teacher, disrupts the entire class and earns himself yet another trip to the office. His name on the board. Benched for recess tomorrow. He could care less. He's been a frequent flier in the office for while, and a more frequent bench sitter at recess. Sitting in the office, benched for recess tomorrow, he exhales now. He is not writing, the kid sent to the office delights in a private victory of sorts, he rests his hand wrist arm shoulder and neck, and he is benched at recess tomorrow.

He knew he would be. He hates recess but no one knows it. He is happy in the office. Trips to the office mean He will not have to be scared tomorrow of flying balling, swooshing kids, the tall tree, play structures, imaginary swords.,or falling down.

The relentless worry wheel he lives on slows down some in the office Then it's time to go back to class. Directly Across the hall. Less than 10 steps. It's the end of the day, he has been excused from the office, but he can't leave the yet. Kids are swooshing up and down the hall with rolling backpacks. He can't get across without getting knocked down. His Aide comes for him, he holds onto her hand for dear life.

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Ok so is anyone else's son faking to the masses he is ok in mainstream school or acting like a jerk to get out of recess and writing because he is quietly anxious and panicked as hell all day long? If so,
Did you transfer him to a smaller school, an alternative or experiential learning school perhaps?

Here's the thing. I'm happy with the school. They have bent over backwards to accommodate my son.
I just can't get my head around how being terrified all day could possibly be the best school life we can offer him. For me, it's not the academics, accommodations, IEP or else.

It's about the quality of his school related emotional, social, psychological, mental, and behavioral health.


I want to transfer him to a very small, experiential learning school for third grade come the new school year. No swooshing, no flying balls, no Simon Says, His Dad thinks he is fine staying put.

I guess it's that it's not that he's not fine. I just think he could be more fine, and it's our responsibility to ensure we put him where he will be the most fine.

Does that make sense to anyone?

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Yep, this makes plenty of sense to us...so much to consider when it comes to educating your kids. Especially if they have physical or cognitive challenges. My husband and I are advocates of smaller, more intimate schools, particularly of home schools. We belong to a thriving, very dynamic home schooling community in southeastern Arizona. It took three years of research and prayer before deciding to home school (there's a lot to it - it wasn't an easy decision, for sure!). That was four years ago, and we and haven't looked back. It allows us many freedoms - customizing our children's education to their own learning style, the freedom to not be tied to a desk all day or a set schedule, the freedom to let our 9 year old son (who happens to have Duchenne) to sleep in (to a reasonable time!) if he's super tired, etc. And despite a clinical diagnosis of dyslexia and dyscalculia, he is now reading at a 6th grade level (we conquered the dyslexia!) and is well on his way to defeating dyscalculia. He's a happy, gregarious, smiling kid who takes life by the horns and lives it to the full. Home schooling is definitely not for everyone, but has been an amazing experience for both myself and my husband and I's kids. Something to consider, anyway. We wish you well in your decision, and may God bless you and your family!

The flip side...despite anxiety in elementary school that grew steadily until 8th grade, we stuck out in public school and very happy about it. My son's confidence as a high school sophomore is remarkable considering where he was only a few years ago. He won't just graduate, he'll be in the to 5% academically. His peer relationships are still hard, but doable. He still worries about his future as an adult, but I feel it's no more than any other 16yr old.
Shawn and David, your replies are both helpful for layers of reasons. David, your flip side. Thank you for the exhale.
I can't seem to get any traction with my argument that he should be placed where I believe he will be the most fine. And it's looking like our son will stay put. And your flip side, your son's public school success, helps me to be better ok with that.

Shawn, I envy you your thriving, dynamic homeschool community. My highest wish for our son is exactly that. I know research tells us the inclusion in the mainstream school is preferred, but I know deep and wide our son is not that kid.

Duchenne is a tricky business. As you know, it's impossible for anyone other than a Duchenne parent to know how far reaching it's consequences are. Particularly at school. And it's impossible for anyone to truly know, other than mom and/or dad, what hidden longing feels like to an 8 year old. No. scratch that. It's impossible for anyone other than a Duchenne parent to even consider the concept of longing in an 8 year old. Well, I have found anyway.

Thanks again for your replies. Candice

At 12 I started my son on home instruction with a teacher.  He requested it.  He couldn't walk long distances at that point and didn't want to use a scooter in school.  He did well at home.  But of course he no longer had the social interaction.

Michelle, your reply is also very helpful. It's timely learning your son requested home instruction and didn't want to use a scooter. I just found out from our sons physical therapist that she had a conversation with him about energy conservation and fatigue management, and told him it's time either his manual wheelchair or his pride mobility scooter at school. She said he was very upset, told her he doesn't want his scooter at school. James has been asking me since kindergarden to find a smaller school. Without a play structure, Where kids play sports in slo-mo, don't play ball tag, Simon says, and don't horse around when they line up.

Yesterday he got sent to the office for "talking to my friends when we were supposed to be quiet and working". I told him he knew better, and his response broke my heart into a million pieces. He said that he gets pulled out most of the morning, so he can't talk to his friends, and at recess they are faster than him and he can't keep up to talk to them, and in the afternoon he has his aide in his classroom so he had to talk to them right then because his aide wasn't there that day.

So much in the day in the life of an elementary school child with Duchenne, or any kid for that matter. I worry that James' so much has become too much, and know one else sees that but me

Did you have any resistance with your decision to honor your sons request for home instruction, or did you just know it was right?

I knew it was time.  I would watch him walk with his para down the long hall way for  years.  As I watched this day  I saw how he was struggling and stopping .  It was too sad and painfully to watch. I ran up the hall and took him home. I spoke to him and explained he could use his scooter to go.  And his reply was " I walked into this school and I will walk out"  He said " I will not use a scooter to go"  So I knew what he wanted and I gave it to him.  He had some good teachers at home and did very well.  he did not graduate.  But he is smarter well beyond his years.  No one knows how long they will live but with Duchenne we know how he will live and how fast time goes by and I chose to make every moment of his life as easy and happy as possible. I took him out of recess and gym when he was in school and he came home for lunch.  He didn't need to be reminded that others were physically active and he wasn't. 

Our kids prefer home schooling, but even if they didn't, we believe it's our responsibility as parents to do what is best for them (even when they don't like our choices). We respectfully disagree with the statement that 'research shows inclusion in the mainstream education system is preferred' - our research has shown the opposite - that a smaller, privatized education (home school, charter school, private school) yields happier, more educated, better grounded children who are better able to withstand the rigors of our culture upon graduation - making a positive difference in the world. And like you say, when you've got a devastating disease like Duchenne, how and where your son spends the majority of his time will make a huge difference in his quality of life. 

We continue to wish you well as you work through which choice of education will help your precious son survive and thrive! 

Shawn, actually, I am grateful for your respectful disagreement. You say much more effectively what I have been trying to get folks to hear and consider. Overwhelm sometimes has my keystrokes faster than my brain can keep up. Obviously l obliterated my ability to proof read and catch a needed change.

I should have said "I have been disappointed to see families will often choose mainstream inclusion, because apparently our boys don't get services in some private or alternative schools."

My argument for the alternative school is rooted in what you wrote. I am so glad you didn't hold your disagreement back, because it strengthens my position to transfer. The alternative school I am partial to has 4 kids in the 3rd grade. Customized learning plans, input from the parents and child. He will learn based on his pace and interests.

Yesterday my son fell asleep with tears in his eyes he wouldn't let fall. Back pain. Calf pain. Leg pain. And just before he drifted off he raised his hand like they do in class, but only 3/4 high, and said "I'm sorry mommy, I keep shouting out in the afternoon, see I can't hold my arm up to raise my hand long enough to get called on anymore and I shout out so my friends know I am still smart." He fell asleep then my own tears fell. For what seemed like a long time.

I've got to get him into that alternative school. Come up with a new strategy perhaps. Do you by chance remember the titles of publications you have come across that favor my instinct for a smaller private school?

Candice I apologize for the late reply. Had written a long response last Friday and accidentally deleted it...erg technology is good but sure annoying sometimes...

I must clarify too that I'm Andrea, Shawn's wife. I should have made that obvious to begin with, I think this is the first time I've written something on this website but that's still no excuse.

Your son falling asleep with such pain in his young heart made me cry. I'm so sorry for him and for the pain you're going through and all the heartache.

When we first started feeling the call to go with an alternative school, I had no idea where to start. Went to Barnes & Noble, wandered to the education/kid section, and bought a couple books. The content intrigued me, so Shawn and I started doing some more research - asking friends who send their children to private schools or charter schools, searching our local area for info on home schooling, looking deeper at how the public education system operates, etc.

There's not just a few publications we found. Instead, we discovered so much information it was overwhelming at first. Over the years, we've have read countless articles/talked with so many friends and acquaintances/been to local and state-wide conferences/joined many groups/experienced first hand the benefits of smaller classes. In a nut shell I suggest doing as we did - heading to your local bookstore or using Google or whatever search engine to found out more. And go from there.

One thing that helped us discern truth from falsehood in our research is our faith. We realize the church is a beautiful mess, that though there's so much good in it, there's also so much wrong with it, and that Christianity often gets a very bad name (with very good reason). We also know that it can be easy to simply accept information based on the source - i.e. taking something at face value just because it comes from Christian group so-and-so. We prayed for discernment, and were so granted it. I don't know where you stand with God, if you believe in Him, etc. When our son was diagnosed four years ago (he's now almost 10) I screamed at God, hated him, called him names, didn't talk to him at all for a very long time. I was told by well meaning people 'you can't do that! you gotta have faith!' "Really?" I wanted to shout. "You have no clue what we're going through!" Don't ever let someone tell you that it's not okay to scream at God, cuz that's a total lie. He's big enough to take it. And He's big enough to be at your side every single second of every single day as you and your family continue this journey. Though I still get overwhelmed and saddened sometimes by what Duchenne is doing to our son and how it affects our entire family, friends, even complete strangers that we meet, I've learned to trust in Him more than I ever imagined. But I would be honored to pray for you and your family. For God to make it clear to you what the next step is with regards to your sons education, for your son to be part of a school where he doesn't have to shout to be heard, for his heart to be happier as he continues to learn how to cope with Duchenne, for his life as he grows and experiences the challenges this devastating disease brings, for you and your mama's heart that's breaking for your beautiful son. Your son is going to make an absolutely huge difference in this world Candice, in ways that he never could have if he didn't have Duchenne. Shawn and I believe that with all of our hearts. We've already experienced it.

We continue to wish you the absolute best as you work through what will be the best education option for your incredibly created, amazing son.

My son will be entering kindergarten this fall so I dont have personal experience here but i read this blogpost and found it helpful. Do you think the kids would be receptive? 

http://livingduchenne.blogspot.com/2014/08/education.html

Also, MDA will go to schools and talk to the class and staff for you. Another mom said this was helpful with her son. 

What a great article Stacy. Thank you for posting that! The overall site looks to contain lots of helpful material. I spoke with our son's Cub Scout den a few months ago. Quite similar in how this gal proceeded - I had time for each kid to run up and down the stairs with a backpack full of rocks strapped on (these boys are 10-11 years old, very active, and physically strong). After acting tough for the first few runs they began to slow down and were ready to listen. I showed BrainPOP's video clip on Duchenne, talked more about what it means, and showed the den a copy of an MDA pamphlet that our son happens to be in (they were impressed - doesn't take much to impress a bunch of boys!). Some of the boys volunteered physical difficulties of their own and we discussed those too, it helped take the spotlight off of our son. The entire group listened well, and we ended the meeting on a very positive note. Kids are kids and quickly move on to the next thing, but as they grow older and more self-aware/aware of others around them, I've no doubt one or two kids with strong empathy will always be there to help those who are physically challenged.

Hi. My son Luc is 5 years old and here in Australia he has started prep. He loves going to school but he struggles to concentrate and he also struggles emotionally. My little gentle boy has started to hit and scratch people, He has a very short fuse and because of the cognitive difficulties he does not always understand what others are saying and doing and gets very defensive. I am also investigating the options of special needs schools although the schools I have seen have children with a range of disabilities and I am afraid to put him in such a school ahead of his time as he is very mobile. I want him to be understood and not have hardships in that way and be in trouble all the time in the principals office. He has an aide and the school are really kind and helpful but I am not sure that this is the best place for him emotionally. 

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