Clouds, May 2010

Clouds, May 2010

Sunday, June 12, 2016

love yourself

The weather was sunny & breezy & clear today-- what I would call a well-balanced day... a little bit windy at times, but a temperature of high 70s/ low 80s... no air conditioning needed. All four of us were outside this afternoon-- Sammie, too. I was lounging on the deck really taking it all in & for the first time in a long time, feeling optimistic about the summer because I won't be juggling sitters. 

It is not ideal that I'm not working full time right now. But in the interim Hayden & I can set our own schedule. Sometimes the relief in that balances out the stress. And as I sat on the deck with a table umbrella shading my face, my legs in the sun, & a book in my lap... I looked up at the tall trees & felt content. Dan was doing yard work, H was happily playing shed & riding his bike around, Sammie was sunbathing, & it was a lovely, calm scene. We haven't even had words with the neighbors since winter-- hate to admit that I've noticed, but after about eleven years of living across the street from the type of people who occupy a cute house which completely contradicts the personality of its owners... you tend to notice when things have been civil. It's as if there's something missing, but in a good way. Similar to being on vacation when you're out of your regular routine but it's not at all bad.

Dan paused with the lawn mowing to do some tree trimming, so he went to get his small step ladder from H's shed. Suddenly Hayden wasn't very thrilled about this & at first he was just asking for it back, but then he got a little more worked up.

One of the most successful techniques with people with fragile x syndrome is commonly referred to as side dialogue. This basically means speaking with someone else within earshot of the person that you really need to hear what you're saying. Side dialogue will often help them feel less like they're being put on the spot, or expected to follow through with something. And instead, they may think they're the one in control of making the decision to complete a task.

We noticed this before Hayden was even verbal. One day we were in the living room telling someone about a new scarf we bought for him. It was the perfect size for a toddler & happened to match a sweater & beanie hat set he already had. Next thing we knew he went & got the scarf & brought it to us. He was capable of following simple step instructions at the time, for sure, but this is also the sort of thing that he would not want to do if we were to ask him directly. It would mean he would have to stop what he was already doing, get up, go to his room, think which dresser the scarf was in, which drawer, take it out, close the drawer, & bring it to us. A lot of motor planning especially for someone who may feel like they were suddenly put on-the-spot.

Distraction techniques often work well, too. So as Hayden's behavior escalated today I knew it would become more difficult to focus on anything other than the step ladder. So I decided to pet the dog. This is such a bonus tactic now that we have Sammie-- he is especially drawn to her when one of us is petting her, because he wants to join in.

Unfortunately today it didn't work right away. And as this whole scene was occurring-- Dan on the ladder cutting branches, Hayden yelling, & me sitting on the grass petting the dog-- the lady across the street sort of walked into the picture. She was dragging some of their dead branches down the paper street beside our property line, & then throwing them into the woods behind Hayden's shed. It's not exactly as close as it sounds, & technically neither one of us owns that property, but a typical dispute between us often has something to do with the fact that they do not know how to stay on the side of the street that they live on. As I've said before, for a bunch of people who care so much about what their own property looks like, they have a complete & utter disrespect for anyone else's. 

There is not a single neighbor on the street-- past or present-- who they have not been in some sort of dispute with at one point or another. In some ways I kind of feel bad for them because I think the home they have is not the right house for them. They really enjoy gardening & yard work & various outdoor projects, but unfortunately the property they have does not really lend itself very well to such interests. And they are also the only home that is situated quite close to the neighbors on either side of them. Even the people next to them (on both sides) have more "breathing room" than they do. It's sort of like this:

trees & land << house >> house << house >> trees & land
They are the ones in bold.

Also, they can comfortably fit two cars in their driveway but they have four cars plus a boat on a trailer (plus an ATV & a little old tractor). A couple of summers ago they talked about buying some land across the street from the people next to them, to clear part of the woods & build a garage. But the area he had his eye on is privately owned & not for sale. Currently there are three drivers in that household & I remember the first winter they had that extra fourth car. When the snow was too much to keep their overflow parking in the street, they had two cars in the driveway, & two on a gravel area they built for themselves at the foot of the paper street. This is also where they keep the boat & trailer. And again, it is across the street from their house & alongside our property line. If not for the location of their excess modes of transportation, we would have a lovely view of the woods from the oversize sliders next to our dining table. Instead, the shades are almost always drawn so we don't have to look at their crap.

Anyway, that first winter they had the extra car it was particularly harsh & one of the iciest on record. I noticed that the wife & son were consistently parking on the area near the opening of the paper street, while both of the husband's cars were always in the driveway. One day I was out front shoveling the same time as their younger son (the older one moved away several years ago). He's friendly, said hello, & we were chatting for a few minutes. At one point I said, "I hate that you park all the way over there, it is so icy! Why don't you put your car in your driveway?" And he told me it's because his dad has bad knees & nearly fell the other day. I didn't want to point out that clearly his father can not drive both of his cars at the same time, so at the very least he ought to leave one of the driveway spots for his wife or son.

So, returning to the scene today, as the wife was walking down the paper street to go back home she looked at me & said something... which I could tell by her tone was nasty, but I honestly didn't hear what she said. So I told her I couldn't hear her. (In hindsight, big mistake.)

Well with that she said, "Oh, you want me to say it again?" (She emphasized the word "again".) So she repeated, "I said you have more affection for that dog than your own son." 

Just to recap the three of us were outside minding our own business, & out of nowhere she spits this pretty substantial insult at me. I told her they should move because they've overstayed their welcome & she snapped back at me-- something to the effect of-- "trust me Cara, I wish!" And maybe her wish would come true if their house was not for sale by owner for more than $100k above its value. But instead I told her to go drink another & as she was walking in her front door she yelled, "I only say what's true!" (or something along those lines), to which I yelled back that she should go get another bottle.

I do not know if she is actually an alcoholic*, but I do know she drinks & I also know she is a crazy driver. Neither of those statements are my opinion but rather fact, with plenty of evidence to support but that would take up a whole separate blog post. [*Side note: I am not downplaying the seriousness of alcoholism... it is a disease & those who overcome it are always in recovery. But if she is an alcoholic then I pray for her. Because even if she has the personality of a witch (& her boys are grown), at the end of the day she is still a mother of two.]

Just the fact that she spits this stuff out though, out of absolutely nowhere... as if she is instigating a fight? WHY. And why not use a normal insult about someone's intellect or appearance or sexual promiscuity. What the heck is up with this bad parenting slander. And it's not just the wife... they're both nasty, except her husband's style is more passive-aggressive. Although the snow removal incident from January was uncharacteristically in our faces. 

Maybe they are bored. Maybe they just have a Napoleon complex about the size of their front lawn & their driveway (which is absurd, because neither one of those factors necessarily has any bearing on a great house, even if you do live in the country). Or as someone suggested, maybe they simply miss having a dog. Their dog passed a few years ago but she was old & lived a long life. I can not say we miss her pooping on our lawn, though. Or on our deck. Or in our basement. Or the way they would constantly yell her name outside, because she was never on a line or anything. So she would wander around, & they would yell, & our son would mimic them, & he would yell, & inevitably she would poop on our lawn because she was allowed to roam free, & usually they'd pick it up with a shovel & flick it into the woods... but they'd always act like we were being ridiculous for getting mad.

But as far as me & my son are concerned I will say this. Parenting Hayden is hands-down the one thing in my life I am most confident of. I have never & probably will never doubt that I have always done the very best for him. I do not take compliments very well but I know when it comes to that aspect of my life, beyond a shadow of a doubt he & I have an unbreakable bond. He does bring out the best in me-- sometimes he also has the ability to frustrate the heck out of me & perhaps occasionally drain me of my emotional strength, albeit temporarily-- but he definitely brings out the very best in me. And vice versa. I am a strong advocate & a good mom. A very good mom.

Anything to the contrary would be as accurate as saying I do not speak English.

I can not promise that my son won't have another meltdown & that we won't be outside when one happens. He has a genetic reason for not always being in control of his behavior, but we do work with a team of specialists (& always have). They are as committed as we are to helping Hayden learn how to help himself, & to being a successful student, & ultimately a contributing member of society.

And yes, I do love my dog too. Maybe instead of using that against my parenting (?) it would be better to acknowledge that we do not allow her to defecate all over other people's lawns (tiny, manicured, or otherwise).

But there's nothing anyone can say to ever validate an insult to my role as a mom. 

Maybe that is the thing some people are jealous of.

And hopefully side dialogue is effective for them, too.  


Friday, June 10, 2016

A letter to Hayden's Superheroes

This is his last day with all of you. Hayden came to FMB in 2008 for preschool. He leaves now in 2016 headed to the middle school. It would be nearly impossible to thank you for every little thing.

So just off the top of my head...

Thank you for making sure someone wrote in the communication journal even on days when the teacher was out. The anticipation to pull it out of his backpack when he got home never lessened.

And thank you for eight years worth of those parent-teacher communication journals. I appreciate each & every glimpse into his day.

Thank you for literally carrying Hayden into the building when he was in preschool, & went through a major separation anxiety phase at drop-off.

Speaking of preschool, thank you for that video which still gives me chills & tugs at my heartstrings...

Thank you for letting me send in a small supply of applesauce & water-- for years-- for Hayden to keep in the classroom.

Thank you for finding a spot to keep extra clothing at school just in case.  

And for remembering I always put a clean (matching) top in his backpack, if he happened to need a fresh shirt during the day.

Thank you for not only saving his very first tooth when it came out, but for capturing the milestone moment:

Thank you for making sure he had a quiet place to go to when he needed downtime.

Thank you for making sure he had access to appropriate sensory equipment.

Thank you (to say the least) for all the valentine, Halloween, & everything-in-between gifts. (Oh my goodness... the volume of holiday gifts!) 

Thank you...

For easing the transition into kindergarten.

For easing the transition into the regular grade classroom settings thereafter.

For taking a walk with him outside when you sensed the fresh air would do him well.

For administering his medicine in doughnut holes. (For keeping a supply of said doughnut holes.)

For answering all of my (many) emails over the years.

For trusting me with your personal phone numbers. For the all the calls. For all the text messages.

For the regularly scheduled progress meetings. For the impromptu meetings.

For hiding me when it was risky for Hayden to know I was at the school. (Especially the time I was in the closet in the front office so he wouldn't know I was there to spy on him during concert rehearsal.)

For the various articles, brochures, & Hayden/fragile x-related materials you displayed in the front hall over the years.

For allowing me the opportunity to speak with the faculty at the beginning of each school year, during a teacher in-service day.

For welcoming me into your classrooms to speak with Hayden's peers about fragile x syndrome.

For sending home end-of-year flyers to remind everyone about Fragile X Awareness Day over the summer.

For changing the sign in the front of the school to encourage everyone to wear green to show their support on July 22nd. 

For saving & displaying Hayden's Wednesday Wishes in the front hall. 

For coming up with the idea of Wednesday Wishes.

For the book of wishes from everyone else that we will positively cherish forever.

For meeting with me at a yogurt shop, or wherever & whenever, to review his IEP with me.

For attending full-day conferences on your own time during weekends, on more than one occasion, to learn from various specialists in the fragile x community... when they happened to be presenting in NJ or NY.

For participating in consultations with fragile x specialists once at school, & several times via conference call.

For impressing them with your continued eagerness to help Hayden succeed.

For being more than okay with the fact that I practically bombarded you with materials over the years... books, binders, you name it. If it was something that could help you help Hayden, you held your hands out.

For confessing that you have his picture on your refrigerator at home.

For helping him through tough behaviors & smiling beside him during proud moments. 

For chewing minty gum because you noticed the scent calms him.

For always making him feel important & occasionally letting him be in charge. 

For reassuring us, especially during the many administrative changes over the years, & the frequent rotation of case managers, that in the end everything would be okay. And if it wasn't okay, then it was not the end.

For teaching me how to appropriately advocate for my son.

For supporting him both in & out of the classroom.

It seems silly to say thank you because it sounds too simple of a courtesy...

All we expected was that you would welcome Hayden inside & help him learn.

Pardon my language but you damn near rolled out a red carpet. 

You did not simply provide Hayden an early education. You nurtured, respected, & encouraged him. You accepted opportunity after opportunity, & continued to recognize capabilities we didn't even know he had. You were the team that stood behind him, or beside him, & looked at him with pride in your eyes. Even when he struggled... you knew he was trying, you knew he could overcome, & you knew he could always progress. 

When I picture Hayden as a preschooler I think of my blond, curly-haired, big-brown-eyed, non-verbal three year old wearing a bucket hat, high top sneakers with orthotics up to his ankles, & an absolutely enormous grin.

I feel like I snapped my fingers & he was in kindergarten. And then I blinked & he was in first grade. And before I knew it we were preparing him for the middle school transition. 

All I know is he went from that little guy to this big kid & his smile never left his face.

Because of you.

So please know when I say thank you, it is only because I do not know a more profound greeting.

Most of you have said Hayden will always have a piece of your heart, & I just wanted to tell you the feeling is mutual. I promise.