It’s Going OK, I Think

The Boy went to band camp for three hours on Monday evening, and it went ok, I think. I never know for sure, because he isn’t quite verbal. But a friend’s son said he did “pretty good,” for which I thanked him – I’d have no idea without that concise report.

He was excited to go – gave me no problems leaving summer day camp, and was patient when the plan changed slightly (the band was not in the cafeteria when he arrived, as expected). We waited for them to finish rehearsal on the practice field, and then located his friend. I told him to hang out with him, he would show The Boy where to go and what to do, and then I left.

It was a weird feeling. We’re not used to this organized activity thing.

I went back to pick him up a few hours later, and was glad to see I wasn’t the only parent unsure of the protocol. Do we stand by our cars and wait? Do we approach the field as they are finishing up? Do we halfheartedly check Facebook in our cars while watching for our children out of the corner of our eyes?

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While I didn’t want to embarrass him, I ended up waiting until they were released and waiting by the edge of the field to make sure he remembered to grab all of his things.

And it worked out ok. He was happy, grabbed all of his stuff, and when he came home, practiced his tuba for a bit more, no doubt scripting the band director cues and admonitions (because incorrect articulations are an obsession, right now).

I hope this continues. I hope he can get the feeling of belonging that comes with being in a group like this. I hope we’ve worked out a decent compromise. I think it’s going to be ok.

 

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The Man, a Cargo Van, and IKEA

The Man and I are traveling this week.  Just an overnighter to help a friend’s daughter move from her parents’ house to a deluxe apartment in the sky in a big city about six hours away from us.  We’ll be traveling by cargo van, and staying in a moderately priced hotel, with a quick trip to IKEA the following morning, and hopefully returning home with a new couch.

I know, luxurious, right?

It’s no honeymoon, but I know we’ll still have a good time.  We like spending time together, even while working or doing menial tasks, and he actually loves to drive.  I can’t wait to hit IKEA, one of the things I miss most about living up north.  When the closest one is six hours away, you appreciate it so much more.

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And I can’t wait to have a couch!  We’ve been sitting in chairs every evening, and even though The Man loves his recliner, I’m ready to relax, and stretch out.

We’ll mix a little work with a little fun, and my parents will stay with The Boy – a little changeup to our routine.  Enough to make it interesting, but not too much to throw us off.  This is the life.  🙂

Camp’s End

Today is The Boy’s last day of summer day camp, and he said yesterday that he will miss it.  We’ve come a long way from it not being just like ESY, and the battles to get him out the door because he couldn’t use a computer there.

With the end of his summer routine comes anxiety, both the good and bad kinds.  He is excited to start school, and we meet with his new principal next Tuesday to see the school and get a feel for how his days will run.  Of course they are still working on his schedule and reviewing his IEP to see how they are going to have to meet it, for 30 days at least…

His dad will most likely not be taking him for his summer visitation at all, so The Boy has two weeks until the new school routine starts.  He wants to get in last trips to the water park, the beach, and all of those activities which require free time.  We’re also going to be looking at some used bikes this weekend, so he can continue to ride around the neighborhood with his new buddies.

And of course, I have anxiety about this new school and whether or not they will be able to meet his needs.  Will we be able to work out our work and school schedules?  What will they try to change when the 30 days is up, and how hard will I have to fight?

Deep breath…

Whatever comes, we can handle it.  He didn’t like camp at first, and now he is going to miss it.  Me too.

hanging out

How Our Lives Have Changed: 3 Weeks

We’ve been in our new state, our new town, our new home for a little over three weeks.  In that time, we have moved in, started summer camp, and gotten married.  And we have settled in for the most part.  The Boy rebelled a bit for awhile when his camp turned out not to be exactly like his usual ESY experience, but he found some activities to love, and now looks forward to it each day.  I am desperately trying to find some form of employment, and unpacking and getting the house in order in the meantime, checking things off of my to-do list which has grown to several legal pad pages.  I have also been battling government offices to get my name changed, and to just get a driver’s license.  These things really shouldn’t be so hard when you are clearly a law-abiding citizen, but I digress…

The Ocean is Just Down the RoadOne of the most pleasant changes in our lives has been the proximity to Grammy and Poppy.  Besides being fabulous grandparents, they are also awesome parents, and great friends.  It has been exceptionally nice to have a girl’s afternoon with my mom here and there, and The Boy has enjoyed hanging out at their place in the afternoons, after camp.  As a former single mom who was never able to leave the house alone without the aid of a babysitter (and the requisite money involved), The Boy’s regular Saturday Night Sleepover at Grammy’s still brings tears to my eyes because I am just so grateful.  Every couple needs time alone, and this weekly respite is already oh-so-special.

The flip-side of this is that there are a lot more people in our lives on a daily basis, and this has taken a bit of getting used to.  We have to check with people now before we make decisions, and more compromise and flexibility are necessary every day.  This isn’t a bad thing, and it isn’t unexpected, but it is an adjustment.

We miss our friends, and I miss having adults to talk to, but this is no different from any other summer, for me.  I’m starting to have a hard time with not having something to do each day — I’m one of those people that needs to feel like I’m accomplishing something, and organizing my desk and hanging a few pictures just don’t qualify as “accomplishments”.  I’m trying to practice patience and perseverance in the job search.  Trying.

All in all, we are very happy.  The Boy is counting down the days until school starts, and is very excited.  I’m loving the summer sun and heat, reveling in the proximity of my loved ones, and enjoying being a newlywed.

Cheers! 😀

Lost in the Shuffle

A lineup The Boy had me capture at camp

A lineup The Boy had me capture at camp

The Man and I are both feeling like The Boy is suffering from a lack of attention, lately.  We’re trying to compensate, but if you think about it, we needed him rather out-of-the-way for the move and the unpacking, and now the wedding is upon us.  The Boy has rolled with everything relatively well, although his summer day camp turned out to be more different than his previous ESY program than he thought was manageable — we’re still working on it.  Upset by the startling lack of computers at the camp, he was mollified a bit by the introduction of his own netbook at home on which he can make PowerPoints.

And of course, Grammy and Poppy have been amazingly accommodating, letting The Boy hang out at their place, and keeping an eye on him while I run errands as we get the house unpacked and ready for guests this weekend.

But both The Man and I feel as if we’ve made some promises on which we haven’t yet followed through, and we’re feeling a little guilty.  We talked about a new bike when we donated his old one (which was way too small), as well as a new boogie board, and a new “wrestling” mat.  He’s even supposed to get a new Captain-style bed, which The Man will make for him (The Boy likes to call it a “Hidey-hole” bed, because it will have a hiding space underneath), but it hasn’t happened yet.

We try to put it in perspective, and he hasn’t been complaining, but…  Those nagging feelings of guilt.  The Man and I are both people to whom a promise is no small thing, and we will follow through.  In the meantime, we have to make sure to spend time with him (even when he just wants to hole up in room with an electronic device).  Luckily, he’s been a great sport, and luckily spending time with him is something we can definitely do right now.

Moving House: The Boy

You are probably wondering how The Boy has done, seeing as autism and any kind of change don’t generally mix well, and moving house is a change in a league all of its own.  The short answer is that he has done amazingly well!

Here’s what I think helped:

Grammy and Poppy were there to help ease the transition.  The Boy loves his grandparents, and they are a constant in his life.  Having them come up to help with the move helped remind him of what he had to look forward to — more time with his grandparents!  They are also a little less threatening than Mom, so Grammy helped him pack up his room, which calmed his fears that we were getting rid of all of his stuff!

Preparation.  We’ve been prepping the Boy for almost a year, first introducing it as an idea, and then gradually replacing the “Wouldn’t it be cool if…?” with “Won’t it be fun when we…?”  We addressed each of his fears as they came up, and made sure not to make light of them.  We also spent a lot of time focusing on the positives.

The Moving Book.  Anytime I heard him start to fret about the move, I made sure to pull out the moving book (or at least made a point to remember to do that at a quiet part of the day).  It really did seem to calm his fears, I think because it worked as a visual cue to address his fears and remind him of the positives, and visual cues really work.

Addressing his biggest fear ASAP.  One of The Boy’s biggest concerns was missing his ESY program.  As quickly as I could, I found a similar program in our new state.  Because of the timing of our move, I didn’t think I’d be able to get him into one provided by his school district, and truth be told, finding one that was going to be the right fit was a bit of a challenge.  But in a totally coincidental way, we (I say we because Grammy helped a bunch on this front) found a summer day camp for kids with autism and their siblings in our new area that was relatively affordable and got him enrolled ASAP so that he would have a replacement for the program he cared so much about.  He went from whimpering about missing ESY to being excited about Camp SMILE.  And because he attends daily, it is a new and immediate routine, and provides him with an opportunity to make new friends (one of his other biggest concerns).

His room is still full of boxes, as most of them are, and he’s been wearing his new Spongebob hoodie just about everyday (he tends toward clothing exclusivity when stressed), but he really has made an excellent transition, and I am so proud and happy for him.

moving!

We’re Back…

Hello, Everyone!

I am so excited to be back!  The Boy starts his summer camp today and is so excited — it is absolutely adorable (if pre-teens can be adorable).  He picked out what he was going to wear a couple of days ago, even in the midst of the chaos of unpacked boxes here at the new house.  I told him this morning that he needed to have his backpack today and he would need to clean it out, so he was on it within seconds!

The moving process itself was not nearly as stressful as it could have been — it really helps to have a fiance who used to have a moving business.  Dealing with the landlord is still giving me a headache, but the end is in sight.  I’m sure I’ll post more on that whole topic later.

Modern Social Security card.

Right now, I am in the midst of a brand new headache — trying to get setup with my new address.  I’m stuck in a never-ending cycle between needing a driver’s license, and needing a social security card, and another form of ID…  Except that I just moved here — AND I’m getting married!  Of course they couldn’t make it too easy, or everyone would move here – right? 😉

Finally, we’re getting details nailed down for the wedding which is NEXT FRIDAY – Can you believe it?  I certainly can’t.  The Man is getting himself used to calling me his wife (introducing me to neighbors and such), and it’s still such a foreign word.  But I like it.  We ordered our rings, changed our venue last minute (from one free city park gazebo to another free city park gazebo), and even checked out a few restaurants downtown, looking at menus and deciding on one which would work best.  All that’s left is to get the license and decide on what we’re going to say…

There are so, so many things on my list of things to do (like get a job!), but I am so glad to be back up and running here.  I hope you’ve all hung in there, because this transition is going to be a bit of a wild ride.  But I am so excited!

IEPs, and Moving Trucks, and Appointments, Oh My!

Tomorrow, The Boy’s IEP team meets.  I am extremely lucky to have teachers that get him, and fight for what he truly needs, and a school system that allows us to make the best decisions for him that are not based on the almighty dollar.  I know many districts are not like that (ahemsome rather intimately…), and I know this isn’t the typical IEP experience.  I’m a little nervous about this being the last IEP meeting where I do not have to fight tooth and nail for my son.

kid to do list, list, Be happy and go home

kid to do list, Carissa GoodNCrazy

I also have to make arrangements and get things done — no rest for the wicked on this day.  Securing a rental truck for our big move, speaking to our wedding officiant, doing paperwork for The Boy’s summer day camp… The list goes on and on.

And finally, thanks to our super-accomodating pediatric office (*sarcasm*), I have to pull The Boy out of school at the end of the day, causing him to have to miss Kids Club for his physical appointment.  We’ve prepped him (both at home and at school – I LOVE his teacher!), and he should be OK, but you just never know.  I’ve built in a few treats after the appointment (a trip to Target, and dinner at his favorite restaurant) so that he has “good stuff” to look forward to and get him through.

And so… When I am busy like this, it’s easy to get overwhelmed, but I’m actually doing OK.  I enjoy having a list of things to do, and especially relish the crossing-off of the things on the to-do list.  I feel like every “check!” is bringing us closer to family, summer, and the beginning of something beautiful.

I Hate that Sound…

frustration

frustration by Sean MacEntee

One of the worst sounds to my ears is the sound of The Boy expressing frustration.  Partly because, if left unchecked, it could lead to a meltdown, or perseveration on some negative thing.  But mostly because he is 11, and I have tried and tried for years to teach him to ask for help when he gets frustrated, and instead he continues to do this thing…  This “ARGGHHHH!” thing, to which I think I am supposed to come running and solve his problem.  Or the extremely loud self-talk that sometimes accompanies it (but which I can’t understand, because it is often coming from the basement).  I don’t ever respond, except to say, “Do you need help?”  I rarely get a response, just more “ARGGGGHHHH!” and indistinguishable self-talk.  Beyond that question, I do not respond, knowing that if I do, he will learn that I will try to anticipate his every need, and instead, I want him to learn to communicate his needs and ask for help, even when frustrated.

And so, I will wait him out, turning on some music to drown out the “ARGGGGGHHHH!” until he comes to me of his own accord, or gets interested in something else.

But that noise is just about the worst…

No Need to be Nasty

Waiting Room by Melissa Venable

Waiting Room by Melissa Venable

The camp that I’d like to send The Boy to this summer, in lieu of ESY has an 11 page application, part of which must be filled out by his physician. We were just at his doctor’s office last week, getting his booster, but when I approached the desk to ask about getting this filled out, no one seemed interested in helping me, and rather than stand there like an idiot, I decided to leave and call about it later. I called today, and politely explained to the woman on the other end of the phone that I needed to get this paperwork filled out by May 10. She responded that the doctors in the practice didn’t “just do that”, meaning fill out paperwork for camps and such, and that we would have to have a physical. I expected this, and when she asked when his last physical was, I told her August, and she then replied that he would have to wait until a year after that physical, and went to disconnect the phone! I raised my voice slightly, explaining that we were moving in June, so waiting until August was an impossibility, and that I had spoken to someone in her office who had said that it depended on our insurance when another physical could be done. I assured her that we were in the clear according to our insurance, and could we schedule a later appointment for this, due to my son having autism, and hating to miss school? She grudgingly offered up a 3:30 appointment in May, and I asked if there was anything later in the day, as The Boy is still in school at that time. She responded that that was the latest appointment she had before our deadline, adding that the late appointments fill up fast because everyone wants them after school.

I shouldn’t have to fight for an appointment! I shouldn’t have to raise my voice to get the service that I need! If you would like my son to be having a meltdown when he comes for his physical, than by all means, continue to be flippant with me about how everyone wants late appointments!

This is not the first time I have had issue with the office staff in this practice. Two summers ago, I was running a summer camp, and couldn’t leave until the last camper had been picked up. Of course, I had The Boy with me because we had an appointment scheduled about 30 minutes after camp was over. Unfortunately, the parent of this camper was extremely late. I called the office after he had finally been picked up, and explained that I would be 10 or 15 minutes late, knowing that usually one waits at least 45 minutes to see an actual doctor. The staff member proceeded to lecture me about being late, and that they would have to cancel my appointment. I pressed the issue, saying that we would be right there, and couldn’t we just keep our appointment time, and she lectured me again about being responsible about keeping appointment times, refusing to see us. I swore I wouldn’t go back, but when you have a child with special needs, finding a doctor who understands your child’s background is essential, and you often have to make compromises.

I can remember loving the dentist I had as a child, and hating his office staff and his dental hygienists with a passion. And we actually did leave the practice of The Boy’s first dentist because they couldn’t be flexible with appointment times.

Don’t these people understand that they drive people away when they treat them this way? They create anxiety in the patient, and they create mistrust with the patient’s caregiver, namely me! And in these days and times of social media, consumers have no compunction about telling all and sundry about their experiences with your business, especially if they were negative. I just don’t understand how they get away with it, and I’m glad I won’t have to be dealing with this particular office staff again!