First Day of School,Take II

School has always been something Beanie has loved, even with the number of times she has been the “new kid.”  She has always gotten excited about going, and she has always chattered endlessly about her friends and about science class.

But this year, something changed.

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Beanie has always gotten into mischief, but she started getting bad reports daily.  And her behaviors went from “normal” trouble-maker limit-testing, to hitting and screaming.  Instead of talking about her friends, she made up a bunch of imaginary friends.  She still enjoyed doing her homework and going to piano lessons, but she began throwing tantrums when it was time for school.

With her ARD meeting coming up (those are called IEP meetings in the other 49 states), I had a lot of correspondence with her case manager.  I learned that Beanie was screaming in class nearly everyday, in spite of the added supports and sensory diet they had her on.  She was needing an aide 4 hours out of the day, instead of the 30 minutes she had needed before.  And the kids were less interested in hanging out with her, due to her screaming.  And all of this was affecting her academically–her reading level dropped from a level F to a level B.

I have to admit I was nervous.  I knew that this was not the best situation for my daughter, but what would be? She really wouldn’t benefit from a resource room, where she would go for smaller reading, writing, and math classes.  She’s not very far behind academically, and this wouldn’t solve the problem of The Rest of The Day.

And she really didn’t belong in a life skills program, which would be a special class just for kids with autism, where she would learn cooking and other independent living skills.  This wasn’t the place for a kid with above average intelligence.

And she certainly wasn’t going into a behavioral program, where she would copy the misbehaviors of her classmates.

Those were the three options I was familiar with.  And I knew that the resource room was the only  one I would be willing to entertain at all.

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So I was worried, but not surprised, when her principal called me.  She took a long time preparing me, which only increased my nervousness and defensiveness (which I suppressed quite well!).  So imagine my surprise when she told me about a program I had never heard of!  Their district has a self-contained classroom for kids who have severe speech and language disorders.  Beanie would be in a class with no more than 5 kids, would get lots of one-on-one time with her teacher, would learn her academics but really focus on getting caught up with her speech, and would be worked back into general education classes, until she would eventually be ready to return to her neighborhood school.

All of my defensiveness was replaced with the question, “How soon can we start?”

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Beanie was hesitant to visit the classroom, but once she saw the puppets in the “break” area and the stretchy therapy swing, she was sold.  Since Beanie is above grade level in math and science, she would be in a general education class, with support, for those subjects.  She would also go to P.E., music, and art with her general education class.  She would work on speech,  reading, writing, and social studies with her special education class.  The speech therapist would come into the room to work with her and the other students, and the class would visit the large motor lab on a regular basis.

Beanie met her special ed teacher, her aide, her general education teacher, and her speech therapist.  She then led everyone on a search to find and meet the principal.  And she charmed every one of them.

Beanie rides the bus to her new school, but it gets her home in time to make it to her piano lesson on her old school on Wednesdays.

So how did her first day of school go?  Beanie came home with a very good report and a smile on her face.  She couldn’t wait to tell us about her new friend in her class, and she was eager to go back.

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And thus, the charmed life of the Bean continues.

 

 

 

 

 

 

 

 

 

 

 

 

Life With a Bean

Living with the Bean is certainly not boring.  Nor is it always conducive to having a productive day, packing.

Case in point: two days ago.

Rob and I woke up with high ambitions.  We discussed our plans over coffee: begin the day by going to the bank and getting a new ATM card (oh, yeah–we lost my wallet somewhere in our decluttering adventures.  Hopefully it will turn back up!) taking a carload to Goodwill, then filling up the car so that another load could go the next day.  We hoped to have more rooms emptied out. 

Well.  First, enter the flying ants.  The previous day, when Rob was cleaning out his hopelessly cluttered workshop, they kept biting him, leaving horrible welts.  Now, remember that Beanie encountered fire ants last spring.  After such an exposure to ant venom, she has developed an apparent sensitivity.

So, there Beanie was–while we were making plans–lying on the floor in the hallway, whimpering.  On her back was a huge, infected bump, surrounded by other obvious ant bites.  The flying ant had found his way into her bedroom.

I will spare you the details, but the bump needed to be dealt with.  Which was hugely upsetting for us, and even moreso for the Bean.

We snuggled her, and set her up in front of the laptop, with some They Might Be Giants podcasts playing.  The Goodwill trip wasn’t going to happen right away, so I started hauling some items out to the motor home.  When I approached the house, to get the next load, I heard Beanie crying.

Inside, Rob was snuggling Beanie, sitting next to the linoleum kitchen floor.  Beanie had thrown up.

After cleaning it up, Rob told me that it had looked like coffee grounds were in it.  He wondered if she had eaten dirt.  I consulted Dr. Google, and learned that this was actually blood, and was horrified by the litany of serious ailments this could be.

I was afraid that we were in for another trip to the E.R.

But then, in small, non-highlighted print, it said “GERD.”  It turns out that minor bleeds are quite common with GERD.  Beanie has had a number of reflux episodes lately, as we have not been as careful with her diet as we should be (actually, we were challenging to see if she had outgrown it, which apparently she has not.  I think she’s a lifer).  After more research and phone calls, I learned that the little bit we saw did not make this an emergency.  So we watched her, figuring that being upset from the ant bite caused her to have an episode.  She did not throw up again and gradually got her energy back.

So, by the afternoon, we knew we would be safe to make a Goodwill run.  First, we stopped at the food co-op to drop off two bicycles, with “free” signs on them.  Seeing where we were, Beanie insisted on going inside.  And she did not feel that a trip there was complete, without making a purchase.  So I armed Beanie with a dollar, and she selected 4 miniature organic chocolates.

Off we proceeded to Goodwill.  After we dropped off our donations, Rob decided that he could benefit from buying some shorts that actually still had buttons.  So we drove around to the front.

Then we looked into the backseat.

Beanie’s face and arms were completely covered in melted chocolate.  In true SPD style, she decided that the candy bars would make an excellent facial treatment.  She was in the process of licking it off her arm, and took offense to being called “chocolate monster.”

In the end, Rob found a shirt and shorts.  And Beanie didn’t have time to get ornery or get into mischief while he was shopping, because she was busy getting cleaned off in the restroom.

And I got a few more grey hairs…

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Pessimism vs. Realism

We’re often reminded to “prepare for the worst, and hope for the best.” The thinking is, that, with that kind of mindset, we can only be pleasantly surprised, not disappointed. We call this a “realistic” mindset.

But is it? And does it really do us any good?

When we prepare for the worst, and view the worst case scenario as being realistic, we accept it before it really happens. Whether it comes to be or not, we experience it.

We’re not blindsided everytime something bad has the potential to happen, because the bad thing often does not happen. And being blindsided occasionally is much better than experiencing the worst case scenario everytime.

Case in point: My daughter’s IEP meeting was today. Last fall, I had requested that she be tested for autism spectrum disorder. I thought I was addressing the elephant in the room. I thought I was seeing her fall further and further behind–because I was prepared for the worst, I only saw the worst. I saw her challenges, magnified.

This led to stress in our family, to needless worrying, and to fear. I blamed myself, because I was in the car accident while pregnant, the delivery was difficult, and I am not the perfect mother. When she played with other children, I only saw how different she was, from them.

Realistic? Partially. Only partially. And today I got a good dose of reality. Real, true reality.

It began with the speech report. Last time she was tested, she was 3 years old and functioning at a 15 month old level, across the board. Now she is up to grade level in a few areas, and only slightly below in most others. Her intelligence and academic skills are above average. Her fine motor and sensory needs have improved significantly. She has a number of social skills deficits, but they are all things that can be taught.

The Bean does not have autism. There never was any elephant in the room.

Next year, she will get visuals in the classroom, as well as speech, OT, a sensory diet, and social worker services. She is expected to “catch up” completely, in due time.

So, did accepting the worst case scenario benefit me? Not really. It was nice to be surprised today, but my negative perspective was not realistic at all. I saw only Beanie’s challenges, not her growth. I saw only one side of the coin.

And I believe that I suffered at least as much as I would have been, had I expected the best outcome, and gotten blindsided today.

Pessimism is not realism. The worst case scenario is not the realistic scenario. Having a pessimistic perspective is akin to worrying–it causes us needless anxiety, that is much worse than the event itself.

We need to realize that reality does involve a bit of sunshine.

Sunshine : Sunny Sunshine

Labels

So, by the end of the year, my Jelly Bean will most likely be labeled as being on the autism spectrum.

It’s important to see that for what it is.

It’s putting a name to a set of characteristics that cause her to need support in school. It’s not adding anything new. It’s not changing anything about her. We already knew–have known–that Beanie has difficulties with receptive and expressive language, is “young for her age,” and has sensory and fine motor issues. We’ve already grieved the fact that our daughter will be facing these challenges. We were well through that process when I began writing this blog.

But do you remember how I introduced Beanie to all of you? I didn’t tell you about her disability right away, because I didn’t want that to be the first thing you knew about her. The most important–the most obvious–thing about my Beanie is that she is a gorgeous, charming kid who seems destined to live a perfect life.

She’s still the kid who got all of Manistee dancing. She’s still the little charmer who walks right up to kids, in port towns, and says “hi!” She’s still a child who is being raised minimalistically, and is far more attached to people than to things.

And the label will not change that.

I think the autism label is especially difficult, because our understanding of the disability is evolving so quickly that we don’t fully understand it ourselves. Even in the education field, the word “autism” brings with it a picture of a complete person–a stereotype, actually, although nobody intends it to be that.

Beanie may be on the autism spectrum, but that doesn’t mean that she doesn’t connect with other people (a funny assumption anyway, because I’ve always connected the best with my students who are on the spectrum). It doesn’t mean that she is overly concerned about her possessions, or bonding with them more than other humans (I wonder why she doesn’t have that characteristic…). It doesn’t mean that she lacks an imagination.

Most importantly, this label will not change the way we are raising her. We’re still not going to overload her with possessions and electronic toys. She still sleeps in a sleeping bag in the basement. We still won’t buy a television. We’re still going to spend as much time teaching her about the value or being intentional and living simply, as we spend working on her therapy tasks. We’re still going to sail and live aboard next summer.

There are things in our life that are more important than labels.

Movie Day!

2-3 times a year, Beanie’s private therapy clinic hosts a “modified viewing” of a children’s movie at the local movie theater. The show starts before the cinema actually opens, so it’s just therapy kids there. You prepay and order a “snack pack,” which is a tray with popcorn, candy, and a drink, and is ready for you when you arrive. They play the movie with no previews, the lights are on but dimmed, and the sound is lower than usual. And–the best part–is that it’s all kids with special needs there. So there is some talking, especially after everyone has finished their popcorn. Kids are welcome to walk around–a lot of them got some PT practice in by going up and down the steps. There were some kids who got upset, but nobody gave them dirty looks. It was a nice low-pressure, fun outing!

The movie was “The Chipmunks–Chipwrecked,” which was…well…it was what it was… It was more the experience of “going to the movies” that was important to the Bean. She perched in her seat, like a little lady, eating her popcorn and drinking her tea. Occasionally she would cheer for the chipmunks, which she thought were hilarious. After she finished her food, we walked up to the front, to see the BIG chipmunks up close, then walked back to sit down, a few times. All in all, it was fun experience. Afterwards, Beanie kept raising her fist in a air and yelling, “Chipmunks!”


Sensory Diet Away From Home

We had Beanie in a great routine during the school year, but it began to fall apart as we began spending more time at the marina. We’ve had to make some changes and use a little creativity, so that we could continue working with her in every area at the boat. I’ll share a little about what we’re doing for OT (other than sensory), PT, and speech later. Right now, I would like to tell you how our sensory diet works at the boat.

First, the brushing and joint compressions work the same. She begins each morning with potty time and breakfast. At 10:00, we brush, “bump,” then head out to swing.

The swinging is a little tricky. We clip both ends of a hammock together, to make a therapy swing. We walk over to the playground, where I can hook the swing underneath the rings. We swing for 15 minutes, then spin and bounce for 5 minutes.

We require Beanie to wear a life jacket whenever she is not in the cabin of the boat. She really enjoys it and insists on wearing it at all times, even when she sleeps! We’ve found that the weight and compression from the life vest really seem to calm Beanie and help her focus. In fact, I mentioned this to her OT, who has started having the Bean wear a weighted compression vest at therapy.

Just being on the boat is also a sensory activity for the Bean! Even at dock, there is constant vestibular input. She is much more organized and focused when we’re been staying on the boat.

During the day, when it is warm out, we go to the pool. This is excellent tactile and proprioceptive stimulation!

At the marina, we often go barefoot, which is also some good tactile stimulation!

We repeat our brushing/”bumps”/swinging after naptime, around 3:00. Then, it’s more brushes and bumps at bedtime. All of this leads to a very happy, focused Bean, no matter where we are!

Saturday Simple Playtime: The Bubble Trick

In the summer, we visit a lot of friends and family. And Beanie can get very antsy during these visits. The television only gets her so far–even if we do watch Shaun the Sheep! She wants to run around, getting into things she shouldn’t.

Beanie’s speech therapist showed me an activity that calms most kids and keeps them quietly engaged for great lengths of time. This can be a messy activity, so it’s great to use during those outside visits! If the adults are sitting on the patio, visiting, I’ll set Beanie up on the grass.

First, you fill a plastic cup or bottle halfway or more with water. Then you add a few tablespoons of dish soap. You will need a straw, and those big, fun straws seem to work better. The Bean’s speech therapist put the cup in a large bowl when we played with the bubbles inside. You could also use a dishpan. When we go outside, we just set the cup on the grass.

So, now that you’re set up, it’s time to blow the bubbles! When you blow with the straw, you will instantly get a bubble mountain. You can demonstrate popping the bubbles, blowing some in the air, or placing them on your hands, cheeks, or nose. Beanie also enjoys giving rubber duckies bubble baths.

Bubbles have a calming effect on most kids, whether they have SPD or not. We’ve found that this activity works like magic and makes visits much less stressful.