Juggling. And Then Dropping the Ball (or two or three)

Photo credit: https://www.quantamagazine.org/the-mathematics-of-juggling-20170524/

I didn’t realize how dependent I am on my planner until I was without the first two+ weeks of the year. The one I ordered finally came yesterday after a shipping snafu. I had a small paper January calendar where I could keep track of big things like appointments, but the daily place to write down didn’t exist. I tried using a piece of notebook paper to keep a running list, but it just wasn’t the same and I dropped several balls.

To be fair, it’s been pretty busy here. For one, BabyGirl has cavities. Four of them. Technically I should say had cavities. We’ve been to the dentist twice in the last week to get them taken care of. The first two were done a week ago and she bit her cheek quite a bit while it was numb. This resulted in a swollen cheek for several days and a visit to the doctor to make sure the puffy, white spots on that cheek were not an abscess. They weren’t, but it was so bad her teacher at school was emailing me and sent her to the school nurse. The appointments more or less took up two and a half days of time. Today we had visit number two and after talking to the dentist about the problems we had, they at least gave us those cotton rolls you can put inside your cheek. She mostly held that in-between her teeth, and she’s doing much better tonight.

Then it’s re-chartering time for the Boy Scouts. Being the Committee Chair means the job falls to me. I get to harass people until they’ve either completed Youth Protection training or their applications. Not so much fun. I’ve also got to plan for our committee meeting and several Boards of Review for rank advancement.

Our move is in a weird limbo, where we don’t know what the timing will be. This means we’ve got auditions for activities like chorus, school plays, county concerts, etc. This has taken up a surprising number of Saturdays. At this point I suspect we’ll be here until the end of the school year.

Whirlwind had a consult regarding his wisdom teeth which are coming in. And after three intensive days, he FINALLY finished his college essays for two schools with a February 1 deadline. It was mentally exhausting. We had a lot of debating on how much he should write about his Aspergers and ADHD. In the end he talked about his efforts to learn to focus without ADHD medication in two essays and why he felt his Aspergers was an advantage in one of those.

The balls I dropped? Getting a new passport for Whirlwind, completing medical forms for Acroboy, paying a couple of bills I had forgotten about until a final notice came, making two different doctors appointments for Princess Ballerina and myself, and making an appointment to color my gray roots to name just a few. As I catch up with my planner I am sure I will continue to find more things I’ve forgotten. I’m going to remember DONE is better than perfect and keep pressing forward. Things may not have gotten done in a timely manner, but I’m going to get them off my list one item at a time.

Side note: the picture link leads to an oddly interesting article about the mathematics of juggling. Who knew?

Happy Holidays and New Year!

I give up. I give up on perfection. Real life is hard. Real life leaves you with five minutes here and there to tackle things you want to do. Real life leaves little room for perfection.

I give up on long blog posts and schedules for the moment. We’re here, we’re still kicking and moving forward one step at a time.

New Years resolutions? 1) Get a CPAP machine to deal with my sleep apnea (no wonder I’ve been so tired the last two years). 2) Remember DONE is better than PERFECT.

So expect little snippets and posts from me for the time being. If I have an awesome day, I may post a flashback or a crafty post. Expect the only perfection I will be striving for is to love God and my family to the best of my ability in any given moment.

Will those efforts be perfect?

No.

I recognize I will fall short 99.9% of the time, and that is okay. That is where God’s grace enters the picture. I firmly believe we should do all we can to be like Jesus, but I also know we are all mortal and as such we could never cross the great divide on our own. We need the Savior for that.

So this year, DONE is better than perfect. Dusting myself off and starting again is okay. The point is to keep going, keep moving forward and recognize what truly is important.

Happy New Year! May you have a fruitful and fulfilling year.

Just When You Think You’re Gaining Traction…

Just when you think you’re gaining traction, you find out it’s 95% likely that you’ll move.

To another state.

Into a smaller home.

And school is starting soon.

I still have plenty of posts planned for the future.  And if I can manage it, I’ll continue my putting up Throwback Thursday posts for new content for you (my readers) to peruse.  The nature of this change means that for the next two months, my attention has to be on getting my family ready for this move.  Transitions and change can be tricky for anyone, but especially kids on the Autism Spectrum.  We’ve already had one meltdown over this move.

Hang in there with me please.  I’ll try to post as I am able.   My plan to declutter my home this fall has been moved up in timeline and condensed.  I still have my scouting responsibilities, and I’m trying to wrap up my commitments and responsibilities with everything else we do.

Oh, and BabyGirl got the common childhood illness of pinworms.  So now I have to change and wash bedding on a daily basis as well as sanitize my home.  Joy oh joy.

Wish me luck!

 

 

Throwback Thursday–10/27/13 Autism Hat Tutorial

Autism Hat.jpg

 

For a while now I’ve been contemplating making something that would possibly make my life a little easier.  I’ve had enough meltdowns on outings with my ASD kids to know I wanted to do something to indicate we are an Autism family.  I also wanted it to be an item I could keep in my car or diaper bag and pull out if we had an unplanned excursion.  (Those are the kind that prompt the most meltdowns).

There are great t-shirts out there, but those would be wearable once and then need to be washed.  I would also have to get it back into the bag/car after it was washed. (Which might be a challenge since I’ve forgotten to restock diapers for the baby from time to time).  I also wanted to have whatever I made available for daily use on our vacation to Disney World.

I thought about creating vests out of lightweight material, and I may still do that, but another crafter on the fabric store suggested hats to me.  This made total sense to me since I need to have all the kids pack hats for the Florida sun anyway.  I checked out the store and they both painters caps and plain baseball caps.

I found this awesome puzzle piece flannel in the fabric store.  Multi-colored puzzle pieces are a symbol for Autism, so this was perfect for my needs.

I used my silhouette cameo with a fabric blade and iron-on interfacing.  Flannel is thicker, so I found the canvas setting worked well.  I used a downloaded Mickey head and turned it into a cut file using my silhouette software.  I cut three from the fabric. You can’t really see two cut Mickeys with this photo, but they were there.

To iron on the Mickey head, I needed to support the inside of the ball cap. I first used a wadded up pair of jeans I was repairing.  It didn’t give enough support.  Then I used a folded towel which worked much better.

I looked high and low to find the right scale letters for my hats.  I also bought a fabric paint pen.  The fabric paint pen didn’t give me the look I wanted, and I was lucky enough to find what I needed at Hobby Lobby.  They are JOY brand Baby Monogram Letters and Numbers.  You can find them here.

I laid out the letters first on the hat (which was a bit tricky), then figuring out where the T needed to be more or less centered, I started ironing down letters.  I found it easiest to keep working in one direction with the letters since the iron had heated up the fabric and made the glue on the letters start to warm up a little.

By the way, the dark spot you see above the Mickey head in the picture below?  It was wet there where I had wiped away the fabric paint.  The fabric paint really didn’t work as well, though I don’t have a picture to prove it to you.

The finished blue cap.

For the record, the painters cap really didn’t have enough room to use any letters, so I left it plain.

The white baseball cap with a bit more embellishment.

 

I was overall pleased with the end result.  I had the kids wear the caps to the Disney and instead of glares, I got smiles and patience.  Acroboy wore his cap and sat front and center at Turtle Talk With Crush and he was chosen to talk to Crush.  (Boy!  Was he excited!).  I’m not sure if it was because of the hat or where he had chosen to sit, but he was thrilled none-the-less.

I think the hats also were a blessing when he got himself lost for a few minutes.  He found a parent with kids (like we’ve trained the kids to do), and they were talking to a Cast Member when we located him.  The hat let the Cast Member and kind parent know we had some special needs going on.

The hats of course got dirty, and we lost one of the letters I hadn’t ironed down enough.  When we got home I washed them in a sweater bag (the mesh kind that sometimes they hold nylons and other things too).  I figured if any more letters came off in the wash, they would end up in the bag.

See the clean, but damaged hat?

I then ironed the letters back on to the hat, and they look as good as new!

I’m happy this worked out so well.  I think we’ll be using these for a long time.

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Update July 2017  We’ve definitely used these hats a lot.  The painters cap was lost pretty quickly, but the baseball caps are distinctive enough we’ve been able to find them again when we’ve lost them.  They still help us get more smiles and patience.  The older kids (who are now teenagers) have been testing and pushing themselves and so they rarely have meltdowns in public anymore.  They have also pushed themselves to wait patiently in lines for about 45 minutes, so they don’t really use the hats.  That is huge progress for us.  Acroboy still uses the hats and it’s a good thing.  He is almost six years younger than Lawboy and it is reflected in his behavior.  While he is also pushing himself to do more, he is younger and has lower limits/thresholds than his older siblings.

Preparing Your Child with Aspergers to Face the World (Or at Least College)

Firstborn graduated last year.  He was accepted into a four of the five schools he applied to–all in different states.

He really wanted to go to one of two schools in particular and he made it his goal to get in.  Once he was accepted and made his decision,  we started preparing for his freshman year.  As I look at things, I realize that in reality, we really started to prepare when he was younger.

Laundry–When he turned eight, we taught him how to do his own laundry.  This has not always been a success.  On more than once occasion we had pink or grey “whites”.  He has been doing this for years, and I showed him how to run a top and front loader washer.  It’s taken lots of practice, and he still doesn’t wash his clothes quite as frequently as I’d like, but he does it.  Call it a victory.

Cooking–Through Scouting, our own efforts and his job at a food establishment, he has learned to cook and bake.  Like laundry, his baking endeavors were not always successful.  He once read 2 1/2 cups flour as TWO one-half cups of flour (ie-one cup).  That was an interesting gooey mess that soon adorned the trash can.  He learned to laugh at himself and has a fun story to tell.  In his senior year, I asked him to help with the food preparation more and more–whether it was browning meat or washing and chopping vegetables.  He can do it and I feel confident the boy will not starve.

Time Management–I’ve been coaching him on time management and organization for years.  This is the one area he has really, really struggled with.  It is more an extension of the struggles he has with executive functioning and planning ahead.  We’ve tried planners of different kinds, giant wall calendars for him to put all of his commitments on and the like.  I’ve often coached my children to look at deadlines for everything on a calendar.  Next, set up false deadlines for themselves a few days before the actual deadline.  Break the event up into smaller tasks, Calculate how much time they think they’ll need for each task and work their way backwards in terms of when they need to start the project/test studying.

I often use taking a trip for my example.  I try to really break down all of the variables so the children realize just how much time and preparation it can take.  On a trip, we know when the flight is, we know it takes x amount of time to get to the airport (say an hour).  It takes about a half an hour to park the car, catch a shuttle bus and get to the counter.  I will work like this:  Our flight leaves at 2pm.  We need an hour to get through security, that means 1pm.  We need an hour and a half to get to the airport, park the car and catch the shuttle.  Let’s give ourselves another 1/2 hour buffer in case we hit traffic.  That means we need to leave at 11am.  It generally takes us all 20 minutes to get the bags loaded, use the restroom before we leave and double-check we haven’t missed anything.  We’ll aim for a departure time of 10:30 (to make it easy to remember and to buffer our time).  We like to tidy the house before we leave, and depending on how on top of things we are, that can take an hour or more.  So, we need to have eaten breakfast, dressed, and packed by 9:30 at the latest.  Knowing how we like to sleep, this means we need bags packed before we go to bed, and we need to wake up by 8 or 8:30 (depending on the child).

Side note–We use detailed packing lists I created several years ago.  The older ones know most of what they need, so they use the packing lists more as a reminder.  We start the packing several days before we leave so the children all have time to wash and dry their laundry before it has to be packed into the suitcase.  

In the end, we sent Firstborn off to school with a portable planner he could keep with him at all times, a white board calendar, a file organizer, one five subject notebook (so he only had to keep track of the one notebook),  a meal plan (so he didn’t have to worry about cooking his freshman year), and lots of prayers.

Initially we got lots of text messages.  He was asking for advice on various things.  We often told him it was up to him to decide.  If he was really stuck, we used the approach of telling him, “other people in your place might….” followed by several suggestions.  We then pushed it back upon him to decide if any of the suggestions would work or if he would choose another course of action inspired by the “brainstorming” session.

One problem in particular I handed completely back to him.  I got a text one morning telling me he had overslept and missed breakfast in order to get to class on time.  Two days later I got the same message.  On the third day, he was convinced his alarm clock had broken and wanted me to tell him what to do.  Our conversation, “If your alarm clock is broken, what do you think you should do?”  In the end, he decided to move his alarm clock from his nightstand to his desk.  That solved the problem.  The act of getting up to shut off his clock woke him up enough that he wasn’t shutting it off in his sleep.  He solved this one himself–win!

We also counseled him on not overloading his schedule, and not tackling too many things at once as he adjusted.  Scheduling and executive functioning continued to be a sticking point.  Twice he took tests in the testing center in the late afternoon/evening because he thought he should have extra study time.  In the end, he realized a morning test time when his mind was fresh was better for him.  One of those late evening test times, he thought he knew what time the testing center closed, only to have miscalculated by an hour.  He ended up filling in random bubbles in the hopes he would get a few right and not get a worse score by not completing the test.

Despite our counsel to not sign up for too many classes if he was doing lots of extracurricular activities, Firstborn dived into both.  He pushed himself and got involved in the resident hall student government, played in the level 2 Symphony Orchestra (for non-music major students who are still serious about music), played in the pit orchestra for one of the school musicals, got involved in photography club, and performed lots of service hours in conjunction with one of his classes.  The second semester he took even more classes than first semester.  He came away with mostly B’s and two C’s for the year(one each semester).  He wasn’t happy about the C’s, but I’m counting it as a win in the end, because he realized it is often better to focus on fewer things and do them well, than do many things and not do them so well.

And I have to say it was quite refreshing when he would come home and lecture his siblings on how they were spending their time and the perils of procrastinating.  That’s when I really knew he had internalized the lessons learned.

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Firstborn would normally be working for the summer and preparing for his sophomore year of school.  Instead he is taking an academic deferment so he can serve a mission for our church.  That in itself has been a different process because of his diagnosis.  I will leave that for my next post.

Until then, I hope you are all well and happy.

 

 

 

Throwback Thursday–Prior Post 8/16/10–Catching Up After a Very Difficult Year Pt. 1

field.jpg

8/16/10

Wow. Been a while since I posted. I had a pretty hard year. A few months after my ectopic pregnancy I got pregnant again and was pretty excited. I was pretty sick, which I took to be good sign–baby must be growing right–right?

I was dealing with thyroid issues and went to an endocrinologist who diagnosed me with transient hyperthyroidism due to pregnancy.

My doctors wanted me to do an ultrasound at 7-8 weeks to make sure the baby was in the right place after they had seen an appropriate rise in hormone levels. I had one and we saw a heartbeat and it was great.

At 12 weeks I had another ultrasound–the screening one they do for chromosomal disorders. I had my blood work drawn too. Our sweet little baby was moving and kicking and had a nice heartbeat. The doctor told me though that the nuchal folds were a little thicker than normal and they might want to do some more tests–depending on how the blood work turned out. I asked how thick was normal. Answer: 4. How thick was our baby’s nuchal folds? Answer: 9.

It was not something I was expecting.

I went over to my friend’s house after my appointment to get my kids. She sat with me as I expressed my fears that the baby would be okay. I called my husband (DH) who was at the time out-of-the-country again. We talked briefly and decided try to not worry until we had the results of the tests.

Long story made shorter, after much prayer we felt at peace. When word came the following week that our baby had a 1 in 10 chance for trisomy 18 and a 1 in 16 for trisomy 21 (Down Syndrome) we were not surprised. It was a time of great emotion.

For those who don’t know trisomy 21 is most commonly referred to as Down Syndrome. The 21st chromosome has three copies instead of the regular two. Trisomy 18 is three versions of the 18th chromosome. There is even one called trisomy 13. The 13th chromosome has an extra copy there. Birth defects and congenital heart problems are not uncommon among with these. I understand a good number of children with Down Syndrome need heart surgery. Not all do, but a good number of them. With trisomy 18, most babies do not live more than one year because of the birth defects they usually suffer from. Trisomy 13 babies are usually delivered C-section and most don’t survive more than a day or two.

The doctors encouraged us to have either an amniocentesis or a CVS procedure. We prayed and talked and felt strongly that we should hold off on any more testing. We already loved our baby and no testing would change that. We did not want to do anything that might pose an additional risk to the baby.

On a brief trip out West, I found out my best friend had the same due date I did. We were both having a bit of a baby bump, so we went maternity shopping together and got some cute things. She was supportive of our decision, and a great strength to me. She herself was worried for her own baby, since she had been spotting.

(Her spotting stopped and she went on to deliver a beautiful baby girl and I couldn’t be happier for her and her husband).

At my 16 week check-up, the doctor talked to me about seeing a high-risk ob/gyn to determine what extra care if any I might need given my chances for something going on with the baby. When he went to listen to the fetal heartbeat, he had a difficult time locating it. He had me move to the ultrasound room. I had a foreboding feeling.

In the next room the tech was looking at the ultrasound, and I could see that there was no swish-swish of the heart beating. I asked, “There’s no heartbeat is there?” She shook her head no.

I lost it.

I utterly lost it.

I don’t think I’ve ever cried so hard in my entire life.

I had prepared myself for what I thought was the worst, that my baby would be born with trisomy 18 and I would only be able to have him or her for a year or so. I didn’t realize that the chances of my baby making it to term were slim as well.

Words really can’t explain how hard this experience was. I can say that my faith in God and in my Savior did make it easier. I believe that families can be eternal families, and I have had enough experiences in my life to know that I need to trust my Heavenly Father and his plan for me. And though my pain was great, the Savior knows exactly how I feel and more, because of what He did for me and all of us.

I received strength to go forward, and I am grateful for all I learned during this experience.

I’ll try to post more tomorrow about our year.

Do me a favor and go hug your loved ones.

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2017–I’ll be posting the next installment of this “Throwback Thursday” in two weeks.

Misunderstanding and Discriminatory Labels

misunderstanding

Our Boy Scout Troop recently returned from their annual weeklong campout.  Things did not go well.

Some background:

A couple of years ago Lawboy and a friend’s son who also has autism (we’ll call him Goodfriend) went to the backwoods program offered by our council.  They get along well and balance each other out.  Knowing they would be separate from the Troop, I talked to the leader in charge ahead of time about our boys and their needs.  We also provided contact numbers and emails so we could be reached as well as a lockbox with their medications.  The backwoods leader had worked with youth for a number of years and had exposure with ranges of autism.  There was one day Goodfriend got really frustrated and he was pacing in the woods breaking sticks.  The Leader called my friend to confirm how to proceed.  She told him to let Goodfriend work it out with what’s he was already doing, and he (Goodfriend) would rejoin the group when he was ready.  It was the only time she needed to be contacted.  Lawboy and Goodfriend had a really great experience and earned tons of merit badges.

Since that time, Goodfriend has gone on to earn his Eagle Scout award.  He did a conservation project and Lawboy is looking to do something similar.  I had the privilege on sitting in on Goodfriend’s Eagle Board.  His different way of thinking was evident, but in no way any hinderance.  He told us how he believed it was possible to be a leader even without being in an official leadership position.  You can lead through your actions and influence.  You can be kind and use good language.  The people who know and respect Goodfriend have cleaned up their language around him because he keeps up his standards.  He is kind.

This doesn’t mean he doesn’t get frustrated.  He does.  But Goodfriend is overwhelmingly positive and he generally gets along with everyone.  He has learned through the years to walk away from stressful situations and re-engage when he is calm.  He uses stress balls or will break sticks to work out his excess energy/frustration.  He’s a good kid (and a big kid who enjoys football) with a big heart.

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This account has been put together from my conversations with multiple people who were there, saw what happened, knew the people involved and their amount of training.

This year Goodfriend didn’t need to go to scout camp, but he really enjoys the outdoors and wanted to go back to the backwoods program again.

Unbeknownst to all of us the leadership had changed.

This new leader has little to none experience dealing with kids in the autism spectrum.

It was a very small group of boys, but that didn’t stop problems from occurring.  One of the boys there dared Goodfriend to pick up a hot coal–which he did.  No punishment was given out to that boy.  But because Goodfriend is big and loud and had an inability to completely express himself verbally when he is highly frustrated, he was misunderstood as being dangerous and a threat. Instead of contacting Goodfriend’s mother for any advice (despite the fact he was given every form of contact information possible for her), he opted to call the big whigs and label Goodfriend as a threat.  This could’ve been prevented if he had listened to Goodfriend before his frustration grew, if he had called or texted his mother for advice.  It could have been prevented if the leader had received autism training and had any idea of how to read the signs or what to do to head off a meltdown or been taught ideas on how to deal with a meltdown.

Goodfriend ended up being moved back to the regular camp, but the problems didn’t end there.  The camp counselors and leaders had all labeled Goodfriend as a potential threat and were watching him like a hawk and were all-over him for everything.  He was getting increasingly frustrated because he wasn’t being left alone to disengage, calm down and then re-engage.  He played a game and was tripped (accidentally).  He perceived it as intentional and tripped the kid in return.  (His wrong–we all acknowledge that).  He also yelled something in exasperation, but doesn’t recall actually yelling.  He was asked to leave the game.  He started to do so, but then was called back to talk to one of the counselors.  He complied.  (Even though he really wanted to just go back to camp).  The counselor talked at him and didn’t want to listen to anything Goodfriend wanted to say.  (The counselor did not see the initially tripping, only Goodfriend’s reaction to the tripping).  At one point he there was picked up a stick to break in frustration.  He was told to put down the stick–which he did.  He picked a rock to squeeze, and was told to put that down.  He did.  Then he picked up some blades of grass to shred and was told to put them down at which point he asked in frustration, “what do you think I’m going to do with a blade of grass?”

He was compliant to each counselor request.  His frustration was evident and misinterpreted as a bad and aggressive attitude.  Our troop leaders were called in.  They tried to talk to him for over half an hour.  Our Troop Leader can usually talk Goodfriend down, but had no luck.  Goodfriend expressed frustration no one would listen to him like our Troop leader, but eventually asked Troop Leader and Assistant Troop Leader to just leave him alone.  He took a nap and was fine by all accounts afterwards.

During Goodfriend’s nap, before he had calmed down, his mother was called.  She was understandably upset she hadn’t been called sooner before things had escalated your either the original backwoods leader or our Troop leaders.  She expressed she felt everyone, including troop leaders, were not interested in keeping Goodfriend there.  She decided to come get him.  There was additional miscommunication about the time of her arrival, and when she got there Goodfriend (who had completed his nap and woke up happy) was surprised to see his mother at camp.  He hadn’t been informed he was leaving.  (The Troop leaders tell me they thought they had a few more hours and didn’t want to upset him too early).

I’ve heard multiple sides of the story and I think our Troop and council can benefit from guidelines and training.  Guidelines which could be tailored to a specific boy could help keep communication open because a “one-size fits all” solution would not work.  Every child on the Autism Spectrum is unique with his or her own difficulties.  He or she will react differently to situations and stimuli.  Some children may need weight/compression/firm hugs, while in a different child, that would make the situation worse.  (It would make Whirlwind more upset to be hugged or restricted in any way).

I’ve been thinking of how we might improve things.  By no means have I come up with anything comprehensive, but possible questions to ask parents of special needs kids before camp:

When your child becomes frustrated, what is the best way to diffuse his frustration before it reaches critical status?

Do you prefer your child change locations (under two-deep leadership guidelines) to a quieter area (away from stimuli or other Scouters)?

Will the presence of other youth mitigate or exacerbate things? (I know one child who would escalate things to get a bigger reaction from everyone–he does better when there is no “audience”.  I know another child who worries about being embarrassed and if he feels embarrassed, it is even harder to get him to re-engage).

If your child reaches meltdown phase, what is the best immediate course of action?

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This is going to take time and work, but I really hope if we work with everyone, we can prepare them to handle situations better and to not be so quick to label an autistic youth as a troublemaker.

One can dream.