July 29, 2016

When a young man told me he was sorry my son has autism

I went to the grocery store this evening.  It was one of those trips without a shopping list, so I was walking up and down the aisles of Publix getting things I forgot the first time I went down that aisle.  I finally got everything I needed, and of course I picked the line with the coupon issues.  Brandon made a ton of noise and some of his quirky body movements as we waited our turn.  He was happy though, and that's all I can ask for in that situation.

As the cashier was ringing me out, the bagger asked Brandon if he would like a sticker.  Brandon isn't able to respond to something like that, so I helped him out.  I said, "He would love a sticker."  The bagger looked a little puzzled, so I explained that Brandon has autism, and he isn't able to speak well enough to tell you that we would like one.  I know he would love one though.  I then realized his puzzled look was actually that he was looking for the stickers.  He replied, "I'm sorry."  So I said brightly, "Oh, are you out of stickers?"  He said "No, they're right here."  My face fell as it hit me that he was saying he was sorry that my son has autism.

I could have gone off on him.  I wanted to.  I could have shamed him by saying, "I'm not sorry about my son.  Don't say you're sorry.  My son is fearfully and wonderfully made, and my son is nothing to apologize for."

But I didn't.

I just smiled and said thank you for the sticker.

He asked if I would like help out to my car, and I told him I would.  He then asked me if my son would be okay with him pushing the cart.  It was very thoughtful of him to consider that it might upset him.  I told him that he would be fine, and that I appreciated him considering that.  I started thinking I was kind of glad I didn't go off on him. 

Walking out to the car, this bagger told my son to steer him in the right direction of the car.  (We were in one of those kid's car carts.)  As he put everything in my trunk, I started buckling Brandon in his carseat.  Brandon was already in the car, and couldn't really see him anymore, but the young man called out, "Bye Brandon!" with a huge grin on his face and his hand waving in the air.

My head darted up in surprise, and I smiled at him as he walked the cart back into the store.  My eyes immediately welled up with tears at this awkward goodbye from this grocery store bagger who had just hurt my feelings minutes before.

Consider this.  If I had attacked this young man for his "I'm sorry" comment, it is clear that it would have crushed him.  He would have gone home tonight feeling awful, and would probably vow to himself to shy away from any other autism families he meets.  For nothing could feel worse than upsetting a mother like that, and he wouldn't want to get publicly shamed again.  Many special needs parents get their feelings hurt and are quick to blast someone for a thoughtless comment.  (And I am not talking about those cruel people who have deliberate unkind things to say.  Those people are a totally different story...I'll go off on those folks all day long.)  The other thing we do is not say something, and then lay awake half the night seething about the comment, and what we wish we had said.  

Before your child had autism, did you know the perfect thing to say to a special needs parent?  I'm sure you didn't.  To be perfectly honest, I still don't.  I have several friends who have children with special needs, and since children are so different (especially those with autism), I'm sure I have said the wrong things.  My closest friends and even my own family have hurt my feelings with comments they have made.  We need to have grace with people we come across so we can educate them as best we can in those fleeting moments.  This young man at Publix didn't know what to say.  He said the wrong thing, and it's very likely he had no idea that he had done so.  Giving him grace in that moment allowed me to see what a kind heart he had, and the effort he made to connect with this little boy he just met.





July 28, 2016

Am I Doing the Right Things?

Several months ago, James (my husband) and I went to an aggressive behavior workshop.  Brandon was becoming more and more aggressive.  He would bite, hit, and kick adults and himself.  He never became aggressive towards other children, which I am thankful for.  He would become frustrated, and take it out on himself, his parents, or teachers.  Sometimes he would meltdown for what seemed like no reason.  It's not like I can pinpoint the exact trigger for every single meltdown, but typically I can determine what likely set him off.  At this workshop, the psychologist brought up seizure activity - not in relation to our specific issues, but as a part of the workshop.  

It got me wondering...could theses seemingly sporadic meltdowns be something more?  I didn't think so, but as time went on I just kept thinking, "What if?"  What if there was seizure activity going on and we don't get it checked out.  What if we find out five years from now that he was having seizures that were delaying his development, and we didn't do anything about it.  That was enough to schedule the appointment for an EEG.

I think that is a fear for a lot of autism parents.  We are constantly wondering if we are doing the right thing by our child.  I know all parents wonder that.  But I'm talking about making decisions that can drastically impact his quality of life, especially considering that all the research shows that early intervention is key.

These are the kings of things that rattle around in my brain while I'm trying to fall asleep: 
He starts Kindergarten in one year.  Is public school good enough?  Well, I mean, of course it is...at least where he would go.  I teach in a public school, and it is wonderful.  Should I push for him to be in a general education classroom?  Should he have a one-on-one aid as part of his supplemental ads and services to get him in the least restrictive environment?  But what if pushing for him to be in a gen. ed. class is actually more restrictive for him?  What if an aid is more restrictive?  What if kids make fun of him?  What if he can't defend himself.  Okay, what about private school?  He would get a lot more one-on-one attention from his teacher.  Are there even any private schools around here that can accommodate a "not functional verbal" child with autism?  Is he even considered low functioning?  I mean, he is smart, but he still isn't talking...  Okay, there is a private school for special needs.  I'm still running into the same issues in my head...is he "high functioning" enough to go there?  It's fancy.  It's too far away to drive there every day.  We would definitely have to move.  Is this the best speech therapist for him?  The best occupational therapist?  The behavioral therapist?  I should have gone private with speech earlier.  Is it really the best thing for him to have his mom working full time?  Am I too hard on him?  Am I too easy on him?  Do I give him enough attention at home?  If I tried harder, maybe he would be progressing more.

I know I am a good mom, but I'm certainly not perfect.  It's just that right now we're sitting in this limbo, where we don't know what is going to happen.  Brandon will be five in a few weeks.  He has the chance to fall anywhere in this range from being non-verbal to becoming completely verbal.  We've been waiting for three years, wondering every single day how he will progress with his speech.  All we can do is sit here and wait, and trust in God's plan for us and for Brandon.

So, the EEG itself took about 30 minutes, and it came back normal.  We talked to the pediatric neurologist in depth before the EEG so he could understand what we were seeing with Brandon.  We have to keep an eye on these seemingly untriggered meltdowns, but we think, and the doctor agrees, that it's rooted in behavior.







July 26, 2016

Drab to Fab: Spray Painting an Old Filing Cabinet


I inherited this old, ugly, scratch, dented, written-on-in-sharpie, filing cabinet.  I am not really big on filing cabinets because I keep everything saved on my computer.  However, I have several word sorts, experiential learning items, and other reusable things I have made, and I need a place to store them!

1) Prepare the Cabinet
Wipe down the filing cabinet with a disinfecting wipe or wet paper towel to get all of the dust off.  There is no need to sand it.  Tape any parts of the cabinet with painters tape that you don't want paint to get on.  In my case it was the keyhole.  I always paint outside so I have the best ventilation possible, however, I do not recommend painting outside if it's cold.  The paint tends to shrivel up in really cold temperatures.

2)  Remove the Hardware
Take each drawer out and remove all the hardware.  On this cabinet, there is a panel on the back of each drawer face.  It easily popped off, revealing the bolts you need to remove to take off the hardware.  You will nee a socket wrench or adjustable wrench to get these bolts off.  Don't let this part freak you out.  As long as you have the right tools, it's very easy.  If you have let that part freak you out, take a picture of it, go to a hardware store, and ask an associate what you need to get it off.  To take off the label frame, just use a pair of pliers to bend the metal slightly (not too hard or you might break it) and slide it out.

3) Prime
You need to prime the cabinet.  You need to get a white paint and primer, found with all the other spray paint.  I did two coats on this filing cabinet so the blue paint would look even.  Don't forget to prime all parts of the filing cabinet that can be seen...including the edges between the drawers.  I typically buy my spray paint at Walmart.  The price is low and they have a huge selection.  I prefer to use the brand Krylon because it is less messy.  Other brands have a lot of excess spray that gets all over your hands, feet, and floor.

4) Paint!
After you let the primer dry for about 15 minutes between coats, you can start spraying with your color.  I did two full coats on this filing cabinet, allowing about an hour of drying time in between.  I touched it up a little after that second coat, so more like two-and-a-half coats.  I used a little less than three cans.  Allowing it to dry is important so you can see how evenly the paint is on there.

5) Allow for Dry Time
This is very important, and can feel like the hardest part!  You want to get your finished product all set up, but it's important to let the paint dry completely.  Any time I paint something, I like to let it sit for a couple days before I mess with it...especially before I set anything on top of it.  You should be safe to put the drawers in after a couple hours, though.

Other tips I've picked up along the way:
- Use a painter's mask to keep from breathing in paint
- Shake the cans very well before spraying
- Use a cardboard moving box to put under the cabinet.  It makes it easy to turn your cabinet around if you need a different angle of light or to spray with the wind rather than against it
- When opening a new can, spray the first spray out on the cardboard to make sure there is a good flow of paint
- I always start with a side that won't be seen.  For example, with this I started with the backside.  It takes me a minute to get into a good rhythm of spraying, so I like to start out with a side I don't care as much about.


I made some labels on Word to add some extra cuteness to my filing cabinet!



This is the color I used for this cabinet.  It's Krylon Blue Ocean Breeze.



These are my other favorite spray painting colors that I've used in my classroom. :)



July 5, 2016

Autism at Disney



We went to Disney!  This was my very first time!  We decided to go for just one day and go to Magic Kingdom.  By the end of the day, I couldn't imagine waking up the next day and doing it all over again.  It was mentally and physically exhausting...but so worth it!  We went to Magic Kingdom for the day, then headed to the beach for the rest of the week.  Going to Disney the first day rather than after the time at the beach was important.  Being off routine for that long is draining for anyone, but for someone with autism it can be devastating.

I have a pretty cool network of special needs moms.  I belong to a local Facebook group that I was able to reach out to for some tips for taking my autistic son to Disney.  There is also a Facebook group called  Tips for Special Needs at Disney full of useful tips from special needs families.

Before I begin with my own tips, here's Disney's official guide for Services for Guests with Cognitive Disability, including Autism Spectrum as well as the official information about the Disability Access Service Card.

https://disneyworld.disney.go.com/guest-services/cognitive-disabilities-services/

https://disneyparks.disney.go.com/blog/disney-parks-disability-access-service-card-fact-sheet/


Tickets, FastPass+, and DAS Card
We did not stay at a Disney Resort, so we did not have the Magic Bands.  I would love to do that next time though!  We purchased tickets online, which are like little credit cards or room keys.  You can purchase tickets in advance and have them mailed to you at no charge (as long as you order with enough time for the shipping).  Download the My Disney Experience app and assign a ticket to each member of your family.  You need this app! Plus it's free!  You can plan your whole trip by reserving your FastPass+ options, make dining reservations, look up wait times for rides, and more.  The My Disney Experience app will keep track of everything you signed up for.  I got confused a couple times and couldn't remember what we were doing and whether it was FastPass+ or DAS.  Thankfully, it was all right there!

You get three FastPass+ experiences for each ticket.  This comes at no extra cost, which I thought was pretty awesome!  You can choose these FastPass+ experiences in advance and you have to get to that ride within a one hour window that you signed up for.  This is different than the Disability Access Services (DAS) Card and they can be used simultaneously.  The DAS card will be tied to the persons ticket/card who has the disability.  Write names in sharpie on each card.  When you enter the park, make sure each person has their own ticket (you've already assigned them in the app) because they will take your finger print.  This is only really important if you want to re-enter the park later.  You need this ticket/card to ride each ride.  The ticket for the person with the disability is really important to have the name on because when enter a ride using the DAS pass/card you will have to swipe that card first.  They do that because the person with the disability has to be on the ride for you to use the pass (makes sense).  You don't want to be fumbling through all the cards to see which one works when there is a line of impatient people behind you!  To get the DAS pass/card you just go to Guest Services and they set it up for you on the card you already have.  You can't set up DAS before you get to the park.  The guy who helped us was extremely friendly.  We did not have to show a doctor's note or diagnosis paperwork.  He also set up our first DAS experience without us having to go to the ride itself.  Let me explain...

Okay, here is how the FastPass+ and the DAS pass can work together.  I signed up for the three FastPass+ Experiences for my whole family using that My Disney Experience App.  You can do this up to 30 days in advance.  There were nine of us total.  I did Splash Mountain, Pirates of the Caribbean, and the Haunted Mansion.  I spaced them out throughout the day.  When we got to the park the guy at Guest Services made my son with autism, Brandon's, card the DAS card.  He signed us up for the 7 Dwarfs Mine Train, at my request, and gave us the run down of how the card works.  The DAS Card essentially does this:  You go to a ride and tell the person at the gate that you have the Disability Access Service Card and that you need to sign up for the ride.  If the wait time is, say, currently 60 minutes, it essentially "holds your place in line" so that you can just come back in 60 minutes (or ANY time after 60 minutes so don't worry about dragging your kid up there to be on time if you're mid-meltdown) and do something else while you wait, versus standing in that line.  But don't forget that it just for DAS...if you're using the FastPass+ you have to be there in the one hour window.  Keep track of it in the My Disney Experience app.  You can eat, use the restroom, go hit up some shade, go do one of your FastPass+ rides you singed up for, etc.  When you come back, you just go straight to the FastPass+ line like you would with your regular FastPass+ experience.  Your DAS Card sign up CAN overlap with FastPass+  so be strategic.  Also, anyone in your party can sign you up for the DAS Pass experience.  You just have to have the person with he disability with you when you ride the ride.  For example, my Dad did not want to ride the 7 Dwarfs Mine Train with us (because it scared him...seriously...what a baby!) so he went and signed all nine of us up with his own card as soon as we entered the 7 Dwarfs Mine Train ride.  You cannot be signed up for two DAS experiences at the same time.  You cannot sign up for the next one until you have already used the one you are currently signed up for.  So my dad had to wait until my son's was scanned to go in before signing up for the other one.

You can click here for the information straight from Disney about the DAS Pass.  I thought I understood it all before going, but when I got there I realized I didn't.  It wasn't hard to figure out how to use both the FastPass+ and DAS pass together in the most effective way, but I hope that my "ramblings" above will help make it easier to understand before the actual trip. 

Another thing you can do to help with the waiting, is Rider Switch:
As per Disney's website, "If a child does not meet the height requirement or a Guest does not wish to board a particular attraction, no problem! With Rider Switch, one adult can wait with the non-rider (or riders) while the rest of the party enjoys the attraction. When the other adult returns, they can supervise the non-riding Guests, and the waiting adult can board the attraction without having to wait in the regular line again!"  
We did not utilize this, but I chatted with a lady in line about it.  She was using it because they had an infant with them, so it's not just for special needs situations.  You can read more about it here:
https://disneyworld.disney.go.com/guest-services/rider-switch/


Getting There
We went in late June.  This is a peak time to go, so the time we went was one of the busiest.  I have never been to Disney World, so I don't have anything to compare it to as far as how crowded it was.  I hope I can go during an off-peak season next time so I can see the difference.  We didn't get to Magic Kingdom until 10:00 a.m., even though it opens at 8:00 a.m. and there was very little waiting to get in.  I imagine that if you get there right when it opens there is a lot of waiting to get in.  We rode a little tram from the parking lot ($20 to park) up to Magic Kingdom, then rode a monorail to the entrance of the park. There was very little waiting for either of these.  As far as entering the park, there was literally no wait there either.  We just walked right in with our tickets.  Now, I had no idea about the finger printing thing, so I handed him all our tickets at once and it was pretty much a hot mess.  The guy was nice about it though.  I also got pulled for a random security check.  I had my sister hold my almost five-year-old autistic son's hand while I walked through.  He got a little nervous (and I should have anticipated that) but it didn't take long at all (I just walked through a metal detector), so thankfully I got back to him before he had time to get upset.  Also, they do check bags before you walk though.  I handed our bag to my husband and walked in with my son so he wouldn't have to wait.  On a side note...my Kavu bag was perfect for Disney and for keeping with me on all the rides!  I highly recommend one of those!  It was much easier to ride with than a backpack would have been because I could just twist it around to my side or front when we sat down.  As soon as you get there you should go to Guest Relations to set up your DAS card.

Strollers
You can rent strollers at Disney.  We got a double stroller for the day for $30.   There is a seatbelt on it.   It's plastic and it will get hot while it's sitting outside and you're on the rides.  If you park it in the shade, there is a good chance it will be moved by a Disney cast member who organizes the strollers and the stroller could end up in the sun.  There is also no shade provided by the stroller.  The cover that is supposed to provide shade is bent from people putting their stuff on it and provides zero shade.  (This is what one of the cast members told me when I was asking her about why it wasn't pulling out enough for shade.)  Thankfully my son was in the mood to wear his hat, which is not always the case.  We even went back to get a different stroller and they are all like that!  It is also hard to see your child while you are pushing the stroller because of this "shade cover."  Notice I used quotes on that.  I was paranoid that my son would unbuckle himself and run off, so that was a little stressful, but overall the stroller worked.

Next time we will likely bring our own stroller or rent one from outside the park.  When we left instead of taking a trolley back to the parking lot, we had to take a giant ferry boat.  It was the only option.  I asked.  We didn't have a stroller because we had to turn it in before leaving, so we had to make sure my son wasn't running around all over the place.  Thankfully he was too tired and hot to do any running around and he just sat there!

Safety: Identification Sticker
I made his sticker to put on my son's back any time we're at a busy place where there are a lot of people and he has the potential to get lost.  A lot of people notice it and read it when we're around in public, so maybe we're spreading a little awareness too!  Here is a link to it for free for you :)  It is editable, and you just print it on large address labels.  Take a few because it may get wet!  My son is not functionally verbal (essentially nonverbal) and cannot give someone our names or his own name, let alone phone number.  He probably wouldn't even know he was lost for quite some time!  ***PLEASE NOTE: You may want to consider removing the “my name is” part if your child might leave somewhere with a stranger that knows his/her name.



Items to Bring
These are the items I will be sure to have with me on our next trip:
  • Froggs Toggs Chilly Pads to keep us cool
  • Yeti or Swell bottle thermos to keep our water cold.  The water gets warm so quickly in that heat, and no offense to Disney, but the water tastes like there is dirt in it!
  • Wear tennis shoes, but take a spare pair of flip flops
  • Change of clothes for my son, who cannot stand wearing wet clothes
  • Hat for my son (silly me forgot, and we had to buy one)
  • Kavu backpack for our stuff
  • One of those fans that squirts out water
  • Snacks (I packed a lunch this time for my son because of his picky eating...don't risk hunger crankiness!)
  • Autism Identification Sticker (free on this link) for my son's back.  ***You may want to consider removing the “my name is” part if your child might leave somewhere with a stranger that knows his/her name.



Check out some of our photos, and please feel free to leave any other tips you have in the comments!











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