Elevators, light bulbs, dead ends, and other obsessions

A New Home!

Thank you to everyone who has been following this blog, and to those of you stopping by for the first time! However, the time has come for a new home- PlacesOnTheSpectrum.com

All of the posts from this blog have been moved over, and the site has been totally redesigned, so I hope you’ll like it! Please check it out!

 If you know me, you know that I’ve never really given a rat’s ass about politics.  I consider myself a Democrat, but a moderate one.  I often say to myself, “I really should read the paper and watch the news so that I can be a more informed voter,” but then I usually don’t read any more than the comics and the “Ask Amy” column.  That’s why it’s pretty incredible that last Thursday, I actually attended a U.S. Senate Subcommittee Hearing.  Willingly, and on purpose!  Of my own volition! 

One of the reasons I don’t follow what’s going on the political world is because I find it all so confusing.  As wonderful as “School House Rock” is, the “I’m Just a Bill” song doesn’t nearly cover all of the intricate steps that it takes to make a Bill become a Law.  But I’m going to try to explain here in my blog, to the best of my understanding, what is happening on an issue that is very close to home for me and my family. 

As I have mentioned in many past blog entries, I am a huge fan of Applied Behavioral Analysis (ABA) therapy as a treatment for people with autism.  In fact, it is the ONLY treatment we use for both of our children.  Unfortunately, ABA is extremely expensive.  You can read about just how expensive it is in my previous post called, “To the Senate Armed Services Subcommittee on Personnel.”  My husband and I feel truly fortunate that as an active duty member of the U.S. Air Force, I have medical insurance that covers this therapy.  Many families are not this lucky.  I have met plenty of parents who have sold their home, taken a second job, or put a second mortgage on their house to be able to pay for ABA therapy for their autistic child.  I’ve met many more parents who simply go without therapy, which just breaks my heart.  In the world in which my family lives, ABA therapy is just as essential to my children’s health as antibiotics for ear infections, X-rays for broken bones, and stitches for open wounds.  It seems that convincing health insurance companies of this truth is going to take some more work.

Every active duty member of the U.S. military receives health care from a company called Tricare.  But Tricare is not the program that covers ABA therapy.  That therapy is covered by a separate, supplemental program called ECHO, which stands for Extended Care Health Option.  Here is a definition of ECHO from Tricare’s website:

The Extended Care Health Option (ECHO) is a supplemental program to the basic TRICARE program.  ECHO provides financial assistance for an integrated set of services and supplies to eligible active duty family members (including family members of activated National Guard or Reserve members).  

There is no enrollment fee for ECHO, however family members must:

  • Have an ECHO-qualifying condition.
  • Enroll in the Exceptional Family Member Program (EFMP) as provided by the sponsor’s branch of service.
  • Register in ECHO through ECHO case managers in each TRICARE region.

What this basically means is that to enroll in ECHO and receive services, you don’t have to pay anything extra, but you do have to fill out a buttload of paperwork.  Which I have done – twice.

The big issue that led me to attend a Senate hearing is the simple fact that ECHO is currently NOT available to retired military members.  I hit 15 years of service in the Air Force on June 11, 2012, and am anxiously anticipating my retirement in 2017.  But the ABA therapy issue has given me many sleepless nights, especially after learning that I have not just one, but TWO children with autism.  How in the world am I going to afford ABA therapy for 2 children after I retire from the Air Force?

I was excited to recently learn that the train has already been set in motion for this to change, and I was happy to jump on board.  (Here is the part where I try to explain everything that I understand about politics, but will probably not get it all right.)  Congress is currently debating many parts of the National Defense Authorization Act for Fiscal Year 2013, which is essentially the U.S. Military’s budget for next year.  An amendment to this law has been proposed that would extend the ECHO benefits (and therefore ABA therapy) to retired military members and also to Federal Employees.

Why now?  Because On May 30, 2012, a federal agency called the U.S. Office of Personnel Management (OPM) released this statement:

“The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB (Federal Employees Health Benefits) Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

This quote came from an article on Autism Speaks’ website.  If you want to read more, click here.

The significance of this statement is huge.  Before, ABA therapy was labeled by the federal government as “educational.”  This means that medical insurance companies were not required to pay for it, because school systems were expected to provide it.  This, sadly, rarely happens.  But now that the OPM has changed the designation of ABA therapy from “educational” to “medical,” this puts pressure on medical insurance companies to cover it. 

On June 14, 2012, I received an email from Scott Campbell.  Scott is an Army Colonel in the Washington, D.C. area, and the father of an autistic child.  He is extremely active in the autism community, is very knowledgeable about autism issues in the military, and speaks at autism conferences regularly.  Here is an excerpt from his email:

The Senate Armed Services Subcommittee on Personnel will be holding a hearing on the issues impacting our military families affected by disabilities.  It is next Wednesday, the 20th of June at 1430 in Room 232-A of the Russell Senate Office Building at Constitution Avenue and C Street in Washington, DC.  Jeremy Hilton suspects that a large portion of the testimony and discussion will be referencing a potential amendment from Senator Gillibrand regarding ABA and the recent OPM decision to include ABA as a medically necessary therapy for the dependents of federal employees.  He intends to address that issue in his written testimony, along with other issues relevant to our community including special education, TRICARE, Medicaid waivers, and the EFMP programs.  In addition, he is soliciting military family stories on one page (I know, not a lot of space) in either a word, jpg or pdf document by NLT than this Sunday night, since he has to submit them on Monday.  

If you are in the DC area, we would encourage you to come to the hearing as it will open to the public.  For those on active duty, you should NOT wear your uniform.  It’s liable to be packed so get there early if you are interested.  Thanks very much and we hope to see you there!

As soon as I read this, I knew that I had to write a letter.  Partly because this issue is extremely important to me and to the future finances of my family, and partly because writing about autism is, obviously, something that I enjoy.  So I wrote a letter and posted it here.

After I sent the letter on Sunday evening, I thought the issue was finished, and I went to bed.  But the next day, I started to think about it some more.  I thought about how the hearing is open to the public.  Should I go?  How completely crazy!  Mindy in politics!?!?!  Wouldn’t a Senate Subcommittee Hearing be incredibly boring?  There was nothing going on at work that I couldn’t miss on Wednesday afternoon, and since I couldn’t stop thinking about it, I decided to go. 

So I got all dressed up on Wednesday, and boarded the Metro for downtown Washington, D.C.  I was getting really excited!  I had never done anything like this before.  Since I live in the suburbs, it took me almost 2 hours to get from my house to the door of the room where the hearing was to take place.  And on the door was a big sign that read “CANCELLED.”  I was so disappointed!  The hearing had been rescheduled for the next day.  On my Metro ride home, I tried to decide if I was going to make this trip again on Thursday afternoon.  I had an Air Force Band concert on Thursday evening, which would make the logistics of attending the hearing tricky.  But I decided that it was important, and I had been looking forward to it, and so dammit, I was going to go!

On Thursday I put the same outfit back on (because I look cute in that skirt!) and got on the Metro again.  And I’m so glad that I did!  I never would have guessed in a million years that I would find a Senate Subcommittee Hearing fascinating, but I did.  I don’t think my mind wandered for the entire 90 minutes.  (I certainly can’t say that when I’m at a band concert, either in the audience OR performing!)  There were four Senators in attendance, and six witnesses on a panel who were invited to speak at the hearing.  The Senators who attended the hearing were Committee Chairman Jim Webb (D-VA), Mark Begich (D-AK), Richard Blumenthal (D-CT), and Kristen Gillibrand (D-NY.)  It is interesting to note that no Republicans were in attendance.

I’ll list the six panel members here as well, and will apologize in advance that they all seem to have extremely long titles: Dr. Karen S. Guice, Principal Deputy Assistant Secretary of Defense for Health Affairs and Principal Deputy Director, TRICARE Management Activity, Dr. Rebecca Posante, Deputy Director, Office of Community Support for Military Families with Special Needs, Department of Defense, Dr. Vera Tait, Associate Executive Director, Department of Community and Specialty Pediatrics, American Academy of Pediatrics, Dr. Geraldine Dawson, Chief Science Officer, Autism Speaks, and Professor of Psychiatry, University of North Carolina at Chapel Hill, Mr. John O’Brien, Director of Healthcare and Insurance, U.S. Office of Personnel Management, and Mr. Jeremy L. Hilton, Military Spouse, Veteran, and Military Family Advocate.

Jeremy Hilton, who is mentioned earlier in the email I received from Scott, is the person who called for military families to write letters for him to present at this hearing.  And he was also the only person on the panel representing parents of special needs children.  He recently won the “Military Spouse of the Year” award sponsored by Armed Forces Insurance.  I believe that this distinction is what got him invited to be a part of this panel, and I think he did an awesome job of representing military families of children with special needs.

I didn’t know what to expect at this hearing.  I wondered if there would be a lot of arguing and debate, and I’m surprised to report that there wasn’t.  Out of the ten people involved in the hearing, (four Senators and six witnesses) nine seemed to be completely in favor of the proposed changes.  The representative from Tricare was the only person still clinging to the label of ABA being “educational” rather than “medical.”  And a good portion of the hearing was members of the panel explaining this distinction to the Senators.  In the argument that ABA therapy is medical, Drs. Tait and Dawson cited several justifications.  The first was that some autistic children tend to elope (run away spontaneously) and can easily get in accidents causing injury or death if the issue is not addressed.  Also, some autistic children have feeding issues that can cause them to be malnourished if not addressed.  And lastly, there is scientific evidence that ABA therapy can actually change pathways in the brain, and can change the way the brain looks in a scan after time.  In my opinion, that last point is the most convincing of all.

Since the OPM’s statement was published so recently, Senator Gillibrand asked Dr. Guice (the Tricare representative) how long it would take for her organization to review their policy and determine if Tricare needed to make a change.  After hemming and hawing for a little bit, Dr. Guice replied that it would take at least 6 months.  Senator Gillibrand then replied, “Well, I think that is just too long!”  Senator Gillibrand is my new hero!

Ok, I have to confess that I did daydream about how it would have been really cool if Mr. Hilton had read my letter at the hearing.  But he didn’t.  He only read one letter, and it was written by a Marine who had been wounded in combat and was medically retired when he returned home.  This Marine has a child with autism, and is unable to access any services for his child because of his retired status.  It was a good letter, a convincing letter, and (I must admit) the best choice for the hearing. 

Since this was my first step into the world of politics, I’m really not sure what happens next.  Although I didn’t do or say anything during the hearing, I was excited to be there.  And I wrote a letter that was submitted to the Subcommittee, along with over 80 other letters written by military families with special needs children.  It feels really good to know that I did something, even if it was small.  I left the hearing feeling very positive about the possibility of change, yet I know that there are many more steps this amendment has to go through.  And I’m also aware that only 4 of 15 Senators on the Senate Armed Services Subcommittee on Personnel were in attendance.  But I’m thrilled that this matter is being discussed, and I hope I can help in some way in the future to make this change happen.  What do you know?  I DO care about politics!

I received an email a few days ago requesting 1-page letters from military families who have children with autism to be read at a Senate Subcommitte hearing this Wednesday.  The hearing is to push for ABA Therapy to be covered by insurance for not just active duty members as it is now, but also for all Federal Employees and for retired service members as well.  This request hit home because 1. I’m looking to retire in 5 years and am not sure how I will pay for ABA for 2 children and 2. Writing about autism has become a new hobby of mine, and I think I’m pretty good at it! So I decided to write a letter.  And then I decided to post it here.  Thanks for reading.

To the Senate Armed Services Subcommittee on Personnel:

My name is MSgt Melinda Burts, and I have been an active duty member of the United States Air Force for 15 years.  My oldest son, SB, was diagnosed with autism at 20 months old in 2006.  My husband and I were devastated.  He was completely non-verbal and behaviorally was nearly impossible to control.  I cannot express how thankful my husband and I are that SB was able to receive ABA Therapy beginning at age 2, and that this therapy was covered under my Tricare insurance.  Although the road has been frustrating and challenging at times, SB’s progress has been truly astounding.  He has been receiving ABA Therapy now for over 5 years.  He just completed first grade in a mainstream classroom.  He still has plenty of academic and behavioral issues to work on, but he was able to handle the kindergarten and first grade academic curriculum with some special education support.  He was even identified by the Advanced Academics Teacher for being gifted in math, and received weekly group instruction in advanced math concepts.  He is a success story (yet still a work in progress) and I truly believe he would not have made these strides without years of intensive ABA Therapy.

My husband and I watched our younger son, AB, very closely for signs of autism throughout his infant and toddler years.  His language, cognitive, and social skills seemed to be on track for a while.  But at age 4, we started to notice delays in some of these areas and also a few familiar autism behaviors.  AB was diagnosed with autism in November of 2011 at age 4.  His condition is milder than his older brother’s, but he has issues that definitely need to be addressed.  Again, my husband and I are relieved that we have access to ABA Therapy that is covered by Tricare, and AB has already made progress in many areas in the few months he has been receiving therapy.

I cannot imagine how my family could have survived financially if I had been paying for this therapy without the help of insurance.  The going rate for a BCBA (Board Certified Behavior Analyst) is $150 per hour, and the going rate for an ABA Tutor is $50 per hour.  If I add up the services that my children currently receive in a typical month, at these rates it comes to $3800 for SB and $2400 for AB, for a total of $6200 per month.  But because each child with autism is different, the services that each child needs can vary.  Also, the services that a child needs can vary at different times in his life.  For example, SB was having some behavioral difficulties at school this year, and our BCBA spent a lot of time at his school working with his teachers to create a behavior plan for him.  It was extremely successful and all of his teachers agree that his behaviors improved drastically after the plan was put in place.  But this required our BCBA to spend as much as 15 hours a week at his school for several weeks.  This comes to an extra $2250 per week (or an extra $9000 per month) for a temporary period of time.  I am an enlisted member of the U.S. military and my husband is a public school teacher.  There is just no way that our family would have been able to afford this level of ABA services without help.

I strongly believe that all medical insurance plans should cover ABA Therapy.  I have seen with my own eyes how incredibly beneficial ABA Therapy is for all children with autism, both the mildly impaired children and the severely impaired children, and all of those in between.  And as I approach 20 years of service in the military, I must admit that I am nervous about how I will pay for ABA Therapy for 2 children after I retire.  I cannot impress enough how important I believe it is for ABA Therapy to be covered for Active Duty Members, Federal Employees, and Retired Military Members alike.  Please consider taking the action necessary to make this happen for your service members.

Sincerely,

Melinda M. Burts

It was the evening of November 13, 2006, only 5 days after SB’s devastating autism diagnosis.  I placed him in the bathtub for his bath, just like I did every night.  He had never complained about baths before.  In fact, he usually seemed to enjoy them, and liked to spend a little time splashing around in the tub after being washed.  On this night, however, he began screaming as soon as I sat him in the tub.  He immediately stood up, and screamed and cried as though in terror.  I checked the water temperature, which seemed fine.  What on earth was going on?  At 20 months old, he had no words to tell me what was wrong.  Even more frustrating, he had very little receptive language, which means that he really didn’t understand what other people were saying to him.  My attempts to soothe him were pointless.   “Don’t cry.  It’s ok.  It’s just a bath.  See?  It doesn’t hurt.  It’s just water.  There, there.  It’s ok.”  He just stood there, screaming as though in pain.  Finally, I used a washcloth to splash him off a little bit, and quickly took him out and dried him off.  I guess he didn’t really need a bath that badly, anyway. 

The same thing happened for the next 9 days.  Ok, I may have skipped the bath a few nights in there, not wanting to deal with the screaming and crying.  But after a while, I couldn’t keep skipping his bath over and over, because he was starting to get stinky.  I realized that I had to deal with this problem, because it wasn’t going away on its own.  My husband and I were baffled, and I was distraught.  I had just learned that my child had autism, and I was already overwhelmed by all of the things he needed to work on.  Now, all of the sudden, here was a new one to add to the list.  Where did he get this fear of baths?

The first thing I did was to ask the pediatrician what to do.  Her suggestion was to tell him 15-20 minutes in advance that he was going to take a bath soon, and then talk about what I was doing during every step of the bath in a calm, soothing voice.  I wrinkled my brow looked at her like she was nuts.  Did she forget that he was just diagnosed with autism?!?!?  “HE DOESN’T UNDERSTAND ANYTHING I SAY TO HIM!” I rudely replied.  “Oh,” was all she said after that.  You start to feel pretty hopeless when you realize that you have stumped your doctor.  If we had a problem like this now, the first person I would go to would be our ABA therapist.  But since this happened in the first 2 weeks after his diagnosis, we hadn’t started ABA yet.

So where did I go next on my quest for help with this problem?  Google, of course!  I learned from searching the internet is that this is actually a common problem among toddlers in general, not just children with autism.  This was comforting for me to read.  In fact, for the last 5 years I have wrestled with this question every time I see an unwanted behavior in either of my children, which is almost daily: Is that an autism behavior, or just a normal child thing?  Most of the time, it’s impossible to know for sure.  For some reason, learning that it was a normal child thing made me feel a little bit better.  There were a lot of articles on the internet about how to help your child get over a fear of baths.  And many of these articles also contained comments from parents who listed strategies that they had used successfully.  But since most of these parents did not have children with autism, many of the suggestions seemed somewhat irrelevant and useless to me. 

The first piece of advice that I read on several different websites was to never drain the tub while your child is in it, because some kids develop a fear that they will get sucked down the drain.  I had never drained the tub while SB was still in it, and so I was pretty sure that this was not the issue.  There were also lots of stories of children who had pooped in the tub, and then became scared to get into the bath after that.  Again, I knew that this was not the issue I was dealing with.  Another suggestion was to get into the bath with your child.  I tried this, but it didn’t help at all.  It actually made him even more upset.  I’m not sure why, but I’m guessing that since I had never done it before, it was confusing to him.  I also read that it might help to buy him a new bath toy to get excited about, but if you have read my post “I’m not an ABA Therapist…but I play one on TV,” you will remember that SB didn’t really play with toys yet.  He had no toys that he liked or connected with, so I knew that this suggestion was also no help. 

Then I finally read a piece of advice that I thought might be relevant: bubbles.  SB loved to watch us blow bubbles.  Here was something I could work with!

So on the first night of “Operation Calm Bath,” Charlie and I got to work setting up our bathroom in advance.  We filled the tub with warm water and lots of bubble bath.  To double the bubble fun, I also brought a bottle of bubbles for me to blow.  I put a CD player in the bathroom to play his favorite CD at the time, which was the Fisher Price Little People “Sing-a-Long Favorites.”  We turned the lights down to add to the calming ambience.  Then we went to get our little boy.

Charlie put SB in the tub, and let him stand instead of sit.  Of course, he screamed bloody murder, like always.  But then I started blowing bubbles, and he got distracted.  I blew bubbles, I sang, I reached in and splashed around in the bubble bath.  His crying was intermittent while Charlie washed him off with the washcloth as quickly as possible.  I would say he cried for about 60-75% of the bath, which, sadly, was a huge improvement over the 100% of the previous 9 days.  We called it a success.

We did the same thing the next night.  And it got a little bit better.  He cried for less than half of the time he was in the bath that night.  And the most important milestone on this second night was that in the moment Charlie finished washing him off, he wasn’t crying.  So we were able to take him out of the tub happy, and praise him for doing a good job.  Each night he seemed to get a little more comfortable, and cry a little bit less.  On the fifth day, we were actually able to coax him to sit down in the tub without a lot of crying.  After 2 weeks of “Operation Calm Bath,” he finally seemed to forget his fear and enjoy bathtime again.

The only thing that my husband and I could come up with as a possible reason for the sudden fear of baths was that SB had a bit of a diaper rash on that first night he got upset in the tub.  It’s possible that when he sat down in the water, it stung a little bit.  And since he was not very rational at the time, (actually, he’s STILL not very rational, and there may be a post about that someday soon!) maybe he was afraid that sitting in the water would hurt again every night, even after the rash cleared up, because he didn’t connect that the rash was the reason for the pain.  He just knew that one time, the bath caused him pain, so he was afraid to get in it again.  We’ll never know for sure, because he didn’t have the language to tell us at the time, and he doesn’t remember the incident now.

In retrospect, I think that the most important lesson I learned here is to NOT PANIC when a new behavioral issue arises.  When SB started having these bath terrors, he was newly diagnosed with autism, I was pregnant, and life just seemed so damn overwhelming that I didn’t think I could handle one more thing.  So when this one more thing did occur, I felt so depressed and full of despair.  I thought things like, “How will we ever get past this?  Will he always act like this when I try to bathe him?  How are we going to find the time to work on ALL of his issues?”  Looking back on all that we’ve learned in the past 5 years, I now know that when a new behavior occurs that needs to be addressed, it’s important not to panic.  I’ve learned to:  1. Take a deep breath.  2. Consult my ABA therapist, doctor, the internet, other parents, etc. until I find a strategy (or several) to try.  Be patient, and keep trying.  Something will work.  3. Remind myself that it will NOT always be like this.  Some behaviors can be fixed or controlled in a few weeks, like this one.  Others may take years, like SB’s weird rocking habit in bed.  (That is another interesting post for the future.)  No, I don’t have time to work on ALL of his issues.  Not at once.  But I CAN work on one thing at a time.

In late 2008, when SB was 3, he became very good at jigsaw puzzles.  He wanted to do them all the time.  My husband and I were thrilled!  No, we were BEYOND thrilled!  For years, he had spent most of his free time stimming.  Now he wanted to do puzzles every day.  Hooray!  He actually WANTED to do something normal!  Since he didn’t enjoy very many normal activities at this age, I encouraged puzzles with gusto, and bought him dozens of 24-piece puzzles.  About 2 months later, his enthusiasm for puzzles faded, and he didn’t want to do them anymore.  He gradually slipped back into some of his favorite stims more frequently.  I was incredibly disappointed.  I tried new puzzles, harder puzzles, and even easier puzzles, but with no luck.  The activity was definitely fading.

About a year later, I started to teach SB how to play Candy Land.   I used the Activity Time procedure that I outlined in a previous post called, “I’m not an ABA therapist…but I play one on TV.”  Learning how to play a board game was really hard for him, because at first, he just did not understand how to move the man along the path.  I had to start with the most basic of steps and simplify Candy Land as much as possible.  I began by ONLY using the cards with one color square.  I removed from the game all of the cards with two color squares AND all of the cards with candy items on them.  If you normally think Candy Land is boring, try playing it THIS way!  Ugh!!!!  It took a while, but he finally began to understand the concept of how to move the man along the path, so I added the other cards back in.  Once we were using all of the Candy Land cards and playing a game successfully, I moved on to Chutes and Ladders.  Since the “move the man along the path” concept was the same, and he has always loved numbers, he caught on to this game much more easily.  Hi-Ho Cherry-O was next.  By the spring of 2010, he wanted to play board games all of the time.  Again, we were thrilled!  Not only was he filling his free time with a normal activity, but he was doing it WITH another person!  Here was the first activity that he enjoyed that he could actually do with another child.  Maybe we could finally have play dates!  But again, the excitement of board games faded after a few months, and he stopped wanting to play them. 

I finally realized how to keep these things, and other things, in SB’s rotation all of the time.  I had to actually schedule them into his day using his picture schedule.  Back when he was 3, I had built him a picture schedule that hung on the wall in our kitchen.  The original reason I created it was that he did not seem to understand the difference between a weekday and a weekend.  Some Saturdays he would cry when I told him he was not going to preschool.  Sometimes on weekdays he would cry when I told him he WAS going to preschool.  He certainly did not understand the words “yesterday,” “today,” or “tomorrow.”  Every morning started with a frustrating tantrum of some sort, because the day never seemed to hold what he thought it was going to.  Since he couldn’t read yet, his schedule could not contain words, so it had to be made entirely of pictures.  I used “PECS,” which stands for Picture Exchange Communication System.  This communication system was developed for children who are nonverbal or with limited verbal skills, and is used in special education classrooms all over the country.  I found hundreds of picture cards that were easy to print for free at do2learn.com.  I also used photographs of people he was going to see, like his daycare provider or therapist.  And sometimes, if I couldn’t find the right picture card to use, I drew one of my own.  Thankfully, he was not critical of my lousy drawing skills!  A typical day for him looked like this:

When I first introduced the picture schedule, it contained only one day at a time, because that’s all the information he could handle.  We talked through it each morning and each evening.  When I finally felt that he understood what all the pictures meant, I put up 3 days at a time, like this:

Every morning and every evening we looked at the schedule together and discussed yesterday, today, and tomorrow.  After several months, when I finally felt like he understood all of that, I began to put up a whole week at a time.  That looked like this:

By 2009, SB was a pro at following his picture schedule.  He understood the days of the week, he understood yesterday, today, and tomorrow, and he also understood when something unusual or different was going to happen in his week.  This gave him the opportunity to look forward to future events, such as birthday parties or visits with relatives.  Before he began using this picture schedule, there was no way he was able to understand something like, “Grammy and Grandpa are coming to visit on Saturday!”  The schedule also helped me to prepare him for things that he was not going to like at all, such as doctor appointments.  SB had SEVERE anxiety about going to the doctor, and I always dreaded taking him because I knew the day would be full of crying, fits, and frustration.  (Doctor anxiety is a post for another day.)  When he knew about a doctor visit several days in advance, it seemed to ease his anxiety a little bit, at least until we got there and the nurses began touching him.  He checked his picture schedule every day, and seemed to love knowing what was coming up in his week.  Don’t we all like to know what to expect in our week?

But back to the point of this essay.  One day sometime in 2010, I thought about how sad I was that SB had stopped playing board games.  I couldn’t seem to interest him in any games, not even the full-of-numbers Chutes and Ladders that had been his favorite thing to do for months.  Any suggestion by me to play a board game was met with screaming and defiance.  Then I had an idea – would he play a board game with me if his picture schedule told him to?  After “School,” “Home,” and “Dinner,” if the schedule said to play a game, would he do it, simply because it was on the schedule?  I decided to find out.  I drew a picture card with a game spinner on it, and called it “Family Game Night.”  I placed the card on Thursday after “Dinner.”  I didn’t ask him if he wanted to play a game, I just matter-of-factly told him that it was Family Game Night, and that we were all going to play a game together.  Then I instructed him to go choose a game, expecting a full-out tantrum.  He ran into the living room, went straight to the shelves where we keep the games, and returned with the Chutes and Ladders box. 

SCORE!  It worked!  I wish I could remember who won the game that night, but I don’t.

Every Thursday became Family Game Night.  Soon after that, every Friday night became “Puzzle Night.”  I drew a picture of a puzzle piece on a blank card and put it on the schedule.  Even though the card looks ridiculous because I can’t draw at all, he actually began doing jigsaw puzzles again, if only once a week.  I was proud of my idea and how it was working to keep these positive activities in my son’s rotation even after he seemed to get bored of them.  My mind started to form more evil plans.  What else could I get SB to do?

Both of my boys HATE art projects.  Crayons, markers, glue, scissors, stickers, glitter, paint, etc, etc, etc.  They despise it all.  Being somewhat of a girly girl, I find this very disappointing.  I like art projects!  I remember coloring for hours with my mom when I was a little girl, and cutting out magazine pictures and gluing them to paper.  But, alas, coloring and cutting with my children was just not meant to be.  Or was it?  One day I placed an “Art” card on the schedule on Saturday morning.  SB noticed it on Monday, and I could tell he was suspicious.  He just stared at the card for several minutes.  “Saturday we are going to do art,” I told him.  “What art?” he asked.  “We are going to finger paint,” I said.  “How many minutes?” he asked.  I told him ten minutes.  He gave me a dirty look that said, “I don’t trust you,” but didn’t ask any more questions about it. 

By the time Saturday morning rolled around, SB was ready and willing to do an art project.  I couldn’t believe it!  Giving him several days to think about it and prepare for it really worked!  At this point, AB was so little that he wanted to do whatever his big brother was doing, so it wasn’t hard to convince him to participate, too.  Both boys sat at the table, wearing some of my old college marching band T-shirts as paint smocks.  (I think at least one of the T-shirts had some profanity on it.  Don’t judge me.)  I gave them big pieces of paper and squirted a blob of paint onto the paper.  AB dug right in and got himself good and messy in the blink of an eye.  SB was more tentative, using just one finger at first, not wanting to get dirty.  But with a little encouragement, he soon had paint all over the paper.  “Was that 10 minutes?” he asked.  I hadn’t even been watching the clock, but I figured it was close enough.  I let him get down and wash his hands.  It may have only been 10 minutes (or even less) but he had done an art project with me without a fight or a tantrum.  That was a success in my book.

So the Burts family plays a board game (or now sometimes a Wii game) every Thursday, does jigsaw puzzles every Friday, and does an art project every Saturday morning.  (Well, every Saturday that I have planned something and get up in time to get it ready.)  Maybe we’re not as spontaneous as other families, but having family traditions is kind of nice.  And occasionally, when we’re feeling a little crazy here at the Burts house, we just might play Chutes and Ladders when it’s NOT Thursday!

SB’s strengths

I have been in kind of a funk lately.  I don’t know exactly why.  Work, kids, autism (duh!), the weather, a sore throat, the alignment of the planets…who knows?  To make myself feel better, I decided to write a post about all of SB’s strengths.  He has a lot of strengths, and sometimes it’s really easy to forget about them.  We spend an awful lot of our days focusing on the things that he needs to improve.  There are so many behavioral issues, language issues, social issues, and OH MY GOD the toileting issues!  Some days it seems like all I do is correct him, scold him, make him do his homework, and then make him erase it and do it again.  So here are the things that my little autistic first grader has going for him:

1. A sense of direction far better than his mother

If you know me, you know that I have a terrible sense of direction.  It’s laughable, actually, how easily I can get lost while driving on a road, walking inside a building, and even coming back from the bathroom in a restaurant.  It’s a part of my brain that just doesn’t function properly.  Sometimes I wonder if I have my own learning disability in this area.  Anyway, I have learned to compensate for it by using a GPS, studying maps before I go somewhere new, making mental notes of which way to turn by using landmarks (when you exit the bathroom, turn TOWARDS the framed picture of the bear), and sometimes, just learning to laugh at myself and say, “Oops!  Wrong way!” 

My oldest child started displaying a sense of direction before he could even use sentences.  One afternoon when he was 3, we were driving to his ABA therapy session at an office in Falls Church, Virginia.  I was on the I-495 beltway and needed to exit on US-29.  We were speeding along just fine when suddenly, SB started to cry.  “See Lee!  See Lee!” he screamed.  Lee was his therapist.  Of course we were going to see her, and I had told him that.  What on earth was he crying about?  Then I realized that, as usual, my mind had been wandering, and I had completely driven past the exit that I needed to take.  I was really shocked at SB’s quick reaction.  With such limited language at this point in his life, we really didn’t know how much he understood.  This was one of the early indicators that he did, indeed, understand what was happening around him.

Today, at age 7, he still surprises me with his sense of direction.  Every day in the van he tells me which way we are going to turn to get wherever we are going at almost every intersection.  (No, that never gets annoying AT ALL!)  Just a few weeks ago, I took him and his younger brother to a Saturday morning event called “Touch-a-Truck” at the Fairfax County Government Center.  The parking lot was full of construction trucks, fire trucks, garbage trucks, and other big trucks that kids were encouraged to climb all over.   Super cool fun for hyper little boys!  The area around the government center, however, is under construction and completely confusing.  As we were leaving, I decided that I didn’t trust my instincts (which I know to be terrible) to help me reverse what I had done we when had arrived, so I turned on the GPS and decided to trust whatever it said.  (Sometimes I find this terrifying.)  The GPS directions dumped me onto the parkway and right away I found myself sitting at a red light behind a LONG line of cars.  SB started to cry and whine, “But I don’t wanna go back to Touch-a-Truck!  I wanna go home!!!!!”  “We ARE going home!” I assured him, feeling confused by this outbreak.  “No!” he screamed.  “We’re going back to Touch-a-Truck!”  As the light turned green and I started to move forward, my GPS said, “Make a U-turn at the light.”  Oh.  I guess we WERE headed the wrong way.  SB knew it first.  My GPS knew it second.  And me?  Well, I’m always the last to know.

2. A memory so good it’s eerie

SB loves to talk about dates, and REALLY loves to talk about birthdays.  When he meets someone new, he usually wants to know their birthday.  Everybody has one, and most people don’t mind sharing it.  (Some people don’t care to share the year they were born, but that’s ok.)  I can’t tell you how many times the first thing he has said to me in the morning is something like, “Hey Mommy!  It’s Ms. Smith’s birthday today!”  Since he has always been an early riser, this usually happens somewhere between 5:30-6:00 am.  Since I am NOT a morning person, I usually can’t even remember my own name at that hour, let alone who might be having a birthday.  Honestly, I’m often not sure who he is talking about.  It could be a teacher from school, it could be someone from our church, or it could be someone he met once that I don’t even know.  But he loves to remember other people’s birthdays.  Sometimes, if I DO know the birthday boy or girl, he asks me to call them on the phone so that he can play “Happy Birthday” for them on the piano, which is pretty darn sweet.  In addition to birthdays, he also likes to memorize the dates when he or his brother went to the dentist, when our family went on any sort of trip, and when I fixed foods for dinner that he really hated.

If SB already knows your birthday, the next piece of information he likes to learn about you and memorize is your house number.  Not your full address – he doesn’t care about what street you live on.  He just wants to know the number on your house.  This is useful when we are going to someone’s house that we haven’t been to in a while.  “We’re going to Billy’s house today.  What was his house number again?”  “3754.”  “Got it!  Thanks.”

Another cool trick is that when SB is with me, I don’t ever have to remember where I parked my car in a large lot or garage.  If there is a number or letter marking the spot, he will remember it.  For a year or more.  After his one seizure, we made 4 separate trips to Walter Reed National Medical Center in Washington, DC to see a pediatric neurologist.  A year later, he could still tell me the dates of each of those appointments, and the letter and number marking where I had parked the car in the garage on each date.

3. An aptitude for music

This really isn’t shocking, since both of his parents are professional musicians.  But some of the things he can do really blow me away.  For starters, his pitch has always been good.  Many children with autism can sing before they can speak.  SB was able to sing whole songs that he had only listened to once or twice before he could speak in complete sentences.  And his pitch was always spot-on. 

When he was 4, SB’s preschool teacher called me one day to say, “Did you know that he can identify the instruments he’s hearing in a song the first time he listens to a CD?”  She was floored!  Of course I knew this, and hadn’t given it much thought.  I guess I didn’t realize that it wasn’t normal.  (Since both of my kids are on the autism spectrum, I have a hard time identifying what is “normal” and what isn’t.)  SB has been listening to his parents play instruments and attending Air Force Band concerts his entire life.  Heck, he was hearing daily clarinet playing while still in the womb!  It wasn’t all that surprising to me that he could identify a flute, trombone, guitar, violin, and tuba while listening to children’s CDs.  But knowing that his preschool teacher thought it was incredible was pretty cool.

My parents gave SB an electric keyboard for Christmas one year.  Like a lot of gifts, he didn’t take to it right away, but it soon became his very FAVORITE thing to play with, and still is.  I taught him to play a few tunes by memory, but he doesn’t really know how to read music.  In fact, most of the time he plays with it, he is just randomly pushing buttons and pushing keys, and for the longest time my husband and I just assumed that he was using it to stim like he does with so many other toys.  And he really is stimming a lot of the time he is using the piano.  But after a while, we started to realize that sometimes he was playing real chords.  And then later, he started to TALK about the chords.  “Hey Mommy!  My favorite chord is g diminished 7th!”  “That’s nice, sweetie.  Wait….what?!?!?!”  It turns out that the keyboard has a display, and when you play a group of notes, the display shows you which notes you are playing on a staff, and also tells you what chord, if any, that you are playing.  We had no idea he was doing it, but SB has been teaching himself chords.  Major chords, minor chords, 6th chords, 7th chords, flat 9 chords…you name it.  He is 7 years old, and he is teaching himself music theory that I didn’t understand until I was a music major in college.  I can even quiz him.  I can say, “Play me an F major chord.  Now play me a d minor chord.  Now do a c diminished 7th chord.”  And he can do it.  His knowledge and understanding of music theory has many holes in it, however, and whenever I try to jump in and teach him some basics, he pushes me away.  He wants to play HIS way.  And I don’t want to dampen his enthusiasm for music, so I haven’t pressed the issue too hard.  But maybe this summer, when there is no homework to tackle, his Mommy may give him a crash course in music theory!

4.  An aptitude for numbers and math

Many people with autism are good at math, science, and computers, so this isn’t all that shocking, either.  But it’s still neat.  At age 4, SB could do simple addition problems, like 4+2=6, so I decided to push him a little bit.  I got out a big bag of Goldfish crackers (his very favorite snack) and introduced subtraction.  I called it “take-away,” and I just laid out the crackers on the table.  “If you have 6 Goldfish crackers, and you take-away 2, how many do you have left?”  I let him eat the 2.  He had 4 left.  I drew the math problem on a piece of paper.  He understood how to do subtraction problems in less than 10 minutes. 

Both boys like to draw with sidewalk chalk on our driveway.  SB usually draws lots of curvy roads that dead end.  Then he draws a dead end sign at the dead end, and then jumps up and down excitedly about his dead end.  Yes, he is perseverating (stimming) on dead ends.  Sometimes I try to redirect him to draw something more useful and appropriate, and sometimes I am just too damn tired.  One summer day when he was 5, and on a day that I apparently had a lot of energy, I encouraged him to do some math problems on the driveway.  He did a couple of simple ones like this: 5+2=7, 3+8=11.  Then, I got inspired, and I drew 23+49.  (But I drew them in columns, which I can’t do here in this format.)  He answered 612.  I saw where his brain had gone: 3+9=12, and 2+4=6.  612.  So I showed him how to carry the 1.  23+49=72.  Immediately, he started drawing math problems that required carrying all over the driveway.  Carrying was fun!  And even more exciting was that he would tell me BEFORE writing the problem, “Hey Mommy!  This one will need carrying,” or “Hey Mommy!  This one will NOT need carrying!”  And he was always right.  (As you can probably tell, pretty much all of our conversations these days start with “Hey Mommy!”)  Our driveway was covered in numbers, and his understanding of math had just skyrocketed.  And it really wasn’t even that hard for me to teach him.  He just sort of “got” it.

One of his current favorite DVDs is called “Multiplication Rap.”  It’s just that – over 45 minutes of cartoon characters rapping about multiplication.  His very favorite section is where they “skip count.”  You hear in a rhythmic voice, “2…4…6…8…” to a funky rap beat.  Next is, “3…6…9…”  And then it skip counts by 4s, then 5s, and all the way through 12s.  SB can recite along with every word.

Just to show you how much and how often his brain thinks about numbers, here is a picture of some of his work from kindergarten.  He was supposed to turn his worksheet over when he was finished and draw a picture.  This is what he drew:

 

 

5. A personality that is outgoing, friendly, and charming

SB is very socially awkward.  He has been known to approach someone that he barely knows and blurt out something like, “The lion didn’t want to eat the zebra!”  This usually just confuses whoever he is talking to, since they are missing key pieces of information, such as, “I watched the movie Madagascar last night, and I thought that the lion was going to want to eat the zebra!  But they were actually friends!”  But the truth of the matter is that he TRIES.  He approaches people, he talks to them, and he generally shows an interest in them.  He memorizes their birthday and their house number.  He comments on their clothes or their hair.  (Or sometimes, less socially appropriate things, such as their weight or their lack of hair!)  He’s cute, has a beautiful smile, is very energetic, and people generally find him charming.  (Well, adults generally find him charming.  I think his peers find him a little strange.  The girls seem to turn on the mothering instinct around him and feel the need to help, guide, and take care of him, which is actually pretty cute.)  I don’t think he would ever purposely hurt anyone, and I am extremely thankful that he has never been violent or aggressive towards others.  When he was finishing kindergarten, I heard that there were several first grade teachers at his school who were “fighting” over who could have him in their class!  I also heard that there were several second grade teachers who were already discussing who would get him the next year.  I wanted to pull all of these teachers aside and say, “Are you SURE?  Do you realize that he’s kind of a lot of work?”  Whenever I have the chance to pick him up at the end of the school day, I’m amused by how long it takes us to get out the door.  He has to stop and talk to EVERYBODY!  All of the staff knows him, and they all seem to genuinely enjoy chatting with him.  It’s very sweet.  His parents, teachers, and therapists are constantly working with him on the intricacies of social interactions, and it is slowly getting better, but I think conversing with others is something that will always be difficult and unnatural for him.  However, I am confident that his outgoing, charming, friendly, and sweet personality will benefit him throughout life, and will hopefully encourage others to give him a pass when it comes to awkward social behavior.

Well, it’s been fun summing up all of the things that SB is good at.  He’s quirky and odd, but he’s also smart and charming, and I love him for it.  But now, it’s back to toileting issues, handwriting issues, personal space issues, loud vocal volume issues, working on reading comprehension, inappropriate classroom behaviors…

 

 

 

Saying the wrong thing

It’s not an easy thing to talk to someone right after they have a death in their family, but at least there is an accepted script to follow.  “I’m very sorry for your loss,” or “You are in my thoughts and prayers.”  It may be an awkward conversation, but everyone knows where to start.  There are also some acceptable things to say when you learn someone has cancer, like “You’re a fighter.  You can beat this.”  I am still struggling to come up with the right thing to say to a parent who has just learned that their child has autism.  You can’t say, “I’m sorry for your loss” because a child with autism is not dead, nor is he in any danger of dying of autism.  Yet the parent is definitely going through a variation of the grieving process.  You can’t say, “You can beat this.”  Autism is not something that goes into remission.  That child will always have autism.  You can’t say, “I’m sure he’ll be fine” because you don’t know that.  No one does.  What can you say to this parent that will be supportive and kind, yet won’t offend them or make them feel bad? 

After SB’s diagnosis, I told everyone I knew.  There was no way I could avoid talking about it.  It became the only thing in my life, the only thing that I thought about all day long and all night, too.  If you know me, you know that I’m not very good at hiding my emotions and feelings on a normal day.  So there was no way I was going to be able to go about my day without talking about this huge thing that was happening in my life.  Everyone I told had a response that I’m sure they thought was kind and supportive, but I got offended a lot.  No one seemed to know the right thing to say.  Everyone said things that made me either sad or angry.  Why was everyone saying the wrong thing?

The answer is that I was so irrational, so sad, and so overwhelmed that there was literally NOTHING anyone could say that would make me feel better, until I read a certain book.

Do you have a favorite book?   Not just one that you read a lot, but one that you have paper-clipped your favorite pages and underlined your favorite passages because they speak to you so clearly?  I do, and it’s called Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life.  This book is authored by two women.  The first is Lynn Kern Koegel, who is an expert on autism treatment and one of the founders of the Autism Research Center at the University of California, Santa Barbara.  The second is Claire LaZebnik, who is an author of fiction and the mother of a child with autism who was treated by Lynn Kern Koegel.  All of the advice in the entire book is excellent, but it is the segments of the book written by Claire that I really love.  Everything she writes in this book makes me want to jump up and down and scream, “Yes!  That is exactly how I felt!”  

One of my favorite sections of the book is where she describes how she got offended by everything people said to her in response to her news.  I’m probably quoting way too much of her book here, but I just feel like it all needs to be said:

I know I said I was glad I told people, but I have to admit that I was horrible about judging everything said to me in response back then.  I was hurting all over, and however calm and rational I may have sounded, inside I was quivering with the expectation of being hurt more.  Let me give you some examples of the innocuous things people said and how I overreacted to them.

There were the people who jumped a little too eagerly at the news, in my opinion – “Oh, well, THAT explains it.  I mean, it was clear something was going on…”  That reaction always pissed me off.  Are you telling me my kid always looked and acted weird to you?  You never said anything to me, but now you’re telling me you were sitting there JUDGING us all the time?

(Remember, I wasn’t being rational – I was being emotional.  Also remember that I didn’t say any of this out loud.  Thank goodness.)

Another group went for reassurance.  “Oh, really?  Well, I’m sure in a few years he’ll be fine.”  Yeah?  How do you know that?  The experts we’re consulting don’t know what lies in Andrew’s future, but you’re so incredibly clairvoyant you do?  Give me a break.

Sometimes people would try to act like it was no big deal, that they themselves went through something similar with their totally normal kids and came out the other side.  “The early years are hard for all kids,” they’d say.  “We were so worried when our kid was three and didn’t play catch, and now look – he’s captain of the softball team!”  Wait a second – was your kid diagnosed with autism?  Excuse me, but was your kid diagnosed with autism?  WAS HE DIAGNOSED WITH AUTISM?  Because, if he wasn’t, I don’t really want to hear about your experiences.

I knew that those who expressed sympathy meant well – “Oh, how awful!  I’m so sorry for you.  You must be overwhelmed,” etc.  The problem was that, at that emotional point in my life, they only made me feel worse.  My son – my gorgeous, bright, loving little boy – had turned into something so awful that people pitied me for having him.  That sucked.  (Later, I grew to kind of enjoy the pity and sympathy.  But that was later.)

Worst of all were the people who questioned the diagnosis without any medical or neurological information to back up their challenge: “Are they sure?  Because he looks fine to me.  Sometimes doctors just SAY these things because it’s what they like to say.  I just don’t believe it.”  You don’t, huh?  Did it ever occur to you that we didn’t particularly want to believe it, either?  That we ran home to read everything we could about autism only to discover, with a sick stomach and heart, that Andrew had pretty much EVERY SINGLE SYMPTOM of your basic classic autism?  Self-stimulation?  Check.  Social delays?  Check.  Language delays?  Check.  Inability to make eye contact?  Check.  Inability to point to something he wants?  Check.  Inability to follow simple instructions?  Check.  And so on.  We’re telling you our kid has autism because we’ve done the research and know it’s true.  So please don’t start second-guessing us or the experts we trust. 

I realize I’ve gone on kind of at length about how easily I slipped into feeling offended at that time, but it’s for a reason: I want to make it clear how incredibly fragile and wounded the diagnosis had left me.

The truth was, of course, that every friend and relative I spoke to was kind and sympathetic.  They all offered help and support.  I just couldn’t see it, because I was one raw gaping wound, an exposed nerve, a total wreck.

You are, you know, when you get that diagnosis.  You’re a wreck.  There’s this huge thing in your life that wasn’t there before.  It sits there looking at you, and you try not to spend all your time thinking about it, but it just takes up too much space.  You can’t not think about it all the time.

Reading this passage of the book felt like someone was reading the thoughts out of my mind and writing them down more neatly and concisely than I ever could.  And not just reading my thoughts, but reading things out of my subconscious that I didn’t even know were there.  It was actually kind of eerie.  Before I read this, I just thought that no one in my circle of friends and family knew what I wanted or needed to hear.  But after reading this, I suddenly realized that the problem was ME.  Of course people were saying nice and supportive things to me.  I was just too wounded, too irrational, to comprehend it.  I recognized that I needed to stop judging everything people said and just accept their words.  This was so much harder than it sounds. 

(This is not the only passage of the book that I really identified with.  There are many others.  And all of the advice in the book is practical, logical, and positive.  If you have a child with autism, this is a MUST READ!)

There were a few other types of responses that we received that Claire does not mention.  Many people replied by complimenting our parenting.  “Oh, you and Charlie are such wonderful parents!  I’m sure you’ll do all of the right things for him.”  Of course, this is a kind thing to say, and it should have made me feel better.  But it really didn’t, because I had no frame of reference for parenting in a situation like THIS.  How could I know that I was going to do a good job parenting this child with special needs?  I didn’t know a thing about autism!  I once assumed that I knew how to be a good mother, but everything that I thought I knew about parenting had just been thrown out the window.  Another thing people said to me that didn’t help at all was, “God only gives you what you can handle.”  I do believe in God, yet this phrase gives me no comfort.  I think there are plenty of people in this world who are dealing with more than they can handle.  Again, I recognize that these thoughts were meant to be caring and supportive, and people were trying to be helpful, but I just couldn’t see it or accept the support because I was in this constant state of despair.

The only thing I liked hearing about in the time right after SB’s diagnosis was success stories.  “Oh, my neighbor’s kid has autism!  He’s in third grade now and doing really well in school.”  “My nephew has autism, and he is so sweet and kind.”  I clung to stories like these.  I thought about these children often, even though they were children that I had never met.  I needed to believe that it was possible that my child could maybe, someday, be just like them.  Very recently a friend said to me, “Sometimes it’s difficult to imagine your children being different than they are today.  But they will be.”  So true.  When SB was 20 months old, it was almost impossible for me to imagine that he would ever be different from the nonverbal, completely distant toddler who could not communicate with us or understand what we were saying, so he just cried and threw tantrums all day long.

My goal with this essay was to give the reader advice on what to say to a parent who has just learned that their child has autism.  And now that I’m in the concluding paragraph, I’m not sure that I’ve done a very good job.  In the “definitely what NOT to say” category, I can tell you that all comparisons to Dustin Hoffman’s character in the movie Rain Man made me cringe.  The phrase, “you are in my thoughts and prayers” is always good, I guess.  Be a good listener, and know that there may not be anything you can say that can make this painful time go away any faster.  But most importantly, give the parents success stories.  Tell them about real children with autism that you know that are thriving under the care of the right therapists.  And if you don’t have any success stories to tell because you don’t know any children with autism personally, then you can tell them about mine.

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