Blessings

So, I have decided to move past the anger talked about in some of my recent blogs.  Don’t get me wrong, I still maintain my positions, but I refuse to let these issues take my focus away from God and my children.  Reading through 1 Corinthians, I am reminded that there have always been misguided people, there have always been divisions, and there have always been judgments.  What I am responsible for is how I behave and react.

I have decided that my last posting for April will be on all the blessings that our family has received this month.  It really has been a blessings-filled month!

·         We found a local church that offers free respite days for parents of special needs children.  My husband and I were able to enjoy a romantic night out and the boys had a lot of fun.

·         TJ went to science camp—and survived (so did we)!  More than that, he came back with a lot of great stories and new experiences.

·         TL was approved to start having some services at an autistic center on top of his in-home ABA.  This means he will get more chance to interact with other children and gain social skills.

·         TL can now identify all numbers 1-9 and letters A-D.

·         TL said his first two-word combination (that was not an echo) last week, “bye-bye, Daddy.”  Since then, he has put more words with “bye-bye” and has begun to combine words with the phrase “all done.”

·         On Saturday, TL said his brother’s name.  Usually, he has called him “brother,” which is cute, but TJ really wanted him to say his name.  He got that wish and TJ was over the moon!

·         On Sunday, we enjoyed a wonderful Easter morning and TJ adjusted well to us helping a different service at church—although he said it was little too wild for him.

·         After church, we took a spontaneous trip to Monterey and the boys had a great time at Dennis the Menace Park.

·         And just today, TL got up and after having a diaper change by Daddy, he came and gave me the biggest and longest hug he has ever given me.  The whole time he said “Mommy, Mommy.”  He finished off by giving me a kiss and another short hug.

God has blessed us this month and every month.  Focusing on these blessings is how I choose to react .

Autism: We Need Acceptance and Training—Not A Cure

As I write this, I am fuming mad.  I am so filled with anger and frustration and want to find a productive way to channel it—so, I writing in my trusty blog.  Why am I angry?  I am angry at the parents of autistic children that insist on using biomedical treatments that claim to cure autism.  I am tired of hearing how autism is caused by vaccines, gluten intolerances, gut problems, mercury poisoning, blah, blah, blah…

I am tired of being mocked for believing that my children were born this way—and it is just how God designed them.  I am tired of there being a lack of support in the Christian community for evidence-based therapies in autism.  (This is not a slight at any of my friends, as you guys are not the problem.)

I did a search yesterday—looking for online communities, blogs, and books by Christian parents—and was appalled that they all supported biomedical interventions.  They all supported the crazy claims and the unproven causes.  They all claimed to “cure” or dramatically improve their children using alternative medicine.

Now, I am not going to throw everyone under the bus that uses alternative medicine, but I don’t believe all of it honors God--especially when it claims to cure a developmental disability.  So much of it is tied into the New Age movement and mysticism (and yes, I do have personal experience with this and am not just passing judgment).   

A great quote I read somewhere was, “You know what happens to alternative medicine that is proven true?  It becomes medicine.”  There are so many conspiracy stories about the government covering up the supposed vaccine link.  This doesn’t even make sense.  Medicine is a business and if modern medicine truly believed that alternative therapies worked they would be pushing them and profiting off them instead.  But the research is just not there!

Sigh.  I am just tired.

I love my sons just the way they are.  TJ has such a different way of looking at the world.  I can’t imagine taking that away with a “cure.”  There is all this talk of gastrointestinal problems in autistics and how they need special diets to relieve the pain they are in.  This is part of a movement that claims there is this connection between psychology and your gut. 

I always wonder if these parents talk to their kids (the ones that have verbal children).  I have asked TJ if he has any pain. No.  Do certain foods bother him? No.  And what does he think of people that put kids on these diets?  Well, he is blunt and he thinks they are stupid (his words).  He asks me why the parents can’t just accept the kids.

Aha! Acceptance!  Why can’t we accept them?  Sure, give them the tools they need, like speech and social skills, but accept them.  Don’t worry about placing blame.  Don’t worry about why they are autistic.  Just accept them.  Isn’t that what we all want? To be accepted?  How are my sons any different?

I’m still angry and I am praying God shows me how to let the anger go.  I want to be at peace and shrug off the crackpots and misguided.  I want to focus on my children and raising them to be good disciples in Christ.  But I also want them to be free to be themselves.

By the way, if anyone knows of a Christian organization or author for autism that does NOT support biomedical interventions, please pass it along to me. 

PDD-NOS: The Catch-all and The Catch-22

My oldest son, TJ, is diagnosed with PDD-NOS.  This is basically a catch-all diagnosis that means he has many of the autistic traits, but not enough to diagnosis him with autism—although, PDD-NOS is on the autistic spectrum, so he is autistic.  Confused?  Yeah, so am I.

Children with PDD-NOS are often mainstreamed in regular classes, like my son, and they tend to blend in pretty well with the general population.  If you didn’t know my son was autistic, you probably wouldn’t pick up on it.  He doesn’t openly spin around anymore, he gives fair eye contact, doesn’t line up objects anymore, doesn’t repeat random phrases much…pretty normal kid on the outside.

What people can’t see if the Catch-22 of PDD-NOS.  TJ has a hard time with the little things in life, like using a knife or controlling the temperature in a shower.  We recently ran into a problem with him and the changing of toilet paper rolls.  He threw one away when there was still plenty of tissue left.  I can’t tell him to use a roll until every piece is gone or he will take this literally and use every scrap.  I can’t say to use it until most of it is gone, because he will figure that when it is down to 1/4 roll, that most of it is gone.  Instead, I need to wait until a roll is empty and show him what it should look like.

TJ is going to middle school next fall, so we have to look at how to prepare him for that.  We will be having him pick out a combination lock for his school locker soon.  He will practice his combination everyday and to simulate the stress of opening your locker between periods, we will have him open the lock during hurried moments at home (say right before we rush off to church). 

He still struggles with anything more that a two-step command and needs most things broken down for him.  He still “forgets” something we have trained him on a million times.  Every time we go shopping, we have to tell him not to touch all the shelves as he walks by (he likes the feel of it) or not to lean on the cart right in his brother’s face (this bugs TL and he will take a swipe at TJ).  I have yet to figure out why going shopping gives TJ temporary amnesia, but I think it might be a sensory overload.

He also does not understand the importance of being polite or discrete when we interact with each other.  He will repeatedly make a comment like, “Why do they put signs in Mexican, when we are in America?” right when we are standing in a Mexican restaurant (and of course surrounded by Hispanics, who are now glaring at us).  Ethnic differences have been a real challenge for him, which is baffling, considering my husband is one half Portuguese and a quarter Korean.  But, we work on this—one situation at a time.

All children need to be trained in some of the “little things,” but most of them can learn the lessons quick and move on.  With TJ, it is a daily battle of learning the way the rest of the world works.  When you see TJ and how normal he seems, just think about the hours of training he has gone through.  Every thing that we do without thinking, TJ has had to spend hours learning.  

The “Eyes” Have It

There is this intense connection by the general population of autism and eye contact.  Yes, poor eye contact is a major “symptom” of autism, but it doesn’t define children on the spectrum.  This subject has become more relevant as Robert MacNeil (or MacNeil-Leher fame) made strong statements about the importance of eye contact on his AutismNOW series.  These statements have prompted a backlash in the autistic community—specifically by those with autism themselves (great open letter to MacNeil here).

Both my sons have difficulty with eye contact, but TJ has had to deal with it the longest.  While this can be a communication barrier, it also helps the child cope.  Sometimes it is just too much stimulation to visually connect with someone.  But not everyone gets that.  There are two incidents that stick out for me—and they both happened in the last year!

The first had to do with a yard duty at my son’s school.  She helps with crowd control in car line and my son was not doing everything to her liking.  She decided to confront him while he was getting into my car by holding the car door open and demanding his eye contact.  I told her to leave him alone and she still demanded he look at her.  Eventually, she backed down, but there are so many things that were wrong with this scenario.  It resulted in complaints at both the school and district level, as well as a consultation with a special needs lawyer.

I attribute this episode to the poor training of educational professionals on interacting with children—especially those with autism.

Then there was the one incident involving a mom I knew that had recently had her daughter diagnosed with autism.  She is in what I call the “whacky camp” and believes that evil gluten caused her daughter’s condition and the true answers are in the holistic community.  Whatever.  Well, one day she came up to my boys when I was about 15 feet away taking care of something.  She started commenting on how beautiful their eyes were.  Seemed harmless, but I continued to listen to her interaction. 

She started zeroing in on TJ (TL wasn’t diagnosed yet) and asking him over and over again to show her his eyes.  I could tell that it stopped being about the color of his eye and more about her testing his eye contact skills.  He was getting a little uncomfortable, but is pretty much a pro now and dealing with these social situations.  She gave up after a few exchanges, and while I could have jumped in to save him, it would have turned a forgettable situation into something TJ would dwell on. 

But, why was she doing this?  I don’t have a clue.  Maybe she felt the need to “check” his autism (like years of therapists and doctors were wrong).  Maybe she was comparing his eye contact with her daughter’s.  Whatever her reasons, it was just inappropriate. Needless to say, that connection ended in a big blowout over our different stances on autism among other things.

Now, I did talk to TJ after his interaction with this mom.  I just approached it “dumbly” (what was so-and-so talking to you about?).  He told me she wanted to see his eyes.  I then decided to open a discussion about eye contact and asked him how it felt when people wanted to “see his eyes.”  He said the most profound thing I have ever heard about eye contact and will close with his quote:

“Eye contact is like homework; I don’t want to do it, but I know I have to.”

Too Much of a Good Thing

Too much of a good thing—that seems to be the theme in my house this past week. 

TJ had a great time at science camp and came back with everything he was supposed to (due, in part, to a warning that he would pay 50% of any replacement costs).  But even he would admit it was probably a little too much of a good thing. He came off the bus with a hoarse voice because he overdid the screaming at the closing assembly.  He was also extremely tired (apparently it is fun to be with friends for 4 days, but you soon discover they snore when they sleep).

TJ’s homecoming was great for everyone, as we were truly grateful to God that he came back safe and sound.  But he has had this whole week off for Spring Break and that can definitely be a little too much of a good thing.  Being cooped up at home so much for TL’s therapy has made things even worse.  I would love a day at the park, so the boys can get rid of some of their excess energy.  Maybe tomorrow? Sigh, we’ll see.

Then there is TL.  His favorite therapist has left the organization and the replacement therapist has had to deal with a family emergency this week.  So, TL has had the same therapist all this week (and this is one that he doesn’t completely “click’ with).  After the second day, it was apparent that this was too much of a good thing.

When I mulled this topic over, I realized that “too much of a good thing” is so applicable to autistics.  The repetitive and obsessive behaviors that autism is “known for” are really instances of too much of a good thing.  It is considered normal to like trains, but some autistics take it to the extreme and memorize every type of train or pamphlets full of train schedules. 

My life is full of these “good things” taken to the nth degree—TJ with Transformers, TJ with Bionicles, TJ with Garfield, TL with circles, TL with Disney Channel, TL’s echolalia—oh and TL’s echolalia!  (Can you tell I am a little tired of hearing the same phrase repeated 50 times?).   I guess I should be a little more used to dealing with “too much,” but, alas, I still feel like a novice.

Maybe next week will be more balanced—meaning just the right amount of too much!

Turning Off the Crystal Ball

Every parent worries about their children, that is not specific to special needs parents.  What is different is the type of worries.  My older son, TJ is scared of all flying insects—and I mean really scared.  He has run into busy streets to get away from a moth or a butterfly.  So, when he decided he wanted to go on his 5th grade science camp trip, well, worried didn’t even cover what I was feeling,  I envisioned him running off the mountain trail because a mosquito or wasp flew by.

On top of this, he had never even been camping (none of us like the outdoors enough) and he had never been away from home over night.  And, trust me, we did everything we could to talk him out of this, but he was determined that he wanted to do this.  So, we did what we knew we had to do—we completely supported his decision.  Ugh!

We had to turn off the crystal ball and stop looking at the worst possible outcomes.  Over the past few months, we taught him how to control the temperature of his own showers, since he would have to do this at camp.  We arranged for a tour of the camp about a month ago, so that he was “front loaded” (knew what to expect).  We had him help in every stage of the packing—from labeling to sitting on the bag and zipping it up.  By Tuesday, he was as ready as he was going to be.

But even though we turned off the crystal ball, we still adapted things to his abilities.  The camp suggested that students pack a list of the things they brought in their luggage.  This sounds like a good idea and we were all for it—until I thought about TJ.  He would probably get so worried about making sure everything was on the list, that he would empty his dirty laundry bag out and count every sock.  Ick!  But I didn’t want to put him in a box, so I asked him if he wanted a list in there or if it would be too overwhelming.  And guess what?  He said it would be too much for him!  He gets his limitations and only pushes himself when he knows he is ready.  We must have done something right!

So, now TJ is at science camp and definitely having a better time than we are.  The house feels weird without his zany energy.  His room is so quiet and there are no crazy Garfield jokes at dinner.  We try to focus on TL, giving him some “only child” time, but it is just not the same.  TL is also having a hard time adjusting and doesn’t understand why his brother doesn’t come out of his room when he calls for him.  TJ comes home on Friday, which is also our wedding anniversary.  It will be a joyous day filled with love and appreciation for our little family.  That is, until things return to normal and the boys butt heads again!