Tuesday, January 25, 2011

I Saw The Signs

Post by LeMira

The signs were there from the beginning, but I just assumed they were quirks.

When he was a baby, he never looked at lights.  I was a little confused why he was not so memorized with lights like so many other babies.  Then, I found out he had cataracts due to being born prematurely. This problem warranted surgery, but I still found it odd that he would stare at his mobile and "yell" and "talk" at it.   After he had surgery, he began to notice lights more, but never like others.   Instead, he was mesmerized by the fan, but that wasn't so unusual, a lot of babies, if not most, are intrigued by a ceiling fan.

What was odd, though, was that he was mesmerized by all things spinning.  He would stare at our stroller and the wheels.  If something would spin, he would spin it.  If he could spin in it, he would, and he never seemed to get dizzy.

Another quirk was that he began to bang his head or inflict pain on himself by biting his hands.  I remember disciplining him and getting upset and trying to teach him not to do those things when he was only nine months old.  Sometimes I felt like I was yelling at him trying to get him to stop.  I figured the head banging was due to teething pain.  It wasn't.

Numbers.  Anything with numbers:  clocks, CD players, timers, calculators, thermometers, calendars.  It has numbers, he's there.  This obsession began at age two when we bought him his first CD player.  He would blast the volume, but most of all, he would open the lid, spin the disc, and then continuously change the track number.  Songs were named not by title or turn, but by track number.

Rocking and/or swinging.  When he first came home from the hospital, he loathed the swing.  I originally thought it was because the nurses used it all the time to calm him during his stay, however, I now realize that the type of swing I had (a take-along) with all of it's lights, annoying music and fish swinging in the face were too much for him to handle.  When he discovered our glider ottoman, he would glide and listen to music for a long time.  He used it until it broke when he was five or six.  Then he discovered swings.  At the park, that's where he would stay the entire time.  I've since learned that the rocking/swinging seems to be his stimming, and it is a good way to help him relax and wind down.  Too bad his tree swing broke over the holiday break.

Music and buttons.  If a toy has music, it's his favorite.  He's always responded to music, and he loves to make up his own songs.  He's distinguished between beat and rhythm since was at least 18 months old.

Someone, I believe it was Natalie, first mentioned the "a" word (autism) when I mentioned how entranced my son was with spinning things, and she told me that it reminded her of a child she new with autism.  I quickly dismissed this as my son definitely loved social contact and people.

When he was tested for preschool, the examiner was a former colleague of mine when I worked as an elementary school teacher.  When I told him about some of the "quirky" things that my son did, he mentioned "autistic tendencies."  I immediately spouted off why my son did not have autism, and I again dismissed the suggestion.

It was a family trip to Disneyland that I started to get really worried.  My husband's dear aunt introduced us to Sensory Processing Disorder and the book the Out of Sync Child. Many of the symptoms seemed to fit my son, but as he progressed to transitional Kindergarten and did not qualify for Occupational Therapy, I knew that there must be more.  I wondered about ADD.

That's when Natalie began teaching me about PDD-NOS. 

It took me until my son was six years old to get him diagnosed and with services.  It really is better to get services started before age five, or so I've heard (I can't give an exact source on this at the moment).  However, we were lucky.  Since my son was born severely premature, he had all the advantages of therapy from the very beginning.  Once he came home, he had speech, vision, and occupational therapy.  When he turned three, he was tested for preschool; and when he was five, he moved into transitional kindergarten -- all due to "developmental delay due to prematurity."  He's had services from the very beginning.  We are lucky for that, for the therapy he's received has helped him more. 

Yes, I've had the "what-ifs," but I'm happy that we are where we are.  My advice, if you have a question, ask.  If you wonder, research.  If you have the nagging feeling that something is "off," listen to it.  It's okay.  It's not your fault.  It just is.  Parental Instinct, especially Mother's Instinct, is right more often than not.  Trust it.  Remember a diagnosis doesn't define you, it explains some things, but most importantly, it's meant to get your child and you the help you both need.

My son has come a long way, and so have I.   Sometimes it seems like these quirks are too much and too much like road-blocks, but to be honest, they are a huge part of who my son is, and I wouldn't trade him for the world.

Thursday, January 13, 2011

Just Like Mom

(Post by LeMira)

At some point, we all look at our kids and start comparing their attributes to ours and to the people around us.  It's natural.  "He bounces his leg just like his dad," or "his mom bites her tongue in concentration, too."  For my son, it's obvious just by looking at him who his father is, especially when they're together.  My mom thinks we should have named him after his dad because they look so similar.  He even has some of his dad's personality traits, but not as many.  When it comes to many of his more noticeable traits, he's just like me.

As a child, I cried whenever someone raised her voice or if my parents started arguing.  I tense up when voices start rising and opinions start conflicting.  I just want everyone to get along. 

I'm a people-pleaser.  I want to like everyone, and I want everyone to like me. You tell me that I did something wrong, I cry -- not because I'm offended, but because I'm affected, deeply.  My son is exactly the same way.  When I raise my voice, he cries.  He's very fearful of getting in trouble.  He's a rule follower (I was, too).  You don't break the rules, you just don't.

It takes some time to feel comfortable in a big crowd of people. We wait a minute or two to volunteer, if we volunteer at all.  If we are black sheep at home, in public, we're white, like everyone else.  We obey all the rules, follow the crowd.

We're both very passionate.  Although we are affected when others begin disagreeing, we are not afraid to be right.  We are not afraid to voice our opinions at home or with those whom we are close and do not feel stranger to.  We want to be right, we are afraid of being wrong. 
Not good.

I have this uncanny ability to come "un-glued" very easily and very quickly without warning.  When I'm frustrated, deep breaths don't usually do it for me.  I'm someone who needs to break dishes, punch a wall, throw a chair, cry uncontrollably, or scream.  My son is the same way.  Yes, a lot of it is inherent behavior, I've learned that just by watching him, but I know that much of it is because it's how we handle things in our house.  It hasn't been easy to watch this lately, knowing that he has the prime example in his mother.

I'm working on a longer fuse, or getting rid of the fuse all together (meaning I never blow, not that I blow every time), but it's so hard.  I'm hypocritical when I yell at my son to not yell every time he's frustrated.  Yeah, nice one.  Anyway, I've been trying to find ways to help us let off steam immediately; here are some of the things we've tried:

1.  Deep breaths.
2.  Count to 10 (never works for either one of us)
3.  Screaming into pillows
4.  Tarzan yell while beating your chest
5.  Screaming matches while plugging our ears
6.  Clasping hands and squeezing the life out of them -- either squeezing your own together or a partner's.
7. Raiding the pantry (I don't recommend this one)

What are ways that you blow off your steam to help you cope with your power struggles and frustrations?

Sunday, January 9, 2011

Transition and Incentive

A post by LeMira

The first week back to school from the holiday break was hard, really hard.  By Tuesday evening, I was ready to run screaming from my house and not come back.  We just weren't getting along, J.R. and I, that is.  His responses were mostly, "No," "I don't want to,"  "I don't like it," and "Grrrrr."  (Yes, he kept growling at me.) Instead, I just screamed into a pillow.

After meltdown after meltdown (his then mine, then his again then mine again), I finally remembered:  transition.  Transitions are so hard, and they are something I should never forget because they will always be hard for him.  At the beginning of the school year, I wrote about my son's anxiety transitioning to a new school with a new teacher. This time, the transition he was so worried about was having homework again.

The biggest problem is that he gets so fixated on not wanting to do homework, that he starts getting angry that he has to do it.  His anger flows through everything because then he starts counting down the days until Friday (when he has no homework), and he takes it out on us.  One little worry snowballs into something huge and affects everything.

Side-note: I was curious if it was just me (because sometimes it is), or if my son struggled at school this week.  When I went to volunteer on Friday, I talked to his aide, and she said that she'd noticed he'd regressed in his math. Two weeks, that's all it has taken for him to regress.  Do I think it's because he has a retention problem?  No, it's all because of his anxiety and his fear of failure which leads to a lack of self-confidence (of course, that's ANOTHER post for another time).  Basically, I was relieved just a little to hear that he struggled at school, too, because I wanted to make sure that it wasn't just me as the common factor, (not because I was happy he's struggling).  I just need to know when it is across the board, you know?

By Wednesday morning, I knew that something had to change.  We started doing reading and speech in the morning before school and math and spelling after school.  He only has "two homework" (as he would say) after school now.  Breaking up the workload has a made a wonderful difference.

After school that same day, he and I were waiting to get a prescription filled and were wandering around the store.  He found the ONE loud toy on clearance and immediately began his whining and begging for the "electric" guitar.  At that point, I just wanted to give in and not deal with the tantrum, but then I had an epiphany.  I could make him earn it.  Yes, I'd buy it (I couldn't go back later because the store is closing its doors in a few days), but then I'd make him work for it. 

I started a point system.  Each day he can earn points for doing his chores and homework with a good attitude, being happy when playing games, and just following directions.  He loses points by yelling, screaming, or talking back to mom and dad.  At the end of the day, he earns a sticker for every five points he earns.  Each day is a new day, and we start back at zero points.  I keep the points on a whiteboard on the fridge so I can easily put them up and wipe them off.  When he earns 20 stickers, I'll take the guitar off the top of the fridge, and it's his.  In the end, he'll earn a total of 100 points. 

At first I thought it would take about two weeks for him to adjust and transition, but I've realized that it's taken a little less.  Since adding the incentive, he's come a long way.  He has something to work for, and I'm glad it's successful so far.

When I bought the guitar, I rationalized that bribery was okay.  After thinking about it more, though, I realize that we all need motivation, and we all work harder when we see results.  He's at an age where he's still learning to control his emotions and reactions and learning appropriate behavior, and he apparently needs an incentive.  This is a good thing for something he wants.  I don't feel bad at all because he's earning it.