Wednesday, December 28, 2011

It's not all about You

It's been a long time since I posted, but an article that Natalie posted on Facebook caught my attention.  I really should post more here.  I'm noticing more and more a divergence between my son and the rest of the children his age and in his class at school.  The days are filled with "autistic" moments, but I don't always notice them because I'm used to them.  It's just JR.  Reading the article, however reminded me of yesterday's "moments."

Christmas just passed us on Sunday.  JR's dad and I were very good at getting him the things he loves -- anything with numbers on it:  a money bank that counts the money, a digital alarm clock, a toy mixer (you know, for baking), a calendar.  All of these things have something to do with numbers.  We also decided to get him something to just play with:  a remote control car.  I took my husband's advice and bought two so they could play together.

JR spent all day yesterday playing with his blue car.  It is such a fun car that has a wheel on top of the car so it can do flips (in a way), roll on its back, spin, and do some fun tricks.  JR loved making it go fast and making speeding noises to go with it.  He asked several times when his dad was going to be home.
    "But what time, Mom?"  when I told him that Dad would be home after work.
    "Can I call him?" 
     "Sure." JR dialed his dad's cell phone number and waited.  After the conversation (with which I was pretty pleased), I asked what time his dad said he would be home.  Was he still at work?  Was he on his way?  JR suddenly lost it.  He was crying, "I can't remember.  I don't understand."  After a few minutes of tears and yelling, he finally asked, "Mom, can I call him back to ask?"
    "As soon as you're calm."  When Dad didn't answer, JR whimpered and said, "He didn't answer."  (My husband later got the whimpering, sad message on his voicemail.)  When Dad finally did call back, I talked to him.  The dilemma was the he never told JR exactly what time (hour and minute).  He just said, "I haven't left yet, I've had to fix a problem at work."  You see, JR has to have specific times.  We're trying to teach him that we don't always have those, but he still feels like he needs a specific time - to the minute.  I told my husband to talk to JR again, and this time give him a specific time.  It worked.
     As we sat around the dinner table, JR and his dad discussed playing with the cars.  JR looked at his dad and said, "Dad, you can have the blue car, and I can use the red one."  If you remember, JR's car was the blue one - the one he'd been playing with all day.  I tried very hard to tell JR that he couldn't just tell his father how they were going to play, he had to ask him if he could play with his car.  I reminded him that the red car was given to his dad, and that the blue car was his.  I told him, "You have to say, 'Dad, can I have a turn playing with your car?'"
    JR turned to his father and said, "Dad, we can play with our cars for 5 minutes and then we can switch and I can use the red car."
    I shook my head and said, "No, JR, you can't say that.  You can't tell your dad how he's going to play with his toy.  You have to ask him if you can."  I then tried to give him another script he could say.  He still failed.  I wondered why he couldn't just ask and why he wasn't understanding.
    Just before they began to play, the answer came.  Something was wrong with the blue car.  JR never said anything about it, my husband spotted a loose wire under the car.  Thank goodness he is handy with things like that, and he fixed it.  You see, JR couldn't tell me that something was wrong with the car; he'd forgotten that part.  He only remembered that he couldn't play with the blue car for some reason and that he would need to play with the red car. 
    They played for a while together, having fun.  Eventually, my husband let JR play with the red car.  Turns out that both cars were on the same frequency, so they really couldn't race their cars at the same time.  Bummer. . . it would have been a GREAT social tool for him; instead, it turned out to be a difficult moment for him to understand why they couldn't play together and how to take turns.  Sharing is difficult (as you can tell).  You're probably thinking that you have the answers to this one, but I assure you that you'd be surprised how your answer may not work the way you think it would.  ;)
    I find that I'm constantly telling JR what to say and how to say it.  It's difficult.  He doesn't always understand facial expressions or why I tell him the things I tell him. I only hope that one day it will come naturally to him to think about others and how they feel.  That he should ask, not tell or do because that's what he thinks is right.  I hope I can teach him not only by telling him but by showing him as well.

Wednesday, August 24, 2011

Back to school, back to school

First grade is a learning process for me and will be for J.R.  Here are my random thoughts about it all.

He has a desk -- oi!  It's only the third day, and I've had to clean it out for him.  He had four or five papers jammed in the corners of the desk all with different drawings on them.

He has three folders, one notebook (for spelling), one binder, one grammar notebook, and a pencil box shoved into his little desk.  I sense confusion and disorganization this year.

So far,  I've already had to thin out his materials in his pencil box. The simpler, the better.

We had to drive back to the school to get his homework folder, and then I had to tell him to turn in his homework from last night because he didn't do that this morning.

If you were to walk into his classroom, you might think he is out of control as he rolls around on his exercise ball/seat.  However, if you know him, you realize that he is over-stimulated, and this is his way of calming down.  This is how he puts the world back in order.  I'm grateful his teacher is willing to let this happen in class.

I think all Kindergarten and First Grade teachers deserve an all-paid vacation just for surviving the first week. 

Friday, July 1, 2011

Soldiers in combat

Today I went to the playground with Ike and Mike, where we met some school friends from Mike's PDD classroom. These two kids love Mike and Mike loves them. I have come to know their mothers very well as we have hashed out our battles with our children.

We have different backgrounds, different lives, we are different ages. But we feel like soldiers fighting a war that we are unsure of the outcome. It is amazing the bond that is formed when you find people who are bleeding through the same experiences as you. The euphoria of someone UNDERSTANDING the feelings and desires you have. I guess this is why people with cancer tend to cling to one another. There is a level of strength when people come together in their struggles.

I can complain about trying to teach my children spontaneity while still keeping a structured routine so they can function. I can bemoan the tantrums, the tears, the heartache and they get it. I don't have to explain how huge the little victories are, they know.

While our children may not die from having Autism it is still a battle we fight. And while there is no cure, there is the hope that our children will be able to live a life full of love, laughter and acceptance. That is why we fight and why we will keep on fighting. It sure is nice to know it's not an army of one.

Tuesday, June 21, 2011

Water on the Head

There's something about water being on his head that JR just hates.  Showers make him nervous, and being dunked is traumatic.  I'm sure some of it could come from the fact that he has slipped under water a couple of times and had that drowning sensation.  I don't blame him for that. 

Splash parks are fantastic, aren't they?  Most of the time they're free (if you don't count your property taxes as the entrance fee), and it's really a glorified sprinkler park.  I know I would have LOVED one as a kid! 

Today I decided to take JR to the splash park without telling him beforehand.  I knew it would be a gamble if he would like it, but I also knew that I have plans to take him with friends in two days.  So, I had to acclimate him.  After about 15 minutes, of running in, dipping his toes or his hands and running back to the towel, he was getting more and more wet and didn't worry as much.  I can't say "didn't look back" or "didn't think twice," because I know my son by now.  He thinks about it very much and what he's going to do.  He lasted for about 25 minutes.  I was so proud of him. 

Is it bad to say that I'm proud of myself, too?  I didn't push him to hard.  I kept encouraging him and nudging him along, but I tried very hard not to force it.  I didn't give him the option of going home -- I didn't give him an out -- but I didn't make him run in the water.  I pointed out different children and how they were playing and what they were doing.  I didn't say, "Oh, see, now that kid is doing it right."  It was more like, "Oh, see that girl stuck her hand in the water, you could try that." 

I'm learning that I need to not be afraid to introduce new things to JR.  I'm worried about how he will react and that I will regret trying something new.  I'm working on it, and I think I'm almost to the point where I'm ready to look for opportunities that will push him because I'm almost ready for him to push back.

Friday, May 27, 2011

Celebrate a Moment!

J.R. vacuumed his room today!!!!

Okay, it took a bit of coaxing and encouragement, but he did it.   Good job, Bud!

Thursday, May 26, 2011

Dressing Dilemma

Post by LeMira

This morning was another reminder of how out of tune I am sometimes with my son.  This morning we had to go back to the school (he's been out for a week) for post-assessment with his Kindergarten teacher, his special ed. teachers, and the school counselor.  After breakfast he went to his room for a few minutes, and then emerged and announced to me, "Mom, I can't get dressed."

I looked at him and told him,  "You can do this.  Go pick out some clothes."

A few minutes later the same thing happened, but this time, he was more frustrated.  "Mom, I can't get dressed!  I need you to do it for me.  I opened the dresser."

At this point, I was confused, but also frustrated.  I tried to be in tune to him, and I started asking him what to do first, second, etc.  He responded, "Mom, I know that, but I can't do it. You need to come to my room."

I responded, "Yes you can; you're seven.  Just go get dressed.  Tell yourself, 'I can do it.'"  Ten more minutes passed, and he came and sat next to me on the couch in his underwear.  This time he was sobbing, "Mom, I can't get dressed."

I exhaled and followed him to his room.  "I can't understand what's going on this morning." When I got to his room, the bells finally went off in my head.  There it was.  He had found a red polo shirt -- a school uniform shirt -- but couldn't find any school uniform pants.  I had taken the pants and turned them in for the uniform exchange since he'll outgrow them by the end of the summer.  He knew he had to go to school, but he didn't understand that he didn't need his uniform.  He was confused at what to do.  I was upset with myself for not catching on earlier and for dismissing his frustration.  This entire episode took 40 minutes.  I should have gone in earlier. 

This dilemma reminded me that I have a good kid.  If he says he "can't" do something, sometimes it's because he doesn't understand or something's confusing, and he doesn't have the words to tell me.  Once in a while it's that he won't do something, or that the task is overwhelming, but a lot of times it's that he doesn't understand.  Today was a reminder that I need to check out a situation before I just push him.

Wednesday, May 25, 2011


 A post by LeMira

Today my son reminded me of something.  He's afraid of pain.  He has a very high tolerance for pain because of his elongated stay in the NICU as a baby, but he's also very afraid of it.  Telling him to "be brave" or "buckle up" makes him run for cover.  When he is in pain, he gets irrational.  Mainly because he's afraid of what the remedy might be.

Almost every kid I meet has a love for band-aids.  Bandages provide a much-needed placebo affect for their "owies," and they tend to disappear quickly with little ones because of that.  I remember one of the first times that I asked my son if he wanted a band-aid (hoping it would calm him down).  He was okay with it until I had to pull it off.  It was then that I realized his hypersensitivity to touch. Yes, I'd noticed it before, but it was then that it really hit me.  Ever since that time, he dreads the band-aid.  When he falls and cries, yes, it hurts, but he usually calms quickly when I tell him that he doesn't need a band-aid.  If the opposite is true, he screams.

Today's hurtful moment was not bloody, thank goodness.  I had just gotten the shampoo lathered into my hair when I heard him crying and wailing.  He came in, pointed to his eye and told me that it was hurting.  This is where the language barrier came in.  I tried to get him to tell me if he'd scratched it, poked it, fallen down, or what.  When I finally was able to get out of the shower, put on a robe, and sit and look at it, it was apparent that he had some eyelashes turned in and scratching his eye.  Yeah, that hurts!

The problem came when I told him I wanted to help him.  He would look at me and ask, "Is it going to hurt?"  It took a lot of cajoling to let him know that if he'd let me take care of it, then it wouldn't hurt anymore.  I'm happy to say that I didn't lose my temper like I've done so much in the past.  It's so hard to stay in control when your child is out of control and not listening.  The louder he gets, the louder I get.

I finally asked, "Would you rather let it hurt or let Mommy take care of it?"  I still had to get him to clasp his hands so he wouldn't push mine away (a defensive reaction), and I had to hold his head so he wouldn't jerk away.  It took a good five minutes for this process.  In the meantime, I'm wiping dripping shampoo off my face so it doesn't sting my eyes!

When I was done, the pain was gone for him, and the eyelashes released.  Thank heavens I didn't have to use the words "doctor," "medicine," or "band-aid."  Who knows what would have happened then?

Wednesday, May 11, 2011

A milestone

Tonight my Ike was playing school. It has taken us almost 7 years to get to this point. My husband and I looked at each other as he directed Mike to sit down and listen to the story he was going to read him. What started this?

We adopted a dog about a month ago and Ike has been so attentive to her needs. On the first night we had her, she started to shake and whimper and Ike was so upset that she was scared. He decided that he would read and sing to her to make her feel better. Since then I have found him sitting down reading her books several times. I can only assume that this is what brought us to this amazing imaginative play. It was spontaneous, no prompting from an adult. Needless to say his parents didn't have dry eyes. It may have taken awhile, but it was so worth the wait!

Wednesday, April 27, 2011

Biscuit is a FOOD, not a DOG!

The thing with PDD-NOS is that it is easy to forget that my child has a disability.  Then he does something and fixates on something so trivial or odd (to me, anyway) that I'm reminded that yes, he sees the world very differently than I do.

This morning we were doing homework before school.  This morning's load was more than normal because he was kept home sick the last two days.  Don't worry, I didn't overload him, it was just one more page than normal.  When it was time to do his reading, he sat on the couch and pouted for five minutes.  "I'm not going to school.  My head hurts. I'm sick."  The thing is, he's probably right, but he's not sick enough to stay home another day.  Besides, he'll only be there for 2 1/2 hours before I check him out again for a routine doctor's appointment.

Anywaaaaay, it was time to do his daily reading.  A very short book (he's only on a first grade level, so not very difficult).  The problem this morning was that the character, a dog, has the name "Biscuit."  Yesterday, when he knew he didn't have to go to school, he wasn't so grumpy and just sort of shrugged off the name, although he mentioned that "Biscuit" isn't the name of the dog, it's the name of a food.  Can you see where this is going?  Yeah, this morning, he couldn't get past the "Biscuit-is-a-food-not-a-dog" issue.  I mean, really, he couldn't get past it.  So, I couldn't get past it.  I put the book down and finished getting him ready for school.  Some days he just gets so fixated on a little thing that it gets in the way of the big things, and then we take a break.  Does that happen to anyone else?

Wednesday, March 30, 2011

Light It Up Blue

This weekend I encourage you to support autism awareness by "Lighting it Up Blue."  Tomorrow I'm going out to the store to find a blue light bulb to replace my porch light from yellow to blue.  For the month of April, our house will be blue.  Yep, we're going to be the COOL house on the block. 

And go to this website for more information.

Light It Up Blue

Monday, March 14, 2011

A House Full

Sometimes the best way to teach normal social behavior is to have a family with six children move into your house for three weeks!  Okay, so that wasn't really planned, but it's amazing to see how J.R. has changed in some ways. 

Of course, he does have his moments of being overwhelmed, but we try to keep his morning and evening routines as normal as possible.  Keeping to his school schedule helps, but last week he didn't have school for three days.  The key was to create a routine, and we sort of did.  Each night we did the same things with the kids.  Each morning, Jackson is up a lot earlier than the other kids, and that really helps.  He and I are able to focus on what he needs to do each morning to get ready. 

The best part of this is that my son loves other kids.  He wants to play with them.  He loves them, even though it's been tough to share everything, and yet I'm completely amazed at how well he's handled everything. 

Friday, February 25, 2011

Trouble comes in twos.

by Natalie (yes I am still alive, kind of)

One would think that two children from the same family, same parents, same environment, same diagnosis would respond to the same discipline and reward systems. One would think wrong. I have blogged about how wonderful the school district and service providers are for our two sons and they are, not doubt about it. But what happens when they come home? While they have made vast improvements we still seem to function at a sub par. Mike and Ike are like night and day personality wise and Spectrum wise.  Let me go into detail here.

Ike is a rule follower. We are talking the days of Moses rule follower. Do not walk more then 500 steps on Sunday, letter of the law, no exceptions! Don't get me wrong, he is a kind, sweet, sensitive boy, who enjoys other children. But if you do not follow the rules (his) or the scripts that he has been taught in school, watch out! He can turn nasty quicker than holiday shoppers at Walmart on Black Friday.This doesn't sound that outrageous. Every child goes through this phase. But he's 6 1/2. Most children are long past this stage at his age.

Now there is Mike. He is a very precocious child. Quick to laugh or try to make you laugh, goof off, and just plain get into trouble. He has very little impulse control and loves to be the center of attention. He is starting to use his wild imagination more and more and more importantly has learned how to annoy others. His lack of impulse control and attention seeking behaviors get him into a whole heep of trouble. Consequences mean nothing to him. This is my boy that laughs as I am punishing him. He responds inappropriately to situations and misses many social cues just like his brother. But what he lacks in understanding he makes up in improvisation.

Now to my problem. These two mix like oil and water. You are thinking to yourself, "well what siblings do get along"! When you have a rule follower and a free spirit cohabitating it makes for much frustration. To add insult to injury neither of them can control their reactions to each other. Talking to Ike about why Mike doesn't have to do something a certain way is like talking to a tree, it's glad your talking but wishes you talked treeish! He just doesn't understand. This is how (his) the world works, why is Mike allowed to do it differently?

Mike on the other hand loves to push Ike's buttons. He gets attention, doesn't matter that it is bad attention, it's attention. He will provoke and provoke and when you try to discipline or get him to understand why we don't poke sleeping bulls he just looks at you like, "why would you make me stop something that is so fun?!" Hence the laughing while I am punishing.

It is a never ending cycle. How do I try to have a peaceful life without turning my home into an extended school time. Do I seperate them until they are 40 so we can have a little peace? The tools the teachers give me for each of them are so time consuming I can't be doing both for each of the boys at the same time. It is always about consistency, but how can I be consistent with both at the same time? It is tiring and I find myself yelling, "I AM GOING TO MY ROOM, WHERE NO ONE WILL BOTHER ME, AND IF THEY BOTHER ME, THE WORLD WILL SHAKE WITH MY WRATH!!!!!" while they think it is funny and it sometimes stops the fits it is not the best discipline method.


or something like that.

Thursday, February 17, 2011

Teachers and Moms: what they need most

There is a huge difference between a teacher who doesn't have children and a teacher who does.
There is a difference between a teacher who has children and a teacher who has children who have struggled or still do (most parents have at least one) and are still raising them or they haven't been gone from home for too long.  There just is.  Personally, I prefer the latter, to the nth degree!

I have been a teacher without children.  I was a child who did not struggle in school academically.  Sure, I was a little socially awkward, but I had friends.  I could read social cues.  Sure, I had my disciplinary moments, but I never remember crying over homework until I was in at least middle school or high school, and even then, it was minor. 

I have a college degree in elementary education.  I feel that I got a really good education from a really reputable, good university.  I taught for three years, and by the end of the three years, I felt like I was finally starting to get a hang of it all.  I was in my element.   My abilities to teach the curriculum were improving, and my empathy for my students were growing.  It was hard to quit teaching because I felt myself improving and progressing so much, but I didn't realize that I was missing some very important qualities and skills -- the skills that are the difference in a good teacher and an excellent teacher.

Let me be honest and say that no matter how much you've worked with kids, if you are not a parent of one who has struggled, you're missing something in your teaching vision (unless you just have this skill, which I know of some who do).  You just are.  I speak from experience.  I did not know what I lacked until the past two years.

I call it "vision" because until you've lived with it and seen it every day, you don't see what parents see.  Try as you might, you don't have that empathy.  How do I know?  I didn't have it.  I wanted to have it.  I had sympathy and felt bad, but I still didn't get it.  I think back on specific children that I taught that I wish I'd had the vision then.  I wish I could feel what the parents were feeling.

J.R. has had some fabulous teachers and therapists, but I can tell you who obviously didn't get it and who did.  His current teacher GETS IT.  He is safe, secure and loved in her classroom.  I feel that he is safe, secure, and loved in her classroom.  She listens to me.  I don't have to plead my son's case very hard.  She's willing to try new things -- anything to help him succeed and feel successful.  I feel like we are a team, and this is what moms need most: teammates. Not a boss; not a know-it-all; not a professor, A TEAM.

I never feel like she is the teacher taking control, telling me what works best because she has the degree: because she is the teacher.  I KNOW I did that several times.  I never hear, "but LeMira . . ." unless it's "but he's doing so well, and I just think the world of him." 

For example, in recent weeks, I had been informed of a study* done a few years ago about the effectiveness of exercise balls replacing chairs in classrooms, especially for children with ADD, ADHD, and an ASD (autism spectrum disorder).  At the parent/teacher conference last week, I mentioned it to J.R.'s teacher, and asked how she felt about me bringing one in for him.  Not even hesitating she responded, "Absolutely.  Let's try it."  After one day of it, she wanted one for every student in her classroom.  J.R. takes the ball with him to math and to his special ed classroom.  Mrs. D. has the vision, and I love her for it.

Another teacher at my son's school who gets it is the librarian.  She and I hit it off when we discovered that her oldest son struggled with the same things that J.R. has been struggling.   Her son is twelve years older, but she has done so much.  When I vented to her about homework and trying to figure out something that works, she immediately volunteered her services.  For the last week, J.R. and I go to the library after school while she helps him with his homework.  He won't fight with her like he does with me (because I'm the mom), and he does better for her.  I help her daughter who is the same age as J.R. stay focused and answer her homework questions.  It's sort of a trade-off, although I think I'm getting a better deal (I think I need to make her some cookies or take her to lunch. . . hmm. . .).   This teacher has the vision.

I thank the Lord that He guided me to put my son in this charter school with teachers who get it.  One day, if I ever go back to be a classroom teacher, I know that my vision will be different.  I only hope that I will "get it," too.

*Here's a USA Today article written about one example:  No Chairs, Students get the "Wiggles Out" on Exercise Balls.   (If you want a copy of one of the research papers done on it, I can email it in PDF format to you, just let me know.)

Monday, February 7, 2011

On the Flip Side

by LeMira

I have spent so much time talking about the struggles that my son and I deal with lately that I realized that I haven't shared with you the amazing things he does.  This post is dedicated to my very talented son.

Did you know that my son is a walking calendar?  He remembers dates better than anyone.  He can remember what day last year we got our trampoline (April 24), and I'm certain he could remember what day of the week that was.   He'll remember your birthday better than you will.  I'll never be able to lie about my age with him around, ever.    I should just post my entire extended family birthday dates and see how quickly he can memorize it.

Did you know that my son can remember music very well?  While he struggles with singing in groups, he doesn't forget the music.  He can even make sound effects very well with his throat.  Maybe one day he'll be in an a cappella group.  He also knows the entire Pledge of Allegiance (known it since he was 3 1/2) and can sing the National Anthem all the way through.

Did you know that my kid can make just about anyone smile?  He loves to tell jokes and share stories.  He wants to be your friend, and it bothers him when he's hurt a person's feelings.

Did you know that my son has been able to count beyond one hundred for over a year and a half?  Did you know that he can tell time down to the minute, and he's only in Kindergarten/first grade?!! 

In the video below is another example of what "autism" can do.  While it can be very difficult to live and deal with, it brings some amazing abilities.  The key is to recognize and enhance them.

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.