Tuesday, September 28, 2010

Decoding Autism

 Last night I (Natalie) found the information that PBS in New Jersey was doing a documentary on Autism and I knew I needed to watch it. LeMira and I simultaneously watched it together. We IM'd back and forth the things we found interesting. There were a few things that I took away from it that I wanted to share. I am sure that LeMira might have a few more that she will want to share.

1. There was nothing I could have done to prevent it or detect it before birth.
2. I am not alone in this. There are so many other parents out there struggling with the same things.
3. Research is being done in order to give me more answers.
4. I am already doing the best thing that can be done, being an advocate for my children.

So if you have an hour free, please watch this video. We aren't anywhere close to understanding Autism but with more and more information and Research it is only a matter of time!

Decoding Autism

Sunday, September 26, 2010

The Results Are In

On Thursday, as I (LeMira) drove home from the appointment with the psychologist, I had many thoughts.  Above all, this thought pelted me:  Why did I go?  Here are the answers I gathered.

1.  We have a diagnosis and an explanation.  Yes, my child has PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified).  It turns out that my son's delays are NOT due to prematurity.  In fact, I was told to throw that excuse out.  It has NOTHING to do with my son's issue.  PDD-NOS is, in fact, hereditary.  J.R. would have had it even if he hadn't been premature.  I can even tell you that it comes from my husband's line. 

2.  I was validated.  All of the little tactics and ideas I've had that have popped into my head to try were right.  Everything I've been doing to try to help my child are just what he's needed.  I'm not too involved in my child's life; I'm not a bad mom.  My instincts were right, and I was not grasping at straws.  To be honest, when I was telling the doctor why I felt my child needed to be tested, he looked at me without expression. (I swear psychologists must have to be able to do that in order to get their degrees.) His expression encouraged me to grasp at everything and anything that I saw in my child that seemed quirky or odd.   In the end, he told me that all of my concerns were exactly what PDD-NOS is.

3.  I have some strategies that I can use.  I can't remember them all, and that's why the psychologist will be writing up a report with recommendations on it of what we can do.

4.  I have confidence in my abilities as a mother and knowing my child.  Yes, there are days that I feel completely inadequate to be my child's mother, but I now feel some power and confidence in being my child's best advocate.

I can not tell you the relief I felt when the doctor officially gave the diagnosis.  I physically felt a burden lift off my shoulders.  This is something I can accept, something I can work with.  I have answers and now I have a definite direction.

Thursday, September 23, 2010

Today's Fear

Today's the day.   Today my little guy sees the child psychologist for his multi-disciplinary assessment.  Basically, J.R. is being tested for anything and everything (ADD, ADHD, Autism, etc.).  I admit, I'm nervous, scared, anxious, and worried. What if the doctor doesn't see what I'm seeing?  What if I forget to tell him something?  What if the tests come back negative?

Okay, so I'm sure it's not going to be black or white/positive or negative, I mean, we're seeing a psychologist; but what if there aren't any "abnormalities" other than just the tentative diagnosis* (Cerebral Palsy) the neurologist gave us a month ago?  A million questions are running circles in my head, and you can imagine that for someone who gets motion sickness like me, that it's quite sickening.  Here are just a few that keep making laps around my brain:

If J.R.'s behaviors are normal, does that mean I'm just too impatient with him?
Is it just my fault?
Will he not get the help he needs in school?

Is there nothing I can do?

Sure, some of these sound selfish, but I don't mean them to be.  I'm really worried that what I'm doing as a parent is HURTING my child, enabling him to continue these poor behaviors.   Seriously, my biggest fear today is not that J.R. will throw a fit, get angry, or do nothing; my biggest fear is that the doctor will tell me that it was a waste of time and that there is nothing we can do to help my child. 

*It's a tentative diagnosis because it will only be definite if we decide to give J.R. an MRI to determine if there's brain damage.  We're still deciding what to do with that one.

Monday, September 6, 2010


Do you ever just throw your hands up in the air and say "I give up!"? I did that yesterday at church after my youngest was brought to me twice, the second time for running out of the building away from the sweet pregnant lady that was in-charge of him. And this is supposedly my mild child! As she ran after him she said he was laughing and smiling and thought it was a game. Never mind that our church is on a very busy street or that this woman was in no condition to chase after him. All I could do was look at her as she was apologizing and say "It's ok, this is nothing new. I'm sorry."

So I have two dilemma's here. Both have nothing to do with having a special needs child, except that maybe I am confronted with these situations on a more regular basis than other mothers. First, how do you stay motivated to discipline your child when you feel like you are really punishing yourself?

I have been given so much advice, as I am sure most mothers are, on the "how tos" and "what withs" of discipline. But rarely have I been given advice on how to survive said "how tos" and "what withs". "Take away his favorite toy", "Take away the Tv, video games, bicycle, ......", "Put him in time out, on his bed, in his room.....". Unfortunately all I hear is "Take away something that will keep him occupied", "Take away your peaceful productive time", "Stand behind him in time out, by his bed, outside of his room". Now I admit no one ever said disciplining is easy, but what if your child doesn't learn after three or four times. What if this becomes your whole day, week, life? I am sounding mellow dramatic I admit. But after yesterday and realizing that I am spending most of my life saying "Don't, Stop, Come back here, Don't smile at me when I am punishing you, Go to your Room, Put your nose on the wall,......", I can't help but think I must either, A. be doing something wrong, or B. I just haven't got something right. Advice is always welcome! (This doesn't even delve into all of the reward systems that we have set up and then watched fail miserably!)

My second Dilemma has to do with my youngest child. How do you discipline a child who thinks it's all a game? Micah is so incredibly different than Isaac which, from what I can tell is exactly how it is supposed to be. Who knew two kids with the exact same diagnosis, same parents, and same fondness for trains, could be so different to discipline. I remember my father talking about how it was night and day disciplining my sister and me. I thought "well of course, I was obviously better!"  The easy answer to that is no, I just had easier motivators/reinforcements than my sister did.

Micah is a breed of his own. Trying to figure out what is going to motivate him enough each day is like solving the Sunday paper's crossword puzzle. Half the time he laughs at me when I try to sternly reprimand him. Which leads me to get more angry (who wants to be laughed at while you are trying to impart right and wrong?) It all devolves to one big crying, spanking mess very quickly. Can you figure out which one of us cries first?

I think this is a common mom thing. You don't have to have any specific type of child to feel the pressures of teaching your child right from wrong. But when you spend most of the day trying not to throw a bigger tantrum than your child, disciplining with love and logic seems like something that might be possible on Mars. So, great and wonderfully wise mothers out there..... How do you do it? What are your tricks? What keeps you sane and can you sell it to me?