My Son Has Autism

Note:  I want to apologize for being such a blog slacker.  The main issue has been that Carson damaged my laptop charger, and since it is the only computer I currently have access to, it is a very daunting task to get it charged up enough to write.  I soon hope to have a new charger and get back to more frequent posting.  Thank you for your patience!

Yes, my son Carson has autism.  You already know that?  Of course you do!  I have already written about it many times!  Why, then, you ask, did I write a blog post with this title?  As time marches on, I delve deeper and deeper into the experience of raising a child with autism.  It has almost been 4 months since diagnosis, so I am still fairly new to all the therapies and information out there.  Forgive me for sounding like such a newbie, but it is a perspective I feel should be shared with others who may be going through the same.  Some realities are only now beginning to hit me.  One of those real moments happened a week or two ago, and it slapped me in the face.  Hard.

I don't like excuses.  Everyone uses them, myself included, but I don't like to, and I don't like when other people do.  I don't like feeling like we need special treatment, but the reality is, sometimes it is needed.  I rarely have issues with Carson when we are out in public.  Usually any tantrums or defiant acts appear to the bystander, upon brief encounter, as typical for a boy his age.  However, Carson is getting bigger.  With his aging appearance comes the expectation of more mature behavior, but because of his difficulties the gap is only widening.  It is becoming more apparent that there is something different about Carson.  I have dreaded this day.

I have read about and been told by some other moms that they keep cards to hand out in public in case they have any problems.  These cards explain a bit about autism and are intended to inform the "well-meaning" strangers who may decide one day to comment about a behavior.  I have read it so many times and wondered if it would ever happen to me.  I never dreamed that I would be one of those people to carry the cards.  I'd never seen one or been given one (except for a fellow mom who showed me hers), but I also don't go up to people I don't know and comment on their parenting skills.  Now I am actually wondering if I should be a card-carrier.  I am beginning to learn that saying "My son has autism" too many times can get pretty old.

I know I said it a few times this particular day, and usually it is only if we run into someone I know as maybe a casual acquaintance, say, through work, or someone I may have gone to school with and haven't seen in a while.  Sometimes I say it when someone asks Carson a question, or if he happens to scream (which fortunately is rare) when someone approaches us and tries to talk.  But on this horrible day of days, it wasn't one of those instances that got to me.  It was something a little simpler.

Carson has a love for opening and closing doors.  If you have ever seen us at Walmart, you probably know this already.  He loves to open and close the freezer or cooler doors.  When he sits in the buggy, it is easy to limit how many times he does this.  Now that he is getting bigger and wants to walk or push the buggy, I am having to learn other ways to limit this behavior without causing a big scene.  Most of the time, so far, I feel like a failure.  Many times my attempts to stop him have ended with a mild screaming fit and Carson falling to his knees on the floor, staying there and refusing to move on with me.  I tried to drag him once, but figured that was a worse idea, so I just wait for him to get over it.  He just sits there and looks at me, which is better than screaming, but still draws a few stares.  But the incident didn't happen at Walmart.  I never have a problem there, so far, with anyone saying something to my face or to Carson.  No, this day we had gone to a small-town store to look for something a little out of the ordinary for Carson's diet.  Unfortunately, this small store had lots of coolers, and only small buggies, too small to restrain Carson.  I let him wander while I shopped, since the store was small enough I could keep my eye on him.  I tried several times to stop him from opening and closing the cooler doors, but to no avail.  And then it happened.  The man working in the store, no doubt probably the manager, walked up to Carson and told him (in a nice tone) "These aren't for playing with."  Ok, I know it doesn't sound like a big deal...but my blood BOILED.  SO many thoughts have gone through my head since that moment.  I wanted to lose my mind!

First of all, I understand that Carson should not open and close the doors so much.  It does cause the compressors to run more, which costs money in electricity.  He was not being rough, so no worries about breaking anything.  And this man has every right to take care of his store, his property.  But first I worried that he must think I'm not watching my child, which equals bad parenting.  I was watching him, and I would much rather him be doing that than getting into things, breaking things, or trying to run out the door.  He was contained, he was safe, and he was occupied.  There is no way this man understood that.  Secondly, I don't get onto other people's children, ever, unless I know them very well and they are doing something that could be harmful or that I know they are not allowed to do.  It was the first time I ever experienced a complete stranger correcting my child without my permission, and I didn't like it.  And I know it won't be the last time.  Lastly, I didn't know how to respond.  I didn't know what to do after that.  I was so angry and I didn't want to take my anger out on anyone, and I was very embarrassed at the same time.  How was I supposed to handle this situation?  I wasn't finished looking for what I needed, and I was fighting the urge to put my stuff down and leave right then out of anger, but I was also trying not to blame this man because he didn't know.  And I honestly don't know if what he did was right or wrong.  I can see it both ways now.  So I did the only thing I knew to do.  I got Carson and tried to keep him with me, which was a huge power struggle.  I ended up having to carry him myself, and since he weighs over 40 pounds, there was no way I could do that for long.  So I gave up and went to check out with what I had already.  But the man was busy helping someone else, so the girl checked me out.  Lucky for him (and me!).  I thought about it, because I didn't want to sound like I was making excuses, but right before I walked out I finally decided to tell the girl (with the man standing right behind her with a customer) to tell the man that I was sorry if that bothered him, but my son has autism and I don't know how to stop him from doing that yet.  And I walked out.  She was really nice and smiled and said something nice I don't remember, but I was red as a beet.  I was so glad to get out of there, and thought, I may never go in that place again.  We will see.

I know to some of you it sounds really simple and maybe a little silly to be so upset about it, but I was.  It still bothers me a little now.  It was a wake-up call to let me know I need to work harder to learn what I am doing with Carson.  It was motivation.  I talked to one of the therapists about it this week, and she gave me a few ideas, most I've already tried.  But a good limitation, like telling him he can only do this so many times and then move on, might work.  I did try that already, but I think I have a better strategy now.  The point is, I need to step it up a notch and start practicing all that I am learning.

The reason I shared this story was because I know there are other people out there who can relate, and there are people out there who need to see things from my perspective.  This man didn't know
Carson has autism, or that this is one of his challenges, or that I have been trying to work on this behavior.  How many times do we wish that other people only knew what was going on?  We only see a snapshot of people we meet in stores or restaurants, we can't know their whole life story or understand what is going on within them at that given moment.  The lady in her pajamas with rollers in her hair may have been just getting ready for bed and had to make an emergency run for baby diapers or something.  The baby that won't stop screaming may have just not had a nap, but it was the only time they could go grocery shopping and there was no one available to watch the baby.  Or the little boy running around that won't listen to his mommy, may just have autism and doesn't know what she is saying, but she has to take him anyway because he needs to learn how to handle it.

I don't want special treatment, I don't want to make excuses, I just want everyone in the world to take a moment and put themselves in other people's shoes before they make judgments.  That's the Jesus in me.  Now I'm thinking about being a card-carrier.  What do you think?

Breakfast...It's What's For Dinner

Carson has recently developed a love for breakfast foods.  After eating mostly Chocolate Cheerios, bananas, and the occasional lopro pancakes, we finally have a few more things he will eat.  I am seeing some growth here!  I love it when we can break the monotony and expand our horizons a bit.  What a breakthrough! 

Several months ago, or more, I ordered 2 sample kits from Country Sunrise.  I highly recommend anyone out there with a PKU'er to try these products!  They are the neatest thing I have ever seen!  Carson fell in love with the Universal Egg Mix.  It is just a white powder until you add oil, then water, and voila!  It turns yellow!  You mix it up and pour it in a skillet and scramble it, and it looks just like scrambled eggs.  It also has a great flavor.  The most important thing here...Carson loves it!  I admit I am as in love with making it for him.  I also tried the Hot Dog Mix, which is equally neat and pretty yummy, but sadly, he wouldn't eat it this time.  At first he did eat one I made.  I will have to keep trying.  I can't wait to try more of the samples!

With Carson's tendency to be extremely habitual and picky, I was having a hard time filling up his tummy and meeting his phe requirements.  He was hitting a growth spurt and eating everything he could and asking for more.  Because he limited his wants to only a few certain foods, I knew I had to do something and fast.  He needed to eat more lopro foods.  His current menu includes several, but he needs more variety to fill him up.  He would eat Cambrooke's Mini Pizza Pockets, lopro bread and cheese or Biscoff spread, and lopro rolls, pasta, and rice.  I also use Cambrooke's MixQuick to make pancakes and chocolate chip cookies.

The addition of the egg mix has been a lifesaver for us.  For example, today Carson needs to do a washout because his level got a tiny bit high (I assume because of that day we ate Mexican food and tater tots in the same day!  lol).  His menu is much easier to plan today for this, because I don't feel so bad about not giving him his Cheerios.  He doesn't eat them as much now anyway!  Today he will have pancakes, eggs, toast, a sandwich or pizza pockets, applesauce, cookies, pasta, and rolls.  That's a much better variety, don't you think?  I am so excited!  Now, if we could just work some more vegetables into that diet...

To order Country Sunrise samples, visit www.pkuperspectives.com.  Look for the Country Sunrise logo and find Samplers.  They have a couple of different ones; I would suggest getting both the meat alternatives and the one that includes the eggs mix.  They are very affordable and it gives you a chance to try them before you spend a lot of money.  Good luck and happy cooking!