Saturday, November 27, 2010

Just a day like any other....

I used to cringe when I first heard that term "special needs" to describe one of my children.  But I knew that that stigma would be one I would have to get over.  If I stayed stuck in self-pity, who was going to benefit?!?!  I accepted that we have 2 with definite diagnosis and 2 with possible diagnosis, and each one unique and different in their own way.  Now the next stage is living with it or daily learning to live with constantly changing situations.

People who do not have kids with special needs just do not understand the stress that the parents that do have kids with special needs undergo.  They see us fight with our kids in the store and think what ill-behaved brats they have...don't they discipline them!!!  I'm sure I sound like the meanest mom in the world as I am threatening to pull privileges to do everything but breathe...but sometimes that is all I have the ability to do in hopes they learn that....
A) It is not appropriate behavior and they need to
B) If they don't stop they will lose a beloved privilege such as playing their DS game system.

Do you know that most parents who have kids with special needs do not even understand what other parents of kids with special needs undergo.  There are so many special issues that children are faced with!  Each family situation is different.  I can say I empathize, because I may know slightly what a person who has a child with cerebal palsey is undergoing, but I do not completely understand because I am living in a different situation.  I can understand their sleepless nights and worry about what the future is going to bring.

Daily life is a struggle.  I feel like a juggling clown that is unable to actually see what I am juggling.  The next thing falling down at me could be a feather or a brick.  Most days I do not know what will set a child off into a meltdown or an issue.  And most days I stand a little shocked at what little issue can be the source of a problem.  There are other situations that I can foresee will cause a meltdown and try to curb the situation, especially in public.  Our oldest is at the stage where he doesn't understand that the boys his age are laughing at him, not with him when he makes a joke. Those are the days where I would love to drag those boys by the ears to their parents and say "Are you teaching these kids respect?!?!  I don't allow him to laugh at boys with unique needs.  How would your boy feel if he was being laughed at?!?!  I am not proud of the fact I yelled at a mom because she and her daughter were laughing Joey as he was having a meltdown.  I was literally dragging him out of the store, being watched by employees as if I was kidnapping him, and they are pointing at us and laughing.  What kind of person has the ability to participate in this kind of behavior with their child?!?!

I ask myself everyday:

Am I the enabler because I allow Brayden to have his bowl of vanilla ice cream with chocolate syrup everyday....because he feels he has to have that or his day isn't complete!?!  Am I the enabler because I allow Joey to repeat things two times because I know he thinks he has to repeat things two times in a row!?!  Am I the enabler because I allow Lydia to wear skirts and sleeveless tops in the house because I can tell when she wakes up whether or not she is going to grouch about things touching her arms!?!?  Can you be an enabler to a two year old who can only stand eating mushy foods right now and allowing her to eat chicken noodle soup three meals a day because if you don't....well she does have a molar coming in so I can see her need for mushy foods.  

Daily my hubby and I both lose sleep due to constant erratic sleep patterns from 3 of our 4 kids.  Lydia has started sleep wandering and wanders the house sometimes.  (We have been through this with Joey now for a few years.)  Joey feels only the need for 2-3 hours sleep most days.  Wow....that means long, long days for all of us!  Homeschooling is perfect for these situations because I can control and read his mental state to know whether or he is able to even take in information.

That brings us to this morning.....

We played a board game with the boys last night, and took away the DS early (like recommended).  So as we fought last night to get all down in bed, well the hardest was Joey (as usual), I fell asleep watching TV around 11.  I prayed for a good night sleep....ha, ha, ha!  Those sleep experts haven't been to our house!  I woke up several times overnight to Joey wandering around.  Then at 4:30 I was woke by him trying to quietly play on a computer in the school room and Caty sleeping on my legs.  I mean literally sleeping on my legs!  Joey was in the stages of a manic episode.  He's only 10, there's no sleep drug that is safe.  And what do you need during a manic episode, but sleep!  So it will be a long, long day.  I am praying for patience, endurance and anything else that will get me through this day.

For anyone who doesn't know what a manic episode is, let's break it down:

Mania:The fast ideas start coming too fast and there are far too many ... overwhelming confusion replaces clarity ... you stop keeping up with it … memory goes. Infectious humor ceases to amuse. Your friends become frightened ... everything is now against the grain ... you are irritable, angry, frightened, uncontrollable, and trapped.

  • Excessive happiness, hopefulness, and excitement

  • Sudden changes from being joyful to being irritable, angry, and hostile

  • Restlessness, increased energy, and less need for sleep

  • Rapid talk, talkativeness

  • Distractibility

  • Racing thoughts

  • Show poor judgment

  • (

    I'll stop there because the rest of the list is too scary to think about with a 10 year old!!  The doctor wants to wait for diagnosis, but we know its coming.  So I am prepared.  There's really nothing else than what we are doing right now.

    I'll pull out his regular medicine in about 30 minutes, because if he gets it too early the benefits of it will wear off too soon.

    We post alot of fun stuff that we do everyday because I try to make every school lesson fun and interactive for them in hopes it will stick with them more.  But in all honesty, today is going to be a true day in our house...chaos, yelling, screaming, hyperactivity to the extreme.  There will be laughter and tears (probably from adults too...).....


    1. I SO needed to find your post this morning! I saw your blog on the workboxes yahoo group.
      I don't think many people know what it is like to cry yourself to sleep, worrying about whether or not your child will live on their own, let alone go to college, get married, and have a family.
      Some days it's just too much. I'm still learning to recognize those days and just throw in the towel before I explode. :)

    2. I understand what your both saying, its so hard some days just to hold your tongue... and others they are simply delightful..... God knows what he is doing and so I just go with his plan ;)