Just say NO (politely, of course)

Im not a hero.  Not by any means.  Dr. Bill Johnson the RVC superintendent isnt a hero and neither are the two principals who are taking a stand against high stakes testing.  My son is a hero.  Last year we decided the standardized tests were too much so I wrote a letter to his principal telling him that we were opting out.  That didnt go over so well with him.  In his defense, it probably wasnt him but the district lawyers who suggested that he threaten to call CPS on me for educational neglect if I kept my son home for the tests.  But now this same principal has signed on to support other principals in telling the State "no more tests".  Funny, ha?   Clearly this man is no hero.  Again the hero is my son and every other child out there who refuses to take the test.  I have always taught him to stand up for what he believes.  Now he has even taken to counseling other students on how to correctly opt out.  I couldn't have a prouder moment as a mother!  There will still be the doubters.  The parents who dont want to make a wave, don't want to go against the grain.  Basically the bystanders.  So to all the parents who are misguided in judging our decision I say Get the facts, do the research,  Make your own choice.  Talk to your child and Let him make a choice.  Its his education!  Im not telling him its ok to not take a test because its too hard.  I'm telling him its ok to say NO!!  Will you let your child make the choice?

New year, same wish.

With everyone talking about the new year and making resolutions, I thought I might refresh my resolutions.  They seem the same for me every year.  I want what everyone wants - to be happy.  I am forever searching for happiness but not only for me for all I know and love.  Like in the movie the Pursuit of Happiness.  I am pursuing happiness.  My favorite part of that movie has to be when Will Smith locks himself and his son in the public bathroom overnight to sleep and people are knocking on the door.  The ultimate good parent.  My heart breaks for him.  It reminds me of the night of the storm huddled together in my bed crying, praying for our safety.   
What drives you?  What drives me?  Certainly Joe drives me.  I truly believe he was put here for a reason - to motivate me to make changes.  But before Joe was given to me, I received the gift of James.  James came into the world as a surprise, not his birth but his sex.  We all thought James would be a girl.  Caroline Nora he was to be.  Shocker - such a shock that he remained in the hospital as simply baby boy dougherty for days.  Then it came to me that he should be named James, after all the wonderful James I had met.  A dear high school friend who had passed exactly one year before James' birth, my grandfather and of course my father-in-law.  I will not be surprised if James fills their shoes during his lifetime.  He shows so much promise. 
But an even bigger surprise when 3 months later I was told I was receiving a gift - another child.  I cried, oh how I cried.  I remember the nurse at my ob/gyn's office telling me "don't cry - every baby is a gift from God".  I didn't want to hear it at that time, but now I know she was right.  As much as Joe was a gift, he is a challenge, teaching us all something about love, patience, tolerance and understanding.  I often hear what a great mom I am or what a good job Im doing, but I have to give credit to my son James.  It certainly cant be easy to be the sibling of a child such as Joe.  But James does it and does it well.  He has been a role model, a supporter, tutor and sometimes even a whipping boy for Joe.  While Joe idolizes him, it must be sometimes frustrating for the typical child to live this life.  As 2013 comes in I long for the day when my boys will be independent and happy. 
2012 has shown so much growth for James.  With the passing of his grandfather and a horrible storm, he has been an amazing support system for me and his brother.  James faces challenges head on.  I pray he continues to make good choices.  He has grown up overnight and I couldn't be happier with him.  He is complex and serious yet willing to act silly with Joe to keep him happy.  They have this silly ritual every morning when they get up and eat breakfast together.   Joe turns to James and says "good morning sleepyhead" and James grunts.  All the while with a smile on his face loving every minute of his brother's special way.  I will treasure memories like that for life knowing that yeah I am doing a good job, the best job I can do with a great support system. 
Happy new year friends and supporters. 

My wish list

Its Christmas time and lists have been made and checked.  Every year a list gets put up on ourrefrigerator for everyone to write down their "wishes". Its barren this year. Not necessarily in a sad way. More like realistic. What seemed important for our children to see under the tree is no longer as important. My wish list is simple
1. I wish for my son to get into the best high school for him
2. I wish for Joe to become more independent
3. I wish for my sandy ravaged home to be rebuilt so as to rid us of that horrible memory
4. Happiness safety and love for all

Oh I could get crazy and wish for a vacation home and a trip to Italy but for now Im happy to see Joe taking chances. Its always been my wish to see my sons ride horses. Last year James rode for thefirst time and loved it. Just today I saw Joe light up while riding for ghe first time. I grew up riding horses and now know horses will be in my future. Amazing how this special child can make everything so clear. As we look forward to a new year lets listen to the children. They truly know the way to happiness.  Merry Christmas.

Looking to the future

Parents of special needs children are always planning for the future.  Whens the next cse?  When is your next test?  I need to get an updated evaluation.  Hell parents of all kids are planning for the future.  If they're not, then they should be.  But while we are busy planning for their future, what about our future?  as parents?  as adults?  I have been thinking about my future a lot of lately.  Thinking of career changes with the future in mind.  It doesn't only include financial planning.  There is that whole other side of planning for the emotional future.  We all know kids grow up, leave the nest.  They have dreams and aspirations and so do we.  We were working on Joe's health banner the other night when I realized he has big dreams.  Dreams I want to see him achieve.  One of the topics for his banner, My favorite Dream, was an easy answer for him.  "I want to play basketball at North Carolina".  AAHHH, my boy.  I of course answered it by telling him nothing would make me happier than to see him on the court at North Carolina.  So hes already planning out his future.  Now I have to work on my dreams.  What are your dreams?

Can we ever get back to "normal"?

Monday will be four weeks since Hurricane Sandy rolled into town.  And I can still smell it.  The smell of wet.  The smell of sewage.  The smell of trash.  The smell of rotten food.  The smell of baby albums trying to dry without taking the memories away with them.  Perhaps its the smell of fear that still surrounds me.  The fact that Joe can no longer sleep in his bed for fear that the rest of the shingles next to his window will blow off.  James still sleeps with a flashlight in his hand every night and carries it with him every day.  While I no longer sleep with my rosary beads in hand, the way I did that horrible night, I really dont sleep at all.  I remember that night like it was last night.  I cant shake the images and sounds of what Sandy brought into my mind.  As I shop for new appliances Im still fearful it will happen again.   I think everyone is, whether they say it or not.  How can we move on?  Perhaps to move away is the only way to move on.   Its funny when you leave our neighborhood how untouched others are by our tragedy.  And yet we are reminded of it every time we drive down our block with our neighbors most valued possessions thrown in the street for trash collection.  Another image which I just cant seem to escape.  We may not have been victims but I certainly feel victimized.  Hopefully the new year will bring back the good old days.   

Summertime, summertime

Yes summer is here.  For children with disabilities this can be both a great time and difficult time.  These kids cant turn it off becaue they are out of school.  Special needs present themselves all year round.  So while the boys are running around on the beach and having fun you never know when the "special" is gonna pop up!!!  For us summer means beach club.  I was raised at the same beach club where we now have a cabanna.  Somehow I dont remember my parents letting me run around as much as the boys do these days.  There's fishing and tubing in the bay and body surfing in the ocean.  There's wiffleball and kan jam on the sand.  Basketball and handball on the courts.  What more could these kids want?  And yet there will be moments when it will become too much for my Joe.  Some parents will understand - some will not.  Its hard keeping it in check all day with so much freedom.  No schedule, no organization, no charts.  FREEDOM.  But freedom comes with a price.  So please when you see the boy or girl having a temper tantrum or acting out, don't judge.  Melt downs, especially in 100 degree weather, are going to happen.  Stay cool - be well. 

IEP season

Yes its that time of the year again. Camp arrangements are made and paid. Now comes making the IEP for next year. the special ed world is riddled with abbreviations. So I will try not to use too many here. But I recently had a cse to go over the IEE and ATE and develop an IEP. Well anyway everything seems to be in place for next year. We as parents spend so much time and energy preparing that we sometimes lose sight of ourselves. A nice walk with a friend, a mani/pedi, even an afternoon nap would do me good at this point in the year. You see all we want as parents of special need kids is inclusion. Dont put my son in the corner, don't pull him out of class ten times per day and dont stick him in a class without his peers in a school with which he is not familiar. Special needs children need to be side by side with the typical children. We can give them assistance, accomodations and the like. All they really want is acceptance. Can you imagine the frustration of children who cant read on grade level? How much courage do you think it takes to ask for help? Our children shouldn't have to ask, repeatedly for help. Help him out. If he asks you for help, give it to him. Parents should be teaching their typical children about helping a classmate. I recently heard from another mother that she didnt want her son sitting next to my son. She didn't think it was fair for her son to have to help my son. He was there to learn. Well, so is my son. And dont start me on the fair thing. No, do not go there. Fair? Ask Joe what's fair. Hell I will tell you life is not fair. But we deal with it. Sometimes the best way to deal with it is to let it play out as it will. Sure we can add our input. We can make suggestions. But I believe in the long run, fate will take its course and the cream will rise to the top. Heres to hoping all of you experience the joy of watching the cream rise to the top!!!