Tuesday, August 21, 2012

Visiting Or Solange Takes a Road Trip

So last year I was given the honor of hosting Solange, the village's giant metal chicken mascot, by Rachel over at Stim City.   The deal is that our chicken gets passed on to members of our village who needed the laugh and the reminder of our connection and love for each other. Solange was inspired by the Bloggess' Beyonce who taught us to laugh and to pick our battles.

So Friday afternoon, I loaded Solange up and we headed out.

      Solange called shotgun but I thought driving up the highway with a giant metal chicken in the front seat would get me pulled over.  So it was the trunk for him. 

And we were off to visit friends. Traffic got me where we were going way later then I intended. Solange was not thrilled with his excessive time in the trunk. There was some angry clucking coming from the back of the truck. Finally we arrived at our destination. It was time for a little Knock Knock MoFo.

The front door was opened and Solange was greeted with laughter from Jess, Luau, Katie and Brooke. 

I had a wonderful weekend with all of them. We went to an autism event and I got to see one of my favorite people ever.

Jersey & Texas together again.

I collected some shells for DIVA  and Sweet Baby Girl.

 And saw some beautiful views.

And then Sunday morning I got to run with the Team Up with Autism Speaks Boston team with Luau. I showed them how we run Jersey style. Oh you want to donate?? CLICK HERE

Then our running buddy Doug who couldn't make the training run came looking for us.  He asked Luau where I was. Luau told Doug she's up a bit she's wearing.... forget it you'll know it when you see her. He found me alright.

Doug, Me & Luau

We met up with the rest of the group for a picture. 

I had a wonderful weekend with friends. It was a whirlwind but I really enjoyed it. 

I had some very interesting conversations with Katie. To see her interact with Brooke and watch her really get her sister is a beautiful thing. I am beginning to see it in my own girls with Boy Wonder. Katie and Brooke give me hope that the kind of relationship I would like my girls to have with their brother is a very real possibility. 

And then after a quick picture with Jess and Solange it was time to hit the road. My babies were on a plane and headed home.  Back to reality.

Wednesday, August 8, 2012

240 Hours or #yearoftheoxygenmask round 2

240 hours or 10 days. Boy Wonder, DIVA and Sweet Baby Girl are off with Big Daddy to California for a visit with their grandparents, aunt, uncle and cousins. I am staying home. I have finals exams and other things to take care of while they're gone.

I have plans to get to the beach, lunch with girlfriends and a weekend trip. I need a break from all of them. I admit it. I can not to do all the things I do at a breakneck speed without a break. I have earned this break. Having a child with autism and plus three kids all together so close in age is like parenting at warp speed some days. Whoever said the years are short and the days are long was so right.

I need to put the oxygen mask on for a while. I need time to reflect on the last year, make peace with some things and plan for the future. I need to do things for me so I can continue to do for my three babies.  I'll miss them but right now I miss me more. I'm tired, restless and can't focus.

So don't look for me here. I'll be enjoying the peace and quiet.

Ed. Note: To learn more about the Oxygen Mask Project, please click here. You can also follow the Oxygen Mask Project on Twitter @OxygenMaskProj. You can also visit their Facebook page at The Oxygen Mask Project.

Tuesday, August 7, 2012

Parenting & Freedom of Choice

When you judge another, 
you do not define them,
you define yourself.
~Wayne Dyer

I do not usually engage in conversations about politics, religion or other peoples parenting choices. However, if you are going to presume to tell me how to parent my children well then, hey, let's go. Jersey just took her earrings off and put her hair in a ponytail. I am not thrilled with some of you.

I parent my children in the way that is best for them at this moment in time. For Boy Wonder that means ABA, attending public school and home therapies. It means a no tolerance policy of his aggressive behaviors. This is what is working for him. He can not communicate most of his thoughts and feelings to me. I have to guess all day everyday. I am filled with self-doubt on a regular basis. I have tried bio-med therapies and therapies other than ABA. They did not work for MY SON.

I know people for who the special diets, DIR/Floortime and other alternative therapies have worked. I am thrilled for them that THEIR CHOICES worked for THEIR CHILD. I am thrilled when any parents choices work for THEIR CHILD because it means they are parenting THEIR CHILD in the way that is best for THAT CHILD.

Now I'm going to rant.....

You do not know me. You do not know my son the way I know him. I parent him to the best of my capabilities. I play to his strengths and strive to overcome his deficits. I dislike intensely his autism. I have wondered every day for nearly 7 years what he is thinking and feeling. I see my child through a thick glass wall. He is yelling to me but I have to interpret and guess and make the best choices on limited information. I am alternately loving and stern with Boy Wonder depending on the day and situation.

I work on the assumption that he understands every word I say. I never say anything negative about him in front of him. I do not tolerate anyone else doing it either.  I realized that this was not the way to go years ago. After reading Carly's Voice, I knew that it was a great freaking parenting choice.

I am preparing for two different futures for my son. One in which he can live independently which is not likely and one in which he will need to live in a group home which is the one that is currently likely. I strive to change that every day. I also on occasion pray for it too. 

So for your review, I do not judge your parenting choices of your special needs kid. You are doing what works for your child. I am doing what works for MY CHILD. I am entitled to my thoughts and feelings on Boy Wonder's particular brand of autism just as you are entitled to your thoughts and feelings on YOUR CHILD'S autism.

For the adults on the spectrum who feel their parents didn't parent them in the way they would liked to be parented, I am sorry for your pain and experiences. I value your opinions. You are the ones leading the way for my son and other children on the spectrum. I try to learn from you. Your insight offers me a wonderful perspective. I appreciate and value it. At the end of the day, I am just trying to do the right thing for my son and for me that path is not always clear.

We ask people outside our community to treat us and our children with respect. How can we have the audacity to do that when we can’t treat each others choices with respect?


Monday, August 6, 2012

Try Something Else

There is no direct map from getting from point A to point B with autism. You try things they work for awhile then they stop working. Or there's that dirty word, regression.

We made the decision a year ago to put Boy Wonder on risperdone. Putting a not quite 5 year old on an anti-psychotic was not quite the parenting decision I ever imagined I'd make. Aggressive behavior towards me, self injurious hand biting to the point his hand bore teeth marks constantly like the inside of a mouth guard, lack of focus, and waking up for the day at 3 AM and off the wall vocal stimming forced our hand. We had no choice. Every behavior plan did nothing.

So we put him on the medicine and the effect was profound. His hand no longer bore teeth marks. He didn't go after me. I was allowed to sit at the kitchen table without him getting made or pulling me off my chair. The vocal stimming was tolerable.

But then he began to pee his pants which is a side effect. The boy who was on the edge of being fully toilet trained after 5 long years of potty training. His bloodwork came back with cholesterol just below stroke level. The hand biting has returned. I've been bitten and slapped and pulled off the kitchen chair. The vocal stimming is so loud and goes on for hours. He is back to getting up at 3 AM once or twice a week. Risperdone is no longer working. We only are getting the side effects now.

So back we go to the pediatric neurologist for help because even though I was so against the medicine at first, it helped him gain so much ground. Big Daddy and I are capable of making the tough decisions for Boy Wonder but it sucks.

There is a bright beautiful intelligent little boy locked away in his autism. We get glimpses of it every day. In the big smiles. In the silly giggles. In the games we play. In the fact that he is learning to read and do math. Whatever we have to do to help him struggle less and help him reach his potential we will do it.