Monday, March 21, 2011

Mommy Go Faster!!

Just like every other North American family we have been capitalizing on the few warm, pre-spring like days, we have had the past few weeks. After being cooped-up inside for an entire winter these days are so delicious. So, it was the first time we have seen Mia outside in quite awhile. She was not impressed. She stood inside peering out at us through the sliding glass door. Every minute or so she'd stick a foot out, let it touch the deck, then jump back in while screaming. It was as if she was saying "I know something is going on out here, I don't want to miss it, but I just can't do it people!"

She did this stick a foot out and run back in thing for about 5 minutes. Nick and I looked at her every so often, and cheered her on saying, "Come on out it is going to be alright".  Finally she made it completely out onto the deck. She looked down at us smiling and laughing. Guess she finally realized she would not vaporize or melt in the mid-day sun. Then she really hit her stride. She came down the deck steps and into the backyard!

When she made it into the backyard, I really started watching her to see what she'd do.  Last year at this time, we were just starting to realize that Mia might have autism. She would pace back and forth over the stones in the landscaping or sit and play in the dirt. She was terrified of the swing, and could only tolerate the slide. I remember watching her from inside the house, picking apart each aspect of her behavior. I tried to rationalize the autism away by telling myself she is a girl, not a rough and tumble boy like I am used to. There was no escape from her impending autism diagnosis. I tried to reject it, but very slowly had to accept it instead.

So here we are almost a year later. Mia is making progress all the time. She is becoming far less anxious and much more exploratory. She is beginning to use her language more, and is putting two and for the first time yesterday THREE words together! It happened while outside of all places. I was pulling her in her wagon when I heard it. At first it was only a whisper, and I had to stop and listen to make sure I really heard it. Then she said it again a bit louder, "Go faster Mommy".  My mouth hung open for quite awhile and I finally realized that I had come to a complete stop while I stared at her. She glanced at me and said it again, "Go faster Mommy". So man let me tell you I went fast. I can already see she is going to love those Hersheypark rides.I went in circles through our backyard speeding up and slowing down. I had such fun with her. That's the thing about autism. It teaches you to appreciate every little thing. Every word, every skill mastered, every accomplishment.

Thursday, March 10, 2011

Cancer in the rearview mirror?

Did not get much sleep last night. It's no wonder really. Today is Ethan's "diagnosaversary" and his 3 month MRI. So, in essence, today can turn out to be a day of continued celebration, and reflection on how far we have come, or it could turn out much differently.

As I write this, Ethan is under sedation having his 3 hour scan performed by some of our much beloved physicians at Hershey Medical Center. It just so happens, that on this very day 2 years ago, his brain tumor was initially discovered. Two years ago today. I remember everything about that day. I remember hearing the tremendous thud, as he hit the floor when the intracranial pressure became too much for his brain to tolerate. I remember thinking it was just an accident, he must have been climbing and fell accidentally.

Turns out it was an accident that saved my sons life. That fall led to his CAT scan that discovered the cancer. I joked to the hospital chaplain that his guardian angel, who I firmly believe he has always had, was "off duty" that day. After the brain tumor was discovered the chaplain reappeared in the waiting room. He very seriously approached me, looked me directly in the eyes and stated, "Lisa, his guardian angel was not off duty, that angel knew this accident was necessary". I still get goose bumps when I think about that moment.

I have never been very religious. I have never attended church on a regular basis. I am embarrassed to admit my children are not even baptized. But, after this whole experience, for the first time in my life, I truly felt god's presence. There is no other explanation for how beautifully Ethan has handled all his treatments, surgeries, and setbacks. Ethan is our miracle. Hope and faith are essential to families dealing with childhood caner. We hold them as close to our heart, as we do our very children.

So, the scan is today and tomorrow we meet with his oncologist to go over the results. Like all families dealing with cancer, that scanxiety can feel brutal. Good news brings relief and a return to normalcy. Unexpected news sends you "back in the ring" for yet another round. So as I pray for my own son, I also pray for those of you reading this, that are fighting a battle of your own.


Thursday, March 3, 2011

Super Sibs

What must it be like to have a sibling with autism? We, as parents, connect with each other. We discuss all  aspects of raising a child with autism. But with whom do all the siblings speak? Where can they turn? Do they even posess the ability at their young ages to know that their feelings are justified, and often quite similar to their parents?

My son's private school for children with autism is organizing an event for " Siblings and the Spectrum".  I am taking Nicholas next week. I actually am a bit nervous for him. I would like to sit in for at least part of the time, hoping to hear a snipet of how these sibs really feel. I am eager for Nicholas to have this opportunity, but also nervous about what he might say and how I can help him through it.  I want to have the perfect words ready to aid him. I want him to know how hard I know this is for him. I bear witness to how hard he has to work to have even the slightest bit of a connection to his siblings, whom both have autism.

When he does connect he and I really celebrate our victory together! Last night I was able to get Mia to say his name while she pointed to him. What an incredible grin he has when she is able to say his name, high five him, or tolerate a hug. The other day Ethan threw a ball back to him, and Nick screamed, "MOM did you SEE that?"

I think the most important thing is to help our typical children develop a bond with their disabled sibs. Also, let them know that they have a "say" in how things are handled when difficulties arise in the household dealing with autism. Autism is a huge part of our world as a parent, and we should never underestimate just how much it impacts their life as well.

I had Nick's parent teacher conference a few weeks ago. I was told that he works very hard to do his best and that he is a very compassionate friend. I remember last year when he was in preschool, his teacher told me he is always the first child to ask about a student when they are absent. She said he was always the first one on the "scene" when someone fell outside or had any minor injury in the classroom. So I have this pretty empathetic 5 year old. Cannot help but wonder if having siblings with autism has had anything to do with inspiring such a wonderful character trait. No, I do not wonder, I know that autism has played a big part.