Yesterday, I got to share my love of my child with one of my Yoga students. We spent some time talking about autism and her concerns for her grandson that he might have autism. This is a difficult conversation for many people, but she was upbeat and clearly loves her daughter and her grandson.
For me, it was nice to be able to share our story of J's diagnosis with Asperger's Syndrome, a "mild" form of autism.
J was an easy baby. He slept through the night at 4 months. He would stand in his crib for an hour after he woke up and watch the kids out the window as they got on the bus. Later, we realized that he wasn't watching the kids; he was watching the cars go by. He nursed until 7 1 /2 months when he became more interested in everything else and seemed to decide he was done with cuddling. He rolled over early, sat up early, and walked at 10 months. Developmentally, he did everything on time or early.
As he grew, he learned very quickly. At 2, he could recognize all of the capital letters of the alphabet out of order, but he wasn't interested in singing the ABCs. He knew all of his shapes including octogon and trapazoid, but he hated coloring. He thrived on a schedule, but he didn't like changes in his routine. I just thought he was one of those really smart kids who was a bit odd.
I always thought that the preschool for really smart kids was Montessori so that'e where we sent him. It was expensive. He started toward the end of October and by the beginning of December, he was saying he hated school. As a teacher and a person who has always loved school, this broke my heart, but I just kept thinking it would get better when he got used to it.
It didn't get better.
He learned a lot in Montessori! He could read cursive, sew on a button, identify all of the continents, count to 500, and add and subtract single digits, but he was miserable. We met with his teachers. It became clear that one teacher didn't like him. She tried to tell us he had bipolar disorder which can't be identified in children this young. She also claimed that he didn't know that she didn't like him!
In May, I went to observe him in school. His day started with him refusing to remove his jacket with no consequence. This seemed to set him up for trouble for the rest of the day. He seemed to need to test all of the rules since he was the only one who didn't have to follow the jacket rule. As I watched him, he pulled his hood over his head and began to crawl around on the floor pushing his head along the floor as he went. I wanted to crawl inside myself. This behavior looks like something from an insane asylum, not a preschool!
I knew he was not going back to THAT preschool. Clearly it wasn't good for him! But, all of the good preschools were already full for the next year so I signed him up for a church preschool. I had gone to a church-based preschool and I loved it so maybe this would be good for him, too!
It wasn't. It was equally awful, just in the opposite way. Instead of having rules with no consequences, this teacher had tons of rules with tons of consequences and J was in trouble from the moment he walked in the door. She didn't like the way he sat during circle time. She didn't like the way he colored. Nothing was good enough. He also knew that he would have consequences at home for getting in trouble in school so he didn't want to come home at the end of the day either. He had a different teacher aster lunch and she didn't seem to have any problems with him, but she couldn't have him in the morning. We were both unhappy, but not sure what to do.
Just before Christmas, Katie came to me. She was the director of the preschool C & A and my friends' kids attended. She had heard we were struggling to find a good fit for him. She said, "Bring him to me. I will have him ready for Kindergarten." And she did!
She was able to get him to sit near the group for circle time (not in the circle, but close to them). He had started out at the other end of the room. She made a safe place for him with clear rules and reasonable consistent consequences. She also was the first person to mention autism to us. I didn't think he had it, but I agreed to have him tested by the IU.
He did great with the testing. His IQ was very high. He did everything he was asked. His official diagnosis was "Smart & Quirky." I now know that they didn't diagnose him because of funding. Since he had an above average IQ, he wasn't there problem. But at the time, I believed them and I held on to that "diagnosis" with everything I had. This became the basis for my denial.
When we had J tested for Kindergarten, he qualified for the full-day class. This class was intended for kids who hadn't gone to preschool or weren't quite ready for Kindergarten academically. The only reason he qualified was because he refused to do half the test. The principal told us that they knew he COULD do it, but since he didn't, he technically qualified and the choice was ours. We debated for a while, but ultimately decided that a year of being the smartest kid in the class might be good for him. Plus, if he had a rough morning, he had the rest of the day to make up for it. So we signed him up.
Mrs. Ashton was a 25 year veteran teacher and she was awesome! She wasn't touchy feelie, but she was structured and fair. Mrs. Ashton brought up autism several times that year, but I always said, "He's just smart and quirky." It must have been so exasperating for her!
In the summer between Kindergarten and first grade, someone mentioned Asperger's to me. I looked it up and took several of those online quizzes. J fit every criteria! I couldn't believe it! I requested testing from the school and also contacted the autism center at Children's Hospital of Philadelphia. There was lots of waiting for both of these processes. Plus, the autism center wouldn't take him directly because he was over 6. We had to go through the genetics department to have him tested for Fragile X Syndrome first so that they could recommend us to the autism center and give us a back door in.
The testing at the autism center was amazing! In two hours, they got him to every single quirky thing he normally did a few times a month! His diagnosis was Asperger's Syndrome.
Even though we knew the likely outcome of the testing, seeing the diagnosis in writing was still hard. We had to grieve for the child we thought we had and get to know the real child. We had to accept that he might never get married or have kids, his college experience might look different than other kids, and he might not have friends or really play with other kids. We had to take responsibility for his social learning and accept that he can't learn those things incidentally. He needs actual, purposeful, repeated teaching.
We love J. We just had to give him a chance to be who he really is. Doesn't every kid deserve this anyway? Doesn't every kid deserve understanding and space to be his true self?
The diagnosis didn't change J. It changed me in so many good ways. But that's another post for another day!
Thursday, April 3, 2014
Monday, March 31, 2014
Day 48: Sickly and Fictional love
I got to spend the day with my baby (who is 10 1/2 and no longer likes to be called "my baby"). He had a fever so I kept him home from school. We got to hang out a little, which was nice. He wasn't exactly chatty, but it was nice to just be together.
Since I stayed home with him, I had to miss both of my jobs today. Being the good recovering Catholic that I am, the guilt of missing work got the better of me and I was VERY productive! I mopped the entire house (except the kids' bedrooms), I did 3 loads of laundry, stripped C's bed, and I spent about an hour writing.
The writing part was the scary part for me. Aside from the blog, I haven't been writing much. I started a book about 5 years ago about a girl with high functioning autism. I haven't worked on it in all that time. I can still picture the main character and her sister and mother. I love them. But, I haven't worked on it in so long and I don't want to mess it up. I'm happy with the parts I have, but not sure where to go with it. I only wrote two pages today, but that's something, right?
Sunday, March 30, 2014
Day 46: Truthful Love
Satya (Truthfulness) Guided Meditation
The second yama on the yogic path is Satya. Satya means truthfulness.
Find a comfortable seat.
Root down into the ground and reach your crown toward the sky. Bring your attention to your throat. Breathe into your throat. Exhale out any negative energy stored there. Imagine a glowing blue
light warming your throat. Breathe into your heart with a glowing green
light. Exhale out slowly and fully,
expelling any negativity from your heart.
Truth is stored in your throat and heart. See the two lights combine and become
stronger as they join. Maybe they will turn a bright turquoise. Continue slowly breathing while you look at the beautiful light of truth you've created.
We can practice Satya, truthfulness, during yoga class. Sometimes we try to fake a pose that we know we can’t fully do yet.
This is an example of not being truthful. To practice Satya, be honest with yourself about where you are
in your yoga journey and meet yourself there.
We also have many opportunities to practice Satya in our daily lives. There are many chances for us to
speak our truth. Have you ever committed
to something when you knew you were already too busy? Do you have trouble saying no? Overcommitment often happens when we don’t
speak our truth to ourselves or others about our commitments. Imagine yourself saying no to something
without making excuses or feeling guilty.
Imagine yourself honestly telling someone no.
Breathe into your breast bone, your solar plexus. This is the center of your personal
power. Invite in the color yellow. Feel the warmth of sunlight in your center of
power. Say to yourself, “I am
enough.” Feel your power growing as you
speak this truth.
Breathe in as you think, “I am” and exhale as you think,
“honest and truthful.” “I am…honest and truthful.”
May you speak the truth with
love as you flow through your practice today.
Day 44: Accidental Love
I put some butter on J's plate for his noodles and C pointed out that it was shaped like a heart. I love my kids so much it shows even when I'm not trying! :-)
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