If I could change one thing for my daughter, it wouldn’t be what you would expect. We can live with her Angelman Syndrome and all it entails, but what is hard to live without is Jess not having a bevy of friends.
Through most of school, Jess always had a best friend, however, friendships only lasted as long as they were in the same class. My Jess was a flower child. She was the one that couldn’t sit still or pay attention, yet she was never fooled when the Moms hid behind a screen in the classroom. Jess being non-verbal was the deal breaker. As the gap became wider, her friendships. waned. Who knew there were cliques in the special needs community? Aren’t we all suppose to be supportive of each other?
Jess’s first buddy Truman* had been a late talker who had a physical disability. The Mom wanted him to fit in with the typical kids. Even though our children spent time together, it was hurtful when he had a birthday party and did not invite Jess because “well, you know, they aren’t in the same class…blah, blah, blah”. Yet, at the same time, I was her go-to friend in a crisis. Her truth was, what would the other kids think of her child if in the presence of mine?
When we moved, Jess became fast friends with Debbie*. They were thick as thieves. One time they were in gym class, the teacher told me that Jess didn’t want to do the activity, so she grabbed Debbie’s hand and they bolted out the door like Thelma and Louise. When Debbie became more verbal and was starting pre-writing, she was moved to a more “advanced” class and I never heard from her mom again. I found this so confusing, especially since the Mom told me on more than one occasion how Jess understood so much more than her daughter. This is when the realization hit me that school knows how to help a compliant child, but they have no clue what to do with the kid they don’t understand, much less know how to motivate like Jess. She figured out the game and she didn’t want to constantly prove what she knew.
There was a third girl Sadie* who was part of this social circle. When Debbie moved up, there was a vacancy at the table. Sadie and Jess became better friends. (Each of these girls probably could only handle to be with one friend at a time. When there are three friends, one is always slightly outside). I made attempts to get the girls together after school, but parents were always too busy. Jess’s last year of traditional school, we moved her to another program. I still get huge pangs of sadness when I think of Sadie. I had been told that she stood at the door, every morning, for months, MONTHS, waiting for Jess to return to school. Even knowing this, the parent’s never made the time. I guess they had their own supports in place and they didn’t feel their daughter needed Jess. It was obvious their daughter missed her. Breaks my heart that they both got shortchanged. Jess had other friends too, but these examples make the point.
Of course, all of our friends had typical children. They did invite Jess to the birthday parties and bat mitzvahs. As the years went on, Jess’s medical issues made it difficult to partake. Besides, it was just too hard to be at a party where everyone knew each other and could engage and Jess didn’t know anyone well enough to connect with. It really just takes one person to say “come join us”, however, that doesn’t happen too often. At least, it doesn’t happen until they have been around Jess long enough to see how much more there is to her than meets the eye. As you read this, please don’t misinterpret. This is not a woe is me story. This is just the way it was story. Honestly, if my social skills were better, I’m sure life would have been different. These parents needed to take the lead from me because the special needs world was foreign to them, but I was too overwhelmed to show them the way.
Thank God Jess touched the hearts of some of her teachers. This may be the exception to the rule; in order to understand an experience, you have to live it. The teachers that had the biggest impact on Jess were the ones that did not have children (yet). They invited Jess to their weddings and they are still in Jess’s life. Not only did they keep the spark alive in Jess, but they kept it going in me too.
We now have a few communities that we belong to. The online community has been informative, supportive and refreshing. Communication is truly the key that makes everything possible. Recently, a friend from church told me that she had been reading my blog. Up until now, I’d been relating to the movie Julie & Julia when the blogger asked: “is anyone out there?”. My hope is that as I share, I hear from others that may be on this similar journey, and I have. My heart feels their challenges and soars upon hearing their successes.
I am especially grateful to all my close friends. Their daughters make Jess feel valued and special. They see Jess for the sassy, sweet, strong young lady she is becoming. They accept her for who she is, as she is. Honestly, I don’t know who gets more excited about an invite, me or Jess!
As for having that one special friend, we are still waiting. This is not something a parent can make happen. All I can do is hope and pray that someday it will. The one thing this path has shown us is patience. All good things in good time.
*names have been changed
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