The Road Not Chosen

Dual Identities

Evan loves clothes. I mean, he really, really loves clothes. He likes talking about what he's going to wear, thinking about what he's going to wear, talking about what you are going to wear. It's kind of an obsession. He has really good taste (not sure where that came from) so we don't really have to worry about it too much. Our church school has a pretty relaxed dress code. Basically the kids can wear anything as long as it is modest and isn't t-shirts or jeans. So here's the rub for our son: he loves t-shirts. In the past he has had a problem with wearing a t-shirt (not undershirt) beneath a shirt that buttons down the front. Normally not a problem, until you see him walking down the hall with his shirt unbuttoned so everyone can see the cool t-shirt he is wearing. Can anyone say dress code violation?

We thought we had this problem solved and that Evan had moved past that stage. When Evan & I got home yesterday from school he said, "Mom, I'm sorry. Two clothes on today." I was a bit confused. I asked him to clarify and he unbuttoned his shirt to show me a t-shirt and then showed me that under his long pants, he had a pair of cargo shorts! My first thought was "Wow, those long pants must be bigger on him than I thought!" I tried really hard not to laugh & put on my stern mommy face. "Evan, why did you wear 2 sets of clothes?" His reply? "At public school they wear shorts. I change at Life Skills today." I knew that Mrs. Meyers would not have let him change clothes, so I guess that was his plan but it was thwarted & his guilty conscience got the better of him.

I suddenly saw a connection with something Evan had been talking about for a week. He kept saying he wanted to dress like a "cool dude" for Halloween. Then he would go put on his sunglasses, slick his hair back, and put on a necklace a friend had given him. Harold & I didn't get the connection. His appearance wasn't altered really. It certainly wasn't a costume. Then yesterday afternoon I realized he wanted to be, well,  considered "cool" by the kids at the public high school. 

We talked about how being cool isn't an outward thing. It's who you are on the inside that really makes you cool. Harold talked to Evan about how it's not good to act a certain way at one school and act different at the other. He needed to be himself wherever he was and whoever he was with. We assured him that he was already tremendously cool!

I'm not sure how much of this he absorbed. It was good to know that some parenting issues are the same whether your child has a disability or not. All teenagers want to be cool and wear what everyone else is wearing. They all try to sneak something by their folks. They all want to be accepted. It was kind of nice to just deal with a normal teenage issue for once. Now how Evan walked around with 2 sets of pants on all day & wasn't  horribly uncomfortable, I will never understand. But he really is about the coolest guy I know!

Knowledge Is Power

Tomorrow afternoon Harold and Evan's Spec. Ed. teacher, Patsy, will talk to Evan's high school classmates about Down Syndrome. (I plan to sit in the back of the class & observe.) It will be a relatively small group of kids, about 30 or so, but is an exciting chance to educate and perhaps correct some mis-perceptions. During this time, Evan will be probably going out to get ice cream with his good friend, Pastor Roger. 

Some of Evan's classmates have know him most of their lives, others haven't know him long at all. Harold gave all of them a hand-out taken from the NADS article "If People With Down Syndrome Ruled The World."  This article will be a great "ice breaker" & will hopefully provoke some discussion.

We have wanted to do something like this for a couple of years, but the timing didn't seem quite right. Also, Harold is the principal of the school. We really wanted to avoid the perception that he might be telling kids "You better be nice to my son because I'm the principal!" However, our high school students are all pretty close now, and I think there is enough of a bond of friendship that will help them to hear Harold as a parent, and not just as the principal.

One of the advantages of having Evan in a school run by our church is that the kids are together just not for classes, but for youth group activities, family get-together's, sports, etc. They all know each other extremely well! Our goal is that in explaining more about Down's, it will help these kids know how to be better friends, not just with Evan, but with other people who they may look at as "different". And a little knowledge can spread pretty far!

Your Emergency Becomes Mine

I’m home sick today. The side of my neck is swollen & sore. I’m tucked into the couch, watching the Today Show, when Harold calls. “Evan has to have his enrollment papers in today. It’s District Count day,” he tells me. Great. My plan was to do the paperwork tomorrow, when I dropped Evan off for speech. We debate about who will do this task. I decide to go as Harold has meetings booked all day & if he has to rearrange his schedule, that means someone else must do the same.

Decorating Is Everything

Since we moved Evan into his new room, he has been wanting to update his decor. He's gone through several "themes" in his relatively short lifetime:

1. Infant - bright, bold colors.
2. Toddler - Elementary - Sesame Street/Toy Story/Lion King
3. 6th - 8th Grade - NASCAR (we are not a NASCAR family I might add!)
4. High School (so far) - Geometric prints

His newest choice? Asian-influenced! We were looking through a Brylane Home catalog when we came across this set. Ev fell in love with it. "Yeah, man! Japanese! This is it!" he exclaimed happily. We looked at several other options but he really wanted his original choice. So we'll order the comforter set & hit the grandparents up for donations for the rug. (I drew the line at the hand-painted TV cabinet!)

We have always had a policy that Evan could have his room decorated however he liked. He has always had very specific taste in clothes, decorations, music, etc. This is a normal and wonderful thing so we always try to defer to his taste when possible. Always the snappy dresser, I think he would dress in Tommy Hilfiger & Ralph Lauren if we had the money!

One of the great joys of being a parent is watching our son's personality & tastes develop. When he was a baby, I often wondered if he would be like the (few) people with Down's that I had seen: sloppy dressers, bad haircuts, dull. Now I realize that those people were the product of an old way of thinking about those with mental disabilities. It was the line of thought that said there was no point in educating, mentally stimulating, or exposing them to much of the outside world. This would lead anyone to a general, overall dullness of course!

I am glad that we have had the resources & desire to expose Evan to things like art, music, literature, other cultures, nature, God, travel, love, acceptance, and all the other things that help make for an educated and interesting human being. This is a kid who loves sushi & air travel, for Pete's sake! He has, and continues, to surprise & delight us with the person he is becoming.

So let the decorating commence!

Today's Conversation

As Evan & I were driving to school today we went through our usual morning conversation: what day of the week it was, what were we going to do tonight (which Evan will ask several times a day, social guy he is!), what Dad was going to do today. "Life Skills today?" Evan asked. "Yes," I replied. "I know the way," he said very seriously. "You mean how to get to the high school?" "No, to class. I know the way."

My mommy radar perked up. This was more than just letting me know he knew where the classroom was. I remembered last Thursday when I took him to Life Skills. We pulled up in front of the public high school & I was just about out of the car when Evan told me he knew the way. "Well, I'll just walk you in to make sure Mrs. Fitzgerald is there," I had said. Now the subject was coming up again. Decision time.

Here is our thought process in decision times like this: 1) his desire for independence is good, 2) his sense of direction is very good (Evan can tell anyone how to get to our house, the church, Wal-Mart) but 3) his knowledge of what to do if the teacher is not there or if he makes a wrong turn is very poor. This is where he gets bogged down. He really struggles with knowing what to do in unexpected situations. He still doesn't know what to do if he gets separated from us at the store. Somehow it just has never sunk in, even though he has been lost 3 or 4 times. (I swear I watch him like a hawk, but he can vanish in a second!)

So we will concoct a plan to enable Evan to walk from the high school parking lot to his Life Skills classroom and to the Speech Therapy room. We will work out a safety net plan in case the teacher is not in the class. And I will be nervous as heck until he really gets the routine down pat. I am glad he is pushing me, gently, to let him navigate these things on his own. His desire for this bit of independence will hopefully help him learn the importance of his "what to do if..." lessons.

This incident also reminds me of God, who pushes me gently, with a quiet insistence. When I am afraid or reluctant to make a certain decision, He speaks to me in the voice of my son. "I know the way,' He says, "Just follow me. It will be o.k."

Enter The Judge

We are about to embark on a new leg of our journey with Evan. He will turn 18 in January, which means he will legally be an adult. Privacy laws being what they are, we have decided we need to seek some form of legal guardianship of him. So I made a call I hated today. I called a lawyer.

Please understand that I have spent most of my life avoiding contact with lawyers. They are expensive and speak a foreign language. If you ask them to translate that language, they charge you money. It’s a vicious circle! The gentleman I called will hopefully have some compassion on us when it comes to fees. He has a 20-something son who has cerebral palsy, so he is at least familiar on a personal level with the road we have to go down. This guy is also very nice. He was the legal council for the university I used to work for & he and I had a decent working relationship. We will meet with him next month to discuss all the grisly particulars: full guardianship, partial guardianship, financial guardianship. It’s a virtual Chinese menu full of choices to make, none of which I find particularly appetizing.

I am the type of person who always wanted to get A’s on my tests. (I’m sure my parents will be shocked to hear this!) But, really, I was always disappointed when I didn’t get everything right. The thought of having to make such a big decision with long-lasting ramifications for Evan is very daunting. We will pray a lot and trust that we will know which option to choose when it is presented to us.

I have mentioned before that when you have a child with special needs, grief is something that pops its ugly head up from time to time. Small things can trigger it as can big life events. Yeah, this is one of those big life events. Yup. It is. During times like this, when I realize that we will actually have to stand before a judge & say, “Yes, our son, our only child, is incompetent,” I remember what our friend Mark said when Evan was born. “Those who are small in the eyes of man, stand tall before God for all eternity.” I remind myself yet again that life on this earth is short. Eternity is what counts. Evan, who loves God will all his heart, will spend Eternity with no hindrances, knowing nothing but joy.

“God makes His people strong and He gives them peace.” Psalm 29:11 (Message Version)

Talking about Respect

Why do we wrestle with the issue of respecting authority? Respect is something we can give to someone or withhold from them. It is our choice. You can’t force someone to respect you, no matter how hard you try. Either they will or they won’t.