What's his thing?

I don't know about the rest of the autism parents out there, but whenever I'm in public and my son's diagnosis comes up I'm frequently asked some version of the "what is his thing" question. Um...his thing? Oh, you know, does he count cards, know what day of the week any date was, play Mozart by ear? His special skill?

It is a very common layperson's perspective that autistic people have a special skill, known as Savant Syndrome. In actuality, only 1-10% of the autistic population also have Savant Syndrome. My son is not one of them. In fact, in most academic areas he falls about 2 years behind his peers. And he has no musical ability that we've seen. In fact, he didn't even start singing until just this past year. He has exactly 3 songs in his repertoire: Happy Birthday, Old McDonald, and Baba Black Sheep. So no, we've seen no sign of Savant Syndrome.

I bring this up because the other day I heard the very best question about this subject. Bambam participates in an adaptive sports program called STAR Sports. I've written about the program several times. It is wonderful. It was developed by a college student (we'll call her A) and is run completely by A and a group of volunteer students. They are amazing. And Bambam loves it. 

Bambam is extremely athletic, which is sort of amazing considering he didn't walk until he was almost 2. But now, at the age of 7, that child is really an amazing athlete. Any sport with a ball is second nature to him. I've actually seen him kick a football through a basketball hoop. More than once. On purpose. He can beat anyone at a game of horse on the basketball court. His first time on the golf course, at the age of 6, he drove the ball to the green on his first par 3 shot. Seriously, people stop to watch. So its no surprise that he sort of shines at STAR sports, which is focusing on soccer right now. 

At the first fall session, A's parents had come from out of town to see the program she had developed. They sat next to me and they were so proud, as they should be. A is a wonderful, caring young lady. She is going to take the world by storm. I had a great conversation with her parents. And as I was talking to them, this took place:

A's parents: Is that your son out there in the green shirt?

Me: Yes, that's Bambam.

A's parents: How old is he?

Me: He's 7.

A's parents: Wow, he's big. I thought he was 10. And he's so athletic. His eye/hand coordination is incredible. Do you mind if I ask what his diagnosis is?

Me: Oh, no. He's autistic. And yes, he is big. And athletic.

A's parents: Is that his special skill, athletics?

And that's when I couldn't help laughing out loud. But I decided that I was going to just go with it. Why yes, his Savant Skill is athleticism. We've finally found it. 

I love it. From now on when I get the "what's his thing" question, I'm going to answer athletics. Just go with it people.

Hugs and Loves

For years, Bambam has greeted me first thing in the morning by asking for a hug. I'm not sure when this started, it must have been somewhere around 3 years of age when he began using words. Every morning He comes downstairs with arms stretched out saying "hug". Bambam is a sensory seeker. Deep pressure calms him. I think this is his way of grounding himself before the onslaught of the day starts. And of course I comply. Because what mom doesn't want to start the day with a big squeeze. It is awesome.

For the past 4 years, everytime I get my morning squeeze, I say "I love you". And for years it was answered by complete silence. And then, as words came for him, he would respond with "I like you". But he never said the word love. I often wondered why. I'm sure he could pronounce it, he says much harder words. My (probably flawed) reasoning is because he didn't understand the abstract meaning and how to apply it. The word like is used much more frequently in our everyday language. I like toys, I like playing, I like brother, etc. But love is not used as often. So it is harder for him to learn how to use it.

And then one day a couple of weeks ago when I said "I love you" during our morning squeeze, he looked at me and said, "I love planes". Progress! I was so excited as I also recognized that every autism parent needs to have thick skin and not be offended easily. I mean really, who wants to hear "I love planes" in response to telling them "I love you"? Well, I do as it means progress. He does love planes, he was learning how to use the word love.

This morning during our morning squeeze, I must have been a little distracted as my "I love you" was delayed. And I was rewarded by my little man saying "I love you". And I cried.

My 7 year old son said "I love you" for the first time ever today. 

Best. Day. Ever.

A Piece of My Heart

As a mother, I do not have a favorite. I love all my kids. But I am willing to admit that I love them all differently. They are each individuals, different and unique. What I give them, what they need from me, and what they give in return are completely different for each one. This may be due to the fact that we are a unique family. We are not the typical intact family with 2 or 3 typical kids raised from birth. We are a blended family. And a special needs family. All of these things play a role in my relationship with each of my kids.

Miracle Boy and I have a special bond. A bond different than that of the other 2 kids. Not better, or stronger, just different. He and I were alone for 7 years. Yes, Mr. Fixit and I started dating when he was 3, but we didn't reside in the same household until he was 7. During those 7 years, Miracle Boy was my right hand guy. We did everything together. When I went running, he rode his bike along side me. When I painted a room, he "helped" paint; then played with his toys and kept me company. He went grocery shopping with me, learned to mow a yard at a young age, helped decide where we would go on vacation, accompanied me when I went car shopping or looked for a house to buy. His opinion was always considered (although not always deemed correct). Right or wrong, we were in this thing called life together.

And so, when I went with Miracle Boy to get him settled in college, I went with a heavy heart. That child (young adult, but always a child to me) is a part of me. A very special, very huge part. He is my first bird to leave the nest. Watching him fly is both breath taking and heart breaking at the same time. 

I left a piece of my heart in Arizona.

Pickles, Pears, and Pretzels

Bambam struggles with language. For him it is not intuitive, it simply does not come naturally. He had no real words until age 3, sentences until age 5. He works so hard for the words and conversation he does have, but sometimes it just doesn't come out quite right. The other day I bought pretzel snacks in the shapes of the Disney "Planes" characters. Major score as airplanes are one of Bambam's obsessions. On the drive home from the fun house yesterday, this conversation took place:

Bambam: I want pickles.
Me: Pickels? I don't have pickles.
Bambam: I want pears.
Me: OK, here are your pears.
Bambam: I don't want pears.
Me: OK.
Bambam: I want pickles.
Me: I don't have pickles, I have pears.
Bambam: I DON'T WANT PEARS! (pause) I want...I want the "Dusty" snacks.
(Dusty is the lead character in the Disney "Planes" movie)
Me: Great job finding a way to tell me what you want! Do you remember what they are called? They are not pickles, they are ...
Bambam: (long pause) Pretzels!

Its a very fine line between helping him slow down and find the right word and watching him become a frustrated puddle of little boy. Sometimes we fall on the good side of that line. Yesterday was a good day.
 

Curriculum Night

I went to Bambam's curriculum night last night. It is the last curriculum night I will ever attend. 

Although on the severe end of the autism spectrum, Bambam attends our local neighborhood grade school where he is assigned to a typical 2nd grade classroom. It is his home room, where he starts and ends the day (when he's having a good day). It is where he attends (most) of the specials, ie: PE, music, art, library (again when he's having a good day). I applaud his school for their dedication to inclusion, we are so grateful for the community of acceptance they have created.

But in all honesty, Bambam spends at least 75% of his day with one of his aides in the learning resource center getting specialized instruction. Because while the other kids in his class are reading in groups, writing in their journals, or doing math worksheets; my son is learning to count to 20, the sounds of the letters, and how to write his name. That is, when they can get him to sit and focus for at least 5 minutes at a time.

Most days I'm good with this. Fact is, we've long since been down the 5 stages of grief road and have firmly landed on acceptance. We've accepted that Bambam is on his own time schedule, he will learn at his own pace. And he does continue to learn and we celebrate each and every one of his small victories. 

But, that doesn't mean that there are no longer times when I have a small pity party. And as I sat in that curriculum night listening to his classroom teacher talk about the children leaning to borrow and carry over in their math skills and showed parents their writing journals, I was sitting there hoping that Bambam was having a productive pooping time for daddy so he could wear underwear to school the next day. And it hit me smack in the face yet again. Just how far the gap is between him and his typically developing peers. And it sucks. Sometimes it just sucks. 

I cried all the way home. I was a mess the rest of the evening. I was grieving all over again. And really, I don't need that. It doesn't help anyone, least of all Bambam. And isn't that who this is all about? 

So I decided I will not attend any more curriculum nights. And if a teacher or other parent thinks I'm "that" parent that doesn't show up or isn't involved, they will simply be wrong. What I am is "that" parent who will focus on what is right for her child. 

Runners

I am a runner. I am not fast. I struggle with distances. But still, I lace up my shoes and I go out and pound the pavement. That makes me a runner. Anyone who goes out there and puts one foot in front of the other is a runner. As the saying goes "I've never seen a fake runner."

I started running in college. I ran because my roommate did and she invited me along. So, I ran for "girl time". I ran to help alleviate stress. I ran to help clear my head. I ran to make studying easier. I ran to stay in shape as I was no longer involved with competitive sports. I ran so I could eat the pizza (and drink the beer) and still fit in my clothes. And I fell in love with running.

I've been running now for over 25 years. (Holy cow, that is hard to write) I've run numerous 5ks, and 10ks, and my share of half marathons. And I still love it. I love running by other runners and getting the wave, or the smile, or the nod. Runners know what I'm talking about. The running community is like no other. It is full of encouragement and compassion and understanding. I will never forget the time I was running in a very big relay race and a runner from one of the elite teams passed me. As he passed by he said "You're doing great. Keep it up." A guy  who could run circles around me took the time to encourage me. It was awesome.

I find encouragement in the elite runners, like most people do. There ability to float across the landscape almost effortlessly with their zero percent body fat machines is awe inspiring. I watch the Ironman every year on TV and then I go pound the pavement that much harder. I realize I will never be them, but I sure like trying.

I am also inspired by the beginner runners. The ones who are not in shape, who don't have zero percent body fat, the ones who don't look like runners. And I want to encourage them. When I'm driving Bambam around and I see an overweight person struggling to run down the street, I want to roll down the window and yell encouragement to them, "You're doing great. Keep it up." But in all honesty, I hesitate. I hesitate because I am afraid they won't think I'm sincere. That maybe I'm teasing them. And that is the last thing I ever want. Its hard to get off that couch and take the first step. But they've done it. And I find that inspirational, just like the elite runners. For different reasons, but inspirational just the same. Everyone who goes out there and puts one foot in front of the other, over and over again, is a runner.

The Cost of an Education

I took Miracle Boy "school clothes" shopping yesterday. I told him it was probably the last time I would ever buy him school clothes as he leaving for collage. It was just he and I. And we had a great time. We laughed, we talked about some serious topics, he opened up about things. In general, it was awesome. I love spending time with that boy. Ahem, young man.

Waiting for him while he was in a changing room, I struck up a conversation with another mother also waiting. Her daughter, soon to be a sophmore at Johns Hopkins University, was also getting school clothes. We had a nice converasation about where our kids were going to school, what they were studying, and the cost of post secondary education. Her daughter is attending Johns Hopkins, a very prestigious, very expensive school. A school full of "spoiled, ivy league rejects" as she put it. She had a great sence of humor.

In the course of our conversation she indicated that although her daughter received several scholarship offers from other schools, she insisted on going to Johns Hopkins. Johns Hopkins does not award merit scholarships. We learned this when Miracle Boy wanted to attend Stanford. There are no merit scholarships at these schools. Probably because everyone who applies is a great student. So, her husband writes the checks every year totalling $60,000 per year. Thats right folks, $60,000 per year. As in $240,000 for a four year undergraduate degree. Almost a quarter of a million dollars, if she finishes in 4 years.

After our conversation, I started to wonder. Can a 4 year degree really be worth a quarter of a million dollars? Is a degree from a school like Johns Hopkins or Stanford really worth 3 to 4 times what a degree from our local state collage is worth? Will someone who graduated from one of these schools really make that much more money? Be that much more successful? Be that much happier and more satisfied with life? I just can't wrap my brain around it.

Clearly this family could afford to pay $60,000 a year for their daughter's education, or so it seemed. But I started to wonder, would I do it even if I could? I simply do not believe there is that drastic of a difference in the education, or the resulting knowledge or earning potential. I know there are studies on this, I looked briefly. What I found is that there is no consensus. Where one says overwhelming yes, it is worth it. The next says overwhelmingly no. And the numbers cited, about the average incomes of this prestigous group? Well, I was making that income in my prior life. 6 years after graduating from a small, local, private school. (On scholarship, otherwise it would have been the local state school) So, I just can't buy into it. Yes, you may make great connections and contacts. But this is not necessary to be successful or happy.

I ended up with a completely different internal response to the conversation than I thought I would have had. I would have thought that I would have felt bad that we weren't paying more of Miracle Boy's educational cost. That I would have felt guilty that I only gave him $250 for school clothes instead of the $1,000 the other girl was spending. That I was being miserly telling him that we weren't going to fly him home for Thanksgiving, that he wouldn't come home until Christmas.

But surprisingly, that's not how I felt. I honestly felt good about our decisions. When Miracle Boy was born, I started a college fund for him. As the time approached for him to start making some choices, I showed him the balance and told him that is what we were contributing. No more. He needed to make a decision based on what he could afford based on that information. And he did. He's attending a good school out of state that offered him generous scholarships. He worked 2 jobs all summer to make up the difference between the scholarships, what we are giving him, and the remainder for room, board, and books. He's happy with his decision. And more importantly, he's contributing to his own education. To me this is critical.

In this world were we (especially as mothers) second guess many of our decisions, wish we could do more, feel inadequate; it's a nice change to feel good about something for a change.