#10

Last week, I had tears on my pillow when I thought about today. Grant's 10th birthday - a cause for great celebration to be sure, but also a time for reflection. It doesn't take much thinking to bring on the emotions and so I try my best not too. After many years of rabid research, IEP trainings, and ongoing therapies, the last year or so has been a nearly conscious avoidance of such things. A little less knowledge, a little less hope, but a lot more acceptance.

So, back to #10. Nothing like throwing a party for your 10 yr old to face the fact that your 10 yr old has no friends, at least not in the same way we all have friends. At the same time, there is nothing like throwing a party for your 10 yr old to realize how incredibly blessed he is to have so many friends and family who love him to no end. But then when those incredible people ask 'what does he want' and you can't come up with more than a couple of things that would bring a smile to his face - well you just can't avoid the unavoidable.

But I'm really not a pessimistic, wishy-washy autism dad. My tears are only found on my pillow. My job is to be strong and lead the way for my family. And one of the true joys in my life is to see joy in Grant's life.

Today, #10, was a great joy in Grant's life.

Staci did a fantastic job planning the party. Where do you go, and how do you know he will like it? Her great idea was the local inflatable jump house place - a big room with cool inflatables. Who do you invite? His class - 10 great kids, but they don't really talk to each other. Our friends and their kids, and our family. Who knew how that would all come together, but Staci knew it would be great, and it was!

What a wonderful thing to see smiles and laughter from every kid, autistic and neurotypical. Playing together, playing alone. No uneasiness, no worry about how to act, just playing, just laughing, just friends. As he opened his presents, with the NT kids talking and the autistic kids looking around, he was grinning from ear to ear as he opened a few things he liked and threw the clothes boxes over his shoulder. And the cake... after years of not being able to eat 'real' cake, we splurged and let him eat real cake today. He savored every bite and will enjoy watching the video of it many times over.

Grant turned 10 today. He enjoyed every moment. He smiled. He laughed. Others enjoyed their time with him.

Tonight, there will be tears on my pillow, and they will be tears of joy.

Oh me of little faith

"I can't wait till Grant's 11th birthday", Owen told Staci while on the way to pick Grant up from school.

Staci pondered where he was going with that statement, wondering if he just forgot how old Grant was, or... "11th birthday?"

"Yeah, his 11th birthday is going to be so great. He's going to start talking on his 11th birthday. That's what I prayed to God and Jesus for. I want Grant to be able to talk just like us. He's going to talk like us on his 11th birthday."

And just like that, Owen let us know just how aware he is of Grant's autism and how much he loves his brother. And just like that, he reminded us to remember our dreams - don't give up Mommy and Daddy!

Netflix loves me

We've got the cheapest Netflix plan - 2 a month, and we rarely use them both. We used to have the 2-at-a-time plan but then we had to go with a monthly plan at Hollywood Video since that is Grant's major reward for behavior at school. It seems like every time we send a movie back to Netflix, we forget to check our queue and update it with something we want to see so the next movie seems to always be a surprise. It usually ends up being something one of us added a year or so ago and had since completely forgotten about. The movie I watched tonight, the one that had been collecting dust for at least 3 weeks, was one of those.

Fortunately, Netflix smiled on me this time, leaving The Astronaut Farmer in our mailbox for viewing at our discretion. I loved it. I'm such a sap for feel-good, dream-big, change-the-world, strong-family, slightly-outrageous-plot movies. This one had all of that and more and, like this post from a few weeks ago, it had me pondering if I still have dreams to live out. Sure, I have dreams for my family, but are they big enough? How sad is it though that a couple of hours later I still don't have any inkling of my dream? Assuming my final age is anywhere near the average of 77, I'm a little over half way there - when I'm just about to shut my eyes for the last time, what is it that I will look back on and say "I did it"?

What's your big dream or goal? Are you on track to accomplish it?

Before I start building a rocket ship in my backyard I better go check my Netflix queue to make sure the next movie doesn't make me think - any suggestions?

Tis the season

No, not THAT season. THIS family loves THAT season.

No, it's IEP season. We have IEP #6 coming up next month and today was the first round of prep work with the school. We have a meeting about a month beforehand with his teacher (we had that meeting today), at least one of the paras, speech, OT, etc. We go over last year's IEP, review status, and we discuss the goals for this coming year. More often than not, we're on the same page and given that it's been awhile since we've needed additional services, there is little to no conflict.

Over the next month, we'll refine the goals and procedures so when it comes time for the actual IEP, it's just a matter of signing forms. Sounds good, right? So why then do I feel like I got hit by a truck when I walked out of today's meeting?

This meeting is the one time during the year when I'm forced to acknowledge "everything". The other 364 days of the year we can work with him, play with him, celebrate the positive, and try to solve the problems. But reviewing the IEP goals, it hits home how slow the progress is coming. How long the road is going to be. How life is going to be. Surely he learned how to add numbers since last year, right? Surely, he can say the name of everyone in the classroom, right? No, he met a few goals, but most of the goals will continue in a similar form.

3rd grade will lead to 4th grade will lead to 5th grade and we will still be working on a subset of the skills required for 1st, 2nd, and 3rd. We'll still be trying to teach him how to talk to other kids, why that might be useful for him. I'll still be teaching him how to ride a bike, how to catch a ball, and how to pump his legs on a swing.

This is what hits me when I walk out of that meeting, feeling like an elephant is sitting on my chest. The life we live, not the life as we dream it, is going to be very, very hard for Grant. It's going to be harder for him than all of us put together.

Tomorrow, I'll wake up and the weight will be lifted. It will be time to make breakfast, time to bring laughter, time to create opportunities. But today, oh today, it hurts.

Blessings

I've had this article on global autism on my mind for some months now.

How do you begin to make a difference?

Tonight, we watched "Blood Diamond".

How do you begin to make a difference?

Our world is so vast, and so troubled. I serve. I give. I love. I hurt. But, when kids are dying because they can't communicate... when kids are killing because humans can't communicate... I wonder, how do you begin to make a difference?

These kids - hurting, suffering, dying - could just as well be my kids. Each one was certainly two people's child at one point. It's really up to each of us to use every ounce of our abilities to serve, locally, nationally, or globally.

Part of making a difference, I think, is knowing who you are, what you stand for, and where you come from. Please indulge me... as I thank God for this life I live.

I was born to two loving parents; they've stuck with their marriage through the good and bad times and they've certainly had both. They sacrificed and sent me to private school when they felt it was the best option for me. My in-laws are wonderful people and have been nothing but an encouragement to me from day one.

School came easy. I worked at it, but it came easy. I never had to struggle to learn something new.

Jobs came easy. I've never been out of work for more than a month. My mother-in-law landed me my first job in software, a friend got me in the door for the first "big" software job, and it's been onward and upward ever since. I have had the pleasure of working with wonderful people. I have never had a job where I didn't like the people I worked with. I have nothing but good things to say about every single boss I've ever had.

We live at "home". We feel safe. We have no gates to keep the intruders out and "safety" is far down on the list of worries. We have our own pool where we get to play and refresh ourselves anytime we want.

I've never felt in danger for my life. I've never been ridiculed for my skin color, my religion, or my appearance.

My wife loves me (right!?). After nearly 16 years, we are as committed as we have ever been. We've never had a day where we seriously considered ending our marriage. We're on the same page when it comes to faith, marriage, parenting, and family; while there are plenty of things where we're not on the same page, we've been able to get through those things together.

We have 3 amazing kids. I've bragged about them here for almost a year now. Each is a unique and essential part of our family.

We've been blessed with good teachers. We are able to work through IEPs, for the most part, with the school district. Grant's teachers have worked with us as we've tried various therapies and diets.

We've had the same church home for over 20 years now. Through our hard times, they've supported us. The church has given us ample opportunity to serve God. When we had the dream to start up Club Kangaroo, the church was behind us 100% and we've never heard a single negative thing about it from anybody.

Wow, we are blessed. Incredibly blessed. Don't get me wrong, there are plenty of hard issues and conflicts that we deal with all the time, but how can I even list such things in the face of the overwhelming list above? Any issue we have pales in comparison to wasting away in an institution, to starving, to killing, to dying. I know where I come from. I know who I am. I am thankful and grateful to God, my family, and my friends for this life that I lead.

To whom much is given, much is expected. Please don't ever let me forget there are kids in my town, in my area, in my state, in my country, in my world who are in dire need of help. Please don't allow me to squander my blessings; push me to make every effort -

to make a difference.

Moving Forward

As the clock ticks into the wee hours of Sunday morning, my attention is fixed to a show I Tivo'd last week - Eyes on the Prize, on PBS. Evidently, it has not been shown on TV for quite some time, and this is a shame. As someone born the year that both Martin Luther King, Jr. and Robert F. Kennedy were killed, my experience with the Civil Rights Movement comes purely from TV, Film, and stories handed down. This documentary is mesmerizing. If you have the chance, watch the 2nd and 3rd episodes; you won't be sorry.

While watching, the sight and sounds of MLK speaking reminds me of a thought I've had for several years now. Why is it that our public leaders are so devoid of speaking skills? It strikes me that no leaders, at least at the national level, are able to lead us with their speech. No one is willing to write their own material, speak their own mind, and say it in such a way that we would actually want to listen. I have no doubt that the day is coming soon when someone will figure this out. As much as I hate to say it, I don't think it even matters what this person says, it will be how he/she says it. This country is starving for a leader and one will eventually arise. Someone will step out from behind the disgusting party lines and become so popular that the parties won't be able to reign him/her in. As history has shown, this type of leader can be the best and worst of times. It is our responsibility to only allow for the best.