Rethinking age appropriate activities

One of the challenges that special needs parents may face is whether they should encourage or curb an activity or interest that may not be age appropriate. Having a 14 year old that wouldn't think twice about buying a stuffed animal isn't the norm, but it's what life is like in this house.

Every Halloween and Easter, I'm faced with the same question. Are the kids too old for Trick or Treat and Easter Egg hunts? I have decided to follow their lead. If they ask to participate, then we do it.

So we did our traditional Easter Egg scavenger hunt. In an attempt to have them improve their reading skills, I like to write down the clues to the egg locations. We always have the kids wait in our bedroom while we hide the eggs. Once we are ready to start the hunt, the boys take turns reading the clues and try to figure out where each egg is hidden.

Since it snowed in the morning, we kept the hunt indoors.

But it was easy to hide the eggs among all of the nerd gear in their rooms.

The final clue leads them to their final prize. If we are going on vacation in the summer, I usually put in things that go with the trip. It could be a travel guide, tickets to a Broadway show, etc. This year, we have no trips planned, so the bag consisted of candy, a couple nerdy items, and books to read during the summer.

It was a nice day. The kids have not outgrown the Easter Egg hunt. Just last week, Nik wrote something for school where he talked about his favorite traditions, and our Easter Egg hunt made the list. So we are going to keep doing this until the say they don't want to. I don't care if they are in their 30's. Who says that we have to outgrow traditions?

There's been an awakening. Have you felt it?

Yes, it's another Star Wars quote to kick off another blog entry. Old habits die hard. But I will put a different spin on this one. This is about an awakening of faith.

Let me take you back some 14 and 12 year ago, when we first came to the realization that there was something different about our boys. Nik was 2 when we first noticed something different. Before that, he was a typical baby, meeting all the appropriate milestones right on time. Then it was as if he hit a brick wall. There was no progress, only regression. He lost a lot of speech. He was not making progress on fine motor skills. He would go through moments where he would just stare ahead and not respond to his name. I would clap my hands in front of his face to get his attention, and he would look at me for a second, then turn away.  Noah's story is a bit different. Noah didn't regress, but he just stopped making progress for a while. Autism is different with every person, even among siblings.

When we finally did get a diagnosis for our boys, I went through the typical emotions that any other special needs parent goes through. I was scared about the future. I had no idea what the future would hold for them, what kind of job they would have, if they would be able to have meaningful relationships. There were so many unknowns about their future. With all of that worry on my shoulders, I also worried about their faith. I am someone who has always been strong in my faith. Even when I had no church, I was strong in my faith in God. I wanted my children to have that same faith in God. I can't imagine going through life without feeling the peace of knowing and loving God. It broke my heart to feel that I may not be able to teach my kids about God.

I feel so fortunate to have found a church home for us. The kids are right at home, attending bible study with their special needs ministry group. They have the opportunity to attend church, listen to great music, then head to their bible study. They have learned so much with the group. The ministry has an amazing team of staff and volunteers who pour their heart and soul in to these kids. Because of this ministry, my boys are deepening their faith and learning what it means to following the teachings of Jesus.

This weekend, the boys were confirmed along with their peers. It was a moment that I will never forget. Thinking back at a time when I worried if they would ever develop a relationship with God, and now seeing them at the alter to receive their blessing. I cried, and I'm totally not a crier. I cried the ugly cry. You know the one, ladies. Let's just say that I'm thankful for waterproof mascara. I was moved to see the progress that my sons have made. Life is never easy. And it's even more of a challenge when you have Autism. I know that God does not protect us from having struggles in life. Struggling is a part of life and we all must push through it. But I do know that my faith has carried me through some pretty tough stuff. And I know that faith will carry my boys as well. So we are on the right path to knowing and loving God. We are ready to learn about serving God.

There really has been an awakening in my boys. I have felt it. They have felt it. Have you felt it?

Everything you need to learn about life, you can learn from Star Wars

There is a theme to this blog. Well there are multiple themes. But my main discussion points are about Autism, and our journey in raising two children on the spectrum to be productive and happy members of society. There is one very important tool that we use to reach our kids. And that tool is nerdom. We embrace nerdom here. I don't know if that's a word or not, but I just made it one. We not only embrace it, but we use it as a tool to teach the kids things that are difficult to explain to someone on the spectrum.

The Star Wars obsession runs deep in this house. We are Star Wars fanatics. I have had a 40 year love affair with this movie. I am convinced that any important life lesson that I want to teach my kids, I can teach them through Star Wars. So today I present to you the 7 important life lessons that I have taught my kids through Star Wars.

1. "Do or do not. There is no try." This one is our motto. In fact, it was the title of my very first blog entry. We can live our lives frozen in fear, afraid to do anything, or we can just go for it. That little phrase can help me to convince the kids to go outside their comfort zones. It is also a way to encourage them when they are doubting themselves. You are either going to do it, or you are not. Why not go all in?

2. "Don't tell me the odds." There are challenges with Autism. There is no way around this. There is no way to protect the kids from this. I refuse to limit them. Sure, the road is paved with challenges, but they can succeed if they believe. Don't let the odds stop you, kid. Spread those wings and fly.

3. "Patience you must have, my young Padawan." Being patient does not come easy, especially to a young person with Autism. We worked hard on this one, and I think the kids have come a long way. You can't go through life expecting instant gratification. Sometimes you must wait.

4. "Use the force, Luke." You have the ability inside you. You can do it! Believe and you can succeed.

5. "I find your lack of faith disturbing." Always believe yourself. Surround yourself with supportive people who believe in you. Life is too short to let someone drag you down.

6. "Hey we don't serve their kind here! They'll have to wait outside. We don't want them here." Noah loves this scene. The cantina scene music might be his favorite song. It's even his ring tone. That quote is a way to teach the kids that sometimes people will be just plain mean. Some people discriminate. How you handle that will speak volumes about your character.

7. "When I left you, I was but the learner. Now I am the master." One day, the kids will move on their own. The goal is to grow up to be the master. Work hard at those social and job skills, and you will be the master.

I could go on with this list. Seriously, there are so many words of wisdom wrapped up in Star Wars movies. These are just a few that come to mind.

And yes, we have seen Star Wars The Force Awakens. Three times. And it was awesome!

May the force be with you!

Autism and Coping with Loss.

Our family suffered a loss last week. Alex's father passed away. And to make matters worse, it happened while Alex was on an overseas business trip. It was hard to make that call and let him know. He was so far away, and he had no family to comfort him. Fortunately his company went into action and helped him get on the next flight. This allowed me to focus on making arrangements for the kids and I to get back to Los Angeles.

The initial call we had received was that my father in law was very sick and not expected to live. I received that call just before the kids went to bed. I told them that their grandfather was very sick, and that he would pass away soon. We sat together and prayed for everyone back home. Nik even dropped to his knees to pray. Shortly after that, I received a second call to let us know that he had passed. The kids were already asleep by then. I called Alex to break the news, then immediately started working on arrangements for the kids and I. The worst part was knowing that Alex was so far away from home, with no one around to comfort him.

The next morning, I woke the kids to tell them the news. They were confused and in a bit of a shock to learn that we were going to be leaving in a few hours. But this is when our hard work with the kids really paid off. We don't bubble wrap the kids. We work every day to teach them to be prepared for life. The boys definitely rose to the occasion. They had questions, of course. I could tell the kids were nervous, but they did a great job getting their emotions in check.

At the airport, we were picked for extra security screening. We did the full body scan, then the pat down. Both kids followed instructions, and the TSA were great at being patient and repeating commands if the kids didn't respond. Once on the plane, the boys helped me get the suitcase up in the overhead compartment. We usually fly once a year, so we have our system down to a science. We pack the same snacks, ipads, laptops, etc. Having an in-flight routine definitely helped to keep the kids calm with all the sudden changes.

On the way over, I talked to the boys and explained that people would be crying. Our loved ones would be very sad. I warned them that there would be a Wake, that we would get to see their Grandpa in the casket. I told them that they could go up and visit him, or just stay in their seat. I wanted them to feel like they had options. Since my in-laws are Catholic, I also explained that there would be differences from our church. I warned that we would see cross at the alter, and that there would be a statue of Jesus nailed to the cross.

It was a long, hard week. My father-in-law was a beloved family member and no matter how old he was, it was still hard for everyone to say goodbye. Nik seemed to really be effected seeing his family crying at the service. He refused to go up to the casket for most of the Wake. But he finally did decide to go up at the end. Noah, on the other hand, asked to go up right away. He talked about his Grandpa being in Heaven with God.

I'm so proud of my boys. I think they learned some valuable lessons about supporting others through grief. Every time someone came over to visit the family, the kids got up to greet them. Noah would give them a bear hug, then ask who they were. The kids were able to roll with the punches at all the changes to their routines. They are are strong, resilient boys.

So what is the point of this long blog post? Simply put, it is to say that it is impossible to avoid life changes. While you don't want to live your life planning for someone to die, there certainly are ways to prepare your children for the death of a loved one. Being 1,000 miles from home, this means last minute flights, leaving home suddenly, coping with not so perfect flight connections. Take every opportunity and turn it into a life lesson. Your kids will be better off for it. Don't bubble wrap them. Let them live and experience the bumps of life. It will help them to cope with all that life brings them. Even the loss of a loved one.

The boys patiently waiting as we waited for photos to be printed for the funeral service.

Killing time on the long journey home. We had a layover.

Somber and tired from an emotional week.

"Nik, we have a layover and need to wait on the plane for a bit. Are you ok with that?"

Goodbye Alan Rickman! Autism and mourning a celebrity.

We lost some very talented people in the past week. First David Bowie, and then Alan Rickman. I'm a David Bowie fan, so I was sad to hear of his passing. But as I sat on the steps waiting for the school bus that morning, I actually gasped when I read that Alan Rickman had just passed away. We loved him in this house. I broke the news to the kids, and they were shocked by the news. Noah said "Oh no!", then just stared in shock for a minute.

I think I've shared this before, but when Robin Williams died, Noah took it so hard. To this day, he still talks about him, and prays for him on occasion. When the kids read a book or watch a movie, the characters become a part of his life. They identify with them, and they help them make sense of a world that often does not make sense to the kids. When the actor passes away, I really do feel that Noah worries about losing one of his connections to the world. The death seems to stay with him.

For my kids, movies aren't just an escape or time killer. Movies seem to help them get in touch with complicated feelings, make sense of challenging situations, and I'm not afraid to admit that they are a wonderful conversation starter. If you ever are around my kids and don't know what to talk about, just ask them about Star Wars, Comic books, Harry Potter, Lord of the Rings, or any other nerdy topic, and the kids will pretty much talk your ears off.

Snape was such a great character. Hands down, he was our favorite character in Harry Potter. He had the best lines in every single movie. It was his delivery that made some of the lines stand out. I can still hear him say "Turn to page 394." There were plenty of lines in the movie that the kids could recite. Snape was the most interesting character. He kept you guessing. Was he good, was he bad? People are often complicated and hard to figure out for a person with Autism. Snape was a perfect character to let us talk about the complexity of people.

Snape's character had so many layers for the kids to explore. His complexity was the perfect way to teach the kids how people could be more than just one thing. He was very unpredictable. Unpredictability is normally not something that people with Autism like. Snape was a wonderful example of unpredictability. He could be grumpy at times, but he protected Harry.  He was also fiercely loyal and in the end, a hero.

Goodbye, Alan Rickman. Thank you for your portrayal of Snape, and how it taught my kids about the complexity of the human spirit.

The benefits of traveling for the child with Autism

Traveling with 2 children with Autism isn't always easy, but it certainly is worth the effort. We started traveling when Nik was a year old. Noah's first trip was when he was only a year old as well. In every trip, the kids always learn something about the world we live in. Travel gives so many opportunities for them.

They learn how to roll with what life brings them. There is nothing like being stuck at an airport, or an airplane for 5 hours to teach you to make the most of every opportunity. In the beginning, it was an opportunity to learn not to kick the seat in front of them. Now, it's an opportunity to talk to TSA agents, independently pick up your items off the security checkpoint, ask for your drink and snack when the flight attendant comes by. And most importantly, remember that there are others on the plane. No screaming, kicking, or jumping.

You are not the only person in the plane. Respect others and their personal space. An important lesson.

They learn how to deal with lots of people. You can't expect to live in a bubble all your life. Bringing them out into the world teaches my kids how to control some of their behavior in public. Jumping up and down, hand flapping, playing with your rope in public isn't always acceptable. You need to get out of your own little world and mingle with others sometimes.

So many people!

Explore unfamiliar surroundings! Children with Autism love to stick to routines. But Alex and I are firm believers of always trying to push the kids to try new adventures. Why limit yourself? Be bold and try something that you may not be crazy about at first. You may surprise yourself. Embrace every opportunity to try something new.

They were nervous to feed the stingrays, but quickly found themselves enjoying it.

Travel allows you to see the beauty in the world. A learning opportunity is around every corner. When the kids were little, we would point out things like the beautiful colors of the Caribbean, or taught them to say hi in a foreign language. It could have also been as simple as making eye contact with someone who was talking to them. Now that they are older, we talk about the history of a place we are visiting.

What a wonderful world!

Finally, travel is just plain fun! Yes, travel is probably more challenging for us than the average family. There are things we have to plan for and think about that many other families don't have to. But the extra effort is so worth it! These kids are worth it! It has always been my dream to take the kids on a European trip. Something always seems to get in the way. But I have faith that we can pull it off!

How to explain a world gone mad to special needs youth.

It's been hard to watch the news lately. It's an ugly, dark world that we live in. On November 15th, terrorists attacked  Paris. Innocent lives were lost. That night, I talked to the boys about what happened. Nik is old enough to know the details, and we had a long conversation about it.  And here we are just a few weeks later. Another attack, this time in San Bernardino, California. And the latest news is that it is looking like there was a link to terrorism.

This one hits close to home. We are originally from California, and are familiar with the city of San Bernardino. The attack happened at the Regional Center. My boys both received services from Regional Center. When the attack first hit the news, I immediately went to our old local news website to stream their coverage. I could see the people running out of the building, and it was easy to put myself in their shoes.

The kids and I sat down and talked about the events that were unfolding. I let them know that there was another shooting, that there were people hurt and that some did not make it out alive. How do you even make sense and explain something like this? When your kids ask why, what can you even say?

My go-to method to explaining complicated issues is to tap in to the kids knowledge of comic books and movies. We talked about Star Wars, and the Dark Side that always tried to spread evil. I said that the terrorists are very much like the Dark Side. They want to spread terror and fear, and are willing to destroy anything or anyone in their way. People can start off good, but can be influenced and twisted into something evil. Like Anakin in Episode III, who eventually went to the Dark Side and ended up killing innocent young Jedi children, and even his wife. This really seemed to click with Nikolas. He actively participated in the conversation, and totally understood the comparison of the terrorists to Star Wars villains.

So the next question to tackle is why. Why would God allow something like this to happen? I explained that we are not puppets. God does not control us like puppets. We all have free will and can make the choice to lead a good life, or a bad life. Like Ultron said in Avengers Age of Ultron "I once had strings, but now I'm free. There are no strings on me." Ultron had the choice to be good or bad. He made the choice to be bad. Ultron later told the Avengers that there was only one path to peace, and that was to destroy the Avengers. This is very much like what the terrorists feel. They want to destroy any country that does not follow their agenda.

I realize that it's a silly comparison. But when you are trying to explain something as complicated as this to a child on the spectrum, you need to be able to tap in to something totally outside the box. You need to tap in to things that your child is fixated on, to get them to understand. For my kids, it's nerdy things like Star Wars and Marvel comics.

I don't want my children to live in fear. I explained that we need to be good to each other. We need to help people and make the world a better place by being kind and loving to others. We should continue to live our lives, and be thankful for the soldiers and police who protect us,

I hate that we have to talk about these things. I wish we lived in a world where I didn't have to tell my children that there were terrorists out there. I hate the gun culture in this country. I'm angry that so many people have had to die.

So now what? Well, I'm just going to end this blog entry with something that I wrote on facebook this week.
"Here is what I prayed for last night. I prayed that the families and victims were surrounded by love and support. That they were being comforted on such a dark day. I prayed that our leaders find the strength and courage to do what is right. I prayed for the law enforcement who put their lives on the line to protect the innocent. I prayed that we can all be sources of light to brighten a world that is increasingly becoming dark and filled with hate.

Be the light today, friends. Go out into the world and be the light in darkness."