Back From Vacation

Good Evening!

I have to admit, as fun as vacation was, its nice to be home.  Hopefully the time away from work, and even from writing, will bring a fresh sense of energy to what I am working on.

One thing I wanted to do is say hello to a couple I met one morning at the parks.  They were from Yorkshire, England and had seven-year-old twin boys, both with autism.  An amazing challenge that I can't begin to wrap my mind around.

I also wanted to say to Tyler....I missed you buddy.  There were many times that one of us would stop and say "Tyler would have liked that".  Of course there were also many times we said "thank goodness Tyler wasn't here for this", especially whenever we were stuck waiting in crowds.  

Now....break time is over....and its time to write about new things, and in new ways.

Be well and God bless.    Tom

Vacation

Taking vacations with Tyler had always been a double-edged sword.  On one hand it was great to go to the beach, or Disney, and try to get some relaxation and enjoyment.  On the other hand, new surroundings made for a different set of concerns and anxieties.  It was always difficult to fully relax regardless of how things were going.

Very soon, my wife, daughter, in-laws and I will be heading back to Disney.  It makes me reflect back on some of the good times with Tyler there.  They weren't always the easiest trips, but they generally went well and we made some terrific memories.  I wanted to share just a couple of those nice memories today. 

 

Tyler especially loved watching the fireworks show at Epcot.  The music and the lights would capture his attention and make him point and smile.  I often found myself watching him more than I watched the actually fireworks.

There were a few rides at the parks that Tyler really enjoyed.  His favorite may have been Splash Mountain. He would look for the big hill and laugh 

 all the way down to the bottom.  He also enjoyed the Tower of Terror!  I will never forget hearing him yell and clap after the ride was over.  He also enjoyed Test Track.

I will also never forget when we all met Mickey Mouse at a greeting place.  We got some great family pictures, and as we were leaving, Mickey reached out to me and gave me a hug.  It's difficult to explain but the person in that costume wanted to show me the kind of understanding and compassion that only that kind of hug can show.  It was a human, connecting moment that I will not forget.

The last time we were there I knew in my heart that this was likely his last trip to Disney with us.  While there is always an

open door of possibility, reality would suggest that such a long trip is not something he would enjoy anymore.  As we were leaving the last park on the last day, I took a private moment with him and posed in front of the Epcot ball.  I told him that we had been through some ups and downs on those trips, but I was honored to take them with him, and I would never forget them.  I promised to only think about the laughs we enjoyed there together.

This trip will be very different without Tyler.  I am looking forward to giving Sam the attention that she has been missing on these trips.  I look forward to taking more time for myself to relax and enjoy the scenery.  I will also miss Tyler's company.  I will think of him when we come over the hill of Splash Mountain, and he will be right there with me.

Be well and God bless.   Tom

New Venture

Good Morning!


I am thrilled to announce that I am doing guest blogging for Jason's Connection!  They feel that our little story can help others to navigate special needs caregiving.  

Every time we reach a new person it's like a brand new blessing being showered down on us.  I can only hope that our message touches each of them and helps them to continue to move forward in their own lives.  

Take a look at our smiling faces at:  www.jasonsconnection.org.  We are in the section marked "Blog".

Just a quick note:  I want to sincerely thank everyone who has offered ideas and encouragement over the last year.  Now our story is able to reach the quarter million followers of Jason's Connection.  This journey continues to amaze..

Be well and God bless.   Tom

KISS

KISS...

Could be...

But I was never a fan.  Could be...

Which is nice, but not what I am thinking.  Kiss is 

KEEP IT SIMPLE STUPID.  I say this "tongue in cheek" because I'm not suggesting anyone is stupid, but I'm suggesting that as caregivers we get lost in the details.  We get "stupid" to the simple things because we try to think on a more complicated level.  We lose the forest for the trees.

Today we had our sunrise church service outside in a wooded area, where we listened to a simple message of love and redemption.  I couldn't help but be taken in by the surroundings of nature.  It was as though there was a supporting cast of birds and trees hired specifically to frame the very purpose of our visit.  We sang songs, aided only by a talented man with a harmonica.  The message itself was brilliant in its simplicity and brevity.  

It made me think.  When was the last time I stood and watched the dawn?  Or listened to nature work in harmony?  Or listen to a message and really hear what the message was telling me?  How often do I get wrapped up in the details and forget the basics of why we are here in the first place?

The autism spectrum is complicated.  Caregiving for our children, siblings, or parents is complicated.  The best way to counter complicated is to simplify.  Strip things down to the bare roots and rebuild.  Start with the basic needs of all people; to be safe, healthy, nourished (physically and spiritually), and loved.  If those things aren't met, there should be nothing else happening until they are. No house stands without a strong foundation.    

 Regardless of where we are in our lives, we should always make time to take inventory.  For ourselves and our loved ones, we must be willing to purge the needless details in our lives in order to refocus on what we really need.  We need to remember that there are sunrises, trees, and birds available to us EVERY DAY, but it's up to us to put them into our lives.

Be well and God bless.  Tom

Tyler Visit

Good Evening.

Last night we took another step forward in developing a routine to allow us to take Tyler out for more dinners and other such activities.  Our most recent goal has been to make Tyler comfortable enough to have us pick him up from his home, without staff, and take him out for a little while.  

This may seem like a simplistic goal, but for someone like Tyler, routine is EVERYTHING.  As his move to a residential home has taught me, routine is more important than any single person will ever be in his world.  Routine is what makes him feel safe, loved, and ok.  Our job is to understand this, and make this our priority as well.

When we pulled up to his house, we could hear him inside watching baseball.  "STRIKE!" he was shouting "BASE HIT!!".  He was having a good day.  We stepped inside and said hello. He looked a little puzzled, but went with it.  We got some hugs and he was ready to head out to the car.  The entire car ride was full of his mimics and stims aimed at getting responses from me.  He wanted to go through every car routine we ever did, from tapping my hand on the gear shift, to adjusting my hat 100 times.  He was full of joy, and moving at a million miles per hour.

We met another couple he hasn't seen for a long time.  Tonight's choice would be Mexican! "The King of Chips and Salsa" dove right into the basket.  A few minutes later the first glass of soda was gone too.  All the while he kept right on smiling, stimming, and blurting out happy speech.  At no point did he become impatient, or show any sign of even considering being aggressive.  This was just plain old happy Tyler.  He didn't eat much, which we chalked up to being distracted by seeing everyone.  But he behaved well for about an hour, which is when he started queuing me that he was ready to head back.

Tyler remained outwardly happy until we were about a half mile from the home.  He just suddenly got quiet.  It was as though he needed to process the transitioning he had been doing.  We pulled up to the house and he marched straight for the normal door to go in. Once inside, he went straight to his room, got his slippers, and sat down on the couch to do an activity and watch more baseball.  He was back into his routine.  He was home.  He blew us a kiss and gave us hugs and eagerly waived goodbye.  When he says goodbye, he is really saying "goodbye it's time for you to go".  

Robin and I left, and had good feelings to share on the way home.  He looks healthy.  He looks happy and secure in his surroundings.  His demeanor is very telling that he is in the right place for him.  Of course we miss him, every day in fact, but we also now have a life together, and with our daughter, that we can explore as well.

We are thankful for our time with Tyler, and hopeful that the future is bright for all of us.

Be well and God bless.   Tom

Awareness Into Action

Good Evening!  What a beautiful Sunday we had in the northeast today.

This month we have heard a lot about autism awareness.  I love the idea of using blue lights and other methods to raise awareness.  Raising awareness is critical to becoming a more accepting society, and to understand how we can enrich the lives of those people on the spectrum...

Now for the BUT.....

No....not THAT butt.

As wonderful as awareness itself is...I believe we should be promoting awareness AND action.  Through awareness we can change the way people view things, but if that is not somehow turned into action, things change too slowly.  Our loved ones on the spectrum need to be understood, and that is a tremendous help, but they also need action, and they need it quickly.

Depending on the source, you will find that 1 in about 68 children are currently born on the autism spectrum.  This is a terrifying statistic that has even been sited as high as 1 in 45.  Obviously the largest area of concern is with providing proper support for all of the individuals with these disabilities.  However, when considering the medical costs, therapeutic needs, emotional toll on caregivers, need for research, special education, etc., we are quickly losing ground in this fight.  As the need grows, the resources are becoming more scarce. Most frightening of all for me, is thinking about how all of these diagnosed children will become adults in the not-so-distant-future.

AWARENESS IS NOT ENOUGH.  

We have to inspire people to take action.  This can be accomplished in many different ways. We must become advocates for our children as well as the other children around us who are in need.  Our voices alone can inspire action.  We need to educate our schools, churches, and medical providers on how to better accommodate our children.  When we see things that aren't working, we must demand change.  For example:

We took Tyler to a local major amusement park.  This park had been built many years ago, so in my opinion much of their handicap accessibility was lacking.  One particular ride we wanted to get on had an exit that doubled as a handicap entrance.  Unfortunately, the exit had a blind spot which blocked the operator from seeing us.  So we stood there unable to get the operator's attention for a very long time.  We finally did, rode the ride and all was well.  And I could have stopped there.  But when I got home I immediately wrote an e-mail to the park administration and explained my concern.  To my surprise, I got a very prompt reply from an engineer who asked for my suggestion on how to make sure this never happened again.  I gave them a few suggestions, like a simple mirror, or a button to press which would light an indicator that would alert them to someone's presence.  I was informed that a design change would be implemented immediately.

Being aware that there was a problem didn't fix the problem, action did.  While accessing an amusement park ride is not going to change the world, its a simple example of what one voice can do.  When there are larger problems, a chorus of voices drive change.  

There are so many other ways to take action.  There are a world of opportunities to volunteer our time.  We can get involved in support groups, propose legislative changes, raise funds, write books, or simply reach out to families in need.  Being aware that the family next door has an autistic child is great, but offering to help shovel snow, or making them a dessert, or simply asking what you can do to make a difference in their lives is powerful action.

Yes...lets promote awareness..but lets do more to promote Awareness Into Action!

Be well and God bless.   Tom

Welcome Jason's Connection

Good Morning!

Last night, Jason's Connection, a wonderful and amazing resource page for special needs parents, shared our little blog.  Since then, we have had 2000 page views in 12 hours. Tyler would pump his fist and say "YESSIR!!!"



The very thought of so many people reading our story makes me very emotional.  Tyler was a baby that was not supposed to survive to be born.  When he was born, we were told that he would likely never walk, or talk, or function in a normal way.  It wasn't hard to think that his life would come and go quickly, and perhaps leave very little imprint on this earth.  Yet, despite not being able to speak meaningful conversations, or write, or work a job, he changes lives.

Through his perseverance he inspires others to persevere.  Through his joy and his smile, he causes others to smile and feel joy.  And through his story, he allows others to look at their situations in a different way, and perhaps change something in their lives.

I, myself, am just an ordinary Dad.  I work a job in the safety field.  In my personal and professional life I enjoy writing.  I write everything from manuals and policies, to poetry and blogs.  I'm currently attempting a children's book from my daughter's perspective, and a book about being Tyler's Dad.  Other than that, I watch too much sports, eat too many french fries, and stress about all the things everyone else does.  

What makes me feel extraordinary is that I have a son who inspires love and tolerance in so many parts of the world.  I have a wonderful group of friends inside and outside of our church that love us for who we are.  I have a wife who stood by all of us during the darkest of times and never stopped believing in us.  No matter how many times Tyler was aggressive toward her, she loved him more every day.  And I have a daughter who made sacrifices because, even at a young age, she understood that her brother needed all of the support he could get.  

Best of all, I continue to watch Tyler, and all children with disabilities, be honored with each and every comment, blog visit, and conversation.  Every time someone tells me that his story has changed them in some way, I understand what a gift he is.  

Thanks to Jason's Connection for the unbelievable work that they do and the honor of letting this little blog contribute to it last night.  I'm truly touched.

Be well and God bless!  Tom

Why Ty Goes to Church

Good morning.

I was asked a very interesting question about Tyler going to church.  The question was "do you think Tyler really understands?"

There is a larger question there I believe.  How does religion play a role in raising a child with autism?  Especially if the child is non-verbal and "lower-functioning"?

For full disclosure, allow me to say that my own relationship with organized religion was strained for a very long time.  I used Tyler's disabilities as an excuse not to attend church.  I told myself it wouldn't be appropriate for him to go anyway.  I was using his disability to hide from my own demon.  Even when Tyler moved away and was attending his church every Sunday, I doubted whether he should be going, and I still didn't go myself.

All of that changed when we attended Tyler's baptism.  My eyes were opened on that day to just how important it was to him to be included in the church.  From that point on I supported Tyler attending, and made sure that we were attending also.  

So what really is the purpose of Tyler attending?  First, I think about how he affects those around him.  The congregation is delighted to have him worship along side of them.  They smile at him, shake his hand, and welcome him.  They consider him to be part of their family and I believe he enriches their experience.  He is an example of how we need to include our disabled brothers and sisters in every aspect of life, especially the spiritual aspects.

For Tyler, I can tell the church services give him a sense of being loved.  He feels surrounded by the warmth of his congregation.  He claps to the music.  He feels an incredible presence, and what he interprets that presence to be is irrelevant.  And for that matter, who am I to say exactly what he understands?

Lastly, the church is a positive influence on those around Tyler, that we may better understand him and respond to him.  It allows us to understand why compassion and tolerance toward Tyler, and all of those around us who need us, is in harmony with what we are being taught.

It'a also a great comfort to know that Tyler will be taken care of for all of the days of his life, and in the hereafter.

Be well and God bless.   Tom

A New Day

Good Morning.

I woke up this morning and the sun was shining.  It looked like a beautiful spring day.  The sky was blue, and the birds were happy to be alive.  The vision from my window looked so simple and easy to understand.  Not like our lives can be on this side of the glass, full of complications and complexities.  

The message at church continued along the series which says we can "restore our mess". We are, without doubt, dirty, messy, and imperfect.  But the great news is that no matter how messy things are, no matter how much we mess up, no matter what is in our past, no matter what complications we face in our life....it can all be rinsed away and we can become clean once again.

The message made sense to me in the context of the beauty of the clear morning.  It had been a raining, cold, miserable day on Friday and Saturday, and yet all of that gray was gone and the colors had returned.  In fact, everything was growing and beautiful BECAUSE it had rained.  

All of us (caregivers or not) desperately need to remember that every day is a new opportunity to change the course of our lives.  We could wake up and forgive someone that we have been holding a grudge against.  We could ask forgiveness from someone who we have done wrong to.  We could take a first step to fight addiction.  We can decide today is the day I will no longer raise my voice in anger to my wife or children.  We can set aside our work so that we can be attentive to our family.  We can reach out to our neighbors, our family, our friends, and just say "I love you and I am here for you".

Each new day is a gift.  We don't know how many of those gifts we will receive, and some day we will have our last morning on this earth.  We cannot waste such a gift. 

I challenge every reader to think about the one path you want to change in your life.  What is that one thing you do that you wish terribly that you could change?  Today is the best day to take one step in the right direction.  

Good morning....its the gift of a new day.  What are you going to do with it?

Be well and God bless.   Tom