Free Concert

Good evening!

Tyler's residential agency is sponsoring a concert where there will be great music and fellowship.  There will be great accommodations for special needs folks and caregivers, but everyone is encouraged to attend!!

Love and prayers to everyone involved in such a wonderful event and ensuring that all of our community can attend.

When I see this event it reminds me how much better our world is when we are united.  How much kinder our world is when we work to care for those who are truly in need.  How beautiful our world is when we give what is in our hearts rather than being divided by hatred.

Be well and God bless.  Tom

Introducing CAN

Good Evening!

I have been very humbled by the numbers of people worldwide that this blog has reached. As a caregiver for 25 years, and gotten to know many other parents along the way, it has become clear that there is a gap between caregivers and agencies.  My personal belief is that with money and personnel at such a premium, the resources must go directly to the care of the children.  Unfortunately the result is that this leaves parents to feel their way through the dark.  This can cause caregivers to become frustrated and children to miss out on the level of care that they desperately need.

With this is mind, I have founded the Caregiver Advocates Network (CAN).  The mission is to narrow the gap by placing important information on the website www.mycaregivers.org
The immediate goal is to use the website to create a directory of service providers in the local area so caregivers can more quickly identify who to reach out to.  Another goal is to create meetings with caregivers to find out what information and services they are in the most need of, and then to take action to post the answers.  Also on the immediate list is to attend agency meetings and symposiums to represent the caregiver point-of-view.  

The blog will continue to run with posts specific to Tyler and our family's experiences.  The website www.mycaregivers.org will be centered on advocating for the caregivers of the local area.  There is also a link off of the website to reach Tyler's blog to make it more convenient.

Again, thank you for your support and please feel free to visit the website as well!

Be well and God bless.  Tom

A TRUE Spooky Story

Good afternoon.

What I am about to write is 100% the way it happened.  It's a spooky story, especially for someone like me who doesn't believe in any of that kind of stuff.

Everyone who reads this blog understands that walking with Tyler has always been an important activity in our lives.  Not only is it fun, but it gives us all some important exercise as well as gives Tyler a positive outlet for aggressive energy.

About 20 years ago we lived in a house that had belonged to my Grandparents for many years.  It was in an older neighborhood that wasn't suitable for walking necessarily.  But there was a very large and very old cemetery with a gate right at the end of the street.  The cemetery is so old that there are people from the 1700's in it.  

Now this might seem like a strange place to take walks but we enjoyed it.  We would often look at the names and dates on the markers (we even came up with ideas for baby names there).  The paths were always empty and we could walk among the old trees and monuments.  Our family plots are on the other side of the cemetery so we would occasionally stop and see my Grandparent's markers.  But mostly we just walked the perimeter of the cemetery and enjoyed the quiet.  At times we even took the dogs over with us so they could run and pretend to hunt squirrels.  My Grandpa would walk with me when I was very young and used the dates on the markers to teach me how to do math quickly in my head.

One day we were walking with Tyler as we had on so many occasions.  We were doing our usual route which took us past the area where our family members are buried.  But as with so many other times we were not planning to stop at our headstones.  To this point we had never, ever seen any indication that Tyler had any notion as to that area holding any particular value and I am also dead certain that he has no concept of what a cemetery is or anything like that.  As we approached the EXACT row that contains my family members, Tyler looked in that direction and stopped COLD.  He stared in that very direction for a few seconds.  Suddenly he smiled and ran with open arms towards that area in a manner which I have only seen when he would recognize someone he knew very well.  Very quickly, I'd say about 5 - 10 steps later, he lost his smile and slowed to a stop.  His arms slowly dropped and he blinked a few times as though whatever he saw had suddenly dissolved with the breeze.  He continued to stare in that direction for just a moment more and then turned and walked back to the path.  

We had never seen Tyler react that way in that spot ever again.  Since that day he is as indifferent to that spot as he would be with any other strange spot.  So on that day, at that very spot, what or who did he recognize?  His Great Grandmother, who was alive for the first couple of years of Tyler's life, is resting there.  She loved him and felt deeply sympathetic toward him.  Did she come to check on him, tell him one more time that she loved him?  

Only Tyler really knows....and as always....he ain't talking!

New Viewers

Good morning to all of our friends inside and outside of the US!

Being a caregiver, especially to special needs children, has challenges that knows no borders.  The joy, pain, triumph, and loss is the same regardless if you read this from China, Russia, Brazil, or New York.  

For whatever reason there has been a substantial jump in viewership over the last few weeks.  Whatever brought you here I am thankful you came!  

Please feel free to read all you like.  Comment (politely please) if you have questions or opinions about what we do here.  The goal is to touch a part of those of us who dedicate ourselves to the care of another person.  Perhaps you can find the love and inspiration to move forward or break through whatever challenge you are facing.

Welcome.....and enjoy.   Tom

Scary Halloween Story

It's not a story about ghosts or vampires.....it's....it's.....autism on Halloween!!!  Boo!

A perfectly understandable yet ridiculous habit we had in this house was to think through our own eyes where it came to things like Halloween.  Of course we wanted our child to have "normal" experiences and this was no exception.  

So here is what WE thought:  Let's get a really cute costume for Tyler and put him in it. Then we will walk him up to the neighbors door, have him knock and say "trick or treat" and he will get some candy.  We can take some pictures and make sure the relatives see him in his cute outfit.  He will love getting outside and seeing some people!

Here is what HE thought:  WHY ARE YOU PUTTING THIS STUPID THING ON OVER MY CLOTHES?  DON'T EVEN THINK OF PUTTING THAT MAKE-UP AND HAT ON ME.  IT'S NIGHTTIME AND I HAVE NO BUSINESS WALKING ON THE SIDEWALK WITH MY POOR BALANCE WHEN I CAN'T SEE!  KNOCK ON THIS DOOR?  AND....THEY ANSWER AND WE DON'T GO IN?  SURE I WILL HAND THEM MY PUMPKIN.  THAT'S NOT RIGHT? HERE IS A KICK TO THE SHIN TO REMIND YOU I HATE NOT KNOWING WHAT I'M SUPPOSED TO BE DOING!!

Every year this lasted about 3 houses and we all had enough.  And the next year we wrestled with the question of whether to do it all over again.  I'm not being too hard on us, after all we were just trying to give him everything we could.  Our intentions were right.  Our heart was in the right place.

But we were really missing the point.  With the autism spectrum it's most important to see the world from their eyes.  Either do something they will truly get some reward from, or make them comfortable while you do something you want to do, or don't do it at all.  We were doing the classic "jamming a square peg into a round hole" which served no one.  In retrospect we were concerned with what we felt we should be doing rather than what was really making sense for him.  Obviously no permanent damage done, but it is definitely a metaphor for life on the spectrum.

The important lesson is that you will be happier and the loved one you care for will be more happy if you follow that rule I wrote a minute ago:  either the activity should fit their wants/needs, they can be comfortably maintained on the perimeter of the activity, or you don't do it at all.  That said, I am NOT discouraging trying new things!  I'm saying if you have tried something and it is obvious that the activity falls outside of their emotional, mental, or physical ability, refer to rule I suggestes above.

Be well, God bless, and have a great spooky season!

Tyler Update

Good afternoon!

The dreaded months are here....cold, wind, snow, and Tyler's historic behavior decline. October until about March has always been rough on Ty.  From my understanding he is not alone in this.  I have even seen suggestions that seasonal depression can be a significant factor with people on the autism spectrum.

Fortunately....and I knock on wood....Tyler has not shown as much of a tendency toward this in his new home.

Could it be because it is new and more stimulating for him...perhaps.  Whatever the reason we have seen much less of it.

The bottom line is that he continues to do very well both at home and in his outside environments.  We are hoping that another visit is going to be arranged in the near future, as well as making plans for him to see us for a little while at Thanksgiving during the family dinner.

Here is to hoping that all of us as caregivers, and all of those being cared for, have a smooth winter season WITHOUT the blues.

Be well and God bless.  Tom

Read This One

Good morning!

If you ever feel like you need a reason to believe in the good that can be found in young people......read this one.

Tyler spent the better part of his school career in the district's middle school.  Even as he neared graduation he was allowed to stay there because his size and development level was a better fit for that age range.

One thing they offered the students was an opportunity to volunteer some of their lunch period to play basketball with Tyler.  Every year we were all pleasantly surprised at the amount of interest from the students.  After all, these are kids of the 11-13 age range and not necessarily mature in charitable thinking.  

We know Tyler loved the interaction with his peers, but we also saw evidence that being with Tyler touched these young people as well.  One such young man gave Tyler a nice note which was placed with a  basketball picture frame.  The note was from this boy's heart:

"Dear Tyler and Family,

Tyler is a great kid and has grown so much since I met him.  It has been an honor working with Tyler throughout the year.  We had great times together and a little friendly competition. These times will be treasured in my heart forever.  I would like to tell Tyler great job not giving up.  I know things like his disabilities are giant obstacles and he got around them this year.  Lastly, keep up the good work making those hoops Tyler!"

The young man said he was giving the picture frame to Tyler so he could have a basketball picture in it.  We placed the boy's note in it instead.  We could think of nothing more special that deserved to be displayed.  

This note has followed Tyler to his new home and is displayed in his bedroom.  Perhaps Tyler can't read and appreciate it like we can, but having that kind of heartfelt love and respect close to him is a wonderful thing.  And a wonderful gift by a thoughtful young man.

Be well and God bless.   Tom