Tuesday, May 31, 2016

Tyler Home Visit

Good morning!

We had the pleasure of visiting with Tyler yesterday at his home.  This was the first visit we conducted in his new living space, so we were a little nervous about how he would feel about us being there.  But we also saw this as a step forward in our assuming our new role in his life.

He was happy to see us we could tell.  However, he had a level of discomfort during our entire visit.  It is the same discomfort that he would have during his school days when we would visit him there.  The feeling we get from him is "I love you and am happy to see you but this is my space for other things and you aren't suppose to be here".  So during much of the visit he quietly did his activities and only acknowledged us occasionally.  It was when we went to leave that Tyler got more talkative and happy!  

We know him well enough to understand this was not a slight on his part.  It has nothing to do with how much he cares about us or wants to see us.  It has everything to do with him feeling comfortable with people in their proper perspectives.  In this case it is actually a GOOD thing that he feels this way.  It means he has claimed the home as his home environment, his comfort zone, and his personal space.  Even if it makes us feel a little sad on a selfish level, this is exactly what we need things to be.

Other than that he certainly looked good.  His weight is good and he is very clean and well groomed.  The home is spotless and organized and continues to be a warm and comforting environment.  There is no doubt that he is happy there.

I've included a few pictures below for your enjoyment.  Be well and God bless.  Tom

Sunday, May 29, 2016

I Hate the Curveball!

Life is about dealing with good things and bad things.  Sometimes we all get the pitch we are looking for and knock it out of the park.  Other times we get the curveball and we have to adjust our swing.  Here is the problem...


But those of us with special needs children understand that any change can be devastating.  Rules change, laws change, staff members change, caseworkers change, and so on.

Case in point, since Tyler moved in to his home 6 months ago everything has been quite stable.  However, here comes the stinking curveball.  Tyler's main day program caregiver has suddenly left the program.  This is a loss for Tyler because this individual was very dear to him and he was making a lot of positive progress in large part because of that relationship.

My first reaction was to mourn this loss.  And when I say I mourned I mean I cursed and kicked at the dirt and shoke my fist.  After all we had things working and now we had to make more adjustments. So now the oceans had just all overflowed, the moon had just crashed into the earth, California broke apart from the US, and beer would now be illegal again.

Only none of that was true.  And my next reaction was to get busy and dig in.  After speaking with this wonderful caregiver it was time to take action.  I first sent emails to the rest of the team to be aware of the change and to watch for possible behavioral reactions.  Next I called the day program to be sure the departure did not involve Tyler in any way (it did not) and to request that any effect on Ty be communicated to the team.  I felt we had covered the bases.

This is where an earlier discussed strategy pays off...having a diverse team.  Tyler does not rely on one agency or one person for every need.  His world is full of great people with different areas of responsibility.  As such, this kind of loss, while upsetting, can be recovered.  Just as important is choosing programs that have good groups of people so that a Plan B is always possible.

I still hate the curveball.  It's cruel and unfair to us and those we care for.  But they a fact of life.  And the message tonight is to continue to keep your team diverse, and when the curveball comes don't waste much time being angry.  Instead, use that energy to take action.  Communicate with your team and relay any concerns you may have.  Make any expectation clear.  If you have a good team they will take over from there.

It's ok to hate the curveball....but you still better be prepared to hit it.

Be well and God bless.  Tom.

Friday, May 27, 2016

Meeting New Friends

Good Morning!

Again I apologize for not being able to update often lately.  My job has taken me to 10 cities in the last 5 weeks which I find is not a great environment for creative blog thought. Hopefully as my schedule gets back to normal so will my entries.

I'd like to shout out to some people that I met this week.  I find it amazing how many people out there are experiencing many of the same things that I have experienced.  Equally as interesting is the enthusiasm that most of these fellow caregivers have about sharing their stories as well.  The conversation is always engaging and leaves me with a sense of comfort that we are not alone in our journey.  

Even though I often preach that it is important to reach out to others, I find that at times I do not do this as often as I would like.  This week reminded me that I need to be better aware of that.  You see, I do believe that our experiences "speak" to us and we need to be sure to slow down and keep our ears and eyes open to them.

I want to share my experiences with 3 different people this week.  All from different places and with different stories, and yet we were also all very similar in our love for our special children.

First I met a co-worker, Stacy, who has a special needs young man that she cares for.  As we talked I found myself admiring how deeply she cares about her young man.  Her loyalty and passion for caring for him came out of every pore as we spoke.  As with probably all of us, she talked about the struggles with a system that is often not very well suited to aid in special needs care.  But she has incredible courage and love in her heart which takes her a long, long way.  And as with many of us I believe that she struggles to live outside of her current situation.  Talking with her is inspiring with a tinge of sadness.  I truly wish that she reads this blog and it brings her comfort, courage, and hope.

Then as I sat in the airport waiting for my delayed departure, I struck up a conversation with a girl younger than I who happened to be a special needs teacher.  We talked about how the school systems can so often be "one size fits all" when these special needs are anything but!  We talked about how as parents there are too few educational and support resources. We even sat and drew some inspirational cards together as we talked.  She probably will never hear this as many times as she deserves to....but thank you for what you are doing for those children and families.  You DO make a difference.  It is the kindness of good people like yourself that are the lifeline in which many of us cling.

Finally I sat beside a gracious lady (I'm ashamed I did not ask her name) on the airplane. For a time we tended to our own business but with an hour left in the flight we found ourselves talking about various things. We quickly realized we both have autistic sons of a similar age.  For an hour we shared our anxieties and fears, but we also shared the things that we love about our children, and the hope for a better life for them and the family.  Her strength was obvious in her demeanor.  I found her to have an intelligence and compassion that I rarely come across in my travels.  And yet when talking about the future she melts back into that stare into the abyss that we all know so well, and the feeling of helplessness we all have felt.  

For each of these 3 wonderful people I wish you the strength to continue on.  And I wish you the courage to continue to look for what those children need and to be the hero you are for them today.  I hope you read this blog and it brings you some direction and comfort.  You are not alone no matter how much it may feel that way.

So as you see my friends, there are so many of us with the same joys and struggles.  In 4 days I came across three "strangers" who shared their lives with me and vice-versa. Don't ever stop sharing your story or listening to the stories of others.  One chance encounter may be inspirational and the very message you needed to hear.  As a very dear friend of mine and I always say, life and love speak to us often, its a matter of whether we listen.

Be well and God bless.  Tom

Sunday, May 15, 2016

Tyler Update

Good afternoon.  I sincerely apologize for not posting for a few weeks.  I am currently visiting facilities in the Midwest as part of my job.  The travel has been fast and furious and I'm just trying to keep up with everything.

Ever since Tyler visited the hospital a few weeks ago he has been steadily improving.  One test has now shown that he has a UTI which they are currently treating.  The home has also increased his fiber intake to aid his digestion.  Right now the team has decided to use medications and diet changes to resolve the issue.  If he continues to have periodic digestion issues we can always consult with a Gastroenterologist as needed.

The great news has been how well Tyler continues to get along with his staff and his housemate.  The young men are now learning to share some activities together.  Tyler is even sharing his wii bowling game which is an awesome step forward.  People are also reporting that Tyler is now talking a lot more, perhaps because he is picking up queues from living with another young man his age.  With his health currently in check and his continued enjoyment of his surroundings, it seems he is eager to experience more and more of this new lifestyle.

With each of these meetings and reports my wife and I continue to accept that Tyler is happy now and in many ways doing better than ever.  This is what we wanted for him more than anything.  But I would be lying if I said we don't feel a sense of sadness about that.

Now that Tyler has successfully completed 6 months in his new home, we feel everyone is ready for Robin and I and Samantha to be more present in his life.  We will still gauge his emotions and proceed carefully so as to not confuse or overwhelm him, but we never want him to lose his sense of belonging to his family either.  It feels like the right time to expand our new role in his life.  It sounds like our first visit to his home (with him there) is going to be in a few weeks.  Hopefully he will be happy to spend that time with us.

We continue to be so proud of him.  He has bravely taken on the biggest challenge of his life and found the way to not just survive, but to thrive.

Be well and God Bless.   Tom