Managing Expectations

Good Evening!


One day back in 1991 I found out that I was going to have a son.  At 21 years of age I thought about how I couldn't wait to teach my son how to catch a baseball, ride a bike, and all of the things that every little boy is taught to do.  

By the end of the year those expectations were replaced by much less encouraging ones. Suddenly we were wondering if our son would survive until his birth.  We were told that if he did survive he would likely have profound physical and mental disabilities.  He would likely never walk, never talk, never lead a normal life.  We had gone from expecting the very best to expecting the worse.

Throughout the years our expectations changed often.  Sometimes it depended on the doctor we were talking to, or the teacher, or the friend or relative.  There were doctors who felt he would never walk, but he did.  There were specialists who felt he would someday break away from autism and lead a fairly normal life, but of course he did not.  Every new medication brought the hope of more consistent behavior.  Every new therapist carried the hope for success and the fear of failure at the same time.

After some time we learned that managing expectations is a healthy aspect of living as a special needs family.  We learned that we couldn't expect Tyler to sit through a 5 course dinner at the Froo-Froo-Poo-Poo-Restaurante, but we could expect that he could last through a one hour meal at the local pizza place.  We couldn't expect him to ride on a school bus with 40 kids, but we could expect him to ride in a van with 4.  

To me expectation has to reside between capabilities and goals.  Both sides of the equation have to be given an equal amount of consideration.  If expectation rests directly on capability, all progression will stop.  Unfortunately (and unintentionally) this is exactly where we placed Tyler after he finished high school.  We expected him to continue to be who he was without placing additional expectations on him.  His growth stalled and we knew it was happening.

If expectations are placed too close to the goal, they may wind up being unobtainable in the end.  This can lead to frustration for both the special needs person and the caregivers.  The result could be a regression instead of progression.

When Tyler was placed in his new home environment he was observed closely so his capabilities would be understood first.  At that point the goals began to be set.  And the expectation placed on him was that he could take one step toward that goal.  He would simply be expected to take one step forward.  As a result, Tyler continually feels a sense of accomplishment and growth without the pressure of being something that he is not.

It is perfectly normal to struggle with the roller coaster of expectations.  It is important to not allow the highs to take you to unrealistic places, or let the lows bring you too far down.  The better strategy is to define expectation as "what is the next step forward?".  Keeping things manageable and realistic will encourage growth without the risk of frustration.

Be well and God bless.   Tom

Fathers Day

Hello Everyone!

First I would like to again apologize that my posts had become somewhat scarce as of late. Traveling for my job was pretty heavy for quite a while, but now things are going to settle enough to get back into the routine.  I was very blessed to meet a lot of new people and see a lot of new things.

Secondly, I want to say "Happy Father's Day" to all of my Dad followers out there!

I did not see Tyler on Father's Day this year, but like with all holiday's, the sentiment is a bit lost on him.  It did, however, cause me to reflect on what being his Dad has meant to me and I wanted to share those thoughts.

I became Tyler's Dad at the ripe old age of 21.  Like nearly all men of that age, I was barely able to take care of myself much less a special needs child.  What I did know was that I loved this little guy and I loved being his Dad.  It didn't matter to me that he had special needs and that he may never have a "normal" life.  All that mattered was that I wanted him to feel like he had a family that loved him and a Daddy that would always be there to hold him.

After a week in the hospital we brought Tyler home.  The very first thing he and I did before even getting our coats off was to fall asleep together on the couch.  As long as we were together and as long as we had each other, we could face anything.  From that moment on he would know that I would be the rock he could always lean on.

As the years went on, we faced triumphs and challenges as a family.  Through it all, Ty and I have had an incredibly close bond. I have spent endless hours comforting him after seizures, or his stomach issues.  Endless days and nights spent in the hospitals being his voice to be sure he had everything he needed.  Despite his limited understanding I always felt he knew that as long as he could see me and feel my presence that he would know he was ok.

Even today as I reflect on our lives together, being the Dad to our children is the most wonderful experience of my life.  Despite all of the challenges my mind always goes to the best moments.  I think of the times walking on the beach together.  I hear his laugh when I did something goofy and funny with him.  I remember the trips to Disney where every once in a while we could feel like a "normal" family enjoying ourselves without a care in the world. I think of the walks we would take in the park.  I think of the endless bocce games.  And most of all I think of the countless little moments when Dad and son connect in their own personal way.

 

Now Samantha has her time to connect with her Dad, and many years of creating memories with her.  She is so bright and full of life and I look forward to every moment with her.

To me, being a Dad is the greatest gift I have ever been given.  When I feel the love of my children and watch them grow and accomplish things I feel a joy that overwhelms me.  It is a gift that I will always, always cherish.

Be well and God bless.

Tom  

Tyler Update

Good Afternoon!

All reports are that Tyler is currently doing very well.  He had the curveball last week of losing a trusted caregiver at his day program.  However, they have reported that he is adjusting well and continues to be cooperative and make strides forward.  This is a good sign for him that even when we lose a staff member he can keep a positive outlook.

Tyler is also continuing to do well at his home.  One thing that we really like about his home staff is that they are constantly looking to expand his boundaries, even if just by a little bit. They have goals for him and even if they try the smallest of baby steps forward, they look for progress.  

For the most part Tyler accepts his new challenges.  For the most part.. that is until they asked him to get in the pool today:

Let me translate that face for you...."I won't be doing that no matter what you say!".  LOL.

But we remain thankful for his continued good health and happiness.  We have been truly blessed by his remarkable courage and strength!

Be well and God Bless.   Tom

Vacationing

Good afternoon!

I have found this to be a very challenging post to write.  Last Saturday we embarked on our first trip to the beach since Tyler's moved to his new home.

The first point to make is that we really missed Tyler being with us.  The beach and the water make him smile and laugh in ways that we rarely saw anywhere else.  Tyler is also a good "shotgun" partner in the car on such long trips.  We talked about him a lot especially during the evenings when the sun would be going down and the beach would be clear. Tyler loves wandering the edge of the surf and feeling the ocean breeze.  We also talked about how he loves to sit at the waters edge and toss sand into the water for hours on end.  It was comforting to think of these memories of our many trips to the beach with him.  It would be so great if we could bottle up those good little moments and open them any time we wanted. If only it worked that way...

What makes the post difficult to write is being willing to admit that it was an extremely relaxing vacation.  It feels as though that is a disparaging comment about Tyler which of course it is not.  Vacations were always good, but a lot of work and stress.  Every single detail had to be planned just right to keep the world in balance.  An unexpected event could lead to real trouble and a potential danger to him or others.  And we always worried that Tyler could inadvertently cause damage to the condo or bedding.  It was one part fun and two parts walking on egg shells.  As Ty has gotten older he has enjoyed it less when his routine is interrupted.  Often by the end of the vacation he wants nothing but to know he is heading home.

This year was obviously different for all of us.  I am especially happy for Samantha that she was able to really relax and do some things on her own terms.  She enjoyed being a carefree footloose seven year old!  She ate in restaurants, played mini golf, and made a new friend on the beach that she played with every day.

I would say overall it was part of this decompression process since November.  Tyler is still learning how to be an independent young adult, and we are still learning how to live without the challenges of daily autism life.  It really is about finding a new balance and it isn't as simple as one might believe it to be.  But knowing that Tyler is secure and happy is allowing us to explore our new circumstances.

Be well and God Bless.    Tom

Leaving Comments

Good Evening!

We have discovered that comments are not currently coming to me.  We are not sure how long this has been happening but we are working on resolving the issue.  If you would like to ask me a question, offer a comment, or discuss the blog please email me at Tom300824@verizon.net

If you have asked a question or left a comment in the last 30 days please email me.  Tyler and I would love to know how you are doing too!

Be well and God bless.  Tom