About Tyler

Even before Tyler came into this world in the winter of 1992, my wife Robin and I (each the ripe old age of 21) had been informed that Tyler’s brain had not developed properly and that his prognosis for life, and certainly a “normal” life was not very good.  Even if he survived to be born, the probability of severe disabilities was almost certain.  For Robin and I there was no need for discussion.  Tyler would be given the opportunity to live his life in whatever way that meant, and we would love him until the end, whatever that would mean.

Tyler did indeed survive until his birth but within minutes he stopped breathing and had to be revived.  On his second day he would face brain surgery to relieve the fluid pressure in his brain.  It was obvious from the beginning that Tyler had a strong fighting spirit.  In about a week, we all left the hospital and headed for home.  Before I could get my coat off, he and I were curled up sleeping on the couch.  And in many respects this was how things would always be - we would face the many upcoming challenges knowing that somehow we could get through it and make him comfortable once again.  Over the years we would encounter many surgeries that included shunt revisions, eye surgery, hernias, and even a bowel resection.  But each time we would fight on until we could rest once again.

It seemed at each expected milestone we fell further behind.  He crawled in good time, but sitting up was difficult because his core strength was so weak.  We worked with therapists very early on trying to help strengthen him.  Speech was generally one word which was difficult for others to understand.  He didn’t walk until he was nearly 3.  And he could not move his bowels in the toilet until he was 13.  And yet regardless of these delays, there always remained a hearty spirit.  He made up for his physical limitations with a contagious and robust personality which continues to serve him well even now.

Tyler has a smile and a laugh that makes you smile right with him.  He loves to feel that he has pleased someone else and will encourage you to pat him on the back and offer an enthusiastic word.  He loves to play basketball (he is quite an accurate shooter), roll bocce balls, and especially take walks with me.  We walked all the time regardless of where we lived or what we were doing.  This is a theme that you will find often within the blog.

Unfortunately one of his most profound challenges came in the form of his aggression, especially toward Robin.  He can also be aggressive to nearly anyone else given the situation.  When fear or frustration strikes, you can expect anything from a kick to the shin, to a pinch, scratch, or swing of the fist to the arm or shoulder.  Or he may seek out one of the dogs and hit them over the back with his hand or a musical toy.  Another favorite is to kick inanimate objects such as the base of a wall, appliance, or door.  And the more reverberation noise the object would make, the better.  During extreme duress such as during a medical procedure, ALL bets are off.  He can go into full defense mode where he can bite, head butt, and do whatever he feels necessary to protect himself.

Tyler truly lives within the moment he is in.  Because his cognitive skills are extremely limited, and his ability to express his needs is limited as well, he must have 24 hour care.  While he is able to assist in his own care, such as clean himself with assistance, dress with assistance, and eat food properly prepared for him, his caregiver must ensure all preparation work has been properly done.  A caregiver must anticipate all dangers for him since he is not capable of that skill.  So food must be brought to a safe temperature and cut into manageable pieces.  Shower water must be tempered properly for him.  Medications have to be counted out and given to him to take.  Even during simple walks, his caregiver must be looking ahead for upcoming hazards.  This is just the level of care he has always needed.  And obviously as he became older, and we became older, we felt it was time to secure a more long term solution for everyone.

Just a few months ago Tyler was given the opportunity to move into a small home run by a very loving and caring agency.  Even though the process happened more quickly than we expected, we could tell it was the right opportunity for him.  And so far, the adjustment has exceeded our expectations.  Apparently he is enjoying a sense of independence with his new routine.

That brings us to the beginning of this blog.  My hope is that through our experiences and stories you will get to know who Tyler really is.  But just as important, I hope that he continues to provide us the lessons that allow us all to be the best parents, and people, that we can be.  He has taught me so much more than I may ever truly know, and hopefully he can do the same for others here.

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