I hope that I'm good at being thankful all year long for the many blessings that I have received in my life. That being said, this is the time of year that we are reminded to reflect on how fortunate we are for even the most simple of things. We should also think of those who are struggling and in need.
We will be heading to my in-laws tomorrow as is our custom. I am particularly blessed with such wonderful family to spend so many of these holidays with. Despite there being less than 10 of us, there is enough food for a week's worth of leftovers. After dinner we partake in some penny poker and no matter where I sit my mother-in-law gets all of my good cards. Of course we enjoy the turkey, pumpkin pie, and football, but the day is really all about being together. It's about relaxing, pretending to seriously argue about nothing, and sharing the love we have been so blessed to receive.
We made the decision that Tyler and a staffer will join us. We are so happy that he is far enough along with his new home that we can consider having him come for the meal. They will come right as we sit down and if all goes well he will stay for a little bit afterward. But if he feels uncomfortable we will allow him to eat and run. We feel its important that Tyler have the ability to feel his family around him during the holiday season. This is just the first step to see how well he does or doesn't do. If it goes well we will know we have one more option for the future.
We all have stresses in life, and we all experience loss. Its part of life. Many of my readers experience tremendous struggles and pain to which we sometimes cannot see the right answers. So when you read this I want you to clear your mind and say out loud all of those little things that you have to be thankful for. Here is mine:
Today I am thankful that I am alive and relatively well. I am thankful that I have biological family, married family, and non-biological family that share their love with me. I am thankful for Tyler's health and happiness and all of those wonderful people who look after him so well. I'm thankful that I have employment and can provide for my beautiful wife and daughter. I'm thankful for Robin, Sam, Jack, and Stitch who are there for me whether I am right or wrong, good or bad. And I'm thankful for co-workers, neighbors, and friends who are willing to laugh with me, and cry with me. Most of all, I'm thankful for the blessings, grace, and mercy given to all of us by our Lord.
No matter what our struggle is, there are things to be grateful for. Find those today and place them close to your heart.
Be well and God bless. Tom
Wednesday, November 23, 2016
Tuesday, November 15, 2016
The Holiday Season
The holiday season can be a particularly bitter-sweet time of year for families with special needs. Most of us grew up enjoying the time of year with its gatherings, and traditions, and pageantry. We have very strongly conditioned ideas about what things should look like.
That narrative doesn't usually fit into the special needs world. Tyler does not have the same perception of those important tokens of our perfect holiday imagery. This is where the clash originates between imagery and reality. I felt like I owed it to Tyler to share that holiday joy the way I knew it to be. Actually I felt the responsibility to make sure Tyler experienced more tradition and joy than I had experienced before. After all, isn't my job as a parent to give my child more love and security than I had ever known? I want to be the model for which my children learn how to be spouses and parents.
However, reality has it's own plan, and in many ways it doesn't pay any mind to those simple ideals. Rather it demands compromise and understanding. It requires us to look through the eyes of that special person and rearrange what is really important. This is often a sad undertaking. Its hard to let go of how we want things to be.
As a youngster Tyler seemed to enjoy Christmas. We have old video footage of him ripping into gifts or screaming gleefully at a new toy. One such time was when Santa brought him a ball pit and he ran straight for it and lunged in amid squeals of joy. But as we have learned so often happens with autism, he became less interested in new things as he became older. Gifts would often remain under the tree unopened for a week because he had no interest or would become angry when presented to him. Often the changes in weather and routine would cause him to become more surly and difficult to manage. Trust me when I say, it is a sobering reality when you have to open your child's presents yourself before taking the tree down.
Those with loved ones with special needs likely know the feeling of WANTING to look forward to the holidays but suddenly thinking about the difficulties it brings with it. To you I would like to offer this advice from someone who has been through good ones and bad ones:
B-A-L-A-N-C-E. Tradition, gatherings, and pageantry have their place and should never be abandoned. They are extremely important to us. But we have to see them through the eyes of our special loved one as well. Find as many ways as you can to integrate BOTH into your lives. Evaluate what works during your normal days and incorporate that into your holiday. Tyler did not do well at other's homes for gatherings but was well managed at home, so we would have holiday parties at home where we created activities and foods that became tradition. Tyler liked car rides so every year we drove the neighborhood looking at lights with some friends. If you can manage to have a respite evening with your spouse, find a holiday meal somewhere and spend one evening relaxing. Find new ways to decorate that are festive but do not threaten the sensory limitations of your special person. Tyler didn't like to open gifts so we began to buy him one special thing to open. We had to let go of that feeling of "if I don't buy him 10 great things to open I'm a bad parent".
What is important about this holiday, and every holiday, is that there is love. Love is the greatest gift we have been given and the greatest gift we can give to others. If we can be together, and we can love each other as a family in our own special ways, we have gifts that are so great that no wrapping is necessary.
Be well and God bless. Tom
That narrative doesn't usually fit into the special needs world. Tyler does not have the same perception of those important tokens of our perfect holiday imagery. This is where the clash originates between imagery and reality. I felt like I owed it to Tyler to share that holiday joy the way I knew it to be. Actually I felt the responsibility to make sure Tyler experienced more tradition and joy than I had experienced before. After all, isn't my job as a parent to give my child more love and security than I had ever known? I want to be the model for which my children learn how to be spouses and parents.
However, reality has it's own plan, and in many ways it doesn't pay any mind to those simple ideals. Rather it demands compromise and understanding. It requires us to look through the eyes of that special person and rearrange what is really important. This is often a sad undertaking. Its hard to let go of how we want things to be.
As a youngster Tyler seemed to enjoy Christmas. We have old video footage of him ripping into gifts or screaming gleefully at a new toy. One such time was when Santa brought him a ball pit and he ran straight for it and lunged in amid squeals of joy. But as we have learned so often happens with autism, he became less interested in new things as he became older. Gifts would often remain under the tree unopened for a week because he had no interest or would become angry when presented to him. Often the changes in weather and routine would cause him to become more surly and difficult to manage. Trust me when I say, it is a sobering reality when you have to open your child's presents yourself before taking the tree down.
Those with loved ones with special needs likely know the feeling of WANTING to look forward to the holidays but suddenly thinking about the difficulties it brings with it. To you I would like to offer this advice from someone who has been through good ones and bad ones:
B-A-L-A-N-C-E. Tradition, gatherings, and pageantry have their place and should never be abandoned. They are extremely important to us. But we have to see them through the eyes of our special loved one as well. Find as many ways as you can to integrate BOTH into your lives. Evaluate what works during your normal days and incorporate that into your holiday. Tyler did not do well at other's homes for gatherings but was well managed at home, so we would have holiday parties at home where we created activities and foods that became tradition. Tyler liked car rides so every year we drove the neighborhood looking at lights with some friends. If you can manage to have a respite evening with your spouse, find a holiday meal somewhere and spend one evening relaxing. Find new ways to decorate that are festive but do not threaten the sensory limitations of your special person. Tyler didn't like to open gifts so we began to buy him one special thing to open. We had to let go of that feeling of "if I don't buy him 10 great things to open I'm a bad parent".
What is important about this holiday, and every holiday, is that there is love. Love is the greatest gift we have been given and the greatest gift we can give to others. If we can be together, and we can love each other as a family in our own special ways, we have gifts that are so great that no wrapping is necessary.
Be well and God bless. Tom
Sunday, November 13, 2016
"Tired"
Good Evening!
I had a chance meeting this week with parents of a special need boy. Their story was amazingly similar to our story. As we talked they were very open about their feelings, one of those feelings being that they are "tired".
"Tired" in this context has a particular meaning. It means "I've fought so hard for so long. I don't sleep like normal people. I don't go to the doctor like normal people. I can't really complain to anyone because nobody understands. I feel like this is going to be happening for the rest of my life and I'm losing hope for my future and their future. I'm worn out from the anxiety and the worry for my special needs person. And worst of all, I can't let my emotions show because I'm afraid of what they sound like".
This kind of tired is a description of mental, physical, and emotional exhaustion. This was my experience for perhaps the last 3 - 5 years before Tyler moved into his new home. At the time I thought it was just a thing to deal with. Now I realize it was a serious warning sign. A SERIOUS warning sign that must be dealt with.
When you reach this point you must find help from people that are trained to move you forward. What follows is my advice on how to do that.
First, ask yourself what are the 3 biggest needs that you have within the situation. If you are exhausted there are reasons. List the "top 3". Unless you identify and acknowledge the problems you cannot work to solve them. Next, evaluate each need and list who is currently on your team that can or should be helping you with it. If nobody fits the problem, you know you need to add a resource. If those who should be helping with a problem are not effective, you need to exercise your options to make changes. Next, reach out to those resources and clearly express the need and your expectation of what kind of help you want them to provide. Now you can make a plan for each need. If possible set some small goals and then some larger goals. Finally, keep the plan flexible. Just because plan A doesn't work out, and B burned in flames, KEEP WORKING! Sometimes a failure points to a different plan for success.
You may be surprised at how this could jump start some positive changes. It will help you confront your needs openly and express them more effectively. You will also see that by being proactive and having a plan your attitude will become different. There is little that is more poisonous to a caregiver than sitting on our hands hopelessly. If you feel like this has happened, vow to retake control and get a plan in place.
Be well and God bless. Tom
I had a chance meeting this week with parents of a special need boy. Their story was amazingly similar to our story. As we talked they were very open about their feelings, one of those feelings being that they are "tired".
"Tired" in this context has a particular meaning. It means "I've fought so hard for so long. I don't sleep like normal people. I don't go to the doctor like normal people. I can't really complain to anyone because nobody understands. I feel like this is going to be happening for the rest of my life and I'm losing hope for my future and their future. I'm worn out from the anxiety and the worry for my special needs person. And worst of all, I can't let my emotions show because I'm afraid of what they sound like".
When you reach this point you must find help from people that are trained to move you forward. What follows is my advice on how to do that.
First, ask yourself what are the 3 biggest needs that you have within the situation. If you are exhausted there are reasons. List the "top 3". Unless you identify and acknowledge the problems you cannot work to solve them. Next, evaluate each need and list who is currently on your team that can or should be helping you with it. If nobody fits the problem, you know you need to add a resource. If those who should be helping with a problem are not effective, you need to exercise your options to make changes. Next, reach out to those resources and clearly express the need and your expectation of what kind of help you want them to provide. Now you can make a plan for each need. If possible set some small goals and then some larger goals. Finally, keep the plan flexible. Just because plan A doesn't work out, and B burned in flames, KEEP WORKING! Sometimes a failure points to a different plan for success.
You may be surprised at how this could jump start some positive changes. It will help you confront your needs openly and express them more effectively. You will also see that by being proactive and having a plan your attitude will become different. There is little that is more poisonous to a caregiver than sitting on our hands hopelessly. If you feel like this has happened, vow to retake control and get a plan in place.
Be well and God bless. Tom
10,000 Views!
Good Evening!
I am humbled, proud, and honored to report that our blog has reached 10,000 page views. This "Little Engine That Could" effort has found an audience and continues to grow. When I first started the blog (having never done one before) I didn't know what to expect. If someone would have told me I would be crossing 1000 views at this point I would have taken it!
I would like to thank every single visitor to the blog. Whether you come here to be inspired, to keep up with Tyler's updates, or to read some amateur bad poetry I'm glad you are with us. And I hope and pray that it has touched your heart in some way.
Tyler is doing very well once again. At the house meeting this week his staff described him as "having the sillies" lately. That is such great news. Tyler wears his heart on his sleeve and when his mood is silly you know he is very happy.
He also had some of his all-time favorite food this week..........P A S T A!!!
I see this face and smile. And it reminds me that with faith and hard work all things are possible. That if you align yourself with the right people and work as a team you can move mountains. You CAN change your life and your special person's life. It's never too hard and it's never too late.
Be well and God bless. Tom
Thursday, November 10, 2016
Feeling Not Good Enough
I've heard many wonderful things from people. "I don't know how you do it" they say. "You have done an amazing job" they say. So how is it I can feel that I haven't been good enough??
Being Ty's caregiver I learned to analyze every move I made. If something didn't go right I made it MY FAULT. It was a tremendous pressure to put on myself. Case in point:
We were at Disney in Florida and as we were getting off of the Jungle Cruise (which he did not like) he managed to push a little girl. Even though she wasn't hurt and her parents were extremely understanding, I was crushed. I had positioned myself to his rear left to protect the ride attendant who was holding the boat to the dock, and left his front right exposed which is where the little girl crossed. I had failed to keep him from making a mistake and I had failed her because I left her exposed. As his Dad I had failed. It might be easy from the outside to think that point of view is silly, but this is the intense pressure I had placed on myself.
After a while I felt as though I had to be perfect. His well-being and the well-being of those around him demanded nothing less. So given that level of expectation there is only two options: being perfect or failure. That's an impossible standard to uphold. That's an unfair standard to uphold.
There is no true answer. As caregivers we are giving everything we have for our loved one. We never settle for anything but what is best. My advice is to remind yourself that you do not control everyone and everything. Mishaps and mistakes will happen to the best of us. Tell yourself you will apply what you have learned and the mistakes are behind you. Mistakes are actually great things so long as we learn from them. Give yourself a little benefit of the doubt and don't let it drive you to depression or dispair.
God bless you. Tom
Being Ty's caregiver I learned to analyze every move I made. If something didn't go right I made it MY FAULT. It was a tremendous pressure to put on myself. Case in point:
We were at Disney in Florida and as we were getting off of the Jungle Cruise (which he did not like) he managed to push a little girl. Even though she wasn't hurt and her parents were extremely understanding, I was crushed. I had positioned myself to his rear left to protect the ride attendant who was holding the boat to the dock, and left his front right exposed which is where the little girl crossed. I had failed to keep him from making a mistake and I had failed her because I left her exposed. As his Dad I had failed. It might be easy from the outside to think that point of view is silly, but this is the intense pressure I had placed on myself.
After a while I felt as though I had to be perfect. His well-being and the well-being of those around him demanded nothing less. So given that level of expectation there is only two options: being perfect or failure. That's an impossible standard to uphold. That's an unfair standard to uphold.
There is no true answer. As caregivers we are giving everything we have for our loved one. We never settle for anything but what is best. My advice is to remind yourself that you do not control everyone and everything. Mishaps and mistakes will happen to the best of us. Tell yourself you will apply what you have learned and the mistakes are behind you. Mistakes are actually great things so long as we learn from them. Give yourself a little benefit of the doubt and don't let it drive you to depression or dispair.
God bless you. Tom
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