Tuesday, July 23, 2019

My Brother and I

My daughter, budding dancer and artist extraordinaire, has asked to share some thoughts on growing up with her autistic brother.  So, I turn over the computer to her....and hope for the best:

Hi again my name is Samantha. And i am Tyler's sister and today i will be talking about how i feel about having a autistic brother and how i lived for 4 years with a brother like that. And to start i what to talk about is going on trips and having him on trips was great because now i don't get to do that and the best part was when you go in the wheelchair lane you get right on and i love how the people at Disney made sure he got right on because they knew what he had and now i give a big shout out to the people that did that for my brother so thank you. and i do like doing that with my brother because it is a family moment with all of my family together and i love being with my family and when we used to go to the beach together i would the same thing he would do he would take a shovel and dig sand and throw it over his shoulder and i would do the same thing and it was fun all the time to spend time with him and having a brother is really nice because some people don't get siblings and i am one of the lucky ones that get to have a sibling now some people might be saying that was it hard to bring him on trips well yes it is it is hard for all of us because we all need to keep our distant because he tends to get figity  when people crowd him so that's how he gets and i have a message for you to remember and this is coming from me a kid who had experience that never judge a book by a cover because when you do that people kinda feel what your saying and it is mean to do that and that is why i now what you to know that when you see people like Tyler don't judge him he can't help that he has what he has and when i am at like Disney i feel like people are staring at him and i don't like it when people do that because it is wrong to do that and that's why i want you to appreciate these people who are going through this and you might not know but these people are trying and when people laugh at them they feel bad inside and we don't want people to do that so when ever you see someone talking or laughing i want you to step up for whoever it is you need to step up for them because that is the right thing to do and that's what i want you to do because these people can't fight for themselves so my message is that you don't judge a book by it's cover and i want you to stay beautiful, awesome, and loving  and be nice to everyone you meet and no matter where you live there is love in the air and that's why be nice anywhere you go and to anyone you meet so love you Tyler and bye for now .

Let's review.  First it appears we need to work on punctuation (any would be helpful!).  I wasn't sure about her loving Disney for the perks of skipping lines, but glad she recovered by shouting out to the Disney employees for making sure Tyler was so well taken care of.  What strikes me the most is that she is THANKFUL to have a brother, even one who made things more challenging for her.  She obviously wants everyone to treat their fellow man with kindness and respect, which is one thing that I truly love the most about her. 

We can learn a lot from the eyes and heart of a child.  Maybe she is telling us the greatest 3 things we can all do....all in one glorious run-on sentence:
1. Enjoy every little moment with your family
2. Be thankful no matter what challenges you face
3. Be kind and love everyone no matter what their "cover" might look like

Pretty profound stuff.  Thanks Sam.

Be well and God bless.   Tom

Monday, July 15, 2019

You Have to Find Hope

Friday's post was pretty difficult.  I think it shows how defeating it can be when we watch our special person struggle.  

I will be the first to admit that I have a pattern to how I handle the emotions of Tyler's struggles.  Once the day's battle is over, I become very introspective.  Usually this leads to a short period of feeling extremely sad and in despair.  As sad as I become, I have learned even then to keep a certain perspective.  I remember that every extreme low (and extreme high) is only temporary.  I also remember that Tyler and I will always have each other and that regardless of how bad things could ever get, there is nothing more important.  

One point I want to be clear about, I think as long as all of us know how to keep proper perspective, it is very important to follow through with those emotions.  After I wrote the last post Friday night, I texted my Nephew and his wife and invited them over to swim, have a pizza, and drink a few beers.  We shared some laughs and then we sat around the fire pit and exchanged woes.  His wife is experiencing some family-related problems on her side of the family, and my Nephew has some issues happening on his side as well.  It seems we all have sadness we are carrying around.  By talking about them we validated them and gave them a place in our order of things.  We certainly didn't solve anything, but we allowed ourselves to open up and talk which is worth its wait in gold.  

If you find yourself unable to deal with your emotions, or you are having thoughts of harming yourself or someone else, please make sure to contact a doctor or crisis prevention specialist right away.  

The remainder of the weekend was spent with family and church.  I did a little power washing, some grilling, and visited some friends who love to play cornhole and have a good time.  Does it make everything just go away?  No, of course not.  But each person who gives a word of encouragement, or a prayer, or a hug, or even just asks how we are doing is making it just a little easier to continue moving forward.  Instead of being overwhelmed with the helpless feelings, I get to also feel the love of others.

So to Dan, Megan, Mom, Dad, Pam, Andy, Mike, Molly, and Rob....thanks for making me laugh....thanks for needling me...thanks for the pats on the back and the hugs.  Thanks for sharing your trials with me, and listening to mine.  And thanks for just being there the last few days.  It placed me back on my feet and ready to keep going.

Be well and God bless.   Tom

Friday, July 12, 2019

Little Boy Lost

I would love to be able to spread happy news.  I want this blog to be about improving our lives and how others can do the same.  That wouldn't be the reality of what we do as caregivers.  Unfortunately we seek answers to questions we don't understand, and once we think we have an answer, the questions change.

Then there is the heartbreak.  I sit before you with this sadness that I cannot begin to describe.  Its a sadness that is consuming to the point that it drains me emotionally, mentally, and physically.  I'd rather deal with anger, at least anger makes me feel motivated to fight.

We were able to get an emergency appointment with Tyler's psychiatrist today on short notice.  I was able to make myself available whenever the call would come in with a time.  At about 10:30 am I was told we could be seen at 12:30 pm.  For this appointment I would have attended at midnight if I had to.  Even if it were being held on the moon.

The appointment went fine.  I walked away feeling as though we had a plan of action.  What made me feel so incredibly sad was looking at Tyler's demeanor throughout the meeting.  He was withdrawn from everything.  It looked as though he wanted to put himself a million miles away.  He barely acknowledged me.  If anything in the world ever pulled him out of a dark place it was our relationship.  The only time I ever saw him like this was when he would be hospitalized and he would withdrawal as a defense mechanism.  I was able to get very little feedback from him at all.  He left the room when it was over without even a glance in my direction.

Is his demeanor because his medications have put him into a sedated fog?  Is he depressed and feels that I have abandoned him?  Has he lost the will to fight for himself and simply wants to be left alone?  Or is there a long term medication effect happening that is altering his mindset?  Nobody can tell for sure.  The world of the non-verbal doesn't allow for many clues.

Our hope is that by reducing a medication that has the possible side effects of sedation and confusion he can get some clarity.  Maybe he will feel more energy or more aware of his surroundings.  Maybe he can get some spark back.  Its a guess basically, even by the experts, but this is what the team has decided to try.  For his sake, I hope this clears some cobwebs so that Tyler can shine through again.

Be well and God bless.    Tom