Wound Tight

There are often times that I am reminded that being Tanner can not be easy for Tanner.
Most days, Steve and I are caught up in the daily trials of what it is like to live with Tanner. I don’t always think about what it is like for Tanner to live.
But last night, I was reminded that his life must be frustrating at some times.
Over the past week or so, we have been battling with a finger wound. It started out as a simple scratch on the middle finger of his right hand. Tanner has some type of super sensitivity in his hands and fingers. He WILL not wear a bandaid unless you sit right next to him and hold the hand that the bandaid is on! In a similar sense, the healing process of a finger wound causes some issues for him also. Just when that wound has the perfect scab…..there must be something about it that drives Tanner so crazy that he has to pick it off. And then we are back to square one.
So…..as we have battled with this wound that becomes fresh every couple of days because he has picked off the scab again, we have become frustrated with him. As a result of his finger picking, he does not get to play with his iPad. This royally ticks him off.
And so there is the cycle……and as it progresses, we all get frustrated and I get angry because I cannot understand why he can’t just leave the finger alone.
Sunday night and yesterday, Tanner was pretty agitated. He was talking non-stop and was slightly aggressive with both me and Steve.
Last night I put him to bed at his usual time. Forty minutes later, despite all of his “make him sleepy” medications, he was still jibber jabbering non stop. I was ready to go to bed, but don’t like going to sleep if I know he is still awake. I decided to lay down with him until he went to sleep.
So, you know that time when you are drifting off to sleep and you can feel your body relax…..it does that twitching thing occasionally…..sometimes startling you as you fall asleep if the twitch is sever enough? Well, last night, as he finally started to slow his mouth down and relax a little bit, Tanner’s body began to twitch.
Snuggled up to him, I could feel him finally relaxing as the twitching went on for about 5 minutes. It was then that I realized how stressed he must be sometimes. He gets so wound up and obsessed about a certain thing and the longer his frustration lasts, the tighter he is wound. And I am sure that having an “at our wit’s end” set of parents that are frustrated with him is not easy.
He loves us and I know he doesn’t understand when we are angry with him sometimes. We are his constant companions and best buddies.  I know he knows when he is doing something that he is not supposed to, but he just can’t help himself.  I feel that way about cookies!

So this morning, I tried to be extra patient with him, even when he was up before he should have been and appeared to be wound just as tight as before he went to sleep.  I gave him a lot of extra hugs before he got on the bus and reminded him of my expectations for the day.  DO NOT PICK YOUR FINGER!

I’m thankful for God’s reminder that it isn’t easy to be Tanner.  So even while guiding him and trying to teach him appropriate behavior, I need to remember to be patient and loving.  Not always easy.  But I’ll try my best.

Snow Won’t Stop Us (Part 1)

It’s been a long time since I have blogged, but I just had to write about my trip to the Dallas Stars hockey game Friday night.

Snow hit Dallas hard on Friday!  This presented a dilemma to me.  I had 2 tickets (part of a 10 game package) and was planning on taking Tanner to the game as a fun outing for his birthday weekend.  After driving 1 hour and 45 minutes home from my office early Friday afternoon, I was worried that we would not be able to go to the game.  I knew that DART Rail would be our best option, but I also remembered when the rail service shut down a couple of times due to icy conditions. What’s a girl to do?

After a little research and some soul searching…..along with thoughts of “What is my plan should disaster strike?”, I decided to go for it.  I just really had a feeling that if we got to the arena, we were definitely going to have a good time.  Steve’s last words to me as we headed out the door were, “I am not sure you should be going.” To which I replied, “It will be just fine.”

When we arrived at the AAC, I was happy to see dozens of crazy people just like me…..most of us seemed to have ridden the TRE or the Green line.  I was a little worried what the ground would be like walking out after the game.  Walking and trying to stabilize me AND Tanner can be tricky.  But we were there and I was ready for the game.

If you have ever been to a Dallas Stars game with me, then you know that my favorite part is when the teams come out on the ice for warm-ups.  Fans can get down close to the glass and see the team.  I love to watch them skate and shoot the puck at the net up close.  You can see the emotion on their faces.  Sometimes it’s determination and concentration.  Sometimes they look like little boys playing at something they love.  Sometimes, you can catch their eye.  Once this season, Tyler Seguin smiled at me!

As soon as Tanner and I got inside, we headed towards the ice.  We found a great spot to stand but it was going to be about 15 minutes before the guys came out.  This was challenging……how to keep Tanner happy and engaged while standing in one place.  There is not a lot of conversation from this boy, so I just kept talking.  I got him smiling and then I got him saying the names of all the players.  This is funny because some of their names are difficult.  Like Jokipakka or Hemsky or Sceviour.  All of a sudden, someone tapped me on the shoulder.  I turned around and this man handed me a practice puck.  These are the ones piled up on the bench ready for the warmups.  He said he thought my son might like one. I could tell that he could tell that Tanner was “different”.

I thought that was so nice.  I also knew that I was way more excited about the puck than Tanner was.  But I got Tanner to say “Thank you” and took this cute pic of Tanner with the puck.  Then the man insisted that he take our picture together.

We thanked the man again and then here came the players!  A few minutes of watching and we were off to our seats.

I cannot take the time on this blog to explain my family tree, but I will say that I have a LOT of cousins and they all have kids so there are also MANY more cousins.  ONE branch of the tree is like me…..big hockey fans and so one of them has tickets next to ours. I was happy to see a cousin when we got to our seats.  And my other cousin (Mom of the cousin sitting next to me) texted me to say she was at the game as well!  YAY, more crazy people like me!

What happened during the game?  Did we get home safely?  Stay tuned for the next blog!

Please, Don’t Say It!

In recent days, a friend of mine, who is also the mother of a son with autism, was contacted by an acquaintance regarding posts that she has made on Facebook.  It seems that this woman is concerned that my friend’s son can read the things that she has posted and is concerned that the comments might make him feel bad.  Now these comments are about the challenges my friend has with her son and a bit of sarcasm and venting about certain situations. The kicker here, is that this woman has NEVER met my friend’s son.  BUT, she has seen a video about ONE girl that had severe autism and figured out how to communicate.  And she has had some limited exposure to a few other kids with autism. (Not to mention, my friend’s son cannot read.)

It’s really incomprehensible that someone would have the nerve to give unsolicited advice to a parent of a child with autism, without having any prior experience or having met the child in question.  BUT, this happens more than you know.

Please know that I am trying to say this in the nicest way…..but we, as parents of children with autism, really do not need any advice, suggestions, information about some “new” treatment, etc.  ESPECIALLY if you, yourself DO NOT have a child with autism.  It doesn’t matter if you have a friend, a niece, a cousin, or a neighbor with a child with autism.  You have not walked in our shoes.  We parents haven’t even walked in each other’s shoes.  That is the thing about autism.  There is NO one size fits all treatment.  No miracle cure.  Autism is a spectrum disorder which means that no two people with autism are the same.  That makes treatment very difficult to define and pursue.

One thing about the autism community is that we are well connected.  There are Yahoo groups and Facebook pages where information is exchanged, books are reviewed and experience with certain treatments are described in detail.  If you just happened to see the video about that one kid on the morning news show…..chances are we have already seen it.  We have read all the books, we read the latest articles…..we contact each other for what to do in certain situations.

It is hard enough to parent a child with special needs without feeling like we are being “observed”.  The LAST thing we want to hear is about an area where we are perceived to be lacking.

Many of us parents choose to look at things through the lens of humor.  Seriously, some of the things that have happened to us could not be imagined.  We live in a chaotic, messy world where pantry doors must be locked with a key and bathroom skills are not acquired until later in childhood, if, at all.  In order to get through the day, we have to laugh.  You might not think it’s funny, but that is the only way we can survive sometimes.  Sarcasm is our way of venting…..we may or may not complain…..but we must vent in some way. Many of us see Facebook as a way to give the world a view of our life, warts and all.  And many times we say something that may be misinterpreted.

One thing is for sure.  We LOVE our children fiercely.  We see the wonder in all that they have learned and achieved.  We celebrate every tiny success.  We do NOT like the things that come with autism.  Things that are hard for us and things that are especially difficult for our kids.  We didn’t ask for this life, but this is what we’ve got.  We are muddling through day by day.

Truly, we appreciate your concern and your interest.  But if you have not ever been in the same room with my child, keep your opinions to yourself.  You have not been there since day 1.  You have not dried my tears or dried the tears of my child because he was so frustrated with his inability to communicate how he is feeling.  You have not been in the grocery store when I have had to walk out because of a meltdown in aisle 7.  You have not been up from 2 – 4 am with a child that absolutely WILL NOT go back to sleep.  If you really want to help, educate yourself about autism.  If you would like to help with an individual child, get to know them.  We parents are so touched by people that take a true interest in our kids, despite their disabilities and quirky behaviors. People who come back again and again are champions in our eyes.

I know that this may sound like sour grapes on my part.  That is not my intention…..but I was really angry to hear what had happened to my friend and this is my way of responding.  I reminded her, that we are the ones that have to educate the world about our kids, not for the world to educate us about our child.

 

The Magic of BOOM!

Around the 4th of July, everyone gets excited about participating in a time-honored tradition – watching fireworks! When you have children, it is one of the activities that you can’t wait for them to be a part of. Of course, even in this area, it was harder for our family. When Tanner was little, I could NOT persuade him that there were cool things in the sky making all that noise. The noise didn’t seem to catch his attention, so he would not look up in the night sky. Every year, we would attend the fireworks, and Tanner was happy to simply listen to his music and eat whatever snack we had brought along.

Until July of 2006.

That year, we were able to attend the fireworks at a neighborhood near us that puts on a big production. Steve was resting and dealing with a bad back and Adam was with friends, so I grabbed some chairs for Tanner and I and we headed out. I found what I thought would be a good spot on a street near the golf course where I suspected that they would be shooting off the fireworks. Tanner and I waited patiently and then it was time!
The first firework went up and I realized that I had selected the PERFECT spot. We were so close that the sparkly spheres were seemingly going off right above us. The “boom” of each rocket was loud! I looked at Tanner and his gaze was skyward. With each explosion, I would say “Boom”. After just a few, Tanner began to say it. His eyes did not divert from the sky.
HE NOTICED! HE LIKED IT! I was so excited and my joy overtook me as I sat watching him watching the fireworks with tears streaming down my face. I soaked up every moment. It was truly one of the best moments in my life…..he was finally enjoying something that everyone enjoys every year.
We don’t always get to see fireworks because we usually attend a Family Retreat over the 4th. Sometimes I manage to find a fireworks show that is happening right before the 4th and we always go. He loves it now! I don’t even have to say “Boom” anymore. He says it.

And for me, each “boom” is pure magic!

Senior Sunday…..not for me…..but that’s okay

Yesterday was Senior Sunday at our church. You know, the time when they recognize all the students in the youth program that are graduating. Before my older son graduated, I would always cry on Senior Sunday….thinking of when he would graduate. I was sitting with a friend at church and she asked, “Isn’t this Tanner’s age?” I had not even thought of that. I remember having the thought cross my mind several times this year…..”This would be Tanner’s senior year if he didn’t have autism”. But to be honest, that was not even on my radar as I sat down for the service.

For a moment, after she said that, I thought, “Oh, no. Here come the tears!”

But they didn’t come. And then our pastor got up and began to preach. The topic could not have been more appropriate. He asked us, “Has God ever asked you to do something that is way over your head?” I laughed to myself. “Yep, every single day of parenting Tanner!” My friend sitting next to me has a child with autism and I knew she was thinking the same thing. Our pastor talked about the graduating seniors, how difficult it would be for their parents to “let them go”, how difficult it would be for all when these children leave the nest.

“My child will never leave my nest.” That is what I was thinking. That is the part that is waaaaay over my head. What happens when Tanner is finished with school?. What will we do? I know what I WANT to do. Win the lottery and move to Colorado where Tanner and I can hike together everyday and enjoy God’s creation. The likelihood of that is slim. And so, we have to figure out what opportunities are out there for Tanner. It is OVERWHELMING to think about this. How on earth will we figure this out?

My mind was wandering in this topic but our Pastor kept on preaching. About feeding the five thousand. About 5 loaves and 2 fishes and how they ended up being more than enough to feed those who were listening to Jesus teach. About how God can do amazing things when we trust in Him to take what meager skills we have and see how He glorifies them with His power.

And somehow, I rested in these words. As the parent of a child with autism, everything is WAAAAAAAAY over my head. But God has been with me each step of the way. And whenever I have needed BIG ideas, BIG solutions to some tiny, yet gigantic issues-He has showed up BIG. He has given me a sense of creativity and problem solving. He nudges me to try things that I don’t think will work. I don’t really see any reason to doubt that in the years to come, no matter how much I worry or furrow my brow about “What will we do with Tanner?”, that God will show up at that time.

My favorite verse is Jeremiah 29:11…..”For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” This verse has played out in my life many times and I cling to it in regards to Tanner’s life as well. This verse is often quoted during graduation time on cards and gifts. This is not lost on me!

SO.

I’m trusting in God’s promises. AND I am trusting in my pastor’s words….. Even though I feel over my head, I know that “in the hands of Jesus, not enough is more than enough”.

Just like the bread and the fish.

Even on Senior Sunday.