October 2013

Caring for Your Older Autistic Sibling

by Tim on October 18, 2013

I realize I haven’t talked a lot about our younger son, who we call Dale Jr. here. He’s now 4 1/2 years old and is exceptionally bright and observant for his age. He misses almost nothing, and is routinely telling us about all the new insights he comes to. Not a day goes by that we don’t marvel at some new bit of wisdom he’s discovered.

He also asks a lot of questions. After all, asking questions is certainly a sign of intelligence as well. However, there is one area largely missing from his questions: Why is his brother not like all of his friends or himself?

We have certainly raised him to believe that differences are a good thing, and we don’t make a big deal – or any deal at all – of the J-man being autistic. To us, it’s another way of experiencing and processing the world. We do our best to celebrate each of our two sons’ unique gifts.

dale-jr-and-jman If Dale Jr. were to ask questions about his brother or about autism in general, we would certainly do the best we could to answer them. But it seems to me that he simply sees him as his brother whom he loves, and that requires no explanation for him really.

We went to Dollywood over the summer – the first amusement park trip for either of them. It went better than we expected, though there were still numerous challenges. We had to keep a pretty tight rein on both of them in the crowds, but keeping close tabs on the J-man’s sensory and social stresses took up a lot of our focus. And I think Dale Jr. sensed this.

We stopped in one of the park’s restaurants to get something to eat, and Dale Jr. took his brother’s hand and led him through the line. He began narrating the food options from the menu to the J-man (he’s an impressive reader for his age). It was so sweet to watch him take care of his older brother. And never has he made a big show of it.

He has even become one of the J-Man’s ‘translators’. Our J-Man is minimally-verbal and with regard to verbal speech is roughly equivalent to a 2 or 2 1/2-year-old. When he does talk, his speech sounds can be very difficult to understand to all but a few people. Sometimes even we have to ask him either to spell out the word he’s saying or type it out on his ‘talker’ (speech device). Dale Jr. has become at least as good at understanding the J-Man as we are, and he’s more than happy to help others understand him with no hint of awkwardness or self-consciousness. It really is beautiful to see.

Lately, Dale Jr. has developed a keen awareness of when we are meeting with someone related to the J-Man’s autism, like the doctor, therapist, services provider, etc. It’s become very important to him to tell whoever we’re talking with that “my brother has autism.”

I’m not sure what thoughts are going through his head while he does this. I don’t yet know what he thinks autism is. I imagine he’s not completely sure either. And that’s ok. What is so wonderful is that he is clearly doing it because he’s looking out for his brother. And he doesn’t seem to be doing it out of any sense of obligation. He does it simply because he loves his brother.

He has a pretty keen ‘autism radar’ in public too. He has seen other autistic kids and gone over to play with them. If the child doesn’t reciprocate, he doesn’t make a big deal of it. He just innately understands. Recently he was with me at the J-Man’s school for pickup, and he had on a Wonder Pets sticker. Several of the kids at school are really into the Wonder Pets, and he loved the attention of having the kids come up to talk to him about Ming-Ming. Dale Jr. can be rather shy, but he seems at ease in situations like these.

I believe he will have amazing insights to teach his peers and adults about autism. He already is. He identifies it with someone he loves. He doesn’t fear it. That he loves his brother and autism is part of his brother is enough explanation for him.

Perhaps we overcomplicate everything when it comes to autism. Extend love and kindness to others, and let go of any fear. Take care of those dear to us. Love and value people for who they are. It really is that simple. My 4 1/2-year-old taught me that.

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I Am Disabled

by Tim on October 9, 2013

I am disabled. There. I said it.

And today is my 40th birthday.

And I’m coming out of hiding so that something good can come of this.

As you may have noticed, I have been absent for several months from blogging. I have popped up occasionally on Facebook, Twitter, and Instagram, but mostly I’ve been laying low.

And by laying low, I mean… well honestly, I’ve been in continuous pain. I suffer from constant migraine headaches. I’ve had fewer than 24 total pain-free hours since January. If I’m not completely asleep, I feel pain. Even sleep isn’t much of a respite because the meds I’m on regularly give me nightmares.

Silhouette of young man against blue curtains I stopped blogging because I didn’t want to face my new reality. I wanted to believe it would get better. I wanted to keep pretending that a cure was just around the corner, that the dozens of doctors’ visits would be enough. But now it’s time to face reality so I can move forward. It is reminiscent of our J-man’s Diagnosis Day, except this time it’s me.

They have some ideas about at least part of what’s causing the headaches, but other aspects of it are still a mystery. All treatments to this point have either barely helped or failed entirely. And I have a small army of good doctors trying to help me.

Each treatment has held the promise and hope that maybe this is the one that will stop the headaches and let me return to normal. Each time, that hope has evaporated. I feel like I’ve sung these refrains before in our J-man’s early days of therapy. But again, this time it’s me.

At a recent neurology appointment, we discussed the latest procedure that hadn’t worked. This should have been the one to fix it, but it didn’t. We talked honestly about how my pain is actually getting worse, the medication side effects are piling up, my body is unraveling, and my emotions are frayed.

And then he said a word I had never even thought about in reference to myself. I could not have possibly conceived of this word ever being used about me.

“I think it’s time that we look at this as a disabling condition.”

And even then it didn’t register.

A couple of minutes later:

“Now this may only be a semi-permanent disability, but since you can barely work you should consider filing the paperwork to go on disability.”

The jagged points of his words started to penetrate my mind.

I really am disabled, I thought. I can’t believe it has come to this.

I don’t know how to make my peace with this yet. I know it may not be forever, but it’s certainly going to go on for a long time.

I have gone from marathon runner to disabled in less than a year. These constant headaches have stopped my life cold. My business has all but fallen apart. I can’t do even half of what I need to do around the house. I’m now at my highest-ever weight. My ability to play with the kids and be the kind of dad I want to be for them has deteriorated badly.

I feel like I am often a burden. I can’t do my share around the house. More and more people are having to help me do things. I’ve put on a good show and hidden a lot of this from people, but I can’t anymore. I need this to be out in the open now.

Mary and I talked the other day. We are both at our absolute limit. We need help. And I don’t ask for help very well at all. We won’t survive without it, though. I know the first step is being honest about where we are.

There are turning points in our lives where so much changes. Diagnosis Day was that way for our family. And now this public statement of who I am becomes another turning point. I am no longer the person I was, and I don’t know yet who I am going to become.

But as he did with Diagnosis Day, our J-man is teaching me how to handle this new challenge. He, too, is, by any measure of the word, disabled. He depends on us and others for most every daily task. No one values him less because he isn’t able to do these things, though. He’s the embodiment of love as simply being who you are, not what you can do or not do.

I am trying to extend this grace to myself even as I feel like a burden. Mary is having to do much more of the daily chores and tasks of our family. Our finances are in even worse shape because I can work only barely, if at all.

I am learning to accept that I am loved regardless. I am struggling to find new ways to contribute to the daily needs of our family. I am trying to learn how to ask for help and accept the generosity of others when that help comes. These are things our J-man has already figured out. He is again my teacher at a critical turning point in my life.

And he is showing me one last lesson that I find myself clinging to now. Just because I am faced with many challenges and limitations, I can still have goals and dreams. They may be different than the ones I started with, but there will be great things I can still do.

I will still make that dent in the universe.

I have sought out people to help me discover what my new path will be. I have been reminded that the best way to find healing and support is to be open with your friends and the tribe of people who love you. They have rallied to help me. I can’t even begin to convey how much this means to me.

It has reaffirmed what I hold as a personal truth. Most people are inherently wonderful, and they want to help. You just have to give them the opportunity to help you.

I’ve decided to give myself a clean slate. It’s a new day and a new year. This is now my new life. And I feel strangely hopeful in the midst of the pain and fear. With the help of family and friends, I have overcome challenges before. And despite the fact that this challenge is perhaps greater than any before, I have faith that together we will find something wonderful to make of it.

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