When it comes to disability and/or depression connection to others is a must

Besides working as a software application administrator at Boise State University my friend Carlyle is a regular speaker on autism. He has spoken to local law enforcement, parents of autistic children, campus ministries and mental health professionals. He is the first autistic person to serve of the board of the Autism Society Treasure Valley and he founded Boise Autistic Adults and Allies which brings together local adults with autism as well as parents and siblings of those who are autistic. And he is the one who taught me, among other things, that many adults with autism, or as he would say, autistic adults, prefer identity first language instead of person first language.

He’s pretty impressive isn’t he? I think so and I know his wife, Kristen, and daughter, Aeriel, would agree. Besides being autistic, Carlyle’s left arm became paralyzed 20 years ago after being hit by a car while riding his motorcycle. I’m not sure though, that this happening is as bad as the bullying he has gone through as both a child and an adult.

Explains Carlyle, “I heard stuff said about how no one likes me and no one wants me around pretty much every day unless I managed not to talk to anyone. It was much worse as a kid, but I have experienced it as an adult as well.”

Part of ASD is having a hard time reading social cues which can lead to being treated poorly by others. It’s no wonder that a large study found that adults with autism are three times more likely to have depression and five times more likely to attempt suicide than the general population.*

For some, including Carlyle, having clinical depression can be what prompts seeking help and getting an autism diagnosis. Having the autism diagnosis helps “gives me a way to explain it to those who will listen,” he said.

Yet almost half of the people with autism who tried to take their own life, according to researchers with Kaiser Permanente Northern California, had not been diagnosed with depression beforehand. In my mind, much more study and writing of resources needs to be done on how disability and depression are often tied together.

And we need to listen better to our friends who struggle with disability and/or depression. When I asked Carlyle what helps him as well as what can help others to ease depression related to disability he had this to say:

“The best thing for me has been connecting with other people. It’s easier to accept what I can’t do when someone appreciates what I can do for them. It’s easier to drown out all the voices pushing me away when there are a few saying they love me no matter what and who always hug me. I think therapy and medication can be helpful but there really is no substitute for genuine connection. I believe this applies to children and adults. For me it’s never mattered much whether I have friends like me either. It matters more that they are outside of my family. My circle of friends covers a wide range of ages, interests and circumstances.”

Lord help us listen, connect, learn and build friendships with others. We will never know what others need unless we take time to listen and learn. And in the process we can make a new friend.

* Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism : The International Journal of Research and Practice, 19(7), 814-823. doi:10.1177/1362361315577517 [doi]

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How Dare YOU!

So you say you’re my long lost uncle.

One of my biological father’s brothers.

You are trying to settle another brother’s estate and want to ask some questions and get to know me. Why now, Emmett?

I got the chance to meet Chuck, my biological father and your brother, 10 years ago. It helped me have some closure and I’m glad we were in touch before Chuck died. I think it was good for both of us.

But you? You want my adoption papers so you don’t have to notify me of what is going on with this other brother’s (my blood uncle) estate?

How dare you private message me now instead of finding me years back to get to know me. How dare you try and wash your hands of me. Wasn’t it enough that your brother, my father came home with a gun when I was 2 and said he was going to kill my mom and me? Enough that we fled for our lives?

How dare you try and dirty my wonderful adoption papers.

My dad, DAN, he is the man who showed me love and took care of me. Who is a helpful father- in-law to my husband and a fantastic grandpa for our boys. He loved me like his own from the start. No he’s not perfect but he chose to adopt me and be my dad.

You, Emmett, are my blood uncle but never cared to know me.

How dare you seek me out now for your own gain.

How dare you.

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The Underbelly of Autism

His teeth rip my flesh.

I can’t pry him off.

He yells “NO”, stands up on the bus seat and dives over the back of the bench in front of him. I catch him before he lands head first on the hard floor below (and the bus monitor holds him from behind) but he latches onto my arm with his teeth repeatedly before we can get him into a sitting position.

This is the dark side of autism; the aggressive and/or self-injurious behavior part.

OH, HOW I DESPISE IT!

The night before the bus incident we gave Luke a buzz cut and he got thoroughly upset as per usual. He hates getting his hair cut. We do it at home and last night my husband had to mostly sit on top of him in the chair since he thrashed around so much.

Since Luke, 12, is mostly non-verbal we aren’t sure which Luke detests more, the sound of the shaver or how it feels on his head. We’ve tried therapy to desensitize him to this process but so far no luck. My hubby, Mike, a tough Aurora cop, got bit on his leg while I held on to Luke’s lower half and a friend cut his hair.

Don’t get me wrong.

We love Luke so much and our family wouldn’t be complete without him but that doesn’t mean things are easy. Far from it.

I remember when Luke first lost his speech at 3 years old and our older son, Brandon, wondered if he would ever again here Luke say, “Hi, Brother”. Brandon was 8 at the time and is now 17 and he hasn’t heard it since. We do hear a very occasional word from Luke and he continues to learn to use an app on his IPad to communicate but we still so often don’t know why the meltdowns happen. I try to play detective and figure it out but often fail.

The thing with Luke is he can quickly recover and 10 minutes after a huge tantrum he turns into our smiley, social guy again. There are just so many daily cycles.

As April has arrived and along with it Autism Awareness Day/Month I don’t think it is more “awareness” that we need but more UNDERSTANDING of the toil that autism takes on the individual who has it and his or her family.

So if you see us at Target, and Luke is laying on the floor yelling, don’t assume I’m a terrible mom. Don’t assume he’s a horrible tween. JUST DON’T ASSUME.

He may be overwhelmed by the noise or the busyness and having a moment. If that moment involves him banging his head on the floor or lashing out give us a hand not a judging attitude.

 

 

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Who is holding you?

As far as birthdays go, this has been a weird one. Luke had the stomach flu last week and lovingly (ha!) shared his germs with his mama. It’s been a few days but I still don’t have my energy back. I was texting my lifelong friend, Diana, telling her that if I didn’t know Jesus loved me I would think I was cursed. These past 2 months have been rough ones.

I had to cancel a couple birthday meet ups with wonderful friends; my dear friend Meg being one. I did manage to get to Dimples Donuts with my hubby, Mike,, who took the day off to be home with me, my uncle, Lorin, and my awesome friend, Amy. The other thing I kept on the calendar was a birthday massage and adjustment at Hart Chiropractic. Mike and Brandon gave me presents (Luke was at camp for a few hours) and that was nice. Besides that Mike and I started watching “Silver Linings Playbook” but I fell asleep.

Right now I am supposed to be working on homework for a Joni and Friend’s class, which is fantastic by the way, but I want to get this down on computer first.

Historically, my birthday has been a tough day for Mike.

And that is because of me.

I know I’ve been really tough on him, expecting way too much, so this year I’ve tried to just appreciate all the kind things he does. Although it hasn’t gone perfectly, it’s been a smoother day.

Mike does a lot—everyday—to show he cares and loves me. But I have, ever since I was little, had a huge fear of abandonment for reasons I won’t go into right now. Unfortunately, the main person that takes the brunt of this is Mike. Funny thing is, for some strange reason, I’ve always had lots of friends and still have some from grade school, junior high (what we called it back in the day), high school and college. You know who you are:)

God has brought healing through His word, through counseling, through family and friends. Knowing I have a Father in heaven who loves and created me makes all the difference. For me though, it is a lifelong process of moving that head knowledge to my heart. I experience it in my heart as God works in so many ways but then I forget again. Anyone else have that problem?

Today, during my birthday massage, Heidi, who I’d only had once before  at Dr. Hart’s  office, was working on my upper arms/shoulder blade area. They have been painful since the whole laying- on- my- side- for-13-days-thing. I kept doing the work for her instead of letting her move my arms or neck. We found out we were both Thanksgiving babies and I told her I was supposed to be born on January 25th, not November 25th. This lead to me thinking about how my mom and grandma had told me when I was in the hospital they weren’t allowed to hold me. Back in 1968, the fear of germs kept premies from being held. Now we know that babies NEED to be held. Heidi had put a long foam thing underneath my spine and was holding my head in her hands to stretch my neck, and right then I had a sense that the Lord was saying to me, “I am holding you.”

I AM HOLDING YOU. Tears sprang to my eyes as I knew in my heart that, just as He is the one who holds me now, He was holding me when I was in the incubator for 6ish weeks.

HE WAS AND IS HOLDING ME THROUGH IT ALL. I had to write this down to remember—to remind myself of what He said, of what the Lord Jesus says.

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:13-14

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What happens to our child with special needs when our own health—in my case an eyeball—goes wonky?

My retina detached sometime in early October and I’m not sure how I managed to be awake and not freak out during surgery to reattach it. Just reading about the “vitrectomy scleral buckle” surgery after the fact makes me nauseous.

Not everyone can say  they have been blind (in one eye in my case), or  have had to lay on their side for 13 days, only getting up 20 minutes every 6 hours plus necessary bathroom breaks. I have survived, with the Lord’s help, both of these things!

I can now be up and resume life but the new normal includes very blurry vision in my left eye that as of yet can’t be corrected with glasses. For reading or writing I wear a patch over my left eye (the bad one) and play at being a pirate.

What made this experience 100 times more terrifying for me is I am the main caregiver for my youngest son, Luke, who has autism and is non-verbal. I, like so many other caregivers of children, teens or adults with disabilities know I somehow need to stay healthy forever. Otherwise, who will love and care for my precious Lukey?

Don’t get me wrong. I am so thankful for my husband, who is an awesome dad to both our boys. But, as a police LT who keeps our mortgage bill paid, he is home less often. He, with the help of awesome family and friends, took over for the 2 weeks during my must-be-horizontal-time although it was still a form of torture for me.

Why? Besides the obvious (being blind in my left eye, being stationary, not being able to read from that angle with my good eye) I had to hear Luke’s meltdowns from behind the locked bedroom door and couldn’t do a thing to help. Luke is very strong for an 11-year-old and did not understand why I wouldn’t get up and do things with him, so when he was home I had to hide upstairs in our bedroom. For his morning pre-bus routine I am the one that knows when he starts running wild to ask him to give me a hug. When he does I cling on to him for longer than he would like giving him deep pressure input to calm his overstimulated body. Telling him to stop it and calm down does not help, which is my husband’s technique. I also know that if he doesn’t want to get his coat on before the bus comes bribing him with a fruit snack or gummy worm gets him moving! On a couple different mornings I heard him screaming as Mike walked him out the door and down the driveway to the bus. Like I said, torture.

Two different sets of life-long friends opened their homes to me so I could have part of the recovery time free from hearing the craziness at home. This was a huge blessing.

Another blessing during the on-my-side-time was God’s presence. I was alone for much of the time so the Bible verse, “Be still and know I am God” took on new meaning for me. I was literally forced to be still and I was fearful so my prayers were much more frequent and urgent than normal. Plus, I had more time to intercede for others. Family and friends commented that I was handling things with grace and peace and this was all the Father’s doing.

Now though, I am back to “real” life with the new vision issue and it’s easy to slip back and worry again. About my own sight, yes, but also how it affects Luke. I am fine with him around the house but he is a fast runner and gets away from me sometimes when we are out in the community—and that is with two good eyes.

So I haven’t been able to take him out anywhere and this is frustrating for both of us. I’m praying that what the eye surgeon says is true—my sight will improve with time and glasses can help when my eye is more stable. But it’s hard waiting. And I so wish the Lord would show me ahead of time that Luke will have a great place to live and people who love him when we can no longer care for him ourselves.

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How come we (Christians) act so superior when, without Jesus, we are all in the same sinking ship?

As Christians our love isn’t just supposed be a warm, gushy feeling but in how we act toward others. As my good friend Stephanie Towers wrote, “Turn compassion into action.” What does this look like for us as believers when we contemplate the recent Supreme Court decision saying all states need to allow gay marriage to be legal?
I can tell you what it does NOT look like. It doesn’t look like angry, hateful comments being made toward the LGBTQ community that’s for sure. As believers we SHOULD be able to SPEAK THE TRUTH IN LOVE. Some of us (me!) veer too much toward the love part and not enough with the speaking the truth part. So we need each other to find the right balance.
Romans 1 tells us, basically, that when we turn to idols instead of worshipping the one true God all sorts of chaos and sin results. Yes, homosexuality is on the list but so is wickedness, greed, envy, strife, deceit and gossip to name just a few. I know I’m guilty of things on this list that’s for dang sure. So how come our Christian community doesn’t talk about the rest of the list? And look out when we get into Romans 2:1.
“You, therefore, have no excuse, you who pass judgement on someone else, for at whatever point you judge the other, you are condemning yourself, because you who pass judgment do the same things.”
Well, how do we like them apples? We know as Christ followers (or at least we should) that we are all in the sinking ship of sin until we grab ahold of Jesus as the only one who can rescue us– asking him to save us and be our forever friend. So if we are all in the same boat how come we often come off as mean-spirited and superior?

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Angelman Syndrome, Autism and Angst

Having a loved one with autism is tough.

With the numbers being so high of those diagnosed it is hard to even keep up with or comprehend how many people live with autism.

BUT AT LEAST THOSE OF US IN THE AUTISM COMMUNITY CAN FIND SUPPORT.

Case in point: I can bring my son Luke to a Christian counseling office where a psychiatrist prescribes something to help ease his aggression and anxiety. Autism Home Support Services sends therapists to our home to work with Luke and a significant amount is covered by insurance due to the Illinois law saying insurance HAS TO cover it. (For most insurance types anyway.) And Luke goes to Giant Steps, a school for kids and adults with…..you guessed it AUTISM.

But what if your child has another special need? One that isn’t autism.  What happened last week when I went with one of my BFF’s to bring her son, who has Angelman Syndrome, to a doctor’s appointment made my blood boil. This doctor was  just clueless when it comes to Angelman Syndrome. And the hoops this family needs to go through to get a prescription are insane. And school options? Not so much.

I don’t have the answers but I do know a couple things. I need to be thankful for the support our family has. But I can’t stop there. I need and want to support my friend and her family. And as a community we need to get in there and help.

I only wish I knew how to solve this. Or at the very least that I had a doctor friend who understands Angelman Syndrome and will get in the rink and do some battle for this family and others who need it.

–Deborah Abbs

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