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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Longing for Death While Creating Life

I awake with a jolt and immediately wish I hadn’t.  Dreaming was so much better than my current reality.  My brain lost its use months ago making tasks that used to require no thought– or at least very little– insurmountable.  I hear my mom rummaging around in the kitchen and know soon the door will fly open to my parent’s guest room and I’ll be pried out of bed and forced to get dressed.  Yes, figuring out what to wear is one of those now impossible tasks.  And it’s not just because I’m 7 months pregnant! 

“Rise and shine, it’s a new day,” my mom sing-songs as she burst through the door.

“Really, mom, please don’t make me get up.”

“Let’s get you something to wear and then my grandbaby needs breakfast whether or not you want any yourself.”

For being such a tiny person (mom is 5 foot 5 and barely weighs one hundred pounds) she is very strong and able to grab my arm to pry me and my big belly into a standing position. 

“Take off those pajamas and let’s put on this nice bright blue shirt with your maternity jeans.”

I do as I’m told since I know she won’t take no for an answer.   She reminds me that today is Saturday and that Mike, my husband, will be picking me up about 3:30 pm after his shift at work.

            “Won’t it be nice to go home and spend time with Mike and see your puppy, Chewie?”

            I shuffle out the bedroom door without responding.

            What was happening to me you ask?  For me getting pregnant turned out to be the day that changed my life, not just because we were adding a child to our family but because of how it wreaked havoc on my mental health. We really wanted a baby and had anticipated being very happy and excited when I got pregnant; which we were.  But we didn’t foresee that I would be debilitated in the process. During my first 2 ½ months of pregnancy things were fine—just the typical complaints of morning sickness.

 It’s hard for me to remember the exact timing of everything (my memory from those months is very fuzzy) but after carrying our baby for a couple months new things started to happen which I assumed were “normal” during pregnancy.  For one thing I couldn’t sleep AT ALL.  My brain was zooming around and I couldn’t find a switch to turn it off.  I took many, many hot baths to try and relax and sleep.  At the time I worked on two college campuses with a ministry called InterVarsity Christian Fellowship and when I wasn’t on campus with students I worked from home.  I remember walking Chewie and talking to a pastor at a nearby church.  I told him my ministry helping students learn about Jesus and grow in their faith was going to explode and did his church have any space that I could rent?  Also, I was a journalism major in college and suddenly had 20 different ideas for stories/books that I WAS SURE would all be published immediately.

 I sort of liked this time period, which lasted a few weeks, because I had so much energy.  It was my husband and my mom as well as a couple close friends who knew something was off and got me to the doctor.  I had struggled with clinical depression for two short bits in the past but this time I was having a manic episode. 

The much more debilitating part came after the manic episode as severe clinical depression.  This was back in 1999 and not many anti-depressants had been studied to know if they could harm an unborn baby.  Dr. Daniel Wyma, the wonderful psychiatrist who helped me, tried the ones that were studied and thought to be okay to take during pregnancy, but nothing helped.

 “When people hear the word depression they think ‘Oh, you’re sad’ but no, your everyday life is taken away from you. You forget how to do basic things like take a shower,” explains my friend Errin, who had an experience like mine while she was pregnant.

This was similar for me as well so that’s one of the reasons I needed so much help.  The other reason why I couldn’t be left alone was because I just wanted to die.  I didn’t want to hurt my baby but I didn’t want to be on the planet anymore either.  Instead of fantasizing about how my new baby would look, or planning how to decorate his room I was picturing ways that I could die but my baby would live, which of course wasn’t possible.   A couple times I had to be hospitalized in a psychiatric ward.  Without the constant supervision and help from Mike, my parents, in-laws and close friends who God used to protect me and my unborn baby I don’t think I’d be here today.  Because I was doing so poorly my OBGYN (Dr. Embry) recommended that we induce labor two weeks before my due date.  So on October 5, 1999 our baby boy, who we named Brandon Michael, entered the world. 

After Brandon was born I mistakenly thought I’d go right back to normal and be able to take care of myself and him. Obviously after all my brain and body had been through this wasn’t the case.  It took several electronic convulsive therapy (ECT) treatments and then finding the right anti-depressant until I recovered.  A side effect of ECT treatments is short term memory loss so I had to relearn some things/words as well.  Mike, again, with the help of our parents and other family and friends, did the lion’s share of caring for Brandon until I was back to being me.  This didn’t happen until Brandon was about 6 months old.

The media has been very good at informing the public about post-partum depression but what of the plain old partum kind….when it strikes while you are pregnant?  I wish I’d known ahead of time that this kind of thing can happen during a pregnancy and not just after. I had no idea that someone could be carrying new life while longing for death.  What a terrifying twist it was and there have to be others out there who have struggled with this.

Until a few years ago I had not met a single person who experienced what I did.  A woman in my Bible study at church shared a small part of her story during our group time and my ears went on high alert. In the weeks that followed we swapped our sad stories and it felt good to know that at least one other person had a similar experience.  That’s why we have the saying, “Misery loves company” I guess!  Erinn, the Bible study friend who I quoted above, also said, “I want to really help other women who go through this during pregnancy because at the time I couldn’t find anyone else.”

My doctor thinks that the manic episode was hormone related since it only happened that one time during pregnancy.  This makes me worry about when I hit menopause (and it’s getting closer everyday!) but I try not to dwell on that.  I check in with Dr. Wyma on a regular basis and strive to take one day at a time, enjoy being healthy and having my functioning brain back—although family and friends might tell you that on some days they wish it was a little less scattered!  I’m thankful that I’ve been mentally healthy now for almost 14 years. I’ll take my regular scatter brain self any day and thank the Lord that getting dressed in the morning is fairly easy  again, at least when I have clean clothes to choose from.

The nightmarish experience did result in a number of positives.–the biggest one being my wonderful son Brandon, who is a fun, smart 8th grader now.  And I think my relationship with both God and my husband has become more authentic.  Not too many men are as loyal or devoted as my husband– to stick it out like he did in spite of all the craziness.

In terms of my friendship with Jesus, which started when I was in 7th grade, I had mistakenly thought that God would make life easy and that it would keep clicking along as planned.  Now I know this isn’t true—after all look at everything Jesus went through when He was on earth.  What God does promise us in the Bible, however, is that He is ALWAYS with us.  I don’t know what the future holds but none of us do and I take comfort in the fact that no matter what I face I won’t do it alone. 

   –Deb Abbs                                                                    

 

Writer’s Note:  I did go on to have a second child—as crazy as that seems.  Luke Donald was born in August of 2004.  During my pregnancy with him I stayed on an anti-depressant and was so thankful that everything went fine (just the typical complaints of being tired and having swollen ankles!)  I do worry sometimes though because when Luke was 3 he was diagnosed with autism. A study I read thought that being on an anti-depressant while pregnant could increase the chances of autism in children.  Then again, I have always been thin and another study said that obesity during pregnancy could be another cause of autism.  So I don’t think anyone yet knows all the factors and causes related to autism.

 

                                                ***

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Embracing Disability

I’ve got a big pet peeve.  Many of them really, but the one I’m bugged by right now focuses on a Bible study guide I’m doing.  The author has used at least three times “disabling us” or “disabled me”.  She’s talking about circumstances or things that make us disabled but, in my opinion, she’s using it all wrong.  It’s the context and the tone. She is talking about what to do to avoid this. To avoid disability. To work around it and fix it.  Not to embrace it.

But didn’t Jesus Himself choose to be disabled by coming to earth as a baby?  After all, He was in heaven with His Father and came here for us.  He became human and took on all the frailties of humanity. To live a perfect life and save us. Yes, he was somehow 100% person and 100% God.  I won’t even try to explain that tough one. 

When He was here on earth He took special time to have compassion on those who had disabilities.  He didn’t shun them or blow them off like the Jewish culture did.

Yes, this is personal.  My nine-year old son, Luke, has autism and is non-verbal.  Am I supposed to not love him just how he is—because he has a disability?   God made Him and each of His children are made in His image. My nephew Teddy, who has autism–wonderful and hilarious. My feisty friends, Brandon and Timothy Clark who have Angelman Syndrome—made in God’s image and lovely.  Luke and Noah Shafer who have autism–made by God’s hand.  Joey Marino, who has cerebral palsy—gorgeous.  Beautiful.  So many others I know. 

God’s word says through our weaknesses, yes our disabilities (and we’ve all got ‘em) that HIS STRENGTH shines through.  He uses them for His glory.  But oh how counter cultural that is.  WE MUST HIDE our weaknesses and show how much we have it all together. Even in the church. But that’s not what Christ wants.  He wants us to come to Him openly and not hide our sin.  We are supposed to also confess our sins to one another.  God’s glory is shown in this way.  Not by avoiding brokenness or denying it but by embracing it.

Lord, change our hearts.  Help us to be real and authentic. Help us to embrace those with special needs and love them just how they are. 

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