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The Haircut

February 28, 2012 By 2 Comments

Yesterday Stephen got a haircut. Every time we go it is the same thing, I have to explain what he wants because he is unable to talk to the person about to cut his hair. Why? Because they might yell at him? Because they might ask him difficult questions he cannot answer? Because they might say, ‘that is stupid, I’m not going to cut your hair that way. Now sit down and be quiet while I do what I want with your hair!’?

No, it is none of those reasons. It is because he doesn’t want to. He doesn’t know them (even though it is the same place we go every time and usually the same three people working there each time.)

But, this time I didn’t even go. We sent Stephen (almost 15) and his older brother (almost 18) on their own. I tried to give Stephen instructions on what to say. He wouldn’t listen. All he kept saying (whining, really) was, ‘they’re strangers, stranger danger” (he was joking, but in the way that one does when joking about something that really hints at the root of what you’re afraid of). I offered to tell his older brother what to say and Stephen said that would be weird. (At least we agreed on that one!) I still wasn’t backing down. He was going to have to communicate to the person cutting his hair what he wanted done. So, I offered to text the instructions to him. I thought, I can text it and he can just read it off the phone–that way, he knows exactly what to say and won’t forget anything if he gets nervous.

A little while later the boys arrived home. Dad was happy because the hair was short enough. Mom was happy because she didn’t have to go. Brother was happy because Stephen didn’t have a meltdown at the hair place. Stephen was happy because it was over. So, they all lived happily ever after … until the next time when Stephen forgets that he did so well going to get his haircut without mom’s assistance, but mom REMEMBERS.

~ Louise

Filed Under: Asperger, Journey, Parenting Tagged With: , ,

Acceptance – The Final Stage

February 27, 2012 By Leave a Comment

It’s surprising to me that I’m still stuck here, camping out on the outskirts of acceptance. I already thought I’d moved through this stage – in 2007, 2008, 2009, 2010, and 2011.  *Ever since his diagnosis in the Fall of 2007, I seem to mark my years from one Fall to the next.*  We took him in for evaluations; we knew something had to explain his struggles. But it still came as a shock when they said, “he has autism”.

I just can’t believe I’m still dealing with acceptance. I’ve been through this. I’ve had the heart to heart with my husband, every year.   I’ve admitted, “it’s not going away” – as much as I dreamed and hoped it would.  It looks different now than it did when he was three, and that’s a major part of the struggle – never knowing what next year will bring for him and how it will affect him.

But why do I still ask myself – will it go away … someday?

The problem with still asking myself that is twofold. It delays true acceptance, which I thought I had but the opposite keeps rearing its ugly head. And it means my children, my family, are living in a holding pattern. This is so complex, it’s hard for me to even approach it via a blog. It’s just not as simple as … tell him, the knowledge will help him own it, will help him to better understand himself, and it’ll help his siblings to be more understanding. Oh sure, that’s the neat and tidy happily-ever-after ending to this situation. But I don’t have fairytale kids. I have REAL kids. What if it all blows up in my face? Older brother becomes less understanding, more condescending? What if my son with autism spirals into a state of pity? What if he thinks less of himself because now he really understands why his sister, four years younger, is doing and saying and understanding some things that are still hazy for him?

There should be an emoticon (one of those cute email smiley face emotions) for sighing. Insert Emoticon: Mom, tired from always worrying about an unknown future for her child. I used to appreciate the puzzle symbol for autism. I still do, it speaks volumes. But I also loathe it. It kills me that I have no idea how autism will affect him as he grows, how it will present in his life.

I am thankful I have God walking ahead of me, and my Owen, and the peace that comes from Him alone. But the struggle remains daily …  accepting this life and the unknown that comes with it, forever.

Kara

 

Filed Under: Asperger, Autism, Change, Diagnosis Tagged With: , , ,

On February 20th

February 26, 2012 By 3 Comments

Life in our home is never boring, regular or predictable.

Ben gave me my Valentine’s Day present tonight.

He was practicing in his “trombone room” (prior to his brain injury he was a professional musician).  I was sitting upstairs in the family room reading.  For a while I didn’t hear any practicing.  Then I heard Ben slowly coming up the stairs.  He had a sheepish look on his face.

“I planned ahead for this one,” he said.  “Sometime in January.  But then I must have forgotten about it.  I found this when I was looking for some music in my room tonight…” And from behind his back, he pulled out a beautifully wrapped Valentine’s present.

Part of the problem with having short-term memory loss is that Ben can’t always remember what he has done.  Despite his faulty memory, Ben has outstanding coping skills.  He uses his notebook and google calendar religiously.  But it’s not uncommon for things to fall through the cracks in his record keeping.  And for some reason, this is particularly an issue with gifts.

One year at Christmas, Ben discovered he had bought me three packages of chocolate-covered espresso beans…when the fourth one arrived via mail, he was no longer amused.  One year he was convinced he bought me earrings for Christmas (we never found them).  And he bought me my favorite musical on DVD for two birthdays in a row.

I respect my husband.  I respect that he keeps trying.  I respect that he responds with humor far more than he responds with anger or frustration.  Several years ago, I loudly instituted a policy in our family that “children are in charge of gifts.”  If Ben buys me a present, he is supposed to tell one or more of the children and make sure that they know where the gift is hidden.  Apparently Ben forgot this coping mechanism this year.

I am thankful (and actually a bit surprised) that Ben even thought to buy me a Valentine’s day present.  Technically, he bought me two sets of gifts…the card and chocolate I received on February 14th, and the lovely red mug I opened tonight.  I was surprised when I found that Ben had bought me a mug.  “You remembered,” I said with joy.  “I told you how sad I was when my red mug broke.”  “You did?”  Ben had no memory of the conversation that prompted him to buy a present he didn’t remember buying.  We were both glad that Ben found his first Valentine’s day gift to me, only six days after Valentine’s day.

Now if only he could find those Christmas earrings from 2010….

~ Nancy

Filed Under: Acquired Brain Injury, Relationships Tagged With:

Acceptance

February 25, 2012 By Leave a Comment

Accept the way God does things, for who can straighten what He has made crooked? Ecclesiastes 7:13.

My mother’s sister developed schizophrenia in her early 20s.  This was during the time when they institutionalized the mentally ill.  When I was around 7 or 8 years old I would go to the hospital in Knoxville with my mom and granddad to see her.  I don’t remember too much about those visits since I was so young.  When I was older she was moved to Moccasin Bend Hospital in Chattanooga, and I do remember my mom and I going to that hospital on many Thanksgiving mornings.  My mom would sign my aunt out for the day so she could eat Thanksgiving dinner with us.  I remember my mom saying how much she hated mental illness and what it had done to her sister.  When the hospital no longer kept patients long-term due to cut backs, she was moved to a group home where she eventually died in her 80s.

When my son was diagnosed with schizoaffective disorder, it was hard to accept especially after being exposed to mental illness with my aunt.   When he first started taking the antipsychotic medications, I thought they were making him more psychotic when in reality he needed more of the medication.  I would call the psychiatrist’s office and tell the nurse the medicine was making him worse and they would increase it.  Just the word “antipsychotic” sounded bad to me.  It was doubly hard on my mom but she has been and is such support for me and my son for which I am so thankful.    My son’s illness is a very lonely and alienating illness.  It is not one that people want to talk about.  At one time I wanted to start a support/prayer group at my church for families of the mentally ill but it didn’t work out.

I recently found a copy of the Serenity Prayer, the full version.  It is beautiful so I copied it below as my prayer to close with.

Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as Jesus did, this sinful world
as it is, not as I would have it;
Trusting that You will make all things right
if I surrender to Your will;
That I may be reasonably happy in this life
and supremely happy with You
Forever in the next.
Amen.

Gabrielle

Filed Under: schizoaffective disorder Tagged With:

Should I State a Disclaimer Up Front?

February 24, 2012 By 4 Comments

Have you parents of children with Aspergers ever wanted to walk into a place stating a disclaimer up front? Something to the effect of “the views, statements, and actions of my child may not reflect the views of the management, a.k.a. me”? Okay, not really that particular statement, but something like that?

This week I found myself at a dinner with some folks that I hadn’t seen in several years. We were having a great conversation – me sharing about a recent missions trip to Kenya and those folks sharing about past trips to Kenya and Chad. In the middle of our lovely conversation, my son asked if he could be excused. I wanted him to hear the conversation so I said, “No, just stay and listen for a while.” He not so politely replied that he didn’t care about the conversation and he wanted to get up. Talk about feeling put on the spot. I felt like the whole room was watching to see how I passed this public parenting test. I probably should have excused myself for a minute and taken my son with me for a private conversation but I didn’t. I continued to insist that he stay and the situation spiraled downhill from there.

There are so many times that I am consistent with my own philosophy that God made my son with Aspergers on purpose and that it is a blessing and not a mistake. I can often be consistent with my desire that people get to know him without necessarily knowing his “label” of Aspergers and learn to love him as he is. But, this time, I was concerned about people’s perception of ME and MY reputation instead. So, I blurted out that my son has Aspergers. Good, bad, or ugly – that’s what I did. Understanding dawned on the faces at the table (this couple has a grandson with Autism) so it may have been the right call to make but I found myself reflecting later about whether I told about Daniel’s diagnosis to increase their understanding of Daniel or just to make myself look better as a parent.

So much of life is not about our actions themselves as much as our motives. Proverbs 16:2 says, “All a person’s ways seem pure to them, but motives are weighed by the LORD.”  He knows my heart and, thankfully, the Lord forgives me when I make a mistake.  There are times when I do things right and times when I don’t.  All parents struggle with this desire to do it all right and to do it with pure motives but I think parents of children with special needs and special challenges may struggle with this more often.  The moral of the story – allow yourself some room to make mistakes but pray for consistency in philosophy, actions, and, especially, motives.  I hope I do better with my next parenting challenge!

~ Brooke

Filed Under: Autism, Bible, Expectations Tagged With: , , ,

Superpowers Not Included

February 23, 2012 By 2 Comments

My son Noah is possessed of some remarkable abilities and characteristics. However, card counting, mind reading, and mathematical formulations aren’t among them. In fact, we’ve had to ensure Noah gets math tutoring because though he is “exceptional” in many ways, he’s apparently also inherited his mother’s exceptionally poor math skills. I use a calculator, people. A lot.

When Noah was diagnosed, I couldn’t swing a cat without hitting someone who thought their child was also autistic. More specifically, that their child had Asperger’s Syndrome. It appeared to Matt and me that Noah had been diagnosed with the disability “du jour;” that for some reason, our friends were seeing diagnostic ghosts in every corner – and that if there WAS a disability lurking, Asperger’s would be the best one to have. It grated me in ways I am not proud to admit.

I think all this was owed in large part to current trends in media. Everything from the movies “Rain Man” and “Extremely Loud, Incredibly Close,” to the TV shows “Touch,” “Alphas,” “Modern Family,” and “Community,” feature a character with ASD. In much of this programming, we’re led to believe that these exceptional individuals are gifted in nearly superhuman ways.

As in, “Oh, Noah has Asperger’s? What’s his power?” kind of ways.

I tell you what his power is. His power is in controlling himself in public when I can tell he’s on the verge of a total meltdown. His power is grabbing the tail of my shirt and begging, “No, No, No, No” when he doesn’t want to do something, instead of throwing himself on the floor at WalMart.

I must say here that my heart carries within it a hidden injury – that because of the popularity of his diagnosis and the frequency of the “I think my son has Asperger’s, too!” discussions, I felt as if I was never truly allowed to mourn his diagnosis. Perhaps that’s for the best. Am I the kind of person that likes to catalogue catastrophe – to knit and weave our manifold troubles together in such a way that I can roll them out like an afghan under which I like to take a self-pitying siesta. I didn’t get that chance with Noah, what with my own diagnosis of an extremely rare disease, my brother’s lymphoma diagnosis, my husband’s job loss….See? Knitting.

The Lord may have pushed toward us the concerned visages of other parents to remind us that we’re not here to be served, but to serve (Matthew 20:28). We became sudden experts on Asperger’s Syndrome, and in that way, were able to offer counsel, connect friends with doctors and clinics, and listen more effectively. I believe also the Lord used Noah’s diagnosis to quietly remind others that these unique children aren’t always “gifted” in the ways we’d like (ways that are somehow profitable, rare or mysterious). Making progress, walking by faith, trusting that the Lord intends for these children a one-of-a-kind destiny (Jeremiah 29:11), THAT’S the gift.

(Even though Noah’s memory is so strong, it’s nearly unassailable.)

- Sarah

Filed Under: Asperger, Challenge, Expectations, Journey, Parenting, Uncategorized

The verse that gives my days significance

February 22, 2012 By 1 Comment

2 Peter 3:8 New International Version (NIV)

8 But do not forget this one thing, dear friends:

With the Lord a day is like a thousand years,

and a thousand years are like a day.

 

I’ve heard the second half of this verse referenced many times (most recently at a funeral), but hardly ever the first half.

 

What does it mean  that “a day is like a thousand years?”

 

To me, it means my minutes are of WAY MORE significance than I imagined. Do the math.

If 24 hours = 1000 years, then

12 hours = 500 years

6 hours = 250 years

1 hour = 42 years

30 minutes = 21 years

15 minutes = 10.5 years

5 minutes = 3.5 years

1 minute = 8.4 months (34 weeks)

1 second = 4 days.

Doesn’t this formula impart so much more significance to the way I spend my time, for better or for worse? That hour I spend watching my favorite TV show, which has developed a plotline between 2 really nice unmarried characters who are so in love, they are trying to have a baby together – “a really BIG decision” - with the word “marriage” not even spoken between them?” Yes, it’s only one plotline in a show I love (with a special needs family!), but how many minutes are spent on it, and how many years of watching does it equal in God’s book?

 

What about the 30 minutes I spend being mad at my husband? The nanoseconds of critical thoughts about others throughout the day?  That unkind word? The accumulated hours of self-absorbedness, self-indulgence and plotting to get my own way? This verse makes me weep with terror over my badness, and plead for my Savior’s mercy.

 

But, thanks be to God, it works the other way too. This verse protects me from beating myself up when I “only have 5 minutes” to connect with my Mom on the phone, read my Bible, or pray. It pleases God when I spend “21 years” playing Wheel of Fortune with Daniel (17, autism), “10.5 years” of thanking Him for His mercy and goodness to me, the multitude of quick “arrow-prayers” of intercession for my beloved “Barney” whose husband died this week, “84 years” mentoring my CS Lewis Institute Fellow.

 

My minutes matter.

Psalm 90:12 New International Version (NIV)

12 Teach us to number our days,
that we may gain a heart of wisdom.
Danz Mom ~ Peggy

Filed Under: Autism, Bible, Confession, Journey, Parenting Tagged With: , , ,

Trying to Get Back on Track

February 21, 2012 By Leave a Comment

My mom’s church was having a youth discipleship weekend and we gave Stephen the option of going or not. Friends of ours were going to be leading the worship. He decided to go so we made all the necessary arrangements. The weekend began Friday at 6pm and ended Sunday at noon. We knew that the students would be running full steam from morning until midnight (well past Stephen’s usual bedtime) and that he would be worn out after this kind of a schedule. On top of that he was already fighting an upper respiratory infection and just started an antibiotic and a new cough medicine to help him sleep. [Read that as, he was already off kilter because of sleep deprivation and illness.]

I have written in previous posts that this school term is getting away from us. Stephen has moved from good standing to treading water to trying to keep from going under with his grades and assignments. All this was going on when he went to school Friday. We knew Friday was going to be a busy day with school, doctor’s appointment, packing, then the youth event. But it was even worse than that when there was a “surprise assembly” at school. While many of the kids at his school were excitedly texting and facebooking about Drake (a recording artist) coming to their school to talk to them, Stephen was feeling bad and wishing he could be in Algebra. As a result of the assembly, he missed the explanation of how to work the math problems and his study hall was reduced to just a few minutes.

Sunday after he got home from the discipleship weekend he was exhausted. There was no point in trying to get him to focus on school work. After letting him rest for both physical and mental restoration, we had a short family birthday party for my mother (another of the life events that must be celebrated while we can). After the party he shared with me the anxiety he was feeling about all the work he had. This was about 8pm Sunday evening. I told him to make a list of all the school work that he had to do and then get ready for bed. In my mind I thought the list would give better perspective of the amount of work he actually has to do. You know, it really IS a lot of work.

So, here we sit. He is at the kitchen table. I am at my computer. He is working on homework. I am writing this blog. He works for a few minutes and tells me how tired he is. I type for a few minutes and come up with some way to break up the monotony of his work and pep him back up for a few minutes. So far on his breaks we have had hot chocolate, played basketball for fifteen minutes, eaten lunch. For his next break he is going to walk on the treadmill. He has had popcorn. I’m running out of ideas and we are running out of time.

It is weekends like this that remind me how much he still needs our guidance and help in his day to day decision making processes and staying on task when he gets overwhelmed. When something like a cold or a weekend event throws him off of his usual schedule he needs our help making the necessary adjustments to get back on the right track. At this point (presuming he goes away to college somewhere) we have about three years to help him learn how to make those corrections on his own. That is a sobering thought.

~Louise

Filed Under: Anxiety, Asperger, Parenting, school Tagged With: , , ,

On Speaking to Ourselves

February 20, 2012 By Leave a Comment

A common question for those of us living with someone with a hidden disability:

“How much of this behavior is a result of the disability?  How many of these challenges would I be dealing with if my spouse/child were neuro-typical?”

In his book Spiritual Depression, Martin Lloyd Jones mentions the discipline of “talking to ourselves” rather than “listening to ourselves.”  He writes, “Have you realized that most of your unhappiness in life is due to the fact that you are listening to yourself instead of talking to yourself? Take those thoughts that come to you the moment you wake up in the morning. You have not originated them but they are talking to you, they bring back the problems of yesterday, etc. Somebody is talking. Who is talking to you? Your self is talking to you. Now this man’s treatment [in Psalm 42] was this: instead of allowing this self to talk to him, he starts talking to himself. “Why art thou cast down, O my soul?” he asks. His soul had been depressing him, crushing him. So he stands up and says, “Self, listen for moment, I will speak to you.”

I am often tempted to listen to myself.  I tell myself that life would be so much easier if Ben didn’t have his disability.  I question things, wondering how many of our difficulties are due to misfiring in his brain.

I need to listen to Martin Lloyd Jones:  “And then you must go on to remind yourself of God, Who God is, and what God is and What God has done, and what God has pledged Himself to do. Then having done that, end on this great note: defy yourself, and defy other people, and defy the devil and the whole world, and say with this man: “I shall yet praise Him for the help of His countenance, who is also the health of my countenance and my God.”

In many cases, the cause of Ben’s challenges does not matter (although I might do better to ask myself why I’m so short-tempered and easily angered!).  The important issue to remember is the fact that the sovereign God of the universe has pledged to never leave me nor forsake me.

“And behold, I am with you always, to the end of the age.”

**Please note…I do not, in any way, believe that we should not learn all we can about the disabilities that affect our family members.  We need to understand the complexities of the brain and the many ways that we can help our children and spouses.  Cognitive therapy and neuropsychological testing have helped us more than I can say.  But it is the Holy Spirit who ministers to our souls and ultimately causes lasting change in our hearts.

Filed Under: Acquired Brain Injury, Change, God's presence, grace, Uncategorized Tagged With: , , ,

An Unusual Valentine

February 19, 2012 By 1 Comment

The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing. Zephaniah 3:17 (ESV)

When I began writing for Chosen Families, I intended to focus on my three bouts of major depression and all I have learned as a result of those dark periods.   However, after telling my basic story in the early posts, it has been a challenge to continue discussing depression, not a current struggle, while the obstacles of my daughter’s sensory processing disorder are in the limelight.

Recently, despite our sensory related struggles, I felt the Lord nudging me to revisit the topic of depression, but I was stumped as to how.  Then the Lord revealed what He was doing and inviting our participation.

God works in amazing ways, and the longer I live, the more amazed and awed I become as I discover in real and practical ways the deep love He has for people: whether still lost or found and struggling.

This past summer someone new moved into the small cottage next to our home, with which we share a driveway.  The landlord introduced us to Dave, who seemed like a nice guy and actually shared that his wife “no longer loved him” and filed for divorce, hence why he was our new neighbor.

We felt sorry for him, because he was obviously heartbroken. In the months since, we always exchange pleasantries in passing and my husband occasionally chats with him while doing yard work.

We recently learned from his caring landlord that he is suffering from depression and is currently on disability from work.  We had noticed his car home during the day right before Christmas, but figured he was trying to use up vacation days before the end of the year. The landlord, a Christian, learned that Dave didn’t have any kind of faith or religious background to help him through this difficult time.

God moved my heart a couple of weeks later in a big way.  I actually wept as I pulled in our driveway and looked at the little cottage with the grieving man in it. I believe the Lord let me feel some of His heart for Dave and I was motivated to act.  Then the idea came to me to send him a small note, from my husband and me, declaring God’s love for him on Valentine’s Day, a day when he might feel extra alone and forgotten.

Despite our apprehension, we wrote the brief note and included a small gift card to a local coffee shop.  We prayed that the Lord would soften Dave’s heart to hear and receive His great love.  Dave is not forgotten and is dearly loved by His Heavenly Father, whom we pray he will come to know in the days, weeks and months ahead.

We just received a thank you note from Dave for the pleasant surprise of our lovely card and how much he appreciated the message.  God is working and my husband plans to look for other ways to reach out to our neighbor.

Friend, you too are not forgotten and dearly loved, no matter what hopeless situation you may find yourself today.  The Lord is in your midst, longing to quiet you with His love and not just sing, but sing LOUDLY, of His great love for you, me and everyone.

In His love,

~Lynn

 

Filed Under: Courage, Depression, Encouragement, Friends, General, Isolation, Marriage, Prayer, Relationships, Sensory Processing Disorder Tagged With: , , ,
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