Why don’t they care?

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“I get more support from strangers than my own family!”

  “My own family doesn’t even try to relate to him.”

“Why don’t they care?”

Everyday I read posts on special needs sites similar to the ones above.  Most people probably believe that if there’s a special needs individual in the family that the family rallies around them.  That’s not always the case.  I’ve seen arguments against planned communities for the disabled stating that families should take care of their own.  Yes, they should.  More often than not though, they simply don’t.

Ever since our 20 year-old son was diagnosed with autism, my husband and I have been very involved in the special needs community.  We were active in the Autism Society for a number of years before starting our own nonprofit, Good Works Farm.  Every summer since 2015, we have held a week-long day camp for special needs campers and their typical siblings.  It takes us months of planning and a fleet of volunteers to provide a farm-based educational camp for 37 campers.  Our two older children have never helped plan, and our eldest son only volunteered for 2 days of camp one year.  They barely acknowledge that camp is even happening.  Same for most of our extended family.  My husband’s mom, in her 80’s, seems to care the most.  My sister never even asks.  Aside from my mother-in-law and one of my brothers, I don’t think they’ve ever donated a dime toward the cause.

Does it hurt?  Absolutely.  We know they care about Sam.  So why do they blatantly ignore our hard work to provide this experience for him and his friends?  Why don’t they ask about our plans to provide day services and residential housing for him?  Why don’t they ask how they can help?

In an effort to answer “Why don’t they care?” for myself and others, I had to take a step back and look at the situation analytically.  Do they think we don’t want or need their help?  Do they think they have nothing to offer?  Do they think we have everything under control?  As is true about all behavior, the answer lies within the person exhibiting the behavior.  When I look objectively at the people who don’t seem to care, I realize they all have one trait in common, they are self-centered or egoistic.  I don’t mean that in a negative way, I mean, their lives revolve around themselves and their own affairs, period.  It’s how they’re wired.  Some people are egoistic and some are altruistic.

Situations can change a person from being egoistic to altruistic.  Take, for instance, a victim of domestic violence who opens a women’s shelter or a veteran who lost his legs in battle who now makes artificial limbs for others.  If it happens to you, it can change you.  Autism changed us.  But it didn’t necessarily change my sister, our two older children, or our other family members.  We do what we do because we feel called to do it.  They don’t.  And that’s okay.

In a way, we’re also being egoistic by focusing so intently on our calling that we may not realize what our family members are also going through.  It is possible to be egoistic in our altruism!  Whoa…that’s deep!

So, when I start feeling badly, wondering why they don’t care or won’t get involved, I try to remember…

  1.  How altruistic was I before autism was a part of my life?  Not very.
  2. They have a lot going on in their lives I know nothing about.  I’m busy and I don’t always take the time to ask how they’re doing. That’s on me.
  3. This is MY calling, not theirs.
  4. God will send me all the help I need to do what I’ve been called to do.  It’s not their responsibility to help.
  5. That I may be being egoistic in my altruism.

 

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Dear mom, I see you.

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Dear mom, I see you.  I see you in line at school drop-off, watching your kid have a meltdown transitioning from car to school, and the embarrassment it brings.  I know you feel like yours is the only one struggling and you feel tremendous guilt over that.  I see you pulled over, out of sight, watching to be sure he gets into the building safely, praying he has a good day.  maxresdefault

I see you, mom, tears filling your eyes, as you talk about your son finally mastering the snap on his pants at the age of 18.  With this achievement comes the hope that, if he can master that, maybe, just maybe, he’s going to be able to master the big stuff someday.

I see you as you talk about the future with fear in your eyes.  I know that fear well.  The fear that if you don’t properly prepare him for life without you, he’s going to be at the mercy of an unforgiving world.  I see you fight like a mama bear protecting her cub.  You fight for services, you fight injustice, and you fight for his rights.  You fight for him and you fight against him.

I see you, mama.  I see your bruises and scratches from wars waged over Ipads and teeth brushing, and I also see the hidden scars from the battles of the past.  I see your PTSD.  I see the bags under your eyes from years of lost sleep and the grey hair from years of worry.

I see you, mom. I see the heartbreak from the loss of the typical things you may never experience with your child.  The first crush, the first car, the first apartment.  I see you buying baby wipes, adult diapers, and the toddler toy that lights up for your adult child.  And I know, if they stop making that toy, your world is going to fall apart.

I see you, mom.  I see you buying 11 copies of the same Blues Clues DVD because it’s his favorite and he keeps scratching them.

I see you pulled off the highway as your child seizes for the fifth time today, hoping he doesn’t stop breathing this time.

I see you, mama, reaching out to help another mama cope with her latest crisis, while in the midst of your own.  I see you cry with her as she shares the latest regression, symptom, or concern.

I see you, mom.  I see your face light up as you talk about your child, how hard he has to work to achieve what others take for granted.  I see you, ever so patient, as you give your child time to do it on his own, ignoring the stares and the judgment.

I see you, mom, planning for a future you will not be a part of.  Making sure your absence will not be felt by your child.  Fading yourself out until you become invisible.  But its important that you know, you are not invisible.  Not to me.  I see you.  And I’m so, so proud of you.

Offended? Check yourself.

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This morning, I was sipping my coffee and reading a Facebook post by a good friend.  It was humorous and I was just about to click “like” when I read the very last line.  And it offended me.

 

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My brain quickly shifted to my amygdala and my fight or flight instincts kicked in.  I wanted to lash out.  In fact, I did comment on her post-ignoring all the parts I thought were funny and focused only on the one sentence that offended me.  About a half hour later, once I had returned to full brain function, I deleted my comment.  In the interim, I thought about the offense.  It wasn’t directly pointed at me, yet I had taken it very personally.  Why, I wondered?

Why had that, seemingly innocent comment, affected me so greatly?  In fact, if I let it, it had the power to destroy my entire day.  In my mind, I had already withdrawn my friendship from her, back to a safe distance where she couldn’t hurt me, and had foreseen my future interactions with her in a very different way.  And she was completely unaware.  This wasn’t right.  This is not how I want to pick and choose my friends, based on their complete and utter agreement with me.  I wanted to understand why I was feeling the way I was and how I could prevent myself from feeling this way in the future.

First, I recognized that I became offended because what she said made me feel that she didn’t honor my beliefs.  Why should that hurt my feelings?  Don’t I feel strongly enough about my own convictions that I don’t need anyone else’s validation?

Second, the instant I felt offended, I had given her all my power.  I had given her words the power to offend me and that made me feel powerless.

Third, the moment I felt offended, my focus shifted from her and her story to me.  I was instantly self-centered and I don’t want to live a selfish life.

And lastly, I play to an audience of ONE.  What other people believe, think, or say should not matter.  Only what my creator thinks of me matters.   When I start to concern myself with what other people think of me, I can expend a great deal of my precious energy on something I cannot control.

I think of all these pink pussy-hat wearing people protesting our President because they are offended by him.  What a waste of energy.  What a waste of time.  What a way to give away your power.

Want to live a happy, meaningful, productive life?  Here’s a couple of suggestions:

  • Believe what you believe without feeling the need for external validation
  • Let others believe what they believe without making them feel wrong
  • Remember who’s opinion really counts
  • Use your time and talents lifting others up

As the Bible says: “Do not take to heart everything people say, lest you hear your servant cursing you. For many times, also, your own heart has known that even you have cursed others” (Ecclesiastes 7:21-22).

Timing is Everything

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Happy New Year!  Now let’s get miserable!

I understand why the new year might be thought of as a good time to make a change.  It’s the end of one thing and the beginning of another.  But is it the right time for big changes?

Let’s take a look.

  1. All the build-up, anticipation, and excitement of the holiday season has just ended with a great big thud.  The festivities are over and we’re left holding the bag of crushed bows, tangled lights, and a few extra pounds.  Happiness is boxed back up for another year and we’re left with glitter and pine needles on the floor.
  2. The weather is downright harsh, if not dangerous.  A decision to start working out couldn’t come at a less-encouraging time.  No wonder this particular resolution dies somewhere in mid-February.  Enthusiasm can only carry you so far.
  3. Most of us are already blue.  S.A.D. (seasonal affective disorder) is real, especially if you live in the northern states where we are already lacking sunshine and Vitamin D.  Now deprive yourself of caffeine, sugar, and all those yummy things you gorged yourself on for the past 3 months and you’re going to feel like absolute crap.
  4. Statistically speaking, January is the #1 month for divorce.  Was it what Uncle Larry said at Thanksgiving?  Was it the brawl that broke out New Year’s eve?  Probably not.  It’s more likely that everyone is feeling horrible in general and have lost that loving feeling.

I propose that instead of making resolutions in January to exercise more, stop smoking, lose weight, or detox, we give ourselves a break.  January should be the month when we treat ourselves gently.  We allow ourselves to hibernate.  We supplement with nutrients we lack.  We bundle up when the sun is shining and go out and play.  We make crafts and try new hobbies.  We focus on our marriage and do activities that strengthen the bond.  We get together for White Elephant gift exchanges and plan gatherings with friends and family.  We deepen our faith.  We meditate.  We read new books cuddled up by the fire.  We try out new recipes.  And we plan.  We plan for how we’re going to change our minds, to change our habits, to change our lives…in SPRING.

Spring is the season of rebirth.  Spring is when we should embark on those changes we want to see.  When you really think about it, Easter makes much more sense than New Year’s.  So this year, my Easter Resolutions are as follows:

  1. Exercise more regularly.  I am creating a plan for myself and a space that supports my efforts.  Yoga in the sun is one of my most favorite things.
  2. Reduce my caffeine and sugar intake.  Easy when it’s warmer and all I want to drink is lemon water.
  3. Do a-40 day detox fast.  Lent seems like the ideal time for this.
  4. Serve more meatless meals.  When it’s warmer, I want lighter fare.  Much easier in spring than winter.
  5. Have more fun!  Sounds silly to have to list this one but I tend to work constantly, even if I’m not working, so I need to give myself permission to enjoy the journey.

Be gentle to yourself.  You’ve just survived 4 major holidays in 3 months.  It’s okay to reserve January for recuperation and recovery.  Lent starts Feb. 14 (eat your Valentine’s candy early!).  When your New Year’s resolutions fail, consider moving them to Easter.  Timing is everything.  🙂

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Permission to Exhale

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It’s been one year, 4 months, and 20 days since we’ve seen our only daughter, Rachel, and our only granddaughter, Morgan.  It was Rachel’s choice to separate herself from her entire family and to this day, we don’t really know why.  It was July 4, 2016.  Independence Day.  Rachel declared her independence from us on that day and we’ve been picking up the pieces of our shattered lives ever since.  When someone you love dies, you mourn.  There are stages of grief you move through until you eventually reach acceptance and are able to move on.  When someone you love removes themselves from your life without explanation, you never really reach acceptance.  There’s no closure.  You know that you could turn the corner in the grocery store and run into them at any time.  The possibility of them returning to your life at any second, or never, clouds your reality.  Like a fog standing between you and true happiness.

The stages of grief when someone dies are typically as follows:

  1.  Shock and Denial
  2. Pain and Guilt
  3. Anger and Bargaining
  4. Depression, Reflection, and Loneliness
  5. The Upward Turn
  6. Reconstruction and Working Through
  7. Acceptance and Hope

I have rewritten the stages of grief when someone alienates:

  1.  Shock and Confusion
  2. Guilt and Bargaining
  3. Anger and Pain
  4. Depression, self-depreciation, wallowing
  5. Detachment, Disengagement, Dispassionate
  6. Reflection and Self-Discovery (What was my role?)
  7. Rebirth

People who are living with estrangement, and have for years, tell me it gets easier.  I’m not sure if it gets easier, or if we simply have to move on for our own sanity.   There’s a part of us that has been unable to move on.  We have a real fear of erasing Rachel from our lives.  When our coffee maker needed to be replaced, I bought a new one.  Hubby walked in and I saw, and immediately understood, his reaction.  Rachel had given us that coffee maker.  Now it was gone.  “It’s in the basement.”, I told him.  “I didn’t throw it out.”.  I couldn’t throw it out.  Last night, we were discussing how old our cat is.  Rachel’s cat.  She has to be 15.  Hubby googled how long cats live.  Without saying so, I know we’re both thinking “When she dies, that’s another piece of Rachel gone.”.  Last Christmas, I couldn’t put up the tree with all the photo ornaments and homemade gifts the kids had made over the years.  Too many memories.  Too painful.  So I bought a generic box of ornaments and had a generic Christmas.  If not for Sam, I wouldn’t have even done that.  That first year without her is a blur.  I do remember crying.  A lot.  I was barely functioning.  I was trying to freeze time.  I was holding my breath.

Waiting for Rachel to return to everything she left behind is no longer an option.  Life moves on.  And so shall we.  This time in our lives has been the most painful, yet we’ve also experienced the most growth, individually and as a couple, as we ever have.  We aren’t the same people Rachel left.  And if, someday, Rachel decides to come home, she’ll come home to a stronger, closer family.   One that has saved her a seat at the table, anticipating her return.

I’m propping the door open, indefinitely, for her but I’m no longer standing there holding my breath, waiting for her to walk through it.  I’m giving myself permission to exhale.

 

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P.U.S.H.

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I was having one of those mornings.  Overwhelmed.  Emotional.  Consumed.

I dropped Sam off at school and on the way home, began having a conversation with God, out loud in my Jeep.

“Why does it have to be like this, Father?”. 

“What am I supposed to learn from this pain?”

“How can I do what you’ve called me to do, when I can’t even function?”

The conversation continued, very much one-sided.  Very much all about me and my pain.

I pulled into the parking lot of the Post Office on auto-pilot, checking the P.O. Box like I do every Friday.  The last thing I said before exiting my Jeep was this…

“Please show me what I’m supposed to do.”

I approached the building, walking with my head down so as not to make eye contact with anyone.  I can’t afford for them to see my pain.  Just as I reached for the door handle, I looked up, and what I saw stopped me in my tracks.

20171027_085316.jpgGod had answered me.

P.U.S.H.  Pray Until Something Happens.

I stood there for a moment reflecting on my morning.  Had I thanked God for my very blessed life?  Had I thanked him for blessings already on their way?  No I had not.  I had left my gratitude out of the conversation.  Was I listening for His answers?  No.  I was shutting down.  Angry at God that this one area in my life wasn’t perfect.

I got back into my Jeep with a very different perspective.  I AM grateful that even though I don’t get to see my daughter and granddaughter, I know they’re loved, healthy, and (hopefully) happy.  I AM very blessed.  I AM a cherished daughter of the almighty Father.

I fell short of completing my Bible Study homework last week.  As I shared my heartache with my table mates on Wednesday, I was asked if I had completed Day 2’s homework.  I had not.  They encouraged me to do so.  When I got home from the Post Office, I opened my Bible Study to Day 2 and it said “It’s tough to pray someone all the way through a messy, hard, complicated situation and not see answers. ”  I can certainly testify to that.  The book went on to say…”Can I speak hope into your heart with three ways to press through unanswered prayers?”  Yes, please!”

  1.  Know with confidence God hears your prayers.  1 John 5:14  This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us.
  2. Trust that prayer makes a difference, even when you don’t see the difference.  Phillipians 4:6-7  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  (one of my favorite verses)
  3. Tell fear it has no place in this conversation.  Isaiah 41:10  So do not fear, for I am with you, do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.

The final thought in Day 2’s lesson was this…Don’t forget what Jesus has done in your life thus far.  Take a moment to remember some of the works of His hands and thank Him for it.  I promise, tracing the hand of God in your life like this is good for your soul.

If you, too, are going through something that feels insurmountable, irreversible, or overwhelming (and I don’t know many who aren’t), take heart that:

  1.  You are not alone.
  2. God IS listening.
  3. You have much to be thankful for.
  4. God is working all things for your good.

And remember to P.U.S.H. through the hard times.  Pray until something happens.  ❤

 

Are you truly listening?

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Silence.  The sound can be deafening, can’t it?  Alone with our own thoughts.  No auditory input.  It can be unnerving.  There are days when I don’t have a quiet moment AT ALL.  If I’m in the car, the radio is playing.  If I’m at home, it’s the TV or the radio, or…thanks to my autistic son…it could be all of the above, plus the ipad.  Down time can be so uncomfortable, that I fill the quiet moments with my phone.  Waiting in line at the pharmacy or in the school pick up line, I find myself reaching for my phone.  I do it without thinking, most times.  This morning, I was cooking my son breakfast.  The TV was on cartoons.  As the scrambled eggs set, I grabbed my phone to check the weather forecast and the next thing I know, I’m on Facebook.  My wake up call is usually my son asking “Phone down?”  Ashamed, I put my phone away and give him my full attention.  It happens more than I’d like to admit.

And then the realization hit me.  If I struggle to make myself available to listen to someone standing right in front of me, how available am I to hear the voice of God?  I make time to read my Bible and my study guide, I make time to pray many times throughout the day-thanking him for my blessings now and yet to come, but do I make time to listen?  I get frustrated…feeling as if He isn’t listening to me but am I listening to Him? 

Don’t get me wrong, I’m always listening to something.  The TV, the radio, my Youtube playlist, audiobooks, Facebook videos, webinars, my husband, my sons, other people, but am I really listening or am I simply hearing?  Am I filling my mind, my ears, and my time with frivolity and missing the truly important stuff?

Julian Treasure presented an 8-minute TED talk on 5 Ways to Listen Better.  I encourage you to watch: https://www.ted.com/talks/julian_treasure_5_ways_to_listen_better

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Will you join me today for 5-minutes of active listening?  Turn off the radio in the car, turn off the TV, put your phone away, and simply be present.  You might be surprised at what you hear when you really listen.