World Autism Awareness Day, 2017

April 2nd is World Autism Awareness Day.  I announced it to my fourteen year old autistic daughter this morning as I woke her up for church.  In the past we have embraced this day as a day to ask questions about her autism and for us to celebrate the wonderful young woman she is.

Today was different.  Today she proclaims that she only has a “little problem” with autism and doesn’t want to talk about it or acknowledge it in any way.

I get it.  She is fourteen now, and although she is clearly emotionally younger than her chronological age, she IS starting to exhibit some pretty normal teenage behaviors – one of them being a desire to blend in, to not be seen as different.  Sometimes she can do this.  Any stranger looking at her in the store or on the street may not even know anything about her is different.  The “classic” autism behaviors that marked her out as a young child – the flapping, stimming, spinning, poor eye contact – are mostly gone from us even though at times her eye contact is still not the best.  The biggest issue she faces is her speech, but you wouldn’t know that unless you were trying to have a conversation with her.  And to meet her casually you wouldn’t know, unless you have a conversation, that academically she is well below her peers.

The struggle we face now is her believing that she can do things that we know she CANNOT do.  When she tried out for the lead in her middle school play, we KNEW she wasn’t capable of handling the role, but in consultation with the drama teacher, we let her try out so she could experience failure.  When she wanted to be on the volleyball team, despite being very uncoordinated and unathletic, we let her try out (in consultation with the volleyball coach), again so she could experience failure.  Wonderfully, the volleyball coach made her a team “manager” so that she could attend the games as a helper, and she loved it.

Last month she wanted to try out for the softball team, which again, seemed ridiculous since she is uncoordinated, unathletic, and hasn’t picked up a ball or bat since she played t-ball in her special ed program as a 1st or 2nd grader.  I was actually afraid she’d get hurt.  Girls at the 7th and 8th grade level throw and hit hard and when the ball comes at you, you need quick reflexes.  I explained to her as gently but as honestly as I could that I didn’t think trying out would be a good idea because she could get hurt, and that she would be competing against girls who had been playing for years.  She was NOT happy.

I am so grateful that she has come so far.  I am thankful that she is able to be in a special education classroom in a typical school, and for her many interactions with her typical peers.  I am thankful that she has a wonderful self-image.  I know from my older daughter (and from my own experience) that many adolescents suffer from a very low opinion of themselves, believing they’re ugly, stupid, fat, etc… and she has little to none of this.  But I AM concerned that this normal desire to “fit in,” indeed her BELIEF that she DOES fit in – even though she clearly has problems – will cause her pain.

Every mom wants to spare their kids pain if possible.  I feel the same about my other two children.  But my protectiveness of her is greater because her innocence is greater.  She is vulnerable and she doesn’t know it.  She may not want to remember World Autism Awareness Day, but I do, because I still see it in her even if she doesn’t.  And I still see the world as a scary place for her, and want the world to be “aware” of how far we still have to go until it isn’t.

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The Santa thing

I remember when I “found out” about Santa.  I must have been about 9 or 10 years old.  My 17 year old daughter figured it out at around the same age as I did, and my 10 year old son has made some “remarks” about Santa, but hasn’t come right out and asked or made any declarations.  I think he wants to play along, thinking maybe he’ll get more stuff as long as he pretends (he’s smart like that, although it would NOT be a factor in our gift giving).  Anyway…

My middle child, my daughter with autism, will be 14 years old in a few days, is in 8th grade, and still (until tonight) believed in Santa.  Wholeheartedly.  Most people with autism (Autism Spectrum Disorder or ASD), are very literal thinkers, and my daughter is no exception.  But in certain areas, like Santa (and the Easter Bunny, tooth fairy etc…) she has been able to suspend that literal thinking.  Perhaps it’s because she is also cognitively delayed (very low IQ). I don’t know.

If she were in a special education school, surrounded by like minded peers, I would not have been concerned.  But while she is indeed in a special education class, that class is in a TYPICAL school, and she has homeroom, gym, art and music with typical peers. The closer we have gotten to Christmas, the more she’s been wondering aloud what Santa is going to bring her, and what she wants from Santa.  I know talking like this in groups of typical 8th graders is stigmatizing for her without her even knowing or understanding.  She’s “different” enough, I don’t want this to impact on her ability to socialize and be accepted by her peers.  So I resolved I would talk with her about it.  And I was nervous as hell.  I wanted to tell her the truth, but I wanted to tell her in such a way that she wouldn’t feel bad about basically being lied to all her life (and I know one autistic child in particular who had this very reaction). I wanted her to feel “grown up” in learning something special.  That’s the approach I took.

I told her I was going to share a special grown up secret with her now that she was going to be fourteen.  I talked about the historical figure of St. Nicholas (which our kids know about since we’re “churchy” people) and how after he died, people wanted to continue in his example of generosity, and even up to today parents enjoy being St. Nicholas for their children.  I then explained that her father and I were being Santa for her and her siblings in the spirit of St. Nicholas.  I infused this whole talk with excitement for her that she not only knew a special secret, but could be a part of “knowing” with all the other grown ups, but I also told her that knowing the secret was a serious thing.  I explained that now she was a part of keeping the magic and memory of St. Nicholas and Santa alive for little children, and that she must never tell the secret to little ones. She could even help be Santa now!

It seems to have gone over fine.  She didn’t cry.  She didn’t even frown.  I told her it was okay to be sad if that’s how she felt, and she said she felt “tiny tiny” sad, but mostly happy that she knew a grown up secret.  Then she asked about her little brother.  I told her I wasn’t sure about him, so that until I was sure, she should not say anything to him.  She seemed REALLY pleased about maybe knowing something that he didn’t!  (typical sibling stuff there!)

I never thought I would have to sit down and have this kind of conversation with one of my kids.  I always assumed they’d figure it out eventually.  But with autism, you can never assume anything.

co-parenting

My husband and I have been married for almost 22 years.  In this time we have known great highs and devastating lows.  We have known times of peace and times of anxiety and tension.  I think, by far, the greatest time of tension that we have experienced as a couple have been the past few years parenting our now 17 year old daughter.

Parenting an older adolescent is a whole different universe than parenting an infant, or toddler or young child.  The issues then are very much centered around physical safety:  baby-proofing, making sure they don’t run out in the street, or wander away from you at the mall.  Parenting an older teenager is about safety too, but the game is utterly different.  Instead of baby-proofing, you wonder if the group they’re with will be drinking or doing drugs.  Instead of keeping them from running in the street, you’re praying they don’t get an accident while they’re out with the car.  Instead of wandering away in a crowd, you’re terrified they (or someone they’re with) will do something incredibly stupid or dangerous (or both).

And instead of tucking them in at night, you’re worried about them picking the kind of major in college that will enable them to get a decent job.  Instead of tucking them in at night, you’re trying to prepare them to be without you.  To fly solo.  It’s about finding the balance between holding on too tight so that they’re unprepared, and letting go too quickly or at the “wrong” time so they crash.

I’m spending a lot of time feeling afraid.  But I think I’m coping better than my husband, who is just plain terrified.  Because of my childhood, I tend to err on the side of freedom, while he errs on the side of control.  As a result, we’ve had some pretty interesting disagreements and discussions over the past year or so.  As I said, there are times when the tension is THICK – times when I think he’s suffocating her, and he thinks I’m irresponsible.

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I never expected to be fighting over differing parenting styles.  It’s been a bit of a shock and very disconcerting.  And of course the “truth,” the “right” way to go, is somewhere in between.  But there’s no formula for figuring out where that happy middle is.  It all feels like such a roll of the dice – which only adds to my fear and his terror.

I find myself sometimes wishing I didn’t have to co-parent.  It would be so much easier if I didn’t need to consult my husband or compromise or admit when I’m wrong.  But I know that’s just fantasizing to relieve the tension.  I know single parents.  And I know single parenting has its own tensions and fears and is HARD.   I knew parenting would be hard, but I had no idea HOW hard, and no idea the toll it could take on a relationship.  When divorce statistics are thrown around, you always hear about money being a source of stress, but I wonder how much having an adolescent figures into divorce rates?  Not that we’re going that route BELIEVE ME – I LOVE my husband, and like I said, my fantasy of being a solo parent is just that – a fantasy to escape the hard work of dialogue, understanding, and compromise. “Opposites attract” sounds nice, but the reality of it can be… complicated.

I never thought about parenting styles when I had children.  And I guess you cannot possibly know what kind of parent you will be to your adolescents until you get there.  It’s not something I think people generally talk about when they’re falling in love and think about having children together.  I know my husband and I certainly didn’t talk about how we would handle our hypothetical teenage daughter wanting to drive an hour to a hypothetical concert with her friends.  And I know that how I act in the reality is often different than I ever imagined it.

My daughter has been in therapy since the spring, and I think her therapist is excellent.  One of the reasons I feel this way is because she’s spending time with all three of us: my daughter alone, my daughter and I, my daughter and my husband, and my husband and myself.  She’s guiding us through some of our confusion and fear and tension in parenting.  I don’t think we’ll be able to work our fears away (I don’t think that’s possible for anyone who takes parenting seriously), but hopefully we’ll cope with them a little better, and also be able to work through some of the tension in our parenting styles. Less tension between the two of us around the last years our daughter is home would be a good thing.

Anyone else out there go through this?

 

facing the monster

This week I finally faced down the big bad monster.

A few months ago I wrote this post about my experience getting my first ever ticket for anything.  Two days after my 50th birthday, riding a wave of good self-esteem, it was as if I’d gotten into a headlong collision with a tractor trailer.  Really.

I know it sounds very over dramatic, and compared to everything in my life that HAS or COULD go wrong, getting a ticket should not have been a big deal.  But it was. A HUGE deal.  Not the ticket in and of itself, but the experience of it, which I described in the earlier post.

I had some decisions to make.  I was so tempted to just pay it and move on with my life.  That would’ve been the easiest thing to do even though it would have meant points on my license and the possibility of my insurance premium rising.  Finances are tight, and my sense of guilt at being “bad” and getting “caught” led me to want to throw myself on the mercy of the court.  But – even more than that, I was so shaken by my encounter with the officer, I felt like I needed to face him again and not feel so weak or afraid.  My hands and body literally shook as I signed the form that declared my plea “not guilty.” And then I waited to hear about my court date.

anxiety_0Overall I’ve been doing ok processing the experience, although I must say that I have had waves of anxiety about it at times.  It’s been a kind of free-floating anxiety because I didn’t know when it would be resolved, so I was living with this question mark over my head and on my shoulders.  It’s been taking up a lot of space in my thoughts and worries.  Fighting off the bad girl feelings.  I have had moments thinking about it that I have felt very weak and vulnerable – two feelings I despise.  When you grow up in an abusive/alcoholic home the two things you do NOT want to feel are weak and vulnerable.  You want to disappear from view, or be a strong superhero.

Well, a few weeks ago I got a letter from the court telling me my appearance would be on May 4th – so I had weeks to psych myself up for it.  I was tempted once more to just drop it, and go with whatever the court decided, saving myself from having to face the police officer who wouldn’t even look me in the eye when he handed me the ticket.  (Really, he never made direct eye contact with me.  If he were in a line-up I wouldn’t have been able to pick him out.)  Also, because of the authority issues I described when I got the ticket, he had become larger than life.  I didn’t want to face him.  But I knew it was important.  I needed to face the monster.

It was much different than I expected.  I’ve never been to court before except when I was picked for jury duty and when I divorced my first husband.  As I drove to the courthouse my heart was racing and I had to do a lot of positive self-talk.  “It will be alright.  You’ll be fine.”  I repeated Jesus’ words from a few weeks ago in worship reading:  “Peace be with you.”  “Peace.”  I continued this as I walked through the town hall and courthouse and went through the metal detector and was directed by the court’s officer to the corner of the courtroom where THE officer was standing.  There he was, the monster that wreaked havoc with my mental stability and self-esteem.  THERE HE WAS.

As I walked over to the officer – as I went to face the man who became a bully to me – I felt a wave of panic, and had to do a lot more self-talk to present myself in a respectful but strong manner.  This was the reality…  He didn’t look as tall as I remembered (which is logical since in my only other encounter with him I was sitting down and he was standing up).  He still didn’t look at me straight on, more like a side-glance, but his features didn’t seem as harsh (perhaps because I was seeing him in a fully lighted room and not outside in the dark).  He actually looked kind of SHY.  He also had a bit of a slouch to his shoulders.  Even with his uniform he didn’t seem threatening at all.  It was all a quite pleasant let-down.

He quickly asked me what he gave me the ticket for, I told him, and he responded with a lesser charge, which would NOT include points on my license.  And I quickly agreed.  After this I had time to sit and watch those ahead of me go before the judge, so I knew how to respond when it was my turn to walk up to the podium.  The sitting and waiting my turn was the longest part.  My brief conversation with the officer and my time before the judge?  Maybe five minutes.

When I walked out of the court my legs were shaky and I felt like I could’ve cried – FROM RELIEF.  All the build-up of five months was now gone.  I felt tired and spent.  I went home, took off my dressy court clothes, put my pajamas back on, and went to bed for a much needed nap.

I faced the monster – who really wasn’t a monster at all.  And I never would have known that if I ran away from the situation and taken the easy way out.  I’m glad I did it.  I just wish I didn’t need to.  I wish I didn’t have such issues with vulnerability and authority and power and control and anxiety.  But I do.  I’m working on them though – and facing a monster is a big step.  A big deal.

you’ve come a long way baby

Sometimes in the midst of day to day life we lose sight of the big picture.  We focus on the annoyances, and how far we’ve yet to go.  I know I can get caught up in that.  It’s hard to relish the present when you look at the expanse of the road ahead.  But sometimes, if we’re lucky, we pay enough attention to realize how far we’ve COME, and that’s amazing because it can give us renewed energy to keep on keeping on.

This happened today.  I brought my 13 year old autistic daughter for her yearly physical.  We were seeing a new pediatrician in the office, so it took the doctor a little while to develop her own relationship with my daughter.  I go to a practice that has a good number of special kids, so it didn’t worry me.  The physical exam and her conversation with my daughter (with a little translating from me) went well.  I appreciated that even when my daughter was having a hard time explaining herself the doctor kept her gaze fixed on my girl.  Any special needs parent will tell you how disheartening it is when people look past our kids to us as if our kids aren’t even in the room.  Anyway…

Before we left my daughter was going to get a shot.  I didn’t tell her beforehand because I didn’t want to stress her unnecessarily, and the minute I did tell her the tears started welling up and I felt a sense of panic.  The last time she needed a shot (2 years ago) it took THREE of us to hold her down while the nurse gave her the needle.  I wasn’t sure WHAT would happen today.  She’s made so much progress overall, but I could see panic in HER eyes at the same time as I was feeling it in my own body.

I was doing my best to reassure her.  “You can do this!  One, two three and it will be over.”  “It’ll only hurt for a minute I promise.”  “Take a deep breath, it’s ok.”

She was trying SO hard not to sob and yell – I could see it in her face as it contorted and the tears came.  This could be very bad.  If two years ago it took three of us to hold her down, what would happen NOW?  She’s two years older and two years bigger – if she fought us it could get ugly.  I don’t want to torture my kid.

Then something truly amazing happened.

She said to me, “My friend at school said, ‘If you have to get a shot hug your parent tight and it won’t hurt so bad.’  Mommy, will you hug me tight?

(I almost choked.  You could’ve knocked me over with a feather.  But I quickly caught myself because if I started to cry it might scare her, even though they would’ve been happy tears.)

“Yes honey, I will hug you as tight as I can.”

Then the nurse came in with the needle and my girl cried and hugged me and I held her with all I had. And it was over one, two, three.  Just me, my girl and the nurse.

We let go, both of us smiled the BIGGEST smiles, I gave her a high-five and promised her her favorite take out dinner as a reward for being so brave.

Two years ago it took THREE of us to hold her down.  Today she just needed a hug.

You’ve come a LONG way baby.  Yes, you have.

hodgepodge

It’s been over a month of silence here and for that I apologize.  There’s been a lot going on, but not the kind of stuff that merits a whole post – so perhaps one post with a lot of little things will have to do – hence the title “hodgepodge.”

My 13 year old autistic daughter had her yearly IEP (Individual Education Plan) meeting a few weeks ago and she’s doing brilliantly.  She started in a new program back in September and has really flourished. She’s doing so well, in fact, that she’s going to “graduate” from occupational therapy this coming September.  It  was kind of a shock when her occupational therapist suggested it, but it seems the right thing to do.  The tasks she struggles with are not the kind that they help with at school (like maneuvering her bra clasp).  Most of O.T. in the school setting is focused on handwriting, and she has become a pro.  Her O.T. has known her for years and we had the chance to reminisce about the days when we wondered if she would EVER write.  The breakthrough for her came with cursive.  When her teachers introduced that she took to it like a fish to water.  She no longer had to struggle with lifting up and putting down the pencil with each letter – it’s like cursive was made just for her.  Anyway… in September her twice-weekly O.T. sessions will end, and the O.T. will do monthly check-ins with her teacher just to make sure she isn’t regressing in any way.  Great job!

Sweet sixteen is continuing her dream of wanting to be a professional wrestler.  I had hoped this was a passing phase, but it doesn’t look like it.  How I, as a peace-loving and generally gentle soul, ended up with a daughter who loves to fight and punch and throw people around I don’t know (ok, maybe I have a clue or two, but that’s for another post).  Our children are their own people, that’s for sure.  I spend a lot of time taking her to training (wrestling, jiu jitsu & MMA) and trying to understand her need for violence (albeit controlled, “acceptable” violence).

My nine year old son is getting into Minecraft.  I’ve written that he likes to play with dolls and that this makes him feel very insecure since he doesn’t want his friends to know.  Even at nine he’s aware of gender pressures, which is sad.  But Minecraft is generally a boy thing, so at least now he’ll have something in common with some of the other boys at school, since he also isn’t very athletic.

I don’t generally write about my husband since he’s a really private person, but I will share that pressure at work has been exceptionally high lately and money has been a huge concern, so he’s been EXTREMELY stressed and unhappy.  That’s about all I can write, although I wish I could share more because it would be therapeutic for me – but out of respect for him I need to just stop here.

As for me?  My husband’s stress has been rubbing off.  I mean, how can you see someone you love struggle and not be stressed about it?  I’ve also continued to have problems with my fibroids (I have two whoppers in my uterus) – almost constant discomfort, although not what I would call “pain.”  About six years ago I had lost all my baby weight and ran almost everyday and felt really great about my body. Since this fibroid/menopause junk started about three years ago running is uncomfortable – even sitting still can be uncomfortable – and I’ve gained all that weight back.  I’m tired of it and I’ve had enough.  I had my yearly check-up with the gynecologist last week and go for a pelvic ultrasound next week to check on the fibroids.  I also have my yearly check up with my primary doctor coming up and will discuss things with her too.  I’m trying to formulate a course of treatment since it seems like my body is taking its bloody time with menopause (pun intended).   I’ll fill you in when I develop a plan.

With all that’s going on I’m surprised I’m in a generally good place psychologically, even with the stress of my husband’s situation and my physical health.  I’ve been off my psychiatric medication for a year now, and other than the bad day or bad week which is part of LIFE, I’ve been steady.  I am VIGILANT in monitoring myself though – how I’m eating, how I’m sleeping, how much I laugh, how much I cry, my attitude towards the tasks of daily living etc…

Can’t take care of anyone else if I’m not taking care of myself.  That’s true for all of us.  I hope you all are taking care of yourselves.

What have you been up to?

4th Sunday after the Epiphany, 2016

4th Sunday after the Epiphany, year C, 2016 (preached 1/31/16)

first reading:  Jeremiah 1:4-10

Psalm 71:1-6

second reading:  1 Corinthians 13:1-13

gospel reading:  Luke 4:21-30


Our second reading for today is so famous that if we’re not careful we could daydream right through it.

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The LOVE chapter.  It’s become a standard reading at weddings as counsel on how spouses should treat one another.

But St. Paul wasn’t writing this “love chapter” to newlywed couples.  He was writing this to a broken community – a community that was broken, fighting, fractured.  The Corinthians were in trouble.  Paul was telling them how to work through their disagreements and jostling for power so they didn’t destroy themselves.

This reading isn’t about romantic love at all.  It’s about a state of being.  It’s about how we live our lives. This kind of love isn’t directed at an individual, it’s something we have in ourselves that flows out of us. For while I’ve said over and over that “love” is a verb, “love” is also a quality that we exude.

And love isn’t something we can manufacture ourselves.  When the pastor preached at my wedding, (not on this reading – we chose something different), he was clear to tell my husband and I that any kind of love we think we can “make” is a pitiful kind of love.

REAL love doesn’t come from us at all, it only flows through us to others.  Real love comes from God.  

  • In 1 John 4:7 we read, “Beloved, let us love one another, for love is from God; and everyone who loves is born of God and knows God.”
  • The gospel of John tells us the reason Jesus was born among us was love.  “For God so loved the world…”
  • And Jesus gives us the new command to carry this love that comes from God through him – to one another.  “A new command I give you:  Love one another.  As I have loved you, so you must also love one another” (John 13:34).

And not only that, but this – Jesus also calls us to love our enemies!  We like to forget this inconvenient teaching, but it’s part of the sermon on the mount in Matthew 5:44,46 – “But I say to you, love your enemies and pray for those who persecute you… For if you love those who lo e you what reward to you have?  Do not even the tax collectors do the same?”  The Corinthians were certainly dealing with enemies outside of, and even within, their community.

So, like I said, this chapter has very little to do with romantic love, and everything to do with how we conduct ourselves – our demeanor, our personality.  It is meant for each one of us as believers.  St. Paul wrote this for you and me and all who follow Jesus.  It speaks the truth about how we are to BE in the world as believers, and part of that is how we treat one another.

And St. Paul is wise here, because he not only tells us what love looks like, he tells us what love does NOT look like. First, what love IS:  it is

  1. patient,
  2. kind,
  3. rejoicing in truth
  4. bears,
  5. believes,
  6. hopes, and
  7. endures all things.
  8. It is also eternal because it “never ends.”

What love is NOT:  it is not

  1. envious
  2. boastful,
  3. arrogant,
  4. rude,
  5. insistent,
  6. irritable,
  7. resentful,
  8. or rejoicing in wrongdoing.

This is hard work.  Love is hard work.  It is a commitment that goes beyond hugs and kisses, candy hearts and Hallmark cards.

  • Try being patient with a three year old whose new mantra is “Mommy, Mommy, Mommy, Mommy…”
  • Try not being irritable when you’ve had a horrible night’s sleep and a full day of things to do ahead of you.
  • Try not being envious of your neighbor as they fly off on their next vacation while you’re just trying to pay your monthly bills.
  • Try being kind when you have to spend the next two hours with someone who grates on your last nerve.

THIS is what St. Paul is talking about.  This is how you and I are called to live and conduct ourselves with our loved ones and NOT loved ones.

Actually it’s impossible.  Jesus is the ideal for 1 Corinthians 13, you and I are just poor imitations.  It’s a perfect example of Lutheran theology’s “saint and sinner.”  We try, we fail, we try again, we fail, we try again, and so on and so on – with our only fuel for going on being God’s forgiveness – God’s love.

So why love?  Why work so hard to let the love that is in us flow out?  Why try at something when we know we’ll never be perfect at it?  Because, although we know we’ll never love perfectly, love gives our lives meaning, purpose and shape.  It DEFINES us.

It defines us because love is the eternal thing that binds us to God and one another.

All the trappings with which we surround ourselves, even the gifts that God has given us to serve – these are only temporary comforts, successes and talents.

St. Paul opens and closes this chapter with reminding us that our earthly power and success and talent are just just noisy and clumsy without love, and that one day all those things will pass away, just like us. All our earthly gifts will end.  Love will not.  It is only love that carries on – the love from God through Jesus to you and me, and from you and me to each other.

So why love?  Because there is really no other way for us to BE.

It’s work, and it’s painful sometimes – to love does mean to grieve – but the alternative is living death.

Creation came from love, Jesus came from love – Jesus IS love – and Jesus calls us to love.  It’s as simple, and as complicated, as that.

Love is the hardest, but as St. Paul wrote, it’s also the “greatest.”

AMEN.