Day #82 – Human Labels

This post comes from a concerned place…a place of hurt, a place of confusion, a place of concern, a place of meditation and thought.

So much has happened in our country in the past week.  Am I going to comment specifically on the Michael Brown verdict?  No.

Yes.

No.

Sort of…

Am I going to comments specifically on the intentions of Officer Wilson?  No.

Yes.

No.

Sort of…

At first, this event seems as if it has nothing to do with autism and why I write…but it does.  In so many ways – it does.

The hurt and the anger that many are facing is directly tied to what I am trying to do through this blog.

Remove labels, create understanding.

I may be white

I may be female

I may be a wife

I may be middle-class

I may have German-Swiss heritage

I may be Lutheran

I may be educated

I may be a partner

I may be funny

I may be a sister

I may be divorced (and remarried)

I may be a mother

I may be heterosexual

I may be a teacher

I may be a daughter

While all of these describe me (whew…I am awfully privileged by the way).  Above all, I am a human.

My label? Human.

Humans were made in various shapes, sizes, colors, intellects, abilities, etc. – why do we have such a difficult time respecting that?

This morning in worship my daughter read the lessons.  As usual, there is a verse that strikes me – I also usually have the ‘how ironic’ moment in what I hear on any given Sunday. From Isaiah 68:8: Yet, O LORD, you are our Father; we are the clay, and you are our potter; we are all the work of your hand.

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As she was reading I kept going back to the word ALL in that verse. ALL.  We are ALL the work.  So, when I got home I started looking further and here is what I found (feel free to skip the bulleted list when you feel like you ‘got the point’):

  • “‘Do not seek revenge or bear a grudge against anyone among your people, but love your neighbor as yourself. I am the LORD. (Leviticus 19:18)
  • But I tell you, love your enemies and pray for those who persecute you, (Matthew 5:44)
  • My command is this: Love each other as I have loved you. (John 15:12)
  • This is my command: Love each other. (John 15:17)
  • Be devoted to one another in love. Honor one another above yourselves. (Romans 12:10)
  • Let no debt remain outstanding, except the continuing debt to love one another, for whoever loves others has fulfilled the law. (Romans 13:8)
  • Love does no harm to a neighbor. Therefore love is the fulfillment of the law. (Romans 13:10)
    For the entire law is fulfilled in keeping this one command: “Love your neighbor as yourself.” (Galatians 5:14)
  • and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God. (Ephesians 5:2)
  • Now about your love for one another we do not need to write to you, for you yourselves have been taught by God to love each other. (1 Thessalonians 4:9)
  • Keep on loving one another as brothers and sisters. (Hebrews 13:1)
  • Now that you have purified yourselves by obeying the truth so that you have sincere love for each other, love one another deeply, from the heart. (1 Peter 1:22)
  • Dear friends, I am not writing you a new command but an old one, which you have had since the beginning. This old command is the message you have heard. (1 John 2:7)
  • Yet I am writing you a new command; its truth is seen in him and in you, because the darkness is passing and the true light is already shining. (1 John 2:8)
  • For this is the message you heard from the beginning: We should love one another. (1 John 3:11)
  • And this is his command: to believe in the name of his Son, Jesus Christ, and to love one another as he commanded us. (1 John 3:23)
  • Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. (1 John 4:7)
  • This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. (1 John 4:10)
  • And he has given us this command: Anyone who loves God must also love their brother and sister. (1 John 4:21)
  • And now, dear lady, I am not writing you a new command but one we have had from the beginning. I ask that we love one another. (2 John 1:5)

I am not a theologian, but I do know that as I read through these verses I didn’t find any labels. Not once does the author/narrator write/say  – love only a white, female, wife, middle-class, German-Swiss heritage, Lutheran, educated, partner, funny, sister, divorced, remarried, mother, heterosexual, teacher, daughter.

Nope – it doesn’t say that anywhere.

We are directed to love ALL others. (PERIOD).

I’m not sure when we got to thinking that it was okay to decide who (and therefore who not) was ‘worthy’ of having rights…as humans.  I’m not sure when we got so busy labeling people as this or that.

I’ve long been an advocate of human rights.  In fact, I remember in 4th grade wanted to start a club ‘against sexist’ jokes.  I’m not sure I really knew what that meant…but I knew the jokes I was hearing were wrong and hurtful.

Tucker deserves everything that any other person in this world deserves.  Does it matter the he has autism?  No and yes.  Yes, it’s part of who he is…yes, it’s important to know.  No, that label doesn’t define him.

So, this advocacy? I guess…simply strengthened by autism.

I am human.

Tucker is human.

You are human.

Just in case no one has told you today…you are a loved human that matters –  no matter what label has been arbitrarily assigned to you.

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Day #81 – Resource #8

One of the struggles I continue to have is with the ‘high-functioning’ nature of Tucker’s version of autism.  Ugh…see I have this issue…because I have a labeling issue.  So what if he is (or not) high-functioning?  He has some stuff going on.

Recently, Jerry Seinfeld came out and said, “I think, on a very drawn-out scale, I think I’m on the spectrum.”  Well…of course he is.  We all are.

I’m willing to bet that Jerry Seinfeld was a bit like Tucker as a child.  Some folks in the ASD community went ‘bananas’ at Seinfeld’s proclamation.  I didn’t…because I get it. All of us are on the spectrum somewhere in someway…it’s just a matter of how much (if any) help we need communicating our likes/dislikes/needs to others.

Sometimes I feel sad and/or guilty writing this blog because Tucker can do so much – but it doesn’t negate the fact that his version of autism is real.  I think as we (in the ASD community) work harder at differentiating ourselves we do a disservice to each other.  We’re all in this thing, together – in different ways – but together.  It’s the very thing about ASD, no child or ‘version of autism’ is the same…so instead of attacking each other in a contest of ‘who has a ‘worse’ version of autism’ how about we come together and recognize all of our struggles are the same.

A struggle of the human condition…with one goal, understanding of the human condition.

What exactly is high-functioning?  This website has been helpful to navigate our way in Tucker’s ‘version’:  www.ahany.org

The Asperger’s Association and High Functioning Autism Association website has four main goals (from their website)

  • To increase awareness and knowledge of higher functioning autism among the professionals who diagnose, treat, educate or provide services. (Autism is a spectrum disorder that varies in degree from mild to severe with a wide range of needs).
  • To attain appropriate educational programs, effective social skills training, increased social and recreational opportunities, meaningful employment, and sufficient and satisfactory independent living accommodations for those with High Functioning Autism (HFA).
  • To develop a strong network of parents supporting one another through the challenges of daily life.
  • To provide parents and professionals with a useful forum where they can exchange pertinent information.

My favorite section in this website?  ‘Articles’

In this section there are a variety of articles that you can print or forward to folks who are interested in helping children on the spectrum.  My favorite?

Grandparent Power!
How Extended Family Can Enhance the Lives of Kids on the Autism Spectrum
by Dan Coulter, the dad of a young man with Asperger Syndrome and the owner of Coulter video along with his wife Julie.
The word “family” can evoke powerful memories and emotions. Thinking of family recalls the Robert Frost line, “Home is the place where, when you have to go there, they have to take you in.” When grandparents are involved, the line could often be changed to, “…they can’t wait to take you in.”

Check it out…awesome resources!

Day #80 – Thankfulness

I’m thankful.  I’ve spent a lot of time this week thinking about thankfulness and what that means.

Sometimes we have to be thankful for things we didn’t think we would or could be thankful for.

Thankful for hurt…

Thankful for death…

Thankful for troubles…

Thankful for heartache…

As my husband says…believing in God’s plan is believing ALL OF THE TIME, not just when it’s convenient or life is going ‘fantastically.’  Believing when things are not going right, when they are not going well, when the world feels like it’s crashing down – that is true belief..  This belief leads to thankfulness.

From a scene in the recent hit, “God’s Not Dead” (which I have some issues with…but the overall message is good…so bear with me).

Sometimes the devil allows people to live a life free of trouble because he doesn’t want them turning to God. Their sin is like a jail cell, except it is all nice and comfy and there doesn’t seem to be any reason to leave. The door’s wide open. Till one day, time runs out, and the cell door slams shut, and suddenly it’s too late.

So, today I am thankful for autism.  I am thankful for a life that hasn’t been free of trouble…because that life has taught me.

It has taught me about love and the power of a mother’s love.

It has taught me about understanding and that everyone has a story.

It has taught me about patience and that we need to give people time.

It has taught me about advocacy and standing up for what you believe in.

It has taught me about unconditional loving, unconditional…no matter what.

It has taught me about kindness and that everyone is fighting a battle of some kind.

It has taught me about faith and that when all else feels lost…faith will hold you together.

It has taught me about calmness and remaining peaceful in the face of all types of adversity.

It has taught me about protecting and standing up for those who can’t always protect themselves.

It has taught me about perspective-seeking and that understanding another is the first step in loving another.

It has taught me about adversity and that my true self is show in times of adversity – so I better hold it together.

It has taught me about judgement and to feel judged for that which we cannot control is an awful, awful feeling.

It has taught me about love and the power of partner’s love that makes you feel you can do, or get through anything.

It has taught me about the importance of a story and that sharing your story can have a profound impact on another.

Thank you.  Thank you for reading our story.  Thank you for telling me (and us) about the impact of our story.  Thank you for sharing your stories with me.

 

 

Day #79 – I’m Not a Turkey

Happy Thanksgiving!

A short story for the day…

One fairly common characteristic of children on the spectrum is that they have difficulty finding the line between fact and fiction.  Ever more-so – they often don’t understand fiction or its use.  Why would you want to read/learn something that is not real?

3rd Grade…with the wonderfully, talented, beautiful Mrs Kress.

I was picking Tucker up from school the day before Thanksgiving.  She is there waiting…deep breath…something happened.

She proceeds to tell me that Tucker had a major melt-down…that he refused to do an assignment.  REFUSED as in he WOULD NOT do it.  She told me she finally gave up…but wanted me to know.

On our way home I said to Tucker…’Tucker, what exactly was the problem today?”

“What do you mean?”

“Well..Mrs. Kress said you had a bit of a difficult time today.”

“Well, yes.  She wanted me to write a story for Thanksgiving about being a turkey.”

“Okay…and the problem with that?”

“(exasperated sigh) Because mom.  I am NOT a turkey.  I am a boy.  I have NO desire to be a turkey.  Turkey’s walk around in their poop all day.  They have to stay in cages and aren’t in houses.  They do not have televisions and cannot read.  WHY would I want to be a turkey?  No way.  I am not writing about something that I have no desire to be.  I just don’t even want to imagine it.”

 

Well…there you go.

That’s spectrum business (and funny-kid business) at its finest.  Logical, sequential, non-fiction, realism…

Day #78 – Be the host(ess) with the mostess…

Are you hosting an event and there may be a child on the spectrum attending?  Do you want to be ‘human’ and make it a good experience for all? Yes, I know you are trimming turkeys, dusting shelves (that haven’t been dusted in 6 months), and cleaning toilets…

Stop for a moment.  What is this holiday about?  Family.  So…stop for a moment. STOP.

Stop cleaning, stop turkey trimming…just stop and think.  Think about all of the people attending – what could you do to make their experience awesome.  Even more so, what could you do to make sure your child on the spectrum has an AMAZING time? (Yes, I said ‘your’ – if the child is attending ‘your’ gathering…then you are part of their community.)

Preparation #1 – Read Monday’s Post Day #76 – Happy Holidays?

Preparation #2 – Read Tuesday’s Post Day #77 – For Families…

Now, let’s get started.  A dozen steps to a spectrum-friendly family gathering….please insert your child’s name wherever you find the name Tucker (and change appropriate pronouns).

Step #1 – Reach out to the family and ask the dang question(s).

  • What can I do to make this a better experience for Tucker?
  • How can I help you with Tucker?
  • I’ve done some reading.  I now understand a little more.  What changes could we make to make this more comfortable for Tucker?

Step #2 – Protect the safe place.  Understand the safe place may very well be Tucker’s saving grace.  When Tucker goes to this place leave him alone AND be his protector.  Don’t allow others to move his ‘stuff.’  Most of all…if you find him here – please leave him/her alone.  He is trying desperately to sort all of the stimuli in his brain.  I guarantee you that he is NOT being rude…in fact, he’s trying really hard not to be rude by being alone.

Step #3 – Be patient with our schedule.  If Tucker needs to eat/before or after everyone else…simply be patient.  Know that we are trying to do our best to keep him calm. If we need to leave…please just let us.  I promise WE do not want to…but we NEED to…for the sake of Tucker’s (and our own) sanity.

Step #4 – Be patient with us.  If we are trying to get Tucker to nap…it may take A LONG TIME to get his senses calmed down enough to close his  beautiful eyes.  We are not ignoring you…we are trying to help him relax…and therefore, helping your gathering be successful.

Step #5 –  Don’t give him a hard time about what he is (or not) eating.  Yes, I know how much time you spent on the squash and mashed potatoes.  Asking (or forcing) my son (in particular) to eat anything mushy will immediately cause vomiting, crying, and screaming.  No…I’m not joking.  Please…just let him be.  He will eat what he likes and when he is hungry – don’t worry – I got this, I am his parent after all.

Step #6 – Ask how you could help with a social story.  Could you send us pictures of your house (if it’s a new location).  When Tucker walks in – could you greet him specifically?  “Hello ____.  Let me show you around our house.  Here is the restroom.  Here is the refrigerator – help yourself to any drinks. Let me show you a spot I have JUST FOR YOU!  Your mom/dad said you sometimes like to have alone time.  Here it is!”  He will then recognize you as someone who loves.

Step #7 – Unless Tucker is hurting someone, please don’t try to step in and ‘correct’ his behavior.  Come get us – we are ‘professionals’ at dealing with him.  Odds are he didn’t know the rules, is feeling overwhelmed, or just doesn’t understand…allow us to teach him.

Step #8 – Please, please, please don’t talk about Tucker like we are not standing there…or like he can’t understand you.  He is more sensitive than you will ever realize.  He knows he is different…trust me, he knows.  The last thing he needs is someone who ‘loves’ him as part of the family pointing out all the ways he doesn’t ‘match.’

Step #9 – Talk with him, not at him.  Yes – Tucker will absolutely fill your head with NFL statistics.  Team percentages, player names, history, schedule knowledge…everything football.  This is his thing.  Trust me, I know you may get tired of the topic…but this is his topic.  This is the thing that he knows – this is the way he can have conversation.  Please, join him in his world.  Our children each have something – for my friend April’s son, Jack, it is WW II.  Just ask him – he’ll tell you everything you ever (and never) wanted to know.  Ask him…it will make him feel a part of your family.

Step #10 – Help us…help him.  Let our family be a safe, welcoming place for him.  Help him feel like he is a part of this family.  He already feels singled out.  He feels different at school.  He does not have many close friends. Please, please, please don’t let that carry over…he needs all of you – to love all of him.

Step #11 – Be patient with him.  He is trying.  I guarantee he is doing his very best.  This reminds me of one of my favorite poems…let us not criticize, be hostile, ridicule, or shame.  Instead, be tolerant, encouraging, offer praise, be fair, show security, grant approval, and most of all…show acceptance and friendship.

 

Step #12 – Be thankful for him. These very special children have SO much to offer, SO much to teach…we can learn SO much if we are just willing.  Be thankful for their presence in your life…I know I am so very, very thankful for everything he has taught me.

Day #77 – For Families…

I love art.  I mean…I LOVE ART.

So, I have to share this version of Edvard Munch’s The Scream.

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This is how our children feel during the holidays.  I’m sure of it.

There is simply too much input during the holidays.  Too much for all of us…but for a child on the spectrum it is the holy grail of chaos.  The food, the new faces, the smells, the textures, the noise—all input in an ‘unsafe’ space.

Here are some strategies that we have used.  For those of you reading this blog who also have children on the spectrum…PLEASE feel free to share your strategies…it’s the only way we get better.  One thing may work for us, but not for you.  It may work for you, and not us – again with the ‘no one is the same’ business for those of us who live life on the spectrum.  Here are our five major strategies for ANY large (but especially with family) gathering…

#1 – Preparation.  Our holiday preparation not only includes turkey, stuffing, pie crusts.  In fact, our preparation already began.  It began last week.  Children on the spectrum NEED schedules…and let me tell you, there is nothing like a family gathering to throw a complete wrench in the schedule.  Granted, I love these gatherings – but, boy oh boy…they are ridiculously challenging and it takes WORK.  WORK to prepare our children.  What does this mean?

  • Who will be there?
  • Sleeping arrangements (if an overnight is anticipated)
  • What time will we arrive?
  • What time will we leave?
  • What will there be to eat?
  • What will there be to drink?
  • Can he go outside?
  • Where his ‘safe place’ will be (see #2 for safe room information)
  • What is expected.

Then, we often write these things down, clearly – so he can continue to refer to the list.  This helps me do the actual preparation – the list on the refrigerator fields the questions so I can prepare Salted Nutrolls for my cousins.  Trust me…not preparing the nutrolls was not a good option one year – so I developed this system.  I can simply say, “Check the list Tucker, it’s all there.  If something is missing or you have another question let’s add it to the list.”  And we do…

#2 – Safe Place. What is a ‘safe place?’ We have taught Tucker (I’m patting myself on the back here) to recognize the signs of overload.  Heart racing, brain can’t think, clenching fists…when he senses that he goes to his safe place.  This is a previously designated location (location is also on the list above).  I learned about 4 years ago to begin ‘clearing’ this spots with the host(ess) of the event.  I would simply say, “I need a quiet place for Tucker.  He won’t bother anything of yours he just needs a place to go so he can ‘regroup.'”  Honestly, I often join him in his safe place, because I sometimes need a break too.  Hey…my dad always heads to his shop in the afternoon – maybe he needs a break too!! Here is what we do…

  • When he was smaller I had a fun sign “Tucker’s Place” I would put the sign up so people knew it was his spot.  Or I chose the spot before anyone else arrived.  He liked that because then his spot felt special.  As he got older he no longer wanted the sign (obviously he wants to ‘blend in’ more).
  • I sit with him in this spot first – so he knows it isn’t a ‘time-out, naughty’ type of spot…but a comforting, resting spot.
  • We set out his things, together.  A couple of favorite books – a special note here.  NOT new books – at least not for him.  This spot is comforting…he’s ready the entire Wimpy Kid series at least 10 times.  Over and over and over again.  These books provide solace…a storyline that he can expect.  Something that is familiar.  We also include a pencil and notepad for drawing, his Nintendo DS and earbuds.   Now we include his phone and an iPad.  All of the things that he could use to take a break, to calm, to refocus.

#3 – Sleeping Time.  We begin DAYS in advance if we know the schedules are going to get messy.  If he is experiencing a lack of sleep…everything will be much worse.  It’s difficult to begin with – so about a week before any event we take extra care to know he is getting to sleep on time.

#4 – Talk, talk, and more talk.  We talk about the holidays, the events.  We reminisce to give him a reference.  We talk about what to do if someone isn’t following the rules at a game.  We talk about what to do when we get emotional.  We talk about trust…and always, always coming to us after always, always just walking away.

#5 – Social stories.  When he was younger we created social stories together.  What are social stories?  Social stories use the child as a character experiencing the thing they are about to experience.  It gives them a frame of reference for behavior.  Below is a link to an example of a social story.  I wouldn’t use this for Tucker because he understood the concept of Thanksgiving…but needed help with all of the ‘stuff’ that comes with it.

http://www.autismspeaks.org/sites/default/files/docs/thanksgiving_social_story.pdf

How about you?  Do you have any other tricks and strategies you use to help your children get through the holidays?

Tomorrow….if you are the host/hostess with the mostess…I’ll have tips for you!

Day #76 – Happy Holidays?

Well…the time has arrived.

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A time that brings SO much happiness and joy to SO many.

A time that brings SO much worry and anxiety to SO many.

Not until I had Tucker did I realize that the holidays are a difficult time for many, many people.  This was a REALLY difficult realization for me.  I love the holidays – everything about them.  I love the people, my cousins, the food, the music, the lights, the colors, the trees, the shopping, the music – now, not quite as much.

Why?  Because every gathering is a challenge.  Every gathering means I need to plan, to think, to advocate, to play future teller…and honestly, it can be exhausting and overwhelming.

Over the course of the next four days I will write about ways to help our children (and adults) who are on the spectrum ‘deal’ with the chaos of the holidays.  So what is it about the holidays that is so difficult for our children on the spectrum? While there can be MANY issues, today I will only comment on one thing. Tomorrow and Wednesday I will provide strategies for families hosting the holiday gathering(s) and families who have a child on the spectrum.

In my advice giving about the holidays, I have found that many people (regardless of ‘spectrum status’) employ many of these strategies to make the holidays easier for children.

Today’s post is relatively short…simply because this isn’t humorous, it’s not about writing a ‘story’ or being witty- it isn’t about making the spectrum business easier or better.

It’s simple.  Too many people at our holiday gathering don’t understand our children.  They truly think our child is being obnoxious and therefore, think they have all the answers about how to ‘rear’ children correctly…

We allow too much.

We aren’t harsh enough.

We makes excuses for their behavior.

We simply need to be better parents.

Well, here is what we know – we know autism diagnoses is on the rise.  On Mach 27, 2014 the Centers for Disease Control and Prevention released new data on the prevalence of autism in the United State.  This study identified 1 in 68 children as having autism spectrum disorder.  This equates to 1 in 42 boys and 1 in 189 girls.

Autism, in its current form, is relatively new…

So advocating for understanding can be  (or IS) like banging your head against a wall or paddling upstream or choose any other idiom.

To these folks…here is what I have to say.  I must warn you – these are not tempered words.

You have not raised my child.  You have not been black and blue from holding him down for a nap.  You have not felt the sting of the looks.  You have not sat through testing.  You have not laughed and cried and been partially insane in the way I have.  You have not worried and prayed about the future in the way I have.  All of us have different stories – so please, don’t judge mine.  I don’t judge yours.

You have not raised my child.  If you have raised a child on the spectrum, you immediately understand.  If you have taught a child on the spectrum, you moderately understand.  If you have strong empathy and have heard stories about a child on the spectrum, you will get it. Please have patience…please try to understand how incredibly difficult this day is for him.  If you cannot, then just ignore him.  Ignore me.  That is fine – but please don’t try to give me advice…because you really do not understand…and by giving me your ‘tried and true methods of child-rearing’ you are showing me that you don’t really even care to TRY to understand.

If you want to TRY to understand…read the next two days.

Period.

 

Day #75 – Go and Do Likewise

Something has been on my mind lately.  I quickly commented this past week on my Facebook page…but I’ve been mulling it over in my brain ever since.

This week the Vatican held its first ever conference on Autism.  The “Person with Autism Spectrum Disorders:  Animating Hope” was held this week with Autism Speaks co-founders Bob and Suzanne Wright speaking.

The conference is was the largest of its kind gathering more than 650 experts from 57 countries.

“The Rev. P. Augusto Chendi of the Pontifical Council for Health Care Workers told reporters the aim of the conference and the papal audience is to “help break the isolation, and in many cases the stigma, that surrounds people affected by autistic spectrum disorders.”

In the spirit of inclusion and volunteerism, Pope Francis will call on the world’s 1.2 billion Catholics to embrace people who have autism at the conference. This is the latest example of his efforts to make the church a “home for all” by rethinking social issues and the role of science, and by embracing people who are marginalized.”  (http://www.autismspeaks.org/news/news-item/vatican-holds-first-ever-conference-autism)

Then, on Wednesday evening Tucker’s confirmation class read and discussed the story of the Good Samaritan.  Need a reminder? From Luke 10:25-37…

25 On one occasion an expert in the law stood up to test Jesus. “Teacher,” he asked, “what must I do to inherit eternal life?” “What is written in the Law?” he replied. “How do you read it?”

27 He answered, “‘Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind’; and, ‘Love your neighbor as yourself.’”

28 “You have answered correctly,” Jesus replied. “Do this and you will live.” But he wanted to justify himself, so he asked Jesus, “And who is my neighbor?”

30 In reply Jesus said: “A man was going down from Jerusalem to Jericho, when he was attacked by robbers. They stripped him of his clothes, beat him and went away, leaving him half dead. 31 A priest happened to be going down the same road, and when he saw the man, he passed by on the other side.32 So too, a Levite, when he came to the place and saw him, passed by on the other side. 33 But a Samaritan, as he traveled, came where the man was; and when he saw him, he took pity on him. 34 He went to him and bandaged his wounds, pouring on oil and wine. Then he put the man on his own donkey, brought him to an inn and took care of him. 35 The next day he took out two denarii[c] and gave them to the innkeeper. ‘Look after him,’ he said, ‘and when I return, I will reimburse you for any extra expense you may have.’

36 “Which of these three do you think was a neighbor to the man who fell into the hands of robbers?”

37 The expert in the law replied, “The one who had mercy on him.”

Jesus told him, “Go and do likewise.”

Go and do likewise.  I’m not Roman Catholic…but man, I am digging this Pope.  I also feel like he should read Day #30 – Social Cues, Day #33 – Why Me, and Day #68 – Faith.

What do I love most about this?

Go and do likewise.  Places and people of worship talking about how to be kinder to those with special needs (who consequently don’t ‘behave’ in church) is right up my ally.  We have been very blessed to be in a congregation where people are loving and accepting – AND MOST OF ALL...willing to learn.

Show Mercy. There is a strange irony in all of this.  Families who have a child with some extra stuff going on need more support, more love, more kindness, more mercy.  They often need church…but church folks aren’t always so welcoming.

Go and do likewise.  How do we as Christians show more support, more love, more kindness, and more mercy?

Show mercy through teaching. Teach others about the why and the what.

Go and do likewise.  Teach leaders how to show support in their congregations – reach out to these families.

Show mercy.  Teach and remind leaders that love is a VERB.  It’s something we do…it’s action, not simply something we say.

Go and do likewise.  Teach others strategies to show kindness by not judging, not staring – but instead understanding and asking.

Show mercy…by teaching and doing likewise.

Go-and-do-likewise

For more information on this please see these links:

Day #74 – Resource #7

Check out http://www.autismweb.com – one of my many favorite websites.  Yes, I know it appears as if I have many ‘favorite’ websites…but they are(have) been helpful in our time navigating the perilous spectrum world.

Why?

Because this website is RIDICULOUSLY easy to navigate.  My favorite?  The message board option.  This is an area where anyone interested in autism can post and answer questions while sharing resources.

The topics include:  general support, education, technology, diet/biomedical treatments, studies, legislation, politics, recipes for special diets, and book reviews.

Be sure to check in for tomorrow’s post…it’s a good one for all of you church-going folks.

 

Day #73 -Friday Funny…a MUST read….

Keep laughing…we just have to keep laughing.  I learned this fairly quickly.  We HAVE to keep laughing.  Laugh at the craziness of it all.  Laugh at how stinkin’ weird the spectrum business is…when you think you have it figured out and then WHAMMO you have no idea.

Really…there are two choices.  Laugh or cry.  Crying and complaining certainly won’t change anything and it will make you feel worse (although it definitely has its place as well).  So, laugh.  Laugh at it all.  Laughing will make you feel better.  I promise, it will.

It will feel mean at times…to laugh at your child.  So, for goodness sake – don’t do it in front of them.

One of my favorite Tucker stories….

First, understand that many children on the spectrum lack common sense…like ALL OF IT.  They will do anything and everything unless they are told not to – and not just told, but provided a full explanation of why said thing is not a good idea.  They honestly lack the ability to think in ‘If I do this…..then this will happen’ terms.  Parenting is tough – because of this.  I have found that I cannot get angry the first time Tucker does anything, no matter how much damage…because he simply cannot ‘think it through.’

When he was 10, I went into the bathroom after his shower.

The floor was covered in water.  His bicycle helmet AND football are in the shower.

WTF?  Deep breath mom…Goosfraba

I go downstairs to his room.

“Tucker, do you have any idea why there is a small lake in the bathroom?  Do you have any idea why your football and bike helmet are still in the shower?”

“Oh yeah…

Really?!?!  You do…nonchalantly saying ‘Oh yeah’ like it’s no big deal?!?!  

Well…I was standing in the shower thinking about football.  You know I think about football all of the time?

Well aware of that, thanks.  I nod and say, ‘yes.’

So I was thinking about when I get to play for the Go-Hawks when I’m in High School.  I think I’ll be tall enough that I could maybe play tight end…so I was thinking about catching.  But I also know I’ll be so big that I’ll probably only get to play on the line.  So, I was also thinking about intercepting.

I’m thinking about all of the detail and focus he adds. I respond, “Yes.”

Then I was thinking about rain.  You know it rained today?  So, I was thinking about how hard it would be to catch the ball in the rain.  So, I got out of the shower to get my football so I could practice in the rain…because you know the shower is like rain.

I’m now positive this is why the floor was wet – he certainly did not think of closing the curtain…he was focused on the football.  I nod and say, “Oh…yeah…keep going.”

So, I got back in the shower and started practicing. Then I almost slipped and it really scared me.  But I wanted to keep practicing.  So then I got out and got my bike helmet.

I’m now positive this is why the floor was doubly wet – he certainly did not think of closing the curtain…he’s focused on the bike helmet.  Wait…what?  His bike helmet…so his naked body traveled all the way through the house and into the garage…all why the shower was running and curtain open.  I take a deep breath I nod and say, “Oh…yeah…keep going.”

Oh, well that’s all.  So, I practiced catching in the rain and then got my helmet because I didn’t want you to find me with my head cracked open and blood gushing out in the shower. That’s all.”

That’s all?? Seriously?  What do you say to that?   That’s spectrum business all the way around….

#1 – I never told him to NOT play football in the shower – so it seems perfectly acceptable.
#2 – He’s planning ahead (both blood gushing and high school).
#3 – So focused on footballs and bike helmets that he leaves shower curtains wide open.
#4 – Even after confronted, he doesn’t recognize why this behavior was ‘wrong’ (or was it?!?!?!)

I took a deep breath, kissed him, told him I loved him, informed him that we have to be sure to keep the curtain closed so water doesn’t escape, and walked out of his room. I went upstairs to begin sopping up the bathroom floor…using 10 bath towels.  Yes, there was that much water – I was beyond frustrated, a tear began forming…then I burst out laughing.  I guess we actually have three choices…

Laugh

Cry

Laugh and Cry.

Seriously.  This spectrum stuff is funny and frustrating…here I am, hands and knees, cleaning up a small pond of water.  I begin to picture my son, naked – except bike helmet and football strategically tucked in his arm in this very space.

I’ve often thought we need an Improv Troupe for families with children on the spectrum – to tell stories like these.  Then last spring a friend sent me this:

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Yeah…you can’t read it…so here it is:

http://siouxcityjournal.com/lifestyles/health-med-fit/health/what-s-so-funny-plenty-for-parents-of-autistic-kids/article_1ff99183-ed52-5e12-a1c1-edcbfc9a2e7e.html

An excerpt…

As music played, Long walked to the mic in a lime-green hoodie. She told a story about visiting McDonald’s with her husband, Scott, and their 11-year-old autistic son, Dakota. While Dakota doesn’t talk, Long explained, he does love to rub people’s skin.

“He’ll rub your arms or your back,” she said. “Any warm skin. He just loves it. So we’re at McDonald’s (Play Place) and he’s doing great. But pretty soon he starts rubbing this lady’s arm, and she’s turning redder and redder.

“It’s summertime, and she’s got this huge chest, and a very low-cut top. And he just reaches in and grabs this woman’s boob. And he just starts ruub-bin’ … and I don’t know what to do. I’m like, ‘Scott?’ And he’s like, ‘What? You want me to go grab the other one?'”

The dozen or so people in the room exploded with laughter. A smiling Long took it all in.

“Note to self,” she seemed to be thinking. “The boob joke kills!”

Seriously, you can’t make some of this sh*t up – this stuff is so stinking funny….and not.  But, if you don’t laugh you’ll spend your lifetime in tears and  depression.

Laugh or cry. Keep on laughing…

This past weekend a friend sent me a message, they didn’t want to offend me but thought I would find this meme funny.

image (2)

Funny?  Seriously?  I immediately forwarded it on to my husband and my bonus son who were on the other side of the kitchen counter.

I nearly wet my pants from laughing….so did my husband….and so did Tucker’s bonus brother.

All of us…

we look at each other and then…

we look over at Tucker who is on the iPad watching some YouTube video….

For the bazillionth time.

Keep laughing….

P.S.  There is still a football in the shower.