Father’s Day is coming…

And our book would be a great gift for any care giving dads you know!

book-cover

 

Also, we could use your help with reviews that help others take a look.  If you have the book, please go to the link and post a review on Amazon.com.

One caution: if you didn’t buy it on Amazon, they get huffy about posting your review, unless you include something specific like, “I bought this at a local bookstore,” “I received this as a gift,” etc.

Thanks in advance! Hoping to pump up to 30 reviews soon.

What day is it?

No, it’s not hump day, just Tuesday as I’m typing this.

For most folks Wednesday is the celebration of starting downhill toward the weekend.

But for caregivers this can work in reverse. Folks who take care of kids with special needs take our breaks on weekdays when schools and community programs are in session; the weekend provokes anxiety. And the closer it gets the higher the anxiety rises.

People with autism, like our son Joey, like structure and familiarity. Day programs in classrooms or work spaces provide precisely that. The weekend interrupts it. It is no surprise that Joey’s seizures, which are blessedly few and far between these days, tend to break through on the weekend at home. Melissa had to be in-home EMT on Saturday when Joey pitched out of a chair with an intense seizure.

And of course this was a long weekend, what with the Memorial Day holiday to further disorient and agitate both Joey and his caregivers (Melissa and me).

He did, at least, enjoy my grilled hot dogs and brats, of which he ate five. With buns.

Yeah, that hump day thing isn’t as happy for us as it is for most.

Note: I still don’t know why the video refused to embed in the post prior to this one. Well worth watching if you click on the embed code that’s spilled all over the page.

Mother’s Day on the Horizon

Here are a couple of good piece by MOMS of kids (little and grown) with autism:

At The Mighty, check out 15 Things I Hear as the Parent of an Autistic Child – And My Responses.

Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say…

donna reedAnd give a read to Shaunta Grimes’ Coffelicious blog, This is what it looks like to be a Gen-X mom with an Indigo Child who isn’t a child anymore.  (Strong language & content).

It’s so tempting to try to browbeat him into sleeping more. (I have no idea why it would work with a 23-year-old man when it didn’t work for a three-year-old baby.) I also find myself wanting to monitor his computer time, restrict him from drinking and unprotected sex, and refuse to let him get his own apartment because I can’t see how he’ll be able to manage paying his own bills.

It’s easy to forget that having autism doesn’t make him less of an adult with his own mind and the God-given right to make his own decisions. And mistakes.

Me?  I’ll try to get Joey to help me honor Melissa on Mother’s Day, all the while dealing with the reality that he expects any holiday to mean presents for him.

Isolation

The first book signing for Raising a Child With Autism is history, but this isn’t about the book.  It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet.  My prayer list keeps growing with their names and needs.

One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges.  They care for a son with autism.

We noticed that people stopped inviting us to stuff.  I think they’re afraid of our kid.  My wife is at home alone with him more and more.  She’s really feeling isolated.

All kinds of care givers suffer in similar situations.  People don’t invite you out or you find it too much of a hassle to go.  Competent babysitters or respite providers are hard to find.  The person in your care is agitated if you go out on your own, but resists going along when invited.

Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season.  It begins with people in isolation,

2012-12-22_09-13-56_966When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…

But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.

Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”

We weren’t able to attend an Easter service.  I had to work and Melissa had to – did you guess? – be home with Joe.  Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.

There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula.  But I suppose it begins like most efforts to end isolation, with a conversation,

And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

We are blessed this Easter.  Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.

We are grateful to all who read what we share, who leave messages and otherwise communicate with us.  You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.

May God’s peace be always with you.

Out with… with… I forget

So here comes the obligatory New Year’s post.  Although I think I neglected the compulsory Christmas post so I’ll cram them together.

Joey begins perseverating about Christmas presents – aka movies on VHS – in the summer.  We get mad and try to make him change the subject; Melissa makes him dictate a written list so at least some constructive interaction takes place; our eyes roll back in our heads…

presentsThen Christmas day comes, we wake him up for breakfast and presents, show him his loot ‘neath the tree, and he says…

“NO!!!!!”

and goes back to his room.

We eventually prevail upon him to open the gifts, which he does with grumpy histrionics before again retreating to his room without them.

Eventually, over several days, he begins watching his long desired movies and seems happy.

Well, this year we resolved (see that New Year’s hook?) to try a new approach, which was no approach at all.  We simply let him ignore the presents to see where his thought process would take him.  We offered them to him and then left them under the tree and waited.

Our older son and his wife flew in for the holiday, and we exchanged gifts with them a few nights after Christmas.  Joey seemed to get into the second gathering and opened his presents then.

Hypotheses include a) he wanted his brother there, although he did the whole “NO” schtick throughout the years his brother lived at home; b) he doesn’t want Christmas to come to a crashing end but wants to sustain the gift getting pleasure; c) oh, hell, I have no idea.

Here it is New Year’s Eve-day and I’m sitting here yelling at him to turn down the volume on the movies, which he’s enjoying.

I’m not big into resolutions.  But here’s a favorite scene that reminds me to be open to change, to quit pounding my head against autism or any other wall…

May 2017 bring you blessings, especially freedom from old ruts. May you have divine favor upon all that you offer.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come. (2 Corinthians 5:17 ESV)

Just when I thought I knew everything…

I got some pleasant surprises.

Last night we had a group of Dinka (South Sudanese) friends over for dinner.  We were a bit apprehensive, since Joey hadn’t met them before and unfamiliar groups can unsettle him.

Also, as we learned when he had a therapist from the UK, he finds accents amusing.  He starts laughing and mimicking them.  It cracked him up that the therapist, Mark, introduced himself as Mahk.  Joey couldn’t get enough of saying Mr. Mahk.  And laughing until he was short of breath.  So we wondered what he might do with African-accented English.

Anyway, Joey was fine with our friends last night.  He went on about his normal routines, didn’t stare or laugh, and wasn’t bothered in the least by the new people and voices.

Maybe he’s grown some more.  Or maybe there’s something calming about the Dinka – our dog didn’t even bark at these first time visitors, and she barks at long time friends and family.  She did, however, continue her cross-cultural dedication to mooching food and wanting her hindquarters scratched.

Another pleasant surprise showed up in a friend’s message on Facebook this morning.  chucky-cheese-adCheck this out…

That’s right, Chuck E. Friggin’ Cheese!  Sensory overload central, even for the neurotypical.  I mean, it turns parents autistic after five minutes of exposure, right?  This is amazing.  I can’t imagine how they pull it off, but good on them for caring in this way.

We are in the season for surprises and gifts, it seems.  May many wonderful blessings come your way.

The people who walked in darkness
have seen a great light;
those who dwelt in a land of deep darkness,
on them has light shone.  (Isaiah 9:2)

Party. Where you are.

This week features the Happy Holiday Progressive Blog Party at CareGiving.com.

The internet provides one way for tied up, tied down caregivers to “get out” and find fellowship, fun and support in the wider world.  The blog party will help you find a variety of caregivers in different situations who share their companionship and insight via the internet.

There are prizes to be won, including a copy of our book.

If you’ve not been here before, welcome!  We’ve been blogging since August 11, 2012.  Quite the memories scrolling back through the years.  Hope to add some with you, from right where you are!

Party!

Family caregiver? You can jump into this online party in the coming week. Great blogs to discover, new friends to make, prizes to win… all from the “comfort” (yeah right) of your care giving location! Great way to take a daily break, and hosted by a site with tons of resources:

A copy of our book will be one of the prizes!

Assume Everything

There was a spat in Christianity’s early years. Some understood Jesus to be a god-man like those of ancient myths, wearing flesh like a costume but really a divine tourist when all was said and done.

But the view that prevailed and remains is more mysterious. It says that Jesus is both the Holy God and fully human. He enters our humanity holding nothing back. The slogan of those who argued for this was “That which was not assumed is not redeemed,” that is, if Jesus didn’t share every aspect of our humanity (except for sin), then humanity cannot enter the kingdom of God with him. Christmas is about God assuming our human nature so that our human nature can be completed in eternal life with God.

In this beautiful 4 minute video, special needs children and their caregivers put on the familiar church Christmas pageant. With them, we can realize that special needs and caregivers’ fears and shortcomings are all part of what Jesus came to redeem. We all matter to God.