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WWDD?

April 29, 2013 By Leave a Comment

I’m 57, and I aspire to be more like my son Dan (18, autism).

Over the years, I have remarked frequently on how long it took hubby Jim and I to teach him step-by-baby-step how to tie shoes, brush teeth, shower independently, shave and do his own laundry, etc. But once he got it, he had it. Most often, we had to begin by telling him 4 months in advance of when we were going to start something. “Dan, in 4 months, on your 18th birthday, you are going to start shaving every day like a man. Daddy has to do it every day, and so will you.” “Dan, what are you going to every day starting on your 18th birthday?” “Dan, tomorrow’s your birthday, what are you going to start doing every day?” By then he had heard it so many times, he was resigned to it. And we never had to say another word about it except “you missed a spot.”

But I hadn’t realized how entrenched he was about this until recently when he got all 4 wisdom teeth extracted (general anesthesia of course), and he got up the next morning and shaved! Because that’s what you do. That’s what you’re supposed to do.

He is not plagued, like I am, by whether or not he feels like doing something. He does what he does because. Because you do what you’re supposed to do. I’ve decided this is something he could teach me – that being like him in this way could improve my life and my character. I’ve been asking myself, particularly when faced with the option of doing a chore I don’t feel like doing:

What Would Dan Do?

Now, right now, I’m not doing it, because it is 10:24 PM, and if I was doing what Dan does, I would have been in bed at 10  :-)   But a couple of nights ago when I was really tired and didn’t feel like taking 2 lousy minutes to brush my teeth before bed, I asked myself the WWDD question, and I brushed them anyway. Last night there were dishes in the sink and it was late. And I wondered: if it was Dan’s job to do the dishes before bed, would he let them sit there? No he wouldn’t. He would wash them, because that’s what you’re supposed to do. Tonight I was tempted to leave folded laundry on top of the dryer and take care of it tomorrow. Dan doesn’t do that with his laundry. He takes care of it right away. So now you are on to me that I am a closet slug!

But the point is, I’m thinking about him, and what he is like, and what I admire about him, and trying to be like him.

And that’s a good thing.

~ Danz mom, Peggy

 Contact: Peggy@chosenfamilies.org

Filed Under: Autism, Uncategorized

Redeemed

April 1, 2013 By Leave a Comment

Redeemed. Such a fitting word for this Easter season, and for our season of life with autism.

The spiritual illustrations of this word come to mind immediately with just a review of the dictionary.com definition:

  1. to buy or pay off; clear by payment: to redeem a mortgage.
  2. to buy back, as after a tax sale or a mortgage foreclosure.
  3. to recover (something pledged or mortgaged) by payment or other satisfaction: to redeem a pawned watch.
  4. to exchange (bonds, trading stamps, etc.) for money or goods.
  5. to convert (paper money) into specie.

We Redeemed Ones have been reflecting long and hard and personally at what it cost God to redeem us. May we reflect also on what He has paid for, what He deserves in return, what He is entitled to.

But how has my life with autism been “redeemed?” Life with an autistic son (now almost 19) has cost us, big time. Dreams died. Energy expended, dissolving into tears. Therapies invested in. Paradigm shifts. Friendships that didn’t get a chance to bloom because frequent military moves and transitioning a special-needs kid took all our time, and then the next set of orders would come in. But I would have to say the biggest price I’ve had to pay is being deprived of my child’s affection. I’ve never heard “I love you” from him. I’ve never experienced the running jump hug.  My son has tolerated me and never snuggled. That part of my life with autism hasn’t been redeemed yet.

But I can’t help but feel hopeful about launching him off to Beacon College in FL this fall. In a way, the therapies, schooling, love and prayers redeemed “the years the locust has eaten” and set Dan on this path. We never anticipated he would get a standard diploma for his high school graduation this June. We never even hoped he would go to a four-year college, much less with an honor scholarship.  And the very inconvenience (to say the least) of our nomadic military life turned into a vehicle to make college affordable for us: Dan can use his dad’s GI Bill benefits.

This I know:

God is faithful and merciful and gracious.

My son is full of surprises.

God requires me to be faithful in the meantime.

This life is not all there is.

 

~ Danz redeemed Mom, Peggy

Filed Under: Autism, Uncategorized Tagged With:

Not tested this time

February 4, 2013 By 2 Comments

I like to think I would have been faithful

if He had said “No.”

Would I still have said “God is good”

if Plan A crashed and burned at our feet?

Would I have sung “Worthy of Worship” this morning

with such emotion and praise if we’d had to punt

(on this Super Bowl Sunday)

and sort through all the other websites and links

and tell Dan, “Life doesn’t always turn out the way we want.

We have to start looking at other options”?

I’ll never know, because I wasn’t tested this time.

Dan got his acceptance letter from Beacon College yesterday!

“Oh, you’ve been tested plenty over the years,”

said a dear choir friend. “You deserve this.”

And I love her for saying so.

But me? I’m so grateful I’m NOT getting what I deserve.

By God’s grace, I wasn’t tested this time.

I have my acceptance letter from Him!

 

~ Danz proud Mom, Peggy

Filed Under: Autism, college, Uncategorized

“I did the best I could” – NOT

January 29, 2013 By Leave a Comment

As Christian special needs parents, we probably beat ourselves up more than most. We are painfully aware of our parenting failures, inappropriate reactions to our loved one’s behaviors, and yes, flat-out sin. But then there is the world around us, who oddly want to promote us to sainthood (right up there with Mother Teresa) and put us on a pedestal just because God decreed our journeys would include living with disability. Randy Newman, in “Applying the Gospel to Parenting,” has a profound word for us. Check it out.

http://www.randydavidnewman.com/2013/01/23/applying-the-gospel-to-parenting/

Peggy

Filed Under: Parenting, Uncategorized Tagged With:

The Waiting Game

January 19, 2013 By Leave a Comment

I’m savoring the not-knowing.

 

The waiting. The anticipation. I can identify with every parent of a neurotypical child who is waiting for that college acceptance letter.

 

We’ve been on a different journey our whole lives with Dan (18, HFA, not Aspergers) – the road less traveled -  and we always will be, I guess. But this particular waiting time – well, I feel connected. I like it!

 

The military veteran part of me wants to take charge, do something, call the college: what’s the status of my son’s application? I’m his legal guardian, you can tell me! But I’m holding myself back, because I am relishing this common experience. But when the waiting is over, if we have a positive response from the one college he wants to go to, I’ll join the sisterhood of Empty-Nester Moms Who Have a Kid in College. And he won’t be in Special Ed anymore, he’ll just be a college freshman. Wow.

 

That letter can take it’s sweet time, while I bask in this moment and thank God for it.

 

~ Danz Mom, Peggy

Filed Under: Autism, college, Parenting, Uncategorized Tagged With: , ,

My Graduating Senior

December 27, 2012 By 1 Comment

Some events, at least in our life with autism, get recorded here before they are 24 hours old. They are poignant, heart-stopping, amazing or disappointing, and I share my immediate reactions.

But some take time to process, even the good ones. I have been in tears, mixed with wonder and awe and humility, since December 7, and it’s time to share.

My autistic son Dan (HFA, not Asperger’s), who has been in special ed since he was 3 years old, SUCCESSFULLY PASSED his last state-mandated exam on his third try to earn a STANDARD diploma when he graduates from high school in June.

This is the kid who for years threw screaming tantrumming fits when he didn’t want to go somewhere, or for any other reason, like trying to get him to eat a different flavor yogurt than strawberry.

This is the kid who stared at the clock, obviously exhausted, waiting to go to sleep because it wasn’t bedtime yet.

This is my son, who recently wrote a letter to Regis Philbin asking him to be his mentor on his journey to become a gameshow host (nothing heard yet).

The same son we took to court for guardianship proceedings a couple of short months ago.

My son, who has had speech therapy, physical therapy, family therapy, ABA, RDI, one-on-one para support, and co-taught classes, sat down in front of a computer by his lonesome, answered the questions, and demonstrated the acquisition of knowledge required by the Commonwealth of Virginia to get the same diploma everyone else is getting at graduation.

WOW. I never would have thought. If we had known, would we have worked so hard? If we hadn’t worked so hard, would it have come to be? We literally did not know if he even had the ability to pull this off. We had hope, since he was only 2 points from passing the last time he took it. But, as I’ve said before, Reading Comprehension (inferencing, predictions) is one of the core deficits of autism. How much of this could actually be taught? We got our answer in spades, when he needed a score of 400 to pass, and got 442. Amazing.

Don’t give up the ship. Keep working hard. Bombard heaven with your prayers and those of everyone else you can enlist. You’ll be glad you gave it your last ounce of effort, no matter the outcome. As Dan quotes often from a favorite movie, “It could happen!”

 

Danz Mom ~ Peggy

Filed Under: Autism, Parenting, school, Uncategorized

Guilty of Regifting?

December 24, 2012 By Leave a Comment

Yes. We all are. And I don’t mean just repackaging one of the 5 candles you got from the office and giving it to someone else.

 

EVERY gift we give is a “regift” because everything we have, we got from God. When we put our offering in the plate, we are regifting. It’s like taking the money you got from Grandma on your birthday and buying a gift for someone else with it. Only Grandma, whether she knows it or not, is regifting to YOU resources she got from God.

 

I confess to being a little heavy-hearted this year with my Christmas giving. Who did we buy for last year? What did we get them? Is the kind thing to do NOT to give them a gift so no obligation or regret for not being able to reciprocate will be felt on the receiver’s part? How can we let them know they are dear to us without being too ostentatious about it? Is a $25 gift card enough or $50 too much? Are we the only ones in agony about this? (I love the relationship I have with my sister in the gift-giving department. Me: I want to get you something you will actually like/use. Give me a list of 3 things you want so I can pick one, and you won’t know which one I got you!)

 

Perhaps my gift-giving would have been more joyful if I had realized they are ALL just “regifts” after all. I’m redistributing, passing on if you will, resources entrusted to me by my Father in heaven. And what joy it gives Him to see me doing so. It’s my attitude that needs adjustment, not my process.

 

And then there’s the regifting of people back to God. If Dan (autism, age 18) is accepted to Beacon College in FL, we will be entrusting him to their care for the maturing of his mind and social relationships. But really, we will be relinquishing him back to God, who entrusted him to us for 18 short years, in ways I can’t imagine right now. Perhaps the most difficult regift of all.

 

2 Corinthians 9:7
Each one must do just as he has purposed in his heart, not  grudgingly or under compulsion, for God loves a cheerful giver.

 

I want God to love that about me.

 

~Danz mom, Peggy

Filed Under: Christmas, Holidays, Uncategorized Tagged With:

Not exactly a ‘Parenthood’ moment

November 30, 2012 By 1 Comment

I like ‘Parenthood.’ Young Max Braverman has Autism (Asperger’s), and has a recurring role on the show. He has a loving family, and I identify with their struggles to support, encourage, and stimulate Max’s emotional development.

The show this week starred Max in a big way, as the new student body president who vetoed the student council’s unanimous decision to sponsor a school dance. He was overruled, and his mom pleaded with him to make an appearance at the dance. Dad didn’t think this battle was worth the fight. But mom, undergoing chemotherapy for breast cancer, got teary-eyed about not wanting to miss any of Max’s milestones. So dad pleaded with Max and (spoiler alert!) he agreed to go for 30 minutes. I won’t even go into how she got him to dance with her.

So I was emboldened to tell my 18 year-old how much it would mean to me for him to come to the Christmas production at church this year, as I was chosen for a part as -wait for it -a medieval dancer :-) Especially since hubby will be out of town. And he could even sit with my nephew and his wife. And my BIRTHDAY would be the next day, and that’s the BEST gift he could give me! Nothing doing. And I was grieved.

But just as I was upset that his whole life is all about HIM and what he wants and doesn’t want, was I doing the same thing? Wasn’t I making this all about me and what I want? Yes and no. I want him to evolve, to open up his tight little circle just a little. I want my son to include me in his circle, his MOTHER. I want to FEEL like I’m important to him, just once.

I hear others trying to console me with, “That has nothing to do with autism, he’s just being a teenager!” But it’s more profound than that. It’s almost an inability to include others. But he was designed this way by the Master. For His purposes. For MY good. To expand my tight little circle.

~ Danz (dancing) mom, Peggy

Filed Under: Asperger, Autism, Parenting, Uncategorized Tagged With: , ,

Prayer and your Special Needs Child

November 12, 2012 By 2 Comments

I attended a CS Lewis Institute seminar on Effective Prayer this weekend, taught by Paul Miller, and was astounded that one of my most poingnant prayers should be answered by just one of his stories. This was not a special needs seminar, but Paul has a non-verbal autistic adult daughter and uses many illustrations from their life together to talk about prayer.

 

The story that most profoundly affected me was about his daughter Kim’s early morning stimming behaviors that, many years ago, were driving her parents crazy. While in the middle of writing a book about prayer, it occured to Paul that instead of yelling at Kim from downstairs to go back to bed (his admission), he should just go upstairs and pray for her. So he would get up, rest his hands on her, and pray. After a time, he started reading Scripture to her. HIS actions set HER off on a meaningful spiritual journey, which now includes resting her hands on people and telling them she is praying for them (on her iPad speech app).

 

I have been so focused on Dan’s life skills training over the years (18, HFA), that I have negected his eternal life skills training.  And now, I have less than a year to make up for it before he moves away to whatever post-high school residential program we can get him into.

 

We have always found churches over the years (due to frequent military moves) where we could attend “big church” services while he went to the children’s program or youth group. Why make him sit through a service that will mean nothing to him and keep us distracted with addressing his behaviors and wondering when the sermon was ever going to end? Looking back, I would probably do the same thing today. But, true to the law of unintended consquences, in one-on-one time with his youth pastor this week, Kris had to explain to Dan what baptism is! Duh, he has never seen one! I have been distressed over his apparent total lack of spiritual sensitivity, and underestimated the effect current culture has had over him. (I said something to him about Jesus’ second coming recently, which he characterized as “a myth.”)  Until now, I have laid Dan’s spiritual training at the feet of my church, prayed for God to work in his life, blamed autism for his inability to apprehend spiritual things, and was comforted by telling myself “I know God will do the right thing in regards to his eternal salvation.”

 

But Paul’s story gave me hope. I learned early on that nothing happens in Dan’s life until WE decide it’s going to happen. Showering independently, using a knife to cut his food, tying his shoelaces, laundry. Why would spiritual practices be any different? Well, if he will tolerate it (I’m praying about that), I’m going into Dan’s bedroom tomorrow at 6:20 am, rest my hands on him, pray for him and his day, and read a chapter of Proverbs aloud. I don’t think I can insert a “prayer coin” and a “Bible verse coin” into a heavenly vending machine, pull the lever, and expect Dan to fall on his knees and beg to be baptized. But God might show up and do something. And He might use even me to make it happen in my son’s life.

 

~ Danz mom, Peggy

PS: I highly recommend Paul’s book, A Praying Life. It’s FILLED with stories about Kim.

 

 

Filed Under: Autism, Parenting, Prayer, Uncategorized

Educator extraordinaire

October 27, 2012 By Leave a Comment

I’m not talking about one of my son’s teachers (Dan, 18, high school senior, autism), although it could apply to any one of them. I’m talking about Lydia, an autistic college student I met on Wednesday, who taught ME something.

Lydia is amazing. She is a sophomore at Georgetown University, a double-major in Arabic and Psychology, and interning at a DC autism advocacy organization. When introduced to Jim and me as a “person with autism,” Lydia immediately corrected her with “an autistic person, please.” When we asked her about the distinction, she was off and running, talking a mile a minute.

Apparently there are 2 theories of self-identification in the autism community: person-first and identity-first language. You can read her whole article about it here if you are interested. I think her main idea is succinctly stated in this passage:

When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

I liked when she told us “the only crime you can commit is to correct how an autistic person self-identifies. I’ve had people correct ME when I refer to myself as an autistic person!”

So I asked, “Given how you feel about the language distinction, how do you feel about autism being classified as a disability?” “Oh,” she said, “disability doesn’t occur in nature, creatures are what they are. Disability is a social construct, a term we use to describe people outside the bell curve, and autistics are outside the bell curve, so it’s fine with me.” Wow.

You go, girl!

~ Danz mom, Peggy

Filed Under: Autism Tagged With:
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