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In This World of Autism

April 25, 2012 By Peggy Leave a Comment

I have made a valiant effort to discover this author (and failed), so if anyone out there knows, please comment! It’s too good not to share.

In this World of Autism

If you’ve ever wanted to stay in your own bubble,
Kept apart from the world because it’s too much trouble,
that’s like autism.

If you’ve ever been comforted by a rocking chair,
If you’ve been so frustrated you want to tear out your hair,
When someone spoke and you just didn’t care,
That’s like autism.

If you’ve ever been nervous in a new place,
If you’ve ever had trouble reading someone’s face,
That’s like autism.

If you’ve ever been perturbed by a change in your day,
If you’ve ever not known what to say,
When someone wants to go and you want to stay,
That’s like autism.

If you’ve ever shivered at an inadvertent touch,
If you’ve ever thought the noise of fireworks was way too much,
That’s like autism.

If you’ve ever talked nonstop about what excites you,
If you’ve ever heard a joke, but not had a clue,
When someone made a sarcastic comment and you think it’s true,
That’s like autism.

If you’ve ever put things neatly in a row,
If you’ve ever taken apart objects to see what makes them go,
That’s like autism.

If you’ve ever broken a social rule,
If you’ve ever had a hard time figuring out what’s “cool”,
When you never thought to use a book as a tool,
That’s like autism.

If you’ve ever avoided looking someone in the eye
If you’ve ever daydreamed while the world goes by,
That’s like autism.

If you’ve ever quoted a movie line,
If you’ve ever lost track of time,
When you eat your favorite meal for the 500th time,
That’s like autism.

Autism isn’t so different from you and me,
Autism is full of possibilities,
It’s up to us to let them be free,
In this world of autism.

 

~ Danz Mom, Peggy

Filed Under: Autism Tagged With:

Myths and Truths About Autism

April 21, 2012 By Peggy Leave a Comment

Reprinted with the express permission of Dr. Tippy.

In honor of Autism Awareness Month, a guest post follows by Dr. Gil Tippy, clinical director of the Rebecca School in New York City for children on the autism spectrum ages 4 to 21. He is coauthor, with Dr. Stanley I. Greenspan, of Respecting Autism, a book about 16 students and the tactics that have best helped them.

 

The myth: Autism is a disorder of memory.
The truth: Autism Spectrum Disorders (ASD) are disorders of relating and communicating, not disorders of memory.  This may seem obvious, given that the general public has seen great memories in action—in the movie Rain Man, for instance—but the people supplying the bulk of the interventions in autism seem to have forgotten it.  In general, kids on the autism spectrum have very good memories.  In fact, their parents generally report that their kids remember the littlest, seemingly insignificant details of everything.  Kids see the trees very clearly, but cannot see the forest; they have trouble being big picture thinkers.  That is why interventions that work on cramming kids’ memories with endless facts, drilling on meaningless detail, are ineffective and harmful.  What kids on the spectrum need are interventions that focus on the core deficits of autism: relating and communicating.

The myth: Kids with ASDs are not interested in communicating.
The truth: Kids with ASDs very much want to communicate and get their needs met, but have not yet seen that the way we generally communicate, with it’s subtle social rules, is something they can do.  Kids communicate constantly, and they need clinicians and teachers who can appreciate their communications.  Interventions should never be aimed at “extinguishing behaviors” by punishment or ignoring, as those behaviors are the communications of the kids.  For example, one student I know was on a program where the goal was to extinguish “inappropriate smiling!”  I guess the theory was that the smiling seemed to be out of context, and so was inappropriate.  I wanted to treat the smiling as a communication, and worked hard to understand what the student was trying to tell us and then respond appropriately to what the he was trying to say.  Teachers and parents need to be shown how to understand what is underlying a behavior, and to use the child’s natural desire to communicate as an ally in the attempt to invite kids into our world.  “Extinguishing behaviors” is really just stifling a child’s voice.

The myth: Kid’s with ASDs must be taught differently, by giving them a reward to get them what we want them to do.
The truth: Virtually every kid that I encounter at the Rebecca School comes after burning out on being taught some repetitive skills or facts, over and over, in order to earn some food reward or brief break-time reward.  The kids soon figure out how to get the reward, but the tasks are tedious and boring to them, and like the intelligent kids they are, they begin to rebel.  The parents tell me their kids dread the work, and that they, the parents came to dread making the kids do it.  One parent described the clinicians who did this work with their kid as “the Vampires who come to our house!”  Usually, by the time I meet them, the parents and kids are looking for a better way, and are glad to have a more respectful, developmental approach used.

Kids are kids, and they want to be in the world with their loving families and caregivers.  Kids with spectrum disorders can and will learn when you respectfully try to understand what they are saying, follow their lead in the sense that you use their interests to hook them into interactions that you can use to expand their capabilities, and respect the idea that they have ideas and thoughts just as valid and important as ours.  The notion that they have to be drilled to complete some set of things that we impose on them, to some level of accuracy, is bad education.  Typical kids and adults don’t learn effectively this way—just look at the teaching-to-the-test failures of No Child Left Behind. Kids with spectrum disorders do not learn this way either.  Love, respect, sparking a child’s interest, these are the keys to learning, not reward and punishment.

The myth: Kids with ASDs tend to be intellectually disabled.
The truth: In my experience with kids across the autism spectrum, kids with spectrum disorders have intelligence at least equal to the people working with them, often higher!  The myth that kids with spectrum disorders are intellectually disabled is very entrenched.  I recently was forced to sit through a presentation at an important early childhood education conference, where a nationally famous doctor told the audience that kids on the spectrum are usually intellectually disabled as well!  This myth comes from the limited world of testing, where all of the tests generally done assume that kids are at the developmental level where they can think abstractly.  Neuro-typical kids generally get there before their fourth birthday, but kids with spectrum disorders most likely are not yet thinking abstractly, and so do not perform on these tests.  As a result, their test results make them look like they have intellectual disabilities, when in fact, they have developmental disorders that make the tests inappropriate!  Test them in their areas of interest, outside of their developmental challenges, and you find intensely focused, bright kids with fabulous memories.  The failure of the tests is rarely mentioned or understood.

If you treat kids with ASDs with respect, kindness, attention to their valiant attempts at communication and love, you watch them grow and develop just like all kids will.  When you ignore their basic humanities and rights you do them a disservice, and no teacher, parent or caregiver ever has the right to do that, even in the name of “evidence-based treatment.”  Treat kids the way you would like to be treated, the way you would like your children to be treated, and you can avoid mistakes built on these four common myths about autism spectrum disorders.

 

 

 

Filed Under: Autism Tagged With:

Is it a “long,” “tough,” or “hard” row to hoe?

April 11, 2012 By Peggy Leave a Comment

Any way you slice it, it’s “a difficult task that takes a long time.” The difficult task? “Rejoice with those who rejoice” (Romans 12:15), in my case, rejoicing with parents who are talking excitedly about their children’s post-high school plans. Yesterday, while getting my locks colored to deep auburn, my Vietnamese-immigrant hair stylist said her 14 year-old daughter had gotten a full-ride, 4-year scholarship to George Mason University. At 14! This amazing story followed immediately on the heels of OUR 2 college visits in FL over Spring Break for our 17 year-old with autism who is a year behind his peers (which is right where he needs to be), did not interview well, and may not even graduate with a standard diploma next year.

 

It’s been awhile since I’ve been through this developmental-differential angst. In fact, I’ve been keeping it relatively together since Dan’s toddlerhood and embarrassment over delayed potty training. He’s our only child, so no sibling comparisons emerged. We just sucked it up and moved on and did the therapies and strategies and accommodations. And now we are praying for guidance for just the right placement after high school.  But every once in awhile, this private undercurrent of pain surfaces, even though some would gladly trade their pain for mine; even though Dan has “a future and a hope;” even though “my God will supply all [my] need in Christ Jesus.”

 

So, Lord, give me joy on the journey, confidence in the conundrum, strength in the search, perseverance in prayer. Help me to really, fully, down to my core, rejoice with those who rejoice – unclouded by self-absorption and self-pity. (In otherwords, sin.)  June of 2013 will be here before we know it. Amen.

 

~ Danz Mom, Peggy

 

Filed Under: Autism, Confession, Expectations, Parenting, school Tagged With: , , , ,

Out of the mouths of babes

March 26, 2012 By Peggy 1 Comment

17 year-olds with autism are “babes” in many ways, and these 2 conversations with my babe delighted me this week.

LAUNDRY BATTLE WON
Dan: When are we leaving for Spring Break?
Me: Saturday.
Dan: What time?
Me: Early, 6 AM.
Dan: That means I will have to do my laundry on Friday then.
Me: YES!

This next conversation is all the more remarkable since Dan does not have Asperger’s. I immediately ran to get paper and pen to write down this exchange.

Dan: Parsley is our alpha cat, and Sage is the omega cat (smiling at his own witicism).
Me: Do you even know what “alpha” and “omega” mean?
Dan: They’re the first and last letters of the Greek alphabet.
Me: That’s right! I didn’t know you knew that! You must be learning something from all the Jeopardy! you watch.
Dan: It was the first clue of the second season of the 1992-93 year.
Me: REALLY? How much was the clue worth?
Dan: Back then it was only $100. In the Bible category.

WOW.

~Danz proud mom, Peggy

Filed Under: Autism Tagged With:

My Water-Out-of-Rock God

March 18, 2012 By Peggy 2 Comments

I’ve been meditating all week on the OT story in Numbers 20, the SECOND time God brought water from a rock for the children of Israel. (The first time was in Exodus 17.) I’m stuck here, because I just can’t get over it.

The people were being led by God (NOT wandering aimlessly) through the wilderness of Zin, and “there was no water for the congregation.” This is not a small problem. I’m sure I would have been among the loudest complainers. And I still default to that response when I’m dealing with the effects of autism in my home. Maybe not outloud – I’m not known as a whiner – but in the sense of “I can’t do this. This is too hard. I can’t fix this problem. Will I be dealing with this for the rest of my life?” Me, me, me.

No water was a real problem, they didn’t make it up. But they “quarreled” about it with their human leaders who couldn’t do anything about it either. Except go to God on their faces, which is the only right thing they did. Moses and Aaron were given instruction on what to do about it, but then they didn’t do what God told them.

But guess what, God provided anyway. I don’t know about you, but “able to produce a vast quantity of water” is not the first characteristic I think of when I hear the word “rock.”

Who could make up a God who would bring enough water out of a rock to nourish maybe a million people and their livestock in the face of massive quarrelling, resentment, complaining and flagrant disobedience? God provided anyway! This is very comforting to me.

I always used to think it was Moses’ disobedience that was his death sentence – he struck the rock instead of speaking to it – but even more frightening is the reason God gave.

“Because you did not believe in Me, to uphold Me as holy in the eyes of the people of Israel, therefore you shall not bring this assembly into the land that I have given them.”

But I find comfort even here. Moses didn’t get to go to the promised land, he went someplace far better.

 

~ Danz Mom, Peggy

 

 

 

Filed Under: Bible, Journey, Parenting, Provision Tagged With: ,

Autism: And oh by the way, I have a life

March 7, 2012 By Peggy 2 Comments

Even though my small family (hubby, son, me) has been on the autism road for almost 18 years, I do have a life. I think it’s important to realize and educate others that while disability focuses our attention, laser-like, it doesn’t consume us. Like this week, for example, other life-issues floated to the surface.

 

My beloved Mom finally transitioned out of rehab from her NOV spinal surgery to an assisted living facility of her choice. For most of her life she has lived married, and then with friends, and most recently with my brother. But she realizes she needs a level of care he and his wife can no longer provide for her, so she goes gladly, looking forward to the Bible studies (that would be first on her list), regular meals with vegan options that she doesn’t have to cook or shop for, onsite care and scheduled social activities to her heart’s content. At 79, she expressed anticipation of what ministry her Lord may have in store for her there. She said she sat down to the piano to play some old hymns, “and I really blessed somebody!” May I be as gracious as she when life requires this of me.

 

And autism, while life-altering, is not a life-and-death issue. But waving goodbye to my sister’s husband when he shipped out to Afghanistan from Baltimore on Thursday, is. OK, so he’s not going to Kabul, but he will be joining my sister’s son in Kandahar, doubling the weight on my heart, and doubling my prayers.  Rico volunteered so someone with young children at home wouldn’t have to go, so he was in good spirits. Elaine is proud, trusting God, and doing fine (she live in RI). It will be great for Rico to have an experienced loved one meet him upon arrival to show him the ropes. He’ll have to polish up his salute though:
Tristan is an (Army) officer and Rico is (Navy) enlisted.

:-)   Tristan is scheduled to return home late May, and Rico could be coming back as early as October

 

And grief for my beloved “Barney” (short for Barnabas, my ”encourager”), whose husband went to be with the Lord unexpectedly last month, is enveloped in anticipation of having a private dinner with her this week, our first alone-time since his passing.

 

So it’s been an emotional week. I’m giving myself some slack. And you know what? Dan’s delayed self has matured as he’s aged chronologically, so autism hasn’t been an additional burden this week, just ever-present on the back burner. Thank God.

 

~ Danz Mom, Peggy

Filed Under: Autism, Parenting Tagged With: ,

The verse that gives my days significance

February 22, 2012 By Peggy 1 Comment

2 Peter 3:8 New International Version (NIV)

8 But do not forget this one thing, dear friends:

With the Lord a day is like a thousand years,

and a thousand years are like a day.

 

I’ve heard the second half of this verse referenced many times (most recently at a funeral), but hardly ever the first half.

 

What does it mean  that “a day is like a thousand years?”

 

To me, it means my minutes are of WAY MORE significance than I imagined. Do the math.

If 24 hours = 1000 years, then

12 hours = 500 years

6 hours = 250 years

1 hour = 42 years

30 minutes = 21 years

15 minutes = 10.5 years

5 minutes = 3.5 years

1 minute = 8.4 months (34 weeks)

1 second = 4 days.

Doesn’t this formula impart so much more significance to the way I spend my time, for better or for worse? That hour I spend watching my favorite TV show, which has developed a plotline between 2 really nice unmarried characters who are so in love, they are trying to have a baby together – “a really BIG decision” - with the word “marriage” not even spoken between them?” Yes, it’s only one plotline in a show I love (with a special needs family!), but how many minutes are spent on it, and how many years of watching does it equal in God’s book?

 

What about the 30 minutes I spend being mad at my husband? The nanoseconds of critical thoughts about others throughout the day?  That unkind word? The accumulated hours of self-absorbedness, self-indulgence and plotting to get my own way? This verse makes me weep with terror over my badness, and plead for my Savior’s mercy.

 

But, thanks be to God, it works the other way too. This verse protects me from beating myself up when I “only have 5 minutes” to connect with my Mom on the phone, read my Bible, or pray. It pleases God when I spend “21 years” playing Wheel of Fortune with Daniel (17, autism), “10.5 years” of thanking Him for His mercy and goodness to me, the multitude of quick “arrow-prayers” of intercession for my beloved “Barney” whose husband died this week, “84 years” mentoring my CS Lewis Institute Fellow.

 

My minutes matter.

Psalm 90:12 New International Version (NIV)

12 Teach us to number our days,
that we may gain a heart of wisdom.
Danz Mom ~ Peggy

Filed Under: Autism, Bible, Confession, Journey, Parenting Tagged With: , , ,

Team Player

February 5, 2012 By Peggy 3 Comments

It will take a couple of blogposts to go into what a ground-breaking week this has been for Daniel (17, HFAutism), so I’ll start with the most timely one, Super Bowl Sunday.

 

Problem on the homefront: Daniel is a Giants fan, and his dad a life-long Patriots fan. Before I knew the Giants was the team to beat, I ordered a Patriots flag, which much to Daniel’s dismay, is flying proudly from our flagpole. I have a feeling these two will have to watch The Game in 2 different rooms of the house.

 

Problem on the workfront: Daniel’s boss at Papa John’s Pizza wants him to work. Franchise-owner Rob has been fantastic with Daniel, supervising him for over a year now, and overseeing his promotion from neighborhood flier distribution to the pizza line.  Rob put him on the schedule to work during the Super Bowl, the busiest pizza day of the year.

 

Rob was not there when Daniel worked on Thursday, and Daniel was UPSET at seeing his name on the schedule for Sunday. “MOM, they have me on the schedule to work during the Superbowl! Don’t they understand my team is playing? I can’t work that day! Besides, I DON’T WORK WEEKENDS!”  “Well, son, you have to understand your boss is a businessman, and that’s the busiest day of the YEAR for pizza.” “HE has to understand why I can’t work! You have to talk to him!” We went back and forth like this for awhile, me trying desperately not to escalate emotionally to his level, but making no headway reasoning with him at all. Finally I said he had to grow up and tell his boss himself, and Dad suggested maybe he should wear his Giants jersey to make the point he was no lightweight fan. I told hubby, “I don’t know what to do. He has a DISABILITY, and he is emotionally invested in watching this game. I don’t know what’s going to happen.”

 

So on Friday I get a text from Rob: “Dan said last night he wasn’t coming here on Sunday. It’s our busiest day of the year and I could really use his help. I can get him out by halftime. Could you talk to him for me please? Thanks.” Just great. Been there, done that, to no avail. I REALLY DON’T WANT TO BE IN THE MIDDLE OF THIS, PEOPLE! So I called Rob and told him about Thursday’s conversation and that I was bringing Daniel to the store to talk to him, but I didn’t know how it would go. I told Rob Daniel was adamant about not working, reminded him that Daniel has a disability, encouraged him to be very firm and directive as in “Dan, I need you to work and I want you here at 4:30.” I said “If he refuses your compromise to work half the game, tell him ‘That’s your choice, but I’m very disappointed’ [because] that word is very effective with him.” I told Rob I would not be coming in with Daniel, because Dan would look to me to plead his case for him.

 

So, we went to Papa John’s, and Daniel got out of the car with a “here we go” and his Giants jersey. 5 minutes later, he got back in and said mildly, “He wants me to work Sunday.” “Well, what are you going to do?” “He wants me to work Sunday.” (Honestly, getting info from this kid is like pulling teeth!) “What time does he want you to be here?” “4:30.” Do you want us to record the first half of the game so you can watch it, or just watch the second half live when you come home?” “Don’t bother recording it.” “You just want to watch the second half live?” “Yes.” HOORAY! THAT MEANTS HE’S AGREEING TO WORK! WOW! And he doesn’t even have an attitude about it!

 

So when I had a moment alone, I called Rob back. “What did you SAY?” And since I can’t quote him directly, I will paraphrase that Rob told him it was their busiest day, they were even going to fire up the 3rd oven they never use, he needed Daniel to do the chicken wings and pepperoni pizzas, EVERYONE was coming in to work. And the coup d’grace? “I know the Giants are your team, but Papa John’s is your team too, and your team needs you.” Again, WOW. Brilliant.

 

And today, Daniel to his dad, “Since Papa John’s is going to be so busy tomorrow, maybe I should go in at 4 instead of 4:30.”

 

 

Hallelujah! Is this the day my boy’s DNA starts morphing him into manhood?

 

 

~Danz Mom, Peggy

 

 

Filed Under: Autism, Parenting, work Tagged With: , ,

“The Wheels on the Bus…”

January 15, 2012 By Peggy 1 Comment

Poor photo quality, but it tells the The Story of Our Life Right Now. Only one empty frame. One year left. And if I’m not careful, and don’t beat them back with a stick, regrets start washing over me.

 

“What if” I hadn’t taken matters into my own hands and denied Dan (17, autism) a sibling by getting my tubes tied when he was born? Sure, I’m not big enough to foil God’s plans for me, and I had good reasons at the time (age 38, 3 miscarriages before his pregnancy), but shouldn’t I have let go those reins?

 

And with all the therapies over the years, and months to teach him how to shower independently, and weeks to transition him from eating some other flavor yogurt than strawberry, and day-to-day hand-over-hand how to tie shoelaces and manipulate a zipper, did I neglect his eternal soul?

 

And then there’s his post-high school future. Will he graduate with a standard or modified diploma? How much of our financial resources can we responsibly commit to him? How many programs do we investigate? How much say do we allow him in the final decision?

 

Well, thanks to (you know who you are), reading “One Thousand Gifts” has changed my life. I’m determined to live a palms-up, open-handed life instead of a “No, God” close-fisted life. “Fear is practical atheism” is not going to define me.  God is opening my eyes to the myriad gifts He pours out on me every day, because He is ALL good and because He loves me - Peggy Monahan. Gratitude gives birth to joy, and joy births love, and love casts out fear.

 

So here we go, 3 semesters from graduation, counting my gifts (not regrets) along the way, learning to trust. My Father, bless us, every one.

 

 

Filed Under: Autism, Change, Expectations, Journey, Parenting Tagged With: , , , ,

In Praise of a Principal

December 15, 2011 By Peggy Leave a Comment

“Peggy, I hate to disrupt your evening, but could you give me a call? Thanks. Sent from my iPhone.”

 

Oh, great. I received this message from Daniel’s principal, my boss, at 7:30 PM, but Jim and I were at a fundraising dinner and it was now 10:45 PM. What to do? Well, if I called and he answered, it wasn’t too late to call back, right? And if he didn’t answer, I would at least get credit for returning the call. I’d see him the next morning anyway. I left a message, and he called me back. This was not a good sign. Did I commit some heinous faux pas in my new position as the Attendance Secretary that couldn’t wait until tomorrow to address?

 

No. It was about our son (17, autism) and an incident on the afternoon bus. Fortunately I knew what our principal was talking about, because Daniel’s para had already briefed me. Seems Daniel got quite upset with her during his off-campus Television Production class because she was, gasp, insisting that he do some of the project work himself. He quite often plays the helpless card, and she called him on it: “Who’s the student here? You! Who’s doing all the work? Me!” And he got very angry. He’s big, and she’s not, to put it mildly. But she would not be bullied (I love you, C!), and by the time they got on the bus to come back to school, he was in full contrition mode, but expressing it inappropriately, to say the least.

 

Daniel said loudly and clearly on the bus, “I AM SO MAD AT MYSELF, I SHOULD JUST KILL MYSELF!” C. calmed him down, but the bus driver rightly reported this to the Transportation Supervisor, who reported it to our principal. Who called me.

 

This was actually very comforting.  The adults in my son’s life were taking any suicide verbiage very seriously. The chain of command was followed. And our principal (Daniel’s and mine) was compassionate and concerned with me on the phone. (It helps in every way that he has a special ed background.) He did not express shock and horror that my son would say such a thing on a bus full of kids. He did not emphasize my responsibility to get control of my son (as if I could) to make sure that never happened again.

 

We are fortunate that Daniel does not have a depressive personality, and that outbursts like this are completely out of character. I can’t imagine a greater pain than desperately loving and parenting a child haunted by the darkness of depression. But if we have such a child at our school, and they cry out, they will be heard and engaged.  We did have a very serious conversation with Daniel about what not to say when you’re mad at yourself, and that he owed C. and the bus driver an apology, and that no, he wasn’t in trouble with the princpal. We ended the conversation with the principal’s closing words:

 

“Tell Daniel we love him and care about him.”

 

Danz Mom ~ Peggy

Filed Under: Autism, Parenting, school Tagged With: , ,
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