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stevej - Autism and Special Needs

City: Harpswell
State: Maine
Country: USA
Member since: Jan 11, 2007
Last logged in: Dec 01, 2008

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Father, Assistive Technology, Physical Therapy, Anxiety, PDD, Anxiety, Bi-Polar, SCERTS, Running

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Father, Assistive Technology, Physical Therapy, Anxiety, PDD, Anxiety, Bi-Polar, SCERTS, Running

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stevej's Page URL

http://www.foggyrock.com/MyPage/wynnsdad

stevej's Page URL

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stevej's Bio

I'm a husband to my spirited wife Shannon, father of two children, my inspirational son Wynn and great daughter Haley. Wynn is now 13 with autism. He has been the driver for my wife and I to push for better ways to track behaviors, journal his days and find what other things can help him. www.iabida.com is very helpful in the day-to-day team management for my son - and www.foggyrock.com is my community.

My son has been a fighter through all of this, which can make it difficult at times, but also helps me hope his fierce desire will protect him. My daughter is 12 and has been a tremendous help for her brother and his biggest cheerleader. Foggyrock is hopefully a big help for everyone to network better, make new friends, find new information and improve our collective understanding.

Welcome and thanks!

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stevej's Compositions

Some humor for the day

by stevej on 11.30.08 - public

Travel has become tough - even if we aren't travelling with anyone with special needs. Thought you would find this funny - the "no frill airline sect...

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Thanksgiving Autism Style

by stevej on 11.28.08 - public

Staff in 7:30 am
Off for a thanksgiving run
Back by 11 am
Son eats thanksgiving meal first
Drop off of food and daughter at friends at 12:30
Back...

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Cafe thoughts

by stevej on 10.27.08 - public

Rainy day.. random thoughts... cafe tea...

College town, college kids, professors sipping... me watching. Respite is covering - a Sunday date. Te...

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Future Thoughts

by stevej on 09.13.08 - public

Delayed planes, cross country travel and stuck at 2:46 am on a Saturday. Sound familiar for those of you who travel for work? Is it a time for frustr...

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Delayed planes, cross country travel and stuck at 2:46 am on a Saturday. Sound familiar for those of you who travel for work?  Is it a time for frustration, or a time/opportunity for reflection?

I mulled this and decided this woudl be a good opportunity for reflection about what we can offer my son for a future?  What can you offer your child for the future?  Does it look realistic that your son or daughter will be able to live on their own?  My son can't I know.

We're on the verge of not being able to control him at home.  What then?  What does your state offer?  Maine's philsophy is one of curing or helping the individual.  If it doesn't work, try another place... and another.  All with the noble goal of getting the individual back home.  But what if they can't make it at home after awhile?  What if a group home isn't workable?

My dream is to have a beautiful place - a campus setting on a lot of land.  A place they could feel safe and comfortable in.  Does your state have something like this?  I'd love to know.  Hopefully we won't need this for some time, but when we do, it would sure be great to have it....

Maine has a

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Contentment

by stevej on 06.12.08 - public

I must confess contentment isn't my natural asset. One of my favorite quotes is "if there is a way to do it better, find it". That philosophy doesn'...

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I must confess contentment isn't my natural asset.  One of my favorite quotes is "if there is a way to do it better, find it".  That philosophy doesn't blend well with ... just accepting.

Having autism in the family does a number of things:   The yard has weeds, the garden gets mowed, those nicely painted walls?  forget it, moving for work or just for a different house.. not likely.  Recently though, something happened.

It was mid-morning on Sunday and I sat down in a chair in my bedroom.  Tired, somewhat annoyed that I couldn't mark off some projects that really needed to be done.  Sitting there in not the best mood, I then looked outside and noticed the flowers, a beautiful blue sky, the nice lines of a recently done shingle job, swept sidewalk, front yard mowed, my daughter playing the piano downstairs and silence from my son.  SILENCE?  From my son?  While the piano was being played?  That is highly unusual.  Usually at the sound of the first bars there is quite the commotion and yelling for the piano to quit.

But on this Sunday, for whatever reason, quiet acceptance.  I sat listening to the piano, quiet from my son, birds and looked out at sunshine, blue sky, swept walk and also for the moment was content.

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Sweet Dreams

by stevej on 03.27.08 - public

At home from the hospital now, a new ritual. Anxiety has increased for Wynn. And why shouldn’t it? If I’d been taken from home in an ambulance at a...

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At home from the hospital now, a new ritual.  Anxiety has increased for Wynn.  And why shouldn’t it?  If I’d been taken from home in an ambulance at age 11, strapped to a board in the back, driven 3 hours to Providence, admitted to a strange hospital at 1 am, lived there 3 months alongside severe kids with propensity for head smashing, transferred to another hospital in Portland, lived THERE for a year with constant staff changes… I’d be anxious too.

Now he’s home and the anxiety starts early in the day when he wakes up.  “will I live here forever?”  
“Yes you will. “
“ I hated the hospital.  Why was I there?  I don’t want to leave!  You left me!  Am I home forever?”  
“Yes you are.” 
“Is this my home?”  
Yes it is your home”…. and on the conversation goes.

So at night, he has a new routine.  Say goodbye to the kitchen, the living room and walk to the stairs.  Turn around and walk back and forth a couple times on tip toes.  If someone says something that interrupts the process, he must go back and start again and again.   Then up the stairs all the while asking “can I eat food ever again?  Why do I have to go to bed (proper answer – you don’t have to go to bed.  Control must be in his hands) In the room, arrange the bed.  Make sure the sheets are on tight and his favorite blue blanket is on.  If not, back downstairs, but now in a very agitated mood.  Where’s my blue blanket, I WANT MY BLUE BLANKET, MOM!  Back to the kitchen, good-bye kitchen…

And after he’s finally in bed, sweet dreams?  To which you must respond sweet dreams.  Good night?  The answer again is good night.  If you forget and say good night Wynn, that isn’t good.  He may come out of the room and if he does you risk needing to run through the cycle again.  With much practice, we simply respond exactly as we know he wants.  Not too much volume, not too quiet.   The fan for the fireplace stove in the basement must be lowered as well to hear, as this will go on for some time.  Sweet dreams?  Sweet dreams.  Good night?  Good night.  Am I here forever?  You are here forever.  Am I a cartoon?  No, you are real.  Sweet dreams?  Sweet dreams.  Good night?  Good night?  GOOD NIGHT?  Oh uh, good night. Why didn’t you answer?  Sorry… didn’t hear you.  Good night Wynn.  Sweet dreams?  Sweet dreams… we’ve counted over 40 sweet dreams on some nights – all that must be answered in a timely fashion.  We’ve tried not answering, saying this is the last time (with the resulting jumping out of bed).

Last night, it started after he woke up from bedwetting, his other new post hospital habit.   It is 1:10 and he’s just been changed with new sheets on the bed.  Sweet dreams… and oh how does the fear start.  Are we up all night sing-songing sweet dreams, good night until the morning?  And just as I begin to really worry, I hear a soft voice call out after the last good night.  “I love you dad and all is well.”

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Bed Wetting

by stevej on 03.21.08 - public

"I'm wet" calls my son.... two times a night most nights. Oh, we've worked on some strategies. Pull-ups.. response? "I'm not a baby. Only babies w...

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"I'm wet" calls my son.... two times a night most nights.  Oh, we've worked on some strategies.  Pull-ups.. response?  "I'm not a baby.  Only babies wear diapers" says my son and flings them with great indignity into the corner of the room.  He's right.  But he still wets.

We've tried the middle of the night, trick you into sleep walking into the bathroom.  "why are we up in the middle of the night?  I should be in bed!" and then my son resolutely reclines peacefully back on the bed with nary any liquid loss, or sleep for that matter...until "I'm wet" he calls out.

Another attempt has been the "get out of needing to shower if you are dry" option.  He doesn't like showers, but that  isn't remotely successful as I don't think he connects the two.

We've also tried the no liquid routine past  6 pm.  Right.  That works really good with  5 faucets in the house, a creek out back, ice cubes he loves and snow in the winter that is great eating.

What about bribery you ask?  Good question.  Food causes problems.  Like needing to brush teeth again.. not exactly a trivial process.  Scrap that.  Gum?  Scrap.  Toys?  That has worked.  Unfortunate side effect is wanting to stay up to play with them.  Scrap.  Something that really might work is some juice.... and  an absorbant cloth underneath a rubber mattress.   That, and a sweet wife who somehow cheerfully gets up to change the sheets multiple times a night when we hear the dreaded.. "I'm wet mom"

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A time to remember....

by stevej on 03.02.08 - public

We walked hand in hand. Calm. Sand squishing between our toes. The sound of water gurgling softly nearby. Scattered beach goers to my left, calm w...

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Who Inspires You?

by stevej on 02.28.08 - public

Inspiration for me comes from individuals going far beyond what is required. Moms and dads who
help their child speak, walk, learn. Professionals p...

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My neighbors death and autism

by stevej on 02.17.08 - public

Recently I heard that my neighbor had passed away. 3 months ago. And I just heard about it. It isn't like we live in a major metropolis. Harpswell...

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Nightime musings in the land of the distant sleep....

by stevej on 01.22.08 - public

My mind is wandering tonight as we've spent the past 3 hours past bedtime (and still counting) with intermittent aggression, crying, talking and gene...

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My mind is wandering tonight as we've spent the past 3  hours past bedtime (and still counting) with intermittent aggression, crying, talking and general disregard for parental rights by my son.  (ie. a few minutes downtime before we need to sleep...)

He's had a somewhat rough couple of days and the discussions my wife and I have seem to be similar to:  "Do you think the frozen fruit juice we gave yesterday as the bribe for medicines caused gut problems today? How can we prevent medicine bottles from becoming offensive weapons?  What is preferable - being hit in the face with a clenched fist, or being scratched with jagged fingernails?  Would a slide from the upstairs to the basement sensory room enhance our ability to quickly de-escalate intense moments? (I can almost visualize the family making a fast escape to the basement in hot pursuit by a 12 year old intent on maximizing impact).

Have you ever distracted yourself at times by  scouring the room for cobwebs?  My personal favorite is to fantasize about an "un holey" wall painted all the same color...

Of course, the thoughts always go back to the attempted cures.  Usually for me, I think of the quack solutions we've tried.  Desperation will make common sense go out the window.  But then again, what really is a quack solution?  Maybe batman therapy really can cure autism?  Why can't magenta colored glasses lower anxiety?

I'll try anything for some sleep....have a good night...

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Holiday Costs

by stevej on 12.30.07 - public

- New closet doors $200
- Repairing four walls with holes - $100 and hours of work
- Broken Christmas present replacements - $20
- School starting...

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My Favorite Autism Book to Share

by stevej on 11.13.07 - public

I enjoyed the book "The Curious Incident of the Dog in the Nightime". It wasn't a true story but helped me catch a view of what autistic individuals ...

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The Unreasonable Person

by stevej on 10.26.07 - public

"The reasonable man adapts himself to the world. The unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depend...

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Something Important - Quote

by stevej on 10.26.07 - public

“People want to be part of something larger than themselves. They want to be part of something they’re really proud of, that they’ll fight for, sacrif...

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