Posts Tagged ‘beyond the behavior’

Going off the diet

In 2005, my son Philip went on the gfcf diet.  As I wrote in a previous post, I cried!  But we did it.  Somehow, when the going gets tough, I cry and move on, step by step.

According to the folks at Pfeiffer Treatment Center, if casein (dairy protein) was a problem for Philip, we would see fogginess and an inability to focus. If gluten (protein in wheat, barley,  and rye) was a problem, we would see hyperactivity, severe impulsivity, and perhaps even dangerous behavior. We were to try the diet for at least three months to see if there were any changes.

We saw a lot of change in a short amount of time.  Here’s a short list of some benefits:

  • We no longer worried about his “escaping” the house. (Before the diet, we had actually called the police a couple of times because he’d simply disappeared. Thankfully, nothing bad had happened and he was safe.) About a month after we began the diet, the escaping stopped and we could take the alarms off our doors.
  • We didn’t have to worry about his staying with us when we went out somewhere.
  • His speech increased.
  • He listened much better.

So the diet, although it was a challenge, was a success.

However, over the past year, Philip has been “cheating” on his diet.  The following event convinced me to start weaning him off of the diet altogether.

A few days ago, I came downstairs to find Philip sitting on the couch, a blanket over his head, and heard munching sounds.  I yanked the blanket off of his head, and said, “A HA!”  I discovered that Philip had gone to the garage, opened the deep freezer, pulled out a frozen pizza, unwrapped it, microwaved it, neatly removed the pizza from the microwave, and cut it into slices with a pizza cutter.  He then took a piece, proceeded to the couch, covered up his head, and at his breakfast in secret.

I didn’t know whether to scold him or laugh and  be proud at his self-sufficiency! I ended up having him clean up after himself, throw out the rest of the pizza (because he didn’t ask first), and get on with his morning schedule.

We watched him throughout the day, kept tabs on him at school, and saw no behavior differences.  In the past, we would have seen “off the wall” behavior right away and perhaps received phone calls from school.

Nothing bad reported.  Nada.  Zilch.

Philip is now eating regular school lunch, and is as happy as a clam.  We continue to monitor.  I am keeping my fingers crossed that, by the time we go on vacation this summer, the diet will be history.

Funny thing is, Philip has been having “green” days at school since he went off the diet.  That means he didn’t get in trouble at all.  Wow.

I became a Wildtree rep (see my link to the right) mainly because of this special diet.  However, we are eating so much healthier because of Wildtree that I’m glad I signed up.

Going on the diet 6 years ago lighted our load by increasing our peace of mind.  Going off of it now lightens our load by lessening our grocery bill and giving us more freedom and flexibility.  Just goes to show that change is inevitable, and that for everything, there is a season!

Yes, I’ll get a breather: autism and employment

This past week, the school staff and new case manager asked me,  “Do you see your [15-year old] son living with you indefinitely or do you see him moving out on his own?”

My answer:  “Out, definitely.” (Are you kidding?)

Here’s a quick background: Currently we are working on the high schooler’s IEP. We have also increased his intervention with our local case management unit.  He’s on his way to adulthood, and we are preparing.

Fun times.

I love my boys, but I have got to have a breather.  At the same time, I wonder if I’ll ever truly get one. I wonder if they will be employed and have jobs that they like.  (Read more here.) I wonder if they will support themselves someday, be able to live on their own, with roommates… or, dare I say, spouses.

It just so happened that as we’ve been grappling with these questions,  I’ve also been reading a book called Thicker Than Water: Essays by Adult Siblings of People with Disabilities.  This book is joyfully, and, at times painfully, honest about the adult sibling’s role in care and advocacy.

Like many parents, I am concerned about the possibility of my  neuro-typical daughter being the boys’ main caregiver after my husband and I are gone.  There’s one of her, and two of them. This book inspired me and my husband to seriously start the process of getting a special needs trust going and explore future living arrangements for our sons. We want to provide for our sons and protect our daughter from future frustration and turmoil.

There must be  some divine intervention going on right now in this Givler family household.

All of these questions at once about independent living + reading about care after the parents are gone and sibs are legal guardians+ realizing that my trusty ink pen is from our local Special Needs Planning= God is letting me know it’s time to prepare.

It’s daunting.  It’s scary.  It kept me up a couple of nights.

So today, I happen to receive a link in my email entitled, “They’re assets at work– and they’re autistic.” Upon reading the article, I realized it was Temple Grandin’s presentation that I was privileged to attend last May. This time, however, she was joined by corporate managers who hire people with autism.

Here’s an excerpt of the article:

Workers on the autism spectrum don’t always fit in at first, but with training and a little extra consideration, they can be among the most innovative and detail-oriented employees.

That was the message Thursday from 3M, Cargill and Best Buy managers who took the stage at 3M’s “Autism and Employment” forum, which was organized by the St. Paul-based Autism Society of Minnesota.

I am very hopeful about my sons’ futures.  My sons do and will have a chance to live to their full potential, whatever that may be. Maybe they will indeed be with us “forever”, but maybe they will be independent.  Whatever the case,  I will advocate for them and cheer them on.  I will, as Grandin said in the article, “loosen the reins a little bit.” My boys will flourish.  (And perhaps my husband and I will finally take that honeymoon.)

No more “T” word–Changing my tag line

A photo I saw on Facebook

Today I was reflecting on my blog, and it’s title.  I decided to change the tag line.

I admit that when I wrote the first tag line, “It’s not all tragedy, there’s humor and hope,” I was being somewhat sarcastic.  I roll my eyes now when I hear autism described in such dark terms.  When my son was first diagnosed, I was pretty much told that my life was over.  How wrong they were!

I decided that since I’ve started to see autism as a difference, and sometimes as a different culture / way of being,  why mention the “t” word? Granted, it took me a while to get to this place, as I mentioned in my first post.  I still do research in to causes, theories, treatments, but no longer at the expense of forgetting that my children are people, not problems. Yes, I did that once.  But no more!

My sons show me such courage when I see them embrace their individuality.  I have learned so much from them, not only about uniqueness and acceptance, but about myself as well.

A friend posted this on her blog, Another Piece of the Puzzle. I think it is a good thought for all of us as we begin the new year and continue our journeys:

Dare to be who you are, and learn to resign with good grace all that you are not and to believe in your own individuality.

I am  reminded to appreciate others for who they are, as unique individuals with a unique combo of gifts, talents, points of view, and abilities.

I pray for others to see all of my children as people who don’t need to be “fixed,” but as children, who have a bright future ahead of them.

I pray that my oldest son accepts himself as he is, and know that he is loved.

I pray that my middle guy will continue to be who he is, to be persistent and true to himself.

I pray that my little daughter knows that she is loved and important.

I pray that I would dare to be who I am, accept my limitations, and believe that I am the person God made me to be,  celebrating my uniqueness.

I think I’ll post this quote on my fridge.

Sibling love part 2: Did the aliens take my boys?

Who are these boys and where are my sons????

I thought that my boys tolerated rather than liked each other.  They are both on the autism spectrum but they are so different.

Philip is mathematically and musically oriented– it goes with his perfectionism. Josh has little tolerance for math, likes music but doesn’t want to read the notes. There are more pressing things to be perfectionistic about. (Perfectionism, although in different areas, is definitely a common trait with those two.)

They both like diy stuff but in radically different ways. Philip likes to make the tools talk and act like the ones on Handy Manny.  Josh wants to go into construction.  At 2 years old, he knew the names of all Dad’s tools and helped Dad build a small wooden trailer.  When he’s stressed, he grabs his tool box and scrapwood and pounds away building interesting objects.

Philip doesn’t mind that he’s a loner. He’d rather be alone most of the time. He was one of those kids who had a problem with eloping (hee hee… when I first heard that term I pictured him eloping to Vegas… but not that kind of eloping, of course). Josh likes being with people. When he first moved in with us 6 years ago (he’s my stepson, but I claim him as my own!), he was always two steps behind me.

Philip’s room is neat.  Josh’s room… well, we haven’t seen the floor in a while. When they shared a bedroom it wasn’t pretty.

And so on and so forth.

So today, when I heard this exchange, I was taken aback. For two boys who have communication issues, this was major.  I was so glad I heard this when they were unaware that I was listening.

Josh: “Sorry, Philip, I have to go to school now. I’ll miss you and I love you.”

Philip: “Well, I love you and I’ll miss you too.”

Josh: “You’re the greatest brother in the world.”

Admittedly, Josh did have a sarcastic tone, as most teenagers that I know. Being somewhat skeptical, I considered that Josh might have been joking.   But then again…

This is just one more example that there is more than meets the eye, especially with kids on the autism spectrum: feelings that aren’t voiced, words that aren’t expressed, real human beings behind the stims and the “off” behaviors.

Knowing this lightens my load.  Sometimes I don’t give my kids the benefit of the doubt, and sometimes I get burned out and way too skeptical.

Today– I feel that maybe, just maybe, we have a “normal” family!  🙂