Archive for December, 2010

Things that make my life easier: Wildtree

We had already tried the casein free diet, and were trying our best to stick to it, when a specialist recommended that we do the gluten free, as well.

I cried.

And so my son started the  gluten free / casein free, or gfcf diet, in 2005.   Gluten is a protein in grains such as wheat and barley, and casein is a protein found in milk products.

I began my journey into gfcf cooking, which often times simply flopped.  Happily, I’ve come a long way since then! (I still haven’t figured out how to make gf bread, despite bread machines, mixes, and cookbooks.)

Fast forward a few years.  I was at a local grocery store and saw gfcf chicken nuggets, bagels, donuts, fish sticks, cereal.

I cried again, only this time for joy!

Disclaimer: I am a representative for the company I will talk about next,  and I do make money from Wildtree.

Now, we have several special diets in the house.  GFCF, low sodium, low cholesterol– you get the picture.

Recently I tasted some products from Wildtree, an all natural food company that specializes in quick and easy, allergen friendly meals. Delicious!  And when I went through the product ingredients, my list of things everyone in my family could eat was much longer than the list of things that they couldn’t.  Same for my friend whose son is allergic to peanuts!

I jumped for joy, and then signed up to be a rep, mostly for the life time discount I get on the products, and also to try to make some income for the family.

Life have definitely gotten easier since I signed up to be a rep.   Especially since I can use the natural butter flavor oil for popcorn, in gf shortbread cookies (they taste soooo good), and other things that call for butter. (The butter flavor comes from coconuts.)

Here’s the a healthier, more streamlined, easier 2011!

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Yes, my boys will be responsible, successful, tax payers

I say this only half jokingly.

One of my favorite cousins in the world coaches me to use the words “so they will be good tax-paying citizens” when I advocate for my boys, whether it be in IEP meetings or community settings.  They need appropriate educations so they can grow to be good tax paying citizens, darn it, not people who take money from tax payers to survive!

At first I balked at such language, but when I tried it near some people who had some political pull, I was surprised at how much it got their attention.

I was a parent panelist for a group of early interventionists a while back. When one of the young therapists asked me what my goals were for my children with autism, I said my biggest goal was for them to live to their fullest potential– with jobs, independent living, and lives that they loved.  I suppose another way to say that would be responsible, successful, tax payers?  The therapist seemed to think it was too lofty of a goal.  You wait and see, Mr. Therapist! Haven’t you heard of Temple Grandin?  Sheesh!

I read this article about a place that recognizes the gifts of adults with autism.  They educate and coach them so that they can get meaningful jobs that they love all while making a good income.I have so much hope.  I actually wrote to the head honcho of this organization and gave him three reasons why they should open a campus in my area. (Although I did used to joke with hubby that when I retired I wanted to move to Plano.  Divine intervention?  LOL.) Read all about it!

Star Local News > Plano Star-courier > News > NonPareil at SMU-in-Plano

Dealing with messes, or “How’s it hangin’?”: Hooks

Life in a household affected by autism can be really messy. My mom clipped a newspaper article for me way back in 2007.  Here’s an excerpt:

Someone should’ve mentioned that autism is messy! Wallpaper’s meant to be shredded, bathrooms are designed to be flooded, walls are bare in order to smear stuff on them, washable paint really isn’t, and more food will actually be crushed and dropped than eaten. (Excellent article by Sandy Sotzen. Read more here.)

Finally sick of the mess, and to my hubby’s chagrin, I hired someone to clean. (It was the massage therapist!  She cleans, she massages… and it wasn’t too good to be true! January special: three hours of cleaning and two hours of massage for a great price. WOW.)

She claimed to be very fast.  She seemed to think that she could clean my whole downstairs area in three hours. And also possibly get to the upstairs bathrooms. I just smiled.

It took her 1 1/2 hours just to do the family room.

So we’re not perfect.

My kids and I are visual people.  We need to see things to remember that we have them, so sometimes clutter is a serious problem.

The clutter keeps us from cleaning.  (That, and the fact that the kiddos make “covert” messes that we find days later.) I am slowly steadily clutter busting so that I can have a clean home.   Less stuff, less to clean, right?

So, I am very excited to share a solution that works for us.

Drumroll, please….

I’m hooked on hooks!  (I know, I know…) Here are some examples:

  • I hang my pots and pans on hooks on a pot rack.
  • Hubby installed a towel rack on the kitchen wall, and I attached S-hooks for hanging my cooking utensils.
  • I put sticky cup hooks  inside a cabinet door to hang measuring spoons, etc.
  • We installed hooks on the wall by our front door for  hanging our coats, bags, and back packs.

What makes this so great?

  • My kids can now unload the dishwasher and put away the measuring spoons and pots without jamming a drawer or losing patience with making sure the pots are stacked just so.
  • Re: cabinet door hooks: we can just close the door and avoid creating more visual clutter, but still see “everything” when the door is open.
  • When things are hung, we can see that those things are where they belong and not just in one of the  random piles that multiply like rabbits.
  • It is obvious where the coats and backpacks belong, and  the frustration of things falling in the over stuffed coat closet and taking up all the room for the back packs is minimized.
  • It takes away excuses.  Hanging coat on a hook takes 2 seconds. Finding an empty hanger, wrestling the coat onto it, and hanging the coat– just forget it.

I’m hooked on hooks.  I search for kitchen stuff with holes or loops hanging on hooks. I’ve attached key ring, ribbons, and even yarn onto thing so that they could be hung on a hook.

Hooray! Life is hectic enough without the little annoyances that tip me over the edge. Nothing like mom screaming, “Where is my whisk?!!!! (Yes, in my house, even my cooking utensils are not safe from grubby little hands!) Anyone seen Philip’s coat???? ”  Now I just scream, “Ok, where does that go? Well, then, put it there!”  At least we’ve begun to do away with the excuses, all while playing to the kids’ visual strengths.

Question: How do you deal with messes at your house?

Therapies, or “Wacky things we do that seem to be therapeutic”: Musical mayhem

So this is my first of these posts.  I’m going to swallow my pride and tell the world the wacky things we do to get our kids to do what they are supposed to do.

First off: my kids love music.

I mean LOOOOOVE music.

When Philip was 2 (pre-autism-diagnosis), I couldn’t get him to get dressed. When I say I couldn’t get him to get dressed, what I really mean is I couldn’t get him to get dressed or keep his clothes on.  Nor would he keep his shoes on.  Looking back, I’m not sure if it was a sensory thing or if it was defiance or a little of both.  I remember that he seemed as if he was in his own little world and just didn’t comprehend what he needed to do.  (Sound familiar?)

So I started to sing all the directions to the theme from “Elmo’s World.” For example, “La la lala, la la lala,  Shi-rrt on, la la lala la la lala, shiiirrrt on.” Then we we’d do pants, socks, and shoes. “La la la, la la la la…. that’s Phi-lip’s world!” It worked like a charm.  I even did “la la lala,  la la lala, seat belt on….” and so on and so forth.

When he grew out of the Elmo’s world phase, we graduated to cheers.  “Philip used his fork! Philip used his fork! Philip used his fork, because he’s a big boy! YEAH!”  We used to walk around with a drum, singing “Put on your socks, put on your socks, put on your socks now!” repeatedly until he did it. Then, when he’d do it, we sing, “Good job, good job! Good job, good job!  Good job, good job now!” I wish I could tell you the tune, but I made it up on the spot. Sometimes the whole family would be singing by the time Philip was dressed.

Imagine my excitement when I found out that there was a real music therapy office with awesome music therapists only 2 blocks away from our house.  We got Philip in as soon as there was an opening, and he’s now been in music therapy for 5 years.  It’s been amazing.  We’ve also found out that he has perfect pitch, taught himself keyboard, and has amazing rhythm.  I half jokingly say he gets it from me, since I do after all have a music degree! His music teacher at school says he’s a prodigy. (Proud mom smile.)

So next time you see a family doing something like singing a fork song in a restaurant, try to guess which one at the table is the musical genius!

Sibling love

Today I received the most beautiful photos of my family. They showcase the love that my kids have for one another.

Let me back up for a sec. My friend and fellow “autism mom” is learning to be a photographer.  Well, actually, I think she already is a talented photographer, but she’s taking classes to get the “credentials” (oooh, aaah).  This past fall she took a film photography class and asked if my family would be willing to be the subject of her portfolio.  As the humble mom that I am (ahem…) I said, “Of course!”

Her project for this semester was named “sibling love.”  In it, she had 3 pictures.  One of Philip (10 year old, has autism), one of Meg (6 year old, no diagnosis), and  a picture of Philip and Meg sitting in the tree in our front yard and smiling at one another.  My heart just melts!

Meg is Philip’s best “play therapist.”  She is the one person who relentlessly taught him to pretend:  acting out stories they see on tv or read in books, and running  like a horse, among many other things.  She is his partner in crime when it comes to ganging up on Mom and Dad.  She is the dancer when he plays his keyboard.  She is his translator.

She adores her oldest brother, too, especially now that he has a tv in his room.  They want to have “movie nights” and try to sneak in the not-allowed-except-in-the-dining-room snacks that they love to eat.  She is his cheerleader and defender.

She is trying to figure out the world right now and is wrestling with the autism thing.  She recently said to me, “Philip has whole autism, Josh has half autism, and I have no autism…. right?” Right, honey! Her explanation of the differences on the autism spectrum are as good as any others I’ve heard lately.

I am so grateful that she loves her brothers.  I am so grateful that she sees the gifts in them.

Although I do worry sometimes that Meg doesn’t get enough attention from Mom and Dad and that, as a sibling of two autistic brothers, she has quite a heavy load to bear, I celebrate the wonderful of her love for them (and vice versa), and how they’ve grown because of her (and vice versa).  I often witness her acceptance of others outside of our family who are different.  She is growing into a compassionate, accepting, loving person.

Words

I am thankful for making words.

I read this and froze in my tracks. My son wrote this on his construction paper “leaf” at school for Thanksgiving 2010.

I began to remember all the times we wondered if he’d ever speak to us.  I remembered when he was three years old and, putting him to bed one night, he said, “I love you” to me for the first time.  I cried, and told my husband and called my friends and family, even though it was late.

I recalled how we used to not give him anything he wanted, putting everything out of his reach, until he would say the word for the item.

I remembered how his only words were echolalic terms.  He would only repeat or “script” words from movies, books, and songs.  I remembered how happy I was when he told me the first time, “I want…. Daddy?”, as if he were unsure he could want Daddy.  I remember (as does my husband) how I unlocked the bathroom door where Daddy was… um… busy… because Philip used a complete sentence and expressed that he wanted someone he couldn’t see for the first time!  Philip stayed in the bathroom with Daddy until Daddy was done.

I remembered how we slowly and painstakingly helped him ask questions and request what he wanted, how we used and are using sentence starters to help him have conversations with friends, how we role played before social situations what he could say when someone asked him such things as “How are you?  Do you like school? What grade are you in? How old are you now?”

And, more recently, I remembered with tears in my eyes how happy I was when I asked my husband if he would put Philip to bed and Philip said, “Daddy, tell Mommy no.”  How he answered me now when I asked him how his day was or what he wanted for dinner.

Philip wrote, I am thankful for making words.

I am thankful, too.

Welcome to the lighter side

Ahh, autism.

When my son was first diagnosed, I had a panic attack and then went into an anxious depression.  I believed all my dreams were dashed.  I wondered who this boy I called my son really was.  Previously I was afraid of people with differences or disabilities. Was he now one of “them”? I wondered, “What did I do to make my boy this way? How can I fix it?”

My stepson, who didn’t live with us at the time, had been diagnosed wih autism 6 months prior.  The day of my son’s diagnosis, my husband and I decided to stop trying to have more children. The very next day, I discovered I was pregnant.  I just knew it would be 3 out of 3 with autism and that I wouldn’t be able to cope.

It took me a few weeks to realize that my boy hadn’t changed.  He was still my son– my pride and joy and light of my life.  I dropped the self-blame, and set out to learn all I could about autism, and how to have a relationship with my son and raise him to live to his fullest potential.

About a year after his diagnosis, when my daughter was 6 months old, my stepson unexpectedly moved in with us.  I went from 1 to 3 children in 6 months, and two were on the autism spectrum!  I once again went through a period of extreme anxiety.

I don’t remember how long it took, but one day I saw the lighter side. I could either approach this with a sense of humor or drown in frustration and sorrow.

I chose the humorous approach.  Then came advocacy, social stories, educational journeys… and I approached them also with as much humor and lightness as I possibly could.

Humor and lightness are the approaches that work for me.  Yes, I still get frustrated, and yes, we still have our “moments”, however every day there is laughter in my house.

The goal of my blog is to share with you the ways I have found to lighten the load and brighten my days, and share what I have learned and continue to learn along the way.  Comments are welcome.  Thank you for stopping by!