Friday, May 8, 2015

Autism Gets In the Way

Autism and its sibling, anxiety, stole from me my firstborn's last high school concert ever. I hate what autism has stolen from us.

Here is where we should have been instead, the concert we had to leave. At least I could sort of hear the music from the other side of the property. *sigh*

Monday, April 27, 2015

Fail With a Capital F

Dear Church That We Have Been Attending:

We have been tag team attending church. One of us stays home with the teen w/ autism while the other goes to church. You should have noticed that the teen w/ autism hasn't been there lately.

Big Sis was part of senior recognition Sunday. The high school seniors are preparing to graduate. You make that day very special for the graduates. You recognized them in every service, you created a beautiful brochure featuring each student, you honored them with a luncheon. Nice.

But you failed with a capital F.


Siblings of kids with autism often get the short end of the stick. They do without. Often. My graduating senior told me not to sign up for the event. She didn't want to be there with just one parent while everyone else had entire families there. She said it was too hard for her. My heart broke. So I did everything I could to get all of us there. And you didn't make it easy.

When you minister to a family that includes a child on the autism spectrum, your radar should be high. "What can we do to make it so you entire family can attend this event?" should be asked early and often.

You didn't ask.

When I asked for a sitter during the luncheon, you said "NO." Why? You offer sitters during other luncheons. Why not this one? Are some families more deserving than others in your eyes? I went around staff to another parent of a senior, also an autism mom, who has been there longer, who knows the people there. She found yet another autism mom to hang out with my child - and that adult is also an autism mom. Autism moms taking care of one another. Why is no one else helping? Why no child care for us?

I tried to ask about the food served at the meal. I was given terse, short emails in return with not enough information. "Stuffed chicken, vegetables, salad, fruit, rolls, dessert" is not enough information to a family in our difficult situation. Going anywhere with food is challenging. You could have made it easier. The harder I tried to get information, the more put-off I felt. On the day of the luncheon, I was surprised to arrive and see NUTS in both the green beans AND the salad after I mentioned our long list of allergens. How dangerous to serve nuts at church.

Thank you for ultimately offering to bake the gluten free dairy free everything free chicken nuggets I brought.  However, getting there was way too difficult. You offered to bake a plain chicken quarter w a gluten free seasoning for her - except she is much more than gluten free and I needed to see all the ingredients. Additionally, I am not sure she would eat your chicken quarter and I needed her to actually EAT. My kid is more regulated when she is not hungry. We would have a higher chance of getting through the event if she has actually eaten. That's why I wanted to bring something I knew she would eat.

I felt as if I were pushing to try to get answers, that I was irritating the church staff, so I stopped. I backed off. And I should not have.

I was royally disappointed to arrive to find we'd been assigned to the table in second row in the middle of the room. A table on the edge near the back would have been better. You put my kid w autism up front for everyone to see if she was having a rough moment, and you crowded people around her. We arrived early, found our table, sat down - and when the last worship service ended and people began filling in the tables around us, my kid began to recite movie lines, began to screech, a sign of her anxiety. Thank goodness that Mama Catherine was standing by ready to hang out with my girl in another room so that the rest of the family could stay together for the luncheon honoring the seniors. However, I would have loved to have done everything I could to try to maximize the moment so my girl could have lasted longer in the luncheon.

The events were lovely, especially the luncheon. Thank you. For that, I am grateful. I am grateful for all of the volunteers who have worked with the youth in the four years since we moved here.

In the end, everything worked out, but with much stress for me, stress that didn't have to happen had you only asked the question, and meant it, "What do we need to do for your whole family to attend together? What can we do to make that happen?"

I hope this post isn't seen as a passive aggressive attempt to air my frustration. I write this for other churches who may be searching the internet for how to help a child with autism in a church setting. I don't think you would hear me. You didn't hear me as I was trying to plan for the event. And the search for a church for the whole family continues.

Thursday, February 5, 2015

The Adventures of Stretch More
One of my favorite professions, Ross Greene, Ph.D., has co-authored a book for children with Tina Epstein, Psy.D. The Adventures of Stretch More (list $18.95) is a 132 page book of "pick-your-path" stories for children and teens.

I adore Dr. Greene! I had the opportunity to attend a presentation about "Lost at School" in Michigan several years ago. Ross Greene, Ph.D. "gets" our kids. He reminds us again and again, "Kids do well if they can."

Stretch More is a kid made of a rubber band who is rigid and is learning to be flexible. The stories in the book are written about common events that happen in all our lives. Each story is broken down into parts where the reader is allowed to choose how he/she would respond in that situation and then the reader is directed to a new page to read material that follows up on that chosen response.  

The Woodbine House promotional materials describe the concept of the book very  well: 

This is the first children's book to demonstrate Collaborative & Proactive Solutions, a therapy method that presumes kids act poorly because they lack the skills to deal with challenging situations. Together, parents and children learn how to defuse the tension and build a more supportive approach to improving behavior. A perfect book for kids ages 8-13 who have ADHD, Tourette's, OCD, or Asperger's that also includes an information section for parents."

My homeschooler and I dove right in. We read about the botched breakfast. Almost immediately, my girl found a way that she identifies with Stretch.  We talk about how she is like Stretch, how she is different from Stretch. And of course, we don't read just the ending she would choose; instead, we read all the endings. The stories give us fuel for discussion later - something I am seeing more and more. My girl needs a long time to process a concept, and we revisit situations and the endings again and again as she processes another bit here or there. The stories themselves and the format of the book is very kid and teen friendly.

Peek inside! An excerpt of the book is here.
Table of contents is here. 
Disclaimer: Woodbine House sent me a copy to review for you. I was not paid for this review and am not obligated to provide a positive review.

Monday, January 12, 2015


My new pet peeve is a social media post that asks for references or opinions and ends the request for help with, "GO!" I hate it. If I see "GO!" at the end of a request, I ignore it. I feel manipulated and I don't like that feeling. Twice, I have had rare experience in a topic and I chose to go outside the social media post to share that experience. I don't like it at all.

Tuesday, December 16, 2014

Costco Let Me Down Again

I don't understand Costco, especially the Costco here (in my 'new' town).

My local Costco often fails to have in stock an item I regularly need/buy. I did not have this problem at the Costco in Michigan when we lived there.

My Michigan friends tell me what a wonderful selection of gluten free items their Costco has. Ours has a couple of those items, but not as many as my Michigan friends have. I don't understand.

Last week, as I prepared to take a child for surgery, I spent a lot of time on the phone with medical staff in preparation. The day before surgery, I was told that my child would have to consume clear broth and crackers before she was allowed to leave the hospital. I knew I would have to bring with  me to the hospital all of the food for a child with a long list of allergies. I had to wait until someone could sit with my injured child before I could head out to shop. The night before surgery, I headed to Costco for boxes of organic chicken broth - all allergen free and safe for my child. COSTCO. WAS. OUT. OF. CHICKEN. BROTH. AND. DID. NOT. KNOW. WHEN. THEY. WOULD. HAVE. MORE.

I have lost count of the number of times something similar has happened. Costco is like a glorified dollar store - you can't count on any item being in stock, and for reasons I do not understand, Michigan stores carry a better variety of all-natural, organic, and allergen free food items than the stores in the middle of the country.


Monday, December 15, 2014


A week and a half after ankle surgery, the girl moved from a temporary soft splint to a hard cast, today. She chose pink.
The doctors at the bone clinic are always running behind. Hubby waited in the car with the girl until her name was called, then we brought her inside. She stays much calmer that way. The staff members almost make up for the extreme wait. They are excellent with autism. I appreciate that. I like the visual aid offered to my daughter to allow her to choose a cast color:

I still don't understand why any sane or intelligent person would choose to build a bone clinic on a steep hillside. The parking lot is not friendly to folks on crutches or in wheelchairs or using knee scooters.

Sunday, December 7, 2014

NotChristmas Songs

December is here and radio stations are playing holiday tunes. Some radio station playlists are incredibly limited and I become weary of the same songs by the same artists over and over. I wish that secular stations would add Christian artists to station playlists. There are some fun arrangements of by Christian artists that would add needed variety to radio station playlists this time of year.

I change the channel when a NotChristmas song begins to play. "My Favorite Things" from "Sound of Music" is not a Christmas song. Neither are "Another Old Lang Syne" and "Last Christmas" and the worst NotChristmas song ever, "Christmas Shoes".

If radio station managers would get rid of NotChristmas songs, they would have more room on playlists for a wider variety of Christmas songs. 

Please, radio stations. Break the rules, let it go, widen your genre, open your playlists at Christmastime. Add some Larnelle Harris, Sandie Patty, Young Messiah Tour, more Amy Grant, some Michael W Smith, Stephen Curtis Chapman, play country tunes on pop stations and pop tunes on country stations this time of year.

My two cents worth of opinion.



Saturday, December 6, 2014

Broken Ankle

We have had an interesting week for a child with ASD. A slip down the staircase ended in ankle surgery.

Diary entry:
Hospital bracelet:
Recovery room. "Mom, please hold my hand."
Surgeon's autograph:

Thursday, November 20, 2014

Mark Ludy's Wordless Picture Book, NOAH
My homeschooler and I were given a copy of Mark Ludy's wordless picture book, NOAH, to review for you.

NOAH is a rich resource in many ways. Yes, Noah from the Bible. That Noah.

A picture book without words telling the story of Noah...hmmm...I wondered how it would be done and done well.  The pictures must be detailed enough to tell the story. And Ludy does tell the story and more. Ludy prompts me with pictures to imagine what the characters might have been thinking as God told Noah to build the ark and Noah obeyed.

The pictures are colorful, visually descriptive - simply stunning. The illustrations are fun to view. The moon, the animals (including dinosaurs!) (I did not ever imagine a toucan sitting nearby the builders while the ark was being built), the scenery, the people are all very detailed. Ludy's version of Noah has Noah quite the accomplished draftsman. The 'blueprint' of the ark is one of my favorite pages in the book.

Obviously, the pictures tell the Bible story about Noah's ark. But there are many other uses for wordless picture books in a homeschool, especially with a child on the autism spectrum.

We still use an occasional wordless picture book in our homeschool.

Sometimes, text becomes an obstacle to meaning and comprehension in autism. The reader is so focused on decoding words that there is no room for meaning. Wordless stories allow us to focus on the story itself, on meaning, with comprehension.

In all things autism, perspective taking is a big deal. Theory of mind. Shared attention. Wordless picture books pack a big punch where perspective taking is concerned.

My daughter and I can hold the book together and describe something each of us notices on each page. I learn a lot about her by what she notices. It allows me to spotlight an important part of the picture, a part important to the plot or theme of the story.

Wordless stories allow us to tell the story from beginning to end in multiple ways. We can tell the story as an observer from outside the story. We can tell the story from the main character's perspective. We can tell the story from any and every minor character's perspective.

Wordless stories allow US to compose the text while practicing perspective taking. We can write a version for a toddler using just one or two words per page or we can write for a first grader or, as a stretch at my house, we can write an early chapter book. (We will not attempt the chapter book yet, but we reserve the right to revisit that idea in the future as she is more developmentally ready.)

And in NOAH, Mark Ludy gives us something extra that facilitates our taking a closer look. He hides a mouse on every page for us to find. Sometimes, my teen w/ an autism spectrum disorder rushes through an activity with a goal to be finished (something she learned early in behavioral intervention). We have worked for years - and continue to look for ways to work on slowing her down and taking her time to be reflective. Looking for Squeaker the mouse slows us down and provides opportunities for us to notice details we wouldn't notice if we were rushing through with a goal of finishing the book.

I adore wordless books and the potential they offer in our homeschool with an autistic child. The wordless stories with beautiful illustrations and a familiar story usually become favorites. I think NOAH will be a favorite that we revisit again and again.

NOAH retails for $19.95 (it is on sale for $16.95 at the time I type) and is a sturdy hardback. Peek inside the book here.  

"Disclosure (in accordance with the FTC’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising”) I was given a copy of Noah to review. I was not paid for this review and am not obligated to provide a positive opinion.

Tuesday, November 11, 2014

Thank You, Veterans!

Thank you, Veterans and to our service men and women who protect us today! Our little town had a parade.  My wish - a way to arrive at the last minute and still have a place to park. Waiting is a challenge for my kid with autism. We almost didn't make it because we could not locate a place to park.
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