Saturday, June 20, 2015

Baseball and Strep Throat

The guys are three hours away at a travel baseball tournament. I took one of the kids to the doctor this morning. Diagnosis: STREP. In the meantime, my brother and sister were able to go to my son's baseball game and have been sending me photos and giving me updates.




Thursday, June 11, 2015

Born in Captivity

My kid with autism says she was "born in captivity" because she was born in a hospital. I suppose she is right. She has such a unique and interesting perspective. Yes, we were born in captivity. Pretty deep.

Monday, May 25, 2015

Shame On You aka What Not To Do at Graduation

My firstborn was graduating from high school. I found a sitter for the sib w/ autism. Finding sitters is a challenge - families with kids with special needs know how difficult it is to find a sitter so that we can be there.

My husband's sister, brother-in-law, two great nieces drove in from another state. So did my mother, my sister, and my nephew. High school graduation is a big deal!

The announcer called her name. Her senior photo was displayed on the big screen above the stage. Two jerks on the row in front of us took that at as a cue to stand up to leave the stadium at that particular moment. My mom was videotaping the moment. They ruined it. We can't get it back. The couple showed no remorse and offered no apology, and for that I am angry. Because my mother was videotaping the important moment, she caught the rude people on video. Their mug shots are below. I see my kid's photo on the big screen and the principal on stage, but that man is blocking my daughter. An apology would be nice. They should purchase the video of the event for our family.

I am thankful that I somehow managed to get a photograph of my daughter shaking the principal's hand. I was at the very left of our row and the couple obstructed my view last of all our family.

SHAME ON YOU:



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.

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


http://www.woodbinehouse.com/main.asp?product_id=978-1-60613-201-2
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

GO!

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.

Frustrating.

Monday, December 15, 2014

Pink

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.

Sincerely,

 
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