Wednesday, December 12, 2018

Oh Christmas Tree

Guess who still decorates the tree without glass ornaments? When the children were little, it was a safety issue. I blogged about my CHRISTmas tree here.

I pack our tree with items that represent our faith and our special interests. We have musical instruments for the musicians in the family, baseball themed ornaments for our baseball player and fan, ice skates for our skater, and this year, I found butterflies, dragonflies, and hummingbirds to attach to our tree, for me, because I enjoy photographing those three flying creatures.

What do you put upon your tree or trees?

Tuesday, December 11, 2018

Disability Advocacy for an Adult

The world of adults who have a documented disability is a new world to me, and in 2018, I think there would be more roads paved into the world. I am discovering it is a new circus, new monkeys, and just as frustrating and time consuming as the world of disability before adulthood. Here's what I'm dealing with this month.

My adult who has a disability is served by a waiver in our state. Our waiver support coordinator suggested I purchase a membership to some activity (museum, zoo) for community integration, BUT the waiver will pay for ONLY the individual with a disability.

WAIT, WHAT? My child canNOT access a zoo or museum without a caregiver. My child does not drive, cannot be left alone. The waiver won't reimburse a dual membership (individual + guest). The venue won't allow me to purchase a dual membership while providing me me a receipt for an individual membership to submit to the waiver people for reimbursement of the individual part of the membership. Additionally, both our support coordinator and other parents I've connected with say the VENUE is responsible for allowing the caregiver admittance FREE with the individual w/ a disability as an ADA accommodation. (And yes, I found a federal ruling about that.

The parents and the support coordinator say that the caregiver is expected to explain at every visit that he/she is the caregiver and should not be charged admission. Parents say sometimes the venue is understanding, sometimes it is not. I want certainty, not uncertainty.

Why isn't there an option for the parent to submit documentation of a disability for a dual (individual + caregiver) membership at the price of an individual?  I don't know.

In our former state (we moved seven years ago), I asked the zoo there about a caregiver on our membership, they added a special symbol to our membership card that allowed a caregiver to bring my daughter to the zoo or to accompany us as a family. No extra charge. They didn't hesitate. Easy peasy.

In contrast, a venue here says they don't have a mechanism to allow a caregiver admittance with the individual with a disability. We've exchanged several emails.

"Why can't you create an "Individual + caregiver" membership category?"

"Because we are limited to the number of categories we can offer"  
Why can't you offer what the venue in the other state offered? A symbol on the card that allows a caregiver ticket to be printed with each visit? 
"...our cards have a maximum party size attached to them and the SINGLE would only admit 1 at the scanning station, the caregiver would need a ticket to be scanned in each time or be on the membership card [GUEST], otherwise our gate staff have no way to count the attendance."
The rep from the venue asked for a scan of the letter that caregivers present at the ticket booth, they'll accommodate my child with a dual membership at the cost of an individual using some complicated algorithm of discounts. LETTER? I head over to a mom's group and ask them - they have never heard of such a caregiver letter.

So, I wrote a simple statement, attached it to an email, the rep at the venue says, no, that's not official. She wants to know if the support coordinator has an official letter. So, I email him. And no, he's never written such a letter. He tells me to just pay for the dual and he'll try to get the individual portion covered. He misses the point entirely. While we as her parents are able to cover the difference today, at some point, my child may NOT be ABLE to cover the difference for a dual membership and some families can't cover the extra for the dual now, and we need a policy NOW that gives individuals in her situation a way to access both community integration funds AND a community integration activity.

Adults who have a documented disability and funding for community integration need a dual membership option to access a zoo or museum that allows a caregiver that is covered by the waiver or other services that are meant for community integration.

The rules and red tape are ridiculous. This stuff takes up time and energy. We should be able to handle this in one phone call or email, but apparently we are years away from that level of understanding and preparation for our adult children who are disabled and require a caregiver.

The GOOD news is the venue is going to do what it is supposed to do and at some point, soon, I hope, and before the end of the year, I hope, my adult kid will have a membership to a beloved venue that allows a caregiver to accompany as an accommodation.

Friday, July 13, 2018

No, Thank You (or just "NO")

Dear Multi Level Marketing People: 


Some of you MLMs are too aggressive. Strangers to me with whom I share mutual friends try to follow me on social media. I peek at your page to see exactly who you are, and see post after post of product. NO. I don't want you to follow me and I don't want to follow you.

Please no cold calls from strangers. This one came today in a Facebook message request:
Hi Penny! How are you?? I totally realize you don't know me, but we have several friends in common at X High like XX and Mr. X. I have or I guess had a student there - Ben just graduated!! 🙂 I am reaching out to you today in hopes that I can share a bit of my journey with you since I launched my business 2 years ago. The blessings have been abundant in so many areas of my life, as in life changing personal growth, more time and financial freedom and so many enriching relationships!!! My heart and life have been so opened to the desire of wanting to help anyone I can through this business! No pressure at all, but would you be open to just chatting and hearing my story to see if this could be a life changing journey for you or maybe even someone you know as well? 💛 Thanks !!
This happens to be one of the businesses I invited to donate to a silent auction charity fundraiser. What did I get? SILENCE for our silent auction. Your company did not earn any points with me for that.

I'm lonely. At a time in my life when I should have a group of girlfriends who have my back, I have none. I moved to a new town as I was having children and then one regressed into the world of autism. Making friends is hard for a special needs mom. Then we moved again. I moved to this town seven years ago and am a 24/7 caregiver to an individual on the autism spectrum. I'd love to cultivate some friendships. I'd love to have a posse. I'd love to have a girlfriend group to do things with. 

But not for the price of becoming the downline to a stranger who uses friends to cold call people. 

A facebook friend of mine commented:
"How disappointing when you would like human contact but are considered a mere sales opportunity. It isn't about the words. It's about a salesperson taking advantage of another person's good manners in order to make a pitch."

If you have the desire to help me, get to know our family. Offer to autism-sit with our teen so my husband and I can have a date night. 

You need another downline to enrich your pockets. You're not looking to be a helper to me or my family. 

Your social media profile screams Rodan and Fields.

Hey, Stranger: Do not interrupt my day to try to get me to join your MLM.  

My response today was, "No thank you". I don't know why I feel the need to be polite. What I meant was "NO." 


Wednesday, December 6, 2017

Different. But Equal

We arrived at the rec center early and opted to sit in the car for a few minutes to kill time there. I watched people enter and exit the building. The front door is a long way from the rec center. I am envious of women who enter and exit together, side by side, laughing, chatting, wearing exercise clothing. I wish I had a friend here to meet at the gym. We are too new here; I haven’t had time and opportunity to grow friendships.

I saw two men walking the long sidewalk, one behind the other. Their silhouettes provided information. I am an avid reader of non-verbal information. The young man in front was taller and younger, my guess, around 20 years old. The man in back, two or more feet shorter, was older; his features more mature, and his gait told me he has some special needs. From a distance, I saw Down Syndrome.

The contrasts were striking. Not only were they separated by at least two feet in height, one walked three or four feet behind the other. They walked the long sidewalk to the front door to the rec center so differently than all of the other couples I’d seen.

A few minutes passed and my daughter and I headed into the rec center. My homeschooler was taking a class with other homeschoolers. I escorted her to her classroom and found a chair in the lobby and prepared to read books from my tablet for the hour and a half.

And I watched people walk by. People who arrived together – to exercise together – came in side-by-side, just as they had on the sidewalk.

Those two young men walked through the lobby four times while I was sitting there. Every single time, the shorter, older man, the one with Down Syndrome, trotted three or four feet behind the taller, younger man. Not once were they side by side. Not once did their body language say, “We are together.” To me, it said, “I let him come with me.” What I saw was "you can't keep up with me so I won't expect it". One was actively going to the gym; the other, passively being allowed to come along. One trip past me, the man in back was trying to talk to the man in front. Right in front of me, the younger man pulled an earbud out of his ear and turned around to hear what the man behind him was saying. I had not noticed the iPod until then. The younger man in front was shutting everyone out – even the person he’d brought with him – to give his attention to whatever was on that iPod.

The contrasts continued to weigh on my mind. Women entering the facility together walked side-by-side. Equals, even when not close in age. Men who entered as pairs also entered side-by-side. Equals. Mixed gender couples – you guessed it – side by side. Chatting, staying alongside one another, moving together.

I began to wonder who the two young men are. Brothers, I guessed, with the neurotypically developing younger one bringing the older brother with Down Syndrome on his trip to the rec center to work out. Nothing in their body language, nothing in their non-verbal communication said “equals”. Maybe the taller, younger young man is a caretaker or respite worker.

My mind began to wonder. Is this the way we treat my child who is developmentally delayed and on the autism spectrum? When we walk from parking lot to building, do I expect her to dutifully trot behind me? Or do I bring her alongside me, a partner, an active participant? And how do her siblings treat her? Side-by-side? One of us? Or separate, “allowing” her to come along, follow along?

 I think I know the answer to this. We’ve been working on non-verbal coordination and co-regulation for too long. But I want to see. I want to observe myself with her, because, as I watched the two young men, so un-equal, I want to be intentional to make sure my daughter is included, is equal, is walking beside me, beside us. Her job is not to trot dutifully behind. Her job is being a part of. An important part of.

Too many times I’ve stopped in a parking lot, turned around to wait for her, silently, to allow her to notice that we were having a breakdown in interaction, to allow her to realize that she’d fallen behind. I waited silently in non-verbal expectation that she join me, a message that she is an active participant and equal shopping partner with me. Too many times, I’ve stopped at waited during times when she went ahead of me, while I waited for her to shift her own attention and notice that we were no longer together, to wait for her to come back to where I was and join me.

But I hadn’t assessed us lately. I had not observed us lately. How am I using myself to give her opportunities to grow and to experience how-people-are? I want to make something clear. I am not referring to “training” the individual with a developmental disability. It's not "training" - it's offering opportunities. It involves the neurotypical individual slowing down, making room for, EXPECTING the individual w/ DS or autism or whatever to "come alongside", and making themselves "possible" for that to happen. (“Possible” is a term that Dr James D MacDonald of Communicating Partners uses.)

Our kids learn through experience - they need practice through actual co-regulating and coordinating, NOT through prompting, telling, instructing or training. Homeschooling gives us more time with children with special needs to practice “being with”, “being a part of” if we have “being with” on our radar.

When I saw the young men at the rec center, two things happened. I began to self-assess and make plans to keep this concept toward the top of our objective list and I began to compose a blog post in my mind, so that I can share this concept with others. Being intentional to include our kids with special needs means including them in the little moments, too. I wanted to remind you of that. And remind me, too.

Sunday, April 9, 2017

Gluten Free Buford, Georgia

One of my gluten-free (and more) girls and I recently traveled to Buford, Georgia, near the Mall of Georgia. We found two fast food restaurants that have gluten free menus with special procedures for handling gluten free orders and had good experiences. Disclaimer: We are simply customers sharing an experience. Please do your own research, ask your own questions, determine your own comfort level with eating from a gluten free menu in any restaurant, including these two.

Uncle Maddio's Pizza is an assembly line pizza place where diners choose a crust, a sauce, a cheese or cheeses, and pizza toppings. Gluten free pizza crusts are stored separately and we were guided to a separate serving bin for toppings. Maddio's has an assembly line salad, as well. I wish they had a honey mustard dressing or plain olive oil.

 The employee changed his gloves, the process was quite careful. I learned after the fact that the store owner (who also owns a Gainsville store) has celiac disease and has trained the employees well. The process goes like this according to store owner Melissa Welborn
"The staff should direct you to the other pizza line to handle the gluten allergy. That line should be wiped down because we have to use that board sometimes for other food prep. The gluten free pizza line is normally kept covered until it needs to be used. Once the pizza goes in the oven, it is tagged an allergy. The person cutting pizzas is directed to change their gloves, and we have a separate tong set in a black container that is only used for gluten free pizzas. They use those tongs to pull the pizza onto the smaller pizza peel that is only used for gluten free. Then they use a hand roller pizza cutter that is stored with the tongs in the black container to cut the pizza. Nothing they use for a regular pizza should ever touch your gluten free pizza."
Maddio's also has a dairy free cheese substitute.

At every other pizza place we've tried, we have to cross our fingers and hope the staff are being careful. At Maddio's, the process is out in the open. Every step is observable from the assembly line.

My girl gave it two thumbs up! I am experiencing reactions to tomatoes and cheese, so I got a small crust with a garlic olive oil sauce. It wasn't very garlic-y and I probably could have asked for the garlic olive oil on a romaine salad.
#   #   #

The other restaurant we tried while visiting Buford, Georgia, is Burger 21. This was our second trip to Burger 21, as we ate there at a trip through the area one year ago and had a good experience. This year's experience was a little lacking.

Burger 21 has an extensive gluten free menu complete with a gluten free bun. My complaints: We opted to have a bunless burger and the Burger 21 cashier tried to charge us for the gluten free bun, which is an extra fee. And our "medium well" burgers were bright pink and bloody. I should have sent them back, but I hear horror stories about employees messing with the food of people who send items back. We wound up eating the edges, eating around the pink of the burgers. The manager did stop at the table and I asked him if this is the restaurant's definition of medium well, and he said, "no" and told me I should have sent them back. Oh well.

Here is my burger on a gluten-filled bun (I failed to photograph my daughter's burger).

Fast. Food delivered to the table. Attentive staff. Watch the charges if you order a bun without a burger and check the doneness of your burger when it is delivered to the table.

Happy Travels,



Saturday, December 3, 2016

AMY GRANT Tennessee Christmas

Our family was excited to receive a review copy of AMY GRANT Tennessee Christmas. We own Amy Grant's other Christmas CDs, including her first, "A Christmas Album" in two formats (we had to upgrade it to CD from cassette at one point).

Right off the bat, first song, the album is like an old friend walking through the front door, with Tennessee Christmas, warm and familiar, yet slightly updated. And like that album we love and still play from 1983, AMY GRANT Tennessee Christmas,
gives listeners a variety of songs and styles, from classics to brand new and sacred to secular. Some songs have what I would describe as a light jazzy arrangement. (My daughter who is a music major will cringe at that description, but she is not home yet from college to give me a better term. Oh, and Amy & Vince, if you ever need a French horn player for your next Christmas projects, I can hook you up with a great one, and she attends college near the Music City.)

Hubby and I are listening to the album again as I gather my thoughts for this blog post. He's really picky about Christmas music. And he gives this one two thumbs up He is reading the album liner notes beginning to end and reading bits and pieces to me. And he's quizzing me. "Who wrote this?" "Well, dear, I am pretty sure Irving Berlin wrote White Christmas." (Hubby 0. Me 1.) He tells me that Grant has never performed "Joy To The World" so slowly and it allowed her to really focus on the meaning of the words. And hubby agrees with her. He's not usually a fan of slower songs, and yet he really likes this one. And he likes the way the softer instrumentals do not overpower Grant's voice.

The album makes us both want to hear Grant live again. We saw her once, at the Hollywood Bowl in the 90's, when she was in concert with SCC.

I had grand plans to listen to this CD while out and about, running errands. I love a good sing along, and in the car, alone, I am quite good. *wink* But I have been stuck at home for over a week with an upper respiratory bug, not able to join in and sing because any attempt to vocalize (spoken or in song) would send me into a big coughing fit. Forced to simply listen this time, Amy Grant is a joy, as always. And by the time my voice is healed enough to sing along, I will know most of the words. Bonus!

Amy Grant and her team are asking fans to upload any videos they may have of them surprising loved ones for the holidays to social media using the hashtag #TNChristmasSurprise! . They will be making a compilation video similar to this one and posting it to Amy’s socials – this specific video has not been announced yet though.

You can buy AMY GRANT Tennessee Christmas here. You  know you want a copy. And until you own yours, enjoy this cut from the CD:

Merry Christmas!

I was given a copy of the AMY GRANT Tennessee Christmas in exchange for a review on my blog. I am not obligated to provide a positive review. 

Tuesday, November 29, 2016

Bible Journaling Kit Guest Review

I was given the opportunity to review this Bible Journaling Kit from Ellie Claire, a division of Worthy Publishing Group. I am not (yet) a Bible journal-er, but my college kiddo is. She has some colored pencils, markers, and watercolors that she has been using since she got her journaling Bible in June. She was happy to test drive the kit and tell you about it.

The kit is a good beginner set, especially for a child or a solid addition to existing journaling tools. The pencil twists are sturdy, the stickers are something kids always love, and would be a solid tool for an individual with fine motor delays who'd rather use stickers than handwriting. (Go here to find five free printable coloring sheets and to enter to win one of five kits.)

The kit would make a nice Christmas gift, a thank you to a neighbor or teacher, birthday gift, or addition to your Bible journaling art supplies.

Here are my daughter's photos and comments:
The kit includes:
· 4 sheets of word stickers
· 4 sheets of alphabet stickers
· 24 tab stickers
· 8 colored pencil twists
· 1 journaling pen
· 1 pouch with adjustable strap to fit Bibles of all sizes
· 1 ruled page protector mat with tracing lines 
(the Bible in the photographs below belongs to my daughter and does not come with the kit)

The kits are available for purchase for approximately $20 at these locations

My girl says the case is cute, and while supposed to be big enough to hold a Bible, is too small for her Bible. She is using the case to hold her journaling supplies.
She says the colored pencils mark a bit light, but they're good for background work and shading and stuff and they compliment her other journaling tools well.
The tracing tool and the pen are her favorite items from the kit. She does not use stickers in her Bible, and while she says they are nice quality, she has not used them.

My daughter is enjoying Bible journaling. It allows her to illustrate verses that helps her keep them in her memory. This kit is a welcome addition to her supplies. I hope you enjoy it, too


Wednesday, September 7, 2016

Mom's Hummingbirds

My homeschooler and I spent Labor Day at my mother's house.

When I was there in May, Mom showed me a nest in one of her ferns. And we were surprised to see a cowbird egg alongside four other eggs. We got rid of the cowbird egg.

My mom has quite a few hummingbird feeders, which have paid off with lots of hummingbirds. I wanted to take some pictures of them. They know my mother. When she comes outside, they flock to her feeders and come close to her, clearly comfortable with her.

When I was outside, alone, the few that were willing to come toward me (not close to me in the way they come close to my mom) observed me from a distance. Sitting...
Or mid air... 
We have spent some time reading about cowbirds because of the egg we found in the nest in May. Now, we can spend some time reading about hummingbirds.

Monday, August 8, 2016

Left Out

Friday night and Saturday, my social media feed was overloaded with posts from a local conference for Christian women. Even folks from my hometown, which is two-and-a-half-hours away were here for the conference. I would have loved to have gone to the conference, but did not want to go alone. Drive alone. Find a place to park. Walk alone. Sit alone.

So many of you attended the event together in big groups. I saw the photos.

I don't have a group. I am a caregiver.

Church women, if there is a caregiver among you, a caregiver who does not get to be actively involved with you at church, a caregiver whose attendance is sporadic at best, please invite that caregiver to events, to ride with you, walk with you, sit with you.

Caregiving is isolating. We may look uninvolved because we aren't committed to church and Sunday School. But we are uninvolved because we are committed to a family member with special needs instead.

Remember us.



Sunday, July 10, 2016

Why My Daughter Hates "Brave"

My daughter wrote,
"I hate "Brave" because Elinor acts like a baby. She acts like she knows everything but not about being a mom. She acts like a toddler when she gets angry and she throws her own daughter's bow in the fireplace! Who does that???? Well, there you go. I HATE "BRAVE"!!!! 

PS: Mom's letter is here.
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