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,

Penny

 

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!
Penny

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

Penny

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.

Please.

Penny

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.

Friday, July 8, 2016

The Life We Never Expected Review

Expectations. Mine have been shattered over and over. Shattered expectations at church carry the deepest hurt, cause the most painful wounds. I have to remind myself that Christians are human and they are not God. When humans are not good ministers to families like mine (with a child with autism who has lots of co-occurring conditions), it reflects on them, not on God. I have to keep reminding myself of this.

I struggle with the difference between what is and what should be, continuing to reach what should be. The battle is real.

Authors Andrew and Rachel Wilson are parents of two children with special needs. They are Christians. And they wrestle with the same opponents that I do. Expectations. What Should Be. What Is. The biggest battle is the one happening in my head. And they, like me, make progress and then regress, back and forth. They understand.

The Wilsons arranged the chapters of "The Life We Never Expected" in five sections: weeping, worshiping, waiting, witnessing, breathe. Rachel writes some of the sections and Andrew writes some of them.

I always hold my breath a little bit when I read a book by Christian parents of a child or children with special needs. I have a lot of pain and grief, and I know my God can handle my pain and my grief, my negative emotions. I don't want to be criticized for having negative feelings or for admitting the emotions that are ugly. I do not want to be preached at in a holier-than-thou way. I want to be understood.

And the Wilsons understand. The book is loving, not preachy. Real, not rosy. I love that they reference the Psalms so much in the book. Sometimes, I think I spend too much time reading the angry Psalms, but it is there that I see myself and it is there that I am understood. I know I can't spend all my time there, and yet, being there, hearing the Psalmist's cries, is comforting, because I am not alone.

The Wilsons clearly have more skin friend and family support than we do. We have zero.
"These days, we can't even get through the day without the church, let alone save the world. We are totally dependent on a community of people--people who help, encourage, pray, serve, take responsibility--to be fruitful in any way at all." Andrew writes on page 47
and 
"Something especially bad happens, you hit a new low, and you cry out for help from y our friends and family, who rally around to help in a short, intense, and irreplaceable way."  Andrew writes on page 63.
They have live in support and a set of grandparents who help once a week. Yeah, we don't have that. Family is 150 miles away (which is better than the 600+ it was for many years) and we have not been able to build a network of support in this town where we moved five years ago. We stopped going to church because the obstacles were too great.


I still struggle with comparisons. I am a work in progress.I am trying not to turn the book's anecdotes into a pity party. And in this book, the Wilsons give me solid, doable, practical suggestions on how not to become a pity party.

The book retails for $8.82 on Amazon at the moment I am typing, is 152 pages short, yet the material is solid and useful. The book is physically small enough to fit inside my purse if I want to read it in a waiting area while my child is in a class or lesson.

There are two sections that really jump out and grab me right now, where I am. One is written by Rachel and one is written by Andrew. Rachel's reminder that my first thought, my first reaction to a situation or event is often not to be trusted touched me deeply. It is something I have learned about myself but have never articulated, and Rachel articulated for me in a section about finding joy. I needed that. I strongly identify with Andrew's section on prayer at this moment in time.

 I suspect this book will be one that I return to again and again and a different section will speak to me each time, depending upon where I am in that moment. I tend to identify with Rachel in a big way and not as much with Andrew. I wonder if my husband reads the book if he will identify more with Andrew? More books seem to be written to the moms and this one is geared to both the mom and the dad.

"The Life We Never Expected" by Andrew & Rachel Wilson is a wonderful resource for a family with a child or children with special needs.

PS: Andrew & Rachel: I have 15 years of notes about sleep and autism in one long blog post here if you are interested. Maybe something in it will be helpful at your house.
"Disclosure (in accordance with the FTC’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising”):  I did receive a sample of the product in exchange for this review and post.

Friday, June 10, 2016

A Safe Place

Dear Autism Theater Program Director,

You have a PhD and "expertise"in emotional regulation in autism, yet your technique to assist my daughter in calming down was to shove her into a chair and whisper yell to her to "get control". You poured gasoline onto her fire and pushed her headfirst into meltdown mode.

She needed a full year after the damage you did before she would try another theater program.

Today, in a theater camp for typically developing kids, she was on stage for the third production since the mistake that was your "program" two years ago. Was her week without any bumps or rough spots? No. However, with no one around to treat her as if she is autistic, no one to shove her into a chair and threaten her, with no one to provoke her into a meltdown, and instead, surrounded by people who are reassuring, people who treat her anxiety with care and respect, she flourished.
My girl grew a LOT off stage this week, working through frustration and anxiety, and I am so grateful to the two musical theater camp directors who provide this safe place for her to learn and grow and to get some musical theater experience at the same time.

I love to see her perform on stage. She was a very amazing hummingbird today.




PS to the PhD at the autism theater program: I am still waiting for your call to check on my daughter. You said you'd call me tomorrow. That was two years ago.

Monday, May 30, 2016

Mother & Son, The Respect Effect


http://loveandrespect.info/mother-and-son-the-respect-effect/
I had an opportunity to review Emerson Eggerichs' new book.

As I read, Mother & Son, The Respect Effect by Emerson Eggerichs, PhD, I feel as if I am looking in a mirror. I suppose that I expected a one sided book about how males are, and instead, Eggerichs gives me quite a lot of information about how females are in contrast to how males are.

Eggericks teaches me that "Love-talk is the mother tongue of mothers." Yet, our boys' first language is that of respect. My entire framework, the lens through which I view life, is a lens of love and relationship. The men in my family view life through the lens and framework of respect. And love and respect are very different.

Hint: Appendix A at the back of the book is a quick start guide and I wish I had discovered it first as an overview. :) 

I recognize that my daughters are very different from my son, and I have wildly different relationships with each. I know that girls are different from boys in the way we process information and approach relationships, but I have never been able to define or qualify what makes interaction with my son so different. And in the first chapter, Eggerichs has me hooked. A-ha moment after a-ha moment. More than a little overwhelmed. A lot of the information applies to my relationship with my husband, too. I am convicted with a desire to change. I wish I had had this book a decade ago.

Eggerichs recognizes that this language of respect is not a mother's first language, and he reminds the reader that it is okay for this language of respect, this filter of respect, to not feel natural to a woman when her interaction filter is love. Eggerichs also reminds us that the differences are differences, not issues or right and wrong ways of communicating. He addresses a mother's resistance and the questions she might have in an entire chapter (chapter eleven).

There is so much to like about this book. Chapter 3, "A Game Plan" is about being a guide. RDI families who are familiar with guided participation in autism intervention will really appreciate this chapter. Eggerichs gives readers an acronym from GUIDES and helps us apply the concepts (along with the concepts in chapter four) throughout the book with lots of practical examples. (RDIers will love the examples of declarative statements.)

Eggerich's observation that many mothers say their boys ask, "Can we stop talking now?" is reassuring. It's not just me.

What if the son doesn't behave in a way that he deserves respect? Oh yes, Eggerichs addresses it here.

I know that some of my readers are secular homeschoolers who tend to be very selective before using a Christian resource, and from that viewpoint, Eggerichs does reference related scripture to provide a foundation and to illustrate his points, and yet it is not in an 'in your face', holier than thou, preachy kind of way. If you are not a Christian, you will find the material in the book helpful for parenting a child of the opposite gender. (Yes, there is enough info here for men to have some understanding of their daughters even though the focus is on moms with their sons.)

I urge you to go to http://loveandrespect.info/mother-and-son-the-respect-effect/ and watch the videos that Dr Eggerichs has produced for us. Scroll to the bottom and get the first three chapters free.

Love and Respect's facebook page is here.
The blog is here.

I am so glad I got the opportunity to review Mother & Son. I hope that I am able to take the information in it and make course corrections in myself that make for a stronger bond between the men in my life and me.

Penny

"Disclosure (in accordance with the FTC’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising”):  I did receive a sample of the product in exchange for this review and post.








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