Countdown: 2 Days

At 6:00 AM Wednesday morning, I will be rolling up to the sliding doors inside the parking garage attached to the neuroscience’s institute. I’m having near brain surgery. They will do this transsphenoidal procedure to remove a tumor or maybe it’s two from my pituitary gland. “Near brain surgery” echos in my head at random moments throughout my days. Reverberating from the walls of my skull.

Time flies. I didn’t expect it to.

We are all anxious at the unknown. It seems like I just got put on restrictions and FMLA due to a new injury in my hip. It felt like the surgery would never get here. We had to wait to schedule it because my doctor was going to China. Good reason to wait. We definitely didn’t want to have the surgery right before he left the country, so March 28 seemed like an eternity.

In the meantime, I had more tests done and pre-surgery appointments with doctors. The doctors educated us and armed us with what to expect, but I try to keep my distance from it, so I don’t start playing the what-if/worst-case scenario game (for my This Is Us watchers). But now, it’s only 5 days away. I have to pack a hospital bag. Plan for dog-sitting, kid’s lunches, bills are paid and listed where Chris can find them, passwords, account numbers are updated. These last two or three days, I have had to play the what-if I am not able to take back up all of my responsibilities at home. Is Chris prepared to do those things?

What has worried me more is my kids making it through. Yesterday I got my answer for both kids. Each answer coming in one-one-conversations. I didn’t push, I waited and in the right time, they both came to me and opened up. And the concerns, thus the plan for them to deal with their fears and anxiety is different for each of them.

My daughter has been anxious about the surgery, because she “doesn’t want me to change.” When we asked her what changes she thought would be bad, she couldn’t think of any. A couple of days later, I asked again. I asked her to think about and write down or let us know what change she was anticipating that would be negative. I just needed to give her more time and also permission to explore those thoughts. She needed a person who would be there, if they got to be too much.

When you hear from your kid that the deterioration she has watched you go through for two years say, “I don’t want you to change”, you wonder what she thinks is going to happen. Is she scared of me dying? Being worse off than I am now with walking/caring for them and myself physically? What could possibly outweigh getting rid of chronic pain, stopping the brittle bones from progressing, and losing weight?

Chris and I have been vigilant about not discussing most of my anxieties in front of the kids, so we were confused by what she could want to stay the same. Then she wrote me this letter. Here’s a snip of the first page.

This child has a heart of compassion, love, and creativity that never stops surprising. (Plus I had to add the picture, because she proofread it and revised it before giving it to me. No final copy, but that’s okay. Her mom must be a writer and an ELA teacher…I was proud of her. I think her grandma, also a writer, would be, too.)

Throughout January and February, I was processing through having an actual reason for brittle bones, fractures and the rest of my diseases that are actually symptoms of Cushing’s Disease. Allyson is hypersensitive to other’s needs and emotions., yet my “stuff” didn’t distract her. As I was processing, she managed her own anxiety, started public school for half days, and, then to our surprise, won the January Optimist Club 5th grade Character Trait Student of the Month.

This girl is capable of achieving everything she wants to. Last fall, she really wanted to enter the Reflection’s contest at school. I was again skeptical. I know how talented she is in creating art (I could brag on it and post pictures, but that’s for another day’s reflection.) When she brought the contest information and application to us, I tried to help her think through what she could create that would relate to the year’s theme of “Within Reach”. I felt our discussions were unsuccessful. It was like I was speaking French and she was using American Sign Language. We could not come to common understanding. I didn’t really encourage her at that point. I was frustrated. I didn’t want her to get hurt by submitting something that wasn’t on theme. I didn’t want her to bomb. Her art is so good, I didn’t want to see her discouraged from it.

But in my release of the process, she made something with glitter gel pens that won her 2nd place for visual arts in the Special Artists category at her elementary school. Her picture went to the state level to compete.

This past week, she received a letter letting her know that her artwork was selected to receive Honorable Mention at state level for visual arts in the Special Artist category. (That’s sixth place out of all of the submissions from the entire state of Missouri!) It’s worth repeating: This girl is capable of anything. When I reflected on these things from the last three months, I recognized how her concept of time is a gift. Yes, it still gets in the way of her having an understanding of how she relates to the passing of time. It is a tool for her in using her gifts. It makes her hypersensitive to passing of time and the need for extra supports in using her time/understanding how her day should/could go. What I’ve discovered through her accomplishments and living life is this: Time is relative and is not an obstacle to accomplishing something you want to do, try, or learn.

Time flies. Time stood still. Time is on our side.

5 games to play while waiting

It’s summertime! Officially.

Many parents are spending more time with their kiddos now that school’s out, and a lot of it is spent waiting in public places like the dentist’s office or lines at an amusement park. file0001602761539

I found myself waiting in lines and waiting rooms more frequently with my children, too, and I thought I should share some of the non-electronic ways we spend our time waiting.

Here are 5 ways we play

  1. Questioning/I’m thinking games
    • For younger kids (toddlers, preschoolers, K-1):
      • I’m thinking of... an animal, a vehicle, a shape, a number between…, color, toy, songs, tv shows, family member, piece of furniture, plant, food, etc. There are many categories you can choose from.
      • 20 Questions: same concept as I’m thinking, but you limit the number of questions a kiddo can answer
    • For older kids (2-12 grade):
      1. 20 questions: same concept as I’m thinking.
      2. I’m thinking of... Use concepts your child has learned the past year in school. Example categories are: 3-D shapes, songs, planets, states, presidents, math facts (eg. a multiplication fact that equals 24), noun, verb, adjective, adverb (with these you could give a specific clue such as the letter it begins with); history facts, current event, geography facts, etc.
  2. Math Challenges:
    • For younger kids:
      • Find objects near you that are specific shapes, have a certain number of sides3d5e25e275bdb5c38c8f1d11bafa6575
      • Find numbers (number identification),
      • Find objects that are certain colors, etc.
      • For children beginning to add and subtract, find two numbers and perform either math operation
    • For older kids:
      • Answer multiplication, division, or fraction math problems (if you have your phone or a watch, you can add timing them to answer or recite math facts in a minute or less)
      • Locating objects of certain 3-d shapes, sides, etc.
      • If you are at a store, grab their weekly ad and practice money math
  3. Word/Language challenges:
    • Younger kids:
      • Find objects that begin with the letter…, What letter does a … begin/end with?
      • Find objects or think of objects that begin/end with the blend…(st, str, gr, –st, –sk, –sp, –nd, –nt, –nk, –mp, –rd, –ld, –lp, –rk, –lt, –lf, –pt, –ft, –ct.)
      • Name as many items for a category  (Use the categories listed above with the I spy/I’m thinking games. Such as animals that live in the ocean, shapes, etc.)
    • Older kids:
      • Think of or find around you an example of: homophones, antonyms, synonyms, alliteration, etc.
      • Have a classic spelling bee
      • Name three nouns, adjectives, verbs, adverbs, prepositions, etc. that begin with the letter…
      • Name as many items for a category (things you pack for vacation, book titles, MLB baseball teams, sports you play with …, etc.)
  4. Storytelling (This is my favorite. Our family will often do this at tuck-in time)
    • Younger kids:
      • Begin telling a well-known story, then the next person has to change the next part but continue using the same characters
      • Make up a story. Each person takes a turn adding a sentence. (Some examples of story starters: Once upon a time in a world in space; Joey was on his way to…when all of a sudden a …. appeared out of nowhere; When Sarah woke up, she wasn’t in her bed anymore she was… You get the idea)
    • Older  kids:
      • Each person picks one of the elements of a story (ie, setting, characters, conflict, etc.) Then each person takes turns adding a sentence.
      • Make up a story together where each person only says one word on his/her turn.
  • MadLibs **This is the one time I take liberty with the screen/electronic thing. As a parent, I hold the device downloaded with the MadLib App.** Or you can still buy the books on Amazon, the Scholastic website, school book fair (awesome way to support education, too), or the next time your kiddo brings home a Scholastic order form and keep them in your purse or diaper bag.
    1. Younger kids: For the younger kids, when they don’t know the meaning of noun, adjective, etc. I just tell them a person, place or thing and may need to provide an example.
    2. Older kids: It’s great practice to work on remembering what nouns, adjectives, adverbs, prepositions, etc. are. We also make it more challenging by saying every word we fill in for the story must begin or end with a certain letter (the only place this doesn’t work is when it asks for a verb ending in -ing).

The other important caveats of these waiting games are how to win and the prize. Kids love competition, so being the person who answers more correctly may be enough incentive. In our family, we also may put a cap on how many answers to win (first person to find 5 or answer 5 correctly). What does the winner receive besides bragging rights? Sometimes it’s a mint from mom’s purse or a sticker from the sheet of stickers in my wallet. Younger children may also like earning a penny or nickel. For older kids it could determine who gets to sit in the front on the way home, pick the music on the radio, or what you’re having for dinner/dessert. If you’re still waiting when the game ends, the winner can determine the next game to be played.

Do you have other ways you’ve entertained your kids in public and/or while waiting? I’d love for you to share them in the comments.

Autism Matters: Hear Me

*Disclaimer: This is an emotional post for me and many whose path it may cross. My intention is that it is authentic; let’s be real in our discourse, yet sensitive. Secondly, I am not writing and linking to the post from Today to invite a discussion or debate about genetics versus environmental causal debate.*WAAD

 

 
I love many individuals with autism and each person has helped me grow, find joy, and love without boundaries. The why or even the what doesn’t matter. People are special and have value for who they are. #lovewhatmatters

This particular day was rough. It seems as though I’ve been losing control of everything—being challenged to relinquish control of plans and ideas and perceptions and paradigm. I am overwhelmed at work; it’s the busy season of last minute meetings, teaching the final parts of your curriculum, testing prep, enrollment for classes for next school year, etc.

But this week was rough all over like one of those nubby, rubber bouncing balls that really doesn’t go with any sport, it’s  just a novelty.

So today…today I was reminded why I write.

My daughter has special needs. I could list all the diagnoses; they’re not her identity. But today I was overwhelmed everywhere, feeling like a boat taking on water. She needs me. She needs me. She needs me to make visuals, to be her voice when she cannot find her’s or when her behaviors are her voice (the normal and the quirky).

When I arrived to pick her up, I misunderstood her abnormal behavior that usually communicated she wasn’t ready to leave Grandma’s and Grandpa’s. I was in full on mom’s-gonna-need-a-cry time. We made it home and I hid in the bathroom (if you’re a mom, you understand.) And then this Today article written by Carrie Carriello was in my FB newsfeed. And what I’d been praying for—a friend who understands-really understand—was answered. Here is a mam

aLLYSON SOCCERa who could relate, sympathize, not just empathize, with my life and my inner thoughts.

“I am a much different mother than I expected to be,” she writes.

I cried. I was hit with the emotions of what it means when someone writes what you feel, what you know, but think no one else sees. Someone else deals with the tens of thousands of questions a day about the same thing. Someone else has the temptation to ask, “why”. Ours is not the story of genes and whose side it came from, but our why is: “After the heartache of infertility from painful endometriosis and the year-and-a-half fight to adopt our daughter, why autism, anxiety, ADHD, and sensory processing problems?”

When we write, when we are real it helps others. It was good today to have someone else tell me she does the same things with her child. She has the same thoughts as a mama struggling to do her best and demonstrate patience when answering the same questions day in and day out. Even though there’s routine, even though there are schedules written down and visuals for her routines, sometimes it’s not enough. And then there was this that opened the faucet of tears, again:

“Underneath it all — the tantrums about a missing pillow and the small orange vial with the little white pills and hundreds of questions about the schedule, I know he’s trying to tell me something else entirely.  Make room for me. I am here.” (Carrie Carriello, I Know Why He Has Autism)

I know my daughter’s telling me something when she can only speak with one word, when she throws her body into me or the seat of the car—See me.

 

 

 

My Blue Light Bulb

I’m gonna be honest. Okay, I usually am, but maybe the better word is transparent. Autism is messy. Autism is different every day, and many times it is different every minute of every day. Today after church, our youngest daughter couldn’t hold it together any longer. Whatever it was that she was feeling, whatever it was that sent her over the edge (ie the last straw), I’m not sure, and it doesn’t really matter. She’s processed, coped and moved on. Our community of faith got to see what a meltdown looks like for our 10-year-old daughter who happens to have autism, ADHD, and generalized anxiety disorder. The meltdowns are few compared to the number many parents of children on the spectrum face. But the irony was not lost on myself or my husband as today is Worldwide Autism Awareness Day. 

We typically settle into a quiet, creative afternoon on Sundays. We rest. We reconnect with each other after going to school, work, and doing chores the rest of the week. I’m sure, like many of you, I settled in to browse the many social media outlets programmed on my phone. I light it up blue (Autism Speaks awareness campaign). I don my puzzle pieces at home and at work. Our family is fully aware of the many controversies and debates surrounding autism, “treatments”,  its support groups, and the different causes.light it up blue 2017

But, I don’t really think twice about lighting it up blue, so some of the things in my social media feeds coming across today were shocking. I appreciate another’s perspective on things, but do we really need more causes/opinions to offend us and divide us, though?  Aren’t we missing the bigger picture? 

Our family has lived hidden in many ways. We have protected our daughters from the judgement, the eyes, and the need to conform to certain societal institutions. It’s affected our marriage. We’ve never had a consistent date night. A date night for us is maybe grabbing five or ten minutes early in the morning while the coffee pot percolates or hanging out by the washer and dryer as we do laundry. Finding a sitter is hard. Trusting the sitter is even harder. So for twelve years, we’ve lived hidden. We’ve lived shortened. You arrive on time to events, but leave early. When your daughter is 10, you’re still carrying a “diaper bag” with a weighted blanket, fidgets, snacks, essential oils, and lotions. And don’t forget your alternative method of communication, because even if your child speaks, there are always moments when they need another way to communicate. 

Yes I’ll wear blue (for autism and my KC Royals), because I support the autism community and want you to ask questions. Yes, I changed my light bulbs outside to blue and hope it ignites an open dialogue with my neighbors about the realities of autism, being a parent, and a special education teacher. 

So why #lightitupblue and have an #autismawareness day?

“…no matter how your molecules are knit together in the spectrum of quiet to loud, bold to subversive, and so on, you’re commissioned and permissioned to arrive at life as your own weird and wonderful self,” Erika Morrison, Bandersnatch.

Because it’s about 3 things. 

  1. Be aware. Not just for autism, but for the differences we all possess. 
  2. Educate yourself. After awareness, we can start to educate ourselves and our community
  3. Accept. We all want to be accepted by someone. Eventually, I hope, we accept each other for our differences and similarities, then we will be able to create a community of support and love. 

Because at the end of it all, I want to be known as someone who loved well. 

My youngest blue light. clone tag: 5922361547406362737