Whose Mess??

“Family meeting!” I yelled. “Everyone  come to the kitchen!”

As my three teens gathered around me, I asked, “WHO made the mess with the coffee grounds??”

Someone had removed the lid of the coffee grounds container and made a mess with the grounds on the counter and on the floor.

“Not me!”

“Not me!”

”Not me!” chimed my kid’s one-by-one.

But then I notice a clue… and I know who made the mess.

You little stinker…

Can We Talk About Hugging?

It’s something that comes up over and over and over again in the world of disability and special education.

The hot topic: hugging.

Seriously.

At some point in the history of special education/ special programs, someone decided that it was inappropriate for a person with a disability to greet people with a hug. And they set out to eradicate the practice of hugging altogether for those individuals who present with a disability or other social difficulties.

The argument is that it’s inappropriate. We should replace it with a more accepted practice of handshakes, fist bumps, or high fives.

If you are reading this blog and thinking I’m making this stuff up, then you either don’t have a child with a disability or your child is still young enough to have not started hugging yet or still young enough that the powers that be deem it still age-appropriate. But I assure you, this popular and ultra-important mandate in the world of special education is a real thing and at some point you will discover the truth that this vendetta against hugging is regarded in a much higher level of importance than even most academic skills. Really and truly. Just wait.

If I had a dollar for every time an aide, teacher, diagnostician, or other professional addressed this issue with me, I’d be able to afford a huge social media campaign to change the world’s view on this topic.

Can I just state a fact?

Hugging is an appropriate greeting for a girl.

And I’m going to get crazy here and add that it’s also an appropriate greeting for a boy.

I can already hear the gasps of the special education professionals in the room. It’s okay. I’ve made them gasp before. And there are plenty of those professionals whom I love dearly, and they know I’m nothing if not an honest, state-it-like-it-is mama. And, perhaps surprisingly, most of them respect and appreciate me for it.

So, yes, hugging is an appropriate greeting.

My daughter is a hugger. It’s who she is. It’s what she does. I cannot tell you the number of times I’ve heard someone tell her that they love her hugs. Many a person has been blessed by Chloe’s hugs. Some might go so far as to say it’s part of her gifting… blessing others with a hug.

And there have been plenty of people in Chloe’s 17 years who have made it their goal to break her of it. Some have even tried to incorporate it into IEP goals. (Again, folks, no hard feelings to those who have tried to eradicate Chloe’s hugging. I recognize they were only acting on what they had been taught to believe was important and appropriate. I believe they all had the best of intentions, and most of them LOVED my kid.)

But, no. We aren’t gonna do that.

Let me ask you a question. A couple of questions.

When was the last time you saw a teenage girl walk up to a circle of her friends and offer a handshake to each of them as a greeting? Mmmmmm, yeah, it’s been a while, hasn’t it? Teenage girls don’t do that. I’m guessing her friends would think she was a weirdo actually.

Let’s remove the wheelchair and the need for additional adult support from this situation… if a typical teenager hugged her friends or her favorite teacher everyday, would you think it was inappropriate and vow to eradicate the behavior? I’m guessing not. It’s totally appropriate for a teenage girl to greet people with a hug. I see them do it all the time. (Clarification: I, of course, recognize that some “hugs” are more than hugs, but I’m not at all talking about lap-dance style hugging…. That’s another topic for someone else’s blog. I’m talking about a quick, friendly hug of greeting.)

So how does Chloe’s disability suddenly make hugging inappropriate? Let me answer that for you. It doesn’t.

Instead of trying to eradicate the hugging nature of my child and so many others, let’s try a new approach.

If there’s a teacher who doesn’t want to hug, let’s have that teacher advocate for herself/ himself and tell Chloe, “No thanks. Let’s shake hands.”

If there’s a student who doesn’t want a hug, let’s teach THAT STUDENT that he/ she can say, “No.”

Aren’t we currently teaching people/ children to speak up and advocate for themselves and SAY NO to things they don’t like? Perfect. Let’s do that here. Let’s have the expectation that people can and will advocate for themselves when taught to do so.

And let’s leave the huggers alone. Let the huggers hug.

Not changing my girl for the world; changing the world for my girl.

The Birth of a Baby


Sometimes the birth of a baby connects two families in a way so intimate that words cannot begin to portray. Sometimes the birth of a baby connects strangers… forever binding them around a single beating heart. Sometimes the birth of a baby forever connects two women’s souls for eternity, two mamas who share a deep mama-love for the same tiny human being. 

And I was lucky enough to experience it. I am fortunate enough to be a part of a bond that I struggle to explain… that I struggle to understand. 

The bond? With a woman 4 years older than me. 

The tiny human being? Zachary, born prematurely… tiny and sick, struggling through his first days of life. 

The woman? The birthmom of my son. The life-giver. 

The story? Adoption. One mom choosing life and love for her tiny, sick baby. Another mom, me, gifted, honored, and blessed with the tiny bundle she had prayed for. 

And, just like that, two women are connected forever, sharing the love they have for the same son. 

Don’t misunderstand. Adoption includes brokenness, and our story is complicated. Our story includes pain, struggles, awkwardness, questions, confusion, fear and loss. Adoption always does. But our story involves a grace and love from God that heals and soothes and accepts and loves. It’s what makes our story beautiful. 

The gift of life. The gift. The life. 

Separate lives. Separate memories. Separate families. 

But shared connection. Shared love. Shared bond. Shared hearts. 

Our communication wasn’t often. So much was left unsaid, unasked. But the honor and gratitude we shared was yet another gift. I mean, how could either of us ever truly express our thanks?

But we knew. We both knew. 

The few shared hugs, the few shared words, the few shared letters and texts, the few shared days together. The prayers, the thoughts. 

But the deep unspoken things of the heart were just felt, were just known. 

And then this week, the call that she was gone stole my breath. It stuck in my gut and swelled in my chest. She left so quickly, so unexpected. This part of me that she held, that we shared, was yanked away in an instant. How had I never prepared myself for the possibility of her death? How had I not prepared my son for the possibility of her death? And what did it mean for us? That part of me, that part of my son was gone, and the hole it left was surprisingly painful and sad.

The reality is, our lives won’t really change much. I’ll miss my connection with her. I’ll miss bragging on my son to her. I’ll miss picturing the joy that updates from me brought her. I’ll miss thanking her for the privilege of being his mom. But I’m still touched and moved. I’m blessed to have known her and mostly blessed by the gift that we shared. 

I was privileged to attend her memorial service today, to experience the celebration of her life with those who loved her most. Another sweet gift. 

My family and my heart will forever be connected to her family, to her other children… because of DNA, because of adoption, because of striking similarities in facial features, because of love, … because of the birth of a baby. 

 

More than a Paintbrush

Chloe proudly showing the paintbrush that she was given. The leaders let her keep it. And she is in love with it.

“How was your day?” a mom asks when her child climbs in the car after school.

“What did y’all do today?” Dad asks when he picks up his son from Sunday School.

“How was it?” a parent asks after practice or rehearsal.

These are the questions, answers, and conversations that many parents take for granted. They may grumble if their young son doesn’t give them the details they want to hear. But these are daily conversations between parent and child.

Unless your child is nonverbal. Many children have communication disorders that prevent this familiar conversation from happening. These families rely on teachers, siblings, aides, and friends to fill in the details and help with the conversation.

Chloe, my 16-year-old daughter, is mostly nonverbal. She uses some sign language, some verbalizations and gestures, and a communication device to communicate. But communication in general is very tricky and difficult for her. And questions like those above are met with a shrug. She’s never volunteered information from her day or from cheer practice or from church. The conversation and concept make for a complicated communication exchange. She’s learned to just shrug and shake her head. Hearing and understanding the question, thinking back over her school day and choosing something to talk about, forming those words, and then communicating it effectively… it’s a conversation tool she hasn’t mastered.

It might seem strange for a parent of a teenager to never know any details — even a general description— of ANY experience that teen has away from you. Thankfully there are willing people to at least answer general questions on her behalf.

But Chloe has never in her life told me about something she did while we were apart. Literally never. You just get used to it. Yes, you miss it. Sometimes you long for it. But it’s just part of it. It’s just your life.

Thats why it was a big deal this past week when Chloe used her communication device to say 2 words to me when I picked her up.

We were at family camp. After breakfast, the parents enjoyed a time of worship and teaching from 9 to noon while the youth had Bible story, music time, and art.

One day when we were reunited with Chloe after morning sessions, I heard her repeating something over and over on her communication device.

“Soft paintbrush… soft paintbrush… soft paintbrush…”

I acknowledged her words like I always do. I instinctively asked the helper who was with her for the week about the paintbrush, and she told me that, yes, the paintbrush was really soft… it was blue… it was really cool. And she said Chloe had enjoyed gently brushing her cheeks and lips with it.

It wasn’t until an hour or so later that I realized what had happened. This was a monumental moment! A moment to be remembered and celebrated! For the first time in her entire life, Chloe had told me about something she had experienced while she was away from me. She reported back to me. Something happened that had impacted her enough that she wanted to share it and talk about it. And she found the words and means to say it.

Mic drop. Unbelievable. Chills and tears.

What an amazing experience with my girl!

 

The Song

As our departure date for family camp in Alabama drew near, we received weekly update emails from Hope Heals Camp detailing more information about what to expect.

Two or three weeks before camp, the email mentioned a talent show. I immediately knew Chloe would be interested in playing a song for the talent show.

Chloe and I have nearly daily “instrument parties” in her bedroom. Usually she plays cello, her main instrument, while I play ukulele. However, we sometimes switch it up and one of us plays keyboard, or she plays accordion or recorder or harmonica. She would literally play instruments 24/7 if she had her way.

It was highly impractical to take her cello to family camp: The camp was a 12 hour drive away from our home in Ft. Worth, Texas; the cello is quite expensive and fragile and our car would be quite packed with the necessities of camp; and we couldn’t leave the cello in the heat of the car when we stopped at restaurants or other stops.  For those reasons, Chloe decided she would instead play keyboard at the talent show (even though she would’ve much rather played cello).

She and I have a book of 365 songs for ukulele. The book has a great selection of a wide variety of songs. Chloe can read music but prefers to play by ear … and does so very well. I, on the other hand, cannot at all play by ear so I’m very dependent on the book for the songs that we play each day. I told her she could choose any song from the book for us to play at the talent show. Out of 365 songs, she decided we would play Edelweiss.  While I love Edelweiss and think it sounds beautiful when she plays it on her cello, I tried to talk her out of it.

“No one knows that song anymore.” I tried.

“Maybe we should play something upbeat instead…” I suggested.

But she wouldn’t be swayed. Edelweiss it would be.

Fast forward to the first night of Hope Heals Camp. All the campers, volunteers, and staff mingled around the camp fire singing camp songs. At the end of the night, Jay stood up and announced it was time for our Goodnight Song. He explained that it was tradition for everyone at camp to sing the Goodnight Song everynight before bed. It was a special song to Katherine and had become special to Hope Heals Camp. And then he led us in the Goodnight Song… to the tune of no other than… Edelweiss.

It was my first chill bumps and tears of the week. As Jay described it, it was a special God Wink that Chloe had chosen to play Edelweiss later that week.

I’m so glad Chloe didn’t listen to me as I tried to convince her to play a different song. She knows what’s up.

(Additional behind-the-scenes story: On the night of the talent show, I left the book of songs in our cabin and didn’t realize it until we were situated on stage ready to play. Total Mom fail! I leaned over to Chloe and explained that she was going to have to play without me because I didn’t have the book. I tried my darndest to play it by ear/ memory, but that’s completely out of my skill set. Our performance did NOT go as planned. Chloe did fine, but she was so shy and hesitant to play her song while I was destroying it on my end. Truly no one at Camp was the wiser because Chloe just reveled in the applause of all of her fans at the end. I apologized profusely for messing up her performance; she’s forgiven me completely.)

#HopeHealsCamp

#HopeHeals

Flooding Tears

I recently visited a local high school with a friend. Her son who has Down syndrome will be a student at this school next year. The transition to high school is a big one. She and her family have been working on this transition for years, fighting the status quo in our state, which is to keep kids with significant disabilities in special classes away from their non disabled peers.

Special classes for kids with disabilities are called self-contained classes. Self-contained as opposed to mingling about and switching teachers, classrooms, and subjects throughout the day. Typically these self-contained students stay in one classroom all day long and receive their instruction from one teacher with the help of several aides. Sometimes the students in these classes are allowed to go to elective classes or lunch with other kids. But for the most part, they are kept hidden away in private classrooms without any interaction with non disabled students.

My friend and I and several other friends of ours have been fighting against this status quo for years. We believe that our children should be educated right alongside peers who do not have disabilities. We believe that the positive peer pressure from being with these students and the friendships with these other students are life-giving and important. We believe that even if our children can’t demonstrate that they are learning everything the other students are learning, they deserve to be exposed to everything the other students are learning. The difference is literally as plain as our children still learning about the calendar and the weather and counting to 30 in high school instead of learning about the Periodic Table or the Cell Cycle. (Disclaimer: perhaps that is a simplified example, but it is true to what I have witnessed and heard about in Texas high schools)

So the other day while visiting this local high school, my friend and I stood talking in the entryway to the school, right outside of the front office. We stood in an active, busy thoroughfare of the main hallway of the school. We watched groups of students filing to lunch and to the library; then we watched students filing from lunch and on to class. The students, of course, came in waves as the passing periods came and went in the middle of the day. I love teenagers so I enjoyed watching them come and go, laughing or joking or cutting up as they went.

But then, surprisingly, when the hallway was quiet since it was not a main passing period, a group of about 8 or 10 students came parading by. A couple of them were holding hands with teachers and being led down the hall. It became clear that this was the special education class. The self-contained class. The kids with disabilities. The hall was empty except for these few students. They didn’t even pass paths with their typical peers during passing periods. They didn’t even see other kids on their way back from lunch. It was just them in the empty hallway.

My friend and I watched silently.

“Oh my gosh,” I finally whispered. It was as though I had been punched in the gut. I could not breathe as I watched them walk by.

And then the tears came. And they came hard.

Now, I am not a crier. I don’t cry. But here, in the entryway of this high school, I started crying. And I couldn’t stop. I think I mostly controlled my heaving breaths that were trying to escape my lungs as I tried to control my tears, but the tears certainly came.

It broke my heart. It made me angry. It made me sad.

And the emotions flooded.

This. This is why we fight. This is why we work so hard to get inclusion for our kids. This is why we help families. This is why we spread the word that inclusive education is important.

I was overwhelmed with the injustice of it all — the injustice that somehow these students were deemed unworthy to be learning with the other students. The realization that without loud, vocal, fighting mamas– this is exactly where our kids would be, separated from the rest of the world, parading down the hall with these students all the way to their private classroom, away from the other students and away from the rich learning taking place in those other classrooms.

And I realized that all the nights I complain about helping Chloe with her difficult homework from her 9th grade biology class or her Algebra I class, I should have been so thankful that she had the opportunity to learn biology and algebra instead of being ushered down the hall away from those subjects. All of those nights of hours of homework with her are worth it!

That hard World Geography semester review that had frustrated me the night before? I was suddenly so very thankful that Chloe and I were able to struggle through it. Because the alternative is no homework, no world geography, and no inclusion.

That parade of students showed me, reminded me, that everything we do and everything we’ve done has a purpose and it’s all worthwhile. All the fighting, all the work, all the rocking of the boat and questioning the norm has a purpose. We are fighting so that our children won’t be a part of that parade that passes by after all the other kids are in class. We are fighting so that our children can learn everything that the other kids are learning. We are fighting so that when a friend mentions their 3-D cell project or the Periodic Table, our children will know what the heck they’re talking about.

Yes, the tears came. And, yes, it was awkward and embarrassing. But the tears and the emotion were strong enough to remind me of the importance of our fight. The emotion reminded me why we speak up. And the emotion reminded me what we’re fighting for and what we’re fighting against.

I believe that my kids have the right to be educated right alongside the other kids. And I believe that ALL KIDS have the right to be educated right alongside the other kids.

I only wish I could help more students. I only wish I could convince more families to fight. I only wish I could stop that private and sad parade going down the hall while the rest of the world is off learning together.

Oh, how I want to change the world. Oh, how I want to change the status quo.

Happy Birthday!

As I recently explained, Chloe has become quite the party animal lately. Everything is a party. All day, everyday, party, party, party.

Another consistent thing in Chloe’s day is the birthday song. It pairs nicely with the whole party scene, don’t you think?

photo source: cliffordgarstang.com

Chloe has a couple of different apps on her ipad that play the birthday song. And the song has been on repeat for months. We sing happy birthday to all of her stuffed animals and all of her babies. We sing happy birthday to the cello, to the Christmas tree, and to the Walmart employee who brings our groceries out to the car. We sing happy birthday to singers who come on the radio, to our dog Flo, and to the sunshine.

There is a routine to the singing of the birthday song. Once the birthday object has been identified, Chloe plays the song on her ipad, we sing the birthday song, hug the lucky birthday object (if possible), and then we always tell him/her/it to have a fun party. It’s a very rigid birthday routine. The routine is greatly loved and very carefully carried out multiple times each day. If there happens to be something handy that can stand in as birthday candles, then we add blowing out the candles to the birthday song routine, too. Sometimes there are even gifts exchanged.

So fair warning, if you run into us somewhere, be prepared to be the birthday boy or girl! And guess what? You can play along with us and pretend it’s your birthday even if it really isn’t. And if you’re lucky, you might get some pretend candles to blow out and a birthday gift to enjoy for a couple of minutes. Don’t worry. Don’t get weirded out. Don’t feel awkward. Just let us celebrate you for a minute. You just might enjoy it. 🙂

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