A New Corner

Robin Apraxia, Grace, Growth, Homeschool, Special Needs Families, Uncategorized September 12, 2016

There has been wailing and gnashing of teeth here on Park Hill Road.

Mostly from me.

It was slowly becoming more and more apparent that I should homeschool my precious little peanut full time this year. A thousand little pieces of information added up to a clear picture: In order to make progress we’d have to make a change.

Homeschooling is time consuming and patience strengthening, but that is not where the wailing and gnashing originated.

I am just so sad that I am the best option for my daughter.

This is not some whoah is me, the sacrifices I must make thing. It is truth.

Last summer my little person and I hopped on a plane and flew to Connecticut to meet with a speech therapist and an aqua therapist. They worked with her and taught me and she bloomed.

When I pulled out of the parking space on the last day, I was a mess. In that school lot, the smell of chlorine thick in the rental car, a new realization was forged in my heart: We only grieve things we are grateful for.

I was so, so grateful for the time we had been given. And I was so, so heartbroken that we had to fly to other side of the country and leave them behind.

People who are excellent at what they do are unique. To see people who are gifted at helping my daughter was vulnerably beautiful. To come home where I have been unable to such find help was hard. And sad.

I had to grieve the loss.

I would MUCH rather have gifted, great therapists to work with my daughter than have to do it all myself as an amateur.

But we have rounded another corner and here we are: A homeschooling family.

I have it all thought out:

I have prayed and researched and I believe God has guided me to the right focus and approaches for Ryan…If I do all I have set out to she will thrive.

If I do all I set out to do, our family will thrive.

My goals for the first trimester are fairly simple:

For my Precious Little Peanut, that means stronger jaw, tongue and lips for speech; and core and hands for writing. For the rest of the family, it would just be good.

Here we are prayerfully, humbly on a new adventure; hauntingly optimistic that we will make progress. This I know: The biggest weak spot is me.

I am flakey.

I can be lazy.

I naturally gravitate toward chaos which means I have to fight me very nature in order to succeed at this.

But God.

I believe HE is for me. I have prayed through my natural laziness and made great strides. I have people praying for my character, so that I may be the educator my daughter needs.

So here and now, for this season, I am coming out of my corner swinging.

My Demented Oreo

Robin Alzheimer's, Apraxia, Grace, Growth, Homeschool, Moments, Special Needs Families, Uncategorized October 11, 2015Dementia, gratitude, imperfection, Moments, paying attention, sandwich generation

I am part of what is called the sandwich generation, tucked between nurturing and growing my children and caring for aging parents. Because I am ~~naturally~~ soft in the middle, it makes sense to me that if I have to be a sandwich, I should be a cookie one.

So I have decided to be an Oreo.

Just over a year ago my father in law passed away from Alzheimer’s. The last few years of his life were a roller coaster. There were hospital stays and care facilities; anger and emptiness. The journey of Alzheimer’s is learning to grieve the living.

Although my father in law died first of Alzheimer’s, many years before he began to show signs my mother in law’s memory was disappearing.

My husband and I will celebrate our twentieth anniversary this fall, and for over 15 years of that my mother in law has been fading. Her mother had dementia, and she resigned herself to the same fate. She has never been responsible for caring for my kids. My girls have never gone to grandma’s for the weekend.

She is still one of my favorite people in the world.

I call my mother in law Winnie the Pooh. She has a heart of gold but a head full of fluff. She is never cranky, always happy. (I called my Father in Law Eyeore, because he was quite the opposite.)

While some in our family have understandably struggled with the reality of both Grandma and Grandpa radically mentally impaired, my youngest–our precious little peanut–knows no different and loves her world. She loved her grandpa.

She loves her grandma.

This week was Grandparents Day at my daughter’s school and I knew Ryan would love to have Grandma there. Her school is 20 minutes away, and the memory care facility where my mother in law lives is 40 minutes past that. That meant quite a bit of driving.

As Grandma and I were walking out the door of her home to pile in the car I asked her, “Do you know who I am?”

No. She did not.

By the time we reached the first stoplight two blocks away, she asked me half a dozen times who I was. The conversation usually goes like this…

Me: I am a married to one of your sons. Who are your sons?

MIL: Let’s see. (Starting to count on her fingers…) Bernie, Carl, Everett.

On occasion she’ll add someone else to the list, her husband or son in law.

Me: Now which one would have been smart enough to marry me?

She laughs at that every. single. time.

Me: I am married to your son Carl. Usually if you say it together, you can remember my name. Carl and _______________…

MIL: Robin.

It is an interesting conversation. Or not. But it is my life.

For the whole drive we chat about the scenery and philosophy; family and the past. It is often the same conversation on repeat. I believe the fact that she is my mother in law and not my mom makes it easier for me to enjoy her as she is. There is not as much loss to bear.

We get the walker out and toddle to the group meeting.

I get Grandma a snack she can eat with her hands. She lost the ability to effectively use silverware a while ago, but she loves a sweet treat.

Then we headed to the classroom.

Ryan was so happy. Daddy had to come along for the fun.

San Luis Classical Academy, my daughter’s school, is a beautiful part of this season of life. Ryan is on campus two days a week and homeschooled three days a week. I am hauntingly optimistic we will make tremendous progress this year.

Ryan did her “recitation” of Wynken, Blynken and Nod.

When your child can’t talk, you must improvise and prioritize. I decided that for this recitation, being comfortable in front of the class was the goal.

Look at that face. Today was a winner.

After recitations were art projects and show and tell times with Grandma.

Keep in mind that at the very moment my these pictures were taken my Mother In Law had absolutely no idea where she was or who she was talking to. None.

THIS IS GRACE.

THIS IS LOVE.

THIS IS BEAUTIFUL.

My daughter who can’t talk and my Mother in Law who can’t remember have a relationship that looks like this. And they both mean it with all their hearts.

I love this part of the Message version of the third chapter of Ecclesiastes:

A right time to cry and another to laugh, A right time to lament and another to cheer.

This is my life right now…a crazy, mixed up jumble of lamenting and crying while also laughing and cheering.

It is my demented Oreo of a life, and while I may not have chosen it, I do–in fact–love it.

To The Lady Behind Me at Target

Robin Apraxia, Special Needs Families, Uncategorized August 11, 2015

I knew it was going to be a long day. I warned my Facebook friends to that effect.

Ryan, my precious little peanut, has a canker sore the size of Texas on her tongue. She chewed the dickens out of her mouth after having a cavity filled. And now the bugger hurts. Bad.

First thing this morning, she was (what my mother would call) caterwauling. Howling and sad, she slammed doors and threw fits.

This is entirely out of character for her.

Add to that, sometime in the last few months she decided she wouldn’t be a good sport about taking medicine. Apparently, roughly 37,000 pleasant doses was her limit. (After one particular surgery she needed medicine 22 times each day.)

So it was a necessary battle to give her something for the pain and rinse her mouth out in an attempt to help her sore heal. You see, next week she and I are boarding a plane to fly across the country to meet with a speech therapist who specializes in oral motor placement therapy. We are investing time and money on the chance someday she might be able to talk, and a wounded mouth is something we desperately don’t need.

For special needs families there is often a tension. The risk of hope is the fear of disappointment. The dreams I have for my daughter make me incredibly vulnerable. That insecurity can follow me around, creating its own place in my world. Today, you stepped into that space, uninvited.

So my daughter poked your bread. Was it so important that you needed to correct her? We were checking out, almost through our shopping adventure. It was Target for goodness sakes, not Mr. Holme’s Bakehouse.

Although my response of, “The next time a friend of yours talks about the difficulty of parenting kids with special needs, I want you to remember how important your bread was to you that day at Target,” was not my finest moment, it was actually proof that I have grown.

Truly, it’s only because Jesus lives that your bread didn’t look like this:

That talk about fits of rage in Galatians? It is aimed at me. And through the grace of God I struggle much less than I used to, yet I still am not perfect. Telling my daughter to stop poking your bread almost made me forget I don’t like to lose my temper.

Now…I am not saying it is good behavior for a child to poke a loaf of bread, but telling someone else’s child what to do is to enter into sacred space. In our world there are many people allowed in that place; staff at school, friends and family, people at church. I don’t believe your loaf of bread gave you that right, with my daughter.

What should you have done? I am so glad you asked.

You could have let it go. You’re a mom. You’ve heard the song. It’s good advice. The truth is I am a fairly strict mother. While I was busy swiping my card to pay and didn’t see the infraction, I certainly wouldn’t have let it continue once I noticed, had you just given me the chance. The statistical odds of Ryan having poked your bread more than once or twice without me noticing are slim…In all likelihood the bread was going to survive.
You could have moved the bread. Problem solved. Move it away from the curious finger of my daughter without bossing around someone else’s child.
You could have distracted her. You say you take care of special needs kids? Then certainly you have learned the art of distractions. Sometimes a pleasant, “How are you?” can interrupt harmless, inconvenient behavior.

There were many choices, but your choice made one thing clear: Your bread was more important to you than my daughter’s feelings or camaraderie with another mom. Seriously, I hope the sandwich is good.

To be clear, I am not a helicopter mother who protects my kids from everything, and ignores the world around me for fear of interfering. That’s not my style at all.

I have stepped in front of stranger’s kids when they were clearly misbehaving and about to run in the street. Once, at the community pool, I heard a mom say, “It’s time to go.” And a boy yell, “No!”

Then that boy, with the body language of naughtiness emanating, walked into the middle of the kiddy pool.

I had my sundress on and was gathering the towels and snacks of my girls when I turned to see his mother. She was in a wheelchair. Without a moment’s hesitation I asked, “Would you like me to go get him?”

“Would you?” She pleaded. I said I’d be happy to.

I walked into the pool, grabbed his hand and returned him to his grateful mother. Solidarity, people. But here’s the gig: I would never interfere with someone else’s child for the sake of my own comfort. Never.

Safety first, always. I don’t even think–it just happens. And if a mom clearly needs a helping hand I can give? No problem. I am happy to have her back.

But to interfere with parenting without allowing the mother time to speak, over something so trivial, is yucky. Your bread was clearly more important to you than I hope any loaf of bread ever will be to me.

I hope tomorrow is a better day for both of us.

The Gap Widens

Robin Apraxia, Grace, Growth, Homeschool, Special Needs Families June 24, 2015Apraxia, enduring, Moments, The Gap

Parenting is not for the faint of heart. Parenting a child with special needs is that times a gazillion.

My precious little peanut lights my life. She stretches the boundaries of my heart and tugs at the capacity of my mind. She puts a mirror smack dab in front of my laziness for me to face, whether I want to or not.

I am a much better human being because of this journey.

But it isn’t easy.

She has rounded past her first decade and still cannot talk. She has a few words but they are hard work. She has sounds and a few signs, and ideas and stories and things to get across. (Mostly so you’ll do things her way, but I can’t criticize that.)

We’ve had some beautiful moments of learning. There have been many times when things looked and felt exactly like my heart imagines homeschooling could be for her.

And many, many dry, disorganized, exhausted moments in between.

But the number 10 is keeping me up at night.

It feels so old.

Have we missed the chance to get it right? To help her all we can?

I had my heart set on taking her to a speech clinic for Apraxic kids in Michigan this summer. But the Michigan therapist says Ryan is not yet ready for her. Ten years later, and we are still at the beginning.

Go to Connecticut, she says. Get more help with Oral Motor Placement Therapy.

Okay. I will.

On the phone I chat with the specialist in Connecticut who tells me, “What you see in the body, you see in the mouth.”

~~Oh crap.~~ Good to know.

I have always placed large motor skills at the bottom of the priority list.

We can only ever have one number one priority at any given moment. Physical therapy has not been my number one for her since she started walking at 2 1/2. But I didn’t know that what you see in the body you see in the mouth.

Gotta be honest, that is not good news.

Because of Ryan’s diagnosis, she doesn’t qualify for any government help. Tri-Counties Regional Center has nothing to offer her. We pulled her out of public school because it wasn’t working. I guess I could figure out services through the district but because her private school is in the town of a different school district than the one she used to attend, I’d have to start over. Yuck.

So we are shifting our focus in the weeks leading up to Connecticut. In that spirit we joined a hike with moms and kids from Ryan’s school. (She goes to a hybrid school where she is on campus two days a week and homeschooled three days a week.)

We all started at the exact same time.

Soon, we were by ourselves.

Not too long into it she wet her pants. (HOW DID I FORGET TO MAKE SURE SHE WENT POTTY BEFORE WE LEFT? I am not an amateur, for goodness sakes.)

It would have been so. much. easier. to turn around and go back. We could have waited for everyone else at the beginning. (My older daughter and brother in law were with the group.)

But I am terrified that if I am willing to turn back, I put at risk every good thing that lies ahead of her.

So we plowed forward.

We saw cows. In the middle of the path.

It was hard for her. Hard for both of us. I am not a nature girl.

Turning back could not be an option. I cheered and waited and promised dry clothes at the car. I told her forward was the only direction we could go.

As the gap between us and them kept getting bigger.

I fight the thoughts that creep in: What if this is the rest of her life? A series of experiences where the gap between us and them grows until we are totally alone?

It is in these moments that my mantra saves my life: Head up, look to the Lord. Head down, get to work.

I cannot look around. Comparing us to others will certainly kill my dreams. The only thing that makes sense is to put one foot in front of the other.

On this day, that meant finishing the hike.

In August, it means going to Connecticut.

In September it means totally reorganizing my homeschool days because what you see in the body, you see in the mouth.

And on most days between now and then it means repeating over and over: Head up, look to the Lord. Head down, get to work.