5 Dinner Guests

Robin Growth, Special Needs Families, Uncategorized November 13, 2015Bible Study, everyday, imperfection, Moments, paying attention

My friend Kelly from Mrs. Disciple has a Friday 5 link up each week. AAaaaanndddd each week I tell myself I am going to “DO THIS THING!” Then each week I don’t.

Maybe this time I will.

5 Dinner Guests is SUCH an intriguing concept. In fact, my hubby and I already discussed ours this morning over coffee in the hot tub. (A favorite morning activity…soaking, chatting, watching the night sky disappear in the daylight.)

Here goes:

Clearly I like words. If this is insight into my life, I am most definitely in a season longing for growth and learning, and this list of 5 proves it.

1.) Antonin Scalia. My father was a Superior Court Judge who served as president of the California Judge’s Association. His father was also a lawyer who clerked for Earl Warren. If Grandpa Hal had not died at 43, there is every likelihood he would have gone with Earl Warren to clerk for him in the Supreme Court.

It is in my blood.

Mr. Scalia is brilliant. His judicial acumen and ability to write decisions that illuminate application for the common man are inspiring. My brain might hurt after, and I would likely have to write things down to look up later, but it would be fascinating.

2.) Stanley Greenspan. This one’s tough. He died in 2010, but before his death he was a pioneer in brain development and special needs diagnosis and treatment. His work on “floor time” was revolutionary.

“Floortime meets children where they are and builds upon their strengths and abilities through creating a warm relationship and interacting. It challenges them to go further and to develop who they are rather than what their diagnosis says.”stanleygreenspan.com

That makes me cry.

The ability to collaborate with, learn from and listen to a man of his expertise would be life changing for my daughter.

3.) Hyrum Smith. He is the founder of the Franklin Quest Company and author of the book The Ten Natural Laws of Successful Time & Life Management. He is one of the most powerful speakers I have ever seen, and his book is life changing.

“Natural laws are fundamental patterns of nature and life that human experience and testing have shown to be valid. They describe things as they really are, as opposed to how we think they are or how we wish they were.” page 12

Well said. Walking through his process of figuring out my governing values was brutally insightful. Putting priorities in order is a skill that I have carried into many, many other situations.

You can only ever have one #1 priority at any given moment. Accepting that is freeing.

4.) Albert Mohler. (Could also be John MacArthur…either/or.) Mohler is a theologian and apologist I deeply respect. His reverence for the Lord inspires me.

Growing in my understanding and application of God’s word is of the most importance to me. I LOVE to fill my brain with Scripture. Talking about how to apply it and live life helping others to do the same is something that would keep my attention raptured for hours and hours and hours.

What a joy that would be.

5.) Lysa Terkeurst. “We have to put our hearts and minds in places where wisdom gathers, not scatters.” Exactly.

Lysa is married to a business owner, is a mom, started a ministry, writes and speaks. She is passionate about applying Biblical truth to life.

She does what I do times a million, with far greater excellence.

She is my hero.

She is funny. She is moving. She is insightful.

And most importantly she is an example.

Both times I went to the Proverbs 31 Conference SHE SPEAKS, I was gobsmacked by how humble and edifying the entire team was. I had never seen women treat each other that way before, and I wanted more of it.

When I read this blog of hers, I was a devoted fan forever.

I would be a better person for interacting with those 5… What about you? Who are YOUR 5 DINNER GUESTS?

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.

Great Moments

Robin Growth, Homeschool, Moments, Special Needs Families June 16, 2015education, everyday, imperfection, Moments, parenting, paying attention, Ryan, Special Needs

I love summer. I love the changing of seasons; not seasons of nature but seasons of life. The coming of summer and the end of school inherently provide a time to regroup.

I often need time to regroup.

Here is the truth of my life: I think I am getting better at it.

I am not perfect. Obviously. But I am also not a perfectionist, I am a pragmatist. What I am constantly trying to move toward is a life that works. For me that means my calendar matches my priorities. In quantity of time my family comes first, but in priority of time my faith comes first.

This season is working for me because, as it turns out, I love to learn. In church and Bible Study I am in a fruitful season of learning God’s word and how it applies to life. In parenting, my girls are in a fantastic school–on campus a few days a weeks and at home the others. Reagan is completely in charge of her own learning, and Ryan is homeschooled a few days a week.

After four years, I may be getting the hang of it. I actually finished the school year with momentum…and I am excited about the coming year.

It’s crazy, I know. I was actually…organized.

I want to push pause on a moment. In one of our homeschool days this spring, there was a breakthrough.

This is an activity we have done many, many times. Baking soda, vinegar, water, corn starch and food coloring have provided hours of entertaining engagement. This day we were using it as our fine motor activity. All of the squeezing and pinching making her little hands stronger on our road to learn to write.

Mostly I sat back and watched, letting her explore and combine.

The breakthrough came…for the first time, ever, Ryan did not combine all the colors into one big brownish-greyish gloomy mess.

Obviously she is still a bit messy. ($3 clear shower curtains get a lot of use as craft-table covers in our home.) But she was more careful than I have ever seen her.

This summer we want to continue to strengthen her foundational skills so that we can embrace the curriculum more thoroughly this fall. We intend to read more and exercise more. In August she and I will head to Connecticut to get a thorough evaluation and several sessions with an expert in Oral Motor Placement Therapy. It is our attempt to progress in teaching her to talk.

We are not ready to give up hope.

Meanwhile, we will do all we can do to enjoy this season, these moments, this child.

“And God looked at all He had made, and indeed it was very good.”

Genesis 1:31

Summer Adventures

Robin Moments, Special Needs Families, Uncategorized May 4, 2015adventures, imperfect, Ryan, Sea World, summer

My kids.

They are so precious and they are growing so fast.

Last summer my youngest and I went on an adventure. A friend (who I connected more with on Facebook than I did in high school) was getting married. She was elated…after years of praying and being faithful her day was coming. I wanted to be there.

My hubby? Not so much. And our middle was off to church camp the day AFTER the wedding so the 7 hour journey to get her on the bus the next morning seemed exhausting to think about, ESPECIALLY for a guy who had no desire to be social.

So my peanut and I hopped on the road together…

She was an incredible traveler, never complaining in the 7 hours it took us to get to Anaheim. (Which should be a 4 hour trip.) We stopped at McDonald’s, took a deep breath, and hopped back on the road. The traffic was intense. God and I chatted as car after car speeding recklessly by made me face the fact that I have some issues with fear…that’s another discussion.

By the time we reached San Diego and our hotel–almost ten hours after we began–I was so relieved and tired I pulled into the valet parking without even asking how much it was. (Good thing. Not cheap.)

Ryan and I snuggled in our glorious hotel bed and slept soundly, EXCITED about Sea World the next day.

She cracks me up. She is feisty and determined. She loves to laugh.

Once we got to Sea World, she became possessor of the map.

Remeinder…she can’t talk. She doesn’t yet read. But doggone it if she couldn’t navigate our way through Sea World following that map, perhaps even better than I could.

This was a unique experience for me. As a mom of three kids, spending precious time, away from home, with just one little person was a gift. My son is now grown and on his own. My girls are so different. Reagan, my middle, is incredibly bright and transitioning into a mature, free thinking, not-quite-a-kid anymore. Our “easy” one, she is diligent and academic but she tends toward a bit of melancholy…

Ryan, my youngest, has special needs. She can’t talk but has some words, some signs, and finds many methods of making a point. She can’t yet read and we are painstakingly learning what numbers are and what value they have. Her run, really isn’t. She smiles often. She spreads joy, but rush is not in her. She just can’t.

So. This. I could follow her, at her speed, to her appointed point on the map and let her enjoy.

She wanted to go here:

Oh my.

First, I dislike heights. Second, there is NO WAY I can send her up by herself. It is not a reality in our life. So, because this was a YES journey all about her, up we went.

She looked at me, pointed between her legs and I had to say, “Sorry, kid, keep going.” Up was really the only option, but it was hard work.

Let’s just be frank with one another, I am not in shape. My thighs are mushy and my belly does not look great over the top of my jeans. I am fighting not to have to get larger clothes, but the fight is not going my way. This ~~stupid~~ structure at an amusement park was like a long, long day at the gym.

I pulled my way up, up, up the rope net and climbed through the tunnel. Once at the top, a father was also entering the landing from a different direction. He gasped, “They should warn you about this thing. My back hurts, my knees hurt and I have broken a sweat.” He was a dozen years younger than I was, tanned and fit. I was not sympathetic.

“Your wife is clearly much smarter than I am,” was all I could mutter.

We climbed and crawled until we got back on solid ground, and although I knew she had wet her pants, I didn’t care. Changing her clothes was a distant second in priority because…this:

I love a character photo. After, I bought her a new shirt, we changed and went on our way.

We ate ice cream, watched penguins, cheered the dolphins, walked, walked and walked some more.

I wouldn’t trade this sticky, messy, hard world of mine for anything. Days like this illustrate in vibrant colors the unique beauty of my preciously imperfect life.

What is Normal?

Robin Homeschool, Moments, Special Needs Families, Uncategorized November 16, 2014

I admit that there are moments when doubt and fear creep into my head and heart about my daughter’s future.

Will she be normal?

Ryan is the only one in the world with her particular chromosomal abnormality. Apparently, I have bad genes. Great.

She is almost ten and can’t talk. Years and years of speech therapy, but still no ability to form a sentence. She can utter few words. She can use a few signs.

As a family we function very well. We guess and decipher and encourage and learn and endure some melt downs as her world and her thoughts expand. But every once in a while I am able to step outside myself and feel how abnormal my normal is.

Sure, she went to four years of kindergarten. Not normal, but absolutely the right thing for her.

No, she is not in Special Education. She obviously qualifies, but my hubby and I don’t believe the system would invest in her; it would merely endure her.

All this is not normal. We are not a part of the typical crowd, we are not a part of the special ed crowd. We don’t fit in.

But, save a few moments filled with ridiculous and useless panic, we enjoy the journey…

Years ago my family began a tradition of going to Disneyland for Halloween.

In my opinion, the Christian Community–of which I am a proud and vocal member–is nutty about Halloween. The whole gather on the 31st of October, in costume, to collect candy, and call it any other name you want and declare you don’t celebrate Halloween is just not for me. And, truthfully, the small town I grew up in had many streets with no lights and obnoxious teenagers that would drive around and smash pumpkins all evening, so my initial thoughts about traditional Halloween are not fabulous. I wanted/needed/searched for a better third option, and Disney was it.

This year, unbeknownst to me, my hubby planned an entire trip to Disneyworld.

Two weeks.

Five different resorts.

Unbelievable.

We packed up and moved our tradition to Florida.

As is the normal routine, one of our first stops the evening we arrive is Downtown Disney to choose a costume. My teen was willing to dress up, but there really was not a great costume for her. (Note to self, a bit of planning and preparation would have been helpful.) Most of the searching was done by my peanut.

I lobbied heavily for this:

But as precious as she was in that costume, and as much as she loved it, when we got into the dressing room she looked at me pleadingly, made her hand into a fist and tapped the wood bench with, “Knock, knock, knock, knock, knock…” which is her way of asking for FROZEN. (Cue the sound track: “Elsa? Do you want to build a snowman?”)

So my daughter, with unlimited options before her, wanted to be a princess from FROZEN for Halloween this year.

It doesn’t get any more “normal” than that.