Posted by: Leigh Reynolds | February 2, 2015

All the World’s a Stage

AllWorldsStageI remember when Patrick and I were first dating, I went to see him in “As You Like It”. I must have really liked this guy, because it was Shakespeare and I never understood Shakespeare. Oh, my high school teacher’s tried, but I faked my way through it. Now, here I was, on the front row of this artsy, Gorilla Theatre production of it in a coffee house. A really small space. I couldn’t nap in the back row, I was practically on the stage. I had to pay attention, pretend I understood…

But as the play began, and he entered the stage (and I use ‘stage’ loosely – it was the floor right in front of me), I was drawn in. Not because he was cute (which he was and is), but because he was good. Really good. For the first time in my life, I understood Shakespeare and I was mesmerized by this wonderful play and the tale it told.

Somewhere along the way, I completely forgot that I was watching my new boyfriend act. Because he wasn’t acting, he had become the character, Orlando. I’ll never forget it.

Some time later I had my first dramatic role and I learned a lot. When you are learning a part for a play, at first it is totally foreign. Someone else’s words, on a bound book, pages crisp and new. You crack it open and try to make sense of it. You dog-ear the pages on your scenes, highlight your lines, and wear in the book. Then the director starts to add in the blocking. You are just learning the lines, and now you have to remember when to cross left, when to come upstage or down, sit or stand. Still with the book in your hands, blocking notes written in the margins, you stumble through. Sometimes literally stumble.

Eventually, you need to look at the book less. Maybe you still carry it because you don’t trust yourself to go it alone. Or you know the lines, but can’t remember the blocking. Finally you go off-book, but you mess up a scene, or have to call out, “line!” and someone with the script tells you what to say, how to move, and helps get you back on track.

Somewhere along the way, if you are playing the right part, one you were meant to play, you stop memorizing and recalling, you stop trying and acting and you just are. Then the people in the audience don’t see you, the actor, they see the one you are trying to be.

Today I was practicing a song for church, Let Them See You In Me. It talks about stripping away everything else to just let Jesus come through…

Let them see You in me
Let them hear You when I speak
Let them feel You when I sing
Let them see You in me…

With every breath I breathe, I sing a simple melody
But I pray they’ll hear more than a song

My mind was drawn back to that night at the Gorilla Theatre. How all I saw was Orlando. How Patrick faded away. I thought about my first dramatic part and how my mother told me she forgot it was me. I thought about the process of learning a role and becoming the character.

Then I thought about who I am trying to be. Not on stage, but in life.

The lines I am learning come from the greatest book ever written, and they’re already highlighted in the red letters. The blocking I am trying to walk is being guided by the one who directs the universe, the maker of heaven and earth. Often I trip up, forget the lines, mess up the scene, have to call for help and go back to the script. I try and read it every day because this story is never-ending, the Words speak to me uniquely each time I read it.  The director adds you in to a new scene oh, so often. But Jesus always meets me there. Lovingly guiding me to who he made me to be, calming my fear, lighting my path and directing my steps.

I used to want the starring role, the lead part, the top billing. I craved the applause and attention. But I am learning that role is so empty and flat. Playing that part is a poor performance in a weak script. I want the creator of heaven and earth, the one who placed the moon and the stars in the sky, and who has plans to give me hope and a future, to direct this play and be the star.

I want to lose myself in Him. His will. His words. His way. I want people to forget about me and see Him

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Posted by: Leigh Reynolds | December 24, 2014

It IS a Wonderful Life

I recently signed a new contract with a client that would mean, temporarily, some extra income for us. Sure, it’d be more work too, but I can manage that pace for a few months and there was plenty we’d like to do with that money – pay off some debt, fix a bathroom that is in disrepair, put some money in savings for a trip to Disney in 2016. I had the money spent long before the ink dried on the contract.

It has also offered a less stressful Christmas with no debt for a single gift. Now, the day before Christmas Eve, we have just a few things to pick up. I had a moderately heavy ‘to do list’ and a sharp plan to get it all done so that tomorrow would be a little less hectic than usual. One of the items on the list was to take 2 dozen cinnamon rolls to Wil’s preschool for the teachers. We had it all set – I’d pick them up from Patrick’s work on my way to take Wil. Easy-peasy. But when I called to tell him I was on my way he told me they weren’t done. A delayed delivery truck. I’d have to drop off Wil, wait a bit, then pick up the cinnamon rolls and go back across town. Frustrating, but I’d make it work.

I ran an errand, killing time. About ready to head over to pick the rolls up, Patrick calls to tell me they forgot to put the them in. The ovens are now full of lunch orders. I’d already told the teachers I’d be back with them, so if I wanted the teachers to get them today, I’d have to pick them up and cook them myself. There goes my time for rolling through the ‘to do list’, and the treat for the teachers that was supposed to be simple, just got hard. I was headed to Grandma’s to pick them up. Patrick calls again. His car just died. Dead. In the middle of the off-ramp. Not good…

I was already a little upset about the messed up morning and cinnamon rolls, I wanted to be downright pissed about the car. I started thinking about our plans for that extra money and how it would now, most likely, have to be used on a car. But then I thought about my dad and what he’d say… “Well, what are you going to do about it darlin’? That’s just how life goes some times. Be thankful you have a little extra money to get a new car. It’d be a lot worse if you didn’t…” Even just in my head, my dad was giving me the tough love I needed but really didn’t want.

Then I thought about what Patrick always says…”Praise the Lord! In all things, praise the Lord!” Now, sometimes he says it in a moment of blessed sincerity. Often he says it to get my goat and make me smile a begrudging smile.

I didn’t want to listen to either of them. I could feel the beginnings of a pity party brewing inside. Then it happened. I just decided not to go there. I listened to these voices in my head and chose something better. I chose to be thankful in all things. Even a messed up morning and a dead car 2 days before Christmas.

We got the car towed, I rescheduled the cinnamon rolls for tomorrow, and we all got ready to do some last minute shopping – a fun outing together to some of our favorite stores. But then it took the kids forever to get ready. One couldn’t find a shoe. The other refused to eat. We wanted to leave by 2, be home for dinner before 6pm. We rolled out of the driveway at almost 4pm. Now we’d face busier stores, get stuck in traffic and be lucky to make it home for dinner. But I was done working for the week, we were out and about, and so I took a deep breath and chose joy again.

We got through our shopping and were headed home. A little later than originally planned, but still in time for the dinner I had planned at home. Except when we went to load the car with our treasures, it was dead. The kids had headed out ahead of us and turned on the car just enough to kill the battery. Seriously. Well, I figured bad things come in 3’s so I must be done, right?

A good friend drove out, jumped the car and we were headed home – but it was after 7. By the time I got home and cooked, we wouldn’t be eating until 8pm, so we decided to grab a bite out. Chipotle sounded great, so we swung by… the line was out the door. Taco Bell it is. A bummer, but after today, a small matter. I just wanted to get home. I would still have time to knock a few things off the list after I got Wil to bed.

In the drive thru, I reach for my purse to pay for our food… No purse. No purse anywhere. We get out of the car, dig through it all, then it hits me… I had put the purse under the cart so Wil could sit in it. I didn’t remember taking it out. I was sure I’d left my purse under the cart, outside the door of World Market, when I lifted Wil to carry him to the car. Panic started to set it.

Surely it was turned in and this would be a feel-good tale. I call the store – they look in the carts, asked around, but no purse was turned in. Ok God, this is getting harder. Praise the Lord at all times?! Really?!! My purse, ID, all my cash, credit cards, over $100 in gift cards… all gone 2 days before Christmas. You want me to be glad in this?!

I really wanted to be flaming mad. There was a time I would have screamed, cussed, cried. But the kids were watching. I’d worked so hard to hold it together today. I couldn’t lose it now.

I drop Patrick, Tess and Wil at home and – against the odds – Jake and I head back to Westport to search for the purse. Maybe someone grabbed the cash and dropped it in a dumpster? Maybe it was still in the cart in the parking lot.

On the way I talked it through. Hard at first, I reminded myself of all I’d already reminded myself of today. I thought, maybe whoever got it was really struggling and needed the cash. I prayed that it would be a blessing to them. I won’t be able to give Patrick and the kids the gift cards, but there will still be plenty under the tree. More than we need or deserve. I have my phone; usually in my purse, I had it in my pocket for once. What a blessing. Regardless of what I lost today, I still have so much more than so many. Tomorrow morning the sun will rise and though I’ll spend the morning closing accounts and ensuring my identity wasn’t stolen, I’ll be with my family, in my warm house, surrounded by those I love, celebrating the most important birthday there ever was. Praise the Lord. In all things, praise Him. It came hard, but it came.

We look in the carts, we check the nearby trash cans, Jake heads over to the dumpster and I go to make sure the manager has my info on the off chance it turns up. “I have it,” she says… then I realize, she doesn’t mean my info, she means my purse. It had been turned in, totally in tact.

I hugged her. Twice.

Jake and I headed home, feeling happy and blessed.

Now, I know this will sound crazy, but there is a part of me that thinks it is precisely because I was OK that it was gone that it was there. God lives outside the restrictions of time and space. It’s possible.

Either way, as I sit here now, watching “It’s A Wonderful Life” while my purse hangs on the doorknob, I know that it is indeed a wonderful life. And it would be even if my purse was gone, because I chose to praise the Lord in all things. In a strange way, I am so thankful this day happened. I grew in my resolve to choose joy and I strengthened my joy-choosing muscle. My kids were there to see it and maybe tuck that away in their toolkit for later. And just 36 hours before Christmas, I was reminded that all the stuff is just stuff and my heart was turned toward others who could use my compassion.

So I wish you a Merry Christmas. May you unwrap joy, every day.

 

 

Posted by: Leigh Reynolds | November 17, 2014

“What Are You Doing Here?”

We finished a praise song and Tiger, our pastor, stood as he usually does, but didn’t say a word. He just let it fall into the quiet.

You could tell that some were wondering what was next, wondering if someone missed something. Others shifted uncomfortably, shuffling their bulletin. There were a few coughs, then a few small laughs – the kind that come when something is slightly uncomfortable… I leaned in. I knew there was a point about to be made and I wanted to hear what God had to tell me through this man standing before me, smiling in the uncomfortable quiet.

I have learned that God speaks through sermons; often delivering a very personal message that is independent and unique for many in the same room. We hear the same words, but can each take away something quite different, directed just for one. I am not sure what grabbed others in the room, but I know the part of the message that was for me.

What AreYouDoingHere“What are you doing here?”

In this sermon series, we’ve been walking along with Elijah for a spell. He was a great friend of God who had been fighting the good fight for a while, doing as the Lord commanded, standing up for what is right, fighting the righteous battles and seeing first hand God’s glory and power. But by he time we get to 1 Kings, chapter 19, Elijah is tired. Tired of standing up for God, worn out from doing the right thing, weary from fighting the good fight and feeling so alone. He runs. He gives up. He lies down and succumbs to his weariness.

An angel came and provided food and drink to help him regain his strength and prepare for the next leg of the journey. Renewed but still weary, Elijah went on to a place he knew God had been present in a mighty way – Mt Sinai (referred to here as Horeb – and I only know that because Tiger told us.) Once there he faces a powerful wind, an earthquake, and a fire – but God is not present in any of these, as Elijah may have suspected.

But after the fire comes a gentle whisper. “What are you doing here?”

Elijah shares his weariness, his fear and a little bit of his oh-woe-is-me pity party.

God basically tells him to go back the way he came and get some help.  That He already has leaders picked out to help Elijah keep up the good fight for His kingdom.

“So how does this Old Testament story relate to you, Leigh?” you may be asking.

Well, I have been slowly slipping into a pretty deep funk for the last few weeks. More than once (okay, daily) I have had a tear-filled chat with God, telling Him, “Hey, I’ve been fighting the good fight, haven’t I? When can a girl catch a break? I’m tired. I’m weary. I’m done…” I am not sure how I slipped so far of late. I am not entirely sure why the trials of wife, autism mom, teenager and tween mom, business owner and more have grabbed a hold of me so. But they have. And I have let them carry me to a place of much saddness. I have been calling out for God and waiting for my lightening bolt, an earthquake, a firestorm to sweep in and fix it all.

I have been so focused on the tough parts that I have been missing the blessings. I have been so caught up in worrying about tomorrow and next year and beyond that I have been missing what’s happening today. I have been missing it when God sends an angel to restore my strength. And I have been missing all the ways God has been showing me that He is right there, just as he always has been. I had forgotten all the times and all the ways God has restored me, held me, made a way. I have been crying out for a big bang and I have been missing the whisper.

In the little things, like my car needed new filters and new tires – oh woe-is-me. But just the week before we got a totally random and unexpected refund check for an over-paid insurance premium from 2011; more than enough to cover the tires. That was God whispering, “I am here. I am with you.”

In the big things, like Wil has autism and that’s really, really hard – oh-woe-is-me. But I have this amazing church family determined to be in this with us and I have a job/company that allows me to make enough to support my family while having the flexibility to work from home, make my own schedule, be there when all my kids need me, even if it is just for a ride to school when my oldest misses the bus, to join my middle one on a field trip (because she still wants me there), or give Wil the time he needs in the morning to adjust to the fact that it is now winter and that means a different coat. (And yes, that’s a thing with autism – he has difficulty adjusting to a change as simple as that.) Despite that run-on sentence, God has been whispering, “I know it is hard; I am with you. I have helpers already picked out. I have bigger plans; I am making a way.”

I have been depressed and focused on the wrong things. Listening to the wrong whisper – the one from the enemy that says, “You will never make it. You’re a bad mom. Your company is going nowhere, why are you wasting your time? You are not doing enough for Wil, his future will a mess because you can’t hack it.” I have been leaning into all the wrong things, listening to the wrong voices. And that means I have been leaning away from the blessings, missing God’s whisper of grace and peace and strength.

So God asked me, “What are you doing here? This isn’t the place I have for you. These are not the plans I have for you. Go back the way you came. Remember all the times I have been there? Recall all the ways I have sustained you. Lean into Me and I will carry you, just as I always have. I know the way and I know where you are going. Trust me.”

God has brought me to a quiet place. While I am not in a cave, I do spend most of my days in my basement office, alone. Life is very different than it was a few years ago. But God is calling me to listen to His whisper. There is great solace there. There is a lot to learn and know and so many ways to grow there, if I can trust and listen to His still, small voice.

Then, when He calls me out into the storm, I will know I am not alone. I will still hear His voice on the wind and I will not be afraid.

ForIKnowthePlansIf you find yourself in the wrong place, the sad place, the oh-woe-is-me place, ask yourself “What are you doing here?” Maybe God is whispering to you in His still, small voice as well. Listen and He will tell you the way to go.

Posted by: Leigh Reynolds | July 22, 2014

I am, He is

People often ask how I am doing, and I usually answer “fine” or “pretty good”, occasionally “blessed!” Friends who know about Wil and his autism often ask how Wil is doing, and I typically say, “He is awesome. Amazing. So great.”  I answer this way because, for the most part, I am and he is.

But the real answer is never truly that simple. There is this life with autism that lies underneath. The worry. The reality.

When Wil was diagnosed, life moved into a new place. A place of delicate balance. Life became therapy and therapy became a central part of life. It’s not just breakfast, it is time to work on life-skills, practice communication, use his desire to be fed as a motivator for language. That is how each day begins and how we go through each day. Each moment a chance for therapy, an opportunity to either gain some ground or – if we don’t take full advantage – possibly lose it.

Every day I try and focus in the moment. When I ask him what he wants for breakfast, he doesn’t answer, he leads my hand to the box of Nutrigrain bars, but tomorrow he might. When I ask him if he wants to play outside, he doesn’t answer, instead he takes my hand and leads me to the door, but tomorrow he might. When I pick him up after school, I smile and ask how his day was. He doesn’t answer, but tomorrow he might.

I soak up his smile. I feel the warmth of his hand in mine. I enjoy the walk to the car and I know he is happy to see me. I am pretty sure he had a good day.

I keep the worry at bay. I hold off the fears. I push it all aside and focus on this moment. With a lot of faith, prayer, focus on how amazingly blessed we are, I get through one day at a time and I am just fine. I have a joy that comes from knowing my life is in God’s hands and so is Wil’s.

But it is all still there. Underneath. Am I doing enough? Will my son ever have expressive language? When and how will we tackle potty training? What about church? Will we be able to work with Wil and the nursery volunteers enough that Wil can go to Mission Friends in a year? What about school? Will we be able to afford the private school we want him to attend? Even if we can afford it, will he be ready? Will other kids accept him and his uniqueness or will he be bullied in a way that dims the light that shines from within? What about later? Will he drive a car? Will he be able to have a job? Will he have friends? Will he be able to take care of himself? Live a full, rich life independently? Will he be OK when his father and I are gone?

I keep these thoughts at bay. I hold them in. I lock it up tight so I can live,  so we can live and love and laugh and enjoy today. So that Wil will know he is surrounded by love and joy and peace. So my other two children will know the same.

Every once in a while, something happens. BoomCrash!AirBag

Like in an unexpected car accident, there is a hard impact you didn’t see coming and the airbag burst open. All of these fears burst forth in a rush and I can’t hold them in. The pressure of them pushes against me. I feel the burn of it against my skin. I try and catch my breathe, but I am suffocating under it. I hit at it and try to hold it back, but there’s no stopping it.

This past weekend it was watching “Sounding the Alarm” put out by Autism Speaks. It is pretty well done. I’d love all of my family, friends, neighbors, teachers and congressmen/women to watch it. It tells a tale that more need to understand, about the rising tide of autism, the lack of services, the confusing journey for families, and the parent’s struggles with feelings of failing.  But for me, it was the impact that made all my fears rush forth. I spent the next two days in tears, off balance, struggling to get back to center.

And I got there – or at least I am getting there. I’ve spent a little more time in  prayer. I spent a little more time walking, breathing, singing praise music. And this week, when someone asked how I was, I was a little more honest. I shared the struggle a bit, because in the sharing, the load is lightened and it helps me breathe again. Like deflating a raft with one of those air-flow stoppers, it is a slow process and you just have to take the time it takes.

A friend of mine has some pretty good advice on the subject as well. “Therefore I tell you, do not worry about your life… Look at the birds of the air… your heavenly Father feeds them. Are you not much more valuable that they? … Do not worry, saying ‘what shall we eat? or drink? or wear?… your Heavenly Father knows what you need… Seek first His kingdom and His righteousness, and all these things will be given to you… do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” You can read more about what He had to say in Matthew, chapter 6, beginning at verse 25.

So, because of God’s great grace and love, through faith and focus, when you ask me tomorrow how I’m doing, I’ll likely say great.

I am, because He is.

 

Posted by: Leigh Reynolds | April 22, 2014

ASD Paradigm Shift

I have worked with various non-profit organizations (NGO’s) for most of my career. Now, as the mother of an amazing son with Autism Spectrum Disorder, I see the whole ecosystem in a different light – at least as it relates to autism.

Autism spectrum disorder (ASD) affects more than one in 68 children (1 in 42 boy and 1 in 189 girls). Autism is considered a spectrum disorder because it affects each person differently. The severity of impact is also very widely varied between all those affected; treatment options are almost as widely diverse and possibly just as hard to decipher and choose from. Once a parent finds a treatment that fits with their parenting style, that their child responds to and gives them their best hope, they are likely to go bankrupt pursuing it as only a small number of therapies, at limited hours, well below recommended levels, are covered by insurance. Each state has different mandates, each policy different restrictions. This requires far too many families to rely on an overburdened, under-funded school system.

Under the Americans with Disabilities Act (the ADA) and Section 504 of the Rehabilitation Act (Section 504), “all elementary and secondary students with disabilities are provided an equal opportunity to participate in, and benefit from, a public education.” But providing all of the therapeutic services a child with autism needs is beyond a reasonable expectation and more than the school system is equipped to handle. It simply is not sufficient.

With nowhere else to turn but their schools, parents all too often become combative with the school system. Wanting the best for their child, they demand more and more be included in the Individual Education Plan (IEP), even if it means suing the school system to get it. This now puts the student in and adversarial position with the teachers and administrators in whose care they are in for up 35+ hours a week, for 13 or more years of their life. And in most cases they still will not receive the full spectrum of therapies and support needed to achieve their highest and best potential.

Something has to change.

Perceptions about Autism are still widely and largely antiquated and damaging. According to the CDC, 46% of children identified with ASD have average to above average intellectual ability, yet far too many are still treated as though they have a severe intellectual disability versus a communication disorder. Parents of children with a more severe form of ASD are still being told that institutionalization is their best option. We still hear comments like “she is 15, but has the mind of a 2-year-old” and “he’s 16, but mentally a toddler.”– Yet teach them to use a computer/communication device and they are revealing their vast intelligence.

 Just ask Carly Fleishmann and Naoki Higashida

Family members are still fighting the uphill battle to explain to the world that their loved one has trouble with eye-contact, speaking and interacting, but they hear everything, understand far more than people believe and behind their unique behaviors is a very intelligent, compassionate and engaged individual.

The system needs to vastly improve. The conversation needs to evolve. We simply must do better by the millions of Americans living with ASD.

There are many good organizations doing tremendous work on behalf of the autism community. Yet progress is still slow, parents are still struggling and people with autism are still deserving of so much more.

I think there has to be a way to change all of this. There must be more and better options to increase funding, impact the ecosystem and change things for the better. The conversation must be more open and how we tackle this issue – and many others – needs to evolve.

Now, I just need to find a way to get it done…

Posted by: Leigh Reynolds | April 15, 2014

My Autism Rant

I write this understanding that I am only a year and a half into this life with autism. I know I have a lot to learn and understand that I’ll likely make many mistakes along the way. I am sure my perspective will evolve and hopefully become more informed as time goes by…

I have also learned that if you are wrong, under-informed or just see something differently than others living their version of life on the spectrum, the autism community will not hesitate to correct you.

But here’s where I am today and here’s my rant.

Just a days after Wil’s second birthday we held the letter that told us what we already knew. What I didn’t fully understand then is how much it did NOT tell us and how much we’d still be trying to figure out and maneuver on our own more than a year later. Likely for a long time. Hopefully not forever.

The first year was a whirlwind, but we made our way. Because Missouri has the First Steps program and we were enrolled already due to Wil’s diagnosed speech delay, we had a team helping us. It meant regular meetings with a  case coordinator, and speech and ABA therapists coming to our home 3-4 times a week. It was a lot to juggle, but it was a safety net. I had someone to call on and a team to ask questions. They worked with the entire family, they helped me find Wil’s special needs pre-school, recommended OT when we noticed Wil’s tip-toe walking, listened to my fears and celebrated the progress… on and on. All this for $33 a month.

Then Wil turned three and it all stopped.

You know the old expression about being up a creek without a paddle? Well, I had been in a boat of sorts – sometimes the wind would pick up and move us quickly, but we had a rudder and a sail to catch the wind and a crew to help adjust the sails to guide our direction. On November 24th, 2013 we were sent out to deep waters – rudder gone, no one to help adjust the sails, sharp winds catching us, propelling Wil and us out into the rough, open seas. At least that’s how it often feels.

We got Wil enrolled in the Early Childhood Education Center through the school district. He started Thanksgiving week 2013. I like them; they have speech, OT, PT, ABA and every other letter of the alphabet you can think might be needed. Wil’s teacher is kind and cares about the children in her care. But she has 10 children in her care and they all have different needs – Downs, autism, severe ADHD, muscular dystrophy, on and on. And that’s just the afternoon session. The numbers and issues double when you add in the morning session.

Under the Americans with Disabilities Act (the ADA) and Section 504 of the Rehabilitation Act (Section 504), “all elementary and secondary students with disabilities are provided an equal opportunity to participate in, and benefit from, a public education.” And that’s great. It is as it should be that all children are afforded an education. But how much can we really expect? Is it playing out as intended?

Yesterday I was in Wil’s classroom for a parent observation. The class was around the smart board and the speech therapist was doing an interactive reading of “The Very Busy Spider” while the room teacher and another sat with and worked with the kids. Wil had his own special helper. I could tell the speech therapist knew what each child needed to work on, as she engaged each of them a little differently. They were doing good work, they had great energy and were focused as much as they could be on each child’s individual needs. But I left knowing it was not enough for Wil.

I can ask for an IEP meeting. (Something no one really teaches you how to properly handle – but that’s for another rant.) I can push for more than this daily group speech and the twice a week, 15 minute 1-on-1 he gets. I can go so far as to demand a lot more, get a lawyer even… but how will these wonderful but over-worked and under-resourced teachers and administrators meet my demands? How will they then balance the needs of the other children in the room – each one a precious child of parents who love them and are fighting for all they can get for their child? How will an antagonistic relationship between the school and his parents help Wil?

I just don’t think this is a great  option.

So how about private speech – the kind of speech Wil’s diagnosing doctor and First Steps team told me he needs? Well, my insurance counts speech and ABA against the $5,000 deductible. So, I can get him in therapy, but I have to be prepared to pay that amount myself first, then cover 20% for the rest of the year. And incur this expense every year. (While I am still paying of the deductible and 100% more for last year and paying for his special needs daycare.)

We do OK. I have a good business, but not a great one. Patrick just got a raise, but not a great one. We have cut things out and trimmed expenses where we can. We are sharpening the pencil and re-examining the budget again, looking into social security for Wil, maybe the state insurance program for kids, clipping coupons, turning off the water and lights, and cutting corners anywhere we can… And we still can’t afford all he needs. Even if I could, I am not sure I know what that is.

I know he needs private speech therapy. Does he need more ABA? If I were to get ABA, how do I find the right therapist – one who isn’t too ‘old school’ and of the thinking that we need to ‘break down what’s wrong in him to build him up the right way.’ Frightening, appalling and painful – but they are out there. I know, I had one in my home once. Once. Our next ABA therapist was wonderful and loving and amazing and kind – but it still was sometimes a little off. A little too comply/reward training – make Wil fit our box rather than understand and connect with him where he is… see his glorious view.

Maybe I look into the Early Start Denver Model; Wil is not too old for this yet. I have heard great things, it sounds appealing, but it is not covered and I am not sure who offers it. Maybe I should buy the book, teach myself and carve out the 20 hours a week needed? I could look into Mendability – the monthly fee is not covered, but the Ted talk was inspiring, the  research seems legit and results appear to be great. Plus is isn’t 40 hours a week, it’s about an hour twice a day. Or maybe I pack up and spend a week at the Autism Treatment Center going through the Son-Rise program. I have heard great things, and it’s only a few thousand dollars a session. It’s supposed to give me all the tools I need to work with Wil at home 20+ hours a week.

I have seen Autism the Musical. I follow Carly Fleishman and Carly’s Voice. I’ve read The Spark and seen Jacob Barnett‘s Tedx Teen Talk. All of these people with autism are unique and magical and brilliant, and all were tapped into and brought out in a way very contrary to ABA, OT and speech. Creatively, with love and brilliance. Maybe I trust my instincts and convert the garage  into our own school for Wil and we make our own way. No idea how I’d make a living that way, but it’s an option.

What about so many others in the same boat? I  mean 1 in 68 children is diagnosed with autism – more really, since this recent study only accounted for children 8 and up.  What about all the families that were already struggling before the autism diagnosis? What about all the people who haven’t worked in non-profit for two decades like me, so know even less about where to turn? Don’t know why and how to be your own, well-informed and best advocate? What about people with even worse insurance in a state that does not mandate coverage for autism? What about people who didn’t get the leg up the First Steps afforded us?

What about the parents who believe it when their doctor says “wait and see, no need to rush to a diagnosis” so they miss out on the critical early years of intervention? What if tomorrow someone else is told their child has one of two options for their future – your basement or a group home – and they believe them?  How do we educate all the people who still think autism means low cognitive skills or retardation – yes, people still think that – and teach acceptance and understanding that not communicating the same does NOT mean mentally deficient? What about…? What if…? How…?

My son is brilliant and unique. He has a future and a purpose. He may never fit the common core check box  – Heck, already he is considered below benchmark on many levels, yet at 3 1/2 he can count to 100, count by 2’s and 10’s, do some math, knows the alphabet (upper and lower), can read many words (likely more than we know), and does puzzles and mazes better than his dad and I do. But if we don’t change the way this autism life works, we could fail him.

And for me, that is just not an option.

I don’t have all the answers – and that’s what keeps me up at night – but I know we need to have the conversation. I know we, as a society, must do better by our family, friends and community members on the spectrum. I believe things need to change for the better. I’m not entirely sure where to start, and I don’t know exactly where we’re going, but I’m determined to get there none the less.

Posted by: Leigh Reynolds | March 25, 2014

Reasonable Expectations

A while ago I had an appointment with Wil’s diagnosing doctor. It was a good visit, he is a great doctor and I appreciate the way he interacts with Wil, how he originally took his time with him to get to a diagnosis and the resources he continues to recommend. It was a great appointment until he said this…

“I think you want me to speak frankly, right? I get a sense that you want me to lay it out there?” I nod; he continues, “OK, good. So there are two ways his future can play out. Maybe he is living in your home, because he may never really function on his own, really, but you give him something to do on the computer, process paperwork, whatever, and he’ll knock it out. He’ll do great. Or the other option is he is living in a group home, has a job with the group, and can function relatively well there…” Then he went on to talk about different therapies and resources that might allow him to achieve these ‘reasonable expectations.’

A while later I attended a special needs conference in Kansas City – just 9am-3:00pm – a quick day jam-packed with information on setting up a special needs trust, maneuvering and managing a successful IEP (Individualized Education Plan) with the school system, making sense of all of the possible therapies in autism. Again, a great day with tons of valuable, well presented information, but totally overwhelming. Everyone there was wrestling with so much and there was a weight in the room – a mix of sadness, fear, loss and anxiety – among all of the parents and care-givers that hung in the air like a thick fog. It clung to me and I wore it home, not really understanding it was there, yet feeling it and unable to remove it for quite some time.fog

A week after that I attended a one-day conference in Columbia, “All God’s Children”, which was all about inclusion for Special Needs families in the church. Again, lots of great information, inspiring… and yet so many there were coming from a place of sadness, loss and rejection from the one place they felt sure they had hoped to find refuge during the storm – the church. They were there to try and build it back up, for themselves and others, but still that heavy weight of… something… hung in the air and tried to adhere to me. This time I was far more ready the shrug it off – to reject its attachment.

It is this notion of ‘reasonable expectations’, inclusion and acceptance that I just keep turning over and over in my mind and my heart. What is reasonable? Who decides what is expected or how to get there? Why is inclusion so challenging and what does that word inclusion even mean? Is it welcoming the folks from the group home and setting aside a special pew for its residence, cocking our head to the side and smiling as we say ‘how nice of us to include them here’? Is it taking the church van to bring in some folks from the homeless shelter, serving them a meal in the basement and holding a separate prayer service for them? Is it working with someone to ‘enable them’ to act and react and communicate in a way more comfortable for us?

Or, maybe – just maybe – true inclusion is opening up our minds and hearts to anyone and everyone to be there, to serve, to participate to the fullest, in their own way. Inviting anyone to join our community and give from their unique and individual place of strength. Allowing someone to achieve their own personal highest and best that is based on what fills their soul, not mine.

Maybe Wil is going to grow up minimally verbal and live in a group home or with us; maybe he is going to astound us all with his brilliance as he unlocks his own unique way of communicating and moving through the world. Maybe somewhere in between.

Maybe there could be a day when each individual and unique child of God can be just that… Individual and unique. And we can all embrace and welcome that.

If I can embrace that Wil is beautifully and wonderfully made exactly as he is, and lovingly foster whatever future joy life holds specific to him, then maybe I can help others to see that too. Not just in Wil, but in all of God’s creation. Maybe we can all shed our ‘reasonable expectations’ of how we need to act and dress and communicate and achieve; instead embracing a remarkable expectation of uniqueness, individuality, surprising singularity that allows people to shine.

As I try to teach Wilson, I find I am the one who is learning. His view of the world is a little more magical. His ability to focus and embrace things uniquely gives me greater acceptance. His happy, joy-filled babble says more about how he feels the beauty of God’s creation than any lengthy tome I can write.  He feels free to revel in a glorious world, finding marvel in a long blade of grass, new leaves sprouting, the way the wind floats and a shadow falls.

SunshineThruTreesI think our God is a god of the extraordinary. I believe He created my autistic son with just as much grace and love and perfection as he did my other two children and any and every other person. He created the homeless man on the street, the addict, the stripper, the banker, the venture capitalist, the nun and the atheist each with the same depth of love and care.  Jesus came and died for us all. Each and every one.

As Christians, maybe our job here is not to lead people away from their awfulness, but to help each other embrace the amazing that is inherent within us all because of whose we are. Our mission isn’t to help people earn their way to heaven – someplace else – someday – but to do all we can to make this place more heavenly in the here and now.

Maybe all that is a far more reasonable expectation for a child of the one true God.

And that is what my autistic son is teaching me every day.

 

Posted by: Leigh Reynolds | March 14, 2014

Spinning

It was the day after what we all hope was the last snow of the year. Tess had a dentist appointment that afternoon, so we bundled up and headed out. The road was packed with heavy snow and it was slick. As we backed out of the driveway and attempted to head north, (which is a slight incline), the wheels just spun and we couldn’t get any traction. I pulled back into the driveway and tried again. Wheels spinning again, getting nowhere. Finally, after my third or fourth attempt, Tess quite frustratingly said, “Mom, you are not going to get anywhere going that way. Just stop and go another way!”

I was very frustrated now myself. I mean, who wants to be schooled by their 11 year old daughter?! But in my house – a home with an exceptionally bright and determined young lady in it – it happens far too often.

I drove back into the driveway and pulled out heading south, which is slightly downhill. I had to go around the block and circle back to go north – a longer route – but now we were moving. It seemed out of the way at first, but we got there. Unlike my earlier futile attempts that were getting me nowhere.

Isn’t that how it is in life sometimes? We get so stuck in going one way, the route we had planned, that we fail to see it isn’t getting us anywhere. Wheels are spinning, we have no traction, but we just press harder. All we do is create a rut that makes any real progress all the more difficult and further out of reach.

So often, God is trying to show us another way. He is telling us, “Stop. Go my way. I know it seem longer, or out of the way, but trust me. I know what I am doing.” God already knows the plans He has for us and as He tells us in Jeremiah 29:11 they are plans for good, to give us hope and a future. He knows we’re never going to get anywhere worthwhile going the way of the world so He lovingly guides us in another direction.

He has shown this to me over and over again in my life, and yet somehow in my flawed humanness, I still miss it. I push forward, my own way, creating a rut. He has to show me this truth again and again. But He does. Patiently, lovingly and repeatedly.

I get so busy and so caught up in things. Juggling roles of mom, wife, business woman; keeping up with all-things autism for Wil, making meals and packing lunches, managing my company, taking care of clients, cleaning house, errands, keeping tabs on the family calendar which has 5 people’s activities tracked in 5 different colors of ink… Oh, I could go on.

A few years ago I thought I had it figured out. Jake and Tess were getting older and more self-sufficient, I was traveling a lot and loving it, my career was going strong, but my marriage was a wreck. I was mapping out a certain path for myself… Then God told me to stop. Miraculously he put my marriage back on track. He surprised us with Wil, then He really surprised us with Wil’s diagnosis of autism.

I went from high powered meetings to speech and ABA therapy on the floor. I went from trips to LA, NYC and the four corners to working in my basement in sweats, Skype as my main meeting space. The future is uncertain, but I have a solid family that has dinner together more, we chat about our day and we enjoy each other’s company. In a few short years, Jake will be off at college and Tess will be a young lady in high school. That same year, we hope to have Wil in kindergarten and maybe he’ll be talking then and able to tell me about his day. Maybe he won’t.

I am not entirely sure where this path is leading, but I know who is leading the way. If I can remember to patiently follow the route God lays out before me, it will all be alright. The road He takes us down can seem like the long way around at times, but His leading will keep us from spinning our wheels going nowhere, and it will get us down the road closer to His blessings. Along the way, He’ll sprinkle in a myriad of blessings too, I just have to keep my eyes open for them. After all, life is more about the journey and Who you’re walking with.

As for me, I am focusing on walking by faith with the Almighty One who has the strength to see me through, is opening up the way, and is ceaselessly working to bring His best to my life, even when I am too stubborn to see it right away.

Posted by: Leigh Reynolds | February 23, 2014

Freedom to Be…

When I was a kid, Free to Be… You and Me was one of those ‘special’ TV specials… It was all about a mythical land where children are free to be exactly who they are, the way God created them – unique and different and singular and spectacular. “Every boy grows to be his own man, every girl loves to be her own woman.” That was in 1974 (explains a lot, I know) but I think we are still searching for that place.

FreeToBe

Decades later and the world is still, all too often, judgmental with expectations of ‘normalcy’ defined by some criteria created by some important but undisclosed “they.” We see it everywhere. But for me it is hardest to stomach in the church. So many of our houses of worship heap so many expectations on those in attendance… We expect them to wear the right thing, talk a certain way, relate to God in the ‘approved format’ and stay on schedule. Even in the best of churches with the most loving congregations, we can see elements of this.

That is what made this morning, and others in recent history, so incredibly special to me. I recently started attending First Baptist Church in North Kansas City. What is sure to be the subject of a future post is the tale of how we came to be here, but that’s another story…

This morning we were, quite literally, on fire with worship. The garage next door caught on fire. Fire Marshall & team called in, we almost had to be evacuated, but they deemed the sanctuary plenty safe, so we stayed and got our Jesus on. The children did have to be moved from the nursery, just as a precaution, so we were ‘family style.’ As the proceedings began, I went over to our pastor, Tiger, and let him know it might all be a bit much for Wil – all the people, the commotion, the loud music, the dual powerpoint… “I am sure he’ll babble and need to move around a bit,” I told him. He smiled a huge and genuine smile and told me it was more than fine, to let him do whatever he needed and enjoy the service. It would just add to it.

As Wil came in, the countdown clock was running and that fascinated him.  As I greeted out neighbors in the surrounding pews, I let folks know Wil would likely babble (or stim, as it is called in autism.) Everyone, and I mean everyone, smiled genuinely and said no problem. And they meant it. Then the music started.

Wil loves music. He loves the instruments, the voices, the vibrations and – most of all – the drums. There would be no keeping him in his seat. He almost ran over to the drums and I went with him. He was a little confused by the electric drum set, I think, but settled in on the floor right by the drums (as best as an autistic toddler can settle in that setting) and listened to the music, watched the drummer play. We rocked, we sat on the floor and he hung a little upside down in my lap, he laid down on the floor to feel the vibrations, then full-body on my outstretched legs as he likes to do to feel the pressure of being against me. We stood and he pressed his face to mine as I sang, feeling the vibrations of my voice. The I heard him say, sing really, clear as any toddler “Hah-yea-you-ya!”

As Tiger prayed and as the baby dedication occurred, Wil was chattering his happy babble . I was instinctively worried about him being a disruption, that people would be glaring and wishing I’d get my kid in line. But as I looked around, all I saw were loving faces in worship. Those that did catch my eye were smiling at us. Real, genuine, “isn’t that sweet” smiles, not “I’m being polite and smiling, but I sure wish that kid would behave and be quiet” smiles.

I know it doesn’t sound like much, but to me it was the most beautifully loving and accepting moment I may have ever felt. Not only for me as we sat on the floor of the sanctuary engaged in behavior that surely looked odd, but for Wil who was just being himself and coping with a sensory extravaganza the only way he knew how. I felt God’s presence in a tangible way that I really can’t explain. And I know Wil felt it too.

As the mother of an autistic child, what keeps me up at night and fills my prayers the most is that Wil can find enough people in his life that love him and accept him, meeting him right where he is. He won’t ever be typical. He will always be challenged to meet some people’s expectations of how he should behave or communicate. But to me, he will always be exceptional in the best sense of the word. My prayers are filled with petitions that there will be enough people in his life that allow him to express himself as God made him and help him to grow into who God intends. 

Today I felt all that and more. So while I pray that the next door neighbor’s garage can be easily repaired and I am thankful that no one was hurt in the fire, I am eternally grateful for the moment it allowed us to feel this morning and for the church home that ushered it all in.

Posted by: Leigh Reynolds | December 28, 2013

Reinukah

Family Limo Ride through the Branson Christmas Lights

Family Limo Ride through the Branson Christmas Lights

We started this tradition 4 years ago – Daddy wanted us to all get together in the mountains for Christmas, so he rented a beautiful home in the mountains at Estes Park, CO and off we all went; my sisters and our families all packed into one house with our folks. It was wild and wacky and wonderfully fun. We decided to dub it Reinukah – a 4 night Reinhart Family Celebration. Each night a different branch of the family is responsible for a gift for all the kids; usually a gift that involved an activity. A variety of sleds that meant a trip into a mountain park for sledding the next day. Large brass cookie cutters and spatulas, accompanied by sugar cookie baking. Blank wood photo boxes and paints. You get the idea…

We didn’t know it then, but it was Daddy’s last Christmas with us. He was diagnosed with lung cancer a few weeks after we got home and he slipped away to his eternal house party just 5 months later. I think he’s quite pleased to know we continued this as an every-other-year tradition, celebrating this Reinukah and the last in a lake-front lodge home in Branson.

Each arm of the family packs up a ridiculous amount of stuff and packs it into the house; Christmas ornaments, holiday decorations, all of our gifts and more.DSCN8444 The first night in, we buy a tree and deck the halls. For Tracy, she has to have her specific kitchen accoutrement; Nespresso milk frother, some super-fancy griddle, her blender and mixer than may have cost more than my car. Paige and Dan stock the bar and bring the fun in whatever form it may take each year – this year we all got stuffed “snow balls” and an indoor snowball fight ensued. Between mom and my sisters, we have the Spode Christmas dishes and champagne flutes, s’mores supplies for the last night bonfire. Paige brings amazing restaurant-quality cuts of beef for Christmas dinner… I bring a little of it all, but never in as great a supply. Most years I am just lucky to make it before dinner on the first night is over.

It is all chaos and insanity. Our husbands surely don’t understand it all, but they help us pack it all in and load it all out none the less. They are good sports. The cousins get a week to be together a rediscover their family again. My sisters and I cook, spar a bit and laugh a lot. I am confident that it is all a bit too much noise and mess and drink rings on the furniture for mom, but she “gifts” us the house anyway because she knows how much it means to all of us. Mom has always understood what real gift giving is about – understanding what will make someone else happy and putting that first – though I sometimes wonder if she really knows what a tremendous gift this week is.

It is the last day here in BDSCN8420ranson. In the morning, the Colorado contingent will head out first, the rest of us falling in behind. Surely me and my family rushing to get it all packed out before the 10am deadline. In a frenzied sort of fracas, Paige, Tracy and Mom are packing up: pulling down the tree, de-decking the halls, restocking the shelves with the boring brown plates and putting away the Spode, ready for the journey home. Larry has hauled the tree out into the woods; Dan is creatively utilizing the over-flow of groceries we still have in the kitchen. No one will go hungry today. Patrick is in the bedroom with Wil, watching one of ‘his stories’, avoiding the insanity. The girls are ensconced in their bedroom downstairs, texting, posting to Facebook, talking about movies, musicals and boy bands, most likely. And Jake is still in bed.

I am out on the deck, taking a moment to take it all in. I can hear the spring at the end of the cove, the birds in the trees, and the tail-end of the chaos behind me in the house. And somewhere off in the distance, I can hear my dad, telling a tall tale, raising a glass of red wine, and laughing deep in his soul. We are the daughters of the social chairman, he taught us well, and I believe he’d be proud.

It is a week together in a house that isn’t ours, but we manage to make it home. It is a week of the name game, loud laughter, far too much festive food, duct tape, Viking helmets, late mornings in jammies and late nights telling tales. It is a time for Jake and Dan to do a puzzle together, for Nicole to style Jake’s hair and me to style hers, for Zack to marvel in the distinctiveness of Wil and his unique window to the world. This year it was also about Uncle Festivus, Catching Fire, vomit – real and in jelly bean form – and Lysol. It is a thread that I think our grandfather started with his brothers at the Esser Family Christmas parties in Booneville. Maybe it started before then; I’m not sure. But I am so thankful we continue to weave this thread into our children’s lives. I pray they weave it into theirs someday. It is more than a week with too many trappings and far too much food, but usually not enough butter.

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It is Reinukah.

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