The Big Brother

This blog is mostly about food allergies and autism, the two things that have almost single handedly consumed my life for the past 7 years or so. There's a little about my personal oxygen mask project (i.e. running) along with my family and faith, too, but it's mostly short sporadic moments of venting or sharing whatever struggle is facing me that day. When I started writing here, I wasn't sure I wanted to mention my other children. I wasn't sure I wanted to share their lives along with all this, but it's not just my life or Jackson's, but theirs, too. It all intertwines, and we've made it work. Remember that light I mentioned in my last blog post? The one at the end of the tunnel, that blinding scary light? Yeah, well, that light has illuminated more than just the path ahead but the changes that have taken place as our family has grown.

Today is my oldest son's birthday. He's 9. One more year, and I'll have a child in double digits. For some reason that makes me feel old. My oldest (typically developing) son is a very kind, sweet, loving boy with a silly sense of humor and a heart of gold. He spent most of his young little life tagging along as we struggled through all of his brother's medical and developmental problems, and I don't remember him complaining much. The first thing he got to do that was just for him was baseball when he was 5, and for the record, Mommy was the one that insisted he play. We didn't have the money or the time, but I couldn't tell him no anymore. He's now playing travel ball and could easily spend hours practicing every day. He's smart and healthy and a great snuggler even though he's nearly as big as I am. I look forward to watching him grow and become a man. I don't know if it goes along with being the big brother, being a special needs sibling or if it's just who he is (maybe the combination of all three), but he has a very strong protective nature and patience that makes me marvel some days. He's one of the best things that has ever happened to me, and I just had to share how thankful I am for him and all he does to help me. Happy birthday, Jacob!

A boy is truth with dirt on its face,

Beauty with a cut on its finger,

Wisdom with bubble gum in its hair,

And the hope of the future with a frog in its pocket.

Unknown

Laying Down the Fight

Tonight by midnight, Jackson's Medicaid Deeming Waiver review paperwork is due. I did the initial online review, but they sent a paper packet after I finished that, asking for the usual fiery hoop jumping. I panicked at first, but decided I've jumped through these hoops and done this dance several times before. I can totally handle it, and I'm sure I could. This time though, I wasn't so sure I needed to.

We've been told since the first year of his diagnosis that with his exponential progress with therapy and educational resources we could expect him to 'grow out' of therapy. We were told he wouldn't be a lifer, but you can never pin down a timeline on these things. So, we plugged away sometimes wondering if there would ever be light at the end of that tunnel. Then it came, blinding and scarier than the darkness of the tunnel entrance.

I freaked out! First it was private speech therapy. "There is just no more I can do for him clinically," his therapist told us. Then it was school occupational therapy. Same deal. Then his resource teacher at his school (who is VERY close to us) told us he no longer needed to be pulled out of class for special instruction, and she felt he would benefit more from the time in his regular ed classroom. The last one was tougher, though. His private OT very gently told me she didn't know how much longer Jackson would need her. "He's doing SO well!" I know it should have been encouraging, but it was terrifying.

We didn't 'cure' him. The autism is still there. Trust me. It rears it's ugly head, I think, sometimes just to make sure we don't get too comfortable with progress. Jackson is still not as strong as he should be at his age. He still has trouble with fine motor dexterity, especially with heavy resistance. His social skills are still not where they should be, and he STILL has trouble with all the sensory issues that go with toileting. What do you mean, you don't know how much longer he's gonna need you? He is still delayed. He is still struggling. He's still autistic. Autistic children need therapy.

But, this is his life. At some point, he has to take responsibility for his own growth, and in so many ways he has. He's learning and working so hard, just like always. He makes enormous strides every day, and blows me away at how adaptable he has become. If you had seen him the day of his diagnosis and I had told you that he would be growing out of therapy in 2nd grade, you wouldn't have believed me.

It took about a year for me to truly see how far he has come, and I'm once again reminding myself, this process isn't about curing him. All we've gone through until now, all the doctor visits and psych evals, all the therapy, the deeming waiver battles, the IEP's and special classrooms, the medications and special diets, all this was not done to cure him but to equip him to live a happy, fulfilling life.

The struggle isn't over. He will have many more battles to face, but with each day that passes, his strength to fight these battles on his own increases.

We took the summer off OT to see how he would do, and we met with his OT early this week to assess where he was after taking such a long break. We both agreed he no longer needed regular OT appointments. This time, I didn't feel blinded by the light as we stepped out of the tunnel. This time I was encouraged and excited about the new leg of our journey.

Without regular OT, I couldn't justify Medicaid for him (Medicaid doesn't cover music therapy which he will continue for a while). So, I'm laying down this fight, one I've fought for a very long time, and tonight, when I would normally be up worrying if I had jumped through those hoops just right, I'm enjoying this small window of peace before the next battle.

Looking forward to sweet sleep and a brand new day.

Buttermilk Waffles

These waffles are topped with fresh whipped cream, honey, blueberries and strawberries.

I've been making waffles for Jackson since we discovered his food allergies. There are NOT any frozen waffles or waffle mixes on the market that are safe for him that don't taste like cardboard. He has always loved every recipe I've ever made him from gluten and dairy free to the egg free version that completely flopped my taste bud test. So, telling you that this recipe is the bomb because he thinks so isn't gonna mean a whole lot. He just loves anything you can put syrup and whipped cream on. However, telling you that this recipe rocks because my 'natural food is gross' opinionated hubby likes them means this recipe is a keeper.

So, the original recipe is from Cooks Illustrated (LOVE my subscription), but I had to change it a little (don't I always).

Anyway, I will share with you that they said one of the secrets to good buttermilk waffles is a thick batter, and taking the extra time to whip the egg whites and fold them in really does make a difference.

1 1/4 Cup Unbleached All-Purpose Flour
3/4 Cup Whole Wheat Pastry Flour (you can play with this mixture, this is the ratio I need to get my picky hubby to eat them and not complain that they taste like whole wheat bread)
1 tsp Sea Salt
2 tsp Baking Soda
2 Eggs, separated
1 3/4 Cup Buttermilk
4 Tbsp Unsalted Butter, melted

Heat the waffle iron. Whisk dry ingredients together in a medium bowl. Combine the buttermilk and butter in a small bowl and whisk in the egg yolks. In a medium bowl, beat the egg whites until they hold a 2 inch peak. Add the buttermilk mixture to the dry ingredients in a thin steady stream while gently mixing with a rubber spatula. Gently fold in the egg whites until combined.

Spread or drop the batter onto the waffle iron following the manufacturer's instructions. Cook until golden brown, about 2-5 minutes.

These work well, frozen, too. If you know that you're going to freeze them and want to use your toaster to reheat and crisp them up, cook them until just about done but not all the way browned. That way, when you pop them in your toaster, they'll finish browning and be nice and crispy.

Makes 10-12 regular sized waffles.

Super yummy!

11 Years, and a Prayer

15 years ago at my church graduation party, this boy (who used to annoy me to no end) gave me a box of cards with a book of stamps, his Auburn address and a sweet note requesting I keep in touch. That small, sweet gesture changed my life forever. Eventually, I used those cards, and he wrote back. Pretty soon we were talking on the phone for hours (annoying my roommates) and planning weekend visits together. The rest is history, and today marks eleven years since I walked down the isle to that annoying boy. ;-)

A sweet old lady once offered some advice to this new bride. She told me the love that flutters in your stomach and dances around in your head, that's not the real thing, or at least not the whole thing. That might be where it starts, but the real thing is waking up one day realizing all the glamour of the wedding and honeymoon is over. Understanding that you can't dress yourself up and hide the crazy anymore. Seeing each other for the often imperfect, sometimes annoying, increasingly unsightly, ever changing human beings you really are. And choosing to love each other anyway. That's the real thing. And, the longer I'm married, the more I'm convinced there really is more to the kind of love you choose than the kind you fall into.

As I was thinking about what to blog tonight, I thought about typing out a story from the past eleven years, something funny or sad, something sweet or just plain sappy, but I think I would like to type out a prayer, for him and me and the next eleven years.

An Open Prayer for my Husband:

I pray for God to grant you wisdom and courage to lead and guide our family. I pray that God would continue to work through you in the lives of your patients, your friends, your family and our community. I pray that God would protect you and strengthen you so that your children will always have a father to go to when life is scary or confusing or hard. I pray that He would give you good health so I never have to worry about raising them on my own. I pray that your arms are always open and your heart is always full. I pray that someday we can look at our grown children and growing family and be glad we chose each other all those years ago. I pray that as you reach the end of your journey and look back at the life you lived you have no regrets.

I pray that God gives you grace to forgive me when I fail you, when my attitude reflects contempt and resentment, and when I let the stress of life come between us.

I pray that every new day God gives us, we continue to choose each other. I pray that the hand I'm holding when its all over is yours.

I pray for another eleven years, and another and another.

Happy anniversary, Baby!

The Weird Kid

Jackson and I were grocery shopping today. Just the two of us, two birds of a feather. His job was holding the shopping list, and mine was pushing the cart. He really enjoys being in charge of the list, he controls where we go and what goes in the cart. Well, that is unless Mommy puts things on the list in the wrong order or remembers something that isn't on the list. Then he jokingly scolds, "Mommy?!" and either draws arrows to where the item should have been on the list or writes in the missing item just so he can cross it off.

Did I mention he also gets to hold the pen? He loves crossing things off. In fact, I think he might like that as much as his mommy, who may or may not put some things on lists that don't really need to be there just so she can cross them off and feel like she's accomplishing more than she really is. Yeah, see, thats what I mean by birds of a feather. That's my boy, y'all! Same wavelength.

Anyway, we're walking along, and he crosses off the wrong item on the list. He stops and says, "Oh, I'm dumb." He explains, and I reply, "You're not dumb. You know I don't like using that word when we're talking about people. You made a mistake. Mommy's made ten of those since we walked in the store." His reply, "Yeah, but I'm the weird kid.

[Pause for effect]

Cue the rising of my internal mama bear. Who told my baby he's weird? Who? I'll show them 'weird' and several other more colorful adjectives. Just le'me at um.

[A few seconds to process]

Cue the over explaining lesson giver that wants to stop him right there in front of God and everybody and talk about how 'weird' is what people say when someone is different than everyone else, different from them in a way that they don't understand. But, being just like everyone else means you're hiding who you really are. Who wants to be 'normal'? 'Normal' people don't find cures for deadly diseases or write novels people still read and talk about centuries after they're dead. 'Normal' people don't paint ceilings in cathedrals or write music that calms the mind. 'Normal' people don't deliver life saving medicine, healthy food or clean water to the forgotten people on our planet. 'Normal' people don't change the world. They don't even make a ripple in the lives around them. They live and die never accomplishing more than fitting in. I wanted to tell him how I LOVE that he's different, and how I've NEVER wanted him to be 'normal'.

And I did, later.

First, though, that word started flooding my mind. All the references and uses I've made. 'How weird is that?' 'Don't pick your nose. That's weird.' When I thought about it, I figured out that he could have just put together all the things I said were weird, things he probably does and made the inference (crazy how he can do that sometimes now, you autism moms know what I'm talking about, that's a big deal). He could have decided he was weird just from what I have said to him or around him.

Cue the mommy guilt.

There's another word that has been floating around in debate these days, and I never understood just how hurtful it can be until my Jackson was diagnosed with autism. We don't say it in our house, and I don't know if Jackson has ever even heard it, yet anyway. If you don't know the word I'm talking about, its 'retarded'. It's not a bad word, not profanity or vulgar, but it can be a hurtful word all the same. Not just to the mommies and daddies and caregivers and others who love someone with disabilities, but to the disabled themselves. They may not hear and understand or process the way we do, but they get it. They know what it means. And that one word thrown at them carelessly can define how they see themselves even if you never meant for it to.

How does a 7 year old boy with autism decide he's the weird kid? Because in this world, even in our home where I've done all I can to make a safe comfortable place for my babies to grow up, we define normal with our words and actions and demand conformity. He's getting to the point in his development where he sees just how different he is, and words thrown around carelessly, they land differently on his little ears.

"Death and life are in the power of the tongue."

Proverbs 18:21

I want my words to give life, inspiration and encouragement to my children. I don't ever want to tear them down or make them feel inferior.

So, this kid's on a mission. After all, we've got more stuff to put in the cart and cross off this 'weird' list so we can go home and get back to more important things like building lego towers and eating ice cream (which is last on the list because it melts).

As my head swirls from the whirlwind of thoughts, he hasn't skipped a beat, and I tell him, "You're not weird. You're the best kind of different there is, and I love you."

Changing the World in 30 Some Odd Years

I haven't blogged in a while. There's lots going on in my life and my kitchen, but the energy and time to put it out there in a way you might want to read it, it's just not there. I am journaling and reading, and I will often think to myself, "I need to share that." However, nothing ever seems to get typed, and if it does, somehow sharing doesn't feel right by the time I get to the end of the post. There have been several posts I decided to just save for another day.

So, to sum all that up. I'm stuck. Pretty much the same place I was when this post was written. That was 3 years ago. I've struggled more with this birthday than any before. I think partly because I'm still dealing with many of the same things that I've been struggling with since childhood. I feel like I should be so much farther along than I am. Seriously, if I were a baby failing to develop and grow, there would be panic. I know all about that kind of panic with Jackson's developmental delays. But, see when you're a grown up, and the delay is spiritual, you can hide it all by simply going through the motions and smiling.  Just laugh every now and then, say something spiritual and profound once in a while, and everyone thinks you're doing great. I also think I'm struggling with this birthday because being stuck like I am, I'm reminiscing and thinking about my childhood and the person I wanted to be and the things I wanted to do. I was gonna change the world, Y'all, and somehow 30 some odd years seemed like plenty of time to do it. Oh, to have that kind of imaginative faith again.

Life comes in seasons, and I know that this, too, shall pass. And, when it does, I'll let you know.

Anyway, back to the point of this post.

I'm reading several books right now. One is Running The Edge by Adam Goucher and Tim Catalano. I bought it because I read Olympic marathoner Kara Goucher's book Running for Women and LOVED it! I kinda thought her husband's book would be just as good. Well, it's a little heavy on the psychology and humanistic philosophy for me, but not a bad read. I prefer runners to write about running, but you know, I'm weird like that. Anyway, there are some really great points and stories inside. Today I read a quote that really spoke to me, and I thought I would share it for my birthday. (One day late. Shh.)

"Among the crypts in Westminster Abbey, there is an inscription on the tomb of an Anglican bishop.

"When I was young and free and my imagination had no limits, I dreamed of changing the world. As I grew older and wiser, I discovered the world would not change, so I shortened my sights somewhat and decided to change only my country.

But it, too, seemed immovable.

As I grew into my twilight years, in one last desperate attempt, I settled for changing only my family, those closest to me, but alas, they would have none of it.

And now, as I lie on my deathbed, I suddenly realize: If I had only changed myself first, then by example I would have changed my family.

From their inspiration and encouragement, I would then have been able to better my country, and who knows, I may have even changed the world."

I love this inscription, and will now add my thirty-something-whipper-snapper thoughts on it. To truly change the world you have to start with yourself, and focus on being obedient to the One who created you and the calling he gave you. I think there would be many more world changers among us if we would let Him change us BEFORE we try to conquer the world. Otherwise, you just get discouraged and burnt out....and stuck.

Jacob's No Bake Cookies

My oldest son is in 2nd grade, and one of his recent assignments was a how-to paper. After thinking for a while and knowing that his dad and I (and his teacher) would probably say no to anything baseball, he decided he wanted to make no-bake cookies. "Like the ones Daddy makes." (He says this because Mommy doesn't make no-bake cookies because mommy doesn't like no-bake cookies. Shhh. I ate his and loved them. ;-)

Daddy makes his sister's recipe, which turns out to be the go-to recipe I've seen floating around Pinterest lately (found here).

The only thing is that this recipe calls for the use of the stove and boiling things. Not really safe for a clumsy absent minded 8 year old. After all, he IS his mother's son. So, working together we adapted the recipe to the microwave AND added a 'secret ingredient'. He was able to make these by himself with only a little supervision. How cool is that? I'm raising a chef....or at least a kid who might be happy to help his mommy in the kitchen, wahoo!

So, here it is, exactly the way it appeared in his finished paper.

Do you like chocolate and peanut butter? If so, then here is a kid friendly recipe for how to make No Bake Cookies. 

½ cup butter
2 cups sugar
½ cup milk
4 Tbsp cocoa
½ cup peanut butter
3 to 3 ½ cup quick cooking oats
2 tsp vanilla

First combine butter, sugar, milk and cocoa in a medium microwave safe bowl. Microwave until butter is melted, about 3 minutes, stirring every minute or so. Then microwave for about 30 seconds more, until bubbly. Then quickly add the last ingredients. Add the secret ingredient. Scoop out onto wax paper, and allow to cool. Finally eat.

Here are some more pics.

What bubbly looks like coming out of the microwave.

All mixed up and ready to scoop.

Jacob chose white chocolate chips for the secret ingredient. They melted, but marbled in. So, it looked like a mistake at first, but turned out to be a pretty good choice in the end. I ended up dipping my fingers in water and pushing them down into disks after he scooped them all out.