I originally started this blog a few years ago to chronicle Noah's daily struggles with autism. It was a dark time in my life - a time when I felt that things would never get better. It was a time when I felt that all my hopes and dreams for my son and for our family had died. In my efforts to help Noah recover from autism, I began a journey that inadvertently led me to rediscover myself. I learned how to laugh again. How to dream again. How to live again. How to love again.

Autism Schmaustism. He's still our son.

This is a blog celebrating our family. Our kids. Our life.

Tuesday, August 17, 2010

A Letter to Myself at Thirty


Ahhh, here I sit. August 17th and it's my 37th birthday - and let me tell you... this year has been a year of reflection. I think I finally started to understand myself this past year. Sounds silly, maybe. I mean how can you live 36 years and not understand yourself... but it's like things just started making sense. My wants, my needs, my personality, my parenting skills, what I can handle and can't handle, letting go, dreaming big.... all of it just started to click this past year. And I don't have all the answers.... I think that's obvious. But I'm starting to feel a bit at peace with myself and who I am.

I still worry, though. A LOT. Especially about the kids. Especially about Noah. And I still sometimes mourn the life I thought I was supposed to have... but it's not as bad as I thought it would be. And that's why I thought that on my 37th birthday I'd write a letter to myself at thirty. Because thirty was a very difficult year in my life. It was the year we found out Noah had autism. But the future I envisioned at thirty was so so wrong.

If you haven't yet read "A Letter to Myself at Twenty" you can do so HERE. It's probably my favorite blog post. And, wow, what a difference 10 years makes!
So here we go....


Dear Leslie,

Oh Leslie. It's August 17th, 2003 and you've just turned 30! You should be out celebrating. Living it up. You only turn 30 once, you know.

But here you are sitting at the kitchen table with a cup of coffee in your hand and you're crying. And you feel like the whole weight of the world is on your shoulders. And you feel like no one understands. And you feel so alone.

It's been awhile since we last spoke. You had just turned 20 when I last wrote to you. So much has changed! You moved to England. You finished college. You moved back to Texas. Got married. Landed your dream job. Bought a house. And, oh, yeah! Became a mom!

He's a beautiful boy, by the way. Look at that smile! And those cheeks. I just want to squeeze them!

He really is lovely, Leslie. You'd never know by looking at him that he has autism. Are you sure?

Okay, okay. I'm just kidding. I know you're tired of people asking that. But you know, don't you? You know in your heart that something's wrong. You know that the smile and eye contact is simply because he loves the flash of the camera.

And look at you! You don't look too bad. No one can tell from your picture that you haven't slept more than 4 hours a night for the last 11 months. Or that you stay up until 3 am each night researching ways to help your son. Or that you barely speak to your husband anymore because you feel just so sad and angry all the time.

Besides, you don't have time for idle chit-chat, right? Every second spent talking is a second wasted towards finding a cure for your son.

It's not what you pictured, is it? Not what you imagined.

Remember when you were a kid and thirty seemed soooooo old? You just knew you'd be living in a huge house, driving a fancy car, married to a rich man and have perfectly well-behaved children. Why do kids dream stuff like that? Who told us that that's what we should aim for in life?

Leslie, I just don't know what to tell you. I know that all you want is for Noah to be healed. You want him to speak and to make eye contact and to play and be a normal, happy, healthy little boy. How do I tell you that 7 years into the future, he is still severely autistic? How do I tell you that he still doesn't speak? Maybe a word every now and again, but he's still nonverbal. How do I tell you that he's almost 9 and still in diapers? How do I tell you put away the computer, keep your money, and just enjoy what you have?

How do I say that it will get actually worse? How do I tell you that in two years' time, you'll be living with your parents? Do I let you know now that Noah is actually the least of your worries? That in a couple of years you'll have a daughter who is so traumatized that she actually spends an entire summer trying to poke your eyes out? Or that you have another son who is so scared of the world, who finds life so overwhelming, that at times it's debilitating?

So, honey, I'm just going to shoot straight with you. Because you need a wake-up call. Because 18 months from now you are going to be so overwhelmed and so exhausted from having a child who screams 15 hours a day, who never sleeps, who has chronic diarrhea and who seems in so much pain that you are actually going to say, "I think he'd be better off if he just died."

And 2 months after that, you are going to be so ashamed that you said that and even though you know it was said in a moment of frustration and pure exhaustion, you are never ever ever ever going to forgive yourself.

Sweetie, that little boy is the best thing that is ever going to happen to you. One day, and I know it's hard to believe it right now, but one day you are going to realize that you couldn't live without him. You're going to watch him sleep and just cry over how beautiful he is. You're going to look forward to when he wakes up each morning so that you can spend the day with him.

And one day you are going to find a bunch of pictures from when he was little and you're going to cry, "What happened?? I don't remember this! Why didn't I relax? Why did I spent all that time trying to fix him? Why didn't I just enjoy him? I can never have that time back. Never!"

And that will stay with you for a long long long time.

So, sweetie, I just want to tell you a few things... from a smarter and wise You. Because the next few years are going to be rough. But you DO make it. And you and Sim DO make it. But you make it so hard because you're so hard on yourself and you have such high expectations of you and everyone around you. So here's my advice...

Don't be so mad at your husband. Honey, everyone grieves in their own way. I mean, it wasn't too long ago that you both were having to adjust to just being parents. Just being a parent is hard. And now you're having to adjust to finding out that your son has autism. And your lives (and your home) are being taken over by therapists for 6 hours a day. All the thoughts and plans and dreams you had are gone.

That. Is. Hard.

Sweetie, just remember how you handled Mom's cancer. And Marcy's stroke. With all rights, they should both hate you forever. You ran away from it. From two very important people in your life.

Sim is dealing with this, too. Not just you. It affects him. And Mom. And Dad. And Mark. And Beth. And all your friends. And everyone handles things differently. Just because Sim isn't on the computer 24/7 looking up information on cod liver oil and chelation and RNA and B12 shots and gluten-free diets and detoxifying your house doesn't mean that he doesn't care.

Cut him some slack. You're both grieving.

And, believe it or not, he turns out to be the best dad ever. There will come a time - many times - where you watch him play with the kids and thank God that He blessed your family with such a wonderful man. And there will come a time where you know beyond a shadow of a doubt that he's the best dad your kids could ever have.

So put down the research papers. Turn off the computer. Wipe your eyes. Blow your nose. And go spend some time with your husband.

And QUIT WORRYING! I know it's easy for me to say that.... but, really, it's not. Because you'll find at 37 that you still worry... about everything! It's just different things. Homeschooling. Bullies. Quirky kids. RAD. Okay, wait. I don't want to throw all this on you right now. But just know that even though some of your fears at 30 are still the same (Noah not talking. Noah having autism) you will start to make peace with it. It eventually becomes your normal. And I just hate watching you cry and worry and place his entire recovery on your shoulders when I know what the outcome will be.

Honey, Noah is going to change the world. His autistic little self is going to touch so many people. You have no idea how many children are going to get better because of him... because you tell them the things you did with Noah. And yes, I know you don't want him to be a martyr and I know it hurts that everything you tried didn't work and I know it hurts to watch other kids get better from doing the same thing... but he is leaving a legacy. He is leaving a mark of importance on the world. And he will touch people. His story will touch people and change lives and help others realize what is important in life.

Did you know that there are a few less orphans in the world because of Noah? Yes! Some people will actually hear your story and adopt. Yes, it's true!

Sweetie, you just have to let go. You have to. Please enjoy him for who he is. I mean, never stop trying to help him reach his potential, but just please take some of the guilt and responsibility off your shoulders.

It will hurt. I'm not going to lie. You'll always think about what could have been. 6 years from now you're going to be sitting in the school line waiting to pick up your middle child from kindergarten and you're going to watch the 2nd graders outside at recess. And you're going to think, "Yes. Noah should be in 2nd grade. Noah should be out there playing. Noah should have friends. This is what it should be like." And you're going to cry. But then you'll look in the back seat and see his 8 year old face and you'll turn and tickle his feet and he'll laugh and you know beyond a shadow of a doubt that he loves you and that he knows you love him. And you think, "I never knew it was possible to love someone so much."

And you'll remember the time you thought it would be better if he died and you wonder how you were even in such a place. You'll remember how dark those years were. How the future just seemed black. And you'll wish you could go back in time and do things differently.....

But, hey, whew, let's lighten this up. It's getting dark, isn't it?

Listen your thirtieth year is not all doom and gloom!

You get to go to England and Northern Ireland.

You become a stay-at-home mom.

You realize the vast importance that chocolate plays in your life.

You can still fit into your size 6's... which, honey, you truly need to celebrate because 30 is the year that you start packing on the weight. Geez.... didn't you read the letter I wrote to you when you were 20???

The year you're 30 is also the year Jake Gyllenhaal and Kirsten Dunst breakup and that makes you infinitely happy. And just to let you know, you need to hold on to the future because in 2010 he'll star in the Prince of Persia and even though it flops at the box office, he looks really good. And you can buy action figures of him at Walmart and pretend you bought them for your children. Just a little secret between us girls.

U2 releases a new album. Okay, technically it's when you're 31, but thought you could use the pick-me-up.

Staying up all night trying to rock a child to sleep means that you are free to watch VH1 at all hours and you are able to watch "I love the 70's" "I love the 80's" and "I love the 90's" while simultaneously reliving your youth and love for all things Def Leppard.

Now... just to give you a sneak peek of the future, let me tell you that some of the same things that were true when you were twenty that are still true when you're thirty are STILL true when you're 37....

1. U2 is still your favorite band.

2. You still wear birkenstocks. Gah, how can anyone not love them?

3. You still listen to New Order to lift your mood. Oh, and the child who has anxiety issues? He loves techno. Score!

4. You still have your Levi's jacket. (And the daughter who tried to poke your eyes out? She starts to heal and begs you to buy one for her because she wants to dress just like you.)

5. You will still have never been to Eastern Europe but will want to go..... and you won't bat an eye at going when you're 60 and have to take a 32 year old Noah with you because you love spending time with him.

6. You'll still want to adopt (again!) but you'll keep it to yourself lest people think you're nuts.

Oh! And remember when you were 20 and I told you that when you were 30 you'd go to Kirsten's house and eat 4lbs of Brie covered in walnuts?? That's just around the corner. Listen carefully...don't do it! Better yet. Cancel. Say you have the flu! Honey, you can't resist that temptation. Remember your butt! Think of your butt!

Oh, and cheer up, Sleepy Jean. You ARE going to go out tonight. It's your 30th Birthday! The Russian girls end up dragging you out. They do love a good get together, don't they? Just a word of advice, though. Don't wear that blue T-shirt that makes you look pregnant. You're not going to find it funny when someone mentions it. Oh, and perhaps you'd better forgo the spinach artichoke dip at the restaurant. Remember? 30? The beginning of the end of your waistline?

You know what. Nevermind. You only turn 30 once. Eat it up. But step away from the brie. I repeat... Step Away From The Brie!

Happy Birthday, Sweetie.

Love,

Yourself

Friday, August 13, 2010

What We've Decided About School This Year

Okay. So, um, we've decided to send Nandi & Eli to public school this year.

Eeek!

I know. I know. After all the belly-aching that I did last year and all the reasons I've listed about why Eli would do better being homeschooled and after all the WONDERFUL advice that ya'll gave me about homeschooling.... and I go and do this.

How many of you want to smack me upside the head right about now?

Oh man. It was a hard hard HARD decision. I mean, if I keep Eli home and put Nandi in school then I know without a doubt that her RAD would flare-up big time. And if I keep them both home then Noah would really suffer. Poor thing has already been ignored practically all summer long. It's easy to ignore him because he's so quiet (literally) and likes to stay in his room. And if I put Nandi & Eli both in school, then Noah would finally get the attention he needs (and maybe get potty-trained!) but Eli would have a miserable time.

How do you choose? How do you say, "Okay, this child is going to have to suffer so these two can be okay?"

So I ended up doing what was best for me. And that's to keep homeschooling Noah and let Nandi & Eli attend public school this year.

Deep breath. I know that must sound incredibly selfish. But I've really thought about it and prayed about it and stressed about it. Omigosh, have I stressed. And even though I never heard God tell me directly what to do (like He did with Noah), when we made the decision not to homeschool Nandi & Eli this year, it was like a huge relief came over me. Like all the weight of the world had finally dropped off.

And I felt free.

To tell you the truth, this summer hasn't been the greatest. I've been trying to homeschool the kids this summer to give it a trial run and we've all been miserable. Well, Nandi actually likes school. She wants to do it all the time and I think she'll do well in Kindergarten. I try not think about her older years because I'll start hyperventilating. But Kindergarten should be just fine.

But Eli... oh my word. I swear I have an ulcer. I mean it. I'm pretty darn sure.

I love him dearly, but we butt heads All. The. Time. And he's a manipulative little sucker. He doesn't act like this with his teacher or his daddy or his grandma or anyone else. But he gets around me and all of a sudden he forgets how to read, doesn't know how to erase an answer, holds books upside down, gets tired, has his arms start itching, gets hungry, you name it.

Anything to avoid doing school work.

Plus, he flat-out told me that he knows that eventually he'll get his way if he wears me down.

Do you see what I'm dealing with??

Anyway, the thing I've really had to come to terms with this summer is my emotional health. I feel things really deeply. Always have. And I was born with a super extra helping of good ol' Guilt. It permeates everything. I constantly feel guilty about something. Usually parenting. Sometimes about eating too much cheese. Never ever about hiding Reece's Pieces in the back of my drawer underneath my Shape magazines.

Oh, the irony.

But it's always there.

I also can get depressed and down very easily. I did have a couple of moments of utter darkness four years ago that I never ever want to revisit. And so, I think I really need to keep myself in a good mental shape. And I need to keep my kids in a good mental shape. And, truth me told, I can get worn-down and overwhelmed very easily and my biggest fear is that one day I'm going to snap and say something I'll regret. I need to protect my children and be their advocate. I don't want to be the one who loses her temper and destroys their self-esteem.

Does that make sense?

You know, the hardest part is coming to terms with the fact that you are who you are and you need to stop wishing you could be like everyone else. Man, I wish I could homeschool. And I know some of you might be saying, "But I didn't think I could, either! And I'm doing it. You CAN do it!" But, you know, I just don't feel called to do it right now. I do feel called to do it with Noah and it has NOTHING to do with me loving one child more than the other or thinking one child is more important than the other. I know without a doubt that God told me to homeschool Noah, but I haven't gotten that confirmation yet about Nandi & Eli. My gut tells me that it will happen someday, so maybe I'm okay with it right now because I know that public school won't be forever. But, for now, I feel pretty good about them going.

And, honestly, maybe I'm just a big nerd, but I'm getting excited about school starting. I love Meet the Teacher Night. And I love the notes that get sent home. And I love meeting other parents. It makes me feel like part of a community. And, yes, I actually look forward to those Scholastic Book Order Forms that come home in backpacks once a month. And I love the holiday parties. And the Talent Show.

I'm not going to lie. It's going to be hard. Really hard. Kindergarten was hard for Eli and I know First Grade will be even harder. Who knows... he may last the whole year or we may pull him out after the first month. But really, what helps me with this is knowing that I'm still going to be his mom.

Even though he'll be gone until 3:30 every day... I'm still going to be his mom. I'm still going to be his teacher. And the same with Nandi. I'm not going to stop being in their lives just because they're going to public school. Right now, I'm still the person they love more than anyone else in the world. And, yes, that will change as they get older... but that would change regardless of whether or not I homeschool them. It'll change because that's life and that's part of the growing up process.

So, anyway, I'm looking forward to the start of school. I feel confident that we're making the right decision (for the time being - ha!) and that this is what's best for me to be the kind of mom I desire to me... and that my kids desire me to be.... one that's calm, relaxed, happy, and caring. Hopefully, Stressed-out Screaming Mom will soon be a long faded memory.

And if there's a gambling pool going on about how long it takes me to write an "I Hate Public School" blog post... just keep it to yourself for the time being, 'kay? ;-)

P.S. And if there are any flames, please keep them light. It's hard to get out here and take the "I'm going to do what's best for me" approach. Sometimes, the "What's best for Mom approach" can also be what's best for the kids.

You know that saying. If Mom ain't happy..... ain't nobody happy!