Forgive yourself

Dear Mom,

I know. There are so many studies out there that all tell you what "caused" your child's autism, what brought you to the point you're at and the world you live in now. One says it's your age, another says it's that pesky thyroid condition you've had for years. Yet another says it's genetic, and then there's the one with the link between autism and induced labor. And of course, who could forget the ancient theory that autism moms are "refrigerator moms," mothers who are unable or unwilling to express emotions to our children and thus stunt them somehow. And, oh, so many more-it's to the point where you're worried your very ability to breathe may have "done this" to your precious child.

Stop.

Stop now.

Stop beating yourself up. Stop wondering where you went wrong. Stop. Stop. Stop.

I am you. I am the mom who sat at the desk, scrolling through Google, looking for answers. I am the mother who felt my heart drop to my feet when they linked autism and maternal illness during pregnancy-I had H1N1; did I do this? Why oh why didn't I take better care of myself? I am the mother of the premature baby who grew up to have autism who never really forgave herself for it-everyone knows preemies are more likely to have autism, right? I am the mother who has lost sleep wondering if I am the cause of my precious boy's problems, trying to find the point where I failed him so miserably. I am the mom who cried herself to sleep for a long time after d-day.

I am you.

I know what you're thinking. "This could never happen to us. We have no one biologically related to us with an autism disorder. I had to have done something. This is somehow my fault." You go through your pregnancy-did you do something wrong? Should you have gone on maternity leave sooner? You go through your labor-should you have foregone the drugs? Was it because, like me, you had a c-section? You go through the early days of your child's life-was it that cold he had when he was a month old? What about the time the cat jumped on her head? Was it what I fed her? Should have breastfed instead? Or should I have bottlefed instead? You question every move, every thought, every decision you've ever made since the moment your precious child was conceived.

Stop.

You did not, I'm guessing, look at your ultrasounds and say to yourself or anyone else "God, I hope this kid's autistic!" You did not manipulate any part of your genetics, your partner's genetics, or anything else to ensure that your child was autistic. No one handed you a syringe and said "If you inject her with this, she'll be autistic," and then injected your child with it. You did nothing but get pregnant, give birth, fall in love with your baby, and bring them home to love, cherish, and raise.

You did nothing wrong.

I want you to do something. Go to your child. If your child is asleep right now, think about them. Are they happy? Do they know beyond a doubt, even if they can't express it, that they are loved? Wanted? Cherished? Do you fight every day that uphill battle we all fight to get our children what they need, what they deserve? Do you give them all they need and then some?

Is the answer to all that "Yes"?

I thought so.

It's not your fault, Mom, and if your baby knew how you were feeling, he'd tell you the same thing. "You didn't do this to me, Mom," he'd tell you. "I don't know why I am this way, Mom, but you didn't do it, and I'm okay, Mom."

It is something we need to learn to accept, you and I. We need to learn to forgive ourselves for what we had no control over. As moms, our goal, our job in this life is to protect our children from the bad things that can happen to them, from crimes to drugs to any kind of illness. And when we learn that something has happened, we feel we failed them, and that is natural.

Forgive yourself, my fellow mom. Forgive yourself for what you didn't know and couldn't protect him from. Forgive yourself for not being able to take it away from her. Forgive yourself for not being able to trade places with your baby and navigate the world that will never fully make sense to them for them.

Forgive yourself, my fellow mom, because you deserve to, because your baby needs you to.

Forgive yourself.

Love,
Me

Courage is being a single parent

"I could never be a single mom."

I hear that a lot from my friends and family who aren't single moms. That, to me, makes it sound as if they are in awe of single parents, which is all well and good-it is vastly different from parenting when you're in a relationship. Many of them pity single parents, so sure that we have the worst end of the deal.

Oh, there are disadvantages in abundance to being a single parent. Whether you are a single mom or dad, or single-handedly raising your grandchildren, you face many of the same problems: financial hardship, having to explain to your children where the other parent is if they're uninvolved or under-involved, handling all the problems on your own with little or no support...all the things that people in relationships are well aware of and can't imagine facing themselves.

Trust me, very few single parents ever thought we'd be in the position we're in.

I can't speak for all single parents, so I'll just say that in my experience raising a disabled child and a typical child who have an uninvolved father on my own, the hardships are numerous. I juggle doctor appointments with both kids in tow, whether they are Kai's, Taryn's, or my own. I've gone without a surgery I need for nearly a year now because I don't have the childcare to do it. Taryn has learned to walk, run, and speak attending physical, occupational, and speech therapies with his older brother, while all the attention was on Kai and not him. I have learned to hold my screaming, struggling three year-old with one arm while assisting the nurse attempting to give my one year old a shot with the other. I have struggled to pay bills from month to month, sometimes calling family in tears unsure of how I'm to pay this bill or that bill because insurance refused to cover Kai's appointment or Taryn's medicine or some other thing cropped up and it was important and I had to pay it. I have felt like a failure when my youngest son spends days on end playing on his own because I'm busy running my older child to appointments that call for my full attention, or because his big brother has hurtled out of control and I need to deal with him, so while Taryn's basic needs are met, his need for my attention has gone unmet. Those are usually the days I let him stay up late because I know he needs me, and bedtime can wait-he can't. I've cried when my oldest son demands his father and I have no answer for him. But.

There's always a but.

For every unpaid bill, there's a day full of memories. There's the day we spent baking cookies because the boys wanted to, and the day we spent camping in the living room because it was too icky to go outside and I needed a way to entertain them. For all the bad days, there are the nights when I've ended up with both boys snuggled up in my bed, watching movies with me and giggling and talking in words I don't understand. For every appointment where all the attention was focused on Kai and Taryn took a backseat, there is a night full of laughter and fun projects Taryn and I have done after Kai was in bed. For every unmet demand for their father, there is another day full of their mom that they can look back on when they grow up and say "No matter what we went through, Mom was there. No matter what we said or did to her, she loved us, and she never left us. For every even in our lives that our dad missed, our mom cheered us on twice as much."

For every screaming match between me and their father in which I begged and pleaded with him "Just pay attention, please! Just see them, play with them, stick your head through the front door and yell that you love them-anything! Please!", there is a hug, a kiss, a snuggle from one or both boys that lets me know, on some level, they understand. For every time I saw another child with their father at the park and broke my heart over my children's lack of that relationship, there is an  "I love you Mom!", a special moment that can never be replaced-there is my children's knowledge that their mother adores them. For every moment I felt I couldn't do it on my own, and for all those moments still sure to come in the years stretching before us, there is another moment that tells me, I might not have all the answers, and I might make mistakes, and I can never replace their father, but I've done the best I can, and somewhere deep down they know that.

I was that person, once. A long time ago, it seems. I never thought, when they handed me Kai the day he was born, that I would find myself a single mother of two and that Kai would be revealed to have so many health problems. And though that has undoubtedly made my experience different from many other single parents, it has made it no less special and incredible. One day, my children will look back and say "Wow. Mom did all that on her own?" And it will hopefully give them respect for women and mothers they will meet, especially the women I hope they some day fall in love with. I may not know what the future holds in store for them (unfortunately, one of the Mom super powers I didn't get was psychic ability), but I do hope that for them-that they will fall in love one day, and that they will know women are strong; I hope that I, and all the other single parents out there, are strong enough to teach our children, come what may, you can do it on your own. All the single dads, I hope you set the bar high for your sons and daughters-show your sons what a man should be, involved and loving. Show your daughters that there is no need to settle-they can have high standards because they deserve it. All the other single moms, teach your sons that the future mother of their child doesn't need them, and thus they must treat her well to deserve her. Teach them how to get along with their ex if it ever comes down to that, but to know what to do if that isn't possible. Teach your daughters to be strong, self-reliant women. All the grandparents out there raising their grandkids for whatever reason, teach those kids the old-fashioned values parents of my generation may not think to impart. Raise them to be ladies and gentlemen like you were. Teach them that so that, if your granddaughter falls in love with my son, she can teach him what I didn't know to teach him.

And all you parents in relationships, don't worry-if your relationship ends, there's a lot of us out here; we've got your back.

What I WISH I could give to the people at the store

Dear World,

Do you know what you do that irritates me to no end?

You refuse to look a special needs child in the eye and ask THEM what's up with them. You insist on talking to us, the parents and family members, as though the kids can't even hear you.

Here's a heads up: generally, they can hear you.

And they don't like you.

I expect a random child to ask "What's wrong with his feet/legs?" I don't expect a full grown adult, in earshot of my son, to call out "Hey lady, what's wrong with your kid's feet/legs?"

Not a thing. What's wrong with you brain?

Kai's feet and legs are the only medical problem he has that you can see just by looking at him. That doesn't mean you need to point it out. Would you like me to holler across the grocery aisle at you about the hairy wart on your chin? No? Then why did you just do essentially the same thing to my three year old?

Common sense, ladies and gentlemen, is no longer common.

Here's a few basic guidelines for you to follow:

1) If the child looks old enough to talk and the parents don't stop you, ask THEM what's up with them if you really need to know.

2) If your child asks what's wrong with little Timmy's legs/feet/hands/arms/mouth/etc., have them politely ask little Timmy, or explain that it's just the way he was born and it's okay that he's different.

3) If you feel the need to holler at me across the store about my child and his medical problems, please provide your mother's phone number and address. I'll be sure to inform her that the general sense of decorum and socially acceptable reactions to children and adults who look "different" failed to stick. I'm sure she'll be thrilled.

Clear? Good. Now you can apologize to my son-no, not me, HIM, you know, the little boy your rudeness insulted? Ya him. There ya go. Good job.

Sincerely,
Me.

This is why I despair of a normal grocery shopping trip. Someone always has to say something about Kai's braces, or the way he walks, or the fact that he falls, or something. It was way worse when he was in casts as a baby-"Did you throw him down the stairs?" "Was there an accident?" "What did you do to him?" Good lord. It's enough to make you want to become a hermit and order your basic supplies off Amazon.

Seriously folks. Ask the kid. Or at least acknowledge that the child is, often, perfectly capable of answering you. Or, you know, don't ask. That works too. 

Ordinary, Every Day Miracle

Dear Taryn,

Today was the day, you know. It finally happened, and I can't believe it's here.

The few shaky steps you've been taking turned into an all out chase around the living room, with you moving confidently, if still wobbly, about on your sturdy little legs as fast as you could go, and your mommy torn between laughter and tears. 

I don't know how to express to you or to anyone else, really, the overwhelming joy seeing you walk brings me. It wasn't too hard for you. Oh, you do it on your toes, and that makes me pause for a minute, but you do it. There were no casts, no endless physical therapy appointments, no x-rays, no frustrated tears as your legs failed again and again-there was just you, learning to do it on your own without the need for modern medical intervention. 

Did you know your feet were the first thing I looked at when you were born? I drove the ultrasound techs nuts while I was pregnant with you-"Feet still okay?" I was paranoid. I still have an irrational fear that I'll wake up one morning and your feet will look like your brother's. 

Your feet are perfect. Your legs are perfect. Everything is straight, strong, and in exactly the shape it should be in. 

That's a miracle.

It's an ordinary, every day miracle.

I don't know which one of you to thank for teaching me that the ordinary, every day child I thought I'd have with your brother is nothing short of a miracle-your brother, whose multiple medical issues taught me to find the beauty in the every day things and the struggle it took to get him to do them, or you, to whom all those things come just as they should, and who has shown me how beautiful the natural process of childhood is.  Perhaps both of you. Definitely both of you.

I call your brother my miracle boy, because he is. He had a lot of odds stacked against him, and he is still here, still fighting, still overcoming every obstacle biology has thrown at him.

You, my love, are my miracle boy, too. We don't know where a lot of your brother's problems came from, but many of them have possible genetic origins. One of them (his blood disorder) is 100% genetic. You have, so far, dodged all of them. You have the same mother, the same father, the same blood flowing through your veins-and yet, you dodged it all. You need glasses, and you walk on your toes, and you have a few sensory issues, but that...that's a clean bill of health, as far as I'm concerned. 

Today, I witnessed a miracle. And ten thousand other families witnessed the same miracle in their own children in their own homes.

How many of them realized it was a miracle?

Love,

Mommy

We're back!

Hooray, internet connection! Whew, I've been going crazy!

Kai is doing better than he was when we first got here. There's only been one more incident of wandering, which very nearly got him hit by a car, but yay for Uncle David and very quick reflexes! He starts school in a couple weeks-our very first IEP meeting is on Thursday! Yikes!

Taryn is walking now. He toe walks, and needs glasses, but other than that, Mr. Byrd is doing great!

There's really not much changed, and yet so much at the same time.

We've had a run of bad luck since we got here. First my car broke down. Then we were robbed. Most recently, Taryn had strep and Kai had scarlet fever. If it's not one thing, man, it's another!

My biggest irritant? Insurance. DCF says they have received a rejection letter from SSI, that Kai no longer receives SSI and is thus ineligible for their health insurance. SSI says they have no idea what DCF is talking about. Meanwhile, I just forked out $32 for amoxicillin and owe over $500 for the ER visit for him. Grrr.

We've been working with CARD services here in Lake County. We love our CARD rep! She's truly a God send. Finally, someone who understands why I do not want Kai on medication at this time and is not trying to change my mind.

Our GFCF diet is going well-it's not as expensive as I'd been lead to believe it would be, AND we've found some yummy recipes we love!

Alrighty, that's my update for now! Be back to report on our IEP meeting on Thursday! Thanks to anyone who has been reading this little blog of mine; it's good to have a place to vent to, whether anyone reads it or not, but I am floored to see people reading it! (We're really not all that interesting!)