This Isn't Covered in the Manual

My three year-old woke up at six am and almost immediately started crying. It took me three hours to find out why.

He couldn't stand up.

He tried and tried and failed.

He spent most of the day on the couch, because his legs wouldn't cooperate at all. I.spent my day with a migraine, a screaming eighteen month old, insurance problems, a flooded bathroom, and the soundtrack of a heartbroken three year-old.

This evening I heard him call himself a bad boy, a stupid boy because he couldn't stand. He cried to me "It not fair Mom! I wanna walk too!"

He's right. It's not fair. And I so wish I knew what to say to him but I don't.

There is no parenting book for this. There's not even a section in a parenting book for this. His doctors don't even know what to say-they've never met a child with all the issues he has rolled into one four foot, thirty pound ball of angry little boy.

Because I don't know what else to do, I let him rage. I let him sob his heart out, take his anger out in tears, because I cannot kiss his hurt and make it better. This is an owie I can't reach, the beginning of more to come I'm sure. He's a tough kid but no one is that tough.

There's no manual for this.

I'm starting to think someone needs to write one.

War to win

Insurance.

Every special needs parent's nightmare: the paperwork, the phone calls, the "do you accept it or don't you?" conversations, the co-pays if you have them, etc.

I have been dealing with insurance since eight o'clock this morning.

Specifically, the fact that Kai suddenly doesn't HAVE insurance.

Why, you ask?

Well, here's the jumbled explanation I got:

DCF, who covers the Medicaid system in our area, claims that Kai is supposed to be covered under Social Security.

Social Security, who of course handles Kai's SSI, claims that Kai is supposed to be covered under state Medicaid because he is not on SSDI.

DCF responds with "Well, our records indicate that he is on SSDI."

Kai is not and has never been on SSDI. Someone somewhere screwed up and now my kid is left without insurance until whoever that was gets it together. And you can bet I'm not going to rest until it's fixed.

In the meantime, my son can now not get his medications. So, his albuterol for his nebulizer for when he can't breathe? Gone. His DDAVP for his blood disorder? Gone. His therapy? Nope. Surgery? Nope. New braces or alternatives? Nope. Shots? Nope. Nothing.

So, Mom made a few phone calls. And now I have several people involved in this, including a lawyer willing to take them to court if we need to to get this fixed. I've been fighting since JULY to get this fixed. They gave him insurance for a month. A month. And now, when he's almost out of life-saving medications and is supposed to be having an appointment to set up a badly needed surgery, they yank it from him. Hmmm...nope, don't think so.

'Scuse me folks, looks like I've got a war to win. :-D

Imperfection

Today, I woke up on the wrong side of the bed.

You came running out of your room, all excited and babbling and talking at the top of your lungs. And I yelled at you to be quiet, because Mommy's head hurt and I couldn't stand the noise.

You played together, making all sorts of messes and noise, and I yelled at you to knock it off. Because my head was pounding and I couldn't take the noise.

You ran through the house to your room, whooping the whole way, and I yelled at you to keep it down. Because my head was pounding, and the nose was too much for me.

You pestered me to let you watch Winnie the Pooh on Netflix on the computer, and I let you. Then I yelled at you both because one of you touched a button and shut the computer off and I had to do everything all over again. And then the audio was going faster than the video, and I got irritated with you when you kept asking me what was wrong with your movie, and I yelled at you again. Because I had a headache, and no patience.

You asked me fifteen times in a row (I counted) for juice. And fourteen times, I answered yes. The fifteenth time, I whipped around from the counter where I was pouring  your juice and snapped at you to quit asking me because you could quite plainly see I was in process of getting you your juice. I know exactly why you were doing it-it's something you've always done and probably will always do. It's part of your autism, and I know that. But today, for a moment, I forgot, and I snapped, because I am tired and my head hurts and I don't have any patience.

And then you crawled up onto my lap, put your little arms around my neck and said "Kaikai sorry for being naughty, Mom."

And I realized what message I've been sending you all morning.

You are a 3 year old autistic boy. Your brother is a one and a half year old little boy learning about the world from you, and from me. Neither of you meant to annoy me, or provoke me, or make my pounding head hurt even more.

Yet I was acting like you were the worst children on the planet, like my exhaustion and headache and irritability was all your fault.

I'm sorry, my sweet boys.

You are not naughty. You are good boys who happen to have a mom having a bad day today, and I thoughtlessly took it out on you.

I'm going to let you in on a universal truth about parents: We are not perfect. We do not know everything. We make mistakes. We get crabby and irritable, and we snap at those who don't deserve it.

That doesn't make it okay. Just like when you are having a bad day and you decide to take it out on me or your brother and you get in trouble, Mom shouldn't take it out on you either. And I believe if I'm going to give you consequences when you do it, then I deserve consequences when I do it.

So, my little men, your imperfect, flawed mother is going to give herself a consequence. Beyond apologizing to you both for being crabby to you and yelling at you when I shouldn't have, Mommy is going to go pay the Mom Jar. Remember the jar we started a while ago for when Mom yelled more than she should have? Mom has to pay a dollar when I yell too much. Remember? Well, now Mom's going to pay that jar five dollars-one for each instance this morning when I took my crabbiness, irritability, and headache out on you. And then, when we go to pick up your aunt this afternoon, we're going to take that jar to the store. And you are each going to pick something out for yourselves.

Not because I want to buy your forgiveness for my imperfection, or because I want to bribe you.

Because you deserve to know that you are good boys, and good boys get rewarded for their behavior.

For putting up with my attitude this morning, and for trying to apologize for what you didn't do, you have more than earned a reward.

The Learning Process

You know what the nice thing is about having an entire weekend to devote just to my sweet Byrd? I mean, besides the "only having one kid to handle" thing.

I get to learn things about him I don't notice when he's with his brother.

Like, I know a lot about Kai. A LOT. Kai had two whole years of Mom to himself-I know that kid like the back of my hand. I know that he looks like me, but personalities seem to be inherited, because he has his father's. He's smart, and funny, and very mechanical. And has a temper that would make Hades cringe if you set him off. I know his favorite color is yellow, and that he likes Yoohoo. I know Mater is his favorite Cars character, and he's terrified of Big Bird. I can rattle off his medical history in a minute flat. I could write a book on what I know about my three year old.

Now, of course, this doesn't mean I know nothing about Taryn. I know he's allergic to nuts, and his lungs aren't the greatest and never have been, and that he has to sleep sitting up when he's sick or he can't breathe. I know he loves Thomas the Train, and that he's very mischievous. I know he looks so much like his father, but doesn't act a thing like him. I know his temper could make Hades cringe too, but he doesn't have the hair-trigger like his big brother and father. I know that he has to have his Scout Puppy to sleep, and that if you change his bedtime routine in any way at all, he won't go to bed.

So what have I learned that I didn't know before?

I never knew how much like ME he really is.

I've learned that, while he'll eat chocolate, he'll take fruit over it every time. Just like his mom. I've learned that he really does love to read. Where he won't often sit still for a story with Kai, today he took a book off their shelf and sat on the floor, looking at and studying every page like he was trying to memorize it (never mind that he can't read). He even had the same look of concentration I'm told I have when I'm reading. I've noticed that, though he'll sit in one spot longer than his brother will, like me, he can't stand to sit still-he's always moving somehow. Whether he's tapping his fingers or wiggling his feet or nodding his head, Taryn is never really still.

Yesterday, I took him to the dollar store and bought him a ball. It's just a ball, but that kid is so excited over it. He spent two hours this morning chasing it around the living room, bringing it back to me to have me throw it again and again for him to chase.

And his favorite thing to do, apparently, you ask? Climb up on my lap, put his head on my shoulder, and just watch whatever I'm doing. Whether it's my schoolwork, a blog post, or a movie, he wants to participate with me.

And that floors me. Because Kai never showed much interest in what I was doing. And Taryn...Byrd wants to be with and like his Mommy.

And I never realized that until there was no Kai at home for a day or two to hoard my attention for himself.

I think we really need to work on that. I'm enjoying learning more about my baby.

A Pizza Kind of Night

Oh boy, folks! Wish them luck-my grandparents took Kai for the day! AND they are taking him to a waterfront restaurant! Oh boy. Can anyone say "Nervous wreck!"? Where's that wine? I think I need a glass to calm those pesky nerves...

And after he hangs out with his great grandparents for the day, he's going on a spend the night over to my mom's house (here on referred to lovingly as "Lala") to spend time with Lala, Uncle, and Aunty. If he does well with that, he might get to stay Saturday and come home after church Sunday. Oh boy folks!

Really, where's that wine? OH! In my fridge, that's right ;-)

Meanwhile, I have Mr. Byrd at home, who got spoiled with a new ball today.

Tonight, it's a pizza and wine kind of night. And since it's just Mr. Byrd at home, he gets his favorite pizza: sausage, pepperoni, and romano/parmesan/mozzarella cheese.

Go forth and order pizza for your lovely families, my dears! It's a pizza kind of night. 

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!)

Ten Fingers

Well it's been a few weeks. We get internet on Tuesday so we should be able to post regularly again. I'm not a fan of the phone app for this but today I need to share.
I took my boys to church today. Been going since July 4 weekend. Kai loves his Sunday school class. He's been doing so well.
And then today happened.
He wandered off.
For a terrifying few minutes no one knew where my boy was. Thankfully we were lucky and he was quickly found still in the building...this time.
This time. My God. This time. What about next time? There's bound to be a next time-my boy is a wanderer. When and where will next time be?
Three years ago, I counted ten little fingers and ten little toes. I listened to his heart beat and thanked God he was breathing. Blue as a smurf but breathing.
Today I did it again.
Ten fingers.
Ten toes.
Heartbeat.
Breathing. And this time not blue.
My God. What about next time?

Father's Day in a single mom house

Today is Father's Day. It's a day when we celebrate our fathers, or father figures, a day to thank them for their contributions to our lives, and to honor them for the sacrifices they've made for us throughout our lives.

In my house, it means precisely zip.

As you all are aware, either because you personally know me or because you've visited this blog before, I am a single mother. I'm sure you've picked up on the fact that my children's father is fairly un-involved. At this point, in fact, he hasn't seen nor spoken to our sons in a month and a half, after previously being MIA for two months straight.

I call it revolving door syndrome.

My youngest barely remembers him. In fact, he thinks "Daddy" means picture, a conundrum I ran into with our oldest as well. Kai now remembers Daddy, and those memories are largely unpleasant.

So what happens for Father's Day in a house like ours, where there is basically no father? I grew up with this problem myself. My father wasn't around, and many memories are...unpleasant, at best. So, I'm taking a page out of my mother's book, and recreating what we did.

We have Father Figures Day, or Important Men Day. We call grandfathers and uncles and close male friends and thank them for the role they play in our lives.

From Robbie, who helped teach Kai to throw a ball, to Robert who saw us through all the legal troubles with their father, to my stepdad who has stepped up as a grandfather though he is not married to my mother, to my mother's cousin's husband who has also stepped up as a grandfather to my sons, to my grandfather who loves me, my siblings, cousins, nieces, nephews, and children so very much, we call, send cards, make gifts...

Next year, we will be by our father figures. Next year, we will be two thousand miles on the other side of the country from the father who walked away from them. This year, we're making phone calls and counting the days until we leave. This year, I had to explain to the head start teacher that no, we will not be attending a father's day picnic, because we have no father to take with us. Next year...we'll go, if there is one where we will be.

To all the fathers, the ones who stayed, the ones who love their children even if the relationship with their mother didn't work, to the men who stepped up for children who aren't theirs...Happy Father's Day. You are the type of men I hope my sons will grow up to be.

Are We Done Yet?

Is this week over yet? Are we done yet?

Let's recap, shall we?

Sunday, we helped our neighbor pack up and move. Kai kept falling all over the place, got his finger pinched under the seat of the swing bench, and got smacked in the face when the screen fell out of a second story window.

Monday, it rained. And I had two reasonably crabby children.

Tuesday. Dear God, Tuesday. We started with a meltdown from Kai over wearing pants. He was mad because I gave him jeans to put on. I tried to defuse the situation by giving him sweatpants, but I was too late. Got him calmed down finally, and then he had to use the bathroom. He's at a stage where if he says he needs to go potty, it's because he's five seconds from needing new pants, so I ran up the stairs with him. We made it to the bathroom, but Mom forgot to put the baby gate back up, Taryn tried to follow us, and fell down the stairs. He bit his tongue, chipped his tooth, and had a mild concussion but was otherwise okay. Then, on our walk across the street to the clinic for speech and occupational therapy, the front wheel fell off the stroller. After OT/ST, we walked up the hill to the store, and Kai freaked out over the little coin operated rides, first because I let him go on one, then because I took him off when he flipped out. I got hit, punched, kicked, and bit. On our way home, he got his restraints undone and jumped from the stroller into oncoming traffic (see my earlier post about it). I got hit, kicked, and bit again trying to get him back in the stroller. We got home, he fell asleep at his table, and I carried him to his room. When he woke up, I was making dinner, which was apparently unacceptable to him, because I got hit, kicked, punched, and bit AGAIN. So, I carried him (fighting and screaming the whole way) up to his room. Then, I found a tick in my hair. OH! And Taryn had an allergic reaction to almonds. Because, ya know. Tuesday.

Yesterday was pretty okay. We had a few incidents that involved Kai going upstairs, stealing toys out of his brother's room and make-up and hair ties out of mine, and trying to get into the peroxide, but the day was otherwise okay.

Today. Dear God, today. Taryn got his finger pinched and wouldn't let me hold him. He hit, kicked, bit, and at one point slapped me for moving him away from things he's not supposed to have, or places he's not supposed to be, and even for trying to comfort him after he got hurt. He's into this kick where he won't let me hold him, and that's mildly concerning to me when you tie in the fact that he has a sing-song voice and toe-walks, so we'll be talking to Kai's specialist to see what they think, and meanwhile I'm keeping track of the things that are somewhat concerning to me given Kai's issues (although we don't believe his autism is genetic given what happened when he was born, we don't know that for sure, and it doesn't mean his brother can't have it, although there is a very good chance he's just an odd kiddo or copying his brother-I just don't want to be that mom who refuses to see autism in her younger child even though she's well aware her older child has it, so I'm being cautious; I don't believe he has it, but.). Then, I made dinner, and would anyone like to take a guess as to what Kai did with it? Yup, he threw it at me. Plate and all.

I repeat. Are we done yet?

Murphy's Law

Today.
Today was just...
Okay, you know that whole "If it can go wrong, it will" saying?
Ya, that about covers our day.
So, first off, every Thursday at 10 a.m., we have early childhood special education (ECSE) for Kai-the teacher comes to our house and works with him for an hour or so. Today, the teacher called me-she has the flu and couldn't come. Kai's routine was thrown off, and he flipped out.
Then, I realized I needed to go to Wal Mart on the other side of town. Well, my car doesn't run, so the only way to get there, given that we don't have many people around us, was to walk our merry selves there. So we did. And Kai flipped out because of all the noise and other sensory input. Massive failure.
We get home, and Kai wants to play outside. Okay, fine. Go for it. He gets on our neighbor's bike, and one of our neighbor's kids starts pushing him on it (Kai can't pedal/steer on his own). The poor boy didn't realize this, let go of the bike, Kai didn't turn or peddle, ran directly into a parked car at the end of the sidewalk, and toppled over, bike and all, to the ground. He hit his knee (JUST his knee, no other part of his leg, mind you), and now his ENTIRE LEG, from the knee on down, is swollen to twice its usual size.
THEN, he has a mild allergic reaction to the grass (note to self: REMEMBER BENADRYL).
So, I take him inside for a bath, story, and bedtime. Get him all settled down, and I decide "Fantastic, Taryn went to sleep half an hour ago, Kai's out cold, I'm going to go sit on the porch and talk to the neighbors and have some adult time."
Ya, Kai woke up from a nightmare, came running back outside after two hours of sleep, and flung himself into my lap. He fought, argued, and cried against going to sleep. He'd had a horrible nightmare in which his dad was coming to get him, he couldn't find his mom, and he was afraid Daddy had hurt me. (Although I refuse to go into it right now, this should give you some insight into the wonder that is my children's father.)
It's 12:33 a.m. He's laying on his cot in our living room, because he REFUSED, and I mean freaking screamed bloody murder REFUSED, to set foot in his room. Thomas the Train is on the TV. All the doors and windows are locked, with a ton of stuff crammed in front of the backdoor near the cot, and all the lights are off. He's finally asleep.
Tonight is one of those nights when I thank God for the invention of aspirin and Pepsi.

Envy

I see so many single moms, many of them friends of mine, complaining about how little time their children spend away from them, how often custody orders are changed, ignored, or compromised, how short their monthly child support was this month.

Dears, I have a message for you.

My oldest son is 3 years old, and I can count on one hand the number of times their father has taken him, his brother, or both. Which also means I can count on one hand the number of "breaks" I've gotten. My bank statement can tell you the number of times we have seen financial support from him (never).

Twenty-four hours a day, seven days a week, fifty-two weeks a year, I have my boys. I have full physical and legal custody for reasons we're not going into. Five days a week, I make appointments, bring them to appointments, handle therapists and doctors and schedules and teachers and medications and diets. Every night, I lose sleep because my oldest son has nightterrors and nightmares spawned by things I wish I could rewind the clock for, and because there are nights when he simply will not sleep.

The other day, I made their head start teacher laugh and think I was insane because I informed her 3 a.m. wasn't THAT late for me to get to sleep, and 8 a.m. wasn't THAT early for me to wake up in that circumstance.

I envy that you have set dates you can plan child-free things around, days when you get to sleep in and just be YOU instead of Mom. I envy that you don't have a child who requires so very much. I envy that you don't know what an IEP is, that you have never heard of DDAVP, Factor VIII, melatonin (though how you missed that one, I'll never know), ABA, or any of the other acronyms and terms that are common place in my house.

I envy you because your children's father wants them. I envy that he is jumping onto your post to tell you he will come and get them, because he WANTS to see them. I envy that he pays his child support. I envy that he is there for you and for your kids.

We are both single moms, you and I, yet it is you who does the complaining, you who has the life I wish I had. You have a life free of doctor appointments, of an uncertain future, of a child scarred and broken before his time. My son's doctors have become friends, confidantes, even family. They know us better than our own family does. They have seen more of both my children than their own father. I have never received support of any kind from their father, be it financial or emotional. I envy that you do not know that life.

Would I trade my life and the children I have for a chance at a different ending to my life? No. Life is a story, and this is my story, my children's story, and I wouldn't change it. But that doesn't stop me from looking at your situation through jaded eyes and thinking you a fool for complaining. There are many who would read the story of my life and think me a fool for complaining, for I have the life they wish they had. Take a look at the lives of those around you, dear-yours really isn't that bad.

This is not to say that I think my life is horrible. I am able to honestly say everything my children have came from me, that we made it on our own. I have been privileged to see my children's first steps, hear their first words, watch their successes and their failures, and watch them grow from babies into little men without interruption. I have been given the distinct honor and privilege of watching my oldest son overcome every obstacle thrown his way, and I can claim the joy of having been the primary person to help him do it. There is nothing about my children I do not know, few memories they have that do not in some way contain their mother. I have learned to stand on my own in a way that you have never had to. Many times, I have fallen financially or otherwise, and found a way to pull myself and my children back from the brink of disaster. And I did it on my own. One day, my children will look back on their lives and know that they were loved and cared for, wholly and completely, to the best of my ability, and that I did it without their father.

Much as I often envy your circumstances, I am proud of the memories my children will be able to look back on and the lessons they will have learned.

Do you want the memories your children retain to be the ones of you complaining that they are with you? Do you want the lesson they learn to be that you resented them? 

The Balancing Act

First, we should probably cover that I suffer from insomnia, so very often I write at night when I can't sleep. This is one of those nights.

Today, as stated in my earlier post, Kai's legs didn't want to work for him, and he needed Mommy's comfort. Well, Taryn has reached an age where he's starting to display jealousy when other kids are getting attention from his mommy. All his short little life, attention from Mommy has been a matter of balancing.

Kai gets a lot of attention. There's been endless rounds of doctor appointments, tests, therapies, diagnostic sessions, in-home visits, IFSP meetings, night terrors and nightmares that lead to middle of the night screaming and flailing, meltdowns, outbursts, ER visits with a panicked mommy holding a little boy who tumbled 8 feet to a concrete floor off the top of the basement stairs or some other accident, and so many other things.

Then there's Taryn who, despite 72 hours in NICU at birth and an overnight stay after an apnea episode in November, is perfectly 100% healthy. He tested negative for the genetic issues and so far displays none of the behavioral, psychological, or neurological issues that Kai has. He had a minor issue with his eye which resolved on its own, but has otherwise had no health issues aside from what you'd expect of a baby (teething, colds, and fevers after shots).

Whether or not people realize it, this means that Taryn gets shoveled off to the side a lot. No, I don't ignore him, and no I don't neglect him. But he doesn't get the attention that most younger siblings get.

In a typical household, the baby of the family gets showered with attention, love, affection, and spoiled rotten. The older kids are often left feeling a little pushed to the side and left out on the birth of a new baby. In our household, Taryn entered a world that, for health reasons, had to keep revolving around his big brother. What we do and don't do revolves around what Kai can and can't do. Our diet revolves around what Kai needs for his health (he's got allergies, including a lactose allergy we found out about last week, and we're trying a diet for his autism). Our whole lives revolve around Kai and his medical needs.

This, of course, in no way means that Taryn's needs are not met or are somehow ignored, or that he doesn't have a good relationship with his mom (we're not going to go into their father at this point). There's nothing about my baby that I can't tell you, and to meet him in person, you can clearly see that he is his mommy's boy. It does, however, mean that Taryn's life is not the typical "baby of the house" life that most people picture.

He does have to sacrifice my attention to his brother more often than I'd like. He has had his nights interrupted by his brother's nighttime screams of terror and panic. He has, sadly, been in the line of fire when his brother goes out of control. My top priority during those times is, of course, removing Taryn from a situation where he can get hurt, which usually means that Kai ends up in his room.

All this has also resulted in a balancing act, walking a fine line to ensure that neither of my sweet boys ever feels that they must fight for my attention, even if, at this point in their lives, I have to teach them what it means to get my attention to themselves.

Which brings me back to today.

While Kai was on my lap, crying his eyes out and breaking my heart over how unfair all this has been to him, Taryn was doing his own heart-breaking little act. He was screaming, trying to push his big brother off my lap, and climb up onto me himself. He so badly wanted me at that moment, and it broke my heart to tell him no and put him back down. While I can, and have, hold them both at the same time, during times like that, when Kai is hurting either physically or emotionally (or when Taryn is!), then he needs me and his brother can wait. At this point, being just barely over a year old, Taryn doesn't understand that it's okay to let brother have my attention to himself when he needs it. So, when Kai had calmed down (or, well, passed out), I situated him so he was no longer on my lap, and picked up my baby and held him until he fell asleep. And though this happens in all families (jealousy over one child having Mom or Dad's attention while the other one doesn't), it happens a lot in our family, and for me it seems further aggravated by the fact that it is more so because it is necessary that Kai have my attention so often, and because, unlike many families out there (but not as uncommon as it used to be), there is only one of me. There is no Daddy for Taryn to turn to if I have Kai on my lap or vice versa. I am the sole attention giver, and that, my friends, is one heck of a balancing act.

Lessons for the Little Zebra

Today, Kai's legs gave out and he fell to the ground, smacking his head off a toy wagon. For our house, this is not unusual, despite that Kai is nearly 3 years old. You fully expect a child just learning to walk to fall down like this; a child Kai's age is supposed to be more steady.

Except that he wasn't supposed to walk. Except that he doesn't walk like we do, and his legs aren't physically set up in a "normal" fashion. Everything about my son's legs is wrong. And so he walks, but he trips. He falls. His legs give out because he's done too much and they can take no more. So he collapses. And then he cries, because he is hurt. Because he is frustrated.

Because he is angry. So angry.

Autistic does not mean stupid. Special needs does not mean stupid. And Kai is not stupid. He knows, in his own little 3 year old boy way, that he is different. He knows that his brother's legs do not look like his, and that his brother does not struggle the way he does. He knows that his friends can walk and run and jump and skip for hours on end with no problems, no pain, and he cannot. He knows that he wears braces, and they do not. And it makes him angry.

I do not hide from Kai why he has to see the doctors, the therapists, the specialists. He can tell you that his feet are different (he calls them Monkey George feet, of his own volition, because he likes Curious George and thinks it's cool that his feet look like that). He can tell you that he has autism, which he explains by saying that his head has more room in it. And I love that explanation. It is a wonderful explanation, and so much less demeaning than anything else he could've called it. He can tell you that his blood doesn't work the way it should, and that he bleeds more than other kids, and that sometimes he doesn't breathe right and needs his breathing medicine (as he calls it).

But he's growing up, and he's learning, from the kids at the playground and the moms in the stores, that he is not the same as all the other kids. And he's learned, from the reactions of other people, that different is "bad," that it's not okay. He's learned, just by watching his little brother, that there was another way his life could've gone but didn't.

The most heart-breaking thing I will ever hear is my sweet little boy, crying in frustration and anger on my lap because his legs have once again failed him, is "Why, Mommy?"

I don't know why. I will never know why. And I hate that I cannot answer him. And because I have no answer, all I can do is remind him about the zebra in the book my sister bought him before he was even born, before we even knew just how different he would be, the zebra with no stripes. "Little Zebra is different, too, and God loves her just as much as He loves you."

And now that he is asleep on the couch beside me, the tears of frustration dried on his face and his hands wrapped around my arm, and my baby is asleep upstairs, I can cry my own tears of heartache and sorrow for the life he will never have and the hardships I have not wanted to admit he will face. Although I would not change him, and taking away any of what he goes through would inevitably change him, this is one of the many days I rail at God in my own heart and beg to know why, even though I know I will never get an answer in this life.

Lessons From My Toddler

Before we get into the story, let's dispel a myth real quick about autistic children: They do play. They don't do it like other kids-they're very literal and concrete, as opposed to their NT peers more imaginative and abstract play. Kai loves to play, but he does it in ways that make logical sense. For instance, he likes to play pretend by "trading places" with me. I absolutely love it when he does this, and here's why:

When Kai "trades places" with me, he doesn't imagine how he'd do things if he WERE the parent; he does things the way I do them. He doesn't change a thing-he reacts the same way I do and everything. Today, he wanted to "trade places" with me after we were done cleaning the kitchen and living room.

Today, I learned I yell a lot more than I realized, and way more than I should.

In pretending to be him, I played with his toys and did things that he does, like asking incessant questions and pulling all the books off the shelf. Each time I did something for which Kai himself gets in trouble, he, as "Mommy," yelled at me. I couldn't always understand him, and I know that's because of his speech troubles, but the intent was clear: "Mommy" was mad.

After about an hour or so of this, we "traded places" again and went back to being ourselves. I sat him down, and talked to him as best I could about what today's "trading places" had shown me.

"Kai, do you think Mom yells a lot?" Kai nodded. "Do you think it's not fair that Mom yells a lot?" Kai nodded again. "I think Mom should work on that. What do you think?" "Ya!" "Okay. From now on, Mommy will do her best to set a 5 minute timer before I talk to you when I am getting upset with you. Does that sound like a good idea?" "Ya."

So, starting today, I'm going to set a five minute timer when I'm at my wits end with him. I don't like to yell, and I didn't realize how much I was doing it. I look forward to seeing if this new idea works for us, and to more lessons from my toddler.

On Bullying

Tonight, I saw something very disturbing to me, as a parent, a human, and a parent to an autistic child.

An autistic teenage boy in Australia had his fingers blown off in his backyard by a bomb his "friends" brought to his home. Then these same "friends" took off and left him there. I'm not totally clear on the details (such as how the heck this happened in the first place), but it just gives me cause to worry more.

Kyle is 3. This year, he'll be going to head start. While he is little, his "quirks" might entertain his classmates, possibly scare them from time to time, but shouldn't really bring any harm to him. Five, ten, fifteen years from now, is my child going to be the autistic kid on the news for something like this? 

Bullying is such a huge problem in our schools here in the US. For kids with autism, it can be hard for them to distinguish between when someone is a real friend, and when someone is picking on them-they don't pick up on social cues the way their peers do. It's a belief held by many, and one that I share, that most bullying is motivated by fear-we fear what we don't understand, and we tend to attempt to destroy or otherwise harm what we can't understand. 

This is why it is so important to please, PLEASE, teach your children, nieces, nephews, siblings, grandchildren, friends, whomever, about people like my son, like the teenager in Australia. 

Tell your kids, or whatever children you have any influence over, whether you are their aunt, uncle, grandparent, teacher, whatever, that kids like mine are just like them. They just express themselves differently, and that's okay. It's what makes our world such a beautiful place-we all get to be different. 

Tell them if they see their peer spinning, flapping their hands, rocking, or doing some other odd thing, it's okay. They're just calming themselves, or expressing their feelings, or any other number of things they may not be able to verbally express.

Tell them it's okay to have questions about their peers who are different; it's better to ask their questions than to bully the poor child. 

Tell them that these kids don't always understand the same things they themselves do. Tell them how to help their classmate or whoever it happens to be understand the situation. Teach them discretion, too-our kids might not be able to express it as well, but they do have feelings, and they don't want to be called out for being "weird" anymore than any other child does.

Tell your kids that yes, that kid is different, and no, you don't understand them, and you probably never fully will. You can try, though-these kids live so much in their own worlds, and it's such a beautiful place, if you can just find a way into it. 

Music is my little boy's world, and this is the closest I will ever get to seeing it. Wouldn't it be great if you could help your child see such beauty in children like mine?

Beautiful Boy, Tough as Nails

Beautiful Boy, Tough as Nails

I really wish they'd let me post the actual video, but I can't figure this site out to save my life. But. This is what I chose to do tonight instead of sleeping. I took a picture (if you watch the video, the very last picture the shows up is the one I'm talking about) of Kai today in our backyard, and it just...struck me. It's like looking into a part of his soul, a part of his world he can't share with me, and it inspired this in me. I'm very stage-shy, but my friends and family I have shared this with have encouraged me, so here you are. A song from me to my beautiful boy.

Mother's Day for the single mom

Many mothers receive breakfast in bed, flowers, gifts, etc. on Mother's Day from their children or family members. About two weeks ago or so, I received a necklace and a card from my mom as an early Mother's Day gift (she'd sent it up from FL, but I didn't realize what it was-oops!). My Kai made me a flower for my window in his special ed head start. Other than that, I really don't get anything for Mother's Day.

It's 3 in the afternoon where I am, and here's our day thus far:

We woke up this morning (or, okay, Taryn and I woke up-I have no idea when Kai woke up. He was in his room playing with his LeapPad) around 9. We ate cereal for breakfast, like we do every morning. Taryn had dry cereal. Mom had Raisin Bran. Kai had Cheerios with milk and a tablespoon of French Vanilla coffee cream, like he does every morning, in his green bowl with his black spoon, like he does every morning.

Kai took a short nap (not entirely normal for him, but given that I'm not sure when he woke up, not entirely unusual either) around 12. Taryn went down for his nap not long after.

I made macaroni and cheese and hot dogs for lunch, like I do every Sunday. I put them on the green plate for Kai, and he used another of his black spoons, like he does every day.

Kai had a minor meltdown over the art supplies. Not unusual. He spent 45 minutes freaking out over three crayons and two coloring books.

Kai's run through my house to make sure it's secure, and had a minor freak out over the fact that Mom wants all the doors and windows open today, because it's beautiful, if a wee bit nippy, outside.

We've made art projects. We put the dishes away. We cleaned the kitchen. We went next door and played with his "cousins" (no true relation, just very good friends with their mom and they've decided I'm their aunt and their mother is my kids' aunt). We came home.

It's 3 in the afternoon. And my mother's day is just like every other Sunday of the year.

And it rocks.

Dear You

Dear You,
Yes. You. The gentleman across the street from our house. The one who yelled at my autistic child today. Let's have a conversation, you and I, shall we?
How dare you yell at him? First of all, he's not your child, and there were adults RIGHT THERE. Obviously, if his aunt and I were not yelling at him, he was fine. Second of all, all he was doing was screeching. He wasn't crying, he wasn't in pain, he wasn't ill-he was screeching with joy, because that is how my little boy expresses his excitement and happiness.
Why, you ask?
Because he is autistic. Yes, he can speak. Most of his speech consists of movie and book quotes, or overheard conversations. The little he can speak of his own volition does not cover his emotions-he doesn't understand them. So, he screeches. And he flaps his hands and spins in circles.
Now, let me ask YOU something. Why did you only yell at my child? His cousins were out there, too. They were all just as loud. Why did you only yell at mine? Because he was doing something none of the others were doing? Because you can just tell there's something different about him? Or is it just because he was the smallest, the one least likely to retaliate? Either way, that's despicable.
Do you have any idea how much work has gone into getting him to play "with" the other kids? And he still doesn't truly play with them. He chases after them, and he stands by them and stares at them. He can interact with one child at a time. But the group of all 7 of them? No, he can't do that. So yes, he was standing off to the side, screeching with joy and flapping his hands. And now, because you yelled at him, he thinks he's naughty.
Thank you for upsetting the fragile self-confidence of a disabled child. It is people like you who make life so much more difficult for people like my son. It is people like you who cause the heart ache in my baby's eyes, and therefore endless hours of stress, worry, and meltdowns in my home, and the homes of other families like ours.
I hope you're proud of yourself.
Sincerely,
That little boy's mother

BeatleMania

Quite a few years later, Beatlemania has infected my children.

My one year old was attempting to "shout," while my almost three year old was doing the "twist" part of that particular song.

I wish I knew how to get a video up on here. If you've had a crappy week, the sight of my children trying to do the "Twist and Shout" should put a smile on your face.

When life throws you lemons...

When life throws you lemons, you're supposed to make lemonade.

I ran out of sugar. Sorry, folks.

Today, we had an appointment with Kai's foot doctor, Dr. Gordon. He's a great guy, very interested in getting to know his patients and their families in order to form a better treatment plan. Kai's afraid of him, though-he still remembers the year in casts, and being in the office every other week to have his casts removed (provided his dad didn't let him put a hole through them or play in puddles while wearing them, which necessitated trips to the ER to have them taken off before he got an infection), and the big saw that scared him no matter how they tried to make it fun for him.

Kai's been relapsing really badly lately-walking on the sides of his feet, stumbling, complaining his legs hurt, etc. So, after he was done looking at Kai's feet, I asked Dr. Gordon about it. Apparently, Kai's feet are correcting very easily, but his tibial torsion, the bones in his lower legs, are causing the problems we are currently having. And beyond Ibuprofen, which Kai can't have, and Tylenol, which doesn't help him, there's nothing I can do for him. I've never felt so helpless before.

Premature baby? Sure. Clubbed feet? Dang. Ok. Screwed up bones in his legs? Bring it. Hip issues? Meh. What's one more problem? Bleeding disorder? Got it covered. Autism? Uh...okay... Pain I can't help him with? Lost. Defeated. Helpless. I have never before encountered something with Kai that I can't help him with.

How fitting that it's pouring down rain.