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.