That B-Word I’ve Been Waiting to Hear

frumsWith the start of middle school for Evan came the option to enroll in band.

I’ve been waiting for it. Ready for it. Of course, it ultimately came down to what Evan wanted to do, but I secretly hoped he would. And he did. He chose percussion–drums. Of course all band parents hope their child does not choose drums, and many nix it. I wasn’t afraid in the slightest. The kid wants to play drums. So be it.

The start of this new thing has not been uneventful. First, I had to get an instrument for him. We went right away. I was going to just buy him a snare drum, which is what the kids always started out with when I was in school. Nope. They have to have a bell kit, complete with a drum practice pad, a xylophone-type instrument, a stand, mallets, and sticks. And because this was Evan, I knew he would likely quit in a couple of months when he realizes that I intend to make him practice. So I opted to rent to start us out. So they hand me this form to complete. The rental fee is a whopping $22 per month. Nothing to break the bank. So I fill this form out. It consisted of my name, employer, social security number, address, employer’s address, how long, etc. Then she hands me this other sheet–5 references. Okay, I guess, just to ensure I’m not going to skip town with an instrument. Of course my phone was dead, holding within its lifeless body all of my contacts and their numbers. I had to dig deep to come up with 5 people whose addresses and phone numbers I actually knew. So I finish and start to get my wallet out to pay the woman for the first month and the book that Evan needs. Not so fast. Next she hands me a sheet of paper with more detailed information–my last 3 employers, my occupation, highest level of education. Now, mind you, all of this is duplicated for John. Then she needs my driver’s license. At one point, I looked at her and asked her how much it would cost to just pay for the damned thing. I know a snare is only a few hundred. Nope, this is over $1000 worth of stuff. So I am just waiting for her to ask me to bend over for the body cavity search while she runs my credit. But she doesn’t. Instead, I reach for my wallet out of my purse, now ready to pay her. I never dreamed. They tried to decline me!!!! I have purchased 2 new cars in the past few years. I can walk into my bank and ask for a great deal of money on credit and they will give it to me. I have multiple college degrees, a good income, and decent time on my job. Why in the hell would they deny me for something that only costs $22/ month? Well, because I have a medical bill that went to collections that I am still making payments on–for Evan’s autism diagnosis. It was thousands of dollars, and I just didn’t have the funds to pay it in full at the time. So I have been paying $250/ month for it and still owe about 2.5 more months of these payments. That is why. The good credit didn’t matter. Now if I were trying to buy a $100,000 car or something, I could see them being that particular, but this? So I was about to call my bank and arrange to just buy the thing when the woman came back and told me that it was okay, that she called their credit department, who told her to apologize to me and put it through. But then I thought about what this meant.

We have decent credit–decent enough to get credit when we need it. The only real mark against us, aside from that bill, is that we don’t own our home. That is intentional because of my education. I have no idea where I am going to be 6 months from now, so it is a convenience to just rent. I have a decent middle class income, own late model cars that I pay for on time. What about all of the people out there who earn less, have lots of medical bills, or are just pieces of crap and don’t pay? Those kids are deprived the opportunity to play an instrument, to learn music? So that leads to the next thing.

Music education is not a luxury. I know because I was a student of music. I wanted to play an instrument and, tired of buying expensive instruments for kids who would ultimately quit, my mom was hip to the game and made me choose from one our family already owned. I got my sister’s flute. And I was good at it. I played for years, with the school teachers always recommending private lessons. Mom got those for me through the local music store for a whopping $8 per hour. But within a year, I quickly outgrew those. She had to find someone from the Cincinnati Conservatory of Music to teach me–someone who was good. Those got more expensive, but Mom paid the $72  per hour each week. And I got good at it.  Good enough to win awards, have articles in the paper about competitions I won, honors I received. By the time I was in high school, Mom was ill. They had to file bankruptcy on medical bills. And I outgrew my sister’s flute. It was time for a professional model. The one that worked best was over $4000, and my parents simply could not do it. Of course I couldn’t either. Knowing I wanted to go on to major in music, the band director at my high school cosigned for the huge purchase and I got a job at McDonald’s to pay the payments directly to him so he ensured they were paid. And I paid the last payment right before I left for college. Mom, continued to be my biggest fan, though. She followed me around to all of the concerts, competitions, solos, honor bands and orchestras in which I was invited to play. She would always have to sit in the back with her oxygen tank, and she would cry as I would play my solos. At home, when I would practice, she would listen through the air vents, knowing that I would get nervous and stop if I knew she was listening, She doesn’t know that I knew.

So I went to college. They went to great lengths to break me down, knowing that in the music world, only the toughest survive. I rolled with it, but it was emotionally draining to take something I loved so much and make it into so much work. And Mom got even sicker. She couldn’t be there anymore. And then she passed away. And I would try to play and would come across sheet music for a piece she had wanted me to learn or for a song she loved to hear me play, and I would break down, unable to play through the tears. I eventually gave up. When I fell on financially hard times in my early twenties, I sold that expensive flute. I have not touched one since. But the lessons I learned–about finding what you love, what you are good at, and throwing yourself into it; about hard work in exchange for goals reached, about the bonding power of music, about the value of a support system–I took all of these with me. They are still here and still influence me daily. I want the same for Evan. I want the same for Evan’s classmates. This is why it made me so sad that some children may not be able to participate because of their parents.

Evan may never be a rock god, a virtuoso, a prodigy when it comes to music. But I will encourage him. I will be there. I will remind him of the value of it all. My mom served as a great role model in that.

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Not Ready

28809_1470325484751_4630848_nI remember the day like it was yesterday. It was just yesterday, right?

We tell new parents all of the time that they shouldn’t blink, that it will all go way too fast. Evan started middle school a couple of weeks ago. That hit me hard. Not as hard as the day I found myself sobbing in the school gym as he turned and looked at me as he was walking away from me and toward his kindergarten teacher. I remember the clothes he wore: khaki shorts with a brown leather/ orange grosgrain belt coordinated perfectly with his orange polo from Baby Gap. He was small. He was my baby. He still is.

But then we had another one. I wrote countless times how I didn’t think I could ever love another like I love Ev. And I remember kvetching that I couldn’t possibly be pregnant again, that it was a cruel joke with the worst possible timing. I had no idea that the child would completely consume me. That he would become very much a part of my very being. I could tell you I love him, but those words seem so paltry and inadequate. If you cut me, I would hemorrhage Zachary.

So today happened. It’s a day I’ve done before, many years ago. Except Evan was starting kindergarten, not preschool. But somehow, this is worse. This is so much worse. He’s only a year younger than Evan was when he started kindergarten, but still. He really is my baby. And I just watched him. I saw the spark of excitement in his eyes, the amazement that that big yellow school bus was stopping for him this time. I watched his chubby baby fist grasp the rail and climb onto the first step of that bus, guided by his father while I tried to hold it together. That first step, incidentally, was almost waist height on him. The bus driver motioned me onto the bus, smiling in understanding and reminding John that moms just do this while the assistant helped Zach to his seat. And he turned and looked back at me as I blew him a kiss, all smiles and happiness at his new milestone reached. At independence and new days filled with macaroni art and learning to sing new songs. At things that would no longer involve me.

I turned and got off the bus and they pulled away. I turned back to watch him go as my heart splintered. Because I worry that these strangers entrusted with his well-being won’t understand how amazing he is. They don’t know how he almost wasn’t here, that he is a connoisseur of chocolate milk, that “bobberries” are really strawberries and are his favorite fruit,  that he simply must have an Eskimo kiss before his nap. But also because, having done this about 8 years ago, I know. I know that Tomorrow, he will be starting middle school. He’ll have earbuds in his ears and not want to cuddle. He will be too cool for me. I will become Mom, no longer Mommy.A Mom is, after all, different from a Mommy. Moms ensure you do your homework and take care of you when you are sick. Mommies kiss boo-boos to make them better, read bedtime stories, are given the gift of crayon scribbles that may as well be fine art. It will be Tomorrow.I know it from experience.

I’m not ready for Tomorrow. And I know that is where Today leads.

I’m just not ready.
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This Could’ve Been My Kid: Toddler Boy Called A Faggot At WalMart For Wearing Pink Headband

http://www.mommyish.com/2013/07/31/toddler-boy-called-a-faggot-at-walmart-for-wearing-pink-headband/

Anyone remember Evan and his affinity for all things pink and sparkly? I didn’t really care, but I was worried for him simply because of people like the man in this article. Because people are ridiculous. And dumb. And virtually intolerant of anyone or thing different from themselves.

I remember those days. I remember having to tell my son that, while there was nothing wrong with him wearing or choosing whatever he liked, that there were people in the world who didn’t understand that and would be mean and cruel to him as a result of his different tastes. That didn’t make it okay, but as his mother, I felt it was my duty to protect him from any potential threat. I would rather he learned that lesson gently from me at home as opposed to the way this innocent little boy learned. So he expressed himself in the house, but not out in public.

Right or wrong, it was such a story as the one above that motivated me.

If I reflect back on that time in his childhood, I feel guilty. His personal preferences have always reflected his quirky, spunky nature. He is not the same as everyone else. He knows it, we know it, everyone knows it. He may have outgrown the pink, sparkly phase, but he has shown other differences. That’s fine with us. His unabashed exhibition of who he is for all who care to get to know him reflect a comfort in his own skin that many of us only hope to have at some point in our lives. I hope that time all those years ago didn’t quelch any part of that within him.

If it did, I am no better than the oaf in this story.

We all have our heads crammed full of what we should be/ think/say/do…
You’re a girl. You can’t throw a ball.
You live in the city, so you have no values.
You’re rich, so you must not know what it means to work.
You’re a man. You aren’t worth shit if you don’t solely support your family.
What do you mean, you can’t cook? Aren’t you a real woman?
You’re poor so you must be lazy.
You’re straight, so you hate homosexuality. You’re gay, so you’re a deviant.

We are who we are. That’s the world I want for my kids, in a nutshell. A toddler in the midst of discovering he is separate from his parents can wear a damned headband-pink, green, sequined, lacy-if it makes him happy. Evan can be obsessed with history instead of XBox. We can choose for my husband to stay home if it works for us. And, yes I suck at cooking anything aside from 3 specialty dishes, but I can rock out some corporate finance while keeping you alive, so that’s okay, right?

Our preferences don’t make us better or worse people. We are not less simply because we have our own strengths and weaknesses that are distinct from the person sitting next to us.

Someone needs to teach that man a lesson.

Bitchypants

What I Said I Would Never Do and Then Did Anyway

Kid-With-Cell-PhoneKids and cellphones. It drives me crazy. I work with someone who literally bought their two-year-old an iPhone. No, I’m not kidding. I am being completely serious. I didn’t have a cell until a couple of years ago. It just wasn’t a need of mine. When it became a need, I went and got one. But a little kid? Call me crazy, but when you are too young to be left alone for a second, when you are chauffeured around to every destination, go no places on your own, you have no need to be reachable at all hours and in any locale. And besides,  the only person who should need that type of contact with you at that age had better be a parent, and aren’t you with one of them?

Read: “No, Evan, you CANNOT have a cell phone!”

I did, however, let him have a Facebook account and email, with the password known to me and the username set as the email address, so every stinkin’ time he gets a like, a comment, a message, a friend request, I know about it. It’s a pain for me, as my phone vibrates non-stop almost, but it is necessary to keep him safe from himself and from others who prey on kids. And as a result of these other internet uses, he inherited an old smartphone of ours that no longer has service. He could still use the wi-fi functionality at home to email his new friends. (A long story that will have to be told at another time.)

So this has been going on for some time now. Fast forward to now. Well, to a couple of days ago. He is currently at his grandfather’s house for his annual summer visit, when he gets to fly planes and boat and jet-ski to his heart’s content. See evidence here:evan fliesSo this past Saturday, he calls. John answers the phone. I can hear the worry in John’s voice. He’s asking what is wrong. Then I see John roll his eyes, say, “Oh my God, talk to your mother!” as he thrusts the phone at me. Evan is completely hysterical. I can barely understand him. I get him calmed down and then it starts to become clearer: the phone he was using–my old one–finally bit the dust. He is 4 hours away. He cannot email his friends or anything, and he is going to be down there for awhile due to some health issues John is having. (Oh my GOD, that makes it sound like John has the plague–he doesn’t. You’ll understand later.) I assure him we will find a solution, hang up the phone and go to work on this little issue.

I could do any of the following:

A. An iPod Touch. It has wi-fi and messaging capabilities. Maybe Grandpa could take Evan to get one and I could reimburse him. Nope, they’re too expensive, so I can’t ask someone to do that for us.

B. Send Grandpa to get Evan a cheap pre-paid cell and reimburse him for that. Ehhh. Wouldn’t that give Evan a long-distance phone number?

C. Call our cell carrier and see if they can sell me a cheap smartphone to have shipped down there to Evan. Hmmmm. And that is when it happened.

They tell me that I have a family plan, and that if I add a line, they are giving away free iPhone 4S’s.

Shit.

And that, since we have unlimited talk and text, Evan could call and text however much he liked and it wouldn’t run up our bill.

Double Shit.

And that they have this service called Smart Limits that allows us, as his parents, to limit what he is allowed to do on his line. For example, he would only be able to make purchases with a credit card and not simply by billing to the cell bill. We could limit who he calls, who calls him, how much data he can use (the other sure-fire way for me to one day get a $800 cell bill in the mail!).

Triple Shit. Evan got a cell phone. 

An iPhone at that. Which may have been free to me, but is still a $500 phone. And I don’t think it was a bad decision. He’s starting middle school in the fall. He’s still a little awkward, but he’s blossoming socially. He’s making friends. Just before he left, he was outside playing with some friends and lost track of time because nobody wears a watch anymore and none of the kids had phones. He’s getting to the age where he will be old enough to drop off at the mall to hang with friends or be permitted to have a house key and let himself  in after school. Not quite yet, but soon. It was time.

Of course, he could completely make a fool out of me. I wired money down to him with orders that, as soon as the phone arrives, he is to take it the local AT&T store and buy an OtterBox for the damned thing. This will minimize the chance that it will be destroyed on accident. Given how badly he has begged me for this for a couple of years, it isn’t likely that he will destroy it on purpose. And the smart peeps at the phone company have limited his ability to drive me to financial ruin with the thing. So I have moved forward with calculated risk.

And besides, he is growing. How is he going to prove he can be responsible without the opportunity to prove it?

The Smallest One

393096_10201215393853547_1875360026_nZachary is three whole years old. This happened last month. Remember how he wouldn’t talk? Well, now he doesn’t stop. And it amazes me to hear what he has to say. All of that time he was silent, he was absorbing so much so that now that he is completely verbal, he can show us that he was learning all along. He was listening.

Yesterday, while going to eat at a local restaurant, we were occupying him with some coloring while we waited on our food to come to the table. He asked for a crayon I was holding. I reached out to hand him the one in my hand. “Not that one, Mommy. The blue one!” He was pointing to the blue crayon laying on the table, but John and I had the same reaction: to stare, mouths agape, at this kid. As if to say, “When did he learn his colors???” Well, of course he learned colors because, from the time he was about 3 or 4 months old, I have included the color of everything in my sentences. “Here’s your cup, Zachy. The cup is red!”, or “Look at that tree’s green  leaves!”

And he learned empathy and how to be concerned for others. You could try this one for yourself. All you have to do is act like you have hurt yourself–stub a toe, get a papercut–and he drops what he is doing, stops in his tracks, to come to you and look at you with with those big green eyes and ask if you are okay. It is so cute that, I must admit, I have said “Ouch!” on more than one occasion just to see him in action.

I’m trying to convey how much he has grown and I am struggling here. He is just his own little person. I could spend all day just watching him. He has his own tastes and preferences, sense of humor, ways of doing things. The wobble of toddlerhood has been replaced with confident running, jumping, climbing, playing. For his third birthday, his little green tricycle was replaced with a green bicycle.

The shadows of dimples that were once there on his little cheeks have been replaced with real dimples. We knew they were there. 253495_10201210419249185_1369711929_nWhere Evan was always temperamental and a little introverted, Zach is the opposite. He is rambunctious. A true boys’s boy. He says “Hi” and “Bye” to everyone he sees, which can make leaving a grocery store or any other outing quite the experience. (Oh, there’s a bag boy 5 checkout lanes to whom we didn’t say goodbye! Let’s take care of that now!) When he hear’s a song on the radio he likes, he has complete confidence to just belt it out. Our current favorite is this:

*Note that the radio plays the edited version and since Zach associates all bridges with crossing the Ohio River, his version involves crashing a car into the river, not a bridge. But it is still hilarious to hear him sing it.

And yes, he’s starting preschool in August. And it breaks my heart because it has gone so quickly.

Using His Words

Ferguson-2Zach speaks.

Not gibberish. Not “word approximations” where he makes up random syllables to represent things he frequently encounters in his world.

He uses his words.

“Give Mommy hugs.” “Go night-night.” “Turn lights off.” Not long phrases. He will probably, according to his speech therapist, continue to have a speech delay, but she expects it to be completely resolved by kindergarten. He will qualify for preschool, because my state stops early intervention services at 3 years of age. This is also the age they stop adjusting his developmental age for his prematurity. In January, we will meet to discuss his preschool options.

Preschool. Zachy. Completely unreal.

But he uses his words. And well enough that I feel comfortable starting other things with him, like potty-training, though I completely forget how to do that. I did it once. I’ll figure it out again.

And his voice is such a gift. Each word he says the sweetest sound I have ever heard. He is showing us, once again, the wonder that is the world. My favorite word of all, “Look!”, shows us that he sees something new, something interesting, that he is learning. Everyday, learning more and more.

He still mixes up some sounds. If you ask him his name, he says, “Yack”. His age? “Doo”. I can live with this. He is two. He is not going to be a keynote speaker right now. He may never be. But when you have a child with apraxia, you appreciate each word that is understood, that does not need to be translated. Gone are the days where he could not tell us what he wants or needs, where he would point or grunt, or rattle off indecipherable gibberish that we could not understand, leading to frustration and tears from all involved.

For right now, we are thrilled. He is growing. He is strong and healthy. He is making progress. He is overcoming. He is using his words.

On Laughter and Sadness, Relief and Distress

Autism_Awareness_by_thisfleshavenged

They called. After being on a waiting list since September of 2011, they called and we started the process to finally find out what is going on with Evan. It started with an appointment with a developmental pediatrician. A very long appointment. And it was so frustrating that I ended up sobbing for the second half of the 4-hour interview. How do you replay every little issue a child has had since birth, through age 11, into one appointment? And of course I totally had unrealistic expectations for the appointment. I knew how the process would work way in advance, that this was just the start, but still—maybe it is the mom in me—I clung to this appointment like our lives depended on it. It was my lifeline.

Because Evan has gotten worse. He seems to be deteriorating before our eyes. In truth, the differences between him and his peers is probably just becoming more noticeable with age. But still, this is how it seems from so…up close.

So the doc did his job. He gave me some assessments to complete. Written ones. One for ADHD and another for autism spectrum disorders, which confirmed my gut feelings all along. He doesn’t just have ADHD. There is more going on. Simple as that. But what? Turns out that Evan met as much criteria for an ASD as he did for ADHD. So referrals were made and appointments were scheduled. Speech, OT, psych, IQ evaluations over the coming months. Today…Well, today was Day 1. But first some background information.

Since we have suspected Asperger’s for Evan for some time now, I have really been paying attention. And suddenly, as we are meeting with and speaking with these experts at a major pediatric research institution, and they are asking questions about Evan. About early childhood, how he has developed, how the problems have surfaced. And everything…everything…is making sense. How, when he was little, Evan would flip over toy cars and trucks and just play with the wheels. As he got older, he did the same with his tricycle, bike….How Evan never could sleep well. I remember one time in particular that John and I had not slept in over a week, and we were so sickly-looking that Ev’s pediatrician gave him a powerful sedative for 2 nights, giving us orders to give it to him at bedtime and we were to go to sleep. All of his independence. I thought he was just really smart, and he is, but the independence at such a young age…He still has trouble with his shoelaces, yet he has been able to operate a computer since he was 3. And then there is the freak-out we get when he is tickled, played with. We found out yesterday that he feels like he has to have his feet on the ground. And he likes deep pressure. Thus the embarrassing resurrection of the outgrown clothes that are waaaaaay too small.

So his first day of evaluations came. First, the ADOS, or Autism Diagnostic Observation Schedule. A speech-language pathologist did this with him. It was 3.5 hours long, and I had no participation other than to sit in a separate room and watch on a video monitor with a set of headphones. It was so surreal to watch my baby, and while we have witnessed his behavior first-hand, there are just some things you block out. Watching him on that screen, I was able to see him how an uninterested third party might. And I saw.

I saw the little boy who barely made eye contact. I saw the mix-up of literal and implied meanings—I didn’t even realize he did this. I saw the kid who, despite a huge vocabulary and intellect to match, could not keep basic emotions separate. And then the part that literally left me gasping like the wind had been knocked out of me: she was talking to him about friends. Well, even though I hate it, I know Evan has no friends. So I am saddened to hear him describe his classmates. First the girls, then when the therapist asked him if he has any who are boys, he started to name the boys in his class. She asked him to describe the difference between classmates and friends and he could not. She asked him what made these boys his friends and he named one boy in his class and said he is his friend because he doesn’t bully him as much as the other boys. And the blood rushed to my head. My ears began to hum and tears stung my eyes. This. This is the part that hurts so badly.

So on we went. Next eval was occupational therapy. The therapist didn’t know what he was being evaluated for in order to keep an unbiased opinion. And after reading his history, she asked me about Asperger’s. And after telling her I didn’t think she would find anything other than handwriting and a couple of other fine motor issues, I was stunned. He has no coordination. He couldn’t catch or toss a ball with any accuracy whatsoever, had very little by way of dexterity, and after assessment, seems to have major sensory issues, She gave him some stiff putty to play with and he came alive, kneading it and working it with his fingers the entire time. She gave him an exercise ball to bounce on and for the first time in a long time, he looked content. He looked happy. Animated. He looked relieved.

I have been both amazed and, well, wrecked a little if I am being honest. Every little question, every little nagging thought you have as a mother…knowing something is not right, but nor being able to point it out specifically. Well, over a decade’s worth of that is coming to a conclusion, so it is like a weight has been lifted. And then there is the knowledge: will he ever have friends who appreciate all of the amazing gifts he has? Will he have a date to the prom? Goals for his future? Can we overcome this, too?

Today, I got info in the mail to get him registered with the Autism Treatment Network. That one killed a little bit. I carefully filled in his name, his city and date of birth underneath the letterhead with the dreaded A-word that can invoke terror in the hear of any parent. And I thought back to the day he was born. The hopes we have held just for him. The memories of smiles and laughter, of amazement at his ability. And I knew, suddenly. Just like that, I knew that, just like when he was a baby and we helped him through colic or reflux, or formula intolerances, just like I helped him when he had an ear infection or a scraped knee. I will help him through this. I will champion for him. He is my baby. He is still perfect.