Once more now, with should-haves

More than two years. That's how long it has taken me to come to somewhat peaceful terms with Fly and his PDD-NOS diagnosis. Pervasive Development Disorder Not Otherwise Specified. So, he has autism but it doesn't fit the typical autism mold. So mild, the diagnosing physician told JP and me, that in a few years no one would probably know.

I think Fly is at that point now. After finding out about multiple food allergies (typical of people on the spectrum), learning from a DAN doctor, behavior therapy, two years of going to occupational therapy twice a week and trying different tactics with Fly to see what works -- here we are.

We were told not to tell anyone because he would probably outgrow it. A couple other doctors we worked with later said they didn't think he would outgrow his main issues, but some of his challenges could be overcome.

Depending on which day you would see Fly, you would think he is a regular five-year-old boy or a kid with severe ADHD who has vocal stims and meltdowns and no impulse control.

And we don't medicate.

And so we live on the edge, literally. We aren't special-needs enough for the special needs community, but we aren't normal enough for the rest of the world.

A very frustrating edge to live on.

I have learned so much the past two years. I wish I could have blogged about our journey. But when I came to write, I just couldn't do it.

It was too painful.

And I'm pretty sure I've lost most of my sense of humor.

Having a child with Fly's challenges was so consuming, and yet I couldn't write about it. (And that doctor had said not to go around telling people because he is so mild...so I couldn't talk about it, either. Most of my real-life friends don't even know.) I have been frank and honest on this blog, and not being able to share what was really going on ... it shut part of me down.

I wish I could have blogged about the shame I felt when Fly was kicked out of soccer. When he was told not to come back to preschool. When finally, after a year of potty training, he could go on his own after treating him for a yeast infection in his digestive tract that we didn't know about. When I was judged by other parents for his public meltdowns. When he hit or bit other children. When he went through testing. Again. And again. When we found a lovely new school for him. When we started seeing breakthroughs. When friends started avoiding us. When a psychologist told us she couldn't see us any more unless we gave Fly medication -- which we didn't. When I felt I myself needed medication to help me deal with it all. When I just lost it. So many stories I could have, and should have, shared.

And then there is the Junebug. Sweet, easygoing almost-three-year-old Bug who has had to put up with so much. He continues to bear the brunt of Fly's wrath and controlling ways, and doesn't get his share of attention or time. But he is happy and smart, and tough, and I look out for what's best for him despite having a brother with challenges.

This blog started out about raising a baby boy, and then another, and helping them grow the best I could. I don't know where to go from here, both with my life and with this blog. In life, Fly is set to go to a regular kindergarten in August after a summer at social skills day camp, and I am so afraid the kindergarten won't be able to handle him and turn him away. Bug will go to preschool a couple days a week, leaving me wondering "What's next" for my life as well. In this blog, well, I have a couple other blogs I am known for but where I don't write so honestly -- but I will always love this first blog and the good memories I have making my first blog friends and sharing stories with other moms.

So I may or may not blog here again.

Fly's story started out here as a baby yet to be born, and I know his story will continue despite any challenges or diagnosis or trouble he gets into. And I plan to be there with him, helping him and helping to heal him.

Challenges

Sometimes, I have trouble deciding if something is BS or if it's for real.

Like now. My current dilemma started in early January, when Fly went back to preschool after the Christmas break. But really, I guess, it started long before then.

His preschool teacher said by halfway through the school year, most kids have settled into the routine and what's expected of them. But not Fly. He doesn't want to participate in class. He knocks things on the floor on purpose. He won't sit down for story time. He hits his classmates. He goes to a religious school, and they won't take him to chapel anymore unless I go too because they can't handle him and he is too disruptive for the other kids. The teacher suggested he get tested by a free program run by the county school board. "Parent to parent," she said, "I would want to know if he has a developmental delay."

Fly? Developmentally delayed? The child who knows more about trains than anyone I know. Who keeps asking to learn to play the violin. Who uses four-syllable words on a regular basis.

And yet ... I recognized his impulsive and often out-of-control behavior.

Warily and wearily, I scheduled a testing appointment.

I also got great advice via Twitter from Jodifur, who had similar school conferences with her son. On her recommendation, I also got an appointment for Fly with a developmental pediatrician.

I even had food allergy tests run for Fly.

These appointments have taken us on a bumpy, frustrating, time-consuming and expensive ride through the first quarter of this year to where we are now. Which, well, frankly, I don't know where exactly we are.

The school board testing, in my opinion, was a joke, and I told the preschool that. They thought that was "interesting" and said they wanted to "chat more" about why I was so unimpressed with the program.

The developmental pediatrician was more helpful but very stern and very expensive. But at least, that route led us to occupational therapy, where Fly has been diagnosed with a sensory processing or sensory integration disorder and low muscle tone -- reasons, or excuses, for why he rarely remains still, why he can't hold a crayon and color for more than three seconds, and why he's so uncoordinated that he is always running into things, tripping on his own feet and can't pedal a tricycle yet.

I get that Fly "has challenges." I have blogged before about his intense, high-need, high-energy personality, which he has had since he was a baby. It's not uncommon for people to tell me, "Boy, I thought my kid had a lot of energy, but yours has even more!" This afternoon after quiet time, Fly broke a toy and then hit the Bug and me with it. Twice. Even after timeout for the first time hitting. Then he hit JP at the dinner table, where he can't ever sit still. He can't follow multi-part directions. He asks the same questions repeatedly. He will argue with you and say or do the opposite thing you say just for the sake of doing so. I could go on.

But, big deal. Lots of kids -- normal, healthy kids -- could be described in these same ways, right?

As a mama, I am overwhelmed and bewildered at this array of doctors and therapists that has come into our lives.

I wonder how much of this is just Fly being an active three-year-old boy and how much is a real medical or developmental problem. Obviously, there are areas he needs to work on in the classroom and at home, but I can't believe that Fly is unique in having to work on certain areas -- surely every child has strengths and weaknesses, like adults. Part of me wants to think all the "experts" know what they are talking about, but part of me thinks it's a lot of mumbo-jumbo.

Does having a sensory processing diagnosis mean his teachers will be more understanding now that there is a reason, a label, attached to his seeming bad behavior? Will it be a great early-intervention tool to getting him on track and ready for kindergarten?

Or does a diagnosis mean that educators are too quick to put a stamp on a child and herd him through "the system" to get him to conform? Does it mean that as a parent I've fallen prey to some new-fangled notion that therapists have come up with for excusing bad or weird behavior?

I haven't decided which.

In any case, JP and I want Fly to do well, and the occupational therapy can't be bad for him, so we will try this out for a while and see how it goes. The therapist says after a few sessions, she will come up with things I can do with Fly at home that will help him -- she called it a "sensory diet" -- not food, but activities that will help him. She is also doing exercises that help him focus and help strengthen his muscles. I don't get how a kid who is constantly moving, who plays on the playground and takes soccer class has low muscle tone.

I don't get a lot of this.

But I want Fly to succeed and feel good about himself. I know beyond his sometimes almost-manic behavior and despite the days when he wants to hit everyone, Fly still has a kind and generous heart. He has a spooky-good memory and likes telling jokes (badly). He likes animals and can identify several species of birds. He enjoys music and asks me to sing songs with him, or play specific songs for him. He likes to give hugs. And get hugs.

To get right down to it, he's worth fighting for.

Beauty and art

So it's the end of the year, and I miss my blog here. I miss sinking into a chair during naptime and catching up with my good old friends. I miss doing things because I enjoy them, as it seems my life has become dominated by a to-do list and practicality. And for some reason, Fly lately has been telling me, "I miss you."

Maybe that's why recently I've been craving beauty and art.



And I'd like a side of order.

I look around my house and see the clutter of toys and Christmas packages and stuff JP has left out because he, too, has become stretched and straightening up isn't a priority around our house.

Not beautiful.

I grab a handful of baby fat at my waist and fear that jowls are sneaking up on me.

Not beautiful.

I wake up groggy after five hours of broken sleep, and brace myself for what new three-year-old defiance Fly will hurl at me this day.

Not beautiful.

But I remind myself that this is beauty.



And this is art.



Maybe order will come in time, but until then I will just try to go back to my mantra, "A mama needs to have more fun."

Wishing you a more fun-filled 2010!

Blurry

Life is going by in a blur.



I know I am participating in it -- and time often creeps slowly toward naptime -- but it still seems life is taking us for a ride instead of us being in control.

It sometimes seems like too much work and not enough play time. But when we get down to the business of playing, we really play.



Fly is starting to differentiate among kids his age and prefer some over others -- he is making friends. Preschool is going great. His favorite subject? Digging in the sand.

The Bug is suddenly four months old. He is already teething, as his big brother Fly got his first teeth at four months. He takes everything in and rarely complains. It was about this time last year we knew he was on his way.

Now there are just two months left in the year, so I'm trying to hold onto every day because I know they will never be this small again and I don't want my memories to get blurry.



Scenic Route stamp by Scrap Girls, Refresh frame by Scrap Girls, Scrapping Sisters word art


Halloween Show kit by Digiscrapbooking.ch, Digi-Designs by Nicole frame

I'd like to say I've been a bad blogger because I'm spending my time being a better mother. But that's not true.

OK, it's true that I'm trying to be a better mother. And it's true that Fly's third-birthday party knocked the wind out of me. (I'm such a rookie at this birthday-party business. I invited everyone I know who has a child. It was such a huge party that I was jokingly calling it the social event of the season for our county's preschoolers.) And it's true that after the party, Fly got sick and passed the cold onto Junebug, and when I got it, I almost wished I would just die already. We all still have a yucky cough.

But I am a bad blogger too.

Anyway, I know no one wants to hear me ramble about stupid excuses, so here are some photos, which, if anyone is still coming to this blog looking for new content, is all you probably wanted to see anyway.

Fly's preschool photo


Um, yeah.

Cuteness



One of Bug's first really big smiles



More matching outfits



Fly at his birthday party

Two months

When you're two months old, you don't have a lot of control over your life. People like to do this kind of thing to you:


(My friend took this photo of me and the babe.)

And there's that wild creature who's always being loud and accidentally-on-purpose bumping into a tiny person. On a rare occasion, he sits down for a picosecond.


(Another photo by the fab Jennifer.)

You also have no control over what you're wearing.



Or how you're worn.


(Experimenting with a mei tai -- made by the lovely and beautiful Bloggy Mama -- for the first time.)

But in general, at two months, life is pretty good.

P-p-preschool!

Everyone else does it, and I'm giving in to peer pressure: the standard photo-by-the-front-door picture of a kid on his first day of school.

Fly! In preschool!

Just a few weeks shy of his 3rd birthday, Fly is going to school two days a week -- six hours total, really. His first day went perfectly. In fact, while I was handing off his snack bag and diapers (still not potty trained, ugh) with one of the teachers by the door to his room, he slipped in without me noticing. And then it was too late for me to take another picture or even say goodbye. Something about no clingy parents inside the school.

One day, you're carrying a child everywhere you go, and the next he's ambling into a preschool room without you even noticing. Gah! I didn't get to savor the moment.

But I didn't cry. No, I'm not emotional over the thought of Fly growing up and moving on. (Although he better not love his teacher more. I already consider her The Other Woman.) Maybe I'm a weird mother, but I am excited for him. And a little jealous. After looking at the daily schedule the teacher handed out, detailing everything from story time to water table play to music class to bathroom breaks right down to the minute, I kind of wish it was me going to preschool. It's a great gig. I want to play all day with super-cute little people!

Oh. Wait. I guess I kind of do that already. Except, you know, laundry and meal planning and dealing with home repairs and changing diapers and stuff.

While Fly is in school, I'll be playing with my little Junebug. Because soon enough, he'll be the one trotting off to The Other Woman when I'm not looking.

(Find me over at my new blog.)