every little thing…is okay

Jim and I were in a new doctor’s office the other day answering an hour and a half interview about Jordan.  I’ve lost count of how many doctors we’ve had these conversations with at this point. Much less than some people I know, but more than I care to think about…six, eight? I don’t know.  We get to the part where they ask about his birth.

“Was it an exceptionally stressful time?” Is there really part of the last 15 years that wasn’t exceptionally stressful? I can’t remember.

“Was it a typical birth?” As typical as a planned C-Section is, yah.

“Was there any concerns immediately after delivery?”  Well, his initial APGAR scores were low and it took forever for him to cry, but within a couple of minutes no one was worried anymore.

Jim chimes in.  It wasn’t that long, babe. It was all less than a minute; it just seemed really long.

He and the doc share a knowing glance…

Well, here we are again. Me trying to come up with reasons that force it all to make sense.  I could see on the doctor’s face, this isn’t new to him. I’m sure moms everywhere are trying to put their finger on the WHY, even after we know there’s no way of knowing the why, or maybe the why isn’t a why but more like 50 whys. Or there’s no why at all.

But I want a why. I want to blame something. someone. even if that someone is me, that’s okay.  I get tired and I want answers, so then I can finally fix it. I’m a fixer.  It’s really the worst thing you can be when you have a kid who isn’t always typical, because…there’s just no fixing some things.  And then you feel guilty for even thinking that your perfectly amazing child would ever need fixing.  And so the cycle goes.

These past few weeks have been a little more challenging than normal.  Not with Jordan; he’s actually excelling, I think.  It’s been challenging just within our family as a whole. Finances are tight, as they are this time of year: recovering from the holidays, paying for sports fees and gear, a huge car repair bill – the usual stuff.  But the usual stuff sometimes feels more stifling when you’re a one income family.

Years ago, we made this decision. We will sacrifice financially so that I can be there for both of the kids in the needs that are unique to them.  There have been times when I’ve gone back to work when we really needed it, or when we thought the kids were ready, but then realized maybe they weren’t. I’ve owned and run successful businesses from home, but it always ends with us feeling like the kids are taking a back seat and that I need to focus on them.  It’s hard – finding that balance. It’s hard for everyone.  I think, and I’ve heard from others too, it’s even harder when your family is a little more than typical.

Studies say the average family with a special needs kid spends $17,000 more per year than other families. Co-Pays and prescriptions alone add up to more than half of that in our family (never mind deductibles that I don’t even want to think about.) Then you have therapy expenses, special purchases, and the truck loads of kinetic sand and silly putty I’m constantly searching for, and…you get it.  I’d say $17k is the understatement of the year.  Sometimes I just have to acknowledge these things to keep perspective.  Sometimes I just need to tell myself it’s okay.

It’s okay that I don’t bring in $60k+ per year like most of the women my age and with my background.  It’s not time for that.  It’s okay that sometimes money gets tight and the only explanation I have for that is that “shit gets hard sometimes and we just have to get through it.”  It’s okay to feel suffocated by all of the needs and demands and “I DON’T FUCKING KNOW RIGHT NOWs.”  It’s okay.

It’s okay to not have the answers.  It’s okay to need to cry when no one is looking for no reason other than I can’t stop the tears from falling.  It’s okay to be sitting in a therapist’s office answering intake questions about my son and suddenly realize everyone in the room knows that I’m probably the one that most needs the therapy.

This is being mom to someone that needs more than the “average” kid. Whatever that means. And we’re all okay, or at least we will be after a hot bath and a good cry.

 

 

 

 

week one.

Jordan has been on a minimum dose of a common stimulant treatment for ADHD for one full week. Jim and I just keep looking at each other shaking our heads in disbelief. The child we see is such a dramatic difference than the child we are accustomed to I can’t even tell you. The positive changes are really remarkable. The side effects are actually very minimal to this point.

I decided to keep a log of all of this for two reasons. One, I want to be able to look back on this for us and for whatever use we will have. Two, once we are comfortable with where we are in this process and how Jordan is doing, I want to be able to share our journey with other moms and dads and caregivers. As we sat in our IEP meeting today, one of the counselors told me I should keep notes so I can share one day with others. I just giggled. She doesn’t know about my compulsive writing of all the details. Ha.

So, as I said, week one has been mostly euphoric for Jim and I. The doc told us we should see results of the meds within around three to five days, but that some effects could be seen right away on day one. So we were hopeful that we’d see some little something on day one. We didn’t expect it, but we said we thought it’d be great if there was something.

I gave him his first dose, told him of all the things I wanted him to pay attention to in his body while he was at school, and I put him on the bus. Just like any other day. HA! Then I emailed the teacher, his primary counselor and anyone else with a pulse at the school and asked them to be watching him closely. “Watch for tics and increased stuttering. Watch for fits and aggression. And for God’s sake please let me know if he looks like his pulse is racing.” Or some version of this.

Jim stayed close to home and worked on some projects. I think he mostly just knew I was going to drive myself nuts all day worrying and wondering. I walked to the bus to meet the kids and waited anxiously for him to do his usual descent from the steps and run my way screaming and wildlike. He sauntered down, strolled my way and gave me a nonchalant “Hey mom, what’s up?”

What the WHAT?!?! Who was this child?

He spent the better part of the last week being himself, but a little more chill and a lot more “I can’t put my finger on it but something/almost everything about that child is different in a very good way.”

We were around 5 weeks worth of homework behind. It’s not that we don’t work on homework with him every night, it’s that it takes so long we just can’t keep up with the class. This week, we did one week’s worth of work each night. Yes. We are now caught up. And he wanted to do homework. He asked to do it. He was proud of his work and he mostly understood what was going on. It honestly felt nothing short of miraculous.

The downside? He can’t sleep as well. At least the first few nights he really couldn’t fall asleep for hours. It took its toll on him. He has been taking Melatonin to help him fall asleep for a few years. We made sure with the doc that this would still be okay and continued as usual. Night one I had to triple his dose to get him anywhere close to falling asleep. No biggie- he wasn’t taking much to start with. It’s still a healthy level. The last few nights, it hasn’t taken as much.

The last few days have had a few changes. He’s still pretty level. The only difference I’m seeing is more of a “sensitivity.” He’s a little crankier than usual. He has had a couple of meltdowns when he doesn’t get his way, which wasn’t happening the first few days of meds. It is pretty typical from before meds though. I almost feel like his body/brain are getting used to the meds and they aren’t working as well. But, he also has a cold and it’s been a very long week of working double time on homework catch-up and his body getting used to this new normal. So I could be wrong. It could be anything. That’s why the doc has asked us to wait a month before re-evaluating his dosage. I’m sure there’ll be plenty of ups and downs.

So far, I’m glad it’s mostly ups! No side effects except the decrease in appetite (we are not concerned about this one!) and the sleep thing. So far, so good.

the decision.

{This post was written a few weeks ago and is the first in a line of “we choose meds” posts that I’ve been writing since. ¬†We wanted to get through the initial stages of medication privately before we told anyone. Without spoiling the ending ūüėČ I can tell you our life is forever, fabulously changed.}

 

This time last ¬†year, as we sat down with the professionals at Jordan’s school and learned their take on his “setbacks,” the first words out of my mouth were, “We will pursue all lines of help possible, but we will not be drugging our kid so don’t even bother going there.”

Last night, at 5:45 pm we sat in our pediatrician’s office and said, “Yes. ¬†We feel like it’s time to look into the medications that could help him.” ¬†It’s as simple as that. ¬†It’s time.

I won’t be publishing this post for quite a while, if ever, but I do want to write it today. ¬†It’s important I write it now both for me and so that eventually, if I do decide to share this, it will be the way I actually felt all the way through it. ¬†Today, as he takes his first 18 mg dose and heads out the door for school, I feel like a nervous wreck. ¬†He knows he’s taking special medicine that might help him slow his engine down and make it easier to listen to his teacher. ¬†He also knows it might make him feel funny, which Mommy needs to know about right away. ¬†He knows his heart might feel like it’s beating really fast and he needs to tell his teacher.

What he doesn’t know, is that Mommy is praying her face off that this special medicine only gives him all the benefits and none of the side effects. ¬†Is that too much to ask? ¬†I honestly don’t think so. ¬†I don’t want him to get a nervous tic or to begin stuttering worse than he ever has. ¬†And that’s just the beginning. ¬†I don’t want him to have heart¬†palpitations¬†or fits of aggression. ¬†I just want him to have a good day.

I just want him to be able to sit in his chair and complete a worksheet that kids half his age can do without a problem. ¬†I want him to be able to sit on the floor with the rest of his friends during carpet time rather than in a chair next to the teacher to keep him from rolling around on the floor. ¬†I want him to walk down the hallway rather than jump and fall and roll down the hallway. ¬†I want him to learn to read and understand that numbers are more than just a symbol on the page but they mean the same thing as the blocks he has stacked up in front of him. ¬†These may seem like silly things to care about. ¬†But they aren’t.

They aren’t silly because that’s what’s important to the seven year old giant child that crawls up on my lap and tells me that today he wants to put the plastic bag on his head and stop breathing because he’s stupid. ¬†There’s nothing silly about feeling so different and so stupid than everyone else around you that you just want to give up.

And that’s why, at 5:45 pm I sat across from our doctor and told him that yes, we are ready. We choose meds. ¬†Not because I’m a lazy parent that just wants the meds to turn my kid into the perfect child without me doing any of the work. ¬†Not because I want to appease the teachers that expect too much of little boys these days and don’t let them be “boys.” Because in 2013 society expects seven year old little boys to be able to read and count to 100. ¬†And 85% of seven year old boys do know how to do that without any problem. ¬†And trust me, seven year old boys know if they can’t do something that “everyone else” can do, and it makes them feel stupid and for some of them, it makes them depressed at times.

We aren’t telling anyone other than his teachers about our decision right now. ¬†Someday we will, but he certainly doesn’t need the added pressure of being in a fishbowl as it gets figured out right now. It’s time he’s just allowed to be a seven year old little boy.

 

when lightning strikes

Follow me on a little journey if you will…

A beautiful, well-organized, and lovely woman with a smoking hot body is on a relaxing stroll in the sunshine through the park. She has her perfectly behaved children and adorable puppy with her. The love of her life is off working at his perfect job and enjoying all that life has to offer. All of a sudden, storm clouds roll in, thunder booms in the distance, a downpour begins and the woman is suddenly struck by lightning.

Replace the woman above with an average looking, occasionally-organized, paunchy mom in sweatpants; the perfect children with unusually maniacal deviants; and the husband with a typically stressed and exhausted dad and you’ve got our life a year ago. There we were, walking through life with its usual stresses, but mostly just living a wonderful existence as a family. Then one day, lightning struck- figuratively, not literally. Don’t worry.

If you used to be a regular reader of this blog, you’ll know that aside from the occasional “OMG I have to get this out of my head or I’m going to burst” posts about my children, I have been mostly MIA for the past year. My profanity-filled, snarky and sarcastic bitching about our silly life have pretty much dried up. I have recently received a few emails asking me “where the hell are you woman? What is going on?!?” Thanks to those of you that have wondered about me and asked. That means a lot!

Everything is fine at our Improper home! It’s just that, well…I got struck by lightning! This time last year, we began to realize that Jordan was having some learning issues at school. We were working hard with him to keep him caught up, but it became more and more obvious that more than just the “little boy wiggles” and distractions were keeping him from keeping up. In kindergarten. You’ve read this before, I won’t go into it again. Jordan has SPD, ADHD and an alphabet soup (as other moms so aptly put it) of issues going on that hinder his learning and behavior.

For a lot of people, this is no big deal. For me, it was truly like getting struck by lightning. I’ve been feeling the “after-shock” for a year. We’ve all been relearning how we live life. It’s not a big deal. Except it really is a big deal, for me at least. I’m a perfectionist. I need life to be perfect. When life isn’t perfect, someone freaks out. That someone is usually me. So basically, I’m always freaking out inside. Because when the hell is life ever perfect?

That’s not actually totally true. We’ve faced a lot of obstacles in our life together, Jimmie and I. Life has obviously never been perfect. We’ve faced all the usual situations- having babies, losing jobs and careers, being so poor you don’t even want to know, making questionable-at-best decisions, facing some pretty serious health conditions, being poor again, you get it. For me, none of that compared to having a life-altering situation to deal with in one of my kids. All I know is, thank God it wasn’t more of a health concern. At the time, I would have had a hard time handling it.

All of my days that were previously a leisurely time spent making our home and browsing blogs and socializing and being your average spoiled homemaker are no more. I have become obsessed with finding solutions to this problem and that; running to therapy appointments; reading books, blogs and articles on how to help with this thing and that thing, working with the school and teachers and counselors on what will best help which part of that piece of the puzzle and so on, ad nauseam. I’m obsessed with giving my son his best chance at life and a successful future while at the same time giving both my kids (and their dad) the most normal and rewarding home and school and social life I can. Basically, what I’m telling you here, is that my brain has been focused on one thing and one thing only for the most part- fixing this (unfixable) problem.

Most recently, I’ve been on burn-out. The “throw my hands up in the air, nothing is working, no one can fix my kid, I give up” type of burn out. It’s stupid. So, here I am to find balance. I want to help my kid. I will keep running to this thing and that and reading and researching. But I will also make time for me and friends and my husband and fun. And I will make time and space in my head for writing. Because it is, as usual, how I get the crazy out.

You’re welcome to walk away from this blog right now and never look back. It might actually be recommended. I know it won’t always be funny. There will be too much mommy talk and not enough cocktails and bunco. If that’s not okay then I understand. I won’t be mad. Thanks for being around for the journey up until now.

 

 

20130123-141112.jpg