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Nov 18, 2008

Catharsis

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While talking with two friends over ice cream the other night, one said, “You’re like an open book, so when you didn’t talk about what was bothering you on your blog, I knew it had to be bad.” I think the only way I’m going to get past this mental block in my writing is by confronting the issue that’s bugging me so much. And so I’m going to put it out there, or at least as much as I feel comfortable sharing.

As you may know, this has so far been kind of a sucky year for us. Aaron was laid off in June, and had trouble finding employment until just recently, and this job is only a limited-time contract job. We had to go on food stamps for awhile, and drained our savings. I had a relapse of depression. When the job went away, so did health insurance, which means of course we all got sick as soon as our insurance ended. Aaron and I still don’t have insurance. We have one daughter on the autism spectrum who is often difficult to handle, and another with a possible speech delay.

You can imagine how all of this is affecting Aaron and I. We’re stressed, and as a result we’re often short with each other, acting out against each other, and simply disconnected. Most nights were spent sitting on opposite ends of the living room, each lost in a laptop until bedtime. It’s put a strain on our marriage to the point that we nearly lost everything. Details aren’t important, but a lot of hurt has been hurled and the emotional cuts are deep. After the blow up, the big D word has been hanging over our heads for the past couple of weeks.

I don’t think either of us wants a divorce. We both remember why we married in the first place: we’re good together. We compliment each other well – his weaknesses are my strengths, and vice versa. We’ve been together for over ten years now and have weathered a lot of ups and downs. We also both realize that we’re holding onto a lot of bad behavior patterns that probably date back to childhood experiences. (Freud, anyone?)

We’ve discussed these issues with close friends and family – people who know us well and can provide the support we need. We’ve made the decision that we want to keep our marriage, and we’ll enlist the help of a therapist to guide us back to open communication and help us heal our wounds. There’s still a lot of hurt to work through – I know I occasionally feel the urge to throw something at his head – but we both are committed to working on it. It’s not just for the kids, either. While our daughters certainly forced me to think harder about everything, it’s still my decision, and I am considering my own feelings in this decision.

I can’t predict what the future holds for us. I hope he’ll fix whatever it is that has screwed him up, I’ll address my issues, and together we’ll mend the rift in our relationship. It’ll be a long road ahead to regain trust and I can only hope we’re both up for that journey.

This isn’t eloquent at all, and someday I’ll probably look back at this and cringe, but I wanted to get it out in the open. And while I may sound all strong and brave about this, I can tell you I’ve been angry and scared and sad and revengeful, too, along with 1,000 other variants of negative emotions. But around my children and in public I’ve tried to hold it together, telling myself that I’m better than some of those dark emotions and therefore won’t let them get to me.

There’s no shame in admitting a marriage isn’t perfect, and in talking with several friends, both online and in person, I’ve found that I’m certainly not the first person to endure these kinds of problems, and many shared that they have repaired the damage and moved past these bumps in the road. I can only hope for the same results.

But I will now confirm that this has been in many ways the suckiest year yet for me. I hate sounding all “poor me” because I know that there are those going through so much more, and honestly, the martyr role just doesn’t suit me. But this is probably the worst I’ve gone through yet. I’m hoping I’m at my personal rock bottom – can only go up from there, right?

Filed Under: Aaron, big issues, TMI ·


Nov 11, 2008

After The First Time, It’s Not So Hard

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It’s been just over a year since we took Cordy for a developmental screening and started the process that would provide us with words like “autism” “spectrum” and “PDD-NOS”. Going to that screening is probably one of the best things we could have done for Cordy.

So today I’ll admit I was a little nervous when we carried Mira out of the car, through the cold parking lot and into that same developmental screening.

I have absolutely no reason to think Mira has autism, and that wasn’t the purpose of the visit. Instead, it was to evaluate her speech. At nearly 18 months, Mira still can’t say one intelligible word. Well, one intelligible word that someone learning English as a second language would understand.

We’ve come to understand and translate the few mangled words she says. “Aaaiii” is “hi” or “bye” depending on the inflection. “Aaa-ooo” – a phrase which she uses regularly – is “thank you”. There is no “mama” or “dada”. There are no consonants, really. Her speech sounds like someone talking underwater. Other than those few words, everything else is just random babble.

The evaluator began with a test of social skills. Mira happily played along, while also checking out everyone else in the room. Always the socialite. The evaluator asked her to feed a baby doll with a bottle, and with only a little prompting she did so. (Oh yeah, 18 months and already well ahead of her 4 year old sister in that skill.)

Next up was the ever-popular stacking blocks skills test. Mira could stack two, but each try to get to three ended with a crashing tower. Still, for her age that wasn’t bad. She also had a good throwing arm when it came to throwing a ball, but refused to kick a ball.

Finally it was time for the speech test. We were asked several questions, and based on our answers and the evaluator’s experience with Mira, she failed that section of the test. A child this age should have a minimum of 5-10 clearly spoken words, including saying mama or dada. They asked if we wanted her hearing checked, and we agreed. She passed for her right ear, and failed for her left ear. That doesn’t indicate a long-term problem – she’s had a cold recently, and it could mean she has a little fluid in her ear. We’ll take her to the doctor to have that ear checked out.

So with her first F comes a follow-up developmental evaluation and a planning session to determine what, if anything, we will do about this. Honestly, I’m not all that worried. Mira is brilliant, filled with the guile and resourcefulness of James Bond and MacGyver combined. She’s already learned how to push or pull a chair to where she needs it to be in order to obtain things out of her reach. She may not say much yet, but she understands every word said to her. And even if she never says a word, I know she’ll still charm the world with her sly smile and expressive eyes.


It’s really true that you’re more relaxed as a parent the second time around. My second child isn’t following the traditional pattern of development. Her speech is a little delayed – eh, I’ll deal with it. I’ve been through worse.

(And it was amusing to find out that Cordy is still remembered by the screening staff that saw her over a year ago. She had that effect on people, with the screaming and the head banging and the hiding under the table. Somehow I think they’ll be telling stories about her for a long time to come. I only wish we could have brought her today so they could see how far she’s come.)

Filed Under: big issues, Cordy, Mira ·


Oct 23, 2008

Visiting The World Of What Could Have Been

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Cordy had her annual check-up with her pediatrician two days ago, and this time it was with the ped that saw her during her entire first year of life. OK, she’s actually a pediatric nurse practitioner, but typing that out every single time will cramp my fingers, so let’s just call her the ped, OK? This particular ped left the practice due to family issues when Cordy was a little over a year old, and just recently came back to work again. I was thrilled to see she was back, so I made sure to schedule Cordy with her.

(I’ll also add how thankful I am that we have a great pediatric group. They’re not covered by the state insurance that the girls now have, but the office worked out a reduced cost visits deal with us so we wouldn’t have to change peds until we have better insurance again.)

Cordy always has a problem with the doctor’s office. But she has matured a little, so I hoped it wouldn’t be as bad this year. When we were called back, things started off very well – she actually took off her shoes and stepped on the scale to get height/weight measurements with only a little prodding. We once again confirmed that she is maintaining her Amazon status: 43 inches tall, 45 pounds. She’s only 5 inches away from riding most adult roller coasters and sitting in the front seat of a car – and she just turned 4!

But when the nurse led us into the tiny examining room, Cordy’s discomfort with the situation began to get to her. The nurse tried to take her blood pressure, but only got as far as wrapping the cuff around her arm before Cordy started to squirm and beg to take it off. The nurse tried to calm her down, but she only got more upset. At this point, the nurse turned to me and asked rather sharply, “Is there some behavioral issue or condition I should know about?”

I was a little taken aback by the wording, and stuttered out, “Well, yeah…uh…she has autism,” and then quickly added, “but is high-functioning and has made a lot of progress.” Like I needed to justify it or something.

The nurse stepped back and took off the blood pressure cuff. “Ah, well, then I won’t bother with this. Did they take her blood pressure last year?”

“Well, no. They were kind of afraid of her at her appointment last year. But you can see she’s doing much better now.”

The nurse nodded, asked a few more questions and then left. Cordy started to get manic in response to the situation, climbing on the exam table, spinning around to rip the paper, and standing up on the table. The minutes it took for the ped to come in felt like days.

It was great to see this ped again. She is gentle spoken and approaches children slowly with an air of friendliness. I absolutely love how she interacts with children. Cordy didn’t appear threatened as she looked at the ped and said, “Hi doctor, I have a boo-boo on my leg. Can you fix it?” (She has a scratch on her leg.)

As the ped looked through Cordy’s records, she asked us questions about Cordy’s autism, when and where we had evaluations done, and what therapy she currently receives. She paused when she got to Cordy’s growth charts, looking carefully at the head circumference chart and flipping back through various doctors’ notes at the same time.

“Were you aware of how big her head was when she was two?” she asked us. “I mean, her head size was already off the charts at 15 and 18 months, but look here.” She showed us the growth chart, which I already knew by heart. “At two years old, her head size makes a dramatic jump, way off the charts. Did the doctor bring it up at that visit?”

“No.” I replied. The truth is, after this ped left, we saw several different doctors and nurse practitioners after her. It seems like every time I tried to schedule a new appointment for Cordy, I was told that her previous doctor was no longer there, so I’d have to see a new one. I didn’t like the lack of a consistent pediatrician, but most of them seemed nice enough.

“And she wasn’t evaulated until she was nearly three?”

“That’s right. I decided to have her evaluated after Aaron and I became concerned with her behavior.”

She shook her head. “They really dropped the ball on this. If I had seen her head size at two years old, I would have immediately looked into screening for autism and ordered a CT scan to make sure everything was OK. A head circumference that large at that age is always seen as a concern. There is a correlation between larger heads and higher intelligence, but children with autism tend to have larger head sizes – and many have high IQs – and it can be an early indicator that can lead to earlier diagnosis and treatment.”

This bit of news only confirmed what I already knew. I remember Cordy’s well-checks when she was younger, and I remember watching her head circumference continue rising further and further away from that 100th percentile line. I was concerned, and I expressed my concerns, but I was waved off with a laugh and a “big head equals big brains, right?” from the peds at that time. No one seemed concerned, and so I continued to believe that her behavior was a result of inheriting her parents’ stubborn and strong-willed natures. Hindsight is 20/20, of course, but I wish one of her doctors would have noticed or said something.

Cordy resisted for much of the physical exam, as expected. We measured her head circumference again, just to see how much it had changed from her two year measurement. They don’t have growth charts that track head size past three years old, but her measurement was very close to her two year measurement. The ped told us that since it’s been two years without much of a change in circumference, and since Cordy has shown progress at school in her behavior, she wouldn’t recommend a CT scan now. But she added that she’s really disappointed that no one else paid attention to the signs earlier.

I’m thankful that Cordy is a healthy child who rarely gets sick. And Mira is much the same way. They both have the occasional cold or stomach bug, but it doesn’t slow them down much. And I’m glad to have Cordy’s old ped back, and I think Mira will start seeing her too. I couldn’t help but notice at Mira’s 15 month well-check that her head circumference has gone up and is now hovering just under the 100th percentile mark, taunting us with the possibility of jumping over that line at the next visit.

I don’t see any signs of autism in Mira, though, and I hope none will develop. However, she is being evaluated in two weeks for a possible speech delay – at nearly 17 months, she still can’t fully say a single word. She tries hard, but words come out as a strange warped version of what she’s trying to say. The musicality of a word is there, but few of the sounds come close to matching. I probably wouldn’t be concerned if it wasn’t for the fact that I remember Cordy talking up a storm and starting to count at this age. I brought up the issue at her last well-check and her ped recommended an evaluation after hearing my worries.

I guess the lesson from all of this is that even pediatricians are fallible. The best advocate for your child is yourself – you know your child better than anyone else. Ask lots of questions, and don’t be afraid to push an issue. If I had pushed the issue two years ago, it’s possible Cordy could have started therapy sooner and be at a higher level of progress than she currently is.

Filed Under: Autism, being a mom, big issues, Cordy, Mira, people who don't suck ·


Oct 16, 2008

Down On Your Luck vs. Real Poverty

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Despite the events of the past four months, I still know that no matter how bad we had it during that time, it still wasn’t that bad. We still had our house, we still had food to eat, and we had resources to turn to when we needed them. We have been poor during this time, but we were not living in true poverty. (Yes, our income is beneath the “federal poverty line” but it has only been for a short period.) We also have good educations, making it easier for us to get past any bump in the road. Some never have those chances.

Whatever the reason, there are millions of people on this planet who are living in poverty, wondering each day if they’ll get a single meal, or where they might sleep tonight. Our situation of having no job has been tough, but not nearly as tough as what others live through every single day.

We have recently started cleaning out our closets, shelves, and garage to purge our house of more junk. Some of it was sold in a garage sale a few weeks ago. The rest of it is going to Goodwill, so that others may benefit from it in some way. This period of unemployment has helped me to more clearly see the poverty in this world, and how we all need to do what we can to help.

It sickens me to think that while those making more than $250,000 a year (and the rest of us) in the US are worrying if they’ll have more taxes levied against them with the new president, we have children in this country who are going to bed hungry at night. You know what? Raise my damn taxes. If that money will go to truly help end poverty – providing food, shelter and healthcare for those who need it – I’m all for giving more.

Because let’s face it – those of us who spend any amount of time on the internet are not truly poor. We have leisure time to spend surfing the web, which means we probably have access to food and someplace stable to live. If you were asked to give just $5 to help others, you could probably find it.

So if you ever find yourself feeling thankful for all you have, reward that thankfulness by doing some task, however small it may be, to help others.

To read some inspiring posts about poverty, please visit Blog Action Day.

Filed Under: big issues ·


Oct 14, 2008

See A Penny, Pick It Up

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It seems that the bad luck that has been an unwanted house guest for oh-so-long is tiring of the scenery and packing its bags. I don’t know if it was lots of positive thinking, searching for four-leaf clover, picking up every penny I saw, or throwing said pennies into fountains and making wishes, but things have turned around in the past few days.

At first I thought we would never escape the dark cloud hanging over our heads. On Friday I received a call from one of my freelance gigs (the one that paid the best) and my producer told me I was no longer needed. That was a huge blow, and while I tried to not take it personally since it seems everyone is cutting back, I still took it personally. I’m trying to look at it as one task off my overfilled plate, and therefore a blessing in disguise.

On Sunday we attended the Walk Now for Autism event. Our team raised over $500. The walk had thousands of people there, and it felt nice to be surrounded by those who understood if Cordy started acting out. There was also a resource fair at the event, and I talked to several service providers who we may be contacting soon to get Cordy signed up for further therapy.

When we were approved for additional therapy funding back in May, I was handed a huge list of providers – hundreds of providers – with no additional information about them. Which approach do they use? What are their specialties? I was told I’d have to call everyone on that list and interview each one if I wanted that kind of information. The autism walk gave me the chance to see some of the providers who specialize in autism treatments in person. It was like a mini-interview session, and I found several that I plan to follow up with.

Waiting in line at the bouncy castle

At the starting line of the walk

And then yesterday morning there was a flurry of phone calls, and by 10am Aaron was employed again. He has a 2-3 month contract with a company in Cincinnati, but he will be working from home for most of the project.

The down side is that it’s only a short-term contract, but if he does well the contracting company will hopefully find another position for him. The pay is enough that we’ll go off of all assistance (woo-hoo!), and it looks like we might have enough to buy COBRA insurance for those 2-3 months. Even if the company can’t find him another project, it still buys us more time for him to look for other jobs.

I’m hoping it’ll also help drive away some of our irritation with each other. It’s not that we’re having actual problems per se, but when you’re around your spouse all the time, and you have to carefully examine each expense and interrogate the other as to why we needed another pair of pants for Mira or a ticket to a horror movie marathon, well, you quickly get tired of each other. We’re in each other’s way all day long.

So now he’ll disappear upstairs to work for a few hours a day, and then I’ll take over the office for a few hours when he’s done. And hopefully that will kill some of our irritation. If that doesn’t work, I’m lobbying to bring back Family Double Dare. Dumping green slime on your spouse could be therapeutic.

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Filed Under: Aaron, Autism, big issues, daily life, the J-O-B ·