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I need balance.

I know what you’re thinking, “Who doesn’t?” It is a common complaint amongst my grown-up friends, especially the parent-friends. How do you find time to be a perfect parent, spouse, employee, and friend all while keeping both your mind and body in perfect condition and health AND keeping up with all the mundane day-to-day expectations of housework, bills, finances, familial obligations, doctor appointments, etc.? That right there is more than enough to fill every single hour of the day, leaving little leftover for sleep. Now throw in a special needs child, any special need, and your life’s plate becomes filled to capacity, perhaps even spilling over onto the floor.

In other words: something’s gotta give.

When we first got Jasmine’s diagnosis, I went through all the stages of grief; denial and depression being the two longest stages for me. Eventually I found my way to acceptance – although I still sometimes visit depression for brief periods, like a vacation! – and that is when I lost my mind.

I threw myself into research about autism, research about treatments, research about research, research about ways to help. I enrolled both of my daughters in research studies at the Kennedy Krieger Institute, and sent away (or called) for information about other research studies going on in our area (like SEED, II). Was it enough? Is there more I can be doing or learning or trying?

And then I remembered something that another parent, a woman who works for our area’s Infants & Toddlers program and that has a son on the spectrum, said to me on Jasmine’s first day of pre-k. You might want to get a pen and write this down.

Jasmine enjoying a piece of toast with Nutella. Mmmmm…..Nutella…..

“It’s not a race.”

It’s such a small thing, but that one line completely changed things for me. I was suddenly reminded that, while it’s good to learn and do as much as I can for my daughters, they’re only little for a short time. I remembered to ENJOY my children. I remembered that my life was still the same one I had prior to the diagnosis, but with a shift in educational priorities. I remembered to breathe.

Now, I’m not saying that I suddenly found a zen-like state of peace and tranquility, or that balance had been restored to The Force. It’s still a daily struggle and something I strive for minute to minute. The difference is that it is no longer on my life’s plate as one more thing I need to do. Instead, I try to think of balance as a guideline, or a template even. Kind of like the now defunct food pyramid. You should eat 4-5 servings of veggies, but occasionally you just need to replace one of those servings with chocolate.

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My name is Trelina. I have two beautiful daughters, 2 years and 3 months, and they are a wonder to behold. My 2-year old, Jasmine, has autism. Before I get into that, let me give you some back story.

My husband, Russ, and I got married in 1995 when I was just 19 and he was 20. From as far back as I can remember, I wanted children, even when I was one myself. Unfortunately, it wasn’t so easy for us.

Russ and I spent years trying to have a baby, 10 to be exact. We went through all the steps and stages – temperature tracking, oral meds, injections, intra-uterin insemination (IUI) and eventually, in-vetro fertilization (IVF). None, and I mean not one single treatment or procedure, worked for us. In the end, we didn’t need all of that intervention. On November 19, 2009, after 10 long, and sometimes heartbreaking, years, our little girl was born.

Jasmine at home in the bouncer, only a few days old.

Jasmine developed, physically and in every other aspect, perfectly normally. She hit all of her milestones, said her first real word (kitty) that wasn’t mama or dada, and even put two and three word sentences together. She was “typical” until around 2…and then, her progress slowed, and then stopped, and then started going backward.

What was happening to our little girl?

We talked to Jasmine’s pediatrician, who told us to call Child Find, who directed us to Infants and Toddlers, Maryland’s early intervention program. They came to the house and said she definitely had a speech delay, and that she qualified for their services. They also scheduled a meeting with a psychologist, because the regression had sent up a red flag.

Denial isn’t ONLY a river in Egypt!

We convinced ourselves that the evaluators were dumb. I mean, seriously, they spent an hour or two with our daughter ONCE! How could they possibly know her? We went ahead and consented to the evaluation by the psychologist, anyway. I think on some level, we knew there was more going on then just her speech delay.

Jasmine was diagnosed with PDD-NOS, which stands for Pervasive Developmental Delay-Not Otherwise Specified. That’s fancy for: generic, high-functioning autism.

What does that mean for Jasmine? What does that mean for us? Well, it means a lot of things. It means, that she can’t express to us what her basic needs are. She can’t tell us when she’s hungry, thirsty, tired, if she feels bad or has a headache, if she’s happy or sad, if her feelings are hurt or if someone is her friend. For us it means spending a lot of time guessing what she needs, wants, or means. For her, it means being frustrated that we don’t get it.

Ultimately though, it doesn’t mean anything. She’s the same fun, pretty, mischievous little girl she was prior to the diagnosis. Our little girl. Our Jasmine.

Here we are, the whole clan.