Five Things to Know When You Know Things Ain’t Right

When my baby was two weeks old, we noticed that her eyes scanned back and forth like a metronome. Being the loving and thoughtful parents that we were, we made jokes about her “Kit Kat Clock eyes” and just sort of ignored it for about a week. She seemed to do it before she fell asleep, but it looked weird, so we scheduled an appointment with her pediatrician, who dismissed our concerns. “She doesn’t seem to have anything wrong, but I’ll refer you to a pediatric opthamologist if it will make you happy…” Yeah, as a matter of fact it would, asshole.

Turns out the receptionist at the opthamologist’s office first diagnosed my daughter because her congenital vision disorder was just THAT fucking obvious.

“Your daughter has ocular albinism, right?”
“Ummm, I don’t know. I’ve never heard of that before.”

Well, she did and I had, but sometimes when you have a parent with a disability, you don’t always use the proper medical term. I knew my dad couldn’t see well; he mentioned albinism, but I didn’t care what was wrong with him; he was my dad, and he was cool. That’s all I cared about.

Unlike my dear father, my daughter had a longer list of disorders; the albinism just presented itself first. The intellectual disability and autism diagnoses came a few years later.

This first diagnosis started my family down a road of early intervention programs and myriad medical appointments and therapies that made our collective lives both hectic and interesting. Now, all of her issues are developmental, meaning that the urgency of a lifesaving procedure was never in the mix. This also meant that there was not always a clear-cut protocol for what to do after the diagnosis. If you are in a situation where you think something may be amiss with your little miss or mister, fear not, be proactive! You may not be able to control what is brewing in your kid’s gooey stuff, but here are five things that you can do.

1. Get a Real Diagnosis

If you notice something isn’t right, or you suspect that something isn’t right, get the cheapest, easiest testing possible. Your pediatrician may roll his/her eyes, but seriously, fuck them. They aren’t your friends. Who cares what they think of you? And besides, you are allowed a few parental freak-out moments. So take action, but don’t make an appointment with a pricey specialist until you have seen a pediatrician or a school psychologist or someone a little more affordable.  Plus, your “hunch” may be wrong. Kids are just kinda weird sometimes. As a bonus, developmental diagnostics are usually pretty easy. Many developmental issues are diagnosed using (seemingly highly subjective) questionnaires, so it’s a matter of filling out a paper and presto! You now are the proud parents of a kid with ADHD! Expect the best but prepare for the worst and all of that happy horse shit. If it turns out that there appears to be a problem, Houston, then gather all of the developmental information you can get about you and your kid and move to number 2.

2. Get Another Real Diagnosis

Dealing with a developmental issue can be daunting, a major time suck and possibly a lifelong job, so you don’t want to piss around wondering if you have the right diagnosis. Take lots of notes, and try to avoid going to these appointments solo. If you can, even bring an extra person to keep an eye on your kiddo so you can CHEW THE DOCTOR’S EAR OFF with questions. It is helpful to keep a list of at what age your baby met all of her milestones as you will be asked by each and every specialist that you may see the exact same questions about your baby’s development. Jesus! Wasn’t Google supposed to take care of coordinating all of this medical crap? Anyway, this is the part when you’ll be super glad if you live in a major metropolitan area, because if you live in an area with fewer than a million people, you may be traveling. I know some of you will have already researched the “best” doctor in your kid’s issue and want to travel thousands of miles for the very best treatment, and to those parents I can only say More Power to Ya. If you can afford the best, then have at it. I, for one, would rather go long and settle for the most accessible and closest specialists.

3. Work Toward Securing Treatment

Fire in the Belly time. Time to get the Eye of the Tiger and about 12 other euphemisms for getting down to business. You are going to need all you got to research and fund treatment for your kid. Try everything you wish but always get someone else to pay for it whenever possible. Most states have Medicaid programs that cover some or all of the diagnostic testing without an income eligibility requirement. Seriously, I know how awesome and self sufficient we all are, but civil societies take care of kids. Care and treatment for children isn’t just for rich people, and the more we demand that, the better for all of us. So, you may have to drag your well-heeled ass down to the social service office to apply for assistance in the form of whatever programs that your city/county/state/country provides. Get ready to meet humanity and bring a snack (and be ready to wait wait wait).

Do not expect a roadmap for these services, especially for treatment of developmental delays. Be ready to be creative and ask for help. Find support groups with people who know what you are going through and ask tons of questions. Cry to folks who know; be tolerant of those who don’t.

4. Learn the Art of Creative Listening

The second you have a kid with an issue, everyone turns into motherfucking Oprah. You can bet that you will hear about “breakthrough treatments” and “miracle cures” from far superior parents who before would never look twice at you.  You MAY want to take this opportunity to educate these people on the real issues of your child’s disorder, but for the most part I would advise you to smile and nod. Again, you don’t need to be friends with everyone. Hell, you don’t even have to be nice to anyone! Thank them for their concern and decide to ignore them, or you can decide to look into whatever bullshit they were talking about. This is something that drives some parents nuts. Thankfully, I was always so sleep deprived with my kid (she didn’t sleep much for about 12 years) that I couldn’t comprehend what ANYONE said to me.

In general, it’s always easier to raise someone else’s kids, to live someone else’s life, and in reality, there are those who would be happy to have yours. The world would be a much less stressful place if we all took care of our own shit, but I digress.

5. Serenity Now!

I know you want to be the best parent ever, but c’mon! You’ve been charged with more than the average bear—you need to recharge now and then. I have to remind myself on a regular basis that I am physically fine. My daughter has a serious issue, but I am fine. I have to remember that I am the same person and that my life is the same as it ever was. Now, you may be more enlightened than me and have the ability to separate yourself from your kids’ problems, and if you can, I bow to your ability. I can do that NOW, but it took years of therapy….years. I also get out of the house a lot, and I found many trusted folks to help me care for my kid, and I strongly urge you to do so as well. Many parents of kids with disabilities will isolate themselves in an effort to protect their kids. It’s unhealthy at best.

There are many lovely people in this world. Sure there are a lot of employees of hospitals and social service organizations who look like they definitely spend as much time as they can calculating exactly how long they have until they retire. But since that first diagnostic appointment way back in 1994, I’ve met far more people who care about my daughter and have helped me be a better parent and a better person. Those of us with special needs kids are afforded a very unique opportunity to experience this. So even when things aren’t right, they’re not so bad.