There’s no feeling like the one you get in your pediatrician’s office when they tell you your child isn’t like their peers in some way. Maybe it’s the growth chart that says so. Maybe it’s the autism screening. Maybe it’s a hearing or vision test or your child isn’t walking or talking and they should be by now. Regardless of how you end up learning that your child has special needs, there’s no pamphlet they hand out with tips for the newly-minted special needs parent. Here are a few things from my experience that I think you should know:
1. Get connected with your state services.
When it was clear that Lucy was delayed in both speech and motor skills, our pediatrician referred us to private therapists. Fortunately, our family has good health insurance and we were able to afford the minimal therapy that was recommended at the time. It wasn’t until we’d been doing private therapy for awhile that a friend of mine told me about the ECI (Early Childhood Intervention) program through the state of Texas. This intervention program provides assessment and therapy services to any child up to the age of three, at little or no cost to the family. Every state has a program like this. They can also refer you into special public preschool programs where your child will receive services and accommodation for their special needs. This was absolutely of the most value to me, and despite going to the pediatrician repeatedly for both sick and well-checks, it was never mentioned to us.
2. Get connected with other parents.
If there’s no manual for parenting, there DEFINITELY is no manual for parenting + special needs. The item above is the perfect example. I’d never have known about ECI if it weren’t for another mom. You can learn lots of useful things from other special needs parents. Answers to questions you didn’t even know you were supposed to ask. So when you’re in the waiting room at therapy, or the specialist’s office or on that preschool field trip, smile at another mom or dad and introduce yourself. These conversations can take you to important places, and at the very least, build your support community. Nobody knows about your challenges like they do.
3. Your diagnosis is a journey, not an event.
This might be tough to swallow, but sometimes your first diagnosis isn’t your last diagnosis. Or in the words of Shrek, your diagnosis is like an onion. Onions have layers. When we received our first diagnosis of Dyspraxia, we were relieved to have a name for Lucy’s condition. Then came the second diagnosis of Apraxia of Speech, then finally Sensory Processing Disorder. Years later, we are still getting new words, like Significant Developmental Delay, Cortical Vision Impairment, etc…As it turns out, some diagnoses are umbrella terms for other conditions. We just got our umbrella term later. And we’ve learned that there are layers to our onion. We just keep peeling and learning new things. It can be wearying. In order to preserve your sanity for the long-haul, it’s best to look at diagnosis as a journey, rather than the defining moment where you learn and solve everything.
4. It’s okay to take a break.
There may be times where you reach a plateau and things are going smoothly. You’re in a routine that’s working, you’re not trying to integrate new information, and your family is doing well. It’s okay to take a break, and just be in the moment. At various times, I’ve talked to several parents of special needs children who have told me that they’re taking a few months off from research and just enjoying their kids. It’s tempting to feel like you constantly need to be looking for the next therapy or treatment or diet, but if things are going well and your family is happy, it’s a gift to relax into that for awhile. There will be hard moments, so put the sweet ones in your emotional bank account to help you when you’re down in the valley, not up on the plateau.
5. You can do it.
Here’s how it went for me: shock, grief, resolve. Once you dust yourself off and look around, when you’ve decided to start the work in front of you, you may not know where to begin. I remember joining groups on social media for information and support and sometimes having absolutely no idea what the other parents were talking about. I would hear terms I didn’t know, and things that other parents were doing that I’d never considered. It was bewildering trying to sift through information. Just know that you will learn. And there are no stupid questions. Ask your doctor or your pre-school teacher or that mom on Facebook whose blog you read. You will meet the nicest people, and other parents want to help you. Someday, you’ll be that mom or dad, paying it forward. You can do it. I promise.