Welcome to the Club

Finding out your baby has a life-altering diagnosis will shatter your world. Eventually you’ll put the pieces back together, but it’s going to be hard.

I’m writing this while feeding my almost-2-year-old lunch. She eats orally, but not independently yet, so I’ve gotten good at multi-tasking during meals. This morning, I confirmed insurance information for three medical procedures she’s having this week and rescheduled one for later in the day. Tomorrow, we’re driving 410 miles for specialist visits. I’ve talked to my counselor on the phone and catheterized my daughter two of the four times needed. I still have to call our assigned insurance nursing contact to discuss ways to get additional coverage for therapies, visit four clients for my bookkeeping business, pack, and figure out what we’re having for dinner tonight. This week has been “easy” because I canceled all therapy appointments due to our travel… but it’s still not easy.

I feel lucky to have known about one of my daughter’s diagnoses before her birth, so I could prepare myself, or try to at least. My husband and I have talked about our decisions a lot over the last years, trying to find reassurance that we’ve done our best. Honestly, we have both felt like failures (me more than him), but seeing a certain gap-tooth smile every day makes it all worth it. Lately I’ve been moved to help other new parents facing a scary diagnosis, so just follow these steps to make special needs parenting easy! (That’s sarcasm; special needs parenting is difficult, frustrating, sad and so rewarding.)

1. Just survive. You’ll be in shock at first. You’ll be scared and uncertain of what to do next. You may feel relieved that you finally have a name for what is going on with your baby. No matter what you feel, it’s normal. Now, you just have to keep going. Eat, sleep, shower. Love on that baby, and the rest of your family. You’ll probably go into survival mode, and that’s OK. Your body knows what to do, so let it. Don’t look too far ahead just yet, there will be plenty of time for that. When you feel ready, you can take the next step.

2. Research. Learn all you can about your child’s diagnosis, treatment options, your health insurance policy, assistance organizations, services available… eventually, you’ll be an expert in an area you probably didn’t know existed before. I use Pinterest and Google Drive to save articles, reports and information for easy access on my phone. I use speciality Facebook pages and groups for inspiration, and Amazon to buy everything possible. Use your knowledge, of the diagnosis but also of your child, to advocate for the best treatment. Trust your instincts, always, even if that leads to disagreements. You know your child the best, so do your best. You may come across as aggressive or pushy, but that’s OK – your child can’t stand up for him/herself, so you have to do it.

3. Build your child’s medical team. You’re probably going to have an extensive medical team for your child. It’s going to be hard to balance time commitments and travel hardships against the desire to provide your child with the best opportunities. You’re going to be horrified by health care costs and stay awake at night worrying about how you’ll afford that therapy, how you’ll make all those appointments, and the fear that you’re doing too much or not enough. Although doctors are very important, they’ll probably have little to do with your child outside appointments. It’s easy to live with a doctor who has a terrible bedside manner but provides great medical care. It’s more difficult to have a physical/occupational/speech therapist (or other provider who sees your child regularly) who doesn’t treat your child with respect, so do your best to find regular care providers who can love your child too. Good care is important, but so is respect and affection. Sorry doctors, but nurses and therapists do more to keep parents sane.

4. Create your village. Can you parent a child with special needs totally alone? Probably. Should you? No. Some people are lucky to have a village already, close friends and family who live nearby and are willing to help you in any way. Most people don’t have that luxury. You may not have a supportive family, or your family lives far away, or they just can’t handle how hard every day is. Your friends may not have kids, or their kids’ typical development is too hard for you to watch, or they get sick of you cancelling plans at the last minute.

If you don’t have an amazing support system, now you have to create one. Put effort into the relationship with your significant other. Speak up about your child’s successes and keep your village involved in your child’s life, progress and struggles. Find other special needs parents and foster those relationships; you need someone who understands how hard this is and your kid needs to know they’re not alone. Don’t be afraid to cut off toxic relationships too. You only have so much energy, so don’t waste it.

5. Embrace your feelings, but don’t get stuck. Every emotion you feel through this process is totally valid. Don’t deny your feelings, but don’t get stuck in the negative. So many days are going to be hard, but you have to try to stay positive. That probably means adjusting your expectations for parenting and for your child’s life. That means protecting your mental health, so feel free to ignore the typical childhood development charts and ask the pediatrician if you can skip filling out those questionnaires at well child appointments.

Find a counselor you click with. Go to family or marital counseling too, if you need to. Parental mental health plays a huge part in your child’s happiness, so do it for your kid if that’s the best motivation. Don’t you EVER feel ashamed for needing counseling, anti-depressants or anxiety medication; do whatever it takes to be healthy. Admitting you need help is one of the bravest things you can do.

6. Parent and love your child. You’re going to want to try every treatment, buy every piece of equipment, but you can’t. You still have to pay the mortgage and buy groceries, put gas in the car and buy cute baby clothes. More importantly, you still have to raise a child, not a medical experiment. Your child still needs to play and explore the world, to touch the snow and watch bubbles. Yes, you’ll probably have to do things differently, but always remember to let your kid be a kid.

If you live near Bozeman, consider adding the Orchid Club to your village. The Orchid Club is a safe place for parents of children with special needs to find support and community. Please visit us on Facebook at facebook.com/theorchidclubmt or attend an event – all parents of children with special needs are welcome.