Hand to Hold's Official Blog: Written by Parents for Parents

Three Things to Do When Given a Special Needs Diagnosis at Birth

I never imagined I would have a special needs child. No one ever does, I suppose. My dreams were for a happy, healthy bouncing boy. A brother for my firstborn. Although there were slight indicators something was wrong when my baby was in utero – primarily that he had a two vessel cord – I was shocked to discover his condition at birth. We didn’t get an official diagnosis until he was two weeks old, but the moment I first heard him cry I intuitively knew something was wrong.

mod_nicu-12Some parents discover their child’s special needs after years of questioning, years of testing, and years of living with and learning about their child. Some parents, like many NICU parents, are delivered the news of a devastating diagnosis while they are pregnant. Or, they uncover the realization of a special needs child at birth when they meet face-to-face for the first time. It can be very shocking and hit you like a Mack truck.

Our time in the NICU with our special son was wrought with many emotions, but mostly I was overcome with a raw, visceral kind of grief that was seemingly unending. I struggled to get through moment-by-moment. Our community of friends and family stood with us. They helped with practical things, prayed for us, and promised to stay with us through the long haul. However, as mama I still needed to find my own way through the grief.

Here are three of my biggest coping tools. I used these in the NICU. I still use them today. These things help me bridge the gap between my broken dreams and my new reality.

1.    Research and advocate like crazy. I wanted to know as much as I possibly could about my son’s syndrome at the outset. I wanted to know what I was up against and how I could prepare for and manage some of the challenges we would be facing. For me the unknowns were worse than a full understanding of the worst case scenario.

I know many people say, “Whatever you do, don’t Google it.” I say, “Google it and get it all out there.” Granted you have to discern fact from fiction and always check your sources. You know this, but remember, just because something happens to one baby, doesn’t mean that it’s going to happen to yours. You can; however, learn how to better advocate for your child from the right information and from other people’s experiences.

2.    Live in the moment. I knew that I needed to enjoy my baby right then. When my son was brand new, he wasn’t much different developmentally from any other baby.

It’s so easy to be overcome by the trauma of the NICU or a special needs diagnosis or the general paranoia of being a new mom. However, you’ll never get the first year back. Whether you’re in the NICU or adjusting to life at home, stay present in each and every moment with your baby. Take lots of pictures, enjoy lots of snuggles and let others help you with the unimportant stuff like laundry, dishes, groceries. You won’t regret it.

I continue to fight to stay in today. I constantly try not let the fear of the future rob me from the here and now. I look hard for the blessings in each day. Some days I find little things, some days they are huge, but there is always something good and beautiful that my son brings to our family.

3.    Take care of you. I quickly discovered it was essential to nurture things that were healing and helpful for me. Things like writing, prayer, and getting time to myself. That way, I could be a better mom to both of my boys and a good wife to my husband. This is something that will look different to everyone. You can take time finding what works best for you. Whatever you choose, don’t feel guilty about it.

These three things continue to be at the top of my priorities. I am constantly researching and learning more while trying to live in the moment and enjoy the blessings hidden in each day. And I’m caring for me so that I can care for my family.

If your special needs experience is even a little bit like mine, it’s probably not the romanticized birth-day you imagined at the outset of your pregnancy. When you uncover a special needs diagnosis at birth you don’t allow yourself to dream big dreams for your kid. You learn quickly how to treat their medical complexities. You try your best to prepare for the future of unknowns. And it’s not easy. It just gets a little easier when you can find ways embrace the unexpected. Ultimately you begin to simply love your child exactly as they are.

Kathy McClelland About Kathy McClelland

Kathy McClelland (TX) is mom to two beautiful boys and both spent an extended period of time in the NICU. Her first was a 34-week preemie. Early in her pregnancy she suffered two pulmonary emboli, which revealed two blood disorders. Then late pre-term she developed preeclampsia and HELLP Syndrome. Baby one weighed 4 lbs, 14 oz and was a feeder/grower spending three weeks in the NICU. Baby two was a surprise on multiple levels. Hoping to not repeat the NICU experience a second time, she delivered a 5 lb, 9 oz baby at 37 weeks. However, he was soon diagnosed with a rare syndrome and spent two months in two different NICUs. She writes about faith and finding beauty and hope on her personal blog.

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  1. […] I’m posting on PreemieBabies101 about Three Things to Do When Given a Special Needs Diagnosis at Birth. It’s meant for new […]

  2. […] During the first year of my son’s life I began slowly putting one foot in from of the other. I learned how to prepare for specialist appointments, discuss my concerns and research with doctors, chose the proper therapists, pack for a planned hospital stay, and prioritize things in my life that were important to me (in spite of receiving a completely new role myself). I wrote many of my findings down and published this book, hoping someone else would benefit from what I learned the hard way. […]

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