When Your Baby Is Born With Medical Issues

The day you find out you’re pregnant, or have been approved for adoption, is a day of joy, dreams and hopes. But then, of course, you discover that the long awaited “perfect” child is not actually perfect. Does the joy dissipate, or can you find it again? I believe you can. Perhaps through prenatal screening during pregnancy, you learn your child has Down Syndrome or spina bifida; or, after the child is born, that they have a rare blood disorder or are bipolar or autistic. Regardless, it is a loss and it is heartrending to discover that all of your hopes and dreams for this child may not be realized. But there can be joy. I know it and live it, every day. Finding joy in this situation is a choice.

We chose to adopt our son, knowing that he was autistic. We chose to adopt our daughter, not knowing she was bipolar. You never really know what you are going to get with any kiddo, whether they are your natural child or an adoptive child. I believe every child is a gift that can be cherished. Some of us just have to work harder to cherish the gifts we are given. One of my favorite memories of my 10-year-old son happened after he’d gotten in trouble and was crying his apology to me, stating: “I guess I can’t be autistic anymore.” “Why?” I asked. “I got in trouble because I was autistic,” he answered. I realized he was crying, not because he was in trouble, but because he thought somehow his punishment would take away his autism. He liked who he was, regardless of his convoluted communication style, sensory issues, poor handwriting and lack of social skills. Despite his intelligence and other natural gifts, my older “perfect” son will probably never have the same positive self-confidence as his little brother, who will never measure up to the world’s standards of “normalcy.” He’s not bothered by his autism and he’s proud of his accomplishments. And so am I. I love his autism, because that’s who he is. I love his oddities, since it gives me a fresh look at the world. I love his lack of social skills, because it allows me to perceive people and situations through a different lens. I love his sensory issues, since it provides me with an appreciation of my own senses. I love listening to his attempts to organize his thoughts because he often brings great humor to his thought processing.

There are services and aides for parents with more difficult children. There are federal and state laws that ensure your child’s developmental milestones are being met through Early Intervention Projects. Your pediatrician can give you the contact numbers if you suspect your child is not meeting appropriate developmental goals. There are programs like Eagle Mount that let our children know they are normal and can do what other children do, perhaps in a different way or when taught differently. There are parent support groups that allow parents to vent and share their frustrations and joys. There is no doubt that parenting a child with a disability is hard, exhausting, frustrating and annoying, but it can also be joyful.

I went to Russia wanting two more “perfect” children. I did not get perfect children, I got children with challenges. Their challenges have made me a better mother, wife, daughter, sister, friend and therapist. Their challenges allow me to grow with them in patience, perseverance and love. I love the individuals that they are becoming and I have new dreams and hopes for them. I choose joy.

Resources for Parents

NIHCY.org: This is a great online resource that gives an overview of services available for children (birth to age 22) with developmental delays and/or disabilities and provides links connecting you to state and federal laws. Eagle Mount is a local organization committed to providing quality therapeutic recreational opportunities for people with disabilities and young people with cancer, and to providing support for families of participants so that “they shall mount up with wings as eagles.” Bozeman: (406) 586-1781 or Helena: (406) 442-6103, 3400 Centennial Dr., Helena, MT 59601.

Septa (Special Education Parent, Teacher Association): Parent support organization for Bozeman, Belgrade, Manhattan and Livingston. Contact Alyson Ball at kball977septa@gmail.com.

Special Education Directors at your local school district: Bozeman School District director, Chad Berg at chad.berg@bsd7.org, is a great resource for parents and families in the area. In Helena, contact Lisa Lowney, llowney@helena.k12. MT, US.