Raising kids with developmental and health-related challenges
Parenting is hard under “normal” circumstances. It gets exceptionally tough when you have a child with special healthcare needs and the emotions you can feel range widely.
The American Psychological Association (APA) reminds parents, “When a child is diagnosed with chronic illness [or developmental challenges], it's ordinary for parents to feel guilt and sadness. Anger is also common. You may feel angry toward your partner, the world at large or even, at times, toward your child. These feelings are normal.”
Tena Green, whose first-born son was diagnosed with Downs Syndrome when he was six weeks old says, “When we first found out, it was like a punch in the gut. I was 26 when I delivered, so I had it in my head that only older mothers have Down syndrome children.” She recalls receiving a book about all the things her son wouldn’t be able to do, which just seemed wrong. “I wouldn’t put expectations on any child, not even one that has a diagnosis. We assume Brady will do everything and if he doesn’t, we’ll move on from there.”
Beyond validating your feelings and taking strides to move forward, there are several ways you can help navigate the challenging seas of having a child with health-related issues.
Whatever condition your child has, one of the best ways to cope is to become an expert about it. Research, research, research and ask a lot of questions of your child’s medical experts. Dave Marcy, who’s son was diagnosed with a rare medical syndrome before birth, says, “You need to do enough due diligence on your own to make sure that the professionals providing their services have done their homework, too.”
The information and paperwork accumulates quickly when your child is undergoing special diagnoses and care. “We had a cancer notebook of all treatments and protocols. Keeping track of everything in an organized way helps make sure you’re getting everything you expect and it helps eliminate mistakes,” says Jennifer Salvador, whose daughter was diagnosed with acute lymphocytic leukemia when she was 3 years old and then again when she was 11.
You are your child’s best advocate, so trust your gut. “There are situations where you have to make decisions and you have to trust you’re making the right ones,” Salvador says. It’s easy to second-guess yourself, but the key is to stay calm, take deep breaths and know you’re doing the best you can do for your child.
Let people help you
Contrary to an engrained American characteristic, pulling yourself up by your bootstraps and soldiering on versus asking for help isn’t advisable when you’re parenting a sick or developmentally challenged child. It will be easier if you forget that cultural norm and invite support. Salvador recommends that you make a list of what’s useful to you and share it with friends, family and co-workers. “Having a meal delivered after a full day at the hospital is fabulous. Or having someone else make sure the dog gets fed. Letting others do little or big things for you really helps.”
Remember the other kids in your family. If you have more than one child, make sure to spend special time with the others. Keep them informed, let them help and schedule time away from your sick child just to have fun with your other children. Blake Salvador, Jessa’s older brother, says, “I really felt included when my parents brought me to the hospital for Jessa’s chemo therapies. I felt like I was doing something to help.”
Alexa Marcy, says, that even though her brother’s health issues required a lot of her parent’s attention, what really helped her was that “they made special time to support me in my sports. That was important to me.”
Make time for your partner
If you have a spouse or are in a committed relationship, take time to nurture your relationship. “It’s important that couples find ways to validate each other,” says Carl Nassar, professional counselor and director at Heart-Centered Counseling. “What parents often need most from their partner is for them to simply listen and say, ‘I understand. I hear you. We’ll get through this together.’ What’s most important is that our partners lean into each other at these times and offer reassurance, the reassurance that we are seen for who we are and what we feel, and the reassurance that we are not alone in going through this.”
Additionally, Jennifer Salvador recommends couples, “Figure out what roles each parent is best at and divide and conquer. Realizing and respecting each person’s strength in the relationship is key.” She also says she and her husband tried to go out to lunch with each other occasionally to discuss topics that were very emotional or about which they disagreed. Meeting in a public place helped them keep their emotions under control, and facilitated a calmer, more productive discussion.
Parenting a child with extraordinary challenges will be easier if you set your attitude to find joy in the journey. “Just like any other child, children with health care needs will bring you love and joy, maybe more,” Green says. “Brady is 11 now and just said a full sentence the other day and I almost fell off my chair. With ‘normal’ kids, it’s easy to take simple things for granted. Brady helps us remember every day is a gift.” Green adds, “It’s going to be okay. You will be amazed at the strength and type of parent you’ll become because of that child.”