Having A Disabled Kid: A Guide For Pregnant Couples
Your first step is to breathe
You’ve learned that you are going to have a baby affected by a disability. You’ve poured over information about prenatal testing accuracy and had long conversations with your partner. Your choices have been made and you await a due date, while inside of you boils a cauldron of emotions — not the least of which is worry. Now what?
Take a deep breath and consider the following.
Allow Yourself To Grieve
Look, the child you will have is not likely the child you expected. All of the preconceived notions you may have had about fatherhood or parenting may feel as if they are slipping from your grasp. It is absolutely normal to grieve the passing of the ideal.
Psychologists note, you will expect to see all of the stages of grief. And furthermore, you will experience them at your own pace. That is okay. Each should be given it’s due. And you may arrive at acceptance before or after your partner does. But she is also experiencing grief. So allow her to move at her own pace as well.
Focus On Your Family
It is completely normal to feel overwhelmed as you prepare for a baby affected by a disability. You have a ton of things to think about above and beyond the fun things like names and the nursery. Right now, that’s the way it needs to be. The better prepared you are, the better things will be in the long run.
This preparation may mean putting any relationship responsibilities on the back burner that are not related to your partner and any other children you might have. It might feel rude. But it’s necessary to focus on how to care for the incredible kid who’s coming into the world. People will understand, especially after they meet your badass, totally secure kid with the amazing punk rock name.
For a typical kid, you will have probably already thought about things like wills, life insurance and estate planning. But kids affected by disabilities require some additional considerations including:
- Creation of a special-needs focused legal and financial team for sound advice
- Establishing legal guardianship after the kid is 18
- The development of a special-needs trust to ensure access to social security income
- A letter of intent for future guardians
These considerations can get complicated quickly. Getting connected to a professional ASAP will make things easier. If you don’t know where to start, ask for references from other parents with kids affected by developmental disabilities. A local community of these parents will be easily found online, and are way more helpful than the elusive Stretch Armstrong fan club you’ve been Googling forever.
Kick Your Research Into High Gear
One of the best way to prepare is to dive into books written about and by people who have made this journey before you. There’s an awesome list on GoodReads to start you out. Here are some of the top titles, which suffer only from really long subtitles:
- My Baby Rides The Short Bus: The Unabashedly Human Experience Of Raising Kids With Disabilities: Tales of proud parents whose kids have what turns out to be the dopest ride to school.
- Expecting Adam: A True Story of Birth, Rebirth, And Everyday Magic: A Harvard educated overachiever meets her son with down syndrome and happily learns that a lot of what she thought she knew was total bullshit.
- The Boy In The Moon: A Father’s Journey to Understand His Extraordinary Son: The father of a boy with a rare genetic mutation travels the world looking for understanding and eventually comes to terms with his self-blame.
- You Will Dream New Dreams: Inspiring Personal Stories By Parents Of Children With Disabilities: Yep. Long subtitle.
- This Lovely Life: By all accounts a harrowing read, but well worth it for the eventual triumph of a multiply-disabled child who beat all the odds.
Beyond books, get yourself oriented to services you’ll be able to access for your kid. Start with this amazing list of early interventions that will help your super cool baby keep pace with those lazy “normals.”
Do Some Self Care
All of this could make you feel pretty run down pretty quickly. So make sure you take some time for yourself. De-stress with exercise. Maybe eat some greens every once in awhile. Practice a little mindfulness meditation when you get a chance. And just sob your eyes out when you need to.
Self care shouldn’t stress you out. So get in those moments when you can. Your kid will need a solid dad. You are that dad.
Consider Your Partner
There is a seriously brutal statistic that you’ll find as you research: 80 percent of marriages with a child born with a disability will end in divorce. Ouch.
It is not an inevitability. The bedrock of your relationship remains the same: open communication and time for each other. Prepare ahead of time by setting up a support network that can give your and your partner a break every once in awhile. Sometimes you need to stop being caregivers and remember being lovers.
Here’s the thing you may not expect. Your kid will go through all of the developmental stages that a typical kid will go through. All those amazing milestones? Most of them will still happen. And the lesser ones will just be bigger triumphs.
Many parents with kids affected by a disability report that their child has simply brought an incredible new perspective into their lives. Not everyone is allowed to face that challenge and find the incredible joy in it.
Guess what? You’re going to Everest. You didn’t want to go, maybe. And sometimes it’ll be a rough climb. But the view you’ll have of the world from you vantage point will be unique and gratifying. If there were ever something to celebrate, that’s it.
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