Be Diligent about Your Child’s Treatment.
Stehli says, “Be relentless, but be polite,” when advocating for your child. It is important to maintain good relationships with the medical professionals and the educators who work with your child, but it is even more important to ensure that your child is getting the best possible treatment. “Follow your intuition as a parent and go after whatever you feel is the next right thing,” adds Stehli.
Walker also encourages parents to be diligent about insurance coverage. “Sadly, most insurance companies don’t cover many of the treatments that children with special needs require. However, writing letters to case specialists might result in coverage.” She adds that you should keep precise records of all phone calls, emails, and letters, along with names and assigned case numbers. This will be a huge help when you need to follow up.
When You’ve Done All You Can, Relax.
“If your child has found the right school program, therapist, and doctor, know that you have done your job,” says Walker. Give yourself a pat on the back!
Take Care of Yourself and Your Other Relationships.
Take time out to do the things you enjoy. “You have to find a way to keep having fun. Otherwise, life becomes a chore,” says Stehli. Set aside a bit of time each day that is just for you. Remember, you can only take care of your child if you take care of yourself too.
You’ll also need to take steps to nurture your marital bonds as well. “A life of rushing between appointments, fighting with insurance companies, and just getting through the day of meeting your child’s needs can drain the best of relationships of their spark,” says Walker. Go to a movie, or a kid-free dinner. Do something that you and your spouse enjoyed before having children. Remind one another why you fell in love in the first place.
Try a New Perspective.
Emmy-award winning writer Emily Perl Kingsley is a mother of a son with Down Syndrome. When asked to explain what it is like to raise a child with a disability, Kingsley wrote an essay called “Welcome to Holland” to describe her experiences.
Kingsley explains that raising a child with special needs is like planning a wonderful vacation to Italy, but your plane lands in Holland instead. You prepared yourself for a trip to Italy, you’d always dreamed of visiting Italy, but now you must stay in Holland. There’s nothing wrong with Holland—it simply isn’t where you expected to go. But you adapt. You trade your Italian guidebooks for Dutch ones and you learn a whole new language. You will always be disappointed that you didn’t get to visit Italy, but if you focus on those feelings, you’ll miss all of the truly wonderful things about Holland.
There’s no doubt that raising a child with special needs has its own set of challenges; it wasn’t what you planned to do as a parent, but now it is the most important job you have.