There are some parts of special needs parenting that you just cannot anticipate. Whether you discover that your child will be special needs while they are still in utero or just after birth, whether in early childhood, or later, nothing prepares you for the punch in the gut of diagnosis. Especially if you have little to no experience with the special needs world.
Prospective parents have a vision of their child. Some people think they will have a son to toss a football with. Some people think they will have a daughter who is a ballerina who loves pink and sparkles. Or, sometimes, it is the son they envision as the dancer and the daughter who wears the shoulder pads. But, whatever the vision is, I have never met a parent who envisioned their child having a disability. I mean, have you? No one says that they are so excited about having their baby and they know just what they’re going to do when the baby stops developing normally at 7 months. They don’t register for that perfect wheelchair. They don’t ask for magazine subscriptions so they have enough reading material for all of the hospital stays.
Finding out “something is wrong” with your child is a reactive position to be in. You can’t plan ahead for it. It happens to you and you react. It’s as simple as that.
Life happens.
But there are certain things that you CAN prepare for in advance. If you know it’s coming, you can be PROACTIVE instead of REACTIVE. And being proactive has some distinct advantages.
Being proactive means that you have time to plan how you want things to go. With a calm head. When put into a reactive situation, it can feel like you are a deer in the headlights. Often times you choose how to react based on what is available or what you can create in that quick time frame. Never mind if you slept last night. Or if you are still recovering from a migraine after a four hour tantrum yesterday that began when your child smelled something weird in the air that you can’t smell, no matter how hard you try. When you envision what is coming and you plan how you will handle it, it gives you a sense of security. It takes away the deer in the headlights feeling. It brings down your anxiety.
This is not to say that your proactive plan will always be perfect or always work. But having something is better than having nothing. Investigating what is available makes your options clearer and thus, easier to navigate.
So, to recap, ENVISION + PLAN = SENSE OF SECURITY.
But what do you apply this concept to? Everything.
Make a list of what worries you when you think of the future with your special needs child. If you know that one day in this lifetime you will become ill and need childcare (which is crazy hard to find for special needs children), start searching for the babysitter NOW. While you are perfectly healthy. It’s so much easier than when you have a temperature of 102 degrees and can’t swallow without pain. Are you aware of the fact that one day you will die? Don’t wait until you are on your deathbed to try to figure out who will care for your child. Figure out who that is. Check with them to make sure they really will take on the responsibility. Create legal documents. NOW. Make a will. Yes, you. Don’t wait. Or your first husband could get your home even though you haven’t been married to him in 20 years and your second husband hasn’t lived with you for five. Meanwhile, where will your child live?
If you can’t figure out a plan for your child in the event that you are unable to care for them, NOW is the time to reach out to the school, the counselor, the therapists, the organizations, anyone and everyone to ask for their input on what to do. Get suggestions. Someone probably will come up with some you never would have thought of.
Are you aware (in some hazy, distant future kind of way) that your child is going to grow up and be an adult with disabilities? There are so many parents that I have been reading about who seem blindsided by this. They knew it was coming but since they didn’t know how to handle it, they just kept putting it off instead of researching what will come next. Does your town have programs for new adults like your child will be? Investigate! Ask the school for referrals. Ask them about transition. Think about what kind of daily life your child would enjoy and thrive in. Maybe if your town doesn’t have a program that appeals to you, you could start one. Or, if you find an amazing program in another city, would you consider moving there? Don’t wait until their last year of school! Start now, especially if your child is younger than age 10. Soothe your anxiety. Know your options. I read one woman’s blog who has worked herself up into a daily panic attack because she has NO IDEA what’s coming next. I feel her pain. But it is evident to me from what she wrote that she hasn’t researched it. Heck, I’d be panicking too!
I know, I know, you are exhausted. You don’t need ONE MORE THING on your plate. But break down what seem to be huge tasks into baby steps. You can do this, since you are starting early and giving yourself extra time. Make a list of what steps you need to get you to making some decisions.
Be proactive while you are healthy, happy and functional. Start early. It is the greatest gift that you can give yourself and your child.