1. Not knowing is a lot harder than knowing. Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc. But the hardest thing to admit is that most of it is simply up to their brain and its wiring. There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient . Good signs, yes. But nothing is certain. The not knowing can drive you crazy if you let it.
2. The internet is a blessing and a curse. On one hand, there is valuable information out there. Yet, information overload can get you stuck. You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.
3. Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer. It is vital to find people who know what you are going through. Yet, sometimes it can produce even more negative feelings. Since there is always someone who has it worse than you, it can make you feel guilty for complaining. And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative. Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse. It can always be worse.
4. Holidays and special events magnify the situation. Birthday parties are no longer joyful events. Your special needs child is in an unfamiliar setting, one with all kinds of new dangers. You actually have to observe typical children alongside your child, so his delays and social difficulties are painfully obvious. People naturally want to know what to buy your child. And you might not know. He might not play with toys. And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present. No matter what is said and done, there is an air of sadness. Ditto for Christmas.
5. Well-intentioned people will silence you and add to your frustration. They don’t mean to, but it is human nature to comfort and soothe. Invariably, they will attempt to do so in awful ways. Some will deny there is a problem and say that everything will be just fine. By denying there is even a problem, they effectively silence you and leave you isolated in your own mind. Some will try to remind you how grateful you should feel. And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.
6. Picking your battles will take on a whole new meaning. A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers. Even more will judge you for “giving in” to what they view as tantrums and being spoiled. You, however, know that therapy, joint attention activities, and getting to school are the real non-negotiables.
7. People will surprise you. Casual acquaintances will step up to be better friends than the friends you most believed you could count on. There is nothing like becoming a special needs parent to give one clarity.
8. Doctors and other experts really don’t know everything. Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong. They may encourage you to wait and see. You will want to believe them and may forget that childhood development really isn’t their specialty.
9. If you aren’t a naturally assertive person, you will have to become one. People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs. Even if it goes against your nature, you will have to fight for him. You will have to insist — which is both harder and easier than you might expect.
10. It’s easy to neglect others when you are caught up with the needs of one child. You can forget the importance of date night with your spouse. You might forget a friend or loved one’s birthday. You might realize that your typically developing children aren’t getting enough attention from you. And you might realize you are not taking care of yourself and are about to fall apart. You will have to figure out a way to stay both connected and together. This is hardest thing to learn and do of all.
11. You will develop an appreciation for the little things. There are moments of interaction and progress that will steal your breath. Hugs and kisses are unbelievably precious. And you will understand why this little soul was given to you. It’s because you are a perfect match for one another. And that is what sustains you through everything else.