My son was identified as autistic seven years ago, but I remember the isolation, fear and despair of that time as though it were yesterday. Through support groups and casual conversations, I've learned that this experience is all too common.
While the professionals who evaluate our children provide treatment plans and referrals, few, if any, offer resources for family support and counseling. In my case, I left the doctor's office that day with a 32-item treatment plan, a list of therapists near our home and no idea of who to call, where to start or how to prioritize.
What I needed then, and what I find that more and more mothers of special-needs children are searching for still, is a sort of parent treatment plan. In addition to the lists of recommendations for our children, we need a handful of suggestions to help us figure out how we're going to handle this new parenting experience.
With that in mind, I offer the six things that I wish I had known from the very beginning:
1) Early intervention does not necessarily mean you have to put your child in every available therapy tomorrow. It means do not wait years to look for support for your child, hoping he or she will grow out of it. It's okay to take several weeks, or even months, to research, consider your options, process and deliberate. That time will not break your child.
2) It's okay to postpone starting a new intervention until you and your family are all ready to commit to it. For example, it's okay to hold off starting a gluten-free diet until after the Thanksgiving dinner you committed to hosting before your child was diagnosed. The more stressed you are, the less likely you are to able to implement your new intervention successfully.
3) A therapy plan needs to work for the entire house, or it's not going to get done. If the plan includes one-on-one work with your special-needs child for 2 hours each day and you have three children and a partner or spouse who works 12-hour days, that's probably not going to happen. Be honest with the therapists about what you think you can accomplish. That's not bad parenting – it's recognizing reality.
4) Ask your child's therapists for specific assignments. Some therapists will recommend, for example, that you “work on fine motor skills this week.” If you have no idea how to go about that, ask. And if the suggestions are too vague for you, ask for a specific set of activities and how much time you should spend each day. If the therapist's expectations feel unrealistic, see number 3 above.
5) You need at least 15 minutes of quiet time each day. This is not time to read more books about special-needs kids or research that latest treatment option. This is not time to update your mother about your child's progress. This is time for you. Even if you have to lock yourself in the bathroom to get it.
6) Have fun! You're the parent, not the therapist. You want to support the therapy at home, but not at the expense of enjoying your child. Goofy faces, silly songs and tickle games are just as important as special diets or occupational and speech therapies.
If you are just starting this special-needs parenting journey, hang in there. It gets better – not perfect and not typical – but definitely better. Even if you can not quite see it right now, you and your child still have future worth looking forward to. This is a beginning, not the end of everything.