Wednesday, October 8, 2008

It Takes A Village

This maxim exists for a reason. It's true for any kid. Raising kids is hard, parents need help, and kids benefit from interacting with lots of loving people. But kids with special needs really do need a village, a fact I am finding both challenging and wonderful.

The main challenge is logistics, as noted in the prior post. Here's a rundown of our family's team, roughly in order of frequency of contact:

- Special needs integrated pre-school including multiple teachers and aides
- Speech therapist
- Occupational therapist
- Physical therapist
- Infant development therapist (who we sadly had our last meeting with today as she's retiring).
- Housecleaners
- Therapist for parents to help us deal with this diagnosis and all the baggage it comes with
- On-call nanny to care for our child when he can't go to the special school due to the common cold he will most likely have all winter
- Babysitter (she has a day job so can't be the on-call nanny)
- General pediatrician
- Developmental pediatrician
- Social worker
- Geneticist
- Fragile X specialist
- Neurologist

(As a fun aside, which will be the subject of another post - lots of these village members will be replaced by new ones when our son turns three because at that point the school district will be in charge of his care. So we'll have a whole new set of people to get to know.)

Logistics aside, this is a blessing. It has been humbling and freeing to be able to say that I really don't know, often, what to do with my son or how to help him. I have to hand my son over to the village. There's no other choice because we can't possibly do this alone. If you are not the parents of a child with special needs, you may think I am suffering from a lack of confidence or need to read more parenting books. Here are a couple of examples of things I couldn't teach my son:

1. To eat. Literally, to bite, chew, swallow. My son would not touch non-pureed food of any kind until we got a feeding therapist to teach him how to eat. We tried everything from organic scrumptious fruit to french fries to cake, and at best he wouldn't touch them, and at worst, if we tried to introduce the offending substance into his mouth, he would cry, gag, and vomit. Our feeding therapist got him to eat within a few months.

2. To play. I really wanted my child to play with this toy. He loved it whenever I pushed the popper around the room, but whenever I handed the stick to him, he just looked at it blankly. After months of popper demonstrations which delighted my son, but did not succeed in teaching him how to play with it, I told the infant development therapist what was happening. She explained that he had a motor planning problem, and could not easily envision his body moving through space the way that most people could. Thus his difficulty in mimicking us. She put his hand on the toy, then put her hand over his (a common technique I now know is called hand-over-hand), and pushed the popper. Within a few minutes, he was smiling and popping the popper on his own.

Something in our society makes parents, especially mothers, feel that they must know how to take care of their child, that they are the expert of the family. It seems accepted that a parent will take pride in this responsibility. Some of our providers are sensitive to this, and will say, "But of course you know what will work for your son," and though I appreciate the comment, I sometimes think, "No, I really don't." And that's okay. I'm very grateful to our village for all their support, patience, and guidance. Even if it is a logistical nightmare.

No comments: