February 14, 2009

Happy Valentines's Day - Love Yourself, Too

Red hearts, dancing cupids, and glitter are all over the place. It’s Valentine’s Day on Saturday. It’s my chocolate fix between Christmas and Easter. And my little kids are learning about making friends, sending handmade cards in the mail, and having the mailman bring them an envelope with their name on it!! It is pure joy, a minor holiday wrought large because you are three and four and don’t have presents that are too big and a celebration that is too noisy. The parents, though, are exhausted. Simply wrung out. Every holiday is just one more extra thing to prepare for and do. They run from therapy to therapy and try to understand exactly what is “wrong” with their child. Children who transition from early intervention into the public school system at three are in a particularly awful situation. Their parents are not told anything about how public schools work, and they largely trust the people with college degrees on the Child Study Team. Those I see now are young parents with extremely diverse backgrounds. But they share a common experience. They are never told that they are joint and equal partners with the school personnel in determining their youngster’s individualized services. Yesterday I asked such a family, a college educated Mom and Dad who were both teachers, what they expected to happen at their first meeting with the child study team before their child turned three. They said, “They’re going to tell us what services they’ll give. We’ve been told to look at three different schools.” They were completely flabbergasted when I told them this was not the way it worked. Every family leaving early intervention tells me the same thing. They are little lambs being led to slaughter, earnest, intense and loving. They want to be the perfect parent, do everything to help their young child improve. Or they are not the perfect parent and want their child just to be quiet for five minutes so that they have a brief respite from the relentless caregiving and lack of sleep. Or they are angry at the brazen betrayal of their dreams for a healthy child. No matter what kind of parent, they forget to love themselves while they reach into their gut for the courage to face an unknown future. Parents must be nurtured and supported in the early days of visiting special education, for they are as vulnerable as their child.

Alice D. Domar is a psychologist and author of “Be Happy Without Being Perfect.” She writes about the unhappiness that accompanies perfectionistic tendencies. I must admit that I encourage these tendencies a little in the parents I work with. Keep careful records. Learn as much as you can about the child’s disability, about the laws controlling special education, about your community. You are your child’s primary teacher. Structure your home and what you do so that there is a routine and each person knows what is expected of the other in the home. But there is also goofiness and playtime and laughter thrown into this, all mistakes providing the opportunity to improve. The only thing that must be perfect is the love for the child. And, though it is hard to admit, it is difficult to love some children.

Domar makes 5 basic recommendations for those of us who tend to be perfectionistic:

1. Cultivate calm. Arrange your schedule so the start of the day is spent on planning and the end of the day on loose ends. I change that a little and suggest that the end of the day also plans for tomorrow, while tying up loose ends of today.
2. Reward good behavior. Break up what you have to do into smaller tasks. Then reward yourself for completing each mini-goal. This is a really important one. Start with what is doable. You’re learning about how to function within the special education system and at home. Pick anything that will help you, the family, and your child in some way. Do a little bit each day toward that. Be patient with yourself. The trick is to keep pushing forward and not to give up. Think…Tortoise. Hare. Slow and easy wins the race.
3. Watch your co-workers. Domar presents this idea within the workplace. Do colleagues get to work on time? Take lunches that are too long? For parents, it means watch other parents who seem to be surviving the day to day work of raising their special needs child. How do they manage it? Watch and learn from those who are able to obtain services from the IEP team. One of the very best ways to do this is to join a parent support group. Do not isolate yourself with the thought that you are the only one experiencing your set of problems. Be careful who you choose as role models. Everybody is looking for somebody “better” than they are. The measure of success is what I call evenness. The highs and lows begin to even out so that you have better control of your child and your life. When situations come and you loose control, accept it, do the best you can, and move on.
4. Stop trying to impress. Don’t try and please everybody- your mother-in-law, the neighbors, the teacher. Learn to say “No” without apology or explanation. Say what you mean clearly and unapologetically. At one of our meetings this month, a parent refused to help with the hospitality committee. All of us stood and applauded her. Ask yourself, how clean does my house have to be? Somehow when we have kids with disabilities, we think we have to compensate in other ways for having a handicapped child. Put guilt away. I’ve been working in special education as long or longer than anybody. With each child in each family in each generation it is always the same. Part of our growth as parents and as people is in gaining comfort in establishing clearly defined boundaries, and never loosing sight of the fun of individual differences and personal passions.
5. Prioritize, prioritize, prioritize. Put incoming tasks into categories as to what must be done today, tomorrow, by the end of the week, or end of the month. Everybody has their own way to do this and their own list of priorities. Some use calendars, others blackboards, post-its, blackberries (I still think this is something to eat…). People I know and love as friends live in a physical world of chaos. But it never feels that way because internally, their minds are organized. They know who they are and what is important to them. Meals are ready, children are cared for. Clean underwear is usually in the drawer. Everything else is secondary. If you have an unhappy child, a child who is not learning and without friends, or if you have no friends, that rises to the top of your list.

Special education is only a part of your life. Put it in perspective with everything else. Make yourself a valentine, for this is the week of silliness. Lighten up. Have a piece of chocolate with caramel inside.