When I began to see the same patterns in my child as I had seen in hers, I called her and poured out our story. I told her I was tired because my child never slept, I felt like I had lost friends because my child wasn't like my friends' children, I confided in her I was battered and bruised because my child was so frustrated that he acted out by hitting and biting, I didn't know what to do next-so at the risk of being rude, I asked her to share her story with me. Her children are quite a bit older than mine, so she's been at this parenting thing for longer than I have, and since experience is the best teacher in the world, I wanted to learn from hers.
I've learned if I choose to see all the positive things about our family and the way we relate to one and other, and how that can carry into the world, my whole outlook is better. Not going to lie, this isn't always easy; but when I sit back and really think about the cooperative, sympathetic, broad-minded, and patient men we are raising, I can't help but feel blessed. Here are some things that I've come to realize and appreciate about special needs families:
Your normal will be different than most other family's in your circle of friends. We don't go out to eat much. Our food at home is generally pretty bland and had to be white at one point. Our kids didn't have play dates with their friends from school, instead, they played with other siblings in waiting rooms at various doctors offices and clinics. Our Saturday and Sunday were just as structured as school days. We had times that it was okay to eat-breakfast at 7, lunch at 12:15, snack at 4:00, dinner at 6:00-our food had to be locked up between those times.. We rarely invited our kids' friends over so as not to disrupt the routine or have them witness an outburst.
There will be unspoken rules that you and your other children will just know. We had assigned seats in every room of our house. We had a child who would strip down to rubber rain boots with no warning because that's just what he did. Don't touch his blanket, don't touch his plate, don't touch his food, don't touch his face, don't touch his head, don't touch him at all unless he sees it coming, don't sit in his seat, don't talk too loud, don't use the word purple, don't say haircut, don't laugh unless he laughs first, don't take his picture, don't touch his race cars, don't touch his train track, don't change the channel, don't run the vacuum...our kids knew all the rules. Other kids didn't have the kind of rules our kids did. Our rules didn't make sense, but they did make life easier, not only for our child with special needs, but for all of us.
Make sure you educate your other children so they don't become resentful. We read books to our kids to try to help them understand a little of what was going on and what made us the family we were. One such book was Rules by Cynthia Lord. We did lots of work from Sometimes My Brother by Angie Healy. We read Understanding Sam by Clarabelle Van Niekerk and Liezl Venter and My Brother Charlie by Holly Robinson Peete. We didn't hide anything and thought that providing them information would empower them and make them more empathetic.
Your other kids will learn from watching-encourage this. When we did go out to eat, our kids would behave and sit like gentlemen-that was the rule-until one couldn't sit like a gentleman and he would begin his nervous progression. Wiggle, wiggle wiggle, stand up, step-touch, step-touch, step-touch (this escalation could last between 5 minutes and 20 minutes), then pace from behind one chair to behind the next chair and back (this was generally short-lived 5 minutes or less). When the circling of the table began, it was time to go. All of our kids knew this progression intuitively; we did not sit them down and explain it, but they saw it once or twice and knew what was coming. They called the circling of the table "sharking". As soon as the "sharking" began, it was time to leave or suffer the consequences. We still have a "shark" if we are in a noisy place, with unfamiliar people, or are taking too long.
Your other kids will learn from living-lean on this. There was a language that our special needs child made up, in which we were all fluent. People not part of our special needs family could not understand it, and was complex and had really weird vocabulary that was all made up of non-sense words, each had a meaning. Sometimes, our other children would have to interpret-even for us.
We didn't realize what a special needs family we had become until one day at the playground our special needs child was without his brothers. We thought he had been playing all the times we took him to the park, and it even looked like he was making friends. So, on our one-on-one time with him, we took him to the park. We didn't even get the step touch progression, we immediately went to "sharking" and had to leave after less than 10 minutes. Come to find out, his brother was the only reason he would play at the park and we didn't even realize it was happening. On his own, he shut down; he had come to depend on his brothers to support him in even the simplest activities.
Make a plan, but realize that some things will still be hard. Trips to the grocery store were unbearable. The sounds were too loud, the lights were too bright. Forget long car trips. If he was on the couch and grabbed his blankie, the day is done-we couldn't even think of leaving the house again. We would go to great lengths to hide his blanket if we knew there were additional errands to run or places to go. Share the plan-first we will go here, then here, here we will be doing this. The last place we will go is here. If you are good for all of that, we will go home and give you some computer time. (make sure all the children who behave are rewarded). Life will be okay if you deviate from the plan, but sticking to it will make your day smoother.
Be patient with extended family. When at a functions with extended family, we found that they didn't understand the rules. They didn't understand not to hug, they thought it was rude not to be greeted, they thought if they pushed harder, he would "come out of his shell". Have I mentioned his lack of a filter? He will say exactly what he is thinking as soon as he thinks it, which sometimes comes off as rude or disrespectful. Family members have caused meltdowns as they tried to be loving. His brothers always run to the rescue-they are a part of his immediate special needs family-they know the rules, they know the signs, they know the triggers-and they help him without being asked. Most of our extended family is catching on to what he needs. They accept hugs that are offered, but never ask for a hug. Sometimes to get him to talk, you have to ask questions, but not too many. He will answer about 2 and then shut down. When his siblings see the shut down begin, they are quick to step in so he doesn't get flustered.
Consider the needs of the neediest. Sounds kind of unfair to let the needs of one dictate the course of all, but when you have a child with special needs, this new normal happens rather naturally. One thing I've noticed about my kids is that they are much more in tuned to each other than the average siblings. Over the years, his brothers have voiced their feelings quite freely about the amount of time we spend at therapy, the amount of time we spend in the car, the amount of crying that comes out of one kid. Our oldest put two and two together and he came to us to have an honest discussion about how much we were spending on the therapies, the tutors, the doctors, the schooling. These are things that kids can't fully understand, and probably will never think of as "fair" until they have children of their own, but we can (and do) have honest conversations about these topics.
Enjoy the unique life of being a part of such a special family. So, our special needs family makes allowances where other families don't have to. We have created a loving environment where all of our children are comfortable. Our children have a heart for each other and look out for others' needs without having to be reminded because it has always been something they had to do. I don't know if our family would be as close if we weren't a special needs family. While we do some things quite differently, it works for us.
Make sure to check back for my next post about maintaining friendships (special needs friendships for moms)
Find more about the books I mentioned here:
Make sure to check back for my next post about maintaining friendships (special needs friendships for moms)
Find more about the books I mentioned here:
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