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This week is Micah's very favorite week of the entire year. He is at church camp, learning about Jesus, and swimming daily. That boy loves God and water, in that order. He's been going through a phase, though, where he just won't do anything without a sibling, and was insistent that Luke go to camp with him. Fortunately, Luke is a counselor, and is always assigned to Micah's grade, for Micah's sake.
Luke was at camp last week, went away with us for the weekend, and woke with a headache on Monday morning. I'm sure it's a result of mild dehydration and moderate exhaustion. We informed adult staff that he'd need down time in order to be functional this week. He was allowed to nap during swim hours on the first day.
Nobody told Micah that Luke was going to nap. Micah had a fairly major melt down because his brother was gone and he was alone at camp. Surrounded by people he knows. In a place he's been to before. At the swimming pool, which he loves second only to God.
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Despite the fact that Micah is now a high school student, he's not a high schooler at all in terms of.....life. These are things that we just can't explain to people. We try, sometimes. Our experience has taught us that people look at us with a very clear expression of, "oh my gosh, let your kid grow up already, you freaky helicopter mom," We have learned to grow the thickened skin of a rhino many long years ago, so things like this don't bother us. They make us laugh, because if you're going to judge me, I'll judge you right back. I judge that you have absolutely no experience with special needs children, and you are close-minded enough to think that because your child would act in a particular way (and you would react accordingly) that I'm exaggerating or being dramatic in telling you how vastly different our experience is with Micah.
We've mostly stopped trying to explain these things to people. They don't really care, obviously don't understand, and will very rarely be in a situation where it would be need-to-know information for them anyway. It is a source of stress for us any time Micah is away from us, though. We can't predict how he'll act in any given situation. There are no givens at all, for anything. We take each moment and each circumstance as they happen and roll with them, because it's how parents of special needs kids live.
I'm fairly certain that the majority of Micah's melt downs come from lack of communication, both to him and from him. If you think of a normal child, they have 2,085 questions to ask about any given thing.
Where are we going?
Why are we going there?
What are we going to do?
How long will we be gone?
Will we stay in a hotel?
Is there going to be a swimming pool?
Will I know anyone there?
Are we there yet?
Micah can't ask these things. Imagine a life where you are simply led, blindly, into new and unsure situations. It would be scary, and unsettling.
Micah has a hard time understanding intangible concepts. A futuristic "mom and dad are going away in September" would be met with, "can I have a hot dog?" He doesn't grasp "September" other than a word in a recitation of months. "Next month" could be 1:00 this afternoon or the year 2049. Time is vague to him, as are many other things. For this reason, we don't explain so much of what's going to happen. We need to make more of an effort in doing this, because someday he'll grasp it. But for now, we just pack his bag, and tell him if there will be a pool or if he's going to a place he's been before and can relate to. If not, we find things he'll understand. "We're going on vacation. There'll be a pool at the hotel and you can play at a park by the water." Forget the fact that it's a week long vacation (per se) and he'll see and do and go every single day. Frustration begins to set in for him, because every day is new and different and he doesn't know what to expect. He's just overwhelmed with the newness of things, and life isn't stable anymore. He has a great time, mind you, but he's living with stress. It's no wonder he has meltdown at some point. It's a lot to deal with, emotionally, not knowing where you're going or what you're doing at any given hour, and not even being able to sleep in your own familiar home at night.
This is the reason we chose to move Micah to the high school early. Micah is going to really feel the loss of his brother, away at college. He's recently started making announcements to all who are home that, "Becky is home!" (or whoever it is that just walked in). He's very aware of his siblings, and misses them when they're gone. Not having one home for months on end is going to be very difficult. The fact that Sam and I are going to be away in September will only magnify this tenfold. He handles the stress of absent siblings quietly, but the absence of parents is a loud and verbal meltdown coupled with defiance. He just loses control. His high school teacher is not understanding at all about these things, and has already given me the helicopter mom look in regards to situations. I love her dearly for pushing Micah academically and requiring him to mature into an adult during his high school years, but I do not love that she is unsympathetic to situations that require a little more patience and understanding.
My son left for college today, and I'm stressing, instead, that Micah will not do well when he starts school next month. The priorities of special needs parents are very out of the normal, but we have learned to rejoice in the maturity of kids who can mature in independent ways. We're so grateful for a son who can embark on a 14 hour drive and take himself to college as a freshman. We're crazy proud of him for taking the opportunity to get a higher education and life experience away from home. We aren't concerned in the least that he'll be several states away, because he's capable of asking questions and understanding situations, and knows how to get help when he needs it. Micah has taught us to focus on things that others never think of, and we're grateful to have been in The College Of Greater Understanding these past 12 years.
But we're still parents, and the emotions of the week have been all over the board.
2 comments:
Although I haven't raised a special needs child, we have watched 3 of our children grow up and leave home and start their own adult lives. It is an emotional time, but it gets easier to accept. I still have 5 children at home though, and 3 of them are still in elementary school, so I have awhile until my nest is empty. My thoughts and prayers are with you and your family during this transition.
I agree 100% with the special needs part of this post, eric is non verbal and we do the same, just tell him as much as he needs to know. He is off to junior high this year and I am scared also, but praying to god it works out for the best. Love your blog my friend keep them coming.
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