Yesterday I cried.
I didn't mean to. It was a soft cry, gentle tears welling up after a discussion in Sunday School about exhaustion, depression, motherhood, and so on (you'd love my Sunday School women's class, as we are quite free to discuss anything). We as a group were experiencing different levels of the aforementioned, and each one of us has a very different life that we live.
Most days I can hold it together. I have to. After 17 years of parenting special needs children, I try to keep myself in check as much as humanly possible in order to keep the household running half way efficiently. It is above my abilities, and it makes me lean on the Lord. Don't get me wrong--I'm not anywhere near perfect. I'm the last person on this earth who can claim perfection. I do, however, have somethings I'd like to share with you special needs parents out there...from the trenches over here.
You aren't alone.
Seriously, you are far from alone. We are out there. We are in each city, town, rural area, you name it. People like you and me, who are often isolated from the rest of the world while we handle the day to day issues of raising special needs children...there's more like us! You'll not see us carrying signs proclaiming anything. You'll not find us in the coffee shops sipping on the latest fad latte or milling around malls much. You may find us in the waiting rooms of doctors offices, going to and from therapists, sitting in school offices for IEP meetings and occasionally meetings over behavior, maybe a drive thru lane at McDonald's.
Mostly, you'll find us at home.
The majority of us are home bodies. We didn't start out that way. No one really does. We started out with the idea that we'd be like other parents. For some of us, it didn't take long to figure out we would not fit in to a "normal" parenting world. In my case, it started very early in motherhood.
You see, not many daycares and private sitters want to take care of special needs babies or toddlers. It's so much work to care one on one, it takes the provider away from other kids in their care. If the baby or toddler has issues that require monitoring, medications, special anything, the cost goes up significantly or the child is turned down completely. More often than not, mom can't work and provide income needed as there are no options or very expensive options for child care. So begins the home body. In my case, I have been raising not one but 3 special needs children--one biological and 2 stepchildren--and finding care for all 3 so I could work also just is not affordable. In fact we still have to have supervision for them at their ages now, so I can't really work outside until they are adults and in their own living situations.
Most often our kids stand out from the crowd. Everyone sees it. They behave differently. They may use equipment others don't. We pack around monitors, wheelchairs, a child or three who is freaking out with noise and lights, handle meltdowns and aggression. We feel the embarrassment of the other folks looking at us with judgemental looks and comments. It's just easier and safer to stay home. I personally have a habit of looking into the eyes of the special needs mom and smiling, nodding, trying to show I understand. Sometimes I compliment them on something as minute as their blouse or dress or how cute their child is...something, anything to help that mom feel better for a moment. I've even started doing this with young moms who are looking frazzled with little ones and trying to get done what they need to do. Often times they apologize for how their child behaved, and I tell them not to worry, I've been there, and they will grow up. Sometimes just that little bit seems to help relieve tension in mom. Myself, I still deal with frustrating times in the stores when I have any of the kids in tow. They are teens now, but they are not matured to teenage years. I still get those looks, comments, etc even at 15, 16, and 17. I wonder at times if it will end. Each trip is a teaching time about personal space, appropriate behavior in public, how to use money, comparing prices, etc, and those I believe will continue on a long while.
You're not alone. We're out there. You'll find us mostly on social media, blogs, etc. We communicate with each other in the cyber world--we have to in order to find others with families like ours. I'm sure in larger cities there may be groups for families with special needs, but here in rural America, it's not like that. Rural areas tend to have little supports for special needs, which leads us to keep toward home even more.
If you need a listening ear, by all means feel free to contact me here or on Facebook. I'd like to be an encouragement to you if you're needing it. I have been in the trenches for 17 years, and there's no leaving them for a long while. I'm here to support and encourage!
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