The other day, a new friend posted on her blog about compassion. I realized myself 'that's it!'. I have been struggling with trying to explain where I am and what I need. Blogs tend to be candid and honest. So, the things that I write at times seem very hard, frustrating and negative.
I would even feel sorry for myself by the time I finished reading what I had written. I am sure many people felt similarly bad. It’s something parents of kids with special needs constantly contend with: extreme pity. I’ve seen that look—the cocked head, the “awwww” when I say that my son has a rare disease. “Wow, that’s tough,” people have said. “It can’t be easy for you.” At times when I start explaining, they tune out because its beyond their comprehension. I know they don't do it on purpose and don't blame them but tend to wrap it up.
And it’s true: My life isn’t always easy. Sometimes, it’s pretty hard. That’s why it’s comforting to trade notes with parents who have kids with special needs. But what I don’t want is pity from parents of so-called typical kids. Pity means that I stand in an inferior position in life than they do. Pity means that I’m dealing with a tragedy. Neither thing is true.
And so, let me explain why you shouldn’t necessarily feel sorry for me and other parents of kids with special needs. Although if you’d like to take us out for mani-pedis and/or give us large chunks of money, that would be fine.
Don’t feel sorry for me because my life is tough. So, yes, I am like a human Google calendar, juggling a whole lot of therapies and doctors appointments for my son. But I am lucky that I’m able to get my son, Thomas, most of the services he needs. While parents of kids with special needs have financial hardships other parents don’t have, a lot of us discover resourcefulness, smarts and drive we never knew we had. I am learning about new resources and opportunities every day to pursue. We push and advocate and push some more for our kids. We learn to ask for help where we would have been too proud to do before. So if you hear of something, please share.
Don’t feel sorry for me because I’m not living the motherhood dream. Yes, things turned out differently than I expected. My son brings me as much joy as any child brings a mother. Thomas has two older brothers. And all of my kids make me laugh, give me pride, make me thankful every single day that they are in my life. So maybe I’m not living the Hollywood mom dream but a tear-jerker, this ain’t.
Don’t feel sorry for me because my child isn’t a “typical” child. Thomas has challenges other kids do not, but in many ways he is like other kids. I get the full range of kid-ness—the cute way he moves when he dances, the thrill of progress in therapy, the tear-my-hair-out moments of sibling rivalry. The whole shebang. I love this child. I wouldn’t want any other. His brothers have no clue that there is anything different about him if that tells you anything about our home life.
OK, you may feel sorry for me because I have eleventy billion forms to fill out and receive medical bills almost daily.
This is not to say that I never feel bad for myself. At times, I do, like when every one is off enjoying themselves on break and having a good time and I am running to appointments as usual. I use to feel sorry for myself more often and really its only been four months since the official diagnosis so I try to cut myself some slack. Its not easy, but I don't like to wallow in it. I like to pick myself up constantly and keep moving forward. I am blessed beyond means and love my family and God more than ever could be imagined. I want to be a light and an instrument in a positive manifesting way!! "Faith makes things possible not easy." Luke 1:37
Again, I know I am getting lengthy again but I came across another blog that hit me in explaining how to be a friend to a mom who has a special needs child. Fellow moms, please feel free to add or elaborate. The following is copied from the site (http://www.starkravingmadmommy.com/2011/08/how-to-be-friends-with-special-needs.html):
How to Be a Good Friend to a Special Needs Parent
- Offer to babysit. While I certainly don't expect my friends to constantly provide me with free childcare, I am immensely grateful for a break once in a while. If your friend has more than one child that she has to schlep to therapy appointments for just one kid, offer to watch the neurotypical child so that she can focus on the appointment. Or offer to babysit the autistic child so she can have one-on-one time with one of her other children. Or offer to babysit both so she and her husband can go out to lunch. Or so she can get a hair cut, or take a nap, or stare at the wall for an hour. I am stretched ten ways to Sunday and there is just not enough of me to go around. I need help.
- Suggest our families do something together. Our family is kind of a production. Our kids are very well behaved, but let's face it: one of my daughters has ADHD and other "quirks," two of our daughters have severe anxiety, and our five-year-old son is emotionally 36 months old and still in Pull-Ups. And then this summer I had these thyroid problems. I get it. It's always "something" with us, and frankly, it turns out that not everyone is emotionally equipped to deal with our family. Let's just say we're not invited over for dinner very often.
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| "Um, we know how busy you always are. And we figured you wouldn't have a good time, anyway, what with ... you know, your kids." |
- Be flexible. My friends are amazingly understanding that sometimes playdates are cut short (or canceled) due to unforeseen meltdowns. I already feel stressed and frazzled and like kind of a jackass when that happens, so it's awesome when my friends act like it's no big deal.
- Be open to just listening. Sometimes I just need to vent. Okay, a lot of times I need to vent.
- Advice ... it's all in how you present it. It really is okay to make suggestions and share your expertise. I happen to be fortunate enough to have friends who are teachers, or counselors, or just experienced parents. I am totally into hearing "I don't know if this will work for you, but what has worked for us is ..." Yes, I think we've tried everything. But there's the chance that you've got some gem of a piece of advice that I don't know about. While I'm not thrilled to be told I should do, I always love hearing your thoughts on what I could do. Plus, sometimes I'm so close to my own situation that I can't see the forest for the trees; I start attributing everything to Little Dude's autism, that I forget that sometimes he just gets a cold. So when you say, "have you taken his temperature?" it helps me. Thanks for being my reality check.
- Tell me I'm doing a good job. As I mentioned in my post Top Ten Things You Should (and Shouldn't) Say to the Parent of an Autistic Child, we can't hear enough of "wow, you're really on top of things for your kids. It must be hard, but it seems like you're doing a really good job." Other things we like to hear include "your love for your kids really shows," "it's awesome that you're such a good advocate for your child," and "here, have this big glass of wine."
- Ask me for help. Please don't think that I'm too busy to be a good friend to you. I still want to hear about what's going on in your life. I can still watch your kids, bring you ginger ale when you're sick, drive your daughter to Girl Scouts, and listen to you vent about the stress in your life.
Life is always changing and always moving forward. We have to change and adapt but always be true to ourselves. Have compassion for those around you, treat them as your equal and show them the love that you want someone to show you. You can make a difference to someone else!
When its all said and done, I am still me trying to be the best person I can be. Keeping my head held high and always seeing the positive and beauty in this life that God has made for us. And I deal with things just like you, I pray and ask you to pass the chocolate and wine!
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