Monday, May 7, 2012

9 Ways You Can Help a Special Needs Parent


Remember this article that I posted a month or so ago?  It talked about some important things to know about a special needs parent.  This article was so well-received that the author has written a sequel, of sorts, explaining how people can help a special needs parent.  I have written some of my own comments to each item in the list.  These comments are in red so as not to confuse anyone!  :)
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When I set out to write 7 Things You Don't Know About a Special Needs Parent, I was a little nervous. I thought to myself, Who am I to speak for all special needs parents? My situation felt unique, and maybe no one would relate to what I was going through. I was encouraged by this post, though, and thought I would at the very least write it for myself, and share it with my friends, since these were hard things for me to talk about.
I have been completely overwhelmed with the response to this article -- huge numbers of Facebook shares, and special needs parents from around the world commenting on the article, tweeting and emailing me their stories and their appreciation for voicing their hard-to-voice emotions. I've learned about rare conditions I'd never heard of, cried reading personal stories about affected children, laughed out loud at some feisty responses to some of my points. Gratitude doesn't even begin to describe how I've felt about this whole experience.
More importantly, the response has made me reconsider my third point, that I feel alone. I realize that I really am not alone. Thanks to technology, an incredible worldwide community of special needs parents is only a tweet or comment or blog post away. Many thanked me for writing the article and making them feel less alone; now I thank them for making me feel less alone. (And thanks to HuffPost for giving us this platform.)
I thought I would follow up with another post, one that I've had in my heart to write for a while. The first article expressed some of the emotions related to special needs parenting, with the goal of building understanding. So others know how much we go through -- now what? This article offers practical tips on how typical folks can relate with and help special needs parents.
One of the hardest things for me to learn as a special needs parents was how to ask for the help and support I needed. And frankly, sometimes it felt like a luxury, when my more pressing concerns were getting through the workday and the next therapy or doctor's appointment.
But communicating and relating to each other is really important. Although a typical world can be miles apart from a special needs world, I will never give up on trying to build bridges and understanding, because our combined worlds won't grow otherwise. I don't want to be a self-enclosed bubble (although I was for a long time). I don't want to grow apart from my friends with "typical" kids... especially when many of them sincerely want to know how to be there for me.
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{Me and my son Jacob in a doctor's office. He has a disorder of the 18th Chromosome}
So, here's my list of nine ways you can help a special needs parent -- or me, at least. Feel free to chime in and add your own.
1. Talk about your kids' personalities, not their accomplishments. I mentioned in the last post it can be hard to be around typical moms, especially when they're bragging about their kids' accomplishments. When I hear a mom tell me that her 3-year-old knows all the words to her favorite book by heart, it can hurt when my son can't speak. And it doesn't give me a lot of room to say anything in return. I'm not inclined to mention one of my son's accomplishments, like he made the "B" sound the other day, only to be met with compliments that can feel patronizing. But here's the thing: I'd love to tell you all about Jacob's personality. I want to share with you how funny and weird he is, how mischievous he is, like how he sticks his finger in his nose all the more when I say, "Ew!," just to get a reaction from me. How he is affectionate, silly, and determined to get his way. How he kisses fuzzies he finds on the ground, and is obsessed with elephants. I want to know about your kid's personality, too, which is probably more interesting than his or her achievements, anyway. No matter how impaired a child is, he or she has a personality and a spirit, and the parent knows it. Let's start talking about who our kids are rather than what they can do.
Abby is such a little firecracker, I think it's pretty easy to talk about her personality.  I do love when strangers comment on her sweet chubby cheeks or beautiful eyes, or note that she is "into everything!"  I certainly don't mind questions about her trach or machines, but it's nice (for us, for Abby, and for Caleb) when people acknowledge Abby as a person as well.
2. Insist on helping. No matter how "together" I appear on the outside, I can always use help. In fact, sometimes appearing "together" is the only way I can make it through the day myself. You'll notice I didn't write "offer to help." Offering to help is lovely, don't get me wrong. But from experience, I often have a hard time accepting help, even when I really need it. It's odd -- why am I trying to act like a superhero when I actually need help? Sometimes I doubt the offer, thinking they just feel bad for me or are just being polite. But if you insist on helping, it's fabulous because I feel like you will not take no for an answer -- it takes a weight off me. In terms of how to help, you can always ask, "How can I help?" and if a special needs parent gives you some suggestions, that's great. But if you find that this question is getting you no response, it's not because he or she doesn't need help. It's because she doesn't have the energy to figure out what to tell you. So if you love this person, be a detective and find out how you can help (and make sure it's actually helpful to the person). "I'm sending you a few cooked meals this week." "I found a few great neurologists in your area." "I'll drive your kids to practice this weekend." "I got you a housekeeper for a few hours." One way to help that will probably be universally accepted? Help watching the kid so the parent can have a break.
I was so appreciative of the ones who just jumped right in to help when we were in the hospital with Abby or right after we got home!  While the "let me know if you need help" offers were sweet, I often didn't even know what to ask for!  It was so wonderful when someone just jumped right in and made a meal, picked Caleb up from school, vacuumed, etc.  I hated asking.
I don't really feel like I need this sort of help now (unless Abby is in the hospital--then I do need help--especially with Caleb!) because we've figured out our normal and we're rolling with it.  
3. Stop with the maxims. I understand that people just want to offer hope and encouragement and don't know what to say sometimes. But I never knew a cliche or maxim that suddenly made everything better. Examples of things I've heard that are pretty frustrating: "He'll be fine." (How do you know this? And why are you diminishing what I'm going through?) "Everything happens for a reason." (A personal non-favorite of mine.) "He'll get there." (Again, how do you know this? What if there are some things he will never be able to do?) I sense sometimes that the maxims are really to make the speaker feel more comfortable with the situation -- but they don't help me. Please lose the maxims. Just be there for me. Tell me my son is adorable (it never gets old). Listen to me, cry with me, laugh with me. I don't need canned wisdom, I need friends, ears, and helping hands.
I'm back and forth on this one.  Sometimes the "she'll get there" comment makes me groan, especially when it came to the walking.  I didn't want her to get there; I wanted her to be there!  (Side Note:  I LOVE that those last few sentences are in PAST TENSE now!!!)   It really depends on my own mood, I guess.  Most of the time, they really don't bother me.  I've learned that people are just trying to be nice and they don't really know what to say, so a canned response is better than none!  
4. Extend me some grace. While in some ways my parenting experience is the same as a regular mom's, in many ways it's not. I can't begin to explain how hard it can be sometimes. Sometimes I'm exhausted from a rough week of doctors' appointments, or maybe you just caught me in a sad moment wondering if Jacob will ever live independently, or what will happen to him if I go first (sometimes this can be triggered by the smallest, most innocuous thing, like seeing a TV commercial or overhearing a conversation). If I am grumpy, snap, forget your birthday, cancel plans, or otherwise less than saintly, I hope you will just extend me some grace, and give me the benefit of the doubt.
This goes for anyone, whether he or she is a special needs parent or not.  We all need a little grace!
5. Stop complaining about your kids. OK, we all get a license to complain about our kids sometimes (special needs parents included!). But please be sensitive to what you complain about to a special needs parent. One of my dearest friends with a typical and sensitive child would complain to me that her daughter had so many requests: she wanted her eggs cooked just this way, her pillow cold, her car window rolled down just this much. I told her that I would kill for Jacob to be able to tell me those things, so that I could do them for him. He's non-verbal at almost 4 years old and lacks the motor skills for enough sign language or the iPad (for communication apps), so it's painful when I see him so frustrated and unable to express himself. Don't complain to a mom of a non-ambulatory child that your kid ran around and knocked over your favorite vase. Save those complaints for your other friends, or don't make them at all. Because know that your complaint about your child might be our deepest wish for what our child could do.
Yep.  Agreed.  And I'm definitely guilty of being the complainer as well--especially pre-Abby.  And while I'm not always thankful that Abby got into the Lock and Lock container, dumped out all of the Oreos, and crushed half of them again, it does make me smile that she is doing things that are SO cognitively on-target!
6. Ask me how I'm doing. Often the focus is so much on our special needs kids, that the parents are overlooked. And guess what? We are driving the boat. Without us, our kids would be in trouble. The parents need tending to as much as the kids do. My friends often ask me about Jacob (see #7 here for a more helpful way to ask), which I love, but it would also be nice if occasionally they asked me about how I'm doing -- not in my career, or my hobbies or dating life, but how I'm doing in this role as a special needs parent. I don't often get to talk about how hard it can be, or how I'm tired, or how I had a good day or bad day. It might just be me, but a sincere "How are you doing handling everything?" once in a while, and readiness to hear an honest answer is all I need to feel like someone cares. Alternatively, sometimes it's just good to talk about other stuff ... so please go with it if I do.
I do definitely appreciate the people who ask me this.  Just don't be surprised if I cry, even if things are good.  It's what I do! :)
7. Coercively pamper me. I don't know any mom, special needs or not, who will say no to a beautiful bouquet of flowers or a massage. I learned the hard way as a single parent that no one was going to pamper myself but me, so I got good at treating myself (if you're a single parent, read this to learn how to take care of yourself). And my son is much better for it -- he has a happy and energized mom who feels grateful that blue cheese tastes so good, or that her nails look nice (for some reason I always feel like a happier mom when I'm a little more put together!). Call this a shameless plug for more treats in life since the world's cards are stacked against us. A little treat with a note like "You do so much for Em, just wanted to make sure you're taken care of too" will probably do wonders for a parent's day, or week.
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Ehh, that's not really me.  I'm not a pamper me kind of a gal.  I'm not very girly and was too weirded out to truly enjoy the one massage I got with a gift certificate I won once.  I'm practical through-and-through, so pampering to me is someone cleaning my house!!!!  :)
8. See my child. Don't stare. But also don't look away or avoid. My deepest wish is for you to see my child the way I see him. Look into his eyes. Observe him with love. See him. Get to know him. Include him, hang out with him, get your kids to do the same. Learn how to treat him with dignity and the profoundest respect, because a wise woman once told me that in some cultures, special needs children are seen as the human form closest to perfection and God, because they are no longer here on earth to learn, but to teach. In these cultures, the elders all bow down when a special needs child enters the room. Oh, but that we might become one of those cultures! One of the most hurtful things for me as a special needs parent has been seeing others, even my friends, uncomfortable or awkward around my son. Please find a way to start really seeing and loving my child. It might start with spending more time with him.
I've talked about this before.  You know how I feel about that one!
9. Support my cause. At the very least, you can support my cause. I might not be close enough to some people in my life for all of the above points to apply, but it's meant so much to me when colleagues donated or ran to support my fundraising efforts for my son's school. You can speak up when other people say things like "retarded," "short bus," or "as long as it's healthy" and explain why it's insensitive. You can stop bullying or teasing if you see it. You can stop being impatient with the checkout clerk who seems to be moving more slowly. You can stop gaping or making rude comments at kids who look or behave differently out in public. You can stop making fun of disabled people (it sounds horrible, but we do it much more frequently than we realize)--or pitying them. You can cast special needs kids in advertising campaigns, TV shows, movies (hint: Jacob loves the camera, he's a total ham!). You can make an active effort to have special needs kids be a part of your typical kids' lives. You can get to know us.
Love this one!  RMH is incredibly important to us, and we love when people show their love for us by supporting RMH.  It means a lot to us when people collect soda tabs, go with us to volunteer, donate money or materials, etc.  I also liked how she mentioned about speaking up against insensitive phrases.  
Moreover, you can stop seeing people's worth in their abilities -- their intelligence, talents, looks, achievements. You can start doing what's actually the harder but better thing: knowing and loving them just where they are.
That's what my son has taught me to do.
That's how I hope you'll come alongside me.
This post is dedicated to all the special needs parents out there -- you amaze me and I'm honored to share this journey with you.

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