The Life of Toniell: May 2012

This article isn't meant to be pushy but just to get out how things can make parents feel being around parents of "normal" children. This is the first time I've seen it written out, even though there isn't a day that goes by that one of these don't cross my mind.

WhenI set out to write 7 Things You Don't Know About a Special Needs Parent,I was a little nervous. I thought to myself, Whoam I to speak for all special needs parents? My situation feltunique, and maybe no one would relate to what I was going through. I wasencouraged by this post, though, and thought I would at thevery least write it for myself, and share it with my friends, since these werehard things for me to talk about.

Ihave been completely overwhelmed with the response to this article -- hugenumbers of Facebook shares, and special needs parents from around the worldcommenting on the article, tweeting and emailing me their stories and theirappreciation for voicing their hard-to-voice emotions. I've learned about rareconditions I'd never heard of, cried reading personal stories about affectedchildren, 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 wholeexperience.

Moreimportantly, the response has made me reconsider my third point, that I feelalone. I realize that I really am not alone. Thanks to technology, anincredible worldwide community of special needs parents is only a tweet orcomment or blog post away. Many thanked me for writing the article and makingthem feel less alone; now I thank them for making me feel less alone. (And thanks to HuffPost for giving usthis platform.)

Ithought I would follow up with another post, one that I've had in my heart towrite for a while. The first article expressed some of the emotions related tospecial needs parenting, with the goal of building understanding. So othersknow how much we go through -- now what? This article offers practical tips onhow typical folks can relate with and help special needs parents.

Oneof the hardest things for me to learn as a special needs parents was how to askfor the help and support I needed. And frankly, sometimes it felt like aluxury, when my more pressing concerns were getting through the workday and thenext therapy or doctor's appointment.

Butcommunicating and relating to each other is really important. Although atypical world can be miles apart from a special needs world, I will never giveup on trying to build bridges and understanding, because our combined worldswon't grow otherwise. I don't want to be a self-enclosed bubble (although I wasfor a long time). I don't want to grow apart from my friends with"typical" kids... especially when many of them sincerely want to knowhow to be there for me.

So,here's my list of nine ways you can help a special needs parent -- or me, atleast. Feel free to chime in and add your own.

1. Talk about your kids' personalities, not theiraccomplishments. I mentioned in the last post it can be hard tobe 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 thewords to her favorite book by heart, it can hurt when my son can't speak. Andit doesn't give me a lot of room to say anything in return. I'm not inclined tomention one of my son's accomplishments, like he made the "B" soundthe other day, only to be met with compliments that can feel patronizing. Buthere's the thing: I'd love to tell you all about Jacob's personality. I want toshare with you how funny and weird he is, how mischievous he is, like how hesticks his finger in his nose all the more when I say, "Ew!," just toget a reaction from me. How he is affectionate, silly, and determined to gethis way. How he kisses fuzzies he finds on the ground, and is obsessed withelephants. I want to know about your kid's personality, too, which is probablymore interesting than his or her achievements, anyway. No matter how impaired achild 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.

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 throughthe 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 oftenhave a hard time accepting help, even when I really need it. It's odd -- why amI trying to act like a superhero when I actually need help? Sometimes I doubtthe offer, thinking they just feel bad for me or are just being polite. But ifyou insist on helping, it'sfabulous because I feel like you will not take no for an answer -- it takes aweight off me. In terms of how to help, you can always ask, "How can Ihelp?" and if a special needs parent gives you some suggestions, that'sgreat. But if you find that this question is getting you no response, it's notbecause he or she doesn't need help. It's because she doesn't have the energyto figure out what to tell you. So if you love this person, be a detective andfind out how you can help (and make sure it's actually helpful to the person). "I'msending you a few cooked meals this week." "I found a few greatneurologists in your area." "I'll drive your kids to practice thisweekend." "I got you a housekeeper for a few hours." One way tohelp that will probably be universally accepted? Help watching the kid so theparent can have a break.

3. Stop with the maxims. I understandthat people just want to offer hope and encouragement and don't know what tosay sometimes. But I never knew a cliche or maxim that suddenly made everythingbetter. Examples of things I've heard that are pretty frustrating: "He'llbe fine." (How do you know this? And why are you diminishing what I'mgoing through?) "Everything happens for a reason." (A personalnon-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 sometimesthat the maxims are really to make the speaker feel more comfortable with thesituation -- but they don't help me. Please lose the maxims. Just be there forme. 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 helpinghands.

4. Extend me some grace. While insome ways my parenting experience is the same as a regular mom's, in many waysit's not. I can't begin to explain how hard it can be sometimes. Sometimes I'mexhausted from a rough week of doctors' appointments, or maybe you just caughtme in a sad moment wondering if Jacob will ever live independently, or whatwill happen to him if I go first (sometimes this can be triggered by thesmallest, most innocuous thing, like seeing a TV commercial or overhearing aconversation). If I am grumpy, snap, forget your birthday, cancel plans, orotherwise less than saintly, I hope you will just extend me some grace, andgive me the benefit of the doubt.

5. Stop complaining about your kids.OK, we all get a license to complain about our kids sometimes (special needsparents included!). But please be sensitive to what you complain about to aspecial needs parent. One of my dearest friends with a typical and sensitivechild would complain to me that her daughter had so many requests: she wantedher eggs cooked just this way, her pillow cold, her car window rolled down justthis much. I told her that I would kill for Jacob to be able to tell me thosethings, so that I could do them for him. He's non-verbal at almost 4 years oldand lacks the motor skills for enough sign language or the iPad (forcommunication apps), so it's painful when I see him so frustrated and unable toexpress himself. Don't complain to a mom of a non-ambulatory child that yourkid ran around and knocked over your favorite vase. Save those complaints foryour other friends, or don't make them at all. Because know that your complaintabout your child might be our deepest wish for what our child could do.

6. Ask me how I'm doing. Often thefocus 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 introuble. The parents need tending to as much as the kids do. My friends oftenask 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 howI'm doing -- not in my career, or my hobbies or dating life, but how I'm doingin this role as a special needs parent. I don't often get to talk about howhard it can be, or how I'm tired, or how I had a good day or bad day. It mightjust 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 feellike someone cares. Alternatively, sometimes it's just good to talk about otherstuff ... so please go with it if I do.

7. Coercively pamper me. I don't knowany mom, special needs or not, who will say no to a beautiful bouquet offlowers or a massage. I learned the hard way as a single parent that no one wasgoing to pamper myself but me, so I got good at treating myself (if you're asingle 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 feelsgrateful that blue cheese tastes so good, or that her nails look nice (for somereason 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 arestacked against us. A little treat with a note like "You do so much forEm, just wanted to make sure you're taken care of too" will probably dowonders for a parent's day, or week.

8. See my child. Don't stare. Butalso don't look away or avoid. My deepest wish is for you to see my child theway 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 withdignity and the profoundest respect, because a wise woman once told me that insome cultures, special needs children are seen as the human form closest toperfection and God, because they are no longer here on earth to learn, but toteach. In these cultures, the elders all bow down when a special needs childenters the room. Oh, but that we might become one of those cultures! One of themost 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 tostart really seeing and loving my child. It might start with spending more timewith him.

9. Support my cause. At the veryleast, you can support my cause. I might not be close enough to some people inmy life for all of the above points to apply, but it's meant so much to me whencolleagues donated or ran to support my fundraising efforts for my son'sschool. You can speak up when other people say things like"retarded," "short bus," or "as long as it'shealthy" and explain why it's insensitive. You can stopbullying or teasing if you see it. You can stop being impatient with thecheckout clerk who seems to be moving more slowly. You can stop gaping ormaking rude comments at kids who look or behave differently out in public. Youcan stop making fun of disabled people (it sounds horrible, but we do it muchmore frequently than we realize)--or pitying them. You can cast special needskids 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 bea part of your typical kids' lives. You can get to know us.

Moreover,you can stop seeing people's worth in their abilities -- their intelligence,talents, looks, achievements. You can start doing what's actually the harderbut better thing: knowing and loving them just where they are.

That'swhat my son has taught me to do.

That'show I hope you'll come alongside me.

By Maria Lin

We went to the GI on Monday. The news wasn't so good, but it was what I expected. She stopped gaining weight since we lowered her Pediasure intake during the day. It's been about 6 months that she has been around 25 pounds. So we had to up her intake during the night. We have to increase it a little at a time but she will eventually be up to 3 cans instead of 2. She will keep drinking one can during the day along with eating whatever she wants.

It's hard to fatten a child up in a world that is trying to go fat-free. Most cheeses are made with skim milk and same with yogurt. I'm trying to look for fattening things and don't really find too much except for unhealthy food. Obviously I don't want to have my child eating only junk food.

So I guess the questions will be arising is why she has such trouble gaining weight? Is there something medically wrong with her that she can't? Will she be on the tube forever? I'm not seeing an end in sight any time soon. She has had it for a year already. Boy time flies. What does this mean when she starts school? It's hard to picture her in kindergarten with a tube, but I don't see it any other way. She has had several tests done and nothing showed signs of their being a medical problem, but I'm sure they have more tests on their mind.

So now we just have to sit and wait to see if she gains weight. We have to do a weight check in a month.