How To Effectively Advocate For Your Special Needs Child

If you have a differently abled child, you will undoubtedly spend a large portion of your days making sure that child gets what she needs. It will be exhausting and seem never-ending. It will feel messy, because it is.

You will run out your cell phone minutes, and your patience, dealing with the insurance company. You will encounter doctors who say things so dumb that you question their medical degrees. A government “official” at the US Embassy where you are trying to get your child’s visa paperwork may question your ability to parent your child.

Do not give up.

Here are a few suggestions for dealing with these trying moments:

Wait before you draw battle lines – Your child’s situation, like him, is unique. You may be dealing with people who are unfamiliar with your child’s diagnosis, treatment, etc… Some people are lazy and uncaring and won’t want to help you because it means more work for them. But other people are simply uneducated or uninformed and therefore will default to a “no” or “we can’t do that” position. These people can, and will help you, you just need to give them the information they need to do it.

You are an expert on your child because you live with him, watch him function daily, watch him overcome and adapt. The stranger on the other end of the line doesn’t. Find a point of reference to explain your situation. For us, it’s almost always encouraging people to Google Nick Vuijcic or watch his Youtube videos. Even though Nick and Ying don’t have the exact physical limitations, we find it’s a great starting point. 

Think bulls eye, not buck shot – You aren’t going for a scattered approach here, you’re aiming for dead center and you want to hit the target every time. You believe your child needs 5 classroom adaptive devices? Make a list and prioritize the needs. When they ask about them at the IEP meeting, start with need #1, explain why it’s needed, where to get it and how much the item will cost.

Learn the lingo -  If the issue with the insurance company is the seat elevation system on your daughter’s wheelchair (and I can assure you, it will be!) and you’re slugging it out with them over said seat elevation system, speak their language.  Know that the assigned billing code for the seat elevation system is E2300. Insurance companies bill and are billed using a standard set of alpha-numeric codes called the Healthcare Procedure Coding Systems Code or HPCSC. You can find the applicable codes on your insurance company’s website, in your policy, or here.   A few more insurance terms to know: EOB (explanation of benefits) and OOP (out-of-pocket).

Look like you mean business -  If you mean business, then look like it. There’s no need to go to an IEP meeting in a 3-piece suit, but know that everyone in the room will, at a minimum, be in business casual. Therefore, you, at a minimum, should be too.

Take it to the top – Sometimes the people helping you simply don’t have the power or knowledge base to get you what you need. In that case, the magic words are, “may I speak to a supervisor, please.” Still not getting what you want? Google the email or telephone numbers for a consumer advocate or the CEO of the company. 

Phone a friend -  It’s hard to stay unemotional and factual when talking about your child. You don’t want to recite that her arm is only 2.5 inches long, you want to say things like, she has deep soulful eyes and blast you, you’re making those beautiful eyes cry.

While your passion for your child propels you, it also can work against you in certain situations. If you find it difficult to articulate your position without getting extremely emotional or that your objectivity is skewed by your zeal, then step back. (Remember the most skilled advocates can see both sides of a situation, thus allowing them to more forcefully argue their position.)

In insurance appeals and IEP meetings, you have the right to appoint someone else to speak on your behalf. If you need to, do this.

You’ll be amazed at the number of doctors, therapists and friends who are willing to get down in the trenches with you. People are willing to get their hands dirty and their hearts bruised if you let them.

You do not walk this road alone.

-----

Did you hear about the British Airways passenger who bought tweets to recover his father’s lost luggage? Apparently it worked. You can read about it here.

A Limited Return to Domesticity

On a wholly unrelated note, I found this in the toy chest at my parents house. A few years ago, I would have said, ‘what happened to her hand?’ Now we just call her limb different Barbie and move on.

About seven or eight years ago, I was having dinner with my Nana and her old lady friends. All of the women were at least in their eighties, a few in their nineties. The women started peppering me with questions. "Do you sew?" one of them asked. "No, ma 'am," I replied. "Bake your own bread?" another one inquired. Again, I shook my head. I think the ladies were starting to feel sorry for me, so one of them pitched me a softball, "How many children do you have?" At the time, we didn't have any, so I was forced to admit that to these ladies. "I work," I weakly eeked out. I don't think they were impressed.

This was a generation of women who had sewn many of their, and much of their children's, clothes and canned their own tomatoes. Contrary to what one might expect, most of these women at some point also held down jobs outside the home. They talked back and forth amongst themselves for a few minutes, reminiscing about baking and sewing, what they enjoyed, what they didn't. "I always did like creating something with my hands," one of the women commented before the conversation moved on.

I nodded along obligingly, secretly glad that I wasn't born to that era. I have always enjoyed cooking, but most days, I left early and got home late. The making of dinner wasn't for the enjoyment of the process but for the eating of the results. There was no need to darn socks or "put up" preserves, that's why the good Lord gave us Amazon and Trader Joes.

This summer our garden produced an abundance of zucchini and cucumbers, and we passed them out routinely. We literally handed them over the fence to the neighbors and loaded them in the car to give away while at church and school (all with my non-zuchinni loving husband shouting good riddance).

I got a strange sense of satisfaction from sharing something I'd grown with my own hands. Somehow it felt different than delivering casseroles or even our Yuletide gifts of homemade pot stickers. I think I finally know what my grandmothers' friends were talking about - they were talking about being more than a consumer.

I'm not about to end my relationship with the UPS man. We have a good thing going. He delivers directly to my door, tells me about the best Christmas lights in town and delights my kids by honking when he sees us out walking. But I am going to give a lot more thought to creating with my own hands. One-click purchasing with the mouse isn’t really the only skill I want to pass down.

---------

Want an easy create with your own hands project? These were both quite good.

10 minute homemade pickles

Homemade peach jam

Plus Ashley Ann talks about this same topic here.

When Am I Ever Going to Use This?

In their book Made to Stick, authors Heath and Heath talk about a high school math teacher’s response to the age-old question, “When are ever going to use this?”.  “Never, he told his students, you will never use this…. You do math exercises so that you can improve your ability to think logically, so that you can be a better lawyer, doctor, architect, prison-warden or parent.”

What a great answer. Why didn’t any one ever explain it to me like that before? I might have let go of the grudge I’ve held against my math teacher long before now. (And am I the only one who thinks the career choice of prison-warden or parent side-by-side is funny?)

So often in life, the most difficult moments are the whys. Why did this happen? Why am I going through this? Why won’t this ever end?

I think a high school math teacher has given us all the answer* - so that we’re better prepared for the rest of life.

Not once since school have I had occasion to use Trig or Algebra II.  Thankfully, not once. But all those times when I thought I just couldn’t go one step further, I’ve learned from those moments.

Hindsight and the perspective of distance are a curse, and a beautiful gift. Because of them, we watch seemingly random dots connect and we exhale a collective ‘Ahhh, so that’s why. This was the reason.’ We nod sagely with our newfound insight and we congratulate each other on “unanswered” prayers.

Then the next time we are in so deep that we can see neither the beginning or the end, we moan and sigh at the unhappy fates that have befallen us.  We forget that those moments are the aligning of the stars, the shifting of the planets and that they are just for us.

*Jeremiah 29:11 also contains the same answer, in a different format: “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

The Postman Only Rings Once: Care Package Suggestions For Adopted Children

When I was in college my mom sent me fairly regular care packages and my dad gave me monthly access to his credit card. College was a good thing.

My kids are no where near college-age, but as is common in adoptions, received care packages from us long before we met them. If you get graded on your care packages, then I totally flunked the first time around with each child.

The clothes I sent my man-child were quite snug. I went to the opposite extreme and sent Ying clothes that swallowed her and fell off her left shoulder. (I have since learned how to dress her.) Each time I saw pictures of my kids in their ill-fitting clothes I wondered if the caregivers questioned the competency of the parents coming for these kids. There were no raised eyebrows when we met Luk Chaai and Ying, so perhaps our care package missteps were forgotten and/or are a common occurrence.

The care packages we were permitted to send had to meet with some pretty stringent requirements: flat, silent, fit in a gallon-sized Ziplock baggie and weigh less than a pound. That meant for some pretty creative shopping.

1. 2. 3. 4. 5. 6. 7. 8.

Here are a few suggestions if you are planning a care package:

For both – photo albums, photo blocks (not sure if you can get this to squish flat though) disposable cameras, bi-lingual books, lift-the-flap books, crayons, sun hats, sun glasses, stickers, bubbles, wooden stringing beads (especially good for kids with a  hand/arm limb difference), anything you can record your voice (Build-A-Bear,  K K’s telephone).

For little boys – cars and trucks, plastic slinky

For little girls – nail polish, bracelets, hair bows

Happy shopping!

Yanking Out the Weeds, Pulling Up the Grass

So Ying and Luk Chaai like to do “yard work.” 

It mainly involves cutting the grass and the spider plant with scissors.

Their poor father though, he’s going to have so little to do now this weekend.

Luckily, I bet I can come up with something.

Tedium: Public Enemy Number One

Photo bombed photos make life worth living.

It’s been another week of fighting with the insurance company, there have been two trips to the DMV and the bog of paperwork keeps getting boggier.

To top it off, the sun is baking and I feel uninspired and unimaginative. 

I’m my own worst enemy and I know it.

When I hear people say things like live every day like it’s your last, I’m always a little lost. If it were indeed my last day, I wouldn’t be doing laundry or taking out the trash. Yet I’m pretty sure that there would be a general outcry if tomorrow there are no clean underpants. It’s hard to mourn properly when you lack washed skivvies. Just saying.

I think the message that the  ‘live every day like it’s your last’ people are trying to send is that every day matters,  even the days that are longer than they are deep.

When the muck is knee high and the devil is whispering black nothings in your ear, I find it helpful to chant something.  Here’s my new favorite: Saints are sinners who kept on going. Robert Louis Stevenson

Keep going friends, keep going.

We’ll get there yet.

Love: The Standard Operating Procedure

My Nana is 98. She’s well, old, and sometimes it shows. For example, she thinks Luk Chaai, who is a rather energetic, all-boy, four-year-old male, is a girl.

Nana also has a tendency to repeat things. Ying, who is three, shares the same tendency. It makes for an interesting visit sometimes.

On Sunday, Nana kept asking what happened to Ying’s other arm. Before we got there, Nana had torn apart something. So, Ying, for her part, kept asking why Nana had shredded the item. Apparently my answers satisfied neither of them because they both kept asking. It was good times, especially because about fifteen minutes in Luk Chaai got bored and made no secret of the fact that he wanted to GO. As we were packing it up, I wanted to ask myself why we do it.

But I know why we go. I go because I love my Nana. But I also go because I was taught to. Sometimes it would be a heck of a lot easier to skip visiting, but Nana gets a kick out of seeing Ying and Luk Chaai. Plus, I want my children to know something: love is a policy. 

Shortly after I was married my grandfather became quite ill. I flew home, leaving my new groom solo for our first Thanksgiving (thankfully friends invited him over). I went to my grandfather’s nursing home to pick him up. I hugged him and told him I was there to take him to Thanksgiving dinner. “I can’t go with you,”  he told me. When I asked him why not he said said he’d already told the woman in the yellow sweater he would go home with her. I looked around. There was no woman in a yellow sweater.

Love is a policy.

This wasn’t the first time my grandfather had become confused. Many months before he’d mistakenly believed that his neighbor, John, was acting nefariously. When the neighbor came over to speak to my grandfather, my grandfather snubbed John. About 20 minutes later, my grandfather’s lucidity returned and he realized what he’d done. He asked me to go next door with him, where he apologized to John.

I learned something that day.

Love is a policy.

When things aren’t easy, when life gets complicated, when getting out is easier than staying in – love is a policy.