Saturday, September 6, 2014

The Child You "Might" Have Had?

I want you to imagine something with me. It's not a hugely unrealistic scenario - in fact, it might even be something you or someone you know has actually been through, or similar.

You and your husband have a healthy son who is three years old and perfect to you in every way. After a few months of trying, you discover you are going to give him a baby sister. You and your husband decorate the nursery, pulling out all the baby things from when your son was born, and read books to him to prepare him for the baby's arrival. Everyone is very excited and can't wait to meet her.

Maybe you get the news when she's still in the womb.

We think your baby may have Down syndrome.

We're seeing signs of cystic fibrosis.

(At this point you might be pushed to consider abortion. I'm not sure of the statistics for other disabilities, but the abortion rate for Down syndrome is upwards of 90%.)

Or maybe you don't get the time to fret and worry too much before you even meet your daughter. Maybe you hear it when she's born, before you even leave the hospital.

Your child failed the hearing test.

We think there may be some bone density issues.

It could even be that you don't hear these things until she's a toddler, or maybe elementary school age.

It looks to me like classic autism.

We've ruled out everything but child-onset bipolar.

So what do you do? You probably reach out for support, especially if the disability is something you don't know very much about. You want to hear from other parents raising a child with that disability and how they manage certain things, what resources are out there, and what sort of prognosis is expected for your child. And in reaching out, you probably hear one thing over and over from parents who have "been there": grieve for the child you might have had.

I'm not going to tell you that.

Let's go back to your son for a minute. He's three and he does very well in preschool. As he grows up, he's going to be a good student all his life, get a scholarship to a good college, and become an engineer.

You're proud of him, aren't you? Why is that?

Why aren't you grieving where your son is concerned? You might have had a child who grew up to be an astronaut or a lawyer. You might have had a child who had lots of friends, or volunteered on the weekends, or got his first job at fourteen, or went to Harvard, or spoke five languages...

But none of that matters to you, does it? That's because you have your son. You're happy to have your son. You're not grieving for the child you might have had because you have this child right in front of you.

"Oh, but my daughter has this disability and they think she might never learn to walk/be able to hold down a job/live on her own..."

Fine. I want you to go find your daughter, no matter her age, and tell her how sad you are that she wasn't born as someone else.

"But I love my daughter. I just wish she could do what my son did."

If you love your daughter, you need to love everything that makes your daughter who she is. Whether you heard her diagnosis for the first time before she was born or when she was just hours old or when she was two or twelve or sixteen - that is part of who she is.

And unless there was a horrible accident involved, it's been part of who she is from the moment she was born. You have the same child, but now you know more about that child.

Forget the child you might have had. This is the one you do have. How are you going to help?

Friday, August 22, 2014

Holland Has Tulips

There's a story that parents of kids with special needs like to pass around. It's called "Welcome to Holland," by Emily Perl Kingsley. It's very short, so if you haven't already read it, it won't take more than a few minutes to do that now.

I will admit the wording of the story in some places isn't the best. Even so, as I was reading it, there was one bit that stood out to me (emphasis mine):

"The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place."

And that's what occurred to me as I was browsing RR's new additions and came across the profile of a little girl whose screen name was none other than Holland

Of course, adopting a child with special needs is different than having a child with special needs. With adoption, you usually know right from the start that you aren't going to Italy. That sounds beneficial at first. You get more time to prepare for Holland, right?

Well, yes. You also get more time to worry and read up on symptoms your child may never have, health problems they may never exhibit, and so on. It's much easier to lose the child in their disability when you know you're going to Holland.

Why can't we just let Holland be Holland? Why can't we prepare for Holland the way we'd prepare for Italy? You wouldn't go on a week-long vacation worrying that it might rain the entire week, and you wouldn't keep yourself from having a baby just because you're worried they might get colic, or acid reflux, or have problems nursing.

But if it did rain the entire week? That doesn't mean you can't enjoy your vacation. If you found out breastfeeding (or something else important to you) would be impossible? That wouldn't keep you from making the best of things. You'd take it as it came.

Please don't love Holland in spite of it not being Italy.

Love Holland because it isn't Italy, and because Holland has tulips.

Saturday, July 12, 2014

When Your Child's Stimming or "Orphanage Behaviors" are Okay.

I can already hear the controversy rising up at the title of this post. Umm, hello? I can't let my child stim or do things that aren't normal! Are you crazy?

I know. It's going to sound crazy at first. Hear me out.

For those who aren't familiar with the terms, "orphanage behaviors" is the term adoptive parents often use to describe habits their child has picked up as a result of the monotony of life in a baby house or institution. It's basically a form of self-stimulation, or "stimming" as the autism community calls it; as far as I'm aware, the longer term is used to clarify that the child in question has not been diagnosed as autistic. I wanted to talk about both because in every example I have seen, they are different ways for people to express the same need.

Examples of these behaviors can include the harmless: flapping or rolling the hands, bouncing or rocking in place, humming, and so on. It can also include the more destructive, such as banging the head on things, scratching at oneself, biting or hitting (oneself or other people), and others.

Whoa, whoa, whoa, hold on a second. You're going to tell me it's okay to let my child hurt themselves and others? No, I'm not. These things are definitely a form of self-stimulation, but that doesn't make them healthy or okay. The first thing that's important when considering your child's behaviors, though, are whether or not they're truly harmful. I define harmful as "is causing physical damage to someone."

If that matches your child's behavior, I know you're thinking that your first priority is to eliminate said behavior. But what if you weren't trying to eliminate it, just redirect it?

It's the same approach we take when dealing with young children who are still trying to learn how to express their emotions appropriately. Instead of saying, "Don't do that," we need to give them something they can do that fulfills the same need. For example: "It's not okay for you to hit Matthew, but if you need to hit, it's okay to hit a pillow." The person in question is able to express how they feel in a non-destructive way.

Your child needs to chew on things? Maybe they would be soothed by a teething ring, regardless of age. If they need to hit and punch, you could try the pillow approach or invest in a punching bag. I know of parents who have had entire padded rooms built to keep their kids safe and happy, and while you don't have to go that far, there is definitely a compromise.

And no - it's not the end of the world if you can't eliminate the behavior. Your first focus should be on trying to redirect it, and if that doesn't work, you need to consult a therapist or other professional about how to eliminate it. Let me repeat that. You need to consult a therapist or other professional. You know your child best, but a trained professional knows the causes of their behavior better than you do.

But I'm willing to bet that if you've found this post through a Google search or some such, some or all of your child's self-stimulation isn't physically harmful. I don't say this to belittle you or your child's struggles, because I know it can be harmful in other ways. You don't want your child stared at or made fun of, and your child wants to have friends.

The difference is that now we are no longer concerned about your child's behavior. We are concerned about how others will react to it.

Can you teach your child how to react if somebody is impolite about what they're doing? Help them learn to stick up for themselves - and if they can't, that job falls either to you or to a sibling who wants to. I suggest you wait for the affected child or a sibling to bring it up so that you're not causing unnecessary worry. Don't try to lie or cover it up, but present in a way they can understand.

For example: "I think Cindy was looking at you strangely because she didn't know why you were flapping your hands. Maybe you could tell her you were just doing it because you were [excited, bored, nervous, etc]." If they aren't comfortable with that, you could tell them to redirect the friend's attention elsewhere: "The next time Pat stares at you, you could just ignore it and go back to talking about the show you both like."

Treat it like any other behavior. If your child is being bullied for these behaviors, it is your responsibility to equip them to handle the teasing or - if it is becoming too much for them to handle - take action yourself. This is not about your pride or how much you hate it when your child is stared at (it is much, much worse to be the person being stared at) or if you think the behaviors look funny.

This is about your child. That's why you're doing this, isn't it?

Friday, July 11, 2014

On reflection.

I've been quiet for a while, I know. I could make excuses as to why, but really, there's no excuse for being silent about things that truly matter. And orphan advocacy is something that truly matters to me.

But today I wanted to reflect.

I started this blog three and a half years ago, at the start of 2011. It was originally a result of two profiles on RR, each about a child that had captured my heart. There was always a need to expand, though, so I moved from just speaking about those two to sharing other orphans' stories, and here and there I've posted general things on disability, too. I plan to do more of that in the future, mixing the two together.

Today I found myself thinking about the original purpose of this blog, though. Those two children I tried to take under my wing from half a world away, and the third I soon added on.

I know I've posted these pictures dozens of times before. But I'm going to post them once more. These kids are all in a closed country.

"Timothy," born 1/09. He had a committed family but his birth parents decided to take him back home. Of course this is the happy ending we hope for for all these kids, but a bit of a bittersweet ending.

I can only hope he's OK. It sounds a bit detached, but there's not much else to say.

"Constance," born 10/06. We have a newer picture of her now, but I'm not going to post it, at least not yet. If you want to you can see it here. She too had a family, but their adoption didn't work out and she has been waiting in an institution for years now. And there is nothing we can do about it.

"Carmen," 9/08. There's another, newer picture of her here. Apart from that we have not gotten any updates on her in over a year. In many ways, a photo is enough and at the same time it is not.

So there's the first year of the blog, where it began, with one-third getting a happy ending and the others trapped thousands of miles away, where we cannot help.

The only option is to push forward.

Friday, February 7, 2014

Books for Explaining Disability to Children

One of the obstacles a family might face when bringing home a child with a disability is how to explain the disability to the children already at home. Whether they're young or a bit older, books are a great way to present the subject, but it can be difficult to find ones that present the condition in a positive light. This is, therefore, a hand-picked list of books for siblings who are expecting (or have) a brother or sister with a disability. It is not all-inclusive, but I have done my best to represent as many categories as possible.

The majority of these books are picture books, with a few chapter books mixed in. You don't have to assume that your child is too old for them just because they usually read more complicated text. Even young teenagers can benefit from picture books (I promise).

Some categories are difficult to fill due to the spectral nature of the disability. Ideally a child would be exposed to more than one of the books.

Intellectual Disabilities

  • All Dogs Have ADHD by Kathy Hoopmann. Uses pictures and traits of dogs to draw a parallel with traits of individuals who have ADHD.
  • Eukee the Jumpy Jumpy Elephant by Clifford L. Corman, M.D. A young elephant teaches kids what it's like to live with ADHD.
  • Joey Pigza Swallowed the Key by Jack Gantos. A middle-grade chapter book puts the reader in the shoes of a boy with largely uncontrolled ADHD. (There are other books in this series, but they focus on topics other than the disorder.)
Down Syndrome
Fetal Alcohol Syndrome
Physical Disabilities

  • Looking out for Sarah by Glenna Lang. Sarah and Perry, her guide dog, go through a typical day together.
  • Keep Your Ear on the Ball by Genevieve Patrillo. Davey wants to do everything himself, and he can - except play kickball, so his classmates find a way to help him.
  • The Secret Code by Dana Rau. A boy teaches his classmate how to read Braille.
Cerebral Palsy
Spina Bifida
I am not affiliated with any of the writers listed here and I make no profit off the books recommended.

Thursday, November 14, 2013

Every Child is Worth $10

It's hard to pick just one child to advocate for. Really hard. The reason we do it is because it's easier to raise one child above the crowd, to help one child, than it is to help all of them. But it's hard to leave the others behind.

Here's Andrue, my Christmas Warrior child. I shared a little about him here, but unfortunately we only have one tiny paragraph about him. I have confidence, though, that there is someone who will see their son in that paragraph and in this picture.

A few people have donated to Andrue already (to whom I give a big THANK YOU). He has $2413 in his grant right now, $81 of which is from Angel Tree donations. The Angel Tree is a really big fundraising event for Reece's Rainbow. If you donate $35 or more to one child's grant, you will be mailed an ornament with their picture on it. They are really cute this year - I will be posting pictures of mine soon.

Right now I have two goals. The first one is that I'd like to get Andrue to $2500 in total donations, which would get him on the page for children with sizeable grants. The second, because I can't leave anyone behind, is that I'd like to see every child on the Angel Tree get $10 in donations. How sad that we are two weeks in and some children have not yet been seen! Let's raise them above the crowd, too!

Each child needs a bit more than $10 to get to the goal, as ten percent of each donation goes to the operational cost fund. Remember, though, that all donations are tax deductible! Let's get these kids to ten dollars, just to start off.

Yulia, Andrew, Dante L3, Holly, Kiril, Rhylan, Lavender, Nina, Callie, Lauren, Henry, Harlan, GlennMichael SN.26, Christian L11, Saige, Fernando, Andruis (L), Tori, Titas, Leon, Leah, Wendy, George #19-2, Vaughn, Delmar, Teagan, Madden #61-1, Luke Anthony, Lincoln, Jacob, Jeff, Margeaux L18, Thomas L19, Tobin, Brady L9, Jasmina, Corban, Heinrich, Emmaline, Frankie, and Lanaya.

It is my hope that by the start of next week we will have zeroed those zeros, and raised everyone to $10.

Thursday, October 31, 2013

He Isn't Suffering (Neurotypical Privilege)

This photo, a screencap from a news article on Jennifer Lawrence, is currently circulating Tumblr with over 250,000 notes. Take a moment, see if you can figure out why I'm so disgusted.

The article goes on to quote Lawrence's mom as saying, "There aren't many people who are movie stars who'd spend time with a special needs kid."

It's a privilege to be neurotypical (not intellectually disabled). Not because it's bad to be intellectually disabled, but because of things like this.

Neurotypical privilege means you aren't perceived as suffering because of something that is a part of you.

Neurotypical privilege means you have friends, and it's not a big deal. Do you really want people making a big deal about the fact that you have friends? No. You just want to be like everyone else.

Neurotypical privilege is something so many people are envious of. It shows our flaws as part of society, even when we don't think we're doing anything wrong. We want to ignore it because we don't want to think we're doing anything wrong.

But we are.

And that's why I am disgusted.