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

ADD/ADHD
  • 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.)
Autism
Down Syndrome
Fetal Alcohol Syndrome
Physical Disabilities

Blindness
  • 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
Deafness
Epilepsy
HIV or AIDS
Hydrocephalus
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.

Tuesday, September 17, 2013

2013 Christmas Warriors (Chosen)

Last December, we were in west Europe visiting family for Christmas. We were sitting on a train waiting to leave for the city (they're big on public transport there) and my mother mentioned to me that she'd heard something bad about the pending adoption ban in R*ssia. As soon as I was able, I looked it up and felt my heart sinking.

I stopped blogging as frequently after that. The large majority of the children I advocated for in the first two years of this blog were in that country, most of them a region known to RR as 2H. It's still really hard to know that those doors may not be reopening for a long while and that while they wait, a large number of those children will die. I don't like to think about that. Knowing that there is nothing we can do right now is difficult. Advocacy in general is difficult. It's hard to pick one child or even a handful of children to yell for when there are so many others out there who need a voice, too. So I stopped blogging for a while, only posting every now and then.

The thing is, though, that now the Angel Tree is coming up again. (If you're new: it's an annual fundraiser RR does every holiday season where people sign up as warriors and try to raise $1000 for a specific child's grant.) For the past two years I've been a warrior for this little gal:


Her alias is Carmen, and she is in the closed country. Because of this she is no longer eligible to receive donations. I desperately wish there were some way to help her. If you believe in prayer, please send some her way.

Now, two days ago signups for the Angel Tree opened up again. I tried to go through and pick a child from those available, but still so many kids needed warriors and all the little ones on my heart already had people committed to fundraising for them. So I left the box blank, asking to be assigned to a child in need.

Here's my little guy. This is Andrue #16-4. He turned (or will turn - we only have a birth year) nine this year.


This is what his profile says:

Andrue was raised by his birth family until he was 9 months old. At that time, he was hospitalized for genetic testing and when the diagnosis of Down syndrome was confirmed, he was left at the hospital. He was then transferred to an orphanage and later on, to an institution for children with mental disabilities, which is his current home. He walks, climbs and catches a ball. He likes to play with stuffed animals and has one favorite stuffed animal that he carries around with him. He reacts to his name and follows simple directions. He pronounces some syllables and attempts to communicate, but his speech is not yet developed. He smiles when spoken to and enjoys cuddling with familiar adults.

I hope to be blogging more frequently and sharing more about him with you soon, especially as we move toward November 1, when fundraising will begin.

Wednesday, July 24, 2013

Home, and Waiting in a Scary Place

Today we found out that this little guy is going home.


No, not to his adoptive family, as the doors are still closed there. His birth family has stepped forward and decided to take him home.

So, so grateful that he will be going home, even if this is not how we pictured it happening. But in a way this is even better. Had adoptions not been shut down over there, he would most likely be home in America and his birth family would no longer have the option of taking him back to the place where he should have been all along. At the same time, I am saddened that he had to spend four and a half years waiting for this.

Over three hundred kids are waiting for families in America who may not be able to get to them. Countless more do not have a chance to find that family now.

The place they are in is a very scary country to be right now. Not just because of the adoption ban. Awful things are happening in R country, and so many people are ignorant of the situation because sources are trying hard to keep it out of the media.

Homosexuality has been criminalized in that country. Directly from the linked source:

Finally, it is rumored that Mr. Putin is about to sign an edict that would remove children from their own families if the parents are either gay or lesbian or suspected of being gay or lesbian. The police would have the authority to remove children from adoptive homes as well as from their own biological parents.

I know I have readers who don't "agree" with being gay (as if it is really something you can agree or disagree with). This is not the time to get into that debate.

In America we are arguing about same-sex marriage.

In R country they are arguing about two laws. One prevents children from getting home. The other would forcibly remove them from the homes they are already in.

So whether or not you want to fight for the couples, it is time to fight for the children on both counts.

The more they try to silence us, the louder we have to scream.

Sunday, July 7, 2013

Guide to Avoiding Ableism, Part I: Language

I get the feeling that a lot of people are going to skip this post, thinking it's more about "spread the word to end the word." It's a great movement and all, but there's a lot more to not being ableist than not using the r-word. Lots of people use ableist language and don't know it.

I am by no means an expert of any sort, but I have compiled this information through research, personal experience, and speaking with others who have experienced it.


"You're not stupid, and you're not messed up," Mom said. "Don't think that."



"Everyone else does," I said, not looking at her face. "Or they call me Retard. So really, messed up is nicer than Retard, or Brain-damaged, or Zippy the Pinhead."

-Jack Gantos, Joey Pigza Swallowed the Key

Before getting into slurs, there's a point that a lot of people argue...

Person-First Language

This basically means that instead of saying "a disabled person," you say "a person with a disability." Contrary to popular belief, not all disabled people like this!

This is really something that comes down to personal preference. Often it's really not even necessary to use it at all - just call a person a person. For example, "Today I met Caroline's youngest sister, you know, the one who has cerebral palsy." By cutting out everything after "sister," you still get your point across. You met Caroline's sister, and she is a person. She doesn't constantly have to have her diagnosis trailing after her.

Sometimes you do have to specify that the person has a disability, or that multiple people do. In the case of multiple people, it's usually okay to use the terms interchangeably. "I'm a teacher at a school for blind students" vs. "I'm a teacher at a school for students who are blind" will both work fine.

A single person should be asked their preference. Some people really do prefer to be referred to as "a Down syndrome person" rather than "a person with Down syndrome." (This usually happens with intellectual disabilities and some people will actually be offended if you refer to them as "a person with Down syndrome," as it suggests you can separate the person and the Down syndrome. I'll explain this more in part two.)

People should generally NOT be referred to as "that autistic kid" or "an ADHD."

This brings us to the second half of how to avoid ableism in language, and the one most commonly talked about...

Slurs

The word here that is generally brought up is the r-word (retard or retarded). It's a word that until just recently was used as a medical term, but it means something else now.

Now it means, "You're disabled, and that's why I hate you. I hate you because you are disabled." It means this no matter how you use it. Even if you are not referring to a disabled person. Even if there is not a disabled person around. Even if you are using it to refer to an inanimate object, that is what the word means.

After this is where it gets a little rocky. There are dozens of terms that some people consider ableist and others are fine with. This is the most comprehensive list I've been able to find so far, yet many of the words have been integrated with the English language for so long that few people will consider them ableist. (Some actually prefer terms like "differently abled.")

It is impossible to list every word that might be deemed offensive, but these are generally the worst offenders of the list:
  • "confined/bound to bed/a wheelchair"
  • "suffering from" a disability
  • "spaz" or "crip"
  • "madhouse," "crazy home," or "loony bin"
  • "invalid"
  • "Mongoloid"
  • "retard"
One last thing...please, if you have children in school, share this with them. School is often a place where slurs are thrown around simply because people don't know better. Teaching your children to speak up reminds them that just because someone is different doesn't mean they should be made fun of, and it helps them to learn from an early age that just because people use a word one way doesn't mean that it's the word's intended use.

Part II will be posted soon.

Friday, June 21, 2013

Winding Road (Nehemiah)

There are certain categories of children who are more difficult to find families for. Some of these are boys, older children, those with multiple diagnoses, and those in the more expensive countries. There are some children whose profiles will make your heart sink.

You've been waiting too long. And you're probably going to have to wait much, much longer. I'm sorry.



His main diagnosis is cerebral palsy (the website also lists "difficult mental handicap," but this is most likely due to institutionalization). He has been waiting to be seen for over thirteen years.

It was the amazing Jane who got him listed, and she wrote this for his profile: "When I met him I was heartbroken! More than any child in the institution the sight of this thin boy with his hands tied and blood on his sleeves made me weep! [...] The staff told me he was tied for his protection, as he hurts himself; the holes on his sleeves obviously point to this..."

No, I can't condone tying a child up. But the worst part of this may be that the staff truly believes that is all they can do for him. And it probably is.

Maybe he has good staff who really want to help him. I don't know. But no matter how good they are, I guarantee you they are overworked. They can't give Nehemiah the love and attention he needs. Only a family could do that.

This is from an adoptive family who met him just this month: "He is in a groupa with 7 other boys. In the playroom he sat on the mat with a stuffed lion. He didn't really interact with me at all. Occasionally he would begin to cry loudly. Luckily, the caregivers responded to him quickly. He has sores all over his hands and wounds on his face. He's a very attractive little guy, though."

Nehemiah needs a family with no expectations. None. The only way to overcome self-harming behaviors that surface in institutional autism is time. He needs family who is willing to meet him exactly where he is and be ready to slowly undo the damage that has been done over the years.

I'm not going to sugarcoat any of this - it wouldn't be fair to him. Taking care of Nehemiah is going to be a long, winding road that goes forward sometimes and backward other times. He needs a family who is completely, one hundred percent OKAY with that.

It's going to take some time to find them. I would like to ask that you take the time to share his information today. He's going to be a HARD child to find a family for. And you know what? That's okay. He is who he is. But it means we're going to have to work harder for him.

He is newly listed, so there isn't much in his grant - only about $9 so far. It would be a huge blessing if that could be multiplied. But the main thing is advocacy. If only one more person sees him today because I wrote this post, that will be enough.

But if you are that one person, could you please pass this face on?


If you are interested in adopting Nehemiah, you must have a completed, approved home study before committing to him. Only married couples can adopt from this region, but larger families and older parents are welcome. He may be adopted alone or with any of these children. The ten-day wait after court is often waived in this region.