This may be the shortest post I’ve ever written. I just want all of you, my good and faithful readers, to watch this video.
There may be hope for the human race after all.
Category Archives: Special Needs
The Other Brother
There are volumes written about special needs kids. We talk about them on the news, on television shows, and on blogs. There are speculations about what causes Autism, and stories about the lives of families who live with various challenges.
There is another population, though, that we don’t hear much about. In my mind, I’ve always thought of them (us) as “the others.”
These are the kids who don’t have special needs. They are “typical,” or “normal,” or whatever word is the PC norm these days. They are the brothers and sisters of the special needs kids that we hear about on the news.
They are part of the background.
I think I have an unusual perspective. I am both a sibling and a parent of a special needs individual. I know the demands–emotionally, physically, and time-wise–of parenting a special needs child. I also know what it’s like to be the “normal” part of the special needs equation.
It’s tough.
Now I have a son who is in the same position I was as a child, so I know. I know a lot of how he feels, and how hard it can be.
Even though you know your parents love you, and you know they provide for all of your needs, it is hard sometimes to deal with the fact that your sister needs so much more. It isn’t anyone’s fault, or choice, but the situation remains the same. Looking back as an adult, especially since I have a special needs daughter now, it is very clear. But I remember what it was like as a kid. I remember how it seemed like I wasn’t as important as my sister, how everyone was fighting for her educational needs, and how I felt like everyone just assumed I was okay.
Here’s the kicker: I was okay. I just didn’t think so at the time.
Like I said, now I can see that I was wrong to feel that way. The simple fact is, my sister’s needs were greater. She couldn’t fight for herself, so someone else had to. If I hadn’t been such a selfish shit, I could have fought for her, too.
My son is so much better than me. Already he is very defensive of his sister. Don’t get me wrong–they have their moments, just like my sister and I still have our moments. I’ve written before about how our relationship was a very typical sister relationship. My kids are the same–she’s in his room, he changes her TV channel, she’s touching his stuff, she hits him on the head with a spoon–you get it. But I digress. My point was that he is very understanding of his sister, and he watches out for her. He told me a while back that she was going to live with him when he got older, so I could have a break.
Yeah, I know.
I have tried very, VERY hard over the years to make sure my son always knew that he was just as important as his sister. I have fought tooth and nail for his education. We load up just like the Beverly Hillbillies and head off to soccer games. We camp, and go to the beach, and the zoo, and anywhere else we want to go. Sure, it would be easier to stay home. It’s very tempting, especially as the years go by and I’m getting a little older and a little slower. But it isn’t just my son who gets to experience all of these wonderful things–it’s all of us. And so it’s worth it. It’s important for ALL of us to do things besides run to the doctor or the therapist.
This is all of us, with the exception of my husband taking the picture, walking back from a sort-of local nature center. That’s my daughter riding on my sister’s lap, and my son riding on the back of her wheelchair. I’m driving. My sister’s sight line was impaired by the large child in her face.
Even though it can be challenging to be one of these “other” siblings, there are benefits, too.
We others have little or no difficulty accepting people with various levels of challenges. It’s no big deal to us. We can talk to people with special needs without discomfort or doubt. We like to look at various wheelchairs people are riding and chat with them about speed and handling. We can see beyond what is on the surface, and realize the beautiful people who lie within. These other, (not so) normal siblings are more kind-hearted, and courageous, and understanding. They despise bullies, and most aren’t afraid to stand up to them.
My son is all of these things and more. He has the capacity for amazing kindness, and a tolerance that outshines most adults I now. He has cornered the market on compassion. I would have a much more difficult time making it through my day if it wasn’t for my son. We would all do well to learn from these other siblings, the ones who stand in the background.
Do these others have special needs? No. But can we call them normal? Ordinary?
No way.
Welcome to the Short Bus: No Jerks Allowed
I’ve been thinking a lot lately about people, and how they think, and what they think about others.
I’ve also been thinking about the short bus.
Over the past couple of weeks, I’ve been reminded that being told you “ride the short bus” is an insult. It means you are stupid or crazy. But my daughter rides the short bus, and my sister always rode the short bus, and neither one of them is stupid or crazy.
So I started thinking, as I was standing outside and waiting on the aforementioned short bus with my daughter, that riding that diminutive mode of transportation is awesome. Way more awesome than, say, riding a regular bus. As proof, I have compiled a highly scientific and accurate list of reasons why the short bus is the coolest bus in the fleet.
- The short bus has adult supervision. My elementary age daughter is being watched over by qualified adults, not high school kids with piercings and dirty mouths.
- My daughter wears an actual seat belt. If the regular bus has an accident, your kid is going to be bouncing around like a pea in a can. Sorry!
- In general, the short bus drivers are kinder, more patient, and far more accommodating than regular bus drivers. Sorry again!
- Sure, the kids on the short bus have problems, but I’ve met the regular ed kids on the regular bus. I think you’d better be more worried than me!
- Yeah, some of them might lick the windows. At least they aren’t making out with each other and “experimenting!”
- Lots of them still color with crayons. But they aren’t smoking cigarettes. Or drinking. Good luck!
- Most of the kids are dressed pretty conservatively, but I’d take that over the “gangsta” look, male skinny jeans, or the little girls who look like they got their clothing out of the discount bin at Hal’s House of Hookers.
- The kids on the short bus have lots of issues, but my daughter will never tell me she hates me, hit me, roll her eyes at me, or call me a bitch.
- Also, I don’t ever have to worry about my daughter coming home with a guy who looks like he just escaped from work release, telling me they are in LOVE and they are going to have a BABY!
- Likewise, I don’t have to worry about her becoming the most “popular” girl in school, if you get my meaning.
- I ALSO don’t have to worry about naked pictures of my daughter popping up on the Internet because of “sexting.”
- My daughter and her peers on the short bus don’t judge people. They don’t make fun of others because they are different, or use them as the butt of a joke. They aren’t racists, bigots, or just general assholes. They aren’t bullies. In short (get it?), they aren’t jerks.
See, riding the short bus isn’t so bad. It doesn’t make you stupid, or crazy. You won’t catch a disease from riding it. In fact, I’d take the short bus any day. I’d climb on, and sit in the back, and as we passed the regular bus, I’d hold up a sign:
SEE YOU LATER, LOSERS!
Mainstream Consequences
Have a look at this recent story on Nightline. Even if you’ve already seen it, watch it again. Please.
Since you hopefully just watched that, I won’t waste our time by going over all of it. But I will recap. Concerns are arising over some of the disciplinary measures being taken in public schools when dealing with kids who have various behavioral problems, usually kids on the Autism Spectrum. The word “barbaric” gets used a few times, as you might have noticed.
As I was watching this, I was shocked. And since I try to always be as honest with you as possible, I’ll tell you something else: nothing good could come from a teacher, or anyone else, using those methods on my daughter. If someone shocked her as a punishment, I would have no choice but to do the whole Terminator thing and drive my f****** van right through the front of the school. That’s all. Ditto on tying her to a table.
I try very, very hard to be an open minded person. I know how difficult it can be to deal with behavior problems. I know how impossible it can be to control these kids. Some of them are big kids. They try to hurt others, and they try to hurt themselves. Even Evelyn, limited though she is, can really kick up hell when she wants to. I know sometimes the only way to deal with her is just to not deal with her, if you follow. She has to just sort of let it out, and I know the more I try to intervene, the worse it makes her. You know how, when you are trying not to cry, and someone pats you or talks to you in a soothing voice, it makes you cry even more? Same thing.
Anyway, as I said, I am trying to understand the thinking behind these extreme measures, and I always treat everything reported by the media with great suspicion. I know a story can be twisted in many ways, and I know that we don’t know the back stories to these situations.
But they shocked that kid. They shocked him.
I’ll tell you another one that got me: when the man was holding the little boy, and the boy’s mother was trying to get the man to let the boy go. Ha, ha. The man would have let my child go. Oh yes. Don’t get me wrong–I’m not one of those people who think I can whip everyone’s ass. Far from it. I’m getting older and squishy and I’m getting arthritis in my fingers. If I punched someone it would probably hurt me more than them. But make no mistake–I’m not pushover, either. I would get my child out of the arms of anyone restraining her against our will, or die in the attempt.
So, what is my point? Good question. After my initial emotional response passes, I don’t think those people using those methods are intending to be barbarians. It seems to me like they are uneducated and inexperienced. They lack the knowledge, patience, and understanding required to deal with these kids. Did you see the other school? The Centennial School? The one with all the kids with behavior problems? Did you see how good the teachers were at dealing with the kids, and how caring and informed the administrator was? If you missed it, watch the video again. Pay attention.
Has anyone caught up with me yet?
Want to know how we go to this situation? Want to know how things got this far out of control?
Mainstreaming.
They even mentioned it in the video, though they never addressed it directly. But it’s there. I’ve talked about this before, but I think it bears repeating. Let me make it as clear as I can: this is the kind of shit that happens when you put special needs kids in a “regular” education environment! Regular ed teachers cannot provide the attention needed for a special ed kid and the other fifty kids they have to teach to take tests. It’s not possible, and I don’t care how fabulous the teacher is.
You know what it is? It’s babysitting. That’s all it is. Glorified, really expensive baby sitting. A bunch of politically correct bullshit that makes everyone feel “good” that these kids aren’t being segregated or made to feel different.
Here’s a frickin’ news flash, which I have flashed previously: they ARE different! All of the wishing in the world won’t change it. I can put Evelyn in the regular ed classroom until the end of time, and she still won’t be a regular ed student. What could she possibly get out of a regular ed classroom?
From what I can tell, about 60 volts. Or maybe tied to a table.
I find it amazing that my own state of West Virginia is among the seventeen that have laws in place to protect children from this type of extreme discipline. Maybe there is hope for us after all. Otherwise, there are no federal guidelines. I guess it’s a sort of “anything goes” type situation.
But the bottom line is this: it will only get worse. The increase in behavioral disorders is astronomical. Where do we go? What do we do? I don’t know the answers to those questions, and I don’t pretend to, but I do know one thing. The answers will not be found inside a mainstream classroom.
And remember, if you hear a news story about some parent parking her van in the principle’s office, send me a prayer.
(not so) Sorry
Apologies are funny things.
Remember this guy? This was Jimmy Swaggart’s tearful apology for his prostitute habit. He was so sad. He was so sorry.
Right.
As a result of the mild backlash from her insensitive remarks, Margaret Cho has written a heart-felt apology on her blog. I encourage you to hop on over there and read it, and be sure to read the comments. They make excellent food for thought.
I don’t really care all that much about the apology itself. I mean, I don’t know Cho, she doesn’t know me, and she doesn’t owe me any apology. She can be a jerk if she wants, and I can slam her for it if I want. (Freedom of speech, baby!) The thing that rubs me wrong is how typical this “heart-felt” apology is. Some celebrity is guilty of a fantastic boob, then they issue a sappy, crappy, “oh-I-didn’t-mean-to-hurt-anyone” apology.
Whatever.
I always wonder about apologies. I sometimes ask my son, when he gets in trouble, if he is really sorry for what he did, or if he’s just sorry he got caught. The phrase that comes to mind is “damage control.”
A lot of the comments on Cho’s blog suggest that people are just looking to be offended, and that it isn’t that big of a deal. I guess, from a certain perspective, that right. Ultimately, what a minor celebrity says during a cable television interview isn’t all that important, compared to, say, the President, the Pope, or Stephen King. People say jerky things all the time. The world is consumed by jerkiness. Bygones.
But here’s the thing–Cho promotes herself as a great human rights activist, standing up for minorities of all kinds. More than that, while it may not make any difference about what a person says, it certainly reveals their character, doesn’t it?
Take those comments–a lot of the commentators remarked that it was an “accident,” or that Cho “slipped up.” “Humans make errors.” Hey, you don’t have to tell me that. I’ve made enough mistakes in my time to fill this blog and ten more. You know what though? I have never called anyone a retard. Ever. I’m sure I’ve hurt people along the way, but there are no excuses, and no apologies. Those people can hate me, and rightly so.
And while I’m at it, that whole “accident” and “slip-up” thing really got me thinking. An accident is when you step on someone’s toe, then say, “Oh, I’m sorry!” Or maybe when you back your car into a parking meter. (Just an example.) Those are accidents. You might even “accidentally” hurt someone’s feelings by something you say. I personally am very familiar with the taste of my foot.
However, when you set out to do or say something that you know is going to be hurtful and hateful, well, that’s not an accident. That’s not a slip-up. Cho was giving a little comedy routine right there on live television. She’s promoting her new comedy tour, and she was giving everyone a preview. Part of her repertoire is being crude and pushing the envelope. That’s who she is. No sense in apologizing for it now, I guess.
Don’t get me wrong–I do believe in apologizing when you hurt someone. Here’s the catch–being sorry for something doesn’t fix it. Apologies aren’t a license to do or say anything you want. Everyone would do well to remember that they while they absolutely do have the freedom to say what they want, others also have the freedom to react. People who were Margaret Cho fans before probably still are. I would go so far as to say that a lot of people she offended had never even heard of her until now.
(Can you say, “publicity?”)
One last thing–it is possible to be funny and racy and edgy without tearing others down. You can even poke fun at others without hurting them. There is a line there, and when you cross it, don’t be surprised by the consequences, and screw your apologies.
Oh, and make sure you have a good publicist.
Proud Parent of a “Retard”
Usually, I’m one of those people who are sitting at home, shaking their heads ruefully, when I hear about how everyone is mad because some pea-brained celebrity made some inappropriate comment during an interview.
You know what I’m talking about–someone uses a racial slur, or slams homosexuality, and the media feeding frenzy begins. It’s played over and over and over and over and over on every network in the universe. Aliens on the planet Zoobork hear about it. Sometimes, it blows over, and sometimes a career can be shaken. (Remember Imus?)
I always sit around and say how the media makes it worse, let it drop, etc, etc.
Well, I’m a hypocrite, in case any of my regular readers haven’t figured it out, and I’m about to prove it to the tenth degree.
Recently, Margaret Cho, a comedienne, did an interview in which she declared she didn’t “necessarily want to have a retard” baby. She’s older, and I assume she’s talking about the increased risk for birth defects as a woman moves along in her childbearing years.
This comment is possibly one of the stupidest things I have ever heard anyone say, and that, my friends, is saying a lot. I refuse to believe anyone could be this ignorant. She said it with intent–period. Was it for the publicity, or is this really the depth of her mind? Obviously, having a retarded baby is the least of her problems.
I hate that word–retard. I hate it. Hate, hate, hate. Is has a real definition, and until very recently was commonly used in medical circles. But that doesn’t matter–I hate it. People use it, and they sure as hell aren’t using it medically. They use it to imply someone is stupid or ridiculous.
In other words, they think my daughter is stupid and ridiculous.
In other words, Margaret Cho thinks my daughter is stupid and ridiculous.
I wonder if this little slur from this big idiot will get as much negative attention as, say, Imus’ referring to some black women’s basketball players as “nappy-headed ho’s?” I sort of doubt it. I guess the only ripples will be from people like me who have very personal feelings about these retarded babies, kids and adults.
I mean, purely hypothetically, if someone were to write something about Margaret Cho, and they were to use a racial slur, like Slant-eye or Buckethead, why, that would be very offensive, wouldn’t it? Lot’s of people would be offended, and maybe whoever said those things would be dragged over the coals. So of course, you would never want to use those types of racial slurs. If you did, it would all just be in good fun, just a little joke, just pushing the boundaries to prove your edginess, right? No harm done–no need to get upset, right?
In reality, I know I’m supposed to take the high road here, and that comments from such a small mind should just roll right off my back. Oh, but it’s hard. When I sit here and look at my daughter, and I think of how much I love her and how beautiful she is, I just want to snatch that bitch Margaret Cho bald.
Maybe there are lots of people who feel like her. I understand that everyone wants to have a healthy baby, and no one would wish to have a child with any type of problem. But if there’s one thing I’ve learned in this life, it’s that there are no guarantees, and let me go one step more–I would not trade my retarded daughter for ten “normal” kids. Here’s why:
- She lives every day in the moment–no worries about yesterday or tomorrow.
- She gets mad, but she gets over it. No grudge holding for her.
- She loves who she loves, unconditionally. She has no prejudice, no bias, no preconceived notions about anyone. (If only Margaret Cho could be so fortunate.)
- She gives affection freely.
- She has taught me what a gift life is, how important it is to be thankful for each thing we are given, no matter how small.
- When she’s excited, she jumps and laughs and squeals. She lives her joy with childlike abandon. We’re all too hung-up with ourselves to ever really give ourselves over to happiness and joy. We’re the ones missing out.
- It’s hard sometimes, but it’s my privilege to take care of her. She depends totally on me–what an awesome responsibility!
- She is satisfied with so little. It takes almost nothing to make her happy, where as all of us are never satisfied.
If all of these things come with being retarded, maybe we should all be so fortunate as to be counted among that number. There are obviously worse things to be.
A narrow-minded idiot, for example.
P.S. In case you missed the message: Suck it, Margaret Cho. You don’t deserve a “retarded” child.
This is Evelyn when she was three. Who knew being retarded was so frickin’ cute?
Saint in a Wheelchair
Sometimes I think our lives consist of one misconception after another. This is mostly true with things people don’t have personal experience with. For example, I have the misconception that all politicians are crooked liars who would knock their own mothers off a chair if they thought she was sitting on a dollar. Of course, this misconception happens to be true, but still.
Nowhere is the misconception problem more prevalent than in the world of special needs. I am always fascinated by how people view individuals with special needs. As both a mother and a sister to people with severe disabilities, I feel I can speak with a reasonable amount of knowledge on this subject. (Disclaimer: I have no doubt that there will be someone who will tell me that every single point I am getting ready to make is wrong, and that their experience is the exact opposite of what I am saying, and that the person they care for is an angel. Allow me to say, in advance, good for you. Get your own blog.)
Usually I talk about my daughter, but this post is about someone else: my sister Mindy.
That’s her, several years ago. She has spastic Cerebral Palsy. She was born extremely premature–today they are called “super-preemies,” but when she was born there was no such term. She had a twin sister who lived for almost eight months in the hospital.
Everywhere we go, I run into someone who knows Mindy (and a thousand curses to all of those who ask if I am her mother.) She also attends church, and has for most of her life, so that adds another demographic to the “people who know Mindy” population. Everyone person who knows her loves her, and they think she is God’s angel right here on Earth, a blessing and an example of how to live a humble, accepting life. They pet her and use words like “poor little thing.” Worse, they talk about how wonderful I am for taking care of her, how patient I am, and someone even told me there would be a jewel in my crown.
Crown? I think I must have misplaced it. Probably it fell off when I was banging my head against the wall.
Mindy can be a truly remarkable person. For most of her life, she was a very calm, mild-mannered, unassuming person who smiled most of the time. But things have changed as the years have gone by. She’s having trouble with depression. She takes medication for mood stabilization and to help her sleep. She has poor impulse control and some OCD stuff.
In other words, she’s just a human being.
To assume that she has super abilities to be patient and accepting is to dehumanize her. No one can be perfectly patient and perfectly accepting all the time. Add into it that she has more reason than most people I know to be depressed or angry, and you see the problem.
Mindy’s body is her enemy. Her mind is actually quite good. I won’t say that she has the same cognitive ability as a so-called normal person, but certainly she has more than, say, members of Congress. Anyway, her mind is pretty much okay, but her body is her prison. It won’t move like she wants it to. She can’t do anything for herself. Anything that requires muscles (including eyes) is compromised. But I’m not telling you this to get you to feel sorry for her. There are some things I think everyone should consider, not just about Mindy, but about any special needs person you may know.
- Mindy wanted all the same things we all did–a job, marriage, kids–just an independent life. She is 32 years old now, and she has to cope with the fact that she can’t have those things.
- It’s not her job to be a blessing or set an example for you. If she does, fine, but if she doesn’t, that’s fine too.
- She is just like everyone else. She has mood swings and tantrums. She has good days and not-so-good days. Again, I think that just means she’s human.
- The relationship I have with Mindy is a lot less special than you probably think it is. We are sisters. If you have a sister, I doubt if you need any explanation. We argue about something every single day. She calls me some not-so-nice names very frequently. I, having only slightly more self-control, don’t call her names, although they certainly cross my mind. Once, when we were teenagers, we were arguing over a television program. She turned in her power wheelchair and charged me. She rammed my rocking chair with the force of a rampaging bull. Shouting and tears followed.
- She doesn’t like it when people talk to her like she is two years old, which is often. They pet her head and get right in her face to talk. Would you like it if I did that to you? It would be ridiculous if I did to you, wouldn’t it? You’d think I had lost my mind. Yet it’s okay for someone to talk to my sister that way. Remember, she is 32-year-old woman.
- She understands everything you are saying. It might take her a long time to respond because it’s hard for her to get her mouth working the right way. People will ask her a question and then keep going without waiting for the answer. They assume she can’t talk. In short, they overlook her. She’s almost an inanimate object to them.
- Lay off her wheelchair. That chair is a part of her body. She is in it all day, every day. When you touch it or lean on it, it’s the same as if you were touching her person. It’s a part of her personal space. Yes, I lean on it and hang my purse from it, but I’m allowed. (Maybe that’s why she calls me the bad names. Hmmm…..)
- Just because she is sitting down doesn’t mean she is less than you. She’s in this world the same as the rest of us. She deserves the same rights and considerations as all of you ambulatory folks.
I think what it boils down to is respect. Respect her, and others, as people. They are not saints, or angels. Some of them might be super-sweet people who never have a bad word to say, but some of them might be short-tempered and irritable (like me.) In short, they are varied, because they are people, and no two people are just alike. They want what you want–to be treated with respect and understanding.
And to watch their program on TV. If not, they might just knock you out of your chair.
Head on over to Yeah Write and check out all the fantastic reads!
Included
I was talking to a friend of mine this morning who is a teacher, and the conversation turned to the topic of “inclusion.”
Now, for those of you who have not been baptized into the world of special education, allow me to submerge you. Inclusion is when you take special education children and put them in regular education classrooms. That, of course, is a an extreme oversimplification, but hopefully you get the idea.
My sister, who turned 32 back in September, started off her public school education in a so-called “special” school. It was a school made just for special needs kids. Let me say something very clearly—I am not talking about kids who need extra help in math or reading and go out for a couple of classes a day for special education. To me, that’s a whole other issue, although I could give you a good argument about why inclusion for those kids is misguided, too. For now, the kids I’m talking about are kids like my sister, and like my daughter.
Where was I? Right–Mindy. She went to a special school. This school was full of kids with varying levels of disability, but all of them were considered pretty severe. Lots of kids in wheelchairs, kids who couldn’t talk, kids who were very challenged. In this school, there were whole classrooms stuffed with physical therapy equipment. There were therapists on staff all day who stayed at that school. All day. The teachers were qualified special education teachers. The aides were special ed aides. They knew first aid. They knew how to deal with seizures, and how to administer Diastat. Don’t know what that is? Tough. I’m not telling. They worked on skills which hopefully made the kids more functional, and as independent as possible. For all of our efforts at home, it was an aid at this special school who finally potty trained my sister. She fit in there. She wasn’t an object of pity–she was a member of a group. Those were her peers.
Then one day some bleeding heart politically correct politician decided that these kids were segregated. It was wrong to keep them separated from the regular ed kids. So they mainstreamed them. They put them in regular school.
Okay. We can deal with that. Right?
Wrong.
Things started to slip through the cracks. The funding of special ed programs became much more ambiguous because they were now all mixed in with everything else. Consider the following: the board of education in our county requests permission to bill WV Medicaid for services provided to my special ed daughter. In due course they receive reimbursement from WV Medicaid, and they then put that money back into special education.
Hahahahahahahaha! Whew! That was funny, wasn’t it? Of course they don’t put the money back into special education. They put it into the general fund, where it can then be spent on football uniforms for the local high schools. (Or whatever.) I called the state department of education to see if this was legal, and after one thousand transfers and a bunch of hem hawing, I finally received the most unsurprising answer in the history of the universe: there is no policy dictating what the school boards do with the money they receive back from Medicaid. So I withdrew my permission for the board to bill my daughters card, and I review all of her charges each year to make sure they don’t. Because there is a policy which requires my written permission for them to bill Medicaid. I happily deny that permission each year.
I’m getting off topic a little here (as usual). My point was inclusion. I don’t understand it. Who are we trying to make feel better? Kids like my daughter get absolutely nothing from a regular ed classroom. A regular ed teacher is not qualified to teach her. Instead of learning to be functional, suddenly now it’s important for her to know the days of the week.
Don’t get me wrong. Knowing the days of the week comes in handy, especially on Friday. But she’s not there yet. She may never be there. And I need her to have a teacher who understands that. What I don’t need for her is a babysitter.
Because that’s what it boils down to. That’s what happens to severely challenged kids in the regular ed environment. They are just there. People say it helps the other kids be more accepting. Great. Guess what? It’s not my daughter’s responsibility to teach other kids to be accepting. That’s their parent’s job. Everyone always loved my sister, and she got a standing ovation on her graduation day, but so what? Everyone liked her, sure, but she was still left out of everything. Why? Because she had no peers there. There was one other kid with her, and thank goodness he was there, or she would have been completely alone. We all need to feel like we belong, like there are others who are like us and understand a little what it’s like to be us. Why should we take that away from special ed kids just to make everyone else feel good about themselves?
As far as parents who support inclusion, I don’t know what to think about them. My best opinion is that they think maybe their special ed kid will be able to learn more in that environment. My worst opinion is that they are trying to convince themselves that their kid is like everyone else. Here’s the bad news: your kid is NOT like everyone else. They don’t fit in. Those regular ed kids are NOT their peers, and that will never change, even if they sit in that regular ed classroom forever.
My daughter is special, and she requires special education–all day, every day. She has to have her diaper changed. Is the regular teacher going to take a break from her teaching to do that? The county doesn’t like having a designated aid for a special ed student, so what other option is there?
Let her go to music class or gym with everyone else if it makes everyone happy, but she has no business in a regular ed classroom. Period. I’m her mother. I’m not worried about being politically correct–I’m worried about what’s best for her.
***Note: my daughter happens to be in a very good educational situation right now. However, I’m not going to go into it. I have my reasons. Trust me. I’m just using her as an example. That’s the price of being my kid, I guess.
Mourning in Never-land
Recently, the mother of a special needs child wrote a post that went viral on the Internet. This post wasn’t triggered by the blog, but rather a follow-up comment by the author. She remarked that someone had told her she should mourn her daughter and get over it (that’s my paraphrase.)
Now, her daughter didn’t die–she was born with special needs, so to some, the word “mourn” may seem like an odd one. But when you have a child with special needs, you do mourn.
You do.
To some it may seem like self-pity. I don’t know–maybe it is. Some people might be tempted to judge me for saying what I’m going to say, but I’m only telling the truth. When, as a woman (because it’s much more difficult for a man,) you decide to have a baby, plans start to form in your head. It’s silly, but you start thinking about what they might do or be, and what they might look like. Then, you find out it’s a girl. You start to think about weddings, and grandchildren.
Then at some point, all of that is over. Forever.
Never, ever think that I compare this to the actual grief of losing a child. It’s different. But it’s bad. It hurts. And what’s more, the mourning happens over and over as the years go by.
So-called experts talk about the grief process. They name the steps: denial (Maybe she’s just a little behind.); anger (Why, God? What did we ever do to you? What did this helpless little baby every do?); bargaining (Whatever you want, God, okay? Kill me, whatever. Okay? OKAY?); depression (What now? How do I face this? Do I even want to try?); and acceptance (I’ll get back to you on this one.) But here’s the thing–the grief process can’t be listed neatly into five little steps. This also implies that there is an end to grieving, and I don’t think there is. I don’t think the pain ever really goes away. It just changes, and hides, and then pops up unexpectedly over the years to hit you again. And again. And again.
Almost eleven years ago, there was a little girl who was supposed to be born. That little girl was going to blaze a trail. Super smart, independent, and ready for anything. She would get married some day and give her mommy a brood of grandchildren to fuss over.
That little girl was never born.
Instead, Evelyn was born. She’s blazing a trail in her own way, and I can’t imagine my life without her. But there are some things I had to let go of–some things I had to mourn, and that I’m mourning still.
I’ve been through every one of those stages, and more than once. Even denial, which I’ve always thought I was immune to, has appeared over the years, usually in my obsessive quest for a diagnosis.
Most of my grief is tied in to the things I feel like she’ll miss out on. All of the nevers. She’ll never get married. Never have kids. Never go to college. Never have a boyfriend break her heart. Never, never, never. I’ve had to let each of those things go, one by one.
Sometimes, that little girl who I thought was going to be born all those years ago haunts me. She skips up and down the toy aisle at Christmas time. She’s out running with her brother on the soccer field. She talks incessantly to me like her brother does. She gets into shouting matches with him, and sings along to songs on the radio. She’s worrying about clothes, and starting to talk about boys. I catch glimpses of her sometimes, but when I turn to look at her, she’s already gone. I have to let her go again.
So you mourn. I think as the years go by, I will learn to get over all of that. Certainly I can “accept” it more now than before. But I’m a firm believer in what I said–that pain never really goes away. You learn to live with it, and yes, even accept it. I think that’s what acceptance really means. Not that you’re okay with the way things are, but that you realize you can’t change it, and you learn to live with it.
Living with Evelyn is the easy part. She’s the joy of my life. She brings something to us that I can’t even explain. She doesn’t know or care about the things she’s “missing out” on (according to me.) She gives me a good example of how to live–live for the moment, forget about yesterday, and don’t worry about tomorrow. Mostly, forget about the things you can’t change.
I’m still working on that one.
The (not so) Perfect Comeback
Don’t you hate when you can’t think of a comeback to some jerk until long after a confrontation?
Most people who know me would probably imagine that I don’t have any trouble snapping back at someone who snaps at me. They would be right. Most of the time, I don’t. I have my share of flaws, but I’m usually pretty quick-witted. I can give a snappy answer when it’s called for–and sometimes when it’s not!
But I’ve had my weak moments.
I don’t know why I started thinking about this story all of a sudden, but it’s been on my mind all day. I guess I’ve just been admiring all the things my daughter can do now, and how far she’s come, and it made me remember a man who told me none of it would ever happen.
Our medical journey with my daughter has been a long one. I won’t go in to all of that. The abridged version is that we made several trips to the Mayo Clinic in Minnesota, and during the last one, we had our first appointment with a developmental pediatrician. We had never seen one of those before. I asked the neurologist out there why we had to see him, and she said, “Well, he specializes in development, so maybe he can give you some idea of Evelyn’s level of development and what you might be able to expect in the future.” I should have been immediately skeptical, but let me give you some insight into my mental and emotional state at that point in time.
I was a wreck.
That was our fifth trip to Minnesota. My daughter couldn’t walk or talk. She was around three years old, but she had the cognitive ability of a little baby. I was running out of options to find out what was wrong. She had been tested for everything. No answers. No diagnosis. Worst of all, no hope. I didn’t realize it then, but I guess some tiny part of me was thinking that if someone could name what was wrong with her, maybe there was something that could be done to fix her. All of that was coming to an end. In addition to the Mayo trips, I had also spent a total of 31 days in Bethesda, Maryland, at a special therapy center that worked with non-verbal kids to try to train their brains to learn speech. It was a wonderful thing for lots of people, but, naturally, it didn’t work out for Evelyn. In short, there really wasn’t anything left for us to do.
So we went to the appointment with the developmental pediatrician. I’m not going to name him, because in a minute I’m going to call him an asshole, and I don’t want anyone who might know him to find out he’s an asshole–you know, in case they didn’t already know.
I have no idea what the man’s face looked like. I couldn’t pick him out of a lineup. I don’t think he ever looked me in the eye. But I will never forget that room, or his stupid gray suit or his stupid maroon tie, or the stupid red leather couch in the office. He went through her chart and asked me a bunch of questions that had been answered eight million times already. He asked me about the therapy in Bethesda. Then he did some standard developmental pediatrician tests on my daughter.
He showed her shapes and colors and tried to get her to match them. She couldn’t. He gave her a pencil and asked her to write. She couldn’t. He watched her crawl, but not walk. The best test, though, was when he showed her a block and then put it behind a little plastic wall on a table. The idea was that she would reach around the little wall for the block–this is the concept of object permanence. Evelyn tried to move the wall to get the block. He had his hand on it, and wouldn’t move it. Evelyn looked at me with that little look she has, like she was saying, “Can you believe this asshole?”
No, seriously, she just grinned at me then quit trying for the block. She didn’t really give a crap about that block, so she stopped trying to get it. He made another note on his little clipboard and went back to his desk. He wrote for a few minutes, then gave me his expert opinion.
To paraphrase, he informed me first and foremost that therapies like the one in Bethesda were a waste of money and basically a scam for gullible people. He also told me that Evelyn was profoundly retarded, and that she probably always would be. She also would surely never walk. My one and only contribution to this monologue was to squeak out, “But she’s pulling up to things now,” to which he replied, “Well, she may walk with assistance, but never on her own.”
And that was it.
Now, there are lots of things I should have said. I should have told him to take a long walk off a short dock; to stick it where the sun doesn’t shine; to screw himself; to take a flying….well, nevermind. I also should have told him that I didn’t realize developmental pediatricians could predict the future with such startling accuracy. How could he sit there after fifteen minutes and tell me all of these things about my little girl? There were lots of things she couldn’t do, but she had come so far, and there were tons of thing she could do. Against all odds, she had learned to roll over, then sit up, then crawl, and she was pulling up to things. Yes, it took her much longer than it took most kids, but that didn’t mean she would never do it! Then I should have stood up, picked up my baby, tossed my head, and marched from the office.
I didn’t.
I didn’t march from that office. I slouched out. I skulked, like a beaten dog. I felt like that. He had just given voice to all of the worst fears in the deepest, darkest part of my heart. He had crushed me–crushed the heart and soul right out of me. I trailed all the way back to the hotel room, got Evelyn a snack, and sat on the bed. It was a low place. I was alone–Evelyn and I had flown out by ourselves, and she was already asleep. I couldn’t tell you if it was raining, snowing, thunder, a tornado, anything. I wanted to cry, but I couldn’t even do that.
I pulled myself together after a while, and talked to The Grandmother and Matt on the phone. I told them the gist of what the DP had said, and we took turns abusing him verbally. It didn’t really help, but it was nice to call him a bunch of dirty names.
I’ve heard the word “vulnerable,” but in all honesty, it’s not really a word that applies to me very often. Looking back, I can see that it was appropriate then. He was literally kicking me while I was down. Once we got home, life went on, and I was able to start moving past all of the things he said. Oddly enough, it was Evelyn’s regular neurologist that made me feel better. Lots of people aren’t crazy about him, because he has a tendency to be very frank, but that’s the very reason I like him. I admitted to him what the DP had said. He snorted. Literally. He said, “How does he know what Evelyn will be doing in a year from now? I regret you had to see him–developmental pediatricians are like tits on a boar.”
I swear, he really said that. It made my day. As time went on, I wished more than ever that I had told him off, and I even wrote a very strongly worded letter. I never mailed it. In a way, I didn’t want to admit to him how badly he’d hurt me. But I think he did me a favor. He gave a face to the enemy. He gave us something to fight against, and, more importantly, something to fight for.
So, Dr. Barberisi? You can kiss my ass. Oh, and Evelyn can walk now, so it should be pretty easy for you to kiss hers, too.
