Aug 19, 2010
Posted in Daily Ramblings, Down Syndrome, Parenting | View Comments
I must have said that 30 times last night. Thirty times that William decided to wake up crying. Thirty times he wouldn’t be consoled. Thirty times he seemed to have to poop & couldn’t, but didn’t respond to any palpation, nursing or cuddling. Thirty times that I said, “I’ve only got 5 more hours to sleep!” or “I’ve only got 4 more hours to sleep!!” or “YOU ARE TRYING TO KILL ME, CHILD!”
Of course it’s the day before Henry’s 1st day, when I have to get up at 6:30 and coherently prepare his backpack & lunch, get him dressed appropriately, make sure he has all his supplies (including diapers, wipes, baby food & toothbrushes), get a 1st day of school picture where he’s actually LOOKING at me and get him to school by 7:30. Needless to say, he was late. And I literally had to pry my eyelids apart. But he’s at school. And wicked happy about it. He was a bit confused that his familiar teachers weren’t there to greet him and his familiar friends weren’t in the room. This is going to be a interesting transition for him. All his classmates (4 girls & one boy) were sitting quietly at the table waiting for the day to begin. Henry, on the other hand, runs in shouting BOOK! and exploring the room, looking for toys to play with and refusing to sit like the girls were. They have a special desk set up for him away from the others, with his name on it to help facilitate the transition to focused learning rather than being free in the classroom.
This is going to be interesting. I know he’ll get it eventually, but I’ll be curious to see how he gets it and how long it takes.
Our new patio is coming along nicely. They’ve almost got the steps done and then the actual patio stone will go more quickly. Here’s a peek.
Can’t wait to see it finished. It’s going to be gorgeous and I’m so happy about it.
I’m also trying to get off my tail and prepare for this garage sale we’re supposed to have next weekend. There is SO MUCH to go through. Steven & I did about 25% of the basement today and he decided he wanted to get rid of all his Thomas stuff. That blew my mind. He has so much of it and I always thought that would be something he’d want to hang on to. But, the bin is full up of trains, tracks, bridges, buildings and the much-coveted roundhouse. Now to figure out how to price these things. Plus I have to go get a permit (a PERMIT?!? Really??) which is annoying & stupid, in my opinion. I wonder what happens if you don’t get one. I KNOW that more than half of the sales I see signs for every weekend can’t possibly have received a permit. Such a hassle. But I’d better do it. Going to have to finish the basement tonight or tomorrow so I can get a jump on my clothes and go through all the stuff I’ve crammed into the storage room waiting for this day. Probably 20 garbage bags and half a dozen boxes. I hate being productive. I just wanna sleep and play the Sims.
So, hey, if you’re praying, pray that William will SLEEP THROUGH THE %&^*$(% NIGHT. So I don’t go postal or crash into a tree or something.
May 26, 2010
Posted in Daily Ramblings, Down Syndrome | View Comments
Oh my sweet heavens. If the weather over the past week is any indication of what summer’s going to be like here, I’m never leaving my house. I know I really shouldn’t complain because A) last summer was so mild which made the end stages of my pregnancy bearable & B) at least we don’t live in New Orleans, but come ON. I can handle the heat. I don’t love it, but I can handle it. It’s the humidity I cannot abide. My asthma is worse in humidity & I feel like I’m being smothered in a wet wool blanket that weighs 50 pounds. It literally makes me want to die. So, please, God. Turn it down.
Today was also Henry’s IEP. I truly cannot tell you how much I dislike these meetings. Yes, it’s nice to hear that he’s made some progress, but it’s inevitably not enough. And I know that a lot of it is due to what I haven’t done/am not doing with him. But I literally cannot do anything more than what I’m already doing for these 4 kids. I have 2 things I’m doing for myself- going to therapy & trying to walk/exercise. Oh, and napping when I can so I don’t fall asleep while driving. Everything else is taking kids to activities, therapies, school and participating with school activities as I’m able. Already, Steven is resentful of the time spent on Henry’s needs and has no qualms with telling me that he’s sick of it & wants Henry out of the family. So, let’s spend more time giving Henry more attention & hope Steven doesn’t just smother him in his sleep. Sheesh.
So, the basic thrust of the meeting is that pretty much every aspect of Henry’s development falls in the 2.5-3 year old range. For a 6, nearly 7, year old. And I have to just sit there smiling & nodding, as if it doesn’t upset the hell out of me. I HATE this. Especially when I know other kids with Down Syndrome who are already leaps & bounds ahead of him. Who are potty trained. Who are able to participate in games & family outing instead of having to figure out how to do something without him because he simply cannot be a part of it without causing complete chaos. Kids who are part of school programs & church programs & play Wii with their siblings. Who won’t start screaming or throwing stuff or hitting people or simply wander off on their own agenda. I know he’ll get there, I really do. It’s just that right now is hard. It’s difficult to sit and hear what he’s NOT doing (though it is great to hear what he IS doing) and feel the guilt building and building and building.
They did give him this test about whether or not it’s likely that he has Asperger’s Syndrome (because they can’t diagnose it, just use this test to rate him from “very unlikely” to “very likely”. He turned out in teh middle of “likely”. So THAT’S awesome. His receptive language is at about a 2.5 year level but his expressive language is at about 5.5 years. That was a really bright spot. He does a fantastic job matching, labeling and sorting, but can’t yet use that knowledge functionally. For example, he recognizes and says all his numbers 1-10, but if you tell him to give you 2 crayons, he doesn’t know what that means.
Oh, and let me dispel a misconception about people with Down Syndrome. Most people would say that people with DS are accommodating and laid-back and even pliant. Those people need to spend a day with Henry. Cuz dude is so very, very NOT. The main problem they had in their testing & assessments of him was that if Henry wasn’t in the mood to cooperate, he wouldn’t. Period. Nothing would change his mind and if you tried to push it, he’d push right back through throwing the testing materials or physically assaulting the tester. At this point, Henry is completely unable to understand that he is not the center of the universe. He knows what he wants and if he doesn’t get it he will wear you down until you are a nerve-exposed nub. If he wants to watch Little Bear and Steven happens to want to sing his video game music at the same time, Henry will scream for Steven to shut up (“STOP IT!!” “QUIET!!” “GO AWAY!”) until he gets what he wants. If we’re in the car, he expects that everyone wants to listen to what he wants and NO ONE BETTER TALK OVER MICKEY MOUSE, CONSARN IT. Unless you want to spend 2 hours in the car listening to him shout, “MUSIC! MUSIC! MUSIC!” until you rip off your turn signal stalk and stab it into your ear; you’d better put his music on. It’s a horrifying, repetitive circle of doom.
Anyway. We’re set up for next year. He’ll be moving into the Life Skills 2 class with 1st-5th graders. There are 3 girls with Down Syndrome and a boy who I can’t remember much about and should be 2 new kids in there as well. I think it’s going to be great for him to have kids that are more advanced modeling behavior for him. I have very high hopes for next year. Let’s just hope that Henry decides to cooperate.
Major change of topic. I got this fun app for my iPhone for Glee. You can record yourself karaoking the Glee songs and upload them. I played with it tonight and recorded 3 songs. Unfortunately, my headphone microphone is AWFUL and I sound like I’m in a box underwater calling on an old-fashioned long-distance line. But it’s fun to play and upload your songs and then hear stuff from other people all over the world. You can then “gleek” people and when you get a certain number of “gleeks”, you can get free song downloads. I really want Bad Romance, but I need 100 gleeks before I can do it. If you want to hear my awful recordings, here are the links. Alone is here, Somebody to Love is here and You Keep Me Hanging On is here. If you like them, click on the yellow star to give me a gleek!
Apr 3, 2010
Posted in Down Syndrome, Noteworthy, Parenting | View Comments
About 2 weeks ago, I posted about our trip to the Children’s Museum and how I was hyper-aware about people’s reaction to Henry and the way he interacted with the environment. I suggested that I was possible being too sensitive and commenters thought that maybe it was more that they were “learning” from him or just interested because they didn’t have much experience with people with DS. I took the comments to heart and admitted that was wholly possible and maybe I’m just paranoid.
Today, I stumbled upon a drama in the mommy autism blogger community that brought it all home for me. That fully expresses what I, as the parent of 2 children with special needs, feel that others are actually feeling as they watch us in the world.
One blogger (who is not the parent of a child with special needs) did what she thought was a humorous post about a poorly parented child she encountered at the library. She has since removed the post and apologized after some moms bloggers of autistic children came in to say that it sounded like the child wasn’t naughty, she was on the spectrum. If you’re interested in reading the initial post, it has been saved as a PDF here.
THIS, my friends, is what I’m talking about. This is what lies behind many of the looks, sniffs, stares, and slight moving-away that we parents of special needs (PoSN) experience. To be honest, if you have a child like my Henry who has a noticeable delay like Down Syndrome, you get less of it. I believe because people see your child with DS and think, “well, that child couldn’t do any better”. Still insulting, but at least they’re not quietly judging us. Parents of children on the autism spectrum, however, don’t have that benefit of the doubt. Because these children don’t LOOK disabled, onlookers assume the child is a brat, spoiled, poorly parented or “just needs a good smack”. When in actuality, they might be doing the best they can. Literally.
I’m really upset because I wrote a really good comment on another blog that I wanted to share here, but I forgot to save it before I hit “publish” and it hasn’t been approved yet, so I can’t see it. Bah.
I guess my biggest point is that we all need to stop judging. The original blogger had no idea what she was witnessing, but she went ahead and made a judgment about it and mocked it openly. Even after being enlightened about what she might actually have seen, she didn’t apologize. She continued to offer advice on how to better handle a child about whom she knew nothing. A child who, if she was autistic, had been worked with, therapized and had all sorts of goals she was working towards. Which seemed to be pretty obvious, given the way she kept repeating, “I’m being patient, aren’t I?” Seems that patience was something she had been working on very hard. But because it didn’t jibe with original blogger’s definition of patience, she said it wasn’t patience at all.
So this is the attitude to which I was referring. People like this who make us moms of special needs kids feel like we can’t leave the house. Or like we have to apologize to everyone we come in contact with for behavior that’s unusual. Or simply for the fact that our children exist in the world and we had the audacity to bring them where they would have to see them. You may think that I’m being overly sensitive or paranoid, but here is proof of the attitude that is out there judging my Steven and others like him. Out there saying I’m a bad parent because his behavior is unusual or even displeasing in public. And subtly passing on their ignorance, prejudice and judgmental attitude on to their children who hear them talk about these “annoying children” they encountered and who watch their parent completely miss out on an opportunity to teach about differences, acceptance, grace & inclusion. Perhaps they’d be more comfortable if we all just kept our naughty, naughty children behind closed doors where they didn’t have to see it. That would solve everything, wouldn’t it?
ETA: My comment got posted and I want to share it, so I’m adding it here as a postscript.
As the mother of one son with Asperger’s and another with Down Syndrome (and a third who’s showing signs of sensory processing issues), I’d like to say I’m shocked, but I’m not. I spend most of every day apologizing for the existence of my children. For their inability to behave in a way that meets the expectations of strangers. For making others uncomfortable. And for just walking in the room and forcing strangers to admit that these children exist.
What chaps my hide the most? The fact that these people, who have no experience with children who have delays, problems, struggles or just a different way of interacting with the world, have the audacity to tell us what we’re doing wrong. Mostly behind our backs.
I will not hurl stones at this particular example. But, to all those “better parent than you”s out there, I say this. Until you’ve walked ONE DAY in my shoes, shut up. Keep your thoughts to yourself. And, especially if you call yourself a Christian, have a little grace. Realize and UNDERSTAND that you have absolutely NO IDEA what that caregiver is dealing with. Just because you have perfect children who have had no issues learning patience, manners and all that, doesn’t mean that we are not doing our exhaustive best to teach the same to our children. We’ve been trying to teach our 6 year old with Down Syndrome to stop throwing, hitting and scratching for THREE YEARS. And we are consistent. Utterly consistent. But what takes you a month or two to teach your child has taken over THREE YEARS for us.
And remember this: just because a child’s issues aren’t as obvious as my child’s Down Syndrome doesn’t mean they’re not just as real. Just as difficult. Just as frustrating for the parent and the child.
Perhaps instead of chanting some ridiculous mantra to yourself as you attempt to ignore what you see as bad parenting, you can watch as said parent attempts to work WITHIN said child’s parameters to avoid a meltdown. Perhaps you can, instead, assume that this child and this parent are doing the very best they can. And, if you’re very selfish, you can thank your lucky stars that you don’t have to deal with any of this because you & your children are perfect.
Judge not, o observer. Judge not.
Mar 3, 2010
Posted in Down Syndrome, Noteworthy, Parenting | View Comments
I’m tired of tiptoeing around it. I’m tired of pretending like it doesn’t matter. I’m tired of living in a society that treats its most innocent like rubbish. It has to stop.
I know I’m being dramatic. I can’t help it. We all get ferocious when it comes to our kids and how they’re treated by others. When our kids get bullied or teased by their schoolmates, our claws come out. When they get treated like second class citizens by teachers or other adults they come in contact with, we fight back. But imagine if everyone who comes in contact with your child views them as inferior. As a child. As a teenager. As an adult. At best, they’re treated like they can’t understand anything and perhaps ignored. At worst, others laugh at, ridicule and call names right to their face. People see them and snicker with each other, bandying about hurtful descriptors or smile condescendingly and talk about how “cute” or “sweet” it is that your child is out functioning in the world in whatever capacity. I don’t know about you, but I don’t think I could take that. I couldn’t sit by as my Henry was mocked, ridiculed, laughed at, or treated like he shouldn’t exist. But Henry (and others like him) just suck it up and take it. They don’t shout, “Back ‘atcha bee-yotch” or smack somebody in the face or even politely correct their misapprehensions. They just drop their eyes and try to blend into the woodwork, pretending perhaps like they don’t understand or they didn’t hear it. That just sucks in so many ways, I can’t fully express it.
This has to stop. It HAS to. What have we become? Sometimes I think we’ve come so far in this area since we no longer institutionalize people with special needs and they’re being mainstreamed in education, getting the intervention they need and accomplishing more and more every day. But our attitudes in general haven’t changed. We avoid people who are different. We don’t look at them. We don’t talk to them. It’s almost as if we think if we’re nice to them and treat them like actual HUMAN BEINGS, we’ll catch their cooties or something. GET OVER IT. You can’t catch Down Syndrome. You can’t catch autism. You can’t catch Fragile X or cerebral palsy or hydrocephalus or any of the myriad other developmental & cognitive delays that make people “different”. But you know what you CAN catch from these people? Unconditional love. A more inclusive worldview. A redefinition of what it means to accomplish something. Learning what joy, excitement, happiness really are. Finding amazement in little things. Becoming a better person who’s less focused on yourself and what you can get your hands on or how you can climb the ladder. God forbid any of us should catch any of THAT.
Today is a very important day in our house. It’s a day to get the word out about the word “retard” and its derivatives and how very, very hurtful, hateful and disparaging it is. It’s an attempt to get people thinking about how “retard” is no different from the n-word or f**got or any other pejorative word that refers to someone’s race, sex, religion or whatever. It’s no different because it devalues a group of people by making them small. It’s an attempt to get people to stop using that word. Please. Stop using it. It serves no purpose other than to hurt. It makes an entire group of people into nothing more than a joke. THAT IS NOT OKAY. Ever. For any group of people. But especially for this group because they won’t tell you how you’re mistaken in your view of people with special needs. They won’t challenge you, front you down or beat you up for insulting them.
Today, Maggie gave a speech in her school. It was given to the 3rd-8th graders and she nailed it. She took a stand and did something about it. I was so incredibly proud of her. I did tape it, but she asked that I not share it here. Basically, she took the speech that Soeren Palumbo gave a few years ago and added a few bits of her own. Actually, it was some things I’ve written in the past about the subject. Here’s what she added:
We’re a country that’s supposed to be about inclusion. Acceptance. Opportunity. A place that discourages hatred, disrespect and cruelty. But, time and time again, people choose to use a word that has no purpose other than to belittle and deride. Of course, there will always be people who choose ignorance over kindness. Hatred over acceptance. Cruelty over inclusion. But if each of us does our part, we can make that percentage smaller and smaller.
I’m setting this off in its own paragraph, because I want to highlight it. Using the word “retard” or “I’m so retarded” or anything like that (joking about the “short bus”, the Special Olympics, etc) does NOT make the use okay. You’re not simply degrading yourself. Break it down – if you say, “I can’t believe how retarded I acted Friday night!!”, what are you really saying? You’re saying that your behavior on Friday night was stupid, ignorant, embarrassing, or somehow not up to the usual standard to which you hold yourself. And by calling that behavior “retarded”, to whom are you comparing yourself? People with Down Syndrome, people with developmental delays, people with cognitive delays. Don’t deny it – that’s what your sentence is saying. You may not be coming out and saying, “I behaved like a person with Down Syndrome – how dumb!!”, but that IS what you’re saying. It’s exactly the same as saying, “Sorry I’m late – I must be on colored people’s time!” or something similar. It’s absolutely, completely unacceptable. If you compared yourself unfavorably with a group of people based on race, gender or religion, you’d be held accountable. Why should this particular group of people be afforded any less dignity, respect or just plain kindness?
We’re all familiar with the idea of being part of the body of Christ and that we all have a purpose to serve. However, I think most of us haven’t given a lot of thought to how (or if?) people with special needs fit into that plan. Let’s see the whole verse.
The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. 1 Corinthians 12:21-26 NIV (emphasis mine)
I believe that we as the body of Christ aren’t doing a really good job with this, in general. So what do we do? How does God want us to respond? Until we can rewire our society to understand that people with special needs are worthwhile, useful people who deserve respect just like everyone else, we’re going to face ignorant comments, prejudiced viewpoints, incorrect assumptions and all manner of frustrations regarding these people. What I believe is that it is OUR JOB to replace these comments, viewpoints, assumptions and frustrations with God’s. To respond, with love, in a way that teaches, reaches and helps people understand that our children are also an important part of the body of Christ. In fact, if I’m reading those verses correctly, they are a part with special honor and they’re indispensible. What a powerful idea that is! These people aren’t just EQUAL in God’s eyes; they’re given GREATER honor. They’re INDISPENSIBLE. I can’t tell you exactly why, but maybe it’s because God knows they have something incredibly special to share with others and teach us about Him. Maybe.
Best part was that she included Henry. She finished that last bit there and then invited Henry in. He ran right up the aisle, did a lap around the kids, found a chair, sat down, moved to a different chair, got down & went up to Maggie and smacked her, did another lap around the kids and then we went out. The best visual aide ever. Because this is what I believe: an issue like this means nothing to you if it’s not made personal. If you don’t know someone personally who fits into the category, you won’t care. So how can I make you care? Make you know someone. Meet my son. First, just realize he exists and he’s attached to someone you know. Then get to know more about him. Now you know someone that this is about. Now, maybe, you’ll care a little more.
If you don’t care at this point (but have somehow kept reading), meet Henry. He’s a person with Down Syndrome. He’s not Down Syndrome. It’s not who he is – it’s a small portion of who he is. He also is a person who loves animals fiercely – especially cows, giraffes and farm animals – who dances with a passion and joy unlike any I’ve ever seen, loves to sing (and if he doesn’t know the words, he’ll simply insert animal names), adores big, heavy books that he can set on his lap to flip through. He loves his family with abandon. Sometimes a little too much abandon, but still. He has a special affinity for his Pop-Pop. He loves to eat bananas and graham cookies. He digs spinning, Elmo, Yo Gabba Gabba, Little Bear, Signing Time, books about animals, Jack’s Big Music Show, bouncing, wrestling with his siblings. He’s a person. He has things he loves and things he hates. Just like you. Isn’t that something?
If I’ve reached you, even a little bit, please consider going to www.r-word.org and pledge to stop using that word. But, more than that, pledge to start seeing people who are different as the individual human beings they are. Maybe pledge to get to know somebody who has special needs. I promise – it will change your life.
