"No Child Left Behind"...the worst thing that EVER happened to American children with severe disabilities.
Don't get me wrong. This law has been effective for borderline kids, those with very mild disabilities or language lags. Why? Because this law required data-based proof that children are reaching reading and math goals, based on annual tests such as the CRCT. It put principals and administrators of special education to task in a way that did benefit our society and our schools. ALL EXCEPT FOR THE CHILDREN THAT NEEDED HELP THE MOST, and I would add for fiscal thinkers, the ones that will cost the most in the long run if they don't get the proper early intervention.
Look at the organizational ladder of public schools. A great teacher might become an IST (Instructional Support Teacher) and get a hefty raise. The IST then proves herself by raising CRCT scores and lands the lovely job of assisant principal (lounge there while you can is I what I hear). Then principal, coordinator, administrator...and hey! Before you know it, you are the superintendent.
The problem is that children like Tommy can't take the CRCT. Thus, they don't advance the principal, assistant principal or Instructional Support Teacher's standing-no promotion, no raise, no recognition or awards. THINK ABOUT THIS LONG AND HARD and then try to put yourself in our shoes as far as dealing with resources through principals and administrators of what "USED" to be special education in this country but is now simply a race to help the majority and an a catastrophe for MY child.
A school is required to make Annual Yearly Progress-AYP. This progress is based on a test that many kids with disabilities can't take. If the tests aren't up to par, the school gets penalized and put on probation. Neither the principal, nor any anyone looking for a promotion or raise will get one in a school that doesn't make AYP, and this is ALL the responsibility of the school's principal, who these days uses the department of special ed (which USED to put kids with REAL disabilties first)and forces them to prioritize not truly disabled children, but children with extremely mild disabilities, or children who have English as second language. To make the situation worse, IF a school does not meet the criteria for CRCT test scores, it is then penalized, which not only harms the reputation of the school but also all those working in it, basically killing their chances of the promotions and raises they seek.
I have watched principals hire the BEST OF THE BEST in special ed to tutor and teach "resource classes" full of "borderline kids" as they hire the least expensive teacher or para in the area to teach the more disabled children. That is why parents of children with severe disabilities end up in court and lawsuits. And parents of typical kids see us a "difficult" and "complainers". Well, parents of typical kids who may be struggling or borderline in school, congratulations for having the law on your side! Those of us parenting and tending to the schooling is our children with severe disabilities have to take our love for our kids, and the recognition that this law, NO CHILD LEFT BEHIND, harms them, and push for an addendum, a test, something can be added to this law, No Child Left Behind...that would magically give the same incentive to school systems to push our kids toward their goals. A new test, the same pressure on principals, special education departments, Instructional Support Teachers...something that requires THEIR promotion to also include the progress of our kids.
You might argue that our kids have "IEPs" (individual education plans). Unfortunately, these have become weaker and weaker. Children in special ed with severe disabilities now have Pass/Fail grades. And many school systems can write a "P" for progress even if the child has barely even started to meet a goal. The bottom line is that in REAL special ed , it is all about the teacher, the parapro, the therapists and their skills. Sadly, I have found that following in the footsteps of parents of disabled kids who have special ed lawyers (or are special ed lawyers) clear the way in a school for years. Follow the lawyers and make you child's IEP count. It won't be easy/
Sometimes you just get lucky, and we are right now. You get a teacher who really is just there because they love disabled kids. You get therapists who know their stuff, and you get parapros with big hearts. And you supplement where you can to help your kid by finding opportunities for kids with autism to become part of a community of play clubs such as Learning on the Log or Sensations Therafun.
The bottom line though is that our fight, the fight of children with disabilities, is very different from that of the average parent and always will be as long as No Child Left Behind provides no incentives to school systems to intensify their efforts to help the population of kids who need it the most. Without built-in incentives for those who work with our kids, it is a daunting task indeed.
Saturday, August 25, 2012
Thursday, June 7, 2012
A Day in the Life
Quick footsteps and a soft giggle. I roll over and look at the clock. 6:15...I hope for the Daddy to wake up. I hear a yawn and a groan. "Hi, Tommy...want waffle? Come to the kitchen." Tommy runs from room to room naked and full of energy, saying all at once, "Cookie, I want leaf, outside, Mama's car...cookie!" I call out, "Tommy Hedin, you come here right now and snuggle with your mama!" He peeks in, smiles and runs away. I swing myself out of bed with a yawn and head for the kitchen where the Daddy has made some coffee. "Don't HIT me", yells Mark. "Don't hit your Dad! He LOVES you!" I chime in, and add, "Now SETTLE down and eat your waffle!" Tommy sits and smiles. "Juice", he says, and I fetch it happily. "Orange juice ok?" "Yah!" I fill it 3/4 with water and add the juice, hand to him and kiss his cheek. He drinks it quickly and runs for the basement stairs. "PUSH!" He says. "I say, you didn't finish your waffle. First finish it." He goes back, eats some more and then starts to tear and sift it." "Waffle is for eating!" I say."
He runs to the door naked and says, "I want leaf!" I tell him he's naked and needs to be dressed, so he runs down the basement stairs instead. I slowly fill my coffee cup and follow him. I hear a giggle..from the wrong room. Tommy Hedin!! He's in the laundry room pouring the soap out and rubbing it happily onto the floor." "GET OUT OF THERE", I shout, and herd him toward his swing. He's naked and soapy and he jumps on his body swing to begin the superman flight. He flies 2 feet above the floor in a circle. It looks impossible! He's happy. "Superman", I say. Then he runs back upstairs. "Mark, have you given him his gummies (meds)?" I ask. "Yes, I did." I'm waiting for the meds to kick in and for him to calm down some. "Ride car", he says urgently. "Outside". "I want leaf". "Go to your room and let's get dressed", I say. We go into his room and I tell him to "Get the underwear" out of the drawer marked -underwear-he gets 3 pairs and I help him put 2 back. He has trouble putting them on and says, "Meed help", so I help him a little. The same goes for "Get the T-shirt" and "Get the shorts". He's getting better. We can DO this! Finally we're dressed and slightly stressed. "One kiss," I say, and he offers his cheek.
"Mark, I need to pack his lunch can you please watch him while I get this done?" "Yes, I'll take him for a ride.." "Thank you!" The door shuts. I breathe a sigh of relief, pour another cup of coffee and sit down and stare into space. Then I pack his lunch and prepare the backpack for camp. Here they come. We're ready. Kiss. Off they go. Mark drives him to camp.
At camp, he's hyperactive, but once the meds kick in at least he is calm enough to participate and follow directions some, especially in the activities he likes. At the end of the day, most days are good. Today, though, Armann says, "Double-check the meds...he's climbing out of his skin." So we add a small dose and agree to send it to camp for them to administer.
I go to work and it's like a vacation. So pleasant and easy. I come home and enjoy some me-time. Mark calls and says, "I'll pick him up." and then here they come. Tommy gets out of the car naked and runs towards the Jones' shrubs tearing off handfuls of leaves. He then runs to the top of my car to shred, deepening the dent that is already there. "GET OFF MAMA'S CAR", yells Mark and herds him to the porch. I go out and say, "Mark why is he naked? We can't let him run around naked" "I know!" snaps Mark. Sour looks. Tommy sits naked on the church bench on the front porch in the sun shredding leaves happily. He is so beautiful. "We really do have a gorgeous kid, don't we Daddy?" I say, and Mark looks at him and sighs and says, "Yes, we do." I fetch clothes and get him dressed. "One kiss", I say. He smiles and offers his cheek.
In 10 minutes Tommy says urgently, "Ride car! I wanna go! Ride car!" I say, "No, mommy and daddy are tired. Let's rest awhile. Come to my room. I herd him into my room and lie down while he climbs the bureau and jumps from the bureau to the bed 20 times. Finally he shouts, "Open door"! Off we go. "I want sand. I want leaf. Outside." I say ok, and unlock the door. He runs toward my patio and and I holler like a Banshee, "NO NOT MAMA'S PLANTS...GO OVER THERE FOR YOUR LEAVES." He looks at my face and echos, "NO", quietly and heads for the nearly naked fig trees. He strips off the leaves and climbs onto the trampoline. I follow him and watch him smile and shred. "BUMP"...he says, and pulls my hand. I jump with him and we are happy. I try to stop, but he says, "Get up...bump..." so we "bump" until we can't "bump" anymore.
I leave him and go to the kitchen. Mark is grilling chicken. I go to make slaw and pasta. We can sort of of keep an eye on him from here. But then he runs into the kitchen with hosta leaves in his hands. "Dammit, Mark", I shout, "can't I take my eyes off him for 5 minutes!" Mark shouts back, "OK right...you do everything..I do nothing." I say, "That is NOT what I said...can't you move that laptop to a place where you can see the garden?" Sour looks.
We eat. He plays. He yells, "Swim...I wanna swim!!" I agree to take him. Mark gets him in a suit and I throw mine on and we go. He's happy. In the car he repeats, "Swim, swim, I wanna swim" and we play 'fill-in-the-blanks'. I say, "Tommy's gonna swim like a ____" and he says, "FISH"...I say, Tommy's gonna find Nemo and ____" He says, "Dorrie!" We get to the pool and he flies into it, ecstatic. I feel so proud of how well he can swim. He's like a happy seal. "1-2-3! Get IN!", he says. I'm glad he wants me to swim with him. I steal his precious watering can and he says, "Throw it!" We race for it and dive for it. I help him wait in line for the diving board. Some other kid dives for the watering can with him for a few minutes.Then comes the dreaded whistle. "Adult swim", yells the lifeguard and everyone gets out. Except Tommy. "GET OUT OF THE POOL", I say, quietly at first. Second time is louder. Then I dive in and herd him to the edge. "It's adult swim, we're getting out and having a snack NOW" I climb out, drag him out and he throws himself down crying, "I waaa SWIM...SWIM SWIM SWIM." I quietly try to explain what adult swim is and distract him with snacks. It doesn't really work. I herd him into the playground area and latch the gate behind us. He throws himself into the dirt sobbing. He's brown and muddy now. The kids ask, "What's wrong with him?" "Somebody hit him," I lie. "Oh". We finish swimming and he tries to take off his suit at the pool. "NO you can't be naked in public! Tommy wait." He waits and then strips in the car. I turn on the radio and a Beach Boys song comes on. He tilts his head, smiles, laughs out loud and starts his "Egyptian Head Dance"...so I join him, which makes him even happier. We arrive home. So much for snarking at Mark. I try to control him, but he runs naked again to the neighbors' bush.
He plays and I say..."Warm bath?" and he says, "Warm bath.." I stay in the bathroom so he won't pour water on the floor. Finally he says.."UNDER", we go to his room and he throws himself in bed. I sing a song about the day. Everything we did. He smiles and drifts off. I kiss him, and say, "I Love You, Tommy Hedin..Do you love me?" He says, "Yah."
He runs to the door naked and says, "I want leaf!" I tell him he's naked and needs to be dressed, so he runs down the basement stairs instead. I slowly fill my coffee cup and follow him. I hear a giggle..from the wrong room. Tommy Hedin!! He's in the laundry room pouring the soap out and rubbing it happily onto the floor." "GET OUT OF THERE", I shout, and herd him toward his swing. He's naked and soapy and he jumps on his body swing to begin the superman flight. He flies 2 feet above the floor in a circle. It looks impossible! He's happy. "Superman", I say. Then he runs back upstairs. "Mark, have you given him his gummies (meds)?" I ask. "Yes, I did." I'm waiting for the meds to kick in and for him to calm down some. "Ride car", he says urgently. "Outside". "I want leaf". "Go to your room and let's get dressed", I say. We go into his room and I tell him to "Get the underwear" out of the drawer marked -underwear-he gets 3 pairs and I help him put 2 back. He has trouble putting them on and says, "Meed help", so I help him a little. The same goes for "Get the T-shirt" and "Get the shorts". He's getting better. We can DO this! Finally we're dressed and slightly stressed. "One kiss," I say, and he offers his cheek.
"Mark, I need to pack his lunch can you please watch him while I get this done?" "Yes, I'll take him for a ride.." "Thank you!" The door shuts. I breathe a sigh of relief, pour another cup of coffee and sit down and stare into space. Then I pack his lunch and prepare the backpack for camp. Here they come. We're ready. Kiss. Off they go. Mark drives him to camp.
At camp, he's hyperactive, but once the meds kick in at least he is calm enough to participate and follow directions some, especially in the activities he likes. At the end of the day, most days are good. Today, though, Armann says, "Double-check the meds...he's climbing out of his skin." So we add a small dose and agree to send it to camp for them to administer.
I go to work and it's like a vacation. So pleasant and easy. I come home and enjoy some me-time. Mark calls and says, "I'll pick him up." and then here they come. Tommy gets out of the car naked and runs towards the Jones' shrubs tearing off handfuls of leaves. He then runs to the top of my car to shred, deepening the dent that is already there. "GET OFF MAMA'S CAR", yells Mark and herds him to the porch. I go out and say, "Mark why is he naked? We can't let him run around naked" "I know!" snaps Mark. Sour looks. Tommy sits naked on the church bench on the front porch in the sun shredding leaves happily. He is so beautiful. "We really do have a gorgeous kid, don't we Daddy?" I say, and Mark looks at him and sighs and says, "Yes, we do." I fetch clothes and get him dressed. "One kiss", I say. He smiles and offers his cheek.
In 10 minutes Tommy says urgently, "Ride car! I wanna go! Ride car!" I say, "No, mommy and daddy are tired. Let's rest awhile. Come to my room. I herd him into my room and lie down while he climbs the bureau and jumps from the bureau to the bed 20 times. Finally he shouts, "Open door"! Off we go. "I want sand. I want leaf. Outside." I say ok, and unlock the door. He runs toward my patio and and I holler like a Banshee, "NO NOT MAMA'S PLANTS...GO OVER THERE FOR YOUR LEAVES." He looks at my face and echos, "NO", quietly and heads for the nearly naked fig trees. He strips off the leaves and climbs onto the trampoline. I follow him and watch him smile and shred. "BUMP"...he says, and pulls my hand. I jump with him and we are happy. I try to stop, but he says, "Get up...bump..." so we "bump" until we can't "bump" anymore.
I leave him and go to the kitchen. Mark is grilling chicken. I go to make slaw and pasta. We can sort of of keep an eye on him from here. But then he runs into the kitchen with hosta leaves in his hands. "Dammit, Mark", I shout, "can't I take my eyes off him for 5 minutes!" Mark shouts back, "OK right...you do everything..I do nothing." I say, "That is NOT what I said...can't you move that laptop to a place where you can see the garden?" Sour looks.
We eat. He plays. He yells, "Swim...I wanna swim!!" I agree to take him. Mark gets him in a suit and I throw mine on and we go. He's happy. In the car he repeats, "Swim, swim, I wanna swim" and we play 'fill-in-the-blanks'. I say, "Tommy's gonna swim like a ____" and he says, "FISH"...I say, Tommy's gonna find Nemo and ____" He says, "Dorrie!" We get to the pool and he flies into it, ecstatic. I feel so proud of how well he can swim. He's like a happy seal. "1-2-3! Get IN!", he says. I'm glad he wants me to swim with him. I steal his precious watering can and he says, "Throw it!" We race for it and dive for it. I help him wait in line for the diving board. Some other kid dives for the watering can with him for a few minutes.Then comes the dreaded whistle. "Adult swim", yells the lifeguard and everyone gets out. Except Tommy. "GET OUT OF THE POOL", I say, quietly at first. Second time is louder. Then I dive in and herd him to the edge. "It's adult swim, we're getting out and having a snack NOW" I climb out, drag him out and he throws himself down crying, "I waaa SWIM...SWIM SWIM SWIM." I quietly try to explain what adult swim is and distract him with snacks. It doesn't really work. I herd him into the playground area and latch the gate behind us. He throws himself into the dirt sobbing. He's brown and muddy now. The kids ask, "What's wrong with him?" "Somebody hit him," I lie. "Oh". We finish swimming and he tries to take off his suit at the pool. "NO you can't be naked in public! Tommy wait." He waits and then strips in the car. I turn on the radio and a Beach Boys song comes on. He tilts his head, smiles, laughs out loud and starts his "Egyptian Head Dance"...so I join him, which makes him even happier. We arrive home. So much for snarking at Mark. I try to control him, but he runs naked again to the neighbors' bush.
He plays and I say..."Warm bath?" and he says, "Warm bath.." I stay in the bathroom so he won't pour water on the floor. Finally he says.."UNDER", we go to his room and he throws himself in bed. I sing a song about the day. Everything we did. He smiles and drifts off. I kiss him, and say, "I Love You, Tommy Hedin..Do you love me?" He says, "Yah."
Subscribe to:
Posts (Atom)
