Sep. 25, 2007 - Where I've Been
I thought I should pop in and explain my absence! My dear friend, Mary Sharp, has been in and out of I.C.U. for the past six weeks. She is two hours away from me in Indianapolis so between working and praying for her and going to see her, I haven't had much energy left to blog.
School is going great! I have super sweet kids this year at the cottage school -- ten in all. We are studying the middle ages. I will be posting more about what we are using for our books this year. We are having an awesome time! Well, okay, I am even if the kids aren't!
I also have a new family member! I just got a rescue dog, a "Golden Doodle." He is ten months old and he is a cross between and standard poodle and a golden retriever. He is sooooo cute! I can hardly wait until my camera gets fixed and I can post pictures. He's ten months old and he's full of joy. I just love watching him leap and run. He makes me giggle.
Another delay in my blogging life is that my computer has crashed again. It has given me the death screen, so please pray I can get it running! I really don't have the extra $$ right now to even take it to a repair shop so I'm going to try and fix it myself. Please pray I have wisdom!
Thanks for checking in! I promise I will be back with full vigor eventually!
Woof!
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Jun. 30, 2007 - Joni and Friends Family Retreat 2007
Joni and Friends Family Retreat
I have been so overwhelmed with the positive experience we had a Joni and Friends, that I scarcely know how to put it into words.
I really didn't know what to expect. I did hope that my twins who have autism, and my other son who has other mental problems, would be able to go to camp in a supportive, safe environment.
But what we experienced, far exceeded our expectations.
First of all, when we arrived, we were greeted by the STMs. STM stands for "Short Term Missionaries." These are people who PAY about $400 to spend the week with us and help us with our children. Each of my children had their own STM the entire week. This person accompanied us to meals, went swimming with our children in the afternoons, and attended all the camp activities with our children.
What a difference! You don't realize what a load you are carrying until someone takes it from you! I was almost lost to have so much help!
Anyway, we drove up the driveway to the Oakwood Inn on beautiful Lake Wawasee in Syracue, Indiana, and were greeted by a whole crew of STMs ready to unload my car and carry our luggage in! They were all dressed up in difference kinds of fun costumes.
Here's a picture of just a few of them:
The young man in the wheel chair is Amos, and he was such a blessing to my older son. He helped with the teens and he just gushed with personality and love for the special kids. I'm sure he inspired the parents and kids using wheelchairs at the retreat.
Anyway, all these people helped me carry in my stuff! And if that wasn't enough, when we all walked in together as a family the entire staff (over a hundred I would guess) stood on each side of the entry way and whistled and applauded as if we were walking the red carpet! It was embarrassing, but the kids were overwhelmed with happiness. You couldn't wipe the grin of their faces. (They do ask if you want a quiet greeting or a loud one -- and we asked for the works.) 
When we got to our room there was a box with a beautiful bow on it. Inside the box were wrapped gifts for each member in our family. The boys were soooo excited. There was also a beautiful memory book hand made by someone with a special couple of covered pages for each day of the week. It's gorgeous and I can hardly wait to fill it up with pictures.
After we got settled into our rooms we went to supper and following supper they had a parade! They had ice cream sundaes and kettle corn for everyone! The parade was awesome. It was a private parade just for our campers. There were firetrucks, a fancy armored car, ponies, motorcycles, police cars and a cute little train. (The train gave rides afterwards!) If you have little ones, gather them around to see the parade!
Everyone in the parade allowed the campers to touch and experience their vehicles! The young man above was very excited to trade his wheel chair for a two-wheeler!
Every morning we were served a wonderful breakfast. We had a delicious buffet at every meal and the food was scrumptious.
After breakfast each morning we all split up into our groups. My twin boys were in the "quiet room" group. This was a group of all ages of kids who needed a more quiet experience. Since the twins aren't used to big crowds of kids, I chose to place them there.
I was amazed. Everyone was so impressed with how my boys got everyone in their room to participate. They said they had never seen anything like it. Most of the kids in that room have autism. And so getting kids like that to play a game or try something new is difficult. But the teachers said that the twins were instrumental in communicating with those children, and that they got the kids to do things that the teachers couldn't get them to do!
Do you know how much that warmed this mother's heart? Why do my boys interact with younger kids this way? I have no idea. They don't have younger siblings. But we do have dogs. And we do have younger kids at church and they are uncles to nieces. But I think the real reason is that God is healing them. And I also believe it's because the same Spirit that dwells in them is that same Holy Spirit that dwells in all God's children.
You have to realize, that just a short few years ago, these boys didn't participte themselves. God is truly healing them, year by year, event by event, experience by experience.
I did have something very disappointing happen. We had some beauuuuutiful pictures of the boys from the first three days of camp. My husband took them with his camera, and since he was taking pictures with his camera, I didn't take pictures with mine. His camera is also a video camera, and he uses a disk right inside the camera. Well, the camera fell to the floor, and because the disk hadn't been formatted (or something like that) it wouldn't bring up the pictures we took after it had fallen on the floor. If anyone knows how we can get those pictures back, let us know!
But here are a few pictures someone else took of the boys in activities:
Isaiah is in the middle looking up.
Don't they all look so peaceful?
So in the mornings, while the kids were all in their classes doing activities with their groups, we parents got to listen to a devotion and then we split up in small groups. I grew to love the women in my group! The women's husbands also met with each other. Our husbands were all in the same group, so it was a lot of fun getting to meet couples in the same tough places in life. We all opened up to one another about the stresses of raising kids with disabilties. Guess what? I found out I'm not the only one freaked out about how messy my house is!
The surroundings couldn't have been more beautiful. We stayed at a beautiful inn on a lake.
In the afternoons kids could go swimming, boating, tubing, rock wall climbing, zip lining, horse back riding, giant swing-swinging, hand biking, crafts, kite flying, and more! My boys mainly went swimming, tubing, boating and Noah went rock wall climbing. I took a scrapbook class and my husband went to a jewelry class. Isn't that funny? Anyway, what follows are pictures of afternoon activities!
That's Noah on the wall! Spiderman!
My honey makes me a necklace.
Tubing is especially exciting for the young people in wheelchairs -- well everyone in wheelchairs, really. Because while they are in that tube, no one knows they use a wheelchair, and they get to be just like everyone else!
Out of the wheelchair and enjoying freedom!
Let's go fly a kite!
On Tuesday night we all dressed up like cowboys and cowgirls and went to a square dance. The boys were so handsome in their western shirts and cowboy hats! (Do you know how HARD it is to find western wear in Indiana? It's not exactly something you can just run and get at Walmart!) At the squaredance we were treated to authentic Amish apple pie and ice cream. Outside, they also had a petting zoo. The kids just loved it. These pictures don't come near to capturing the fun!
After the square dance there were hay rides and carriage rides. Unfortunately, all our pictures of our boys from this night are gone.  But here are someone else's:
On Wednesday night, we took the kids to their STMs for supper, and then all the moms and dads had a lovely "date night!" We got to eat in the fancy restaurant at the inn. After that, we got to go on a beautiful sunset pontoon boat ride. There was also a fruit smoothie/coffee bar available to us. At the end of the night they gave us all a gift -- a really sweet picture frame with the word "joy" etched onto it. The theme of the retreat was Joy.
The reason the date night was such a big deal is that it's very difficult to find a babysitter when you have kids with disabilities. You also can't be spontaneous, or have company very much. When you live with a disability, everything revolves around that. It sucks you dry of fun if you're not careful. It's expensive to get a sitter. I pay anywhere from $6.00-$12.00 an hour for a sitter.
While the parents were on their date, the kids had a carnival!
Isaiah and Isaac took this little girl with autism under their wings all week. She loved it.
Boat dock where we boarded for our sunset ride.
Thursday night was talent show night. Anyone could enter (one act per family). So, our son, Noah represented us! It was a lot of fun watching everyone and being in such a supportive environment. So many people touched my heart that week.
Noah sang the Veggie Tale tune, "Rumor Weed." I was so surprised at how well he did! He was amazing!
Noah also played Nebuchanezzer in a skit his group did that night about Shadrach Meschac and Abednego:
Isaiah and Isaac's group performed a song. Isaiah is in the purple shirt and Isaac is in the gold one:
One of the women I met in our support group made a huge impression on me with her sense of humor. Come to find out -- she's a professional clown! She helped me see the tougher things I go through in a humorous light. Here she is performing a great song with her daughter:
Everyone fell in love with this little baby girl. People couldn't keep their hands off her! She is sooo beautiful.
Friday came too soon. We all had such a good time. I never had to worry about my children. We were in a safe environment in Amish country; we were served by people who had extensive background checks. I have never, ever been in a more positive, nurturing, kind environment.
Not surprisingly, the boys want to do it again next year. I don't know if we can pull it off or not. They got a scholarship this year for part of the cost, but those are usually reserved for first-timers. However, I must say, this was a priceless experience for them. They got to shine. They got to have fun.
And Eddie and I got to eat meals with no one staring. "Normal" at this camp was that everyone was different. Everyone had challenges. And no one stared or pointed or questioned or judged. What a freeing experience it was!
And, as usual, our doggies were glad to see us when we got home. In fact, if they see a suitcase, they get very sad now. Here they are all curled up next to me on the coucc; the Rottie is at my feet and not in the picture:
Thank-you to all those who donated for our family to go. I cannot tell you how much it meant to us. I hope you enjoyed the pictures. I know God is going to bless you real good for allowing us this wonderful experience!
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Jun. 16, 2007 - Important Speech -- Please Read!
Today I'm going to feature an essay by Soeren Palumbo which has been highlighted on national organization websites, including the The Arc of Illinois. Soeren is a senior honors student and big brother to Olivia, who has an intellectual disability. During IllinoisWriter's Week last month, Soeren gave the following speech to a gymnasium full of his high school peers and faculty at Fremd High School, Palatine, IL, and received a standing ovation.
"I want to tell you a quick story before I start. I was walking through hallways, not minding my own business, listening to the conversations around me. As I passed the front door on my way to my English classroom, I heard the dialogue between two friends nearby. For reasons of privacy, I would rather not give away their race or gender. So the one girl leans to the other, pointing to the back of a young man washing the glass panes of the front door, and says, "Oh my gaw! I think it is so cute that our school brings in the black kids from around the district to wash our windows!" The other girl looked up, widened her slanted Asian eyes and called to the window washer, easily loud enough for him to hear, "Hey, Negro! You missed a spot!" The young man did not turn around. The first girl smiled a bland smile that all white girls – hell, all white people – have and walked on. A group of Mexicans stood by and laughed that high pitch laugh that all of them have.
So now it's your turn. What do you think the black window washer did? What would you do in that situation? Do you think he turned and calmly explained the fallacies of racism and showed the girls the error of their way? That's the one thing that makes racism, or any discrimination, less powerful in my mind. No matter how biased or bigoted a comment or action may be, the guy can turn around and explain why racism is wrong and, if worst comes to worst, punch em in the face.
Discrimination against those who can defend themselves, obviously, cannot survive. What would be far worse is if we discriminated against those who cannot defend themselves. What then, could be worse than racism? Look around you and thank God that we don't live in a world that discriminates and despises those who cannot defend themselves. Thank God that every one of us in this room, in this school hates racism and sexism and by that logic discrimination in general. Thank God that every one in this institution is dedicated to the ideal of mutual respect and love for our fellow human beings. Then pinch yourself for living in a dream. Then pinch the hypocrites sitting next to you. Then pinch the hypocrite that is you. Pinch yourself once for each time you have looked at one of your fellow human beings with a mental handicap and laughed. Pinch yourself for each and every time you denounced discrimination only to turn and hate those around you without the ability to defend themselves, the only ones around you without the ability to defend themselves. Pinch yourself for each time you have called someone else a "retard".
If you have been wondering about my opening story, I'll tell you that it didn't happen, not as I described it. Can you guess what I changed? No, it wasn't the focused hate on one person, and no it wasn't the slanted Asian eyes or cookie cutter features white people have or that shrill Hispanic hyena laugh (yeah, it hurts when people make assumptions about your person and use them against you doesn't it?).
The girl didn't say "hey Negro." There was no black person. It was a mentally handicapped boy washing the windows. It was "Hey retard." I removed the word retard. I removed the word that destroys the dignity of our most innocent. I removed the single most hateful word in the entire English language. I don't understand why we use the word; I don't think I ever will. In such an era of political correctness, why is it that retard is still ok? Why do we allow it? Why don't we stop using the word? Maybe students can't handle stopping– I hope that offends you students, it was meant to – but I don't think the adults, here can either. Students, look at your teacher, look at every member of this faculty. I am willing to bet that every one of them would throw a fit if they heard the word ****** or ****** – [or]++++ the word Negro – used in their classroom. But how many of them would raise a finger against the word retard? How many of them have? Teachers, feel free to raise your hand or call attention to yourself through some other means if you have. That's what I thought. Clearly, this obviously isn't a problem contained within our age group.
So why am I doing this? Why do I risk being misunderstood and resented by this school's student body and staff? Because I know how much you can learn from people, all people, even – no, not even, especially – the mentally handicapped. I know this because every morning I wake up and I come downstairs and I sit across from my sister, quietly eating her cheerio's. And as I sit down she sets her spoon down on the table and she looks at me, her strawberry blonde hair hanging over her freckled face almost completely hides the question mark shaped scar above her ear from her brain surgery two Christmases ago.
She looks at me and she smiles. She has a beautiful smile; it lights up her face. Her two front teeth are faintly stained from the years of intense epilepsy medication but I don't notice that anymore. I lean over to her and say, "Good morning, Olivia." She stares at me for a moment and says quickly, "Good morning, Soeren," and goes back to her cheerio's. I sit there for a minute, thinking about what to say. "What are you going to do at school today, Olivia?" She looks up again. "Gonna see Mista Bee!" she replies loudly, hugging herself slightly and looking up. Mr. B. is her gym teacher and perhaps her favorite man outside of our family on the entire planet and Olivia is thoroughly convinced that she will be having gym class every day of the week. I like to view it as wishful thinking.
She finishes her cheerio's and grabs her favorite blue backpack and waits for her bus driver, Miss Debbie, who, like clockwork, arrives at our house at exactly 7'o'clock each morning. She gives me a quick hug goodbye and runs excitedly to the bus, ecstatic for another day of school. I watch the bus disappear around the turn and I can't help but remember the jokes. The short bus. The retard rocket. No matter what she does, no matter how much she loves those around her, she will always be the butt of some immature kid's joke. She will always be the butt of some mature kid's joke. She will always be the butt of some "adult"'s joke.
By no fault of her own, she will spend her entire life being stared at and judged. Despite the fact that she will never hate, never judge, never make fun of, never hurt, she will never be accepted. That's why I'm doing this. I'm doing this because I don't think you understand how much you hurt others when you hate. And maybe you don't realize that you hate. But that's what is; your pre-emptive dismissal of them, your dehumanization of them, your mockery of them, it's nothing but another form of hate. It's more hateful than racism, more hateful than sexism, more hateful than anything. I'm doing this so that each and every one of you, student or teacher, thinks before the next time you use the word "retard", before the next time you shrug off someone else's use of the word "retard". Think of the people you hurt, both the mentally handicapped and those who love them. If you have to, think of my sister. Think about how she can find more happiness in the blowing of a bubble and watching it float away than most of will in our entire lives. Think about how she will always love everyone unconditionally. Think about how she will never hate. Then think about which one of you is "retarded".
Maybe this has become more of an issue today because society is changing, slowly, to be sure, but changing nonetheless. The mentally handicapped aren't being locked in their family's basement anymore. The mentally handicapped aren't rotting like criminals in institutions. Our fellow human beings are walking among us, attending school with us, entering the work force with us, asking for nothing but acceptance, giving nothing but love. As we become more accepting and less hateful, more and more handicapped individuals will finally be able to participate in the society that has shunned them for so long. You will see more of them working in places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope more than anything, one of these people that you see will be my sister.
I want to leave you with one last thought. I didn't ask to have a mentally handicapped sister. She didn't choose to be mentally handicapped. But I wouldn't trade it for anything. I have learned infinitely more from her simple words and love than I have from any classroom of "higher education". I only hope that, one-day, each of you will open your hearts enough to experience true unconditional love, because that is all any of them want to give. I hope that, someday, someone will love you as much as Olivia loves me. I hope that, someday, you will love somebody as much as I love her. I love you, Olivia."
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May. 9, 2007 - Special Olympics & April
My twin boys who have autism competed in the Special Olympics Saturday. Isaiah won the gold and Isaac won the silver for the 400 meter walk race!
My boys are the guys in the blue shirts. 
Isaiah, Gold; Isaac Silver. Woo Hoo!!
I have never been to a Special Olympics event so I was unprepared for how it would affect me emotionally.
I was inspired beyond words. Not only did the athletes inspire me -- but their caregivers inspired me, too.
My chest filled with unspent tears as I watched the torch being carried laboriously, vigorously, and joyfully from one runner to the next. One little boy with cerebral palsy ran with all his might, the torch held high above his head as he tripped along with clumsy determined steps. A nonverbal lady with a neurological disorder that affected her muscles as well as her mind held the torch tremulously high and smiled with all her might as she was pushed in her wheelchair by a young Jr. High school boy. How can that not affect you when you see that kind of spirit?
The parade was a blast -- I waved my heart out so that the athletes would have someone to wave back to. The VFW Legion guys carried our nation's stars and stripes. A police woman sang the national anthem. It was truly a grand way to start an inspiring day.
I had just as much fun cheering on the other athletes as I did my own sons. The athletes had overcome so many things to be there. You couldn't help but be inspired by their enthusiasm.
One little athlete named April also taught me a spiritual lesson. She is only about 8 years old and has down syndrome. Her beautiful shiny, thick blonde hair bobbed up and down as she ran. She was all smiles and running her heart out until she saw that the girl in the lead was so far ahead of her that she could never catch up with her.
April stopped. She turned around. She started to walk off the track.
"Go April!" the crowd shouted. "You can do it! You can do it! Keep going!"
An adult volunteer on the sidelines began to run along beside her clapping, "Come on! You can do it! Keep going! Go, go, go!!"
"Go, April!" I shouted. "Go, April!!"
April tossed her hair back, and began to run again. With people cheering her on, and the crowd clapping, she made it to the finish line and into waiting arms for a big warm hug. What a triumphant finish!
What a great picture this was for me of our race. We might stop sometimes in our race, wonder if what we're doing is worth it or not. We might see someone else's race and realize they are so far ahead of us that we will never be as accomplished or as far along as they are. We might look back and try to go back to where we came from, or think of getting off the track. But because we run along with the saints -- God's people -- they will encourage us to keep going forward. They will help us to keep our eyes on the finish line -- and to ultimately end up in the Father's open arms.
It reminded me of the great cloud of witnesses in heaven:
"Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us. Hebrews 12:1"
I hope I will always remember April's race. I hope I will remember how she didn't give up, and when she felt like quitting, friends were there to encourage her. I hope I will remember how she drew strength from those friends, and how she tossed her head back and ran with joy to the finish line.
I hope I can remember how she enjoyed the journey, and how good it felt in the end to get that welcoming, warm embrace.
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May. 1, 2007 - New Shoes and Special Olympics
My twin boys have come such a long way.
There are so many little things they have overcome, and they are happening now so quickly that I mustn't forget to celebrate each one.
New shoes for example.
I remember when shopping for new shoes was hell. They refused to let me put a new pair of shoes on their feet. It was awful. I would leave the store panting and sweating from wrestling them to try on just one shoe so I could be sure it fit.
Leave alone the fact that Isaiah just could not understand why he couldn't have pink Barbie shoes. I suppose in a perfect world he could. But not in this red-blooded American neighborhood. And we would all leave the store in tears of frustration with one another, sweat pouring down my back, my face red withe embarrassment of their blood-curdling screams.
But they are 12 now, and guess what? They went shoe shopping to get some running shoes for special olympics and I didn't leave the store sweating and panting! They tried on their shoes. They liked them. They wore them. Simple as that.
Just as it should be.
I am in awe of them. I am in awe of how hard they have worked to overcome so many things.
And now on Saturday they will run like the wind in their new shoes.
"These shoes go fast, Mom," they say.
You are growing fast, my sons. You are growing fast and I am proud. Run, my boys. Run like the wind! Run and run and run to victory!
But even if you don't -- you have are already my champions.
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Apr. 11, 2007 - Showers
Our latest struggle with the twins with autism is getting them to take a shower.
"I took shower Monday," they say. Or, "I don't stink."
They are 12 now, and trust me, at the end of the day, they stink. But of course, when you are twelve, autistic, and hate baths and showers, you are going to come out smelling like a rose to yourself at all times. It doesn't matter that you rode your bike for miles or chased bunny rabbits and built forts in the yard. You smell good. You smell as good as the dog, and that's a great smell.
So, since 12-year-old boys with autism don't think they stink, this is my nightly speech. I say it with my eyes bugging out and my boys giving me an open-mouthed, blank stare:
"You aren't babies anymore. You are young men. Daddy takes a shower everyday, Mommy takes a shower everyday, your big brothers take a shower everyday, the doctor takes a shower everyday, the mail lady takes one everyday, and Miss Mary, your teacher, takes one every single day. That's what you get to do when you grow up! And you are almost all grown up now!"
Sometimes, after the speech is ofer, it gets a smile, and an embarrassed giggle, but other times they just continue to give me the blank stare.
I hate that blank stare. I hate it because it means, "I have shut down, I am back in my autistic world where I am safe from anything you might ask of me and I'm not coming out until I'm good and ready."
However, I'm beginning to think that they like hearing and watching Mom's bug-eyed speech about how they are young men and almost grown up. I think it's just a reflex to cry and complain about the shower and they love the predictable response of a spassed out, stressed out Mom. It is part of the structure they have grown to love wrapping themselves up in like a security blanket. If Mom isn't spassed out, then something is wrong, because Mom is usually spassed out when she talks to us, think they.
Sure, I know that they have always been tactile defensive when it comes to taking their shower. I know that since they were infants they would scream when the water would touch their skin. But it isn't as painful for them as it used to be. It does annoy them -- the water touching their skin -- but it doesn't hurt them. And they have got to learn now that being a stinky person isn't a good way to make friends and influence people!
It's not that they completely hate the water, either. Both boys are excellent swimmers, but Isaiah would just rather watch than actualty swim much of the time.
Isaac is part fish, I think.
The only reason they can swim is because we ahve always had access to a pool or had a pool. I don't even remember the moment they learned to swim. I don't even remember when they were not afraid to put their face in the water.
But I do remember when they were infants, babies and toddlers that I would just wash their hair as fast as I could using a cup to rinse their hair. It didn't matter how I did it because they were going to scream at the top of their lungs anyway. From the moment they heard the bathwater running until they were swaddled in a thinck, Downy-smelling towel in my arms, their screams filled the entire State of Iowa where we lived.
Can't the lawmakers hear these kids' cries? Can't they hear the parents weeping because they can't go anywhere, eat a meal as a family, or even open Christmas presents around the tree? Can't they see the many things we miss because we love children with autism? Aren't they hearing those nightly shower speeches every night? Where is the help we so desparately need?
I guess right now I should be thankful that my issues are pretty simple. Taking a shower will probably always be something the boys don't want to do. I understand from people who work in group homes that their clients don't like to shower, either.
I wonder if the water was bubble gum flavored if it would be any easier....
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Feb. 20, 2007 - Combat Pay or Confessions of a Weary Mom
Moms with boys should get combat pay for getting them up out of bed and ready for school each day. But Moms with AUTISTIC BOYS should get DOUBLE combat pay! I have twins with autism and a son with bipolar. None of us are sunflowers in the morning.
I am exhausted by the time we arrive at the church for cottage school each morning! Wait, who am I kidding? I'm so exhausted and frustrated and overhwhelmed after getting them ready every morning I can hardly haul myself into the van's driver's seat to drive to cottage school!
The mornings, no matter how organized I am, are hectic. I don't handle hectic with very much grace. I want to. I know I should, but it's just plain hard.
I get up before they do. If I am doing what I plan to, I get to exercise for about 20 minutes before waking them up. I switch laundry and pack their snacks and lunches before waking them up. I locate an outfit for each of them because they cannot pick out an outfit for themselves.
Then, I holler down to their rooms to wake them up. The twins wake up without a problem, and they come bounding up the stairs picking at each other every step of the way. The son with bipolar has a very difficult time waking up in the mornings and is a snap dragon. It takes me three or four tries to pry him from the blankets.
People with typical children don't understand. They think a few consequences for this bipolar child would solve all his getting up issues. They don't understand that kids with bipolar have a very, very difficult time waking up. They stay in a lethargic dream like state until about noon every day. It is a real challenge.
Okay, so, they are up. I have their oatmeal ready for them to eat after they get dressed. I wake up their dad and ask him to help out, but he has ADD, too, so gets distracted by "The Beverly Hillbillies" or "The Three Stooges" and forgets to help the boys get ready.
I take a whole 15 minutes to shower, put on my make-up, fix my hair and get dressed. (Hey, when you have kids like this, you learn to do things FAST!) You would think in that amount of time the boys could have found their backpacks, snowpants, boots, etc., and be ready for me when I launch myself out of the bedroom and fly down the hall to grab my coat, brief case and purse.
Nope.
Dad is knee deep in the stooges, and I am knee deep in trying very hard not to loose it. The twins are picking at each other, fighting over the sack of snacks. The bipolar son is getting more and more upset with his noisy, noncompliant brothers. One of them can't find his shoes. Another one doesn't remember where he put his reading book, and on and on it goes.
It would seem so simple. Trust me, it isn't.
I don't know why I think it will be different every day, but I do. I still dream and hope for that one smooth morning, when all the underwear fits, the socks match, and the shoes are in the closet where they are supposed to be.
But the fact is, I am so exhausted by the time the boys go to bed at 8:00 PM that I can hardly move. In fact, moving is the last thing I want to do. I sit in my chair while my husband watches something silly on TV and stare off into space until I drift off to sleep. This means that the prime time I have for cleaning and organizing for the next day drifts off with me into la la land. And so the nightmare repeats itself the next morning.
Listen friends, please don't judge that Mom with the exhausted look on her face who's wearing socks that don't match her outfit. Don't judge those autistic adolescent kids who show up to school with holey sweat pants instead of the jeans she set out for them. Don't assume that their life is in any way similar to living with typical people with no mental or cognitive disabilities because it's not. Not even in the very least way. There are no quiet evenings at dinner, no simple family conversations, no outings without crisis. There is only survival. There is only a promise of the sun coming up again the next morning bringing with it all the antics and angst only children with behavioral disabilities can bring you.
But with all those crazy moments, there is one overriding thing that does bring hope to mothers exhausted and wrung out. And that is the love shown through unexpected hugs and kisses from those autistic boys whom she was told would never be able to display affection.
Love might not solve problems. It might not find those lost pairs of socks and missing book bags. But it does provide fire to the bones and enough fuel to face just one more day. Where there are special ed teachers, they will not remain, where there are therapies, they will cease, where there are social stories, they constantly change and where there are developmental pediatricians, they will fade away.
The only thing that will remain out of all these things is love.
The greatest of these is love. There will always, always be love, bigger than the sky, higher than the Empire State Building and deeper than the darkest ocean.
And for me, that love is what gets me through. It is love that keeps me waking up and trying again, hoping for, and dreaming for -- my boys. One day at a time, one tantrum at a time, one lost mitten at a time, we will make it. It might not be pretty, and it might not always be fun. But it will always, always, be worth it.
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Jan. 30, 2007 - Cooking
My twin boys who have autism love to cook. I am being stretched. The two of them in the kitchen are like two young raging bulls. They squabble and whine about who is getting to do what. It's enough to make me want to give up having them "help" me. But I know these are skills they are going to need in life. And it just brings them so much joy! They are so cute when they're cooking.
Today we made pancakes and sausage. They were so proud. They are big eaters, so learning to cook is going to be something they will always enjoy.
I would like to try them one at a time in the kitchen, but if I don't have their dad at home at the time I'm cooking, that won't work because the other twin won't stay out of the kitchen.
They were filled to the gills with eggs, sausage and pancakes all made by them. And I never heard "I'm hungry!" all afternoon and evening! I think it must have been a success!
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Nov. 4, 2006 - Sometimes
Sometimes I have to admit that there is just nothing I can do for my kids. That's when I have to give it to the Lord and let Him handle it.
My son who is bipolar is testing us. He is 15. All I can do now is believe in the seeds of greatness, of love, of God's Word that I've planted in him, and pray, pray, pray, pray, pray.
It is hard to let go and let him make his own mistakes. It is hard to keep the faith that God loves my son more than I love him. I have to believe that God has a plan for him, and that God will not take His hand off of his life.
My heart is breaking, but I cannot loose hope, and I cannot loose faith. I have to just keep my eyes on the prize and just believe no matter how it looks, that God is up to something good.
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Oct. 8, 2006 - Making Lists
I used to be a huge list maker. I loved lists. I would spend hours making lists and then implementing them. But that was B.A.: Before Autism.
I still make lists -- but I make them for things such as "things to pack" or "things to bring to church" or "things to get at the store."
I was reading a time management article today and it struck me hard how making lists -- that is, plans -- wasn't something that I could do very well once Autism hit our house.
For example, let's say I've made a list to get six important things done today. Well, that would mean I could get those six things done as long as:
1. Nobody wet the bed
2. Nobody needed a trip to the emergency room
3. Nobody spread feces on the walls
4. Somebody didn't get into the refrigerator and eat a jar of mayonaise and peanut butter and spread it all over the counters and then throw it all up on the living room carpet
5. The gallon of milk remained pour-spout side up all day in or out of the fridge.
6. Someone doesn't manage to have a three hour tantrum
7. It doesn't take more than several hours to shower because someone keeps banging their head on the wall and screaming while refusing to cooperate about getting their hair washed
8. The two packs of expensive deli meat I had "planned" to use to make sub sandwiches isn't devoured or fed with sheer abandon and delight to the dogs
9. The dogs aren't let out in the street and the police come calling to issue a citation for dogs without a leash
10. The boys' third pair of dirty jeans for the day turn out to be the last clean ones left and the washer is broken.
Anyway, you get the idea. (I'm sure I'll be editing that list later. I am frankly exhausted right now from living another day in the trenches of autism!)
If I sound like I am whining, I guess I am. I sometimes do look at people with "perfect" little families and wonder what it's like to eat a without the mess and stress of my boys' behaviors. What would it be like to prepare a meal in a nice, clean, well-organized kitchen without interruptions? It must be absolutely heavenly.
Don't get me wrong, I do not value list making over the lives of my boys! Gracious me, no. No, I just feel the need to be real sometimes and whine a little and mourn a little for the many things I've lost to this disease.
Time management? I think that must be for people who live in the land of somewhere else. It certainly isn't possible in Autism country!
I would be able to get more done if I weren't emotionally bankrupt after the boys go to bed and I just sit and stare at the walls until I feel my brain make it's way back into my head and I can feel my limbs again. I just throb from stress at the end of the day. Write when the children sleep? Clean? Sleep comes swiftly once the brain is back in place.
I do get concerned when I look at them now, so tall and strong, and 11 years old. They are man-sized now. They are going to be big, powerful men. It does scare me. How will I handle the teen years?
My guess is -- one minute at a time -- and without any lists at all.
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Sep. 28, 2006 - The Lastest Obsession: Frogs!!
"10 little speckled frogs
sat on a hollow log
eating some most delicious bugs,
YUM YUM
 One jumped into the pool
where it was nice and cool
Now there are 9 speckled frogs
GLUB GLUB
9 little speckled frogs
sat on a hollow log. . ." etc.
--Girl Scout Camp Song
Frogs are the latest obsession. It has been a bone of contention around here for me because if one of the twins catches a frog, the other twin cries and cries. My twin boys with autism are 11. They function cognitively at about a five year old level. This was a real issue for me and really getting on my last nerve when I realzed something:
THEY ARE TOUCHING FROGS!!!
These are the little boys that couldn't even touch a wash cloth before -- and now they are touching toads and frogs! Not only touching them but catching them!
This didn't happen spontaneously. At our cottage school, other little boys and girls are very into finding frogs and toads right now. And since my little boys are great imitators, they want to touch and find frogs, too!
I am learning right with them about all the different kinds of frogs there are! It's really amazing! So far we have found the common toad, and a green frog and a wood frog.
Toads, frogs, slugs, crickets -- they are all a part of the collection of critters the boys are enjoying.
 Wood Frog
Isaiah still doesn't like it when the frog jumps or the crickets jump. He won't personally catch them, but he will touch them.
Isaac is doing everything with them on his own!
I think it will be a sad day for them when all the critters go underground for the winter. But it won't be long until they move onto something else to obsess about! Ribbit!
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Sep. 1, 2006 - Cottage Schooling in Indiana
We began our new school year August 15. When I was homeschooling at home without the cottage school, I home schooled year 'round. But I like having my summers off now to just do summer things, and enjoy my children without the push, push, push of learning academics!
I know a lot of people believe in "unschooling." I think that is an incredible option for kids who are self-starters and read well and are bright enough to be curious and want to learn new things. But for my children with special needs, I find I need to push them to try new things.
My twin boys, age 11, have autism. New things are scary for people with autism. Their primary emotion is fear. So anything new is troubling to them. My boys ask me over and over again about what is coming next, or what is going to happen over the weekend, or at church, just so they won't be surprised by anything unexpected. They have a high level of anxiety and just getting through a regular day is very difficult for them. When I can, I use a visual schedule to help them get through the day, and we try as much as we can to keep to the same schedule if not daily, weekly. Still, real life is not the same each day, so each day presents its challenges.
I find myself feeling very frustrated sometimes and at other times angry at the disease that has wracked my twin boys' brains. It's not fair! It's not right! And I look forward to heaven so much when their tongues will be loosed and they will be able to speak and sing clearly!
My 15 year old is diagnosed with bipolar, and sematic-pragmatic disorder which manifests behaviors similar to Asperger's Syndrome. He is also considered "gifted." This only means he has a higher IQ than the average person. (I believe we are all gifted!) He is much more intelligent than I am and is able to do math far above my level, which is why I am grateful for the math teacher that we have. She has a degree in computer science and is a math whiz herself!
I have another student in modified 10th grade, with mild mental retardation, and another student with severe emotional issues who is in a modified 2nd grade. Both of these students exhibit the symptoms of oppositional defiant disorder.
How on earth am I able to teach children with ODD? The If-Then chart! It works WONDERS! Check it out!
This is how our day goes at Liberty Christian Academy Cottage School. (http://libertyscholars.com).
First, when the students arrive, I have already placed seat work at their desk for them to do. For the older students it's usually a puzzle (Sudoku is a popular puzzle of choice this year) and for the younger it is usually a simple crossword puzzle with pictures for them to color with markers if they wish. No one is required to do the coloring, but you'd be amazed how often even the 10th graders get out the markers and enjoy decorating their papers!
I have posted a purple poster at the front of the room that lists everything the students need to remember to do when they first arrive: Use the rest room, fill their water bottles (we keep water bottles at our desks at all times because water lubricates those brain cells!), and get out their supplies and Bibles. They are also encouraged to write prayer requests on the board. I used to go around the room and ask for prayer requests but it took up a lot of time. This way, they are written down and I won't forget to pray over anything.
By 8:15 AM everyone has arrived and we do our pledges to the flags and Bible. The child with extreme emotional issues is allowed to wiggle a little during this time. All the other children are encouraged to be as respectful as they possibly can be. I am very proud of the students' progress in this area. I think it proves that what you expect from children no matter what their abilities, you will get.
This year we are learning to sign to some patriotic songs, so after we say our pledges we practice one of the songs we are learning. Then, we sing an old hymn out of an old hymnal.
After we sing we are seated and we pray over the prayer requests. I usually pray and I pray about issues we're having in school and the kids are having at home. We have seen so many miracles as a result of this prayer time!
Then we have a short Bible lesson. Right now I'm using Considering God's Creation by Moritmer and Smith. It's a science curriculum but since we are studying Ancient History this year, it is really a wonderful way to start the year. Once a week we study martyrs and missionaries, too.
We close chapel by reciting the Lord's Prayer and setting up tables for snack time and lunch time.
By now it is 9:00 AM and we split up into classes. All the students except the 10th grade boys do math at this time and I work with the 10th grade boys on English and Life Skills as well as Latin, Greek and Speech.
After recess I read out of a classic to everyone. I encourage the older students to listen to the good grammar and the descriptive phrases. But to be honest, they love the stories as much as the younger children! I am reading the Burgess Animal Book by Thornton Burgess aloud right now. I pull real pictures of the animal I am going to read about off of the internet and pass them out before I read for the students to look at or even color if they wish. This keeps their hands busy during this time.
After the read aloud the younger students are assigned an older student to read to while I work with the beginning and struggling readers. The little guy with emotional problems is so self-defeating it just breaks my heart. He gets extremely upset before he even tries. He is thoroughly convinced he can't do it. The fact is, he really does have a difficult time, but this is the first year I'm seeing progress, and that makes sense because he is nine years old now, and a lot of boys can't decipher letters until then. He is a brilliant little mathematician. He must get it from his grandmother who is the high school math teacher! :-)
After the beginners read to me, I assign practice reading for the evening hours with family. Usually I only assign about 15 minutes of homework because I don't believe in taking up the entire evening with homework when these kids haven't been with their parents all day long. They need a stress-free, bonding-time with their folks, and if parents wanted to home school their own children they wouldn't be sending them to me for school!
After reading it's time for the older boys to have math while I work with the girls in 7th and 10th grade in English, Life Skills, Greek, Latin and sometimes Home Ec.
Ooops. I need to back up. While I'm working with the older students in their subjects in the mornings, I also work with the little boy with emotional problems. We had a rocky start this year, but he is doing better now. I have learned that he loves to stamp his own paper -- so that's been a great motivator for him! Whew. God is so good. I wasn't sure if I could take another year of working with him, to be honest, but he has really done well this past week. I covet your prayers working with this little guy! And so does his grandmother!
At noon the child with emotional issues goes home with his grandmother to do homeschool activities. He is just not able to handle a full day of school. After lunch and recess we have another reading time where the students are read to.
Afternoons are spent studying chess, science, history and whatever else we need to do. We do a lot of nature studies as well as field trips that help the students with real life skills such as counting their change after ordering a meal, or budgeting for a shopping trip. But we also do a lot of trips that are just plain academic. I love history the most out of all our subjects so we do a lot of field trips that have to do with history. And we take one camping trip every year in September. This is to help the students identify with living without electricity and other conveniences of modern society.
I do have two adults helping me full-time with the younger students, and two part-time adults who help me with math and art. They are a true blessing to us as they all volunteer their time here! I am so grateful to God to be able to put my children in this homeschool-friendly environment with homeschool philosophies and ideals. I home schooled my other children for 13 years before starting this cottage school 4 years ago! God is good all the time and all the time God is good!
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Jul. 10, 2006 - Gift Exchange Night
One Sunday evening each month our church has Gift Exchange Night. That's a time when everyone has an opportunity to share a poem or a testimony or a talent the Lord has given them with the congregation. It's a really fun night, and it really bonds us as a church as we are encouraged by one another in such a special, pure way.
Last night my son, Isaac, age 11, who has a diagnosis of autism and other things, got up in front of the congregation and read the words to the song, "Jesus and Others And You." It was his idea. He loves reading out loud. Woo hoo! Progress!! I was so pleased. We also led the congregation in singing it.
I have been singing that song since I was a little girl, and it is such a simple truth to remember:
Jesus and Others and You
What a wonderful way to spell JOY.
Jesus and Others and You
In the life of each girl and each boy!
J is for Jesus for He has first place
O is for others you meet face to face
Y is for you and whatever you do!
Put yourself third
And spell
JOY!
Then Isaiah, Isaac's twin, who has the same disabilities, decided he wanted to share something. I had no idea he was going to do this.
Let me back up a little. First, you should know, we are a small little church, and we are not formal. My husband is the pastor, and the people in our church are very loving and accepting. We have a lot of special needs people who attend, and it is just a really warm community -- like a real family.
Okay, so, in this atmosphere of love and acceptance, Isaiah went up to the Clavinova (electronic keyboard) on stage. I play this keyboard in all the services. Well, I didn't realize it but Isaiah had figured out the preprogrammed music in it. He went up to the piano, pushed a button, and a classical song began to play. You can't see the keyboard from the congregation, as the back of it faces out. So, when Isaiah popped his little head over the top of the music stand and just grinned from ear to ear, it looked like he was really playing it! It was hilarious!
He'd look down at the keyboard, look up and grin ear to ear, look down at the keyboard, look up and grin. And then, the most hilarious thing of all -- the thing that almost made me wet my pants laughing -- he scratched his head! It made it look like he was playing that song with his toes!!
People in the congregation were laughing with red faces and tears. It was such a precious, funny thing. Isaiah thought he was really doing something -- or did he know he was being funny? I don't really know. But it was a moment of pure joy. And we all got to enjoy it.
My little boys bring me such unmeasured joy. I love being their Mom!!
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Jul. 6, 2006 - Tantrums!
I have tantrum stories that would keep you reading for days. My twins have autism, and tantrums are a multi-times a day occurence. Especially at Walmart. Walmart is sensory overload for them. One day when they were about 5 or 6 we went into Walmart to get a few things. They were too big to ride in a cart. Anyway, I don't know how we ended up over by the bicycles and the motorized cars, but Isaac decided he wasn't leaving without one of those cars. So he laid himself down and threw a holy fit. You could hear him clear across the store. That boy's got lungs.
I was alone with him and his brother for some reason. I hardly ever went by myself with them for many years. But this time I must have had to. Well, he refused to get up so I walked away from him. I said, "good-bye, Isaac, I'm going home." I walked away. People were staring at me. I didn't care. I hoped just one of them would say something. I was so aggravated.
I walked around the corner (thank God Isaiah wasn't throwing a fit) with his brother and waited. And waited. And waited. And waited. This kid could throw a very long fit, so I knew I was in trouble. He doesn't give up. I had a dress on and knew it was going to be a sight when I went to wrestle him out of the store. But, I went back to him and tried to pick him up. He went limp rag doll on me, just as expected, and I couldn't pick him up. (He is big for his age, and can really kick HARD.) So, I started dragging him by the foot aisle by aisle through the store. Boy did I get looks. I was really hoping a security guard would stop me or something -- but no one did! If they had, I would have said, "please help me get him to the car."
Finally we got outside and there was a bake sale going on right there where we are struggling to get to the parking lot. Isaac sees one of those big cement poles they put in front of the store and grabbed it, screaming his fool lungs out. The looks on everyone's faces just struck me as hilarious and I started giggling. I know I must have looked like I was loosing my mind, but there I was giggling, pulling Isaac's hands off the pole, yelling at Isaiah to stay with me, and the more I laughed the weaker I got!
I honestly do not remember how we got to the van. Somehow we did. But I will never forget it. Everytime I think of the look on those prim and proper ladies' faces I laugh. I wish I could describe it.
Needless to say, I have a boatload of compassion for mommies with kids who tantrum in the store! They aren't always just brats -- sometimes there's a disability they are dealing with! With autism affecting 1 in 166 kids (isn't that number staggering?) we'll likely see a lot of tantrums in stores in our lifetime!
Do I punish my children? Absolutely. But there is a time and place for it. Isaac was not able to modulate his emotions enough to be able to reason. He had worked himself into a dither, and it was up to me to help him come back down. When he calmed down is when I addressed his bad behavior. Addressing it in the middle of a "melt-down" would only make it worse. We are not to exasperate our children. We are to lead them. Having wisdom in discipline is so important in order for it to be effective. Otherwise it will be destructive and accomplish nothing. We need to be careful that we don't tantrum ourselves when dealing with our children!
I thank God for those giggles. It was God's grace washing over me like a balm. How very good He is that His mercy endures forever!
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Jun. 26, 2006 - My Favorite Resrouces
I
thought I'd share some of my favorite resources and materials I use for
our cottage school/home school. (I teach my own three boys and a
handful of others at the church everyday.) My own children have
learning issues. My twins have autism and are developmentally delayed
by about three years. So I am very much into modifying and adapating
things for them and for my other special needs students. I have
students who have ADHD, MR and other emotional problems that keep them
out of a typical classroom.
We study in a one-room-school
environment, are classical/Charlotte Mason/Trivium in our approach and
philosophy and it is very easy to teach multiple grade levels using all
the following materials. I have students from Preschool through 10th
grade. Here is what we do and use!
1. Nature notebooking. We do a lot of nature walking and studying
what we find and draw, etc. Every student has a blank sketch pad at
the beginning of the year and we fill it up! I glue a big envelope to
the back inside cover for them to put their finds in and study them
when we get back (things such as leaves, twigs, nuts, etc.) They also
have bug boxes that I got at the dollar store. These have little
magnifying windows in them to look through.
2. Grapevine Bible Studies. (http:// Grapevinestudies.com)
3. Math U See (http://mathusee.com)
4. Art of Eloquence (http://artofeloquence.com)
5. I have used so many different things I love for for English and language. Spelling Power,
Daily Grams,
and Writing Strands,
and this year I'm going to use Institute of Excellence in Writing.
6. Fallacy Detective (for logic). (http://triviumpursuit.com)
7. English from the Roots Up; Rummy Roots.
  
8. Hey Andrew! Teach me Some Greek! (http://greeknstuff.com)
 and Latin
10. KONOS -- I love this program. I have taught it all in the past, but for now I use their ideas but do not follow the curriculum completely.
11.
Empty notebooks for journaling daily. Sometimes I give a topic and
sometimes I don't. Sometimes I give an opening sentence.
12. Empty notebooks for copying quotes from great writers and thinkers and for dictation.
13. I use the SAT vocab list that you can get on to practice vocab.
14. Thomas Kinkaid's art currciulum from Alpha Omega publications.
15. Suzuki violin method.
16. Mystery of History; Timelines; History of the Ages; Notebooking pages (I just ordered an ebook full of great templates), History Scribe (love this program -- my kids wrote their own history text books last year), and I use Story of the World by Susan Bauer as an extra resource.
17. Christian Kids Explore Biology from Bright Ideas Press. This is a really fun program. My kids loved it.
(I pretty much design my own science and history program from "real"
books. For 10th grade this year I think we might look into Switched On School House. I haven't decided yet!)
18. Doorposts -- all their stuff is wonderful.
19. I like everything and anything from Bright Minds.
20. Hold that Thought products
-- we are going to use their ancient history cut outs this year and
their world timeline book is so reasonably price for this year's
timeline.
21. I read out loud a LOT. I read out loud several hours a day--
usually out of two different books. We usually read the classics. I
haven't chosen my classics for this year. What do you recommend for a
read aloud for ancient history? (Historical fiction.) The Henty books
are awesome, and since I have mostly boys in my cottage school, they
work out wonderfully. I also like Nancy Rue's books but they are out
of print now.
We love the Thornton W. Burgess books for nature and Gene Stratton
Porter's books are also my favorites for nature studies here in Indiana
since this is where she lived. I actually live not very far from where
she grew up. We go to the state forest a lot and the kids love
imagining they are in the Limberlost.
I want to be able to afford to give my kids cameras they can use that
take good pictures. I think that's such a great way to notice details
around you.
These are just a few of my favorites. I have so many!
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Jun. 11, 2006 - What Has Worked for Me
1. Doorposts "If Then" chart and all their materials are wonderful for
keeping your family going in the same direction spiritually and makes
it so much easier to keep discipline consistent. http://www.doorposts.net/Default.asp
2. This past year I used a race track and put my children's names on
cars. Then, there was a little enevelope of checkered flags. I also
had a "garage" in the middle of the track and a "pits" to the side. If
my child did something wrong, they got a flag. Next time they got a
flag they went in the garage, and the next time they did something
wrong they got in the pits and had to copy scriptures or write
sentences. I don't spank my autistic children all the time because
they can't make the connection always and it escalates their rage. So
I have found visual reminders like this work well, and they really "get
it." They get very upset about getting a flag on their car. Usually I just have to warn them once about getting a flag if they don't stop a certain behavior! They hate those flags!
3. I have a jar and everytime I have a praise to give someone for a
"job well done" I put a marble in it. When the jar is full we go out
for some kind of special treat -- a movie, or ice cream or pizza or
something like that.
4. The "If Then" chart works wonders, too, and I use this with my neuro-typical children with wonderful success!!
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May. 26, 2006 - New Photos!
Check out the new photos in our photo gallery!
Go to our cottage school website:
http://libertyscholars.com
Click on 2005-2006 Photo Gallery in the side bar.
It will take you to the new albums!
Enjoy!
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Apr. 28, 2006 - Look, Mom!
Only those who have kids with disabilities can fully appreciate what
I'm going to share here. I almost wasn't sure I should, but you
know what, I know I can't be the only one experiencing this!
I would like to know why it is that kids with
cognitive disabilities mature faster physically -- but I know I'm not
alone. A lot of them do.
My twin boys, age 11, have been so excited lately because of a new something that has appeared on their body.
Pubic hair.
Oh my, I am informed as each new hair appears.
They don't miss a thing. They KNOW when they get a new one.
One of them says to his dad, "I been waiting for dis so long." And heaved a big sigh.
It's so hard not to laugh -- they are just so proud!
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Apr. 18, 2006 - Pox Part I
The Age of Autism: Pox -- Part 1
By Dan Olmsted for UPI
http://tinyurl.com/qhcet
Children in families with problematic reactions to chickenpox
virus may be at risk for developing autism if they get that live-virus immunization
too close to other live-virus vaccines, a three-month United Press International
investigation of cases in one northwest U.S. city suggests.
Several such families in the Washington state capital of Olympia watched
their children regress into full-syndrome autism -- losing language and social
skills and adopting repetitive behaviors -- in the months following the shots.
Two children had participated in small clinical trials in Olympia of investigational
Merck & Co. chickenpox vaccines in combination with the live-virus mumps-measles-rubella
vaccine -- the MMR.
Federal health authorities consistently have rejected concerns about
a link between immunizations and autism. But a family background of problems
coping with viruses used in live-virus vaccines has not been considered a
possible risk factor, experts said.
One of the children in the clinical trials, Jimmy Flinton, now 4, got
about 10 times the standard dose of chickenpox vaccine in a shot that also
contained the standard MMR.
Called ProQuad, that combined immunization was approved by the U.S.
Food and Drug Administration last September -- the first time four "attenuated"
or weakened live viruses have been mixed together in a single shot.
The second child, Timothy Baltzley, now 6, got an investigational "process
upgrade" chickenpox shot and a separate MMR shot at the same office visit.
Both children have a parent who had unusual reactions to chickenpox virus.
Four days after the MMR and chickenpox injections he became ill with a fever
and lay limp in his mother's arms for the first time in his life.
Timothy's Baltzley's mother, Kimberly, had chickenpox three times,
the last at age 16, just three years before he was born. Jimmy Flinton's
father, Paul, had shingles as a teenager. Shingles is reactivated chickenpox
virus that painfully inflames nerves and mostly affects older people or those
with weakened immune systems.
Both children got the vaccines at 12 months, the age at which chickenpox
and MMR immunizations are first recommended by the Centers for Disease Control
and Prevention. They were among a total of 101 subjects in the two trials
in Olympia, according to the Western Institutional Review Board, which approved
the trial protocols.
Half-a-dozen other parents of preschool-age autistic children from
the same neighborhood in Olympia recognized a common thread: unusual chickenpox
histories in their families and simultaneous or closely timed chickenpox
and MMR shots in their children.
"It's the proximity of the chickenpox and MMR vaccinations" and the
family histories that stand out, said Denise Rohrbeck, mother of 3-year-old
Grant.
Rohrbeck has not been able to develop immunity to chickenpox despite
being twice vaccinated as an adult, the last time just two years before her
son was born. A couple of months before he got the standard chickenpox and
MMR shots at the same office visit at age 1, Grant had a stubborn and severe
case of roseola, which like chickenpox is a herpesvirus.
Four days after the MMR and chickenpox injections he became ill with
a fever and lay limp in his mother's arms for the first time in his life.
"He began having chronic diarrhea, and by his 15-month checkup he had
regressed so drastically that his pediatrician suggested he could be autistic,"
Rohrback recalled. The doctor agreed to the parents' request for an immediate
neurodevelopmental evaluation, which resulted in a diagnosis of full-syndrome
autism.
Rohbeck said she began looking for a possible connection between vaccines
and autism among neighborhood children after the Thurston County Health Department
did not follow up on parents' concerns raised at a meeting last October.
With the parents' continued involvement, she has now compiled vaccination
records of 14 Olympia children diagnosed with autism, as well as 16 who are
not.
The admittedly unscientific chickenpox-MMR association continues to
be striking, and the two cases following the clinical trials seemed to underscore
it, she said.
A Merck spokeswoman said the company reported those two cases to the
FDA this March -- the same month UPI asked Merck about them.
"We just received these reports in March 2006, six months after ProQuad
was approved in the U.S., and they were sent to the FDA after we received
them," Merck's Christine Fanelle said in a statement. She said Merck received
"the two reports of autism AEs from Olympia -- one from the parent of a child
in the ProQuad trial and one from the parent of a child in (the 'process
upgrade' chickenpox) study."
Parents Jennifer Flinton and Kimberly Baltzley say they never called
Merck and wouldn't know who to contact there; last summer, Jennifer Flinton
reported Jimmy's autism to the federal government's Vaccine Adverse Events
Reporting System, attributing it to the cumulative effects of vaccination.
The federal health employee she spoke to on the phone said she would follow
up by gathering lot numbers and other information on the vaccines.
The parents said their pediatrician, who conducted both of the Merck-funded
trials in Olympia, knew about their children's autism diagnoses within months
of their participation in January 2001 and October 2002.
The Olympia trials were part of wider Merck studies conducted at several
sites in the United States and abroad. Fanelle said Merck would not disclose
information about any other reports of autism.
"We have confirmed your original inquiry on whether we received the
two reports out of Olympia," she said. "We are not going to comment on reports
beyond this.
"There were more than 7,000 children in
our ProQuad trials, 5,800 of whom received ProQuad vaccine," she added.
Diana Sparby of the Western Institutional Review Board in Olympia said
it had not received reports of autism from the local ProQuad study, but she
noted the protocol "was not designed to assess long-term safety, as it called
for follow-up for only 42 days following vaccine administration."
The FDA, which approves drugs after determining they are safe and effective
and monitors reports of side effects after they come on the market, did not
respond to repeated inquiries from UPI about the Olympia cases or parents'
concerns about family chickenpox histories.
Other unusual histories in neighborhood
families with autistic children 6 and under:
-- Another child had roseola 12 weeks before getting his chickenpox and MMR shots;
-- Another father had shingles as a teenager;
-- Another mother had chickenpox as an adult two years before her pregnancy;
-- A mother had chronic cold sores, also a herpesvirus, as a child
that were so severe they had to be treated medically;
In addition, another mother had a case of measles as an adult.
Merck, which manufactures the standard MMR shot and the standalone
Varivax chickenpox shot as well as the experimental vaccines used in the
clinical trials, said repeated studies show no relation between vaccines
and autism.
"We don't see an association," spokeswoman Fanelle said, citing as
confirmation a 2004 report by the widely respected Institute of Medicine,
part of the National Academies. That report rejected a link between autism
and either the MMR vaccine or the mercury-based preservative thimerosal.
The report also urged that research dollars be spent on "more promising"
autism research.
"There will always be some people who
say vaccines cause autism despite the lack of scientific evidence,"
Fanelle said.
In the United States, controversy over a possible link has centered
on thimerosal. Beginning in the late 1980s children were exposed to increasing
amounts of thimerosal, which is half ethyl mercury, as more vaccines were
mandated.
Thimerosal was phased out of routine childhood immunizations -- but
not all flu shots given to children and pregnant women -- beginning in 1999.
Although the Olympia children with autism were born after the phase-out was
recommended, their vaccine records show more than half of them got at least
one shot containing thimerosal during the first year of life. It is possible
all of them did, but incomplete information from manufacturers makes that
uncertain.
Chickenpox and MMR immunizations don't contain thimerosal because the
mercury would inactivate the viruses, but some proponents of a vaccine-autism
link suspect thimerosal exposure from other immunizations could have a potentiating
effect, damaging a child's defenses and paving the way for live viruses to
wreck havoc.
"I'll defend doctors to the end on this point. They are a convenient
front line for those agencies to hide behind -- it's just shameful."
All live-virus vaccines are attenuated -- significantly weakened
based on the theory that this creates immunity without causing the actual
disease or other adverse health consequences. Other vaccines on the U.S.
childhood immunization schedule, including hepatitis B and the polio shot,
contain killed or so-called inactivated viruses. Live polio virus was dropped
in 2000 after health authorities determined it was actually causing polio
in a small number of cases.
Despite the Olympia parents' concern, none points an accusing finger at doctors.
"I worry about pediatricians being vilified," said Rohrbeck. "We vaccinated
our son because we shared their faith that vaccines were safe.
"If it turns out that some vaccines are not safe for all children and
that these hazards could have been found with more rigorous testing -- or
worse, that the dangers were already known -- that's the fault of the CDC,
the FDA and the manufacturers," she said.
"I'll defend doctors to the end on this point. They are a convenient
front line for those agencies to hide behind -- it's just shameful."
The theory that live virus immunizations could trigger autism first
arose in 1998 in Britain, when gastroenterologist Dr. Andrew Wakefield published
a paper suggesting a possible association between childhood MMR immunization,
bowel disease and regressive autism.
"It's actually heartbreaking, listening to these parents, because
you're staring into an abyss," Wakefield said.
The premise: Interaction between viruses -- a well-known phenomenon
scientifically known as immune interference -- could depress a susceptible
child's immune system, lead to persistent infection by the measles virus
in the GI tract and possibly the nervous system itself, and trigger autism-inducing
brain damage. While the case has not been proven, it gains plausibility from
the fact that naturally occurring measles infection is known to cause delayed
brain damage in a small percentage of children, proponents of the theory
say.
Wakefield's study, and his plea in Britain to separate the component
measles, mumps and rubella (German measles) vaccines and administer them
a year apart to reduce possible risk, caused an uproar. Co-authors subsequently
repudiated part of the paper, conflict-of-interest allegations emerged, and
the prestigious Lancet, which originally published the study, issued a statement
calling it "fatally flawed."
Wakefield was asked to leave his medical
job in Britain and is now doing research in Austin, Texas.
After the Olympia cases were described to him by UPI in March, Wakefield
met with several of those parents at an autism conference in Portland, Ore.
He also read studies Merck cites as central to the FDA approval of ProQuad.
"It's actually heartbreaking, listening to these parents, because you're
staring into an abyss," Wakefield said afterwards. "You're listening to stories
which reflect the fundamental misconception of vaccine manufacturers of what
viruses are and what they do. The whole perception of these people is dangerously
na?ve."
In contrast to the United States, British health authorities have not
recommended chickenpox immunization. But an MMR-chickenpox shot was under
discussion there at one point, and Wakefield said he warned its developers
that putting four live viruses in one shot was a bad idea.
He says the Olympia cases show why.
"As far as I'm concerned, you are further increasing the likelihood
of persistent infection and delayed disease, which they are never looking
for and therefore they will never find if it does occur, as it did clearly
in a relatively short space of time with some of these children, and it's
never ascribed to an adverse reaction to the vaccine."
On its Web site, the CDC says such
concerns -- and Wakefield's studies in particular -- are not based on
good science.
"Current scientific evidence does not support the hypothesis that MMR
vaccine, or any combination of vaccines, causes the development of autism,
including regressive forms of autism," the CDC says.
"The existing studies that suggest a causal relationship between MMR
vaccine and autism have generated media attention. However, these studies
have significant weaknesses and are far outweighed by epidemiological studies
... that have consistently failed to show a causal relationship between MMR
vaccine and autism."
http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-mmr.htm
Dr. Jeff Bradstreet, a family practitioner in Florida who treats
3,000 autistic children and has worked with Wakefield, said he believes the
risk of autism rises the earlier and closertogether that live-virus vaccines
are administered. He warned the Institute of Medicine in 2004 that it was
ignoring the possibility that younger children are more vulnerable because
their immune and neurological systems are immature.
"There's definitely been an association of kids getting MMR at 12 months
and crashing (becoming autistic)," Bradstreet said.
He said adding 10 times the standard dose of chickenpox virus, called
varicella-zoster, to the MMR shot and administering it to 1-year-olds is
playing with fire.
"We think putting varicella with MMR is just nuts."
British researcher Paul Shattock sees another reason to be concerned
with combining the four viruses: He suspects that children who get wild --
or naturally occurring -- chickenpox too close in time to the MMR shot face
a higher risk for autism. That's scenario parallels the one Olympia parents
noticed with the chickenpox vaccination.
Shattock, director of the Autism Research Unit in the School of Sciences
at the University of Sunderland, said he noticed that autistic British children
whose parents blame the MMR for triggering the disorder had a pattern of
"undisclosed viral illness" around the time of the shot.
He studied the records of 100 of those children, compared to 100 children
whose parents did not cite the MMR as the trigger, to see if there was a
higher incidence of chickenpox cases three months before or after the MMR
immunization.
"Now, there was," Shattock said in an interview while attending an
autism conference this month in Washington, D.C. "It wasn't statistically
significant at the 95 percent level -- but enough to make you think that
if it was a huge study, it might be."
"There's no doubt the immune response to viruses is determined by our
genetic constitution," Wakefield said. "It may well be there is a genetically
determined predisposition to abnormal handling of chickenpox virus, at least
in children.
His concern about adding chickenpox to the MMR shot: "I'm worried about
it because of the interference of the vaccines, mainly because it depresses
the immune system by yet another mechanism."
A Merck scientist discussed that issue at a CDC meeting in 2004, the
year before ProQuad was approved, according to agency minutes. Dr. Florian
Schodel "confirmed the possibility" that the chickenpox virus component of
ProQuad was "causing a local immune suppression and an increase in measles
virus replication. ...
"The current hypothesis is that the varicella and measles virus are
co-infecting the same or proximate areas of the body and engaging in a specific
interaction, but how that works is as yet unknown."
He said the interference appeared to involve only the chickenpox and
measles viruses -- "there is no such effect for the mumps or rubella vaccines
administered locally at the same time."
At the same meeting, Merck's Dr. Barbara Keller said the amount of
chickenpox virus in ProQuad is "about a log" -- or 10 times -- higher than
Merck's standalone chickenpox vaccine, Varivax, in order to overcome immune
interference.
Both Wakefield and Shattock said the Olympia families' unusual histories
with chickenpox are worrisome because their children might have inherited
problems coping with the vaccine.
"There's no doubt the immune response to viruses is determined by our
genetic constitution," Wakefield said. "It may well be there is a genetically
determined predisposition to abnormal handling of chickenpox virus, at least
in children.
"This kind of phenomenon has been shown to (play a role in) measles.
The immune response to measles is determined by your genetic profile. It's
certainly consistent with what is known about the immune response to viruses."
ProQuad is likely to be widely adopted by healthcare professionals
who previously administered separate MMR and Varivax shots.
"Use of licensed combination vaccines, such as (ProQuad), is preferred
to separate injection of their equivalent component vaccines," says the new
edition of the CDC's authoritative "Pink Book" on vaccine-preventable diseases.
"When used, (the immunization) should be administered on or after the
first birthday, preferably as soon as the child becomes eligible for vaccination."
This series of articles, based on reporting in Olympia in February
and March, tells the families' stories, looks at the scientific controversy
and examines implications for the autism-vaccine debate.
-- Next: "He has gone backward mentally ..."
-- E-mail: dolmsted@upi.com
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About Me
I have 5 children and three grandchildren. My oldest two children are married with children of their own. My youngest three are still at home. My middle child is 15 has bipolar, semantic-pragmatic disorder, hypothyroidism, adhd, dyslexia, giftedness and other issues. My youngest children, twins, are 11 and have autism, mental retardation, communication disorder, and all the behaviors that go with those lovely diagnoses!
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