Sunday, July 30, 2006
1011 people took the time to look at my profile!!!
Now if that isn't a good reason to celebrate with ice cream I do not know what is :o)
Now if only I could reach #1 in the stats in our ring, SD will get a big steak dinner and I will enjoy some King Crab. I think he will be waiting a Loooooooong time! lol There are some big shoes to fill that far up the stats.
Death.... peanut butter (hands weighing)......Death?..... peanut butter?...DEATH?...peanut butter?.
I think I could consider that a challenge in life.
A peanut allergy is considered a disability under the Americans with Disabilties Act.
All right. I'm finally letting it go.....
Saturday, July 29, 2006
At least not now. Not today or this year.
I can't fight the fight.
Not while my child is left in the arms of the ignorant and
uneducated, overworked and uncaring staff at the public school he would attend.
I can't be "the one" to make a change in our district.
It is a title too weighted by circumstance, timing and dumb luck.
Not at my child's expense.
Kindergarten will be the year that we approach our district again.
I will be much wiser.
Gabe will officially be in his "home school" and the team of people we will be working with will be different.
New school, new teacher, new speech, new OT, new PT. If we're lucky, new director of special education (early retirement, job change???)
A smudged, yet cleared slate for our district and us to try again.
We just have devoted the last year unequivocally to Gabe.
I can not and will not enable their "program" to create an atmosphere for regression.
Sleepless nights that lead into pavement pounding days have provided new light and possibilities outside of our district for preschool.
My anxiety seems to be lifting.
We still have to notify our district of our decision and get our ducks in a row at his new school.
The cost is only a little more than a regular preschool.
We have decided to continue ABA therapy at home mostly by me and an occasional therapist.
We also decided to pull him from the current ABA school after this semester ends.
It is just too difficult to make the best decisions for Gabe while you are under someone's thumb (SD's parent's have felt more comfortable with sharing their, not so positive and often argumentative,opinions about our choices for Gabe).
Just some paperwork paired with fresh ideas and our outlook and future for Gabe seems brighter.
The day that he goes to his new preschool now brings images of standing by the planter outside for his first day of school picture, lunchbox in hand and a smile on my face.
Monday, July 24, 2006
"No," he laughs.
I smiled, somewhat relieved.
But then, how am I always in these kind of situations?
Am I letting myself be a victim?
To poorly quote Dr. Phil, "What are you getting out of acting like a victim, because you always seem to be one?"
Am I, that is, a self appointed victim?
I need to let more roll off my back.
It's hard when comments are made about or against your child's circumstances.
I just stand there and let the words smack against my face.
The bruises turn a deep purple the following day and the anger festers, twisting in my stomach and my mind can't stop obsessing.
"Should I email her? Let her know that what she said really hurt me? And Boo?
I look at SD. I'm already forming the letter in my mind.
"No, I don't think that would be a good idea." He sees my angst. I know he just wants to help me get past this.
"Do you want me to rub your back?" It'll help get your mind off things."
"Ok. Thanks," I sigh trying to relax.
As I lay there I imagine our Christmas tree lined with stuffed animals around the bottom, presents stacked with shiny bows, gingerbread houses overflowing with freshly licked candy and the smiles on my children's faces as they wonder what Santa will bring this year.
That is my version of anger management.
Sunday, July 23, 2006
And I did that today, earlier, and my mind was free to enjoy the evening walk with SD and the kids. We admired the large powder puff clouds mingling around the vivid blue sky. Breath taking. Thank you God for another beautiful day.
Midway through our walk, I see someone that I have attempted to meet more than once, only to have short, abbreviated conversations with. She is on the committee of our Moms Club chapter, a real go getter. Gotta love those people, I relish their energy and enthusiasm. I couldn't wait any longer to spark up more than a few minute conversation. It had been 6 months of waving to each other as I drove by her house everyday, Gabe asleep in the car after school, unable to stop and chat. Here was my chance. She was outside with her little girl and husband. We talked about our garage sale we had this past weekend (It went well, thanks for asking :o) and some of the outfits of Boo that had been passed on to another cutie, her daughter. The conversation felt good, easy, flowed nicely. On to school in the fall, where are our kids going. I mentioned that Boo would not be attending the public school in our neighborhood, but another one a few miles away. She went on to say that we probably saved ourselves a lot of hassle, that most people will not be going to our neighborhood school. Our elementary school is a Blue Ribbon school and is rated very highly in Michigan.
"Really?" I was surprised.
"Yeah," she rolls her eyes, "Peanuts are not allowed in school anymore."
SD and I have always talked about inventing a machine that could instantly beam you anywhere, similar to Star Trek. This was a time that it really would have come in handy. Either she would have to go or I.
"Your kids have peanut allergies, right?" She waved her hand towards them.
I stood there stunned by her blatant ignorance.
"Well, anyway," she continues, ignoring the look on my face, "Why should 500 students suffer for one child?"
"What if my kids eat peanut butter in the morning? We eat peanut butter all the time, then what are we supposed to do?"
"It's airborne too, the allergy that is.....Why should we have to change." She ended with total conviction.
I could only say this without ripping her head off, "Wow, I feel for that mom."
This woman is on a committee for a MOM's club. And she ranted in front of my daughter who is four and anaphylactic to peanuts. She fell (Actually kicked with great force) right off my People That Matter In The World list.
Here's my two cents on peanut butter consumption and children...
1. If you believe that peanut butter is such an important part of your child's diet, you need to see a nutrionist.
2. A child spends , on average, 7 hours in school a day. That leaves 17 hours outside of school to totally glutton themselves of peanut butter. Let's even give them 8 hours of rest each night, it still leaves a child 9 hours to eat as much peanut butter outside of school that they want.
3. If you think that eating peanut butter is more important than saving a child's life well....Your morals are in disarray!!!!!
4. This is a great opportunity to teach your children about compassion, adaptability and being a responsible person in the community.
5. And last, but most importantly, you will kill my child if she is near peanut butter.
Shouldn't that be enough? You'd think.
I had to then spend part of our special time before bed with Boo trying to explain why (the mean bitchy woman) the lady we talked to was talking about peanuts so much and why she was so angry. I hated telling her that some people do not understand how important it is that she not be by ANY peanuts. Some people do not get it, and she, sadly, was one of them. Her look was a look of rejection. Like she had been rejected. Oh I wanted to go over to that woman's house and rip her head off and shove peanut butter down it.
Would that be enough? Enough for me to let go of this hurt and anger? You'd think.
During our meeting, we discussed some things that lead me to believe Gabe could be Autistic. After taking it all in, she began to play with Gabe. He was pretty easy to engage and they both looked like they were having fun. She also explained Floortime and gave me materials that described how to incorporate and utilize it through play. She agreed that he was probably on the spectrum, but he also had a lot going for him, especially in the social department. This teacher was the first person to hint that there was a bright future, or any future for that matter, for Gabe. When our meeting ended, she offered to show us one of their preschool special ed classrooms. It was the first time I saw a PECS schedule.
Then I thought yesterday, almost 1 1/2 years later, why couldn't Gabe go to the school with the amazing teacher we met? They have an open school policy in SD's district. But, does it pertain to special education students? How would picking up and droping off Boo work when she was on the other side of our county about 35-45 minutes away? Could this be the answer I needed? Could this be a possible solution? Or am I just postponing the inevitable of Gabe returning to our district?
SD is going to look into it this coming week. I need to know that we have choices. I hate feeling as if I'm stuck. Stuck in something I can't get out of. Having options just makes the sky seem a little clearer.
Thursday, July 20, 2006
Only a month left and thoughts of Gabe in our public school system create twists and turns in my stomach. It is in the dark corners, waiting, just waiting to take my child and do with him whatever pleases them. At least that's how I feel. What's baffles me still, is that it didn't start that way. I was way too trusting in the beginning. I handed over my beautiful boy with hopes that they would help me, that the public school system would see Gabe as the amazing and wonderful child that he is. I gave document after document, files and files about him, trying to help in anyway I could. I just wanted to make things as easy for them and Gabe. You know where those files are? All those confidential and extremely personal files ? They have been thrown in a folder that is also filed away, never read, never used to help Gabe.
My husband says we need to keep the communication open between the school and ourselves, that it will benefit everyone, especially Gabe, if we work with the system.
THE SYSTEM SCREWED ME AND GABE!
BUT, ......I know he's right.
I just don't know if I can do this.
What if the teacher is mean to Gabe? (Oh, he's the boy with the aggressive and persistent mother..... He's soooooo special. I can't help your child, because I have to help Gabe.....sneer)
I've never left Gabe with someone I didn't trust.
And I don't trust his teacher and I especially don't trust the public school system.
His first day of preschool is supposed to be a monumental occasion with pictures, smiles, tears and hugs. A switching of the guards. I feel like I will be instead throwing him off a cliff.
Today I have decided to hand it over to God for a few more weeks and then I will start researching alternatives. Although, I do not think that the schools around us have open enrollment.
I need a different picture to look at, because this one is too muddied.
Monday, July 17, 2006
-Increase in perseveration (especially with his voice)
-reacting more emotionally
-More babbling "Gabey Language"
-Inconsistency with Language (Four word sentences mixed with two word)
I think Gabe is noticing more of the world lately. I can see it in his eyes. He is seeing more than he ever has. He is more aware, more in tune. I wasn't sure what to think when his perseverations increased, but this morning it all came together....at the car wash of all places and over a sundae.
I must say that our car wash is pretty cool in our town. They have a huge waterfall and fountain that you drive around before entering. In the winter they have plastic life like penguins all over the rocks around the waterfall. Those same penguins have Santa hats around Christmas, pumpkins at Halloween...you get the picture. My kids love it! Gabe has started requesting that we have car washes every week. Sometimes we go, but mostly I say "maybe next week."
"This way," Points to the car wash.
"Do you think we should get a our car washed?" I ask.
"YES!!!!" He says with enthusiasm."Car wash!" "Yes!"
"Ok, today is a good day. Let's go!"
"Yeah!" Gabe claps from the back seat.
Today,we drove around the back, oohed and ahhed over the waterfall, handed over the money and begin our car wash journey. First, they sprayed our car with a very strong sprayer. "Look Gabe! They're getting all the dirt off. Our car will be so nice and shiny when we're done." I must admit, I get excited too. I love the look of shiny paint on cars.
Gabe has always looked a bit hesitant when going through the car wash. most of the time I hold his hand and explain what's happening as it happens.
"The sprayer gets all the soap off, like rain. See?"
It seems to ease and relax him. Today was another story.
I made a connection with Gabe today. A deep, profound connection. He was very tense, more than usual, as we went through the washing cycles, I held his hand and explained everything like I normally do, but his reaction to the change in noise, machines diving back and forth from the car made his body very rigid in his car seat. His eyes looked right at me with incredible intensity that left me breathless. He was looking at me like the boy in the snow had. I was seeing Gabe. A part of him that is so often masked by Autism.
His day went well, mastering quite a few more programs. Speech with Dr. Karen also went well, with Gabe working on "Who" questions. He understands "Where" and "What", "Who" seems to be taking a little longer. Before going back to his therapists room, we successfully sat on the potty (in a public place!) without any problems. It seemed almost commonplace. We are adding "after lunch" as a time to visit the potty now. Around 2:00 he fell asleep in the car, and after getting home, slept until 4:30.
Gabe hasn't been too interested in dinner lately, so we have implemented a few rules that also apply to Boo.
1. They Must finish their dinner in order to get "Special Treat" (small vanilla cup of ice cream, topped with sprinkles and two Swedish fish) Dinner portions are small, therefore making it pretty easy to attain the treat :O)
2. Appropriate dinner behavior (Varies due to age) Gabe mostly needs to sit in his chair, facing forward and help say Grace. Boo has to say grace, sit in chair appropriately, and be courteous.
Gabe made it through most of his dinner, but then started to vocally perseverate and turned around in his chair. We asked for him to turn around, a few times, and reminded him that he has to finish his dinner to get special treat. He refused to turn around, so we excused him from the table. He seemed OK with our decision, left the table and played. It wasn't until Boo finished, started doing the "Happy Ice Cream Dance", ice cream cup came out, sprinkles and Swedish Fish that Gabe came and sat at the table.
"Ice Cream Cone?" He was ready for dessert.
"No Gabe. You didn't finish your dinner. Maybe tomorrow after dinner." I said
Normally we would get a small whimper before Gabe admitted defeat to go play in the other room with his trains. Not today. Today was different. He broke out in tears, that rolled over his plump adorable cheeks and hands covering his eyes as he rested his elbows on the table. This wasn't your average repetitive whimper. This was a blown out, three year old, I'm going to die without ice cream cry.
"PLEEEEEASE MOMMY" with such a look of torment. Huge tears with such desperation in his voice. He has never showed such a desire for something, especially not verbally.
It broke my heart, but I said no. Maybe tomorrow. He sat staring at Boo's desert towering with candy. I waited a minute or two to let it sink in and then asked him if he wanted a hug. When I picked him up, he squeezed me tightly between his legs, something he rarely does. I hugged him as he sniffled, kissed his forehead, and rubbed his head.
I hated being the one to deny ice cream of all things.
My little boy is beginning to really notice what is going around him. Not just physically, but emotionally. I hope it doesn't get too overwhelming for him.
Saturday, July 15, 2006
Gabe has many of the "readiness signs", but two important ones. He does not tell you when he has to go/does not fully realize when he is going and he frequently urinates- very frequently. He does not know how to fully empty his bladder at one sitting. A child should be able to remain dry for an hour or two at a time. Gabe can go maybe 10 minutes. His ABA school had taken data about a month ago, which showed he urinated twice/sometimes three times an hour. I just thought, maybe, if we practiced his bladder would adjust. He's just not developmentally there. I could buy the whole alarm when you pee contraption, but I do not think we're at that point yet. I'm OK with the "let's wait and see what happens."
We did see many great "signs of readiness", he is able to sit for a few minutes to wait to go potty, he did not have any problems with a BM (in the toilet I might add :o), he enjoys the whole potty routine before and afterwards, the Nemo underwear was not an issue, and he seems to understand the whole purpose of the bathroom. What a wonderful discovery session we had today.
I feel good about trying to potty train Gabe. Now I know, we tried, he's not ready, we'll try later. We're thinking when he is 3 1/2 in November. We picked this new time, because it gives him time to adjust to all the changes that happen in the beginning of the new school year. It gives us time to adapt to how our public school system is going to fit into Gabe's life, SD going back to work and just juggling everyone's schedules for awhile.
I feel that we became an even closer family today. We pulled together, worked towards achieving a certain goal and then embraced each other when the plans changed. How awesome are we? :o)
Friday, July 14, 2006
1. Nemo underwear (Check!)
3. Timer (Check) (initially set for 20 minute increments)
4. Data sheet (Check)(keep track of prompting and independence)
5. Swedish Fish (Yum! and Check) Reinforcer for sitting on potty
7. Picture Schedule of what to do in bathroom courtesy of Charmin Toilet Paper and their mascot,Bear (Check) Gabe knows all the steps already, but I thought the pictures would be a good reminder.
8. TV tray (Check) (Something to play /eat/drink on while we wait for something to happen-Please God let it happen!)
9. TV/VCR with small table(check) (To play the endless Barney videos)
11. Matchbox Cars (Check)(Ditto)
12. Suckers(Check) (Ditto) He gets to choose one thing from a large dish filled with suckers, matchbox cars and Brio trains for pee and poop only. (The stakes are high here people!) We also bought a matchbox car track to play with in between the time he goes and we are waiting the 20 minutes.
13. Veterinarian Barbie (Check)(For Boo for being such a great sister and cheerleader for Gabe)
LET THE POTTY TRAINING BEGIN!!!!!!!!!!
(Sound of horns blaring, crowd cheering, mother fainting)
Thursday, July 13, 2006
About two weeks ago, we started noticing a lot of repetitive behavior (perseverating) by Gabe. It began with him shaking his head back and forth, letting his vocal cords resonate with each passing. Boo, my daughter, sometimes would follow, imitating him, laughing.
"Ok. Ok. You both need to stop shaking your heads or you're going to get too dizzy!" I would laugh.
Boo stopped, but Gabe would continue, never slowing down until a few minutes later. He seemed "hooked" on the sensation of getting dizzy or maybe the sound of his voice and the rapid movement. I shrugged it off. Thinking Gabe was just exploring new things, just happened to be with his head that particular day.
But, the next day it happened, and the next. Now, it seems to slip into our daily routine a few times a day. I try redirecting without drawing attention to what he is doing with his head. It goes like this,
"Gabe, touch your head!"(He touches his head)
"Great Job! Where's your toes?" (Points to toes)
"Are those your piggies? "(Tickle, tickle, smile, giggle)
Half the time he does not continue shaking his head, but instead decides to look at a book I may have handed him or another toy. However, it is the times that he goes right back to shaking his head where I want to just give him a big hug so he can't shake his head. If I redirect with more than a few questions, that in it's self becomes "unnatural".
A few months ago he began the fun, and never tiring running in a circle. At first, I thought he was just running around like kids do, but it didn't seem to expand into anything more than just running around in the same circle. There wasn't a "Look mom! I jumped over a car! Or, maybe I'll slide down the slide once during my travels. Just around and around. He is having fun. Big smiles and laughter. The repetition looks very OCD. (I have OCD, so spotting it comes easily to me for obvious reasons)
Another behavior emerged in Chicago and that was to lick his hand. He did that for about three days, off and on. He has recently stopped for the last four days. I would give him something to drink that had a straw and that seemed to really help.
He also rediscovered his love of button pushing in an aquarium we visted.
I'm listening to Gabe singing his ABC's as 123's in his bedroom. SD tucked him in over an hour ago. Normally he is passed out cold by now. I don't think I will ever tire of listening to him talk and sing.
*Ok, back to what I was saying...*
His behavior and language have been off this past week and a half. He has resorted to more "Gabey Language", but then turns around and says, "Need Chair," picks up chair and heads to the bookshelf. "Why do you need a chair Gabe?" I say. "Get Train." He POINTS!!!! "Do you want to PLAY with the train?" I model with a smile. "YES!" "Gabe, say PLAY WITH TRAIN." Jumping up and down, "Play with train!" High pitch squeal of delight.
Total interactive conversation.
One minute it's "A dubbadiggadooeydunbba" to "Want chair... play train....Yeah!"
We're working on his tone. He can imitate a lower tone, but his "natural" voice that he uses is a little high and soft. If he wants to talk louder, he just gets shriller. It's as if he can't really hear or control his voice. He responds with and utilizes the tone that is being used around him. If women are around him, he speaks higher, around SD -lower, by himself -a little high, not quite to my pitch though.
I wonder if something new is about to emerge with Gabe. I find that his perseverating is the first sign of growth, especially in the use and understanding of language.
Wednesday, July 05, 2006
"Stand up for what is right, even if you’re standing alone."
from the blog Parents Grove
Shivers down my spine. A good quote can be the spark the ignites the passion that is within us.
Pam Vivian writes on her son's views of Autism and her own personal journey. Although she has only three posts, I am looking forward to reading more about her son Ben.
Monday, July 03, 2006
I've been wondering lately if my path for Gabe is going in the wrong direction. ABA, structured social interactions with guidance, a food program and public school were all the "crumbs" I had carefully laid down for Gabe. All the "right" steps were being taken. We were on our way. I even had a map in my basket in case we got lost.
The last few days have opened my eyes to see so much more than the path I had meticulously followed. I began to notice the wild flowers that bloomed along the twists and turns, the sunlight peaking through the trees, rush of the wind that tousled my hair. All the wonderful things that you can not plan for in life. "Happy incidents". Am I preventing these spontaneous adventures from occurring by being so vigilant? Is Gabe missing what's so beautifully displayed before our eyes as we walk along? I see now that he is.
There is so much more to Gabe's growth as a person than what the medical community can offer. They are only a supplement to what he should be doing as a young child. How can you "act" like a three year old if you are never allowed the time to be one. So, we have been exploring the world as a three year old would. Not as a child with Autism, but only as an incredibly creative and inquisitive child. No generalization, no manding, no nothing. Just being a three year old. We still hit on Gabe's ABA programs, but only in the off time we are not exploring. Only when we need to continue on our path, bouquet of flowers in hand.
It has been so wonderful to see him laugh and smile as a three year old should.