Jeannie Davide-Rivera will be present at Pacing for Pieces, an Autism Run held in Florence, SC on Saturday, March 8, 2014 @ 8 am. She will be attending the event with her husband Mark, and four sons, three of which are on the autism spectrum.
Bring your copy of Twirling Naked in the Streets and No One Noticed; Growing Up With Undiagnosed Autism and have it signed by the author.
Don’t have your own copy yet? Books will be available for purchase at her author’s table.
The cost for a paperback copy of Twirling is
$12.99$10.00 for the duration of the event.
Come by and participate in this great run for Autism, bring your family, grab a book, or just come by and say, “Hi!”
For more information about Pacing for Piecing visit their website at: http://www.pacingforpieces.com/
A few weeks ago (or has it been longer–time gets away from me often) I told you that I was going to be interviewed on Twitter via a Tweetchat (first time using a Tweet Chat). The interview is highlighted on Medivizor, which was voted one of the Top 10 Health Blogs in 2013.
Jeannie’s husband turned to her and said “That is you!” pointing at the main character of the book The Girl with the Dragon Tattoo. That character, Lisbeth, has Asperger’s Syndrome.
They do what they SEE you do! A quick note and small example I wanted to share with you. Since I decided to become a writer (Yes—that is how it happened, I just plain-old decided one day, and then did it. I think this is very much an Aspie thing.), my oldest son starting writing his own book. He is working on a story that he wants to then illustrate into animae. I always knew that anything I do Aspie Teen emulates in these ways. Any time I start a business, he does as well, and writing is no different. It is very important what I decide to do with my time with the boys watching so closely.
Yesterday the little man (9) asked if he can use my computer. They all like using my computer even though they have their own. I thought he wanted to go on there and look at video games or look up toys on Amazon (see I shop on Amazon so they look for everything on Amazon). I was wrong. He asked me to help him pull up Microsoft Word so he can write his book! How awesome is that?
The little man told me that in school (during resource room time) he decided to write a chapter book. What a great way to spend his “free time!”
Well I was intensely focused on my crazy bathroom project that I have going on and didn’t pay him too much attention beyond getting the program started. This morning I walked to my computer and found this in an open Word document…..
“Sonic V.S. Mega Man
Chapter1 Mega Man. Mega Man is a old classic teenage boy. People wonder is this the hero they have all been waiting for this whole time? Mega Man has blue armor and a blast cannon.
Mega Mans arch enemy is DR.Gero.
Sonic is a blue hedgehog that can run about 720mi an hour with his super speed. He may be small but he is 16. Sonic is also a teenage hero.
Sonic’s arch enemy is DR.EggMan.
Chapter3 The Fight Is On”
I can’t wait to see what he puts in Chapter 3!
THIS is how special interests can take over our lives, and over shadowing everything else we need to do! I have been extraordinarily quiet lately because HGTV is ruining my life. I watch it obsessively because I love love love houses, real estate, and space transformations—so much so that I have re-painted my kitchen three times in the past month! (More on THAT later)
The past few weeks I have been very stressed because my living quarters are shrinking. We accumulate a lot of crap and clutter, which I am in the process of getting rid of but will take a long time. We have a three bedroom townhouse, which although not small, it is not really big enough for four active ASD boys AND ME! My sensitivities seem to be getting worse and I have difficulty finding a place to decompress. Plus I desperately need outdoor space, a yard etc. My solution: Sell this place and MOVE. But since that isn’t really an option right now I need to figure out a way that I can live here in this house more comfortably, or at least feel happier.
I spend almost all of my time in the house. I don’t get out much, and so it is vitally important for me to make this space work better. A few weeks ago while researching the Psychology of Color for a series I was writing for answers.com, I came across Feng Shui! The best definition I have found is that it is the study of the effect the environment (your surroundings) have on people. My surrounds affect me profoundly—all time. So now I am on my fourth Feng Shui book in the past week, and since I am addicted to the show “Addicted to Rehab” on HGTV, I am in full reno/change everything in my house swing! (Poor Hubby)
So everything sounds pretty cool, doesn’t it? I have changed the color of my kitchen four times. It started out a neutral tan (yuck) and I changed it my standard RED. I love love love RED! My kitchen is always red. Then my kitchen was aggravating me, dirty, cluttery, small, so I thought let me try something new. It was very difficult but I painted over my red and made it blue. I figured blue is a CALM color, and it is, but I hated it in my kitchen. It just made me not want to be in there at all. So guess what? The kitchen is back to being RED! I was going to include a picture here but it looks like a bomb went off in there at the moment so if I ever get it cleaned up I will add a picture.
So what does all this have to do with special interests? My color/Feng Shui/ Reno kick here has taken over my life. I was so involved last night (ok all week) that I have been obsessively working in the master bathroom to transform it. (Hubby called me a slave-driver last night!)
Here is the thing though…I didn’t finish my last paper for Literary Theory class that was due at midnight last night and now the class is over so no A for me this term! I get obsessed with keeping straight A’s as well. But—I COULD NOT stop my project. I could not pull myself away, and everything and everyone suffers for it. Thank goodness I have a 6 month old (today, by the way—can’t believe he is 6 months old already) who bellows at me regularly or I would not come out of my tiny bathroom space at all—not until it was done.
I wish I could give you some great advice on how to temper these interests, and regain some sort of balance, but I cannot—not yet. This semester I am taking two classes instead of one because I am a crazy person. I took a semester off when I had the baby in September and need to make up a class to stay on track, but now I am worried. I had to force myself to back away from the projects (I have many going on at the same time) and write this post.
Stay tuned for progress reports.
The Tot has three days to prepare to start school on Monday, so I thought it would be good to start preparing him. I figured that I can start talking to him over the next few days, and trying to get him used to the idea. At the very least, it wouldn’t be a complete surprise; I should have known better; I should have seen this coming!
Tot had his head on the pillow in bed next to me when I started telling him that in a few days he is going to get go to school with the Little Man.
“You are going to get to go to Big Boy School.”
The Tot looked at my blankly, so I was not sure what his reaction was going to be. I used the word school, to which the tot usually starts him whining, “I don’t want school.” He didn’t say anything so I continued.
“You can go to the same school as brother, do you want to do that?”
“When its time to go the big boy school, you will go with brother on the school bus.”
A few moments passed as he was looking at me fairly expressionless. Then he let go of his sippy cup with one hand and give me a thumbs up sign!! I didn’t even know he knew what thumbs up meant.
I SHOULD HAVE SEE THIS COMING
A big smile spread across the Tot’s face, he jumped out of bed and yelled, “Yay! I want to go on the bus. I need my book bag.” FULL SENTENCES!!! He went to the window, pushed the curtain aside, and screamed. “I want the bus.”
He thought there would be a bus waiting for him outside our house right NOW. I tried to explain (what was I thinking—I wasn’t apparently) that it in three more days. He insisted he wanted the bus.
“You can’t get on the bus now, its nigh time”
“The sun is asleep?”
“Yes, Baby the sun is sleeping.”
“No,” the Tot started screaming, “I want the bus. I want sun to wake up!”
It’s going to be a long three days. But if he stays this happy and excited to go and actually gets on that bus without throwing a fit, I will be happy.
Many of you know that I have been having trouble deciding whether or not to change the little man’s (9) school. Well the decision has been made, and I am feeling really good about it!
Little Man started by shooting some hoops in the gym; gym received a thumbs up! Then we moved on to the library (his favorite place in the world), and he exclaimed that they had, “the best library ever,” and told them that their library/medial room teacher that their library was “approved, but they got a negative on school uniforms.” I guess he was weighting his pros and cons—he’s a funny kid.
We made a visit to the resource (special education) room, which promptly met his approval after trying out their trampoline. He inspected the playground for recess, watched the kids in the halls, peeked into the cafeteria, and stopped by where his brother (Tantrum Tot (3) will be going to class. We also touring the fourth grade classrooms, meeting the teachers. It was a great visit and little man proclaimed that the whole school gets a “thumbs up” and he wanted to start immediately.
I was still uncertain about the move because the school is clear across town (about 20 minutes in the car), and I was worried about logistics. Now that the Tot will be going to that school (because that is where the autism program is located), Little Man will be able to ride the bus with his brother everyday, and they are BOTH very excited about that!
TODAY’S IEP MEETING
Directly following the Tot’s IEP meeting today we had another IEP meeting (in the new school) for Little Man. They addressed ALL of my concerns. We either received or had addressed to our satisfaction, everything I asked for in the long list I posted here. These changes/additions and transportation were added to his IEP.
I happy to report the GOOD NEWS today, as I feel like many times when things go well I don’t say much, but can really get to writing when things go askew.
We went shopping for school uniforms with a very excited Little Man this afternoon after telling him he was starting his new school with his brother on Monday. (I am very happy about the two of them in uniform—nothing fancy just khakis and polos.)
Quick Recap: Tot and Little Man start Monday and will ride the bus together. (The bus comes to pick them up at 7 in the morning, which is a half hour LATER than the regular bus would have picked them up for their zoned school meaning no extra hours added to the school day due to transportation). New school does NOT have silent lunch! The children can talk at lunch, AND in the hallways. Recess everyday, which CANNOT (in the IEP) be taken away.
Oh, I almost forgot—in his current school he has to change classrooms for different classes, this new one does not start changing classes until the sixth grade. That alone makes many issues, now non-issues.
After our meeting today, and the changes that were made, and most importantly the helpful attitude of the staff, I am feel really great about our decision. And—Little Man is really looking forward to Monday!
For past few weeks the Tot has been evaluated by the school district for eligibility for special education services. If eligible he would be entitled to services starting on his third birthday, which was this past Monday.
His evaluation was completed on Monday (it was a little behind because of the inclement weather and snow days). Hubby received a phone call yesterday informing us that he was eligible for services. Today, we had our IEP meeting. (They wasted no time!)
First I want to say that I sat through his cognitive abilities evaluation a few weeks ago and he left me speechless. I had no idea he was so smart! He had a score of 98 when the average is around 50 or so…so the Tot score off the charts in the intelligence department, and when he was done navigating that test like a little genius, he bit me because I didn’t have a boat! So I was going to affectionately re-nickname him my “crazy genius.” Lesson learned: you never know how much these little ones know, or how smart they really are when they have trouble communicating with you.
In the communication department, the Tot did great also—if he was calm. The problem is the minute his stress level is elevated (and that can go from zero to sixty in two seconds flat) he loses all rationality, and all his words.
Anyway, back to the IEP meeting today. The Tot has been placed in the Autism Self-contained 3K class (including extending school year—attending in the summer), speech therapy 1 hour per week, and Applied Behavior Therapy for 10 hours per week (all during school time), and he starts school on Monday! Yay! And—he will be getting 32.5 hours of in-home compensatory services because he missed out on this week of school.
I’m so happy, and impressed with the team at his school. The meeting went smoothly, no issues, all my concerns were addressed. We all worked together, and I can honestly say that I feel great about his placement and confident in the staff. This is the way an IEP meeting should go!
Thanks to the awesome staff at Lester Elementary School, in Florence SC!
This is an incredible blessing to us because we already know that the Tot needs full-time structure; he flounders on the weekends and has grown in leaps and bounds since we enrolled him in daycare/preschool. School starting means a huge expense (paying for full time daycare, and therapy co-pays) has just magically disappeared—well not magically but I am feeling so good about this today that it feels magical, and he will be getting the support that he needs.
A very happy day
Justice—a subject near and dear to my heart. One thing I find that most of us Aspies have in common is a profound sense of justice and morality. Admittedly it may not be the same sense of justice that others have but that shouldn’t surprise anyone by now because we tend to march to the beat of our own drums.
Justice definitely means different things to different people, but for me (and my ASD kids) I can tell you that when an injustice is perceived, it is very difficult to move past. These are the things, these slights, that keep me up at night. They wake me out of my sleep, and make it impossible to go back to sleep. I have a very difficult time accepting a situation I feel is unfair.
You hear things like “they can’t do that;” “ that is against the law;” “they must provide…,” but the problem with these statements is that usually people/agencies/companies/government can and will do whatever they want until you ENFORCE what they should not be able to do. In other words, you must be able to enforce the law to guarantee your rights, which usually means lawyers, courts, etc.
Most of us, do not or can not go this route…whether because of finances or the undue amount of stress it would put us and it leaves us feeling slighted. It makes me feel like unless I am able to DO something about it, people will get away with doing whatever they want with no consequences whatsoever—and that DRIVES ME CRAZY. I personally cannot tell you WHY I cannot reconcile myself to these injustices, just that I simple cannot.
As many of you know I have had a difficult time with my son’s school lately. We had our first IEP meeting last week that did not go well at all. I complained to the district and just got a call this morning. They think that moving my son is the best way to go (switching schools) and in this way they can accommodate his needs and address all my concerns. But—in the current school, with the current power wielding principal (my words not theirs) he will likely not get what he needs. My bigger concern is for next year when he enters the 5th grade. The amount of times he will need to change classes will double and the workload will be more difficult.
It makes sense to move to an environment that is filled with people more willing to work with him (the district’s autism program is based out of this other school). BUT and this is a big BUT for me…I feel like if I move him then the school who was unwilling to work with me, the principal who was obnoxious and rude—wins. They get to dictate what my son needs or doesn’t need, and which struggles they are going to acknowledge. For me, this is not acceptable. It upsets me because I feel like if I do nothing about it then I am just as responsible for what happens to the next special needs kid that doesn’t get the help they need from that school.
Beyond my feelings of injustice is the fact that I would have to move my son mid-school year, which could be—WILL BE—disruptive to him, and he will have to have a MUCH longer school bus ride. I am very very concerned about adding 3 hours onto my boy’s school day because the special ed bus must come really early and then drop him off really late. To me, again, this is extremely unfair. I don’t want to add to his school day like that, and there is always the fact that he will no longer be able to ride home with his friends AND not be able to ride to school some mornings with his friends.
My awesome neighbor drives him to school a couple of days per week with his children, which is a tremendous help to me in the mornings dealing with Aspie Teen, Tantrum Tot, and the Baby in addition to getting the little man out the door to school. *Sigh*
So I’m frustrated. Part of me wants to fight this school and MAKE them do what they should, but that will be stressful on me and the boys. Plus there is no way to know that they will do it, and it will likely create a hostile environment for the little man. It is just this feeling of the whole situation being unfair that I am having trouble getting over.
I haven’t made any decisions yet–
Another tid-bit of information: Tantrum Tot is still being evaluated for special education services, and if he qualifies to attend the 3 year old autism class it will be in the school that I need to move my 9 year old to—so they would both go to the same school. Then, the move would make sense…but–
I don’t know; What do you all think? Sounding board time.
You know the kind of day when you have a ton of things planned to accomplish and can get to none of it; when the lights are too damn bright, the kids are too damn loud, and the madness does not stop for a single flipping second, and you really hate your spouse for having the nerve to have a job! Yes—it was one of THOSE days, as in Snow Day (kids home from school) number two!
Yesterday Tantrum Tot had such a great day mainly because I did not do anything but play with him the entire day. If I do nothing else he usually has a descent day (talk about Mommy guilt) but the minute I need to work, tend to the baby, shower, or God forbid use the potty all hell breaks loose! Yesterday was a good day; today not so much.
The Tot was cranky from when he woke, and wanted to play but won’t let me even drink my coffee (I think I managed a few sips before it was ice cold). Luckily my niece was here. She and Aspie Teen tag teamed for a while because the Tot was dragging me out of my chair while I was in the middle of feeding the baby breakfast.
By 10:30 Tantrum Tot was trying to run out the front door with me blocking it because a few weeks ago he ripped the hook and eye lock out of the wall. He was screaming for Daddy because he didn’t like Mommy any more. (Don’t remember what started that particular madness.) By the time he settled down Baby was crying…
Tot went out to play in the snow with his cousin and brothers and they kept him out there for a record breaking 2 hours! Perfect for Mom to clear her mind and get some much needed work done…well it would have been if Baby did not start screaming the minute they walked out the door. The whole two hours was spent pacing, bouncing, and rocking a very very cranky kid!
He finally dosed off, and I bet you can guess what happened. All the kids came in from playing outside! All day long like this!
Finally, Hubby is home after having to run over to his Mom’s house (whose Dementia is getting worse) because she was calling people several states away telling them she could not turn off her oven!
Now that it is quiet, I am still extremely stressed, cannot think, and MUST get some articles finished (deadline tomorrow), and get cracking on this week’s school work (due yesterday). I need a bubble bath, a bottle of wine, and for Calgon to take me far far away!!
Now that I have left you all with plenty to read with all my obsessing and babbling, (Do you see what happens when Aspies start to hyper-focus?) it is time to print copies of all my madness for everyone else in the meeting, (they are all getting copies whether they want them or not), hop in the shower, go pick up my mother to watch the baby, and be off to the wrestling match.
My last thought before I wrap up here this morning is to grab the little man’s report card, which came home yesterday, and show the “Teacher Comment” section to you. With the meeting scheduled for today, and his struggles well known, it still says:
“*Fails to bring materials* *Needs organizational skills*… knows what to do in writing, but he has to be willing to put the time and effort he needs into his papers.”
What you don’t see in the picture (I’m terrible at taking pictures) is the bottom hand-written teacher’s comments.
“…is a sweet student. However, he has a hard time making an independent decision and taking responsibility for it. It might be helpful for (the little man) if he were held accountable for some specific responsibilities at home.”
I can’t give up—but good grief, they just do not get it!
Time to go now, but if I’ve forgotten anything that you think of just let me know…I am certain I will be fidgeting with my phone looking for messages at some point during today’s meeting.
Oh, BTW— I will be participating/interviewed tonight in a “TweetChat”. First time—I’ll gather the information this afternoon and post it. Maybe I will “see” some of you there.