Twirling Naked In the Streets – And No One Noticed is now available on audible.com!
Go check it out!
For the next SEVEN days, Twirling Naked will be going on sale starting at midnight tonight!
The Kindle E-book will be on sale for only .99 cents for the first 24 hours of the sale only!
If you ever wanted your kids teachers, or your friends and family to get a glimpse into the mind and heart of someone on the spectrum, here’s your chance to get it for them or let them know how they can!
Pass it on!
That stone wall would be the South Carolina Public School System District One. Today we went for our first IEP meeting with Monkey Boy’s school. And yes FINALLY Monkey Boy has an official diagnosis of Asperger’s Syndrome/Autism Spectrum Disorder!!! (Insert cheer!)
Now first let me just say that the district people themselves have been very helpful. They gave him one of the most comprehensive evaluations I’ve ever seen, sending 3 people out independently to observe him in his classroom setting without telling him who they were and why they were there. They met with me, my wife, they recorded everything we said as evidenced in the summaries they provided us.
The DISTRICT people were very sympathetic and helpful. The autism specialist and the district psychologist were WONDERFUL….the SCHOOL staff…especially the principal, let’s just say I had to put my hand on my wife several times to make sure she didn’t attack them. Several times people at that table almost got an award winning book thrown at their heads!! (Let me say that the Occupational Therapist and the Resource Teacher were very sympathetic and really seemed interested in helping Monkey Boy, it was the two higher up representatives which were completely dead set against us).
The gist of it is that Monkey Boy is struggling in areas of organization, completing tasks, and the largest battle…he can’t seem to bring his daily agenda and homework sheets home on a regular basis, and when he does and we sign the damn things, he loses them or leaves them home or we the parents forgot to sign something and they (the school/his two teachers) take away his recess and ice cream privledges as punishment.
Instead he has to sit inside and complete missing homework, even if he did it, brought it in and the only thing missing is our signature! This has happened often enough that they have destroyed his desire to go to school. The kid comes comes home, flings his book bag across the room and screams in frustration EVERY DAY!!! Which of course prompts my wife to email/call me at work about it, which completely destroys any hope of me getting anything done.
Today, we went armed with a 7 page document of possible accommodations to discuss with them. They however wanted to only implement the things they wanted to implement. They adamantly refused to even consider removing the taking away of recess as a punishment. Saying, “Well we have to teach every child the same and we don’t want him using his disability as a crutch, and contribute to creating uselessness/helplessness in him. He has to be accountable the same as every other child.”
Which of course beggars the question “WHY THE F*** WERE WE THERE FOR IN THE FIRST PLACE ANYWAY? Isn’t the whole purpose of the IEP that measures be put into place because he CAN’T function like everyone else? They insisted that his organizational skills can be improved on, without addressing WHY he has organizational challenges…basically they don’t want to acknowledge that his disability is DISABLING….and the source of his disorganization!
They all want to say that we understand he has Asperger’s…but don’t want to acknowledge that his difficulties are stemming from it. Most likely because then they’ll have to actually do something about it. They did put some things in action which give me hope for some measure of success, but they barely touched the tip of the iceberg. Needless to say that my wife will begin the research for an advocate tomorrow.
They don’t know the fight they just started. I only hope we can survive long enough to win it. We are also looking at putting Monkey Boy into a school which actually has an autism/Asperger’s class in it. We are reluctant to pull him out in the middle of the school year, but we may end up having to.
I’ve been doing some light research on autism etc. for various reasons and I came across something that disturbs me. There are so many people being told their children and themselves as well will never be able to exist on their own, to live their own lives, to love someone or be loved by someone. That they and their children, their loved ones are doomed to a life of perpetual supervision and loneliness.
It makes me ask one question among the hundreds that flit through my ADD brain…ARE YOU FREAKING KIDDING ME???
PLEASE stop pushing this garbage on people, and children especially!!!
My wife grew up without ever being diagnosed. She is high functioning, and struggles in so many areas. And she struggled without ever knowing she was autistic. Along the way, she had too many bad experiences to count but she developed into an intelligent, driven young lady, who despite all the challenges she faced persevered and is still fighting today!
She was living on her own at age 14 and raising her 3 brothers in lieu of parents who were there but didn’t make any of their kids a priority. She worked several jobs at once, maintaining a place to live that her brothers could come stay at whenever they wanted. She went to school, she went to church, she dated, got hurt, dated again, got fired from jobs, quit others, but always came back.
If anyone reading this has ever been told they have no hope of ever being loved or loving someone let me tell you right now that is LIE!!!
I didn’t know my wife had autism till we had been married for around 10 years. There was plenty about her that I could not explain, but you know what? Because I loved her I let them go and kept at it. Our marriage was ROUGH the first 10 years. Mostly due to my immaturity and stupidity, but dealing with the issues which arose because of her autism (though we didn’t know it was autism) was not easy on either of us.
But I have to say this, without my wife’s devotion to family, her drive to make our marriage work, and her ability to forgive, I would not be the man I am today. I most likely would not even be around to type these words, I would have given up on myself and ended my pain, but SHE gave me reason to hope, reason to change. She inspired me, she showed me how to truly love someone and how beautiful love could be. My children, and myself are so lucky to have her, autism and all. Her autism doesn’t make her less…it makes her more…more than I am …more than anyone else I know.
So keep the faith. There is hope for you. You are not doomed. You can and will lead a full satisfying life. There may be some limitations you might have to adjust to, but just don’t give up.
My wife put her heart and soul into our marriage. She put her heart and soul into her book. And though she’s stuck with a husband like me, tonight at least she was honored for her hard work and dedication on one front. Tonight was the Awards ceremony for the Reader’s Favorite Book Awards, which she took second place in her category.
I am so proud of her. She deserves recognition for so much more than this but at least she is being recognized for her work on this book.
Congratulations Jeannie. I love you and I am so very proud of you.
As you may know my wife decided to write a memoir about her growing up with undiagnosed Asperger’s Syndrome. If you’ve visited my blog you’ve seen the picture of the book on the right hand side. It looks like this…
Well some interesting tidbits for you who are interested is that this is my wife’s first published book . (OK so it’s self-published so what?), and she not only wrote it, but she designed the book cover completely on her own, (I had some slight input), and she then formatted it for e-readers all by herself as well. We did hire an editor (any one who is writing a book needs one),
Now for the good part, (yes it does get better), we entered her memoir in a book contest, and she WON! She came in 2nd place in an international book contest!! The name is the 2013 Reader’s Favorites International Book Awards!!!
I am SO proud of her!!! AND she is taking Aspie Teen with her to the awards ceremony in MIAMI FLORIDA later this month. I wanted to go, but with the time I took off from work for the birth of the baby (who is a humungous chunk by now BTW), and the trip to NYC to bury her father, I don’t have the time on the books at work to take off. PLUS taking Tantrum Tot and the baby and Monkey Boy and Aspie Teen to FL right now is just too much….
To be honest, she is kind of freaking out about going without me. And I’m very nervous about not being there for her as well, but I insisted that she go. She doesn’t get nearly enough accolades for doing the job she does raising the boys, saving their lives when the communication differences between me and them flare up, maintaining a blog, being the Autism expert on Answers.com and writing her articles, and having the gift she does to learn…she truly is an amazing woman and now finally she has an opportunity to stand up and be recognized for all she does.
So thank any of you who have bought the book, or read the book. And if you haven’t left a review on Amazon, would you please do so? And if you haven’t bought it, go ahead, Christmas is coming…treat yourself and splurge on the e-book! It’s only $3.99…and if you have an Amazon Prime account, you can borrow it for free!
And would you please go to our Facebook page and add/like us? You guys are the best!
My wife, who is an Aspie cannot take meds that are supposed to put her to sleep. Instead of going too sleep and staying asleep she regains consciousness and jumps up in a panicked state.
Meds that would put me out for hours (and have) , merely induce a mild state of relaxation in her followed swiftly by the onset of panic.
During dental procedures the novacaine fades almost immediately after her being injected. Which causes no end of trouble.
I am wondering if any of you have similar experiences when taking such meds?
Our theory is that people with ASD metabolize these chemicals differently.
Please share your experiences with us?
I just wanted to go on record with something. My wife is a truly amazing woman!!!
Many of you have come to my blog because you follow her blog so you have an inkling as to how bright and brilliant she is.
But you know what?? I went to take a minute to brag about her because you just don’t know.
She is one of the bravest women I’ve ever met. And one of the smartest. At any given time we have some major things going on in our lives. Things we don’t talk about here on our blogs. And misty off the time its her tenacity that inspires ME to action.
She will not back down..especially when defending our kids. In many ways she ids the watchdog of our family. Our kids love her to death. (And some days I think it might just be her death). Despite all the SPD issues she battles with, she continues to allow them to be kids, more than even I do. A lot of Times,I ‘m trying to reign then in because I know how much the noise sets her on edge, but she’ll yell at me too leave them alone.
For the past week or so, she’s been in so much pain. I’m talking tears in her eyes, pain worse than labor pain, can’t walk further than the drivers seat of the minivan in front of the house and back. She alternates all day between the sofa and the bed and still is in pain 24/7.
And through it all, she still is taking Tantrum Tot to daycare (with Aspie. Teens help), helping Aspie Teen navigate the new online school he’s in, doing school work and trying too write articles for answers.com to help bring money in to the house.
Last night she let me pass out since I had been awake since 3:20 a.m.. even though she was in pain.
Today, she’s been feeling sho depressed and scared, and she still sends me a text apologizing for feeling down!!
Listen ladies when your pelvis sound like rice crispies and your body is gearing up to push a Volkswagen out an opening the size of a silver dollar you can be freaking anxious all you want!!!!
I love her so much and I’m so proud of all she’s accomplished since her diagnosis…
I am so lucky too have her!
This JUST now happened!!!
We let Aspie Teen sleep in since I was home today. My wife usually gets him up the same time she get’s up to bring Monkey Boy and Tantrum Tot to school/daycare, which by that time I’m already at work. I wake him up and tell him to come down and take his Adderall first thing, since we don’t like him taking it too late In the day.
He comes downstairs, walks into the dining room/office where she is typing away and says “Why is Dad home?” She flips out, complaining about his coming in the room and yelling first thing in the morning. He didn’t yell really , what really happened is that he interrupted her and she can’t take interruptions so she lashes out angrily when interrupted. However, even though this has happened to him a million and one times already, he still can’t process that she doesn’t like being disturbed/interrupted and she can’t control her reactions when she is interrupted.
THEN he asks if he can drink his Monster Energy Drink with his Adderall. Wife flips out, “I told you before…NO…you can’t take those two together, it’s not good for you, your heart gets palpatations NO…he goes in the kitchen in his sullen way and takes his medicine. She goes into our room to start getting ready for her doctor’s appointment and he goes and sits on the sofa and puts his finger in his mouth looking all the world like a dopey kid who’s just been given a sedative. (He DID just wake up after all). I told him take your finger out of your mouth before I take a picture and post it online! He responds by saying I’m biting on my finger to wake me up. (HOW that makes ANY sense is beyond me.)
Wife comes flying out of the bedroom (our master bedroom is on the ground floor), “Don’t give me that…I’m not going to let you sleep in when Daddy’s home anymore! You never act like this when I wake you up first thing in the morning when he’s at work”…to which he replies “I wish you would, it’s easier for me to get up earlier than when I sleep in. ”
Now my wife heard a “tone” in that….which apparently to her was disrespectful. In her head, she’s doing a nice thing letting him sleep in. And when she points it out to him, he answers with indifference to her niceness making him seem ungrateful. (which happens with him quite a bit). However, HE can’t control his tones any more than SHE can accurately interpret tonal values and inflections due to their Aspie-ness.
So she says to me, “Tell him why I’m upset…to which I reply “I don’t know why you’re upset…why are you?” I then have to play mediator and point out the following: (now I’m admitting here that I was very sarcastic and WAY over exaggerated the delivery of the following), “YOU are upset because you think he’s being ungrateful to you being nice. HE can’t help the fact that he doesn’t understand what is you mean, any more than HE can tell that his tone makes him come across ungrateful anymore than YOU can accurately detect his tone because HE’s an Aspie and YOU’RE an Aspie and neither of you can help what you’re doing! Now neither one of you talk to me for a half an hour!!
By the end of the tirade, we were all laughing which helped diffuse the frustrations which were rapidly mounting! All this Aspie-ness is going to be the end of me one day I swear!
In all the madness dealing with Tantrum Tot’s diagnosis and the trip and the in law, I didn’t have a chance to post this. But I need to make sure I don’t rob the credit that Aspie Teen is due.
We have been watching Master Chef with Aspie Teen (14) every week. Aspie Teen has been developing his skills in the kitchen and this show is encouraging that. I have got to say that we are hoping this is a special interest that he continues to go after. To that end we are trying to encourage him to pursue it and he’s been learning how to cook.
I don’t usually like doing a lot for my birthday. Besides always being short on cash for the special events in our lives, it’s just too much drama trying to get a sitter for the Tot. The only one we can trust is usually the monster in law…and most of the time she makes it SO not worth it. We might go out, but more often than not just end up either making a dinner or cutting a cake on birthdays and special occasions. But this year Aspie Teen got an idea into his head that he wanted to make me a Master Chef Dinner.
So while I was at work, wifey took him shopping for the necessary ingredients and the pan that was needed to do what he wanted. He searched the Master Chef website, and watched YouTube videos on how to do what it was he wanted. He devoted his time and energy to making me something special. I am so proud of him. He did such a great job. I LOVE that he expended the energy he did to show me he loved me as only he could do.
After all the arguing, after all his pestering me every week for a new video game and getting yelled at for it, after all the oh my GOD how did this kitchen get this trashed AGAIN…he took the time to research, to watch, to talk to his mother…and produce THIS
Now I’m a guy…which means I’m a carnivore. I LOVE meat…Steak especially. My wife took Aspie Teen to buy New York Strip steaks…and he LEFT THE FAT on them…(WHICH I LOVE)…and he made mashed potatoes and green beans with butter, garlic and lemon juice. The steak was one of the BEST I’ve had in a LONG time. I’m not just saying this because he’s my son…this steak was SUPERB…he made it medium rare just the way I like them…it was tender, it was juicy and it was EXCELLENT. Nothing says I love you Dad like steak…unless it’s your son taking the time to investigate, research and purposely execute cooking said steak! Well done Aspie Teen…Bravo…
The day is done. It was a doozy. I’m going to start at the beginning to help me organize things. I’m still in a state of shock I think. Please bear with me, this my ramble a bit…
Since I’ve gotten a lot of new followers recently (thank you very much for that BTW), I’ll give a brief back story here…
I am married to the most wonderful woman in the world. Two years ago, we discovered that she had Asperger’s Syndrome (AS), which is a high functioning form of Autism. This diagnosis changed our lives and the way we saw things. It explained SO much of things that were going on with her that we had no explanation for. We have 3 boys, ages 14, 9, and 2 and she is due to give birth in September to our fourth and final boy.
Since her diagnosis, we have come to suspect that our boys also are somewhere on the Autism Spectrum, also high functioning. We’ve been having a hell of a time to find people where we live who will diagnose our children. The psychologist who diagnosed my wife has seen my kids when she’s had to bring them to her appointments and he’s confirmed that while he does not diagnose children, from what he sees, they are most likely on the spectrum as well.
Back in November, we took the youngest, lovingly referred to as Tantrum Tot and/or Tommaggedon, to a speech therapist at the referral of his primary physician. He was diagnosed with Severe Repetative Expressive Speech Delay. At the time he was barely 2 years old and they rated him at 11 months along in his development. This strengthened our belief that he was on the spectrum, and the person who diagnosed him, said she suspected Autism as well. His pediatrician referred us to a place in Charleston, SC, which is three hours away from us, for Autism screening. His words were “to confirm what he strongly suspects”, which was that our youngest son had some form of Autism.
Today, we finally after much waiting (9 months of waiting) had the appointment. I woke up at 4:30 in the morning today, after only having 16 hours of combined sleep for the week, got dressed, woke up my very pregnant wife, made my cappuccino and her coffee to go, went to pick up her mother and her boyfriend to stay with my other 2 boys, got the Tot dressed and in the van (he woke up and STAYED up) and we were on our way. Our appointment was at 8:45 a.m.
First, I got on I-95 South and missed the sign that said go THIS way to STAY on I-95 South. (I drive on i-95 NORTH everyday). I was on I-20 for about 15-20 minutes before my wife realized it and now we had to turn around and head back. Luckily there wasn’t much traffic at that time of the morning and I was able to MOVE IT MOVE IT.
(Oh yeah this was the first time we’ve taken the new van on an extended trip, which we were worried about since we’ve had problems with that model before. Click here to see the full post on that).
Along the way the wife gets hungry, (being 8 months pregnant does that to a person I guess), so we pull off the highway, and the wife sees a Subways sign…she now wants Subway’s…no argument allowed. We of course can’t find it. We’re losing time…the van starts doing something funny which made my blood run cold, my nerves are shot, so I pull a U turn at a busy intersection and when I do, I’m staring the stupid Subway’s in the face. We pull over, she runs in cause Tot fell asleep again right before we got there and I opted to stay in the van.
Now we’re behind schedule. Again, I’m moving it moving it. According to Tom Tom we’re still going to make it. Tot woke up again and is yelling in the back seat cause the sun is in his eyes, and we don’t have any Tot sized sunglasses with us. I valiantly give him mine, (my LAST pair which are polarized and I LOVE them, because I’m part color blind and when I put on dark shades, the world “washes out”, but these actually brighten things for me). He bends the crap out of them, but won’t wear them. We manage to find a long patch of shade and stay in it. He calms down. We’re still making it…we pull into the general area right on time.
We find the building, and pull into the parking garage which apparently is attached to the medical center. However, it was a smack dab in the middle of this HUGE a$$ medical center and no one we asked knew where this particular office was. We had been trying to call them for the past 20 minutes prior to our arrival, to let them know how close we were. Because I swear to GOD if we got there a little late after 3 hours on the road and they tell us we’re not going to be seen there is going to be some CARNAGE going on! However, the number listed on the letter they sent us not only not picking up, it’s not connecting us at all!!!
So by the time we find the correct building, get upstairs and hit the receptionist area we are about 15-20 minutes late. Keep in mind this appointment was for a screening that would be FIVE hours long. I’m anxious and doing my Jedi/Samurai breathing techniques because I KNOW it’s coming…and sure enough the receptionist starts asking us questions followed by “Oh no, I don’t know if they’re going to see you now, you’re late”…I took my final deep breath, walked over and started to speak, but my wife was already giving her the run down! “Look, we’ve been on the road for THREE hours, we tried calling, and your phones aren’t picking up, and it took us NINE MONTHS to get this appointment. We are NOT leaving here without being seen!” And through it all, she was very nice and calm about it too! GO HONEY!!! SO PROUD OF YOU!!!
Well we wind up being seen…Tot is behaving. We are in the first screening room, where they have a bunch of toys for the kids to play with. We’re being interviewed by three people, one a PhD and one doing her internship, and the other developmental pediatrician as well. Tot is behaving like a prince. He’s smiling, laughing, hugging….HUGGING! He ran into a few rough patches when he didn’t get his way, threw a little mini tantrum, not a meltdown, all while we’re being asked some very thorough questions by the person who is engaging Tot the whole time.
Now I must say this. I’ve been in doctors offices where the people treat you and your kids like they can’t wait till you leave so they can process your insurance forms. The exam, the visit, it’s only a formality on the way to their getting paid. But these people were very kind, very compassionate and very very good communicators. They asked us questions, listened, asked for clarification, and didn’t utter a word of contradiction or try to shoot anything we said down.
They take him into another room with toys, ask us to please not interfere if we can help it. And begin to play with him and observe him. His interactions, what he does when he can’t get his way, how he plays, how he’s communicating with them. After a while they let us take a 30 minute break for lunch with Tot in the cafe downstairs. (That experience could be a whole other blog post).
We come back up and they sit us down and lay it on us. Tantrum Tot does NOT display Autism. His social interactions are too involved to even consider it. Yes he has speech delay, but even that is being progressed rapidly since his introduction to day care. (Next week he starts going full time BTW). He looks them in the eye. He points to specific objects and clearly indicated he wanted more. He brought things to us to see, he brought them to them to see and show them what he had.
According to the scoring they did, on a scale of 1-10 with 10 being the highest and showing how severely he displayed Autism. He scored a 1. They said the difficulties they showed him manifest were most likely behavioral and could be corrected with appropriate intervention.
They were very considerate. They were not the least bit judgmental and never indicated his behavioral issues were the result of bad parenting. They gave us documentation on a program in our area which could continue to monitor Tot and possibly get us services based on the Speech Delay. Again, the quality of what they did and how they did it, were honestly the most humane experience I’ve had in this 8th yearr of being in SC.
We packed up the Tot, got the Tot and headed home.
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