And the Tot Marches On

Training with Rocky continues. We’ve been redirecting him by when he starts heading his way down Meltdown Boulevard, finding out what it is that is upsetting him, and what he needs/wants to calm him down. Then we make him pet Rocky’s head 10 times then helping him achieve his goal.

For example today he was on his way to a meltdown due to his playing Lego city on the computer.  We made him pet Rocky 10 times which calmed him down and then I helped him on the pc. (Little known fact: petting dogs releases Seratonin into your system, which is like an anti-depressant, and makes you feel calmer.)

Tommy is really bonding with Rocky, and today he said I love my Rocky…and went into the kitchen to pet him and snuggle him spontaneously.

Also Rocky is so soft that my wife is really enjoying sitting there rubbing him…poor dog…he is soft and fluffy….so he doesn’t stand a chance in this house!

So Proud of the Tot!

After a miserable day yesterday that left his mother in tears by the end of it,  the Tot seemed determined make up for it today,  because he’s been so well behaved that I’m wondering what they put in his sippy cup at school today and where can I get a hold of some of that stuff myself!

He’s been happy,  he’s asked for help,  he’s listened,  he took a bath AND he went potty all by himself with no prompting for the very first time today!!!

He’s been walking around without a pamper/pull up all evening,  (which made me very nervous I’m not ashamed to say), and then he just gets up and walks to the bathroom,  climbs up on the porcelain throne,  and lets go!

Some of you may be like what’s the big deal,  but some of you know what a VERY big deal it is when your special needs kid does something like this because you never thought you’d see the day come when they did it!

Most nights, he climbs into my bed and holds my wife hostage for 4-6 hours before he passes out. Tonight, he let me bring him to bed and lay down next to me and passed out in 45 minutes.

I don’t know what the change is but I pray to God to please let it last at least a few days!

 

Tot at the playground-he looked so happy I thought it would be the perfect pic to go with this post.

The Incredible-ness that is Monkey Boy!

Today was a long day for all of us starting with a 10:30 a.m. baseball game for Monkey Boy, then going to stores with Monkey Boy, Tantrum Tot and the Chunky Monkey in tow….woo hoo…THAT was FUN…

Anyway we go home after the stores and continue our floor project. We have the foyer, living room and dining room done (except for the trim and baseboards, and half the kitchen. Well today was the first day for the pool in our subdivision to open and Mr. I’m a fish Monkey Boy has been pestering us for the past 2 weeks to go when it opens. We let Aspie Teen take Monkey Boy to the pool, as he’s had a LOT of practice in that area from all the trips we’ve taken to hotels with pools, and lazy rivers…Aspie Teen does a really good job and Monkey Boy is a VERY strong swimmer. Also the pool  is literally a straight shot to our house and if you sprint it’s less than a minute away.

Well apparently Aspie Teen’s friends two brothers came by and went to the pool with them. A few hours later Monkey Boy and the Teen come in no problem, go change and life goes on…

Well when Monkey Boy was trying to fall asleep, he said “What’s the use I’m probably just going to have nightmares anyway.” Now I know Monkey Boy has had Night Terrors before so I ask him how long has he been having nightmares, and he was very evasive. My wife comes in from dropping the Monster In Law off at her house and he told us that Aspie’s Teen friend’s brother who was at the pool with them almost drowned in the deep end and Monkey Boy jumped in and SAVED HIM!!!!

Monkey Boy saved a human life…no thought, no doubts…saw the situation at hand jumped in and handled it!!! Words cannot describe how AMAZED AND PROUD OF THIS KID I AM!! And just when you thought you couldn’t feel any better about your kid, he goes on to say that he just keeps worrying about what would have happened if he wasn’t there…that the boy could’ve drowned…he’s feeling bad because he couldn’t stop it from happening so the other boy wouldn’t have had to experience what he did and probably have nightmares himself.

I have the MOST AMAZING ten year old in the world!!! Not only did he SAVE A LIFE at ten years old, but he gave me a perfectly good reason to do a cyber flip-off to all the idiots in the world who insist on thinking that people/kids on the spectrum are LESS or that they cannot do as well as NT’s in any given area…well guess what? My kid saved a life without hesitation or discussion…what did yours do? NAH NAH NAH NAH NAH NAH NAH!!! (I’m sorry, that was a little immature wasn’t it?)

Three cheers for Monkey Boy! The greatest 10 year old on the planet!

Send it on!:

Now Available in Audio format on Audible.com!!!

Twirling Naked In the Streets – And No One Noticed is now available on audible.com!

Go check it out!

Pass It On!

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!

Banging Our Heads Against a Stone Wall

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.

A Christmas Miracle Yesterday

As you all know I HATE going to the mall with Tantrum Tot. Not for any other reason except that the screaming, hitting, clawing and assaulting he does when he can’t have his way is difficult to go through in public. It’s bad enough that it has to be endured, and it does, I get that, I do….but it’s difficult to have to endure it in public. That’s the simple truth of it.

Well yesterday, because we have no viable babysitters who can handle Tantrum Tot, we had to load him, Aspie Teen, Aspie Teen’s new friend (I forgot to blog about that but I will soon I promise), and my 15 year old niece in the van along with wifey, and head to the mall to finish some shopping.

Well it went pretty damn well for the most part!! First we went to get the Tot a MUCH needed haircut…he actually endured most of it pretty well but wouldn’t let the girl finish his bangs and I had to hold his head straight to let her get as much as she got done, done and then calm him down afterwards…with the judicious use of lollipop bribes….that being done, we headed into the actual mall and of course the first stop was the American Train Company ride so he could get his train addiction satisfied.

Tot B4 haircut

 

Tot After Haircut

Tantrum Tot has developed a weird fascination (Special Interest?) in trains. And it’s not just Thomas the Train anymore…any train will do!!! He’s is to the point where he now where he watches YouTube videos of kids playing with train sets!!! (As well as other toys in general). He is actually watching videos of kids playing with toys!!! Well we got him to the train ride and he waited SO patiently for the train to come around and let the kids out…about 15 minutes…and he sat still in the carriage waiting so well..this is virtually unheard of for the Tot!!!

Tot in the Train

Well he got on the ride and did his minimum 2 rides around.  Then we head over to Barnes & Nobles so that Tot can play with the trains. I had Tot and Chunk A Monk with me, while wifey took my niece shopping and Aspie Teen and his new friend just went to hang. Well I gotta tell you, no lie, we were in B&N playing for at least 5 hours!!!  And the whole time Tantrum Tot had NOT ONE tantrum or meltdown!!! He played on the Thomas the Train table, then at one point he wanted to go to the other side of the kids section, and he spent 20 minutes running from one side to the other…then went back to the table for the rest of the night…

Chunk A Monk behaved like an angel too!! At one point I took him out fo the stroller/car seat and layed him on his changing mat in the corner and gave him some back time…he ate 3 times, I changed his pamper and he took 2 naps. He was awake the whole time, just gooing and gah-ing being happy and flirting with anyone who would look at him!! My wife didn’t come get us till 9:30 and that is when he happy place dissolved of course…

I gotta tell you Tot didn’t flip out till he realized we were leaving the mall and then he flipped out so bad it’s a wonder a cop didn’t tackle me while I was trying to get him out of the store and then strapping him down in the car seat in the parking lot. He threw a fit of EPIC proportions and I swear it must have looked like I was trying to kidnap a kid (if not for the fact that he looks JUST like me! LOL) AND he stopped very soon…and after we got home he went RIGHT TO SLEEP!!!!

This is my Christmas Miracle story. In about 30 minutes we have to take him to Wal-Mart and I’m praying for a repeat of the same.

Straight From the Heart

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.

And The Madness Begins

I gave Tantrum Tot a stuffed Snoopy doll this week to snuggle in place of his mommy who’s gone on a trip. Well Monkey Boy has a stuffed animal too though he hasn’t really used it in a while, but it was down in my room on the dresser.

Well as I’m sitting FINALLY trying to have my coffee…the yelling from my room starts…Tantrum Tot wants Monkey Boys stuffy. Monkey Boy will NOT relinquish it. He cannot understand or learn (and believe me I’ve tried to teach him numerous times), just give the item to Tot who will lose interest in it in 5 minutes, and walk away from it, then he can go get it again. No instead, Monkey Boy’s screaming cause Tot now has him by the hair in one hand, and nails dug into his chin with the other!!!

It’s not even 8 a.m. yet. Is it too early to put Baileys in my coffee? It’s got to be happy hour SOMEWHERE on this planet right?

Diagnosis News!!!

Aspie Teen has received his official diagnosis of Autism Spectrum Disorder!!!!

Now we can pursue an IEP with his online school and get some much needed accommodations. He’s not doing that good according to his mother, and he failed two subjects this quarter.

Unfortunately, Monkey Boy’s diagnosis did not go so well. He’s just too damn social to receive a diagnosis.

Everyone keeps looking at how verbal he is and how interactive and they automatically rule it out…I’m starting to doubt myself. Maybe he’s an NT incognito and just displaying Aspie traits….a lot of them…I just don’t know anymore.

You remember that Tantrum Tot was screened and it was decided he was eligible for support services through a local program?

Well they sent us for a STAT screening and of course he failed that one again. But at least they acknowledged that the STAT screening as it stands does not allow for high functioning autism and they are going to have him undergo a full autism screening again.

And he still qualifies for services with their program due to his severe speech delay.

So their is still hope on the horizon.