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JULY 26, 2009 9:02PM

Tales From My Autistic Umbrella......... open call

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Nswing2020_1 With Arms Wide Open, by Creed. That's Noah's song. It's the song I used to listen to over and over while I was pregnant with him. What a perfect song to welcome a child into this world. "Welcome to this place, I'll show you everything, with arms wide open."



He came into this world bubbling over with joy and curiosity. Quiet and thoughtful sometimes giving his solemn expression the look of a wise man. He was every mother's dream; happy, bubbly, fun, cute, quiet and crying was a 20 second event, if that long.

mom noah baby2

He grew into a toddler and was up and running. The kid was tough as nails. Unlike most kids, he'd fall and scrape his knee, get right back up without acknowledging the scrape, save for a miniscule glance, and he'd be off and running again. He always seemed so certain in his direction, as if he had somewhere specific to go and was determined to reach that destination with an air of right now to it.

At around 16 months old something happened. Something changed. One night, the 15th night after his MMR vaccination, I put "little Opie Taylor" to bed and Jack Torrance woke up in his place.

 

nj

 Noah was angry, aggressive, willful, and mean. What was worse was that he was strong as Hercules. It was beyond "unusually" strong. It was beyond incredible. It was scary. It is a scary thing when you have an out of control toddler who can kick your ass if he took a notion to. I took a supreme, daily ass kicking from him for the next 3 years. I have the scars, knots and fractured skull to prove it.

The words he had learned disappeared, never to be heard again until he was nearing 4 years old. I didn't waste a moment in denial. My perfect child had seemingly disappeared and I was going to find him........... or die trying.

We went through a series of circus performances before we ever got any real answers. It took 1.5 years, I am just making a long story short so I can get to the good stuff.

At 2.5 years old we took Noah to a behavioral therapist who was really a shrink. This particular shrink (not making any shrink blanket statements, here, and I use the word shrink b/c it's lighthearted and because it's easier to type that psychologist/psychiatrist) had what he thought was the answer and I guess I could have predicted what he was going to say from the waiting room, which was ADHD. He prescribed Adderall. Let me just interject something, here. SavageHusband and I were those parents who were hell bent against medicating - we were the Tom Cruise of parenthood. Until that moment. We had reached a point where we were worn out, at the end of our ropes, had taken one too many ass-kickings and were ready to deal.

We had gone there in hopes of getting a scenario enacting/learning "class," if you will, in the form of therapy. My oldest son was hoping for a padded whack stick so we could all beat the hell outta each other and get rid of some pent up anxieties, that are known as (by us, anyway) the shock waves of Autism. Autism is the BOOM, and the shock waves that extend out from the boom cripples or defeats some bystanders and annihilates others. But what we found was a menu of drugs to choose from. Disappointed but also defeated, we were willing to give it a try.

The adderall made Noah violent and dangerous. We phoned the shrink who must have heard one too many exaggerated parental stories and told us to persevere; it would even out in a few days. We took Noah over to visit the shrink for an up close and personal view.

Noah commenced to have the worst tantrum I have ever seen. He was throwing shoes (hard), books, magazines, toys... other patients were ducking for cover behind over turned coffee tables and under chairs - all this he managed to do while being held tightly by ex-USMC, strong as an OX savagehusband!!!! and me trying to get in the way of flying objects so they wouldn't hit anyone else and my oldest son, getting kicked in the head repeatedly while trying to prevent Noah from getting his hands on any more ammo while my youngest daughter cowered in a corner.

The receptionist called the Shrink out of his appointment, she must have debriefed him judging by the way he was running. His facial expression, when he saw the chaos in the waiting room, told me he had never seen a reaction such as this.

After another round of wrong diagnoses we looked elsewhere for help and ended up at The Emory Autism Center. They diagnosed Noah with A-typical Autism/PDD-NOS. Atypical because he was not the typical Autistic child. He did not have all of the symptoms, and thank God, no retardation. PDD means Pervasive Development Disorder and NOS means Not Otherwise Specified (I can't believe this was medically worthy of it's own acronym).

Early intervention is Key! Noah started school at the age of 3. I also enrolled him in outside speech therapy classes for kids with special needs - specifically autism spectrum disorders, where he would lay face down on the floor and refuse to participate. The "therapist" would then try to pick him up and promptly get kicked - then stare at me as if I was the worst mother in the world for not punishing him for it. I would then remind her as I did in every visit, "he has Autism, he doesn't like to be touched by strangers." Finally one day she flat admitted she could not help him. This ought to be criminal. She had only one method of teaching/reaching a child and it wasn't Autistically friendly so it was adios amigo!

One of Noah's early teachers reminded me of "The Miracle Worker" (Helen Keller's teacher). Noah advanced by leaps and bounds in her class and in every area! She was an amazing teacher with no end to her patience and no end to resourcefulness.

I think it is noteworthy to mention that Noah had a strange affection for "boobies." The bigger the better. You see he always had an extreme affection for all things soft. In the early years it was hair snuggling, cat squeezing which made the cat avoid him, and even butt cuddling which was, well, embarrassing when in public.

But as he got older he began to verbalize more and more and began telling women and girls, "I yike boobies."

Noah's Miracle Worker teacher just might have been able to shame Dolly Parton, and I knew what was coming the moment I first saw her.

I finally pulled her aside to hopefully explain this affection before he announced it to her. She smiled before I even finished and said, "Yes, he already told me."

Once Noah and I were at an antique mall. There was a booth that had caught my interest and was located right next to the open show room full of bronze statues; most of them mermaids. I knew it would be of great interest to Noah and I watched him out of the corner of my eye. There was one mermaid who was on her bent "knees" making her just the right height to meet Noah at eye level with her bare breasts.

He went over to her. He had a huge euphoric smile on his face. He looked at me to see if I was watching him and feeling satisfied that I wasn't, positioned his expectant, cupped hands directly over the mermaid's "boobies," hovered there for a moment, in sweet anticipation, he could almost hear a chior singing Halleluja.... then he squeezed them. The smile dropped off his face as these were not soft at all! He knocked on the the cold, rock hard breasts with his little knuckles. That is when I heard the snickers of several people who had quietly gathered 'round to watch this humorous scene unfolding. Noah looked around, turned 3 shades of red, hung his head and moseyed on back over to me.

That school year, Noah's speech improved, he was reading almost on grade level, he had read all of his sight words and was integrating into regular classes. At the end of the year, The Miracle Worker recommended he be placed in a regular classroom setting with OT (occupational Therapy), Speech and language therapy, and adaptive PE.

He would also be changing to the school in our new district.

On the last day of school that year, The Miracle Worker came to my car window after kissing Noah good-bye for the last time, and shoved a black book into my hands. Biting back tears she said, "Just go," then quickly turned and walked away.

When I got home I opened the book. It was a scrap book she had put together of her time with Noah, with a sweet note telling him she would always love him.

  Noah beach018

Then there was baseball. My oldest son played baseball and we are all big Atlanta Braves fans. Once we went to a particularly exciting game, the 25th anniversary of Hank Aaron's baseball hall of fame home-run (I was there the night Hank hit that home-run as well, something I will never forget.)

Well it looked like the braves were losing towards the end of the 7th inning and a whole load of people got up and left so we all got up and snagged some great front row seats right behind home plate. There was a dude at the end of our row, who'd had one too many 'cold beers.' Every now and again he'd shout to the team something so slurred no one could make out what he was saying.

This got Noah's attention. He watched closely each time the man would shout. He noted the man would shake his fist while shouting. Noah figured this was customary behavior for the live viewing of baseball games and held his fist in the air, curbing his eyes toward the man to make sure he was following along properly, and shouted some incoherent gibberish. This was so funny I did not do anything to stop him. It was the highlight of the evening even though the Braves made a miraculous come back and stomped the Diamond Backs!

When baseball season was upon us Noah wanted to sign up. I saved up the incredibly expensive dues and hid it in my secret clock compartment. My daughter wanted to play also but was deterred by the lack of other girls so she signed up for ballet.

I was a little afraid to sign Noah up for baseball out of fear of how the coaches would react and the other kids/parents as well because it was going to be difficult to teach Noah the rules of the game. This would, I thought, lose them their competitive edge. I talked it over with the man who did the signing up. He assured me no one would treat Noah any differently than all the other kids - not better and not worse.

noah baseball2

The season always began with a big parade through town. I was afraid Noah would jump out of the trailer full of hay that his team was riding in that day. I just took my older son and dropped him off with his team. Then, feeling guilty for being over protective, I hauled butt back to the house and quickly dressed Noah in his baseball uniform. We ran out the door and made it just in time for his team to load up. I asked the coach to keep a sharp eye on my little dare devil. He promised he would.

The parade went off without a hitch. Noah was so excited to see me standing along the road waiting to snap his picture and wave to him when he passed by. My older son was busy talking to the cute girl who ended up on his team to notice me much.

It was opening day and Noah was at bat. I was floored when he hit a home run. I think I was the loudest, most excited, bat-shyte crazy mom on the field that day! It was one of those nutty T-ball home runs where the kids in the out field pick up the ball and look at it like, "What's this doing here," meanwhile Noah is running the bases backwards and the coaches from the other team are even steering him in the right direction. Finally Noah got going in the right direction and the right fielder threw the ball to the left fielder because he looked like he wanted it. Noah rounds second base and I'm screaming "GO NOAH GO!"

The left fielder picks up the ball and this kid knows what he's doing and he throws it to the third baseman but the kid has way more strength than he can control and it sails over the third baseman's head, sails over the first baseman's head and into the dugout. The shortstop and the first baseman go after it at the same time, meet up at the entrance of the dug out and try to squeeze through the door at the same time like the three stooges and end up falling down. The crowd is going WILD! Noah had reached third and stood there a moment to take it all in, then he was running for home. "GO NOAH GO!" I shouted louder than anyone. He jumped on home plate and high fived everybody in sight.

When he came into the dugout I ran to the fenced in cage and we grasped hands through the wire. I shouted "YOU SO TOTALLY ROCK, DUDE!" He was the happiest little boy in the world that day. And every day that there was baseball.

 

The coach told me one day, when he was fed up with temper tantrums, poting and tattling, that he wished he had a whole team of Noah's. "He's always happy, never misses a game, he's always ready, he always does the absolute best he can, he never pouts, he is a great sportsman and he is always glad to be here." He said.

Wow! That made me feel great! And my fears about the parents who are super competitive getting upset because Noah might make mistakes, didn't behave like that at all. By the end of the season, parents, aunts, uncles, grandmothers and grandfathers, whom I did not even know, were screaming just as loud as me, "GO NOAH GO!" He had his own cheerleading section of people I had not noticed or met before, that chanted NO-AH, NO-AH, NO-AH, when he was at bat. This always made the other team nervous and they would back up. Then Noah bunted, and got 3 RBI's and a home-run that game.

When the coach presented Noah with the game ball that day, late in the season, he made it very ceremonious, detailing Noah's accomplishments in that day's game and praising him for always having a winning attitude. Even the other team cheered when Coach wrote Noah's name on the ball and put it in his hands.

As much as I'd like to end this chapter on that powerful up note, I just gotta mention one more thing about that season. Noah went with me to my daughter's Ballet classes. He wanted to try. I thought the instructors would not like this because I had only paid for my daughter. But no, they thought it was a great idea and he ended up being the best dancer in the class.

Welcome to this place, I'll show you everything with arms wide open  perfect lil angels3

For More Tales From My Autistic Umbrella please click the links below:

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

 Click here for Autism Shirts for the whole fam-damily - for those public outings and  just being sick and tired of the judgments of the clueless.

 If you are a parent and you suspect there may be a problem with your childs learning, social interatction and behavior and you don't know where to start, how to get help I have provided some links below that hopefully will help or at least point you in the right direction.

Babies Can't Wait (for ages 3 & under), Head Start, Early Head StartEarly Intervention, Emory Autism Center PDD, Emory Autism Center - Autism.

If anyone has any other links they would like to share, put them in the comments and I will add them to the links above.

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Don't get me wrong, there was and is a lot of hard as hell hurdles to overcome of face the fact that they can't be overcome, but I decided to focus on the positive in the snap shot of Tales From My Autistic Umbrella. For the details of clinical trials and tribulations, the emotional death experienced by the primary caregiver, the stress, the pain as well as the joys, accomplishments and celebrations please click the links in the bottom of this post for the full story.
Much Love..
AS
I wasn't on OS when you started writing about Noah. I am a father of a special needs (i loathe that term) son, now 26. He was born normal as normal can be: God had other plans. I grieve for all who have or deal with situations outside the norm. You will always have my friendship.
rAted!
Thank you for telling Noah's story. I'm new to it too. It's really tough when you start out on the road everyone else is on and then you're not.
Very sweet and thank you for sharing. I dunno, while I understand what a challenge it is for you, Noah sounds like a perfectly normal kid...and that can be attributed to you, for making him feel safe, loved, and able to experience life like any other kid.

:-)
Helluva family, AS . . . helluva family. Clearly, though, a whole lotta love!
Spotted - you know they say kids can be cruel? Well that doesn't seem to be necessarily so for the younger kids. They just blurt stuff, out yeah, but that's b/c they don't know not to. But as Noah gets older, the cincrete parts of education get closer and closer to the norm, but social out-casting has begun (discussed in Chapter 7) and I wish beyond measure that he could fit in. His different and the other kids can sense it but it is not real obvious so none of them knows exactly what is different about Noah. But it's hard on him and his self esteem, to be sure.
I know what you're talking about. But I am glad he has a Mom like you to help him along. :-)
What is this 'Fit in' ? :)

~hug~
WOW! Savage. Wow! I found my heart beating wildly as Noah rounded third. He's so damned lucky to have parents like you guys.

I've often afforded functional autistic people a place to learn social interaction skills through the various programs in the states I've worked in and I absolutely love being around them. If you know what to expect before you meet them, they are an absolute joy; refreshing, direct and honest.

A skill set the rest of humanity could use.
This is the first of these installments that I've read (I think) and I admire how strong you are. I understand how thrilled you were with the baseball game, knowing that it didn't signal the end of Noah's problems, but was a great moment for him and you. I will keep reading your posts. (Rated)
What a well-told story, and good for Noah not just for baseball (though that's great) but for being a team player and having all those well wishers. Support means everything.
I'm laughing and crying because man, do I ever relate to this! I may have to do my own post and not grab yours. This is really a very powerful post, my friend. Yes, it's more positive than day-to-day life sometimes is. But people need to know that there are very happy and sweet and magical moments with these kids. And there are times when we simply don't know what to do next. I think one of the secrets to your excellent parenting is, you've accepted Noah's diagnosis without hanging that label around his neck and making him wear it like an albatross. And you've accepted Noah as he is, a beautiful, talented, annoying, loving, complicated, sweet little boy! Though he's not so little any more, right? And puberty brings a whole new set of challenges. But you've got the right ideas and you're doing what you know in your gut is the right thing, and you have a husband there to help (and hinder sometimes!), and you'll get through this just like you've gotten through all the other challenges. I'm going back to read your other entries, though I think I may have already read them, back when I was skulking. Thank you for writing this. I think it may be helpful to many here. Rated, of course. D
OK. I just read the other "umbrella" series. What a roller coaster ride you've been on! I appreciate your ability to write with such clarity about those emotionally-charged subjects. But you know what comes through, despite the terrible things that have happened? Your sweet spirit, your sense of humor, your intelligence in ferreting out answers and finding the right people to help--and your stubbornness: that you're going to see this thing through, no matter what! And your ever-hopeful attitude in knowing that Noah's going to be all right. I'm in awe of you!
I can’t even begin to imagine the rollercoaster your family’s been on. Thank you for the loving, heartfelt peek inside your son’s world.
I have an issue with this quote, "Finally one day she flat admitted she could not help him. This ought to be criminal." Why should it be criminal? It's better that a teacher admits she's ineffective than gives you happy talk while your son isn't improving or learning.

And I wonder if maybe this teacher's admission of failure didn't eventually lead you to Miracle Worker, in which case she did your son a huge service.
Malusinka - This lady was someone I was paying out of pocket in a "hospital" set up especially for kids with special needs. That reason alone tells me she should have known more approaches than one and that she should have eventually remembered trying to pick my son up was only going to make things worse.

But the "criminal" comment comes from another chapter in Tales from my Autistic Umbrella whereupon I asked this therapist if anyone else in the facility (Scottish Rite) could help and rather than checking it out or even pretending to, without batting an eye she said no. I find that hard to believe considering this is Scottish Rite we are talking about.

Also, it felt like the old "that's not my job" excuse. Typically the therapist will research the quirks (for lack of a better word) of their patient and either learn new tricks themselves or refer us to someone who can help.

This didn't lead me to the Miracle Worker. The Miracle Worker just happened to be the school teacher he was assigned to the following year. We got lucky.

For a full account of this story, you can click the chapter links at the end of the post.
As a speech therapist myself, I agree that the non-helper therapist was unprofessional! She should have gotten better training on how to deal with an autistic child. I had a child with fragile X who was also violent when he was frustrated. I was trying to build a relationship with him, and had gotten him to stop thrashing around by enjoying music together and repeating words he liked. Unfortunately, after about a month of sessions, his father was unhappy with me because I wasn't teaching him to "speak," and so he took him away.

I have another boy who I have been seeing on and off (due to parents financial problems). He has a toe fetish, and used to crawl around the waiting rooms trying to bite women's toes! I love him so much. last year his parents couldn't afford to bring him for the school year because their insurance company would not pay. Yet some insurance companies will pay for kids to have their lisps taken care of!!! This is why I don't have an AK-47.
What a beautifully told story AS. You are a wonderful mother and Noah is lucky to have you. I know it's had to be a massive struggle, but to your credit you have done so well.
Thank you for sharing this and I wish you, Noah and your family well. I guess hope is a reality after all...
Rated
I trust that all is well with you and yours.....
Ron - no it isn't but let's not go there lest another shit storm of utter bullshit, lies and hating pop up on the horizon. I've got too much on my plate to deal with infantile behaviors of some people so I shall deal with my issues in silence. Thanks for asking though and I will send you a PM shortly. You have been a magnificent friend through all of it.
Noah is lucky to have a mom like you, aside from the fpff factor, give him a hug for me. Nicely done!
Ann - you crack me up! Thanks for sharing those stories but I think if that father had just held out he would have seen the improvements he was looking for. You were reaching the child and that is the biggest step sometimes. For instance my son nuts up when a stranger starts talking to him - but it's not the typical shyness one might expect. There is a fire of raging anger inside him and if we do not escape the situation fast, or I do not find a way to tell the stranger that they are playing with dynamite, there is going to be a catastrophic explosion. That is the way our therapist was behaving - as if he were a normal child just feeling shy, she never tried to figure him out, but instead tried to bend him to her will. This can be done with a normal child but not so with disabilities of these sorts. You did a great job with that kid even if you were not able to finish it.
I have to tell you about one 23 year-old young man, Jeff, that I had working in my department at the hospital

I'm in mid-level management in health care, moving several times to aid in the development of my career. At the various places I've worked, I've always sought out ways to help with handicapped people, giving them places to work, especially autistic people due to their need to learn social interaction skills.

Jeff loved talking about world travel. He and I would eat lunch together, or he would come into my office and we would just sit back and talk about world events, travel, politics, etc.

I had some really old Time Life world travel books and I told him he could have them if he wanted. I mean, this guys eyes lit up like I was giving him a new Mustang or something.

Jeff responded; “Yes, I would love them (he stuttered pretty badly, so all his sentences would take a bit of effort, but man, you could see the excitement in his eyes), but you can't bring them in plastic bags. Platic bags will break with that many books in them. They'll probably need to be in paper bags, not plastic bags, or maybe a box, with handles on the boxes so I can carry them, but not plastic bags."

"OK Jeff. I’ll be sure to put them in a box for you."

Well, sure as hell, I couldn’t find them. I bought the set about 30 years ago. No telling where they went after the many moves I’ve made, but I kept trying for about three weeks until Jeff finally lost patience.

One morning, when I arrived at work, I unlocked my office, set my briefcase down, grabbed my coffee mug and turned around to go fill my mug with coffee. There’s Jeff about three feet away from me. I didn't even hear him come into the office.

“Where’s my books. You said you were bringing me books. That’s what you said; you did, you said that.”

“Jeff, I’m trying to find them. I’ve moved around a lot (hoping in my mind that he wouldn’t pick up on that and start asking why I moved so many times. You know the drill). As soon as I find them, they’re yours.”

“Well, where did they go?”

“I think they’re in storage Jeff.”

“You mean in public storage, or PODs?”

Chuckling to myself “I think they may be in the attic above my garage, Jeff. I’ll climb up there and take a look around this weekend.”

Jeff looked at me for a minute or so and said (remember, he’s stuttering pretty badly) well, if you’re going up into the attic this weekend, you’d better go on a quick South Beach diet. I think you might fall through and hurt yourself”

I couldn’t hear a word he was saying after that, I was laughing so damned hard.


I know you guys have gone through a lot and I’m certain there are more trials ahead, but I can tell you that the best is yet to come and it sounds as though Noah is in awfully good hands.

For those of you who don't know about autism, those "afflicted" with it are typically extremely intelligent, honest and straight forward and oh so very refreshing to be around.

Good luck with Noah, Apache
Thanks for such a comprehensive piece. Boy...what a process!

I don't have children but I believe wholly in the power of sports. I think they are redemptive - they can change everything. Your piece only confirms this for me.

This made me laugh out loud:

"Finally Noah got going in the right direction and the right fielder threw the ball to the left fielder because he looked like he wanted it."

Ha.....Ha...Ha.............
This was really uplifting. I'm amazed at what all of you came through, and I know that challenges remain. I admire the way you are able to focus us on the joy. And as always, I admire your strength and love.
You are a great mom. What a special kid Noah is. I loved reading about his reaction to baseball - I feel a great affinity for Noah, baseball was my thing to, my reason for being when I was that age. As a result I am the best friend of little boys everywhere, b/c while the adults drink beer or have dinner or picnic or whatever, I'm always outside playing a pick up game or hitting fly balls or pitching so they can take turns hitting. I love watching boys get all competitive and tiny-manly when they play. You captured Noah and the early struggles so well, it was hard not to be moved by his success, as if we were sitting right there in the stands watching him take his at-bat.

"It was one of those nutty T-ball home runs where the kids in the out field pick up the ball and look at it like, "What's this doing here," meanwhile Noah is running the bases backwards and the coaches from the other team are even steering him in the right direction." -- I loved this.
Excellent piece. Thank you for focusing on some of the "good" stuff. Noah is a fabulous little boy.
Oh this is beautiful! Rated and posted for my friends on Facebook.
"He always seemed so certain in his direction, as if he had somewhere specific to go and was determined to reach that destination with an air of right now to it."

I don't know why this affected my so much - it must be the mother's love coming through the way you describe him and what's happened. I wasn't on OS when you first did these, thank you for re-posting.

peece,
dj
I'm glad you could highlight some of the good things that have happened on this long road that you and Noah have traveled together. I have read your earlier work on this and understand somewhat better the very difficult challenge that this has been. You are to be commended for your love and for your fortitude.

God bless,

Monte
A magnificent story told in your capable hands. The ups and downs you have to go through just being a parent to a child without a set of special circumstances is enough to make one forget there are any positives.

You have my respect.
I've read all your other posts about Noah, I think, but like this one best because it goes through so many hurdles to get to the good stuff. There is good stuff, and it would be a shame for any parent to lose sight of it because of the difficulties. Some of the best advice I got regarding my own daughter was this: There will be good days. Make sure you enjoy them.
BTW, Savage. Jeff flipped off a particularly obnxious nurse one day too. Sound familiar? :-)
Apache, this is my first time reading about Noah as well. Kudos to both of you and especially for your sensitive and loving rendering of your's and Noah's story.
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