Category Archives: ASD PDD-NOS

Autism Spectrum Disorder; Pervasive Developmental Disorder-Not Otherwise Specificed

Why I Am Running

Running, racing and raising $$ makes me feel like I’m somehow making a difference. Last year I ran my first half-marathon to raise money for Leukemia & Lymphoma Society in memory of my dad who died in August 2010. This year, I’m running and raising $$ for Autism Speaks in honor of our son, Shane, who was diagnosed with an Autism Spectrum Disorder (ASD) in November of last year. I’ll be competing with Team Up! with Autism Speaks at the Tower of Terror 10-Miler in Orlando, FL on September 29, 2012. As much as I’m looking forward to raising $1,000 per mile, I’m also excited about meeting other families who are running to raise funds in honor of someone they love and whose lives have also been touched by Autism. Please take a look at my page and consider making a tax-deductible donation to support my fundraising efforts or pass it along to others who might consider it, as well. No donation is too small…every dollar counts! With a GOAL OF $10,000, I’m going to need a lot of help. Smile

P.S.-The monkey in the pic on my Autism Speaks page is Shane when he ran his first race a couple of weeks ago for Miles Against Melanoma (62 feet). Looks like I may have a new running partner soon!

http://events.autismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1024092&lis=0&kntae1024092=F9B4235241EA4EAC84E3AB96F3DA1ABB

San Diego 2012

Me (second from left) with my very special LLS Team in Training
peeps after the San Diego Rock ‘n Roll Half-marathon

I’ve Run Out of Ideas

While I usually try to be funny and entertaining, the last couple of weeks have been especially difficult and full of emotions…inadequacy, anger, sadness among them. If you’re looking for a happy blog about rainbows and unicorns, you should stop reading and go elsewhere. Here’s the problem…I am a self-diagnosed perfectionistic control freak with Obsessive Compulsive Disorder, ADD, future member of Overeater’s Anonymous and Lazy Ass Couch Sitter Club. I feel like I’m losing my sense of humor which is probably my strongest coping mechanism. More and more often, I find myself less likely to laugh about things and more likely to cry instead. No clue why (menopause?). I have a birthday coming up which brings me closer to 50 (ouch). I have a daughter who’s is graduating in June and heading to college. I have a little boy who struggles to “make good decisions” at school and at home (no matter how hard he seems to try). Maybe those are reasons. Realizing that things are happening that are beyond my control probably doesn’t help.

My daughter and I are very close. We have a great relationship. One that I wish I had with my mother. Jessica has professed that I’m her best friend (although I think her boyfriend has weasled his way into that spot Smile with tongue out). The realization that she will be leaving home soon is really hitting me hard. It seems like only yesterday that she was dressing up the cat and pushing her around in a stroller or marrying our golden retriever. I’m not ready for the next stage of life and our relationship with her living 3 1/2 hours away. I’d be lying if I said I was ready. I think it’s going to take a long time for me to be ready. I can’t even hear someone ask her about college without welling up in tears (she looks at me everytime waiting for waterworks). But, I know that we have done a good job raising her. She’s a great kid. She’s beautiful inside and out, smart and ambitious. I’m prouder than anybody has a right to be. She’s going to be okay.

Shaney has been struggling at home and at school for a while now. He’s decided that he’s pretty much the “decider” in most things being asked of him. He’s as stubborn as a mule. At school, he sometimes refuses to do his work, stands up in the chairs, turns his desk over, cries, but what gets him into the most trouble there is potty mouth. He insists on yelling out BUTT and STUPID. I’m sure there are others (like the special word he called out when the teacher asked for words beginning with “F”). His teacher came up with the idea of putting tally marks on the white board in class to show him how many times he said inappropriate words to make him more aware. This week, we decided that I would give him two coins each morning. He would be allowed five tallies before having to surrender a coin. If he got into the car at the end of the day and kept one coin, we would do something extra-special. The first day he got in the car with both coins! YAY (computer time)! The second day, two coins! YAY (small toy and DS)! The third day one coin! YEEHAW (computer time and Happy Meal)! The fourth day…no coins! BOO (nothing electronic :/)! No coins would mean that the child stubbornly used ten potty words in a six hour period. To be honest with you, I don’t care if he says BUTT. I’m not particularly fond of STUPID. And STUPID ASS is definitely not cool. But, since there are only three boys in his class who pick up each other’s bad habits and feed off of each other’s energy, I get it.

Last night when I was trying to tuck Shane into bed, he refused to clear his bed of the mountain of toys, pick a book out for us to read and just stop being a jerk, in general. After I asked several times (okay, told him several times), I got no help. So, I said I could not read a story and sing lullabies if he didn’t get ready. That brought the onslaught of tears and a temper tantrum. Once he settled down, I sat on the bed and said, “I’m sorry you’re sad and upset. I’m trying to help you. What can I do to help?” From this adult trapped in a little boy’s body, I hear, “I DON’T KNOW, JANET! I’VE RUN OUT OF IDEAS!” That made me cry…and laugh, he laughed. Maybe, just maybe, my sense of humor is still here. It might be under a layer or two, but it’s there. I think it’s going to be okay.  I’M going to be okay.

You’re Not My Friend!

When you’re a parent, there are days when there isn’t enough wine, chocolate, beer, Xanax in the house to help you not pull every hair out of your head. Days when no matter how hard you try to be patient, nothing works and you turn into a raging lunatic (well, I do, anyway). Days when I am way too hard on myself for not being the perfect parent (whatever the hell that is) which results in crying and feeling worthless. And, when you have a kid who is defiant and has a difficult time with changes, transition and lack of routine, it makes spring break seem like a vacation to Hell.

Several days this week, Shane has had multiple meltdowns and temper tantrums. Let’s brush your teeth and hair…NO! Time to take your medicine…NO! AND YOU CAN’T MAKE ME! Time for lunch…I DON’T WANT TO EAT. IF I DON’T WANT TO, I DON’T HAVE TO! Let’s go see a movie…I’M NOT GOING TO SEE A MOVIE! We’re going to the museum…I DON’T WANT TO GO TO THE MUSEUM TO SEE THE STARS! Let’s go to Carowinds…I’M NOT RIDING ANYTHING EXCEPT THE SNOOPY MOON, NOT EVEN THE CAROUSEL (he wasn’t lying about that). So, I bargain, praise, bribe, provide positive reinforcement, take away privileges, send him to “the chair” to think while screaming and kicking the wall (him, not me). These are all the methods we’ve been taught to do. And, what’s funny is that Shane’s right. How do you make a six year old get out of “the chair” to finish a task because I’m on a schedule when he’s bound and determined to sit there because it’s not HIS idea to get up? Truth is, I can’t “MAKE HIM IF HE DOESN’T WANT TO.”  And, so it goes…I’M NOT YOU’RE FRIEND! I’M GONNA SAY BAD WORDS! I DON’T WANNA STAY HERE WITH YOU!

This has been the first extended break since Shane started Cyzner Institute in December. When he’s in school, the difference in his behavior is insane. He’s a different child. It’s difficult for me to tell what part is autism and what part is just being a brat at home. Obviously, the routine in the classroom helps him stay in control. This week has made me realize how fortunate we are to have the resources and benefits that are available to us. The fact that he has perfect days when he’s in school let’s me know that the therapy is working. Although we’re working with his teacher, therapists and psychologist to learn ways for us to help him manage his frustrations, this week has taught me that I still have a VERY long way to go with my education. We’re fairly new to the world of autism so are still navigating and finding more information daily to help put it all together. We are a family that’s always been spontaneous…spur of the moment movies, trips, restaurants, amusement parks, etc. I have to come to the realization that as much as I think things can be “normal” (whatever that it is) they’re not going to be. At least, not yet.

When things settle down from each instance of tantrums from a six year old amidst tears and hugs (from me and him), I hear, “I do wanna be your friend, Mommy. I love you. I wanna stay here with you forever and my whole wide life, Momma. You’re my favorite. You’re the best Mommy ever.”

And, at the end of the day when the last line of the lullabies has been sung, I whisper, “Always remember and never forget…” the sweetest, most adorable brown-eyed boy I know chimes in, “that Mommy will always love me, no matter what….even if I’m mean. Right, Momma?” Right, Shaney…no matter what. All is well in the universe. For now, anyway. There’s always tomorrow. Smile

We did figure out a way to ride in the car with the top down this week…put on goggles to block the wind and sun! 🙂

Weary Warriors

Therapy is an important part of life for a kid on “the spectrum” and their family, as well. Shane receives several different therapies throughout the week. In his day school, he receives intensive Applied Behavioral Analysis (ABA) therapy for 4 hours per day, 5 days per week. Basically, ABA therapy is finding a way of motivating the child and using a number of different strategies and positive reinforcement techniques. In addition to ABA therapy, he has music therapy three times per week and sees an Occupational Therapist once per week. He has made leaps and bounds of progress in social situations and self-soothing techniques. He has made friends in each setting and brings surprises to his partners-in-crime and they give him small trinkets, in return. They’re simple things that mean a lot; a ballerina ornament, plastic egg with rocks, a green toothbrush, rings from gumball machine, plastic frogs, spiders and tiny cars. All of these are tremendous strides since anyone touching Shane’s things would normally have resulted in a kicking, throwing, temper tantrum. In fact, he thought that every kids toys should belong to him “forever and his whole wide life” which resulted in no play dates, ever. We were too afraid of the freak-outs and are still are not comfortable, although we’re almost there. 🙂

At each office, I watch the kids come and go. They have various degrees of needs and characteristics ranging from those who are severely autistic who need any and every service they can get to “normal” kids needing only speech therapy. Some are in wheelchairs and can’t walk, some refuse to get out of the car or get back into the car, throw their backpacks on the ground and refuse to get up, others are running around the waiting room because they can’t sit still, some are making odd noises, some run to their favorite seat before anyone else can sit there. Many carry cell phones, iTouches and iPads, watching the same video over and over for constant entertainment. During the time the kids are in therapy, the parents and caregivers surf the web, knit (I’ve seen a ball of yarn turn into a whole sweater), do paperwork enjoying their every minute of their hour of solace. I see the same ones weekly and wonder how they do it, where do they find the strength to care for someone who demands so much of them every minute of the day…they weary warriors.

Each week, Dave* leads Sam* into the office with a gentle sway and soft words. He has dark circles under his eyes and looks like he could collapse at any moment. Sam is severely autistic and commands every minute of his father’s time. He is non-verbal, walks with a shuffle and doesn’t really communicate in an effective way. He carries an iTouch and watches the same videos repeatedly. Each week, when the therapists come for Sam, taking away his iTouch for less distraction during his session results in a noise that is difficult to describe. Once Sam has left with his therapists, you can see Dave breathe a sigh of relief.

We had never really spoken before, but on this occasion he shared part of his journey with me. At six weeks of age, it was apparent there were problems with Sam. He stared blankly, cried continuously and responded to no ques. At ten, Sam has the developmental capacity of an 18 month old baby, but is the size of a 15 year old boy. Dave met a school administrator somewhere along the way who assured him that they could get Sam into a public school program in Charlotte that offered the specialized services he needs. So, he sold his prospering company in NY and relocated to Charlotte. I sat and listened, taking in all the information I could. When Dave talked about Sam, the love beamed from his eyes. He smiled when he told the story about a barber in town who cuts kids hair when they’re laying on the floor in between playing “Red Light/Green Light.” I could tell that a good sense of humor was part of what was keeping Dave on the sane side of the mountain.

When Dave’s grandmother died, he and Sam went to the funeral. The minute the director of the funeral home saw them walk through the door, he directed them to the “children’s room.” Dave said they didn’t want to go to a separate area and would be joining the rest of the family. As always, Sam had his iTouch in hand. He wouldn’t wear headphones so Dave turned the volume down, but Sam just turned it up. He watched his video and found his favorite scene, rewinding it to the same spot over and over again. So in the midst of tears and sorrow, the guests heard special music playing during the funeral service, the Cowboy Dance Song from Elmo’s World: The Wild, Wild, West. Through the tears and laughter of the guests, Dave knew that his grandmother wouldn’t have wanted her funeral service to be any other way.

Dave’s story is inspirational to me. Each evening when I climb into bed wondering where to find strength for the next day, I think of Dave and others like him. As exhausted and overwhelmed as I feel at the end of the day, I know that my challenge is nothing compared to theirs. They are so weary, yet so strong with such courage, tenacity, love…they are true warriors.

“Perhaps I know best why it is man alone who laughs; he alone suffers so deeply that he had to invent laughter.” –Friedrich Nietzsche

*Not their real names

Beautiful Boy

There are many days when my heart breaks because I feel like I can’t protect Shane from a life of frustration and being placed in difficult situations that he’ll have to learn to navigate himself. It’s out of my hands. That’s a big admission for a self-confessed control freak. I’m doing all I can which is to stand by his side and get all of the professional help that’s available to us. I don’t want him to be ostracized because he hasn’t learned how to always use kind words, share, take turns, actually “play” and talk with a friend instead of just being in their presence. His new teacher says that because he’s so loud and never stops moving, the other kids at school are a little leery and generally steer clear of him. So even kids “like him” aren’t sure how to include him. I don’t want him to see the weird looks we get from adults who are perfect and have perfect kids (according to them, anyway). The world is cruel. It’s their loss, not his. He’s an awesome kid. He doesn’t seem to notice the looks. Guess that’s my hang-up, not his.

At the playground yesterday, he stayed away from any play area with kids. He found a row of swings empty except for one baby. He hopped up on one. I was there to push him, but there was an elderly lady standing there pushing her granddaughter. I asked if he wanted a push. He said no and turned to the lady. He said, “My name is Shane. I’m 6. Do you want to be my friend? Who are you? Linda? Okay, Linda. Now I’m your friend. Can you push me?” She spent the next 15 minutes swinging him. I stood back and watched. Thank you, kind stranger. On the way back to the car, I tried to hold back my tears but couldn’t. Shane saw me and said, “Mommy, I just made a new friend! She liked me! Are you crying happy tears because I made a new friend, Mommy?” We got into the car, he hugged me and climbed into the back. Be still my beating broken heart. Thank you for being kind to my beautiful boy, Linda…my beautiful, beautiful, beautiful, beautiful boy.Red heart

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Beautiful Boy
by John Lennon

Have no fear,
The monsters gone,
He’s on the run and your daddy’s here.

Beautiful,
Beautiful, beautiful,
Beautiful boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It’s getting better and better,

Beautiful,
Beautiful, beautiful,
Beautiful boy.

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we’ll both,
Just have to be patient,
Yes it’s a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans.

Beautiful,
Beautiful, beautiful,
Beautiful boy,
Darling,
Darling,
Darling boy.

“He’s Just a Two Year Old Boy.”

Shane was a delightful baby, full of laughter, smiles, love. Starting at around two years of age, we began to see signs that something wasn’t quite right. There were incidents of aggression, severe meltdowns with no obvious cause, hitting, throwing chairs, etc. I had to go the emergency room twice from injuries resulting from physical aggression, once for getting hit in the ear with a rock and again for a scratched cornea. He even broke his time-out chair! Open-mouthed smile  He seemed so happy but switched moods in an instant…like Dr. Jekyll and Mr. Hyde.

In an effort to put him in situations where he would get more socialization, we enrolled him into the half-day program at the YMCA. After many phone calls from the school to report incidents of hitting, biting, throwing chairs and fits of rage, he was deemed “not a good fit” for their program. Even when we went to the gym to work out and put him in the childcare for less than an hour, we were called for the same reasons.

Bound to get him into some sort of a program, we found another preschool where the teacher seemed to be the right fit for Shane. She was patient, persistent, kind and he adored her. He still continued to have outbursts, but she used tactics that seemed to help him calm down. I still received phone calls and had to pick him up several times. But, the school made a huge effort to help develop a plan that would work for him and help him cope with a stressful/different environment.

A couple of months after he started his new preschool, his teacher called and said, “I think Shane just had a seizure.” Her brother was an epileptic so she was familiar with signs to look for. We had seen instances of him staring for what seemed like a really long time. It was usually after an outburst and we assumed he had just worn himself out (I would been exhausted if I threw fits like that! Open-mouthed smile). The next time we saw it happen, we called his name and he didn’t answer nor did he blink or respond in any way. Although it seemed like forever before he responded, the spells really only lasted 5-7 seconds.

We took him to the pediatrician thinking the switching of moods so quickly might have something to do with diet, seizures or something else not obvious to us. We just knew that whatever was going on was not “normal.” Our pediatrician dismissed our claims by saying, “He’s just a two year old boy.” She obviously wasn’t listening when we described the extent of his daily behavior. She suggested that we make sure he had something to eat every couple of hours (yeah, that’s it…we were starving him :S) to see if spikes or drops in sugar levels could be affecting his behavior. No tests were conducted. We left feeling totally defeated but knew that we were strong parents and would figure out methods that would work.

The disruptive behavior continued to escalate. We finally made our way to a pediatric neurologist. It was discovered that he had an arachnoid cyst on his brain in an area that could cause seizures. We were sent to a neurosurgeon who advised us that it was the type of cyst that is slow growing and not likely to ever cause a problem. We were told to get new MRIs every two years to make sure it isn’t growing. Based on history of staring spells, he was placed on medication for seizures. Since starting the medication two years or so ago, we have only seen a few other incidents of the staring, but the aggression, outbursts, etc. continued.

During all this time, he was never able to have “real” play-dates because he had major social issues with other children. We felt really sad and sorry for him and hoped for the best every time other children were around. He became easily overwhelmed, frustrated, hit other kids (not with ill intent), had major meltdowns, then withdrew. He preferred going to a corner and playing alone. He had invisible friends that he preferred to interact with and whispered to them while everyone else went about their business. Any new situations and changes in routine were too much for him to handle. He covered his ears when the vacuum came on, ran out of the bathroom when the toilet was flushed and screamed in public restrooms when the hand dryers came on. Certain stores and restaurants instantly caused meltdowns for no obvious reasons. We got the “looks” from other shoppers whose children must be perfect (screw them, by the way). That made it worse and made us feel even more like total failures as parents.

In August 2010, he started kindergarten at a public school. Given our history, we crossed our fingers and hoped for the best. Needless to say, it didn’t go very well and we removed him resigning ourselves to the fact that he would have to be in another learning environment. We just didn’t know what.

We desperately searched for answers and after a series of evaluations with a child psychologist, he was diagnosed with an Autism Spectrum Disorder (ASD); specifically Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Attention Deficit/Hyperactivity Disorder (ADHD). Although it was a swift kick in the stomach to hear the word “Autism,” it explained a lot and gave us many answers. But, more importantly it opened doors to resources we did not have before. Microsoft has benefits unlike any other and has allowed him to get into a program to address his specific needs with intensive Applied Behavioral Analysis (ABA) therapy.

Even with the challenges, we’ve experienced more joy in our lives because of Shane. We are thankful everyday for the alignment of the stars that brought him into our lives. He makes us laugh daily. He is a sweet, gentle soul. His innocence amazes me. He has the longest eyelashes most girls would kill for and beautiful brown eyes to match. He has a fabulous imagination, tells the best stories (he won the “Best Storyteller Award” at school), offers enlightening insight and views on life, runs outside in his underwear to greet the pizza delivery person, embraces things he’s afraid of (like zombie babies), gives the best hugs (even to strangers) and is beautiful inside and out.

I’m done writing about the history and events that got us here today. It’s boring for readers, but doing so has been therapeutic for me and  I hope helps create more awareness of ASD/PPD-NOS/ADHD. It is estimated that 1 in 100 children have ASD. On average, it is 4 to 5 times more likely to occur in boys than in girls. It’s an epidemic, people!

http://www.cdc.gov/ncbddd/autism/data.html

Now, on to the fun stuff which is sharing stories about his little quirks, creativity and other things that keep us laughing. Get ready to meet the REAL Shaney P Robinson in all his glory!

Speaking of Shaney in all his glory: Meet the nekkid cowboy!

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Smile