Increase Awareness: Let's Do Our Part!

In 1994, Autism occurred in 1 of every 166 births. In 2000-2002, it was 1 in 150. 2006 saw that statistic go down to 1 in 110, and just today the Center for Disease Control and Prevention (CDC)  released a very sobering statistic. The newest data (as of 2008) shows autism occurring in 1 of every 88 births.

1 in 88.

That statistic is mind blowing.  In the past ten years, that's a 78% increase. How do we stop that steep of an increase from happening again? Can we make it go away by curing it?  It's a tough nut to crack. Autism isn't something you can stop as it still isn't clear what exactly causes it. It's not a disease, so there's no magic pharmaceutical that's going to cure it.

So what can we do?

We can broaden our awareness. Know the warning signs, because early diagnosis is key. The sooner it's discovered, the sooner the proper services can be sought and administered. It is likely that with these services, the autism will have less of an impact on their learning capabilities and social skills in the long run, according to CDC Director Dr. Thomas Frieden. I know this first hand as Jordan has benefited tremendously from them.

Those of us without medical degrees and licenses that would allow us to diagnose and treat Autism can still help. We can get the word out. We can let people know that, though we can't see it, Autism is out there. Let's   all of us pledge to light it up blue this Monday April 2nd. If you can't light it up blue, wear your blue. Whether it's a shirt, a pair of socks, or your blue jeans. If you have puzzle piece jewelry, wear that too.  Even the smallest tokens can make a world of difference.

Here's the story on CNN:

http://www.cnn.com/2012/03/29/health/autism/index.html?hpt=hp_t1

Take the 2012 Pledge to Light it Up Blue on Facebook:

http://www.facebook.com/events/393143690696309/


And here's a little something I made, as Jordan's favorite movie right now is 'Rio'

Red Light, Green Light

You always want to believe that your kids are the best behaved kids on the block. They never do anything wrong and you never, ever have to discipline them. They are angels all the time, every time.

Yeah right.

Every child misbehaves, it's in their nature. It isn't always malicious. Most of the time it's harmless. 

"Stop jumping on the bed."

"Sit down on that couch!"

"Give that back to your brother. You have to share!"

But sometimes it isn't. Sometimes it's hurtful and can border on dangerous.

"Stop running in the house, you're going to trip and fall."

"Don't push your brother!"

"Don't throw that! You're going to hurt someone!"

After once, perhaps two times of yelling at a typical child, s/he will get the message that you mean business. No means no, and when I tell you to stop you'd better stop. With a differently abled child, you can run in to some serious road blocks. While Jordan has made huge strides in her comprehension skills, there are still limits in her ability to understand certain things. She doesn't quite understand that when we yell, it's not usually a good thing. She often laughs and runs away, thinking that what she has done is a joke and that she can do it again. We try to put her in her room, but all she ends up doing is screaming at her door and pounding on it until we let her out, more out of frustration than anything else. Spanking is out, and yelling never did anything but make us all upset.  Discipline has been an uphill battle in our house.

One night two weeks ago we were at the end of a particularly frustrating day with Jordan. She had just been plain old rotten all day: hitting and kicking her brother, throwing books and toys, and screaming at us when she wasn't getting her way. She spent most of her day in her room, because every time we let her out she would do something else defiant that would make one of us yell at her and the other send her right back to her room. I was sitting in the recline, literally pulling my hair out. I wracked my brain for hours over what we could do to get the message across of what was acceptable, and what was unacceptable behavior.

Then I remembered something I saw in her classroom. They had signs up dictating what was good behavior and what was bad behavior. The green sign had a list of positive behaviors, the red sign negative behaviors. It was brilliant! If it worked at school, it should work at home, right?  I immediately opened up the computer and started typing up my own lists of positive (green) and negative (red) behaviors, entitling them "I Am Being Green" and "I Am Being Red."  As I was writing, I remembered something from her therapy sessions: she responded to rewards. If she had incentive to do something, she might actually do it. So I devised a reward system. If she was misbehaving, she would be "Red" and would earn a 5 minute time out, usually in her room. If she was behaving, she would be "Green," and if she stayed "green" until the end of the night, she would earn a sticker on her chart for that day. If she earned 5 stickers by Saturday, she would get a special treat. (My initial requirement was 6, but John convinced me that was a little too much to expect from a four year old.) I had my mom print out and mount the signs, and beginning last week they became a part of our home decor.

We are in week two now, and so far, it seems to be working. Her behavior has improved dramatically, with fewer incidents of misconduct. She does not want to be red!  She insists that Johnny should get a sticker, too, so we have been awarding him one every time she earns one. Their treat the first week was donuts, and we have yet to decide what it will be this week. We'll see!


PS: Don't forget about Autism Awareness Day, Monday April 2nd! Wear your blue!

Words are like Weapons

"Words are like weapons, sharper than knives."

-INXS

The second you become a parent, that protective instinct kicks in. Your baby is your whole world and you would do anything to protect her. You're a mama lion, and you'll bite the head off of anyone that messes with your cub, directly or indirectly. I have found this even more true having a child with autism. As a parent of a differently abled child, you're on constant high alert.  You know the ignorance is out there, lurking in the form of a glaring stranger when your child stims to keep herself calm, or an uneducated youth making an insensitive comment.

This is the indirect harm I am referring to.  Insensitive comments can be very hurtful, even when your child is not within earshot.  This happened to me just recently. It was the beginning of the work day and my crew was milling about, waiting for the okay to start our work day. A few of the guys were joking around, calling each other names. One asked:

"Why do you call him that?"

to which the first responded,

"Oh, because he's [so and so's] retarded brother."

I didn't hear the rest of the conversation or the crude noises made afterward,  because at this point I was so angry I was seeing red. It may not have been directed at myself or at Jordan, but to me it didn't matter. Language like that is a direct insult to my Jordan Elizabeth and all  individuals like her. I took several steadying breaths, turned around and snapped at them to watch their mouths. There was a momentary stunned silence and a chorus of mumbled apologies, but the damage was done. Not only was I fuming, but I was also devastated.Why would they make such harsh, insensitive comments about people like my little girl? It chewed away at me for a few hours until I went to my boss and reported it, on the verge of tears. My boss, being able to sympathize with my situation, was very understanding. All involved parties were dealt with accordingly, which brought me a sense of satisfaction, but not a sense of closure. It still hurts. This leads people to believe that the developmentally or intellectually disabled (differently abled) are sub-human and not worth treating with respect. 

With the prevalence of autism, downs syndrome and other developmental and intellectual disabilities, it surprises me that people still use the word "retarded" so freely. And almost every time it's used, it's in a negative connotation. It's used to insinuate that someone is beneath you in lines of intelligence, and can't possibly understand because they are too stupid. The media is worse. In shows like "Family Guy" (which I find myself liking less and less) this word is depicted in the worst ways, showing in one episode an autistic child in a helmet and protective gear, slurring his words and petting Brian the dog too hard, causing Brian to bite him on the hand. It's meant to be funny, but in reality it is insulting and demeaning. The writers and creators of the show should be ashamed. I have met many people with developmental and intellectual disabilities, and they are the sweetest,  most pleasant people I have ever met and have the most positive outlooks on life. They are wise beyond their years, my baby girl included., and could really teach a lot of us a thing or two about personal conduct. 

Most of the time, when today's youth uses that word,  I hear "oh, they're young, they don't get it." or "they're just uneducated." in defense of their ignorant actions. Well, I am sorry, but those are just not valid excuses anymore. The resources available and coverage of all the charity organizations (Best Buddies, The Doug Flutie Jr. Foundation for Autism for example)  on the news  are plentiful, so there is no reason for anyone not to understand that the word "retarded" is hurtful, harmful, and should never  ever be used. Period. 

You see what I mean about protective instinct?

My little star!

Links:

www.dougflutiejrfoundation.org    The Doug Flutie Jr Foundation for Autism

www.bestbuddies.org                      Best Buddies

www.autismspeaks.org                   Autism Speaks

www.autism-society.org                 The Autism Society

Educate Yourself and Others!  April is Autism Awareness Month and Monday April 2nd is National Autism Awareness Day! I will be wearing my blue and my puzzle piece pin! Will you?

What Did We Learn?

Wednesday, January 4, 2012, 7:30 a.m. (driving home from work)

John: We have a problem.

Me: What do you mean?

John: Jordan hurt herself.

(cue panic mode)

Me:What?! How?! What did she do?!

John: I think she climbed the gate and fell. I was in bed and I heard a loud thump and then Jordan screeching. Now she won't let me touch her arm.


We keep the hallway gated off and lock it at night. The idea was to keep Jordan confined to her room with access to the bathroom while we are in bed. We didn't want her wandering around the house, getting in to God only knows what, and potentially hurting  herself. If we'd warned her once, we'd warned her a thousand times not to climb over the gate. We told her she was going to fall and get a boo boo. For a while she stopped, but then she picked up the bad habit again, only this time with unfortunate consequences.

I rushed home from work and found John trying to get Jordan to lift her left arm and bend it at the elbow. She was sobbing, completely unable to move her arm and repeating "I have a boo boo on my arm! I have a boo boo on my arm!" When I was finally able to calm her down, I got her to at least wiggle her fingers. She favored the arm, kind of dragging it around, and still wouldn't bend it at the elbow. I asked her where it hurt, and she pointed to her forearm. I didn't see any swelling or bruising, so I figured it couldn't possibly be broken. I was thinking maybe a sprained wrist or a dislocated elbow. I convinced her to sit with the arm on some ice while I called the school and the bus company to let them know she wouldn't be in, and my mother to ask her to watch Johnny. We were off to the doctor's.

Once we got Johnny settled at my mothers, I took Jordan to the sick clinic at her pediatrician's office. She was in good spirits, but very tired and still very much favoring her wounded arm. I reiterated the story from my husband to the on call doctor, who then examined Jordan's injury. He gingerly bent her arm, and she grimaced and whimpered.

"Unfortunately, I can't tell anything without a film."

We were going to need an X-Ray. Perfect. I started planning out in my head how I was going to tell her and how I was going to have to restrain her when the inevitable meltdown occurred. I took the orders from the nurse and Jordan and I proceeded to the radiology department at Jordan Hospital.  She cried a bit in the car because we weren't going home yet, but I soothed her by very calmly explaining that some other doctors needed to take special pictures of her arm, because her boo boo was on the inside. She sniffled and agreed, and bravely held my hand as we walked into the hospital.


We arrived in radiology around 10 a.m. and naturally it was packed to the gills. Knowing how little patience she had, I feared the worst as we checked in and sat down. But Jordan was an angel. She sat calmy by my side, as we read books, colored and skimmed magazines while we waited. I was so proud of her. 45 minutes later, give or take, they finally called her name and we followed the technician to the exam room. Jordan balked when she saw the size of the camera, but soft, soothing words from both the technician and myself help her to relax and she sat on my lap while the tech took the films.
Upon finishing, we were told to go wait in reception while a doctor reviewed the results. About a half hour later, the on call pediatrician called me in radiology.

Dr. Gaynor: She's fractured her ulna.

Me: Oh dear...

Dr. Gaynor: We usually don't see that in a fall like this. I'm going to call an orthopedist and see what they want to do. We'll give you a call back, hang tight.

Me: Okay, thank you.

I couldn't believe it. My baby had a broken arm. I felt horrible as I hung up the phone and looked over at her as she happily flipped through a book. I hoped it wasn't too bad as I returned to my seat next to her and waited for the next call. By noon time we were on our way home with an appointment in Duxbury to see an orthopedist at 2pm. After lunch and another round of ice on her arm, we were on our way to our third appointment of the day.

Jordan happily interacted with the staff at Plymouth Bay Orthopedics, telling them all about her boo boo and how she got special pictures taken of her arm. After a short wait, we went right into the exam room and carefully boosted Jordan up on the table. The doctor came in and explained to me that it was broken, and she'd need a cast up to almost her shoulder for four to six weeks. When she showed me the x-ray, my eyes immediately got warm and I had to choke back tears. I was figuring maybe a hairline fracture. Nope. This was a good, clean break. I felt terrible. I'm her Mommy, I'm supposed to protect her from things like this.  I mean, I know it wasn't my fault, it wasn't anyone's fault, really. She fell. Kids fall, kids break things. It happens.  Doesn't make me feel any better, nor does it make me blame myself any less.  She shyly picked out purple for her cast color, and sat very still while I held her arm and the nurse casted it. After another x-ray to make sure nothing moved, we were sent on our way with an appointment to return in two weeks for a follow up.

By 4:30 that afternoon, we had picked up Johnny and were on our way home after a whirlwind day. Daddy brought home Jordan's favorite dinner (chicken and french fries from McDonald's!) and by 7 that night she was yawning and ready for bed. As I was tucking her in, I repeated the question I'd been asking her all day:

 "What did we learn today, Jordan?"

  "I can't climb gates."

And she hasn't tried since.

My brave little soldier!

Links:

www.pmgpediatrics.com  PMG Pediatrics. If you're a parent seeking care for your child in Plymouth or the surrounding area, I will highly recommend this practice. All the time, every time.

www.pbortho.com   Plymouth Bay Orthopedic Associates. Good doctors, great staff.

www.jordanhospital.org  Jordan Hospital. They have never failed to impress me, every time I've been there.

Christmas Time!

     Okay, so I know I said I was going to be a better blogger. But this time, it wasn't my fault. My computer crapped out on me and I only just got it back last week. I lost precious blogging time through November and December and it totally stinks. So now I have to do the catch up!

     Where to start? Ah yes, Santa Claus. What a difference a year makes. Last Christmas, Jordan was frightened of Santa. We would walk by him in the mall and wave, but when asked if she wanted to sit with him, she would immediately balk and adamantly say:

"No, Mama! No Santa! "

     I'll admit, I was a little disappointed, but when it comes to choosing my battles, that is not one worth fighting. This year, however, we could hardly contain her. Due to my nutty work schedule during the Christmas season, our tree was up the first weekend of November. Jordan was giddy with excitement.

"Santa's coming, Mama! Santa's coming!"

"What does Santa bring you?"

"Toys!"

"Do you want your picture with Santa this year?"

"Oh yes, Mom!"

She could hardly wait for Santa to come to the mall. Every day she would come home from school and insist on listening to Christmas music, on WROR of course. ("Boston's Favorite Christmas Songs, Mama!") When he finally arrived after Thanksgiving, we took the kids to see him. I had to stand behind her in line and hold her back so she wouldn't jump the other kids in front of her. When it was their turn, she got a little nervous, but still went up and sat at his feet. She gave us a big smile, despite her brother's sobbing, and we got a fabulous picture!

Jordan was an absolute delight on Christmas Eve at Gammie and Gumpy's house. She was on her best behavior and played wonderfully with her cousins PJ, Malik and Nathaniel. She was absolutely enamored, however, with her cousin Ashleigh! She dutifully followed her Auntie Heather around, wanting to help with everything from wiping Ashleigh's nose (she had a cold) to changing her diaper.  Ashleigh thought Jordan was a riot, giggling, smiling and cooing at her older cousin. Jordan even helped tuck Ashleigh in for her nap, climbing the gate and following my sister and I upstairs to the pack n' play in Mom and Dad's room. She then patiently sat through dinner, mothering her cousins at the kids' table ("Eat your dinner. Finish your milk. Turn around, please, thank you!") and did great opening gifts afterward. We left Gammie and Gumpy's around 8:30 that night and she chattered the whole way home, in contrast to her brother who promptly fell asleep as soon as we pulled out of the driveway. When we got home, she helped us set out cookies and egg nog for Santa and went to bed like a good girl.

Christmas Eve at Gammie and Gumpy's

Auntie Heather, Jordan and Ashleigh!

She actually hopped the gate that morning (another story for another time)  and pulled hers and her brother's presents out while she waited for us to get up. She exclaimed when we opened our bedroom door:

 "Santa came, Mama!"

My crown matches Rapunzel's!

Peek-a-boo in her Princess hut!

Happy to open presents!

We all excitedly opened our presents, her favorites being her bean bag chair and her Rapunzel crown and necklace. We then went to Grammie and Gimpie's house, where we spent another 2.5 hours (not kidding) opening gifts. Johnny gave up after 45 minutes and took a nap, but Jordan perservered. She was showered with more Rapunzel gifts and other various toys,  and so many clothes between her and her brother that we were able to restock their drawers. She had a such a good time playing with her Grammie that by the time we got home, she was so tired she went straight to bed without  a fight.

All in all it was a fabulous holiday, and we hope that everyone enjoyed theirs as much as we enjoyed ours!

Merry Christmas, 2011!!

 Links:

Jordan's new favorite station, Christmas time and any time!

www.wror.com

The Tale of The Purple Witch and Count Johnny

"I want purple eyes, too, Mama!!"

"And pink cheeks?"

"Yes, Mama. I want purple eyes and pink cheeks!"

This was our conversation as I put my make up on before the kids' portrait session two weeks ago. Jordan was super excited because she was getting her picture taken and she got to see Gammie and Great Grandma. She saw my purple eyeshadow and my blush, and decided that she must have it too. I didn't see the harm, so I told her to sit on the toilet seat and close her eyes. She followed directions beautifully, and sat very still with a big grin on her face as I applied minimal purple eyeshadow and pink blush. When finished, she flew into the the living and flung herself into John's arms, shouting "Daddy I have purple eyes and pink cheeks!" She was so proud of herself for being a big girl and wearing make up, and I was proud of her for listening and following directions.

When we arrived at Sears, she paraded in ahead of Johnny and I and ran to my mother, who I had brought in for extra support to avoid a repeat of last year's meltdown. We quickly dressed both kids in their costumes and led them into the studio. She immediately tensed up, and I felt my stomach clench, sure that we were on the verge of another meltdown. I chanted over and over in my head as we tried to calm her:  Not again. Please, not again. I really want this to be a positive  experience. Please, not again!

That's when she threw us a curve ball and relaxed. The photographers were very patient and attentive to her, which helped her realize that this wasn't so bad, and she was going to be okay. They played games with her and earned her trust, easing her qualms, as well as mine,  even further. Between them and my mother, this session suddenly became a breeze.  Every time they snapped a picture, she ran to see how it came out and high fived every one, congratulating not only them but herself for a job well done. She even tried to soothe poor Johnny, who, in sharp contrast to last year, wailed and sobbed through the whole sitting. (In his defense, he was recovering from a double ear infection and was rather grumpy to begin with!)

What a difference a year makes! I was so proud of Jordan for being able to calm herself down long enough to listen, and for her ability to understand that she was okay and this was safe. She has changed so much since last October, and gained a wealth of new skills from being in school and interacting with typical peers. She has made leaps and bounds, and continues to grow stronger and smarter each and every day!

Trick or treating was a hoot. My brother Patrick and I herded Jordan and PJ, along with Malik, Nathaniel and Rosa around his neighborhood gathering treats. Jordan walked up to each and every house, proclaiming 'trick or treat' and holding out her pumpkin for candy. She always remembered to say thank you, and held my hand for the entire walk without protest. She even played Safety Patrol and told the boys to "Slow down!" and  "Use walking feet!" when they would run ahead up the yards and driveways.  Count Johnny and Pirate Princess Genevieve only made it to two houses, as it was quite cold when we went out. With her expanded comprehension and listening skills, Jordan continues to progress, and each year is better than the last!

That's our tale for today! As we jump into November and the unofficial start of the Christmas season, we begin the wait for Santa in our next episode!

Here's the results of our photo session and a few snapshots from trick or treating!





Getting Them Help is Keeping Them Safe

The 9 year old boy who disappeared in New Hampshire last week, initiating a massive search effort on the part of police only to be found under a neighbor's bed, has gone missing. This is the third occurrence this year.  Judging from photographs and video from the last time this happened, it appears that he thrives on attention. He was elated when he was found and appeared to enjoy riding in the police car. One could assume that he is doing this for attention.

Everyone is quick to blame the parents. Why aren't they watching him? Why do they let this happen? They need to watch him better. The worst I've heard is that the parents are neglectful, irresponsible, and that DCF should step in. Statements like these are easy to make when you're outside of the situation. I don't believe that this is a case of neglect, nor are the parents irresponsible. I think there's more involved than the media is letting on.  I think there may be something awry with this little boy.

That is what is not being addressed:  his mental well being. Has he been evaluated by a neurologist or pyschologist? Is there a developmental disorder? If that is the case, he may not fully comprehend the consequences of his actions. It could all be a game to him. He could be playing hide and seek, and searching out the best spot so that no one will know where to find him and he wins. One can see the excitement on his face if you were to look at footage from last week. He was thrilled when he was found, as most children are when they are sought out in this game. Children on the spectrum often  have no sense of self preservation, and cannot discern the difference between what is safe and what is dangerous.  This could also be the case. To him, he could just be taking a walk. He doesn't understand that going out on his own is not safe and that he could get hurt.

Jordan exhibited similar behavior when she was first diagnosed with ASD. She did not fully grasp the concept that inappropriate behaviors, like screaming for what she wants or throwing things when she's upset, were not acceptable. She also didn't understand that she could get hurt if she went running down the stairs or jumped on her bed.  She laughed like it was a big joke, and would continue to push the limits. It took months of  extensive therapy and now almost two full years of school to open up her comprehension skills to get her to understand what is right and what is wrong, and what is safe and what is dangerous.  Even now, she's still learning and it is often difficult to communicate the difference to her.

If there hasn't been one already, there needs to be an evaluation completed on this child to see if he is on the spectrum. If he is, then the parents need to take steps to keep him safe. The first thing they need to do get educated. They need to get in touch with mental health professionals and Autism experts and learn ways in which they can really help their son. GPS bracelets, home alarms, and constant supervision will not be enough if the parents can't help the child to understand that what he's doing is wrong.


Here's the story:

http://www.thebostonchannel.com/news/29582256/detail.html


Remember, there's always help. Here are some websites with more information:

Autism Speaks:  http://www.autismspeaks.org/

The Autism Society of America: http://www.autism-society.org/

The Doug Flutie Jr Foundation for Autism: http://www.dougflutiejrfoundation.org/

Children Making Strides: http://www.childrenmakingstrides.com/