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/

A Year in a Day

I am such a bad blogger. I should have been updating regularly,  but as I was just discussing with both my husband and my best friend, I started this blog going in to the worst time of year for me: the Holiday Season. Which, in retail, reigns from the end of September until the first week of January. It's just one busy week after another, and then your shift changes and you're working all sorts of crazy hours. But time wasted on excuses is time taken away from what's important, and that's the subject of this blog: Miss Jordan Elizabeth!



Christmas day with Grammie



Christmas was a joy in our house! The kids and I left "reindeer food" on the porch and cookies and milk for Santa. They were pleasantly surprised when they woke up Christmas day to find the reindeer food gone and that half the milk and cookies had disappeared! Santa had come!! Jordan had fun opening her presents and helping Johnny open his. We enjoyed a quiet day at Grammie and Gimpie's where the kids were showered with gifts and had an overall pleasant day!








Johnny's Christening





The future Joan Jett!



January brought transistion into a new classroom for Jordan. We really thought she was going to have a tough time and the previous sleep interruptions would creep up as they had with prior changes (Johnny coming home from the hospital, and subsequently sharing her room). But she did surprisingly well. She was nervous the first few days, but by the end of her first week there she loved her new teacher (Miss Melanie)  and new friends.  Her speech began to blossom even further as she picked up new skills from her typical peers. She conquered the potty beast and we finally got her out of pull ups! She had a few accidents as she learned how to both pee and poo on the potty, but she eventually got the hang of both and has been doing great since!!



 





 

Easter



Sitting pretty!



A cold, snowy, uneventful winter led to quite an exciting spring for us, both good and bad. Jordan's newest cousin, Ashleigh Noelle, was born on May 4th. She was very excited to learn of her arrival and loved showing people pictures of 'Baby Ashleigh.' She can't wait for her Aunt and Uncle to invite her and Johnny up to meet and play with Ashleigh. Unfortunately, her Gumpy also suffered a minor stroke. It was a scary time for us, as he had to undergo surgery to remove a clot in a major artery. In that time, we taught Jordan to pray for Gumpy and how to play gentle while he was recovering. Jordan adjusted well to this change in her play routine with him, but they still enjoyed their walks, which were instrumental in helping him recouperate. She loves walking with Gumpy!!





Super short and sassy!



In the pool with Gammie

July brought Jordan's first haircut! We went to Auntie Pam's house and she did phenomenal. We gave her a drink and put on her favorite movie and she sat perfectly still while Auntie Pam cut off over 3 inches of hair! She didn't complain or twitch once, and didn't even acknowledge the scissors.  We also took a vacation to the family beach house, where Jordan was also on her best behavior. She slept like an angel and really enjoyed splashing in the ocean and playing in the sand! And of course, what's a summer without a trip to Gammie's pool? :)

Beaching it with Johnny!



Jordan and Miss Melanie



Back tracking a little, Johnny turned one at the end of May, and in June, Jordan completed her first year of preschool and celebrated her fourth birthday! She picked up a plethora of new skills in her time in Miss Melanie's class, including learning to write her name! She made significant progess on her IEP, and this year we are working on kindergarten preparedness and honing her focus, while keeping much of the same goals as the last one.  There was a bump in the road with the transition between the end of the school year and the beginning of summer school, as well as the transition from summer school into the beginning of the school year in September. The latter was worse than the former, and both involved her sleep patterns. She began kicking the door and screaming at night. We tried putting up an expansion gate, and she snapped in half by kicking it. She did the same to a wooden tension gate, until we finally had to buy a heavy duty metal walk-through gate that has seemed to do the trick. She no longer gets up at night, and when she does, ignoring the behavior shortens the length of the fit and discourages further episodes. **Knock on wood,** we haven't had a major occurrence since the beginning of September!

Smiley girl on a sunny fall day

The first month of school has been productive. Jordan is making strides on her IEP: She can answer many "wh" questions (who, what, when, where, why) appropriately, excels at writing her name, and enjoys matching and math games. We took a field trip to the fire station a few weeks ago, and she chatted the whole walk down from the school She was initially afraid, but after talking to a firefighter, she calmed down and even climbed on the engine. She has formed a bond with a little boy named Kevin. Kevin is very nervous and tends to get a little anxious, but as soon as he sits down with or starts to play with Jordan he relaxes. Miss Melanie reports that she tells Kevin that "It's okay" and "Don't cry, it will be alright," and that she has really helped with his transistion into the classroom.  Everyone at school knows and loves Jordan, even the school receptionists! She has really become a social butterfly!

And here we are at the end of October. We are approaching Halloween, which Jordan is very excited about. She's going to be a witch this year and even picked out a trick or treat pumpkin! We have scheduled another portrait session for this weekend, which I am hoping will go better than last year. Jordan has a better understanding of what is going on and is much easier to communicate with, not to mention we are bringing Gammie and Great Grandma along for extra support. Let's keep our fingers crossed!  Happy Halloween, everyone! Halloween portraits and trick or treat fun in the next post!

 Here's a few of Jordan's new favorite movies, just for fun!:



A must watch, almost every day!




She loves Minion




She calls this one the 'Punzel' movie




 







She likes them all, but LOVES Toy Story 2!



2010: The Year of Progress!

So I went for a visit to Jordan's classroom a few weeks ago, and I was absolutely floored by how well she is doing. At this time last year, she spent most of her time communicating with us through jargon and minimal sign language. Frustration ran abundant in our house, and most nights John and I would be pulling our hair out just trying to get her to stop screaming and start listening. What a difference a year makes.

Jordan was the most bubbly, talkative child in class. She participated in all the songs, including the ABC song, the Days of the Week song (cleverly sung to "The Addam's Family" theme. I'll include it at the end!), and her most favorite "Head, Shoulders, Knees and Toes." (To which she could do all of the body motions!) She helped pick out another song to sing where all the kids got up and pretended to be airplanes.  She was helpful to the other students, showing them where to sit and how to wait when circle was over and it was time for snack. Her requesting skills have improved phenomenally, so now instead of saying "snack!" when she wants to eat, she can ask me "Mommy, can I have snack?"  And she can say it clear as a bell! No more jargoning and little to no echolailia (repeating.) When it was time for recess, Jordan waited patiently for her turn to get her coat, and even helped her little friend Nick by tapping him on the shoulder when his name was called before hers.

Her teacher feels that it is time for Jordan to move up from the ASD class to the integrated class, that being the class with ASD children and typical children.  Now that I have seen how far she has come and how well she is doing, I feel the same way. The kids in her class are now where she was last year, and keeping her in that class would only hold her back. She is ready to progress and as much as I love (and she loves!) her teacher, it's time to let her move on and move up! We have a parent teacher conference next week, and I think we will set up an IEP meeting so we can get this ball rolling!

Now, we wait for Santa. Miss Jordan is super excited about Christmas, which warms my heart because she couldn't even say Christmas let alone acknowledge it last year. She knows that Santa is coming and that he's going to bring presents for her and Johnny. She turns the tree on when she gets up and talks about Christmas and "The Jingle Bell Song" every day. I can't wait to see her face when she gets up Christmas morning!!

Thanksgiving Day!

Playing with Johnny!

Daddy and Me

With Daddy, Johhny, and Uncle Josh at Nana's Christmas Party

Playing piano with Corey

With Carly and Auntie Janice at Nana's

The cutest little girl!

Being a ham!!!

_________________________________

And, as promised, The Days of The Week Song  (to "The Addam's Family" theme)


Days of the week
**snap! snap!**
Days of the week
**snap! snap!**
Days of the week, days of the week, days of the week
**snap! snap!**
There's Sunday and there's Monday
There's Tuesday and there's Wednesday,
There's Thursday and there's Friday
And then there's Saturday.
Days of the week
**snap! snap!**
Days of the week
**snap! snap!**
Days of the week, days of the week, days of the week
**snap! snap!**

__________________________________________

cute, huh? :)

It's Never What You Expect

You can't plan for things like this. You don't get pregnant and count on having a special needs child. It's an unexpected turn of events that you have to change your whole life for. We were taken aback with Jordan's diagnosis at 30 months, and weren't quite sure what to do. But with the help of my mother, who has been and continues to be a wonderful resource and the staff at The Kennedy Donovan Center, we got Jordan hooked up with Children Making Strides and into Applied Behavioral Analysis (ABA) which helped her tremendously in preparing for preschool.

But getting back on point, everything changes when you discover that your has a delay. I recently reconnected with an old friend, who sent me the following poem. It more than aptly describes everything that my family is going through in living with Jordan's Autism:

Welcome to Holland

Written by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…


When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."


The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 


 ~*~*~*~*~*~*~*~*~*~*~*~*

You can find poems like the one above, as well as many other helpful resources on autism, at this website:

http://www.child-autism-parent-cafe.com/index.html

If you think your child may need Early Intervention services, and you live in Southeastern Mass, please contact The Kennedy-Donovan Center:

http://kdc.org/

For ABA services and beyond, visit Children Making Strides

http://childrenmakingstrides.com/

And what better way to end a post, than with a smile!



Trick or Treat!

         Based on the last photo session we had, I thought Jordan would be fine when I scheduled their Halloween portraits for last Wednesday. She had a half day at school, and took a great nap in the afternoon. She was well rested and happy as a clam. We got her dressed into her "Tinka Beww" costume and we were on our way to Sears. When we arrived, Jordan ran in and played with the toys and some other children that were there. She said hello to the photographer (coincidentally, the same one that had taken our family portraits 5 months ago) and helped us get Johnny into his costume.

          

           But I should have known that nothing ever goes according to plan. As soon as we walked into the studio itself, she lost it. She began to sob and clasped her hands over her ears, a defense mechanism of hers when something frightens her. I tried everything I could think of, from asking her to give Daddy and Johnny hugs and kisses, to tickling her, to tossing her in the air. She wanted none of it.  I ended up taking her for a walk around the store to help her calm down. We sang our ABC's and she finally relaxed. Until we made it back to the portrait studio. She started clinging to me again like white on rice, sobbing and crying. We sat on a chair right outside the door and watched as Johnny had his pictures taken. I managed to convince her to sit on my lap, and we snuck in a few photos. The poor thing was so worked up we had to stop.

          With kids on the spectrum, you have to be prepared for events like this. Even if a situation is familiar, if something is off or one thing has changed, it can shake their whole world. My belief is that not all the same people were present for the photo session (Uncle Josh was not there) and that really threw her off and thus was the catalyst for her meltdown.  The most important thing that I have learned, especially from this situation,  is that she is not an autistic child, but a child with autism. She is first and always, a child. And the best way to deal with an unhappy child is  to maintain a calm and soothing demeanor.  She was able to pick up on my tranquility and feed off of it, and it helped her to feel safe and eventually at peace.

Despite all the commotion, we still managed to get these great shots!



        Trick or Treating itself was a blast. Jordan fed off the excitement of all the other kids and went up to each and every house that they did, holding up her bag and saying "trick or treat!"  This was a sharp contrast to last year, when she would only go with Uncle Pat and would not (as we later found out, could not) say a word.  She remembered to always hold my hand when we were walking in the street, and held the flashlight out in front of us when it got dark. Her progress is phenomenal, and she's only getting better. It was so much fun, and we're really looking forward to next year!