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!

                                  

           

Fin, Fur and Feather

            We don't give animals nearly as much credit as they deserve. Especially the little ones. The intelligence of dogs and cats is common knowledge. Cats are known to recognize emotion and can be very soothing when their owner is feeling angry or sad. Dogs can be taught many things, from something as small as a trick, to something as big as sniffing out drugs and bombs for the police. They, too, respond to a human's emotion.   But you wouldn't think a bird could act in that capacity. They don't respond to anything much beyond mimicking words, right?

              We've had Molly for 10 years. When we first got her, she didn't much care for people at all. She didn't want to be touched, and would panic when anyone came near her. It took me almost a year to get her to step up on to my hand, and another 6 months to allow me to pick her up without her biting me. She learned alot from watching her companion, Gordon, whom we had already had for two years. She would see us scratchig Gordon's head and snuggling with her, and  Molly eventually became a cuddler, snuggling with either John or myself. She would not, however, allow anyone else near her, let alone children.

             When my nephew PJ  began walking and getting in to things, he would constantly try to poke or grab the birds. Gordon ignored him, because she was used to being handled.  Molly did not care for this at all. She woud hiss and scream at him, trying to scare him away from her cage. Because she had bitten me in the past, we couldn't allow him near her, for fear that she would hurt him. We were beginning to wonder if we would have to give her away when we had children of our own. Would she act like this around them?Both birds took very well to my pregnancy. When Jordan started moving and kicking, they would sit on my belly and peck at the various movements. It was really sweet. When she was born, they were casual observers, regarding her carefully but keeping their distance.

             We lost Gordon the first winter after Jordan's birth, and Molly became very lonely. She would cling to us as often as she could, and had terrible separation anxiety whenever any one of us would leave the room. It was then that she really took an interest in Jordan. She now had someone to watch over. When Jordan began to crawl and to walk, Molly didn't respond as she had with PJ. She was interested in what Jordan was doing and where she still hissed when Jordan got near her cage, she never tried to scratch or bite.

                 When Jordan was diagnosed, it was as if Molly knew what was going on. Her whole demeanor changed. She was calm and reserved, and never balked when Jordan wanted to sit with her. She had patience when Jordan would run around her cage, or dump out her food. When her vocabulary started to expand, she would ask to "howd Mowwy." We always though that because our Sweet Pea was so high strung, she would try to run with Molly on her shoulder. But Molly brought out a sense of calm in Jordan. Jordan would sit still on either her bed or the floor, wherever she chose, and talk to Molly while the bird preened her hair or chewed on her shirt. 

        Jordan still has a lot to learn in life, but has gained alot of knowledge from this four ounce ball of gray and white feathers. She has learned patience and a modest amount of self control. The bird has taught her that she has to be careful so that she doesn't hurt herself or others, and that she has to wait her turn if Molly isn't ready to sit with her.  I encourage all Moms and Dads with kids on the spectrum, even those with typical children, to get your child a pet. It doesn't have to be a bird, but your child will gain invaluable skills and learn life changing lessons from caring for and living with this animal.

                      
          


                  

In memory of our dearly departed Gordon, March 1998- February 2008. We miss you and love you, dear little friend!

         

The Potty Adventure

          Every parent goes through it. It's time to move on from diapers and graduate to big kid underpants. Some parents skip the Pull Ups training pants all together and go right to underwear. That was always my intention with Jordan. When she was ready, we were going to go straight to big girl underpants. Training pants were useless, was what I was always told and firmly believed. Until now.

         As with many children with Autism, Jordan has a hard time deviating from routine. Put on a new diaper before bed. Get up in the morning, change the diaper, repeat through out the day. When she got into the summer program at school, her being in diapers wasn't a big deal, as the staff was well prepared to help her with toileting. I did notice, however, that most of her peers were either in Pull Ups or already trained. So I decided it was time to go head long into this adventure. We were going to start potty training.

         I discussed it with my husband and my mother, and we all came to the conclusion that switching her directly into underwear would not be beneficial to her. Biologically, she's 3 years old, but developmentally, she's only 2.5. The sudden change would be too much for her to handle, and she could regress. So we went to BJ's and bought a big box of Pull Ups. She was reluctant to put them on when we first introduced them, and would cry and throw a temper tantrum. I would end up having to hold her in my lap to calm her down, and show her slowly how to put them on.  After a few days, she was an old pro. She could pull them up and down like a champ. But she was still going in them.

       So I discussed with her teacher about training techniques, and she suggested setting up a schedule. Take Jordan every half hour until you "catch it." So that's what we did. We set the kitchen timer for 30 minutes each time and would go every time it went off. We'd sit for a full three minutes, and each time, she wouldn't go. And then, no more than 5 minutes after getting off the potty and going back out to play, she would announce to me "have go!"  So we'd run back in and sure enough, she had gone in the Pull Ups. And this continued for weeks on end, with only a handful of successes.

        She has since started school, and they are still working with her to use the potty, as we are at home. She still tells us she has to go aftter she has already gone, and doesn't quite understand that she's supposed to tell us before she goes so we can take her to the bathroom (or, as she says, "mafroom"). Where her language skills have developed phenomenally, her ability to comprehend is still behind, and that's where our wires cross.

 And so our adventures continue. We soldier forth on this bumpy road called potty training, with hopes that the little successes will soon become big successes, and we will finally reach our place in the sun. That place where Jordan uses the potty all by herself with no accidents! Carry on, my wayward trainer! There'll be pee when you are done! Don't forget to flush and then, always wash your hands!!

   

1 in 110

In 2007, the CDC determined that autism affects 1 in 150 children. Just this week, in a new study, it was determined that it now affects 1 in 110. This is a 57% increase from 2002 to 2006, and a 600% increase over the past 20 years. (source: http://www.autismspeaks.org/)

 We first noticed that something was a little off with Jordan at 18 months. At this age, she should have at least been using two word phrases. She could say little more than  "Mama" and "Dada."  She spent alot of time spinning objects on her Fisher Price learning table, and would isolate herself when playing. My Mom called the Kennedy Donovan Center Early Intervention Program, who in turn called me to set up an evalutaion. In April of 2009, Jordan was found to be in need of services. At 20 months, Jordan's developmental delays put her at a functioning level of about 7- 10 months old. She was assigned a service coordinator (Carrie), who would come every week for an hour to work with Jordan on catching her up. I was excited, hoping that this would help catch my baby up.
            
            The first couple of months were tough. Carrie would come for a visit, and Jordan spent more time crying in frustration because she just didn't understand. When we got into a playgroup through EI, Jordan began to blossom a little bit. She began babbling, and really interacting with the other children. But she still had horrendous tantrums, and more often then not would have a fruitless session.  In the fall of 2009, she had made some progress, but not enough. We brought in a Speech and Language Pathologist, who determined that Jordan would probably need ABA (Applied Behavioral Analysis) and suggested that we seek out a neurologist to determine if there was "more going on". I had bells and whistles going off in my head. They couldn't outright say they thought she might be autistic, but I knew what they meant. I had knots in my stomach when Carrie handed me a list of local pediatric neurologists, and I remember crying that night. I didn't have an appointment yet, let alone a diagnosis, and already I was devastated.  I called the next week and was able to get an appointment for January 15, 2010 through Children's Hospital Physicians at the South Shore.
        Jordan became more verbal over the next couple of months, and had even picked up on some sign language. The tiny steps she was taking gave me a glimmer of hope, but the red flags of autism still flashed in the back of my mind. In the social aspect, she followed the other kids around and would play next to them, but not with them (parallel play).  She still had her odd play (spinning objects, identifying colors on her toys in a specific order) and the few words she spoke were often echolailic. (Echolailia: repeating what is spoken to you verbatim).
               My mother accompanied me to the appointment with the neurologist. After giving her a brief history, the neurologist determined that Jordan had ASD (Autistic Spectrum Disorder). She would need ABA right away and also needed to be in the public preschool's summer program. Having already spotted the warning signs, the diagnosis didn't come as tremendous surprise to me. I had already swallowed the bitter pill, and was prepared to deal with it's effects. But now it was official. It was on paper and it was real. My baby was now 1 in 110. I called Carrie on the way home from the appointment, and the next time I saw her at playgroup, she gave me several resources for ABA in the area. I immediately called Children Making Strides and got an intake appointment, and by mid February, Jordan was seeing a new therapist three days a week.
              Between February and June of this year, Jordan made tremendous leaps forward with the help of  both Children Making Strides and Early Intervention. At her final EI evaluation at 22 months, her delay was discovered to be between 18-20 months. She was actively using her words and signs and I was feeling very confident that she would do well with school. The school evaluation went well, Jordan qualified for the summer program and was given a 5 day, full day program for the school year. We were thrilled. She is currently doing very well in school. She can use full sentences, say her whole alphabet, and count to 30, as well as spell and say her name. Her echolailia is way down as well as her jargoning. There are times where you can hardly tell she's autistic.
            But it's still there. It's in her tantrums and her screaming fits. It's in her destructive behavior when she gets angry. It's in the quizzical look she gives me when she doesn't understand.  It will never go away. As far as she's come, she still has a long way to go.

And, as parents, so do we.

For more information on Autism, Visit these websites:

http://www.autismspeaks.org/

http://www.autism-society.org/