"I'm so sorry" ...or... "Things You Should Never Say to an Autism Parent"

I was out perusing Wal-Mart one day with Johnny, and like he has a tendency to do when he's excited, he was chattering quite loudly and gesturing animatedly with his hands. Some of it was gibberish, but most of it was words he'd see on signs or numbers on price tags. I praised him for using his voice and his words, which only made him talk louder and get more excited. We were having a blast and I was so thrilled just to hear him talk and laugh, where as just over a year ago all he did was basically screech.

Meanwhile, the other patrons and some of the employees were either staring or glaring at us as we shopped. At one point, as we were in an aisle and Johnny was gesticulating wildly with his hands and sputtering jargon, a random person in the same aisle asked:

"What's wrong with him?"

I swallowed my irritation, plastered a fake smile on my face and answered:

"Nothing. He's just excited."

She frowns.

"Why's he doing that with his hands?"

"He can't verbalize his feelings yet, so that's how he conveys his excitement. He has Autism."

Her visible annoyance is replaced with pity.

"Oh I'm so sorry."

My ire bubbles up but I bite it back, smile, nod, and walk away.


This is unfortunately something we as Autism parents have to deal with every day. The public seems to feel that because our children are on the spectrum, that there is something wrong with them and we need their pity. I blame this view entirely on the media and their portrayal of Autism as a proverbial death sentence. To anyone who is unfamiliar and uneducated about the wide spectrum that is Autism, the media leads them to believe that all people with Autism are violent introverts who require constant care and supervision and will never truly be a part of society. They are also convinced that the parents and caretakers require sympathy because our kids are not "normal" and we as well will never live full lives because of that.

Well, here and now, that stigma ends.


"What's wrong with him?"

Nothing. What's wrong with you? Having an autism diagnosis doesn't mean that there is something wrong. He just learns how to interact with his environment differently than you do. I'll give you an example. If you see a pretty flower in the garden, you smile and stop to admire it. Johnny might see the same flower and also smile, but his excitement extends beyond his smile and he might run into the garden and mash the flower with his hand. Where you understand how to appreciate the beauty of the flower without disturbing it, he doesn't quite get that and has to be taught.  He's not wrong, he just learns at a different pace.


"I'm sorry"

I'm not! My children are as happy and healthy as yours! Why on earth would you be sorry about a child? Sure, they might react a little strangely when you first meet, and they might not look you in the eye when you talk to them. And yes I may look a little harried when my son is chatting up a storm and and my daughter has her hands clapped over her ears, yelling at him to stop because the sound of his voice is too loud for her. But I'm not sorry. I don't need sympathy or pity for any of that, because they are happy, healthy, and greet each morning with a  deep breath and a smile. Just like your kids.


"Just tell him to stop." (when he's screaming or jargoning)

Not that cut and dry. As I stated before. He learns at a different pace than you. He has to be taught with thorough repetition and often with  PECS (Picture Exchange Communication System) which behaviors are acceptable and which aren't in order to achieve what he wants. "Just telling him to stop" isn't effective, because what he's doing is his way of communicating. Would you like it if someone told you to stop when you were trying to talk?


"Isn't he too old/big for that?"

This is my favorite. I got this once when we took the kids out to eat and I requested a high chair for my son. He's a big boy (44" / 50lb at 4 years old), but still needs to be in a carriage at the store and often a high chair at a restaurant. He's getting better at learning the appropriate behaviors, but because of his delay he's still a bit wild and not always easy to control. He gets antsy, he runs, and he bolts. I have to do what I can to keep him safe and keep him calm. So no, he's not too old or too big for that. I requested it for a reason because I know what my son needs. Don't question me, just do as I ask.


"S/he'll grow out of it."

Um yeah. No. That's not how Autism works. The diagnosis doesn't just go away like a cold or the chicken pox, or a behavior like temper tantrums that can be unlearned. Though it is still unclear what causes it, Autism is an issue in the brain that causes the child to be sometimes slightly, sometimes severely delayed in their development. It is a life long "ordeal" for lack of better words, not a behavior that can be outgrown. Sure, there are certain behaviors and stims that may fade with time, but my children will always have Autism, and many people with Autism go on to live full lives. Just look at Temple Grandin!





There are hundreds of more inappropriate comments, but these are just a few of the most common ones I am faced with when out and about with Jordan and Johnny. So please, do yourself (and me) a favor when you feel the need to chime in when my child(ren) is/are having a hard time in public, or doing something that you think isn't "normal": don't.


I'll be blogging again soon with updates from this past (very exciting!) school year, as well as all the fun from this winter and spring! Until next time, friends!

Stay awesome!

Just two happy kids on the playground!

Summer Fun, First Experiences and the BIG move

Fall is here, and that means it's time to catch up on the goings on of this past summer. As you know, summer started off a bit rough in our house as we received Johnny's Autism diagnosis. It wasn't so much of a shock as it was a blow, but we pulled ourselves up by our bootstraps and wouldn't let this minor speed bump get us down. He is still the same happy-go-lucky little guy we fell in love with three years ago.

His first month at school was a culture shock. He didn't care for the structure at all and fought Miss Roxanne and her staff at every turn. There were some glimmers of understanding, but for the most part he had a really difficult time with the demands of the classroom. He liked going to school and was always happy when I dropped him off, but things were progressing a great deal slower than I expected when I'd pick him up and hear that he wouldn't sit for circle time and cried when he wasn't allowed to play with a certain toy for an extended period of time.  But then I gave myself a reality check and realized that I was setting the bar way too high. Once I came to that  moment of clarity and realized that he would 'get it' but it would just take time, I was able to relax.

And he did get it.

Well, started to, anyway. As much as one such as he could get in a six week period. He got on the bus for summer school without an issue and within the first week I was getting reports home that Johnny was having "good" days at school. He was following simple directions, sitting for circle time and even singing the songs with the other children. By the third week, Johnny had turned into a chatty-pants and was attempting to converse with anyone who would listen. There were a handful of words, but it was mostly jargon. I called it a win anyway, because he was talking! He was hailed as the most polite kid in class, because he could very clearly and appropriately say "please,"  "thank you," and "you're welcome."  He began enjoying school, and by the end of summer school in August, he got his first "great" report home!  He was well behaved, transitioned beautifully, and played with his friends. He was using simple signs and more words and phrases were popping up. We're both so proud of his progress!

Jordan, per usual, had an amazing year in kindergarten. She gained so many valuable skills over the year and through hard work and determination, proved herself more than ready for the first grade. Her graduation ceremony was to-die-for cute, with all the kids singing a song called "First Grade, First Grade" to the tune of  the Sinatra classic "New York, New York." Jordan got a diploma and my little ham posed for two pictures with her teacher, who was so proud of her. She was so excited to see that Daddy came from work to see her graduate, too! Afterwards, we went to Johnny's graduation ceremony at Mt. Pleasant, where everyone greeted her with hugs and high fives. Miss Popularity herself! And naturally, she had a stellar round this year in summer school, wowing the teachers with her skills and personality. At the rate she's going, I wouldn't  put it past my girl to be class president in high school!

Jordan and Miss Mortensen

Daddy and the Graduate!

Johnny's Graduation!

Johnny and his friend Leigha!

On to the really fun parts of summer! We spent lots of time at the beach this year! Jordan and Johnny loved it! They played in the sand, jumped waves, and collected shells, hermit crabs and sand dollars. Johnny especially loved collecting rocks, though it took quite a bit of convincing to make him understand that it wasn't okay to throw them! Another one of Johnny's favorite things to do at the beach was play with the mud. He liked to bury his feet in it and squish it through his fingers. He has no sensory issues, my quirky little guy! Jordan, the little fish, spent most of her time in the water. She loved jumping the waves and pretending to swim. She still struggles with following directions, but I'm confident that after this year she will be ready to enroll in swimming lessons next summer! One of the highlights was the hottest day of the summer where we spent the entire day at the beach with Uncle Adam, Auntie Pam, Logan and Gammie. The tide was going out when we got there, so we spent the whole time in the water. It was a great, relaxing day and a fun way to spend time with Uncle Adam and Auntie Pam before their big move to Tennessee. Our yearly trip to Saquish was a blast, of course. The kids swam and played all day and slept all night each night we stayed. Jordan loved sitting in her floatie and riding the waves with Daddy, and Johnny's favorite thing to do was chase the sea gulls yelling "quack! quack! quack!" He hasn't quite got the fact that not all birds are ducks, but he will! :) Too funny! We can't wait to go back next year!

Chillin with Auntie Pam and Logan

Silly faces with Uncle Adam

At Saquish with Mommy!

Cheese!

Diva in the waves!

Sitting with my sister

Quack! Quack! Quack!

For the first time this summer, Jordan and Johnny went to the movies! AMC cinemas runs a program in conjunction with the Autism Society of America called "Sensory Friendly Films" for kids with Autism and sensory processing issues. The sound of the film is turned down and the lights are kept up, and if the kids get antsy they are allowed to get up, walk around and talk if they need to. It's a great program!  Both kids are huge fans of Despicable Me, and as you are all aware the sequel came out this summer. We were very excited to learn that the Braintree AMC Cinema was running a Sensory Friendly showing of it shortly after it's release, so we surprised the kids that weekend and took them up to see it. Jordan was very excited and Johnny fed off that excitement as we waited in line for our tickets. She picked out M&M's and juice for both of them at the concession stand and they held our hands as we walked in and sat down in the theater. As soon as the movie started they were both mesmerized. Both kids sat with their drinks and candy in their lap and watched the whole film, with Johnny only checking in with me twice to make sure I got some juice. John and I both got to watch the movie, which we weren't expecting! We had a great time, and they can't wait to go again!

Waiting for the Movie!

The beginning of fall marked not only the start of first grade for Jordan and full day preschool for Johnny, but also a change of atmosphere for the whole family. Condo life just wasn't suiting us anymore. There wasn't enough room for all of us, the kids were constantly fighting in their room, and there was no safe place for them play outside. Fortune just happened to smile upon us in August and we were able to move in to my parents' old house, also the house I grew up in. With the help of good friends and family, we were all moved in and settled within just a few weeks.   Jordan and Johnny both have their own rooms now and a big back yard to play in that they are absolutely loving. We've been here about a month, and neither child has had any transition issues. They settled in seamlessly and are enjoying the bigger space. The atmosphere is noticeably lighter, Johnny and Jordan are more amenable to change now and we are all much, much happier. The new house also means a neighborhood to go trick or treating in! Johnny is going to be Spider Man, and Jordan has decided she's going to be Iron Man this year. So it looks like I'll be hitting up Amazon again for a little girls' Iron Man costume!   

Our new home!

School so far has been going very well for both Jordan and Johnny so far. Johnny now clearly answers yes or no questions, follows routine and listens to and completes simple directions. His reports home are mostly "good" or "great."  Every night he takes "beyah" (bear)  and "Woo-yee" (Woody) to bed, gives kisses and says " I yah yoo" (I love you). He is also trying harder to converse by using words more frequently than jargon. Jordan has a male teacher for the first time! I was nervous about it at first, where she's always had female teachers in the past. But she seems to really like him! Open house in next week, so I'm really looking forward to meeting with him. She is trying very hard in class, making new friends, and is adjusting well to the idea of doing homework. She still struggles with following directions, but with positive reinforcement she is getting much better. I can't wait to see what this year brings.

We're looking forward to a fun filled fall and a happier, healthier life here in our new home.

Until next time, folks!

Our First Grader!

So excited for preschool!

Big Changes!

    I specifically saved this post until after Johnny's IEP meeting, so I could share all the good news at one time. I can't even begin to describe the pride I feel in how well Sweet Pea and Monkey are doing. Within in a few weeks of each other, I had Jordan's 3 year re-eval/IEP meeting and Johnny's very first meeting. They went very well and are going to help pave the road to success for both of them.

     Before an IEP is established, the student has to be evaluated to assess their skills and see if they qualify for special needs services. Once it is in place, the student is eligible for 3 years and the goals on the plan are updated yearly. Before the end of the third year, the student has to be reassessed for eligibility. Believe it or not, this was Jordan's third year! Her physical, occupational, educational and speech testing took place over the month of April. She was also given a psychological assessment. All the results were gone over at her meeting at the beginning of May.

    I'm not going to lie, I was a little nervous going in. I know that because of her autism she automatically qualifies, but for some reason I had it in my head that they were going to reduce her services and I was going to have to go to battle for her. Of course I was wrong. As well as she's doing, Jordan still has hurdles she needs to overcome. She is learning to read and can write her name like a champ. She is fairly good at following directions, but can easily get distracted and will sometimes forget a step. She has some issues with math fluency, which doesn't surprise me because math has never been a strong suit on my side of the family. Her phys ed skills are coming along, though she has some work to do on object control (running and dribbling a ball, kicking a ball while running, etc.) and motor planning, which is manipulating her hands and body to accomplish certain tasks.  Her social skills are budding. She knows how to start a conversation but has difficulty carrying it on, and she is also apprehensive about initiating play with another student. She is very determined to do well, which is working to her benefit. One thing that I was very pleased to hear was that the school psychologist said she couldn't have picked Jordan out of the entire integrated kindergarten class as the student with autism! She was the most well behaved! Overall, her team is very impressed with her progress and adjustment. Next fall she will still be receiving speech, physical and occupational therapy, but she will be in the fully integrated first grade class!  I am confident she's going to do great!

    Johnny had his PT and OT assessments done together, and his speech done separately on a different day. Because he's so high energy, much of the formal testing couldn't be done. However, he is showing emerging skills. He has good motor control and planning, and though it may not be aimed at someone specific he can throw and kick a ball. He can hold a crayon and can manipulate small objects with his hands. He makes great eye contact and is able to convey to us his needs by leading us to what he wants and pointing. He jargons frequently and has very few true words. He does use intonation, so it is clear what he may be feeling or if he is asking a question. What isn't clear however, is what he is trying to say.  The speech pathologist did note, though, that he has all of the vowel and consonant sounds, and at it is just a matter of forming those sounds into words. Due to his autism, he also qualifies for special needs services and will be receiving physical, occupational and speech therapies at Mt. Pleasant Preschool. He will be attending a full day program, but will be in the ASD class as he's not quite ready for the integrated class yet. We are more than pleased that he will be seeing Miss Roxanne, who was Jordan's first teacher and worked wonders with her!  We had our first visit with Miss Roxanne's class today, and Johnny loved it! He explored the whole classroom, and was very excited when the other kids started to file in. He even sought out another student and was playing along side him. This is huge, as he usually just plays by himself. He was very sad to leave, which excites me to no end because that means he will probably acclimate well to preschool. We're going back for another visit on Thursday and are going to stay through circle time to see how it goes. Hopefully by then his IEP will be done and I can sign it so he can officially start next Monday. Yes, I know it is close to the end of the school year, but this will at least give him the opportunity to get used to the routine of going to school before summer school starts in July.

    Ah, yes. Summer school. This year, both Johnny and Jordan will be attending! It's the same deal as before. A six week program starting after the fourth of July and running through mid August, three days a week 9am - 2pm. As it stands, Johnny will only be going for a half day. However, that could change depending on how well he does over the next month in Miss Roxanne's class. I think he's going to do great and the full day will be in the cards for him. As a bonus, cousin Genevieve will also be in summer school, so Johnny will have a friend! It's going to be a challenging but fun summer  for our little Monkey as he conquers his biggest hurdle yet!

    As sad as it was for EI to end, Johnny has only benefited from seeing his Heather every week. The skills we've both learned over the past year will help us tremendously in the coming months. Through our work together not only have gained valuable knowledge, but also a treasured friendship. We just want to say thank you, Heather, for all you've done for us and we love you!

   This summer will bring new and exciting experiences for us all. I can hardly wait to see how it all turns out!


Until next time, friends!

All smiles for the beach!

Running in the waves with my big sis! 

A beautiful backdrop for a beautiful girl!

Health and Safety

Yes, this is a blog about Autism. And yes, this is a blog about the ups and downs of raising two children with Autism. However, I have the need to address something that may not be directly related to Autism, but has everything to do with raising children in a healthy and safe environment.

I love that Spring is here. The days are longer, the weather is warmer and the sunny days outnumber the rainy ones. This means that the kids and I can take more walks and spend more time at our favorite place: the playground! Johnny has recently taught himself to climb ladders and enjoys running amok on the sky high jungle gym and sliding down the twisting slide. Jordan loves the swings. She likes to kick her feet as hard as she can and soar through the air like she's flying. It's so heartwarming to watch them play with the other kids.  In recent trips, however, I have seen some things that have greatly disturbed me. One thing, actually, and it has occurred multiple times. 

Smoking.

Look, I get it. It's a personal choice to destroy one's lungs with tar, nicotine and other poisonous chemicals. I can't stop you from doing it. But do you have to do it around my kids? And not just mine, other people's? Children at playgrounds range in age from 2 years to 12 years. All are very impressionable. If they see adults doing this, there is a strong chance that they will want to do it too. There is also the risk of second hand smoke. Yes, it's in open air and the probability of inhalation is slim unless you're standing directly downwind from the smoker. But the probability is still there. There is also the further lack of respect the smokers have for the environment when they flick their butts on the ground, where any curious child could pick it up.

In recent years we have fought to outlaw smoking in public places. Most restaurants are smoke free, as are bars, coffee shops, and even our local mall. If we can fight to protect the health of the general public as they dine, drink and shop, why can't we fight for the health of our children while they are at play? My kids have as much a right as anyone to clean, healthy air.

I'm not going to martyr myself above other parents, but with children that have receptive language skills that aren't as developed as their typical peers, it's hard enough to convey the difference between what is healthy and what is not.I can tell them that smoking is bad for them, but that doesn't mean that they will fully understand what I am saying to them. This is why I think, as parents, we all need to take a stand against smoking at playgrounds. We should be able to take our kids out to play without having to worry about whether they will be exposed to toxic fumes or poor examples of how to take care of one's body. I know that the next time I see it, I am going to say something. I hope you all will, too. Maybe someday the right people will hear our pleas and do the same for our children as they have for the paying public and ban smoking at playgrounds. 

Playground fun!

I love the slide!

And Then There Were Two

Okay. So you may have noticed that the blog title has changed. We'll get to that in a minute.

First and foremost, let's update on Jordan. She continues to do well in kindergarten. She can write her first and last name, among many other words. She is quite adept at math, much to my relief because I am just plain old terrible at it. And she is also learning to read and loves to sit down with us to read her Dr.Seuss books. Are You My Mother? is her favorite. She attended the father daughter dance with her Daddy and had a blast, and also went to a friend's birthday party where I learned that she thoroughly enjoys listening to Taylor Swift. We are so proud of her progress and can hardly believe she will be finishing kindergarten soon.

Yet again, we lit it up blue on April 2nd for World Autism Awareness Day. My team at work was so supportive and wore blue Autism Speaks wristbands that I handed out. My friends and family also wore theirs, which goes to show what a great support system I really have. What really made me smile was to see two of my favorite personalities on Good Morning America, Josh Elliot and Sam Champion, wearing blue that day!  Thanks for getting the word out, everyone!

Now, on to the title change.

In late August I referred Johnny into Early Intervention. His speech was just not where I wanted it to be, and he was having difficulty understanding simple commands. He wouldn't make eye contact, or follow adult directed activities. Transitions from one activity to another were also difficult and often resulted in major meltdowns. He qualified for services and began seeing his service coordinator weekly in September. He picked up on a few words and some simple signs almost right away. We found that he responded well to deep pressure and started using squishes* to help calm him when he had a tantrum. At that point we also began using a weighted back pack* to help him slow down and focus, and a weighted blanket* at night and during naps to help him sleep. Eye contact improved significantly, and he began jargoning* with inflection more frequently, but still no real speech or conversation. I saw no real dramatic play*, and his play skills were lacking as well. (Example: not making "car noises" when playing with Hot Wheels, moving his action figures around but not making them interact.) I kept telling myself "he'll get it. he'll be fine." But I knew, deep inside, that I was fooling myself. Something was up.

So I called my pediatrician's office in mid February and they referred me to Mass General Pediatric Neurology, where I was able to get an appointment on April 25th with Dr Gascon. The wait was excruciating, and I saw little progress with Johnny. He picked up a few new words, and even began jargoning to songs he heard on his favorite shows (Mickey Mouse Clubhouse, Doc McStuffins and Octonauts), but little else changed. If anything, he added hand gestures to his jargoning and started randomly spinning or walking in circles around his toys. Mom and I took him to the appointment yesterday and after a thorough and informative examination, Dr. Gascon determined  from the lack of discernible speech and through observation of Johnny's interaction with toys and other environmental stimuli, that my little Monkey also had ASD.

I wasn't taken aback or blown away this time, because subconsciously I already knew. The doctor recommended educational treatment* from here on out to help Johnny progress and integrate into the world around him. We thanked him for his help and took Johnny, who was only too excited to leave, home.
In the 24 hours since, I have spoken with his service coordinator and also Children Making Strides.  We are in the process of trying to get Johnny ABA services and see if we can extend them beyond the age of 3, which he will turn next month. He also has evaluations at the public preschool over the next two weeks.

And then there were two. Both my babies are on the spectrum, and we are in for the adventure of our lives!

Everyone keeps telling me that God only gives us what He knows we can handle. And like I tweeted yesterday: "Get me my Star Spangled Leotard and Lasso of Truth, because apparently God thinks I'm Wonder Woman!"



*
squishes: pressure applied to certain points of the body that soothe and calm. Can include the shoulders, crown of the head, soles of the feet, joints and extremities.

weighted backpack: a small backpack weighted down with books or other heavy objects that achieve the same goal as the squishes.

weighted blanket: A blanket used to help soothe and calm people affected by autism, restless leg syndrome, BPD, etc. Often weighs about 10% of the user's body weight and, though not officially verified, helps the release of serotonin in the brain to help the user relax. We use Dream Catcher weighted blankets, you can visit their website for more information:  www.weightedblanket.net

jargoning: Also known as "gobbledygook," this is stream of indiscernible words and sounds used either with or without inflection.

dramatic play: Pretend play. (house, cops and robbers, etc.)

educational treatment: ABA therapy, integrated preschool programs.

He loves his ice cream!











And she loves her Patriots!

Moving Up In The World

My Big Brave Kindergartener!

The night before the first day of school, I was a complete wreck. Jordan, on the other hand, was beyond excited.

           "Mama!" she shouted. "I go to school tomorrow! I'm going to kindergarten!"

And I only smiled and nodded, barely able to contain my tears. I tucked her in to bed that night, a million thoughts running through my head all at the same time.

            Would she be okay? Was she going to have a meltdown as soon as she got to school? Was I going to have to pick her up after only a few hours because she became inconsolable? How would she adapt to eating lunch in the cafeteria? These worries had never been a problem before, because she always went to the same school. She saw the same people every day, in the same room,  went to school with kids all her own age, and ate lunch in the classroom. But this was a new school, with more kids in her class,two different teachers and two different classrooms. Not to mention the lunch in the cafeteria and that there were older children there, too. The changes to her routine were tremendous and potentially detrimental. As with most kids on the spectrum, Jordan has never adapted well to change. The slightest difference in her usual routine has the potential to throw her off so much that it can often take several days, in few instances weeks, to get her used to the change and back to her normal self. Our nights during these "transition fits" were more often than not sleepless and very stressful on the whole family. There was so much going on with the start of this new journey that I feared the worst. That we would lose our Jordan to a meltdown of epic proportions, and it would take the whole fall to get her back.  But these were only a few of my worries.
          The worst of my worries fell in line with bullying. This has become more and more of a problem in recent years, and it seems like not enough is being done to stop it. Older kids are picking on younger ones, little kids are getting picked on by the big kids, and kids with different learning capabilities are getting targeted by those deemed "typical" or "normal."  Children can be down right cruel, and Jordan, being as sweet and innocent as she is, would easily fall victim. She sees all other kids as 'friends' and in trying to be nice to another child could get taken advantage of and potentially hurt. And with the amount of students that the teachers have to watch over in the schools, some children can fall to the wayside, and that is how the bullying goes unnoticed. I am so afraid of this happening to my Sweet Pea.
          With all this swirling through my brain, it was difficult to sleep that night, so when I got up for work I was a jumbled mess. It was hard to focus scanning the truck and making sure everything got to where it needed to go. I muscled through and practically rushed out the door at the end of my shift, anxious but not really to get home.
          Jordan was dressed and almost ready to go when I walked in the door.
         "Hi Mama!" she greeted me with a grin. "I have kindergarten today!"
          "I know, Sweet Pea, and we're so proud of you!" I hugged her, and helped her to finish getting ready. We brushed her hair, brushed her teeth and tied her new, light-up shoes. I put her lunch in her back pack and had her put it on her back. She rolled her eyes and complained when we asked her to pose for pictures, but reluctantly agreed  and smiled for a couple of candid snapshots. At just past 8 a.m., we walked down to the truck and waited for her bus. Sure as the sun rises, the bus showed up a couple minutes later and I snapped a couple more pictures as she was buckled in to her seat. She waved excitedly as the doors closed and the bus pulled out of the lot for the first day of the biggest journey of her little life.
        That day was the longest, most excruciating day of my life. I kept busy in the morning by hanging out with Pat and Gena, but when the afternoon rolled around and Johnny was napping, I was left in a quiet, lonely living room by myself.  I missed her terribly and could only think about how she was doing adjusting to the new school. We practically ran down to the bus stop at 3:30 to wait for her to get home.
         She was so excited when she got home that she could hardly focus to tell me about her day. The most I got out of her was that she saw her teachers, her friend Justin, and that she ate lunch in the cafeteria. In true Jordan fashion, she was so overwhelmed by the end of the day that she had a meltdown that night and crashed at 6:30 pm.  But I didn't get a call from the school, and the reports I got from from her teachers were glowing. So I was left with only one conclusion: the first day of school was a complete success!
          That was the only major meltdown she had. As her first full week progressed, she was able to tell me more and more about her school days. She came home Tuesday and told me, without prompting, that they had a fire drill. She told me it was really loud and she covered her ears, but she listened to her teachers and followed directions. Just yesterday, she told me that her friend Sean didn't like the applesauce they made in kindergarten and he cried. But my daughter, ever the counselor,  told him it was okay and he didn't have to eat it. I get only positive feed back from her teachers and she is adjusting beautifully to the change.
           Words can't even begin to describe the pride I feel when I see that glowing smile as she jumps off the bus at the end of each day. My little girl, who just three years ago couldn't talk and whose future to us seemed unclear, is now a successful kindergarten student that everyone, from the bus drivers to the school secretary, knows and loves! She's moving up in the world, and I may not know what the future has in store for her, but I know that if she goes into it with the same positive attitude that she takes to kindergarten, she can conquer the world!       
         
   

Waiting for the bus with Johnny!

Bye Mom! I'm off to school!

For more recent updates on Jordan and her little brother Johnny, Follow Me on Twitter!

@MrsCeda , #SweetPea , #AdventuresWithJohnny

Fun in the Sun! Summer 2012

   

         The summer of 2012 has  brought us many adventures, and as we wind down and head toward the biggest transition of Jordan’s life, it’s time to pause and reflect how far we’ve come.

June brought us to the end of preschool for our Sweet Pea. I think her last IEP meeting with her preschool team was the toughest. She has made a great deal of progress in her cognitive and expressive skills, but still has a bit of trouble focusing and staying on task. Her social skills are superb. Everyone loves Jordan! Whenever a new friend joined the classroom, she was always the first to greet and make the new student feel comfortable. Our main concerns going in to kindergarten were the new atmosphere of the big elementary school, having to change classrooms for different lessons (ie: gym, music, art, etc) and having lunch in the cafeteria with the other children. The biggest sigh of relief, however, was in learning that she would be attending the ASD program at Federal Furnace Elementary. What this means for her is that she will go to school for a full day, as opposed to only a half day were she a typical student.  She will still have a half day in the typical classroom, but the other half will be with the ASD class.  So there will be no transitional issues in switching from a full day of preschool to only a half day of kindergarten!


Preschool graduation was positively adorable. This year it was held outside on the front steps of the school. All the children filed out in construction paper graduation caps decorated with stickers, markers and glitter glue. Jordan waved to all of us and was most excited to see Gammie, Great Grandma and  Grammie all clapping and cheering for her along with Daddy, Mommy and Johnny. Miss Melanie announced each child by name and said something nice about everyone.
We got to meet Jordan’s best friend Charmaine, with whom we exchanged phone numbers and promises of play dates. Jordan then got special gifts from Grammie and Gammie, and Uncle Josh joined us all for lunch at Bertucci’s. It was a very special day!

The birthday girl turned 5 on June 20th!  We celebrated at home with chocolate cake and chocolate ice cream (her choice, of course) and Jordan picked out a Disney Princess pretend hair styling kit as her present. We then surprised her that weekend with a trip to the New England Aquarium! I had some fears going in that she wouldn’t like the dark, closed in atmosphere and would have a melt down due to the crowds. But she surprised me yet again and was on her best behavior! She loved every aspect of the aquarium, from the penguins and the giant tank, to the jelly fish and the ray and shark touch tank. She stayed close to us, held hands when we asked and listened to everything she was told. We were very pleased! She is very anxious to go back!

After a minor debacle with the school department regarding her transportation and the lack of necessary paperwork that they never sent, Jordan started her final summer program with Mt. Pleasant. Unfortunately, Miss Melanie had resigned so she had a different teacher this year. She seemed to do well and enjoy her time there, but I was more than a little disappointed at the lack of communication from the new teacher. I never received notes home regarding the day’s progress and there was one incident that almost prompted a call to the program director. Jordan had a coughing fit at school to the point where she almost got sick and was running a fever. And, instead of calling me, the teacher’s aides had the bus driver relay the message to me. The driver was equally dismayed and agreed that the school should have contacted me. I managed to calm myself enough not to contact the director and chew her out, and decided to give them one more chance and if it happened again I’d be on the phone in a heartbeat. Fortunately for everyone involved it did not. The rest of the program went off without a hitch.

Our other big trip of the summer was to the Franklin Park Zoo with Uncle Pat and his crew. This probably would have gone off with out a hitch if not for a couple of reasons. It was part of a program called “Free Fun Fridays,” so the entire state decided to show up and the crowds were obnoxious. It was over 90 degrees, so we were all hot, sweaty and particularly whiny. And naturally, as per usual in public places, Jordan refused to use the rest room and began to scream and cry. After we battled through lunch and it was time to leave, Jordan pitched a fit and fought me the entire walk back to the car. I practically had to drag her out of the zoo and  dodge her feeble attempts at hitting me to get her buckled in to her car seat. Unfortunately, and due in large part to the excessive heat, she got car sick on the way home.  The exhibits we did get to see the kids enjoyed,  and we may go back in the early fall and try again when it’s not so hot.

We made our yearly family trip to the beach house on Saquish which was very relaxing for everyone! Jordan had great time playing with her brother and bonding with her cousin Kerri. She had the most fun wave jumping and swimming in the ocean! She has no sensory issues out there, and no problems eating, going the bathroom or sleeping. She’s looking forward to more trips out!

Fun time in the water!!

Jordan is eagerly anticipating the start of school in a couple of weeks. I think I’m more nervous than she is! I have the “I’m-not-ready-for-my-baby-to-start-kindergarten” jitters, as any parent should, but it’s more than that. I worry that, because of Jordan’s naturally congenial nature, she’ll get taken advantage of by the older kids and potentially bullied. There’s the worry, of course, that she won’t get the services she needs or was promised in her IEP. But I’m not too concerned on that point, because I have every intention of being 100% involved with the school and the PTA.  There is no way she is going to get lost!

There’s three weeks left of summer, and we have every intention of enjoying every last minute of it!  The next blog will be after school starts!

Until then!