Wednesday, September 25, 2013

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!


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!

Tuesday, May 28, 2013

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!

Tuesday, May 14, 2013

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. 


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!

Friday, April 26, 2013

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:

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!