Project Infinity Blog

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Mommy the Padawan

As parents we may not have all the answers, but we have lived a little more than our younger counterparts…at least enough to share some wisdom (so we hope). As the parent of a child with Autism, I always try to be one step ahead of the game in order to make my son’s life as worry free as possible. At times, I catch myself rushing to make decisions that could involve him, for the sake of time and trouble, when ultimately that answer is usually right there with him, causing me to cut unnecessary corners. I am always learning from my children, and always growing with them… or so I hope. Today was a good day. My son Rogan is officially out of school for the summer, and off to 5 days a week of ABA and other therapies (which he actually loves). Rogan has been working hard to use people’s name when asking for something, which has been going exceptionally well. Rogan has been enjoying spending more time with me in the afternoons, as my schedule has also lightened up for the summer. This newly found time has afforded us more story and play time, which opens up many more opportunities for learning. I asked Rogan today “Do you love Mama?” and he replied with an enthusiastic “yes”, which I have to admit felt great! Today was met with lots of hugs, and Rogan’s communication was definitely on point. It is no secret in our house that Rogan is addicted to technology, and is always looking for a way to get his hands on the nearest cell phone or iPad. My husband and I are mindful to set strict limits on Rogan’s use of electronics, as we notice that he tends to use these as a way to self stimulate by looping scenes from videos. If we do give him iPad time, it is monitored closely and he is given no more than 15 minutes at a time before he begrudgingly has to let go of the device and move on to the next activity. My generation did not have the types of electronic devices that are available today in fact, you were doing well if you owned an original Nintendo console with a copy of Super Mario Brothers. I have noticed thought that I too spend more time scrolling through my iPhone navigating social media or keeping up with current events than I did 10 years ago when technology was a little more primitive. After today, I have also realized that I need to practice what I preach when it comes to my own screen time. Rogan and I were watching Blues Clues. It was an episode that I had seen at least 52 times, and I could quote along so, I picked up my cell phone and started reading an article that a friend of mine had shared on Facebook. Rogan asked “I want phone please” and I responded “no Buddy, Mommy is reading something right now”. Usually, Rogan would’ve continued to ask for the phone regardless of my answer, but this time he attempted to take it from my hand without warning. I stated again “hey Buddy, Mommy is reading so you can’t have the phone right now” and he responded by continuing to retrieve the phone. All of a sudden it hit me, like Han Solo shooting Greedo from underneath the table in the Cantina Scene in Episode IV of Star Wars…What if Rogan doesn’t actually want my phone, but wants me OFF of the phone? I looked at Rogan and asked “Rogan, do you want Mommy to quit looking at her phone?” and he answered “yes”. I realized in that moment that it was more important for me to watch the episode of Blues Clues for the 53rd time, that it was for me to read an article on my phone that I could save for later. My son had flipped the script and taught me something extremely important…that he wanted my attention. A few minutes after it happened, I replayed the entire exchange in my head and realized that I was really glad that Rogan asked that of me. It meant that he sees our time together as important, and that it should never be secondary to a cell phone. It shows an emotional connection between child and parent, a connection that some people feel that children on the Autism Spectrum are unable to show. I am hopeful for more of these exchanges, and look forward to being the Padawan Learner that my Jedi Master son expects me to be.

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One protest on the deck is worth one fish on the line...

With Fiesta events currently in full swing, my husband and I thought we would take our chances at Morgan’s Wonderland today with our two children.  My father was in town visiting and wanting to spend time with his grandchildren, so the accessibility and sensory friendly features that the park offers makes it a win for our son on the Autism Spectrum.  The park was surprisingly empty, making it easy for the kids to ride and participate in all of their favorite activities multiple times without waiting in line.

For whatever reason today, my son Rogan wanted to go to the pier and was repeatedly asking “fishing pole”.  My dad and I obliged and we approached one of the staff member’s who was working at the catch and release fishing activity for assistance.  Rogan lowered the line into the water and reeled it back up several times, before indicating that he was done with the activity.  At that point we moved on to the water cannons at the other end of the pier, and assumed that fishing time was officially over.  

After spending about 15 minutes at the water cannons, we decided to head to the next activity.  We started walking in the direction towards exit off of the pier when Rogan again began asking “fishing pole”, and I stated “no buddy, let’s go try something else”.  Rogan has never been one to throw tantrums, but he will protest when he is told “no” from time to time...this was one of those times.  Rogan promptly laid down on his back on the pier, looked me directly in the eyes and stated “I want fishing pole”.  I begrudgingly agreed, and stated, “alright buddy, we will go try the fishing pole one more time”.  

As we were walking around the pier looking for a fishing pole with bait, I noticed that there was a pole that was abandoned that had a line in the water.  The line was moving around in the water, and it was obvious that this pole had a fish attached to it’s hook. I assumed that there was probably a small perch on line, and thought that it might be fun for Rogan to actually reel in a fish this time. I called to Rogan and said “look, this one has a fish, let’s reel it in”.  Rogan got in front of me and grabbed the pole, holding it with me.  Now, for those of you who have never been fishing at Morgan’s Wonderland, it is always catch and release (so don’t go expecting to leave with a cooler full of fish), and the fishing poles are about 2 and 1/2 feet long to prevent people from hitting each other with the ends of the poles.  Rogan and I begin attempting to reel this “little fish” up, when I begin to realize very quickly that this is no little fish.  Rogan continued to hold on to the fishing pole while I attempted to use a child’s size pole to reel in an extremely strong fish. The reel began to act up, and no matter how much a reeled, it seemed like this pond beast was not going to come up. Finally, the Morgan’s Wonderland staff that was monitoring the pier came over to assist us and began aggressively pulling the fishing line up so that I could reel it in without breaking this tiny fishing pole.  After a couple of minutes, we managed to pull the monster that is pictured above...a catfish that was about 1 and 1/2 feet long and weighing about 10 pounds.

The staff took out a net, put the catfish in, and placed the fish on the pier.  Rogan stared at the fish in shock, as I don’t think he anticipated what was going to come out of the pond at the time.  Rogan watched intently as the staff member removed the hook from the fish’s mouth, and then released the fish back into the pond.  Afterwards, the staff member gave Rogan a bright green sticker that said “I caught a big one at Morgan’s Wonderland”.  Usually, Rogan is not one to put stickers on his shirt, but he made an exception for this one, which he continued to glance at from time to time as we proceeded out of the park.

For me, today taught me that Rogan’s protests are warranted sometimes.  Maybe today in his own way, he was trying to tell me “hey Mom, listen to me.  I have ideas too”.  As we were walking away, I thought to myself “I’m glad that I go to share that experience with my son”.  This was the first time he had ever caught a fish on a fishing pole, and it was an amazing experience.

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The World According To Steve Miller, Daft Punk, and The Gipsy Kings

My son is 5 years old, diagnosed with Autism Spectrum Disorder, and is brilliant. I am always amazed by something new that he says or does each day, and am so grateful for each little milestone. Everyday offers a new opportunity for growth and learning, which takes a bit of the sting of Autism away. Rogan has a significant language delay, but has shown great strides and is able to state wants and needs to us. Rogan is also a "scripter", which means that he tends to recite or script lines from television shows, movies, and video games when he becomes anxious or overly stimulated. Scripting has been helpful at times when Rogan has used scripts to state a thought or feeling, but a hindrance when the scripts are not used functionally. One thing that has been extremely helpful to Rogan is Music. Rogan loves to sing, and has a surprisingly nice voice for a 5 year old. Rogan receives Music Therapy, which has been extremely beneficial to his progress with expressive language. A great example occurred a couple of weeks ago, when my husband and Rogan were riding home from OT in the car together. Rogan's music therapist had been working for several months with him using sings and picture cards to help him identify family members by name. During this particular drive home, that persistence finally paid off when Rogan asked his father "I want to go to Grandma's house, yes", without any warning or assistance. It was amazing, Rogan generalized what he learned in music therapy and applied to to real life! Rogan has a great memory, and can remember the lyrics to songs from a variety of artists (his favorites being "Bamboleo" by The Gipsy Kings, "Jet Airliner" by The Steve Miller Band, and "Lose Yourself to Dance" by Daft Punk). As amazing as his knowledge of lyrics and melody, it is equally as impressive that he was able to take what he learned in music therapy, and apply it to real life. I encourage all parents of a special needs child(ren) to continue to not only consider the joy these types of therapies may bring your child, but also to recognize the vastness of the benefits that they provide.

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Autism and Pumpkin Empanadas...My Journey as an Autism Mom

My story is not so different from other moms. I was over the moon when I found out that my husband and I would be welcoming our first child.  Well, technically it was our second child, as we had the tragic misfortune of losing our first child to miscarriage as soon as I entered my second trimester.  It felt like I would NEVER get over it.  I remember a vivid conversation with my sister-in-law (who had an almost identical experience) while confiding to her my anxieties after finding out I was pregnant with another child.  She said to me, “If you don’t calm down, and start trying to be positive you are going to put yourself at risk of another one (miscarriage)”.  At that very moment I knew I needed to get it together...and quick.

Pregnancy is awful.  I say that with love, as I have absolutely NO REGRETS about either of my children, and it is impossible to picture my life without them BUT, PREGNANCY IS AWFUL.  I had every symptom under the sun, and some that hadn’t been invented yet.  I had what I affectionately call ‘Morning, Noon, and Night Sickness”, round ligament pain, food aversions, smell aversions, my hair fell out and was so full of dandruff that it looked like a Christmas card.  Then, as if God was playing a fun-filled prank, my son was measuring big.  He weighed 10 pounds 11 ounces at birth to be exact.  I was a walking pregnancy stereotype.  Thank God I have an extremely understanding and supportive husband with the patience of Job.

On June 14, 2011 all of that craziness seemed to melt away after I gave birth to a healthy, adorable, yet large baby boy.  We named him Rogan, and he had a head full of dark brown hair, and a butt chin (I say that with love, as it is absolutely adorable!). Rogan was the most beautiful thing I had ever laid my eyes on.  Of course, having a newborn was an adjustment.  My husband and I were exhausted, and actually had our first argument ever due to lack of sleep.  It didn’t matter though, as over time we adjusted to having this little bug with us.  We were both smitten, and loved watching Rogan grow and develop as the months went by.

In terms of development, Rogan hit every milestone, and some way ahead of schedule.  He was a loving little boy who was full of smiles.  Rogan turned over at 3 months, crawled at 5 months, and walked at 10 months old.  He was extremely active, and loved to be outdoors.  He loved being sung to, and would always look up at me and smile whenever I sang some of our special mother-son songs to him. 

What wasn’t happening was speech and language.  Rogan would babble and coo like most children under the age of 1, but he never started saying actual words.  I noticed that as the months went by Rogan started humming and walking on this tip toes.  As a therapist who works with individualson the Autism Spectrum, I began to become concerned.  I decided to consult Rogan’s pediatrician for guidance, and was told “He’s a boy.  Most boys don’t talk until they’re 3.  I wouldn’t worry about it.”.  I knew that she was a doctor, and the expert on this sort of thing, but I didn’t believe any of the crap that she was telling me.

I took matters into my own hands and consulted a Pediatric ENT. The ENT ordered us to have a procedure to check Rogan’s hearing (which yielded normal results) and referred Rogan for Speech Therapy.  Of course our medical insurance did not cover Speech Therapy, because Rogan did not have any sort of formal diagnosis other than a Speech Delay. We paid for Speech and Occupational Therapies out of pocket, and had two of the best therapists in the world.  Progress started happening. As luck would have it the Affordable Healthcare Act went into effect which caused us to have to change to another pediatrician....THANK GOD.

This change opened a huge door.  We were instantly referred to a Developmental Pediatrician for help.  I remember feeling so many different emotions.  On December 29, 2014 at 9:40am in a small office where my father, husband, and in-laws sat with us, Rogan was officially diagnosed with Autism.  I remember feeling nothing.  My first thought was, “okay, now I need to start seeking resources”.  Luckily, I am extremely familiar with what programs are out there that provide services to children on the Autism Spectrum, as well as knowing lots of other parents who are already in the community.  I started making phone calls...it took all day, but I lost track of time and just kept focusing on what bases to cover.

We didn’t qualify for Medicaid because of our incomes, which meant that we also didn’t qualify for Social Security Income.  I began to see the frustration of those parents who are attempting to secure resources for their children, but are unable to because of income or resources...it was exhausting and aggravating.  I kept hearing things from friends and family like, “but you're a therapist, you can just work with him” and “you should just know what to do because of your background”.  Pardon my frankness, but statements like that are complete bullshit.  It doesn't matter how much you know, or what you do with others, it is completely different when it is YOUR child.

In the meantime, we began to see more Autism symptoms emerge.  Rogan became an extremely picky eater.  I think he lived for the next year on a strict diet of chicken tenders and pumpkin empanadas. Rogan also began to run away from my husband and I when we were out in public places, which scared us to death that he would be hit by a car or abducted. We continued to push, and thankfully the Developmental Pediatrician referred Rogan for Applied Behavioral Analysis (ABA).  ABA is considered one of the most successful, yet controversial therapies provided to individuals on the Autism Spectrum because  it is grounded in Behavioral Theory and practice.  Rogan took to it very well, and we began to see lots of progress in the form of verbal communication particularly.

As he reached the age of 5, we then had to prepare for Kindergarten.  ARD’s are a nightmare, and it is absolutely essential to hire an advocate prior to planning for any child receiving Special Education services.  Again, Rogan was blessed with a Special Education teacher who was willing to go above and beyond to help him succeed, and a grandmother who is a retired teacher who has helped him with academics at home.  Even more amazing was that during his testing, he was found to be ahead of most children his age academically and was recommended for inclusion with the rest of his neuro-typical peers.

Rogan is an intelligent, loving, and affectionate child with a love for life.  I love being his mother and he makes me want to be a better person no matter what it takes.  We are extremely fortunate to have an amazing network of support ranging from grandparents, friends, and strangers that are compassionate. My advice to any parent with a child on the Autism Spectrum is this: 

Don't be afraid to ask for help...it is out there.  Never underestimate your child, they know and understand way more than you think. Don’t let Autism define your child. Never, and I mean NEVER give up hope...you are all they’ve got.