Happy 8th Birthday Mateo!


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Every year for Mateo’s Birthday I like to write him a letter. I don’t think I have ever read them to him, maybe we will make that a tradition this year. Today Mateo turns 8. This has been a huge year for him. All home therapy has ended. He is working very hard in second grade, with very few modifications to his curriculum. The progress that he has made in the past 5 years is truly astonishing.

Dear Mateo,

You are 8 years old today! I can’t believe how quickly those eight years have passed. I was so excited to have a boy, was so happy that I would get to have one of each! And when you finally came into this world you brought me so much happiness and completed our family.

I was amazed at how you adapted to having people in and out of our house all of the time since you were 2 1/2. You had a scehdule as tough as most adults by the age of 3, but you tirelessly kept pushing. I am so proud of you and how you never gave up on anything, no matter how frustrating it became for you.

So here we are today, and you are a big kid! I love how you want to discover how to make a dinosaur. I love how you make hilarious youtube videos. I love what you build in your Minecraft worlds and how you share them all with me, Daddy and Maya. I love your independence and how you insisted on walking your cookies to share with your class today in all by yourself.

You amaze me!! Always be proud of all you have accomplished! Always! Be proud, that nothing has ever gotten in your way to reach your goals and aspirations. Be proud of all that you are, because you are incredible! You just being yourself have touched countless people. You have inspired people with your accomplishments, attitude and spirit, you have inspired me.

I love you so much and am excited for what new exciting things we discover together in the next year.

Love,
Mom

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The Real Jurassic Park


T-Rex Crossing!

T-Rex Crossing!

It has been so long since I have written in Mateo’s story. I think of stories, challenges and moments to write. But I never seem to have the time to put together a cohesive blog. I wanted to write about losing another child to wandering, but the news is so depressing and painful that I chose to just post it on facebook and leave it at that.

And this is about Mateo’s journey with Autism and my families journey with Autism. And I have always focused on the positives, because for me life is one big challenge. We are all faced with challenges, it’s how we take them on that matters. Saying Autism is a challenge is definitely not a sufficient enough explanation for so much that people with Autism are faced with each day. Or the battles parents with Autism fight for our children. But if we can take a moment each day and look at the progress or even how well we handled that huge meltdown or how we developed a new plan for taking on that challenging behavior, things become easier.

Our house is now full with stories of Angry Birds and Jurassic Park. Mateo is a born story teller, he loves to imagine his life within his passions. He is now determined to make a dinosaur. Now by making a dinosaur, I don’t mean one out of molding clay, I don’t even mean one of those cool dinosaur models you put together. I mean genetically creating a dinosaur. Mateo is now reading quite well and very interested in researching his interests on the internet.

He has googled: “How to make a dinosaur” “Dinosaur DNA” “www.dinosaurs.com”. And with that has found a paleontologist who shares his interest, and with his Dad’s help has been consumed with his Ted Talks. So when my son creates a real Jurassic park one day, please don’t be surprised. He has intense determination.

My goal is to never crush that determination, his incredible imagination or his infinite dreams. Those are what will push him through life, to make him successful and independent. Helping him to pursue his love of dinosaurs now, will help him to explore and become passionate about science. Helping him to create and produce his little Angry Bird’s videos on his private You Tube page will foster his love for art and creativity.

So many times with children with Autism we try to fit them into a box where they don’t belong. We try to force other subjects on them, stifle their passions. We are told to make them restrain their self-stimulatory behavior to make them fit into our world. I remember how awful I felt when trying that, how it felt so wrong to me and how happy we all were when I decided that we weren’t going to do that in our home anymore. And how Mateo himself adapted to his classroom, and eventually found his own coping methods. Because we believed in him.

I love entering his world, he loves to include me in his angry bird’s videos, or when his dad and him go on a hunt in the backyard for Dinosaur DNA. How even when he’s having a hard time, I will still hold him with all of my strength and let him know that he is safe. Every day I think of how proud I am of how he’s taken on so many challenges. I am so happy to have this amazing boy in my life, and that is a lot to be grateful for.

Trying to convince him that Jurassic Park is not a real place that we can go to, that’s a whole other challenge!

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An open letter to our ABA Company


It is official, we no longer have the support of our ABA provider that we have had for the past 4 years. It is really hard to believe that my husband and I are officially on our own to help our son foster and grow into an independent young man. The progress Mateo made over those 4 years is astonishing and we definitely owe so much of that to the support of all of the ABA therapists (we called them tutors) who came in and out of our home and taught Mateo and our family so much. So I wanted to write them a letter to tell them how much I appreciate them.

An open letter to our ABA Company (They know who they are):

Dear ABA Tutors, Leads, Consultants and Supervisors,

Thank you from the bottom of my heart. Thank you for giving my son a voice and way to communicate when he was almost 3 and had so little words. You taught him and us about PECS (Picture Exchange Communication System), and with PECS Mateo could tell us that he wanted Chocolate Milk, a sandwich, squeezes and his favorite card of all Candy. His meltdowns went from about 20 a day to very few, and his words began to flow. It was the best gift I have ever received.

Thank you for coming over every day and playing with Mateo, for always showing him love and compassion and teaching him how to play nicely with his sister, how to take turns with his friends and most of all making his therapy an enjoyable experience for us all. Our home was always filled with squeals of laughter, the tromping of feet and the imaginative play of Skippasaurus and the chugging of Thomas Trains.

Thank you for teaching us how to handle the meltdowns, how to stay strong and not meltdown myself. How to take each day, day by day and how to always focus on the positives. How to reward the good behavior and ignore the bad. How to never give up during hours of potty training when we saw no hope. How to always notice the progress no matter how small it was, and be thankful for each hurdle we conquered. And we conquered a lot.

I will never forget the Throw Card, because when Mateo was done with a lesson he would just start throwing cards, so they made him his own throw card when he was frustrated. I will never forget the sound of the timer going off to keep him on track, the Mickey Mouse treasure chart to track his rewards. The hours and hours of blanket swings, hide and seek, cardboard rockets, dinosaurs, puzzles, games like Balloon Lagoon and hunting for treasure as pirates. I will never forget the 4 years of incredible memories that you all created in our home.

Most of all thank you for taking this job which does not pay near enough for all that you do. You make such a huge difference in each child’s life and for each family. You are teachers, therapists (for kids and parents), and friends.

Here is the chart that shows how far Mateo progressed from diagnosis to today. It is incredible, and we are so thankful for that amazing gift. We will never forget it or forget all of you. I wish that there was more that we could give you in return, but just know how special you all are to us all.

Look how far Mateo has come!

Look how far Mateo has come!

The Pink line shows where he started when he was evaluated just before he was 3 and the top line is where he is today!

Posted in ABA, Autistic Community, It's Autism, Therapy | 1 Comment

Keep Calm and Stim On!


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Image from Autism Women’s Network

I know, every month is a different month of Awareness whether it is bringing awareness to Breast Cancer, Heart Disease or Autism. But the month of October is an important Awareness month for me. It is Sensory Processing Disorder Awareness Month.

Many people probably do not really know or understand what Sensory Processing Disorder is.

Per Wikipedia it defined as: Sensory processing disorder or SPD is a group of neurological disorders in which the neurological process known as multisensory integration fails to organize input coming from multiple modalities, such as proprioception, vision, auditory system, tactile, olfactory, vestibular system, interoception, or taste; in order to adequately function. Different people experience a wide range of difficulties when processing input coming from a variety of senses. However, Sensory processing disorder is characterized by significant problems to organize sensation coming from the body and the environment and manifested by difficulties in the performance in one or more of the main areas of occupation: productivity, leisure and play or activities of daily living.

Many people with Autism also have SPD, not all, but many. Mateo is one of those. Sensory Processing disorder makes many things challenging for him. He can be very light sensitive, going from the classroom to the playground on a bright day can be beyond overwhelming. The rain touching his skin can cause him to stop moving and shut down.  In order to process the world Mateo uses a coping mechanism called Self- Stimulatory behavior also known as Stimming. This is the most evident part of SPD for Mateo.

For Mateo his current stimming is hitting his hand against his legs, flapping his arms, vocally clearing his throat. These stimming behaviors are often brought on my happiness, anxiety or over stimulation. So you will see Mateo stimming a lot. If he is engrossed in an activity like playing Angry Birds, he won’t stim as much. In class he never wants to stand out in front of his peers so he will hide it by constantly tugging his shirt or shifting in his seat.

When he returns home he is able to let it all go, and holding it in all day causes him to stim repeatdly. I find it interesting though, his need to fit in. I tell him all of the time that he is perfect just the way he is, that he’s amazing, how proud we are of him. But he still seems to want to hide his Autism. I don’t want him to be ashamed of it. I think one of the best ways for me to help him besides just telling him is to get others to understand him, to understand Autism.

He gets a lot of stares, not mean stares or anything, just interested ones. People wondering why is that kid moving so much, I wonder what is causing that? People may think he’s just hyper the amount he moves when we are standing in line, or walking through the grocery store or just out and about. Sometimes his SPD causes him to bump into people unknowingly.  That is usually when I will try to explain things. It happened at dinner recently. We went to a place we frequent where you stand in line and order and sit down. There was no seating available, and Mateo was getting very anxious. He was so worried that we would never find a seat, and he began stimming and bumping the woman behind us. I quickly apologized, and she put her hand on my arm, and said- “PLEASE don’t worry, don’t worry at all, it’s totally fine.” She got it. I let out a sigh of relief.

So I try, one person at a time to just share a little insight into the world of Autism and SPD. It’s a challenging world at times, but I don’t want Mateo to have to try to conform to feel he has to fit in. I want him to know, it’s ok to shake his hands or jump up and down to help him process the world. The world will eventually get it. They will eventually look past the vocalizations and hand flapping, they will eventually see how much he and so many people in this world with Autism have to give.

One blog, one mom, one self advocate at a time- spreading awareness, hope and understanding. We can get there!

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Summer time, pool days, hangin out and the inevitable meltdown.


I think I have written and rewritten this blog about six times. It has been so long since I have posted anything and I am feeling a little writer’s block.  And looking back, I am realizing this is my first post for all of summer. WOW!! Of course during summer we have had weekends packed with fun adventures. We have gone camping, boating, many hours of swimming at the pool and countless fun times with our friends and family. Believe it or not the kid’s summer is coming to an end in just over a week. I know they are definitely not ready for the school year to begin again. But I am pretty sure my husband is, since he’s been trying to balance work and entertaining the kids (an impossible task!).

So excited about his Angry Bird!

So excited about his Angry Bird!

Mateo has been slowly winding down his ABA therapy hours. We have gone from six hours a week down to three and he only has one week left until he graduates. He is definitely ready for ABA to come to an end, but it has been such a big part of our lives for over four years. Therapy is all Mateo has known since the age of 2 1/2. And the thought of ABA coming to an end is huge for all of us.

We still face practically daily meltdowns. Usually over him working on his summer homework packet or us running out of milk, or yesterday the pizza guy delivered the wrong pizza which resulted in a 10 minute meltdown. Maybe I am so used to them now, that they don’t phase me as much as they used to. Don’t get me wrong they sometimes result in me polishing off the last of a bottle of wine or taking an extra long workout. But I feel like we are learning how to manage the meltdowns better.

A good example would be the pizza meltdown that occured last night. So here is a little background. Mateo’s favorite food in the whole world is Pepperoni Pizza. Now let’s be clear- it’s just pepperoni and cheese on a pizza. Don’t add any herbs, or olives or anything else because he won’t touch it. We had a long day yesterday and my husband decided we should just order pizza for dinner, and I was in complete agreement. We were hungry and of course the pizza place was backed up, and it took a long time to finally get our pizza to our house. We open the box to find that they delivered us a plain cheese pizza. Now many kids would just eat it- it’s pizza right? And if they are hungry enough they will eat it. Well Mateo has one thing on his mind, that he will be eating his FAVORITE pizza in the whole world and when we opened that box, it was more than just a disappointment it truly breaks him.

So the tears begin and the sobbing and he doesn’t understand why they would bring him the wrong pizza. And he feels very anxious because it’s the only thing he can think about eating at this point. He will not eat the cheese, he will not eat anything and he was very hungry by this time. It is unlike anything you experience with children who don’t have Autism. It’s not like a temper tantrum when a child doesn’t get their way. It’s like everything around them crashes down, and they are not sure how to escape out of the dark. Like total tunnel vision. At least that’s my perception, I wish he could tell me how it feels for him.

So I sit with him and after many tears, I hold him and say to him, “I know you are upset that they brought the wrong pizza, and that’s ok. But we caught the guy in time, he’s going back to the restaurant and picking up the right pizza right now. You can sit at this window and keep an eye out, and let me know as soon as he gets here with our pizza.” And he lets out one last sob, and he waits, and he waits. He will not leave his station at the window.

The pizza guy is back within about 15 minutes, and Mateo happily eats his pepperoni pizza. And all is right with the world. Well for now at least.

So, a ten minute meltdown in one evening really isn’t that bad in the grand scheme of things. He has been emotional lately as well. He knows that ABA is ending, summer is ending, school is starting, and all of this equals a LOT of change for him. And change is hard, very hard. So we will see what August brings. But for now I am going to enjoy the last little time we have together for pool days, lake days, movie days and chill out and do nothing days.

So cool for Pool Days!

So cool for Pool Days!

Posted in Daily Stuff, Therapy, Vacations | 2 Comments

An end of the year letter from Mateo’s teacher.


So Mateo’s 1st grade teacher was out on Maternity leave for over half of the year. It was a difficult transition for Mateo, she is a very wonderful teacher and Mateo cares a lot for her. Another amazing teacher stepped in, but he refused to communicate with her for the first few weeks and we were worried. But sometimes it just takes Mateo a little while to warm up to new people. He has to test you out to make sure you are in it for the long haul.

Here is a letter I received from her last night. This is progress! This is wonderful! This filled my heart with so much happiness:

He has come such a long way and I’ve only seen less than a year of his growth!!! I am going to miss him so much…
He has been full of jokes the past few days. He’s learning that his “comments” get a rise out of the class and yes taking full advantage of it. Today he proved to me just how much he knows the class routines. We did not do a math assignment that we do every day before choice time.
When I started dismissing the kids for choice time Mateo shouts out…wait what we aren’t doing minute math? I said nope not today. He jumped up and shouted YES. I couldn’t help but laugh.
One last thing, If Mateo wants to see me or talk to me at all please know my door is always open. Even over the summer!!!!
-From Mateo’s amazing fill in 1st grade teacher

Here is to a great and relaxing summer for all of our kids! Who’s ready for the pool?

Our favorite summer spot!

Our favorite summer spot!

Posted in Daily Stuff, Progress, School | Leave a comment

Today was the often dreaded I.E.P.


I do not think I have made it through one IEP without crying before, during or after.  I think we have the most painless IEP of any IEP anyone could dream of, but talking about my kid’s education, their future, their accomplishments and their struggles stirs all of the emotion inside of me.

For those of you who do not have a child with any sort of developmental disabilities an IEP is an Individualized Education Plan that lays out the services your child will receive for the year. To the average person that sounds pretty painless. But unfortunately the public system is so skewed that it is anything but painless for most parents. It’s weeks of stress before, during and after until you sign in  your own blood, sweat and tears to finalize it.  It involves  teachers,  principals, the regional center, therapists, consultants and sometimes lawyers. The IEP has become a battle ground and war zone pinning parents against faculty to get the services our children need.

We are lucky enough to attend a wonderful Charter school where the dreaded IEP is not a battle ground, but a conversation. It is a dialog between our team.  Our team consists of a Special Ed Coordinator, principal, teacher, therapists, our home ABA company and my husband and I. And we sit at a table, and we talk about Mateo’s accomplishments ( pages of accomplishments) and we talk about his struggles, we talk about his fun personality, and about his ability to make everyone in the room laugh. And in my IEP, everyone in the room knows Mateo. There are no strangers telling us what’s best for our child. They are the people that know his strengths and where he needs help. We laugh, and smile and of course I cry. Not because they are against us and fighting our suggestions, quite the opposite.  In our discussions of his transition I tell them I am concerned about the 2nd graders in this new class.

You see, Mateo has had the same class for Kindergarten and First grade. They all know him and his silly personality, they know he stims when he’s excited or anxious, they know he may break down when frustrated, they support him and love him for who he is. But it’s all about to change. No longer will they all know Mateo.  They will be bigger and let’s face it meaner than most Kindergartners. And I worry for him. I worry a lot! I worry they will be mean to him, and hurt his sweet nature. So as I tell the team my fears, I try to push the tears back. The Special Ed Coordinator is holding my gaze, and trying to be supportive but the tears fall anyway.   I feel embarrassed, but my kids mean everything to me and every worry and fear I have is for them.

But we develop some strategies and ideas together. We are setting up meetings with his new teacher to develop a transition plan.  We are deciding how to handle the new students and discussing Mateo and Autism.  Our goal is to create a positive and happy environment for him for the next two years. Not just my goal, it’s the team’s goal.

My wish is that all of my Autism parents out there could have a TEAM for their IEP.  I wish they could work together on the computer typing up the goals for the next year, providing input and not us versus them.  I wish that an IEP was always in the interest of each child and not cause so much strain and stress on the parents.  I wish it was a place of smiles and laughter and not a battle ground with blades drawn and names signed in regret or anger.  I am here to support you all as we wind down from IEP season.  You are all the warrior parents who have gotten us this far, and who knows, maybe together we can change the system to be about the kids.

Posted in Autistic Community, IEP, School | 6 Comments