Hurtful words


Words matter. The words you say can truly effect someone without you even knowing. Sometimes in a positive way and often in a very negative one. A harmless YouTube video can turn someone from laughs to tears in moments when their diagnosis quickly becomes the joke.

Yesterday Mateo was searching through YouTube seeking out the latest Minecraft creations. We keep a close eye on this because many times there will be inappropriate language and images. Reuben was near by and Mateo was laughing and enjoying the kid’s video, and then Reuben heard the kids start to make fun of Autism. They were drawing goofy pictures and calling the images Autistic. Reuben told Mateo to hand him the iPad so he could see this video, but Mateo refused and turned it off. I wish I knew this video so I could leave a comment on it. So I could tell them what their cruel words and jokes did to my son.

Mateo started crying, he has a hard time with the word Autism, he has a difficult time accepting his diagnosis. His desire is to fit in and be like everyone else. It had been a long time since we had the discussion about Autism and what it means to be Autistic. So again we talked about it. We told him that Autism just means that his brain is wired differently. That Autism makes him process things differently, which makes him hear and see things differently than Mom and Dad do. But that all of us have different things about us that make us unique. We talked about those qualities.

But the tears continued to fall, in his heart he just wants to feel like everyone else. I felt helpless that I couldn’t paint Autism in a light that would make him feel proud. I don’t know if he will ever feel that way. I tell him how proud I am of him almost daily. But my words are not as strong as those of his peers and cruel jokes made on YouTube videos. No matter how many positive and caring words I say, nothing makes his pain of feeling so different go away.

I have seen Autism used negatively on Social Media, I don’t know why people feel the need to put others down as jokes.   They are hurting our already struggling kids who already feel so different and like outcasts in this world.  I honestly don’t think people realize the pain that they can cause, but I hoping to help spread some awareness to end this latest trend.

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Doing the unthinkable!!


I did the unspeakable today! I actually called our local Regional Center to cancel services. GASP!! Can you believe it? It’s truly unthinkable right? What was I thinking?

I will tell you what I was thinking. I talked to Mateo and I listened to Mateo. He is getting older and has a voice of his own and it’s time I begin to listen to that voice he fought so many years to use. After the triuphant success of one week at Summer Camp, I came to the realization that between school and track and other activities Mateo really is ready for the “real world”, and has been for some time.

He was no longer benefiting from his Social Group, he was not enjoying going every week, in fact he dreaded it. He had a wonderful therapist for quite a while and she recently left.

His replacement actually asked if Mateo was ok and if everything was ok at home (when speaking to our friend who took him weekly) because he seemed non-responsive today. Excuse me new therapist, have you worked with children or people with Autism at all before? You are new, he has a new group, and you are wondering why he is not communicating with you?

Well for me that was pretty much the last straw, but we (Reuben, his respite worker/our close friend Shawnta and I) had talked about ending Social Group for a while.

So as Mateo snuggled by me on the couch last night I decided to ask him.

“Mateo do you like Social Group?”

He laid beside me, eyes looking down at his hands as they fidgeted and said, “No”.

“Do you think you are ready to stop going?” I asked.

Still looking at his hands he replied, “Yes.”

The important thing about all of this is that we need to replace Social Group with another social activity where he can connect with other kids and socialize, but doing something he enjoys. We had talked about programs like 4H, Karate or Gymnastics. So I wanted to give Mateo the choice.

So I said, “What do you want to do instead? You could work with animals and do projects in 4H, do Karate or Gymnastics?”

“Work with animals,” he replied happily. Well that answered that.

It is obvious that he is ready for something new and that he has officially outgrown Social Group. I can’t believe I called the Regional Center to ask them to stop services. I never thought I would do that, but I think it’s time to let Mateo’s voice be heard. Social Group was great for him, but he’s ready to take on new challenges and learn new things, meet new kids. The thing I liked about it was him spending time with other kids with Autism, but there are other activities in the area we can attend on our own.

And I am hopeful that some other child will now benefit from those services that Mateo was no longer benefiting from. Hopeful that the money will be directed to a new child without a voice and without the skills to communicate to their peers. Here is to another huge milestone!! I am so very proud of that kid!

Mateo loves animals of all types! Here is making a friend!

Mateo loves animals of all types! Here is making a friend!

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Summer Camp Surprise!


So we decided to enroll Mateo in a Summer Camp, it was reasonably priced and I only had to enroll the kids in one week at a time. Another HUGE selling point was that Maya was in the same age group and could be put together with him.

It says that it is an active camp that is based on staying healthy and keeping active. I really had low expectations for the cheap cost. I imagined the kids just playing some kick ball at the park and that’s about it.

It started the week right after school and Mateo was adamant that he DID NOT WANT TO GO! I was prepping him the week before, like I do with any new activity we add to his routine.  He kept telling me that he did not want to go and the morning of he seemed a little upset about it.  So I was very worried when driving him over there.

On the online form I had mentioned that Mateo has high-functioning Autism and may need some extra direction, and that he would definitely need to be with his sister.  Once we arrived he looked nervous.  We approached his Team Leader who was assigned to them for the week and made introductions. He told Maya and Mateo that they could go join the other kids playing freeze tag or just hang out with him. Maya ran off and Mateo stood by.  I was nervous to leave.  I let his Team Leader know that Mateo has Autism and if he has a hard time to just call us.  His Team Leader looked slightly concerned but quickly said not to worry that they were going to have lots of fun.

So we decided to leave him there and see what happened.  And like usual, I was a nervous wreck at work as I waited to hear how it went.  The Summer Camp is only from 8-12:30pm so I was hoping he would be ok for the short time.

To our amazement he LOVED it!! He had a great time the whole week.  They did not spend the week playing Freeze tag and kick ball.  They actually learned Karate, did KettleBells, Fencing and more! I was more than impressed. cutiekids

Today they did the Hunger Games and Maya said Mateo did amazing and so did the volunteers. They all gave him high-fives and told me how great he did.  I excitedly signed them up for a couple more weeks!

I have a theory on why I think Mateo liked it so much.  Not only are the activities great for him and his Sensory Processing Disorder, but this was the first time I sent Mateo somewhere without an Aide or anyone there to keep an eye on him. He got to be independent and play with kids his age and older who don’t know of his diagnosis or treat him differently.  I know how important it is for him to just feel like every other kid his age.  And I think it’s time we start letting him make more of these decisions and giving him more independence because he obviously can handle it.

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The unexpected IEP


Mateo had the big IEP today, the triennial IEP! These IEP’s are given out every three years and involve putting the child through a ton of tests to see where he is academically, socially, physically to grasp an overall picture of how your child ranks to children his/her age. Mateo’s last one was before entering Kindergarten and involved me taking him to a psychologist for several occasions for rather long sessions, as well as intense evaluations delivered by his Occupational and Speech therapist. And Mateo came out with many strengths and deficits and a school psychologist that ranked him very high on the Autism traits scale.

Mateo is doing well in school, he doesn’t have a lot of behaviors, he stays focused, is advanced in Math and really improving in his reading and writing though not at Grade level yet. He amazes us all in how well he does and how hard he pushes himself.  The room was filled with familiar faces today, people that have been with Mateo for the past year, two years and three years at the school except for one, the school psychologist they brought in to evaluate him.  She spent a total of two 30 minute sessions with him in the past week. That was all.

We sat through the long IEP and many praises were said of Mateo’s accomplishments in the past year. We were all so happy to see how much he has done, and how hard he has worked.  Much of his scores are accredited to the hard work of the therapists as well and the excellent services he has been receiving for the past years.  There were still many things that Mateo scored below average on, many things that we knew he needed support in to be successful. None of the evaluations or his placement was really  a surprise to us.  We sit with him each day and do his homework, we have weekly chats with his teacher and follow up with his Special Ed Coordinator often.

The only real surprise of the whole session was what came out of the school psychologist’s mouth towards the end of the IEP. I will honestly say, I never expected to hear something like this, and I believe I left mostly in shock. She sat across the table from us and passed a list over  to us of 7 Autistic Traits. I wish I had the list, but I remember glancing at it and thinking yeah Mateo hits a about 4 of those right on, so what exactly is her point. There are no 7 perfect traits that each person with Autism will all share, which is why it is called a Spectrum Disorder. Has she seen the T-shirts that say, “If you meet a person with Autism, You’ve met one person with Autism.” This all happened in my head as a I looked at her wondering where she was going with this list.

Then she said to us, “How would you feel if we took this label away?”

And I instantly flashed back to Mateo’s diagnosis with another psychologist. The diagnosis that happened 6 years ago. When we sat in the office after a very long observation and evaluation and this psychologist said to us, you can’t ever focus on the label, you need to think of the services your son will receive.  He is young, early intervention is so important, and he has Autism. He said, he knew those words were not easy for us to take in at this time, but to trust him.  And it took a little while, but he was right. That diagnosis meant everything to Mateo.  He received so much from that diagnosis, he received 40 hours a week of ABA, OT, Speech and Social Groups that got him to where he is today. And through those 6 years, I have learned so much, and one of the most important things I have learned is to embrace Mateo and the Autism that makes me such an incredible kid! And how I have been trying to teach him to be proud of who he is and to never feel ashamed of being different or having Autism. And I wanted to blurt all of these things spinning through my head.

I think the look of complete shock and disappointment on my face resonated through the room as my Special Ed Coordinator looked at me and said “This is a decision we will be making as a group. No one person will be making this decision.”  And that no one will take away his academic services until we decide that he’s ready. And I said, I think we need to continue his academic support, I don’t think he’s ready. And she agreed, and the room agreed, except for the stranger in the room. She went on to say the goal is to move him out of special education eventually.  Sure, I understand that. Does not change the fact that my son has Autism? No! And you sitting across the room from me pretending to wave a magic wand after spending a total of 60 minutes with him to make is Autism label disappear is ludicrous.

He works so hard to get his brain to connect, put in so many hours to get where he is today. I could not be more proud of him! But a usually uplifting yearly IEP turned very sour to me in that moment. How dare she say those words after he has worked so hard to get there. After we have tried so hard to positively portray Autism, part of who he is, something he lives with every day. But to her I know he was money going out the door to pay for services.  And I know how to handle people like that. I fought the district year after year to get Mateo quality placement and the support he needed, I have no problems breaking out my Mama Bear claws and taking on a fight.

Thankfully no fights had to be fought this time, and we have some very caring people at that school that support us all. To them I am very grateful. They are all aware of how hard Mateo works each day and what an incredible kid he is. It was said over and over again in the meeting. They are all very proud of him. Thanks so much to them for that support!

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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!

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