School good-byes


As the school year is winding down and we are wrapping up our IEPs and all happily awaiting a summer schedule without the stress of excessive homework (believe it or not my kids still get homework over the summer!), tears and arguing over not finishing a video before school, and the never ending hunt for the vanishing belt. I feel like it’s a wonderful time to reflect on this school year and truly how far Mateo has come.

We did have some struggles this year. His teacher left on Maternity leave and after a string of subs Mateo was beyond frustrated, well to be honest we all were. His life was in a state of flux. Never knowing who would be showing up to class and it left him with increased anxiety and of course behaviors in class. His grades slipped in some places and we all felt pretty miserable for a while.

But things made an amazing turn and there was some amazing progression. Mateo has always really struggled with writing. Hand-writing is difficult for him, it takes all of his concentration and his fine motor just never quite can catch up to his mind. So the task of writing a few simple sentences would take all of his energy and patience. But this year after we told them about how well he types on the computer, the school allowed him to begin doing his homework and story writing on the laptop.

His writing blossomed. His stories became detailed and amazing. He even earned a Writer’s Award. I couldn’t be more proud of him! Something he dreaded is now something he really enjoys.

Over the past two years Mateo has had an amazing team of incredible instructors who have helped him thrive and grow and be so successful. I adore his teacher, we have had four incredible years with her between both of my kids and I am going to miss her immensely. Her kindness and understanding always provided Mateo with a safe place and a school family that has helped him grow into the incredible kid he is.

And we don’t know what we would do without his amazing Special Education Specialist! This was her time with Mateo and she has brought out a lot in him. Her compassion for him shows so much in her decisions that she makes, she always has his best interest at heart.

His speech pathologist is also incredible and has been working with him for a long time. She even started a Lego Club to help the kids communicate and work together! I am truly blown away by my school and the real passion they have for helping our kids. They truly care about his success and are always available to answer my questions. We have emailed at midnight and at 6am before, so I know my kids are always on their minds.

Thank you so much from the bottom of my heart for all that you do for my kids! I just want you to know how much I appreciate it all and I know how hard you all work!

Mrs B- we are going to miss you sooooo much!!! You were such a gift to both of my children, and I will never forget all that you have done!

I am pretty nervous about 4th grade next year! It’s going to be a huge change, but knowing I have an amazing school does help alleviate a bit of the stress. We are definitely ready for long days by the pool and lots of summer adventures.

Our first day at the pool this season!

Our first day at the pool this season!

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Happy 9th Birthday Mateo!


Dear Mateo,

I can’t believe that you are 9 today!! Years go by faster and faster and moments are truly to be treasured. Every year I like to write you Birthday messages and hope that one day you will look back and enjoy reading them. I think every year I write this, but you have truly come so far in 9 years.

Mateo at 3 years old.

 

When you were three years old you had the schedule that most adults have. 40 hours a week of work, including one on one therapy, speech therapy, occupational therapy and preschool. While most kids just had a few hours of preschool and naps, you worked very, very hard. It was very frustrating for you at times, we demanded so much from you, but you really conquered it all and blew everyone away with your progress.

Hanging out in Midtown

Hanging out in Midtown

With each year you have grown into a more incredible young boy, and have shown me what’s really imporant in this world and for that I am so grateful. You have taught me the importance of taking the time to see the world from another person’s perspective. I have learned how every person has something to say, whether or not they have the words to say it, and that the real importance is taking the time to listen and to understand.

You amaze me every day. You have such strong determination and always know what you want. Whether it’s the glass of chocolate milk or the latest Resource Mod for Minecraft you know what you want and you figure out a way to get it. I know that this will get you so far in life, whatever path you choose to go down. And I want you to know whatever you decide that you will always have your dad, sister and me standing by you.

You brighten every day with your laugh and hilarious personality. I am amazed by the incredible things you create in Minecraft and how you share them with the world on YouTube. You are a very smart and funny kid that really impacts every person he meets.

Love that smile!

Love that smile!

We have a really fun summer planned, and I look forward to so many wonderful times we will share this year. I hope that you are as happy as you make me! Thanks for being my awesome buddy, I could not be more proud of you!

Love,
Mom

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Autism Acceptance and Understanding for Mateo


I read a post on Facebook that said, wouldn’t it be nice if we celebrated Individuals with Autism in April instead of just making it about Awareness. I loved that idea, I have always tried to make Mateo’s Story about celebrating him and all of his accomplishments. April has been Autism Awareness month for quite a while, and during this time I have seen some horrible write ups in the past about Autism and some incredible ones. I would like to see a lot more of the empowering and encouraging ones. But Autism Awareness should really be Autism Acceptance and Understanding, not just about numbers and figures but about the individuals.

I know that Autism is not about puzzle pieces of bright colors, or rainbows. A blue light doesn’t truly represent the struggles a person with Autism face or the battles we take with school districts, insurance companies and doctors to get the support and services needed. It is hard to find anything to truly represents the person and their family, but we need a starting point. We need a way to build our community to include our friends and neighbors, the strangers we come into contact with every day and the people making the hiring decisions. A bridge to bring us all together in understanding Autism and Neuro-diversity.

Mateo and two of our amazing friends!

Mateo and two of our amazing friends!

Autism is not a disease. I do not have Autism so I cannot give a viewpoint of anything other than a mother of one incredible kid who has Autism. I wouldn’t change one thing about my son, but I would love for the world to better understand him and the difficulties that he faces each day when he goes out into the world. I would love for others to better understand so that they can stand up for him against the cruel people in this world, that may bully or taunt him. Statistically speaking children with Autism have a much higher rate of bullying. I want as he grows up that he finds a peace with his diagnosis and for him to know that I will always be here for him on his journey.

Mateo was diagnosed with Autism at around 2 1/2 years old, although we suspected it before his second birthday. He was always a very intelligent little guy with few words. He figured out the DVD player by the age of 18 months. He’s always been drawn to technology and building things. He loved building amazing designs with his train tracks around the house as he played with his Thomas the Train set, and he was always very imaginative. Today he builds amazing worlds in Minecraft where his love for building and technology have helped him to be very advanced for his age on the computer.

Mateo in Gamer Mode

Mateo in Gamer Mode

His neurologist actually didn’t believe us when we told him how Mateo liked to play pretend since that’s generally not a trait of Autism. I learned early on not to follow those lists of Autistic Traits. Autistic traits seem to come and go for Mateo and every person with Autism have very unique characteristics. Some are verbal, others aren’t. Some people have a lot of self-stimulatory behavior like Mateo does, others do not. Some are wonderful at Math others at Art. Although every individual on the Autistic Spectrum have very different needs, but there are many similarities across the board. Most have sensory issues where bright lights, loud sounds, too many people talking in one room can cause anxiety and stress. Their filter is very different as well as how they process everything around them.

My wish for Mateo is happiness, what we want for all of our children, and a world that accepts him for the person he is. A world that is understands that his uniqueness is also his beauty. That he can get overwhelmed at times and you may need to slow down when you speak to him.  He doesn’t need to look you in the eye to indicate he is listening to you, he is absorbing each word. That as he grows up and needs a job that his quirks don’t indicate his abilities, that you can look past those to see all that he can offer. That his lack of words do not mean he is not listening to every word being said. Quite the opposite, he hears and understands it all. He is sensitive and his feelings get hurt very easily and his biggest desire is to not stand out or be excluded. He wants to fit in, and doesn’t understand why you may not have the same likes and interests that he does.

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From the Autism Unveiled Project an individual with Autism wrote, “Autism is my destiny. Destiny is to seek – not to fight against. We may call the same word ‘destiny’ as ‘luck’ or ‘fate’. If autism is my path, let me walk it well, let me understand my life walking my path,”

What a powerful statement. I wish for Mateo to find his path wherever it leads him and know that we are here supporting him on his journey. That he finds to accept his Autism within himself. I will always  be here to advocate for him along his journey, and to help him find that voice to eventually advocate for himself. I also hope that through Mateo’s Story we bring a little more understanding about individuals with Autism and with that we eventually bring Acceptance and Inclusion.

Posted in Autism Awareness Month, World Autism Awareness Day | Leave a comment

Mateo, an award-winning story writer!!


Mateo
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Minecraft

     I am going to tell you about Minecraft. Minecraft is a newer game. It is multiplayer or single player. Minecraft is fun for everyone.

     I am going to tell you what Minecraft has. It has pigs, cows, sheep, and chickens. Minecraft has hostile mobs who try to kill you. It has zombies, skeletons, creepers, spiders, and endermen.

     I am going to tell you about how Minecraft is played. Stay away from hostile mobs by crafting swords, arrows, and armor and bows. In minecraft, you can also get weapons by killing zombies or skeletons. In creative mode, you can’t die or get hungry. You can get thirsty. I hope you learned about minecraft.

The other day Mateo came home with a certificate for Writer of the Month. WRITER OF THE MONTH!!  Check out his great story above!

Mateo in Gamer Mode

Mateo in Gamer Mode

 

Mateo has struggled with writing for a long time. Communicating his thoughts is very difficult, and he tends to try to write the least amount possible.  His hands get very tired and he has always told me that he HATES writing.

But something changed, in the past month the school has decided that Mateo can now type out his writing projects. He types me letters each week about how his week at school went and he types in full sentences which were so difficult for him when he had to write them out. He has come so far, and I could not be more proud of him and all of his accomplishments. Mateo types really fast on the laptop, it has come very naturally to him. He uses two hands and is getting better all of the time at it.  I am thankful to have him in a school that works very hard to help him to achieve and makes the accommodations necessary to help guarantee it.

He has also started a YouTube channel where he makes videos and talks everyone through what he is working on in Minecraft. This is also huge for him,  he’s communicating to the world.  Here is a video that where he has built this Five Nights at Freddy’s world on his Minecraft account:

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Skateboarding with heart


There are not enough kind words for this wonderful organization that has given Mateo so much. I have been wanting Mateo to try skateboarding for some time. His uncle had given him a custom painted board, but Mateo just didn’t have the interest and to be honest we didn’t really have the skills to get out there and teach him.

So when I found out about Skate MD, a local organization that helps kids with special needs learn to skate for FREE, I jumped on the opportunity. I was unable to attend the first clinic, but Mateo had a great time with his dad and his skate buddy. He was a bit apprehensive and held on tight to his skate buddy for the day, and tired quickly. So when it was time to sign up for the second one, I was so thrilled that he could have the opportunity to try it again. And I was excited to get to see it for myself!

And this time was much different! We had taken him out to practice after we realized how much he enjoyed it, and slowly he was building up confidence. As we got closer to Saturday, I kept reminding Mateo that it was almost time to go to the Skate Park again. I would ask him, “Are you excited to go skate again?” All I would get out of him was a yeah and a smile, but I knew he was looking forward to it.

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On Saturday we arrived a little early and Mateo was paired up with Geoff. Geoff is actually the husband of one of the co-founders and wound up being the perfect match for Mateo. The huge smile never left his face as he raced around the skate park. He began to hold on with only one hand and really build his confidence. Even after a couple falls, nothing would stop him. I heard Geoff ask him if he wanted to take a break for a snack or a drink of water. “No Thanks”, he replied, he just wanted to keep skating and he did for two hours straight!1508151_10153144874599578_3051997253238984412_n

He even paired up with an older boy and they had fun going down the ramp together. And when Mateo crashed, his new friend reached down and gave him a hand. I thought, that right there is what it’s all about! Mateo was not only having a great time interacting with his skate buddy but was also making new friends.

Mateo has a hard time with his coordination. Team sports like softball or soccer were always too difficult for him. I worried about the other parents more than the other kids, because they can be so competitive. I have put Mateo in track at school, but that is only for a couple months out of the year and I really feel that he needs more time outside and being active.

Skate MD had showed him that he can do stuff his peers can do, it has given him confidence, helps him with his coordination and allowed him to interact with some amazing people!

On Saturday Board Rescue, another great organization gifted all 25 kids there with a free new skateboard! Once they made the announcement, parents around me were wiping tears from their eyes. Having their children included in something so incredible is not a common occurrence. Many of these parents have put so much money and work into therapy for their children but rarely receive much in return. Seeing their children with a huge smile plastered on their face and feeling a part of something is a huge gift in itself. Being given a day with some exceptional people helping their kids and a free skateboard was just incredible. I don’t think this organization even realized what a huge difference they would make in our children’s lives.

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Mateo has been skating every day since and will continue to build up his skills. Maya has even showed interest and started trying to skate too! If you can help donate anything, this is a very worthy organization who is truly making a difference in children’s lives.
http://skatemdhh.weebly.com/

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Autism and the dreaded substitute teacher


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Change in routine is probably the hardest thing for children with Autism. We found out this week that Mateo’s long term sub was no longer his subsitute while his teacher is out on maternity leave. Mateo had built a really great relationship with his previous sub. She had been there since his teacher left last year and he definitely had a connection with her.

I think she let him get away with too much. Mateo has that effect on people, he can charm him with his big brown eyes and sideways smile. He never came home with a consequence on his sheet or even one negative comment. She always told me what a joy Mateo was to have in her class.

So when Mateo refused to go to school today. When he sank to the floor in tears begging us not to go. I knew the underlying cause. Sure he would prefer to play Minecraft or his latest craze Five Nights at Freddy’s, but there was more to the story.

His body went limp as he sobbed that he was sick and couldn’t go to school. Trying to pry him off the ground is much harder as he gets bigger, but the deep pressure hugs still seem to do the trick to calm him down. But there was no easy way to calm him down this morning.

It was one of those, man Autism really sucks moments. I know many people may say that their kids complain about going to school, that they will whine or possibly cry about it. But for Mateo the thought of school sent him into a downward spiral. The familiar smiling face wouldn’t be there to greet him. His sub may not know his signs of when he needs help, or know to give him a little more time to gather his thoughts. She may not know what stemming is. She may not understand why he doesn’t look at her when he talks to her. Maybe she hasn’t read his folder and doesn’t know he has Autism. Will it even be the same sub as yesterday?

I am grateful that his Special Needs Educator has been checking on him and giving me updates. She said she’s noticed he doesn’t say hi or smile at her when she passes him in the hallway like he used to. I told her that Mateo will show his stress in different ways. Signs like that mean something is wrong.

We are all hoping they find a good replacement soon until his teacher returns. Until then…. there may be many more mornings like today!

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Explaining loss and remembering Paige!


It was the first time we had to explain true loss to Mateo. Our very close friends lost their daughter on December 4th to an extreme allergic reaction, and still don’t know exactly the cause. I know many of you have children with allergies, so many children on the Autism Spectrum do, so I think it is even more important for me to share Paige’s story here. Paige was eleven and played much more with Mateo’s sister Maya than she did with Mateo, but our families shared many wonderful memories together.

Maya, Violet, Paige and Mateo (as Steve of course)

Maya, Violet, Paige and Mateo (as Steve of course)

You see Paige was a very unique and incredibly talented girl. She believed in always expressing herself in everything she did, a natural artist. She drew incredible pictures from a young age. I remember her sitting at my table sketching out incredible anime drawings at the age of 6, and I was blown away. She also embraced everyone as a unique individual and showed Mateo nothing but kindess as not just a friend to his older sister, but his friend too.

Every year we did the walk Paige and her family were apart of it!

Every year we did the walk Paige and her family were apart of it! She is the cute one w/the Minnie umbrella!

She raised money for the Walk for Autism for Mateo and participated in it for several years. She never treated him any differently and always was accepting of him. The loss her family feels cannot be matched, but we are truly are thankful for the many wonderful memories we shared with Paige. She brought light, art, laughter and a wild and electric energy into our home that will never be forgotten.

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So when we had to explain this loss to Mateo we were not sure how he would react or if he would understand. We explained that she had died, and Mateo asked, “What happens when you die?” We explained to him that she would go to Heaven and that she would be our Angel and watching over us all. He said, “Oh, Heaven, ok.”

Reuben and I looked at each other, so unsure if he truly understood. But we continued to talk about Paige and tell stories and relive our happy memories together. And on Saturday we attended a beautiful Memorial for her. The night before we explained that we were going to this Memorial to say good-bye to Paige. That she wouldn’t really be there, but since we didn’t get to say good-bye before, this was our chance. He said, “Because she’s gone right? She died?”

With Maya we can just use the words, passed on and heaven, but with Mateo everything is very literal. He needs the specifics, which is not easy for everyone else. So we attended the Memorial as a family and Mateo eyes welled with tears several times. The Pastor talked more of heaven and how we would again see Paige, and how she lives on in every one of our hearts and in each memory that we share. Reuben got up to tell the memories of our family and Mateo watched intently. He got to release a balloon for his fairwell to Paige. And again we talked to him the next day, Reuben asked him, “What’s something good to do when you miss someone you can’t be with?” and Mateo said, “Remember them, Remember Paige!”

The rainbow of balloons we released for Paige!

The rainbow of balloons we released for Paige!

Although our children with Autism may show their emotions differently, they are processing everything around them. They feel our sadness and may not sugar coat their words, but they can and do understand what loss is. The sadness is always quiet with Mateo, but I can see it, and I always try to talk to him about his feelings and emotions.

Camping fun/ Dance party!

Camping fun/ Dance party!

At the State Fair

At the State Fair

In Paige’s memory we would love to spread more awareness about the severity of allergies. Her mom and dad did everything right, they would never come to our home without their own stash of food, several inhalers, her nebulizer and lots of Benadryl. She had many allergies, I always said she should be our Bubble Girl! But you couldn’t hold someone so full of life away from playing with the dogs and kitties that made her break out in hives, or not go Trick or Treating just because she couldn’t eat or even touch the majority of her candy, from Camping when everything would make her itch and cause her asthma to flair up or from living each day to it’s fullest. That is how I will remember Paige and how I choose to honor her. Embracing each day and hugging my kids harder, treasuring each moment we share and by sharing her story with the world.

Beautiful Paige!

Beautiful Paige!

Please read more about Paige’s story here: http://www.gofundme.com/i2s0ls?fb_action_ids=10205554805259525&fb_action_types=og.shares&fb_ref=

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