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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Protecting children with Autism


If you can share one blog I write ever, please make it this one. It is a very important message that needs to reach the families of children with Autism. There have been some tragic stories out there this week, I don’t really feel like I need to write about the specifics here, but I do feel that the lives of children with Autism are in serious danger. And that is something that worries me!

I want the friends and therapists of parents of children with Autism who are worried about a child’s safety to come forward. If you see a parent on the edge, I want you to step in and do everything you can to help that child. So many times these children do not have a voice and sometimes they do not have a parent who is an advocate. You can be that person and you can possibly save a child’s life.

I do not know what to do to save these children from their own family. I wish I had an answer, but I feel that this is a good first step. Someone near this sort of breaking point to take the life of their child must be showing signs. Do not be blind to these signs, do not make excuses for someone. My heart has been breaking for all of the children we have recently lost to the one person who should have been taking care of them. The person that should have been their advocate, the person they trusted the most.

Parents, I want you to please take caution. If your child cannot speak or communicate well please make sure they have some sort of identification on themselves every day.

Today a friend of mine was at home when his sister brought over a child with Autism. A child that she found wandering by himself, franctically crossing the street. The boy only knew his first name, not his last or his address or phone number. He had no identification on him, no backpack, nothing. He said his parents names were Mom and Dad and that he didn’t go to school, but they later found out that he did. He was extremely disorientated, he was found wandering the streets scared and alone. We believe he got off at the wrong bus stop and didn’t make it to school. He said he had been out wandering for a while, it must have felt like hours to him. He ran to her car asking for help. Imagine if it was the wrong persons car that he ran to? Thankfully it was not. Thankfully the cops kept talking to him until they were able to figure out his school. Thankfully he is safe. But so many times this story doesn’t end this way.

Although our kids can get in a routine and we all feel confident that they understand how to get to school, because they have done this same routine for months without incident. It only takes one incident, one off day. It’s critical that if our kids can communicate their full name, their address and our phone numbers if they have the ability to. If they knew it three months ago, that doesn’t mean they will know it today. Keep going over it. Don’t ever stop. Not at age 10 and not at age 15!  If they cannot always verbalize it they need to have some sort of identification whether it’s a med-alert necklace or bracelet. Something they cannot remove.  I think we see how well our kids are doing and we forget that their brains are wired differently. That one distraction, one thing off on a bus ride could leave our child wandering alone on the streets.

Mateo wandering off is one of my biggest fears. I worry on the days he says he doesn’t want to go to school that he will find a way to escape. That he will think he can walk home to play Minecraft. So I bring this up with him. I tell him NEVER leave school without Mom or Dad, you know that right? Never try to walk home alone, it isn’t safe. I try to drill these thoughts into him, but it could just take one off day.

Please try to protect these kids. Not everyone is as lucky as so many of the children I know, who belong to loving homes that advocate for services. Not every child has a parent who would always find a way to keep them safe. Not every child with special needs is born into a loving home. It is heartbreaking, it tears me up and I want to save them all! But this is all I know how to do, is spread this message out there. Having a child with Autism is not the end of the world, but a beautiful beginning. We can see the world through a whole new set of eyes. There are many stressful times along the way, but this beautiful person will make every stressful time so worth it. Autism is pretty amazing in so many ways and there are so many beautifully gifted people out there who have Autism.  Let’s all find a way to keep these incredible kids safe, together!

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A day of pumpkins, apples and the dreaded lines!


It was sunny and warm when we left home but as we approached our favorite fall tradition of travelling up the hill for a day of pumpkins, apples and crafts the temperature did drop a bit. I had told Mateo to wear pants, but the struggle in just getting him out of flip-flops and into tennis shoes was hard enough. I figured it would be warm there, but when the wind picked up it was quite chilly. I was worried that our fun-filled day planned ahead may be more challenging than I anticipated.

We arrived around noon and it was busy, but not as bad as years past. We decided to stop at the place with the train for lunch and to buy some apples. Mateo was so excited to be there and although he was chilly, he hardly complained. I felt like I had a terrible dumb Mom moment for not even grabbing him a jacket. The change of seasons has always been challenging for him. The routine of shorts and a short-sleeved short with flip flops is his go to outfit. Then the seasons change and the transformation into long-sleeved shirts and jeans is a difficult one for him. The same thing occurs when Summer comes around when switching to shorts from pants is never easy.

So we powered through and kept going. Mateo asked if we could go to the Pumpkin Patch next and the wind was dying down so it was a good time to make our way over there. Since it was the week before Halloween, as expected many of the pumpkins were picked through. But Mateo excitedly traveled through the Pumpkin Patch seeking out the perfect pumpkin. He picked out a slightly green one since many of the bright orange ones had been starting to get old and mold.  I asked him if that one was going to be a Zombie or Creeper maybe?

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“No, Mom.” was all he replied.

Next we came to Mom and Dad’s favorite spot  to stop along our annual trip, the Brewery. The Brewery has to be the most crowded place of the day. A table opened up and Reuben and Maya snagged it and Mateo followed me into line. The line to get drinks was very long. I encouraged Mateo to go sit with his dad and sister while I waited in line, but he insisted on staying with me.

A nice man in front of us noticed Mateo’s Minecraft shirt and asked, “Do you play Minecraft?”

I waited for a response, and it took a while and Mateo finally responded, “Yeah.” Eyes turned down the whole time, his head pointed at his feet with his response.

That was about all this stranger in front of us would get out of him. But he went on asking me what I thought of Minecraft. I told him that I am a Web Developer and really love it for my son. He’s learning early programming commands and is getting really good at typing and writing. He told me he was an architect and how it’s so good for kids to learn spatially like that. How they are able to see and understand 3 Dimensions so much easier. We had a long conversation in line. He had slightly older kids. As we were talking he kept watching Mateo.

The line was very slow moving and it was making Mateo very anxious. His stimming had taken off. He was rapidly patting his head, one hand then the next like a bongo drum on the top of his head. He anxiously jumped up and down swirling his hands in front of him. The man just watched briefly, I could tell he was curious but didn’t want to offend either of us. I wasn’t sure if I should just tell him about Mateo having Autism. It didn’t relate to our conversation, but maybe I could have helped spread some Awareness. Right now Mateo is very self-conscious about things. He is completely aware of his behaviors, but there is nothing he can do, he needs and has to stim.

Today as I reflect on it, I really believe I need to talk to Mateo more about it. Ask him if it’s ok if I talk to people when they seem curious about stimming and Autism. I don’t really know what his response will be, he hates me talking about Autism. I feel it’s so important to talk about it though, it’s not going away, it does not define him but it’s part of him.

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We finished at a fun little petting zoo. The alpacas, goats and sheep were the perfect way to end a fun family day! Mateo really enjoyed everything once we were out of line. Made me think about Disneyland and how we haven’t been back since they changed the pass rules. Lines have always caused him a huge amount of stress. Well we will cross that bridge when we come to it.  I am curious though how other parents or individuals with Autism handle strangers and bringing up the topic of Autism.

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A day of pictures


I decided that it was time to revisit the family portraits. The photo’s filling my home were from many Christmases past and I decided it was time that we take another shot at them.

Mateo has been very opposed to me taking photos of him lately. Part of it is due to being an 8 year old boy and part of it may be the fact that having Autism makes it very difficult for him. It’s not natural for him to look at faces or a lens pointed at him. It’s difficult for him and I know that. But it doesn’t change the fact that I want his beautiful face up on my walls.

I decided to book a photographer and give it a shot. A friend of mine gave me a recommendation and I really loved the work she had done for her so I booked her for some pictures. I decided it was a much better investment that the horrible school photos that want to charge at least $40 a kid for one horrid shot of them in their uniform.

So we dressed up and met the photographer in a park on a Sunday. It had been a long weekend for us. We had spent Friday night hosting a dinner party for friends which included Mateo’s old ABA Tutors. Mateo’s relationship with these two special people is one that cannot be matched! My house was once again filled with joyous shrieks as they chased each other around the house. The played Minecraft and Mateo dressed as Steve with his huge Cardboard head as he chased his friends through the house yelling that he was going to get that Skeleton, Zombie and Creeper! The pure joy on his face really made me miss the years of ABA spent with some incredible people! Obviously, Mateo will never forget either.

And Saturday we went to a friend’s house and the kids played and made S’Mores and had a great time. Sometimes I forget about Mateo and Autism, he is doing so well and can handle so much that it escapes me that a packed schedule is not the best idea for him. But he seemed fine on Sunday to my relief. We dressed in our clothes for the photos and Mateo asked me, “Where are we going Mom?”

“We are going to a park to take some pictures!” I tried to sound as enthusiastic as possible, yet that doesn’t seem to persuade Mateo anymore.

“I don’t want to do pictures!” he sat at the computer with his brow furrowed, arms crossed in protest.

“But it will be fun! We will be at a park, we are all going to do it. It won’t take long!” I kept trying to convince him. But his brow stayed furrowed and his arms crossed.

I took a deep breath and we got in the car and I hoped for the best. I didn’t even warn the photographer I thought as we drove out to meet her. Mateo is at the age now where if I mention the word Autism in front of him he gets embarrassed and even more stand-offish. So I just let her know that he was apprehensive.

Thankfully she had bribing cookies for him. And before our time was up, he became much more comfortable and laughed at her jokes. But what I love so much of the photos that I have seen so far, is that she really captured everyone. She captured Mateo’s furrows and coy smile. A big fake grin is definitely not him. He looks thoughtful in some and others like he’s about to cause some trouble. Maya looks like the sweet and loving girl that she is, always the protector and care-taker.

I couldn’t be happier with the day! I am very proud of him, and although it was something he was very against, he pushed through and did great. His sister coaxed some great expressions out of him. Always the rock for him to lean on and always there to help him succeed, she is truly my tiny heroine!
thekids

Now if I can get myself to actually mail out the Christmas Cards this year, that will be a true Christmas Miracle!

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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.

Posted in It's Autism | 1 Comment