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?


“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.


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!

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.

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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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