Preparing for the Worst

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It’s something you never want to think about. Accidents. They happen. In fact, they happen so often we almost never prepare. With Autism Boy, we are constantly preparing. I telling you this, so you can prepare.

It has taken me nearly a year to be in a place where I could write this post. It was a brisk fall afternoon, I was sitting at my desk, in my cozy office and Autism Boy and Exhausted Daddy were on there way to my work to drop Autism Boy off for a bring your kid to work day event. At least that’s what I was calling it. Exhausted Daddy had an appointment and honestly just needed a little free time and I loved the idea of having Autism Boy at work. We were gonna do school work, have lunch, and maybe take a stroll through the gardens and watch the falling leaves. I was just preparing to head down to meet them outside when my cell rang. Exhausted Daddy  had a tone of desperation. “We’re not going to meet you. We were in an accident. The car is totaled.” My heart sank. My entire world was in that car. I had no details, just an overwhelming fear. Exhausted Daddy remained calm and relayed their coordinates and I flew out of my office.  I past both the traffic officer and medics on the way to the scene. I don’t want to say that I was speeding the mile to the scene but I flew faster than a jet plane. Mama had to get to her boys and nothing was gonna stop me.

I remember coming up to the scene and praying. I didn’t know the condition of anyone, whose fault, or what I would need to do. Shock was taking over. Exhausted Daddy was fine and walking outside the car. The vehicle that had rear ended them at full speed, was completely under the SUV. I hugged my husband and ran to Autism Boy. He was still strapped in the car, which was the safest place for him. Tears were rolling down his face. Although he had initially said he was fine, he was now complaining of pain. The ambulance was on it’s way.

Why am I telling you this deeply personal story. Weeks before the accident, Autism Boy and I started practicing what to do in different scenarios, including an accident. We talked about the need to stay in the car. An adult has to get him out. If Mommy or Daddy is not awake to stay in the car and help will come. We talked about what Mommy or Daddy would do after the accident. We talked about his emergency bracelet and how it reminds him and others who he is and how to get in touch with Mommy and Daddy. We looked at accident photos and talked about all the loud noises and strange motions that occur in an accident. We talked about all the helpers and what the helpers do.

Now was our moment to meet the helpers. Autism Boy and I rode in an ambulance that day as Exhausted Daddy stayed with the car. It was another thing we had talked about. We had recently toured a fire station and seen the firemen and ambulance drivers. They had made him familiar with all things in the rig and it helped. Autism Boy was fine that day, but only cause we prepared.

Accidents are something you normally don’t prepare for, but why not. In our home we prepare for all sorts of things, accidents, fire, tornadoes, and earthquakes. Having a few talks and showing a few pictures could change the outcome during any incident.

I have no doubt in my mind that Autism Boy didn’t run because of all the talking and practice we had done in the weeks prior to the accident. I know his staying in the car ensured that he didn’t incur additional injuries. I know that had my husband been injured Autism Boy knew where his bracelet was and who to show it to, to get Mommy called for help. I am thankful my family is safe and I hope you will talk to your family and stay safe also.

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Autism and the Big Bang Theory

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The Big Bang Theory (tv show, not scientific theory) is very popular with Exhausted Hubby and I. We have spent many nights cuddled up on the couch laughing as these geeks(I say only cause I am one) engage in life.

And it was all fun and games until The Big Bang Theory came to our house. Sheldon sleeps in our house. This year Autism Boy started to resemble Sheldon. Although loveable, he has a clear lack of understand of why society expects certain things.  I can’t say I blame him. I wish I didn’t have to conform sometimes but I have had to start describing things as socially necessary, so he could understand why we were going to do certain things. You don’t need to understand why, just do it because it’s socially required.

Now if he starts to claim a spot on the couch as his, I will really lose it.

Shaving

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It happened a few nights ago. At least that’s what I want to believe. All of a sudden my little guy had facial hair. A full mustache. Well the peach fuzz kind. Having started my life with my son alone, as a single Mom, this was one of the many things I feared. I have always feared those moments when a Dad would pull his little guy to side and guide him gently into manhood. I have feared the talks, the questions, and the sheer fact that there is so much I don’t know that I should be teaching him.

My first experience with this was with the cup. Not the sippy cup, the manly cup. The one that I had to go into the store to buy so he could play sports. The one that I had no idea what to do  with. But God blessed me with a trusting young man who without fear followed my lead and the directions I found on google.

Well, we are again about to cross another bridge. Autism Boy has facial hair. I am terrified. I have to teach this boy to shave. Exhausted Daddy has been trying to talk to him, but sometimes he just understands Mommy better. So together we are venturing into this uncharted territory. I have to ensure that he does this right. I have to ensure that it doesn’t end up like a scene from a horror movie.  So tonight, with my pint of Ben and Jerry’s I will sit down and explore the world of men’s grooming with google and my husband. My husband has tried to explain all these delicate matters to me, but the lotions, smells, and various torture devices scare me. I am so thankful that Exhausted Daddy is here by my side. But for all the guys out there who know a single Mom with a son……….have pity on her. She’s trying her hardest. She wants to raise a man. She wants to provide for him and doesn’t know it all. Be kind and pull her under your wing. She is probably too proud to ask or fears rejection when someone doesn’t have the time or energy to teach her what she needs to know to raise a young man. Please offer help. I’m sure they would both appreciate it.

The Mighty Two-Wheeler

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It is a right of passage. It usually happens when you are about 6 or 7. Whether it is a birthday or Christmas gift,you get a bike. Mom or Dad takes you outside, holds on to the back and within a short time, you have a newfound freedom. Autism Boy is like all neuro-typical kids. At 6, Santa brought him a bike and it sat. He simply wasn’t ready.

Well, Santa paid another visit 1 1/2 years ago and brought him a new bike. This bright, shiny red object has been the bane of my existence. It has caused more heartache than anyone ever intended. On Christmas day, we faced cold temps and tried. In fact, we tried all the time. Well, I finally quit. My arms are just not strong enough to hold Autism Boy in all of his 5’6″ frame and the bike. So I walked away a few weekends ago and decided to mow the lawn and just let Autism Boy do his thing with the bike. Well, lo and behold the boy did it. He rode the bike. My excitement could not be contained.

That week, I had been bombarded with social media posts and videos of my young nephew riding his two-wheeler at a very young age. And of course everyone was proud and as parents do, we compare. I felt awful. I know Autism Boy is awesome and so is his cousin.  His cousin was rocking it on the bike. I’m really proud of him, but I felt the ugly rear of a jealous spirit. I wanted the same for Autism Boy. But Autism Boy taught me to never stop believing. He never gave up. In fact, when he saw his younger cousin riding, it inspired him to overcome his fear and he accomplished riding a bike. Both of these accomplishments are great but not everyone saw it that way. I got a lot of backlash that he didn’t have the skill before now.

Everyone develops at his or her own pace. It can be hard to see our kids lagging behind but we need to praise them just the same when they do get it, no matter how old they are.

Thomas Edison, Autism Boy, and the Autism Question?

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It happened last night on the drive home from dinner. Autism Boy asked the dreaded question. So what is Autism?

I had all these thoughtfully prepared answers. As we drove along, I realized all those answers weren’t cutting it. He didn’t get it. Till I told him this great story about his idol, Thomas Edison.  You see Thomas Edison was very much like you, I started to say. Well one day his mother received a note from the school teacher.His mother’s eyes were tearful as she read the letter out loud to her child: Your son is a genius. This school is too small for him and doesn’t have enough good teachers for training him. Please teach him yourself. And that’s just what she did. She home schooled him.

After many, many years, after Edison’s mother died and he was now one of the greatest inventors of the century, one day he was looking through old family things. Suddenly he saw a folded paper in the corner of a drawer in a desk. He took it and opened it up. On the paper was written: Your son is addled [mentally ill]. We won’t let him come to school any more.

Edison cried for hours and then he wrote in his diary: “Thomas Alva Edison was an addled child that, by a hero mother, became the genius of the century.”

You see, Thomas Edison, was home schooled by his mother after performing poorly in the school. His mother refused to believe the teacher’s assessment that young Tom’s “brains were addled” (mentally slow). Clearly Tom was experiencing the world quite differently from his classmates. Just like those with Autism. Those with Autism experience the world differently. Thomas’ mother knew her son had the capability with great deal of nurturing and leadership, she gave him the basic tools to learn, both in the form of process and content; and empowered him to learn.

So what does that have to do with Autism?

Well you see you are like Thomas Edison. You experience the world in a different way. Noises, smells, textures are all felt computed differently in your brain. This sparked a tremendous conversation about how and why God made him the way he is and led us to why we home school. I told Autism Boy, that like Thomas Edison, he too needed the most special teacher God could provide with a custom education to unlock his hidden potential. Autism Boy loves home schooling and now he loves his Autism. Yes, he loves who he is. Sometimes it is challenging, but we all have challenges. Embrace them and don’t fear them.

 

 

Planes, planes and more planes

Follow the leader
The Air Force Thunderbirds (U.S. Air Force photo/Adam Bond)

 

Several months ago we had a major event in our life. Exhausted Daddy and Autism Papa were both proud members of the Air Force, so air shows are in our blood. However, they have never quite mixed with Autism Boy. Let’s look at the issue. Air shows are loud, full of strange people, crowded, full of strange smells and generally hot. Well, we have had a personal triumph. A close friend invited us all to a practice session for the air show at our local Air Force base. Honestly the thought had me freaking out, but I had faith. So on a hot Friday afternoon, with the wind blowing we all headed over to see the planes.

My friend, a Sargent with Air Force had arranged for us to see the practice without the crowds, noise and congestion which would happen then next day. Sitting on the empty spectator stands we got to watch the planes looping, diving, flying and swerving.  It was an amazing day. I was thoroughly impressed but my friend had another surprise in store for us. We met the Thunderbirds. Yes, the elite flying squadron of the Air Force.

Having never been to a real air show, I was so impressed, but even more so when I met these fine young men and women. Their professionalism and ability to interact with Autism Boy was amazing. I watched as a young crew member got down at his level and answered all of his questions. As he saw Autism Boy getting excited, his excitement grew and he took him on a tour around the plane. We have amazing pictures of the planes, crew and family all over Autism Boy’s room so he can share with everyone. Years ago this would not have been possible, but we never give up and constantly try to press our limits. Keep trying. You never know what you can do, unless you try.

Early Intervention Threw Us Out

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As an Autism Mommy I frequently see ads, articles and postings on Facebook about early intervention and how it will “Save the World” or some crazy claim like that. Now before I get to high on my soapbox, let me start by saying that I think that early intervention is awesome. It is a great start. Early intervention was a huge piece of the puzzle for Autism Boy and helped us to start to map out how we could best help him. But……..there is one huge flaw we need to discuss. Early intervention covers children who are roughly 6 months  of age to 5 years. Well, what happens at 5 years old? Will the autism simply go away because my child is no longer covered by the programs?

In our experience everything was golden during the early intervention ages. We had resources, support, care, and there was funding for all of those things. We felt like we had a team. People cared. But then Autism Boy turned 6. That was our hardest year. All of the programs he was in kicked him out. All the state, local and educational resources simply dried up. At the magical age of 6 he no longer needed resources or at least that’s how we were treated. We were on our own.

That first year felt like we were walking through Death Valley and the vultures were circling around us. It was the worst year for us. The isolation was overwhelming. Our cries for help went unanswered. The medical professionals were a joke. They didn’t have any answers for support since Autism Boy had surpassed the magic age. So what is the answer.

Well people, need to stop supporting early intervention. Yes, I said it. There are so many fully funded programs for the early intervention ages that we need to redirect our focus and develop programs for children 6-18  years of age. Programs that help children after the early intervention age are few and far between and we need to correct that. It’s time we look at support services for children of all ages.  I challenge you, the next time someone asks you to support an autism program and they start their sales pitch with “we support early intervention”, ask what they do for older children and adults. Be the change. Help individuals at all ages.

Back to blogging

dream-beautiful-dreams-come-true-eiffel-tower-favim-com-761583After nearly a year away from the blog I am back. Sometimes we all need to take a step back and reexamine our lives and adjust to where we are. That is where I found myself a year ago. So….. where was I. I was an overworked, stressed, mama who wasn’t enjoying her life. I had lost my dream. I was just existing and not thriving.Something had to change.

So about a year ago I sat down wrote down what I wanted my life to look like. I realized with a blank sheet of paper that I can control what my life looks like. I decided I needed God to play a larger role. My spiritual life was lacking. So church now takes up a larger space in my life. We are praying more, doing bible study and living our life as He would want us to.

Secondly, family.  I took a long hard look at my family, immediate and extended. I realized that a lot of time has been wasted with people who don’t really care about me. If I quit calling, they didn’t pick up the phone. If there was an emergency, they weren’t there. I decided it was time to purge those who aren’t really part of my life and to quit making excuses for people. They are grown-ups. Let people reap what they sow. I didn’t have any big dramatic show-down with anyone. I simply let relationships that were holding me down go. It was liberating.

Lastly, I decided to dream again. As I sat with my blank piece of paper I wrote about all the things I wanted to do. Buying a home, reading a book, going on a trip. I wrote how I wanted each day to feel and what I needed to do, to make it happen.

As a side challenge I also did this with Autism Boy. He has grown and matured so much that I needed a better plan for him. I asked him to identify what he thinks are his biggest challenges and I also wrote what I felt were a few areas for growth. We compared lists and  wrote down a plan with him that directs his activities and growth areas towards his interests. Autism Boy is excited to be trying new things.

All too often from special needs parents I hear how hard life is, that it will never change and the misery that they are choosing to live in. Not me. Life is short
. I am choosing my destiny. I am choosing how each day will go. Choose how your day will go.

Comfort Zone

 

Over the weekend my OCD kicked in and Autism Boy and I took on the task of cleaning the play room. It resembled a scene out of the movie Twister. It was a project of epic proportions, but a necessary evil since we are going to have company coming to stay. Yes, Heavily Caffeinated Mommy has lost all her good sense and invited someone to come and stay at our home.

As most parents of kiddos with autism know structure and schedule is the key to happiness and I have thrown it out the window. I have a friend coming to stay for 7 days. 7 adventure packed days. Although Autism Boy is getting better with the going with the flow thing, I think this may push him over the edge. Which brings me to the point of this blog, schedules and structure. Although they are key to keeping us meltdown free if we never move outside our comfort zone we never grow and blossom into what could be.

A few years ago I took Autism Boy to a place he was terrified of, The Rain Forrest Cafe. That evil place has lights, sounds and lots of people. As we sat in the parking lot we talked about what was in the restaurant, what would happen and who would be there. We lasted 25 minutes that trip. And unlike most parents I made him go back. Now we can have an entire dinner there, and have at his request. Great things happen with time, multiple exposures to things and a willingness to experience things. I am so proud of Autism Boy.

 

The 80’s -Sharing my childhood with Autism Boy

 

The 80’s were a magical time in my life. It was my childhood. Children played outside. Streetlights called us home at night during the summer. We wore jelly shoes, charm bracelets, rode bikes up and down streets and were fearless.

Trying to explain to Autism Boy how life is different now is like trying to explain to someone in the 1800’s that we have cell phones. They would just look at you, like you are an insane person. It takes showing. I ran across a copy of my favorite movies, the Labyrinth. David Bowie in leather as the Goblin King. This movie was played in our house until the VCR cried out in pain from playing it so many times. It has been quoted like one would a great philosopher or theologian. It was the 80’s. And now it is a part of my son’s childhood.

On a cold night I gathered all the blankets, pulled out the mallowmars and shared my childhood with him. As a lover of Jim Henson my son was enthralled. The artistry was not lost on his young mind but his simply nature had him cracking up at the farting stones. If you haven’t shared your childhood with your kids, I highly recommend a trip down memory lane.