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Every Day is Autism Awareness Day.

April is Autism Awareness Month. A whole month dedicated to the education of Autism.  At our house, we don’t need a month to be aware of Autism. It exists everyday.

Like many parents of kids on the spectrum, when my son was diagnosed, I became an instant expert on Autism. I read everything I could get my hands on and as the internet filled with information, I read that too.  What I learned by becoming an expert is that I knew exactly zero. I had a good base for the journey we were going to embark on but as I have heard and have said myself many times, when you see one child with Autism, you’ve seen one child with Autism.

I learned that my son wasn’t really a picky eater, but that certain textures felt weird. I learned that my son wasn’t throwing a temper tantrum when he didn’t get his way, he was trying to be heard.  I learned that light touch was painful for my son and that deep pressure felt amazing. The list goes on and on and after 17 years, I’m still not an expert.

There is so much to know and do that no one person can really be an expert.  We adjusted our expectations and we learn how to improvise, and we say that “Tomorrow is an opportunity to start fresh.”

As a parent of an aspie, I want to make my son’s life easier. I want to keep the people who can’t see who he really is away from him. I want the bullies and the close minded people to go away.  I know I can’t do that and I know that he must experience what life throws at him so that he can move forward. I know this, but it is difficult.

When my son was very young, school was a struggle, making friends was impossible and it felt like time slowed to a stop. His peers didn’t want to include him in their play time at recesses and he didn’t really understand how to ask to be included. Birthday party invitations were not plentiful and those I sent out on my son’s behalf were not well attended. Play dates happened at our house under close supervision. My son’s behaviors were too unpredictable for him to maintain a peer friendship.

My son has become a beautiful human. He still struggles with school and has to have a one to one aide to help with transitions, but I see that he relies less and less on other people. He has a lunch group that he “hangs” with and he has friends that want to spend time with him. He is extremely creative and has a passion for sculpting in aluminum foil. I see a future for him and lately, that makes me hopeful. He will be a Senior in high school next year. For him, it can’t come too soon. As for me, I could use another year or two.

What I am, is extremely grateful. I am grateful that I get to be Tyler’s mom. I am grateful that everyday, I get to learn something new or see the world just a little differently. I am grateful for the struggles, because they make us both stronger.

What I really want to say is that Autism isn’t just a month to recognize. It is everyday. It isn’t about not being able to function in the world outside, but learning how to be yourself in a world that doesn’t understand the way you think.

For those of you who don’t know what to do, I would like to offer this advise; be kind to the mom who is struggling with a toddler who is “out of control for “no reason”. Show some compassion to the child who is covering their ears when they are around load noises. If you know someone who is the parent of a child on the spectrum, offer them some respite. They love their children but they may need a break. Include the “weird” kid in your child’s class and show them how to be a friend.  Autism is everyday.




Human Nature.

My son isn’t having his best year at school, however with the stability of our new living arrangement and steady consistency, he is learning how to self manage. With only two weeks left of school, we are finding that there are a lot of projects that have fallen through the cracks in his Biology class. Motivating him to complete these projects has been a great big challenge but we are chipping away at them.

Getting Tyler enthusiastic about school is my number one priority. I use any opportunity as a learning experience. When Tyler expressed an interest in the dying pine trees at our family cabin and finding out why they were dying, I was excited. I proposed a potential extra credit assignment for his Biology class. Tyler agreed and was excited about solving the mystery of the dying trees, so we started outlining a project.

We started taking pictures of the tree stumps in our yard and of the dead and fallen trees around our neighborhood.  We happen to stopped at a garage sale while taking pictures.  An older woman running the sale asked me about my camera and what we were doing.  I was very happy to talk to her about this wonderful project that had sparked the thirst for knowledge in my son! As I was explaining our project to her, my son stood by me listening to my every word, waiting for me to finish so he could talk about it too. Then a man also at the garage sale said, “Who’s project is it mom?”  My son quickly answered, “My mom and I work on projects together. It’s what we do.”  The man said slightly under his breath, directed at my son, “Maybe you should do more of it.”  At this point, my son and I walked away, got in the car and left.  This is what I really wanted to say:

“So you think you know me and my son. You think that I am a helicopter mom who does my son’s projects for him. You think my son is spoiled and doesn’t know what it is to work hard.  We’ll Mister, you couldn’t be more wrong. My son is on the autistic spectrum.  He, like many children on the spectrum, does not like the structure of school. Many kids are homeschooled because they cannot be around the stimulation of public schools, or their issues are so severe that they cannot leave their home.  My son is fortunate because he is main streamed at a public school. He hates school, but he goes with the help of a one to one aide. When my son gets excited about a project and participates in the learning process, I get so excited that I often gush about what we are doing.  That is what you overheard. You assumed because you didn’t know that my son is an Aspie, and proud of it by the way, that I was an overbearing, over protective parent. You sir, should not assume. It only makes and ass out of you and me.”

But I didn’t.

I felt that explaining my son’s personal medical history to a stranger who unfairly judged him again, would be a moot point.  For many years, I have explained and tried to educate people about Autism. Sometimes people get it and sometimes they don’t. There are family members and friends that still don’t get it. I usually don’t give up. I usually educate and talk about Autism.  However my gut told me that this man wouldn’t get it and probably wouldn’t care. When I realized that I was judging him just as much as he was judging me and my son, I just felt sorry for him and glad that I didn’t say what was in my heart.

People judge people. Their actions, their appearance, their accent. We look at someone and we decide if they are homeless, well off, healthy or sick.  We listen to someone speak and we decide what type of education or lack thereof, they have had. We judge and we don’t even think about it. Maybe we should.

Now we are back home diligently working on the almost forgotten Biology projects and going about our everyday life. Our family weekend that lead to a spontaneous biology project about the local ecosystem, actually taught me about human nature.

Mine to be exact. That is a lesson that I am proud to have learned.





6 weeks


The count down to summer has begun. Six weeks of school left. Seeing the end to my son’s Sophomore year of high school is bittersweet.

During this year, we tried moving my son to a private school, one that would be better equipped to work with him, but they wouldn’t take him and being a private school, they did’t have to.  They told us that he wasn’t ready to meet the demands of the intimate, safe environment they have created for their students. They said he was lacking the skills to move forward quickly and be fluid. They said that if he had been in their school during his middle school years, he would have been “trained” to try new things by experiencing continual successes, thus preparing him for the demands of this high school. This was the first time in a very long time that my son was excited about going to school and about learning new things.  This school really did try to accommodate him, and on some level, we thought that it might not work based on his anger issues, so I can’t really say I was surprised, but I was surprised.  The administrator seemed genuinely sorry that he didn’t have staff that could take the time to work with my son to get him to a place where this school would benefit him.  They were very kind and very helpful with advise to us about how to get Tyler new services that would, in their opinion, help him move forward and maybe prepare him to being open to learning.

Now that was a blow to the ego for all of us. We, and by that I mean mostly me, as Tyler’s parents thought we were advocating for him and getting him the services and skills he would need so that he could manage and be successful. Apparently, we were wrong. Was all of the time and effort we have spent in countless IEP meetings, advocating for services for not?

It did occur to us that the school might not take our son, but I fully believe it never occurred to Tyler. He was devastated.  The school administrator seemed to really like and connect with him, so he was the one that “broke” the news to him.  I let my co-parent handle that meeting so all I have is a second hand source about what happened, but my understanding is that my son took the news in stride and if he would work on being more pliable and willing to try instead of instantly rejecting all things academic, he might be able to try again to be a student at this school.  I suppose on the surface his reaction seemed reasonable, however, he had a plan brewing in his Aspie brain.  He wanted out of his current school and honestly he was pissed off that he didn’t get to go to the new school.  Teachable moment? Yes if handled by the co-parent correctly. It wasn’t.

My son dove into a deep depression and self destruct mode.  Instead of working toward the goal of implementing small changes so that he could eventually attend the new school, he got into a fight, biting another student in the hopes of getting expelled.  Instead, he received a two day suspension. When that didn’t work, he used a ceramic tool as a weapon against another student. When called to the principal’s office he offered him a letter that he had written, asking him to please expel him so that the monster that lives in him could be put to death.  What? How did we get to this place? How did a rejection from a private school morph into a request to die?

Breathe. I have to remember to breath.

I really try to empower my son to advocate for himself, but his plan to get expelled was a little over the top.

Eventually, my son did advocate for himself to get himself out of a toxic situation with his father. This was an excellent move on his part.  He realized that he needed consistency and understanding. He realized that if he was going to make it through the rest of the school year he needed to be in a safe and secure space.  So far, he has been able to follow through with his school work, handle an increase in his home chores and choose when and how he sees his father.  He is moving forward and growing.  It isn’t perfect, but is it progress.

Now that the school year is ending, I can’t help but wonder what his Junior year will be like. I am hopeful that he will continue to grow.

Are we on the same page?

While sitting in my son’s latest Individual Learning Plan meeting a few weeks ago, I couldn’t help but think to myself, “Are we on the same page?”  As we laboriously poured over goals and objectives that may son either met or didn’t meet or plan to ever meet, I got this sense that the I.E.P. team was not envisioning the same future for my son as I was envisioning.

The team decided to end some of Tyler’s services. This is always a tough call because as parents we advocate and fight for every service we can for our child. When the team decided to eliminate one or more of my son’s services without prior discussion with myself or my co-parent, I can’t help but get suspicious that something bigger is on their minds.  My “red flag” sensor start working overtime.  We spoke at length about my son’s behaviors and how disruptive he has been in class. This of course is not new and the incidents of escalation have actually decreases this year, however we continued the discussion about how he takes several breaks to collect himself and even though it is a great coping technique, it causes him to miss much of the lecture and the continuity of the material that is being taught. Even with a one to one aide to help him with transitions, the over stimulation of the classroom often escalates him to a point of needing to leave the classroom.

One solution the I.E.P. team came up with was to have my son take his classes pass or fail. No grades, no pressure to succeed. Brilliant! But wait there is more. These classes wouldn’t count for college. For General Education High School classes to be considered prerequisites for college courses, students must maintain a grade of “C” or better in the class. Taking classes “pass or fail” would allow the more opportunity to modify my son’s assignments allowing him to have a “stress free” learning experience.  My son would still get a diploma and graduate, but if he wanted to attend college, he would need to take prerequisites like Beginning English and Beginning Math Skills before he could take any General Education classes. Basically, I would be paying for my son to take High School classes at college so that he could be  at the same place academically that he should have been when he graduated high school in the first place!  My son’s case manager then suggested that we consider putting our son on Social Security Disability as soon as he turns 18 so that he can have some income and be eligible for adult services like life skills classes and job coaching after he graduates from High School.

These are great services and there are many children and young adults that would benefit from this path, however, this is not the path that I see for my son. More importantly, this is not the path my son sees for himself. He is extremely immature and very intelligent. Thinking about a future that doesn’t include him living at home is scary as hell. This is not unusual for children to experience and it is especially unnerving for Aspies. My son worries at length about being independent and on his own.  He does have a plan for his future. He wants to design Transformer Toys for Hasbro. He has his plan chunked up into small pieces so that “The Big Picture” isn’t too overwhelming for him.  He doesn’t want to think about going to college. He can’t imagine a world where he doesn’t live in our home. It’s too big to think about and I support that. That is what works for him now.

It felt as though the I.E.P. team was no longer willing to work with my son and it felt like they wanted to move him along and out of high school with the least amount of resistance. Honestly, I must say that I wasn’t surprised by the I.E.P. team’s suggestion as much as I was disappointed that they don’t have the same faith in my son as I have. As parents we have to advocate to find the best of the best for our children so that they can reach their full potential. What our children don’t need is more people that don’t believe in them. They also don’t need to be in a space for 7 hours a day that does not embrace who they are as individuals.

So now we are going to try private school.  We received a recommendation from a close friend and educator regarding a private school in our area that embraces the “Unique Learner”. We are all hopeful that this place of learning will embrace Tyler for who he is and help him make it through High School with an education that he can take to the next level if he so desires.

I have said many times that I feel that my son will make an awesome adult. When he hits 24 or 25, I feel that his maturity will finally catch up with his age and his world will make more sense. I have read many articles, I have spoken to many adults with Asperger’s and High Functioning Autism and they seem to be pretty consistent in the thought that it gets easier to adapt to a world that doesn’t make sense to you as you get older.  I sincerely do not want to “wish away” my son’s adolescence, however I will be grateful when we reach the time and space where we are all on the same page.

When its time, you’ll know.

Tyler is at the end of his freshman year of High School and I can’t help but remember a time when the thought of him attending a public school with his peers was unthinkable. From the time he started an early intervention program, being around peers has been difficult.  The decision to wait until he was 6 to start school, the decision to have him main streamed with an aide instead of going to resource classes, the decision to continue with speech therapy, the list goes on and on. There are always so many decisions that need to be made all the time that sometimes it feels so overwhelming.

This year has been a really tough transition for my son.  Leaving behind the comfort of the people who knew him and landing in a place were everything didn’t fit.  In High School, the expectations to “act” older and fit in with peers was top priority. For me, I felt is was time for Tyler to stop bringing Transformers to school and “grow up” a little.  I wanted him to fit in more with his peers. I forgot, temporarily, that it wasn’t about me. I forgot that he might need a little extra help with so many changes that the little things that help comfort him would be ok to continue.

Being Tyler’s advocate, his voice, his champion. That is my job. Sometimes I get ahead of where Tyler is emotionally because of his age. I know that his beautiful brain is academically on point. Emotionally and behaviorally I also know that he is years behind his peers. So when I convinced him to leave behind those things that comfort him when he entered High School, I thought I was helping him to adjust to a new world. I didn’t realize how important those coping tools would become.

The first semester was brutal! Tyler was lost in a sea of  unfamiliar faces, sites and sounds. He tried his best to cope, but he had a few setbacks. Not to mention that most public schools are not really equipped to deal with kids on the spectrum.  Our school district is better than most, but suspending my child rather than trying to understand the root of the behavior is the fall back position. Was there a reason why my son lashed out at the student who had been harassing him for weeks? Absolutely!  Was there any intervention from either his aide or other staff to help my son and his harasser figure out their grievances before it got out of hand? Nope!

So I had to trust my gut and make some decisions for Tyler. I had to decide (against my co-parent’s wishes) to have his current aide re-assigned. It was very clear that the relationship was never going to be right. My son felt like he was being babysat and that he definitely wasn’t being heard or respected. There is nothing like the feeling of going up against the Director of Special Education first thing in the morning!  A new aide was assigned and the changes in my son were amazing!

Next on the list was re-instating some of the security items that made Tyler feel safe. I had to push the administration to allow Tyler to bring a transformer to school.  I talked him out of bringing them to high school, initially,  but in hindsight I was able to see that having that piece of plastic in his backpack gave him the confidence he needed to advocate for himself. There were other items that we brought back for him like clay and bubble wrap. Using these items to create and relieve stress helped him to cope and maintain during the school day.

I was trying to push him too hard, too fast. If or when Tyler decides that he doesn’t need those items to feel confident, I now know that he will let me know. He has a voice, he has an opinion and as he matures, he will let go of what makes sense to him.

It’s summer vacation and this mom is one happy camper. Freshman year is over, lessons have been learned by me and my kiddo. He even received an award for Freshman Honor Roll! Relax Tyler the Creator, you’ve earned a rest.


What I Need You To Know

Tyler is completing his freshman year of high school and I believe if his first aide had been allowed to communicate directly with me a lot of the issues my son faced this past year could have been avoided. Now that my son has a new aide, here are the things I need him to know.

My son has a big heart and he believes in justice. If someone is breaking the rules or bothering a friend he believes it his job to call attention to the situation. His heart is always in the right place. He needs to be heard, acknowledged and then reminded that there are adults that will deal with the situation. 

My son has audio sensativities. Certain tones affected him painfully. When he tells you that the student tapping his pencil three rows over is bothering him, it really is. Please don’t push his request to ask them to stop aside. Remind the student or ask the teacher to intervene on Tyler’s behalf.

My son didn’t speak until he was three and like other kids on the high end of the spectrum he resorts to movie scripts when he is in a stressful situation.  When he says “I’m going to blow you up and eat your brains!” Ask what movie that is from or better yet, acknowlege his stress and use a little humor to re-direct him to the topic at hand. 

 My son doesn’t understand sarcasm. Kids are kids and they tease and bully each other. Telling him to let it go only escalates his feeling of being picked on. Please acknowledge his feelings, talk to the student who may not know that my son doesn’t understand teasing and ask them to stop. My son needs to trust that you have his back and will advocate for him when neccassary. 

My son needs to be redirected as his beautiful brain likes to solve the world’s problems at the most inappropriate  times. School is not important to him so this is a very difficult task. Reminding him that he can take a break anytime usually helps.

My son loves Transformers and Bionicles. Most resistance can be re-directed with the promise of some Transfo
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I’m always telling my son that his actions affect those around him. When he is having a good day, no stress or pressure his laughter is my music and his positive energy is almost tangible.  When life gets too hard and his day spirals to the I can’t and I won’t place, and he shuts down, his silence is deafening. Having to be “on” and remembering that his tone of voice or his body language or choice of words impact the people around him and can make a situation worse is exhausting for him.  This is the life of my Aspie boy.

As his mom, my goal is for my son to have a good day and positive experience every day. This is a very tall order as he absolutely has no use for school and going there day  after day is a type of torture for him. He does his best to fit in with his peers, however he does come with his own adult and that alone makes him stick out. His logical mind cannot grasp busy work and just when he finds a subject fascinating, the teacher is ready to move on to the next topic or the bell rings.  His outbursts and frustrations often times make him a target for those students who are small minded and find pleasure in his pain. Transitions are difficult for him and he has to constantly hold back his initial impulse to blurt out. As I said he comes with his own adult, an aide, who is with him during the day to help with transitions, but often times, his aide doesn’t know how to re-direct him to a more positive place.  I advocate for him as much as I can, and I am continually teaching him to advocate for himself. When you are surrounded by people who really don’t know what it is like to be on the Autistic Spectrum, and you find yourself educating them, over and over again. It gets to be a real drag!

I constantly worry about how he manages at school. I have come to terms with the fact that his high school experience will be his and not mine. I wanted him to have a lot of friends to hang out with and I wanted him to join a club and I wanted him to have a best friend that he could talk about girls with, but that is what I want. My son simply doesn’t care. None of his peers want to hear about Transformers or when the new ones will be released. They could careless about how desperately my son wants to work for Hasbro Corporation so that he can design Transformers. They are thinking about getting their driver’s license and who likes whom. Tyler is not on the same social plane as his peers so for him, school is a waste of time. He has so much to give, but there is no one there for him to give to. Still he goes to school everyday complaining all the way.

I was talking to my neighbor about all of this the other day. Her son tutors my son in math. Her son is a Senior this year and will soon be off to college. Tyler will miss him but I never thought that her son would miss Tyler. Her son has done an amazing job tutoring Tyler. I often listen to their tutoring sessions and I am constantly amazed by the level of patience this young man displays. When the math gets too difficult and Tyler tries to shut down, her son encourages him, telling him that he is smarter that any old math problem.

My neighbor shared with me that her son had written an essay to accompany his college application and that the essay was about the connection he felt with my son. How he could see that my son had so much to offer but that our school system wasn’t equipped to understand someone like my son. Someone who truly thinks outside of the box. Someone with a logical, beautiful mind. I was completely caught off guard. It was an amazing feeling to know that others can see the beautiful human being that I see everyday. What an amazing gift she gave me!

Her son was accepted to that college, but will be attending another one in the fall. She didn’t tell me about the essay when he wrote it last fall but she said that she felt I needed to know now how my son had affected her son and that by knowing him, her son felt a connection to him and that he will miss him when is off at college.

I haven’t yet told Tyler about how he touched someone’s life positively and deeply. The time will come when he needs to hear it just like I needed to hear it.  When life gets too big and he feels like no one gets him. Then I will share this story with him.  Until then I needed to share it with you. It’s just a reminder that everything we do, every day affects those around us. Its the ripple.