We have an Aspie. There, I said it.

It was Autism Awareness Day yesterday. I read so many blogs, articles, and social media posts about raising awareness (which has filled my heart with joy). I have been pretty quiet for the most part about our journey into Aspergers and today, I want to share a little hope by writing a tiny nugget of our story. It has been challenging to write this post simply because looking back is emotional. I can clearly see how God gently guided us to a diagnosis and was holding us up during this tough time. Meet Carson...

Our Carson was a spit-fire of a little boy. Our firstborn, he helped us dig the trenches of parenthood in unexpected ways. I have learned how to be a better human from my son. He was a late talker, and didn't put sentences together fluidly until he was three and a half. He would mostly grunt and point as communication. He was strong willed (times a million and a half), he was very particular about toys, foods, and routines. His tantrums were Oscar-worthy and would test the patience of the most seasoned parent, which we were not. Every parent waits in anticipation for their child's first words, first steps, first poops, first everythings. Carson was hitting those firsts in his own timing. Our pediatrician, parents, friends and family repeatedly told us "He's fine! He will do such-n-such when he's ready." Being first time parents, we took their advice and settled into raising this feisty, uber silly, little boy.  Needless to say, things got ugly.  I hate to be exclusive but, if you have never lived with someone on the Spectrum, you won't get it and it will not flatter anyone to try and explain it. Moving on...

We spent the first 9 years of Carson's life trying desperately to figure out the whole discipline/parenting thing and failing miserably. I should mention at this point in our lives not one-single-person had ever mentioned or suggested to have him tested for anything. I received a billion parenting books and advice from good intentioned people, I researched the internet for parenting help and some guidance, nothing seemed to eliminate the stress of raising our son. There were many dark, dark days that I spent in tears not knowing or understanding how I could mess up a human being so bad. It was a very lonely time; no one seemed to see what Eric and I were watching develop in our precious son.

We didn't understand how deep we were until his siblings began school. Their approach to life and learning was so different in comparison to Big Brother. In fourth grade we were blessed with an incredible teacher for Carson. Mr. Jacoby was the first person to ever suggest that Carson may need to be tested. He worked with Carson and us throughout the year and really was an advocate for him in the school system. This same year, Eric and I started watching a show called, "Parenthood". There is an actor on the show, Max, who has Aspergers. Every episode we watched we would look at each other and nervously giggle (or cry) because the character was so much like our son. We connected with the struggles of the family but, our son didn't have Aspergers.

Throughout his fourth grade year, we became more and more educated about who our son was and how he functioned. A few others began to suggest he might be struggling with something. He started acting out more in public and school. We finally took him in to be tested. We really expected we would walk out with an ADD diagnosis and that was that. Long story short and hours of testing later, he was diagnosed with ADHD, OCD, and ODD. We would discover a year and a half later that he was misdiagnosed.

After the initial "triple-fun" diagnosis, we were still at a loss on how to raise and love our son the way he needed. I studied like a crazy lady all about ADHD/OCD/ODD. Still failing hard to help my son. After almost two years and a little more education in my brain, we decided to have him re-tested by an Autism Specialist. That is where Dr. Jim and Dr. Carol came into our lives to save the day.

D-Day (aka Diagnosis Day) felt a little surreal. I remember sitting in Dr. Carol's office as she sweetly explained a plan to help our son. I wanted to bawl right there on her couch and hug her forever. Someone had finally said it out loud, our son had Aspergers. I can't say that we really believed it immediately or accepted that our son now had "a label". I do know that a mammoth sized weight was lifted because we could move forward to help our son and someone actually believed us. We weren't crazy.

Circa 2009

We began therapy immediately. Things got drastically worse before they began to get better. We started Carson on Neurofeedback therapy. What an insanely fascinating education to learn about the brain functions and watching our son begin to balance himself.

Our Boy is now in his teenage years.  That brings challenges of its own but, layer those hormones with chemical imbalances and you've got a super situation on your hands, like code red. We have seen tremendous growth in his character and academics using Neurofeedback. We still have a long road to travel but, the future for my son is so exciting and promising.

There is hope out there for parents with children on the spectrum. Its expensive and a battle in the school system to get kids the help they need. I am so thankful for individuals out there pursuing treatments, fundraising, and advocating for families. My son's experience with treatment is proof that there is hope.

I can't put into words how much I adore and love my son. He is an incredible kid. He has taught me so much about love, respect, individuality, strength, perseverance, and humility. How on earth did I get so lucky to be his Mom?

I hope reading a little bit of our story will encourage a parent out there with a child who needs an extra dose of patience and love. Hold on to your Baby and be their strength. Imagine how frustrating it is for them to constantly be misunderstood. When that little sweetheart gets on your very last, God-loving, nerve, remind yourself that their brain is misfiring, it will allow you to have more grace. There is help available and I pray that the world will begin to see how desperately there needs to be a mental healthcare intervention.

If you would like more information about Aspergers or Autism, please visit: http://www.autismspeaks.org

Aspergers and the Holidays

He comes alive for the camera!
I came across this letter for parents of children with Aspergers Syndrome (high-functioning autism) today on another blog.  I wanted to share it on my blog because I loved how it is written from an Aspie's perspective with a wonderful insight to what is happening inside their minds.

I forget how hard it is for my son to function in everyday scenarios.  I take for granted that even trying a new food can send him over the edge.  It can be confusing and frustrating to raise a child with Aspergers.  I am desperate to learn and understand what goes on in my son's brain. He has to overcome a 100 challenges before breakfast, I forget that and I am humbled by his determination.

The letter was written as a tool for the holiday season but, I think it is a beautifully written summary of Aspergers.


Dear _____,
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.

As you probably know, I am challenged by a hidden disorder called Aspergers, or what some people refer to as High-Functioning Autism. Aspergers is a neuro-developmental disorder which sometimes makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which may make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try to understand people, and at the same time make myself understood. Children with Aspergers have different abilities. For example, some may not speak much, and some write beautiful poetry. Others are whizzes in math (Albert Einstein had a form of autism), or may have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being around a lot of other people sometimes feels like standing next to a moving freight train – and trying to decide how and when to jump aboard. I may feel frightened and confused some of the time. This is why I like to have things the same as much as possible. Once I learn how things happen, I can stay pretty calm. But if something changes, then I may have to relearn the situation all over again!

When you talk to me, I may not be able to comprehend everything you are saying to me if there is a lot of noise and distraction around. I usually have to concentrate to hear and understand one thing at a time. You might think I am ignoring you, but I am not. Rather, I am hearing everything, but not knowing what is most important to respond to.

Holidays can be hard for me because there are so many different people, places, and things going on that are out of my ordinary environment. This may be fun and adventurous for most kids, but for me, it can be hard work and extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I can’t sit at the meal table, please don’t think that I am misbehaving or that my mom and dad have no control over me. Sitting in one place for very long is often very hard for me. Sometimes I feel overwhelmed by all the smells, sounds, and people. When this happens, I just have to get up and move about. But please don’t stop eating on my account. Go on without me, and my mom or dad will handle the situation the best way they know how.

Eating in general can be hard for me. If you understand that Aspergers is a sensory processing disorder, it’s no wonder eating is a problem. Think of all the senses involved with eating (e.g., sight, smell, taste, touch) and all the complicated mechanics that are involved (e.g., chewing and swallowing).  This is something that some kids with Aspergers have trouble with. I am not being picky. I just can’t eat certain foods because my sensory system is overly-sensitive. (Hope you understand.)

Also, please don’t be disappointed if my mother or father doesn’t dress me in fancy clothes. It’s because they know how much stiff and itchy clothes can drive me nuts! I have to feel comfortable in my clothes, or I will just be miserable. When I go to someone else’s house, I may appear bossy and irritable. In a way, I am being controlling, because that is how I try to fit into the world around me. I like things to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things. Just please be patient with me and understanding of how I have to cope.

My parents have no control over how my Aspergers makes me feel inside. Kids with this disorder often have little things that they do to help themselves feel more comfortable. The professionals call it “self regulation,” or “stimming.” I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to the environment. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The professionals call this “perseverating,” which is similar to self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Holidays are filled with sights, sounds, and smells. The average home is turned into a busy, frantic, festive place. This may be fun for most kids, but it can be hard work for me to conform. If I fall apart or act-out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. In any event, I will try very hard to be on my best behavior when we get together during the holidays.

Thanks for listening. I’m looking forward to seeing you.