Autism.

Autism.

One of the words that no parent wants to hear uttered about their child.  But according to the Centers for Disease Control and Prevention (CDC) about one in 59 children has been identified with autism spectrum disorder (ASD). This number is up from the one in 150 reported in 2000.

Now to be fair, part of this exponential growth is due to changes in definitions as well as better research a better understanding of ASD. But when it is your child -- especially if it is your ONE and ONLY child -- you don't care whether it's one in 59 or one in 150. All you care about is the one.

We had the blessing of being able to adopt our child from the day she was born. We made it to the hospital about 15 minutes after she popped out, and she has been with us ever since. Before I get into her diagnosis of autism, let me tell you a little bit about her parents. Josh and I were both quiet children who did as we were told and gave our parents and teachers very little problem. I call us little lumps.  We grew up in homes where we did not have parents or siblings with special needs. And neither of us have had a lot of interaction with people who have special needs.

And then we became parents.

Now, at first what we saw in our child was exceptionality. She could identify all uppercase and lowercase letters before she was two. She spoke her first full sentence (not repeating an adult) before she was a year old. We have friends who had a two-month old baby. Anna was about 10 months old, looked at the sleeping baby and said, "Wake him up!" At 11 months old, she made up her first joke. She had shoes with Winnie to Pooh on them. I asked her, "Who's on your shoes?" She smiled and said "Melmo (Elmo)." I told her, "That's not Elmo -- that's Pooh!" And her reply was, "Ha! Ha!" So we knew we had a smart one on our hands.

By the time she was two, along with the intelligence, she was learning to express her feelings -- very clearly. Stomping her little foot, crossing her arms, and saying, "I angy (angry) at Daddy!" was not uncommon. But she also had times (many, many times) that she could not clearly express herself. Now I know all children "throw fits" from time to time, but hers were of epic proportions. And we had no way of knowing that this wasn't normal. We had never been parents before, and we knew that we were both extremely compliant children, so we didn't know that her outbursts were unusual. We just thought she was a strong-willed child (believe me -- she is!).  But both of our mothers knew the difference, and they both expressed that she was over-the-top. They thought we were just letting her get by with misbehaving and offered their opinions as such. But at home, we knew better. We knew that we were trying our best to hold this little person accountable to her actions (as much as is possible with a toddler) and trying to teach her appropriate behavior. And for every step we would go forward, we felt like we were taking giant leaps backward.

When it was time to send her to Pre-K, we decided that she needed the experience so that she could learn to interact with other children (and other adults) appropriately before real school started the next year. We struggled through Pre-K and were encouraged to start her on medication for ADHD before she started Kindergarten the next fall. So we did. And let me tell you, some ADHD medications can make outbursts FAR worse than any benefit you get from them. And some of them don't work at all. It's a crapshoot.

We made it through a rocky, but okay Kindergarten year. She already knew all they were learning, so she was bored in Kindergarten. So we and the teachers marked some of her behavior up to that. We had started taking her to a child psychiatrist who diagnosed her with social anxiety as well as the ADHD.  And we made the decision to move to a smaller school district where our child wouldn't be so overwhelmed. This turned out to be the worst parenting decision I hope we will ever make.

Now keep in mind, at this point our daughter is only entering 1st grade, and we have not had the diagnosis of autism. I could go on for pages and pages about all of the horrible things that we dealt with at this school, but let's just say that the Principal had no business working with elementary school children. We had her on a 504 plan, and we ended up getting a child advocate involved and meeting with the Superintendent to have the Principal removed from our child's daily routine. The Counselor at the school was completely worthless as well. She actually at one point told me my child was "a head case" and that if she were her child, she would have her committed to a program. The real problem was that the adults there knew which of her buttons to push to get a reaction and actively sought out opportunities to do so. Unfortunately, this is the story of far too many parents of children with special needs.

So we obviously made the choice to move her to another school district. And it was one of the BEST parenting decisions we ever made. While her psychiatrist still wasn't ready to accept the diagnosis of autism (because she is VERY high-functioning), the new school tested her and gave her the diagnosis of educational autism. And to be honest, we were not really ready to accept it. But after a couple of years, we had official medical testing done to have the official diagnosis made. By that time we understood that even though the label will give her a social stigma, it will also give her some legal rights that will help her to get the education she needs and deserves (she is SO smart!!) to be a productive member of our society. If society will accept her.

Nobody wants their child labeled as an outcast.

And that's what a diagnosis of autism feels like. You know that your child will never be accepted as a "normal" child by most people. And if your child is high-functioning, people will be even less understanding. In her younger years, we have not found her peers to be unaccepting of her as she is. It is the adults in her life. Teachers (especially the ones in her specials classes like Library and PE), dance instructors (got kicked out because "it's not fair to the other children that I have to spend extra time with her"), Sunday School leaders (don't even get me started…), and even at times her grandparents, aunts, and uncles.

And we know as she gets older, her peers will be less accepting. I mean, let's be honest -- they are learning how to treat people with autism and other special needs from the adults they have been watching for years. And we have found that far fewer adults try to help her succeed than try to hold her back or even crush her because of her disability.

So what is there to be thankful for when your child is diagnosed with autism or some equally terrifying disability? Well, the first thing I am thankful for is that our daughter has us for parents and not some of the people who have treated her so badly in her short little life. Not that we are perfect parents by any means -- but we have been very intentional in the choices we've made for our family, making sure that we try to do what is best for our child with special needs, and not just what is best for us. And I can promise you that some of the people we have had to deal with in regard to our child would not make the same sacrifices were they in our shoes. I am very thankful to have had my eyes opened to those around us who have special needs. My heart is softer now, I am more understanding, and I am a better person for it. I am also thankful for all of the wonderful friends I have made who either have children with special needs or work with children with special needs. There is a very special group of individuals out there who have a heart for those of us who are differently-gifted, and I am proud to say I know more of them now. They are champions, and they are my heroes.

People with autism are people. We as a society often treat them as though they are less important than the majority -- who don't have to struggle to function in a world that does not accept us. Those who are the least able to fit into the box are expected to try many times harder to do so. And it makes no sense. If you are the parent of a child with autism or other disability, remember that you are not alone -- even though it often feels like you are. There are many support and advocacy groups for parents just like you -- just a Google search away!

Here is an article I found helpful: https://www.friendshipcircle.org/blog/2013/07/15/15-indispensible-websites-for-parents-of-children-with-autism/. I have no affiliation with the writers of this article.