Friday, May 24, 2013

What I heard: A guest post by Calormom

As a mom to a special needs child, I hear a lot of things that I wish I hadn't. People tend to say things that are stupid. I don't mean that to be disrespectful, but it's true.  If someone asks me a question about autism, my son's behavior, his future, why he is or isn't doing something or any other aspect of him, I welcome it. As long as it's coming from an honest place and the intention is to actually learn something from my answer. The times it's unacceptable are when it comes from a place of malice or straight ignorance. I have heard some unbelievable things from strangers.  I've been asked by a mom at a park if autism is contagious. I've been told my son can't possibly have autism because he's too cute (WHAT?!?) I've been told it must be nice to be able to blame autism for his meltdown in a store. The worst one, in which I had been rendered speechless because I thought this couldn't possibly be happening and I must be in the Twilight Zone, took place at my local Target. My son was 4 at the time and sitting in the basket. We had a box of Pull Ups in the cart. A very well dressed lady and her son were behind us. He asked my son how old he was and my son answered. He then asked me why we still needed Pull Ups. I told him that my son was still learning to go potty. He looked at his mom and said "I'm 3 and I know how to go potty." His mom looked at him and said "I know sweetie, but not all kids are as smart as you." I said "excuse me?!?!" In her most condescending voice she proceeded to tell me that I just needed to put in a little more effort. I started shaking and said "not that it's any of your business, but my son has autism so it's just taking him a little longer." She rolled her eyes at me and said "that's a good excuse to cover up your laziness." My jaw dropped and she grabbed her kid and walked away telling him that my son was stupid and I was lazy and they should go get in another line. As I said before, if I hadn't been in complete shock that it was happening, I might have been explaining to my husband why I had been arrested. Witnessing ignorance being passed on to the next generation right in front of me. Awesome (sarcasm font). I'm willing to bet every autism mom has similar stories of ignorance. We learn to deal with it when out in public from complete strangers.

Recently, imagine my surprise when one of the most insulting things I've heard came from a friend of mine.  My husband and I took my son to a child psychiatrist to talk about some techniques we could use to handle some anxiety he's been having. The psychiatrist said that she thought my son's future was extremely bright and the fact that he has best friends and is very social at such a young age is amazing. I was telling my friend all about our visit.  My friend proceeded to tell me that he has been saying that all along, "I don't think he has autism. I think he just learns things slower." I was immediately taken aback by this statement and told him I found that very insulting. He said he didn't mean for it to be. Since we are very good friends, I'm sure he didn't, yet I still couldn't get him to understand why it was so upsetting to me. I ended the conversation because I didn't want to fight in front of my son. But I couldn't let it go. I have thought about that statement every day since.  I have to respond. I want to tell you what I heard when you said those words, "I don't think he has autism."

I heard that two psychologists, countless early intervention specialists, OT's, PT's, SLP's, teachers, two BCBA's and his medical doctor are all wrong.

I heard that my son losing sounds at 12 months and not having any words until 24 months didn't happen.

I heard that all the hard work he has put in starting with early intervention through pre-k to the point where he is now on target for mainstream kindergarten wasn't really done.

I heard that intensive ABA therapy over the past year was a waste.

I heard that the fact that I waited 4 years to hear 'I love you mommy' shouldn't have made my heart hurt.

I heard that having to make a schedule and/or verbally prepare my son for everything that will happen in a day isn't necessary.

I heard the anxiety and stress that I feel every time we are out in public while I worry that he will run off and get lost or have a meltdown isn't real.

I heard that the friendships I have lost, because I have a special needs child and have to decline invitations constantly,  are actually just fine.

I heard that my son randomly scripting TV shows or books at any time during the day is totally normal.

I heard that all the money we have spent on therapy, orthotics, therapeutic toys, books and conferences should have just been spent on a vacation.

I heard that all the nights that I went to bed completely exhausted and unsure of how I even made it through that day weren't real.

I heard that all the tears I have cried and the guilt that I feel because there are so many times my son can't effectively communicate what he wants, needs or how he is feeling, is a waste.

I heard that the joy I feel when my son accomplishes something that seems easy to others, but is hard for him, is unjustified.

I heard that my son doesn't actually have to work at least twice as hard as neurotypical kids his age just to make it through every day.

I don't know that this will change your mind. I know you may think I am overreacting. However, let me assure you that the hard days...they are really hard. If you could spend a few days in my world, you would understand. And the good me when I say they are SO good.  I want to share a blog that I found inspiring and think of every single day. Jess over at Diary Of A Mom once talked about a day that was going so well with her daughter, until autism made it's presence known.  She writes "The trip to the mall turned out to be exactly what they so often are - a roller coaster ride. It was wonderful until it wasn't. It was fun and carefree until it was overwhelming and impossible to manage. It was sweet and girly and joyful until it was hard and painful and sad." You can read the rest of the post here:  A Diary of a Mom blog I think this describes a day in our life perfectly. They are wonderful, until they are not. When my son was having a meltdown recently when I dropped him off at school another mom asked me "what happened ?" I shrugged my shoulders and said "autism." If I tried to describe the  seemingly insignificant event that happened which was enough to trigger the meltdown, it might seem odd.  Autism seemed  like a good answer. The morning was good, until it wasn't. As I said, I think of those words every single day. . I may not always understand why he is upset or what he is thinking, but I know that autism was there.

I hope this serves as a reminder that autism is a spectrum. No two kids or adults with autism are alike. They may have similar struggles but those may manifest themselves differently. There are some days that I don't have to think about autism at all because my son is acting 'normal' in society. These days are so very rare. I want people to know that just because his disability isn't necessarily obvious, doesn't mean it isn't there. What it means is all the early intervention, therapy, and education has given him tools to get through the day despite his weaknesses. Just know that every day is a struggle for him and he tries SO hard.  Therefore, if you don't understand, ask questions. Autism parents love to educate others. But whatever you do, don't tell an autism parent their child doesn't have autism.

Calormom's Bio:
Tracy is currently a stay at home mom to her 5 year old son. He is happy, sweet, funny and teaching the world about autism. Tracy volunteers in a special education classroom and enjoys being outdoors, reading and spending time with her family. She is determined to make the world a better place for her son and all those living with autism. You can follow her under her handle @calormom on Twitter. She dreams of having a blog of her own one day but for now just writes guests post when she has something to say.