The Maddening Messes of Autism

There really isn't anything funny about autism. The two a.m. wake up calls, the continual advocacy efforts, the behaviors, the stress of finding quality care so you might enjoy a night out with your spouse. And that is the short list. So, I like to find the hidden humor in it all, whenever I possibly can.

 There is one thing that always does strike me as funny. Especially because I have 100 percent, self-diagnosed, Obsessive Compulsive Disorder. I like things neat. I spend a ridiculous amount of time attempting to keep things neat. I have three young children. Why would I torture myself so you ask?  Because I am straight up OCD!

So here is the funny part. Children with autism are NOT NEAT. I could tell you stories that would make you retch, but I won't. I will keep it simple and light. But you autism momma's out there know what I am talking about, when I say stories that would make you forever grateful that you yourself had only a "typically" messy child.

Let us start with a story I heard from my sister, who used to work with families that have children with autism. There was this boy I will call "C". He loved to drink Kool-aid, and lots of it. So one day he figures he will try his hand at fixing himself some. So C finds the sugar, a couple 5 pound bags I believe. He opens and pours the bags onto the kitchen floor. Then he manages to find the packs of Kool-aid, empties them on the floor too, all in one massive heap. Then C gets two sticks of butter opens them and places them atop the mountain, I guess just for good measure. This happened almost ten years ago and my sister still recounts this, usually after I tell her about one of Ethan's recent masterpieces.

My stories always revolve around food. Ethan likes to take one bite of food, for every two to three
bites he mashes and then drops to the floor or chair. No lie, each and every time he attempts to get up from the dinner table, either his dad or I rush him like a linebacker, in an attempt to brush whatever mess he has on him off, so he does not carry it about the house. My five year old typical son, having lived this way most of his life, has been known to yell, "No Ethan.....wait for Mom!"

I had a contractor at the house a few months ago fixing the door directly behind Ethan's dining room chair. This man happened to be here after I fed Ethan lunch. He looked at me then back at the mess and asked, "Is that from one child?" Yes I said, ONE child after ONE meal. He just shook his head and muttered, "holy __"

Ethan also likes gum, alot. So I allow him to chew gum, which I find stuck in places I did not know he even cared to go. Like behind the couch, stuck on every shoe we have, on most toys, inside my cupboards, etc. I have become masterful in getting gum out of rugs and off shoes. I have experimented with many types of gum, hoping that I will discover a brand that is "less sticky."  Kinda
stupid I know..... ALL gum is STICKY!

But honestly the ultimate joke is on me. These mega mess catastrophies have really challenged me to relax my standards, and overcome my OCD to the best of my ability. Can't say I am there yet, but I am working on it. Believe me, each day gives me a new opportunity.

Carly Media Clips Nov 27 SM.mov

Mommy Go Faster!!

Just like every other North American family we have been capitalizing on the few warm, pre-spring like days, we have had the past few weeks. After being cooped-up inside for an entire winter these days are so delicious. So, it was the first time we have seen Mia outside in quite awhile. She was not impressed. She stood inside peering out at us through the sliding glass door. Every minute or so she'd stick a foot out, let it touch the deck, then jump back in while screaming. It was as if she was saying "I know something is going on out here, I don't want to miss it, but I just can't do it people!"

She did this stick a foot out and run back in thing for about 5 minutes. Nick and I looked at her every so often, and cheered her on saying, "Come on out it is going to be alright".  Finally she made it completely out onto the deck. She looked down at us smiling and laughing. Guess she finally realized she would not vaporize or melt in the mid-day sun. Then she really hit her stride. She came down the deck steps and into the backyard!

When she made it into the backyard, I really started watching her to see what she'd do.  Last year at this time, we were just starting to realize that Mia might have autism. She would pace back and forth over the stones in the landscaping or sit and play in the dirt. She was terrified of the swing, and could only tolerate the slide. I remember watching her from inside the house, picking apart each aspect of her behavior. I tried to rationalize the autism away by telling myself she is a girl, not a rough and tumble boy like I am used to. There was no escape from her impending autism diagnosis. I tried to reject it, but very slowly had to accept it instead.

So here we are almost a year later. Mia is making progress all the time. She is becoming far less anxious and much more exploratory. She is beginning to use her language more, and is putting two and for the first time yesterday THREE words together! It happened while outside of all places. I was pulling her in her wagon when I heard it. At first it was only a whisper, and I had to stop and listen to make sure I really heard it. Then she said it again a bit louder, "Go faster Mommy".  My mouth hung open for quite awhile and I finally realized that I had come to a complete stop while I stared at her. She glanced at me and said it again, "Go faster Mommy". So man let me tell you I went fast. I can already see she is going to love those Hersheypark rides.I went in circles through our backyard speeding up and slowing down. I had such fun with her. That's the thing about autism. It teaches you to appreciate every little thing. Every word, every skill mastered, every accomplishment.

Cancer in the rearview mirror?

Did not get much sleep last night. It's no wonder really. Today is Ethan's "diagnosaversary" and his 3 month MRI. So, in essence, today can turn out to be a day of continued celebration, and reflection on how far we have come, or it could turn out much differently.

As I write this, Ethan is under sedation having his 3 hour scan performed by some of our much beloved physicians at Hershey Medical Center. It just so happens, that on this very day 2 years ago, his brain tumor was initially discovered. Two years ago today. I remember everything about that day. I remember hearing the tremendous thud, as he hit the floor when the intracranial pressure became too much for his brain to tolerate. I remember thinking it was just an accident, he must have been climbing and fell accidentally.

Turns out it was an accident that saved my sons life. That fall led to his CAT scan that discovered the cancer. I joked to the hospital chaplain that his guardian angel, who I firmly believe he has always had, was "off duty" that day. After the brain tumor was discovered the chaplain reappeared in the waiting room. He very seriously approached me, looked me directly in the eyes and stated, "Lisa, his guardian angel was not off duty, that angel knew this accident was necessary". I still get goose bumps when I think about that moment.

I have never been very religious. I have never attended church on a regular basis. I am embarrassed to admit my children are not even baptized. But, after this whole experience, for the first time in my life, I truly felt god's presence. There is no other explanation for how beautifully Ethan has handled all his treatments, surgeries, and setbacks. Ethan is our miracle. Hope and faith are essential to families dealing with childhood caner. We hold them as close to our heart, as we do our very children.

So, the scan is today and tomorrow we meet with his oncologist to go over the results. Like all families dealing with cancer, that scanxiety can feel brutal. Good news brings relief and a return to normalcy. Unexpected news sends you "back in the ring" for yet another round. So as I pray for my own son, I also pray for those of you reading this, that are fighting a battle of your own.

Lisa

Super Sibs

What must it be like to have a sibling with autism? We, as parents, connect with each other. We discuss all  aspects of raising a child with autism. But with whom do all the siblings speak? Where can they turn? Do they even posess the ability at their young ages to know that their feelings are justified, and often quite similar to their parents?

My son's private school for children with autism is organizing an event for " Siblings and the Spectrum".  I am taking Nicholas next week. I actually am a bit nervous for him. I would like to sit in for at least part of the time, hoping to hear a snipet of how these sibs really feel. I am eager for Nicholas to have this opportunity, but also nervous about what he might say and how I can help him through it.  I want to have the perfect words ready to aid him. I want him to know how hard I know this is for him. I bear witness to how hard he has to work to have even the slightest bit of a connection to his siblings, whom both have autism.

When he does connect he and I really celebrate our victory together! Last night I was able to get Mia to say his name while she pointed to him. What an incredible grin he has when she is able to say his name, high five him, or tolerate a hug. The other day Ethan threw a ball back to him, and Nick screamed, "MOM did you SEE that?"

I think the most important thing is to help our typical children develop a bond with their disabled sibs. Also, let them know that they have a "say" in how things are handled when difficulties arise in the household dealing with autism. Autism is a huge part of our world as a parent, and we should never underestimate just how much it impacts their life as well.

I had Nick's parent teacher conference a few weeks ago. I was told that he works very hard to do his best and that he is a very compassionate friend. I remember last year when he was in preschool, his teacher told me he is always the first child to ask about a student when they are absent. She said he was always the first one on the "scene" when someone fell outside or had any minor injury in the classroom. So I have this pretty empathetic 5 year old. Cannot help but wonder if having siblings with autism has had anything to do with inspiring such a wonderful character trait. No, I do not wonder, I know that autism has played a big part.

Transitioning

It seems to me that autism can be like the wind. Some days, barely noticeable, just a steady manageable breeze.  Other days, it is howling, so fierce you fear your home, and all that inhabit it, will be picked up and carried away.

Well it has been windy around here lately. Mostly because I have been dealing with Mia's transition from Early Intervention to a preschool program.  Boy how I love Early Intervention.  Those therapists come right to your home providing guidance and education to you the parent, while giving your child therapy in the comfort of their home.  I remember back when Early Intervention ended for Ethan.  I felt a bit lost then too.  But, we "found" The Vista School and we were not alone for long.

Mia has had pretty intense ABA/VB programming since this past June.  I am really proud of the team of individuals we have had working with her.  I have had quite a few parents and professionals remark on our accomplishments.  I am very thankful for Mary Barbera, our BCBA.  She has pushed me when I needed pushed and guided me when I was struggling.  I have learned so much from her and continue to, and I thought I already knew alot! 

I am currently working hard to continue to make the best decisions for Mia.  It is pretty much a full-time job.  I am really worried about her and how she will do without me right beside her, as I have been up to now.  How can I protect her? What if it is all too much for her? I am so used to being right there to comfort and support her. She is transitioning, but so am I really. This period of change is hard, but necessary.

There is more to come, so I better "batten down those hatches".  For sure that wind will pick back up again.  Hopefully, setting us back down somewhere safe and equally comforting.  Those winds of change can be a good thing.  I feel the need to repeat that to myself.  Those winds of change can be a good thing.

What is Hope

As parents of children with life threatening illnesses, or neurological impairments, we often cling to "hope."  The hope that oneday things will be better, as we struggle to manage day to day life with our children. So recently, I began to wonder what exactly is hope, and how does it, or the lack of it, impact our family lives. Of course I started with Wikipedia. Wikipedia, that super cool virtual dictionary at your fingertips. Here is some of what I found:

Hope is defined as, "The belief in a positive outcome related to events and circumstances in ones life." Emily Dickinson wrote in a poem that "Hope is the thing with feathers that perches in the soul." Hope can be passive in the sense of a wish, or active as a plan or idea, often against popular belief, with persistent, personal action to execute the plan or prove the idea. Hope is important to both well-being and educational performance; people low in hope are more likely to be anxious and depressed.

Personally, I believe it is hope that propells us into action. The action of obtaining effective treatment for our children, of researching options, and meeting our own personal needs. Remaining hopeful is one of the best ways to ensure your individual happiness, as well as the well-being of your children. Unfortunately, hope does not always produce a perfectly positive outcome. I know far too many families that have lost their child to cancer,and many families struggling daily to find help and services for their children with neurological impairments such as autism. Although, these families fight hard and never give up hope. They are some of the strongest people I know.

Recently, a fellow autism momma friend of mine, told me her 12 year old formerly nonverbal son with autism, has recently begun to speak some words. She quickly followed it up to say, "I guess we should never give up hope."   I also know a local family who has a son who battled the same brain cancer as Ethan. They are now preparing to go to THON with a healthy and continually progressing 2 year old.

You certainly do not need to have major life challenges to appreciate the positive effects of hope. We all need hope in our daily lives. Whether it be the hope that you will finally get your dream job, or that your child will begin to do better in school, or that your husband will unload the dishwashwer without being asked.  So, the next time you feel that little bit of pessimism starting to take over your thoughts and eventually actions, remember the importance of hope and act on it.

Lisa