Having a child with autism is definitely rewarding, but it also comes with its share of difficulties. Though I know it doesn't compare to having a child with a life threatening illness, or physical impairment, having a child that is prone to eloping is certainly scary and dangerous. I wanted to share how our life looks with a child that is in constant danger from himself. No two individuals with autism are alike, and many children with autism do not wander. In fact, the saying goes "if you know one person with autism, then you know one person with autism". However, I suppose before I begin on the undertaking that I will describe below, I wanted to inform my friends and family about our journey and the steps we hope to take next because I know we will need support and because I want people to be compassionate towards families with struggles like ours.
As most of you know Jacob was diagnosed with autism early on. He wouldn't engage with us. The look in his eyes was blank and he just stared right through us. He wouldn't gaze at us, he wouldn't imitate our smiles, and it was devastating. Through intensive ABA therapy Jacob has learned to communicate on a simple level indicating his basic needs. Only this year has he learned to follow our point to look in a certain direction, but he still does not grasp the idea that he can point to something he wants. Though he is reading and counting at a level far beyond his age, many things are still lacking in his development. The main things include understanding danger and communication. For as long as we can remember Jacob has had the desire to run. In the autism world, we call this elopement. Elopement is when a child who is physically, mentally, cognitively or emotionally impaired escapes, wanders, or runs away unnoticed or unsupervised.
Our life right now looks a little something like this (in terms of elopement only):
Each day we must deadbolt our doors to ensure that Jacob is safe inside. We wear our keys around our neck because if Jacob were to find a house key, he would immediately take it to the door to unlock it and run out. He has even watched me (without my knowledge) put the key deep down in my purse, waited patiently until I went to the restroom, climbed onto the counter and dug through my purse to get the key, and went to unlock the door. Thankfully, I caught him. When someone comes over, we have to remember to lock the door because even one mistake could mean life or death or losing him. If he notices the door is not locked, he will bolt outside straight into the street. We have alarms on the windows and doors so we can hear if he gets out, so for now he is pretty safe in our home. However, out in the world, its a whole different story. Jacob will be 5 years old this month. He yearns for freedom and independence. When we go to the grocery store, he no longer sits in the cart or wants to be held. He wants to walk like most kids his age. When we allow him to walk, he drags his feet to try and get us to let go of his hand and then will take off running. He will not walk beside us, so we can rarely take him shopping or out to public events. If we do need to go somewhere my husband usually has to hold him tightly to keep him from getting away. I no longer have the strength to restrain him for long periods of time while he hurls his body back and forth, so I usually have to leave wherever I am right away when the behavior begins. It really limits where we go as a family. Of course, sometimes he is perfectly ok playing a game on our phone and riding in a stroller, but as he grows, he is becoming less and less impressed with being confined and we want independence for him. The other day, some sweet neighbors were all gathering outside in our cul-de-sac. To be able to talk with them, my husband and I took turns. While one of us spoke with the neighbors, the other one chased Jacob around as he ran from house to house to garage to yards. My husband would give me "the look" and then we would switch. This is regular life for us. Its not something that we harbor resentment about, it just is our life. This is why I have been searching for answers for us. I have spoken with several moms who have kids who were bolters and the same is true for almost each family, the elopement doesn't end until the children are teens. Yesterday, I spoke with Jacob's doctor and she agreed that this behavior typically gets worse as children get older and smarter.
To be honest, I haven't seriously considered any help until now because part of me really thought Jacob would outgrow wandering. Autism is a strange thing. Even with all that we know about it and all the research out there, no one truly understands autism. There is no known cause or cure for autism. The stories in the media of children who wander are devastating and tragic and my husband and I have this burden each minute of each day.
After Jacob's most recent wandering event, when he snuck out of a building and ended up outside, a friend of mine contacted me about autism service dogs. She said that she would be willing to donate money through her business to an non-profit organization for Jacob if he got accepted into a service dog program. As I have read more and more about these remarkable dogs, I can't help but to hope and pray that Jacob will be accepted into the program. We have officially decided to apply.
My hope-I realize that a service dog is extreme. A part of me keeps thinking that people will not understand our desire or need for a service dog because they do not understand the risks that Jacob has daily. I have decided to officially not care about what people will think and to just go for it. As my best friend told me when I discussed my hesitation with her, "If there was a pill for Jacob to keep him from wandering off you would give it to him in a second. This dog is that pill. It will keep him safe. It's a no-brainer." Another friend told me, " Making sure Jacob isn't in life-threatening danger every second is what's dramatic, not getting a service dog. Getting a service dog gets rid of the drama." I also discussed it with his doctor and several dear friends who all seem to agree that service dogs really change lives. Not only will the dog keep him safe from harm, it will be trained to find him if he gets out, help him with social abilities and so much more. This is a new treatment for children with autism and I feel that it will be life changing for our family and most importantly, for Jacob. A service dog would keep Jacob safe, give our family freedom to the outside world, and give Jacob independence. I wanted to write this to ask for prayers. It's generally a very long process taking between 12-24 months.
Please watch these videos to learn about autism service dogs. These are examples of families like ours and watching these videos brought tears to my eyes as I imagined the possibilities a service dog could bring to our family.