Down the Rabbit Hole...Again?

It's not as if it was a huge shock to me that Jackson was diagnosed with autism. What shocked me were my own reactions to hearing it. I expected it, it should have been easy but it wasn't. I would even go so far as to say that it was harder looking into the face of an autism diagnosis the second time around than the first. The first time, I had no idea what to expect, or what would be required of me as a mother. The second time, I knew how difficult the road ahead would be and despite my thinking I was ready to take on that challenge, I wasn't sure I had enough strength left to do it all again (but this time, I lived thousands of miles from my family support system as well as the government resources). This time, Jeremy and I would be on our own and only have each other to lean on in the most difficult times. I went through the grieving process, the same way I did with Braden. I had to let go of the future and the hopes and dreams I had for Jackson. We have to live one day at a time in our home and that's the way things will be until the day I leave this earth. Only now I have to worry about who will care for BOTH of my boys after I'm gone.

Jackson isn't getting hours and hours of therapy the way Braden did, because the State of North Carolina bases their system of helping these children on the income of the household. Jeremy makes decent money at his job, enough for us to live comfortably, but the amount of money it takes to pay for GOOD autism therapy would require us to be making much, much, much more. Here is how I feel at the end of most days: helpless, frustrated, sad, alone and just plain worn out. Can you see why I have been writing so much about the importance of compassion? Even just having someone come and listen to me, and share some grown up company with me is a balm to my soul. Since moving away from our support system, we have been relying on our friends, neighbors, and our "church family" for support, and we have been truly blessed and I am so grateful for that help, I don't have enough words, or the right words to express that kind of gratitude.

One of the most difficult things for me, and for Jeremy, is asking others to share our burden. For the record, I am NOT calling our children a burden, our children and autism are separate things. They are NOT autism and autism does NOT define them. They each have their own personality and their own way of seeing the world just like all of us, the difference is that THEY carry the burden of autism and sensory processing disorder. They are the ones who struggle to communicate their feelings and needs and get so frustrated by their inability to do so that they have meltdowns. They are the ones who have such a hard time coping with our loud and intense world (which they don't understand) that they have no other option but to tune out EVERYONE, including their own parents who love them. Any parent who has a sick child, even if they only have a cold, wishes they could just "make it all better". I know my children are locked up inside themselves and it…breaks…my…heart, every single day—that is the true burden of autism. I'm forced to watch my children suffer the effects of this disorder every day of our lives and I do my best to help them get through the day and try to teach them how to cope with this burden that has been put on them, and through them onto us too. The meltdowns, medications, IEP's and other frustrations are only byproducts of autism.

 I belong to a wonderful church family that loves us and wants to help us, as well as our family living back in Arizona. I know how hard it is for them to be so far away and how much they want to help, but can't simply because of the distance between us. I am asked very often by caring church members, "What can we do for you?" Jeremy and I both have NO IDEA how to answer that question. I can't expect them to hold my child down while he has a meltdown, or understand what they are trying to say when they can't say it. Most people don't understand autism the way we do, they don't understand our children the way we do, so how can they help? The fact that they care enough to even offer warms my heart, but how do you share that kind of burden? With Braden, we had a trained professional (paid for by the state) who would come and work with him for three hours every day and I would get a chance to either catch up on stuff or just relax. Boy, do I miss that! The most I can ask is that they try to understand what we go through each day as a family.

Autism affects 1 in 50 children now. When Braden was diagnosed, the number was 1 in 88. Everyone is so busy asking themselves what is causing this "epidemic" and how do we stop it, how do we cure it? Don't even get me started on the vaccine argument. I have my own theory as to why we have high numbers of autistic children in today's world, but my theory probably only makes sense to people who are religious and believe that our spirits lived before we came to earth and we will go on living after we leave it. (FYI prepare for more discussion on compassion) I'm going to share my theory anyway. First, there were probably several people throughout history who were on the autism spectrum, but because the world did not understand the disorder to begin with, they were discarded human beings, thought to be crazy or they were simply put in institutions. Those that did learn to function in society are now hailed as geniuses (Albert Einstein and Nikola Tesla for example). We are simply more aware of the disorder and it's symptoms now, and therefore, the number of diagnoses would naturally go up. Second, I believe that God is a loving being and I believe he has saved many of those spirits who would be asked to bear the burden of autism in this life for a time when the world understood it better and would be more compassionate to them. He did not want them to suffer so much, because their spirits are so pure and innocent. They haven't come to earth to be tested like the rest of us; they've come here to teach us. I believe that through them, God is trying to teach the world to have more compassion in general. Why does God want us to learn that all-important lesson? He wants to remind us that he sacrificed his son for our sakes; out of compassion for us and by learning to be compassionate to others, we become more like him. Let me share a scripture (one of MANY) that I believe sums up what I'm saying: 1 John 4:7 Beloved, let us love one another: for love is of God; and everyone that loveth is born of God, and knoweth God.

If you're reading my blog, you obviously know someone affected by autism; I think that just about everyone in the world knows someone with autism now. I'm sharing my personal journey to help those who may not fully understand autism and how it affects not just one person, it affects us ALL.