The day Peanut was diagnosed was the last day of life as we knew it. Everything changed. It was a slow change, but drastic none the less. Every day I wake up at 6am so I can get a shower before both of my children wake up at 6:30am. I'm by far not a "morning person" and I can't even begin to describe how much I would LOVE to sleep in. I can't shower while the kids are awake due to safety concerns. One symptom of Autism is a lack of safety awareness. Combine that with Pica, ataxic motor movements, clumsiness, and Sensory Processing Disorder and you have 2 energetic balls of injury. My husband does what he can, but he currently works 2 jobs to support all of the expenses related to Autism, because you see, almost nothing related to Autism is covered by health insurance. (Even if you do not choose to use Biomedical treatments).
After the children wake up they settle themselves in front of Curious George (on TV) on the couch (Peanut usually curls up into a tiny little ball until he's ready to enter the world with the rest of us) and I get started with our day. My husband jokes that I'm "the bartender". I line their cups up on the stove with juice and then I get to work dividing out their morning supplements. Some are mixed into their juices and others are served up with a small bowl of cereal and neither child gets the same thing. We then move on to diapers, breakfast, and getting dressed. In the midst of all of this I manage to fit in a cup of coffee and maybe some food (if I'm lucky). The rest of the day depends on our schedule but we are usually out the door by 9am. Peanut has school (special ed preschool with ABA worked in) 16 hours a week at various times, he has private sensory integration therapy and music therapy and 4 hours a week of home ABA. He also has appointments with his specialists. Sassy also has many appointments for her tummy issues and sensory issues (including an appointment this month at a local Autism clinic to be evaluated for Autism).
I have a planner that I carry around with every appointment and phone number needed for our life. I have post-it notes for my "to-do" lists plastering the pages of my planner. I spend a part of each day in food preparation because of their diet (Organic, GFCFSF). I also spend time on data collection in regards to behavior as well as a food diary (to track down any culprits of belly issues.) We have a white board in our kitchen to list what we are working on this week, to keep us all on the same page. Every interaction is an attempt to be therapeutic. An ABA principle, OT, PT or speech goal may be worked into everything we do. Everything has a therapeutic purpose in our house (for the most part). Some may read this and think it's taking things a bit too far, but it's the reason Peanut has made such a HUGE change in such a small span of time, and why Sassy's issues are harder to notice.
As I said before, my husband works 2 jobs so there are many nights when I get the kids bathed and off to bed on my own because he is still at work. Although it is hard for me to do this all on my own, it is even harder on him to be away from his children for so long. After the kids get to bed I spend some time to pick up (sometimes, lol), and unwind. You can usually find me on the couch with my laptop on my lap and the TV on. Most of the time the TV is background noise and I'll have multiple browers open to the various thing (all related to Autism) that I am reasearching at the time. Oh! Don't forget, I also need to work every day housework into my day/week too!
Some days are good days and I actually can forget for a little while that we are ever effected by Autism, and then other days are rough...real rough. We deal with various issues related to Autism ranging from behavior and communication issues to tantrums and head banging. I have tried to describe what it's like to have a child "stimming" all day long. For me, it's what it must be like to endure Chinese water torture. You know, when they tie you down and slowly drip water on you in the same spot over and over and over again until you snap and go crazy? It's like that. At first it's no big deal but the more and more it happens over and over it starts to get to you. Part of the reason for this is when Peanut stims, it's usually on me. He bangs his head or body on me, he head butts, pinches, squeezes or hugs one of my an arms or legs (which makes it difficult to do pretty much anything). This is the only thing I have encountered in life (so far) that has evoked such a strong reaction of anxiety in me. Combine that will Sassy's tantrums and you've got an anxious, stressed out mommy. By the end of the day I'll be ready to scream, I'll have little patience and I may even have the shakes.
Don't get me wrong, I love my kids and despite all we deal with on a daily basis, I would NEVER change who they are and where our family has been on this journey. Call me crazy, but I have been able to find beauty in Autism as well. Autism has brought me to find pure joy in the smallest things, like my child uttering what may seem to be the simplest word or watching them interacting with another child. It has taught me to look at the world from a completely different view, and it has shown me inspirational strength. So what if our house is packed full with every possible therapeutic toy known to man. So what if our toys are all packed away in clear rubber containers and labeled with pictures (to encourage communication and force interaction to ask for help). So what if I have picture strips all over the house to explain how to use the potty or wash your hands. When my child turns to me and hugs me and says, "I love you." I don't take it for granted. I hug them and say it back and then I hide around the corner and cry my eyes out. Those moments will never get old or taken for granted. Those moments will always be treasured.
Autism is so much more than is illustrated in the "What is Autism?" on an informational website. (Although these sites are very important). I urge all of my fellow Autism families this month to share what Autism is like for them and what it means to them. Feel free to share your story on my blog or facebook page. Lets go beyond the definitions and share with others, so we can help them to understand more. If people can begin to understand, then they can begin on their journey of acceptance and acceptance can go a long way for our children.
I again will quote Temple Grandin tonight, because it is simple, true and powerful.
“I am different, not less.”
Temple Grandin
God Bless,
Mommy Provost
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