April is "Autism Awareness Month." Like 99.9% of ASD parents, I couldn't be any more aware of autism if I tried. I think for us they ought to have an "Autism Unawareness Moment" and see if we could go at least one minute without being aware of autism. Okay, let's try it. And go - now! I bet you didn't even make it to 30 seconds without being aware of autism. It would be easier if we tried not to be aware of breathing or gravity or Dolly Parton's chest.
Autism is all encompassing. It dominates families. It dictates where you go, when you go, what you bring, how long you stay. It changes your life and the life of everyone in your family. Nothing is spontaneous. Everything requires careful planning. Autism is a lot of work. Autism is not easy.
Despite the challenges, life goes on. One of the biggest challenges is how to manage a life despite the autism. And not just a life for the person on the spectrum but for everyone in the family.
It's good that there is an "Autism Awareness Month" so that others can know about autism and that it is the fastest growing developmental disability in the world - "We're Here. We're Not Making Eye Contact. Get Used to It." This rapid growth also means there are more families dealing with autism's challenges. I have found most people are uncomfortable with the "real talk" about autism - that it can be hard, heartbreaking, and sad. Some ASD families don't like admitting the difficult stuff because they are fearful that people will interpret such admissions as meaning they don't love their kids on the spectrum. This is a shame as I think we would feel better if we could talk honestly about the exacting toll autism can take. And if we could feel better we would feel stronger and better able to cope with the difficulties.
As referenced in an earlier blog, I am a person of faith. My faith is one way I get the strength to do what I need to do with regard to my son and my family. I've also discovered a patron saint (or almost saint) for autism and ASD families - Blessed Margaret of Castello. Prayer is powerful and Lord knows I need all the help I can get!
So as I've been thinking about "Autism Awareness Month," I've been praying. I started to think about a prayer for ASD parents. What would I pray for?
For the times when I am overwhelmed, Lord, grant me fortitude.
For the times when I am confused, Lord, grant me clarity.
For the times when I am resentful, Lord, grant me tranquility.
For the times when I am sorrowful, Lord, grant me consolation.
For the times when I am exhausted, Lord, grant me strength.
For the times when I am frightened, Lord, grant me comfort.
For the times when I am frustrated, Lord, grant me peace.
For the times when I am full of self-pity, Lord, grant me perspective.
For the times when I feel I am at the end of my rope, Lord, grant me perseverance.
Lord, please give me what I need when I need it especially at those times when I don't exactly even know what "it" is.
And please, Lord, help me to remember to laugh!
I pray that for myself and for all Special Needs Parents. May God bless each and every one of you. Remember to rejoice in your blessings for the good God is so very good!
Happy Autism Awareness Month!
The earth-bound adventures of a reluctant alien astronaut and his not overly bright human caretakers.
So what is it like having a child with autism?
So, what is it like having a child with autism?
I get this question a lot and actually like it when people ask. Unless a person has significant contact with someone on the spectrum he/she doesn't really understand what an autism driven world is about. Saying that, it isn't always easy to convey what having a child with autism is like. After much consideration, this is what I've come up with -
For me, having a child with autism is like living with an alien from another planet. I call him the "reluctant astronaut (R.A.)" because he really didn't want to come to earth, had absolutely no interest in this space mission. As a result, he didn't pay much attention at the briefings prior to the mission so doesn't know anything about Planet Earth - nothing about language, customs, or Earthling niceties in general. In fact, he is so disinterested in Earth that even though he was sent here, he has absolutely no desire to assimilate into Earth society. Meaning he still doesn't give a rat's ass about Earth mores.
That's also how I "explain" things he does that are pretty much unfathomable to me. For example - for a certain time period he liked to sit in the toilet. No, not on the toilet but in the toilet. I reasoned that on the home planet the toilet is a jacuzzi. Although eventually we managed to break him of this habit, the jacuzzi explanation popped again during potty training when the R.A. demonstrated not only an aversion to the toilet but would have all out nuttys when placed on one. He was probably thinking, "Poop in the jacuzzi? What is wrong with you people? Miscreants!" That's what he would say if he could speak English or any Earthing dialect.
For a time I was also convinced that not only was he a reluctant astronaut but was actually an alien cat that somehow ended up in a human body. It does make sense -
Cat
Has to everything his way
Reluctant Astronaut
Ditto
Cat
Don't touch me!
Reluctant Astronaut
Ditto
Cat
Doesn't speak human language
Reluctant Astronaut
Ditto
Cat
Doesn't wear clothes
Reluctant Astronaut
Ditto (Well, would if he had his way)
Of course I don't really believe my son to be a Reluctant Astronaut.
But sometimes it sure makes sense!
Disclaimer: Although I sometimes describe things about life with my R.A. in a humorous way, please understand that I am not laughing at him. He is my son and I love him very very much. I come from a family that had its share of challenges and I learned from a young age that laughter is powerful. A situation cannot completely hurt you if you are able to find humor and laugh at some parts of it. So that's what I do. And I don't use humor solely with the R.A. My daughter was born with a heart condition that required immediate surgery. (No, I don't make good babies. They come out broken.) She was whisked away by ambulance to the hospital in Boston. It was all unexpected and traumatic. A nice young intern came to speak with my husband and me and was re-assuring us that nothing we had done caused the baby's condition. The stress and sorrow were overwhelming. When the nice young intern concluded I turned to my husband and said, "See, I told you it wasn't from all that smack I did during my pregnancy." The intern froze and then let out this huge belly laugh. Was I appropriate? Probably not. But I had to do something to relieve the stress. Astronaut life is stressful so find the laughter where you can.
And as G.K. Chesterton said, "Humor can get through the keyhole when seriousness is still hammering at the door."
I get this question a lot and actually like it when people ask. Unless a person has significant contact with someone on the spectrum he/she doesn't really understand what an autism driven world is about. Saying that, it isn't always easy to convey what having a child with autism is like. After much consideration, this is what I've come up with -
For me, having a child with autism is like living with an alien from another planet. I call him the "reluctant astronaut (R.A.)" because he really didn't want to come to earth, had absolutely no interest in this space mission. As a result, he didn't pay much attention at the briefings prior to the mission so doesn't know anything about Planet Earth - nothing about language, customs, or Earthling niceties in general. In fact, he is so disinterested in Earth that even though he was sent here, he has absolutely no desire to assimilate into Earth society. Meaning he still doesn't give a rat's ass about Earth mores.
That's also how I "explain" things he does that are pretty much unfathomable to me. For example - for a certain time period he liked to sit in the toilet. No, not on the toilet but in the toilet. I reasoned that on the home planet the toilet is a jacuzzi. Although eventually we managed to break him of this habit, the jacuzzi explanation popped again during potty training when the R.A. demonstrated not only an aversion to the toilet but would have all out nuttys when placed on one. He was probably thinking, "Poop in the jacuzzi? What is wrong with you people? Miscreants!" That's what he would say if he could speak English or any Earthing dialect.
For a time I was also convinced that not only was he a reluctant astronaut but was actually an alien cat that somehow ended up in a human body. It does make sense -
Cat
Has to everything his way
Reluctant Astronaut
Ditto
Cat
Don't touch me!
Reluctant Astronaut
Ditto
Cat
Doesn't speak human language
Reluctant Astronaut
Ditto
Cat
Doesn't wear clothes
Reluctant Astronaut
Ditto (Well, would if he had his way)
Of course I don't really believe my son to be a Reluctant Astronaut.
But sometimes it sure makes sense!
Disclaimer: Although I sometimes describe things about life with my R.A. in a humorous way, please understand that I am not laughing at him. He is my son and I love him very very much. I come from a family that had its share of challenges and I learned from a young age that laughter is powerful. A situation cannot completely hurt you if you are able to find humor and laugh at some parts of it. So that's what I do. And I don't use humor solely with the R.A. My daughter was born with a heart condition that required immediate surgery. (No, I don't make good babies. They come out broken.) She was whisked away by ambulance to the hospital in Boston. It was all unexpected and traumatic. A nice young intern came to speak with my husband and me and was re-assuring us that nothing we had done caused the baby's condition. The stress and sorrow were overwhelming. When the nice young intern concluded I turned to my husband and said, "See, I told you it wasn't from all that smack I did during my pregnancy." The intern froze and then let out this huge belly laugh. Was I appropriate? Probably not. But I had to do something to relieve the stress. Astronaut life is stressful so find the laughter where you can.
And as G.K. Chesterton said, "Humor can get through the keyhole when seriousness is still hammering at the door."
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