Today, I have been working on updating my family calendar, whittling down our to-do list and brain storming exactly how I am going to explain Asperger’s syndrome to my sister who will be staying with us while the husband is in the hospital and during his recovery process. It is all a little overwhelming (I seem to use this descriptor on a daily basis these days) seeing how our calendar is expanding into
Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers, and things I need to remember all over the place. I have five lists to remind me that I need cat litter, dish soap, and a three ring binder so that I don’t have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family’s master phone list, which I have two versions of -- one on the computer, one hard copy.
I have three calendars. Three. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011 allowing me to highlight the important dates.
I am that bad. I need the three calendars. If I didn’t have them, I’d be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband “I dunno, look on the fridge.”
The Kid Manual (aka Welcome to Our Asperger’s) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says “I hate you,” he’s really saying “I lack the ability to process and handle this situation at this particular moment in time?” How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?
Asperger’s affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to “put him to work.” My stomach dropped. You can’t just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big but to this statement: Asperger’s defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it’s not filthy either), but I’ve learned to accept the fact that the kid’s favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home. For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren’t what one would consider typical.
My mother, when she thought she would be able to stay in our home during my husband’s surgery, told me I shouldn’t worry because she wouldn’t put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, “Grandma, stop talking to me!” in a not-so-polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He’s not saying it to be disrespectful; he’s just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We’ve worked tirelessly to correct this method of communication, have taken our first steps into the world of “I require a minute to process this, Mom, please” and I don’t need it undone. The kid doesn’t need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met. And meeting that “stop talking to me” rude-sounding statement with anger is a recipe for a full blown autistic meltdown.
I need my family to accept that my son is autistic; that he has Asperger’s and will never grow out of it, but rather into it -- he’ll meld who he is with the world he lives within to make his life work for him. I need them to accept that it’s okay to be different, to meet a child’s needs differently than they did with their own children; and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don’t have a back-bone. Or something.
I have a child who does not function like typical children and that means I do not function like a typical mother (and ‘typical’ would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neurotypical children and trust that I know what I’m doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn’t take long for someone to undo all that hard work -- hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).
The snarky part? Well, that’s me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know it's autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children’s brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger’s told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here’s a medical release you can take to said doctor to discuss the matter further.
Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family’s (constant) parenting advice. It would start with “If you think you need to tell me what I need to do with my Aspie boy based on what you did with your typical kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:
- Uh-huh, I understand what you are saying. Thank you for the input.
- I have tried that, thank you, but it did not work for us.
- It’s a sensory issue, so it requires a different approach. I appreciate your concern.
- That is a typical behavior for Aspie kids, but we are okay with it.
- Relax about it.
- He’ll live.
- I’ll live.
- You’ll live.
- That concern is on our master list. We are addressing the concern that precedes that one in order to better address the one you speak when the time comes in order to achieve the best outcome for my boy.
- In the big picture, we are okay with that. I’m sorry you aren’t.
- That service is unavailable at the moment/we are wait-listed/it is out-dated/it is not for his particular disorder.
- If he doesn’t like it, it’s okay. I don’t like seafood/country music/fleece/spiders/cotton balls. It’s okay to have preferences and unique tastes. Its okay to not like certain things and fear stuff. Forcing it on him is not okay. He is an individual. Please respect his boundaries, not just as an Aspie kid, but as a human.
- Please re-read what Asperger’s syndrome means for my boy. You obviously missed something important, which is okay because this isn’t easy for anyone.
- It is really okay for him to not want to hug/be tickled/be touched/have his personal space invaded. It’s not you, it's him and it will not cause sudden cardiac arrest.
- My name is on the birth certificate and he lived inside my body for 10 months (yes 10 months, that 9 month thing is a lie!), plus I’ve spent 10 years being his mom, so I am using that power to veto your suggestion and/or assertion.
- My child is not just like your child. If he were, he’d be a clone. So far as I know people have not been cloned yet. I’d be happy to parent the cloned version of your child or vice-versa when the technology is available. At that point, we can test your method. Until then, I respectfully decline to try it your way.
- Really. If you do not think he needs medication for his ADHD I understand. You go ahead spend the day with him un-medicated, just make sure the first aid kit is stocked and remove any object that can be broken or cause physical damage to a person or my house. As a matter of fact, take him to your house.
- You can’t convince me that 500 grams of sugar is good for any child. Yes, sugar tastes wonderful, but giving too much to a child is like feeding a Gremlin after midnight. If you are confused, please watch the movie before deciding to give my child a lollipop the size of his head and insisting he eat it all in one sitting. (You might want to watch the Exorcist as well.)