Monday, April 30, 2012

Jumping In with Two Feet While Doing a Cannonball

In a recent exchange on my facebook page an FB friend mentioned to me that I had two toes in aspiecamp. Another of my other FB friends said of course I did referring to the two boys. Actually, I think that the original intent of the comment was that I had aspergers like my boys. I have to tell everyone no, I do not.

Not that it would make a difference to me if I did. My boys are proud of who they are as aspergeans and I would be proud if I had aspergers too. However,  you can rest assured with all the therapy and all the doctors we have all seen over the years, when I posed that question "do I had aspergers" there would have been at least one "yes" in there somewhere. But no, nada. Nothing. Yet there was an acknowledgement by some of those obsessive qualities I embody. A tendency to perseverate. Not forget a darn thing. Remember odd pieces of information and oh yes...not give a whit what the world thinks when it comes to the boys. Of course, some would call that last idiosyncrasy of mine, parenting.

So why is this distinction important? To me it really is not. Some may think that it takes an aspergean mind to understand your aspergean child. I would have to disagree with that simply because my world is distinctly an aspergean world. OK now what does that mean? It means we do live in aspiecamp. In fact I would have to say that I am director, proprietor, and CEO of aspiecamp. I do for the boys what needs to be done and have always managed the house the way they felt most comfortable. In other worlds, I have jumped into the world of autism with two-feet while doing a cannonball and quite frankly I have never looked back....

When CM1 was little (5 years old) and newly diagnosed we moved into a townhouse with a large joint diningroom/livingroom area. The upstairs held the bedrooms and "playrooms." CM1 was obsessed with all of his belongings being in rows and organized just in the way he liked them. There was no deviation in his world at all.

Now I did not make the livingroom an adult oasis of quiet. I turned it into an area of childhood friendliness or aspie-childhood-friendliness. If you looked at a picture from that time period you would see a couch and a TV in the livingroom area. There would be a game console hooked up and a collection of children's videos. We had one computer at the time and that was also in the area. (This is when my parents bought me a little TV for the kitchen so I could watch the news and pay attention to the outside world.)

The special item in the room was a card table behind the couch with all of CM1's special belongings laid out as he saw fit. No one touched these items. No one came near them except for him. It was his island of calm in his world of turmoil and I was determined to let him have his way. Why was this table in the livingroom? Because this cardtable was where CM1 spent his extra time and I was not going to have him shut away from everyone else while he obsessed over his toys. I also was not going to take his possessions away from him in order to force him to be with us either. He may not have interacted with us at the time, but he was going to sit in the middle of us while he played.

The TV was also for the boys' use not mine. They watched their videos. they watched their cartoons..and yes cartoon network was a favorite. They played their games. I would engage with my sons and their games and videos. I would make sure that I became a part of their world. I knew that I needed to be in CM1's mind before I could figure out how to help bring him back and engage with the world.

Luckily this strategy worked for us. Luckily, too, that it became a way of life for us, as CM2 was as yet undiagnosed with aspergers as well. Interestingly CM2 never became as disabled as his older brother (Our odyssey began at the point when the doctors had no idea whether CM1 would improve and  become a full fledged aspergean or would completely regress.) I reasoned that since the house was an aspergean oasis CM2 benefited from the beginning even though he too would not be diagnosed for years to come. However, he did receive Early Intervention therapy and support that his older brother never had had.  Everyone from speech therapists to pediatricians didn't know what they were looking at with CM1 and those that had an idea were simply cruel. (That I never understood how anyone, especially those dedicated to educating children, could be evil to a small child, never mind one that they thought was disabled. That of course is another post for another day and a topic I have written about many times before.)

In our home, life was scheduled and organized. Life was made comfortable for what the boys needed. If they didn't like a particular food it wasn't eaten. (This was when I asked the pediatrician if I could give them Carnation Instant Breakfast as a supplement. remember this is way before pediasure or similar products.) If they didn't like particular clothing, as long as they didn't want to dress for summer in a snowstorm, it wasn't worn. If they didn't feel comfortable with a particular toy or game or activity it wasn't done. The house was a cocoon for them in a way, but that is what a house is supposed to be. An island of calm in a sea of confusion.

I remember that we even had a visit from a social worker attached to CM1's first autism-program. She came, looked at how everything in the house was organized, and had nothing to add. She seemed amazed at how we had configured the house and that everything was directed in a way that was best for the boys.  It was instinct to be sure for us. No one had told us what to do or not do. We just did what the boys needed and what made them happy. (By the way if your child's autism-program does have a social worker or therapist who will come to your house, let them. Their job is to find ways to help you and your child. I know there are scary stories out there about the intrusion of government, but in reality most of these people who work for school programs truly only want to help, not hurt families.)

Listen how we configured our lives is very different than when people let their children run their homes. It is one thing to create a situation where your children feel comfortable in their own living space and another to let them run rampant over your parenting. There is a huge difference between listening and directing your child and creating an atmosphere where they can breathe. There were rules and regulations and rights and wrongs and they were always followed by the boys. There were time outs and expectations even when CM1 was at his most impaired. Too many people confuse the two points....a child-friendly home does not mean an undisciplined home. A child-friendly home is one where the children can learn about expectations in comfort.

Eventually what you may find later on in family pictures, is that the card table disappeared and that the livingroom added a few more adult items, like chairs and even a coffee table. Over time with therapy, education support and medication CM2 became more secure in his world and moved passed the need to organize everything. In fact we have come to another era of aspiecamp and that is what I call the slob stage. We entered this stage with the onset of adolescence and have yet to leave it...and yes at times it drives me crazy, but I try to keep that somewhat to myself...

OK I am not really very successful with keeping things to myself, but I do try. Well mostly anyway...Except that I did overhear CM1 tell hubby that he is never getting married. He said that when women hit middle age  they go crazy and he is not going to deal with that again....So maybe I am not so successful hiding "annoyance" on my part....

Now the boys don't see themselves as being slobs. They in fact know where everything they need happens to be. But as with most with neurological issues, they lack what is called executive functioning skills. Truth be told if I didn't step in every once in awhile and make them clean up or organize just a little, some things would get lost or misplaced or mold would grow out of the corners of their rooms. (Of course at that point we could manufacture our own penicillin but I am not quite sure the FDA would approve.)

We have had to teach them to file their school work properly and create folders, draws, how to use their backpacks effectively, simply to ensure that their schoolwork does get handed in on time. But when it comes to their rooms, as with the cardtable from decades ago, it is about their comfort level and their comfort level alone. Nick-nacks abound in CM2's room. Research papers are everywhere in CM1's room. They take comfort from their belongings. And the total chaos of their existence. It is times like these that I remember the little boy obsessed with a cardtable, his toys and order. (And yes I do allow myself a little cry.)

Recently however, hubby and CM2 had to go through all his "chachkas," clean them, and put some away. There was no more room for what he needed on his desk. While it is important for CM2 to have a tactile remembrance of his belongings he needs to be taught what needs to go where and when to box items up and put them in storage. Yes we have a label maker and it is put to good use.

Of course when the semester ends we do need to go through all the papers, books, and their work in order to filter out what is no longer needed simply to make room for the next semester's items. I cannot say that this is easy for them but it is necessary. In fact it is no more easy for them then when we have to go through their clothes that they outgrow and replace them as well. Well at least the boys reconcile themselves when we do go through their clothes because what they don't use anymore all goes to the local community center. (God help me if I throw anything away. If the item has holes in it, it goes in the garbage behind their backs. I know that's not necessarily a good thing not to help them understand that sometimes things need to be thrown away but I do try to pick our battles effectively.)

As always, aspiecamp is in full gear. Once we jumped in with both feet while doing a cannonball we never got out. Sort of became stuck in our ways. But that is really how it is supposed to be. Aspiecamp is organized, reasoned and comfortable for the boys. Of course it still looks like a tornado came through my house on any given day, well at least the parts where the boys live (and yes at times I need to breathe deeply)...But in the meantime, the boys are happy, content and continue to grow, develop and be the best that they can be..tell me what more could you ask for?


Until next time,



Elise