Wednesday, July 4, 2012

"Science" of Autism-Who Gives a Crap-Practical is What Counts

Actually this post came to me in the middle of the night after drinking a margarita in celebration of Fourth of July. I know, the most amazing things come to mind when your brain is marinated...and yes it was only one (it doesn't take much to get me buzzed. I am defintiley a cheap date). But it was a margarita of my making, not one of those frozen concoctions..the real thing and no, I don't go light on the tequila.

  • 2 shots of tequila
  • 1 shot Cointreau
  • 1 shot freshly squeezed lime juice
  • Salt and lime wedge, to serve
I use Triple sec instead of Cointreau (its just a cheaper version of an orange liqueur)....Also play with the ingredients a little bit. I stick with the rule 1/3, 1/3, and 1/3.  I also don't add the salt rim.....Seriously who needs the bloat the next day on top of a  hangover?

But what came to me is the fact that I am tired of all the scientists and the doctors looking at my children as some kind of medical experiment. Now I do know that in many ways they mean well. They are trying to figure out what causes autism; what the brain chemistry is like so that they can ameliorate some of the more devastating effects of autism; or even trying to figure out how best to help those with autism live better, happier and more productive lives. The issue for me is that they don't actually ever come up with anything that is useful for our day to day world. We do that on our own. It's why, you may notice, that I only review books/activities that come along with practical information. Nothing sciencey or highfaluting. I lost patience with all of that years ago.

So here is some advice I have for new autism-warrior parents or even some who have been at this for awhile....ignore "the experts" for the most part and find out what helps your child and works for your family.

Step One: Examine your environment. Does it benefit your child? If the answer is yes then keep things the way they are. If the answer is "no" then take a good look at your house and ask yourself these questions? (By the way all questions should be viewed from an age and developmentally appropriate angle)

a. Is the house safe for my child? Yes its baby-proofing for older chidlren but it is necessary.

b. Are there the child protective locks and alarm systems if need be? Unfortunately this can be very expensive, but if your child is prone to wondering it is a necessity. No you cannot nail shut the windows that is a fire hazard. I would even recommend talking to a local fire house/emergency services group/police about your child and getting ideas from them about safety as well. Some police departments even have a registry for special needs children so they know who they are if found or especially when they get older and may not act age appropriate (this is good for physically grown children, in fact I would even say this may be a necessity.)

c. Is there a sensory area for my child to help with meltdowns or even for time outs? This would be a corner in your house full of beanbag chairs or cushions, as noise proof as possible (maybe some "white noise"), no odd smells and where a small child could even take their clothes off if they want. Something so comfortable the child may feel safe and cocooned from the outside world. It does seem counterintuitive if you are trying to include your child in society to create a place without any outside contact but believe me when I say that everyone needs this, even we do at times, we just understand how to create our own space without any help or support.

d. Are there activity items that are self-reachable or are they dependent on me for continued entertainment? Fostering independence is important and is something that should be done slowly and carefully. It is important that your child learn how to engage themselves in play without you having to plan every moment of their day. This may be easier said then done. However, it is a skill they can and need to learn. Initially if they are overwhelmed by their choices give them two things to pick from..if they can't chose then help them learn to decide how to decide...slowly over time they will understand how to chose and how to work on their own when they want to.

e. Can they get themselves drinks or snacks on their own? Is this accessible for them? Again independence needs to be fostered. They should learn how to take a juice box or sippy-cup drink that has been set up for them. They should not have to ask each and everytime they need something. Learning to understand their own bodies when they are hungry or thirsty and then managing for themselves is a big step to personhood. Again this is over a long period of time. Each step they take may be minimal but you need to have it organized appropriately, especially for older children (honestly, its only fair).

f. Can they use a computer or game system independently? Figure out the protocols in your house surrounding the use of the computer, game system or ipads etc. Teach your child what these are and then let them learn how to manage their time. (Again this is a long-term goal. My boys really didn't get a handle on this until well into highschool and honestly the entire protocol had to be reworked once they entered college. But learning began as early as kindergarten.)

g. Have you set up schedule clocks? Timetables? Charts? Reward system? It is very important that a child understand their boundaries and the rewards and consequences that go along with everything. Don't think that they are going to remember anything, even if they have amazing memories. For some reason they might have these genius level memories when it comes to their videogame passwords but still will not be able to remember to brush their teeth..or how to tie a shoelace. It is all counterintuitive I know  but that is the reality.

Step two: Examine their educational situation and goals. Ideally this should be created with the IEP team and/or the teachers involved. However, if you are having an adversarial relationship with your district do this on your own, if for no other reason then to provide information if you need to go to court.

a, How does your child function in the classroom? Can they function in the classroom?

b. Is the classroom sensory friendly? Lighting, smells, bathroom, chairs, toys, computers, rugs, etc

c. Does the classroom meet your child's needs? Is there access to the teacher? Placement at an appropriate table? Seated with children that are accepting and friendly?

d. Is everything your child needs accessible in the classroom? This is when you look at everything from an occupational therapy point of view. Ex: Fine motor control may be needed to open a door, hold a pencil or get into a cabinet. If that is a problem are there devices in the room to help foster your child's independence so they can be like their peers?

e. Is the teacher/para trained,or have extensive background, in understanding autism/SPD/ADD/OCD/epilepsy.etc?  Note: This may not always work out the best. One of the teachers I had to threaten my district over had an extensive autism background, Her problem was that she refused to deal with my son as he was, not as she decided it was going to be and wouldn't work with him appropriately. Another highly trained teacher thought that he knew better than anyone else and reworked  CM2's well-thought out program which set my son back terribly in his education. (This "teacher" decided he was going to be a hero then declared my son "cured" and had no more problems. He recommended no special education services at all..this was my first foray into the legal side of special education and yes we won big time once we presented our case to the district director.) So this can be a tricky situation and one that does need to be monitored. However, all-in-all over the years, I have found that those with more of a background/training in autism did understand and work better with the boys.

f. Are the educational goals being worked on or ignored? Is your child really learning what they are supposed to be learning or are they held to a lower standard than they are capable? Are they challenged? Are they taught how to self-help through their disability? Are they taught coping skills and social skills-especially social skills in unstructured situations like recess and the lunchroom? Does the educator understand that one time is not necessarily enough in teaching your child a skill?

g. Do the accommodations meet their level of functioning or are they just given pro-forma accommodations? Is everything basically tailored to your child as it should be? Are the accommodations a help or a hindrance? Do they support their learning disability or create a dependency where one should not have to exist?

So these are just a few of the questions you need to continually ask yourself when creating a program for your child. The scientists will not tell you this. Even the practical theorists will not tell you all of this in one shot. You need to organize this on your own. Cobble together the information and make sure it all is the desired fit.

I would associate this with buying a couture gown. Each gown is honed to the body of the owner. It is specifically fit for only one person. So should your child's program fit only them, Remember every aspect of your child's life plays off the other. Everything, from home and school is intertwined. Everything should be consistent, and teach the same skills the same way.

The interesting thing about these ideas is that I don't think for neurotypical children the issues are any different. The difference lies in the fact that noone really talks about it. It just gets done, simply because the NT child can pick up naturally what we need to make a concerted effort to teach our children. That's all.

Honestly, it is in this regard when all parenting becomes simply a natural phenomenon. Something you understand, feel and know at the deepest part of your being. That is why we don't always need the scientist/expert to tell us what needs to be done for our children. We kinda, sorta already know what is needed, we aren't just always quite sure how to go about doing it. Now that is when practical advice comes in handy at every age and that is what will help our children function in the long run, not some esoteric question about causation, catalyst, genetics or whose fault it is that your child is autistic.

Until next time,