Wednesday, September 12, 2012

Welcome to the Machine




Here is a list of things I've learned from various professionals along this journey we call autism. Note: These are not meant to be evidence based conclusions, rather anecdotal evidence from a parent about my child. Although, I am an expert on raising a child with special needs... so maybe not that anecdotal.

From Pediatricians:

1. There are no dysmorphic features exclusively tied to autism.
     Although, many of us have developed a good "A-dar" it is impossible to diagnose a child from a picture.
2. There is no scientific or genetic test for autism, although there are several genetic markers and                                 commonalities in the autistic brain.  So, at least, not yet.
3. Some ailments may not be related to your child's autism. Example: you didn't get the chicken pox because of the autism.

From ABA Therapists:

1. It is SOOOOOO much easier to direct your child than to re-direct your child. Kind of simple, it is easier to lead than to follow.
2. Spanking any child because they were hitting is counterproductive.
3. Time-outs should be used sparingly and with great importance. And sometimes the time-out is for you.
4. ABA techniques work amazingly well on NT kids!
5. All behaviors have a purpose.

From Occupational Therapists:

1. There are more than 5 senses (with the extra three being sub-divisions of touch/feel).
2. "Clumsy" is not a diagnosis.
3. Proprioceptive Processing Disorder is.
4. The symptoms of a sensory processing disorder affect much more than simply that sense.
5. "Poor Trunk strength" or "Low tone" isn't something you lift weights to correct.

From Schools (Teachers and administrators):

1. All kids do strange/weird things sometimes.
2. Most first graders are fascinated/obsessed with the losing a tooth process.
3. The NT kids in your class are not cruel, but they will discover that your child is different between Kindergarten and First Grade.
4. 3 or 4 of the NT kids in your child's class (always girls) will really want to help reach your child, and go out of their way to include them. God bless those typical peer models.
5. Fighting for as many services as you can get, might not be best for your child. What I mean is, the school district is not necessarily your enemy and you should be fighting for what you think is best for the child... not for simply as much as you can get.
6. The school district might not have the money available for "what's best for your child"... but, that's when you fight them.
7. You are going to have a long relationship with your school district... try to make it a pleasant one.

From your child:

1. Your child already knows he/she is different and probably has real trouble expressing it.
2. Your child has emotions, but might have real trouble expressing them.
3. Your child loves you, but might have real trouble expressing it.
4. Your child appreciates all that you have done for them, but has real trouble expressing it.
5. You have to work harder than NT parents, and don't always get to reap the rewards. But, sometimes... you do.


In a few days or so, I'll write a list of the things I wish I hadn't learned, and it will be a lot more comical.

Thanks for reading. This is a good list to give to a friend that just had a child diagnosed, because I'm fairly certain if you've been in the game for a bit, you already knew all these things.

-Jordan
   

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