Sometimes It Is Hard to Stay Cool

I wear these two hats, Mom and Advocate.  I feel an intense passion for both.  Sometimes, I find it very difficult to notice when I change my own hat!  One minute, I can be sitting at the train station, singing/signing a song to my son while we wait for a train, and the next thing I know, I am embroiled in a conversation about inclusion! 

These frequent conversations happen rather naturally, usually when someone asks me questions about my children such as, “So, do you know exactly what to expect for Carson when he’s older?”, and when comments are made to me (or within my earshot) about “those behavior kids”.  I think it is best to not make any assumptions about Carson’s future or about “those behavior kids”, because those assumptions can lead to resentment, low expectations and segregation (just to name a few)

I recently signed up for a webinar series, the Fundamentals of Inclusive Education through the University of New Hampshire, as part of a research study (thanks for pointing this out Kristin;). So far I have done one pre-test, read 20 pages, and watched a 90 minute webinar (12 or 13 more to go) and I already have already acquired some more powerful language to help me to articulate my rational for advocating for inclusion for my children.... for all children.

 "The least dangerous assumption" ....There it is!  I wish my keypad had music notes;)

I want everyone to assume that Carson can understand them, even if it doesn’t appear that way.  What’s the harm in assuming he understands, even if he lacks the ability to communication and control over his body enough to prove it, at this time?  Assuming he understands will help to protect him from inappropriate conversations and neglect that can occur when people dangerously assume he can not understand them (for example).  

Could assuming that he would love to play Follow the Leader with a bunch of other 5 and 6 yr olds, be harmful?

I will embed this perspective in my brain and make decisions as a mother and an advocate that reflects this, because I believe it is the least harmful approach.  It is so easy to get confused, there is so much advice, and such a variety of perspectives.  Some people are truly inspired to help us along on our journey, others are on there own agenda (to which they are entitled).  My job is to decipher who to trust.

I am a trusting individual but, not just of others, I’ve learned to trust myself.  One very important thing that advocating has taught me, is that a university degree does not equal a higher understanding of my child than I have.  Through Carson and Blade’s Doctors, Nurses, Teachers, and Therapists, and their confidence in me, I’ve learned that educated people are capable of making honest mistakes, just like I am.  When Carson was 3 years old I dug deeper than I ever thought possible to forgive a life threatening mistake in the hospital.  While the mistake was happening, there was a voice inside me that knew something was wrong, but I allowed a first year residents’ education, intimidate me into silence... the result, a swarm of doctors running with my baby on a bed to the PICU.  I forgave her, she learned, I learned, that’s life.  SCARY!  Ever since then, I trust my inside voice, and let it out.... just in case I’m right.  What is the harm in that?  I’m wrong I may feel embarrassed, but maybe I’m right....

I don't mind looking foolish or over-protective as much anymore.

Just as I hope that people act as if Carson can understand, I hope that people understand, that Blade does not “try to be disruptive”.  There is danger in assuming any person's motives for any one behavior; if a person believes that Blade enjoys behaving in an out-of-control manner, or that he decided to do something mean,  it would be difficult to stop from feeling resentment towards him and judgement toward his family.  Even unspoken resentment can seriously damage a relationship and impair self-esteem.  The best way to avoid the resentment, is to have a less harmful assumption of his motives in the first place.  Instead, assume (if you must) that he is having a difficult time coping with life.  Assume (if you must) that he is hurting inside.  Assume (if you must) that he is hungry!  Those types of assumptions will provoke compassion and responsiveness, which is exactly what he needs. 

This enlightenment has caused me to review my son’s coding assessments carefully, and to seriously consider the difference between diagnosis and assumption.  I owe it to my children to edit out, all of the harmful assumptions in their lives which have the potential to limit them.

                       Never let anyone make you doubt your dreams!