The best validation I need is seeing Charlie learning and moving along on the road to the good life.

Out of many, one. E pluribus unum.

I have mixed feelings about the video myself. But what I have learned, is that Autism knows no ethnicity, it knows no socioeconomic status, it knows no specific country. What it does do, is that it becomes a part of a families life. They do with it to the best of their abilities. My families life isn’t poor enough to qualify for any state aid for PCA’s, respite, ABA therapy,special autism schools, or the medically required speech/OT that Sam needs. And we aren’t rich enough to afford it either. We are stuck in the middle with our insurance running out and Sam’s lifetime benefits building up. I would love for someone to come in for respite care, to have someone I trust or could afford for respite care, to have ABA in my home that would also give me a little down time to get caught up on life. My husband and I provide everything, every minute of every day with little break. Yes, I am one of those mom’s who quit my passion in life of teaching the last 15 years (of which you made known your ability to work full time). You don’t know everyones situation. I have other children besides my son with Autism. I have a husband who travels extensively. With the therapy we do get a week and the services I am trying to provide for Sam on my own with my own ABA version (which is not rocket science for anyone in education), and the fact that I have an older child who needs a mom too, I had to stay home to keep life together, to be able to track all medical expenses and deal with insurance, to do our homework therapy from speech/ot.

I am educated, I have 2 BA degrees and MA in education. My husband is just as educated. We have been in youth ministry as volunteers for 15 years, dedicating hours a week as well. We look to others as if life is great. We know when and where to take our son to avoid melt downs in public. We are 6 hours from the closest family support person physically. Sooooooo, I found some of the video validating. For me, it shows what life is like for people in my community who don’t see that side of us (because we avoid it). It is validating for me, so family (that is not near our “every day” life)understands why we finally resisted our desire to not do meds and do that to get Sam sleep he has not had for 3 years. It is validating for me for all of those people who stare at me when I have to use a harness (which is a cute monkey one) on Sam during those times in places I know he will be overstimulated and “run” in an unsafe manner.

While I too struggle with some of the video, it was validating for me in the hopes that some of my friends and family will see the things we go through, but I was too insecure to share with them. I DON’T want a pity party. I am incredibly sound in my faith, and share my validations as glory to God. But I want awareness to those not familiar with autism to be more understanding when Sam is screaming in line at Target because I didn’t have time to let him finish following the line on the floor he found (not because people think he is spoiled and throwing fit because he didn’t get a toy he wanted, I would love for him to want toys and actually play with them). I want awareness, so that when I miss a deadline for the church newsletter or a budget report because I have had sleeplesss nights and days running to school and therapy and am exhausted that people can be a little more compassionate. I want awareness, so I don’t have to write any more letters to legislaters, to insurance companies, etc…explaining how important early intervention is in autism for simple things like speech and ot therapy to be covered for more that minimal visits.

All I am saying Kristina, is that it is so easy to judge. We really don’t know what the grass is like on the other side. The only reason I mentioned my education, our middle of the road income, and my other activities in life, is to share with you that even though I have been blessed with some tools in life, autism can still be challenging. Just think of the single parent doing this, think of the parents with several on the spectrum, think of those with limited resources (not because the don’t know how to get them, but are not allowed access).

Validation can be hindering, but it also can be helpful.

Godspeed in your journey, just remember we all come from different places.

A lot of work to do to combat that.

telephone news and reviews…

I think Camille said it for me. And I was so looking forward to another rant about it.

*barfs on Autism Speaks, thinks she’s allergic*