On Jan. 5th, 2009, my middle daughter (J.M.) was diagnosed with autism. "Classic Autism." The words still ring in mid-air.
She was diagnosed at 2 yrs. 6 mos. As young as you can be, really, to get a true diagnosis (so I read). Recently I was asked, "How did you know?"
It was a lot of different behaviors, combined with her not talking by 2 yrs to lead me to start researching. I looked and searched for countless hours... putting square pegs into round holes in my mind. I wanted something to show me, tell me, anything to point me toward NO! She DOES NOT have autism. But that answer never came.
It was a long process, and is still in the works. But we are growing stronger.
I think of her prognosis from when she was 10 weeks gestation. She tested positive for the blood test labeled quad screen. Which, along with a second-level sonogram, tested her positive for downsyndrome. Longer story than this, but we wanted her and she was born.
She was always hard to take care of, and took the world by storm. She did everything early, except talk, or care about her sister when she was born, or reach her arms out to be held until just recently - after 2 1/2 years.
My Native, spiritual view - I think she was born angry. I think there was too much intrusion into her private world which triggered something in her that made the autism come to fruition. There was a lot of electro-monitoring during my pregnancy, and she really resisted all of this. She seemed to hate it. She would kick the monitors, run from them. The nurses were always chasing her. She would breathe too slow, then too fast, and had a hard time regulating herself at times. She just seemed, even from a fetal perspective - to march to her own beat.
My view at times is, "Maybe she is an old woman who is just pissed that the buffalo are gone. Maybe she woke up here and hates it." If this were true, and I had lived life long ago, I might be pissed off too.
But when I was pregnant, the prognosis seemingly bleak, I prayed that she would do something great for her people. She has taught us so much already, she has already done so much, so great.
She was diagnosed at 2 yrs. 6 mos. As young as you can be, really, to get a true diagnosis (so I read). Recently I was asked, "How did you know?"
It was a lot of different behaviors, combined with her not talking by 2 yrs to lead me to start researching. I looked and searched for countless hours... putting square pegs into round holes in my mind. I wanted something to show me, tell me, anything to point me toward NO! She DOES NOT have autism. But that answer never came.
It was a long process, and is still in the works. But we are growing stronger.
I think of her prognosis from when she was 10 weeks gestation. She tested positive for the blood test labeled quad screen. Which, along with a second-level sonogram, tested her positive for downsyndrome. Longer story than this, but we wanted her and she was born.
She was always hard to take care of, and took the world by storm. She did everything early, except talk, or care about her sister when she was born, or reach her arms out to be held until just recently - after 2 1/2 years.
My Native, spiritual view - I think she was born angry. I think there was too much intrusion into her private world which triggered something in her that made the autism come to fruition. There was a lot of electro-monitoring during my pregnancy, and she really resisted all of this. She seemed to hate it. She would kick the monitors, run from them. The nurses were always chasing her. She would breathe too slow, then too fast, and had a hard time regulating herself at times. She just seemed, even from a fetal perspective - to march to her own beat.
My view at times is, "Maybe she is an old woman who is just pissed that the buffalo are gone. Maybe she woke up here and hates it." If this were true, and I had lived life long ago, I might be pissed off too.
But when I was pregnant, the prognosis seemingly bleak, I prayed that she would do something great for her people. She has taught us so much already, she has already done so much, so great.
When I read your article it really hit home for me. Our family is Cherokee, and we have two autistic sons. Both of my boys recently joined the NATIVES program, as we do not live with the tribe in Oklahoma. I have always felt my oldest son is an old soul, and even through his autism you can see an elder peeking out at you saying “be still, don’t worry, it is ok”. What is hard for me is that my boys are expected to understand the many social rules of our culture regardless of their autism. The last gathering we went to my eldest was taken to task for not responding to an elder, when it was explained that he was autistic their response was “it does not matter, he has been told twice”. You can imagine how angry we were, my wife was in tears, and she never cries. We thought in all the places of the world our boys would find acceptance, and just treatment among other Native Americans. I was taught that our children are blessings, and protected, not to mention the ones with disabilities. I guess that is not the case these days, at least not where we live. I pray your little one is cherished by her community as she should be, and that you never experience what we have.
ReplyDeleteI have empathy and understanding for your situation. There are certain cultural "no-no's" that both my younger girls have trouble with, and the only one that my child with autism may never grasp is that she is not to interrupt two older people talking.
DeleteI'm sorry for your experience. This is really where awareness makes a difference in a community. But sadly, unless a person actually has a child with autism in his/her close-knit family, they may never know what it is to constantly sacrifice any "normal life" for the life that changes drastically after a child is diagnosed with autism.
You are right, our cultures should adapt and grow to support the special needs of our smallest Tribally-connected children in our traditional settings.
I'm autistic myself though, I have Asperger Syndrome therefore I'm glad you have learned compassion about such
ReplyDeleteAdam
Thank you for reading my blog, Adam.
DeleteI just came from my son's IEP meeting and came across your blog. This discussion is so relevant for our Native communities today. My son was diagnosed when he was three and as a "full-blood" (arbitrary measure of Native'ness if you ask me, but that in itself is a separate conversation...) Northern Cheyenne we are running into some differences in opinion at his off reservation school regarding culturally competent curricula that combines the "two-worlds." Hopefully in the future more research/scholarly journal articles can discuss how we can somehow meet in the middle regarding educating our ASD kids and keeping our traditional ways close. If not, research has indicated through forced assimilation tactics used in early education efforts involving Native Americans (boarding school era) what can occur that can damage and wound the spirit of children who are not allowed to embrace their Native culture and instead adopt the dominant cultures values/morals/traditions while "divorcing their own."
ReplyDeleteLynne
My mom told me that the Creator had plans for us and matched our kids with us long ago. Why, because he knew we could handle it! We to used to call my son and old soul also! He is our Little Old Man! His little mannerisms sometimes make me wonder how our old ancestors would have called him or what Indian Name they would bless him with. I asked my mom and she said a long time ago there used to be "contraries" that were two spirits and are highly regarded and a vital part of the tribe. Which Hollywood famously made a farce of this in "Little Big Man," you know that one starring Dustin Hoffman?.....Anyway everything that character did in the movie was backwards, he rode his horse and faced the back instead of getting on and riding and facing forward. Makes you wonder how our kid's diagnosis can be interpreted in many ways.
Take Care and thanks for starting the blog its a great way to facilitate and get the conversation going and embrace change!
Wicada
I am not native by blood that I can confirm anyway although my grandmother definitely looked native. Anyway, my son is autistic and I have long wondered what perspective native culture has taken on mental disabilities, but I have found little on the subject...
ReplyDeleteI came upon this post because I am doing a research if Native Americans have autism in their communities, and if so, have any of those with autism been vaccinated in their early years?
ReplyDeleteMy daughter was vaccinated; but we were in an urban area at the time. She was given a combination vaccination of 4 at once that I believe triggered her autism at 6 weeks old.
DeleteLynne...I came across this blog post when I researched whether Native Americans used a special word or name for a child with autism. I'm the author of a middle grade/tween mystery series and the novel may have an adult displaying autistic behaviours. If there is such a word, I would like to incorporate it. The book is set in the Black Hills. I notice you have responded recently to posts here so I'm hopefully you'll notice mine. Thank you so much for any light you can shed on this.
ReplyDeleteHi there! I just happened across this blog post today as I was researching Native people and Autism/Down Syndrome. My daughter has the dual diagnosis and is 13. I was so excited when I saw that your daughter also was dually diagnosed. Supposedly we have Native ancestry on my Mother's side, so the story goes for the last 150 years or so, but can't prove it.
ReplyDeleteAnyway, I became a nutritional therapy consultant because I wanted to help special needs children, especially those with either diagnosis. And I have a special place in my heart for our indigenous peoples. I really think that toxins combined with a genetic predisposition is to blame for the amount of both disabilities. However our kids are just so amazing and wonderful! I would love to one day be able to work with kiddos from the Nations to help them regain their health and vitality....one day. But for now, it is so good to find another kindred spirit mom out there. Thank you for this blog!