Today is World Autism Day.
Oddly enough, I have very little to say on days like these. Maybe I feel the pressure to be super profound or enlightening and just crack under it. I am, after all, a seasoned vet in the world of Autism. I just don't know what I can say or do to help raise awareness, educate, or inform outside of living my life out loud here on this blog.
For my family, one day or one month of "Autism Awareness" is really just a grain of sand on the beach. It doesn't stand out for me any more or less than any other day. When you live it for almost 18 years it is who you are and a day devoted to that awareness scarcely registers on my radar in all honesty. Not that I'm trying to diminish the day or feel that it is insignificant - not in the least. I guess I'm just glad there are others out there much more inclined and vocal about the day and all its meaning. I will leave it to them.
What is interesting is that there are two levels of awareness-raising that can occur. Of course, there is what we can do to raise awareness in the general public - those whose lives have not been touched by Autism. There is also a different kind of awareness-raising that occurs within the Autism community. It is families reaching out to families, parents connecting with other parents. What has inspired me most on my journey are other parents like me. I don't mean other parents of kids diagnosed with Autism. I mean other parents really like me. Living it perfectly imperfect and always keeping it real. Parents of teens and young adults - the forgotten group in the big wide world of Autism (yes, shockingly, all these little kids on the spectrum actually grow up!!) These are the people who have opened my eyes and given me new perspectives.
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6 comments:
My feelings exactly -- about all of it. And I love that photo -- CB's eyes are so remarkable.
I know how you feel. I'm still raising my almost 21 year old son who sounds exactly like your daughter to a t, except he is 6'1 and 220 pounds. I do everything I can to keep him calm, and raise 4 of my grand children who are all around the age of your beautiful daughters. My 2 year old grand daughter was just recently diagnosed with autism.
It's hard to see people celebrate it like its new when I've lived with autism for too long. I fell out of the autism awareness ordeal years ago and never really paid much attention to any walks or special days until my grand daughter started showing more and more symptoms, now it's like I'm all in it again. I attend events and bring her and my son who I never realized enjoyed all the joy surrounded by the newfound awareness people are trying to spread. There was an event at the place my grand baby goes to, they were celebrating world autism awareness day. Years ago I would never think twice about it even if somebody mentioned it to me. I decided to bring them both to see how it would go. To my surprise they welcomed my adult son and included him in all the activities along with my other grand children, I watched them all enjoy the couple hours we were there. My son had the biggest smile it melted my heart.
It opened my eyes a little bit more about how the newly diagnosed or parents of young children may feel with autism and how their accepting and viewing it a bit different then us seasoned parents ;). First time in 20 years I lit our porch blue and my other grandchildren loved being involved, my one grandson whom is 9 specifically asked to wear blue in honor of his uncle and sister. It touched my heart. I look at my sons autism a bit different now, I'm more accepting of how he is rather then seeing of what autism did to him. I love your blogs. Very refreshing to read about a family in a similar situation. My older son who is in the military told me about blogs with older children with disabilities and I stumbled upon yours. I felt alone for so many years and its good to know their are others like me still raising their grown up children. God bless. CB is stunning by the way, all of your children, absolutely beautiful!
Sue
Sue, I am so deeply touched by your personal story of raising your son and now your grandchildren. My in-laws raise ONE of their grandchildren who has no disabilities at all, so I am in awe of you in raising all four especially with one who is on the spectrum. The blessing is that you have been through it once before so she has the benefit of all your experience :)! What a unique experience to have an older son living with Autism and now a newly diagnosed two year old. YOU should have a blog!!!
It must be so different this "second time around" with your granddaughter. I know so much has changed in the world of Autism just in the 16 years since my daughter has been diagnosed - more support, more awareness, more services, improved attitudes and acceptance by and in the community, more understanding. There are blogs, facebook, more books and resources - more ways to connect with others. I know I didn't have any of that back in the 1990s.
I love the point you made about how helpful Autism Awareness month and the "Light it Up Blue" day can be for newly diagnosed parents and caregivers. I agree completely. I'm glad you went out to that event and felt the healing power of it. I so happy you shared your story here and hope you share your experiences as often as you wish!!
Many blessings to you and your family :)
Alicia
Alicia, thank you so much for your help in getting the word out about my book. I read your response to Sue and my eyes locked on the phrase "16 years" since CB's diagnosis, and it hit me that it's been that long with Nigel as well (two months from the "anniversary"). I feel like being an autism parent is in the fiber of my being, every cell. Fortunately there is some solidarity in that, and I'm so thankful that in recent years we've had the internet and been able to connect with each other. Big hugs to you, and thanks again!
@Tanya - You are very welcome! Your book and blog are amazing and I was thrilled to share it with everyone. Anytime I can help you with anything, please never hesitate :)! I am a FAN!!
Awww you sould get CB a onesie. i bet she'd look so cute! Does she already own one? x
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