Many times I have parents vent to me about having moments of anger, frustration, sadness, jealousy and so on about their child, or in some cases children having Autism. I always tell them this....
"It's OK! Let it out! What you're feeling is completely normal given the circumstances of this hand we have been dealt. Having a child with Autism is rough, and those that live it know. It's OK to be angry at times, it's OK to be sad or get in a funk, its OK to cry. It's OK to feel a little bit of jealousy when you see parents of neuro-typical children. But it's important to not dwell there, and letting yourself feel these emotions as they come and letting them out is a healthy release. "
I never realized that I wasn't taking my own advice. My family and friends and those that know me through my FB page "Autism Mommies" or from my support group in my community know that I have always been optimistic about Madasun having Autism and that I always focus on the beauty and joy she brings to our lives. I was immediately accepting of her having Autism and focused on the "how's" not the "why's". I threw myself into research, awareness, and keeping busy that I never really stopped and gave myself a chance to be upset. about my daughter having Autism
I was told by numerous doctors had told me " You need to grieve the loss of the child you thought you had, the hopes, the dreams you had for her, because they are gone " and...
"If she isn't talking yet, or by 4-5 years of age she never will. She will never be in a normal class, write, count, learn..."
2. What the fuck? Mourn and grieve the loss of the child I "thought" I had!? And the hopes and dreams I had for her!!?? NO! Sorry but NO!!! She is the same child she always has been.
Her Autism isn't what makes her HER, SHE does that. Autism is something she has. And my hopes and dreams for her well my main ones are for her to find joy and happiness in life and that at the end of the day those are the three that are most important, her having Autism does not change that. The others such as picturing tea parties, and "mommy can we paint our nails" , family trips, school plays, dance classes, softball, soccer, Saturday swim meets, Friday night movie theater night like I had growing up, first dates, homecoming, prom, graduating high school, going off to college, finding something she loves and being successful, traveling, falling in love, becoming a mother if she wanted, and so on. Typical stuff I think most parents Invision when their child is born.
I have accepted the fact that a very different road will be traveled to any of those things. That many challenges lie ahead and battles are fought day to day. But not impossible. I have hope that Madasun will one day overcome her Autism, I am also realistic and know that there is the possibility that she may never but I don't entertain the "Nevers" or "cants" of the world. I will fight for her and fight to free her and her voice until my last dying breath.
But I never allowed myself to be devastated by the words "your child has Autism." Because I kept my self from that. I'm a writer, and thinker. Not so much a talker. This is my therapy. I felt ashamed for being heartbroken. I needed to take the advice I had given so many times to the parents that come to me. Because Autism is rough, especially when you are where we are, non verbal, low end of the spectrum. I in no way think my daughter is less, or is low functioning I think she has a brilliant mind and an even more amazing heart and soul but her Autism locks her up and it causes her pain, I see it in her eyes when she's watching others and wanting to do something and trying but not being able to control her body, I see the frustration and the sadness that causes her and I would take that away if I could. I would sell my soul to the devil if it meant I could free her from those struggles and that pain. I am no longer going to feel ashamed for saying that because I love my daughter NOT her Autism. Her Autism causes her pain that I see every day and how could I as a mother love something that does that to my child. Autism is not what makes her the sweet, genuine, kind, funny girl who loves camping, swimming and star gazing. Autism isn't what makes her a loving, compassionate girl who doesn't judge others or bully any one, that is HER and I know in my heart she would still be like that if she didn't have Autism.
Right now Madasun is 6, she has been non verbal all her life. When her 4th and 5th birthdays came and went the echoes of those doctors haunted me at night...a few days after her 5th birthday she said her first clear, true word. 4 months after that 5th birthday she wrote her name for the first time. Tears of joy streamed down my face at I looked at that piece of paper. It fueled me. My hope take was running on fumes and she was like here mom let me fill her up for ya!
She has shown me time and time again "hey mom I'm in here" she knows a lot about astronomy and shows me by pointing to pictures in her astronomy books as I asked questions, heck she dialed in a telescope for the first time at 2 years old. She is a serious thinker, she's very meticulous with things too. She is silly, she laughs...a lot. She loves the water, we are in Arizona we live in the land of 120 degree summers right along a river and during those hot days I see her at her most joyous self. No meltdowns, no stimms, she's a normal kid(extraordinary kid) just splashing, running and giggling with her little sister and their friends. Pulling mom out and making me do piggy back rides through the water, spinning and tossing her as she laughs and laughs...in moments like these all those doctors, ignorant by standers, meltdowns, sensory issues, therapy, pain of her not speaking all of that is GONE. In those moments I'm in her world and she is in mine and that is what its all about.
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