I wrote this a few years ago and while my daughter has made progress in some of these areas, they are replaced by others now because as special needs parents we know it is an ongoing roller coaster. . . . .
As a special needs parent I admit that I often feel sorry for both myself and my daughter.
I feel sorry for myself when I am up with her for hours in the night because she can’t regulate herself enough to sleep. I feel sorry for myself when I have to sing 15 different songs just to get her attention for a split second so I can take a picture that you can see her gorgeous blue eyes in. When she melts down worse than other kids her age and I can’t explain things to her like “Its ok we will be back at the park tomorrow.” I feel bad when I have to fight the school district during IEP meetings to get services that are detrimental to my daughter’s development and I have to be the bad cop against professionals. The looks I get at the park from other moms when my daughter runs around flapping her hands and babbling like a baby or paces the fence back and forth, or I have to tell her not to lick the slide, I feel bad for myself then. When I feel that I can’t connect with her everyday like I would like in pretend play or games, it hurts. When I think about the future and the things that we as mother and daughter probably won’t experience such as getting a drivers license, going to proms, her wedding or having children of her own and I often cry and worry what she will do in this big scary world when I am not around to navigate it for her.
I feel bad for my daughter when another little girl comes up to her to innocently talk about the kitty on her shirt but to my Hailey it feels as if she is coming in for the attack. I feel bad when I can’t let go of her hand at an unfenced pumpkin patch because she will wander and not listen when I call her name like other children. I feel bad for her that the world seems so scary and uncertain and that the sun is harshly bright for her. I feel bad that she has thoughts trapped in her head that she just can’t get out and brilliant ideas of her own that will never be heard. When she seems hungry but she refuses to eat anything that is not crunchy and salty or baby food. I feel bad for her when I drop her off in a new class and can’t explain to her that she is safe and that mommy will be back. Instead she spends 2 ½ hours feeling alone and scared.
Life as an Autistic child and as the parent of one are probably some of the hardest things to be dealt in life. The lack of awareness and support is another heart breaking reality.
At the end of the day when I watch her sleep so innocently I feel blessed. When her world finally makes sense, when we have survived whatever came her way that day and handled it as a team.. . . It is then that I finally relax and realize the people I should really feel bad for are the parents of typical developing kids (I know sounds crazy). While their day to day lives might be easier (which they will hate me saying, but hey its true), they also will never get to experience the things I do. The depth of my love and understanding and purpose for being on this earth I believe is much stronger than if I had a typically developing child. Of course all parents are close to their children. But the closeness that a truly intune mom has with her special needs child is like no other. I know her inside and out. Her needs and wants that she can’t even express.
And the little things she does that seem like HUGE things. I don’t have to wait for a report card with straight A’s or a baseball trophy to feel like I am on top of the world and the proudest parent alive. I get to see huge amazing accomplishments in her every day because ,life, in general, doesn’t come easy for her. When she can communicate a need for the first time or when she makes eye contact or says hello to a stranger. When she plays next to another child without fear, or tries to sing along to a song. When she laughs and finds joy in a new song or activity that before was hard for her. There is something we get to celebrate everyday because she is adapting to living in a world that is not like the world in her head. She is amazing and adaptable. She is my hero and I got to give birth to her. How lucky am I?