A little bit more..

This is the whole truth. And I need you to know it.

I have never written a lie. I have always told the truth. But I have made a mistake. I got too caught up in trying to be politically correct in regards to the Autism Community (and their feelings) that I lost a bit of our story in the process. Although there are many, many great aspects to Autism (and my daughter), and although there are many, many wonderful moments there are also, without a doubt, many moments of uncertainty (Am I really giving my daughter all she deserves? Am I meeting her needs?), despair (Will people ever learn compassion and understanding? Will the rest of the world ever show my daughter the respect she deserves and is entitled to?), and hardship (Will Mia ever have real friends outside of the family? Will she ever be included for who she is?).

I held a bit of what Autism really means to Mia back because I was too afraid of offending those I long to stand with. I was too afraid of rejection from a group I want to help. I was afraid of telling too much of the “bad” and not getting across any of the “good”. I was afraid if I talked too much about the hardships my daughter faces then those out there in the virtual world reading my words may continue to walk around with pity in their hearts for my daughter and all of those like her. And I couldn’t be the cause of one more look of pity directed at anyone in the Autism Community. I just didn’t want to cause anymore hurt to the image of Autism by writing too extensively about (what I view) to be the “challenging” aspects of it. I didn’t want to lose the greatest allies I have ever had – the Autistic people themselves. I didn’t want to alienate them. I just didn’t want to lose those who have come the closest to helping me unlock the mysteries of my daughter. So, I omitted the unpleasant from my dialogue.

 

But this is my story. This is Mia’s story. This is OUR life. And it should be written truthfully – without exception.  It’s time I insert it. It’s time I tell you a little bit more of what life with Autism is like for Mia (and me.) 

(A thoughtful Mia. 2013)

(A thoughtful Mia. 2013)

 

My daughter’s life can be difficult. There is no way around that. As she grows it may get harder. As she grows she will move farther away from her peers. As children, as six year olds, they all enjoy playing on playscapes and imaging worlds – something Mia herself enjoys doing. And so there is some interaction. But eventually her difficulties with verbal communication and social struggles will create a gap too wide for most teenagers to bridge, some won’t care to, others won’t know how, and if she is lucky, maybe one will. I live with this knowledge; it’s ever present. 

Even now, most days, Mia is left to watch the hoards of children happily playing in our shared backyard; regulated to the sidelines with rarely ever a friendly glance thrown in her direction. Now that she is no longer new and strange they no longer care to look. So, I am her backyard friend. Roger and I are the ones who participate in her imaginary worlds. Roger and I are the ones who can understand her sometimes inaudible speech. I must sleep with this at night. I must sleep knowing I am one of my daughter’s only friends. But worse, she has to sleep wondering where her friends are.

Then there is her body. She has a body that does not listen. No matter how much she would like to speak, she cannot always do this. Her voice is trapped within her brain. You see, Mia understands and knows everything that is said to her. She wants to reply. But her body and her brain will not allow her too. No matter how hard she tries sometimes speech still eludes her. I must live knowing that my child wants to communicate, but has yet to find a solid way. But worse, she must live with the frustration of wanting to tell the world things she just cannot say.

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(Roger and Mia looking at a Penguin together at Mystic Aquarium. Yesterday.)

Her brain doesn’t only interrupt her ability to speak whenever it wishes. It also sends mixed messages to her sensory system. Telling her to hear colors or taste smells. Telling her ears that some quiet noises are loud and some loud noises are quiet. Telling her sensory system it can’t focus and process anymore than one sense at a time. Telling her that when she walks into a room she must process each sense individually – and each sound one at a time. But this doesn’t only happen when entering new territory. All day her brain is sending her mixed signals that she must work out as best she can. And so, Mia has created her own type of filtering system. She can often be found implementing this by closing her eyes (one or both), covering her ears, or nose. All of which are done in an attempt to censor her body from taking in too much at once.

Oh, but it doesn’t stop there. Mia has bad balance. She has a hard time with spatial awareness (due to distorted body schema stemming from her sensory processing disorder). She has a hard time smoothly manipulating her body through space because she has a hard time knowing where her arms are in relation to her trunk. Mia typically runs places rather than walking swiftly through an area. Her lack of body awareness also affects her threshold for pain. Hers is incredibly high – which may sound like a wonderful attribute but I assure you, at least for me, it is not. It fills me with fear daily. What if something is wrong and she doesn’t feel it? What if she breaks a bone and doesn’t notice? What if… I must live with the constant what ifs. And Mia must live trying her best to walk surely in our world while often tripping.

Mia’s sensory processing disorder also aggravates her internal clock making a sleep schedule virtually impossible. Mia can easily awake at 4 am after only five hours of sleep and continue with her day normally, not retiring again until the very late hours of the evening – around 11 pm. Any coaxing of sleep on our part is met with quick resistance. It is our desire not to drug our child, and all the natural alternatives had adverse side effects on her (causing all day drowsiness and a zombified Mia.). On the surface she may seem to function fine without sleep but I understand how important sleep is for one’s well being and a growing child needs lots of it. (As do their parents!) I must be content to live my life with only a series of cat naps. While Mia must live in hers with very little rejuvenating sleep.  

(Mia, happy as a clam, in the sensory pit put together at Mystic Aquarium for Autism Day. Yesterday.)

(Mia, happy as a clam, in the sensory pit put together at Mystic Aquarium for Autism Day. Yesterday.)

But worse of all are the days in which my beautiful child seems pensive and sad, holed up in her body and stuck in a world I am not allowed to enter, nor even permitted to fully understand. Worse are the times that I am frustrated with her actions, and I am tired, and I lash out at those I love. Worse are the days of despair when I don’t know how to help her. Worse are the days that my child pushes me away because she just can’t be close. But worse still is the feeling I have inside by betraying these truths; as if by speaking these very words I am somehow allowing the myth of inadequacy to perpetuate. Worse of all these things though are the feelings Mia must have on the days when she can’t even be coaxed outside.

(Mia and I - she is preparing herself for the inevitable forced flash of my camera by squinting one eye. Yesterday.)

(Mia and I – she is preparing herself for the inevitable forced flash of my camera by squinting one eye. Yesterday.)

5 thoughts on “A little bit more..

  1. Spoken truth can only hurt the ones unable to care.I know how hard you both work to make Mia’s life joyful.That is the truth and keep up the honesty……….Love Mom

  2. Kim,
    Your ability to share these thoughts/your truths makes you a braver woman than I will ever be. I never imagined how challenging motherhood would be. I am surprised every day by the challenges -still. Please keep writing and telling the truth. Let love rule!

  3. I am really happy for you that you are able to talk about the truth , with the truth comes understanding which is so important . Keep the truth coming , the ups and downs , it’s how it is !!! Lv Pam

  4. Kim thank you so much! Painting a nice picture is something your mom and I new very well and did for the same resions you did only difrent. However it doesn’t help you,Mia or anyone get the answers or understanding we all need it only perlongs them.
    The fact that you are willing to open up your life to help others shows how much you care.

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