Wednesday, November 19, 2008

Scarlet A for Autism

As I sat at the peditrician's waiting area, I saw a mother enter, her arms overflowing with a large child. She was probably about seven, my own daughter's age. By her posture and gestures you could immediately see she was severely handicapped. In an instant, I felt much remorse for the mother. Then, as she sat in the seat directly across from me, I saw an amazing interaction. With her warm gentle and strong hands, she embraced her daughter's face and they were nose to nose, giggling and playfully whispering to one another. I saw watched the daughter's face light up with pure bliss.

I wanted to stare in amazement at them. For in that moment I realized how immature and selfish I was. My daughter is seven and I am still in the early phases of acceptance. Accepting my daughter for who she is and where she is on the autism spectrum has been one of the most challenging endeavors I have experienced. Judge me all you want, I am just being honest. You see, autism affects her emotions and behaviors in a way that are socially unacceptable. It's like that saying goes, "Love the sinner, hate the sin." I love my daughter! I hate her behaviors. I have to learn to accept some of the behaviors some of the time. But that is always difficult. I haven't figured that part of the puzzle out yet. I think I am doing a pretty good job at it, maintaining my cool and taking it one day at a time. And as I gaze across the waiting room, I see that mother who has a child with so much need. Yet she is accepting and patient and full of grace and love for her child. I on the other hand am helpless and clueless most of the time, such a klutz about motherhood!

My daughter is able to keep it together most of the time. On most days she is a walking talking Hannah Montana. But, there are days and moments when she struggles and - uh oh - what just happened?

It is on days like today when my husband and I see the clear deficits in her. With her penguin-like waddle, hands and fingers flexed tightly, her eyes squinting, baby talking or talking like an otter or dinosaur, she tries so hard to "fit in" to her surroundings. I am not sure why today she was acting like this. Did something happen at school? I wonder, never knowing. And when she behaves like this, it is so opposite to her typical posture and behavior that sometimes I think she does this for attention. Then, this evening at 6:00 p.m., she had a hair appointment. Here is how that event happened:

5:50 Time to get shoes on and get in van to go to hair salon. Instead, Sienna gets in van barefoot, shoes in arm.
5:58 1-2-3 Magic WORKS miraculously and she puts shoes on and whines and fusses as we walk into the salon.
6:00 Sienna crawls under seats in waiting area. I hang coat up and try to over compensate for my daughter's behavior by smiling until my face hurt.
6:05 Hair dresser is looking and waiting. I write a note that reads: Daughter on autism spectrum. needs a few minutes to adjust. thanks.
6:10 Realizing that hair dresser will be needing to go home after this appointment, I firmly tell Sienna to stand up. I lift her up to her feet and push her feet forward, one foot at a time like they did on Weekend at Bernie's.
6:15 Lift Sienna onto salon chair and she screeches in terror when she sees that there is a booster seat. She refuses to sit in and tries to climb over the back of the salon chair. I quickly remove the booster seat and firmly place her down onto the salon seat.
6:20 Stylist offers her to choose which cape she wanted, Zebra or Purple Silk? Daughter, with chin forced downward, eyes rolled to her eyelids grunts at her. I am appalled. I want to apologize, pick her up like a baby and leave. But, we needed her to have her hair cut and we have made this appointment weeks ago. She pulls the cape from her neck, shakes it out and wraps it around her body tightly.
By 6:40 we were done. WHEW!!! I paid the hair dresser $12 for the haircut and added a $5 tip, although I felt like she earned more like a $50 tip!

After my daughter got home and went to bed, I was telling my husband all about the experience at the hair dressers along with what I witnessed from the pediatrician's office.

Why is it so hard being a mom to a high functioning daughter on the spectrum? I should be so thankful that she does so well most of the time. Why am I still struggling to accept my daughter's behavior?

I feel like I wear the Scarlet A on my chest. A for autism. I am so judged by others in this small town we just moved to. Other mothers don't want to be friends with me let alone have their children be friends with my daughter. The schools don't want to accept my daughter's deficits as a special need, instead they blame my parenting. Even our own family members judge our parenting and think we spoil our children and "if only we would let them play out side and exercise more..." some say to our faces!

Whenever I see parents with children in wheelchairs, I feel instant sadness for them. I would never judge them in fact I think of them as saints. I think about their inconveniences in their lives and how much they have lost because their children are so different. And then today, when I saw the beautiful laughter come from the mother and daughter at the pediatrician's office, I realize that they have learned to deal with their loss and have chosen to accept all of the beauty. I am trying to do this with our circumstance. Still new at it. But I want that special bond with my daughters. I am going to have to work hard at it.

I bear this scarlet A on my chest. My name starts with the letter A and I like the color red. So there! I will just have to look at life differently. If you don't like me because of this A, then you don't get the privilege of knowing how mysterious and wonderful life on the spectrum is for our family!


lynnmosher said...

Oh, Angela, my heart aches for you. I know you will work through this and come out on top of it. I know God is with you and will help you to learn and understand how to handle your daughter's days of off behavior. I'm sorry that others are shunning you. I'll be praying that they change their minds. I know you will find someone who will understand.

Is there a group for parents of autistic children? If not, do you need to start one? Is there one in a town close-by? If not, try finding some online help. I'm sure there is a forum or site on the internet for help and encouragement.

God is your strength. I know He has some help out there for you. Will be praying. Blessings...Lynn

Araldia said...

Sometimes I am glad that I am Aspergers, and therefore did not recognise any issues with my children's behaviour, even post diagnosis.

They are who they are to me, OK, to the outside world they do things that are considered odd, but I do not care.

I want my children (ADHD, AS, ?AS) to realise that however 'normal' someone is, there will always be someone else that thinks they are weird. I want them to know that even if they wear wellies and a pirate hat to school, they are allowed to be them.

Creative expression, strange behaviours, things that are not 'neurotypical' are part of the wide tapestry of life that makes us all unique, and allows us to take stock of the world and accept our own foibles.

When my AS son used to scream and scream, instead of getting frustrated, I used to repeat to myself 'He is saying mum, I love you, I need you, you make me feel secure, I panic without you'.

Acceptance of any change is a challenge, one that may take time, but is worth it. Your daughters beautiful smile, the way she does small things, you would miss all these things if she was anything other than herself :)

Have you joined foggyrock etc? You should be able to find more people with insight to talk with, wish you all the best.

Carol said...

This gives me a little more insight into what life is like for my sister whose son (3y/o) was diagnosed with autism this past April.

Thank you for sharing your heart. You have blessed me.

Tammy Warren said...

Oh me...I am so sad to hear this. One minute I read about your progress on your diet and then this. I know this must hurt.

Please hang in there.

lonestar said...

(((hugs))) people who judge have no idea how hurtful it is... we have dealt with that too, but at least with the exception of church and family get-togethers, we don't typically run into the same people over and over. Honestly, judging a parent for the autism-related behaviors of their child is no different that judging the parent of a child who can't walk and telling them if they just did this or that, their child would walk just fine. No one would dream of being judgmental about that, but they don't think twice about judging autistic children and their parents. I suppose it's because there is no outward physical difference to clue people in, and I know it's not something most people can readily relate to, but you know what, people need to learn to give families the benefit of the doubt! Ok, I'm off my soapbox for now...

Talking about these experiences and reaching out to others who are going through the same things has been so helpful for me since our boys were dx'd, I hope it's helpful for you too. Hang in there!

Elizabeth Channel said...

Why is it so hard being a mom to a high functioning son or daughter on the spectrum?

Great question. Great post.

I know how you feel. I've had that same doctor's appointment scenario time and time before, and each time I leave it, I can see where God was showing me such a different perspective on things, and I am so thankful for my quirky life.

Yet I forget that so quickly when the tantrums begin. I think it's the unexpected nature of a high-functioning, gifted child. They are so all over the place that you never know what you will get with any particular outing or scenario. You might get genius darling, or you might get screaming raver.

It's a tough place to live some days. But you and I are both learning to embrace the wonder of it all...and that is only by the grace of God.

Truly it is a mysterious and wonderful life...