I was going to post this as a comment on a blog (to a specific entry) that I read with increasing regularity, but thought it would serve a better purpose as an entry in my own blog so that I could expand on it. I’m selfish like that.
As a mother to a daughter who happens to have Autism, my greatest hope is to teach her life skills, coping skills, and self-advocacy skills. My proudest days are when she can use language productively to tell me what she enjoys and wants and needs, because spoken language is so difficult for her. In spite of her difficulties I want her to grow up confident in her strengths and abilities. I want her to focus on what she CAN do and take time to figure things out on the social situations that she has to follow through with. Like it or not, she’s different and she does have to live in a world where the majority of people aren’t like her.
That doesn’t mean I want her to change. I want the core of her, what makes her GRACIE, to remain. I know that in our case, ASD is a major part of that. So my job as her mother is to give her tools to give her options in expanding her opportunities and not to change her. I never want her to hate who she is or her ASD or her other related quirks and disorders.
As I say that I’m highly aware every day we’re lucky that friends and family view my darling, beautiful girl the same way. I’m also highly aware how lucky we are and she is that she’s high functioning, as difficult as life can be for her (and yes, for those she lives with). Our Autism is not the same as someone else’s profound Autism. When I speak about this, it’s about our experiences. It’s about hoping to make sure she can live the best and most enjoyable life possible.
As a for instance:
We had a very difficult morning this morning. It reminded me of our very early days before therapy… before removing lactose, high fructose corn syrup, artificial food dyes, and most processed crap from her diet. She’s been having a very sensory-difficult month or so and we’ve been needing to increase her sensory input in her daily sensory diet. I’ll post more at a later time on that because we’ve been seeing good results from these changes. But today in particular has been extremely hard for her.
She woke up agitated and highly anxious, and it didn’t help matters that her younger sister wasn’t picking up on the signs. This led to Gracie shutting down communication with her sister although to give her props, Gracie was coming to me to tell me how distressed she was. Unfortunately she wasn’t able to carry out my gentle suggestions for handling what will now forever be referred to as The Wii Incident With Anna. Instead, she got more and more agitated, more and more distressed, and her ability to self-advocate plummeted. Her composure rapidly deteriorated.
I had to think fast and tried to body brush her, but she lashed out and screamed. She was hyper-sensitive so that wasn’t going to work. I tried to hug her tight, like burrito hugs… wrapping her up like when she was a baby and swaddled to compress her but that didn’t work. I filled the bath tub with hot water and she lost her ability to use words coherently. Suddenly she was lashing out physically, punching, kicking, eyes wild, refusing to remove her clothes. She was hurling herself into a wall to try to avoid me, and as soothing as I was keeping my tone of voice, she heard it as a loud shriek. As gentle as I kept my hands on her, she felt it as a stinging burn.
She dropped to the ground and full force kicked me on the gut with both feet. She waved her hands and arms, waved her feet and legs in the air, gasping as I sat there trying to catch my breath.
She then caught enough breath to shout about how angry she was with Anna, who then came upstairs to see what was wrong. I explained about how her refusal to let Gracie play the Wii with her triggered the meltdown, and that Gracie needed to calm down but needed help now to do so. She then offered to apologize and get in the tub with her big sister. That only somewhat worked, but Gracie’s eyes did soften and accepted the apology.
I still had to get the girl into the tub. I had an idea: sprinkle the clothes with a few drops of water. Nothing you nor I would think was enough to change clothes over, but to her the entire outfit must come off. She was still livid, but it worked. I just had to firmly guide her to the tub instead of her underwear drawer.
As soon as she sat in the water, she calmed down. She even let me wash her hair. She calmed down enough to say, “I don’t want to be wet” big breath “but it feels good.” That was it. We got the bare bones wash, she was with her sister, and she got to “float” in hot water. I told her to tell me when she felt calm enough to ask for a towel and would let her choose one to step out. I gave her back some control and encouraged her to self-advocate through the rest of the situation, and her sister then apologized again on her own. I could see the tension melt away. She nodded and said, “I’m going to taste bath water. Nyah nyah nyah.” But she didn’t.
The rest of the day so far has been high tension, but not ear-bleeding, stomach wrenching, back-breaking, meltdowns. She’s been argumentative and insistent that she doesn’t want to go to school tomorrow, though. She did have two days home sick this past week and Monday will be her first day back, so that could account for some of this continued anxiety, but part of teaching her life skills is coping with this anxiety and having to do things that we don’t want or like to do.
So she calmed down moderately and I thanked her once she got dressed. I combed out her thick blonde hair but didn’t blow dry it because she nicely asked me not to. She said her ears were hurting. Self-advocacy.
We came downstairs and I gave her some of her safe chocolate since it helps boosts moods, and said “thank you.” I sat down with her after pouring my coffee and explained how what she did upstairs hurt me physically, and hurting me physically also hurt my feelings. She pouted, but remained quiet. I continued and explained that if and when she feels sorry it’s polite to apologize and one way to do that is to say the words “I’m sorry” or to offer a kiss or a hug. Then I apologized for hurting her feelings too. We go through this How To Apologize Routine frequently, so she knew the scripting I was going to say but the situation is always different.
I understood that the situation felt out of control to her, and her physical behavior was out of her control as well but after the fact she still needed to take accountability. I’m thankful it happened at home and not to a friend on a play date or at school on the playground. She was safe here. That also meant she was safe to apologize in her own time… which she actually did. It came in the form of a gentle hug and a soft kiss on the cheek! She doesn’t often hug or kiss because she intensely dislikes how they feel and they have to be on her terms. But she did it, and I knew they were her apology.
I thanked her and told her how proud I was, and asked if I could give her a “dry kiss on the cheek” in return. Even better, she let me. She sat with me and offered me some water. All was good in the house of Wessica again. Right now these two sisters are playing Tangled on the Wii together and they’re smiling and snuggling up. Anna is one of the only people she’ll allow to full on snuggle with her, tolerating her right on top her.
I’m proud of both of them. My amazing girls. My way of making her life better today was trying to help her recognize even in the middle of her traumatic (for all involved) meltdown that giving her some sensory therapy (which we’ve also been doing from her kit throughout the day like with her rice bucket and body brushing) would help her focus and calm down and feel better. She felt immediate results in spite of my having to force her, so she calmed down and allowed me to do what I knew she needed.
Tonight before bed time I’ll remind her that she needs extra body brushing and see if she needs another bath, and I’m hopeful that she’ll be calm enough to know that it’s going to help keep her anxiety low enough to sleep well.
It’s always a process. And don’t get me wrong, my writing isn’t indicative at all of how stressed I really am feeling right now. I just hoped that maybe this could be an insight somehow.
- Gracie’s Rules Part II (littlefallofrain.wordpress.com)
- Illness and Autism (littlefallofrain.wordpress.com)
- Food & Non-Food Motivation (littlefallofrain.wordpress.com)
- Where’s That “How To” Autism Manual? (littlefallofrain.wordpress.com)