Cross Over, Pull Through

 

Standing in the kitchen I feel another explosion of searing, incapacitating guilt crash in waves against my heart.  Sadie, our six year old autistic daughter, just bounded happily into the kitchen on the fourth day of school and proclaimed, “Mommy, now I can help other kids tie their shoes on the playground.” This should cause a parent to feel pride and happiness, yet I feel remorse.

Two months ago  Sadie and her twin brother, Tristan, turned six. I decided I would try to teach Tristan to tie his shoes. It’s about that time and would open up more options for finding footwear. I also decided at this time NOT to teach Sadie. I imagined the meltdowns when she couldn’t do it. I imagined her harassing me at the most inconvenient times to show her again. I feared frustration so great she threw shoes, possibly at people. I didn’t want to deal with that. I didn’t want to put her through that. I didn’t want to put myself through that. I told myself I would wait until she’s a little more mature.

Three times I showed Tristan how to tie his shoes. I didn’t see Sadie anywhere near us. That was intentional on my part. If she saw me she might want me to teach her. Three times Tristan and I went over, “Cross over, pull through.” He is the consummate perfectionist and became frustrated when he couldn’t do it. I simply told him, “Let’s give it a break and try again another day. It takes time.” He agreed.

Two days later Sadie walked into the living room. She beamed proudly, “My shoes are tied.”

“Who tied them?” I asked.

“I did. Cross over, pull through.” She left me standing there in a state of amazement.

It hurt that I doubted my child. It hurt that I failed as parent by forecasting her failure. I constantly try to serve as a buffer between Sadie and the world for my sanity and, as I tell myself, for Sadie. Sadie doesn’t want her world to be buffered, she wants it to be conquered. She does conquer her world. She did it when I thought she shouldn’t be in the school pageant. She conquered the pageant. She did it when I considered homeschooling her to cut down on the daily meltdowns from the demands of  kindergarten. She conquered kindergarten. She did it when I thought she couldn’t play soccer on a team. She conquered soccer. She did it when I though she wouldn’t know her phone number. After hearing it maybe one time, several months ago she was able to write it down for a friend. She conquered her phone number. She taught herself to tie shoes. She conquered her shoes. All of this with little help from me. These crusades of Sadie’s were not without their meltdowns or problems, however, they were not without their successes either.

While I was tying Tristan’s shoes for him the other day Sadie asked him, ”Why can’t you tie your own shoes?”

Tristan stated, “I can’t do it.”

Sadie’s rebuttal, “You need to practice more.”

I need to practice more. I need to practice not hindering my child. She’s a fighter. She may come out of a battle with some physical and psychological bumps and bruises, but she will eventually come out on top. She needs me to back her up, not wall her in. That is easier said than done though. I’m not certain how easily I can accomplish this, but I once heard a dynamic, vivacious, and autistic six year old say, “You need to practice more.”

 

DUM-DUMS

SMOTHER’s Day

Part of my appeal seems to be my ability to keep it real, not to mention my rhyming skill. Ha. I don’t like Mother’s Day. All it takes is a quick scan of Facebook to leave me sighing and turning my phone off.

My mom died. I’ve had eight Mother’s Days without her. Sometimes it bothers me more and sometimes it bothers me less. This year it was more. This year her grave bothered me. I haven’t been to it in about seven years and that typically doesn’t bother me. She’s not there. Her spirit lives on in me and my family and her soul lives on in Heaven. She never wanted nor intended for me to be tethered to a piece of ground. This year the thought of that area of grass, forever hers marked by marble and a name plate, under a beautiful blue sky and perfect weather with an empty flower pot BOTHERED me to the core of my soul.

I’m convinced Mother’s Day is for those whose children have moved out. Those who can have their children over for a few hours and send them on their way as the deadbolt slides into place as the kids are on the porch. To put my view point in perspective, it has been the week, month, year, or possibly the lifetime that inspired the book, Divine Comedy. For those not familiar with Dante Alighieri’s 14th-century epic allegorical poem, Divine Comedy, represents the journey of the soul to God and the nine circles of suffering one must go through to get there. I seem to keep circling the drain in all of the nine circles. Just circling the drain of the “inferno” with my floaties, inner tube, and a snorkel.

I love my kids. I do. I’m also tired. There is so much behind the scenes parenting that goes on. The kind of parenting that doesn’t make for good social media selfies. Writing six page letters to the school system to fight for our autistic daughter to get an IEP, just to finally get it and have to miss the meeting because the baby spikes a fever and has another ear infection. So I have to call the school, rush him to the doctor, and realize I might not be home in time for the kids to get off the bus. During the doctor visit it painfully comes to my attention that the puppy’s (50 pound Great Pyrenees) favorite hobby of chewing on my bra has now led to a severed underwire poking me in the most inopportune of places. That’s a special circle of Hell right there.  Driving home in a state of panic I get home 1 minute prior to the kids. As they walk in the door one of them starts crying because she had to miss drama practice to come home on the bus in case I wasn’t there yet. That conversation didn’t go over so well. I wasn’t pleased with that attitude.

Milk man (AKA Husband and all 4 baby’s daddy) goes to pick up the medicine I couldn’t get on the way home. During this time I am trying to fix dinner while discovering I am missing a few ingredients. Whatever, no big deal. Almost out of nowhere a storm comes through. It knocks the power out, then on, then out, then on, then out…..It became a game for the twins saying, “It’ll turn off in one minute. Haha. It turned off. It’ll come back on in 1 minute.” Until it didn’t turn back on.  Milk man was gone for a very long time due to this storm and he forgot his phone. I couldn’t make sure he and the oldest child were okay.  Fast forward a little while and I sat on the cold bathroom floor crying in the stuffy house without air circulating and hugging a picture of my mom. Two things I rarely do. It was only in this past year I put a picture of my mom in my house.

On Mother’s Day this year I didn’t want to be a mom for one day. I wanted a break. I didn’t want to go to the school with a sick baby during the baby’s nap time to sit in a hot gym for 10 minutes while the kids ate a doughnut.  I did it anyway. I didn’t want to wake up at 6:30 am to eat the breakfast the kids cooked me when I was up until 1:30 am doing the baby’s breathing treatments, I did it anyway. They did a really cute dance show for me which included Sadie dancing to, “Love Yourself” by Justin Beiber. Okay, she didn’t exactly dance. All I can say is that child has a very lucrative career….in the stripping industry. Maybe I watched Magic Mike around her at some point. Tristan danced to Flo Rida’s, “My House” and Kasey, who organized the whole show, did a  hilariously cute dance to this song.

I felt SMOTHERED. I felt guilty for feeling smothered. The kids love me, Milk man went out of his way to try to make it a great weekend, and all I wanted was not to be a mom for a day. Then I realized I shouldn’t feel guilty. I’m only human and I suspect I’m not the only Mom who felt this way. I grateful though, to my husband, kids, and the bra chewing beast for loving me on days I’m not so lovable. HAPPY SMOTHER’S DAY to all who are so blessed to feel “smothered.”

Tears, Tiaras, & Mammoth Dog Paws

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!”

“I’m never going to stop. I’m never going to let you go.”

The sound of screaming drifts past as I am walking the dog. He’s a Great Pyrenees named Hercules and we chose to make him a part of our family for this reason. I replay in my mind the decision we made that led to this moment. Our ten year old daughter has been in her school pageant every year.  This year our five year old daughter with Autism Spectrum Disorder wanted to be in the pageant. My husband and I discussed it at length. All questions, no answers.

“What if she has a meltdown?”

“What if we spend this money and then she can’t handle it?”

“Is there anything we can do to assure it goes as smoothly as possible?”

“Should we tell the people in charge of the pageant that she has autism?”

We eventually decided we would just go for it. Sadie wants to do it. Let her go out there and do what Sadie does. We would have faith in God and how He made Sadiebug. We wouldn’t tell anyone who doesn’t already know. We just want her to be her. No labels, no limitations. Beauty pageants don’t matter to us. There is no judge in the world that is more of an expert on how beautiful our children are than my husband, myself, and God. Girls just like make-up, puffy dresses, and curly hair. All Sadie wanted was a trophy. She did specify, “I kinda want a big one.” More than likely she wanted one of her own because her big sister has several. Sadie looks up to her sister and wants to be just like her. Sadie just wants her own trophy.

In many ways Sadie’s autism worked in her favor. She had a pretty dress, make-up, and her hair was curled. She also finally had the opportunity to wear the black high heels we never let her wear. In Sadie’s mind there was just no question as to how she looked. Having done this many years with our older daughter I know the questions that go through their minds, “Does she have a better dress? What if the judges like her hair more? What if I trip?” None of that entered Sadie’s mind. She only saw herself from her perspective and from her perspective she was a princess.

When she made a mistake on stage and went the wrong way the autism also helped. With our older daughter when she went the wrong way once you could see on her face she was embarrassed and lost all confidence. Not for Sadie. She looked at the X’s placed on the stage to direct the contestants, assessed where she was supposed to be, and went there. No embarrassment, no drop in confidence, just “X” marks the stop.

In a darkened auditorium I sat with her father, her twin brother, her baby brother, and most of the town watching as trophies were handed out. I watched my 38 pound child’s fists clench more with each trophy handed to each beautiful little girl. I silently prayed she could hold it together to realize what everyone in the auditorium, but her, already knew. She was the only child without a trophy because she was about to be crowned queen.

It’s 10:30 at night now. She’s had a day full of sensory overload. I dreaded this. As the puppy finishes his business I stand on the porch in the cool, crisp Alabama spring air and look down at Hercules, who is now whining by my feet. He’s only a puppy. He hasn’t had training yet to help Sadie with her meltdowns. With a sigh I decide to do what we did with Sadie and give him a chance to shine. We go in the door and the scene is more horrific than usual. She is trying to hit and bite her dad. She is contorting into positions you only see in movies about the paranormal.

“STOP IT! STOP TOUCHING ME!! LET ME GO! JUST LET ME GO LIVE IN THE WILD!” Sadie screams at her dad who is trying to stop her from hurting herself while also gently applying some pressure to her small body, which helps with sensory overload.

“I’m never going to stop. I’m never going to let you go.” He replies sadly.

“Come on Hercules.” I whisper as he moves with instinct and hops onto her bed. She begins to try to hit Hercules and then looks at him while he puts his mammoth paw across her small belly.  She slowly begins to calm down and quickly she asks for an ice pack for her head that is hurting. She strokes Hercules’ downy, white fur and stares into his big brown eyes. Something passes between the two, a little girl with tears, a tiara, and autism and a gigantic puppy with a patience well beyond his 4 months of life. The crisis is over for the moment.

I sit down and my husband, Sadie’s daddy, is doing his best to try to hold back tears. “It’s just so unfair. It’s such a big accomplishment for her and she can’t even enjoy it.” Sadie’s pain hurts deep inside me and my husband’s pain does almost more. I remember on Valentine’s day how deflated I felt when we took the kids to do fun, free stuff they each would enjoy and it ended with Sadie having a meltdown and having to be carried off the downtown streets amidst all the onlookers. Her kindergarten teacher later told me that the next day Sadie told all her classmates about her exciting day. I said to my husband, “She will.”

I truly believe as a parent of a child with autism, or even without autism, you want to stop the pain. Avoid the meltdowns. Meltdowns are one of the ways children with autism cope with sensory overload. We might be able to decrease the meltdowns, but in doing so we limit their exposure to the world. We limit the opportunities for them to learn to cope. We limit their chance to shine.

I was ecstatic when Sadie got that crown, not because I needed a judge to tell me she was beautiful. If you think she’s pretty in a dress you should see how pretty she is when she, her twin brother, and Hercules are all covered in mud. Or how gorgeous she is holding a frog that slowly, methodically tinkles down your leg. No, I was ecstatic because Sadie’s autism helped her achieve her goal. Sadie used her different abilities to achieve her 5 year old dreams, “Mamma, I want a trophy. Maybe a big one.” Tears, tiaras, autism, and mammoth, white dog paws. They all shine if we let them.

Light it up Beautiful

Out here in the country all things are much more vibrant. The colors, sounds, and the smells are richer. The sun gliding across your skin as the day passes feels warmer and in contrast the stars glowing at night unaltered, as there are no street lights, make you feel that heaven is just a tad bit closer. Out here in the country usually the most uplifting, inspirational moments take place on a front porch. This one is no different.

On April 2, after a day filled with fun, sun, and soccer, I sat on the aforementioned porch with my 5 year old autistic daughter. We enjoyed the breeze as we swung and patiently waited for her dad, sister, and twin brother to bring home pizza. It was a quiet moment between us. Most of them are, neither one of us being overtly fond of conversation. A soft voice breaks the silence, “Mommy, my life is beautiful. God made my life beautiful.”  I looked at this precious child and after a few gut wrenching breaths I admitted, “Yes Sadiebug, God made my life beautiful too. He gave me you and you are beautiful.” We exchange smiles and go back to our silent swinging.

April 2nd was World Autism Awareness Day, where many people choose to “light it up blue” for autism. As an outspoken autism mom you heard nothing from me on this day, nor did I light it up blue. One of the most well know organizations, Autism Speaks, is the organization behind “light it up blue.” Autism Speaks does not speak for my child. They raise an enormous amount of money and roughly 4% of that money goes to aid people living with Autism Spectrum Disorder (ASD). The money does not go to find new ways to assist those with ASD such as therapy, supplies, etc. They simply want to “eradicate” autism. They want a “cure” and prenatal testing so women can choose to no longer have autistic children. Unlike other autism organizations, no one on their board of directors has autism.

As are all my children, my autistic child is amazing. She can memorize calendars and pictures. She can write numbers up to and beyond 247 in what appears similar to some computer code. She has memorized sight words her class hasn’t even gone over, but won’t let me add them to the stack we practice because her class doesn’t have them yet. She’s an artist with talent beyond her years. Maybe this is because she sees things more vibrantly and sees every miniscule nuance of a detail. She’s a fighter. Sometimes that’s a blessing and sometimes it’s a curse, but it is always a constant.

We don’t want a cure for who God made Sadie. If the doctor were to call me, put a pill in front of me, and say, “This is the miracle pill that cures autism.” I would fervently decline. I would take all of the tears, all of the struggles, and all of the challenges every day and twice on Sunday, rather than anyone try to change the child God gave me with a pill made by man.

After all as Sadie said, “My life is beautiful. God made my life beautiful.” Why would you want cure that? That is a sentiment people spend their entire lives aspiring to feel deep within their souls. So, for World Autism Day we lit it up BEAUTIFUL.

 

Jesus Came to Our House

Mainly illness kept us from doing anything this Easter, the baby is still sick, not to mention the rest of us. I look at Facebook and see family pictures of everyone at church and family functions. Everyone looks beautiful by the way. Families want you to come over, friends invite your family out, but few will know and understand that with Autism the routine of the day is shot first thing in the morning. Chocolate and toys are not the usual routine of the day.

 

The biggest church days are Easter and Christmas. Not coincidentally the worst days to take an ASD child to church. As an ASD parent you want to phone family and churches and ask what days will there be the lowest attendance? Summer beach weeks maybe? Luckily, even on Easter, God is not just found in the church. He always is invited in our home.

 

Actually He lives here and He understands that with the life He gave us there won’t be cute outfits. They are likely to be itchy, or the sandal straps feel weird so socks are required. He understands the packed homes and churches with all the beautiful colors, sounds, smells of freshly showered people and freshly cut flowers is overwhelming to the sensory processing system.

 

So today, and every day, thank You God for coming to the sometimes shut-in ASD family that we are so grateful You created. It’s so comforting to know if we can’t be in Your house, You will always be in ours.

 

Handled Like a Boss