The Holidays Mean Days Off, Family, Fun, and Food!!

I do love this time of year. My reasons for loving it have changed over time as I have changed. When I was a little girl, Thanksgiving and Christmas were special because we had less days at school. Honestly, we lived in the country and tromping a half mile or so through thigh-high snow to get to the bus stop was not fun for an 8-year-old little girl. Snow would get packed down in my galoshes and my clothes would be wet by the time I arrived at school. My ears would hurt terribly with the least little breeze. So, being in a warm cozy home was just my cup of tea and why I loved days off of school. This in turn made me love the holidays.

When I was in my 20’s the holiday season was important to me because I loved having my now grown up family gathered together again under one roof.  I would get to see my two older brothers who, like me, had branched out on their own and were busy living their adult lives. I truly enjoyed seeing them!

By the time I was in my early 30’s I had been married with children for a while. I found that I viewed holidays with a whole new perspective and greater gusto! Experiencing family festivities through the eyes of my children allowed me to re-enter that thrilling time of the holidays with awe and wonderment. The days of Christmas were filled with joy! The anticipation of opening gifts, the excitement, the curiosity of unknown treasures awaiting our discovery in the wrapping paper, and the food… that amazing food! We always baked a birthday cake for Jesus. It was a wondrous time!

A Little Girl’s Prayer and Some Saving Grace

After I turned 34 we gave birth to our 4^th child, Moya. She was quiet and gazed at us with a thoughtful and intense look, especially for a baby. She had lovely porcelain skin and cupid’s bow lips. Zoe, our oldest who was 6 at the time, prayed for a little sister non-stop after her second brother was born. She loved her two little brothers, but they would only stand so much dressing up in tutus and teeny tiny pig tails. Zoe was ready for a real sister to play with. Moya was meant to be; Moya was the answer to Zoe’s prayers!

As a mother I could not be happier. However, the next four years rapidly became the setting of some big trials that filled our family with unknowns and much confusion. In fact, our holidays and special occasions could sometimes be described as stressful way beyond the usual busyness or preparation for them.

Moya taking a bath. Whether it’s a shower or a bath, the pool or the rain, this is how she keeps the water from getting in her ears. Who wants water in their ears anyway, right? For Moya, it’s much more than that.

Within the first year after Moya was born we went to the doctor for her scheduled check-up and immunizations. Within 24 hours of leaving the doctor’s office Moya became a different baby. She began crying, I mean “crying as if in extreme pain” crying. Nothing made her feel better. I thought it would go away eventually since I’m accustomed to my other kids not feeling great from their routine check-ups. But this… this was different. She became “distant”. She wouldn’t look us in the eyes anymore. She didn’t respond to our voices as if she recognized us.

Moya would cry hard at the least little noise. The only thing that consoled her was a particular brightly colored movie called “Barbie of Swan Lake”. I discovered this accidentally one day when I turned the movie on for all four kids to watch while I washed dishes. Once the movie started, total silence entered our home. I was startled and ran to the living room to see what was wrong. She was STARING at the TV screen completely engaged. The moment the ending credits started rolling her wailing would fill the house again. She would stop instantly once the movie was rewound and the first scene began. That movie was our saving grace for a while.

The World and Everything in It

Nothing besides that movie seemed to take her focus off of the “pain”. I’d nurse her, hold her, change her, talk to her, and bathe her. For 3 years the doctors said she was fine. So, I tried everything I knew to do as a mom that already had three kids worth of experience. Something was different, something was wrong.

Daily routine was hard enough, but holidays and special occasions were heart breaking. If we sang for an occasion she cried woefully. If we clapped and cheered during the children’s school programs she became angry and aggressive, as in: pinch, hit, punch, pull hair, and stomp on our feet. All the while she couldn’t speak one word to help us understand why she was behaving as she was. She only made noises and spoke gibberish. The doctor kept reassuring me that she would talk eventually.

Living in the house was hard enough. She ran scared out of her mind at the sound of the toilet flushing. She screamed at the sound of the garage door opening. The vacuum made her hide in a closet with her fingers in her ears. Then, in the rare moments of silence, she would pace back and forth and walk in circles.

Now, to increase her discomfort and misery consider exposure to the outside world. The external world is a place where you can’t control sound or anticipate loud noises. Noises outside would cause her to run in a panic with no judgement as to which way was safe. It was like she couldn’t hear me at all when I’d scream for her to stop and run to catch her as she ran into the middle of a street.

The things we experienced in everyday life were only magnified during the holidays. The children being home from school more than usual, the brief change in schedule, social gatherings, special programs, music, fancy clothes that were not blanket soft… all these things were unbearable to Moya. We felt powerless as she went through bouts of unruly meltdowns and violent behavior.

Oh! Now We Get It

When Moya turned 4 years old we finally had a breakthrough in understanding of why every holiday and large event was torture to her, and subsequently us, as a family. After doctor visits, months of searching for answers, and countless tears, we were finally referred to an audiologist. They, in turn, referred us to an office that tests for Sensory Processing Disorder. That office was well versed in working with children on the Autism Spectrum. We learned that SPD is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.

Children with SPD often have a hard time interacting with others, coping with social and family relationships, regulating their emotions and just basic day-to-day functions. We were finally beginning to gain insight into Moya’s world.

They pointed out that our little girl had classic symptoms and characteristics of a child with SPD and Autism, yet they said she couldn’t be officially diagnosed until she was 7 years old. We didn’t let that stop us! We knew she needed help and we set out to get help for her. We were not about to wait until she was 7 years old!

Over some time filled with tons of research, lots of trial and error, and a fair amount of common sense, we learned how to manage her sensitivities and help her find her voice. We learned strategies for steering through stressful situations.

If we planned on being out in a crowd, we relied on some amazing devices called “ear plugs”! Ear plugs became Moya’s best friends. We did go through several pair before we found the ones that she could handle having in her ears. Also, if we were at an indoor event, my husband and I took shifts between being with Moya and being social.

Going to a movie theatre where the screen is BIG and the sound is amped for maximum effect meant that we sat in the very back of the theatre so that the screen was less intimidating, and again, ear plugs were the answer to these situations.

Singing Happy Birthday meant that we asked the party guests to sing as quietly as possible. I’ll never forget the first time we did that. Moya actually smiled really big and pretended to conduct the singers. She most certainly felt celebrated as we all whispered our way through the song.

We bowed out of large or late night events. I bet we seemed rude at times by not going. We worked hard to avoid really crowded places that might prove difficult for her. We felt that she was a cause worthy of seeming rude for.

I tried to find soft simple clothes with no lace, no sparkly threads. Layers were best because she would get hot and cold easily. Being hot would cause her to have a meltdown (no pun intended) just as well as any chaotic environment would.

We tried our very best to prepare her mentally if there was going to be a schedule change. To help her understand the course of the day we had a chart that she followed with little laminated pictures representing daily activities. Above a line across the middle of the chart, we lined the pictures up according to the events of the day. Once an event was over, she would move the picture below the line, and so on.

Learning to Speak at 5 Years Old

Communication before Moya was 5 years old was extremely difficult. Sign language was a life saver as it was the primary way we communicated with Moya during that time. When we finally had an understanding of what we were dealing with, we found affordable speech therapy at our local college in the form of two 50 minute sessions a week. It was a God send!!! We used sign language less and less over the years as she learned words and sentences.

We learned that putting Moya in a mix of loud children was counterproductive and did not help her interact with her peers, much less learn in a classroom. Eventually we started homeschooling our kids. We discovered that her siblings were an incredible help when it came to engaging her in play, conversation, and daily interaction. Plus, they understood her better than anyone else and helped her work on saying her words correctly.

When Moya turned 6 years old she was able to communicate in a way that everyone could begin to understand (following lots of speech therapy and one on one time). She told me that loud noises made her legs feel like they were on fire with ants crawling all over them. That was an amazing discovery and quite ground breaking! I’m not referring to the way her legs felt, but the fact she was able to communicate what she was feeling and experiencing.

The Determination of Us All

Now that I’ve shared some of the ways we managed her sensitivities and developed communication skills, I want to share how things have changed. She started learning how to manage sensitivities all by herself. She would ask for ear plugs to carry with her in-case she needed them. She learned to recognize the feelings and emotions that would trigger a meltdown. She would inform us that her stress level was rising or she would let us know that she needed to go to a quieter room. She used pacing as a soothing and refocusing tool when she was uncomfortable in any way.

Moya is 12 years old now. She’s changing by leaps and bounds. Some of the sensory issues have declined with each year of maturing and therapy. She still has anxiety in certain situations, and loud music or crowds can still repel her, but I’m blown away at how she manages to push through and move past so much of it because she wants to enjoy what everyone else enjoys. Now, our holidays are so wonderful!

Since those first illuminating days when Moya was 4, we have come an incredibly far distance. We have worked hard and studied long to figure out what works for her. Through dedication, love, determination, and hope, Moya has become one of the most kind, thoughtful, gentle and caring little girls that we, as her parents, could imagine!

I know that not every Autistic child will make some of the changes that Moya has made. I still hold dear that each autistic child, or any child with unique needs, has a right to be loved, nurtured, and taught as much as they can absorb.

I hope that these bits of our story have been inspiring, encouraging, and helpful. Just know that you are not alone if you have a child diagnosed with SPD, CAPD or Autism. You’re not a bad parent when your child has a meltdown. When the day is long, rest will come eventually. Know that all of us at the MOYA Foundation are cheering you on, praying for you, and believing that your child has a purpose and a destiny that they will fulfill. Merry Christmas and Happy New Year.