Disability or Delight Part One

Discovering the diagnosis of a child brings about a lot of emotion. Fear. Grief. Sadness. Concern. Disbelief, and a myriad of other emotions. Every parent who has walked this road with their child has a unique experience.

I have walked this road with two of my four children. In this multi part series, my desire isn’t just to give you a peek into our lives, but to give encouragement for those who are traversing this road for the first time, or are supporting someone who is.

I cannot recall a time in my life when I did not have a close relationship with someone who was effected by an intellectual disability. From my childhood kindergarten buddy to the little boy I babysat in middle and high school, the Lord seemed to gravitate me toward those with intellectual differences. I volunteered in the Special Needs class at my high school, and was paired up as a day camp counselor for a “Gentle Giant” who had autism. These individuals were such a joy to me. I loved how they saw life. It was so simple to them, so uncomplicated.

When I went to college, I knew that I wanted to pursue education. What I didn’t expect, was how all the years of preparation in my education would one day be utilized. After completing my degree in Elementary Education, I began pursuing a Master’s Degree in Special Education: Autism. I was a substitute teacher in two Autism Classrooms in Cabell County, and took my first teaching position as a fifth grade teacher in a private Christian school while continuing my path to a Master’s Degree.

Teaching children was such a joy for me, but after having my first child, I knew I wanted to stay home with her. I put my Master’s Degree on hold, focusing on physically and emotionally supporting my husband through medical school, and spending my days with my little girl.

Fast forward four years and two babies later. Our youngest little boy was born. He was such a joy. All of us couldn’t get enough of his snuggles and that big dimpled smile of his. His first year of life, although joyful, was full of “red flags” for this Momma. Not only had I gone through the newborn stage two times prior within such a short period of time, but I had studied typical childhood development in both undergraduate and graduate college.

At 12 months, I confided in his pediatrician that I thought he may have Autism. He didn’t seem to agree, but understood my concerns. He recommended that we withhold the MMR vaccination, as it was under some very public scrutiny regarding Autism, and I agreed to do so. The next 10 months were simultaneously sweet and sorrowful. I felt like everyone was telling me not to worry, that he was just “on his own curve”, but I knew that wasn’t the case.

He began Birth to Three, an early intervention program, at 15 months old, and I began a journey of advocating for my little boy. He had speech therapy, occupational therapy, physical therapy, and food therapy. Even his early therapists were confident that he would “wake up talking” one day. Still, I saw the signs.

No eye contact

No pointing, gesturing, or meaningful communication

Sorting objects by color and only preferring one

Not sleeping

Picky Eating (He had five foods he would consume)

Sensory seeking behavior (preferring extremely hot or extremely cold water, rubbing his forehead on concrete, head banging, spinning, etc)

and more…

Life as we knew it, for our family and particularly our little boy, was going to be much more arduous to navigate. How could we create a safe home environment for him? Would so much of our attention be on him that our other two children would feel neglected? Will we ever get to the point where we can have a vacation as a family and it be relaxing again? Will the meltdowns ever go away? How do we find the support we need when no one around us even believes he truly has autism?

However, the Lord was so gracious to uphold us through all of it, and our little buddy was diagnosed promptly and became one of the youngest recipients to receive a spot on the WV IDD Waiver Waiting List. This would enable us to ensure lifelong access for him to various therapies, adaptive equipment, respite care, and on the job training and support as an adult.

The Lord also gave us amazing therapists to support us through the WV Birth to Three program when we moved to another county. He grew leaps and bounds in improvement with two of his very favorite therapists, Ms. Catherine and Mrs. Shanna. These ladies followed us even after Birth to Three and I can’t say enough about their expertise and influence on our family. My little guy went from nonverbal to verbal under their care. He increased in his fine and gross motor skills, and watching them in action helped prepare me to continue lifelong in home therapy for him as his mom.

As time has passed, we have watched miracle after miracle take place with our “Little Buggy,” as we affectionately refer to him. We definitely have difficult days, especially when schedules are adjusted, he is ill or in a growth spurt and doesn’t know how to regulate the changes, etc. However, keeping our eyes on the growth, even if they are baby steps, has kept us encouraged. Here are a few of my favorite miracles in Buggy’s life…

Hearing him say a word and treasuring it. He would say words and then not repeat them for months. The first time he said, “Momma” and “I love you” are forever treasured in my heart

Our first road trip that didn’t require a social story. Up until a couple of years ago, I would need to make a social story to prepare him for visiting new places. If not, there was a meltdown at every rest area, gas station, church we visited, etc. Our first trip without a social story was such a significant miracle and milestone!

Graduating from 5 foods to now deciding he will try anything!

Being told he wouldn’t ever be able to ride a bike and watching him ride a bike, scooter, roller skates, and anything else he sees his big brother doing!

Risk taking behavior diminished drastically. He no longer requires a safety stroller when we are out! We still have some work to do on other risk taking behavior, but I no longer have to be within eyesight at all hours. He can play independently in his room during roomtime and thoroughly enjoys it!

He learned to read and write!

He understands salvation! He loves Jesus and prays for those who don’t know him as their Lord and Savior every single night!

The little boy who was unable to gesture or ask for his needs/wants is now able to not only tell me what he needs/wants, but he has learned to do so in a calm way and accept the answer “no” when he asks for an extra slice of cake while shining those precious dimples.

He is potty trained during the day!

and the list goes on and on…God has been so incredibly gracious to us!

I wanted to close with some of my favorite things about this special little guy. These are the things that make him the loveable, adorable, funny, sweet, gentle, and precious gift that he is.

He gets so excited about the little things in life. Nothing can light up a room like he can when he is excited. We have so many video clips asking him if he would like to do something that he likes that others take for granted(take a bath, play outside, go eat dinner, etc). His reply is always filled with spins, jumps, flapping, and grins.

Never a day goes by when he doesn’t take something literally that isn’t meant to be literal. This helps us all to get a good laugh and reminds us not to take life too seriously.

He still loves to hold our hands and give kisses on the cheek : )

He points to the sky and says, “God painted a beautiful sky today.”

He memorizes passages in the Bible and quotes them appropriately.

He says everything is “so cute” in a sing songy voice that makes everyone melt

He is persistent. Although this can be a challenge at times, it has also been a great asset to him. It may take him 45 minutes to do something that takes 10 for the rest of us, but he doesn’t give up!

He notices who is by themselves and approaches them at church. This may be because he wants to tell them about roller coasters or the latest trip our family has taken, but it makes people feel special. No one is lonely with him around : )

There is so much more that I could mention, but I hope this gives you a peer into the delight God has given us not in spite, but because of disability.