When Everyone Underestimates Your Child with Special Needs

When Everyone Underestimates Your Child with Special Needs August 7, 2018

 

As parents, most of us want to see our kids succeed. Most parents want their children to become successful and independent. As their children reach their various milestones, most parents smile with pride and joy. My story of motherhood is a little bit different. My son has numerous medical conditions that have ravaged his body. In his short time on earth, many people have underestimated him. Some of his therapists and doctors have given up on him. However, I never stopped believing in my son. Watching him destroy expectations gives me incredible happiness.

At age three months, my son had a horrifying health crisis.

He stopped breathing in our home, and we were rushed to the hospital. For more a week, machines kept him from dying. Doctors told us several organs were close to failing. A doctor pulled us aside to tell us to prepare for his death. My husband and I refused to believe the doctors. We knew our son would survive.

The night we were told he might die, doctors started a new medication. Doctors gave him a potent steroid. They told us if the steroids didn’t work, our son would die. Within hours of his first dose of the steroid, our son started to respond. Our son began to recover. His organ function improved. The next morning doctors told us he was going to survive.

Doctors ordered additional testing to review hormone levels. All the labs came back abnormal. Doctors ordered an MRI of my sons brain. When they had all the information, they told us our son had no pituitary gland. They also said that images showed no brain damage. However, they believed he suffered a substantial brain injury from low blood sugars.

Then a doctor said to us:

“You child will have learning disabilities. He will never be Einstein.”

When we asked for a prognosis for his life and development, they couldn’t tell us anything about his future. They said children are resilient and can recover from brain injuries. My husband and I realized that we needed to focus on short-term goals instead of long-term planning.

After my son recovered, we knew that he would be late to meet many milestones. However, we believed in his abilities. We worked hard to help him learn. His tenacity and determination inspired his doctors and therapists. As a toddler and preschooler, my son gained skills through therapy. Five days a week, I drove him to appointments all over town. He loved his therapists. Most importantly, he liked to learn.

Every week we worked on homework given to us by his therapists. Our home turned into a therapy center. I created sensory bins, bought sensory toys, chewies, z-vibes, trampolines, headphones for listening, peanut balls, play-doh, and worked on balance with obstacle courses. My son loved the activities. I made everything fun, so none of the assignments felt like work.

Over time he started to meet his milestones. In fact, he began destroying the goals his therapists gave him. He walked at 19 months old. Through therapy, he learned to master fine and gross motor skills.

However, he still struggled in cognitive development. He struggled to gain weight. Doctors told us malnutrition could impact cognitive function. Despite years of feeding therapy, he never mastered how to chew and swallow. His doctors decided he needed a feeding tube.

Within three months of feeding tube placement, he went from non-verbal to verbal. When he finally spoke, he spoke in 3-4 word sentences and had over 1000 word vocabulary within months. We took him for an assessment with psychologists a year later. Our son no longer had any delays in cognitive function.

As we scratched off his cognitive delay, we worked hard on trying to improve his social function. He was beginning to exhibit signs of Autism. We enrolled him at a clinic that specialized in Autism. He received his Autism diagnosis in May 2017.

We began therapy to address his sensory issues and behavior. After a few months, it became clear to us that there was more to the story than a diagnosis of Autism. His health began to decline, and his cognitive function decreased.

We took him to see one of our specialists. Our neurosurgeon ordered additional testing. After she completed the tests, she told us our son had hydrocephalus. In December 2018 she placed a VP shunt into his brain to drain off excess water and decrease pressure.

They believed he might have learning disabilities associated with hydrocephalus and not autism. However, we needed to wait for his brain to heal to see how his development improved.

In typical fashion, my son became a new child.

He began asking questions, engaging in conversations, making eye contact, and finding ways to socialize and interact. We still noticed traits of autism in his behavior and personality, but his overall function improved significantly.

While our journey hasn’t been the same as all families in our community, I can assure you that we are not the only ones that have been given a grim diagnosis. Other families are raising kids like my son. They are beating the odds every single day.

We never let the news of our son’s bleak prognosis drag us down. Instead, we believed in our son, and we allow him to lead the way. Without his tenacity and eagerness to learn, he never would have achieved his goals.

No part of this has been simple for him. Fighting and advocating for my son’s development and health has been stressful and exhausting for me. For him to reach his full potential, I left my career to focus on him. At times I struggled with what I had to give up. However, all of the sacrifices were worth it in the end. My son’s development meant more to me than my selfish needs.

I know there are millions of moms out there just like me fighting this fight. They put their needs and wants to the side. Every day they work tirelessly to help their children reach their best potential.

Perhaps my son’s future will look different than other children. He may not attend college or live independently. Sure, maybe he won’t be Einstein.

However, I watched my son beat death. For six years, I have witnessed his grit and determination to prove others wrong.

The pride on his face when he learns something new means more to me than any award or accolade he could ever win.

Learning my son had brain damage was a dark day in our lives, and hearing our child might not amount to anything was even harder to comprehend.

However, I have an entirely different outlook now.

Now I gladly challenge anyone to underestimate him.

Go ahead and underestimate his skills and his abilities in life.

Tell us he won’t do anything productive in society.

Go ahead and say he will never be typical.

None of that matters to us.

It won’t be the first or last time we hear that he WON’T be able to do something.

What we know is that he will accomplish whatever he sets his mind to achieve. He will tell his story.

So go ahead and underestimate him.

That will only push him harder to succeed and show you anything is possible.

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