I’m writing tonight from a place of compassion and encouragement to others.
My youngest son has developmental challenges. He is often mistaken for having Autism yet he has never been diagnosed. To me it doesn’t make any difference, he is just Erik and I love him as he is. Many of his friends fall on the spectrum of Autism. Here is one of his friends he’s grown up with down through the years. His name is Nikolas. He is nonverbal but very intelligent. Nik uses other ways to communicate with us.
I read alot of posts from other moms, dads, about their children with regard to concerns about their growth and development. Mostly new parents who’ve just received that news of their child’s diagnosis and prognosis of what his/her future might look like.
I would like to just share a little more of my son’s journey. Some of his behaviors and delayed milestones as he developed down through the years. He could not sit up straight on his own until he was almost 2 years old. He had aspiration issues when swallowing and used to have feeding therapy. He used to be nonverbal and have tantrums often. He used to use a speech device to communicate and learned how to sign.
He would bang his head on the floor, throwing himself backwards, backing up into the wall and bang it on the TV, or picture window, and outside on the concrete. There was a time when we had just brought our brand new big screen TV and he decided to back up to the screen and bang his head, caving in the entire screen. My husband had to be creative and use heavy duty packaging tape to pop the screen back out. This was around when televisions were still the bulky sets on wheels. Erik also wore a helmet during school to protect himself from head trauma because he would just throw himself backwards during a tantrum.
I can recall another vivid memory of a time when our entire family had the idea to go to the drive-in since Erik didn’t do well in a normal theater. He was fearful of the dark, wouldn’t tolerate loud noises, and it was too much stimulation for him. There was a playground and gravel roads at this drive-in. He used to love playing with sand in those days. Anyways, he was sitting on the ground of the theater rather than playing on the swing set or in the play area. He wanted to sit on the ground and kick the gravel, and feel the dirt in his hands while rocking back and forth. So we let him, since this was normal for us. This is the part I’ll never forget. There was this other small child who walked up to him and said hi to him. He couldn’t talk then, so his way of responding was making a “whoooo wooooo” sound and rocking much faster. So she looks at him puzzled because she couldn’t see from the outward appearance that he was “different”. Then she looked at me and said, “what’s wrong with him?, And that was the first time I had ever had a small child ask me something like that, so I was stumped and smiled and replied, “nothing is wrong with him, he’s just special”. She said, “I’m special too” and she then ran off to play. This was a somewhat educational moment for me to teach myself how I was to respond to that when being questioned by a small child???
Erik began school at age 3 and wasn’t walking yet. He was transported to and from school in a wheelchair as well as during school hours. His prognosis given by doctors was that he wasn’t even going to live long. Or he would be a “vegetable” if he did survive. It was through a lot of prayers and continual faith in God to heal my son that he is still here today.
He wasn’t toilet trained until his sophomore year, until then he wore adult men’s depends diapers. His gross and fine motor skills were impacted by his trauma as an infant. He walks with a slight limp. He does not look where he’s walking instead he uses and has always relied upon his other senses to guide him. He feels his way with his feet, and doesn’t miss a beat. Its as though he has the senses of a blind person. I say that not knowing what exactly a person that is blind is like. But you get the picture.
I wanted to just say all that to say this. Just because the prognosis wasn’t good, doesn’t mean his life didn’t end up being good. SURE it took a whole lot of patience, love, nurturing, commitment, doctors appointments, therapy sessions for OT, PT, Speech, and specialists, sleepless nights, and prayer but it was worth every moment.
He is 17 now. He is a senior this year. He talks and loves to be social with everybody. Yes, there are times people don’t understand his pronunciation but he’s came a mighty long way. He no longer bangs his head. He is able to eat and feed himself after we prep his meals and cut pieces and provide a straw. He is still working on wiping himself for toileting and often clogs my toilet almost daily, but it’s about being patient. It’s a work in progress.
Once his heart stabilized and became healthy, he began having seizures often. And that lasted for a few years, and again I prayed asking God to heal him from them. After many years of consistently praying strategically, my prayers were answered. I have had ALOT of sleepless continuous nights as he was growing.
He used to sleep in our room so I could keep watch over him. Then after years of stability, he had his own room and I still wasn’t able to sleep through the night. Often times I would get up several times to go check on him and make sure he was breathing and ok.
The seizures. The ventricular tachycardia, and hypertrophic cardiomyopathy are diagnoses of his past. They can now be officially considered his “medical history”. Because their no longer in his present life. Now we are where we are. Erik has “developmental disabilities” and for the most part he is accepted for who he is. However, this depends upon the environment we are in, and whether people know him or not. We still get the stares, the oddball looks, and whispering as we pass by. At this point, it doesn’t bother me as much as it used to. The difference between then and now, I speak up and I’m his voice, his advocate.
As I said, he’s 17 now. He is working on being fully independent with toileting. This year he is a senior and will be graduating. For his high school homecoming assembly he was nominated as “Lord of the day” and his friend “Lady of the day”. He’s actually a pretty popular student and well-known. He will gradutate this year and transition into a community program after high school.
He is a creature of habit and has a daily routine. It’s the same rocking motion that comforts him as he sits and watches t.v. or eats, or a bouncy ball to sit and bounce on while playing the WII. He eats the same few selective foods every single day. He is a texture person, certain textures he gags. He enjoys attending church, he loves to sing praises to God, and he loves to watch toddler shows or certain preachers on TBN or Daystar. He still bathes with bathtoys and Mr Bubble. He bowls with a ramp to assist him and he loves bowling. He wears headphones for noise reduction, the construction or gun range type. He hates the 4th of July so we don’t celebrate anymore, which is fine because I don’t like the noise either. He doesn’t like New Year’s Eve either because they often light fireworks or shoot guns in our neighborhood. And this is all at age 17.
Some people might look at this and question my faith in God, maybe their not a believer for their own reasons, but I just want to say I prayed for many years and I used to ask God to make my son “whole” and one night I had a dream and I woke up with the thought that God was showing me in my dream that my son, my Erik, was already made whole. What I had looked at as him being somewhat “broken” or “in need of healing” in the physical, God was saying he is whole in spirit. He is right where he’s suppose to be, as he is suppose to be and he is who he is suppose to be. He is still a typical individual just like anyone else, he still has tantrums at times, he still has feelings. He’s got such a genuine spirit for God. Erik knows who saved his life, literally. He is unique, he has a contrite heart and a committed spirit.
And I believe God’s grace and mercy are the only reasons why my son is still here today. And there is a greater purpose for why he endured such great tribulation, and suffering. With many obstacles to overcome. Many roadblocks to conquer. Several battles we fought and won.
This may sound odd, but I know he doesn’t see himself as being any different than the next person. He always puts forth effort to try things even if he can’t accomplish it right now. He at least tries with his best effort. One other memorable moment I have is his 5th grade skate party field trip. They attempted to get him a walker thing to hold and skate. He just couldn’t even stand upright. Yet he so badly wanted to be out there skating with friends, but instead he sat out the entire time with his classmate.
There are things he is good at, and there are things he is still learning and there are some things he may never be able to do. And I’m okay with that, because I’ve accepted him as he is. I used to live in a “fantasy world” and be unrealistic somewhat with his capabilities, yet now I know it’s better for him and myself to meet him right where he’s at and support him at his speed and level of development.
My husband and I are prepared to care for him until we can no longer do it. I’m optimistic about his future. He might still be in his 30s and older watching Barney or Toy Story but this is my Erik and I love him for who he is.
Anyways, I just hope to encourage another stressed out mom, dad or parent that has a child with health care challenges and possibly developmental disabilities. Don’t give up hope for brighter days. Don’t settle with a negative prognosis from a doctor. Don’t limit your child’s development. Be patient, be involved, be realistic, and persistent in prayer, even if it doesn’t feel or seem like God is present. It’s a journey at times, many days will seem dark with heavy clouds and thunderstorms but hang in there. Trouble doesn’t last always. Weeping may endure for a night, but joy will come one morning.
Thank you for letting me be me and share my journey. Hopefully someone is inspired. I know this also, when your “deep in it” it doesn’t seem like there is any inspiration or happiness but it will eventually be different one day. Today will never come again. And time is the one thing you cannot get back. Make the best of each moment.
I’m not here to push “religion” but I am here to express the belief I have in the faith I have for the God I choose to believe in, Jesus Christ. And how my faith has worked in my favor. And I’m most definitely not trying to give any impression that I or my son are the perfect examples of mankind, because I will be the first to humbly raise my hand and admit that if you are looking for a perfect example I’m not that person, yet I do strive my best to be a somewhat decent human being.
Everyone has someone or something that helps keep them motivated and it was my faith and God who helped me along my journey.