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Enensa

April 3, 2016

 

Meet Enensa. He's 14 years old and described by his parents as not only a cool and loving kid, but has a warm personality with the ability to connect with almost anyone. Despite having autism, he still has personal traits like everyone else. "With or without autism he'd still be stubborn, very determined, but stubborn", says his mom Angela.  

 

 His determination fosters his unique capability to solve problems, and he never fails to let that shine through. With a smile on her face, his mother shared that when he was younger there was a computer that he and his siblings loved to play on. One day while playing on the computer he looked around for his brothers, when he realized the coast was clear he sprinted upstairs. When he ran back downstairs his mother realized he put on a pull up. Clearly in order to protect his fort he needed to remain in place, now leaving to go to the restroom was no longer an issue. 

 

Autism rears its head at different ages, and the signs are not always the same. In Enensa's case he was between 16 and 18 months when he was still crawling and would scream. His father, Donnie, explained that he had a spectroscope that displayed sounds into images, and he would stare at it for long periods of time. "Enensa would get so absorbed into things that he wouldn't be aware of his surroundings", says his father.  His play skills were not like his siblings. Instead of rolling a toy truck he would pick it up and spin the wheels and line up all of his toys or stim, but there was a distinct moment when his father knew prior to his diagnosis...

 

 "When I was a child I interacted with a girl that had autism, and she always did this spin, I can't describe it, but there was a particular spin that she would always do", says Donnie. "One day I walked into the living room and I saw him spin. The same spin that the little girl did, and at that moment I knew. I wanted to cry because I knew what our world was going to look like". 

 

 The feelings that come with the diagnosis can be overwhelming. For his father it was depression. " I thought I saw the future of my child and what he was going to do crumble away, it was hard to accept". The stages of helplessness and lack of focus at work would dissipate with time, and with the strength and love from his wife and family it wasn't far out of reach.

 

"The official diagnosis was hard", explained Angela. " The signs that led up to the diagnosis softened the blow, but it was still a slow acceptance over the years". You could see the emotion on her face as she relived the diagnosis, but said something powerful that all autism parents should hear. "I never say why me? Why not me? If I had autism I would want me as a parent. It was meant to be. Over the years I developed that attitude."

Through the love and support of his parents, they did everything in their power to get him the help he needed, but it was an uphill battle. There was difficulty finding professionals that had the skill set and knowledge to help their child. In order to know what he needed they needed to educate themselves so they could self-advocate for themselves and most importantly Enensa. They were not provided with the services they knew he needed.

 

Finances. One of the biggest challenges autism parents face. "They weren't going to just give us services because we could identify the need, we had to hire advocates and lawyers, and we almost went bankrupt". After all the blood, sweat, and tears they managed to get him help.

 Other than the background challenges they still had some at home. Enensa wasn't sleeping, which in turn kept everyone else up. "Not only was he not sleeping, he was screaming", says Donnie. Between taking care of his siblings, finding services, going to work, and not sleeping, they were running on fumes. 

 

"Often times I felt that the[other] children were starving because Enensa needed so much attention", explained his father. "It was really hard because we couldn't go to certain places because of Enensa, and if we did and he had a meltdown we had to drop everything and leave".  They explained that they always create a meltdown protocol when they go to certain places.

 

Once puberty hit, so did a new list of challenges. He began to have seizures, became anxious, had loud ticks and vocal stims, as well as OCD.

 

 

" I never say why me. Why not me? If I had autism I would want me as a parent..."

In the midst of adversity there is always sunshine and milestones that are met. He began to walk a month before his second birthday, his parents explained he never used his legs when  he "crawled", it was more of an army crawl. Enensa's began to speak at the age of 8. He had 200+ words, but would only use them at school with his teachers, nothing was spontaneous until then.

 

His biggest milestones came around last year. His father happily shared, "Enensa came home from school one day and I asked him how his day was and responded with 'good'. We had a few more exchanges before he ended the conversation, but I had a conversation with my son". He now looks for his father in his office routinely to ask for a high 5 or a kiss which speaks volumes for him and his growth. Where there was a social disconnect and lack of interest of others Enensa has blossomed, it also shows when he shares his favorite popcorn.

 

His parents attribute his success and a lot if their help to his 2 loving brothers and sister. "They love him, and always want him included", say his parents. The abundance of support and help from their family has gotten them through many trying times such as sleepless nights. They can't forget all of his wonderful therapists throughout the years that developed a genuine connection with him.

I asked them what advice they have for current and new parents of autism. "Get as much help as you can...accept help", says Angela. "Do what you can to hold it together. Get to a point of acceptance, so you can plan what is normal".

 

It is stressed to be on top of your health, have someone to talk to, have some place you can decompress. "It's taxing. You will degrade if you’re in turmoil." They recommend that parents look into Applied Behavior Analysis Therapy as early as possible and suggest the son-rise program as well, " It has helped parents come to terms and bring love and acceptance to where your child is."

 

Networking and meeting other parents. There are a number of resources that can help you and your child, and what better way to find out than other parents, people that can empathize with you.

 

Therapy. "Autism can and will destroy relationships and make you go bankrupt", explains his parents. "Get a counselor if you're married, it will help".

 

 

"It's not the end of the world, your life isn't over. You're going to have wonderful experiences, they're just going to be different experiences."

 

 

 

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