Walk As Lions

You know those moments, when you are so filled with hope for your child’s future, over something your child has accomplished, that you’re brought to tears? I had one today.

I don’t share a lot about my oldest son Ethan. I had him when I was young and incredibly naïve about the world. I wasn’t married and for a very long time carried this burden of shame. I believed that whatever difficult thing happened, I deserved, because I got pregnant before I was married. The perceived condemnation I felt, caused me to be very reluctant to ask for help of any kind, or even admit when I was struggling.

When Ethan was 4 weeks old, I started new college courses, I would finish my degree before his 6th birthday.  I knew I had to do whatever it took to give him a better life. He shouldn’t have to suffer just because his mother was a screw up. When he was around 18 months old there was a custody battle. I was questioned by an attorney in court and it dawned on me by the things that were implied, that Ethan was not communicating at the level he should be.  He had always been on the late side for his milestones, (sitting, crawling, walking). I was determined to be a good parent. I was not going to be competitive in my child’s accomplishments. I would let him do things at his own pace. I would be proud of his achievements and never make him feel inadequate for not doing more than he was capable of. That was a long-term parenting goal for me. Therefore, until that day in court, I hadn’t worried over his slight developmental delays.

I took him for a speech assessment and at nearly two years old, his communication skills were placed at 0-3 month old level. I was shocked. We got involved with early intervention and therapists began working with him. I still didn’t panic or worry because I thought, “what 5-year-old do you know who doesn’t talk?”  Or walk? Or isn’t potty trained?
I was obviously not familiar with the world of disabilities or special needs.

During this time my mom watched Ethan while I went to classes in the morning. He went with her to a bible study and an occupational therapist, who was in the bible study, mentioned he looked like he was having seizures. This same OT would go on to work with Ethan on her own time, as would my sister-in-law’s mother, who is a speech therapist.

After more testing it was determined that Ethan had epilepsy. He was having multiple seizures a day. I felt terrible. I thought a seizure looked like falling on the ground and convulsing. I had no idea there were many types of seizures that didn’t involve loss of consciousness or convulsions.  We then began navigating our way through medications and getting the seizure activity under control.  The hope was that once the seizures stopped, Ethan’s development would take off. Unfortunately, that would not be the case.

A few weeks before Ethan’s third birthday, he and I moved to Colorado Springs on our own. Long story short, outside of finishing college, I devoted my entire life to Ethan’s recovery. I battled the school district for years with the help of a pro-bono attorney. Ethan received amazing specialized education as a result. He went to therapy five days a week. I got him involved in any and every therapy available. We had all the basics like speech, occupational, and physical therapy. Then innovative therapies like, movement therapy, listening therapy, horse therapy, swimming therapy, music therapy, and ABA. We did EVERYTHING. His entire day (including summer), was education and one therapy to the next. For several years I averaged 100+ miles/day on my car.

I took him to countless doctor appointments for testing and assessments to determine a diagnosis.  It was clear that he had special needs. His muscles and body did not work and move as they should. His brain processed things differently than the typical child. He had some intense sensory needs. His speech and communication were essentially non-existent. Despite all his special needs, no clear diagnosis has ever come to light.

Ethan has made progress over the years. Much of it can be attributed to Danny’s influence in his life. He has also had good therapists, teachers, and paras who have worked with him. Now, at nearly 18 years old, some pieces of his brain operate like a teenager, while other parts still live in the world of a toddler.

He needs full time supervision and hands on assistance with nearly all activities of daily living. He has a handful of sounds and hand motions that those of us familiar with him, can make out as words. He has had limited success with a speech device. He still gets frustrated as he desires to communicate verbally but his body does not want to cooperate with him. He is physically unable to write or do sign language. He loves to be social on his own terms, loves to have friends, but easily gets overwhelmed in group settings, even if it’s family or people he is familiar with.

He loves playing with legos, though he needs help putting them together as it is difficult for him to manipulate the pieces. One of his rewards for being on task this week was a new lego set.

He is able to utilize his iPad to watch movies and play games. He is also able to use face time to “talk” to people. He is unable to communicate over traditional audio only calls. He has learned how to send text messages. They are generally comprised of emojis and random letters. On his iPad he has been working on spelling out names like “mom” and “dad” as well as working on spelling out his brothers’ names.

He has a few verbal words like “no” and “dog,” (which sounds like “daw”). One of his favorite things to say is “you’re crazy.” He makes a good verbal approximation that sounds like “yo caey.” At the same time, he points at the person he’s talking to, then makes the “crazy” sign by pointing his finger in a circular motion near his temple.

Ethan does this quite often as it’s one of the very few things he can universally communicate to people that they understand.

The students in Ethan’s special needs class at school are at many different levels of abilities and independence. This past week one of their distance learning assignments was to send an email to a teacher or another student. My mom opened Ethan’s email to help him with the assignment and discovered that he had already completed it. He had independently; 100% on his own, replied to an email from another student.

He wrote:

Hi JJ
youre crazy. I got legos.
from
ETHAN

I am stunned. Floored. This is amazing. Absolutely incredible.
Perhaps my proudest moment is the proper use of “you’re” (vs your).

Oh, sweet boy, what else are you capable of?