I found this post on one of my social media feeds, and it resonated with me so deeply that I felt the need to not only repost it, but I wanted to take a while and reflect on it, and write about this exact topic. I’m going to give you an quick overview of his development, deficits and needs, and then talk about the impact this has on daily life.

I have a 6-year old son named Felix. He was diagnosed with Autism level 3, at age 2. Here are a few details about his current development:

• He started walking independently at 3 1/2 years old. He’s still pretty clumsy, and falls often like a toddler would. He is not steady on uneven surfaces, and is not safe around stairs.
• He does not chew his food, so his dad and I have to make safe foods and feed him because self-feeding would be dangerous – we don’t want Felix trying to eat things he shouldn’t.
• Felix is entirely non-verbal. He will moan and grunt, sometimes babble single syllables, but no speech as of yet. Communication devices have been unsuccessful so far. He does understand a few simple verbal commands, but doesn’t always do as told (normal for a child, I know).
• He has absolutely no sense of danger. He wants to play with car tires, and would love more than anything to run out into traffic. He will climb things and do dangerous things in our home too, so he needs constant supervision to keep him safe.
• He is fully in diapers with no current progress toward toilet training.
• He has a rotating schedule of different therapies: physical, occupational, speech and feeding. Also horse therapy!
• He has a full care team of therapists and several medical specialists.
• About 2-3 years ago we got genetic testing done and Felix was found to have Dup15q. “Dup15q syndrome is a neurodevelopmental disorder characterized by having an extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region in combination with a number of symptoms that may include hypotonia and motor delays, intellectual disability, autism spectrum disorder (ASD), and epilepsy, including infantile spasms.” – https://dup15q.org/ This did not come from the family, as his dad and I have both been tested too.
• In April, Felix started having epileptic seizures, so he’s now being regularly seen by a neurologist and is on anti-epileptic medication.
• He co-sleeps with me and with his dad in our respective homes. His sleep issues have been so persistent his entire life that it’s easier to just help him get back to sleep in the middle of the night (or more recently, recognize seizures) if he’s right there with one or the other of us overnight.

Felix is developmentally and intellectually about 1/2 of his physical age. So right now he behaves about like a 3 year old, but still with a few delays even for that age. However, his delays and deficits don’t define how amazing he is. He is making amazing progress every single day, showing us just how capable and perfect he is, regardless of his challenges.

• Felix is very affectionate, and loves to give us hugs and kisses all the time. He’s very snuggly, too.
• He absolutely loves it when we read his favorite books to him. Or sometimes he will just sit quietly and look through them himself.
• He also loves when we sing to him, or sing along with music.
• He enjoys a very specific set of toys, which we often replace so he has what he likes.
• Felix has very specific children’s shows he likes to watch on TV, none of which are mainstream. He also likes to watch Billy Strings playing his guitar on YouTube.
• He enjoys playing with our pets, but can be overly rough. Luckily our pets have grown with him, and understand what their own limits are. They know how to interact with him safely (supervised of course), and they know how to go away when they’ve had enough.
• Felix loves to run around outside, but isn’t really interested in playground equipment. He’d just rather run in a field or a large parking lot (always supervised).

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So now that you know a bit of the ins and outs of what care is like for Felix, I will talk about how this has impacted me.

When I got pregnant, his dad and I talked about what we wanted for Felix. We wanted him to learn music. We wanted to travel with him. We wanted him to have a good relationship with his grandmas and siblings, and any other family that wanted to be near. We were looking forward to school events, and I even talked about joining the PTA and being a consistent chaperone for field trips, and volunteer within the school district. We knew Felix would basically be an only child since he’s so much younger than any of his siblings, so we were looking forward to having all of those experiences with 1 child versus the lives we had both had with multiple children before. We knew we would foster and nurture whatever his interests were, and basically spoil the crap out of him.

When he started showing early signs of delays, we figured we’d get him extra help and get him on track. Perhaps not on the level with his peers, but at least to a point where he’d be maybe a year or two behind.

And as time went on, and it became clear he would not be like his peers at all, it got harder. I can’t speak for his dad’s experience, but I know I went through a period of mourning. Not for Felix, because he’s happy and knows no different. I was mourning for my vision. I wanted Felix to be able to experiences life in the way I had imagined – with school trips, friends, activities, traveling, etc. And that’s just not who Felix is. I had to let go of all of those dreams and accept the reality. The reality is not bad, don’t get me wrong. It’s just different.

Instead of school trips and friends, we have days at home, trips to the park or just even shopping, lots of therapy and doctors appointments, and lots of hands-on care regardless of location. Instead of friends Felix’s age, we make friends with his care team. All the therapists and specialists he has seen, and continues to see, are great people.

Sadly, much of our family has chosen not to be involved at all. It’s truly their loss. Felix is amazing and they don’t know what they’ve given up by not getting to know him.

As of now, his dad and I are the only two people on the planet who know how to properly care for Felix. We are the only two who know all of his needs, who can read his non-verbal cues, who know his schedule and expectations, who can bathe and feed him, change his diapers, attend all of his appointments, and who will sleep next to him throughout the night to help him sleep and monitor for seizures, who can give him his meds, and make sure he’s happy and entertained and shown love as he needs it. It’s a full-time, 24 hour per day responsibility. He really cannot be unsupervised for more than a few seconds at any point throughout the day. Everything I do, everywhere I go, I look at the world through the lens of “is Felix going to be safe and comfortable here, and if not, how can we accommodate him?” This goes for stores, potential new homes if we choose to move, visiting friends’ homes, parks, etc.

I have tried to find child care and explain his needs. The couple of people who have shown interest in helping stop answering after a while, as the list of needs goes on. Even licensed respite providers have blown me off. Family members haven’t stepped up, and keep busy in their own lives. Public school seems downright dangerous for Felix for many reasons I won’t go into (imagine a toddler loose in an elementary school, with no sense of danger).

So when I saw that little phrase, that meme on social media that started this post, I felt that to my very core. What would happen if something happened to me and/or Felix’s dad? How would Felix’s life go on? Would he still feel loved and cared for? Who would be in charge of his care, and would they do the things that Felix needs, or dismiss things because they aren’t “normal” or socially acceptable? Would he continue to be treated with respect and dignity? I’m not afraid of death, but I’m afraid of what would happen to my special little boy if something happened to me. He deserves the best life can offer him, and his dad and I do the best we can to give him everything we can.

I don’t often share photos of Felix online anymore due to his personal safety and privacy. But this feels like the right place to share just one to show just how much of a light he is in my life, regardless of the hardships. His smile makes everything worth it, and I love him endlessly!