(HBOT 9) - Living with Autism is Very Hard

I am focusing this blog on documenting Jonathan's positive behaviors and improvements (if any) throughout the day and commenting on items that we still need to work on. Sometimes I do talk about certain regressive behavior that I observe and bother me. But the idea is to track improvements because our ultimate goal if full recovery.

However, there are times when this life catches up to us and we need to vent a little. We want to scream to the world how hard living with a child with autism is, and how hard it is on us as parents and as individual people. No one can really related to us unless they have a child with this disorder. Different disorders such as Fragile X and Down Syndrome are close, but the difference is that autism spectrum disorder (including autism, ADHD, PDD-NOS, Aspergers, etc.) is brain and body poisoning and we are desperately trying to rip it out of their tiny bodies and in the process we lose track of everything else around us. Only 10% of children diagnosed with autism recover, and we are shooting to be part of that statistics. But the reality sometime hits hard.

Talking about how we feel is almost non-existent, because we need to focus on being positive if we want to win this war. Because both Javier and I are in this together, sometimes it is hard to turn to each other for support. We both find support in our friends. During the past 3+ years, our behavior as we live this agonizing life has turned some of our closest friends away. We have also separated ourselves as we have no energy to socialize and pretend to be something we are not, and have just chosen to remain close to a handful of friends. It is simply hard because living with autism is a constant nightmare and you become introvert as you don't want to talk about this all the time.

I admit that I am sick and tired of living in this world. A world where everyone pities me (us), a world where every bit of conversation is surrounding autism. A world where anyone that we interact with brings up ever detail they see in Jonathan (both positive and negative). And both Javier and I are trying to live "normal" lives as often as we can so we don't drown in this world that was not what we dreamed of. We (I, in particular) have chosen to talk to a handful number of close friends when I feel sad, so I get it off my chest and keep on going. Those people know who they are and I want to thank them for being there for me when I have needed them the most. I hope that someday I can return the favor. Our families have also been a great support, although sometimes we feel suffocated. But we know family means well and we love everyone and thank them for their support. But the truth is that I don't want to continue to live and breathe autism for the rest of my life. And when I find a new therapy that seems to work, I get excited that that is going to be our Silver Bullet. But there are no Silver Bullets. All I want is to dream that my son will be a "normal" child so I can have a "normal" life. That is the dream of every parent with an autistic child.

HBOT Day 9

Today Jonathan did not do too well at school. He was very very hyper and did not follow directions. The Therapist wrote a note mentioning that she had to prompt him frequently. His Grandmother picked him up in the afternoon and called me on my cell to tell me that he was very hyper and non-attentive. So several people noticed the same behavior.

He did well at the chamber. I was very tired and I had a headache (I have had a very bad headache for the past 24 hours due to some personal stress) and fell asleep inside the chamber while Jonathan watched videos. When we got out, Jonathan was very distracted. Did not hear anything that I was saying (e.g., put your shoes on, put your jacket on, he opened the front door even though I told him not to, etc.).

In the car, he was distracted watching a video. Daddy called and said that he was a the shopping mall and asked that we meet there. So we did. When we arrived, we put our name in the Cheesecake Factory waiting list and went in to meet up with Daddy. Daddy and Vanessa were waiting to take a picture with the Easter Bunny. Vanessa got scared, but Jonathan liked the bunny and got a cute picture with him. We then went to get them new shoes.


At the shoe store, he was very distracted, walked in circles and made lots of noises. One of the attendants was staring at him. I tried to correct the behavior, but it was hard to be on top of it and be with Vanessa as she was picking out what shoes to try on. When the attendant came to help us and measure his feet, Jonathan was very distracted and unwilling to cooperate. He would not stand straight (he almost seemed like he needed to go to the bathroom, but I knew he didn't need to go) and just wasn't listening to the commands (e.g., stand straight, put your feet on this platform, etc.). He was in his own world. I helped him get his feet measured. She brought a couple of models and we chose the one that fit him best. He did not agree or disagree, or made any comments.

We were going to stop by to see Abuita as she was working, but we were running late for our Cheesecake Factory appointment. When we arrived, they sat us immediately. We sat down in good spirits pretending to be a "normal" "happy" family. When the waitress arrived, we asked the kids what they wanted to eat and drink (although we knew already) and she took their orders. Jonathan was very edgy. He wanted pizza, and pizza. He was demanding. When bread arrived, he wanted the white bread. It was warm, so he started screaming that he wanted Daddy to blow on it. Daddy did, and Jonathan kept screaming. About 3 of these and Javier lost his temper. Then Orange Juice arrived and he was not happy because it had pulp. More screaming. Javier got upset again. Kept repeating to Jonathan not to scream and was very short and demanding back to Jonathan. It is embarrassing to be in a restaurant with a child that screams very loudly and have people around you turn and stare as they are annoyed. It became a very unpleasant situation. And reality hit. We are not "normal". We have a child that understands and communicates less than our soon to be 3 year old girl. Sometimes he behaves really well at restaurants and some other times we regret sitting at that restaurant (like tonight). And I am not sure that HBOT or anything else is going to ever "cure" him. He will get better, but this is going to be a life-long event. And I haven't come to terms with that yet. I don't want to give up. I am just tired. Like one of my best friends once told me: "siempre que llovió, paró". Which means that every time it rains, the rain eventually stops. Tomorrow will be another day.

Today, again, the media reported on Autism in Oprah's show. I recorded it. I am going to watch it now. I hope by the time Vanessa has her kids, autism is a thing of the past.