What it feels like

Lately I have been so frustrated. Life seems to be conspiring against me. It seems like I get things going really well then one or more of the things I have set into place to help myself, Christian, and the rest of my family falls away. If someone had told me 6 years ago that my life would look like it does today I don't know how I would have reacted. I probably would have laughed at them. I probably should have cried.

I found out 6 years ago that Christian has autism. I knew before then that there was something going on that hadn't been discovered yet. I don't know why autism had never been discussed before, looking back there were so many warning signs. I remember very clearly when someone first mentioned that Christian might have autism. I looked it up and read all the possible signs for autism and a sinking feeling started in my stomach. Then the school did their assessment and came up with the conclusion that is was "highly likely" that Christian had autism.

Then we took him in for an official assessment. I  wasn't prepared for what it would feel like to get the official diagnosis. The results came back as:
High-functioning autism
Childhood bipolar
ADHD
I felt like the rug had been pulled out from under me. I felt like all of my dreams for my child, my first child, had died. I cried, I was angry, I didn't know what this meant for him, for me, for my family. What were we supposed to do now?

But that was where I got stuck.... for a long time. What are we supposed to do now? No one seemed to be able to answer this question for me. It was depressing. I would do everything I was told to do. I searched for answers, treatments, help. But either the help wasn't available in my area, or the providers were so busy they weren't taking any more patients. I would like to say that things have changed, that there are more providers available, that there are more things out there to help. And there are, but often they aren't available at the same time. Either they aren't covered by insurance or they are too far away.

Wendell and I have discussed in the past how we could do more, spend more time and money on treatments if Christian was our only child. But where do you draw the line? How much do my girls need to give up so Christian can go here, there and everywhere? They already sacrifice so much.

So the struggle continues....

This isn't what I signed up for

"I can't handle this anymore."
"Why is this happening to us?"
"What are we going to do?"
"This isn't what I signed up for."
"How can we keep going on this way?"

These and many other thoughts go through my head on a daily basis. Why does my only son have all of these problems? What else can I try to stop it? Who else should I call? Maybe there's something we haven't tried yet.

On days when his school calls and they tell me he has been put in seclusion, or when we are restraining him at home so he won't hurt himself or others. Why is this happening to my family? I wish I knew the answers to these questions. I wish I had a magic wand. I wish I could go to sleep and wake up when it was all over.

Today he got upset at church and hit another teenager with his shoe. WHY?!?!? Why does he do that? A couple of days ago he got mad at school and broke the legs off a table. WHY?!?!? What have we done to deserve this?

I am just tired.... I am so tired.

But, he has come so far. This past year has been a nightmare. Since he turned 13 a year ago his whole life has been crazy. I swear his birthday is a major trigger in his life. When he turned 12, life was difficult, when he turned 13 it was like a devil was let loose inside of him. This year has been a roller coaster. Between the major tantrum episodes, hospital and residential treatment stays, and restraining him up to 3 times a day some weeks, I felt like we may not be able to keep him in our home. But then things started to change. We were able to get him into a good nuerofeedback routine, and his ABA therapy really started to show results. Once he was accepted into Spectrum Academy (an autism spectrum school) things started to calm down. He still had problems, he still has problems. We still have a long way to go. But one day at a time we are making things work.

The past few weeks have been especially hard. He has been without his nuerofeedback for 3 weeks now, he's been in brain balance for 5 weeks now (they say they usually hit their first rough patch at week 4), and he had a birthday which ALWAYS makes him act out. So things have been hard, really hard. But I keep trying to keep perspective about where we are and where we have been.

Just keep breathing, just keep breathing....

My boy turns 14!

Today our son turns 14. This is a major event in our lives. He survived 14 years! Better yet, we survived 14 years!!! There were days I wondered if anyone would survive. Maybe I should start from the beginning so you will understand.

In the spring of 2001 I became pregnant. My husband and I had already had a miscarriage, so I was very excited to be expecting again. So I was pregnant, and sick, very, very, sick. I had morning sickness that lasted all day. I would throw up multiple times a day. This lasted months. Then the heartburn started. So now on top of being constantly nauseous, I got major heartburn for the last trimester. Finally my due date came!! My water broke at midnight on my due date and we went to the hospital. After a few hours of labor that darn heartburn came back and made me throw up.... and everything STOPPED! For a few hours we waited and then they finally decided to give me pitocin  and get things started again. After a total of 19 hours of labor and then 3 hours of pushing, they decided to try the vacuum suction and failed twice to get my son to decide to leave the birth canal. So off to emergency C-section we went. about 20 minutes later we had a baby! Yes, it was a traumatic, and his birth was traumatic. I love my son, but I often joke that he has been trouble since conception.

He spent his first year of life crying and not sleeping. We finally decided he had a sensitive tummy and were able to help with that. About the time he turned 18 months old we started noticing things were off. He had hit all of his developmental milestones up until then on time or early, but then he started getting picky about his food, didn't start developing language like other kids his age, and when he would get upset, he would bang his head on the floor. That was my first BIG sign. By the time he was 2 1/2 I found a preschool that would take him early to see if socialization would help him with his anger. When he was 4 he went to a preschool and got kicked out because he would pull up the vinyl flooring when he got mad.

Then elementary school started. Kindergarten was ok, and so was 1st grade. He had his bumps, but his teachers were amazing and he did well. 2nd grade was a totally different story. He threw a major tantrum which prompted a meeting with the principal and then another major tantrum (where the principal went against every request I had made in the meeting just two days before). This lead me to pull my son from school and home school him. We did that for the rest of the school year and then he was about to get an amazing 3rd grade teacher who made it so he felt safe and comfortable at school.

Turning his 2nd and 3rd grade years we did have him diagnosed as having high functioning autism, ADHD, and childhood bi-polar. He also spent time at UNI (University of Utah Neuropsychiatric Unit) twice. The first time he was there for 10 days, and the second time it was only 6 days.

Then we moved, then next two years were a combination of frustration and disappointment. We would feel like we were getting a step ahead just to fall three steps back. The spring of 2015 was very difficult with his anger and we ended up putting him in a residential treatment center where he stayed for about 6 weeks. When Christian was about to enter 6th grade I worried about bullying (which he had been experiencing) and the thought of him going to middle school (where kids are just mean). So, I decided to home school again. This time all of my kids came home to be schooled. We did this for two years. When we started the third year, on a whim I decided to put Christian's name in the lottery for an autism spectrum school and he got in!! This was a big change for us. Home schooling had been good for him, but to be back on a schedule and have someone other than mom in charge was a good change. The first few weeks were really rough, tantrum after tantrum at school. But once he settled into a routine things got better.

It's been 6 months since he started at the school and things are getting better. We also have ABA treatment and he attends a peer group twice a week. This ABA therapists go to school with him and help him deal with situations that arise. We just started the Brain Balance program and he has shown a lot of progress so far. Sundays are still really difficult and he is not a fan of all the restrictions he is now subject to, but I try to point out all of the positive things that are happening and he is willing to put up with it.

He's a really great kid. He is so kind, thoughtful, and helpful when he is in control of himself. He is so inquisitive and loves to learn. He has a great sense of humor and can retell any story from memory.

Well, that's the short very of my son's story. Maybe now you get a little bit of a sense of why I worried that we may survive this long. With every hard day I try to remember my little boy, and I still see him when he's sleeping. When all is peaceful and right in the world.