Goals and emotions

When I don't blog or e-mail, I am either fighting to keep my head above water, or I'm depressed and don't want to write. For months, it's been both. I have always felt that I need to avoid sharing the difficult side of things. I am a positive person and I always hope for the best, but that just isn't always reality. 2009 was a long year. It felt like three years.

Autism is exhausting, lonely, expensive, alienating and disheartening at times. I have not had a full night of sleep in 1 1/2 years. I am not the same person I was a year ago. Autism consumes my life. I feel like a monster sometimes, trying to figure out what happened to my son and what I can do to fix it. Last week, I found a video of Josh at 15 months. Someone was playing guitar hero. Josh was watching it, clapping, dancing along and really interacting with us. My mom asked me if that video made me sad, and it actually made me happy. I have wondered if days like that ever existed, so it was nice to find that video and validate that things really were "normal" at some point. Now, we have many sleepless nights, with a miserable son, crying, screaming, itching uncontrollably and he can't tell us what is wrong. I spend time each day racking my brain to figure out what new food he ate, what chemical he came in contact with, or what changes might have occurred to bother him. He can't tell us his stomach hurts, or that he has a headache, or that the light is hurting his eyes. The best way I can explain it is like being a first-time parent figuring out your baby's first ear infection or tooth coming in. You just have a crying baby, not sleeping at night and you have to figure out why.

My friendships have changed. Some friends don't know how to approach the subject or are obviously uncomfortable discussing our situation. Some see just enough of the 90% of the time happy child who is such a charmer with his smile and non-stop soccer dribbling. They think I'm crazy. Some friends have the perfect balance of asking questions (I try to spare details) and empathy. Some friends I have just lost touch with in all the craziness. Some people we've never told. There are several families at church that we have chatted with after Mass for years, but don't know them well enough for us to discuss what we've been going through. I wonder what they think when they ask how old he is now, and then try to have a conversation with him when he just repeats every third word he hears. I have made many new friends as well. I have met many moms of autistic children and they have been so important in keeping me going. I don't have to tell them how much it hurts to watch my child suffer at night and head-bang during the day. One I met a few weeks ago is the reason I am writing all this. She mentioned how all these feelings are here, but we're stuck feeling like we have to put on a happy face and cover how hard it is to deal with, or worry about offending those around us by talking about it. All my friendships have their place and I'm thankful to be blessed with friends. I think I just also realize that I can't bottle up all my feelings and put the weight of our world on my shoulders. Struggling to deal with autism doesn't mean we don't love our kids or don't see the good in them. It just means we're human and any parent knows it hurts more to see your child suffer than to suffer yourself.

I have spent the last month figuring out what I hope for 2010 and what are reasonable goals for the year. Here's what I have:

1. Get counseling. I need help dealing with my feelings and taking care of myself so I can remain functional for my husband and kids. I've been talking about this for months, but haven't been able to make the call. Now it's a goal, so it can only be measured by doing it or not doing it.
2. Be realistic. Rome wasn't built in a day. Josh's body didn't shut down in a day either. We have a long journey ahead of us and I praise God for the amazing progress we have seen in Josh. If Josh progresses in his lab work and assessments, then we've progressed.
3. Take the next step in Josh's dietary interventions. We've been gluten, casien and soy free for 9 months now, with limited sugar intake. Yeast overgrowth in Josh's digestive tract has been a continual problem. His doctor suggested the SCD (specific carbohydrate diet) and we started that over the weekend with the guidance of his nutritionist. Ugh. That will be the next blog post.
4. Make time for myself. I actually feel a desire to exercise! I have so much frustration built up inside of me and need a way to deal with stress. I need to make time for exercising. I need to make time to blog, email and return a few phone calls.
5. Appreciate the small victories. You might not think this is measurable, but I keep a rating of Josh's behaviors and physical well-being each day. I added a section for victories and milestones to remind myself to find the good parts too.

Sad that it took a month to come up with 5 goals, but these will keep me busy for the year. I had a follow-up appointment with Thoughtful House the last week of January. Between our treatment plan from that appointment and the push to implement SCD for Josh, my rear has been officially kicked back into gear.