Our long awaited visit to Thoughtful House

Last week, we made our long awaited trip to Austin to go to Thoughtful House. We saw Lucas Ramirez for two hours, then had an hour follow up with the nutritionist. We had been anticipating this visit for such a long time. My parents travelled down with us so they could help watch the girls while we had our appointments with Josh. We could not have done it without them and we feel blessed to have their support!

A few weeks ago, we had sent off a stool sample for analyis and got the results back a few days before our appointment. It showed a high level of bad bacteria as well as strep in his digestive system. The lab also tested for which antibiotics and natural remedies the strains of bacteria were sensitive and resistant to.

During our visit with Lucas, we went through Josh's medical history, all lab work as well as our current assessment of his behaviors. I had completed these assessments back in July as well when we started processing paperwork to go to Thoughtful House. It was nice to see how in just two months there were areas I had previously categorized Josh as moderate-to-severe that I now categorize as slight-to-moderate.

Our action plan is to treat the bacterial and strep infections in Josh's system, adjust his supplements we had started with the nutritionist here in Dallas, and follow up in a few months. One of the things that I loved about Lucas was that he offered us tips on handling behavioral issues with Josh. Since he has a son with autism, he had been through self-injury and severe tantrums. Josh threw a huge fit in his office and he was great in giving us suggestions on handling it, as we were emotionally attached to the situation, and he wasn't. I have often wondered how to tell the difference when Josh was hitting his head into the wall or floor because he was in pain vs. to get attention from me.

He was great to talk to and also corrected me in saying sorry to Josh when he didn't want the snack I had for him. He pointed out that I didn't do anything wrong and by apologizing to Josh, I was implying to him that I did something wrong. We ask him to say sorry for hitting his sister (doing something wrong), so when I say sorry, he'll take it that I did something wrong. Seems obvious, but following in generations of apologizers in my mother's family (sorry,mom!), "sorry" is a word that flows out of my mouth all too frequently. This makes perfect sense because Josh is extremely literal. In the car, I had to hit my brakes suddenly and the motion made Josh scream. I said, "Sorry, Josh." Quite often, when I hit the brakes suddenly, he'll scream, then say, "Sorry, Josh." That was what I taught him. So, it was good that things like this were pointed out to me. It makes sense.

As we started all our assessments and treatments earlier this year, I expressed a feeling that we were somewhere in the middle of the typical world and the autism world. Many ASD kids are far worse off than Josh. Often, in ABA therapy, I'm told by other parents how lucky we are that Josh is verbal. There is this feeling of guilt being around other parents who covet the simple words coming from Josh's mouth. My parents got to see that on our visit. While they were in the waiting room with the girls, they saw many kids coming and going and visited with some of the families. They had tears in their eyes as they told me about some of the kids they met with much more severe symptoms and understood what I meant.

I'm in a different place now emotionally. I think I've gone through my phases of grief, or at least the initial round. August was my month to be angry and depressed, but September has been my month of acceptance. I feel like we are coming around to seeing more of what Josh can do rather than what he cannot. We are learning to be patient and compassionate rather than selfish (never-ending work to do here). We are seeing the blessings that have come from this. While we are doing everything we reasonably can for Josh, I accept that there is no "cure" and he may never be typical. However, he has overcome so much already and I am choosing to move forward without an outside benchmark of his success. He has a great sense of humor, an incredible memory, a smile to die for, and is working so hard to do the right thing. At two, I think he's worked hard to overcome so much.

I have been reading Ten Things Every Child with Autism Wishes You Knew. It is written so well and really helps to bring out compassion for Josh rather than frustration. I really think this book has helped me come around more on focusing my efforts on just loving, supporting, and accepting Josh. I begin each day with a prayer for patience, strength and love. One day at a time.