We shared Jacob’s autism diagnosis a year ago on social media. We weren’t looking for sympathy. We weren’t looking for attention. We weren’t looking for people to pity us. Instead, we decided to share our story with the hopes that it might help others walking this journey also. We hoped that our choice to be transparent about pursuing non-traditional approaches like biomedical treatment would allow others to be more open-minded about treating Autism on a medical level, not just from a behavioral approach. We hoped that when other caretakers were tired, overwhelmed, anxious and scared that they could reach out and feel heard instead of feeling judged.
The last year has been comforting.
So many friends and family reached out this last year to say all the right things. They shared messages of their struggles with Autism. They sent us messages of the circumstances in their lives that they too prayed for change. They sent us stories of hope and resilience. They let us know that if we ever needed anything, they were just a phone call away. Our people pulled through. And even if I didn’t respond to all the messages, be assured I read every single one. Thank you for reaching out.
The last year has been tough.
I shared my frustrations with the lack of Jacob’s speech progress this last year. I longed to hear him use words in a functional way. It was especially frustrating because we were doing all the things others were doing and they were getting speech from their kids on the spectrum. While I knew that our visit to Dr. Jerry in Orlando was our first step and not the solution to our struggles with Autism, I had hoped that the progress would come faster. It’s hard to be patient when you feel like you’re on a timeline. This last year has forced me to utilize more patience than ever before.
But more than anything, this last year has shown me the power of community, the assurance of prayer, the hope that stands firm even in the scariest of circumstances and that things do change from year to year.
What are the biggest differences we see in Jacob when compared to last year?
Juan says he thinks Jacob’s overall awareness has increased. He is more alert to what is going on around him. In the last month, we’ve noticed a surge in mimicing behaviors unlike we’ve ever seen him do. He can touch his head, point out his eyes and even dance in the kitchen if he sees us doing those things. His eye contact is more improved and he is showing us on a consistent basis that he understands simple commands like, “let’s go” and “come here.”
I agree with Juan. I too, see improvements in all the right areas. Jacob has had a recent language burst. He is trying his hardest to say words on command. Sometimes he gets it and sometimes he doesn’t, but he’s definitely trying. ABA Therapy seems to be going well also. In our most recent parent meeting, we were able to observe Jacob in action. We saw first-hand how he responds appropriately to his behavior technician. Sometimes he masters behavioral goals in a matter of days, and sometimes even hours. They love him there and we can’t blame them.
What a difference a year makes. There are still hard days and moments, but given the progress we’ve seen Jacob make the last 12 months we are hopeful that everything we said we wanted Jacob to achieve is possible. A year ago I worried if he would make friends and be a friend. I worried about the level of educational access he would be granted. I stayed awake at night thinking about the level of care Jacob might need for the rest of his life and it terrified me. I still worry about those things, but not as often. Juan assures me that everything will be ok.
We are planning a trip to Chicago in March 2020 to visit another MAPS doctor. We’ve been on her waitlist for about a year. I’m excited to see what a difference the next year makes. I took this online parent questionnaire to help me set a baseline at our one year anniversary of the diagnosis. Jacob’s score last year was 134. This year his score is 115. Crossing my fingers that next year the score will be even lower.
Signed with Love, Kat.