Over the weekend my husband and I had some friends over to visit. A couple of these friends had met Jake once, and the other couple were meeting Jake for the first time
Now that I understand Jake’s condition (severe autism) being mainly full body apraxia explains so much about things I didn’t understand regarding how Jake responds to social situations. He LOVES other people, loves hearing “new stories”, but his anxiety levels definitely increase in new group situations because of his body’s inability to respond as he knows is typically expected.
Since I have always had to guess/assume how Jake was feeling during his younger years, I was really excited to have this conversation.
Conversation About New Friends
Mom(Tara/Me): So tell me your thoughts about this weekend, meeting new friends…
Jake: Hard. Interest in talking, but can’t.
Mom: So, I know you’re eager – do you remember the description of the class we signed up for? The one we start on June 21st in a couple of weeks?
Jake: Most of it is about typing independently.
Mom: Yes, and/or using your letter board independently. Giving us tools/ideas for practicing.
Jake: Have a learning helper is having tool I need. Dealing my autism is hard on so many levels.
Mom: I realize there are many levels. Emotions, your listening to every detail and getting used to new voices, concentration challenges, but ultimately to be able to communicate to anyone you want in a variety of situations would be fun, don’t you think?
Jake: Eager to dream to have abilities (puts his hands on both sides of his head and yells “DON’T!”). Hard, always too challenging, always needing your help. Most I can dream only really life isn’t getting any easier. It is having more challenges than before.
Mom: (I’m chucking) Welcome to the world of adulthood. It’s funny, cause kids think adults have things all figured out, but when you become and adult you realize no one has it all figured out.
Jake: Have worst time always hoping things reality will get easier.
Mom: Yeah, I understand exactly what you’re saying. Sometimes it feels like things do get a little easier, then they get challenging again. There’s always new challenges popping up! I think, the “easier” part really comes when we learn to be easier on ourselves with how we are handling our life’s challenges. Cause getting harder on ourselves just seems to make things more tense and stressful.
Jake: Not others eager to interest in my challenges having autism since they talk good and I don’t. Dealing life got good talking skills is different having ability so important easier to interest each other something.
Mom: You have so much to say and you have some talking skills to be grateful for, and those might grow. Your letter board skills have grown BIG TIME, I feel like you’ll be able to do this without my help with practice. I fully believe that… with practice, time, will, and the Grace of God.
Jake: Hard to imagine. Only time will tell. Better to stay truthful to myself.
Mom: I think being honest to yourself is important. Just line that truthfulness up with God’s truths. Some things we have to want for ourselves, and I don’t want to force any wants on you. I want to support you with whatever you are wanting for yourself.
Jake: Have reality most different is too maddening sometimes. Eager you see that really want have reality I can’t have. I only hard on myself about that. I eager to stop interest in wanting what I can’t have. (The 70min. timer goes off.)
Mom: I’ll end by saying there’s nothing wrong with wanting what you can have though. I think you have more in common with people who don’t have an “autism reality” than you realize. Maybe next time we could make a list of similiarities/differences? Does that sound good?
Jake: I eager to live not mad. Eager to have peace.
Mom: Good. There’s nothing I want more for you.
At the age of 22 he began expressing his very personal thoughts and feelings more fluently with me (his mom), and it was his idea to begin writing “The Story of My Life” one day. He is diagnosed with severe autism as well as intermittent explosive disorder. He has given me permission to share his story and our conversations.
Jake continually expresses his desire to “find purpose” to his life…I hope his willingness to share will help others learn about this misunderstood condition known as “autism” that has so much to teach us all.