What it’s like

Describing what it is like to be a parent of a child or children with autism is a difficult task.  It is at the same time heartbreaking and inspiring, exhausting and motivating, restricting and enlarging.  In every sense though, it is challenging.  I have spoken with parents who have said that autism has taught them so much that they would not change it if they could.  We are not those parents.  I think I can speak for my wife when I say that if we could make it so that our boys did not have to go through life with these challenges, we would do it in a heartbeat, both for ourselves and our boys.  Let there be no illusions about raising special-needs kids.  It is tough.  That is not to say that it is the only parenting challenge out there that is heart-wrenching and difficult and there are challenges that other people face for which I would not wish to trade.  Life is not meant to be easy and we all are given the opportunities to learn the lessons that we need to learn as individuals and as families.  I believe that.  Laurie and I have learned incredible lessons through this journey and we continue learning–usually the hard way.  That being said, we couldn’t love our boys any more–autistic or no.  They have touched our lives in ways that could never have happened if they didn’t have these challenges.  They have changed us.  Especially now that we have been able to connect with them through writing, we have been able to truly see them for what they are on the inside, not just what is apparent from the outside.  Both Aaron and Austin are significantly affected by the disorder.  You wouldn’t know it by reading what they write because when they type, they don’t sound autistic.  Indeed, and for whatever that means, they are not “autistic” on the inside.  We can now have pretty normal, back-and-forth, written conversations with both of them, which is an amazing blessing.  They can even type conversations with each other, which has been pretty eye-opening.  They are definitely typical siblings.

Aaron has very limited verbal skills.  He can answer simple questions and can tell us what he wants.  He can use full sentences but often still needs prompts.  But, he cannot express verbally what he is feeling or worried about or what he wants to do with his life in a broader sense.  It is only when he started typing that his world opened up to us.  He still has a lot of anxiety and some OCD and an occasional aggressive tantrum.  Thankfully, that is improving with time.

Austin is completely non-verbal, and really is ineffective at sign language, PECS and other means of communication other than very basic needs.  Yet, he writes beautifully and has an incredible creative mind.  And still, Austin is very challenging with a lot of negative behaviors including frequent severe aggressive tantrums, disabling OCD, and overwhelming anxiety.  We are still trying to find answers for many of those problems.  Over the years, we have tried and continue to try many things including ABA, dietary interventions, supplements and medications but it continues to be a struggle.  The purpose of telling all of that is not to expose their weaknesses but to help the readers of this blog who may be in similar circumstances understand that in spite of those difficulties, we have still been able to break through some of those barriers and help them find their true voices.  Hopefully, that will give some of you the hope, courage and perseverance to do the same.

Bryan Jepson

About author

Bryan Jepson

"Autism dad"--father of two children with autism, Aaron and Austin. Author Physician  Advocate for intensive autism treatment but also for helping our kids find their "voice"--their contribution--regardless of the severity of their disability.    Read my blog, including posts from my amazing kids, Aaron and Austin. Here is my latest book, a novel about a family's challenges in raising their non-verbal autistic son as they navigate through the world of diagnosis, treatment and helping him to find his place in the world.  Learn more here.

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  1. REPLY

    Katie El says

    Bryan-Thank you for sharing this blog about your family and your boys. I look forward to reading more entries. My husband and I fully understand the difficulties, joys, etc. that come with raising a special-needs child as our youngest son has autism. Isaac, much like your son Aaron, is limited verbal and recently started typing full words on whatever he could type them into. It is very exciting and we hope that like Aaron, Isaac can progress to expressing him self further. I wanted to know what type of app Aaron uses on the Ipad to type. We have both android tablet and Ipad at home, and we are wanting to have options available for Isaac to use. I really enjoyed Aaron’s light the world video. Thank you so much for sharing with all of us.

    • REPLY

      Bryan Jepson says

      Hi Katie
      Thanks for the comment. I’m excited to hear that Isaac is starting to type. Hopefully that will be the first step toward communication for him. We just use a Microsoft Word app for our boys to type on– just a standard word processing app.

  2. REPLY

    Jodie Meredith says

    Hello Bryan. I am in Utah and have 2 sons ages 13 and 11 who are spectrum kids. I am struggling and have been for some time. I am reading a book that you are the doctor in, “A Child’s Journey out of Autism.” It is very good, but I’d like some help for my two sons and have no idea where to turn or what to do. I just keep living in a functioning life and hope daily that things will get better. Do you know of some places, and/or people I could turn to in Utah? I live in Utah Valley.

    • REPLY

      Bryan Jepson says

      Hi Jodie,I understand firsthand how difficult it is to raise children on the spectrum and how discouraging it can be. I haven’t lived in Utah for 12 years so I’m not sure what resources are there now. Other local parents are always a good starting place but I’d also look at the Utah Autism society. I don’t know any doctors in Utah that are doing biomedical treatments but you can look on https://www.medmaps.org/clinician-directory/ for doctors elsewhere. https://tacanow.org is another resource that might help you with some ideas.

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