Our Autism Journey Did Not Begin With A Map

When a child is diagnosed with an Autism Spectrum Disorder it steers the family on an entirely different journey than they could have ever imagined.  Only another parent who has sat in a conference room hearing the words “I’m sorry, your child has Autism” could understand the feelings that go through your body… all at once… at that exact moment.  For me, it felt like time was standing still, I knew they were talking to me but I couldn’t for the life of me tell you what they were saying.  I remember feeling hot, dizzy, confused, but most of all… scared.  I was scared for myself, scared to tell my husband and family, scared for my child, and scared of what this would mean for Jaxon’s future.  

Although I was not expecting an Autism diagnosis, I had been introduced to the disorder as well as the different “avenues” of treatment through various friends with children on the spectrum.  I immediately escaped “mommy mode” and went into “researcher mode”.  I listened to what the doctors had to say, collected my “binder of useful information” and then began my interrogation.  I asked them about a gluten free/casein free diet and got the following response: “don’t try it; it has not been proven successful and it’s an unhealthy diet for children”.  I moved onto supplements… Vitamin B6, Folate, Vitamin B12, probiotics, etc., and got the following response: “you shouldn’t give those to your child, most doses are too high and unsafe, and there isn’t any proven research to back it up.”  Basically, they wanted Jaxon (who couldn’t communicate) to continue his Speech and Occupational Therapies, and for me to read a binder full of flyers such as; “Connecting with Other Moms Dealing with Autism,” “What is Autism?” and probably some other information that I skimmed over.  However, what they did not give me was any information regarding recovery.  

I asked about ABA Therapy because it was the only non-biomedical form of treatment I was familiar with, and I knew these doctors were very fond of traditional medicine.  I explained that we had been going to Speech and Occupational Therapy for nearly 10 months and Jaxon still could not communicate, which in turn led to horrible tantrums.  I was told that he was a high functioning child and didn’t qualify for ABA, so yet again, I felt like I had been given a destination but no map.  It was at this moment that I knew doing “more of the same” was not going to be good enough.  Autism was going to be our journey, not our destination, and I would make it my mission to get Jaxon from point A to point B.  

The next thing I remember was calling my husband (who is in the military and was at a training course in another state for the next 2 months) and telling him that Jaxon was just diagnosed with Autism.  His questions came streaming in faster than I could even process them.  At some point I told him that we would have to talk later and got off the phone.  I recall holding back my tears and emotions for quite some time.  Eventually… later that night, I gave in and cried myself to sleep.  Although it seems like just yesterday, that day was nearly five years ago.  I look forward to sharing our journey (highs, lows, and in- betweens) with all of you in my upcoming blog posts.    

 

About the Author

My name is Dr. Jill Tschikof. I am the mother of two, and a military spouse.  We have had struggles and successes raising a child with Autism while serving in the military and I hope that my future stories will act as a form of guidance for others navigating this same path.  You can find my personal blog at www.autismdeal.com, and I hope that you will email me if you have any questions.

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