After two years of growing concerns, Jude was diagnosed with Autism Spectrum Disorder last October. (You can read my bio if you you are unfamiliar with our family’s story.) This diagnosis gave my wife and me an immediate sense of relief. We kept saying to each other, “At least now we know what we are up against.” As the English proverb goes, “Better the devil you know than the devil you don’t know.” Now one year into this journey, I want to record where we’ve been and look ahead to where we are going.
Over the past year, we have experimented with so many treatments and therapies that I’ve lost count. While a great number of recommendations helped Jude only minimally if at all, others have made some improvements in Jude’s language, social skills, and behaviors. Our greatest successes have come with dietary changes and supplements. Some sensory-seeking behavior and repetitive behaviors (like dropping rocks directly in front of his face or shaking his head rapidly) have been reduced, if not ended all together. Socially, we get the chance to look straight into his bright eyes much more now than ever before, and he consistently seeks us out for interactive playtime, whereas before we often felt like inanimate props in his own impenetrable world. Although we still want to see him engage with other kids more, overall he is more present today than he was a year ago. The fog he was living in seems to have begun to lift.
For us, the first red flags raised were in the area of language. By two years old, he did not speak any intelligible words, and he understood no more than ten words consistently. Today, Jude understands a good portion of what we say, although exactly how much is hard to determine, and he has also started using some words in play. He is like a non-stop jukebox of Veggie Tales songs. However, he still does not utilize language to communicate his needs or desires.
As we look forward, there are a few areas that we would like to ask readers to pray for:
Sleep. As is typical of children on the spectrum, Jude sleeps very poorly. We have experimented in numerous ways but have not achieved consistent sleep. Needless to say, lack of sleep inhibits Jude’s progress in learning social and language skills, and furthermore, over three and a half years, poor sleep wears on nerves and relationships.
Diet/Biomedical. We have made significant progress in this area, but there remains much needed wisdom to customize his diet and supplements even further. Thankfully, we have an appointment this year with a pediatrician who specializes in Autism. We hope that with her help we can fine tune what we are already doing as well as move forward with some physician-directed changes and treatments as well.
Therapies. Good sleep and the right diet only prepare Jude’s mind and body for learning. Learning actually takes place in therapy. Over the past year a psychologist and a speech therapist taught us to do TEACCH and play-based speech therapies on our own, and just this week we started utilizing a grant to hire therapy helpers. We hope to significantly increase the amount of time Jude has someone “in his face” over the next few months, but we know that this transition will challenge and frustrate him in the short-term.
Long-term. In only two more years, Jude will start kindergarten, and while we are thankful for the great number of educational options available for him, we are equally intimidated by these choices. Also, ultimately, our family desires to serve God again on the international mission field. Please pray for us as we seek God’s guidance in these big choices and seek to balance faithfulness both as parents and as those who are called to gospel ministry.