“Expect the unexpected. Be prepared to advocate for a child who appears typical on the outside.”<\/em><\/p>\n The other boys tolerate him, but do become easily annoyed. As they have gotten older, this has improved with each year. Now that our oldest 2 are in college, our typical son has developed much increased empathy for how difficult it may be for our affected son to navigate college.<\/p>\n We love to travel. Mostly in the US to do and see things more than just to relax. We spend time with lists of extended family.<\/p>\n The unknown future is the most difficult aspect for us. We have never quite known how much independence to expect. But for the most part, we have been pleasantly surprised.<\/p>\n He is very outgoing and extremely creative. His \u201climitations\u201d often serve as an advantage when he does not realize that others may be nervous or self-conscious, he just charges ahead.<\/p>\n We feel our situation is very unique\u2014one child with ASD and 2 without. His gene mutation is rare and we feel it\u2019s important for future understanding as well as to finding the few others who have a similar experience.<\/p>\n His gene mutation is rare, so participating seems important for the understanding of its impacts.<\/p>\n Not much yet. Other than it seems relatively rare.<\/p>\n Expect the unexpected. Be prepared to advocate for a child who appears typical on the outside.<\/p>\n How\/why this gene mutation occurs.<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" By: Rebecca, Parent of Jacob, who has a KDM6B genetic change “Expect the unexpected. Be prepared to advocate for a child who appears typical on the outside.” What is your child\u2019s relationship like with his\/her siblings? The other boys tolerate him, but do become easily annoyed. As they have gotten older, this has improved with […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":522,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6100"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=6100"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6100\/revisions"}],"predecessor-version":[{"id":6101,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6100\/revisions\/6101"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/522"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=6100"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}What is your child\u2019s relationship like with his\/her siblings?<\/h3>\n
What does your family do for fun?<\/h3>\n
Tell us about the biggest hardship your family faces.<\/h3>\n
What about your child puts a smile on your face?<\/h3>\n
What motivates you to participate in research?<\/h3>\n
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight<\/span> (16p11.2, 1q21.1, or single gene changes)?<\/h3>\n
What have you learned about your child\u2019s condition from other families?<\/h3>\n
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/h3>\n
What is one question you wish researchers could answer about your child\u2019s genetic change?<\/h3>\n