{"id":74,"date":"2022-10-16T00:51:00","date_gmt":"2022-10-16T00:51:00","guid":{"rendered":"https:\/\/prrf.org\/2023-2-18-sibling-revelry\/"},"modified":"2025-03-16T23:52:08","modified_gmt":"2025-03-16T23:52:08","slug":"2023-2-18-sibling-revelry","status":"publish","type":"post","link":"https:\/\/prrf.org\/es\/2023-2-18-sibling-revelry\/","title":{"rendered":"Juerga entre hermanos"},"content":{"rendered":"
\n

By Stephanie Brennell<\/em><\/p>\n

\u201cIf you want to know how to treat a child with special needs, look at their sibling\u2026they will show you.\u201d I have no idea who wrote this quote, but I really like the sentiment. At the same time, I hate the phrase \u201cspecial needs\u201d in terms of a specific population of people or description of my son, in particular. I get lazy and do use it because it is such a widely accepted term, but I don\u2019t like it. None of us have needs that are otherworldly. We are all unique and special in our own way.\u00a0 Those who have disabilities or learning deficits may require an extra level of support or accommodation, but whatever their needs may be \u2013 they fall within the realm of normal human interaction in a civilized society. There is no shame in possessing a disability or differing abilities, and many experts recommend using the term \u201cdisabled\u201d. I\u2019ve been pondering this issue for quite a while and haven\u2019t come up with a brilliant new way to re-phrase or re-frame things, so I\u2019ll save that endeavor for another time and move on to the bigger picture.<\/p>\n

The most unexpected and jarring news I\u2019ve ever received was delivered by a medical professional, but it was not delivered by the ophthalmologist who delicately informed us our infant son was blind. It was delivered by the ultrasound technician who nonchalantly mentioned two embryos as I was lying on the exam table at the high-risk maternal medicine center.\u00a0She thought our normal OB-GYN had already informed us, hence the reason for our evaluation that day.\u00a0In fact, we were there because I was over 35 and considered geriatric in pregnancy terms, and because I had needed an emergency c-section when our first son was born.\u00a0In any event, we were floored, and she was mortified for so casually delivering such a shock to completely unsuspecting parents.\u00a0I was stunned.\u00a0I was completely overwhelmed.\u00a0And I was beyond excited.\u00a0Twins are always best friends, right?\u00a0Don\u2019t they possess some sort of secret, mysterious, unspoken connection, or communication?\u00a0 These are things I thought to be true, and they are questions I get asked quite often.\u00a0I always dread having to answer\u2026no, not really.\u00a0Not with all twins.\u00a0Not with my twins.<\/p>\n

Sean was born with Norrie Disease and has been blind from birth.\u00a0He was also diagnosed with autism around age three and is non-verbal and severely delayed in all areas.\u00a0There is not a single, simple task that Sean is able to do on his own.\u00a0Zach is his typically developing twin.\u00a0He was born one minute before Sean.\u00a0He is thoroughly obsessed with Godzilla.\u00a0He loves to read.\u00a0 He talks on and on and on\u2026and fires off completely pointless questions all the time, such as \u201cwhat are your four least favorite sports?\u201d\u00a0For the record, I don\u2019t really like to watch any competitive sport other than swimming.\u00a0Our oldest son, Will, is going to turn ten in July.\u00a0He\u2019s entirely too smart for his own good.\u00a0He has a crush on a girl in his class named Tenley.\u00a0He wants to learn how to play the trumpet next year in fifth grade band.\u00a0My boys are all different, all special, and all actively contribute to my gray hair growth and my insomnia.<\/p>\n

One thing I\u2019ve worried about endlessly since receiving Sean\u2019s diagnoses, is whether my boys will be close as they grow up. Will and Zach, for obvious reasons, can participate fully and unassisted in endless activities, while Sean can\u2019t.\u00a0I never want them to take that for granted.\u00a0And we have recently started having those types of conversations with them.\u00a0They know, of course, that Sean is different.\u00a0They know what his disabilities are.\u00a0But what we are trying to impress upon them is that they <\/em>could have been born with disabilities, too.\u00a0I debated for a long time whether I wanted to make this precise point with them.\u00a0 I\u2019m not trying to use Sean\u2019s limitations as a weapon. I\u2019m not trying to scare his brothers.\u00a0And I\u2019m definitely not trying to paint Sean\u2019s life as a tragedy.\u00a0With their young ages, I wasn\u2019t sure if they would really comprehend what I was trying to teach them.\u00a0 But they are smart boys and they do understand.\u00a0They understand we are all unique.\u00a0They understand there are many different types of disabilities impacting many, many people in our community and around the world \u2013 but that those with limitations are not less valuable members of society.\u00a0They understand that, even if you are not born with a disability or limiting condition, you may acquire one at any point in life.\u00a0They understand they possess abilities and talents Sean does not, and never will.\u00a0 But most importantly, they understand he has gifts, too. They witness, daily, his sense of humor and his joy. They know how smart he is, and they see how quickly he learns.\u00a0They get it.\u00a0And they accept him for who he is.<\/p>\n

My three boys can\u2019t all sit down together and play a game of Uno or ride their bikes around the neighborhood chasing the ice cream truck.\u00a0But they certainly do interact with each other, and Will and Zach have found ways to entertain Sean and have fun with him.\u00a0They really light up when they see him smile and laugh.\u00a0Sean loves to sit and listen to The Lion King movie, typically two or three times in a row.\u00a0Will loves to sit and watch it with him.\u00a0Zach loves to play with Nerf guns.\u00a0When Sean hears the clicking sounds, he always reaches out for them.\u00a0Zach has learned to share and give Sean a turn holding his toy guns so he can explore their parts and functions.\u00a0Will loves to push Sean on the swing set.\u00a0All three boys love swimming in our neighborhood pool and Will likes to hold Sean and help him float on his back.\u00a0Both boys will bring Sean his favorite toys, one after another, until they figure out which he wants to play with.\u00a0They help fill up his sippy cups with drinks.\u00a0They hand him bowls of his favorite snacks \u2013 Oreo cookies, Veggie Straws, or Doritos. They understand his likes and dislikes. They understand his quirks.\u00a0They understand what makes him tick, and what makes him meltdown.\u00a0They are inclusive and they love him.<\/p>\n

I hope their soft little hearts never change.\u00a0I want Will and Zach to grow up continuously expanding their minds and loving their brother unconditionally.\u00a0It has taken a bit of strategic work on our part, as parents, to help cultivate these relationships between our three boys \u2013 but kindness comes naturally to Will and Zach, and I hope they will continue to grow and model acceptance for others.\u00a0They have been handed such an amazing gift in life.\u00a0They have been given such an amazing teacher.<\/p>\n

About the author:<\/p>\n

Stephanie Brennell is a parent and PRRF FAC Member<\/em><\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

\u201cIf you want to know how to treat a child with special needs, look at their sibling\u2026they will show you.\u201d I have no idea who wrote this quote, but I really like the sentiment. At the same time, I hate the phrase \u201cspecial needs\u201d in terms of a specific population of people or description of my son, in particular. I get lazy and do use it because it is such a widely accepted term, but I don\u2019t like it. None of us have needs that are otherworldly. We are all unique and special in our own way. <\/p>","protected":false},"author":10,"featured_media":6661,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","om_disable_all_campaigns":false,"footnotes":""},"categories":[36,46,45],"tags":[29],"class_list":{"0":"post-74","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-blog","8":"category-parent-stories","9":"category-personal-stories","10":"tag-norrie-disease"},"_links":{"self":[{"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/posts\/74","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/users\/10"}],"replies":[{"embeddable":true,"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/comments?post=74"}],"version-history":[{"count":5,"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/posts\/74\/revisions"}],"predecessor-version":[{"id":7993,"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/posts\/74\/revisions\/7993"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/media\/6661"}],"wp:attachment":[{"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/media?parent=74"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/categories?post=74"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/prrf.org\/es\/wp-json\/wp\/v2\/tags?post=74"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}