Special Needs Spotlight || Siah

Hi! My name is Sarah, I am married to Eric, and we have three sons that are 2, 5, and 6 years old. We love being at the lakes around us and playing with our dog, Penny. I stay at home with my kids and run a shop called Wolfe Brothers Co (www.wolfebrothers.co). We live near Ann Arbor, Michigan but this summer we are moving to Nashville to allow our youngest son Josiah “Siah” to attend an amazing school for the blind. Siah, was born with a condition called OAVS (Oculo-Auriculo-Vertebral Spectrum). This condition can affect your eyes, ears, and spine, but it looks different for every person and usually only affects one side of the body. It’s caused by one blood vessel forming too small in the first weeks of pregnancy, not allowing adequate blood flow to that side of the body. For Siah, it caused microphthalmia that lead to blindness and sporadic asymmetry on one side of his body. One of the first things people notice about Siah right now is the small tube in his nose held in place by some special tape. That’s because the asymmetry in his facial structure makes it hard to breathe through his nose, so it’s just a soft tube cut to the length of his actual nostril to keep it open so he can breathe through is nose. It’s slowly self-correcting as he grows, so we are hopeful that in a year or so it will be gone! Siah is delayed, which is typical for visually impaired kids, and eighteen months in and out of the hospital after he was born really added to his setbacks. Since he’s past all his surgeries and feeling great we’ve been so happy with the progress he’s making.

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Miggy: Hi Sarah and welcome! I’m so excited to have you here today sharing about your family, and especially your youngest who was born blind. Can you take me back to the day you found out your son was blind? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Sarah: There really wasn’t one day that confirmed blindness, but we knew it was a possibility a couple days after he was born. After several eye surgeries and tests, doctors told us they felt based on what they saw that he would probably be totally blind. There was definitely a lot of worry in those first weeks trying to imagine life without sight and things I thought he wouldn’t get to participate in or enjoy. But we had an incredible occupational therapist with a lot of experience with visually impaired kids who told me, “The good news is that Siah won’t miss his sight because he never had it. And I understand why you’re sad he might not enjoy things like going to a Michigan game with his dad and brothers…. but the truth is, you have no idea if any of your boys will like football.” I was stunned in the best way, it was a great lightbulb moment for me. I was never sad my other kids might not enjoy a football game because I could easily imagine way’s they’d enjoy it. But all my kids will decide for themselves what they like and Siah will be able to enjoy a lot of things in ways I couldn’t have imagined before. So, once I shifted my perspective all those worries went away, he is such a cool kid and so much fun to watch discover the world.

Miggy: There are many disabilities that exist on a spectrum, is this the case for blindness? If so, could you educate us about that and explain how your family and your son’s day-to-day is affected?

Sarah: Blindness is a large spectrum. Only 10% of people who are blind see nothing at all and the majority of visually impaired people are over the age of 50, so being born completely blind is very rare. The first 18 months after Siah was born was full of appointments, surgeries, and many months in and out of the hospital, so our life was upside down. Now that we’re out of that medical phase our family’s daily life is not very different from before. We try to treat Siah like we did our other boys, but it requires a lot more intentionality. Like the toys and activities we choose for our kids have moved from a visual focus to a tactile motivation. My older boys know their brother sees with his hands, so they like to show him their art projects, toys, or games by allowing him to feel it with his hands and map the objects and environments.
On a more practical level, I manage the tube in his nose as well as his prosthetic eyes. Because Siah’s was born with microphthalmia, his right eye being smaller than the left, he was fitted with prosthetic eye shells. They fit over his own eyes comfortably and help grow the bone around the eye on the smaller side to be more symmetrical. They look like very thick contact lenses and stay in unless they need to be cleaned or switched out for larger ones as he grows.

Miggy: What are the biggest worries you face for your child? On the flip side, what are your hopes and dreams for him?  

Sarah: Now that we’ve found a great school for him, my worries are mostly around watching him navigate the way people might treat him or speak to him when he’s older. When I was pregnant a lot of doctors suggested I terminate my pregnancy the first day they thought something was different. And actually, none of the things they suspected actually ended up happening, but seeing how quickly people can dismiss differences as less than or unworthy is a pain I haven’t yet moved through completely. That’s part of the reason I am thrilled to participate in your special needs spotlight, I don’t want my boys to feel limited by what people think or say so I have to model that for them. My dreams for him are that he accomplishes whatever it is he wants to achieve, and that’s totally up to him.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations? (This question came about because I never envisioned saying things like, “Where’s the baby’s arm? Did we bring her arm?” In reference to my daughter’s prosthetic arm, while strangers looked on like we were crazy people.)

Sarah: Yes! When Siah was being fitted for his prosthetic eyes it took several tries to get the right size and fit. I was so excited to finally see him with them in for the first time that we went to get them right before we left for vacation. The next day we’re 2 hours into our drive and my 4-year-old calmly announces, “Mom… Siah’s eye fell out…” Very matter of fact like it was the most normal thing to say. The entire vacation was spent trying to have fun at the lake while yelling over to my husband, “Don’t let him rub his eyes! They’ll fall out!” It’s so weird and hilarious, I’m sure people that heard us were very confused. Thank God they fit great now but we still have the occasional rouge eye if he really rubs them. My husband has such a great sense of humor, he keeps me from getting stuck in the hard part of things we’ve been through. I think being able to find the humor in things is just a universal parenting skill that’s great to have because you don’t have to have a child with differences to find you have tears rolling down your face from laughing or crying just about every day.

Miggy: How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  Are there any stereotypes about being blind that you would like to correct?

Sarah: One awkward thing I’ve noticed happens a lot is how many people tell me about a blind animal they’ve seen or heard about. I actually appreciate the effort, but I also really want to say, “An animal, huh? Please tell me more about your neighbors’ blind goat, I can totally relate…”  I think a good best practice is to ask yourself if you’d say the same thing if you were talking to the parent of a child who didn’t have differences. Try approaching a mom with a new baby, and announcing, “Oh my gosh! Is that a boy?! I just saw a lady walking her dog and it was a boy!” I doubt she’d be impressed with the association. I wish people would realize there are a million things that we all have in common to talk about, and it feels good to be known for likenesses sometimes when so much of your world revolves around having to explain your differences.

The best way to approach and respond to Siah is to treat him exactly how you’d treat any other kid his age, just say hi and smile! Hey, they can even tell me about their neighbor’s blind goat if it’ll mean they don’t stand 5 feet away staring and whispering to their friend! I’m probably not well educated yet in common stereotypes of blindness yet, but I’ve noticed a lot of people immediately respond with, “oh my gosh, that is so sad!” when we tell them Siah is blind. It’s just different, and different does not equate to sad! The feeling that people pity us or him is by far the worst feeling, and it is usually disguised as kindness. Few people will say they feel sorry for you right to your face, but a lot of people will say things like, “I feel so bad. I just really admire what you guys are doing.” Like raising our kids?…Going to the grocery store? Haha I think it’s another example of something you wouldn’t normally say to a parent who has typical kids and it highlights that you feel sorry for us. I think your blog post on pity was spot on, I wish everyone would read it! If someone thinks they’ve dodged a parenting bullet and their kids are totally normal, whatever that means, maybe their day is coming! All parents have mountains to climb raising kids. And it’ll be soul-explodingly good if people stop thinking that sameness is the only victory. Siah is the greatest thing to ever happen to our family. If someone can’t see that, it’s probably because they lack vision! now that is sad.   Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your son?

Sarah: Siah is lucky to have brothers that embrace his differences and don’t really think twice about it anymore. They were only 3 and 4 when he was born and we talked about his differences first thing, but it wasn’t all rainbows at first! They’re normal kids and they had questions and concerns, and still do from time to time. I do to! But it’s made conversations about all kinds of other people an easy discussion to transition into. My 6-year-old is the articulate educator, and he will make every trip to target weird by announcing Siah’s blindness to strangers and correcting the way people “show” him things if they don’t realize he’s blind. My 5-year-old is more sensitive and quiet but is a fierce defender. When we’re watching a movie and a character that’s intended to be outrageous or exaggerated comes on and someone else makes fun of it, he will whip his head around and say, “They have differences! That’s COOL!” Exposing your kids to people who are different than them at an early age and sharing the importance of not only acceptance, but inclusion, is so important.

All my boys are very lucky to have each other.

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Sarah: I think that one of the biggest things I’ve learned from being Siah’s mom is that the hardest things, that you thought you couldn’t do, end up exposing the strength and capabilities you didn’t even know you had. Not everyone gets to experience the overwhelming goodness of having a child like Siah, so I feel very lucky!

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Sarah thank you so much, this was informative and you articulated so many feelings I’ve experienced so well. First I loved the wonderful doctor who helped to change your perspective about Siah being blind and enjoying football games–it’s so true! We can’t control any of our children’s likes or dislikes and we don’t tend to focus all our energy on those things–disability can be a great shifter of perspective in this way. And it hurts my heart to hear that several doctors suggested termination on the day you found out about his differences. Whether you’re pro-choice or not, it is absolutely problematic to have a world that immediately wants to terminate a child based on nothing more than a potential disability. If you’re still unconvinced think about this, what if we had the ability to tell which fetus’ would turn out to be gay and doctors regularly suggested aborting those babies because “they’d have such a hard life.” It’s not OK and it makes me stick to my stomach to think there are people out there who would believe my daughter’s life is worth less than someone else. And lastly, yes to the pity problem. “It will be soul-explodingly good if people that that sameness was the only victory.” Amen. Thank you so much Sarah and give your beautiful boys hugs from me.

As always if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!
XO,
Miggy