In continuing with our celebration of Down syndrome Awareness Month this October, today’s blog post is all about growing up with a sibling with a disability. I spoke with Lindsay Shabet, the older sister of Jake, who was born with Down syndrome. Keep reading to see her wisdom, insight, and passion for differences.

Tell me about your family:

I grew up living in different suburbs of Houston,  but spent most time in Katy, TX. My dad, Alex, works as a Human Resources Executive for Phillips 66. My mom, Christina, is a lifestyle coach for an online health and wellness program. I, Lindsay, (23) am currently a second (and final!) year speech-language pathology graduate student at The University of Oklahoma Health Sciences Center in Oklahoma City, OK. My brother, Jake (22), recently aged out of the public schools and is working with my parents on a job hunt! My mom, dad and brother all currently reside in Fulshear, TX. 

What was it like growing up with Jake? 

I honestly felt like we were just like any other set of siblings. From growing up with Jake, I believe I matured faster than my peers. I had to understand the value of sacrifices and patience and not only the impact of Jake on my life at the time, but the impact Jake would have on the rest of my life. There were certain things that my family or I did not participate in because Jake couldn’t do it or possibly couldn’t tolerate it with some of his sensory sensitivities. As my parents get older, we have had discussions of what I would want for Jake after they are gone. My parents have never expected me to take on anything that I did not want to or did not feel like I could handle and I will always appreciate them for that! 

How did your parents explain/talk about Jake’s disability with you?

I don’t remember having any kind of “talk” with my parents about Jake’s disability. However, my parents told me about the time they decided to discuss Jake’s disability with me. When I was about 4 or 5, my parents told me how Jake was a little different from them, myself and other children. They told me he would need more time and more assistance to get everyday things accomplished and that it might require a little extra patience. My parents emphasized that even though they may need to provide some extra attention to him, they still love me and care about me equally and will always be there for me. After the discussion, my dad told me the first thing I responded with was, “How can I help?”. From that moment, they knew that I would someday find myself in a helping profession (and here I am!).  Before having the conversation, I don’t remember ever thinking anything different of Jake. I remember the doctor’s appointments and the g-tube and the walker. But, I also remember running around like any other set of siblings - playing all kinds of imaginary games and just always having the best time! 

As a young kid, I do remember that I didn't quite understand the reasoning behind why Jake could not talk and communicate like I could. I remember one year in elementary school we were assigned the task of writing a letter to Santa and that a few would be selected to be published in our neighborhood newspaper. I wrote a letter to Santa asking to give my brother the ability to speak, even just for one day. My letter was chosen to be published and I remember it broke my parent’s hearts. It’s kind of a blur since it was so long ago, but I believe they sat me down and provided a reason as to why Santa would not be able to provide that. This was when they went into more detail about Jake’s communication difficulty and how it would more than likely always be a weakness for him.

How did your family respond to people asking questions or making comments about Jake?

There are very few instances where I remember someone intentionally acting negatively towards Jake. I would say it has been at least 10 years or so. The instances I remember, Jake was not aware that he was the victim in the situation. He loves to laugh and have a good time so he thought people were laughing with him and not at him and that they were all taking part in some “game.” Thankfully, I have been around in some situations and have been able to end it and address the situation. However, I do worry about the times that myself or someone else who can stick up for him are not around and the negative impact it can have on him and others. 

In general, one of the things that irks me the most is people’s use of the word retard/retarded. Although when I hear it, 99% of the time they are not referring to my brother specifically, it still hurts me and I think about the impact it has on people’s image of him and individual’s similar to him. Whenever I hear someone use those words, I try to take a second and turn it into a teaching moment and hope that maybe I’ve ignited a change in them to eliminate that word from their vocabulary. It astounds me the amount of people that I hear use it as a slang term within the therapy and healthcare profession. People in this field work with individuals with intellectual and developmental disabilities on a regular basis. I do not think I will ever understand how they can so casually throw around such a hurtful word.

Most of the time, those that make comments/stare are the little, curious kids. There are many kids that have never been around an individual like Jake, so again, I take it as a teaching moment! Jake is very friendly and loves kids. He typically gives the first wave. Many times, parents of the other children are open to using the interaction as a teaching moment as well.

Occasionally, others are more adventurous and reach out to Jake first. From my experience, what I witness that takes most people by surprise is when they ask what his name is and they are answered with a strange syllabic grunting with some recognizable sounds as an attempt to say “Jake Shabet”. Jake has severe apraxia of speech making him minimally verbal and causing him to have highly unintelligible speech. Many times, people freeze and are unsure how to react or respond when this happens. Typically, someone from my family is close by and acts as an interpreter to help carry on the conversation. We help to guide the conversation by providing yes/no questions because he does well answering those clearly and independently. 

What do you wish people knew about Jake?

Jake has the sweetest, kindest and most pure soul. The love he shows for everyone and everything he comes across is indescribable. He is also one of the strongest people I know. I feel he brings a light to everyone he comes across without even realizing it - he’s just being himself!

Some of his notable accomplishments that stand out to me and I believe define who he is as an individual: 

• This boy can DANCE. He is always up for a party or a good time. Nothing slows him down. He had scoliosis reconstruction surgery in December of 2018 (which he took like a CHAMP) and then was the first one up and rocking the dance floor at a wedding in February 2019. By the looks of his moves, no one would have guessed that he had had a life altering surgery 2 months prior.

• He is so smart and remembers EVERYTHING. He knows everything related to Disney like the back of his hand (movies, music, the parks, characters, etc.) He can even do impressions of some of the characters which is always entertaining. 

• He’s also a little sneak and kind of sly. We have to change the parental code on the TV because he will go and purchase items. He is also guilty of figuring out a movie theatre app and buying the whole family movie tickets. 

• Being nonverbal, Jake knows hundreds of signs that he uses on a regular to basis to communicate his wants and needs. I was fortunate enough to also start learning this beautiful language when I was 10 years old. I studied it in high school and undergrad and love that I am able to incorporate it into my future career. What Jake lacks in verbal communication, he makes up for in his warm and welcoming gestures and smiles. 

• He has competed in many Special Olympics sports such as swimming (taking after his sister)  and gymnastics. When he was in high school, he was a member of the JV Bowling team and participated in their weekly practices and competitions. Additionally, he attends surf camp every year and had the opportunity to surf with a world champion surfer in Waikiki Beach this past May! A couple summers ago, he also learned to ride a two wheel bike which is a simple task to most individuals that they often take for granted, but allows a sense of independence to individuals like Jake.  

• He is an absolute social butterfly. Jake has never come across someone who he didn’t get along with. I’ve never seen him unable to put a smile on someone’s face, including mine. Whenever I need a pick me up, I just FaceTime him and within minutes we are making each other laugh just by making faces at each other. 

  He is an absolute gentleman and hopeless romantic (probably all Disney those movies). Like I said, this boy loves HARD. He has had a girlfriend for about 3 years and he treats her like a kind gentleman. He wants to get her flowers at the store and sends her cards. He even spoiled her on Valentine’s Day!

• Although it may take a little longer, or maybe an unconventional way to accomplish something that typical individual’s easily do, Jake CAN do it. It just might require a little bit of patience, some support, and a dash of encouragement. In 22 years, we have not come across a single thing that Jake cannot do. 

What do you wish you could tell other families who just welcomed home a child with disabilities?

Being in the field of speech-language pathology, I have had the opportunity to meet multiple families with a child with disabilities. I have been able to talk to siblings and parents. I always tell them that it has been the absolute best experience of my life. Jake has taught me how to have empathy, patience and a caring heart. He has showed me how to find joy in everyday life and to take pride in the small accomplishments. I have come to respect the difficult journey that some might take to reach their goals. I have grown to root for the underdog and to search for the best in others. Jake is the whole reason I am the person I am today and I will forever be thankful for that!