Four weeks from today Rachel’s college classes as part of the Missouri State University Bear POWER Program begin. Excitement and lists are plentiful around our house! While the key question for a very long time may have been “What will Rachel do next,” the new question is “How Are You doing Mom and/or dad?” It is most often directed at mom.
May seem like a simple question, but it isn’t. I’ve heard questions like “How on earth are you going to leave her?” “Are you moving to Springfield with her?” I have never moved a child to college. I myself remember how hard it was when I left home and how I wanted to go home. Friends and acquaintances have painted a clear picture of the arrow to their own hearts as they left children at college. I am smart enough to listen and know that I can’t fathom exactly what it will be like to leave her in really cool suite in a dorm room several hours from our home. So for the purposes of today, I will answer the question of how I am doing to the best of my inexperienced ability.
I want to close with something positive so I’m going to start with the scary part of the answer. Vulnerability. By nature of having an intellectual disability, Rachel is more vulnerable than many others going off to college. Depending on what you read, it is predicted that upwards of 70% of females with intellectual disabilities are sexually assaulted. That lingers in the back of my mind but that’s not a new thing. From time to time, I will see something like a “Law & Order” (I’m a junkie) episode where a person with Down syndrome is raped, and I go off on a mission to interrogate Rachel about what she would do in different situations. Rachel was in the same sexuality education lectures as her friends. We have always talked very directly about these topics. Rachel may have the moral compass of Jesus, but let’s face it, at heart she is a party girl who has never seen a dance floor she didn’t love.
We have always trusted God to put a hedge of protection around Rachel. In other words, we have done what we can do. I suppose I could keep her at home or keep her within my eyesight every minute, but we have never lived like that. From the time Rachel was small, we have said we will not let our own fear* stop Rachel being who she wants to be and who God intends her to be. Rachel’s favorite Bible verse is Joshua 1:9 “Have I not commanded you be strong and courageous for the Lord Your God is with you wherever you do.” I’m counting on it.
The second part of the answer to how are we doing is my brain is a bit crowded. In Rachel speak, my brain is full. Crowded thinking about the modifications and accommodations that she will need for her classes and who will make sure that is done. I mean, who will make all those flash cards? By nature I’m an organized person and my brain continues to make mental lists of all that needs to be done and all that needs to be remembered. Things we’ve been doing to support her for almost 19 years. Things we have been working to help her do herself. Things that her full brain struggles with and things that are difficult for her to do without help.
We believe that the Bear POWER program is implementing an excellent model. Rachel will have a circle of support of four peer mentors including one who is the lead coordinator. Each has a specific area to provide support – academic, social, and health/wellness. They have been working with professors so they will be ready for these students. I believe they are doing all they can do in the way of preparation. I also know there will be unforeseen bumps. Jawanda Mom has spent 16 years navigating education systems that’s default setting is “do not presume competence.” Yes, we had many capable people and Rachel cheerleaders, but they would tell you that I had to stay on top of everything or Rachel would have fallen through the cracks. I promise you this, if not for us advocating and knowing our rights, the law,best practices, and most importantly our daughter, Rachel would be headed to some adult babysitting routine and not a college program. From the kindergarten IEP meeting where the “expert educators” recommended a segregated setting for a precious, capable six-year-old and we said, “No, thank you. Rachel will be in the general education classroom” until the day she graduated and received her diploma, we were making sure everything was done and her IEP followed. It was exhausting. It was worth it, but you don’t spend 16 years like that and suddenly have complete faith that the next system will take care of everything . For Rachel’s sake and that of the program director, I am trying really hard though!
My standard and most appropriate answer to the question “How are we doing?” is to say we are excited. Amidst all the mental lists, safety concerns, and trust issues, excited is the word that best describes all of our feelings. Nineteen years ago no one was talking about college for students with Down syndrome. That came much later. Since she was a little girl, Rachel has talked about going to college. The exact college may have changed, but she has always been firm in her resolves that she just wants to have the same opportunities as her friends. We, her parents, want to do everything we can to give her the best possible path to living her dreams and this seems to be that path. Maybe parents of typical students can say to me that I cannot fathom how hard it will be to leave her (I believe them), but I wonder if they can fathom the joy that leaps in my soul to know that Rachel Nicole Mast is going to college? Dreams that we thought would never come true are coming true.
On that February day almost 20 years ago when my doctor told us our unborn daughter had Down syndrome, and I felt like my world had collapsed and so many dreams had died. God has shown me through the person of Rachel that joy truly does come in the morning and that He truly has the best plans even when I can’t see that. My life verse has long been Jeremiah 29:11 which says “For I know the plans I have for you,” declares the Lord. They are plans to prosper you and not to harm you, to give you a hope and a future.” How can we not smile with great joy and excitement when you think of it like that? How can you not look forward with excitement to the next chapter – #BabyRachelGoestoCollege
*See my earlier blog “Auditions: Paralyzed by Fear”
