Focus on Advocacy
Much to our surprise, we were having triplets. How on earth were we going to raise triplets? We were already blessed with a 2-year-old son. We knew the risk we faced having multiples. After letting this news absorb for a bit, we got used to the idea of this being fun…. challenging, but fun! The next six months were very risky. I was able to carry them to 26 weeks gestation. Due to complications with our baby boy, we had no other decision but to deliver all three so extremely early. We had no idea the roller coaster we were about to ride! They were born at 26 weeks gestation - one boy, two girls. Our little boy passed away at one month due to complications from prematurity. Our two girls survived.
Now we had to figure out how to “do life” with our triplet survivor daughters ... one sighted, one blind. Juliana had many surgeries as an infant into her toddler years to keep the retinas attached. Retinopathy of Prematurity is her eye condition (ROP). The surgeries were always a success, but the healing process was not.
As soon as we faced the realization that she would live a life of complete darkness, our first worry was how she would be able to go to school. I’ll never forget the sweet kisses and cuddles I gave her, rocking her while whispering in her ear, “I will never let you down!” I was determined to never break that promise to her because I knew that as her mom, I would be her biggest cheerleader and advocate!
Juliana’s Special Ed Team
Her services began with Early On coming to the home when Juliana was an infant. I believe the social worker from the hospital got these services rolling. From Early On’s observations, they assigned her to a Teacher Consultant for the Visually Impaired (TCVI), Physical Therapist, and Occupational Therapist. She got these services at home until she was 18 months old. I then had to take her to a class to continue to receive these services 3 times a week. At age three … here we go … she started riding the special ed bus to the Early Childhood Center to start attending Early Childhood Special Education (ECSE). Buckling her in the bus seat for the very first time and watching that bus roll out of our driveway carrying my blind child was excruciating to my mom’s heart. It was terrifying learning that my daughter would be the first blind student to attend our school district. It was so hard to put my trust in the school system when it was an “unvisited avenue” for them. It took everything I had to not jump in my car and follow that bus to her new school! I had many sleepless nights leading up to her first bus ride to school. I often thought to myself, “How is this going to work? And how will they know what to do?” As her mom, even I was still figuring out what to do!
Being the nervous and anxiety driven person that I am, I decided that I wanted to learn Braille. I knew this would be her only form of literacy. I took a 16 week course through Michigan Department of Education Low Incidence Outreach (MDE-LIO). This was the best decision ever! I started introducing Juliana to it. I made it fun. I ordered the cute Braille board books from www.seedlings.org that had the print and pictures. I was diligently reading to her while running her finger over the bumps. I knew that if my other children enjoyed books by looking at the pictures and associating the words to each page, Juliana needed to be introduced to books in her form of literacy.
As time went on with her in the ECSE program, I started to trust a little more. She had an amazing teacher who was very compassionate about her job, new at teaching a blind child, and absolutely grew to love my daughter. She and I had many conversations about what would work best for her learning environment. Juliana hated having sticky hands. I told her teacher to make sure she does the most sticky crafts possible to get her little “tactile feelers” acclimated. I remember having a conversation about fruit. Her teacher was discussing different kinds of fruit to the class. I mentioned to her that she should have some tactile play fruit or real fruit that Juliana could feel because she could not see the pictures. The fact that her teacher valued my insight, strategies, and suggestions gave me so much hope for Juliana’s future in school.
At this point, I decided that I needed to really get to know her Special Ed Team. This consisted of the Special Ed Director, Principal, Teacher, Occupational Therapist, Physical Therapist, Speech Therapist, Teacher Consultant for the Visually Impaired, and O&M Specialist. I wanted to know everybody, communicate regularly, compliment them on my daughter’s successes and have a great relationship with them all. I knew that we would be working with these professionals all throughout her schooling. I kept reminding myself, at times of anger and frustration, to do some deep breathing and to think before I spoke. As the saying goes, I did not want to “bite the hand that fed us” and be “that” mom that always jumped across the table at the IEP meeting in a fit of rage. I knew that I had to keep my composure, be mature, and be my daughters best advocate!
~ Karen Hoogland