I was 5 months pregnant when my 2 and a half-year-old son Liam (who had typical vision and hearing) was airlifted to a city 5 hours away. He had become severely sick from meningitis. After months away from home, due to complications from the meningitis, we brought home a child that was now deafblind. Just weeks after that I gave birth to my youngest son. I was now the mother of a deafblind 3 year old and a newborn. My life was turned upside-down. While I was thankful my son was alive and healthy now, I was overwhelmed. I could no longer do the things I used to do with him because they were not accessible. I couldn't do simple things like go to a grocery store or a friend's house. I could no longer work as a teacher full-time, as there was no child care for Liam. I needed to learn a new way to communicate with him and to find out how to make his world accessible to him again. I felt determined, yet alone.
That first year Liam's young brain was still healing from the effects of his brain swelling from the meningitis. He was trying to figure out what was going on (why he couldn't hear anyone, why he couldn't see anything, etc.). He was learning how to move about his surroundings without getting disorientated or hurt. He often got frustrated and had a very short attention span. He wasn't the easiest child to work with and when you did work with him, it took a lot of energy! He was a lot of work, which was both physically and mentally exhausting. Despite all that happened to Liam, he was still my happy boy. I was so thankful for his happy spirit.
This was not the life I planned for my son.
In the beginning, a lot of people didn't know how to interact with Liam anymore. They loved him of course, but were nervous and unsure. Or worse yet, they pitied him I didn't want that for my son. To me, this was our new normal. I didn't want to be pitied and I didn't want people to feel sorry for Liam because he didn't feel sorry for himself. People meant well and I would smile and be kind, but secretly it hurt. I wanted to move on. This wasn't the life I planned for my son, but I was determined it was still going to be good. Different, but good.
I can do this!
I first met my son's TVI (Teacher of the Visually Impaired and Orientation Mobility Specialist) when Liam was three. It was through the Birth-to-Three program through the school district. We also met his speech therapist at that time. Those were the first two people in town, outside of my family and a few close friends, who "got it". Neither one had ever worked with a child that was quite like my Liam. They came to my home to work with him. They treated my son like a three-year-old child, not an untouchable deafblind unknown. They weren't nervous (at least they didn't show it!) and they jumped right in and began playing with Liam, communicating with him and starting to form a relationship with him. This momma's heart was encouraged. During that time, those two were about the only contact I had with the outside world. It was like a heavy weight was lifted off my shoulder. I was treated like we were normal, never once pitied. I started to feel like myself again. I started to feel like "I could do this!"; Liam "could do this" and thrive.
I have found my place.
Now 5 and 1/2 years later, I have found my place. My son is happy and thriving. He is social, a braille reader, loves life and playing outside. I am confident as a parent again and can communicate beautifully with my son. I know enough braille that I can help him with his homework. I know enough about his language that I can have conversations with him about his day, what's important to him, read books with him, etc. I am currently enrolled in my second semester of graduate school working towards my masters in Special Education, with a specialization in Vision Impairments. I am an advocate for my son and this journey has led me to want to work with other children (and their families) who have vision impairments. A big part of this is because a TVI from South Dakota believed in me. A TVI from South Dakota encouraged me invested time in me.
10 things my son's TVI did (and still does) to support and empower me as the parent of a child who is blind
- He often invites me to come watch lessons at school.
- He involves me in the IEP planning process. I am treated like an equal team member on my son's team.
- He doesn't give too much new information to be learned at once.
- He meets me outside at pickup/drop off and gives me updates on progress...face-to-face time. He also emails, texts and calls with progress, as needed. Frequent communication has been key!
- He helped me create braille labels for homemade books and for my home at the beginning before I knew how to braille for myself.
- He gave me braille supplies, activities and materials to have at home to get me started.
- He offered braille classes for me and also Liam's entire team and other school staff.
- He treats my son like he is a child first.
- I receive many mini-lessons from him about whatever it is Liam is working on. These quick lessons happen at school meetings, drop-off and pick-up time from school, phone calls, etc. I feel like I have slowly become confident and knowledgeable enough to support my son at home from these lessons. He points me in the right direction when I am looking for information.
- He encourages me and believes in me.
Advice to all of the TVIs out there
If I could give advice to all of the TVIs out there, I would tell them...You matter! You make a difference. You might be the only person parents meet that make them feel understood. Be the encouragement they are waiting for. Help empower parents to become strong confident advocates for their child with vision impairments by guiding them and teaming with them. By gently teaching them and showing them that they can do it! Let them know they are not alone. Being the parent of a child who is blind can be overwhelming and unknown at first. Believe in them and let them know you believe in their child. Be understanding and get to know the families of your students...who knows, they may become your greatest ally!
Thank you for all you do!