I Made the Choice I Never Thought I Would for My Daughter With Special Needs

I still remember the older gentleman’s face as he helped us choose a new dryer. We had my daughter, Tiana Hope (T), with us; she was about 6 at the time. I was distracted.

I explained a bit about her, and he proceeded to tell me he understood. He, too, had a daughter born with special needs with more physical challenges. He said she lived miles away in a group home. He explained it was the closest available for her needs. I was at a different point of our caregiving journey, but I felt bad and told him how sorry I was. Continuing on, I said how hard it must be; then I blurted out how I’d never place my daughter in a home, how she’ll live with me always.

He replied how difficult it had become for him and his wife, especially his wife, due to the care she required. I saw tears well up in his eyes and he quickly left. Before long, another salesperson came over. 

A feeling of dread washed over me and I wanted to find him and apologize. My intent wasn’t to be cruel, and I’m sure his heart was heavy. At that time, I was just at a different place on our special needs journey. Now I stand where he stood.

There’s so much stigma out there about placement. So much that it took me over a year to talk about my daughter’s move into a group home at age 18 — now it’s almost two years later. Until you get there, you really and truly don’t know. We’ve had our ups and downs, just as every other special needs family has, but the most important thing to acknowledge is that each one of our journeys are different. Relatable, but different.

My daughter is my only child, my life, my heart, my sunshine, my angel in disguise. I have fought for her since day one, and that fight will continue on for as long as she needs me. I will always be her advocate, teacher, nurse, lawyer and of course, her mom. Placement does not mean I love her any less. We don’t always like choices, and sometimes there really isn’t another option. T is happy, smart and full of giggles and love. Unfortunately, there are behavior issues along with her diagnosis of pachygyria, which we did not get initially; we were only told she has a brain disorder, macrocephaly and seizures. We later learned she had developmental delays, speech delay, autism, pervasive developmental disorder (PDD) and sensory issues.

Back then I didn’t have the internet and resource groups available today, I made sure she had what the doctors advised, including medications, therapies, a special school and additional care. I made her magnetic picture cards for the refrigerator, picture books, held my own therapy sessions and prayed like I’ve never prayed before.

As hormones changed, so did her moods, which turned to aggression. The outbursts were intimidating as her strength seemed to double, and I was the target. At times, I had to lock myself in the bathroom until she calmed down, not to mention attacks while driving. Meds have helped, and T recognizes her behavior, but only after the fact. Sorrys and kisses abound; T is usually so sweet. I haven’t even touched the surface of what we’ve been through.

People have said all kids at 18 are leaving home, and I understand and appreciate that. However, when your child is cognitively disabled and milestones are totally different, that’s what’s harder for me. Letting go is not taken lightly, and it’s still hard to accept. I am very involved, and she comes home often. A multitude of research with a team of specialists helping me along made it possible.

T’s group home isn’t an “institution.” T lives in a regular house with five other girls her age, shares a room, goes on outings and even has a pool; she’s much more independent. We’re both trying to embrace our independence. She’s growing up, she’s happy and she’s going to be just fine. I suppose I will be eventually. Day by day, I learn to let go a tiny bit more. But with tears of both sadness and joy in my eyes, I’ll never totally let go. 

Now I stand where that man who showed us the dryer stood. Now I understand. I hope you will, too.

Follow this journey on April Kinney Corbett’s blog.