I still remember the older gentlemans face as he helped us choose a new dryer. We had my daughter Tiana Hope with us and she was about 6 at the time. I was distracted, as going to the store with a special needs child is never an easy task. I explained a bit about her and he proceeded to tell me that he understood. He too had a daughter born with special needs, with more physical challenges and that now she lives miles away in a group home. He explained that it was the closest available for her needs. I felt bad, even though I was at a different point of our caregiving journey, but I told him how sorry I was. Continuing on I showed empathy saying how hard that must be; then I blurted out how I would never place my daughter in a home, how she'll live with me always. He replied how difficult it had become for he 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, apologize. My intent was not 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 am where he stood. There's so much stigma out there about placement. Too much actually. So much that it took me over a year to talk about my daughters move into a group home at age 18- now almost 2 years later. Until you get there you really and truly do not know. We've had our ups and downs, just as every other SN 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 I've got the 'scars' to prove it. That fight will continue on for as long as she needs me. I will always be her advocate, teacher, nurse, lawyer, etc 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 an option. T is happy, smart, giggles and love. Unfortunately, there's behavior issues along with her diagnosis of Pachygyria, which we did not get initially, only told brain disorder, macrocephaly and seizures. We later learned she had developmental delays, speech delay, autism, pdd,& sensory issues. Back then I didn't have the type of internet and groups available today. I made sure she had what the drs advised including medications, therapies, a special school,& additional care. I made her her very own 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. Locking myself in the bathroom literally happened at times 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 as T is usually so sweet. The day her psych dr had her baker acted after an outburst in his office just about pushed me over the edge. My heart was broken into a million tiny pieces. I have not even touched the surface of what we've been through. People have said all kids at 18 are leaving home, and I understand that, I appreciate that, however when your child will mentally be a child forever and their milestones are totally different that's what's gut wrenching. Letting go is not taken lightly and it is 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. No, it's not an institution. T lives in a regular house with 5 other girls her age, shares a room, goes on outings, even has a pool and she's much more independent. We are 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. With tears of both sadness and joy in my eyes I will never ever totally let go. Now I stand where he stood. Now I understand. I hope you will too. *photo of Tiana Hope taken by April K Corbett. *this post was featured on The Mighty FB&website July 2015
