My name is Mary Susan. I am a Native Nashvillian, a wife to one rock star, and the mom to another. I am an advocate for individuals with special needs and a former middle school teacher. I have my Master's in Curriculum, Instruction, and Assessment and I’m currently working on my Doctorate in Special Education. My husband and I met our little girl Abiella in Ghana in 2011, and adopted her in 2012. Abi has cerebral palsy, microcephaly, and related diagnoses. She is a big kindergartener now and loving life. In my spare time I like to write for my blog Map Unknown: Our Journey Through the Exceptional World of Special Needs, work in my pottery studio, watch Gilmore Girls (again), and design new products for my Map Unknown Shop.
Miggy: Welcome Mary Susan! Thank you so much for participating in today's special needs spotlight and sharing your family's journey. Lets start at the beginning, your daughter Abiella, Abi for short, was adopted from Ghana and, as you told me, she has CP, microcephaly, is nonverbal, has a feeding tube and is in a wheelchair with very limited mobility. I'm assuming that you knew about all of her needs before you adopted her (if not, please correct me and I'll send a different first question!). People often say that "special kids go to special families" and I tend to bristle at that statement because a) it's not really true (unfortunately children with special needs run a much higher risk for abuse and sweeping statements like that tend to brush the realities under the rug) and b) I know that for me and many other special needs families this wasn't a choice I made and I don't feel like I was somehow more "special" or prepared than any other parent. BUT, I have often thought that statement rings true for adoptive parents who willing choose the special needs parenting route. Of course knowing what I know now I would choose it in a heartbeat, but initially I was filled with fear, as many new special needs families are. So I am curious about your conscious decision to choose something that so many people are initially fearful of, myself included--was it more about your daughter being "your daughter" regardless of any special needs, were you still afraid, did you have previous experience or a close relationship to someone with disabilities? I'm all ears! Sorry, that's a long winded question, but I think it's a really important one!
Mary Susan: Yes, we did know about Abi’s needs before meeting her, although we didn’t initially set out to adopt a child with special needs. We were only 25 years old when we decided we were ready to begin our family- and we chose to go with adoption first (something we had both always wanted to do) and perhaps have biological children later. We really wanted to provide a home for a child who may not find one, so we focused our home study on older children and/or sibling groups. Neither of us felt equipped to parent a child with disabilities. With the exception of teaching middle school and having a few students with very moderate needs in my classroom, I had practically ZERO experience in the world of special needs. However somehow in the months that followed the beginning of the adoption process, something began to shift. More and more stories of children with special needs kept falling into our laps. Before long, it was as if the subject was permanently swirling around us and it became a constant topic of conversation. And then out of nowhere, one day I was going through our adoption coordinator’s private online photo album from Ghana, and as I scrolled through 700 pictures, a photo of this little 10 month old girl popped on my screen and I heard clear as day, “That is your daughter.” I was so taken aback. A baby girl? This wasn’t at all what we had been picturing, but the energy was so strong. We knew absolutely nothing about her except she lived in a special needs wing of a large government orphanage. It would truly take a book to describe the sequence of absolutely crazy, bizarre, magical, undeniably awesome occurrences that connected that moment in time sitting on my couch staring at that picture, to us sitting in a court room in Ghana holding that same little girl in our arms.
There was a point in that whirlwind of miracles where my husband also heard the same thing (in a different way) and at that point it truly didn’t matter what special needs she had or what her future might hold- we just wanted to be her parents. The peace that came with that decision powerfully squelched most of the fear, and I’m thankful. The year that followed came with three trips to Ghana and its own set of scary challenges (trying to feed a child who needed a feeding tube in a very foreign land as a set of 20-something year old new parents wasn’t the easiest of tasks). It was so intense there just wasn’t enough room in my spirit to be scared about the present AND the future, so we just kept putting one foot in front of the other and taking one single moment at a time.
Miggy: Can you educate us a little on Abi's condition and explain how her needs affect your day-to-day life?
Mary Susan: Yes, Abi has CP, microcephaly, is nonverbal, has a feeding tube and is in a wheelchair with very limited mobility. When we met Abi we felt she might also be blind and deaf--but after becoming more nourished (she was 14 pounds at 2 years old) she has perfect hearing and is not blind. As I write this today, she has been home for four years and attends kindergarten in an inclusive environment with incredible teachers, therapists, assistants, nurses, and friends. We are so lucky to love her school system and the people in it. She receives 4 meals by tube a day, (including lunch and a snack at school given by the nurse), is on a consistent rotation of occupational therapy, physical therapy, speech, and feeding therapy (she’s learning to drink/eat by mouth), and she also rides horses once a week. I don’t think about it often, but I suppose if someone was looking in from the outside, they may say her mobility challenges and lack of speech affects our daily life the most. But to me, it’s just our world. Truthfully, I don’t feel like she’s nonverbal because we talk all day long in our own way. Whether it’s a laugh or a sigh or a cry or a glance- she’s constantly telling me what she likes or needs and answering my questions. We are also working on communicating with head switches and eye-gaze equipment and making steady gains in that area. Just this year she showed that she was mastering some of her early literacy content. She loves Elmo, her dogs, reading books, and Bruno Mars. She’s a spunky gal who finds the majority of her day to be exciting and hilarious.
Miggy: What are the biggest worries you have for Abi? On the contrary, what are your hopes and dreams for her?
Mary Susan: Wow. Good question. My biggest worry for her is life after high school. My fear is that all her friends go off to college, and the resources we have relied on for therapies, education, and even social events will be gone in a single instant. Some refer to this situation as “falling off the cliff.” Studies show that the quality in life often drops after graduation for individuals with severe disabilities, especially those who rely on assistive technology to communicate. In the early days of the adoption we spoke with families of kids with multiple disabilities to ask questions and learn from their experiences, and what I discovered was most parents said they could manage the day-to-day but the thought of the future was paralyzing- and I can see why. The sheer physical requirements of helping an adult bathe, go to the bathroom, and transfer from place to place sounds exceptionally challenging. But perhaps even more than that is the need for social engagement and advanced education or job opportunities. Prior to adopting Abi, I was a middle school teacher in the general classroom. While teaching, I got my masters in curriculum, instruction, and assessment and was working on my educational doctorate in the same area when Abi came home. At that time, I took a break from my studies. Once we were out of the woods, no longer in the hospital, and Abi had started preschool, I decided it was time to start again. At that point my passions had shifted and I switched my focus to special education. My dream is to develop a program that picks up where high school stops, allowing for further education, occupational opportunities, social events, AND (this is a big one) exceptional support for families and caregivers, including therapy, support groups, and informal places where parents can congregate--or just catch a breather- at an on-site cafe for example. I want to help families like ours approach adulthood with excitement, joy, purpose, and dignity.
My greatest hope for Abi is that she’s happy, fulfilled, and free of pain.
Mary Susan: Yes! So many. One that comes to mind is the phone call I got one day when Abi’s g-tube button (the surgically implanted device in her stomach that attaches to the feeding tube) had come out at school, leaving an exposed hole that goes straight through her abdomen and into her stomach. This is something that happens occasionally if it gets hung on a shirt or piece of equipment and thankfully my husband and I were trained on how to put a new one in without going to the doctor. That being said, the first time it happens to you can be a shock. Walking in to see all her teachers sitting around Abi with stunned looks on their faces, while Abi was laughing hysterically, was such a moment of comic relief to me. Who knew a hole in your stomach with formula coming out of it could actually not be that big of a deal?
Miggy: I know the difficulties involved in having a child with visible special needs, how can people best approach or respond to Abi? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Mary Susan: Wow. Again, another great question. Yes, I think it’s important to remember that Abi is a bright spunky almost 6 year old who has perfect hearing and understands you. I think sometimes people unconsciously correlate being non-verbal with being an infant, and then assume she has the cognitive abilities of a much younger child. This misconception can cause perfectly nice, well-meaning people to come out with extremely heavy questions right in front of her. “Will she be able to do this?” “Will she be able to do that?” “I wish I knew what she was thinking…” I don’t go up to a typically developing child and ask their parents, “Will he be able to go to college? Will he be able to live on his own?” While I understand why people have these questions, I appreciate them asking in private- and not in front of a bubbly kindergartener. The best way to approach Abi is just to talk to her like she’s any other kindergartener, and then to allow time for her to respond. It may be a smile, a laugh, a movement of the head, but she will more often than not let you know she hears you.
Miggy: If you could say something to any parents who be considering adopting a child with special needs, what would you say? Is there any advice you'd give yourself if you could go back in time?
Mary Susan: I see SO many kids with special needs who don’t have a soft place to call home. These children need families who will advocate for them and help them navigate life. If you truly want to be a parent to a child with special needs, I would say don’t let tangible worries like finances or the house layout be a deciding factor. I was barely comfortable with changing diapers when Abi came home- I had zero experience in the medical community- our home was not at all handicap accessible- and just like any other parent in a similar situation- we figured it out and kept on moving.
Also, do your BEST to find other parents in similar situations- preferably before you’re panicking and WISHING you had someone to talk to who understands. The phone calls I’ve made or the texts I’ve received from fellow special needs mamas in the heat of a crisis or the beauty of a milestone have truly made all the difference in the world.
Lastly, If I could go back and give myself advice I would say, “Your gut is right. Life isn’t going to be just good, it’s going to be magical.”
Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Abi's mom?
Mary Susan: Abi approaches each single moment with such awe. Whether it’s giggling at the sound of a honking horn or belly laughing when she leans backwards (because life with your head upside down is so-very-hilarious), Abi is teaching me that life is way more fun and exceptionally more beautiful than I could have EVER imagined.
Mary Susan, I don't even know what to say but HOLY GUACAMOLE you are a force to be reckoned with! I love everything about your story and am so grateful you listed to God or Love or the Universe or whoever, over any fears you may have had. "Life isn't going to be just good, it's going to be magical." Abi radiates joy and what a blessing for you all to have each other. I'm also so glad you talked about--and more importantly have a passion for--helping families with resources after high school. I honestly had never thought about it before, but yes, so many families depend on the help and care they get through their schools and I can only imagine how scary it can be to face a future where you're suddenly cut off from services and support. I am cheering you on all the way on this and can't wait to see the things you and your family accomplish. Thank you so much for sharing your story, your wise words and your sweet Abi with us--please give her a giant hug from me.
Amazing right? As always if you or someone you know would like to participate in the Special Needs Spotlight please email me at thislittlemiggy at gmail dot com!
Have a fantastic weekend!