A special-needs mother’s hope for inclusion this holiday
Written By Jameka Johnson
I’m married to the love of my life; he is where I find peace. I’m a mother of twins (boy and girl) who are my Ying and Yang, moon and sun. Then, there’s my oldest son (age 11), who made me a first-time mom and helped me embark on this journey that we are traveling hand-in-hand.
With the holidays coming up, many people are putting up decorations, planning meals or even trips. What’s on your menu? Have you been invited to any holiday gatherings? If the answer is no, well, you aren’t alone as the holidays are a challenging time for us special needs families. The new change to routines, the unfamiliar foods, unknown faces, traveling, and different sleeping arrangements make the holidays chaotic. In our home, we can’t think of a time when a meal wasn’t uneventful, never mind a special holiday meal, but we made it work. Throughout our journey, we have changed for the better. There are some family members who try to understand our son’s disabilities and others who couldn’t care less.
While I was still learning how to manage my son’s challenging behaviors, what I needed most was support from my extended family. Being the primary caregiver to a child with an intellectual and mental disability has a huge impact on both the child and on the caregiver. Receiving a Disruptive Mood Dysregulation Disorder (DMDD) diagnosis, that is neurological, for my son, combined with his other disorders was a somber moment. It makes you examine all the aspects of life and question how will your view of the world change? You think of the social aspects, both yours and your child’s, from now until your child grows into adulthood. The emotional roller coaster has me asking frequently, am I okay? Will we all be okay? Trying to navigate through a child’s disability is difficult. Once you realize no one will fully understand or take the time to understand your situation during the difficult times is another gut-wrenching moment.
Many people don’t take the time to get to know our family or ask the possible whys behind some of the emotionally driven meltdowns. At this point, so many are following the stereotypical behaviors they hear that are associated with disabilities. Did people forget that not everyone is the same? When one chooses not to gather enough information, and assumptions are made, negative feelings can easily emerge. The one family member that checked in or cared to know the whys gave me some hope. My family does look different than most families, and what works in our house isn’t going to necessarily work in your house. The fear of my son’s disability shouldn’t limit other family members from interacting with him or with us. Giving him a chance by having an intelligent conversation with him will do those who shun him some good. He is a pleasant gentleman once you get past the behaviors, which by the way, are out of his control. He experiences the fight and flight due to an overactive amygdala in the brain. It’s not bad behavior, it’s neurological, that is thankfully under control now with the brain- based treatment that targets the root cause in the brain. Even though he’s doing great now, once a family member’s mind is set, it’s hard to change their thinking unless they experience for themselves the turnaround with our son.
Are you the black sheep of the family, or do you know who they are? Well, my family is the flock. The question of what time is dinner was asked on numerous occasions and sadly left unanswered. Are we suppose to be okay with that outcome? Our family was more likely to be discriminated against due to having a child with a disability compared to a family member with no disabled children. Why? They have already made up their mind as to what his disability is and how to approach it. Our family was automatically stigmatized, which affected our lives and made us vulnerable to comments, victimization, and bullying. It’s not fun when you and your family become the butt of all the jokes and accomplishments go unnoticed. The avoidance of my family became prominent.
Once my son lets you into his world, you will have a friend for life! My son’s battle became my battle. I am a mother trying to navigate our life on this new path that isn’t clear. It’s painful when you stand in the middle of your village, and all your people have gone into hiding. I keep trying to reach out to family members because my son deserves to experience the same level of love and acceptance as the rest of the family. When others approach us in public, they expect that my son will acknowledge them. Of course, that is the social norm, and that is what I would want my son to do as well. However, when my mentally challenged son ignores others, he’s not doing it to be rude. If we could have shared bread together, it would have given me the opportunity to explain that not making eye contact or ignoring others is part of who he is.
I once again say, “Let me explain to you over dinner what’s going on with my little guy and how he’s doing so well now!” Again, “What time is dinner?” The answers I typically receive are: “Oh, I’m not cooking.” “I was invited to dinner with another family member.” “I’m not cooking food your kids eat.” We offer to bring dishes, desserts, drinks, or anything that would make it easier. Having a child with special needs requires making decisions that will make life better for him. We don’t ask others to change their lives for us or change their menus. Being a special needs parent is hard enough while fighting the school system for your child’s inclusion. So, can you imagine begging for acceptance within your own family? I’m sure other special needs families do understand. I offer to bring my son’s dinosaur nuggets, goldfish, and juice and explain we will be fine. I was told time after time I need to change what he eats and “make” him eat what I cook and stop the separate meals. A hungry scare tactic doesn’t work for a child who takes every word literally. How do you “scare” a child into eating? If what he eats wasn’t prepared, he would starve because he simply isn’t going to eat what’s presented.
“Oh, it will be too loud at my house,” one relative said. I explain he always has my cell phone when we are in public and he will be just fine. When my son had a meltdown, the whispers began. My son’s behavior was clearly a product of my parenting is what others thought. The harsh and judgmental comments are all too familiar to me. “She can’t control that boy!” or “If he spent the day with me, he wouldn’t act like that!” What I want to explain is nowhere have I read or yet experienced that a particular parenting style would just “fix” my son. Maybe the invites didn’t exist because my child didn’t behave according to what the family said or didn’t say. What happens when we love our neighbors but turn a cheek to family? What time is dinner became my attempt for inclusion that never occurred.
Can you imagine the hurt of seeing pictures of your extended family on social media and not one including your family? The “I’m not cooking” shows just the opposite on social media. All the love squeezed in the post, plus the off-guard pictures of individuals laughing makes me feel alone. What if I said I saw their pictures on social media and I saw that they did indeed cook a holiday meal? What if I told them how hurt I felt? Would they react by inviting us over the following day after everything had been cold and picked over? I wasn’t aware we weren’t worthy of a holiday dinner. Having others assume your family wouldn’t enjoy an event, or a dinner is an assumption and not the truth.
I received a call the other day from my grandmother who said, “He can have his nuggets while we enjoy dinner. Oh, and Thanksgiving dinner will be at 2 p.m.” I hung up the phone with a grateful heart and repeated out loud, “Dinner will be at 2 p.m.” My son is included! We are included! That’s all we ever wanted — to share a meal — and now we will get that chance, just like the rest of the family.