2020: Glimpse Into the Life of a Special Needs Family by Joanna Kent

The world stood still for a moment as the freeways were silent, the skies empty of any planes, and the sidewalks were bare of any people. The uneasy calm mixed with fear in the air was a feeling I had known all too well. It was the feeling I had when we got our diagnosis. I was in a pure daze during that phone call. The world lost all sound, and it felt as if I was all alone, even as hundreds of co-workers in the building buzzed past me.

[…] humans need interaction.

Many people are now able to live in a state of slight hope. The vaccine is becoming available, and even though most realize it will take time, knowing that an end is in sight can bring hope. But in the meanwhile, what about the families that lost so much? The people who have lost their battles. The people who are still fighting theirs with the lasting effects we don’t understand? Children are waking up without parents, siblings lost, jobs and businesses gone, dreams stolen, from something that no one had any control over.

That was how it felt for me. In ways, I would justify how I brought this on myself. After all, I had the child, right? Would you blame the frontline worker who got infected? Blame them for saving lives and be exposed to something that shouldn’t have even been there to begin with. Something you can’t see. Something you can’t control. They choose to be a nurse, doctor, EMT; they didn’t choose for this.

2020 is a year of the complex reality that we took for granted that we are a social world. That humans need interaction. That we need to be able to go places, and that some people have the power to tell us we can’t. Years ago, a mother told me her child needed temporary assistance getting around school due to foot surgery. The school district informed her that her son could sit on his rear end and push with his one good foot to the second floor. They didn’t have to do anything to make the school handicap accessible since it was historical. This had me recall our trip to Boston. We couldn’t do much from having a stroller. Of course, I don’t want to ruin historic buildings, but a school is for children. I assume this means that no children who have differences in mobility to a great extent can attend that school. Heartbreaking and discouraging, I realize that by having a wheelchair, we will not have access to the whole world as our son grows.

Many special needs families already understand limitations […]

And, to make my point a little more, pay attention to how a person who needs a chair to get into a location many times has the farther way to go. The ramps are out of place, long, and if they have a caregiver, such as myself, I could have taken the four steps into the building, but chances are I am about to add a possible 50 to 100 more steps to gain access. I couldn’t imagine the strength this takes for those who do it themselves.

Governing bodies made the choice that buildings were unable to open. People forced to stay home who have never had to deal with anything like that before. Many special needs families already understand limitations, not because we are told we aren’t allowed places with words. The world gives excuses about why with locations protected by being historical, or “grandfathered in,” meaning that specific property doesn’t have to meet the current day expectations. Think tight bathrooms…

Places don’t always care to cater to those who need more because it means space. Space is money. Now, as people are to stay six feet apart, they can better understand that boundary. There is never enough space when your child needs a chair, a bag for all their things, and lacks the cognitive understanding of what personal space is, so if you are close, he might just grab for you. As my son is young and cute, people usually are kind about him sweeping his arm out, but I imagine people will not respond as kindly to a teenage boy sweeping his hand over their butt…

Schools closed. This was the hardest for so many reasons. Lack of access to proper education is something that has made many people torn. School is more than an education. It is a safe place for our children. It is a place so we can go to work, earn a living, to afford to take care of our families while knowing our children are reaching their goals and potential. Some argue that teachers as heroes and others demand teachers go back and educate our children in person – arguments I understand both sides of too well.

It took months to find a school that would accommodate and meet my son’s needs – who was only four at that time – when we relocated. People are so used to education being readily available they have no idea the struggle that so many experience for their children in finding an appropriate school. It’s assumed our children will fit, but in some cases, such as ours, the school can say your child doesn’t belong, we can’t accommodate them.

[…] for many of you, this is temporary.

Distance learning sucks. Distance therapy, don’t even get me started.

2020, has been a year of many lows, and honestly, mental health has been the most considerable struggle after COVID19. I have struggled with self-medicating via ice cream, peanut butter cups, over-exercising, overeating, not leaving my house, not eating enough, drink with dinner, obsessing over trivial things, the list goes on. And not in that order and not looking so neatly.

So, if there is one good thing to come out of 2020, it would be that I could say to someone, you know the feeling when they took (fill in the blank with all the above) away? Did they force you to keep your child home? Were you forced to quit your job? You know the feelings of all the chaos, uneasiness, and so much more? You have gotten a glimpse into what is “normal life” for many special needs families. Except for many of you, this is temporary. Your child will have resources again, and the economy will be able to bounce back. You will be able to walk around without a mask again one day. But my child will never get the genetics he is missing, and we will always live in a state of 2020.

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Joanna Kent
Joanna is mom to a "typical" 7-year-old and a special needs 4-year-old son with a rare genetic disorder. She is a full-time mom, caregiver, and content creator for OHS. She wants to share experiences hoping that others can benefit from what she has learned along the way.

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