Cynthia L. Eppley, MA
Special Needs and COVID
The Pandemic of the past 3 months have been challenging for all of us. Restlessness, boredom, fear and anxiety abound. Haircuts and coloring are needed by many. But a special group—those children with Special Needs, goes beyond this scope.
We thrive on routine and predicability. The Special Needs child is no different. The safe and expected environment helps them feel secure and in control. And the past 3 months have been so out of control. The changes to their routine has been fearful and confusing for them and may lead to behavioral changes. And these are things they may have a hard time articulating.
Most of these children have been in structured schools that help them. With schools closed, they may have a limited understanding of why they cannot attend. Parents of these children are trying to manage these dynamics without the typical structure to their child’s day. There is loss, grief, and isolation. Quarantine has not been easy.
I have two dear friends I’d like to introduce to you. Perhaps this will give you a window into their world:
You wanted to know what being quarantined with a child who has special needs is like. In one word – HARD!! And that is not just from me, but from ALL my friends who have kids with special needs. All the kids are anxious and need calming. All the kids need almost constant attention. All the kids are confused and lonely. Parents who work are having a difficult time trying to do their jobs and keep these kids occupied. If you walk around neighborhoods you see typical kids outside playing with each other. Luke and others don’t have friends to play with. The parents are the friends. There is lots of grieving going on.
It is hard because of the limited understanding of these kids. Luke knows there is a VIRUS out there, that means people are sick. So why does school have to end? People are sick all the time. Why is this different? He is scared and anxious that he will get “THE VIRUS”. I am constantly assuring him that he will be ok. The only way to ensure that is to keep him home.
Luke is used to following a schedule. Everything is different now. I quickly came up with a daily schedule for him to follow and we stick to it. No deviations. Ever. It keeps him calm, which is one of my main goals.
It’s hard to have them home because they are hard to handle. Luke has more frequent tantrums, can change moods on a dime. Some of the kids need constant action and activity, some are loud and screamers, some make constant noise, some throw things.
“Home becomes a place of chaos for all instead of a pleasant type of quarantine.”
The other thing about this “quarantine” is that it is more of the same for parents of kids with special needs. We are already isolated from many activities in the community so this is not exactly new, but much, much worse. It is a constant grieving for losses that are immediate (no school means no break from Luke), Special Olympics was cancelled (lots of crying over that), to future anxieties – Extended School Year might be cancelled, which means no break from Luke ALL SUMMER). That is a very bleak outlook for parents like me. It is exhausting and you can’t just call a babysitter to help.
That is the HARD part but there are blessing. I have gotten to know Luke better than I did. I know now how he learns and why he doesn’t learn. I am teaching him to tie his shoes. We go on walks every day. He notices every blooming tree. He points things out that I would miss. He laughs with his dad and is delighted to be with dad all day. He is also forgiving and kind and fun to be with. He makes me feel beautiful because he tells me I am beautiful. Any husband could take lessons from Luke. He enjoys the smallest things. We Facetime his friends and they just delight in looking at each other. It is so sweet!!!
One things many parents have said is that it is like being locked in with a 12 or 13 or 14 year old toddler!!! That says it all.
I think the best way to describe the impact of the pandemic is to give you a little background on Jesse and then tell you some key things that have happened since our lives were suddenly and abruptly changed.
Jesse’s diagnoses of Pitt Hopkins has many issues to it. However one of the biggest for us, and the reason we fought to move him to Camphill School, is his breathing issues. He will hyperventilate and have apnea episode that are brought on by being disoriented, anxious and out of routine. So you can imagine the concern we had with the closing of the schools and how that will impact Jesse.
A little more history before I go much further. When Jesse was in school in our district he was having close to 500 apnea episodes a month at school. In the 2 years he has been at Camphill he has had almost no apnea episodes. His routine and expectations are very clear and familiar so his anxiety is down, he is not disoriented and is thriving there.
So the first day, a Friday, of the schools closing, Jesse had a tough time understanding what was happening. Why his routine was not happening and was very disoriented. He had a number of apnea episodes and was clearly very anxious. So throughout that day I gathered as much material of educational and chores we had around and made a visual schedule for him so he would know what his day would look like and what the expectations were for the day. This helped a lot for the next two weeks as Camphill, a total hands on life skills school with very little technology in the classrooms, adjusted. As they started planning Zoom meetings and such, I just adjusted the schedule.
Jesse has actually done pretty well by keeping him on an expected schedule and he is making gains on his IEP goals and everything. A couple things are still difficult. He has had more aggressive behaviors since the lock down. The cause and length is not as important as the fact that it has increased a little.
The other issue that is hard is he continues to ask to go to places or see family and friends. He doesn’t understand why and asks for the same things almost everyday. Go to the mall, soccer baseball, pool, church. We continue to remind him that none of them are open right now. He wants to go see grandparents, cousins, aunts and uncles, class mates. Zoom is a quick glimpse of them, but not enough for him.
Zoom classes and meetings are not productive for him either. He will recognize who is there but won’t interact like he would if he was in person with them.
I have enjoyed working with Jesse during this time and we have bonded even more than before. However he NEEDS to get back to school cause they can provide things I can’t. I can teach him the academics, occupational therapy, speech by following the direction of the teacher and therapists. I cannot teach him social skills and social interaction with his peers. It is just not the same doing those skills with your dad and siblings or on Zoom.
This is such a hard time for these dear families. If you are feeling restless and bored? Peek into their lives:
These families juggle the Pandemic as we do, with Special Needs tossed in. For Jesse, wearing a mask brings on episodes of apnea. This is even more restrictive and isolating.
Where does this leave us?
There are no easy answers, but there is an abundance of compassion and mercy.
Abundant Honor Ministries https://www.abundanthonor.org
This is a ministry that works with those with disabilities. They take their name from
1 Corinthians 12:23 “those members of the body which we deem less honorable, on these we bestow more abundant honor.”
God takes the things we think are broken or weak and builds his Kingdom with them.
1 Cor 1:27
But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.
Perhaps in this time of Pandemic, the “least of these” and this ministry may teach us much in how to honor and value persons.