Sunday, April 30, 2017

Truly Aware

Today ends another Autism Awareness Month. As many autism parents point out, every month, every day, and every minute (all 525,600 of them in a year, as Alex reminds me) mean autism awareness for our families. Beyond the blue lights and puzzle piece ribbons is the reality that more and more children are being diagnosed with autism, and the mainstream medical community seems to offer no real reason why. Moreover, the educational system and therapeutic support systems cannot handle the influx of all these kids with autism. As they age out of the educational system, programs for adults with disabilities cannot handle them, either, and many are not getting the services they need. That is true autism awareness.

Like many parents of adults with autism, we have our beloved son at home with us, requiring 24/7 care. He needs structure and routines to keep his anxiety from escalating. In fact, we keep a schedule posted on our refrigerator door for him to consult anytime he is concerned about what will happen next, even though he knows that we honor his precious timetable.

9:00 A.M.—Get up, take pills with juice

10:30 A.M.––Eat breakfast

11:00 A.M.––Brush teeth

11:30 A.M.––Eat lunch

12:00 P.M.––Change clothes

4:30 P.M.––Decide what’s for dinner

5:00 P.M.––Eat dinner

6:00 P.M.––Take vitamins; bath time

7:30 P.M.––Have dessert/snack

10:00 P.M.––Take pills, brush teeth, bedtime

Just to clarify, Alex needs help with every single item on this schedule. He takes a dozen pills three times a day and needs us to administer them to him, even though he can thankfully swallow pills. Because his hands shake from one of the medications to keep his anxiety under control, and because he has poor fine motor skills, he cannot pour his own drinks or prepare his own food. He also lacks motor planning skills, which means he needs help with brushing his teeth and changing his clothes. For this reason, I think of our family life in half-hour increments, knowing that Alex will probably need Ed or me to help him with something in the next thirty minutes. In addition, he has other tasks he assigns me at specific times, such as working the newspaper Sudoku puzzle at 1:30 and watching Jeopardy with him at 3:30. Also, his afternoons are scheduled with therapy sessions that I coordinate for him. Although he has become more patient over time, he values punctuality and can become unnerved if his schedule doesn’t go as planned.

Mind you, we are extraordinarily lucky parents in the autism lottery. We have a child who can verbalize––albeit awkwardly––what he wants and needs; only about half of people with autism are verbal. Unlike half of people with autism, Alex does not wander away from safe places so that we don’t have to worry that he’ll drown in a pond or get hit by a car in traffic or a train on railroad tracks. We are also fortunate that he can use the toilet independently and does not have chronic diarrhea or constipation, as many with autism do. Moreover, he doesn’t smear his feces as many do; he even flushes the toilet and puts down the seat, so I count my blessings daily on that score, especially since he was thirteen before he was potty trained. Also, we are grateful that Alex has overcome the sleep issues that plague many with autism so that we can all enjoy a good night’s rest that many families cannot.

God has also blessed us with a tremendous support team of professionals who genuinely care about our family and have helped Alex make good progress in his skills. Sadly, many families do not have these essential resources to help them. After dealing with extreme anxiety that fueled aggression, proper medication and therapy have allowed Alex to cope with his emotions so that he can enjoy life and so that we can have a peaceful family life. We know just how precious this existence is.

While we truly appreciate the progress Alex has made, we know that many families face struggles every single day because of autism, and we can empathize with the frustration they feel. I know how overwhelmed I can feel trying to meet Alex’s daily needs, and I can imagine that those with children who have even greater needs must be even more frazzled. We need to move beyond autism awareness and autism acceptance to autism action. Something needs to be done to help families cope with the daily burdens of autism: more useful research, more funding, more resources, more support. In the meantime, I continue to pray for a cure for autism so that Alex and others with autism will be healed completely and their families who love them can enjoy more abundant lives, freed from the obstacles autism presents. When the need for Autism Awareness Month disappears––now, that will be truly something to celebrate!

“O Lord, if You heal me, I will be truly healed; if You save me, I will be truly saved. My praises are for You alone!” Jeremiah 17:14

No comments: