Hats Off to Special Needs Parents

We have nine grandchildren. These four have special needs, all different. Three more grandchildren also with special needs. Our family gatherings are always "special" with unique diets, sensory limits to monitor, and mobility challenges.

Hats Off to Special Needs Parents

I want to shout out today to special-needs parents.  God bless them; they have their hands full, and their energy tanks empty most of the time.

These caregivers play a dual role as both parent and caregiver.   In that role, they are often criticized by everyone they encounter—especially if their special needs child has an invisible illness.  Of course, if the child is not wearing a brace, sporting a tube, or riding a wheelchair and “acts out,” witnesses to an “event” assume the child is misbehaving and label the parent with poor parenting skills.  Instead, the observer is likely witnessing an appropriate response to environmental stimulation based on the child’s diagnosis. 

The observer is also seeing a parent who is attempting to:

(1) help the child deal with the stressor using whatever limited tools they have within their immediate toolkit and

(2) trying to keep from becoming the center of attention wherever they are so that their child is not embarrassed.

The picture with this post is of four of my grandchildren.  Each of them has special needs. Three of them have conditions that can become life-threatening in less than an hour from start to finish. By looking at the picture alone, only one of them appears to need special accommodations to participate in school, church, scouts, or any other activities of childhood. They easily blend in with everyone else.  However, a ton of preparation time is required to help make it possible for them to participate in these activities.

Special needs parents have a tough job.  They want their children to be children.  They want them to get dirty, to run and play and fall and get skinned knees just like when they were kids. They do not want their little ones to be worried about getting infections or becoming exposed to chickenpox.  However, if they ignore the risk and don’t teach their children how to advocate for themselves, their child might die.  

Therefore, special needs parents must take precautions every day, which makes tomorrow – the first day of school – especially hard.  Tomorrow these four grandchildren of mine go back to school for their first day of this new academic year. In preparation for the big event, each of them received an Individual Education Plan (IEP) that included details about their medical conditions. Emergency information is everywhere.  Contact phone numbers with back up numbers are in place. Everything is ready to go, but it’s such a scary time ahead.

Two of the four will probably only make it a few weeks into the school year before they get pulled out. As soon as infectious diseases like flu start popping up, they must leave because it’s too dangerous for them to be there. Even illnesses like norovirus and frankly, the common cold are a significant risk.  Two of them have conditions where their bodies do not store energy reserves in their cells.  They must eat continuously to get energy.  One gets nutrition through a combination of total parental nutrition (TPN), tube feeding, and oral intake, and the other must eat every two hours.  Both have a second diagnosis (gastroparesis), where the stomach stops moving. When gastroparesis develops, what they eat does not get digested. The child that eats every two hours has no means of getting food. He is especially at risk if he gets a cold or other illness because he has no method of getting nutrition if his stomach stops functioning. Therefore, his school plan involves meticulous attention to handwashing and separation from children who are coughing and sneezing.  They are also supposed to watch him for changes in skin color and darkness under his eyes, and other signs of fatigue or dehydration.  Imagine if you are teaching trying to keep up with all of this? Imagine if you are a Mom expecting a teacher to keep up with all of this knowing the burden she has in the classroom?

In my opinion, there are no more significant planners in the world than special needs parents. They must be thinking ahead at least 4-5 steps all the time. They are also excellent detail people. They can detect subtle changes that you and I would not recognize. I am in awe of them.  They also run on empty – all – the – time.

 They are emotionally drained, physically tired, unappreciated, criticized, and so tired of having to continually fight for everything they need to take care of their little ones.  They spend HOURS on the phone with insurance companies just to get the essential items they need in the size they need to care for their child. It would seem to be common sense that a child cannot wear an adult size harness for a piece of equipment. Right? Tell that to the insurance company.

Special needs parents are fantastic and remarkable people. They endure more than most people can ever imagine. The next time you’re in the store and a child is “acting out,” cut the parents some slack. There’s probably a story behind that event, and the child might just be excited and not misbehaving at all!

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