A Day With Clay

This is a different type of post. Some are curious about the extent of Clay's care and what it involves. So regardless it is difficult to share some of this I do in the event it helps educate why it is so crucial that families find solutions to help cope with the tremendous responsibilities. A day with Clay will involve: diapering including an evening bowel regimen, (Clay is large and not capable of standing or sitting so toileting is not a workable option) gastrostomy feeding.....he has a feeding button that stays in his lower left abdomen that resembles a plug on a blow up beach ball. To this we attach a length of tubing and a large syringe which the liquid nutrition is poured into. This is done four or so times daily. He requires bed baths daily and his daddy will shower him in a special shower chair a couple of times a week. His teeth are a big issue because he does not eat so he does not get the abrasive natural cleaning of food against his tooth enamel as he chews. He has a lot of sinus drainage and a tremendous gag reflex. His teeth are misshaped and almost always coated by very hard and thick yellow plaque. It is the only thing that detracts from his incredible good looks and great, huge smile. Occasionally we have to go into Richland Hospital as outpatient to have his teeth examined and cleaned in a Dental Operating Room. This is never fun but does become necessary with time. He has to be dressed. He has a queen waterbed in his room which is totally enclosed for his safety...........Clay moves around all the time with movement he has little control over, thus the need for enclosure. We have a sling patient lift which is operable from the ceiling from over his bed through his doorway and down the short hallway to the recliner he sits in at home. He straddles the recliner sideways and puts his head on the right arm rest with his legs hanging off the left side. When he is in his recliner he is on his lap top computer communicating and having fun. He accesses it with a switch that is placed by his face and the computer screen scans and he clicks the switch with his face/head to select as we would use a mouse on a screen to move across areas. When he tires of the recliner he will normally go back to his bed or perhaps we are going out and we will put him into his power wheelchair. The photo of Clay does not show his chest straps that are normally in place to keep his shoulders back and his upper body stable. His arms are both strapped down on his arm plates. He has a lap belt and his feet are strapped. In addition he has a knee block that keeps his knees in proper position thereby keeping his trunk in proper and stable position in the chair seat. He has to be in his wheelchair to be transported at all times. We have a large van adapted with a lowered floor, a high top and a wheelchair lift to get him into and out of the van. Sometimes he likes to eat small portions of foods that do not require a lot of chewing. He often likes to drink iced tea and coke and even sometimes he will ask for coffee and he is the only one in this household that drinks it! Most nights he is awake for large portions at a time. Sometimes he is just 'chatting' and laughing and 'dreaming while awake'........other times that we find difficult are when he is having muscle spasms and / or is physically sick, most often with sinus related things that make the gag response super sensitive and often occur continually during the night. Clay handles all these things better than you could imagine. He handles these things much better than his family that takes care of him. His mental ~ intellectual state is normal for his instructional time and life experience. He verbalizes some things, but not nearly able to verbalize as we wish. He relies on his computer much of the time to really express himself to others. We have learned a lot of what he is saying or trying to say verbally, as well as his expressions. More often than not, Clay has a huge smile on his face and he is extremely happy to be who he is. Maybe once a month or so, he will have a true 'melt-down' that will involve tremendous sobbing. It runs it's course and then more times than not, he is over it. Think about not being able to vent your frustrations except in this manner! We try really hard not to become frustrated with him when these moments occur. So that is a day with Clay. If anyone has questions please feel free to ask them. We are trying to find resolutions for individuals like Clay who require so much total care. Services that would provide outside interactions with his peers and solutions to address respite concerns. In August Fred and I celebrated our 28 anniversary and got away for two nights. It had been over five years since we had been alone without Clay for a night (a few individual time outs with work or friends, but not away or even here as just Fred and Annette). Finding solutions to care beyond several hours at a time is very difficult and takes a toll upon his parents' freedoms to get away and renew their couple time. Often if you see us we are indeed a threesome. Not always a hindrance..........just sometimes you need to be a couple without your child; especially one who is twenty-two and requires constant care. I hope I expressed this as I want it expressed. Perhaps the better term would be as I hope it is received. I do not want our family to be pitied in any way, however empathy is always accepted. We do ask that those who read this posting will lift some extra prayer intercessions on our behalf. He is calling me from his room.............guess I need to see what he needs........;)