September 28, 2004 - Joey's been home for three-and-a-half months now. I have tried many ideas, to prevent him from instantly grabbing and pulling his tube, and knock his feeding out of my hands when I come to feed him. Distracting him with new crib mobiles, bright baby videos, everything I could think of, all failed. He has it in his head that it is hilarious, and an experience not to be lost, to be mischievous (naughty) every time I feed him. Well, I do not think it is funny. I kept trying.

 Now, I have found success, at least for now! I play with him first, rub his chest, put cologne on him, say "mmmm! Smells good!" and do his range of motion exercises. He enjoys all of this tremendously, laughing and laughing. Then, I put his hands up above his head (all ready with my formula) and he will hold his hands up there, laughing so hard he can't even move, just long enough for me to pour in one can. Then he brings them down to grab, and I stop feeding, and put his hands up high again, saying "UP high!" And he laughs and laughs, just long enough for me to pour in the other can. THIS, I can say, is a success! What a thrill! I used to play with him after I fed him, but playing with him before is the ticket to success.

 Guess what! Joey now says "mum! mum!" He says this when I am going out for the night, and he wants a little more attention first. Usually, when I say "night-night," he is already sleepy with his medicine, and sleepily replies "nigh-nigh" But sometimes he says "no-no. Mum! Mum!" when he does that, I go back in, and rub his chest, and stroke his forehead, and tell him I love him, and Jesus loves him. After that, when I go out again, he's fine. I never dreamed that Joey could learn more speech as he grew older. This is so thrilling! I tried so hard when he was little, and a teenager, to no avail. But now, in his twenties, with lots of time spent, he is learning words, and how to use them!

 December 24, 2004 - Joey has learned to comprehend a new thing in the six-and-a-half months since he's been home from the nursing home. Every evening, he and I have a ritual of changing, cleaning, playing, me talking and singing to him, and giving medications. He enjoys this very much. But he has always had the idea that every time I go out his bedroom door, I'll be gone for a long time. He let me know this by stating loudly, in his man-voice - "Bye-Bye! No! No! I know!" If he's been having an especially good time with me, he would keep this up, and become louder and louder, sometimes escalating to screaming, before I could return. Despite my doubt that he could learn to wait, for this half of a year, I have said one of two things to him every time I go out of his door. Either I say loudly and cheerily "I'll be back!" Which means I'll be back within a couple of minutes or less; or else "bye-bye" which means I'm going to do something else for a while.

 Now, when I say "I'll be back!" He looks at me, doesn't say anything more, just patiently waits. He knows I really will be right back. And if I say "bye-bye" he will fuss and holler. He knows! It is so exciting to see his mind working! When the time comes to turn on his night-light (Christmas lights right now) because he is afraid of the dark, I say "night-night, Joey, I love you" just before I close the door. More often than not, he replies "nigh-nigh." And he doesn't fuss any more. He knows it's all over for all night, and there's no use.

 This marks a BIG step in our relationship, and in my personal enjoyment of him. Because if I am going out to get some warm water to melt medicines in, for instance, or to use the bathroom, I don't have to hear a bunch of nasty hollering, and come back to a sweating, screaming boy-man who may even be hitting himself hard in the face. Not any more!

 And because he is able to comprehend that I will TRULY be right back when I say I will, he has grown able to be patient; lie and wait, trusting, without getting upset! It makes both of our lives so much more pleasant! It also makes me wonder what new thing he may comprehend by next Christmas! I also praise God that Joey has been healthy all the time, never becoming sick one time, since coming home. Life gets better all the time, with God's love and kindness. Night, night, my beloved son.

 May 2, 2005 - it is now nearly a year since my son has been home from his stay at the nursing home. He is twenty-two years old now. He has finally gotten over shouting at me "SAY GOOD-BYE!" when he sees me. Now, he says "mama", looking right at me! I'm so excited! And although his saying "no" is nothing new, there is something new that happened last night. My son, age twenty-two, put two new words together, that he never did before. When I was going to leave, at bedtime, he looked at me, and said "no, mama!" I knew exactly that he didn't want me to stop playing with him, and talking to him. I responded "Nice TALKING, Joey! You don't want me to stop, Joey? Okay, I can play some more!" Then I put on his favorite DVD, and went on playing and talking a little while more. When I went to go out again, he looked at me, repeating "no, mama!" I looked at him and told him what good talking he was doing! Then I said I have to go now, and fix Caressa's medicine, but I'll BE BACK! (The words he knows.) He gazed back at me calmly, then looked at his DVD.

 My son achieved something he never did before! He voiced a desire, he listened to the answer, he accepted the answer, and decided to amuse himself, rather than scream. This is a MAJOR development for my dear little man! I am so excited. I have no one to tell, so I'll share it here. Maybe, as years go by, my Joey will learn a few more words to indicate his wishes, or pains, and a little more maturity, to wait when the answer to a desire is no. Oh, that is so exciting!

 May 15, 2005 - Joey has learned how to whisper! Of all things! You see, it has been my habit for a long time, to whisper to him, but after all these years, I really did not expect him to ever copy me. When I come to him, to feed him, he has always raised his voice in loud protest. The last several months, when he yelled to me, I have whispered back. Mainly, just his name "Joey ... Joey ..." and he would look at me, and usually stop yelling, at least for a moment, and smile. For the last week or more now, he whispers back - "mama ... "!

 At the same time, he has not been grabbing the tube either! He's been keeping his hands down when I come to feed him, for the first time in his life! So his feedings have turned into praise sessions. "Joey ... you're so good!" I whisper to him. He whispers back "mama ..." and smiles. I whisper "you are helping mama, you are not grabbing! Thank you! What a good boy!" And he whispers back "mama ..." and keeps his hands down. It is the most amazing thing. So it is a fact, that just like the rest of us continue learning, as we age, so can some people with profound retardation. I never knew that, until mine became adults, and I am seeing these new skills develop, with my own eyes! Of course, it all results from consistency. The same person caring for him every day, with the same rules, never changing. That can probably only happen at home.

 October 22, 2006 - Joey is developing a tender voice when he says "nigh-nigh" - he draws the syllables out slowly, with a sweet tone, and it is so very nice to hear! Instead of fighting night-night time, he is not only cooperating, but giving me something sweet, in exchange for my stroking his hair, hands, and chest, and singing to him. He looks at me with a smile in his eyes while he says it, too. This is the closest thing to love that He has been able to show me in his life. It is a real gift. I tell him I love him every day. Do you suppose I could begin to entertain the faint hope that someday, someday, he might say he loves me?

 Joey has gotten over almost all of the negative behaviour he picked up in the nursing home. He's been back home two years and four months. I think it safe to say that he is now the same son as before. It is now, as though he has always been home. I can finally peacefully allow that experience to float away.

 Year after year, I give Joey a sneak taste of something yummy. He'll never allow it if he knows it's coming, and he'll clamp his lips together like a vice. It has to be on my finger, and I have to swipe it on the roof of his mouth quick as a wink. Then I watch his face go into all kind of expressions, first disgust, then anger, then boredom, then finally mild interest. He never, never expresses anything positive, like, for instance, tongue smacking. I guess I have to make do with "mild interest". That's my boy! He can't help having been born that way. Thank God for tubes.

 He still does not like to be in his wheelchair for long periods of time. His head hangs forward, so he must look sharply upward with his eyes, to be able to see anything except the ground. He must be strapped in firmly so he won't slither out, and thus, he is very stuck. He much prefers the hospital bed, where he is busy with the rails. He can pull himself up to a half-way sitting position on his left hip, using his right hand (the stronger one) on the left rail. From that position, he can see out his lovely big window, all around the room, and the TV from an upright view. He stays there quite a while sometimes! He also works at turning around to the other end of the bed as he used to do as a child, but he's too long now, and always gets stuck. When he gets to that point, he hollers for me - "Ma - MA!" With quite an urgent, and almost imperative tone! I come and see that he really needs me, and help him get un-stuck. It is a real thrill that he can call me by name now, and with an intense tone that tells me he really needs something! I worked on this all during his childhood, but apparently, he just needed more years before he could achieve it. He's twenty-three.

 December 7, 2006 - All year I've been trying to talk to Cassie, Caressa and Joey, about Jesus, in a way they could possibly understand. My mother - their grandma gave me the idea. She asked me if I thought there was any way to reach Cassie's spirit, to teach her about Jesus. I didn't think so. But I have been singing simple children's Christian songs to all my children at bedtime all their lives. So, at bedtime I began to add words of Jesus' love directly to each child.

 I began to simply tell these, my adult helpless children in this way: "Jesus loves you. Do you love Jesus? I love Jesus. Joey loves Jesus, because Jesus loves Joey." In this way, I am giving him words for a feeling he perhaps understands very well, deep inside. I tell him that Jesus is so good, and so loving, emphasizing His love for Joey, just in case he knows what love is. I've shown him love, and he shows it in return, but whether he identifies those feelings, as described by the word "love", I don't know. I tell him about Heaven too. I say "some day, Jesus will come, and we will go to Heaven, and guess what! Joey will be able to walk and talk in Heaven!" He shows no response, but at least he has heard the gospel, in the simplest form possible. One thing is certain. Jesus can move his spirit, and make Himself known to Joey without words. I am sure that He either has, long years ago, or still will. My children are so peaceful, and so happy. It is not only my love that helps them be so, I am sure. It is Jesus, loving them deep inside where they can feel it. I will continue. It is our family worship.

January 21, 2007 - Joey and I have been having fun this afternoon. I got behind on laundry, and so I had to open some racks in his room, for clothes to dry. He loves to reach out, and carefully, meticulously pull off a shirt when I hang it on. He is very serious about this, so I pretend he is helping me. If he was chortling with mischief, I probably wouldn't enjoy this. But I think he's trying to help. So I put the rack so he can reach, and each time he pulls off a shirt or something, I pick it up out of his lap, and thank him, and hang a different one there. With such intense effort, he uses his most useful hand, stretches out his arm, and pulls the clothes off. He looks at me with serious brown eyes then, and I say "oh, thank you, Joey! You're helping mom!" It's fun for me to have found one more thing that interests him to stretch that arm, and use his hand, too.

 September 22, 2007 - Joey learned to say "Ike" this year. I am not certain, but I think he means "stuck", because when he starts saying "ike, ike", he is always wanting a change of position. It could be that he is trying to say "stuck". When I get an idea about a child's meaning, I usually make a note, and after a few months, decide whether I am right. It might take more than a few months with this! He's 24 now.

December 18, 2007 - Well, I found a new way to keep him from grabbing his tube while I feed him in his bed. I roll him on his side, get behind him, and vigorously roll him back and forth with one hand, while I hold the syringe with the other. He begins to laugh, and thoroughly enjoy this play, forgetting to be naughty. I can let go just long enough to pour in some more from the can, then roll him again. The only trouble with this is that he loves it so much that he roars and howls and sobs with disappointment when I stop. I'll write more than I solve this! He loves to have his body moved, the wilder the better. When he's in his wheelchair, he loves me to "dance" with him. Any music will do. I hold both his hands, and swing them back and forth, singing, and smiling at him. He laughs so hard! I've done that ever since he was tiny. He'll be 25 next month.

July 26, 2008 - Last February, just after he turned 25 years old, I began experimenting with adding some baby food fruit, then vegetables, to Joey's canned formula. It did not cause him to have any additional reflux. Instead, he WAS able to cope with a few additional ounces per feeding. This was remarkable, because he would be flung into gagging reflux whenever I tried to increase the volume of canned formula at a feeding. So I began reading about nutrition, and experimenting more. Little by little, I tried more food, and less canned formula when I had replaced the protein, etc.

Now, Joey has been on complete blended formula diet for about four months. He receives all his nutrition from my cooking, and I give him supplements, vitamins, cod liver oil, etc. Here is the most amazing thing. He can consume with no problem at all, 50% more than he ever was able to before. In other words, instead of his maximum tolerance of 16 ounces at a feeding, he usually takes 24 ounces. On top of that, he is off all of his stomach medicines! I eased him off the medicines before I started trying to increase his volume. I was ready to reverse all my efforts at the least sign of trouble. There never was any. I am truly astounded.

I have not dared mention this to his doctor yet, because I can't run the risk of having his insurance stop paying for his enteral supplies. I'm still kind of expecting him to start gagging again, and I'll have to back off, and start his stomach medicines again. However, there is a chance he will continue to digest mom's cooking, and that is very exciting. He knows the difference. If I bring a can over to him, he angrily shouts "NO!" If I bring a feeding cup, he looks, watches, and usually does not say no. I put it by his nose and let him smell it. I use lots of spices, so it will smell nice. In his hot cereal, I put lots of pumpkin pie spices, (nutmeg, cloves, cinnamon), in his peas, mint, and etc. I've never used so many spices before, in cooking for my other children. I read that it is possible that a person can taste what is fed them by tube. I never dreamed this! Joey has lived all his life on vanilla. No wonder his body is sick of it! One thing he apparently likes to smell, and maybe taste via tube, is chicken and yams blended together with a touch of cinnamon and butter.

I located a net group of parents who are doing this too, and joined it. There are nearly 350 parents on this group! It is absolutely fascinating to discover that I am not the only one. I am doing this with my daughter Caressa also. One interesting thing to note is that on the exact same diet, Caressa has gained weight, and Joey has lost some. Caressa is also off her stomach medicines, tolerating a larger volume, and not gagging and vomiting any more! I am giving Joey higher calorie additions to his diet, and watching him closely. He uses up an enormous amount of calories for someone who barely moves!

The most exciting thing,beyond his feeling better, is that he will now often smack his lips, and do something with his mouth that appears to be tasting, when I feed him. He has never smacked his lips before. So feedings are now a pleasant experience, instead of a time when my feeding him makes him cry and roar, and gag.

July 27, 2008 - This morning, Joey did something he never did before! First I saw him push on the open window by his bed, with the backs of his fingers, and it moved a few inches. I praised him, because I never saw him do that before, and he burst out laughing. So when I got done lauging with him, and praising him, I said "okay, shut the window, Joey!" He turned his head immediately toward the window, reached out his hand, and pushed hard again, and it shut about 8 inches or so! Then we laughed together again. My son experienced a new victory! The most amazing of his whole life! Who would have thought that after 25 years of life, this child would learn something new! He understood the words, put them into action, and obeyed the command! He also found this very funny! Amazing.

August 28, 2008 - Well, Joey has progressed to doing something he never did before. For two weeks, he has been reaching his hand toward the cup of blended food when I come to tube-feed him. It was a different kind of reach. He did not have the rebellious face. In fact, I would maybe call it a curious look.

I want to emphasize here, that Joey has NEVER had any trouble aspirating or swallowing. He does not drool. His refusal to eat is ALL EMOTIONAL. If he had any problems swallowing or choking, I never would have tried what I'm about to tell you.

So I began putting the tip of my finger in his food, and dabbing it on the tip of his tongue, smacking my lips, and saying "yum! yum!". He would shake his head violently back and forth, and yell in anger. But the taste was in there. I wondered what it must be like for him. (I have tried wiping a bit of food on the roof of his mouth time and again over the years, with no success.)

After that two week period or so, he still flopped his head back and forth, but only made one squawk. Then, miracle of miracles, he closed his mouth and swallowed!

For about a week now, he has been letting me put the dab in without fighting. Then, he's been closing his mouth after the dab, and swallowing. More than that - he puts his hand back to the bowl another, or even several times, for which he gets another dab, one for each reach, over a five minute period or so. He has never permitted a spoon anywhere near his face, but my finger must be different for him. I believe he is actually enjoying tasting my cooking! I actually believe he reaches for the bowl so I will put a dab in his mouth. I can barely believe this. It may pass, like some of his other achievements, but I'm certainly enjoying it while it lasts!

October 20, 2008 - It is really true. Joey is really smelling his food on purpose. When I bring the measuring cup with his food in it, and ask "do you want to smell?" and put it near his face, he purposefully sniffs it. A few days ago, he even lifted his head, to put his nose in the cup, and sniffed audibly. It's truly amazing.

December 1, 2008 - For the record, Idaho stopped paying for disposable diapers and liners today. I have to buy cloth diapers and liners now. I guess this is my part, in helping with the declining economy.

January 4, 2009 - Joey is twenty-six years old today.

January 25, 2009 - Well, these huge cloth diapers and liners for Cassie, Caressa and Joey do NOT get clean in our front loading, large capacity washing machine. Partly, I'm sure, because there is no hot water to my washer. Thus, I now have an old wringer washer in the kitchen. This is good, because it will wash as long as I want it to, and in hot water that I can heat on the stove if I want to. I wring them out, though they do get stuck sometimes, with all those snaps in the wringer. Then I drain the water into buckets, and dump them, and start over, to rinse. Of course, drying them without a dryer is interesting. It takes a good 24 hours to dry one of these diapers, hanging on a rack by the heater. I don't have quite enough of Cassie's diapers yet, but I do have enough for Joey and Caressa.

However, when the POWER goes out, or the WATER goes out (the well doesn't work if the power is out) I must use disposables. So I must keep an emergency supply on hand.

Here is the page where I'm starting to write about cloth diapers for adults. https://www.angelfire.com/journal2/caressa/ClothDiapers/ClothDiapersAdult.html