Saturday, October 16, 2010
Big Brother is really growing up! He's acting so much older and his role now is protector and helper/caretaker. It's just the way Big Brother wants it. I've reminded him a thousand times that he needs to focus also on himself and that he's also a little boy but he wont have it. He knows his brother needs lots of help and Im certain he will always be there for him.
Big Brother is doing well in school and loves all sports now! He's quite the football player. Rough and Tough. All Boy!
Trees- I forgot to mention, KC is terribly frightened of trees. Any and all trees! If a tree branch comes near him or touches him he screams and acts as if hes about to vomit. Not sure what happened. He's just constantly looking for any tall grass or anything remotely similar to a tree. Its sad because he goes in to a panic and the tears flow. Im hoping it passes,
We hope you and your families are doing well! Time to do some catching up!
Thursday, July 15, 2010
It's happened. K.C.'s had got an infection in it. Took him to the burn center in Phoenix, he had red streaks going up his arm. It was AWFUL. I'm at home and he's still in the hospital. I had to hurry home and shower, he's finally fell asleep and a child life lady promised she's stay at his bedside til I come back. She's been so wonderful. K.C. really seems to like her. She's brought him movies, connect 4 game and puzzle books. He's been crying lots since surgery, he had a graft done and has tro have one more next week. He kept ripping his I.V. out everytime I dozed off. I am sooooo sleepy. His Dad will be here tonight so when I go back to the hospital tonight I will be able to come home and sleep. I just need 4 hours and I'll be good for a few days at least. K.C. had a PICC line in. It goes under his arm and into his chest artery. They put it in in surgery. He can't get this one out. When they change his dressing they give him oxycontin 30 minutes before and they won't allow to to go in. They say they want his hospital room to feel as a safe zone where Mom is and the treatment room the not so fun room. It's been such a whirlwind. I'm sorry if it's a rambled post but I really wanted to keep everyone updated, you all are like a big family to us and we need as much support as we can get. It helps so much since we don't have family here in country anyways. The Boys are with College Boy right now. He's been our friend through alot. It's just temporary til their Dad is home. It's just after eleven p.m. and his Dad will be here around 4 a.m. Then I got a letter in the mail saying the boys Open Houses are next week for school and we must attend. I'm feeling overwhelmed and scared to death for K.C. Well thank you all for listening to me vent again.
I haven't talked to the respite person who was supposed to be watching K.C. they day he was burned. I have gone to the police and they are going to investigate and talk to her. God Knows If I "talk" to her I may throw hot boiling water on her hand. I'm just so mad she has been hiding out more or less and hasn't called once to check on K.C. if this was an accident as she says. The police will talk to her. I'm trying my best to let the anger go and concentrate on K.C. but everytime he cries and hurts I remember how we can't find her and get pi$$$$! I will keep you all updated. Have a good night everyone. Prayers all around.
Sunday, July 11, 2010
I am writing to vent today. I had mentioned in my previous post that I was going to take Adman and Big Brother to see Despicable Me and the theatre. We did go. Not half way into the movies K.C.'s respite worker calls and says to come home right away he had gotten burned on hot soup and she was heading to the emergency room with him. Panic stricken I must have drove 90 miles per hour to the ER where we hurried in to the front desk dragging A very pissed off Adam and Big Brother trying to help control Adam and calm him from the very fast change and an end to a movie he thought he was going to see through. Big Brother a little over 4 1/2 feet and Adam nearly 5 feet 9 inches, it was tough. We managed. Big Brother found a waiting room with a t.v. and VCR where Pinocchio was playing. I ran to check where K.C. was and the nurse directed me to the room he was in. Screaming he was, trying to bite his burned hand and two nurses trying to calm him. The Dr. came in and gave him a shot which worked wonders, sedated him. I couldn't believe my baby was hurt so bad when I thought I had the best person watching him. Where was the respite worker? NOT WITH K.C. The nurse said she had left the room to FIND ME as I was coming to the hosp. THE B**** never came back! She F****** left K.C. I'm sorry for the language I'm just so pissed. I was crying, felt so god awful bad for going to the movie and leaving K.C. This was a person I had trusted to keep him safe. The nurses say his respite worker was cooking Ramen soup for K.C. when he reached up and pulled the pot handle off the stove. Hot liquid spilled all over his little hand, the top layer just feel off. The hosp the transferred us to a burn unit downtown Phoenix. They scrubbed that burn hard and put on a 'new skin' and prescription ointment and painkillers. He's been crying and crying. Now I feel bad for just leaving Adam with Big Brother. I have no family here since my parents are both passed away now. I talked to Big Brother and he said, "Mom I wouldn't let Adam get away for my life." I cried and cried. I need someone to talk too. I'm making an appointment to see counselor. I'm overwhelmed. Need more help with the boys. Our last in home helper moved to Michigan. I miss her terribly. She's finishing up her degree there. Ihave to find help. Good help. But first I am going to do everything in my power to see that the respite worker who watched K.C. is in serious s*** and should not be around another Autistic child again. How do I even know that is what happened? K.C. can't tell me. Prayers people we need prayers.
Friday, July 09, 2010
Our kiddos had a great 4Th. KC tolerated the sound fairly well. We parked far away to minimize the noise. Visited town square for a bit then headed home. He spun in circles most of the time but no crying. I'm not too sure if he was overstimulated or? Tonight I am taking Big Brother Ad Man and a friend to see Despicable Me. How I wish K.C. could tolerate it. I feel bad for leaving him. We go real late, usually after 10 p.m. when he's asleep and have his respite care giver watch over him as he sleeps. He wakes alot and we now have locks on EVERYTHING. This months tally: K.C. destroyed the buttons off my cellphone, picked them off, tore the knobs off the washer, actually picked and picked at our couch til he pulled the insulation out and finally he broke the hose from the washer to the wall outlet and watched water shoot out of the wall. It was horrific. What a flood. Took the day to fix. I did it myself though! Big Brother and I are quite the team of repair people. Now there are locks everywhere. Told Big Brother he just has to get used to it and Ad Man HATES THE LOCKS. Change is very, very hard. I still don't understand why K.C. destroys things that he seems to love dearly. Even his own stuff. Labels on bottles, cans etc he's compelled to pick. His lips too. Even teeth. His lips are always rough. I try to sneak chap stick on them when he sleeps but that boy wakes at the slightest touch. We found a movie he adores. Coraline! He loves it so much. I highly recommend it! If K.C. loves it it must be good! Happy Day All!
Thursday, June 17, 2010
Happy Birthday to you KC! You are 9 years old and 4 feet 6 inches tall, 101 pounds! You are changing quickly I have noticed. The hair on your arms and legs is getting longer and darker and much to your big brothers (oh mom that's not fair I'm older and I want arm pit hair!) attitude you are growing up faster than your big brother! You both are the same height now. Big Brother is worried about that. He wants to be very tall but his Daddy is only 5 feet 5 inches and Biological Mom is 5 feet 3 inches. KC may be taller because of my side of the family.
You can do many things for yourself now. You can pull your shoes on by yourself and socks too but always put them on the wrong feet, same with clothes. If they are inside out backwards etc. you don't notice at all and will wear them like that if I let you. You carry your dishes to the sink sometimes without me asking you too. Sometimes you throw your spoons and plates in the trash. It's hard to know what your thinking. You know many signs now. Sign language and hand pulling are your primary ways to communicate. Words never came to you and I am sad about it. Of the couple words I heard you say once they never came again. Never. I know they are in your head I can see you trying to think things through. We won't give up! Speech therapy will always be in your future cause I know it's possible cause I have heard it!
We had an extremely frightening day a month ago. I've not mentioned it to anyone. I'm still very unsure as to what I should do. I'm scared to mention it to your therapists. You were watching a Disney video on the computer and I was in the kitchen. I heard you scream a little and I new that was the "I'm getting angry" scream. I came into the living room and checked out your area and you too. I asked you, "what's wrong?" You looked frantic. I thought if I let you alone it would pass. Big mistake. You came into the kitchen and screamed super loud in my face and pulled your hair out. I have never seen you this mad in my life ever. To look at me in the eye without breaking eye contact for more than 2 seconds is just something you do not do. Even though I had REAL eye contact and I could totally see the boy without Autism in you at that moment, it vanished. You went straight to the kitchen sink and sat in the living room screaming with a butter knife in your hand. I don't know what to make of it. I don't want to think you want to hurt me. I put the butter knives away for good. Since them you have been o.k.
I did notice a couple wks after you got a fever but no other symptoms like coughing or runny nose. What I did notice this time was that when ou were sick you were more with it. You seemed to have better eye contact and strangely more calmer. Two very strange episodes. If anyone has any ideas please pass them on for KC's sake?
You let me hug you as much as I want these days and I am happy as ever for that! I can even say, "hug" and you walk backwards into me and let me hug you. No straight forward hugs though only backwards, you are a funny guy.
I was watching the "On Demand" feature on our cable TV service and as I browsed through the list you ran straight to the TV and touched "Shrek." I turned it on straight away and praised you endlessly. Your speech therapist made a list of Disney movies mixed up with regular words and you could pick out 25 Disney movies from that list! I'm thinking you can read I really believe you can no matter what anyone says. I was amazed! Your speech teacher seemed to be not so impressed and though it to be another Autistic Trait. Whatever. You read and I am thrilled. If you can point at a group of words mixed in with regular words and pick your movies by touch that's still reading! It gives me hope!
Ad-man is doing great! I keep him so busy he's hardly home but the thing is you love your routine and stick to it. KC doesn't like to leave the house but you do lately. You pace by the door. We had to beef up our security system because you are tall and able to reach things with ease. You still paint and paint and paint! You are very talented. We still have to help dress you but when you pick up that paint brush you are free! I couldn't even begin to paint like you do. Too bad Mom didn't get to see it.
I will close for now, need to get KC to put his clothes back on. Anytime he sees me get busy he strips and runs around naked. Big Brother said, "oh God mom what if he does that when he's a man?" He's right, I have to keep this kids clothes on him at all times. Hope you all are well and hope I didn't ramble too much! To all our friends much love to you and your families.
Thursday, January 28, 2010
It's been awhile since I last blogged. We have been doing well and the boys are growing like weeds! We traveled twice, the first time was to be with family in Israel and the second trip was to just get away for a couple weeks. KC does well on trips only if his doctor gives me a sedative to give to him just before. Long trips are very tough on him so God Bless his doctor for making it possible. Adam my little brother is used to flying pretty much. My Parents used to go quite a bit and as long as he has something to watch he's good (and that he gets a window seat as he looks and looks endlessly.) Big Brother is a chatterbox and his questions come at me left and right, he's changed quite a bit just over the year and has become someone who can outwit his Mom and pull the wool over any one's eyes. My dear friend College Boy has taken to calling him, "Scamp." Big Brother has a huge heart and listens to him Mama well. I know one thing for sure and certain, no one will take advantage of him in life or his brothers as long as he has any say in the matter.
K.C. has been eating everything he can put or fit in his mouth lately. Pennies, buttons on his clothes, even steel buttons he will try to chew off. I've caught him licking the walls and totally rushed with a wet wash cloth to wipe his tongue off. He's been healthy so far which surprises me because of how much he;s been putting in his mouth. We went through the entire house looking for anything he may eat or could choke on. This all happening within a two month period. It's getting terrible. Icky germs. I did get all the boys swine flu shots and seasonal flu shots. Lysol is a must now more than ever.
KC has also learned to put his own underwear and shorts on. He's been totally dry and will wear underwear all day long! As for going number 2, no way. He will hold it, be in pain rather than sit on the toilet. He's terrified of siting on the toilet. He literally shakes and screams. I feel so bad for him to see him so scared and wind up putting a diaper on him just for going poop. I'm not sure how to handle it just yet and I don't want to push him and ruin everything he's accomplished so we are taking it slow. I'm thinking when he's ready we will know.
Still not talking. Not a word. Not even close. Not to many sounds come from him, when they do they are garbled raspberries. I've come to accept that he may be nonverbal child forever. He does communicate with some signs and pictures. Pictures mostly. He knows his pictures are his way of communication and when he hands me one or I lay out choices of foods, like three choices he will scan them and hand me one. He's learned, "just one." We have our picture book everywhere we go. Even McDonald's. I've been through that drive-thru so much and as we approached in the past I'd always say, "do you want Nuggets or Hamburger?" I'd get total silence. Then came the picture book as I call it. His teacher and I printed up some McDonald's foods and he can surely pick one! I feel so much happiness knowing KC actually got what he wanted without a doubt! The happiness may seems so small to outsiders of the Autistic world but to you Mom's and Dad's and Brother's and Sisters know how good it feels and how their siblings clap and get excited for our kids with Autism.
Another change I have noted on KC but NOT big Brother. KC is almost 9 and Big Brother will be 10. KC has arm pit hair already! His legs have dark hair too! I was horrified. He's so young. Anyone else notice this on their kids? Big Brother noticed when they were taking a bath. He said, "Mom I'm older than him why is he turning into a man already?" O.k. that statement made me chuckle but still I had to say, "That's just the way God made him." Then he said, "Like his Autism too?" I agreed. I mean I wonder too but this was a good enough explanation for Big Brother and he didn't press but did look at me and as I said before he's a chatterbox, "Him KC has kinda bad luck Mommy." I didn't want to keep it going and for once he didn't press on. Maybe it was the look I gave.
Adam hasn't pinched in a month and a half! He used to pinch like crazy. We think we got that beat! He has chewy tube and his hands are always on it. It's a foot long as it was the ONLY one he'd take. He's happy with it and that's all that matters. We are happy when he's happy. He's painting alot, beautifully I might add. He has a gift from God when it comes to painting. I buy him the best paints money can buy, his room as you walk in is gorgeous. We are starting this weekend to have his walls painted white and nice and clean and then have him prepped (as it may take awhile from hs paint instructor (who has been wonderful working with Autistic kids and says that Adam has Savant skills in painting!) Do you know how proud I am? I knew this before he even told me. I've watched him.
Anyways back to his room. We are having his room painted white and we are going to try to get the idea across to him that his room walls are his canvas. I'm not sure how long it will take but I know he can do it with his teacher at his side. I want Adam to make his room come to life with his artwork all over his walls. My Parents would have been so proud and honestly I think I can imagine my Dad's mouth hanging open in amazement. My Parents sheltered Adam somewhat and he was limited in what he could do. I see no limit in his ability to do art.
I have been doing well. Healing each day mentally. Some days are way better than others but I have the boys to keep my mind from wandering to far. They are truly a blessing. Had my boys not been with me, I would have totally lost it.
Well my friends, thank you for stopping by and we hope you little guys and girls are well and that you are all doing well, we always pray for that.
I will blog more, especially about Ad Mans room!