Thursday, January 29, 2009

Lightrail and the mean old lady

Each weekend K.C., Adam and Big Brother have been riding the light rail all the way into Phoenix. K.C. loves the light rail so much, Adam as well. Big Brother likes it too but just not as much as K.C. and Adam. We take the light rail into Phoenix, then get off and eat at Taco Bell. I have been taking the three boys alone on these trips without help. It's something we want to do as a family. I feel confident that there will be no troubles because they love rididng so much. So far so good. Adam loves putting the money into the ticket machine and getting our passes. I really enjoy going too, Big Brother and I talk alot on these trips. It takes about 1 hr and 20 minutes to get into Phoenix. That is a long trip for the kids, I am so proud of them.

K.C. has been taking a black comb with him everywhere, he's learning to brush his hair. He chews on the comb sometimes and knows he shouldn't so lately he just puts the comb to his lips. I really think he likes that his hair has grown out, I won't be cutting it again unless he starts pulling it out again. Let's pray he doesn't pull it.
Yesterday was not a good day for us. I took K.C. grocery shopping with me, his Dad is in town from San Fran. He took K.C. and I for Dim Sum with some friends of his. We all sat around a very big table and people were talking, laughing, it was noisy but K.C. did really well. The last 15 minutes at the restaurant he had had enough. He was reading to leave and we did.
After we ate, we headed toward the grocery store. As we went into the store K.C. looked very nervous, his little smile looked frantic and I told his Dad that we should do the shopping later because I didn't think K.C. would make it through the whole shopping trip. He agreed so we were going to leave but K.C. wouldn't budge. After he heard that we were going home that was it. He cried and screamed at the top of his lungs, people were staring, I asked his Dad to stop talking to K.C. because he was making it worse. His Dad is hardly ever here, he doesn't know how to handle K.C. When K.C. is angry words make it worse. He doesn't want to hear anything. He finally got up but wouldn't leave the store. He was walking again, but crying, his cry this time was different, he totally knew he was disappointed in himself for not being able to make it through the store. It was a heart wrenching cry. Tears everywhere, I said to K.C. I know he wants to stay and make it through the store, we were going to try. He did cry on and off but through the store I was instructing him to put things into the cart. He knows what food he likes and will pick it up and put it into the cart all by himself! As we turned the corner in the store, K.C. smacked himself in the face hard with both hands, each side of his face. His Dad was shocked. Again his Dad hurried over to him and held his hands, he was even looking around the store to see if we had drawn a crowd! During the whole trip I have to say that hurt me the most, to know his Dad was more concerned about who was watching than K.C. K.C.'s hitting and crying didn't bother me and neither did the people. I knew if we left him alone he would stop. I didn't notice that there was this old lady was staring at us for the longest time. His Dad kept telling me to look at her cause she was staring but I was concentrating on K.C., wondering what had set him off. I didn't look at her until she approached us and said, "I can't believe you are letting him behave that way." That was it. I knew I was telling this woman off. Her voice sounded mean, not caring like my own grandma would sounds. I have always been told to respect elderly people but this lady wasn't giving us any respect so I said to her, "you really need to mind your own business." I thought that would be enough to send her walking but it wasn't. She then said, "it was the most awful parenting she had ever seen." I was pissed. I told her, again, to mind her own business and to leave us alone. K.C.'s Dad looked angry at me! Me of all people! For some reason he felt he owed this lady an explanation, he said to her, "my son is Autistic." That lady walked away muttering under her breath, "excuses, excuses."
We did manage to make it through the trip. K.C. finally calmed down just enough to make it through.
When we loaded the groceries into the van and got K.C. seat belted in (he can do it himself now!) his Dad didn't move. He had his hands on his head and was sweating. He said he was a nervous wreck. We switched seats so that I could drive. I had took and box of banana pop sickles out of the bag before I put them into the van. I handed his Dad the popsickle and asked him to open it for K.C. He stared at me like I was nuts. I said, "well are you going to open it?" Just then we heard a thump noise and looked back, it was K.C. chewing at the interior of the van just near the side of him. There are obvious tear marks in the van from K.C. His Dad said, "oh my God he's destroying the van!" I then said, "NOW ARE YOU GOING TO OPEN THE POPSICLE!" He opened it quickly and K.C. stopped what he was doing. He was happy. Many of you may be thinking, does she always give him Popsicles in the car? The answer is no way. He does chew the side interior but I figure it's not going to hurt him, just the van. He knows the only time he gets Popsicles is on a trip to the store. He doesn't shop with me that much but when he does I always buy him Popsicles. He's not spoiled in my book. I think of it as more of an understanding that K.C. and I have. A silent understanding. It's unbelievable the communication we have without him being able to say a thing. His Dad kind of stared at me on the way home. He kept glancing at K.C. in his mirror. It was quiet. I was at peace and so was K.C. This was just a small incident. The only words that were said was from his Daddy. He kept saying, my son is handicapped, he will always be with us, no college, no job, no marry, no future. He also said he thinks God is punishing him for something he has done. I did speak up and asked him to stop saying negative crap because K.C. could hear every word he was saying. He doesn't understand anything his Dad kept saying. I know he understands and I asked him again to stop and he did. If K.C. wants to go to college he will go with help. If he wants to marry he can. If wants to have a job he will. He has a future. I will admit there was a time I felt the same way his Dad does but have learned that K.C. IS DOING GREAT FOR K.C. Things don't always have to be the same way. He's doing well for K.C. and I love him dearly.
Time for me to go have a popsickle!

Friday, January 16, 2009

Update: Surgery for K.C.

Just a quick update on K.C. and his surgery. I'll make this as short as possible :)
K.C. came out of Anesthesia fighting, crying and pulling his hair out. The nurses called me back to recovery as soon as he woke up because he was so upset. When I walked back to recovery I saw 4 nurses surrounding him. Each nurse had a foot and a arm. K.C. had ripped the i.v. out and they were trying their best to put the i.v. back in his foot this this time. It broke my heart to see him so upset. The nurses decided to move this to a recovery room that had a sliding door to it. We kept the door shut to not disturb the other patients (children) who were in recovery. Everything that we tried to calm K.C. with didn't work. The nurse left saying she was going to call the doctor and when she came back she had a needle with meds in it. I asked her what it was and she said Morphine. She gave him the shot and he fell asleep almost immediately. I could hear the blood in his throat for him screaming so much. His little nose was bloody too. She suctioned both out after she gave the shot. I stayed with him and the nurse took a seat and monitored him. They had this thing on his finger that monitors how much oxygen your body is getting and K.C.'s kept dropping down into the 70's. The Morphine had a bad affect on him. The nurse got an oxygen mask and put it to his nose and turned the oxygen on. He wore it for about an hour and slowly his oxygen levels returned. Thank God, I was so scared I thought I was going to totally lose it.
After recovery the nurses wheeled him down to a room, a private room to rest. I can honestly tell all the Mom's and Dad's out there it is the toughest thing I have ever had to do. Keeping a child, any child for that matter in a hospital room for three days is HARD. Ont he second day he was better but sore. I could tell cause he sounded so raspy and kept trying to stick his fingers down his throat and up his nose. I brought all his movies, markers, pens ETC. I knew we were in for a long 3 days. K.C. refused to wear the hospital gown they gave him and kept taking it off so I put his regular shirt on.
Today he is still sore and last night his breathing was sounding obstructed so I looked up his nose and he had a big blood clot up there. I couldn't get it out because his nose is still sore and he doesn't know how to blow his nose. Today we have an appt. to see if the doctor can get it out. I forgot to mention that in one of K.C.'s ears the doctor said, "there was a foreign body in his right ear." I asked what it was and he said, "skittles." I guess that K.C.'s reinforcer for ABA also went in his ears. We will have to watch more carefully.
The boys stayed with our helper friend and Big Brother called quite a bit saying the house was so quiet without K.C. and wanted him to come home. He really missed him. Ad-Man Adam has started growing hairs on his chin! This is all new for us and I am wondering how to deal with it that's best for Adam. I wish I could ask Adam if he would like to keep the hair growing on his chin or take it off. We are going to make cards of both choices and see if we can get him to tell us that way. I always want to respect whatever he does and I can bet that Adam knows so much in his head and certainly can decide if he wants to shave or not. He just cannot communicate it. Wish us luck!
K.C.'s Autism class sent his a big get well card, each child had their thumb print on and the teacher put each child's name under their thumb print. His OT and Speech teacher signed it too. Yesterday I read it to him and he was very quiet, I read it twice to make sure he heard and understood. Guess what? He didn't tear the card up or scribble on it. He looked at it through out the day, feeling it and just looking at it. He knows. He knows.
P.S. yes that is a baby bottle you see in one of the photos. Yes K.C. still has a bottle when he's upset to calm him. He has only one a day. I know that he shouldn't but I can't see how it hurts anything and the way it calms him benefits him. I hope I don't get bashed too much for saying that.
Thanks for reading and stopping by to check on K.C. and the boys. We love you guys!

Tuesday, January 06, 2009

What's Been Going On.

Hello Friends,

Sorry I haven't posted in so long....It has been so busy here with the boys and I got sick (very scary).
During the holidays that the boys had off for school I got sick. So sick in fact that I had to call 911. I had just finished making dinner for the boys and started to put the dishes into the sink when I felt my heart palpitating very fast. I sat down cause it scared me so much. I called Big Brother downstairs and asked him if he would sit with me cause I was sick and a little scared. He looked kinda shocked but he stayed with me. I kept feeling worse and mentioned to Big Brother in a very happy sort of way that, "gosh, I feel horrible, I wonder what we would do if I fainted or something like that?" Then I said, "Oh I know, you could call 911 and make sure you stay with the boys every second." Meanwhile as I am talking to Big Brother I am getting worse, my heart starts beating faster and then I start to not be able to breath or hear anything, then, I was told, "I passed out."
I woke up to Big Brother leaning over me with the phone in his hand and crying. He was talking to 911. I saw K.C. walk right pass me and walk to the refrigerator and go back to the living room with a big smile on his face. He was scared to death my brave little boy was. God I hated myself for being sick and felt like such a failure for making him go through this. The paramedics came and started an i.v. and put me on a heart monitor, they gave me something called Dopamine and Potassium something something. I felt better but weak, very weak. The whole time I am thinking and freaking out cause my boys had no one to stay with them cause our helper went home (out of state) for the holidays. The officer asked me if he could call anyone (police arrived first) and I mentally went through my list of who was home. My Dad was the only person I could call. He is in a retirement care home but I had no choice. A female officer walked through the door and walked K.C. and Big Brother outside because, "she had something really cool to show them in her patrol car." Adam never came down stairs so I mentioned to the officer that my little brother was upstairs and he might be really scared hearing the commotion. I heard the officer knock on the door that was probably already standing wide open, I heard footsteps, then really fast footsteps, I knew those were Adam's and he was making a run to hide in the closet. I asked another officer who was downstairs to go up stairs and ask the other officer to come back down and leave Adam alone cause he's scared. He did come down thankfully he didn't insist he come out of the closet. I have Autism Stickers, Their ages and Names on the boys bedroom doors just in case.
The female officer came back in with the boys as they loaded me into the ambulance. I asked them to stop so I could talk to the boys. I was so scared leaving them, I tried to hold back crying and it was hard. I told Big Brother to look after Adam and K.C. the very best he could and help the officers til Papa came. I told K.C. I love him and "Mama was going to the hospital cause she wasn't feeling to good and that I would be back." I must tell you, I felt so horrible I really thought I was dying. I wondered if what I just told K.C. was a lie. I always try to be straight forward with him so he knows what to expect and that I mean it. The female officer said she would stay with the boys til their grandpa came. Thank God for this lady.
I went to the hospital praying my Dad would hurry as fast as he possibly could to our house. I knew Adam was so scared. I just wanted to jump off the stretcher and run up the stairs and hold him.
When I got to the hospital I had another EEG that showed my heart was at 145 beats per minute, the lab came and took blood, I went for an MRI, they had to shoot this dye in my veins, they were looking for clots. The dye is kinda scary, it makes your entire body heat up and you can feel it going through every vein in your body. I also had a chest xray. When the labs came back they said I had extremely low amounts of Potassium and then the doctor said I was very dehydrated. She asked me if I was taking care of myself, in my head I though, "not really like I should be." I told her I was taking care of myself. I had to stay overnight to get i.v.s to re hydrate me and then I had to get an i.v. of Potassium which burns so bad it is unbearable. It feels like fire going through your veins. The nurse had warned me before she began the Potassium.
My Dad came up to the hospital the next morning and I freaked out seeing him there thinking the boys were alone. He said that our helper had taken a flight back to AZ. He then went on to say that as soon as I left in the ambulance Big Brother called our helper friend and told her to come back fast. She did, all the way from Chicago. God Bless her. God bless her.
Before I went home the doctor said I have got to eat, drink and take good care of myself. Thinking about things since my Mom passed, Adam coming to stay with us and just everything in general I had weighed, 155 lbs, now I am down to 135lbs. I didn't stop long enough to realize what was happening. I knew I was losing weight but really never stopped to think why. Everything has been such a whirlwind. Things will change. I am very lucky I am still here and will never put the boys through that again.
Adam was the first kiddo I seeked out when I got home. He was happy to see me and I asked him for a big big hug and got it. Gosh I love that Big Boy. I felt like I had been gone for ages. I am just so glad to be home with the boys again. The Boys are my life and the reason I am live. My whole world revolves around them and their happiness. I just have to remember to eat and drink!
Before I got sick we did some Mountain climbing and I took Big Brother and Adam to see the snow, K.C. does not like snow on his hands at all. K.C. stayed with our helper and just the three of us went up north. It was beautiful and cold. Big Brother needed to get away badly. This little boy does so much for me I feel very guilty for making him do so much. Do you guys feel like that too? I asked Big Brother while we were driving in the car how he felt his life was going. We always talk like this and it gives me good insight. He said, "its going pretty good mom, sometimes its hard and K.C. and Adam can be a pain in the butt especially K.C. but my friend at school says his brother is a pain too and he DOES NOT have Autism. When he said those words, word for word I quote him, it made me happy. He understands all brothers no matter Autistic or not Autistic can be a pain in the butt.
The kids are back in school and things will be o.k. til January 12Th. January 12Th is when K.C. is having surgery. We have been visiting an ENT Doctor and he wants K.C. to have, "every benefit he has to offer him to help him." He is having his tonsils and adenoids removed along with a Sinus reduction up his nose. Tubes put in his ears too. He will be having the works. We will see if this helps K.C.. I am praying it will help him out. Please pray for him January 12th. I am so nervous for him. We went to a meeting type thing last night that allows the children who will be having surgery to walk through where they will be at in the hosp and get to try an Anesthesia mask on etc. K.C. was not thrilled but I took pictures to let him know that, "soon he will visit the hospital again." I marked it on the calendar.
Lots happening with the boys.
Thank you all for checking in, we love you guys!