Wednesday, November 25, 2009

Happy Thanksgiving

Happy Thanksgiving friends :)

We are taking each day slowly. We left the country to be with family after my dad passed. My Grandmother flew with us and helped with the boys. The boys had a tough time adjusting but later loved running and playing outside. They played outside alot and to be honest I think the fact that there weren't all the electronic devices that kept them busy at home was good for them. Just good old fashioned playing.

KC is getting taller and is 1/2 shorter than Big Brother. He's catching up to his Big Brother! Adam is STILL getting taller, I am thinking this young man will be 6 feet soon. KC is much more tolerant these days, easy going mostly. He's still non verbal but now knows about 13 signs! Big Brother didn't like the trip as much and wanted to hurry home to see his friends. When we arrived at the airport to go home he was happy. He missed home. I missed it too but I needed to be with family or I would have lost it.

This Thanksgiving we all give thanks to our loved ones. Our families. The most important people in our lives.

We wish all of you a great Turkey Day! We will be blogging more soon :)

Monday, September 21, 2009

Very Sad Week Pray For Us

My Dad has been struggling with the flu (flu like symptoms) over a two month period. Over the two months he got Pneumonia and has had Asthma ever since I can remember. I remember him always carrying an inhaler. He's also been depressed since Mom passed away in April. He passed away last week very quietly in his sleep. The folks at the care home called me at 5 a.m. and asked me to come to the centre. I knew it was going to happen. I had the feeling. I called Rabbi Levy and he did show up an hour later. Called relatives, said they would leave as soon as possible. My Dad's brother lives in Israel along with his wife and children. If it wasn't for Rabbi Levy and his kindness I couldn't have planned alone. I have been so scatterbrained not to mention this week Rosh Hashanah. It's given me strength that I need and my children need. The Shiva was so hard. I didn't think I could do it. I just kept thinking of Mom and now Dad and how lonely he's been without her. They did everything together. I have watched his health go down the tubes since Mom passed away. He just lost any love for life. It weakened him. Broke my heart. Still breaking. We feel very alone now. I only have my grandma who is very old. Now I keep thinking she will be leaving us soon.

Dad's brother asked that the boys and I come to stay with his family in Israel for a couple weeks. I'm not sure. Scatterbrained I am. Sorry this post is so scattered. Maybe getting away would be good for me but the boys routines would be so interrupted I think it would be extremely tough. Our helper who is also Jewish says she would come along to help with Adam and KC. I'm thinking yes we should try...still don't know. For sure nothing is certain.

Monday, August 31, 2009

The Hand Watcher

This is what Big Brother has been calling me lately. Let me explain.

KC will not keep his hands out of his pants period. From front to back, me catching him, washing his hands, stopping him (trying to not make a big deal out of it or he'll do it more) even does it in the store or wherever he wants. Then I have AdMan Adam, "my pincher." Watching both boys hands has become quite tough. Adam is easier to stop but KC is alot harder and more obvious. Anybody have any ideas? Clothing etc? It seems ever since we have been trying to get him out of his diapers so he's totally using the toilet and Big Boy underwear he won't stop with the hands.

On an awesome note, his teacher reports that on Friday he used the toilet 4 times, no diapers! We are so close to being out of the diapers during the day, I mean totally not using them during the day! I'm so proud of him!

Wednesday, August 19, 2009

KC and The Boys - PEZ Candy

Hi Bloggers,

It's been awhile since I've blogged, been so darn busy with back to school stuff and I had surgery. My Gallbladder was removed, I had a stone in my bile duct and it nearly killed me (pain wise anyway.) I am still recovering and had my staples removed last week. It was two surgeries, one was down my throat to remove the stone in the duct and the other was abdominal. I have been one slow moving Mama and thank God that I had Big Brother as my HUGE helper. While I was recovering I really thought the change would upset Adam and KC tremendously. Guess what? Somehow they sensed I wasn't feeling well and never had a melt down or pinching from Adam. I had only one day to prepare for the surgery so Tacey our helper and I prepped the boys with PECS. It worked wonders! When I got home I let the boys see my staples and all of them did look. I think that also made a difference. Big Brother was disappointed that I couldn't bring the stones home. They were sent to the lab :( Yuck!

All my boys are back in school and doing well. KC had one hair pulling incident at therapy and ripped a total bald spot at the top of his head so we had to shave it yet again. Just when we thought we had the hair pulling beat :(

Ad Man Adam is now shaving with help. I can't believe it. I mean gosh he's not my little brother no more, he's my more grown up little brother. My Mom would be so proud at that strides he is making. (Forgot to mention) after surgery I couldn't get up from a sitting position without help. Adam was in the living room and I extended my hand to him and said, "help me Adam, I can't get up I'm hurt." I swear to you I could not believe what happened next. He stood their looking off as if not to hear me, I started to put my hand down when he held his hand out for me to grab! People can you believe it? He not only extended his hand he pulled as I pulled his arm he pulled back! Yes I cried like a baby. Gosh I love that kiddo!

I used to collect PEZ dispensers as a kid and loved the candy that came with the dispenser as well :)

On a recent visit to KC's Developmental Ped. the nurse working their suggested PEZ candy as a treat (for an ABA incentive).

What's even better they are Gluten and Allergen Free hooray!

The only not so good thing about the dispensers he isn't coordinated enough to load it. Still he loves them even though Mom has to help.

We have been using the candies in his ABA program and he's doing great, (to him they are heaven and worth working for!)

So far he's collected 6 dispensers.

The part I love best is that it's something I loved collecting as a kid and to see my son 'collecting' them too is cool. Maybe I'm not so old school after all?

Big Brother has been playing football and loves it! He's changing so much. He used to be very serious and into Science stuff, but now he's into football. I have also noticed a huge change in how he wants his peers to see him. I am used to holding Adam and KC's hand wherever we go. Me being in the middle in case Adam has a pinching fit. On an outing I had just K.C. and Big Brother as Adam was in his after school Habilitation program. I tried holding Big Brother's hand and he pulled away. I asked him, "what's wrong?" He said, "Mom I'm not a baby anymore and not Autistic." I let him know straight away that I hold his hand cause I love him. Still I see him pulling away especially in front of his football buds. Makes me cry. I am glad that K.C. and Adam will let me hug them, hold their hands and never pull away. Who says Autistic kids can't show affection? I would say they are more affectionate than Big Brother right now! Both boys are non verbal but their body language says it all. My husband doesn't like that I treat K.C. and Adam "like Toddlers." I tell him, "there's nothing wrong with loving your kids at any age and any time."
That includes hugs and kisses from me. Adam went through a very hard transition when Mom died. He needed the extra attention and it hasn't been that long. Adam remembers. He has his favorite photo of Mom in his backpack and he never takes it out or tears it up. I'm very blessed to have two Autistic boys and one non Autistic kiddo.

Hope you are all well and your kiddos are doing super!

Monday, June 08, 2009

Happy Birthday To KC

Happy Birthday to my KC. He is 8 years old.( For Safety Concerns I never post the exact birth date) We had his birthday over the weekend and a beautiful Disney Cars cake. KC has never ate cake and even though we tried to get him to have at least one piece of his birthday cake he would not try. We sang happy birthday to him and things got a little noisy and I could see that he was tuning us out so we kept the party short.
We got alot of good eye contact and smiles at the party. He got a huge box of wooden blocks, books, play dough and Big Brother bought him a mood ring. I asked him, "why do you want him to wear the ring?" And he said, "gosh Mom it's simple, when he wears the ring we will know what kind of mood he's in and we won't have to guess." I thought it was cute. Strangely enough when we put the ring on his finger it showed mixed emotions. Don't know if they really work but it was interesting.
KC has been doing very well. We haven't had a hair pulling or head banging incident in so long! I am keeping my fingers crossed. He has been seizure free and we are so thankful to God for this. KC is signing more, to this day he can sign, thank you, more, finished, yellow, blue, please and dog. I am working very hard to get him to sin, "Mama." I know he will learn it and when he does sign "Mama" you will hear me crying like a baby. Just typing it and imagining it makes me tear up.
Lately KC has been walking straight up to me, looking at me and opening his mouth real wide. I know he's trying to tell me something but don't know what it is. His teeth look okay and I haven't seen any sores in his mouth. It has been a daily thing and when I can't figure out what he wants he gets really frustrated. Maybe I will figure it out soon.
Big Brother is swimming alot and still riding the darn skateboard. It scares me when he rides it but he loves it. Adam got a new bike! We got a three wheeler adult Trike from Trikezilla and it's wonderful! Adam has never been able to ride a bike and I thought maybe he could learn to ride an adult trike. Well he's learning! He is getting there. He's having some trouble pushing and alternating feet. One always slides off and hits the ground. I am going to try to find something to tie around his shoe so that it will stay on the pedal. I don't know if there is such a thing and if there isn't I'll try to come up with something.
We hope you and your families are well and happy. Thank you for stopping by!
Tina and Boys

Friday, June 05, 2009

KC at 2 years old

I found some video of K.C. and Big Brother when they were two and three years old. The video is quite old and grainy but thought I would post it anyways. Looking back (please watch entire video) I can see how I was in denial about K.C. having Autism. It was very clear then that he had no eye contact and loved flapping and spinning himself in circles. Still I looked the other way knowing that my brother has Autism and it was possible for my own child to have it as well. Those were tough days. Getting help and early intervention made a huge difference, had I kept looking the other way who knows what K.C. would have been like today.
Today K.C. is a very happy Big Boy who is nearly 8 years old. We love him dearly and he puts a smile on our faces everyday. Did I mention he knows how to give kisses now? You can imagine I am in heaven and request at least 20 kisses a day! He is amazing.

Sunday, May 10, 2009

Summertime is here

It's summertime! We have been swimming just about everyday, it's been very warm here, 104 degrees and will be climbing. Big Brothers cast is off and things are easier now. He can get in and out of the van without dragging the crutches with him.
K.C. likes staying indoors. I literally have to pry his little butt out of the seat to get him to go outside for some sunlight. He loves staying indoors and Adam does too.
We went to a horse ranch yesterday with the boys, they got to brush and feed and ride the horses. K.C. wouldn't ride but tried to brush the horse. Ad Man Adam did ride! He was so tense when he got up on the horse, his shoulders were so stiff. A young guy lead the horse around slowly and eventually I could see Adam's shoulders begin to drop. He looked so relaxed compared to how he usually walks and stands, looks like he's always about to explode or fall forward. The rest of the day for Adam was really good. We are taking the boys back on Sat. If I could get K.C. up on the horse it would be awesome. It helps Adam so much I know I will be taking him as much as I can. I did forget my camera, it sat on the kitchen table :(
School is out next week for the boys! That means I am going to be one busy Mama. Adam will be going to Summer camp for a week and Big Brother will be going to San Fran to stay 2 weeks with his Daddy. It's just going to be K.C. and I. I am planning activities for us to do while the boys are away. I can't wait to spend the extra time with K.C. but will miss Adam and Big Brother very much. Adam has went to camp every year and I remember my Mom being so excited for Adam and planning his camp trip. We wouldn't miss it for the world.
I am doing o.k. feeling better now that things are adjusting a bit more. We have a routine we follow religiously and as long as there are no big changes things have been going smoothly. K.C. is tolerating change better. Maybe it's his age? I remember the developmental Pediatrician saying, "it gets easier with age." I guess he was right.
Bought the movie Twilight, hope it's good. I am going to watch it tonight. We hope you are all well and thank you for stopping by.

K.C. is wearing C.B.'s Tshirt.

Monday, March 30, 2009

Big Brother broke his leg

(Yes, that is a frozen food dinner he's eating, thank God for frozen food every now and then, especially on hectic days.)

Yep, I knew all those trips to the skate park would come back and bite us one day...three days ago to be exact. I take Big Brother to the skate park once a week, sometimes twice for his, "fun day." He's a skateboard junkie.

Things didn't go too well for him that day at the park. Somehow as he was going up a very high ramp, he didn't gain enough momentum to make it up and I watched in horror yes horror and thought to myself, "oh God this is going to hurt." As he tried to reach the top he knew he wasn't going to make a quickly turned the skateboard to head back down but turned to quickly and fell all the way down onto his head with his leg slamming down behind him. I was already down into the skate area running to him as kids started gathering asking him if he was o.k. He wasn't getting up so I knew it was bad. We tried to pull him to a standing position but he couldn't put any weight on it. I piggy backed him to the van, went home, picked up his insurance card and money for the co pay (gosh co pays suck) noticed K.C. and AdMan were doing fine with our helper friend and we left.

To make a long story a bit shorter, he broke one bone in his foot. We went to the Ortho doctor this morning and got a permanent cast. Why the ER gave us a weird cast I have no idea. I am lad that we went to the Ortho cause he knew what he was doing. So Big Brother will not be skating for a month.

At home life has been very difficult and busy. Our helper friend is staying full time to help me with all the boys. It's weird saying that cause poor Big Brother hardly ever needs help bless his heart. I feel so bad for him. He loves playing outside so much. K.C. and I did pull him around in the wagon yesterday. He did get some fresh air. K.C. and Adam have been in a sort of cranky moods cause of the change. K.C. spent nearly half the day trying to tear his cast off and I spent most of that day trying to stop him and distract him. He got so mad his nose was running his hair was full of sweat and he was so confused and seemed terrified. He did finally give up. Big Brother gives his cruthces to K.C. when K.C. approaches him. K.C. likes the crutches thank goodness.

Well I am off to bed, it's midnight here. Long day, need rest. Nighty.

Thursday, March 19, 2009

Please and Time To Swim!

I can't believe it's 90 degrees here. Too soon for me. Big Brother asked if we could go swimming yesterday and I agreed. He really didn't swim all that much but he did lay in the sun alot. K.C. sat at a table eating his snack he brought with him. He was such a good boy at the pool.

Last night as I was up with K.C. watching him play because he refused to lay down, I heard something I couldn't believe. K.C. got tired eventually and headed for the couch. When he's falling asleep he's always chattering and making noises. He was doing the same last night and I was smiling through the whole thing cause his little noises can be funny. Then after a few more noises I heard a "pwease." Yes, I really heard it I DID! I wasn't asleep or falling asleep. He said, "pwease" with a w sound. His eyes were shut and he was half asleep. My jaw dropped opened. I clapped quietly by myself and sat down to listen some more. The rest of his noises were just noises, but I heard him say, "pwease." I wish my Mom were here for me to call and tell her. As I drove the boys to school Adam rode in the front seat with me. Big Brother rode with K.C. I let them all know what I heard cause I had to share it with someone! I told K.C. he said it when he was half awake and half asleep. I bet he was having a dream about home or school and was needing something and said "pwease" in his head but it actually came out in his half awake half asleep state. I will be listening more every night. Wow is all I can say!
There is a little typical boy inside there. He thinks just like we do but can't get it out. I totally feel it.
I had to share this and document it in his baby book. Well it's turned into a journal after the baby book stopped at 5 years old. I once thought I would never be able to wrote down his first word ever. Now so far we have heard, "mama, up and pwease." The weird thing is we have only heard the 1 time and never again. Hopefully we will hear them more!

Thursday, March 12, 2009

Mr. Sleepy Head. His life has been very busy these days, it's no wonder he conks out so quickly.

K.C. has to have everything perfect. When we go somewhere he has to bring 3 or 4 favorite objects from home with him. When we are in the car he puts his things down just right and God forbid they get touched or moved, he will lose it. I just wonder why he insists on taking these things with him if they are a great source of frustration. He won't leave the house without his, car, toy cell phone, food item and drink with a straw. I guess it's o.k?

Yesterday Big Brother was outside riding his bike with the neighborhood kids. I can see them from the window trying to jump a mini ramp a kid brought. There were roughly 16 kids out there. The youngest looked 4 and the oldest 14 or 13. I went out to check on Big Brother (also to let the other kids know I'm watching and they had better not be mean to B.B.) K.C. walked with me. Some of the kids asked B.B., "who's that boy with your mom?" "Can he play?" B.B didn't even answer, he just rode off. He gave me a quick look and left. This is the very first time I could see in Big Brother's face that he was ashamed. I knew it right away. I took K.C. inside quickly. I don't know why but I was angry and hurt at B.B. I let him play a little longer and then called him inside. He was quiet, he knew I was disappointed. At dinnertime I figured we'd make tacos so that he could help. He always grates the cheese and washes the vegetables. We started talking. I asked him if he felt embarrassed by K.C. He said, "yes." Then said, "only because if K.C. makes a weird noise and they know he's Autistic they will make fun of me every chance they get." These are the only children in the neighborhood for him to socialize with. He likes these kids so I am kinda at a, "not sure what to do moment." I have noticed that Big Brother is changing a lot. He wants to be even more independent and gets embarrassed when I hold his hand or hug him in public. I guess he's getting older. I can say that I am surely thankful K.C. lets me hug and love on him all I want. He doesn't worry about being embarrassed. Two boys, completely different. I am starting to wonder if I should make friends with Autism families and find an NT sibling of an Autistic child that Big Brother can connect with. I just don't want it to be about K.C. and Autism all the time. It's not fair to B.B. I guess I have alot of thinking to do. One thing is certain. I am not going to keep K.C. inside just because of some kids who are jerks. He has a right to play just as they do. If I hear them make fun of K.C. I will come unglued. I know in my heart that K.C. understands everything that is being said around him. He just can't show it.

K.C. has been going to habilitation everyday. He's doing well. He likes the art center the most and I swear he almost drew eyes and a smile! I could see it! There are also group activities, he hates group time but has his hab person sit through it with him. Hopefully he will learn to like it.

Ad man Adam is great. I bought him an IPOD and he loves it! He's always wearing it and if you were to glance at him he just looks like a teen guy with an IPOD. You know, just one of the guys. I'm really happy that he likes it. He picked pink. What is with the color pink? I took K.C. to get new shoes and put three pairs in front of him and he picked DC soes that were pink. I tried to take the pink ones away and he had a fit. We got the pink ones because he likes them. Pink can be for guys too can't it?

I am doing better. Not as tired anymore now that the boys are going to Habilitation. I can get tons of things done while they are away and can even sleep! I was scared at first to leave them, the trust factor is huge with me. Everyone around me kept telling me to try. I finally did and I have a good feeling when I do drop them off and pick them up. They are happy there and have had better coping skills that I can notice already. I should have done this along time ago.

We hope you all are o.k. and we are sending a very big hug to Nik and his Mama. Feel better soon Nik!

Saturday, February 21, 2009

Thank God for Habilitation and Respite

K.C.'s Support coordinator and Adam my little brothers Support Coordinator came by for their 2 month visit. They come every two months to check up on the boys. K.C.'s Support Coordinator said that I looked, "very tired" and encouraged me to use my Habilitation and Respite hours for the boys. I promised her I would. I have had these hours all along and really haven't utilized them as much as I should have.

So yesterday and today the boys Daddy and I made our list of questions to bring along as we checked places out. I would be asking most of the questions (their Dad feels better if I do the talking cause his English is broken badly) and their Dad would be checking to see if the place looked escape proof and to see if there was anything out in the open that shouldn't be, like chemicals cleaners etc.

We visited 4 centers in all. We both agreed that the last place we checked which was this morning was best for Adam and K.C. It had many educational centers going on, sensory room and best of all both boys would be within arms reach of their habilitator at all times. There was an area for bigger kids, in fact there was even a program for adults. The adults come in the morning and leave before 2 p.m. At that point there is a huge sign that says, "No Adults Beyond This Point After 2 p.m." So K.C. and Adam will be going straight to the center after school and I will be picking them up at 6 p.m. The center wants them to come everyday but I think it's too much, after all I have to see my boys still! So 3 days a week they will go and on Saturday from 10am to 3p.m. K.C.'s Dad was convinced the place was escape proof for the boys because we couldn't even get out the door to leave, those child locks are tricky. I still worry though, most of you remember what had happened not that long ago that K.C. did escape from home. It was horrible and I have become extremely careful each day.

Big Brother and I are going to be spending time at some of the places he wants to go but can't go when K.C. and Adam are home because it's too noisy for them. Even when I do go somewhere with Big Brother alone, he kinda shuffles around and looks sad like he's missing something. I have to try to let him know it's o.k. if we go sometimes without the boys. I have told him that even if we did take them they wouldn't have a good time because of the noise (we have tried several times)and the boys would appreciate it we didn't bring them to such noisy places. Big Brother is not so convinced.

UPDATE: I started this post on Saturday and it's now Sunday afternoon. We have just came back from the skateboard park with Big Brother ( it's an older video but you get the idea. while we were there I noticed I was the ONLY parent supervising my child. I watched Big Brother skateboard and noticed an older guy probably about 20 to 25 years old walked in to the skate area. He had no skateboard or bike. Then I noticed a bunch of little kids and 1 teenager go to the guy. I was sitting across from them. Me being the nosy Mom like I am listened to what they were saying. Most of it was in Spanish as they were all Hispanic. (I took 3 years of Spanish I high school.) This guy was saying, "I have some candy that will make you feel like your in heaven." Then I watched him pull this bag of drugs right out of his duffel bag in front of EVERYONE. He then asked a kid about 11 years old, "wanna roll a joint." The kid said, "yeah." They were smoking POT! I could not believe this was happening. Big Brother rode over to me and said, "Mom that cigarette smells funny, is it a different kind?" I picked up my cell phone and dialed 911 and spoke to the operator very quietly. I explained what was going on and she sent an officer our way. I stayed on the phone with her keeping an eye on the children and the guy. When the guy saw the cops come, he reached into his pants and threw the bag of drugs into the duffel bag and walked away. The officer approached him and asked him straight away where the bags were. The guy looking like he's all innocent says, "you can even search me." Another cop came and walked toward us. I then told him his bag was at the foot of the stairs. They retrieved the bag and put the cuffs on the guy (*who was wanted) and took the kids to their parents house.

We will not be going back there ever again. We will drive a little further to a different skate park that is in a better safer area. The world is so dangerous, kids have to be supervised nearly every second.

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!