Monday, November 24, 2008

Peter Piper Pizza and one awful day.






Hello! I am happy to report that Adam has been taking art classes with an instructor! (work is displayed on the sidebar) The instructor works with special needs kids and he says Adam has real talent! His memory for detail is unbelievable when it comes to painting, the painting above he worked on for a week! After he had finished it, the instructor set his work area up, paints etc. the second painting was an exact replica of his first! I mean down to the last detail! We don't know if he seen this himself somewhere or if it's his own thoughts and feelings. Either way, we love it cause it's from Adam's very own hand. I could never do this. The only thing is that Adam wants to paint the same thing over and over and over again. Maybe he's trying to tell us something? Big Brother calls his painting,"Chaos." He really likes it. Adam has found a new love in painting and I am thrilled! If my Mom could see this she would be crying, surprised and then she would cry some more. I am so proud of him and most of all we are all happy that HE loves what he's doing. God forbid anyone touch his artwork until he's completely finished! K.C. got into one of Adam's paintings and Adam screamed and cried for nearly 2 hours. I did tell K.C. very sternly not to touch Adam's artwork. We got K.C. his own set over the weekend so that he'd hopefully stay away from Adam's. Adam let's Big Brother into his room when he's doing artwork but nobody else! I asked Big Brother why Adam only lets him into his room and he says, "because you make him nervous and he's afraid K.C. will touch his paints, I just sit and read while he paints or turn his t.v. on." Makes sense to me now that I think about it. Let me know what you guys think of Ad Man's painting and I will read them to him. I always read to him and I know he LOVES it. If he knows what others think of his paintings (don't worry, it's o.k. cause it's finished) I know he'll be encouraged.

I took the boys to Peter Piper Pizza yesterday. It started out as a good time and really it was a good time all the way through until it happened. I had been thinking about this happening over the years and thought that I would be ahead of the game and maybe it would happen but it did. Adam was sitting with me in the booth eating bread stick. K.C. was too and Big Brother as well. Adam stayed with me the whole time. I started to chat with a really nice old lady who was there with her great grandchildren. This lady was still driving! Anyhow, Big Brother says, "can K.C. and I go climb the pay structure?" I thought to myself, "should I let him go?" Then thought, "dam nit, he can play too, everyone Else's kids are playing and so is he!" So off they went. I watched K.C. climb up high with his soda in his hand. An employee saw K.C. with his soda and kept saying, "hey little boy, you can't have that up there, you'll spill it." Anyhow, K.C. ignored him and the worked walked off shaking his head. I then see Big Brother waving and waved back and pointed for him to follow K.C. He knows he has to stick with him always. Just for a few seconds K.C. was out of sight. O.K., maybe a few minutes. When he did appear again, he was naked. He was naked climbing down from way up high. Oh God, as I type this I get that horrible feeling again. My heart sank and Big Brother was screaming at K.C. The old lady I was sitting near looked horrified and I asked her to please sit with Adam til I get K.C. taken care of. She motioned for me to hurry and I ran over to K.C. and tried to hide him in a tunnel til Big Brother could retrieve his pants. I dressed him super quickly and as we came out people were pointing, laughing and Big Brother was pissed. A little girl about 11 years old kept pointing at us as we took our seats next to Adam. I expected her Mama to tell her to mind her business and stop pointing but SHE DIDN'T! Big Brother by this time was crying and pissed beyond all belief. He said, "can I go to the bathroom?" I believed him and scooted out to let him through. He grabbed his soda and he went and I noticed he wasn't heading to the bathroom but straight over to that pointing little girl. He walked straight up to her took the lid off his soda and threw it in her face. Then he started to point and laugh at her (called her "ugly"). The Mom came over to us and screamed at me. Adam was getting very agitated and then a worker came and asked US to leave. I said, "what the hell for?" He said, "because customers are afraid for their children and your son won't keep his clothes on, it's a health risk." So I told him off and let him know the only risk will be when my lawyer contacts them for discrimination. He said nothing. We left with the boys. K.C. was still smiling, Adam looked agitated, Big Brother looking very satisfied with his soda throwing episode. In the car Adam sat with Big Brother, I heard him whispering to Adam, "we showed them, how does she like it, then he says, give me five Adam!" That didn't go well with me. When we have a bad incident in a supermarket or wherever, Big Brother knows we get into the van and no words are allowed til we get home. No words at all. It helps a great deal and it calms everyone down faster. We talk about it later. Big Brother has extra chores to do this week because of his soda throwing and I had a long talk about what would have been a better choice in the situation. He named a few better choices, he clearly understands. He's 8 years old, he's going to encounter alot of people like that as the boys grow up and he's with them. We have to handle it as best we can. We can't help that people are ignorant. I am so thankful for people in the Autism community, you guys are people who live our lives everyday, you understand. Very thankful.
More news... we are going to (hopefully) sell this house and move to a single story home with 5 bedrooms. It will be less crowded and the boys will feel better. The xtra bedroom we want to turn into the boys ABA room. Both boys have their ABA instructors come in the evening and it would be really nice to have one big therapy room. It will be a big step but we are ready for it!

P.S. that is our doggy in one of the photos, I couldnt get her to turn around.

Tuesday, October 28, 2008

Updates (UP!) Bragging..




Hello Friends,

It's been awhile since I last wrote and finally have time to sit down and write a little bit about the boys. K.C., my youngest little boy who has Autism (for any new readers who may not know) is doing very well. He is in a very good program at school and comes home happy almost everyday. He had been sick with Asthma and the school nurse called saying she needed his tubing so she could give him a treatment. I left his tubes at school and kept some at home. He's doing much better now. Sometimes the air quality is just so icky out there.

His teacher says he's doing quite well at school and he is going to be working on tracing horizontal and vertical lines in hopes that he will soon be tracing his own name soon. At K.C.'s school during lunch time, 6 students, this includes K.C. sit down and eat together. We have been working very hard on daily living skills and it is so paying off. He now sits at the table WITH people and eats! Can you believe it? Not too many months ago this little boy couldn't even sit at the table with his Big Brother. He would grab at Big Brothers plate and throw it, scream and was just not a happy little boy. He also will take his plate or bowl to the SINK and put it in when he's finished without being asked too. This didn't happen overnight though, I really believe that the school he is now is a major factor. He's learning when he's happy.

His teacher reported that K.C.'s class has been going to music class with the
regular ed students! Each child has an aide with him the whole time, always within reach. So far K.C. is doing great! My little boy is participating with a regular class! On the way back from music class his teacher says K.C. wants to touch each classroom door or open it, the classes have students in them and his teacher has to tell him, "no." He gets angry so his teacher called me yesterday and said that from now on when K.C. walks back from music class she will give him something to carry that requires both hands so he can't touch or open doors. I thought it was a very good idea. Knowing K.C, he won't put whatever it is that he is holding down and he might keep walking. Headbanging has been rare (I hope I didn't jinx myself) and I pray that they stop altogether but realize that they also might not stop and appreciate the good times even more. His Adaptive P.E. coach said she has been working with K.C. on the word, "freeze!" If K.C. can learn this word each time someone places their hands on his shoulders when he hears the word "freeze" it would be so helpful to me! I can think of alot of situations that word would come in handy! She also is working on running with K.C. K.C. doesn't run and I am not sure he even knows how too but we are working on it. Eating has been an issue. He eats alot of the same food and I mean alot. I am going to try to cut back on how much he is eating because it's all carbs and it's like a food addiction to him. He is now 92 pounds at 7 years old. I have to do something about it now or he'll just continue to gain. If anyone has any ideas on how to get K.C. away from carbs that he is so addicted too please pass on the info. Seriously he is addicted to carbs and eats so much that he throws up. I try to stop him from eating so often and boy does he get mad. I usually give in to him because I don't want to see him head bang and hurt himself. The teacher says he still eats mostly with his hands and uses a spoon or fork only sometimes. He can use a spoon and a fork but he's not very good at it and prefers to use his hands. He's trying very hard and I am so proud of him.

I have some very exciting news. Last night Big Brother and I was going through some videos of the kids playing at the park. I noticed that in one video as K.C. was climbing to go up to go down a slide I swear I heard him say, "up!" Now I have proof cause I caught it on tape. I keep asking myself, did her really say, "up?" I'd like to know what you all think, please listen to the video as he goes up the slide and see if you can tell if he is saying a word or just babbling. K.C. has said "Mama" one time in the past and that was the only time I ever heard him speak. He hasn't spoke since. I used to question myself if I really did hear him say "Mama" or not and know in my heart that he did.

Big Brother has been into football so much this month, he's really interested! I was very surprised because he has almost always disliked sports and would rather do "a science experiment." He changing big time. In the afternoons and on weekends I take Big Brother to practice with a group of children who is his age and about the same size. His coach has been great. He's patient, encouraging and "awesome" as Big Brother says. This pop warner group is a group of boys from our neighborhood. It's a rough sport and Big Brother loves it! I really believe he releases alot of his frustrations through football. All the children wear protective gear always. Big Brothers coach says that football is safer than soccer, I was so surprised. Big Brother is loving football and is doing well in school.

"Ad-Man" Adam is also doing well. He has really taken an interest in painting with a paint brush. He gets totally lost in painting and is mesmerized by the colors. He mostly paints lines and swirls and they are beautiful in my book. We have been rewarding Adam with "paint time" when he is being such a good guy. He flaps and squeals when he knows its "paint time." He has been getting along with the boys very well. Big Brother and Adam barely notice each other and keep their distances. Big Brother loves being with Adam cause he's older but I kinda think Big Brother likes the idea of being able to help Adam. This morning as we were heading out the door Big Brother stopped and tied Adam's shoes for him. I really touched my heart because Big Brother did it without being asked too. Those are the best moments. I know some folks may feel that when their child has a disability it makes it miserable for the children who are Neurotypical. In our case, in our family I have seen Big Brother grow into a caring, loving and compassionate young man. He has learned so much from having two disabled brothers. (Adam is just like a brother to the boys even though he's actually my little brother.) I love how all the boys are learning so much from each other and I wouldn't want it any other way. How could I?

We hope all of you and your beautiful kiddos are well. We will be stopping by and catching up soon!

Monday, September 29, 2008

L'shanah Tovah



Family and Friends,

We wish you all a wonderful, happy, healthy and peaceful year. This has been our 'year of learning', also momentous, in that we celebrated so many things: Birthdays, having Adam in our lives, my boys and all of the wonderful people who help us with the boys. This has been a year of learning for us.

May you all see such happiness,
Tina, Adam, Jayce and Chance

The attached video is of K.C.(Chance) at the park doing what he now loves to do best at the park. He loves laying in the sand. He looks very peaceful and his body looks so relaxed when he's in the "icky sand" as I say to him. It was straight to the bathtub for him when he got home :)

Sunday, September 28, 2008

Leo (Language and ECU in one)


Hello Everyone,

How is everyone? We hope that you and your families are doing well. We are doing great these days. We have our tough days but mostly we have been having good days.
K.C. Is doing so well in his new program at school. Each morning he looks forward to going to school. He even smiles while I help him get dressed. He has a "job" at school. He helps cleaning up the classroom by putting things in their proper place. He understands this well, he loves for things to be the same so putting things away as they were before is something he loves to do. His teacher has been great. She stays in contact with me each day either by phone calls or in his communication notebook. About 2 weeks ago I asked the teacher if we could work on potty training K.C. because I believe he is ready. I told her I would still send his pull ups and that I would also be sending kids boxer shorts. The staff at his school have been taking him to the bathroom several times a day and waits in the bathroom with him until he goes. Sometimes he does go and sometimes he doesn't. We have been working on it very hard and I can now officially say that he is nearly day time potty trained. We only put a pull up on him when he rides home on the bus and in the morning on the ride to school. At home he is also doing great potty training. When he gets antsy and walks around looking panicky we hurry him to the bathroom. Yesterday Big Brother was in the bathroom ad K.C. had to go, I hurried Big Brother out just before he almost had an accident. He can't hold it for long so at school and at home we hurry him to the bathroom. He had at least 4 successes a day at the toilet! I am so proud of him, he is such a trooper.

K.C. has been using an augmentative communication device called "LEO." His teacher thinks this device will be best for K.C. so we are having a guy come in with alot of different devices to see which one would work best for K.C. He is using LEO in the classroom but just to be sure before we get one, to let K.C. try different ones. I too think LEO is best for him. This is what LEO is, http://www.assistivetech.com/p-leo.htm

We have been going on early evening walks with the boys. We have to walk in the evening because during the day, it is still around 104 degrees! Our buddy helper walks with Adam and I pull K.C. along in his yellow wagon. He loves this wagon so much in fact, when the sun starts to go down in the evening he pulls the wagon into the kitchen or wherever I am and just stands there! That my friends is communication! I always finish up whatever I am doing and we head out the door! He loves the wagon so much in fact, the above picture is of K.C. and Jayce, K.C. is actually sleeping in this wagon and Big Brother has fell asleep on the couch while watching SpiderMan part 1. K.C. kept trying to pull his wagon through the couch so I moved the couch and pulled the wagon near Big Brother and he fell asleep fast. K.C. never plays with Big Brother or Adam, BUT if they are sleeping he will hang around. He knows! We haven't had the wagon for very long, we ordered it from Lakeshore and it can hold four small kids or one big boy K.C.! We got it here, I also found alot of interesting things here teaching.
http://www.lakeshorelearning.com/seo/ca%7CsearchResults~~p%7CLA979~~.jsp

Big Brother is doing great. We have installed a Tetherball and Tetherball Pole in the backyard. Adam doesn't understand the game but he loves hitting the ball. Big Brother loves having Adam in the backyard because he has no one to play with. He told me yesterday that even though Adam and K.C. can not speak having someone there just to watch is good enough for him! I do watch Big Brother play and play with him sometimes too. He loves having kids to play with and I love seeing him smile.

Adam (we have been calling him "Add Man" these days and sometimes I think I see him grinning when I say it.) He too is doing well in school and his ABA program at home. K.C. Adam and K.C. both have ABA instructors come to our house in the early evening to work with them separately. It's never too late for ABA, Adam is a teenager and has really just began his ABA program since living with us. Before ABA he could not dress himself properly, he now dresses himself. He is still working on brushing his hair, teeth etc but one step at a time. He is getting there and I am very proud of him and I believe he is happy that he has learned so much and can do it all by himself.

I have been having some lower back problems but have an appointment to see a doctor soon. During the day I have time to myself and some days I am so tired that I set the alarm clock for 2:00 p.m. and after the boys leave I had for the bed! One day last week I slept from about 8 til 2 p.m.! Having three boys is a very tiring job and it catches up to you and when it does you have to sleep to keep from getting worn out.

Thank you all for checking in on us, we love having visitors to the blog.

I have added a very important link to my blog. It is at the top right hand corner of my blog. It says, "Please show your support to Lora and Griffin, to learn more please visit, (there is a clickable link on my page.) Please visit her and her Autistic son Griffin, she has something very important to say and I believe we all can learn something from her experience.

Friday, August 22, 2008

The Butcher


I have learned/figured out something about K.C. today that I couldn't figure out before. K.C. has been going to the supermarket with me more and more these days. He does a great job of waiting and seems at ease when we are in the front of the store. When we head toward the back of the store he always, ALWAYS gets anxious and walks with his fingers stuck in his ears. I could never figure it out before, I thought that maybe he was tired of shopping and wanted to go home. Today I am so happy to say that the butcher and I have solved why K.C. gets so uncomfortable at the back of the store.

As we were approaching the whole frozen chickens it started. As we walked closer to the meat he cried, covered his ears and tried to walk the other way. The butcher who was putting meat out watched K.C. as I tried to get him to stay with me as I looked at the chicken/meat. The butcher walked over to us and said, "hi mam, hi young man, are your ears hurting today?"

It hit me like a bolt of lightening, something in the meat/chicken section was killing his ears even standing 10 feet from the meat section. I walked K.C. away from the meat section and slowly his hands came off his ears. I listened as we got closer. I heard nothing but K.C. heard something. The butcher was watching us out of the corner of his eye. I walked over to the butcher and said, "yep, you are right, his ears hurt today especially when we walk toward this section. The butcher then said, "it buzzes." I said nothing because I didn't know what the heck he was talking about and he said, "the freezers make a very low buzzing." That was it. I looked down at K.C. and said, "that noise coming from the meat freezer is hurting your ears, I understand now, lets get away from the noise."

He was fine, he listened to me talk and I could see his eyes darting around so I know he was listening.

To all the Mom's and Dad's out there who have Autistic children. Sometimes what seems to be the smallest noise to us is the biggest explosion to an Autistic child's ears. I have learned that I need to be constantly alert to my environment so that I can pinpoint what is causing K.C.'s ears to hurt. It's sometimes tough to figure out but we try and do the best we can so that our children aren't hurting.

Saturday, August 16, 2008

Under Control, Somewhat.

July and August have been the toughest months by far. K.C. has had so many self injurious behaviors we are just now getting them under control. This little boy has made a dramatic change in two months time. "Can his Autism become worse I asked his Doctor?" The Doctor said that sometimes when children with Autism reach third grade or when they are about to become teenagers there is a huge hormonal change and he believes this is why K.C. has changed so much. Interesting. I don't know if that is what is really happening with K.C. but we have done things like increasing his Occupational Therapy and doing lots of sensory projects at home. K.C. really loves shaving cream and could play in it for the longest time. When his Big Brother tries to join him he leaves pretty quick. Big Brother has gotten so used to his brother up and leaving him he doesn't say a word about it anymore. I have been taking Big Brother to my sisters house on the weekends to swim with his little cousin Lynn Lynn. Adam and K.C. stay with me and we have even made a few trips inside McDonald's to eat lunch. We usually sit as far away from people as we can. I want to take the boys out and enjoy life without being stared at so we sit away from folks. I have no doubt that Adam and K.C. understand what is going on and know when people stare/talk about them. I used to not be sure of how much K.C. could understand but watching Adam and talking with my Dad he promises me that K.C. knows even though it appears he is not listening. When Adam came to stay with us after my Mom passed away he couldn't even put his own shoes on his feet. He put his pants on backwards. Adam has been doing sessions of ABA and guess what? This teenager is putting his own shoes on and almost, almost his own clothes. The thing is he can put them on but sometimes they are backwards or inside out. Going into ABA the first time with a teenager I was skeptical. I knew that ABA worked for young children but teenagers? It does work! Last night we made a trip to McDonald's and as I was putting K.C.'s shoes on, I asked Adam to, "put shoes on feet." I asked him to do it once and he hesitated but I was persistent and he did it! I think he was proud of himself because he was so calm in McDonald's. Being calm but persistent in what I ask of the boys is really working wonders. Sometimes you just have to let them do it themselves even if the task seems to big and watching them struggle to do something hurts. After all we are Mom's and we want to do anything we can to help our kids. Adam's ABA teacher said that I am helping by not helping. He was right.

The boys are in school finally! It seemed like the longest Summer but to be honest I sure do miss all three during the day. I feel lost without them and sometimes I wander this house picking up a favorite toy of theirs and just thinking and hoping they are all o.k. at school. So far the boys are adjusting well to school. Big Brother goes to private school and Adam and K.C. go to a private Autism school. We have gotten a routine down and the boys know what to expect each morning. During the morning time our helper Tacey makes breakfast for all three and packs their lunches. I help them get prepared for school. Adam is still eating Eggo Waffles and is as thin as a rail. He likes them toasted extra crunchy and will drink a tall glass of orange juice. K.C. has been eating Life cereal, just plain life cereal minus the milk (he's allergic). He'll drink Apple Juice. Big Brother will eat just about anything you place in front of him. Packing two Autistic kids lunches has to be the hardest part. Their teachers have refrigerators in the classroom thankfully and a microwave. I literally have to think and think of what the heck to have Tacey pack for them. K.C. eats a whole lot but it has to be the same things everyday. Adam eats very little.
I did manage to do something for myself! I went to the mall and ate by myself and then I walked through the mall to Sears and bought a new bra and socks. I am going to buy some new clothes soon because I have been losing alot of weight the past three months. I haven't been dieting but I have been busy and stressed at times so maybe that did it. I can now fit into a size 10 sometimes and a 12. While I was at them mall I walked past a store called, "Hot Topic." It's a store that is definitely for teenagers. I started thinking about Adam, he's a teenager, why can't he wear these clothes? He may be Autistic but that is no reason he can't look "cool" as Big Brother would say. I bought him three pairs of pants, two pairs of shorts and the "coolest" shoes. He got alot of nice comments in his notebook from school. He looks like a totally different kiddo. He's such a handsome young fella. I know my Mom wouldn't agree with what Adam is wearing but she was a bit old fashioned, I am not saying that is a bad thing but thinking of Adam and how he is a teen I thought he would feel more comfortable wearing a pair of Vans and dressing different. One thing for sure. Both K.C. and Adam like the same kind of socks. Both boys want to wear the "no show socks." Maybe they cannot tolerate the regular socks on their legs? When I came home from the mall and Big Brother had seen what I had bought for Adam he immediately said, "Mom why can't K.C. and I have those clothes too, pleaseeee!" So the next day I made another trip to the mall and got two more pairs of Vans, four pairs of shorts, socks and four shirts. The grand total of this shopping trip was $532.00 and I can tell you I will not be buying anymore clothes for a long time.

Hope you all are well and thank you to everyone who stops by to visit "The Boys."

Thank you to Sir Nik's Mommy at, http://maternal-instincts.blogspot.com. I received the sign language videos and the boys love them. Thank you so much, you are sweethearts.

Tuesday, July 22, 2008

S.i.b.s.




K.C. has been having awful self injurious behaviors. I am really trying to understand what is setting him off. He can't stand to hear the water running or much of any noise lately. He doesn't want to take a bath because of the running water, he cries, hits himself and has yanked alot of his hair out down to the scalp. I am totally heartbroken. I can't sleep because I am worried, I just sit and watch him sleep, thinking about him, how can I help him? Will he always hurt himself? I wonder if he's very sad? There are so many thoughts going through my head.
I have been telling myself that not all days are going to be good. Some days will be tough, but most days are good.

I did take K.C. to the doctor today, his ears are fine, I thought it may have been his ears but the doctor said his ears looked good. The doctor really didn't offer any suggestions, as a matter of fact she just listened and stared at K.C which made him very antsy. She increased his Risperdal to 3 mg. I want K.C. to feel better but I am worried that the Risperdal will make him eat even more. He has gained alot of weight on the Risperdal. I am just praying that he feels better and I figure out what is going on with K.C. It must be so frustrating for him, he can't communicate to me how he feels, it has to be very frustrating.

When K.C.'s s.i.b.s. are happening more, Big Brother gets very worried and he is always on edge. He feels it is his place to watch over K.C. and stop him from hitting himself. I explained to him that it was Mommy's place to help K.C. through his s.i.b.s. and told him I loved him and thanked him for helping but told him, "I can always help K.C." Big Brother isn't very happy these days and has spent alot of time putting puzzles together with Adam or watching Disney videos.

Tomorrow I am going to have to cut K.C.'s hair very short so that he can't grab it anymore. His lip is busted from head banging, tomorrow I am just going to let him have a day without therapies, a K.C. day to do some of the things K.C. wants to do.

Big Brother and Adam are well. Today they watched Edward Scissor hands and then they watched Jumanji. They watched it upstairs away from K.C. because K.C. screams his head off if someone suddenly pops in a video. He runs around the house in a complete panic crying and covering his ears. I put a television in the kitchen and Big Brother has been using headphones to listen to whatever he tries to watch, if K.C. doesn't scream.

I just want all the boys to be happy. Please say a little prayer for K.C. to feel better, I am worried so much about him.

Friday, July 18, 2008

K.C. is uneasy. Adam starts ABA. Big Brother is at Summer Kamp.





Hello Everybody, I thought I would post an update on the boys.

Big Brother has been at Summer Kamp. Yesterday the camp had a family night so we went to watch him and his fellow campers sing and dance. Afterwards I watched him play games, say goodbye to the camper teachers and he ate candy, lots of candy. I found a new snack while I was there. They are called Flamin Hot Cheetos with lime. I normally don't eat much junk food but these were actually good. Big Brother had a great time at camp and was eager to get home. When we got home he was so happy to see K.C. and Adam. He kept saying, "I missed you guys!" He hugged K.C. quickly cause that is about all K.C. can tolerate when it comes to hugs and gave Adam a great big hug. Adam can tolerate hugs a little bit better than K.C. He had a really great time at camp.

Adam has started ABA in full swing. When my mother was alive she wasn't a big fan of ABA at all, he went to therapies and did try ABA for awhile but for some reason my mother never liked Adam in ABA. I have started an ABA program for Adam and he's doing well. When Adam first started in reminded me so much of K.C.'s first ABA sessions. Lots of screaming, getting up and stimming. We are working on sitting during a sessions with Adam. Before ABA he wouldn't sit with a stranger (his new ABA teacher) for more than a minute. We are slowly working on it and his adjusting very nicely. Even though Adam is a teenager I feel that ABA will help him so much. It's never too late for ABA. I have some guilt about starting the ABA program with Adam but I want what's best for Adam and I believe this is it. I talked to my Dad about ABA and he agreed. He told me to do what I thought was best for Adam. My Dad is not the same person, he is so depressed and has lost weight. The boys and I visit him on a regular basis. I am trying so hard to move forward with the boys, when I see my Dad so sad I feel like I have taken two steps back. I hate that I feel like that. I feel like I am being so selfish. I miss my Mother so much, it hurts badly. I get a rush of sadness in the pit on my stomach when I think of her. I just really want the boys to be the best they can be. I want them to keep moving forward always. We will look back on special days, but for now these boys are my top priorities.

K.C. is not doing so well. His little face says it all. He looks so uptight and distant these days, I just don't know what is wrong with him. His crying and screaming has been happening everyday, when I try to calm him his s.i.b.s. are awful. He seems so uneasy and has been getting into alot of things he never did before. I don't know if it's a sensory issue or not but he has been dumping shampoo or any liquid he can find on the floor and rub his hands in it. He screams his head off when I stop him from doing it. He has been covering his ears as well. He has always covered his ears but now it's happening more. I really have to figure out what is wrong with my boy. We have a doctors appointment next week. I just have to get through to next week and try my best to stay calm, talk calm and not let on that I am upset or he'll become more upset. I sent our helper out to (Miss Tacey) Target to buy 4 cans of shaving cream and more shampoo and bubble bath. I can't help but think this is sensory issue. Poor little kiddo, I hope that this passes soon and he's back to himself. Our schedules haven't changed and we have really done a great job of sticking to our schedules, getting to therapies and being on time.

We hope all of you and your kiddos are doing well, it has been a very hot Summer here in AZ. today we are in 111 degree temp. We Will go for our swim this evening and then stop off at McDonald's for one plain hamburger, a large Diet Dr.Pepper, a Large French Fry, one grilled snack wrap with ranch for Big Brother, one Arctic orange shake for Big Brother and two blue powerades for Adam and K.C.

Monday, June 30, 2008

Very Scary

We have been swimming alot these days. It's just about the only fun thing to do in Arizona because of the extreme heat. It has been 113 and 111 and tomorrow 110. Too hot for us! We never get used to it even after living here for years.

I have been taking the boys swimming after 8:30 p.m. because we want to avoid questions and stares. I have gotten so many, "what's wrong with your" and "Why isn't he saying anything?" I am tired of explaining and hearing kids laugh at K.C. and Adam when they are excited and flapping or humming. It hurts to hear someone laughing at them and Big Brother feels awfully sad when people do that too. What surprises me the most is that the kids parents just sit there reading a book or talking on their cell phones.

We live on Private Property and it's always been safe for years until last night. The pool is a 7 minute walk for us but having so many pool toys and three boys to keep up with (If Adam runs I know I won't catch him) we always drive the van. We left at about 8:40 p/m/ thinking no one would be at the pool. We were right, some folks were just leaving as we unlocked the pool gate. The boys have alot of fun splashing around freely without any worries. After about 30 minutes I noticed a car pull next to my van. Big Brother watched intently hoping it "wasn't people coming to swim." No body ever came to the pool but I could hear them talking. I walked over to the pool gate quietly to see who it was because I had a nervous gut feeling. I saw four black guys, one guy was leaning against my van and the other guy was staring into my van. I didn't recognize these people and knew they didn't live here because I have been here for years and would have seen them at some point. I knew they were going to steal the van. I was so scared, so very scared. I didn't know if I should just pack up with the boys and walk out the gate. I was scared to do that because if they were trying to steal the van and knew they were caught doing it they might hurt us. So I called 911 and told the operator. I can't even begin to tell you how scared I was having the boys with me. The only thing the reassured me was that we had a key to the pool and they didn't. The operator stayed on the phone with me the whole time, I told her I was scared, I had three boys with me and two were Autistic. She said the officer was only two minutes away. It seemed like forever. I let the boys play but Big Brother was scared because he kept saying, "we won't have a way to go anywhere what are we going to do!!" While I was on the phone with the operator I heard a glass break. I told the operator and she said the officer was coming down the street and I could see his headlights and lights flashing, he caught them before they took the van!! Thank God!! Big Brother ran over to the gate and watched, I called him back over to us and got the boys out of the pool and let another officer in to talk to him. He said the window was broken but that they were caught! I am so grateful that they caught these guys. Can you imagine being without a car/van and having three boys? We are in the van more than home it feels like on therapy days. I got the window to the van fixed today. I still can't believe it. Why do people have to be like that? I just don't get it. The guys who were trying to steal the van looked to be about 20 years old. I told the officer I wanted to leave to get the boys home, they were getting antsy and as we headed out of the gate I heard an officer say, "your name is Levi?" He was talking to the guy who tried to take the van. The guy looked at us as we walked out. I had to say something. I did say something. I said, "thanks alot for breaking our window and trying to steal our van, did you know this van is used to take my Autistic kids to therapies?" He said nothing. I am praying that he thinks about it and changes.

We are all safe and when we got home Big Brother was visibly upset. He gets so hurt when he knows someone "is real bad" or "makes fun of his brother or Adam." I worry about Big Brother alot because he takes things very hard and dwells on them. We will keep talking everyday and I'll give him lots of hugs, he'll start to feel better :) What a world.

Friday, June 27, 2008

Happy Birthday To K.C.



Happy Birthday to you little buddy! K.C., Adam and Big Brother celebrated today with cake, (just wanted it to be the four of us) special ice cream K.C. could eat if he tried and 2 Amy's frozen pizzas that Big Brother and I put into the oven. Even though K.C. won't touch cake or ice cream (he screams bloody murder) he likes to see the candles flickering. I have learned something or should say I have figured out something that K.C. had been trying to tell me. He covers his ears quite a bit, I used to think it was noise or something I couldn't hear that bothered him. Today as I brought the cake to the table he covered his ears alot. I have figured out that it means, "no cake." Or it just means he doesn't like something.

I bought him three new outfits to wear from Target. As Big Brother "helped" blow out K.C.'s candles we handed him his gifts. His Daddy couldn't be here this birthday :( K.C.'s daddy got him savings bonds and a magna doodle. Big Brother handed him the outfits I had bought him and he opened them very slowly then tried to up and leave but I was able to get him back to the table without him getting too angry. When he touched the clothes he IMMEDIATELY began looking for any tags on the shirts. There were tags of course and he totally lost it when he seen the tags. I hurried upstairs to get the scissors (I keep them hidden just in case) and came back down and cut the tags out of the clothes. He was just too angry and it was the kind of angry that I call, "too late he's not going to come back from this one" kind of a anger or frustration. I brought him into the living room away from Adam and Big Brother. Big Brother kept calling, "Mom I am going to cut the cake for us." I let him cut the cake but told him not to annihilate the cake and to use a butter knife. He cut a piece for Adam but he didn't touch it. Adam is pretty much skin and bones:( He just wants waffles all the time. K.C. was still angry but he was crying now and not screaming, a good sign.

I did manage to leave him in the living room and put waffles into the toaster for Adam. When K.C. is in the no turning back mood I don't leave him alone because he will beat himself in the head or hit his head on the floor. It never came to that today and he did pull himself together. I was so proud of Adam because he STAYED at the table with Big Brother the whole time (even through K.C.'s screaming)! Big Hugs for Adam and K.C. :) Even though it may have seemed kind of disaster it really wasn't. Both boys did a wonderful job of keeping it together and I am still so surprised at Adam as I sit here. He surprises me alot. I have found that K.C. and Adam are helping each other in many ways but don't realize it. Like the way K.C. is helping himself more, like the way Adam stayed at the table while I stayed with K.C. Somehow I really feel they totally relate to when they see each other having a very hard time. For them to see that there are other kids that are experiencing the same sort of things that they experience themselves really helps if that makes any sense.

K.C. did sit back down at the table to eat pizza and drink a mango fruit drink. Big Brother and I kept quiet for awhile because we know that when K.C. is pulling it together any words during the pulling it together period will set him off. We talked after about 10 minutes quietly.

I thought to myself I wonder if I should have just put the candles in the pizza? Now I have all this cake left over. I will have to take it to my sister and give some to Linh Linh. I would have invited Linh to K.C.'s party but she has always been a little afraid of K.C. I asked her about him and she said she was scared of him.
It was a good day all in all. I can see changes in the boys and it's real positive :)

Tomorrow is Saturday and I will be going to pick my Dad up and take him to synagogue. Miss Tacey will stay with the boys for a couple hours. My little reporter (Big Brother) is always watching to be sure nobody is mean to Adam or K.C.

It has been triple digits here so most of the time we try to stay out of the hot sun.
It will not cool off here until December :(

Thursday, June 19, 2008

Getting Away...






Twice a year my little brother Adam would go to Carlsbad CA. with my Mom and Dad to visit the ocean. My Parents have had a timeshare there for a few years. My brother has always loved walking on the beach and my Mom would look forward to the 6 hour drive to Carlsbad and mostly the gorgeous weather.

My Father as I mentioned before is living in assisted living. He reminded us that it "was our turn" for the timeshare. It was very hard to think of getting away without my Mom with us. My Dad didn't want to go but really wanted us to go because Adam loves the beach so much. I thought about it. Thought alot about it and decided to go. Maybe this is just what the boys need, to get away from everything and clear their minds.

So it would be me, Adam, K.C., Big Brother, College Boy and our helper, Miss Tacey. We planned to stay for 4 days so I had alot of packing to do for the boys. We have worked out a pretty good system of doing things since Miss Tacey has moved in to help us. She has been wonderful. She knows so much about Autism and I can truly see that she cares about the boys in her eyes. "My little reporter" has only said positive things about her and my gut feeling is good. Miss Tacey helps with K.C. and Big Brother. I am always with Adam because I don't want anyone getting pinched or scratched no matter how much experience he or she has with Autism. I love Adam dearly and understand why he pinches. He has been doing wonderfully and hasn't been pinching very much these days. K.C. has really made some huge changes since Adam has joined the family. Having a teen with Autism is tough but having a teen without Autism is tough too. K.C. seems to have more confidence and has learned to do more for himself. I have seen K.C. watching Adam out of the corners of his eyes and I really believe that he loves Adam.

It took 6 1/2 hours to get to Carlsbad and the boys Daddy met up with us there. Daddy has been staying mostly in San Francisco because of his job. We all met up and began unpacking our stuff into the room. K.C. did have a big smile on his face when he saw his Daddy waiting for us, Big Brother was thrilled so much because I kept it secret from him. He had no idea that his Daddy would be meeting us there so he was a happy kiddo! Adam looked anxious when he saw the boys Daddy. I guess that next time I really need to show him a photo of the boys Daddy so that he knows what to expect when we arrive. I just thought it would be a nice surprise for Big Brother and K.C.
We all planned to eat at an outdoors Mexican restaurant. We really wanted to be outdoors because of the boys, "just in case." The weather was so nice so sitting outside was a real treat. When we left home it was 113 degrees, 6 hours later it was only 72 degrees when we got to Cali. K.C. ate flour tortillas with nothing on them, just heated and crispy. Big Brother ate Carne Asada and Adam ate a cheese crisp (made very crispy for Adam and only cheese) K.C. eyeballed Adam's cheese crisp and snatched at it twice. K.C. can't have real cheese because of allergies. The boys did a super duper job eating and were such young gentlemen. We only got a few stares because of the noises that Adam and K.C. make. The two of them together generate alot of hums and screeches, "my little orchestra."

When we were all finished eating we walked to the beach. The ocean was just so awesome and immediately I could see how at peace Adam was with the water. He watched the water roll in and out and was mesmerized by it just as K.C. was. Big Brother ran all around the beach collecting shells and anything unusual looking. He did find a really beautiful shell his daddy put a small hole in and made a necklace out of it for him.

It was a really nice trip and I only wish we lived near the ocean for the boys sake. It was wonderful seeing all the boys love the ocean equally and they all were doing pretty much the same things and loving every minute of it.

We got up early everyday around 7 a.m. and walked down to the beach to watch the surfers surf. It was quite foggy on the beach in the mornings.
I feel I have really connected with Adam. I am understanding him more and more each and everyday and couldn't imagine him living anywhere else ever. I can get some smiles out of him and it's such a great feeling.

I just want all the boys to be happy.

Every day I think of my Mother, I miss her so much. I see Adam's eyes and think of my Mom. It's hard being without my Mother, I still keep thinking, "oh I can't wait to tell Mom about...." then I realise that I can't.

Each day is hard but at the same time it's getting a tiny bit easier with each day that goes by. It's hard to explain.

My Mom had always asked that I never put any photos of Adam up on the Internet. She didn't like me putting photos up of Big Brother or K.C. for that matter. She was always very nervous about having any photos of the kids on the Internet so I will always remember how she felt and will never post photos of Adam.

Things are always very busy here, I am just so grateful that I have found such nice people to help with the boys. I am so grateful that College Boy helps us so much.
Monday K.C.'s support coordinator is coming for his ISP visit. There will be some big changes coming up in August in regards to his school and therapies.

In July K.C. and Adam both will be participating in a study of Fluoxetine (Prozac). It is suppose to help with repetitive behaviors. There will be nine visits and it is about 14 weeks long. They will have to get an EKG and blood work done. I am hoping it helps the boys.

Some photos from the trip and a video of K.C.


Tuesday, May 27, 2008

I have help



Hi Everyone,

It's been awhile since I last blogged, I hope everyone is doing well and want to say sorry for not stopping by lately.

Life has been so busy here. Having 3 boys keeps you on your toes, things are settling down a bit and we have finally fallen into a good routine for therapies and school.

This Sunday we went to visit my father. He has decided to move into an assisted living community so that he can have help but still have his freedom.

I worried the night before how Adam was going to react to seeing our Dad in a new place. I worried that K.C. was going to see Adam upset and cry. I did everything I possibly could the week before to prepare both boys for the trip to see Dad/Grandpa.

I went to Wide World of Maps and got the photos of my Dad laminated since Adam will eat/chew on a regular photo if it's not laminated. He also has chewed a fairly big hole in the seat of the van. I am taking him to the doctor Thursday to discuss his eating problems. He is so skinny, I can't really get him to eat much, only Eggo Waffles. Morning, Noon and Night, Eggo Waffles. It's tough to get him to try something new as well. The problem is he'll eat things that are NOT food easily but won't eat real food for me.

Our trip went well. Big Brother held K.C.'s hand and I stayed within arms reach of Adam. He's fast, faster than I am, K.C. I can catch but Adam is like greased lightening. When we walked into Dad's new home Adam pinched me. I knew he was nervous being in a new place. I was even nervous myself, biting my nails, Adam pinches instead of biting his nails. Everyone does something when they are nervous. K.C. made a beeline for the DVD player my father has. My Dad smiled for the first time in a long time. He went to Adam and gave him a big hug, I watched Adam, he did everything he could not to make any eye contact with my father. He is this way with everyone. K.C. has poor eye contact but Adam has virtually no eye contact. I do catch him peering out of the corners of his eyes alot and I'll say, "is that a smile I see, did I see those eyes?" Sometimes I will see a grin from him and I know he is happy when I say that because he sticks around. Even though K.C. and Adam are both non verbal, their body language and actions say almost as much a words could. I love the boys dearly and feel so lucky to have them. Each day I pray I am making a difference in their lives. Sitting with the boys and doing an activity with them or reading with them makes me very happy. Some days are very tough days, then there are the good days. We have more good days that tough ones.

Taking Adam to places that my Mom used to take him to is tough. It's tough because nearly every time I take him I always hear how much they miss my Mom and I know Adam hears it. I miss her terribly but I don't think it's good to bring it up every time. He hears and has feelings, I asked his therapists not to mention my Mom's name so much in front of Adam before a therapy session begins. I just want him to be able to get the most out of each session without any sad thoughts.

K.C. has been doing well and has even started to do more things for himself since Adam is with us. The truth is, sometimes Adam needs more help than K.C. and I get wrapped up with Adam and K.C. will try to do for himself. I feel badly about this sometimes but my sister says she thinks "it's great!"

Big Brother is my "little reporter" these days. He helps me so much, this little boy is an awesome kiddo. He will be going to 2ND grade in August, Adam goes to a private Autism school and K.C. will be going there in August as well.

I have started to search for a part time Nanny. I could use the extra help on certain days, shopping days, doctors appointments and Big Brother had a violin recital I barley made it too. My sister helps a bit but not very much. She's young and constantly on the go. Another change I made was I hired a part time cleaning company to come in twice a week to do the heavy cleaning for us and it has made a huge difference! I have more time for the boys and I feel so much better knowing I have the extra time with them. I love spending as much time with them as possible. Family is so important, I realize this even more now that my Mother is gone. When I do find a Nanny I will have her references thoroughly checked out and a fingerprint/background check as well. I will certainly use a Nanny Cam and would not even consider having a Nanny without one. My "little reporter" will be watching intently, if he sees or hears anything that worries him he'll report it.

I will be stopping by to visit everyone soon, I hope you kiddos are all well and that you are doing good too. Thank you for all of your support, it means the world to us.

Saturday, May 03, 2008

Slowly but surely.

It has been a challenging week for our family. I am so heartbroken, I miss my Mother so very much. I haven't had time to cry. I have been so busy with the boys, it is good that I have been so busy or I would sit and think all day long and cry. It is so hard, I keep thinking I can pick the phone up and call her during the day, I don't know why I keep doing that.

How all three boys are doing.

My little Brother (Adam) is trying very hard. He was with my Mom always and it is has been very rough on him. The four days of having Adam at our house was tough, bless his heart, it has to be so confusing for him and horrible for him. He hit me all week but thankfully didn't hit K.C. or Big Brother. He's a teenager so his hits are much different than a smaller kiddos. The last time he hit me he was pacing the floors in front of the door, my Dad talked to Adam, I don't know if he understands completely that Mom is gone because he is always looking and pacing as if he's going to go somewhere or someone may be coming. The last time hit me he hit me hard, I feel horrible but I yelled at him, I told him that I missed Mom too and that he had to stop hitting me, I told him I miss her too again to be sure he understood. His hands dropped down as if I said the right thing. I really feel we have made a connection, I know he understood me, I could feel it. Things will get better but we all have been through so much it is going to be a long time before things are "back to the way they were, as Big Brother asked me. I want to make a collection of my Mom and Adams photos and go through them with him at bedtime or whenever he has the book and tell him what's happening in each picture. I have a very strong feeling he would want me to talk about Mom and show him photos but I am not sure if it's right for Adam or not. His hands did drop down and he did stop hitting when I said, "I miss her too." Maybe he wants me to talk about her? I am trying very very hard to read into Adam. He's non verbal and communicates with grunts, screams and pulling my hand and putting it on what he wants if he can't get into it himself. I talked to Adam's therapists and we all agreed that the sooner we have him back in school and back to his schedule the better. He has been going back to school and things are getting better. I even managed to get him enrolled in an Autism Summer Camp where his therapist that works with him now will go along with him as long as their expenses are paid.

K.C. has had a rough time with so many changes. When I brought my brother home with us, Adam REFUSED to ride in our car. He has been in our car before and I am not sure why he didn't want to be in it this time. My Dad said to take my Mom's van and use it for Adam. Sure enough he hopped right in. Only problem was that K.C. REFUSED to ride in my Mom's van. He screamed, fell to the ground and I wanted to cry. After 20 minutes I finally got him in the van and we all left. I felt sad driving my Mom's van, thought about what she might have been thinking when she drove with my brother, about Autism. Did she ever cry when she drove? It's hard to be in the van but for now it is helping with the boys and they are getting used to riding together. I did something I never thought I would do, when I enrolled Adam in summer camp I asked K.C.'s therapist that tutors him at home if they would go to Summer camp with K.C. One agreed to! I can send K.C. this Summer and not worry as much as if he knew no one there. It will be a first for K.C. and I think it will help him with socialization skills. Just being in a group of kiddos that are his age. I will be able to spend time with Big Brother who has been very quiet lately. It is all overwhelming for him, he is now the middle boy, sees the big changes and maybe he feels lonely having two boys in the house who won't play with him. I did get him to smile yesterday, my brother was in the living room with us, he has a very long chewy tube, it's more like a long clear thin hose type thing, I always tell him what my Mom used to tell him, "Adam the hose is in your mouth, not on the floor." He drags it on the ground when it's not in his mouth. I don't know where my Mom got it but he has had it for a long time and it goes where he goes. K.C. tried to snatch it away from Adam and I made K.C. give it back to Adam because it is Adam's and he needs it. K.C. threw a huge fit that he didn't get the tube. Big Brother said, "now K.C. knows how it feels!" I said, "what do you mean?" He says, "he has always been first, now K.C. is second and Adam is first, I guess I will always be third." I looked at him and said, "hmmmm, well it's better that being fourth!" He said, "who's fourth?" I told him, "me ya big dummy!" That gave him a fit of the giggles. I am glad he is smiling again.

My Mom is gone and my heart will always be sad because she's not here, but I can tell you having these boys with me and seeing them smile makes my heart happy. It is going to be a challenge but I am determined to give each of them the best, happiest lives possible.

I have learned something from my Mom that she did for Adam since she found out he was Autistic years ago. She saved for him, had life insurance so that when she did pass he would be well cared for for his lifetime. She always knew the right things to do. I talked with our family lawyer and he said because of my Mom, Adam, me and the boys would be able to make it without worrying about money. I wondered all these years when my Mom said, "if anything ever happens to me you will have to take care of your brother." I always said, "I know." I Never thought it would happen even though I knew my Mom was sick. She knew I would be able to care for them, I understand things more now.

Thank you for all of your thoughts and prayers, I don't really have any friends that stop by our house. I feel very blessed to have all of you and to be able to talk about my feelings here on the blog.

Wednesday, April 23, 2008

My Mother

My Mother passed away last night. She has had many health problems but I never thought she would go so suddenly. The Shivah begins today and I am going to pick relatives up from the airport, some are coming from Illinois and some from Israel. I miss my Mother so much. There was so many things I should have told her but can't cause she's gone. Growing up my Mother always said, "you have to take care of your little brother if anything happens to me." "He's you brother, he's family." My Dad has so many health problems as well. He won't be able to care for my brother. My brother will be living with me and the boys. I don't know if I can handle it but have to no matter what for my Mother. My brother is self injurious and profoundly Autistic. Having two kids with Autism and Big Brother will be the hardest thing I have ever had to do. I am scared to death. My brother is a teenager and he's a strong guy but still like a 4 year old. He has a alot of help and I have to start gathering all his therapists names and try to work out having two take kids to therapies which scares me cause everything is overwhelming. How will I keep homeschooling K.C.? I am trying to to think ahead because already my brother knows things have changed and K.C. knows everything is different, K.C. has been hard to handle with so many changes, it is hard, I know he's feeling sad and confused just like all of us and so is my brother. Big Brother is scared to see his grandma one last time today, my Daddy hasn't left my mother since last night and will stay with her til she is buried today. Big Brother has picked out a beautiful rock to place on top of where she is buried. Please pray for us, we need strength, we need all of your thoughts and prayers. Please let your loved ones know how much you love them and how much you need them. My Mother and I didn't get along very well all the years and I just wish I could tell her I am sorry and I love her.

Saturday, April 05, 2008

After 3 weeks and 2 days.....

After 3 weeks and 2 day of practicing with his ABA teacher, K.C. is an official bike rider! I never, ever thought it would be possible. Could my severely Autistic child who has no language do something a complexed as riding a bike? The answer is a big, "YES!" K.C.'s ABA teacher and I have been going outside with him and his bike each sessions through each week. We got him to sit on the bike fairly easily but could not get him to pedal or "push" with his feet. I got on my knees beside him and manipulated his feet each and everyday. His ABA instructor came up with a better idea, to stand away from him and hold his super favorite video in the air while he sat on the bike. I didn't let him get off the bike to run to get the dvd. Instead I manipulated his legs each time. Some days he was totally ticked off and wouldn't go near the bike. We just kept at it for three weeks, two days. He finally pushed his feet to get to his dvd! We cheered him on each and everyday even for the tiniest attempts, I really believe it kept him motivated to learn.

Now we have been riding (Big Brother and K.C.) through our neighborhood with me along side of K.C. He doesn't know about any safety rules such a the stop sign or looking for cars at all. Maybe it will come with time, I have printed stop signs off the Internet and we are working with his ABA instructor on that.

I am still amazed, I never thought this was even possible at all. Lately K.C. has proven everyone wrong. I am thrilled. It is hard work but just look at him go! He's focused and looks relaxed. I cheer him on and I know he hears me but he doesn't smile back, he's very focused on riding. The best part is that he has no time to stim. His hands have to be on the handle bars and his feet moving. Big Brother is totally happy that he, "has a friend to ride with!" He really feels very happy.


Our inspiration is Charlie from, http://www.autismvox.com. This young man is also Autistic and an excellent bike rider. He's such an inspiration, I'll admit had it not been for me reading about Charlie and his bike riding and Autism I may have never thought it possible for K.C. Thank you Charlie for being such an awesome kiddo!

This is K.C. riding his bike like a pro after 3 weeks and 2 days!

Now if we could just get him to wear a helmet!

Monday, March 31, 2008

My Feelings - Autism The Musical




On March 29Th (Saturday) we took K.C., Big Brother and my niece Linh Linh to an Autism Picnic. We go every year, it's a very nice event for the children, there are volunteers from Easter Seals, Guthrie and Valley Of The Sun helping the kiddos with Autism have fun.

Last year at the picnic K.C. watched his brother have fun. This year K.C. bounced in the inflated bouncers with his Big Brother! When K.C. first tried to get into the bouncer he couldn't stand. There were too many children in the bouncer and he was getting knocked around. I must have had an extreme look of worry on my face because the girls who were helping the kids in the bouncer shouted to the children, "two more minutes and everyone out." Then the girl turned to me and said, "when the children get out of the bouncer we will let him bounce alone for 2 minutes." I couldn't believe it. I almost cried knowing someone wanted to give K.C. a chance to have fun - alone!

My dear friend Lora at, http://griffinblaise.blogspot.com sent me a link to watch an Autism Musical online. Here is the link to the musical if you want to watch it, http://www.hbo.com/docs/programs/autism/video
When I watched the musical it gave me alot of mixed emotions. I thought about the musical for a few days after, then yesterday, it hit me like a ton of bricks. In one scene in the musical there are a group of Parents sitting in a room talking about their children. One Mommy said that she felt that her daughter wasn't valued as a human being because of her Autism. The Mommy was very sad, crying knowing that in this world there are people she felt didn't value her daughter because of the Autism. Another scene in the movie was of a beautiful teenage girl typing on the computer. Her Mommy asked her, "what is Autism?" The girl typed, "damaging." The girl looked sad, very sad. You really have to watch the film to know what I am talking about.

I thought about K.C. I have thought alot these past three days. Does K.C. feel he's damaged? I wonder if he's happy? Does he know he's Autistic? Does he feel people don't value him because of his Autism? I thought alot about these things. I cried and cried. I prayed I have never done anything to make K.C. feel "damaged" or "not valued." I have never seen him this way ever. As a matter of fact if someone said he was "damaged" there would be some serious words coming out of my mouth at the person.

I talked to the boys Daddy and he said, "maybe that's they way the little girl felt." "It isn't how everyone feels." Still, I am doing everything I can each and every day so that K.C. feels loved, valued and happy with the way he is. It breaks me heart to think if K.C. was feeling sad. That is the parts of the musical I didn't like at all. I know that they were just the was the folks felt at the time but still, it hurts.

I watched the rest of the musical and thought the director did an amazing job with the children. I was very happy that the musical included non verbal kiddos as well. The children looked very proud of their accomplishments at the end of the musical. The Parents were thrilled and very proud for the kiddos. It was a good musical, I guess that it was a sort of awakening for me.

While we were at the picnic, K.C. did something I thought was amazing. When we have been taking him out, in public, he usually has his hands in his mouth, flaps and finger flicks. We have been working on having him hold his own hands together. In the video you can see K.C. waiting for his Big Brother to get off the train. He gets antsy but has his hands together! Just look at the beginning of the video! He does a great job, it's a first that we have seen him trying to keep it together with what we have been teaching him. His ABA teacher was thrilled for K.C. when I played the video. I am so proud of him too. Sorry the video is so grainy, I didn't have the usual camera that day :(

Friday, March 21, 2008

Skateboards



I have been taking Big Brother to the skatepark since last Summer. He has learned so quickly, the last time we went there was a kiddo standing at the edge of the ramp trying to find the courage to go down. It's steep and kinda scary. This little boy was 10 years old, (Big Brother asked.) Big Brother wanted to help this kiddo, he encouraged him so much.

Out of all the children in the skatepark almost NONE wore helmets.

K.C. has also been going to the skatepark since last year, just watching his brother. Well today was different! I always bring 2 skateboards just in case Big Brothers busts one. K.C. took one out of my hands and tried to make it up a mini ramp. We helped him up and he sat on the skateboard and went down on his butt! He loved it totally! Now, I have to get this little boy a helmet! Looks like we are going to have two skater boys in the family!

(The t shirt that K.C. is wearing is College Boys. I don't let him wear shirts like that usually. What happened was as I was getting him dressed the shrit was inside out, I went to get another and he had a major fit, so I let him wear it, gotta pick your battles I guess :)

The shirt says, "stop bitching and start a revolution." The kids at the skatepark liked the shirt in fact, 4 kids came up to K.C. and said, "hey little dude I like your shirt."

The first video is Big Brother skating. The second is my little K.C. doing his own version of skating! Go K.C.!



Tuesday, March 18, 2008

Big Changes

As many of you may already know, I have been waiting for the day when K.C. will give Mommy a kiss. I am happy to say, I got that kiss! He did it! We were taking pictures (Big Brother the photographer) and I leaned in and said, "give me kiss." I have said it a million times to K.C. and didn't expect him to give me one but he did. He leaned in and put his puckered lips on my forehead! Big Brother just stood there in amazement and immediately said, "give me a kiss K.C., give brother a kiss!" Well K.C. didn't, probably because of the commotion his kiss did cause, lots of hugs and lots of praising him. Can you guys believe it? I felt such a strong connection, he really does love his Mommy, it was amazing, lots of happy tears.

I have seen some very big changes since taking K.C. out of school. He seems so much more relaxed, happier and not anxious. No headbanging at all! I never thought I'd say that, no headbanging!

The best part about homeschooling K.C. is that I get to spend time with him. I don't have to constantly worry about him being at that school. I wish I could have kept him there, I wanted to keep him in school, but it just didn't work out in the end.

Some things that K.C. has learned in this short time at home are, he can match colors into groups, (still doesn't understand, "give me yellow" but if you sign the colors he seems to get it better. He successfully matched 4 times last week with signing the colors along with saying the color. He also can sort objects (any objects) by sizes into groups, he is really good at it.
We have been working with learning to use scissors as well. He doesn't like me holding his hands but I really think he's going to pick this skill up soon.

We got a "Service Plan" through the district. It means that even though K.C. isn't in school the district is still going to pay for some services. I could pick, Speech, OT, etc. but the thing is I could pick only 1 service. I picked help from a Tutor. So a Tutor comes out to our house to work with K.C. I asked the tutor to work with him with holding a pencil hand over hand to write his name. The reason I asked for help in this area is because this is the area that K.C. gets frustrated with the most. He does get frustrated but the good thing is we can stop for a bit, call him back to the table and work some more. Taking breaks has helped tremendously. He is always willing to come back to the table. I am happy that we can give him a break, let him play a bit and then have him come back. I remember his teacher saying, "I only have so many hours in the day." I think this is why he got so frustrated, he could sense it from her, now that it's gone, he's doing better. If he's stimming I don't stop him, it has helped to calm him and get him through. I just have to be careful not to let stim too long.

I have been working extra hard with potty training too. I have figured out when he is most likely to be wet during the day by writing down what times I change diapers. It is always just about the same, around 8:30 a.m., 11:00, 1:00 p.m., 4:00 and 6:00 p.m. At night he's definitely in diapers. He's been going pee most of the time I take him to the bathroom. We have had lots of accidents but they are becoming less and less. I am so proud of him! When he does have an accident it's really important to not let K.C. know that it upsets you in any way. Using a calm voice is working wonders.

Three days a week I have been taking him to parks, we see mostly toddlers there with the their parents but he's still getting to be around other kids. He still won't play with them or even look their way. I want to take him to the library soon, we are going to take it slow.

Big Brother is in school :) Actually it's Spring Break, here all this week and he's at home. Tomorrow we are going to go to the skate park.

Passover is just around the corner, this year will be different. I really think K.C. may sit just a little longer. We are surely going to try and if it doesn't work out I will let Big Brother stay with my Parents and I will take K.C. home.

I want to thank Melinda from Dear Noah, http://www.dearnoah.blogspot.com. She has helped us with starting homeschooling, provided us with super good links and wonderful ideas to help K.C. Thank you so much Melinda and Noah. Thanks to everyone for your support, it means so much to us.

We hope you are all well and the kiddos are well too :)

Tuesday, February 26, 2008

The Flu


Hello to everyone, we have all had the flu. Three weeks of the flu to be exact. Big Brother, K.C. and I were so darned sick, Big Brother had to go to the ER for an I.V. because he was so dehydrated. The good news is we are all feeling better, finally!

I have alot of catching up to do!

We didn't do a whole lot of homeschooling for K.C. over the three week period because he was just too sick. We are working now for short periods of time. He has a very short attention span, he looks away alot and it is hard to tell how much is sinking in because his little face doesn't give my any clues. But we won't give up! I really believe repetition will be the key to helping K.C. learn. He is much happier these days since I have taken him out of school. Not one head banging incident, not one!

We have also been going for walks, the weather has been really nice. It was 77 degrees today and tomorrow it will be 81. I really have to watch K.C. very closely when we are outside. When he starts walking he never looks back. In fact he really doesn't even stop when walking, full speed ahead for this boy. I posted a short video of him getting ready for our walk. He doesn't wait for no one, just shuffles away. Big Brother calls him "a little shuffler" because of his walk. Do you guys think he shuffles when he walks? I agree with Big Brother, he's a shuffler. It's a cute walk. The voice you hear in the background is Big Brother playing ball with a neighbor kiddo. K.C. didn't get far, towards the end of the video you can see Big Brother's shadow coming into the video heading him off.



Big Brother is feeling better, this afternoon he asked if he could get a haircut at Fantastic Sam's so off we went. K.C. did a good job waiting for his Big Brother to get a haircut a sat on the floor and played with the toys they had there. We were the only customers thankfully. K.C. will not play if another kiddo comes along. He'll just get up and walk away. Big Brother got another Mohawk. He loves Mohawks and to be honest, he hasn't had one for quite awhile and I missed seeing it.

We hope you are all well and I'll be catching up soon!

Friday, February 01, 2008

What's best for K.C.

(K.C. 6 1/2 and his Big Brother 7 1/2 years old)


I have finally made a decision regarding the SMD classroom. The stress that this has brought on us is just too much. I have decided to keep K.C. home, home school him. On Monday I am getting all the necessary paperwork together (affidavit) and getting it notarized (the homeschooling paperwork). I did talk to the districts lead Psychologist and we are going to have a meeting for a Service Plan for K.C. A Service Plan is services the district still must provide K.C. even though he's home schooled. The good thing about the Service Plan is I get to choose which two services I'd like for K.C. to have, the ones I feel are most important. So when he gets these services I will be going with him while he is having for example, O.T., Speech etc. whichever ones I feel are most important. It's just a huge relief to not have to deal with the school system anymore. Maybe he's just not ready for public school yet.

He is still receiving O.T. and Speech therapy outside of school and one session of ABA at home each day.

We have alot of planning to do when it comes to academics, but I really feel this is going to be what is best for K.C.

Big Brother has been doing fine these days. He's been reading alot about Spiders (mostly the poisonous ones.) Tomorrow he's going to go back to the library and sit at one of the little tables and read. He loves the library, he likes to sit in the kids section and I have even noticed that he'll really watch what the other children are doing. He sure does want to have a friend. He has been talking about making a friend and how to do it. It will happen, he's such a caring little guy, I know he'll make friends soon.

The Superbowl is being played in AZ. and the supermarkets have been packed with visitors from New York (mostly I have seen N.Y. visitors) I am not a big football fan but like to watch the commercials! Hope everyone is doing well :)

Thursday, January 24, 2008

The Meeting

I really want to thank everyone for their advice before I went into this meeting.

There were 6 at the meeting, his teacher, me, psychologist, (smd classroom teacher who has been observing K.C.) mediator and our division of developmental disabilities case manger (long term care).

1. K.C. has regressed in nearly every I.E.P. goal that we created for him as a team.

2. K.C.'s self injurious behaviors are becoming so frequent that his teacher "only has so many teaching hours in a day to teach and his behaviors are going longer and he is apparently "lasting longer than the teacher has minutes to teach in a day."

3. He needs more help than they can provide him in his current program.

4. The program they want him in is for Severely Mentally Disabled students or "lowest functioning."

I have been crying all day long. Everyone at the meeting seemed to agree with each other that this program would be best for K.C. I didn't agree, in fact, I signed nothing, only the form that everyone signs to show who is in attendance.

I need time to think. K.C. is not mentally disabled he's Autistic, I repeated that over and over. He's almost 7 years old, he's just a little boy for Gods sake. I keep questioning myself, does Autism mean he's mentally retarded? I hope I don't sound totally ignorant. On his I.E.P. forms they have him listed as Autistic/Mentally Retarded.

I am not doing a very good job of advocating for K.C. Everything is becoming so overwhelming. I just need time to think it through. If I leave K.C. in his current program I am afraid he'll learn nothing. I think they have gave up on him and want him in the smd program.

Tomorrow I am going to visit this classroom. I am going to be totally honest, I am scared. Scared for K.C. In the back of my mind I had always hoped K.C. would be able to lead a good life as long as we did everything in our power to help him. I want him to have a good life, be happy, healthy. Now I am thinking maybe I have been trying to put the thought that yes, maybe K.C. will be very handicapped for the rest of his life. I may never hold a conversation with him, when I think of these things I feel like I am giving in to that life for K.C. so I put them in the back of my mind and try to think as positive as possible. Have I been lying to myself all along? Has everyone else seen K.C. differently all along, different that I see him? I see hope, he's smart, he loves us and I see him learning. Maybe not what the school expects, but I see him learning in life skills. He is making efforts to try to put a sock on his foot, he will go to the bathroom sink and if I stand behind him and tell him, "first we wash hands before we eat." He will put his hands under the water! I can then tell him, "dry hands", he will then walk to the towel and dry his hands! He really is doing so many wonderful things at home, many things. In fact his s.i.b.s. haven't been happening at home as much as his teacher says they happen at school.

I was so upset at the meeting I didn't even say half of the things I wanted to say. I felt like I was going to cry every time I had to speak.

Sunday, January 20, 2008

Thank you

Thank you all for your comments/advice. I appreciate it very much and feel better knowing that I ask the right questions.
Still not 100% sure on the SMD and what it stands for. It could be, Severely Multiply Disabled or Severely Mentally Disabled.

Saturday, January 19, 2008

Need Advice Before Meeting On Wednesday..

We have been having some issues with K.C.'s current Autism Program at school. I've kept quiet about K.C.'s school days these days. His teacher phoned me on Friday so that we can set up a meeting at the district office. I requested a "mediator" be at the meeting as well.

K.C.'s teacher feels that his current program "isn't a good fit" and "would benefit greatly being placed in a new program." She says she has K.C.'s best interest at heart.

The new program is called a SMD Program. I have not a clue as to what those letters stand for, I tried googling them but STILL haven't been able to figure out what SMD means. I see SMD but that's about it. I need help before going to this meeting, the phone call I received on Friday was a late call so I haven't been able to ask more questions because it's the weekend.

Anyone heard of this program? I did ask his teacher if children with Autism were in the program (just to be certain) and she said, "absolutely."

I need advice.

Thanks.

Tuesday, January 15, 2008

I have heard it all....



We have a disabled placard for our car. I hang it from our rear view mirror. We have had it for over a year now, we use it only when we have K.C. in the car with us. It's for his safety, has helped us tremendously when he's in extreme headbanging meltdown mode to get him to the car quicker. When we first decided to get that placard I had to really think on it for over a month. Seriously, I felt very guilty knowing that K.C. didn't have a physical disability and that we would be taking a spot away from someone who did have a physical disability.

I mentioned this to my Mom (who also has a placard for my brother) and she came by our house the next day. She had just come from the DMV with the form that needed to be completed by the Doctor for the placard. Our next visit I took the form, the Pediatrician filled it out and I took it to DMV. We got our placard.

My Mom said we need the placard. She reminded me of K.C.'s seizures. She said what if we needed to get out of the store quickly because he might have a seizure? We have learned that when K.C. is very quiet and very spacey a seizure isn't far away.

We went to the store yesterday to pick up a prescription, I had both boys with me. As I parked, I noticed a car pull into the spot next to us, in the disabled spot. Big Brother got out of the car first and I walked around to unfasten K.C. As we all walked together to enter the store I heard a mans voice say, "you folks aren't handicapped! Get out of that spot!" I turned and noticed that the person who parked next to us must have actually waited for us to exit to see if we were "handicapped." I stopped with the boys and said, "sir, my son is disabled, we have a placard hanging in our car." I pointed toward the rear view mirror. I looked at Big Brothers face and he looked furious, I knew if we didn't hurry into the store he was going to open his mouth and he wasn't going to say something nice. The whole time K.C. stood there like a good little boy just watching the parking lot. I noticed people started staring a bit at the old man confronting us. The old man said this, "where's his wheelchair!" Then "the mouth" I sometimes call him said, "you dummy, disabled doesn't always mean your legs!" I squeezed Big Brothers hand to let him know to shut it. I started to apologize to the old man for Big Brothers remark (I felt badly because this man was old, very old and there was know way I was going to disrespect him) then, I hear a roarous laugh coming from the old man complete with coughing (Big Brother said, "oh my God Mommy he's gonna die.") I started laughing, I laughed so hard I almost peed my pants. We just kept walking into the store and left the old man there to laugh. I think he was laughing at either being called a "dummy" or he realized how ignorant he was and for realizing a 7 year old was right.

I had a long talk with Big Brother about respecting his elders and have told him numerous times "when the adults are talking he is being quiet." Well sometimes they don't listen, but I can honestly say I was glad he did speak up. Maybe we all learned something about the word "disabled" and what it means to different people.

Saturday, January 12, 2008

Love from K.C.

(K.C. has been twisting his little fingers in all kinds of positions these days, looks kinda painful but he's happy in this picture)

There has been a very icky brown ring around the city this week. K.C. has had Asthma problems all week and we have been back and forth to the doctors office twice this week. The first time we went K.C. couldn't take more than 10 steps without wheezing and coughing up a storm. The doctor listened to his lungs and said she heard crackling and wheezing. She gave him a shot of Solumedrol (steroid) to help him breath. We have been using the nebulizer at home but K.C. is terrified of the noise it makes. If only it didn't make that loud noise! Big Brother and I have been setting the little machine up when K.C. falls asleep. We set it on the floor and cover the nebulizer with a heavy quilt to hide the sound. You can still hear it but not nearly as much if it were left uncovered. We hold the mask as close to his nose/mouth as we can, so far it is working and I am very relieved. Tonight he has started to feel better, finally. It's nice to see his smiling face again. He knew he didn't feel well because he would walk as little as possible. He has been on the couch most the week.

I am amazed at Big Brother. This little boy does so much on his own I feel badly sometimes. He asked for an alarm clock and actually gets up in the morning himself, gets his uniform on and makes a bowl of cereal or oranges for breakfast. I watched him this morning and sat with him as he ate his cereal. He said, "mom you can go back to sleep until it's time for me to go." I nearly lost it. I wanted to cry. I felt horrible that my 7 year old has become so independent because he has a brother with Autism. I just feel like I am not giving him nearly as much attention as I do K.C. I admit, K.C. takes up alot of my time and Big Brother always winds up helping me / or doing things for himself. It shouldn't be this way I keep telling myself. I talked to Big Brother about it during breakfast and he said he was worried that I wasn't getting any sleep because K.C. has been sick this week. He then said, "it's o.k. Mom, I'm not Autistic I can help myself." I didn't hear any resentment in his voice at all but still I feel awful. Some days I feel like Big Brother is missing out on typical childhood things because he has a brother with Autism. He's had to grow up quickly. Has anyone experienced what I am feeling? I would love to hear from you :)

Big Brother loves K.C. dearly and I know that K.C. loves Big Brother. You should have seen Big Brothers face tonight. Both boys took a bath together, Big Brother always tries to get him to play in the bubbles but K.C. always turns away from him so most of the bath time is spent with Big Brother looking at K.C.'s back. Big Brother makes a fake beard with the bubbles and wears it on his chin trying to get K.C. to laugh. As I wrapped K.C. up in a towel to get him dressed, Big Brother is always getting dressed right beside us as well. Tonight as Big Brother finished getting dressed ahead of us he sat on the floor and we talked as I dressed K.C. Then out of the blue, K.C. leans over and touches the top of Big Brother's head. He's not looking at Big Brother but he's just touching the top of his head very lightly, I swear it looked like he was trying to show him affection! I seen it, I really did. Big Brother didn't move an inch. You should have seen the smile on his face! K.C. giggled a little bit then took his hand away. Big Brother said, "did you see him, he loves me!" He was thrilled! It was like he had been given the best gift a kid could possibly get. I have never seen Big Brother so thrilled in my life. He sure felt so proud and I hugged K.C. and said, "you love Brother." That touch on the top of Big Brother's head helped me so much today. I felt so good for Big Brother, it was like all his hard work with K.C. paid off today, he was acknowledged by K.C. and even shown love. Today was incredible.