We have been very very busy this week. A lot of end of the year things happening with Kailyn. She was in the Gorham Memorial Day parade on Monday representing Rec Tee ball. She was thrilled to do this. Her first parade ever! Daddy walked with her. It was a long walk and after she passed us (3\4 of the way through the parade) she bowed out at Cumberland farms. She got Seth to buy her a water and candy bar for her efforts. ;) It was a LONG walk on a warm day for a 6 year old and they were at the end of the parade procession. Kailyn said "I think watching a parade is A LOT easier than being in one." After the parade we went to Aunt Jayme's and Uncle Matt's for a barbeque. We got stuck in traffic on the way down because an RV caught on fire and it started a fire in the woods. It only delayed us for an hour and we had fun at the barbeque with all the cousins. The next day Kailyn had her dress rehearsal for her dance recital on Saturday. I enlisted Grammie to help with this so she brought her and took some pictures. Then today Kailyn had her Musical at Narragansett School. I had asked her a few questions about it before and got no response. I wanted her to sing a few songs and she would not do that either. The Musical was wonderful and Seth and I were shocked to not only see Kailyn sing, but she had a solo. Last year in preschool she mainly would just stand there in shock that she was in front of all these people. Well, this year, not only did she sing, but she did incredible. Below is a clip of her. We are very proud parents!!! :)
AND JUST BECAUSE HE IS TOO SWEET!! :) This was taken before the parade
These are some things that I remember Kailyn said or did when she was younger that were either cute or funny. I will come back and Edit as they come to mind. I just don't want to forget :)
-She called adults "Redults" -Tights were called sleeves (as in sleeves for your legs) -If something died it "Dived and went to Kevin" (around age 2 1/2 to 4) -She called her Grandpa's "Bonker" -She had imaginary friends named Hungry bird and Little mouse. Later Sally and Brian showed up. (age 2 1/2-4 1/2) -Her first sentence was "No No Dada" at age 9 months (my sister and brother in law are witnesses)
That the telephone has more germs than the toilet? This is what Kailyn learned yesterday. She told me when I was laying with her doing the recap of the days events. I said, "That is gross, Where did you learn that?" She replies,"I heard it on TV" I told her that we should wash the phone right away tomorrow, to which she replied "We can't, it will get ruined in the water" She does not miss a beat. :)
We went on a field trip yesterday with Sam's class. There are 4 other boys in his class besides him. The field trip was to the farmers market and the park (playground). I talked about it almost the whole way there. I tried to explain how we were going on a field trip. He said he wanted to go on a trip with Grammie and Grandpa. Grammie and Grandpa went away on a trip this week. Sam thinks they went to camp and wants to go too. So, if there was any kind of trip he was going on the kind that led to camp. He was not getting what the words "field trip" meant so I let it go until after we got there. They had a fabulous time at the market. Went, "up up up up up up up" in the elevator as Sam said, got to look at a lot of fresh flowers and experienced their first political rally (something about taxation in the state). They had a blast playing on the playground. I got to see how Sam and his friend play. Sam basically follows him around. So fast forward to last night. Every night when the kids get into bed I lay down with them and we talk about the day. For over a year I have been telling Sam what he did that day or prompting him on what to say that he did. He has never initiated on his own a recap of the days events until last night. He said out of the blue to me "Today I went on trip to Market a Playground, me saw berries a bananas a big kids" First of all, look at that sentence! Its huge! Second he did this umprompted and third after weeks of explaining what Today and Tomorrow mean he said it correctly. Another milestone for Sam :)
This is what Samuel learned today. It was a fabulous $500 lesson (the price of our deductible) that was taught early this morning. I was in my usual morning furry of trying to get things done to start the day. This was all before Nanie got there to watch the kids (while Sam and I went on a field trip). The three other kids were in the living room playing and I let Sam go out to the garage to ride his trike on Daddy's side that was empty. Something he does on his own frequently. I check in every few minutes to make sure he is still on track. Kyleigh decided to take a walk out there so I followed her because she is not allowed out there alone. As I look out the door Sam is scrubbing the front of my car (Yes, my new 2008 Sienna) with a wet rock and Kyleigh was picking up a rock about to do the same. I said to him "stop!, what are you doing??". He replies, "I clean the car a rock, I helpin" (with a proud look on his face) I told him he could not do that and that he broke the car now. (showed him the scratches) He looked at me sadly with his puppy dog eyes. He was crushed because he thought he was doing something to help and instead broke something. We talked about how we do not clean cars with rocks a lot today. sigh On a bright note Uncle Corey says that some Bam product he has seen on an infomercial works on scratches on cars. We shall see. LOL
Today was Kyleigh's 2nd birthday party. Her official 2nd birthday is tomorrow. The kids had a blast as they usually do at parties. It was a Wow Wow Wubbzy themed party. Kyleigh's favorite show on the television right now. If she wants to watch something on tv it 99% of the time is "WOW WOW" as she calls it. We now have it DVR'd because it is usually not on when she wants it or when we have time. Kailyn was given the duty of coming up with the games for the party by her Uncle Corey. A challenge she enthusiastically took on. She made a Wow Wow Wubbzy treasure hunt, Pin the tail on WOW WOW and find the WOW WOW game. You can't buy this stuff in the store so she made all the games by hand. We only had time for two of the games, but she was thrilled to be the party planner. Below shows the WoW WOW Wubbzy treasure hunt. Kailyn made a map they had to follow and colored a box with WOW WOW on it with the candy treasure at the end.
For quite some time Sam has been saying to me when we are in the car. "Look, it a icicle" Being clueless that I am to what he is saying sometimes, I respond, "No, its too hot for icicles, they went bye bye with the snow." He has looked at me with a perplexed expression on his face when I say this. I felt kind of silly today. We were stopped right next to a motorcycle and Sam said, "Look, it a icicle". "OH, I say, that's a motorcycle!" I look at him in the rear view mirror and he says proudly and relieved. "Yup, a icicle" Sam and I have been working with Kyleigh on how to talk like a trucker too. Today I went through the drive-thru to get my caffeine fix. I finish talking to the guy by saying, "No, that's it". Kyleigh the parrot that she is says "No S%it" at least 20 times after that, including while I pick up my caffeine. Then Sam Says, "Oh my gosh", one of his favorite saying he picked up at school. Kyleigh quickly parrots him saying "Oh my G#d" over and over again. Yup, she's on her way to being the cutest 2 year old trucker around. ;)
We went to York today. This trip served two purposes. The most important being that it is Nanie's (my mothers) birthday and secondarily I needed to get blood drawn for the Doctor. I tried to plan it so that we could get the most bang for our buck since gas is so expensive these days. Kailyn was very excited as she usually is for a birthday. She made her card by hand since there are no Nanie cards at the store. She also insisted that we either make or get a cake for Nanie. No birthday is complete (or real) if cake and the singing of Happy Birthday is involved. It was 7pm last night when she declared this and at that point I was in no shape to bake, so store bought it was.
It took extra planning on my part to make this trip successful. First Samuel had to be to school by 9am as usual. Kailyn had to be to the bus by 12:10pm. Nanie's is an hour away. So if I dropped Sam off at 9 and got on the road by 9:15 we would be at Nanies by 10:15 and have to leave at 10:50am. Not enough time to eat cake, open cards and get my blood drawn too. I asked Jock and Susan (Grandpa and Grammie) if they could take Sam at 8am and then take him to school and they agreed, so we hit the road by 8:15 am which gave us a good one hour and 40 minutes with Nanie. But FIRST, I had to feed Graham his cereal early (he just started eating cereal at my house this week), so I had Corey bring the kids early, which meant I had to get up early too.
We got to Nanies around 9:10 just as she was calling to see when we would be there. We gave her the cards, some flowers and Sang Happy Birthday. The kids were thrilled to get cake at 9:30 in the morning. What a treat!! I went to the Lab.(kidless) Yes, I left them with Nanie for her birthday! LOL Got my blood drawn and then went back to Nanie's to pack everyone up so that we could get Kailyn to the bus for 12:10. The two things I did not think through were lunch and Kailyn's snack for school. On the way back north we went through the McDonald's drive through to feed Kailyn and I got 50 cents in change so Kailyn could get a popcorn snack at school. The kids were thrilled to see Nanie as they usually are and Kyleigh actually said Bye Nanie all the way until the Wells exit until she fell asleep. She even said, "Nanie I love you", which is rare for her. You usually have to sneak the I love you out of her. We made the bus with 5 minutes to spare. Both babies started to cry when the car stopped so we got to listen to them "sing" while we waited. Kailyn happily got on to the bus and at that point our Birthday morning was officially done.
HAPPY BIRTHDAY NANIE!! We were very happy to see you and hope you did not have to work too long at cleaning up the destruction we left in our path. :)
Here is a picture from last years Mother's Day, Nanie's Birthday, Kailyn's birthday party.
We went to the Robie family camp on China lake today. This trip was for a Birthday and Mothers Day celebration in honor of the kids Great Nana (Seth's Nana). We all had a wonderful day. Sam remembered camp from last year. He could not talk last year, yet he pointed towards the camp and said "I go dwimming". I told him it was too cold and he said, "I wear my jacket". :) The kids played with their big cousin Leon (11 years old) for 9 hours straight with a few breaks to eat and help Great Nana unwrap her presents. They absolutley adore Leon, who is almost too good to them. He did anything and everything that they wanted him to do. They played on the hammock, hide and seek, morphed their faces on Leons computer and had numerous piggy back rides. Sam said goodbye to all of his Great Aunts and Uncles and his Grandmother was just tickled that he did this. (he is typically very shy with anyone that is not in his every day life) The first thing that Sam said when he woke up this morning was "I go camp today". I told him we would go back soon and that Grammie and Grandpa were coming home and he said, "No, I go camp a Grampa". It took a while to convince him that no matter how much he asked, cried and whined we were not going today. Thank goodness Kailyn understands that we will go back in July to stay overnight. Above are a couple of pictures of the kids at Camp last fourth of July. The first is of them with Leon and the second is of Great Nana looking on while Leon, Kailyn and Samuel play.
My family gave me some beautiful cards and I enjoyed sleeping in until noon. I only had a few interruptions. My day would not be normal (or complete) if I did not have at least one child screaming and crying at me bedside. While I slept, Seth and the kids ;) worked on cleaning out the garage. Kailyn (currently 6) made me a beautiful poem that she wrote and made up all on her own. It read like this:
Mome, I love you wen yor hape I love you wen yor sad I love you wen yor mad But Mome I love you the most wen Im at skol
We may order something out for dinner, but I have not decided what that something may be yet. All I cared about for today was relaxation and I got that.
Sam was diagnosed with Autism on 9/06/07. Below is a part of the list of concerns that Seth and I went to the developmental pediatrician about on that day. (IT was much bigger) What is not mentioned in the list is that Samuel scored in the 1% for receptive language and <1%expressive. Meaning 99% of 3 year olds could speak and understand language better than Sam. He was VERY behind using a few one word utterances and a few scripted sentences.
Concerns for Samuel: 9/06/07
-Limited imaginative play
-Can’t do imaginary play with peers. Only parallel play.
-Has no concept of what a friend is even though we have multiple play dates with the same children who are his peers
-Does not respond to his name
-Lines anything and everything up, water bottles, cars, pillows, books, blocks, kitchen utensils. You name it he lines it. Prefers lining over play.
-Eye contact: Sometimes appropriate other times it is not. .
-When he gets scared or upset ends up in what we call a catatonic state where he does not move and won't look at what is going on.
-Looks to the side and hangs his head when he is walking sometimes.
-Can't explain social events to him. He may or may not want to go to Grandpas, Aunt Katie’s, but that is the extent of his knowledge of going somewhere.
-Does not know about things that a typical almost 3 year old should: Birthdays Holiday's School Playing Sports Did not “get” fishing when we went on vacation Going to Chuck E Cheese
These are all things that we have done and do, but unless we do them on a daily basis he does not have recall or express interest in them.
-Can't sustain or hold a conversation with anyone.
-Does not know his name, age, no knowledge about himself
-Echoing phrases (echolalia)and most of the speech he has is one or two words and if it is a sentence it is usually scripted.
-Generalizes a lot of his concepts and speech. E.g.: Kyleigh can't have a toy so she must not be able to have all toys. Milk, drink, water, juice, soda, are all water. granola bar, nutrigrain bar, cracker, cookie are all cookies
-Vocal stimming-says digga digga digga digga over and over again all the time all day long. Some days are better than others. A new one is la la la la la la la la.
-finger stimming- Especially in the car, but does this with a lot of objects. Will flick fingers on things as he walks by.
-Flaps hands-especially in the car
-Toe walks sometimes
-His newest obsession is spinning in circles or running in circles. Does this until he is dizzy.
-Loves to crash into me and other people. Press his head into things for the sensory input I am assuming.
-drags his head up and down the carpet.
-Does not like to have his hands dirty and flips out until you clean them. Does not like to have his shirt even a little wet and wants to immediately change it.
Sometimes if we do something even one time he gets upset because he wants to follow that same pattern.
Difficulty with transitioning sometimes, which results in tantrums. These tantrums can lead to aggressive behavior. Hitting, kicking, and biting.
FAST forward to NOW. Sam is in an ABA preschool where he has received intensive one-on-one therapy. He receives 2 hours a week of speech therapy and graduated from OT because he is caught up in fine and gross motor skills and his sensory issues are virtually gone. We also put him on a special diet eliminating all processed foods, artificial ingredients and dyes. He takes fish oil and a dietary supplement now too. He has made huge gains since I wrote that list.
ABA helped bridge Sam from his own world and into ours. It helped him learn how to talk, to play and to see things beyond what was right in front of him. We are lucky though. A LOT of people don't get services like ABA because the therapy is expensive. There are other therapies out there that work well that people still can't get either. Such as Floor time and RDI. It is crucial to get the therapies as early as possible, yet most people can't and when they do its a fight. That is why funding for autism research and the therapies is so important. If it were not for Sam's therapy we may still be wondering if our little boy would enjoy the anticipation of a birthday or get excited about going on a fishing trip with his grandpa. Sam still has a way to go socially and communication wise, but with continued intensive therapy we have hope that he will be able to go to school without any supports and will lead a productive and happy life.
Here is a video of Sam answering questions that he learned using the ABA therapy. He is doing one of his rituals which is lining things up before bed. This is the only time of the day he usually lines now. The other parts of the day are filled with productive imaginary play he learned through ABA as well.
It was just yesterday it seems that she was getting her teeth ,but now they are starting to come out. Here she is in all her glory. Extremely excited to get her loot from the tooth fairy. Oh, and her brother in a picture too. He could not be left out!! :) The tooth came out on Thursday May 1, 2008. The tooth fairy left her gum and money.
Not quite a portrait, but a beautiful picture nonetheless. This was the day that Samuel (currently 3 years, 8 months old) was finally going to come home. He had to stay in the hospital for 7 days because of complications from birth. Sam Bam (as we lovingly call him) had his umbilical cord wrapped around his neck 3 times and his body once. This caused him to have trouble breathing when he came out via c-section so he ended up aspirating fluid and was on oxygen. I did not get to hold him for the first day and a half of his life. I finally broke down and my Mom got the nurses to let me hold him. His oxygen levels surprisingly went to normal levels when I was holding him. I can't believe how much has happened since this picture was taken and how much my kids have grown.
Since this blogging thing is becoming so popular I decided to give it a try and see if I like it. Friends and family can keep up with us and see what the day in the life of the Robies is really like. At the same time, maybe some day my kids can look back at this and see and hear about memories that they may not have otherwise had the opportunity to learn about. My screen name in the Internet world is s2k2sweet. When Kailyn was a baby I would say to her "you are too sweet" constantly. When I joined my first message board my screen name was sk2sweet (S for Seth and K for Kristen and Kailyn 2 sweet), but then Samuel came along, so I added him in with the addition of another 2. Life is two sweet is about my adventures of being a wife and mother to two wonderful children, my main job and joy in life.
