Kindergarten here we come

 It has been a couple of weeks since my last post because we have been pretty busy. I also was wanted my next post to be about somec I wanted to be 100% positive about before I wrote about it.
    Cullen is getting ready to graduate from preschool on June 4th and it is really very bittersweet for me. Cullen is my baby and it makes me kind of sad that I will never have a pre-schooler again. I also have grown attached to his school and the wonderful woman who work there. I have been involved at the school since Cody was three they have been with me through so much and I cannot believe my time with them is over.
      I also had this mantra that I kept telling myself over the years whenever it got hard, that soon I would have a third grader, a second grader and a kindergartener and it would be so much easier. The thing is that it is not easier, it has gotten harder and I find myself making decisions that I never thought I would have to make.
     My hardest decision was to place Cullen in the exceptional children's program at BrevardElementry instead of traditional kindergarten at his home school of Rosman. I did not take the decision lightly I began muling it over in November and just made my final decision. There were three options I was debating.
1) Keep him out for a year and see if any developments are made between ages 5-6 before enrolling him. Cullen is a young kindergartener he will have just turned 5 three days before kindergarten begins. But there were a couple flaws with that plan, one being that at his school they would not let him stay an extra year which leads to the second that as much as I would love it I am not a stay at home mom and it would be to hard with my husbands schedule to have him stay up all night and then watch Cullen all day.
2)Enroll him at his home school of Rosman Elementary in a traditional kindergarten class and ride it out and hope for the best. There were several pros with that option, I live extremely close to the school and if he were to have a bad day it would be easy for my husband or me to go get him. I am familiar with the staff at Rosman and have been extremely pleased with the way they have treated my other two boys. But the con's outnumbered the pro's. Having gone through the kindergarten gauntlet fairly recently I was aware of just how much is expected of these little guys. Would Cullen be comfortable sitting at a desk all day? Would be able to follow directions and do everything that is expected if him, would it but a strain on the teachers and the class to have him causing frequent disruptions? In the end I decided that trying to enroll him at Rosman would be selfish on my part because while it would be easier on me it would be much harder on him. Which leaves the third option of.
3) Enroll him at Brevard Elementary which is the only school in the county that has a exceptional children's classroom. I had several reservations about doing it. Part was so many negative connotations about the concept. When I was in school it was called Cross Catagorial, and the room was just a hodgepodge of kids who did not fit in the normal classroom setting. Some had behavioral issues, some were deaf or blind, some had downs syndrome. It semed lime al the mids were just stuffed in one room to mill around aimlesly. I remember the room being small but appointed wirh the kind of toys you saw in a preschool room. Then I toured the class at Brevard and all my reservations were lifted.
    The class was very inclusive, they had the space of about three classrooms in one. There were only about seven kids and four adults so each child got plenty of one on one attention. There was a wonderful room called the sensory room that was equipped with a swing, a trampoline a little foam circle filled with blankets and a light up board on the wall that when the lights were turned of in the room the board twinkled like stars.
I took Cullen to visit the room and he loved it, and I knew that this was the best place for him. I want him to be were he is safe and comfortable. I do not think he would be comfortable in any other setting. In this room they will work with him to achieve his goals but also give him the space he needs.
   My decision being made and him being enrolled I am still grappling with it. Just the other day someone was asking me how old he was and when I said almost five they were shocked
 "You mean he is going to kindergarten this year?"
"Yes"
"Not normal kindergarten though right?"
"At Brevard in the EC room."
"Oh ok that makes sense."
 It tears me up that it is not viewed as normal kindergarten, that he still may face ridicule. But I am still happy with my decision, the most important thing is his happiness and I think this class will be a very positive experience for him.

Should the world adjust to Cullen or us to the world?: Dealing with Meanies

   Today at the park something happen that happens a lot to us and I am never sure of how to deal with. We were playing when another family arrived not anyone we had seen before or who knew us. My two older boys started playing with the two new boys who had just arrived and Cullen continued to play by himself. Eventually Cullen got curious and made his way over to the new comers. To the outside viewer he would seem like any other shy child unable to make the first move for play. He played beside them quietly on the and tried to climb the ladder like the older boys, that's is when the new mom offered her assistance to him. Their exchange reminded me of Briar rabbit and the tarbaby.
Mom: Would you like help?
Cullen:......
Mom: I could lift you up there
Cullen: .....
Mom:So you want to slide too?
    A note of frustration was starting to enter her voice, as he was trying to help him why would he not answer her.  I was making my way over to help but what do I say to he other mom? "Oh don't bother he does not talk?" "Oh sorry he is autistic and is unlikely to answer you?"
    This is a common conundrum I have, how do you explain to others why he is acting the way he is? The lady at the park was not being mean but she was clearly frustated that he was not acting they way she thought he should be. If he were an only child it is sad to say but I probably would not rake him to the sort of places and events that trigger this. I find them uncomfortable he finds them unbearable we could stay at home and play. But I have two other boys at home who greatly enjoy this sort of social events.
   Two of the hardest experiences in my book were the Twilight festival carriage ride and The complimentary breakfast fiasco.
   Here is a little background to the Twiligh festival (no it is not a festval for sparkly vampires but given that I live in Transyvania county it would not suprise me).I live in a small town that hosts four anual festivals on the towns main street. The White Squirrel festival in May, the fourth of July festival, the Halloween festival, and The Twilight Tour.
     My favorite being the Christmas Twilight festival, it is held at night and there is a bunch of Christmas themed activities. Carolers, Santa Claus, ice skating, (to hot in the south for ice so it is really a snap together roller skate rink) it is like something out of a movie it is wonderful. By far the biggest draw are the horse drawn carriage rides, to the lovely and historic Silvermont mansion .With the street lit by paper luminaries you feel like you are living in a Christmas card. The boys were so excited to ride in the carriage , but the lines were ridiculously long. Like a almost hour wait for a four minute carriage ride. I suggested we just go on home but was met with tears from the older boys they had their little hearts set on riding in a one horse open sleigh. So I relented and agreed to wait . Luckily we had spotted the event quickly and were near the beginning of an extremely long and cruvy line. The people in front of us were together and from out of town they were talking about the long drive from where the lived just to attend the festival. They were the sort of upper class yuppie moms you see power walking together Starbucks cups in hand. As we reached the front of the line there was a table laden with mini candy canes. I do not know if I have mentioned this before but Cullen turns into the Tasmanian devil around candy. He started grabbing handfuls and squealing gleefully the prim lady manning the table informed me tartly that there was only one candy cane per child. I wrestled the candy out of his hands and picked him up to prevent him from getting more. That is when he started laughing and squealing loudly. The moms in front of us and between them six of the most well behaved little girls I ever seen. They stood stock still as they waited patiently for there turn. Cullen had now begun to climb me like a tower and then dangle over my shoulder when he reached the top and kick. The thing was he was not being bad, he was happy, happy to be out at night, happy, to have seen Santa, happy to be we with his brothers waiting for the horse. So to the outsider it may seem like he was being unruly and I should take him home I did not because he was having a good time. If he could talk he would have been saying "Mommy when is the horsey coming back" " Mommy can I have another candy cane?" But instead he was squealing happily. As it neared the thirty minute mark of waiting behind the yuppie mommies they were starting to get annoyed. The one mom rubbed her eyes impatiently "I am so glad we drove  Tennessee so I could get a migraine." and then she threw a look at me that clearly said me and my child were the reason for her headache. I was mortified I felt my cheeks flaming but what could I do? What could I say to explain the situation I wanted to make her feel bad as she made me feel.
    The other instance of discrimination is the great hotel breakfast debacle. I live about three hours away from my best friends and biggest supporter s my mom and sister. Sometimes they come visit me and stay in the Hampton hotel in town. In the morning I go visit them at the hotel and we have breakfast there. It is a favorite time for all of us and the boys look forward to it so much. The last time they stayed and we met them there was the last time they ever stayed at that hotel again. We had eaten our breakfast and my sister went to get ready my mom had to use the restroom and I stayed at our table with the boys and their cousins.
      We were all having a great time they all get along so well they were laughing and talking. Cullen again was squealing I imagine that he was trying to say "I like eating breakfast here!" "I am so happy my cousins are here" " What else are we going to do today?" Again he was not being bad if his was causing a scene or throwing a tantrum I would have taken him outside. He was just laughing and having a fun time with his cousins. One of the breakfast attendants came over to our table. " I am sorry but he is being to loud you he is disturbing the other guests." I was stunned "He is autistic, he does not talk this is his way being happy." "I am sorry but maybe you could take him outside?" Again embarrassed I trucked all five kids outside in the freezing as sleet so we would not be a bother.
     So my question is how do I explain my beautiful little boy to the outside world? Should I have to? I do not know what people expect from a special needs child. That they should have to look different to be treated with respect?

 

Cocoa Pebbles and candy for Cullen: Handling a picky eater

  When I was little one of my favorite books was Bread and Jam for Frances. It was about a little badger named Frances who was such a picky eater all she ate was bread and jam. My favorite part of the book was the vivid descriptions of food. I would stare at the page with Frances carefully laid lunch in the end and wonder how tasty a lobster salad sandwich would be. I also just could not understand Frances with all the tasty things around her why would she choose to just eat bread and jam?
     Now I am dealing with a picky eater of my own, Cullen is loathe to try new things, certain textures really bother him and there is a very short lust of things he likes. The other day I made homemade macaroni and cheese. It was delicious if I do say so myself but Cullen would not touch it. He stared at his plate with a glum expression. This was our argument word for word.
Me: It is yummy!
Him: No yummy
Me: just take a bite
Him: *hummming*
Me: You are hungry, please eat
Him: cocoa pebbles?
Me: here just take a bite * shoves macaroni in his mouth*
Him: *gags violently and spits macaroni out*
  The thing is that he is always hungry he sneaks into the kitchen constantly and sneaks snacks out. Our sits at the table and waits to be fed or brings me a bowl so I will but a snack in it. But all he wants to eat is cereal or snacks. The last couple meals I have made go untouched by him.
    He does like chicken nuggets, hamburgers, and pizza but a healthy diet does not consist of those foods. There are very few veggies that he will even consider. Even then I have to gussy them up pretty heavily with cheese or sauce to make them paltable. He likes fruit, apples the most and strawberries. Even then his fruit consumption is patchy, sometimes discovering a full bowl of fruit in the kitchen he will take a bite out of each apple and then carefully place them each back in the bowl. Last summer we had a vegetable garden but many did not make it past the early fruit stage because young veggies look like apples at first and he would sneak bites of the veggies on the vine hoping for apple and being greatly dissapointed with squash and pumpkin.
    When we discover a new food he likes I try to provide it for him as much as possible. It scares me sometimes how little he eats. Tonight he acted like he was starved and I sat him down to a plate of spaghetti and garlic bread a sometimes favorite but tonight he ate maybe three bites of bread and then wandered around the kitchen aimlessly opening cabinets and whining. The photo was is of a rare night where I gave him something new to eat and he ate it and liked it (you can also see all the open cabinets, we call him the cullygeist)
   

He of little sleep

    Last was rough for us, Cullen has never been huge on sleep but last night he was flat out refusing. I did not get home until 9:00 from work. He was already in bed but when my husband left for work my oldest Colton woke up saying he felt sick so I let him come out of his room. I put on a movie for him and that must have woke Cullen up. So I went to get him out of bed figuring he just wanted some mommy time. But when he got out he was kicking and screaming and saying no! So I put him back to bed and told Colton to go to my room he could sleep in there. I brought Cullen a water, found his duck (he adores ducks) and sang him his song. That usually works but last night nothing would calm him down . My sister-in-law got him a weighted blanket and sometimes that works in calming him but he threw that, which is not easy that thing is heavy.
   

  The sleep problems for us started when he was three. As a baby he slept fairly normal, sleeping through the night at about three months and continuing that pattern until three.
    It started with him being hard to settle down, I always sing him a little song or read him a story but he started wanted more and more. I would lay with him until his breathing slowed and then try to sneak out but he would pop up like a Jack in the Box the moment I reached the door. So I talked to my mom (if I ever have a problem she is who I go to first ,mama always knows best), talked to my husband and read all the mom stuff and the general consensus was let him cry it out.
   Only that did not go over to well, oh he cried and kicked and screamed, until I feared for his safety inside the room. He would kick the door so hard it would shake the house slam his fists on the windows so that I was afraid he would shatter them. So then I thought I will just put him in the bed with me, but he did not like that either. He would get up and wander around the room banging on the door and crying. So then I made him a little playlist on my iPod and would let him fall asleep with it. I put all the songs I would sing to him on it, Beautiful Boy by John Lennon, When you say Nothing at all, by Allison Krauss. The playlist became my way of communicating with him. Even though we can not talk to each other I could tell him how I felt through song.
   The iPod worked for several months until a flaw appeared in the plan. While the music lulled him to sleep it did not keep him asleep. The first instance of him getting out of bed occurred shortly after moving to our new house. My husband woke me up saying our bedroom door had opened and he thought maybe on of the boys was out of bed, After a complete examination I could find no evidence of boys out of bed. So for a few weeks I was convinced my house was haunted (I really need to cut back on the ghost hunting shows). Then it happened again but this time he ran into his brothers room instead of his own by mistake and there was quite a scene because now his older brother thought it was a ghost and it took a long time to get everyone settled and back into the correct bed. So with him getting up in the middle of the night and roaming the house I was more scared than if it had been a ghost. What if he got out of the house somehow? What if he got ahold of something dangerous? So my husband the handyman turned his door knob around so we could lock him in at night.
   So instead of getting up and wandering around he would now kick his doors with thunderous noise. I tried everything to get him to settle back down, bribe him with cookies and juice. But most nights would end up with me watching Mickey Mouse Clubhouse with him at 4:00 in the morning. So I consulted the books again and tried the vitamin supplement melatonin. Some people use it with great success but I saw no change in his sleep.
   After several weeks feeling about as well rested as I did with a newborn something had to give. I had heard of parents giving their children medicine at night to put them to sleep and I had always scoffed at it. Well never judge anyone because you never know when you will be in there shoes. I called my pediatrician and set up an appointment to discuss it.
   I figured the worst she could say is that there is no such thing as baby ambien and just suggest the vitamin we were already using unsuccessfully. God love her she took one look at the bags under my eyes and the pleading tone in my voice and gave me mercy. She prescribed him a pill called clonidine, and no it is not a baby ambien. It is used as a blood pressure medication in most people but in children it works different. It is often prescribed for children with sleeping disorders and ADD.
    We have used the medicine for a year now and it as helped him greatly. It helps him get to sleep with out knocking him out, he also is able to stay asleep. Some nights like last night he still wakes up around midnight but usually he can fall asleep again with out a problem. He still likes for me to sing his favostand
g, it is a little song that played at the end if The Care Bears Movie II , have sang it to all three of my boys but it is Cullen and mine special song.
Hello old friend
It,s good to be with you
Time is standing still
Our love shines true and bright
It always will

My wishing star
Has guided all you do
My empty heart you fill
We still feel forever young

Looking back, we're just the same
As we were when we began

This love will keep protecting us
Just reach for me and I will take your hand

When we're apart
Just close your eyes
And you'll see me waiting there

You can always count on me
I will always care

My special friend
Inside my heart you'll stay
I'll be with you until
The sun shines through the night
It never will

My little star
You'll never fade away
The hands of time are still
And we'll be forever young

No Rinse shampoo: A bath time savior!

    I got alot of support and suggestions after my bath time post. I am happy to report on of the suggestions as made my life much easier. I have started using a dry shampoo on his hair which he does not mind at all and it leaves his hair clean and fresh smelling. I use the dry shampoo every other day and use baby wipes to clean up and freshen up his body. I bath him in the bath once a week. This arrangement has made both of us much happier.
      I was skeptical of the Dry shampoo at first I was concerned that it would 1) Have an "old person" smell as I was told it was often used for bed bound people. 2) That it would be to messy, and most of it would end up on his clothes or on the floor than on his hair.3) That it would make his hair have a greasy texture. I was proven wrong on all three accounts.
   It smells very fresh, like baby powder it goes on as a liquid but it us not too runny. Once you apply it to the hair it lathers up just like a normal shampoo and it only takes a little to get a good lather going on his head. Once it is all lathered on you just have to gently rub it off with a towel. I do not even have to undress him and I can do it while he his happily watching TV or playing play-dohs (a Cullen favorite).
   He likes it so much he brought the bottle to me today and asked "I wash?" When we were done washing his hair he brought me his toothbrush and asked "brush?" So today he is very clean and handsome. Which is very good as we are going to go tour the Exceptional Children classroom at Brevard Elementary where we will be enrolling him in kindergarten next year.

I eat cereal: A sentence triumph!

  It was a very exciting this morning Cullen said a complete sentance this morning when asked "What would you like for breakfast." he responded "I eat cereal." It came out " I EET se-al" but I was able to understand what he meant.  I am hoping with the positive response se he received when he said this that he continues to use it.
   That is the thing with Cullen and his speech he may say something once and then never say it again. I did not know he even knew his brothers names until last year when we were at an awards ceremony for them and he saw them in the crowd and started screaming "Colt!" "Coewy!" Yet he has never said it again.
   Cullen also uses one word to meaning several things, or he says two words so similar it his hard to discern what he is asking for. When he says "shoes" and "juice" they sound very similar, "shuey" and "juey". So he may be asking for his shoes meaning he would either like to go play outside or go to the store, but I hear juice thinking he is thirsty and get him a drink and he ends up very frustrated.
   In the picture he is riding his " truck" it took me and my husband forever to figure out what he wanted.  We would be outside and he would yell "truck!"and I thought he wanted to go in the car. So I told him no we are not going anywhere today, and he shook his head and screamed " truck!" So we got him out his big tonka dump truck but he kept handing back go me and shaking his head. So I went in the storage unit to retrieve some of his other trucks and he followed me in and hopped on the ATV he got for Christmas and clapped his hands and squaled happily "truck!"
     The hand clapping is a new development, he claps when he is either very happy or very frustrated. The first time he did he he was very excited that we were at the park so he started clapping his hands. Then the next time he did he he kept handing me a bowl and saying bowl! But when I but cereal in the bowl he clapped his hands and cried and dumped the bowl out. Then when I sat back down he climbed into the cupboard got the bowl back out and handed if back to me clapping his hands and crying. I never did figure out that day what it was that he wanted or expected of me. So we take it day by day and celebrate when he makes communication strides and do our best to understand him the rest of the time.

Riding the Short Bus: Learning to cope with the words of others

   This a picture of the bus that comes and gets Cullen in the morning and brings Cullen to school. The bus is a godsend an absolute blessing, before we would have to drive to his school in the morning ( a twenty minute drive) and back then drive back at noon. All the back and forth driving was killing us in gas costs and some days he would not be able to go because we had no way to get him there. The bus is equipped with straps so he cannot get up and wander around the bus also has an assistant on board to help with the kids. The bus is small ,a large bus would overwhelm him with all the noise and kids. So guess in the simplest of terms you could say in fact that Cullen rides the short bus.
   Of course this term has been taken to mean something derogatory. Someone who is not smart, someone who cannot catch on as quick. Of course I heard this term before Cullen but it did not truly offend me until now. I always new it was not nice but the other day I heard someone say "he is riding the short bus if you know what I mean." And I felt my blood run cold.  I wanted so bad to say something about choosing ones words, about how offensive that was. Instead I kept my mouth shut I cannot speak up every time someone does something I find offensive towards him. Every time someone gives him a mean look in the store, every time someone's uses the word "retarded."     But I can not remain silent anymore, we as a people need to choose our words more carefully. We need to stop being so negative instead of using words to tear people down we need to be building people up. I am as much at fault as anyone, I have used words that I regret now. As a teenager I used the word "gay" as a catch all word for everything I did not like. I regret my words now and worry over the people I may have offended with my careless words.
   I have heard people complain about how politically correct we are getting. How freedom of speech is not being honored, I am not urging people to censor themselves. I am urging people to be kind, you never know what other peoples circumstances are. You can never know how the words you choose will affect other people so be kind always.