Thursday, July 10, 2014

Like a cat stuck in a tree: Why play places are a bad idea

    As soon as I saw the commercial I cringed inwardly, Mario and his cohorts racing merrily, a McDonalds sign emblazoned in the background. My older boys have been on a big video game kick, their favorite being anything to do with that little Italian plummer. The minute the commercial aired they we're nagging, "Can we go to McDonald?! Can we get a happy meal?" We make the trip to McDonalds only a couple of times a year. Usually only when the toy being offered is so alluring that even I cannot deny a trip will be inevitable. Like the Halloween buckets or in the case of today a Mario riding a go cart combining two if their greatest joys video games and hot wheels.
    McDonalds is not a treat we have often in our house for the obvious junk food related reasons of course but also a few sub-reasons. Number one: For the price you pay for three happy meals and whatever I decide to order you can easily go to the store prepare your own hamburgers and take everyone to Dollar Tree and pick out a toy that will be enjoyed for the same amount of time. Number two: The play place has become a place of dread for me. Ever since Cody at three years old got stuck inside,was to scared to go down the slide and I had to recruit a set of responsible looking nine year olds to retrieve him I have not looked at it the same way. Then finally and most importantly Number three: You never know which Cullen you are going to get. He could be happy and sweet, play happily in the play place eat all his food and leave without a fuss. Or you could get the hostile Cullen. The one who refuses to eat a bite of food and throws his toy at you and then trees himself in the playhouse and refuses to come down as he did today.
   We started out good, he played nice but when it was time for him to come out and eat he was reluctant to leave. I finally lured him out and he ate all his food and then went back to the playhouse. The play place at the McDonalds in our town is fairly unique. It looks like a giant treehouse, with the ladder part being a tree trunk and a little sitband observation area being the top of the tree. Then there is a treehouse connected to it and a curvy slide to get down again. Cullen decided to camp out in the top of the tree and would not move. When it was time to go I called for him and he would not move, then I told his brothers to retrieve him and he kicked and screamed so violently they were forced to abandon their efforts. I tried to intervene and call out all manner if tempting things to him. "Cullen get ice cream!" "No! Ice cream-ah" he responded back. "Cullen mommy buy new bubbles!" "Bubbles! I not Bubbles! Play! Stay!" "Cullen we got to go! Please!" "Go! I no! Bubbles! Ice cream! No no!" We argued back and forth for a while. I was debating climbing inside to get him but the inside if the tree was narrow and twisting and obviously not meant for an adult. I could just see the headlines: "Local Chubby woman stuck inside McDonald s play place" how embarrassing would it be to have a bunch of firemen have to extract you from a plastic tree?
  My husband however being a man of action decided he would chance being stuck in a tree like Winnie the Pooh and climbed inside and extracted a very upset Cullen. He was screaming and kicking and the whole (yet thankfully small) population if the McDonalds play place were staring at us. A mixture of confusion and pity etched on their faces.
    So I have added McDonald to the list of places I am afraid to go to with him. On the list already is the laundromat, Chuck E Cheese and any and all shops that sell expensive glass doodads.

Saturday, June 28, 2014

The Boy from Mars

   This might be controversial to say but sometimes I feel like Cullen does not live on our planet. His body might be here in the room with us but his spirit is sowing high above us in planes of existence we can only imagine. Sometimes when he speaks a sentence to me that I cannot understand I imagine he is speaking martian or some other language he has learned in his travels.
  Then sometimes he is so present that it gives me glimmers of hope. Today was one of those days were he was very I tune to his surroundings. I was making chore charts for the boys and he came over to me and asked "paper?". This is very unusual for him most of the time he just grabs what he wants and does not think to ask first. I gave him some paper and some markers and he drew a large circle and then to smaller circles inside and said " eyes" then he drew a curvy line and said "mouth" and finely three lines on the top of the circle and said "hair". I could barely contain my excitement " Very pretty Cullen a face!" then he scribbled all over it with wide curving lines before I could get it from him.  We worked together for a while in silence then he began saying some of his ABC's. He says them funny he will say "An A no A, A B no B" he does this alot . Sometimes when I put him down for bed he will go through the whole alphabet this way then start on shapes. "A square no square". I noticed though he was saying the letters of his name " a c no a c a u no a u a l no a l" I looked at his paper and he and written his whole name all by himself. At school he has worked on thus but they draw the dotted lines for him and he fills them in. This was completely unguided and in prompted which is where he does his best work.
     I gave Cullen my old IPod touch recently and he absolutely loves it. He is very good at the game angry birds and scoops. I thought he was just mashing buttons at first but then I say he was actually playing and getting pretty good at it. He also likes to play the music on it and chase his brothers around playing Katy Perry's California Girls.
   When they read me his test results and told me his IQ was on the low range it was hard to hear. But they also said there was no proper means to test him. I know he knows so much more than he shows.
Cullen's shapes

His name written with no guide

A face scribbled over
  Somewhere somehow these nuggets of information had gotten through to him. It makes me wonder how much more his getting through how much more could he show us and tell us if we could get him on our planet more often.
 

Sunday, June 22, 2014

The Call of the Wild

 Summer is now upon us and after the lengthy and extra cold winter we are all happy about it. Cullen seems to be the happiest of all of us about the turn in the weather and the opportunities to play outside.
  Cullen loves to be in nature, nothing makes him happier than to be out in the sunshine. When I take him to the river by our house he will happily sit in the water splashing and throwing rocks for as long as he is allowed. When we went to the beach I have never seen him more content than when he laid down in the sand dug his hands in and chilled.
This summer he as been taking every chance he gets to go outside, lately when he is not supposed to. In some ways he is like a cat you want them to be inside and snuggle up on the couch with you but all they want to do is roam.
  In our house there is a sliding glass door that leads to the porch and freedom. Cullen learned how to open the door and get outside last year. The door also as a deadbolt and I have to keep it locked or he will sneak outside. It would not be so bad, we have a yard that is completely fenced in but sometimes he us not happy with the parameters of our yard and tries to hop the fence for further freedom. The last couple weeks he has learned a new trick to get outside.
  Our home came equipped with a doggie door carved into the front wall. Much to small for our doggie to squeeze through but just the right size for a Cullen. It has a latching mechanism with a flap but he has figured out the latch and removes the flap and scoots outside. The first time he did it I was in a cold panic I could not find him anywhere. I was doing housework and I had deadbolted the door because he likes to go outside. His brothers were playing Lego Batman and when they play the game together a marching band made up of clowns could go through the room and they would not notice. When I put on my headphones Cullen was in his room playing with his cars. When I took them off to check on them Cullen was no where to be found. The sliding door still deadbolted, the kitchen door had not been budged as I was in there the whole time. Then I noticed the doggie door that I never pay attention too and the plastic gaurd was off and laying at Colton feet. I faced to the yard and looked all over starting to panic again til I found him in the sandy part of the yard scooping dirt into his dump truck with his shovel still in his truck jammies covered in dirt.
   I worry about him wandering away constantly,  whenever he feels like doing something he does it.  If he were playing outside and saw a butterfly go down the street he would not hesitate to hop the fence and follow it. I wish I trusted enough to let him outside as he wanted. As nice and small as my town is all it takes is watching one investigation discovery that starts out with "It was a quiet southern town, hardly any crime, until...." To make you want to lock your children inside.
   So I question if I am being an overprotective mother by not letting him go outside with out me there to watch him. Should I let his wild side run free and let him play outside as long as he likes or am I doing the right thing?

Friday, June 13, 2014

Summer Fun'n

  Well here we are again with another gap in my posting, but I have a good reason! Summer is upon us and between getting the boys out of school and trying to adjust Cullen's schedule that we worked so hard to cement for school to adjust for the summer months.
   Cullen graduated preschool and I could not have been more proud of him. At the ceremony he was so well behaved and sat on a teachers lap through the whole thing with no interruptions.
   I have been trying to keep his routine pretty normal getting him up at the same time each morning and making sure breakfast is on the table to minimize tantrum risk. I gave also been trying to fill our days with activities because an idle Cullen us not a good thing.
   Our first week out of school we were lucky enough to have Nina (grandma) and Aunt Stacy and the cousins come to our neck of the woods for a visit. A visit from them is always met with much excitement from everyone. The first day we walked around Asheville which was not really Cullen's cup of tea. He is a tactile child he wants to touch everything, in fact I would go as far as to say he has not fully processed what something is until he has touched it, This hands in approach was not looked upon kindly by the shopkeepers of the hippy shops and we were even told very unkindly to leave one shop before he had touched a thing. That led us to seek out some more kid friendly amusements an landed us at Fun Depot. Fun Depot is like a Chuck E Cheese but better because it offers laser tag ,mini golf and bumper cars. The kids had a blast thanks to their generous Auntie the big boys played laser tag and played games and Cullen gleefully ran from one end of Fun Depot to the other making a joyfully circuit several times with me exhaustedly tagging along.
 The next day we went to the worlds best toy store O.P. Taylors, my favorite thing about them is that kids are encouraged to touch everything, After a fun hour there the rain stymied our original plan of going to the fish hatchery so we were chased into a few of the other local shops. In one of the I found a toddler leash a rather handsome one with a stuffed lion on the back. After the exhausting three hours of chasing Cullen up and down Fun Depot and at leatpst one attempt from him to bolt down the streets if Brevard by himself I purchased the leash. It was very useful and he eventually learned to stop running away after several fruitless attempts. I am planning to write an entire list just about the leash so I will stop writing about it now. When the rain stopped we were able to go to the Fish Hatchery and it was a very fun and might I add FREE way to spend the afternoon. We were very sad when they had to go home and our ennui lasted for several days.
  It was a boring week at our house with video games being the cheif source of amusement for the older boys and escaping the house being the favorite of Cullen.  Today we were able to go to the Family Place Fun Day and it was wonderful.
  I love the Family Place when I did not have to work and the kids were younger I took them every day. It is free, safe family fun and I have made some great friends there. It was a reunion of sorts there today as all the kids who stopped going when they started Kindergarten where there and it was nice to see how much everyone has grown and matured over the years.
  I am now in search of more fun and hopefully free activities to do over the summer. It us only the middle of June and I feel like I have done every fun summer activity! I need help!




 

Tuesday, May 20, 2014

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.

Saturday, May 3, 2014

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?

 

Thursday, May 1, 2014

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)
   

Saturday, April 19, 2014

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



Thursday, April 17, 2014

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.






Tuesday, April 15, 2014

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.

Wednesday, April 9, 2014

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.

Saturday, April 5, 2014

Good Days.

                                                         
   My intention in this blog I not to seem like I am complaining about raising my son but rather share some of are triumphs and some of our sorrows with everyone.
    Today was a very good day with Cullen his was in a pretty good mood from beginning to end. In the photo he is eating a very ecclectic breakfast of cereal, choclate milk, cheez it mix in a easter bucket and an apple. Generally if he can ask me for it and I understand what he wanted I will provide it for him (within reason). Today he said very polite "no juice, choc-it milk" and he very nicely handed me the bucket which I once last week put some snacks in for him. He enjoyed this snack bucket so much he now feels a snack is not worth eating if not presented to him in easter bunny spongebob bucket.
    After breakfast he went to the potty and did very well with it all day. We had a very nice conversation while he was on the potty. We have a shower curtain with the ABC's on it and an animal representing each letter. He pointed to the bee and said "bumblebee buzzzzzzx! And pointed to the D and said "duck! Quack quack!" This is extremely chatty in Cullen standards where some days I may not hear him say any words at all. I attribute a lot if his good mood to the fact I was off today. The sight of me in my navy blue and khakis is sometimes enough to send him in a tailspin.  He is going to grow up with a vehement hatred of that color combo.
   He loves being able to spend time with both his mommy and his daddy and we both got to play with him together today which made him happy. Later in the day I took him to the small park by our house and he had a very good time with his two older brothers. He did not wander off as he is sometimes prone to do and was very social with the other children. So all in all today was very relaxed nice day.

Friday, April 4, 2014

To bathe or not to bathe

  As a mother there are certain vows you make to your children. You vow never to hurt them, or scare them, you vow to keep the healthy and happy. What if one of the things that makes them health also scares and hurts them?
   What do you do then? Every time I bathe Cullen he acts like I am pouring acid all over him. It was not always like this, he used to like to take a bath. When he was around one the mention of bubble bath would send him into a fit of happy giggles. There were several instances where I forgot to drain the tub and I would find him happily splashing around fully clothed.
   Thee change did not occur until we moved from to our new house when he was three. I do not know if it is because of the big change we had just made or the signs of his autism was becoming more pronounced. But it was around this period of time where more and more little fears of his started appearing.
   Cullen has a memory like an elephant and once he discovers something he either likes or dislikes he will remember it. He remembers that if we turn on the road near the church and the gas station he his likely going to the Dr. And will whine and cry the moment we turn down it. He remembers that Jarrets sells  doughnuts and apples and if we pull into the parking lot he asks hopefully "apple? Yoh-nut?"
  Lord knows what happened to make him think of the tub in such vengeful terms.Maybe just once the water was hotter than his liking,  Or maybe he got soap in his eye, or hurt himself on a bath toy. Whatever it is that set it him off the tub it appears the relationship between him and bath time is irrevocable. It would be so much easier if he could just tell me why it scares him so much. If he could just tell me "Mommy the waters to hot!" Or "I do not like that soap!" But he can not he can not. I would give anything in the world just to communicate with him. To ask him a question and have him answer me. I want so badly to fix it to make him not scared anymore but I just do not know what to do.
  I have tried several approaches, first I tried a big frothy bubble bath filled with his favorite toys. He was very excited at first and said "bubble bath! Bubble bath!" Yet when when I put him in the tub he screamed and cried and practically pulled me in the tub with him in his mad scramble to get out. So after several attempts with the same results I decided that it was a waste of water and bubble bath. So then I heard that maybe the bubbles and toys were just to much stimulation for him and tried a very tepid bath devoid of toys and bubbles but it yielded much the same results he would not sit down and I had to grab a cup of water and dump it over his head and hold him down to get any washing done. Holding him into tbe tub just makes me feel awful! Like I am a physically and mentally abusive mother but if I do not restrain him he will not get clean and lwting him walk around filthy is not any better.
   The cup dumping incident gave me the idea that I could shower him and it might be quicker an easier. So most nights I just try to get him to stand in the shower for as long as possible while I at least wash his hair. While I do this he grabs on my shirt and screams bloody murder but it is quicker. In the summer as sometimes I grab the hose and shampoo and try to hose him down outside.
video
   It just hurts me so much to see him in pain and crying, to him it really could feel like I am dousing him in acid. So I admit that sometimes I skip a few baths. It is just the the experience usually leaves both of us in tears, emotionally exhausted and very wet.


Wednesday, April 2, 2014

Mornings and Mayhem

Since he was a baby I always liked to wake Cullen up first. When he was little he would scuttle to a corner of his crib and giggle like crazy as I tried to pick him up. Now he likes to race to his brother as rooms and yell "wake up!" at them.
  After he wakes his brothers up he likes to have breakfast immediately. I mean if breakfast is not on the table by the time his cheeks hit his seat we are going to gave a problem. The other problem his that he can not always tell me what he would like for breakfast and if I guess wrong we are going to have a problem. If the morning starts out with us having a problem on either of these two areas then the problem will turn into an issue and the issue will turn into a tantrum that once started is almost impossible to stop.
  This morning I poured him a bowl of his favorite cereal but as a poured out the milk into his brothers bowls I realized there was not quite enough milk to give each bowl an adequate amount. So I doled out the milk and told them the cereal would be extra crunchy today. Well Cullen apparently does not like extra crunchy cereal and cried for five minutes before he dumped his bowl on the floor. After I cleaned up the mess he started wailing "ice cream ice cream!" Now with my other two I would never allow them to have ice cream in the morning but with Cullen if I do not quell a tantrum then the rest of the morning is just shot. He won't but on his clothes,he won't pee in the potty, and I have to carry him kicking and screaming on the bus. So this morning I give in and give him a scoop of ice cream but this also was not the correct choice.  The video posted shows our exchange, in the end he did not just want ice cream he wanted a full banna split with a banana and sprinkles not just a scoop of ice cream. We compromised with a banana and a bowl of ice cream.
video
  He was in a really good mood by the time the bus came for him and we did not have an issue getting on the bus. Any ideas on stopping tantrums without giving in?

Tuesday, April 1, 2014

Meet Wully

Since April is autism awareness month I thought it would be a good time to start my new blog about my journey with my son.
Cullen Lane Penn is the youngest of my three boys, as the easiest pregnancy and the easiest baby. Whenever people tell there birth horror stories to pregnant ladies I like to tell them my dream birth story with Cullen. I got to the hospital I was already dilated enough to put the epudural before I felt much pain and when it was time to push I was barely one song into my birthing playlist I had prepared before the doctor was handing me my baby. He came into this world so easy and sweet. Cullen was doing things way before his older brothers he slept through the night he was the perfect baby.
   When Cullen was one and a half I was going through a lot with his older brother Cody. At three Cody was just not where he should be developmentally. He only said a few words and phrases and he was throwing horrible tantrums all the time. We got him tested and he was placed into the devlopmentaly delayed category and was enrolled in a state funded preschool. While in school Cody blossomed before our eyes, he talked, he could count, name all his shapes and while he still got upset sometimes his tantrums slowed down. I would always bring Cullen along with me everyone loved him he was such a smiling happy baby. I remember one of Cody's teachers said " I can not wait to get you in my class!" To Cullen  and I thought to myself you will never get him in your class he is already doing more than his brothers!
   Around his two year old birthday he was not talking as much as most two year olds. But when he went for His check-up I could check if most of the developmental milestones except the verbal ones. His Doctor asked if I was concerned and I said no, I mean I was an expert now wasn't I? I had panicked with Cody and look at him he was practically a genius.
   So I waited and by the time his third birthday was rolling around he seemed to be losing skills instead of gaining them. I could count the number of words he said on my fingers. There was no denying it anymore something was wrong with my perfect baby. The same team that tested Cody tested Cullen and again was shown to be devlopmentaly delayed and placed in the same school. But Cullen did not blossom like Cody did, still not much as changed since he was two years old.
  The team tested him again looking for autism signs this time, and the came away with the conclusion of severely devlopmentaly delayed and on the autism spectrum. The diagnosis did not rock me. There is so much room for growth but sometimes it seems like that is all I am doing waiting with baited breath for growth. When you have a child there us so much that you want for them, and want to give them and so much of the road ahead for him is covered in question marks. Even the simple task of enrolling in Kindergarten is scary. So this is why  I am started this blog to get feedback, and to share our journey with everyone else.