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.