Tuesday, January 31, 2012

A Sweet Shot Under Not So Sweet Circumstances

1/31/2012 5 Comments

Out of all of my duties in parenting, I think the worst has got to be dealing with Vomit. I am not just talking about cleaning it but even smelling it and hearing it!! I CAN NOT do it. Can't handle it and it has ALWAYS created a chain reaction. I do not do puke and have a very weak stomach. I have written about my experiences here, here, and hereI have been known to bribe my oldest to clean it up for money (I'm not even kidding you), throw towels on top of vomit and wait for someone else to come and clean it up, and even bribe neighbors and friends to help with clean-up. The last 48 hours has been my own living nightmare. My kids got sick..Ugh!

Chucky awoke at around 11:30 pm and I had recently taken an Ativan to help me sleep. He was covered in puke. Gross!!! I guess on a positive note it was his favorite color, Orange!! But, I didn't care about the staining issues, I had to be brave. I cleaned up my son and got him a bucket. Hesitantly I decided to assess the damage and start cleanup. Heading up the stairs with a can of lysol in my outstretched arm and gloves on my hands,my nose caught the smell. My stomach took a turn for the worse but I had to keep going. Steadily I pushed the button on the lysol and sprayed as I briskly walked into the room. Before the stench overpowered the lysol, I took the corners of the sheet and rolled the whole mess up along with his body pillow. I carried them downstairs and tossed them in a pile on the back porch. I left them there, half the job done. Whew, I survived!!

He was miserable and so was I. I was thinking he may have ingested something he shouldn't have. I asked him numerous times and he was not giving me a straight answer. Scary!! His vomit that started as stomach contents turned into gagging and choking on phlegmy foamy stuff! I was nervous. He wasn't even trying to sit up or roll to the side. He was suddenly violently ill and dry heaving. The heaving finally stopped and fever set in. Ugh.. Well, on the bright side he is feeling much better but as soon as his stopped Miss Princess started.

Next day, 5 pm... Princess says," My tummy really hurts." I told her to go to the bathroom and she just laid back down. Five minutes later she was spewing vomit all over the living room. Ahhhhhhhhh!!! I could have screamed. I just sanitized this room.. I have been cleaning puke all night! I tossed her a bucket and insisted she go to the bathroom. Then the smell hit and I ran out the door. Yup!! Mommy is on strike. My roommate thankfully started cleaning up the mess and after containing my stomach I helped finish it up. He said the combined smell was like Chocolate Icing, ummmm.. I disagree and don't think I can ever eat that again!! This child had hazardous materials coming out both ends and I couldn't do it anymore. Ugh.... They are both feeling much much better and no more vomit. I slept a bit today and hopefully tomorrow the children will return to school cause I really want to bleach my house and Lysol everything.

Sweet Shot Day

Thursday, January 26, 2012

Throat Punch Thursday goes to Autism

1/26/2012 6 Comments
I thought this week was going to be great. I thought that my son's miraculous evening may last longer than one evening. What was I thinking? Maybe I wasn't even thinking. Maybe I was hoping. I was hoping that I could savor a little normalcy in my life. Have the Autism disappear for a little while. I hoped that my son could feel at ease for a little while. I hoped that I could enjoy every loving moment for more than 6 hours. My hopes were crushed. I never down my son's autism but being it is Throat Punch Thursday and I seem to be so on the edge, here it goes.
If Autism was a person, I would be on top of it punching the shit out of it this week. Autism has caused so many meltdowns in my home in the past week it is insane. My son wants to crawl out of his skin. He looks so frightened and confused. It truly hurts to see him like this. He sprawls on the floor screaming over things I can't see as so bad. He screams that he is so hot but his skin is cold to the touch. He yells hurtful words yet if I say I love him he monotonously says he loves me back. I don't even know if he is just repeating me or if he really means it anymore. I am saddened when he is like this. Worst of all I do not know which way to turn anymore.

My household is on egg shells, my relationship over. I feel so lost and I am not even sure who I am anymore. I need to touch base with me again. I haven't had a true desire to go out and take photographs lately because I can't stop thinking about all the chaos. I can't blame those that can't handle being "with" me anymore because I don't even know who "me" is. I am not even sure if it is normal to feel like this but I try so hard to bury these things deep and remain functional. I don't feel as functional anymore. I pick up my camera and take ordinary pictures just because I want feel the joy of it again. I want to enjoy my life.

Things seem so blurry. One meltdown leads to another meltdown to another and it is a viscous cycle. Autism destroyed my phone. A bus along with 20 some other cars ran it over because my son was having a really rough morning. It has left bruises on my legs, scratch marks on my son and bumps on his head. I am so fed up with it today. Leave my son alone. Autism may be a part of who he is but it will NOT and I will Not let it have him completely. We are fighters and as sad and hurt and lost as I may feel today, tomorrow is another day. Whew, so... I give a Throat Punch to Autism for the heartache it gives me and all the trials it puts my son through.

Wednesday, January 25, 2012

A Spectacular Change

1/25/2012 0 Comments
Chucky has been having some really tough days for a while and yesterday was amazing. I swear I thought aliens had abducted my son, but I had NO complaints! 

Being that the evening has come to an end for Charles I have to say he has shocked the shit out of me. Yesterday, was such an amazing day and it has been such a long time since he has had such a great day, at least at home!!! Couple things that made my day...
1. He showed his true colors at school. I got a note stating that he was different than usual and had a lot of difficulties following directions.
2. He ate all of his dinner. Every last bite and I have pics to prove it.

3. He took a bath!!, but not before he cleaned up his dominos!!!
4. He ate a chicken leg off the bone!!!!

5. He sat at the table until he ate everything off his plate.

6. He ate baked potatoes!!!!

Such an amazing day and best of all..........


Thursday, January 19, 2012

No News, Good News??

1/19/2012 2 Comments
Needing to post a brief update. I am sorry I havent blogged but with the holidays and doctors I havent been able to blog. Charlie's blood test came back negative for everything. He does have a Vitamin D and Calcium deficit and we are supplementing for that. I think this is pretty good news right?

I think it is a tug of war kinda result. While he does not test for Muscular Dystrophy, we still have no answers about what is causing so much regression. It could be the vitamins but.. these issues have been around since he was a baby. So, off to different specialists to try to find some answers. I just want to be able to help him.

My sister gave me a Sunshine award... LMAO.. Me? Full of sunshine? I feel like lately, I have had nothing but complaints and bad results but... I do try to have a positive note and to look at a brighter side of the situation. When we went for the testings I also got tested. They ran genetic testing on me and I was shocked to find out that I have the exact deletion as my son Buddy.

I have lived for thirty three umm... wait, I think thirty three it may thirty two but whatever, years with Cri Du Chat which wasnt too bad. But, with that I got nervous, called the doctor, insisted on scheduling regular appointments. I told him to check my heart and amazingly with all my stress my blood pressure was 88/60!!! I know sounds too good to be true right? Wait, that was with 5 cups of coffee and a two block walk to their office. That concerned him a bit but he says we will keep an eye on it. I have always had low blood pressure which some would die for. For me, it sucks, for me, it causes me to get dizzy. It makes me sleepy.

I walked into the office, wanting to quit smoking. I need to live forever!! The doctor said he can't advise me to quit so quickly and to take my time. He won't prescribe any meds for it because he says it will increase my anxiety and he doesn't know how I have been managing thus far. So I asked what should I do? He said I am prescribing Ativan and Lexapro and to keep minimizing my daily cigarette intake. He gave me a referral to a geneticist and also wants to see me in 2 weeks.

I guess now, my sister's Sunshine Award will be truly great because even if I try not to be happy I have happy pills. LOL Now onto the questions!!

Favorite Color? Blue
Favorite Animal? Horse
Favorite Number?  0- 0 housework, 0 children, 0 stress, at least for a day
Favorite drink? Jack Daniels
Facebook or Twitter? I love twitter but facebook is a must have for me. 
My passion? Photography
Giving or Getting Presents?  I like giving presents!!!
Favorite Day? Any day that goes by with a minimal amount of screaming or a day I can enjoy a cup of coffee while it is still hot!!
Favorite Flower? Lilacs are my favorite!!!
And last but not least, Thank you Bella, for the award! Now to pass it on!
Holly's House -  I love this blog as she is very down to earth and we share the common bond of special needs parenting. She also addresses some very important topics and keeps it humorous.
Reflections and Renegades - This is another blog I follow and feel needs a little sunshine. She talks about parenting while struggling through depression. I too have been down this road and while I may not be depressed I can relate to many of her feelings.
Dysfunctional Supermom- I love this blog because it always makes me crack a smile, well sometimes I laugh myself to tears. She is an amazing author.

Sunday, January 15, 2012

Just a few cute pics

1/15/2012 1 Comments
 Chucky's New 5 point harness
 He has discovered a "Magic Finger". This is what he calls it because static electricity was discovered 
and as he touched me with his finger he shocked me 
and he thought it was that finger and he had magic. Too Funny
 He is toe walking a lot!!! These shoes are only a month old. Ugh
My clean clothes in the basket and he tips it to "W" sit on it. LOL

Saturday, January 14, 2012

Live, Love and Encourage

1/14/2012 2 Comments
Things have been really hectic lately and all the schedule changes, vacation days, and school delays have really taken a toll on Mr. Chucky Cheese. His behaviors have been so far from desirable. There has been a lot of screaming and uncontrollable rages. I am at my wits end on how to deal with him sometimes. There are not too many parents that I know personally with issues like mine and so it is really hard to thoroughly get it off my mind. 

Earlier in the week my sister stopped by my house and Charlie was in mid melt. She tried to approach him and he was not responding. It was really hard to try to step back and allow someone to try to help because I knew in my mind that he was beyond calming down. This had to take it's course and likely there would be another one to follow. She really did try though and I found it interesting that her face seemed to bear the same pain that I feel. Watching him so upset and wanting to help him but knowing he needs me to stay away. She was seeing what I see every day. The tears and screaming, face getting splotchy, wanting to rock him , hold him, love him but he won't let you near him. He looks so confused and angry in this state and at times it is very scary. I often find myself wondering what I am going to do when he completely overpowers me. What will I do? What will others do?

Yesterday, my sister had called and was going to stop in after work but opted not to. I asked why and she said she felt as if she had upset Charlie by stopping by. I assured her that he had already been screaming for 15 min and she seemed to feel as if he would have stopped when she showed up. In some cases this is true. She can on occasion pull him out of a melt. This meltdown, like most of his lately, was not that easy to fix. I felt sad that she felt my son didn't want her here cause he really does love her. 

I wanted to tell her about how I feel when this occurs. I wanted to tell her how I thought my son hated me for years. The thoughts emerged to relay to her that those very same feeling she had are mine on a daily basis. But, I didn't. Instead I find myself wanting to beg her not to walk away. I know she wouldn't cause she loves her nephew, but the thought still creeps on me. I want to show her all the adorable pictures I can so she can forget the face of pain and hurt. I don't want her to ever feel as if he doesn't want her here. I know how that feels. I know that pain and I don't want anyone to feel that.

Chucky Cheese is an amazing little boy and I know he doesn't mean to act the way he does. He loves life but seems to get so confused and overwhelmed. He doesn't know how to communicate it all. He lashes. This past week was the worst I have seen him in a very long time. I have to look for the positive things even when it seems there is no good. 
I feel I have to share the end result of another meltdown that happened this week. Chucky was upset over a school delay and melting snow. He really got upset and opened a brand new box of noodles, throwing them all over the floor. I was already totally overwhelmed and had another mom call me to talk me through the morning. I walked away into another room and when I went back in the kitchen, this is what I found. He had made a letter "C" on the floor with the noodles. I had to take a picture of his accomplishment as I am excited over the small moments.

I know that many parents don't understand the small joys that I celebrate and that it probably drives them nuts to hear me constantly talking about them. I hear the lack of excitement but I don't care. I need to share these moments as much as they need to share the fact that their child made the honor roll or scored their first touchdown. 

These joys I celebrate are the same to me as your baby's first steps because I waited so much longer to see and hear the things that most hear much sooner. I still get excited when my son says "I love you" and when he looks me in the eye or hugs me spontaneously. I also feel the need to rejoice and share these moments with whoever may listen disregarding their lack of understanding or interest. We all live our own lives and rejoice in our own moments. We also all have fears and for some they may be buried pretty deep. But, you can move past that because I was that fearful parent without the knowledge of special needs. I was thrown onto a planet I knew nothing about. I am thankful to the wonderful new support system I have that we all need. 
This post was inspired by my sister at If This Is Motherhood. At first her post angered me. Then I realized that everything she had written I had already known. 

Wednesday, January 11, 2012

Holiday pics

1/11/2012 0 Comments
The holidays have passed and with much help the children were very excited and pleased. I have so much to be thankful for and I am very grateful!