Friday, July 20, 2012


7/20/2012 1 Comments
I figure because of new readers, friends and family I should give an updated introduction into my family. I am a single mom of four beautiful children. I am 33 years old and enjoy photographing. As a child I led a challenging life and thrive to prevent my children from ever having to endure that.

My oldest is Princess, who is going to be fourteen on the 7th of November. She loves to sing and has an amazing voice. She is a tomboy and loves hunting and skateboarding. As she was an only child for five years, she finds it difficult dealing with her siblings at times. She is very scattered in her thoughts but is an amazing young lady. Princess had a lot of medical problems when she was young but it has all cleared up now. She had GERD and Bilateral Syndactly. GERD is a gastro-intestinal problem and the Bilateral Syndactly is a birth defect in which the last two fingers of both hands were joined. They were separated at 8 months and again at a year and a half. About two years ago she underwent another surgery on her hands to attempt to straighten the fingers to improve function, unfortunately it was unsuccessful. The latest surgery was for her tonsils and adenoids. She also struggles with borderline ADD. Regardless, she is a beautiful young lady.
My second child Chipmunk, is going to be nine on the 25th of August. She is extremely bright and thoughtful. She is a very gifted young lady who can read at a sixth- seventh grade level. She met all her milestones early and knew how to write her name, recognize her letters and numbers and drew pictures with immaculate detail before Kindergarten. She is sensitive and bubbly. I call her my Chipmunk because she never grew out of her chipmunk cheeks. She also loves to sing and is reading at a sixth to seventh grade level. She is mathematically and artistically gifted. 

Both of the girls have been enrolled into a siblings group to help them cope with the emotions that come from having siblings with special needs.

My third child was also born on the 25th of August. We call him Buddy and he is Chipmunk's Irish twin. He was born on the same day, a year later. He had speech delays along with a lot of sensory problems. I might add that similar to his oldest sister he also had the issues with his fingers although his was actually one bone and not just joined skin. His was separated at 8 months and again at 1 year. This was done twice for him because as I called him"My Little Houdini", at 8 months old continually pulled the casts off his hands with his feet which caused them to web during healing. Buddy received early intervention until the age of three and currently receives Occupational therapy in school for his hands. He had a tongue tie which was clipped around the age of three. He remains a very demanding child with a lot of sensitivities to sounds and touch. Buddy was diagnosed with Tourettes Syndrome in Jan., Aspergers in Feb. and Cri du Chat in March of 2011.

My last child, Chucky Cheese, was born on the 18th of March. I may refer to him as either Chucky or Chucky Cheese depending on the circumstances and his mood. LOL He was named after my father whom he never met. He is an amazing young man but very challenging. He has Mild/Moderate Autism, Sensory Processing Disorder, Hypotonia, an anxiety disorder, a syrinx from T6-T10 on his spine and is being tested for other medical metabolic issues. While he can now speak, is partially potty trained and able to do simple two step tasks he struggles to get through each day. Therefore my other children also struggle too. Chucky Cheese was born 3 weeks early at a healthy 7 lb. 12.9oz. He failed to meet any milestones on time. He couldn't hold his head up, rarely smiled at you, and didn't coo. He hated being touched and would not eat while you were holding him. The only vocalization out of my son was screaming. He was most content sitting in his swing rocking side to side. Early intervention started when he was 8 months old. He would head bang and touch sharp objects. Chucky Cheese had NO sense of pain or danger. He remains in a special needs school and his motor skills are functioning at a three year level. Cognitively he has made immense progress and is almost at age level in most areas. His processing s very slow and his speech is amazing!! He proved the doctors wrong as they didn't feel he would speak. He has such persistence and strength. Regardless of all the medical stuff going on he is still strong and keeps on going without complaints. He has taught me a lot in his six years. Patience must be the first and well, unconditional love is right on top too.

Lastly I introduce myself!! My name is Charlene. I am the MoM that seeminly is holding this all together. Not sure how but masking tape is usefull!! LOL.. 

It takes a lot to maintain a household and keep harmony and I have realized that special needs, is not only a feat for the parents but also the siblings involved. Unfortunately in the mess of things there is always the child that feels he/she is not getting attention. In my case that falls on my girls cause they do not demand my time as much and they can function. I want to make this better but I really am not sure how. Most of all what a lot of people forget is that it is most difficult for the child who has it. 

I hope this blog gives the whole story into a household with Special Needs children. It isn't just about the child with the disability but also the others that live with it and deal with it each day. 

Thursday, July 19, 2012

Releasing the Anger and Hurt

7/19/2012 0 Comments
Guess I am just a slacker, I don't know how some of these moms do it. I am not good at managing time and I tend to consume myself reading articles, helping other parents and researching medical stuff. The end result seems to be NO TIME TO BLOG.

So far I am surviving, cant say I am dealing with all of this great and my hopes are high. I cant even try to tell you how I feel because I don't know. I am angry, sad, scared, amongst many other emotions that I can't even describe. I still haven't gotten any test results back but they did run the full Mitochondrial test and they mentioned Leukodystrophy. It is so scary to even imagine so I am sure you can understand why I haven't posted about it.

The thoughts race through my head like wild fire and when I finally sit down to write either I feel as if what I am feeling is selfish or stupid or I totally forget what I was going to write. Writing things down for later doesn't even work anymore. I am the one that loses the book, paper, pad completely or I just can't even take a second to write it down. Do you remember the egg shells I spoke about? You know the ones that I feel like I am constantly walking on??? I think they have turned into shards of glass. They hurt. It hurts to know that something isn't right and to see him so frustrated and not be able to help him.

I sit up at night wondering how I can help him and what I can do to see him smile more. I miss that smile throughout the day. I hate the screaming, yelling, kicking and I hate that I feel angry at him sometimes. I shouldn't be angry at him. I love him so much but honestly I DO get angry at him. I have caught myself three times this week start to yell at him and take a deep breathe and change my tone. I don't know if these are normal feeling or maybe I am not as good of a mother as everyone seems to think I am. I don't feel strong anymore.

I can't sleep, have NO appetite, and I worry all the time. The other day I went for a walk with Chucky Cheese to the neighbor's house. They have chickens, pigs and a horse that he loves to visit. They had company and introduced us all and told me to have a seat. But.. I couldn't stay sitting, I was constantly watching and guiding. The man said,"You worry too much. Stop being a worry wart!!"

I don't take offence cause I am sure he has no clue what my son is going through but I feel as if I am becoming that over protective mom. I am like that because I am scared. I couldn't bear to lose him. He is my world. Sorry this is a jumbled mess but I just had to write it all down. I needed to let it all out, and cry, feel and release. I needed to be honest and say that I am very angry. It just isn't fair.....