Tag Archives: Pervasive Developmental Disorder

End the Word 2015

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Today is the 2015 “End the Word Day”!

I am joining the many strong individuals who will fight for what is right, to stand up for our families, friends and communities. We are using our voices to STOP the HATE, we must stop the discrimination and degrading of individuals. Together we can make a difference!

Many of us used the word retarded or retard as children and sadly many still do. It’s ugly, it’s not just a word it’s a feeling. The r-word is offensive, derogatory, insulting, cruel, discriminating and it’s continued use is just plain WRONG. Change begins with us, it only takes one person to make a difference. Imagine how many lives we can change when we are united, when we are many. We must teach our children to be kind and accepting. There are no two people alike and there never will be. We are all created equal!!

This is my beautiful AMAZING daughter Sophie. Sophie has Cri du Chat Syndrome, born with a missing piece of the short arm of chromosome 5. We were told she would not survive and would never function because she would be mentally retarded. Sophie is “developmentally delayed” but perfect the way she is. Sophie is stronger than anyone I know and SHE IS NOT A LABEL! She is my daughter!

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In 2010 the US Senate passed “Rosa’s Law” which is for the purpose of eliminating the word (s) retarded or retardation for the purposes of diagnoses, education and eligibility for persons who are disabled. The terms “mental retardation” are now “intellectual disability” and “mentally retarded individual” is now “individual with intellectual disability”. Other parts of the world like the UK frown upon the use of these words. We would not use the word “cracker” to describe a Caucasian or the word “nigger” to describe an African American, nor would we use “spik” to describe a Hispanic. Why? Because the use of all of these words are unacceptable. They are derogatory and demeaning. So why is it ok to use the word retarded?

Mental retardation or retarded are words that were used in an era long ago to describe individuals with disabilities. It replaced the words idiot, imbecile, moron, mongolism and trainable; it is because of this association that it is unacceptable to use these words. Until the middle twentieth century individuals with intellectual disabilities were hidden behind closed doors. It was shameful to have a family member that was different and the majority were institutionalized from birth so many never even knew they existed. Those that were educated were excluded from public education or were educated away from the typically developing individuals. Over time the word (s) began to be used as an insult or joke using it casually to demean someone and or to describe them as stupid or incapable of learning. And this is what is still being taught today in this generation, and it’s sad that in this day in age there exists such ignorance in the world.

It is appalling that people in the public eye think it’s ok to use the word so freely to describe something or someone they dislike or even to reflect their behaviour as stupid. There are so many people out there using the word, it’s all around us from your neighbor to children to celebrities and politicians the use of the word has become a routine. It’s very sad that we are teaching our children “hate” instead of acceptance and equality.

People with intellectual disabilities are not seen as equals in our society and are refused the acceptance as full citizens. Why? Because society has created many misconceptions of who individuals with disabilities really are; they have been subject to discrimination in most countries around the world for centuries. They have been targeted, sterilized and even executed for being who they are. By devaluing human life and agreeing to use hateful, demeaning words to express yourself you are enabling HATE and agreeing that a human being has no value.

My daughter was given the medical diagnosis of “mental retardation” when she was three months old on paper. In the almost six years of my child’s life not one doctor has ever uttered those words to me, why? Because even they know it is a discriminatory word and they are the experts. The truth is that individuals with disabilities are worth just as much as each of us, they are member’s of our families and communities and that they are amazing people.

It’s about more than just a word, it’s about respect! Respect for human life. As a society we must stand up for what is right and stand against what is wrong. Our children learn from us, it is crucial for the future of this country and for humanity that we stop teaching hate.

Spread the word to end the word!

END HATE!

Photo Stream

Pictures Speak louder than words!1653856_10203283408514976_22137223_n 1012542_637154623019177_1156423493_n Gabrielpic Elyaspic Emilypic Arianapic 1964872_10203426741378208_487764960_n 1545896_10202782830560840_1500697024_n

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How far she has come.

With each passing day I am more amazed at the progress Sophie is making, she is a fighter. Her will to learn and live are truly inspiring, it makes everything else seem so insignificant.

We were told Sophie would not survive past the age of 2, she will be 5 next month.

We were told if she lived she would be in a vegetative state and would never learn. Today with a heart full of love, hope and gratitude I will tell you how far she has come.

Despite ALL of her medical issues she is thriving and happy. She smiles everyday, her laughter is contagious and her beautiful innocence is unlike anything you could have imagined to have the opportunity to experience. There is this immense peace that surrounds her.

Sophie CAN walk! She can run and has begun to jump. She is so active it is truly an amazing sight.

Sophie CAN eat, she LOVES food. She may not yet have the ability to chew solid foods but this does not stop her from enjoying what she loves. From oatmeal to rice and beans to ice cream she enjoys it all. I used to think I would never see the day where Sophie would no longer be a slave to Pediasure and the blender, I was so wrong.

Sophie CAN love. She loves all those who surround her, she can give kisses, hugs and loves to cuddle. And she knows when someone is sad, especially me. There is no hiding your emotions from her, she is highly intuitive and extremely sensitive to the energies around her.

Sophie CAN make choices. If you give her options of different foods or movies she will chose what she wants without direction from someone else.

Sophie CAN communicate. It may not be with words but she gets her needs across and has no problem expressing herself. Just because she cannot speak does not mean she does not have words, her words come from signs or expressions and utilmately all the words we, her family have for her.

Sophie CAN participate. Sophie loves to be around people; while her health prevents her from truly experiencing the world when she is given the opportunity she gives it her all. And even sensory processing disorder won’t stop her.

Sophie Comprehends. The doctors expected her development to not flourish but that did not stop her, Sophie understands. She understands more than what I would have ever imagined she would have the ability to comprehend.

If you tell her let’s go bye bye, she will try to undress herself because she knows she has to change her pajamas before she leaves the house.  And before you tell her that its bath time be certain you are ready because she will not wait, she will be in the bathtub before you know what hit you. And be forewarned at dinner time you cannot pass her up, when she sees the kids sit down at the table she runs to her chair and makes sure we know she is ready to eat. She knows what goes on in her surroundings and chooses to react when she is ready.

As I look back at the last five years I feel so very blessed but I also feel sad that for a short time I never thought she would ever come this far.

Sophie’s siblings have always loved and accepted her just as she is, she is just one of them. Their love has been essential to her determination and strength, they complete her just as she completes them. We cannot dwell on the reality that Sophie does not develop like most children her age because then we would miss out of who SHE is. I like to say Sophie is hardwired differently, we can’t all be the same after all.

Sophie has come a long way in these last almost five years of life. She is what love is made of. We are so proud of her, more than words can describe. And while she may not be like everyone else, she is uniquely perfect just the way she is.  The world would be a boring place if we were all the same!

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Living without the meds but healing.

I’ve been focusing on emotional healing lately, it’s been overwhelming with so many different emotions running through me. Several weeks ago I decided it was time to see a doctor, it was one of the best decisions I have made in a very long time. I realized I was not in a good place and I needed to truly focus on self-healing. I agreed to take an antidepressant which helped me immediately, it was the best I had felt in a very long time but after several days I developed chest pains that became persistent. After a visit to the doctor she decided my meds needed to be changed.

The new meds made me feel awful but I decided to stick it out because I have a friend who is one them and after the side effects wore off they really have helped her. I was hopeful when the side affects began to dissipate and I started to feel somewhat better but then I developed horrible headaches. The doctor had told me to wean myself off of the meds if I began to feel off and so I did.

I have always had a fear of medication; I am somewhat a naturalist when it comes to sickness. Ironic isn’t it that I am the mother of a child that requires so much medical intervention? Despite my fears I would never deny my children any medical care that will keep them safe or healthy.

Anyhow, there is a reason I have always feared medication and now I understand why. At first I thought it was the fear of ending up like my mother, my mother is a prescription addict but I have just had horrible experiences with medicine having reactions to several different types of medications. I refused pain medication and opted for natural childbirth over and over again (with no regrets), of fear of the negative side affects I could suffer from the medication. In 2008 after an emergency appendectomy I had to be knocked out in order to control a severe reaction I had to the morphine I had been given for the pain, my husband and brother were already overly stressed because of the emergency nature of the situation. Today I honestly think it is my subconscious warning me of my sensitivity to medicines.

After much thought I have decided that despite how much better I have felt on the antidepressants I need to move forward without them. I cannot afford to take the chance of something bad happening to me. The last few weeks have truly helped me, feeling relaxed and calm have helped me more than I could have imagined.

I am now in a better place emotionally. I have direction, new goals and I feel as if I am me again. I feel as if those few weeks helped me find myself, it was just what I needed.

I believe I will always have my emotional downfalls but that is just a part of what my life will entail. The difference between then and now is that I am more aware and I know those emotions will not destroy me, I know I am strong.

For the first time in a very long time I feel like “Charity” again. I can see myself and I am happier and more relaxed. I may not be able to take the antidepressants but I am finally healing from within. I am in a much better place and I believe it will only get better from here.

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Always someone negative

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I am a blogger and I love to write. Writing is not only therapeutic for me it’s also an accomplishment I am very proud of. But as I have learned there is alot of negativity you can be faced with when you write, especially when you write about your life.

When I started writing I was afraid of what I could write about, I knew I wanted to write about my life and my family’s journey but I was afraid of what people would think of me. That was over three years ago and I have not only grown as an individual but as a writer too.

I always vowed to myself that I would be honest with my readers, that I would say those things that many are to afraid of saying aloud. I chose to be true to myself and my readers in my writing even if it’s not all a bed of roses. Each of our lives are different, there are no two people the same nor are there two writers the same. And, that’s what’s beautiful about the world that we are all different.

As a woman there are so many more obstacles we are faced with in life, every decision we make is scrutinized and judged. If we choose to have children we are sweet but if we have more than two we are breeders. If we choose not to have children well than most would say we are selfish and cold-hearted. Well I say no and no. Making a choice to have a family is a “personal decision”, whatever the decision it does not define the person you are or who you will become.

I have had a few incidents with blogging bullies who have made it a mission to consistently attack me for no other reason other than they are bullies. Maybe the reasoning is much more deeper, maybe they are struggling their own battle and I happen to hit a nerve so they choose to take their frustrations out on me. What ever the case, I have learned that it’s all part of blogging world. I no longer take it personal.

No one is obligated to read my blog. My journey is just that, my own personal journey just as my decisions are precisely that. Yesterday I posted about finally understanding that I am ready to move forward from having children and that post seemed to really hit a nerve with someone. This person has sent me multiple messages attacking and insulting me. Apparently in the eyes of this individual the fact that being a mother is not the sole purpose for my living makes me a selfish person. And according to this individual I live off of the government and I am a breeding machine. And, I am the one with the problem???

I do not feel the need to fuel ignorance which is why I will delete nasty insulting comments from my blog which is my personal space. And to clarify I have worked since I was sixteen years old and have always taken care of my family with the sweat off my back. That is something that will never change.

Being a mother has been the most rewarding gift in my life and I will always treasure it but it does not define me as an individual, it is only a part of who I am. I have been successful and will continue to do so despite ill wishes from unhappy individuals. The fact that I have the strength to accept that I want more for myself only proves how strong I truly am. There is nothing wrong with wanting more and striving to be exceptionally happy and fulfilled. I am finally strong enough to admit that without feeling any guilt and that is trully an accomplishment.

For women it seems we’re damned if we do and we’re damned if we don’t. Only I decide who I am and what I will accomplish in my life, no one else but me.

 

When you know your done having kids

DSC_0967For years I have been asked if I would continue to add to my family and my response was usually, yes. I was always told that a women knew when she was done having children and I used to think I would never reach that point. I always felt like being a mother was my calling and the thought that I would never want to have more children seemed an impossibility for me for a long time. About ten months ago I contemplated adding another child to my clan, there was this emptiness, and incomplete feeling that I wanted to fulfill. I soon realized the emptiness that I was feeling was within myself and the sense of self loss I had been carrying.

As I have begun to rediscover myself I am grateful that I had my children young but I also feel like it’s time for me to focus some time and energy on myself. I now know with 100% certainty I do not want anymore children; the shear thought of being pregnant and having another child gives me anxiety.  Not because having another child would be bad because I know children are a blessing, it’s  because I feel complete. And honestly, I don’t think I can stretch myself any thinner than I already am.

I feel as if I’ve closed a huge chapter in my life and I am ready to start writing the next one. I had my children and they are growing up, I am raising them to the best of my ability and in the next few years my older children will be adults and they will be creating their own lives. And one day possibly starting their own families, the best part is that I will be there to enjoy it with them.

I am thirty-four years old and I am starting fresh, I am rediscovering who I am and what I want. After raising children for the past seventeen years I have realized I want more for myself. I love my family and have no regrets but I want to be successful once again. I want the opportunity to go back to school and open up a catering business one day. I want to love myself for me not for how good I have been to others, although being good to others is not a bad thing. I would like to travel and live a little more than I am now. I am discovering that there is a whole new set of dreams and goals I have for myself and I deserve to have the opportunity to fulfill them.

The truth is that even when all my other children have grown up and left home to begin their lives there will always be a child at home. Sophie will always have that beautiful innocence about her and despite the fact that she will grow older she will always be a child.

I always said I wanted to have all my children before I turned forty so that I could have some good years to dedicate time for myself and that’s one goal I did accomplished. Now the next chapter of my life begins.