Tag Archives: Differently Abled

COMPASSION….COMPASSIONATE

8 Apr

Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others.Compassion becomes real when we recognize our shared humanity

 by Pema Chodron

I just returned home from easter dinner and decided I needed to read my Brene Brown book “The Gifts of Imperfection.” I came right to the page with the quote above. It really spoke volumes to me this evening. I am completely stuck on this idea of compassion not only for my son, but for humanity in general. I realized after Blaise was diagnosed that I had not practiced enough compassion in my life. When you have a child with special needs or a medical condition of any kind you change your ways really fast. I not only began practicing compassion, but made it a full life changing event for me. I have compassion every where I go. I look at everybody I meet and think to myself the same thing over and over, “You never know what somebody is going through, you never know what it is like to walk a mile in their shoes.” So I just send people love.

I can’t help it when it comes to my son that I wish people would have more compassion for him. I don’t want people to pity him, he is an amazing individual, but compassion for the challenges he has. It breaks my heart into a million pieces when I can see that people don’t have compassion for him, when they don’t even realize the faces they are making when they look at him, and how those faces can really hurt. I can always tell when somebody is looking at my child like he is less than, and that really gets me going. I want to go to the top of a mountain and scream to the world.

WHY CAN’T YOU SEE ALL THAT HE IS, INSTEAD OF ALL THAT HE ISN’T!!!!!!!!!!!!!!

I can see all these things in him. I see an extremely loving child that can make anybody smile. I see a child that will never forget your face or name after meeting you just once. I see a child that lights up when his family walks in the room. I see a child that has a unique gift with becoming one with music. I see a child that can memorize things I still can’t as an adult. I see a child with the gift of laughter. I see a child that has pure joy running through his veins. I see so many things, why can’t everybody see these things too?

I will never stop fighting for him. I will never stop correcting people when they say hurtful things to him. I will never ever stop standing by his side and telling him to stand tall. I will always let my son know that he has a place in this world.

I wish that all people realized how in reality we are all just one people. That we are all a shared humanity. My life has opened up tremendously since I came to that realization myself. I have opened my heart up and I have been overflowing with joy and abundance of love. It is a sad and lonely place when we can share our experiences with one another. It is a cold and dark place where we sit in judgement of our fellow-man. I prefer to sit in the light of allowing myself to feel joy for others and pain for others.

3 words for today

BE COMPASSIONATE NOW

I will teach both of my children the same lessons I live by. If you want love, then you must be love. If you want joy, then you must give joy. If you want COMPASSION in your life, then you must have compassion. You must BE all the things you desire to have in your life. It’s that simple and that real.

I know this may seem like the rant of a pissed off mom, and you may be right. When I gave birth to my son I had no idea how my life would change, how much he would change me. I am so blessed that he chose me to be his mother, that he chose me. That is a very powerful statement, and true.

HE CHOSE ME TO BE HIS MOTHER. 

That is a big responsibility and I intend to live up to his expectations. I will help hold him up to the light until he can see his light shining on his own. He is a force in this world and I am here to clear a path for him. I will walk with him to the end, no matter what it takes.

This was a post one of my PWS moms posted on her page. It is brilliant and I have been wanting to share with the world. Thank you Janis!

In Our world, Nobody should have anything negative to say about a person with special needs. If you only knew what they have gone through to get to where they are. The years of different therapies, special diets, multiple doctors appointments and special equipment. Every milestone is a miracle. Don’t look down your nose at tehm, admire them for their perseverance and their ability to still smile after all they have been through.
WE ARE THE VOICE OF 
PRADER-WILLI SYNDROME
 

The Pain in My Heart

11 Jan

INTELLECTUAL DIS-ABILITY

There are no words to describe how my heart hurts when those words are used to describe my son.

I feel the sadness take over my soul. The well starts to fill, and if not contained I might very well overflow today.

I listen to all my friends talk and prepare for their child to enter kindergarten. It is all really simple stuff like, what teacher will they have, or will they ride the bus?

I wish it was that simple for us. No, it isn’t. We have to undergo another round of testing, followed IEP meeting after IEP meeting.

We have to fight to get the extra help our kids need. We have to be prepared to go to war for them.

My child is not disabled.

We are all human aren’t we? We aren’t so different inside.

So here are my 3 words for today.

Here are my 3 words to explain how I feel about my son. Here is how I feel it should read.

Today I was informed that the school psychologist is suggesting that Blaise not be completely mainstreamed. Why? She feels that he needs to be labeled as being, “Intellectually Disabled.” God, that just burns me up, it hurts.

Does my son have learning disabilities, of course. I know plenty of “typical” people who have learning disorders as well. I know they are trying to get him the best care possible at school, but my heart is heavy right now.

I want my son to get the best education possible. I want him to have as “normal” a life as possible. I want him to love school and love life. I know that the labels are just there to get “services” for school, but I hate them. I hate labels. I hate it when others label my son.

I hate that I even have to fight for him to get an education. I hate that I have to fight to get him an aid so that he has the best chance at learning. Oh let’s not forget the aid to help him stay away from food, you know because HIS LIFE DEPENDS ON IT!

Why, why is this even a question. Why with all the information you give people they think they know better. They think that your child has an eating disorder that they will grow out of. They think that your child should be able to learn to control themselves around food. They think that sheer will power is all your child with PWS needs. I wish they only knew. I wish they knew what it was like to be on a 24/7 vigil for your child. To wake up in the middle of the night and say, “oh crap I left the fridge unlocked.” To know what it is like to never get a full night sleep because you are always listening, always waiting for the moment your kid gets into the food when your asleep.

Blaise has it tough. He has 3 diagnosis. Prader-Willi Syndrome/PDD-NOS(autism spectrum disorder)/Sensory Processing Disorder. This is a lot for one little man to deal with. In saying all that do I think he can handle school, YES!!! ABSOLUTELY. Do I think he needs an aide full-time, YES! ABSOLUTELY.

I will keep an open mind as I go into this meeting with the school. I will think about what they are offering. I will also be ready to go to battle if I have to, whatever it takes.

This is just a normal day for us. There is always so much, so much to think about, so much that weighs on me. Today though I am in a valley. Feeling sad for my son. Feeling sad for his never-ending fight in life.

As the parent of a child with special needs we already fight so many battles at home. Why, why I ask, should we have to fight for our children to get an education? I will never understand. ;(

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