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Tag Archives: special needs
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What to Learn from a 6 Year Old Who Has Autism « Positively Positive

28 Mar

Choosing something different. Choosing to shift, be different, move on, move forward, or live something new.

You don’t need to ask permission or wait for the okay. You just need to say the words. I’m all done now. I choose something different.

via What to Learn from a 6 Year Old Who Has Autism « Positively Positive.

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Careful When Judging

13 Sep

I normally do not rant on my blog, that is all about to change.

This is what I have to say. I am going to say it as loud and clear as possible.

When you are out in the world, at a restaurant, grocery shopping, driving in traffic, or at the doctor and you see a child screaming or a mother losing her cool and grabbing her child by the arm and being stern; BE CAREFUL BEFORE YOU JUDGE THEM. Be careful placing judgement upon others for you know not what battles they are fighting. 

It has been months since my family went out to eat. We went out for a bite at a local, casual restaurant. Very loud, very kid friendly or so we thought. At the end of the meal the waitress, who was very sweet, became very overwhelmed with her tables. A young man came in and was singing while playing the acoustic guitar, and a very unfriendly table had just sat behind us. Our little one was really struggling so my husband decided to take him home, and our oldest son refused to leave and stayed with me. He wanted to see the guitar player, but I had to wait for the check. All hell broke loose. He started screaming, the table behind us was in my face, and the large table of young 20 somethings was looking at me as if they should call DFCS on me for grabbing my son and walking away. Now my son is screaming at the top of his lungs and I put my hand over his mouth, at this time he proceeded to bite my hand, just narrowly missing breaking the flesh. All the while the entire restaurant was staring. Let me point out that this hasn’t happened to me in quite some time, and typically it doesn’t bother me, this time it did.

 

As I left the restaurant I wanted to walk back in and confront the 2 tables that were staring at me like deer in headlights. I wanted to say something like this.

“It isn’t polite to stare, but since you are let me break it down for you. This is my 5-year-old son. He suffers from a rare genetic disorder called Prader Willi Syndrome and autism. Although he may look “normal” to you, I assure you he is fighting many battles. Before you judge my behavior regarding how I handled my son you should know this. I only slept for 3 hours last night. My son is sick and when that happens his behavior becomes more than any of you could understand. My husband and I are in the middle of the most difficult financial time of our lives, and I am dealing with my mystery medical issues that seem to elude my doctors. I am human, I am not a robot. I have one child with PWS and autism, and a second with hyper-activity and mood dysfunction disorder. I may have looked like a crazy woman to you, but you couldn’t imagine that I have been up handling this since 4am today. As the parent of a special needs child we are “supposed to stay calm and not lose our cool.” Unfortunately for me I am not perfect and I do lose my cool on occasion, tonight was one of them. I can say this with absolute certainty. Most people in the world could not walk a day in my shoes, most people could not even begin to comprehend what a typical day is for me, let alone these days where things are just not going well.

Tonight I write not just for myself. Tonight I write for my thousands of extended family members. My family of parents/grandparents and caregivers of those with special needs. Tonight I write for them. Tonight I come to you and challenge you to this:

When you see a situation like me taking place, don’t stare. I challenge you instead to offer a hand, offer your heart and see if that parent or caregiver could use some help. I will tell you that a smile goes a really long way. A smile goes a really long way in the heart of a special needs parent in the midst of a crisis with their loved one.

“You must be the change you want to see in the world”-Ghandi

Help me spread the word and please share this blog with all of your friends.

Namaste and thank you for reading.

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
 

Maria Lin: 6 Things You Don’t Know About a Special Needs Parent

10 Mar

Yesterday as I scrolled through Facebook I came across an article posted by numerous friends.

The title struck me, “6 Things You Don’t Know about a Special Needs Parent.”

I must read this I am a Special Needs Parent. I opened the article up immediately, wow!


This article was beautiful and spoke to me, and for me.  I am not the only one. I lost count at how many times the article posted  online.

I read the article and it hit me immediately. I tapped into exactly why this article was so important, why it was touching so many lives. It goes back to what the amazing storyteller and researcher Brene Brown writes in her books and shares in her videos.

We all need to feel connected, we all want a sense of belonging.

This article does all that. For the millions of moms and dads who raise special needs kids it is a reminder that we are not alone. Then the icing on the cake is the connection that you feel to the author, and even greater the millions of others who feel as you do.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs.

via Maria Lin: 6 Things You Don’t Know About a Special Needs Parent.

I read this brilliant article and immediately wanted to know who was this amazing woman, I had to find out. I immediately tracked her down on twitter and beyond. I found her private email and sent her a letter straight away. I want to be friends with this poetic writer of special needs truths, this everyday normal mom just like me.

Who is Maria Lin?

Maria Lin is the editor in chief of LearnVest, the preeminent website for women and their money, where she writes about money, time and human behaviors. She was the co-founder of cult lifestyle site UrbanDaddy, and has written for publications such asReal SimpleNew York magazine, Time Out New York, and has appeared in The Washington PostABC NewsFox Business NewsThe Wall Street Journal, and theBBC. She graduated from Swarthmore College and Berkeley Law School, and attended the Columbia Graduate School of Journalism. She lives in Manhattan with her son. www.marialin.com

She blew me away. She wrote back. She was kind and humble. I asked if I could share her blog and she said, “YES!” I am so thrilled.

If you are one of the few people who hasn’t read this article please take the time to do so now.

Parents of special needs children will rejoice that you are not alone.

Even if you don’t have a child with special needs, this article will open your eyes and your hearts to our everyday struggles.

Thank you so much Maria Lin. You have made so many families feel a sense of connection and belonging. I am so very grateful for that!

Happy Happy Joy Joy

29 Feb

I have been a blog slacker this week….

I have returned to the land of blogging. This past week was absolutely torturous. Impossible to write anything. Hey I was working on about 3 hours of sleep a night here.

Last week and the beginning of this week have proved to be very challenging. Calling on all of my strength, courage, and compassion to make it through each and every day. I watched my one child literally have a nervous breakdown, while my other child bounced off the walls for 10 or more hours a day.

Final outcome=mommy overload.

As things began to slow down I came to one of those realizations that make you say, AH HA!

I survived the madness. I made it through another day, another week, and another month. I can do this, albeit hard, but I can still make this work.

My plate is so full right now that at times I think my head might literally come flying off of my body.

Currently I am:

Getting ready to start Yoga Teacher Training

Planning my One Small Step walk for Prader Willi Syndrome

Getting my wisdom teeth out in 2 short days from now

Have almost 10 doctors appointments(specialist appointments, for those of you who don’t know those are really long and far away) for Blaise in the next two months

and….

Working on trying the Feingold diet with Maddock my youngest (For those of you who don’t know it’s a strict diet to help hyperactive children)

So there you have it. My crazy life in a nutshell.

This past Sunday was a crazy day here, it was a typical Sunday for our family. I read a few of my friends post on Facebook about having a lazy Sunday with their kids and spouses. My husband and I looked at each other and laughed. That is so far from a reality for us. We can’t ever imagine just having a lazy day. We love our children more than the entire world, but they are a challenging bunch. Not to mention when you have a child with PWS you can’t just go and take a nap and let that child fend for themselves. Their life depends on you, you are on duty 24/7.

That being said, I LOVE MY LIFE. I LOVE MY CHILDREN. I LOVE MY CRAZY HECTIC SCHEDULE.

It is exhausting and on most days emotionally draining, but it keeps me going. I am motivated more than ever to see things through, and to overcome all obstacles in my way.

I thank the Universe in advance everyday for all the gifts that have yet to arrive.

Here is my letter to the Universe today:

Dear Universe,

Thank you for helping Blaise succeed in school and surpass all the labels that have been placed upon him.

Thank you for helping me figure out how to help Maddock be a calm and happy child.

Thank you for allowing me the freedom to go to Yoga Teacher Training and participate with my whole heart.

Thank you for creating a space for me to provide yoga to the people on the south side of Atlanta.

Thank you for all the readers of my blog that continue to join and read my work.

Thank you for helping me to have a successful OSS fundraiser walk for PWS.

Thank you for my life and the life of my children. I am always grateful to be here on this earth.

I am such a good place right now in my life. I had such a wretched few weeks and I am still completely overjoyed with my life. I am truly at a place where I can take each moment for what it is and then move on.

What has given me so much clarity is really examining all the events in my life. So this past week was an amazing learning experience for me. I gained huge amounts of clarity on my plan of action for my children and myself.

Getting ready for my teacher training is keeping me in great spirits. I am ready to begin this new journey in my life.

I know this post may seem really hippy dippy, but I can’t help it. I am in a (see picture below)

I am back, plan on reading daily blogs from me again starting today.

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. ;(

Feeling Hungry

3 Jan

DO YOU KNOW WHAT IT IS LIKE TO FEEL HUNGRY?

HE DOES!!!!

Today is day 2 of my juice fast. Today is also Blaise’s birthday. I am not going to lie, today was really hard. I was really hungry today. Worse than yesterday. Let’s not forget to add the massive headache and acne breakout in the mix.

Today I really understand what it is like for my son.

Today I understand what it is like to have Prader-Willi Syndrome. I know what it must be like for Blaise when everybody is eating cookies and cake, and hamburgers and fries, and he can’t have any. Or if he does have any it is a teeny tiny amount, while all the other children can eat until they are full.

Today I understand what it is like when the house is filled with smells of food and you are starving, but you can’t eat.

Today I understand what it is like to sit at the table with everybody while they eat a yummy meal, but you can’t eat.

Today I understand what it feels like to have hunger pains that don’t go away, no matter what you do.

Today I understand what it is like to be so hungry that all the rest of your body parts hurt.

There were so many times today that I wanted to eat, that I wanted to give in, but didn’t. I would not let that happen. Today was the most important day of my fast. Today was Blaise’s birthday and so today I honor him by being hungry. Not just a little hungry, but really hungry.

So now I know more than ever that we have to find a cure. I want to release my son from the prison of hunger. I want to free him from pain.

When you are hungry it is all you think about. When you are hungry the hunger pain takes up so much space in your brain. Can you imagine trying to learn in school when you are starving? Can you imagine trying to have fun and play with your friends with a hunger pain gnawing at your insides? Let me tell you, it is really hard.

I know that Blaise has grown up knowing this pain, I know that this is all he knows. For me that is not much comfort. I am dedicated to finding a cure for my son. I will do whatever it takes. I will do everything for him.

If you are reading this and you haven’t eaten dinner yet, don’t. I ask you that one small thing to honor my amazing Blaise on his birthday. Just give up this one meal to know what real hunger feels like. Go to bed hungry tonight, just this once. I promise you it will give you a whole new perspective on my son’s fight.

Through it all he always, always has time for a silly face and a good laugh with mom.

To learn more about PWS please visit:

http://www.fpwr.org

or

http://www.pwsausa.com

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