The Pain I Feel Now, Is Proof of How Much Love We Shared; A Daughters Journey

I've passed through the "Is this real" phase, and the frantic, intense phase of making sure her memorial was one she would show up for. Now heading out of the "Did I miss anything phase, was there anything else I should have done?", and seems in the quiet I have now reconnected to my heart - which in some ways was on pause  because the grief was too much - and I'm in the "Oh my gosh I won't ever see or hear her again phase" and I just want to roll up in ball as I try to come to terms with that reality.  I think this is the hardest".

I was so blessed to have her, and that emotion is not lost on me. But my Mom, was the only constant in my entire life. She was the only one who I knew would always be there. The one who loved me no matter what I did. The one who said she was proud of me, and the one who would just silently take my hand, hold it, and just say "Love you". This is a loss like no other. There is not another person in this world who can be your mom, and I had a great one for me.  She was a very special gift, and I guess I've known that always.

Grandma Gone, Shadow Gone Grief from an Autism Perspective

In ten days we lost our beloved dog and my mom, who lived with us. Nick just said "Shadow gone, Grandma gone, ahhhh" and just looked sad. That was it. 

Too much in such a sort time. Hard. 

When is a Milestone, not a Milestone? When Your Child With Autism Turns 18...kinda empty.

Nick turns 18 sitting out for Duck Pizza and
Dr. Seuss Books!!!

Nick turned 18 today and it was just another birthday.  Not a bad birthday, we had fun and he finally got to eat the Duck Pizza he's been wanting for years!  It was just void of the excitement and rituals that accompany coming of age for typical teens; graduation, prom, ditch day, grad night, college tours, summer jobs, moving out, the ability to join the armed forces without your parents permission, cars and so on.  Yep, all the things we take for granted never happened. And for all my positivity and acceptance, I still feel a loss  of some very special moments this parent imagined.  

As the same time, I wasn't left out of the coming of age rituals altogether. Our ritual consisted of mind boggling legal realities and paperwork because he's a "legal adult" now. I can no longer make decisions for him - without the documents that give me permission, from IEP's to medical authorizations - just because I'm his mom and the one who cares for him. It's a weird moment in so many ways especially since nothing has changed. He's an adult who didn't go through any rituals that said you're an adult now, you're ready to leave the nest, it's time to spread your wings little birdy! Nope, he only added a year, and yes for that I am grateful :)  

Remains in East River, N.Y., may be those of missing autistic boy, Avonte Oquendo

Avonte I pray this is not you. 

I don't know what I am most, sad or scared for all of our children in this crazy world. You all know I've been going on about wandering and my concerns for weeks, praying for parents who have suffered through this tragedy and praying that no more families have to endure that kind of pain. This is a crisis for all of us and we have to make this world a better place for our kids. 

I know each of our passion to make this world a better place makes a difference. I am so grateful for a few people I recently met who listened to my fear for our kids and did something about it: The National Center for Missing and Exploited Children and their marketing guru Debbie Asrate. I met Debbie in DC a few months ago at the Congressional Black Caucus where I found myself going on and on about my concerns. Debbie - a virtual stranger to the world of autism - was so touched by the what it means for a child with autism to wander, she took action. Four weeks later I was asked to produce a PSA to help bring attention to the issue and what to do if you see a child wandering.  That's what I call a miracle! Something got done just because, one person opened her mouth and somebody else cared.  I know Avonte's story has touched a lot of people and increased awareness of the problem, but I've heard very little on the public stage about solutions.  Right now all I can think about is praying for Avonte's family and wondering how each one of us, just by being ourselves, can do something to make this a safer world for our kids.   

It's an amazing PSA and when it's complete I'm going to ask everyone for help to get as many eyes on it as possible. We can make a difference, we have to. 

News for missing autistic boy in new york

ABC ews

1. 
   

   Police Investigate Whether Remains Are Linked toMissing Boy With Autism

   New York Times ‎- 4 hours ago

   The New York Police Department investigating the discovery of ... in the search for her missing 14-year-old son, a boy with severe autismwho ...

Autism Compared to Any Other Childhood Illness, A Perspective.

Wow, someone just asked me if it's different to have a kid with autism, than a kid with any other illness. Here are my thoughts in the order they appeared in my brain.

The bad news

• They are all awful. 
• Most illness's,at least it seems to me, the hardest part is dealing with what people tell you and living with what you know. 
• With Autism, the hardest part is dealing with what people tell you living what nobody tells you and all that you can't know.
• Developmental disabilities are life long. They begin they are constant and they never end. 
• When I think of  living with autism I see life in the fun house, or the house of mirrors. Scary things pop up all the time from all around you. You never really know where you are, or where any path will take you but you cannot stand still you have to move, somewhere.

The good news
It doesn't end, autism is not a fatal. We get to keep our kids.
Raising a child with autism is the same as raising any other child, just different.

The Good and/or the Bad News
Autism never lets up. The constant nature of living with autism will really show you who you are.

The Best Thanksgiving Post Ever! When your life changes in an instant, who will you be.

This young man's attitude of gratitude puts life in perspective!

Pictures of  his motorcycle from the Police Report

A dear friend who's family had one heck of a year, shared her son's  Facebook post with me and I had to share it with all of you. It's not just any post, it's a must read inspirational post written by a courageous young man, Xander. Xanders life was changed last year in a motorcycle accident.

 

In Xander's words....

On Election Day

“It’s been a beastly year.” Every time I go to the doctor, they ask me if I'm depressed. I kinda laugh and say "no" and think to myself, why would I be? Then I think why am I not? I lost everything I care about.  Skating, snowboarding, my jobs, my girl friend. I lost my life, so why am I not sad?  Before the accident, I got to work in my dream store, I got paid to hang out with models in hot tubs and take their pictures, I learned how to tre flip, I got to skate the Berrics, I skated the marathon! I got to ride Mammoth when they were hit with 18 feet of powder, I got to drive a convertible r8. I turned 12! When I was 7 I thought 12 year old's were old as x*%!!. I bought a car, I bought a Mac, I bought Nikes! I never smoked, I fell in love, I learned how to develop and print film, I climbed the x*%ing Great Wall of China. I touched the Hollywood sign! Even before the accident, people asked me how I was never sad, never depressed. I got to do things I never imagined, I loved life, I was living the dream. I don't care what I didn't do, or what I can't do now, because at 20 years old, I was so happy with my life, so satisfied, like soooo stoked. They thought I wasn't going to make it for two days after the accident, but I did. Then they told me what I wouldn't be able to do, but they didn't say anything about me bungee jumping, or chest pressing 300 pounds, or doing pull ups on a streetlight, or meeting some of the sickest people ever. It’s been a year, a horrible year, but I'm still alive, still happier than everyone I know. If you're depressed or sad or bored, or even if you're not, go and do something that will change your life, something you have always dreamed of, something you never imagined happening. Who knows if you'll have the chance to do it again. "If you have the opportunity to play this game called life, you have to appreciate every moment. A lot of people don't appreciate their moment until it's passed." ~ Kanye. Appreciate it all, life's dope.
                                                                        *****

Wow! Happy Thanksgiving Xander, Cheryl, Robert and Zavier you're all amazing. 
Hugs,
Donna

Will Reality TV get a little more "Real" now that a Housewife's son has been diagnosed with autism? 

Having a child diagnosed with any illness or disability is a reality I do not wish on anyone. At the same time, stuff happens to all of us and none of us are defined by what happens, rather how we handle what happens. I have a feeling this mom will not only hang tough and tackle the hand dealt her family, she'll also find a way to make a difference in the world of children and families impacted by autism.   Stay strong Laurita! 

Real Housewives of New Jersey's Jacqueline Laurita Has Son With Autism

Kropa/Getty Images

It's a good thing Jacqueline Laurita is such a loving mom.

The Real Housewives of New Jersey star recently revealed to People that her 3-year-old son Nicholas has autism.

The toddler's speech and motor skills began to regress at about 18 months of age. "We had no idea what was going on," Jacqueline, also mom to 21-year-old Ashlee and 10-year-old C.J., says.

Amanda Peet apologizes (sorta) for offending parents of autistic children

"I worry about him being independent when he's older," she says. "I spend all my time researching what we can do for him."

Her husband, Chris, tells the mag they "didn't want to believe it was true" that Nicholas suffered from autism. "You never want to think your child isn't perfectly healthy."

Jacqueline is already working as an advocate for autism awareness and treatment. She'shosting a benefit Sept. 20 to benefit Autism Speaks.

Sylvester Stallone, an Advocate for Special Needs Children, Loses his Son

Sylvester Stallone and John Travolta had the obvious in common, both are mega superstars with children. But they shared a more important and lesser known connection, parents to young men with autism and now both are men who suddenly and tragically lost a son.  I believe the journey of raising a special needs child makes you stronger.  The Travolta’s live a very private life and choose to not publicly talk about their son Jett’s ASD. I never had the opportunity to meet them personally, but as a parent of a son with autism, I felt a connection to them, and their loss was felt through out the autism community around the world . When Jett died I prayed their inner strength - a gift I imagined they got in part from Jett - would help them cope with their loss.

The Stallones, Sly and Sasha made a different choice; they talked openly about their son Seargeoh’s diagnosis and their experience. Their journey touched me, as they were the first celebrity family I heard tell their very personal story about having a child with autism. When my son was diagnosed, their example inspired me to be share, which in turn made me stronger.  Sylvester Stallone was an advocate for children with special needs and he wanted to help other families. In 2005 he narrated a wonderful documentary and educational video “A Child with Special Needs” produced by Rob Reiner, to help families cope with the diagnosis. When I was asked to participate in this special video I was honored, because their family helped my family. I was thrilled to have even the tiniest chance to give back.  

 

All of us who share the part of the Stallone’s journey that includes raising a child with autism, know they’re strong. I hope they know they are in the prayers of countless families and the love, compassion, strength and support they have given so generously to other parents and families during their times of unimaginable hardship is flowing back to them now, 7 X 70.  

 

Sly's Silent son. http://www.people.com/people/archive/article/0,,20090891,00.html

http://www.amazon.com/Child-Special-Needs-Sylvester-Stallone/dp/B000EBFW0I

Unspoken Words: When Shame brings Perspective & Renewed Gratitude

This autism journey never stops lifting me up. Once again, I unknowingly moved through my sadness to a place better than I had ever been before.

Shame:
In the 10 years since Nicky's diagnosis family and friends have lost loved ones, sisters, brothers, cousins, aunts, fathers, mothers, husbands, parents and even children. Hidden beneath my deep and genuine sadness for their loss, was a silent voice that felt they were better off than I was. As painful as their loss was, a part of me thought; at least it was over, they would recover, move on, get stronger, reach acceptance and go on to be happy again. On the other hand, I didn't see that for me.

My loss, the loss of my son's future, the loss of typical life expectations and joys that all parents expect to have as their children grow; revisit me over and over with every milestone, we so easily take for granted.  I thought, he's alive but we're not living the "normal" life we expected or he deserved. Everything from play-dates, dating, going to parties or college, getting his heart broken, going to the prom, fun memories of childhood, having "the talk", planning his marriage, becoming a grand parent,  are no longer experiences to anticipate they're only messengers of repeating grief.

Perspective:
This thought lived buried in the back of my mind as having some truth until Nicky had his first Grand Mal seizure, after which his little body laid totally still and I thought he was dead. In that inconceivable moment the choice between living with autism or NOT, didn't exist. I only wanted Nicky to be here. The notion that I would go on, get stronger, be happy again  was born out of grief not reality.  My family, friends who have lost a loved one are not better off, and I'm ashamed of my misguided conclusion. In my pain I lost touch with all I had to be grateful for, making it possible for me to compare my pain to a loss, I had not suffered!

Gratitude:
Nicky for all his challenges by the grace of God is here and I'm here. I get to see him every day. Clearly not seeing him - no matter what loses we suffer, what sacrifices we make, what crappy stuff living with autism may dish out one day after another - it would not be better. We have the possibility of tomorrow.

No, is not the life I expected, and I wonder who's life is?  There are challenges that I could have never imagined, and thats just "What is". So now with a renewed determination I thank God that he's here. I thank God for all the joy he brings to me and others. I thank God for the better person he is forcing me to become.  I thank God for giving me enough love to share,  and the strength to help my son. I thank God for every minute he let's us share and I intend to grab the most of them and I apologize for thinking I understood, when I did not.

Grief the Gift that Keeps on Giving

Grief the Gift that Keeps on Giving

I have been going to holiday programs for the past 13 years for Evyn and Nicholas. Last week I went to the annual Christmas program at Nicky’s elementary school. I was just one of many proud parents crushed into a room to see the program complete with paper reindeer antlers and kiddy craft decorations and presents for teachers. I always cry a little. At Evyn’s programs I cried the kind of tears you cry at a wedding. At Nicky’s I cry those and tears that sneak up from my stomach, raw emotion old pain.

This is Nicky’s last year at elementary school and this will his first time on stage without an aid. I’m feeling deeply proud that my guy is part of the program. But that’s not the only feeling I’m experiencing. As I watch the other kids file in and perform there is a big excited smile on my face and I’m sad too. It’s in these moments, standing next to all the other kids his age that I cannot deny or minimize his disability. In these moments, standing right next to so many of his peers his difference’s seem so BIG. My mind races. I begin thinking about what he can’t do and I even imagine which child, which personality he might have if he didn’t have autism. Would he be a quiet kid, outgoing, cool, shy or funny. Would he sing loud, or just blend in with the group, would he be a popular kid, would he like sports?. Would he be excited to be in the program, excited to sing all the songs and even maybe nervous before the show began? Would he be like the kid who seems so popular? Then my stomach rolls into a knot and tears explode from my eyes and I’m sad for him, sad for me, I feel ashamed of myself for what I’m thinking. Then I stop, recognizing what is happening (because I have been here so many times) and I give myself a bonk on the head and say “Snap out of It!!”. There is nothing in sadness, but sadness. Focus on all that he does have, all that he can do and stop making up stories. He has a wonderful personality, he is clever and funny and loving. He is strong and he has his legs that got him on the stage and how do I know for sure that he isn’t feeling excited about being in the show. I let my grief go.

It’s been 8 years of shows with Nicky since preschool, and hundreds of hours of playgrounds and party’s and the grief is still not gone. The grief from thinking about how things might have been, things that I just assumed would be a part of my sons life, the loss of what I never really knew the constant death of expectations. It visits me as every age appropriate “Milestone” unfolds in and around Nicky’s life. The biggest difference now, is that I know my feelings are normal and they won’t ever entirely go away, and I don’t expect them to. I’ve learned not to pretend they don’t exist or to feel like a failure for having them. Now I can I feel them, and I can let them go.

Autism Sucks

Autism sucks. Tonight I was watching Autism the Musical. I'm glad for these familes, I'm thankful for the women who gave so much and I'm sure that the documentary will have it's version of a happy ending. But I can't watch anymore. It’s a little too much reality for me. 

The edited down version of hundreds of hours of families pain and frustration condensed to reveal the most painful and insightful moments. A picture wisely designed to impact the people who don’t understand "Autism" by giving them a real peak into the most difficult and saddest parts our lives.

But, I do understand, I live the life they are showing and it’s a total emotional over load for me. Watching ASD kids who are verbal talking about bullies and ASD kids who non-verbal trying to communicate complete with physical melt downs and violent behavior, hurts. Watching parents talking about divorce, parents talking about depression, parents talking about how it will never be okay for their children until people value people with autism and parents talking about wishing they die before their children, parents filled with raw emotion that had no place to go so it escapes when ever there is an opportunity. 

I am all of them. They are all part of me and it’s too hard to watch.