Never say Goodbye......

"Never say goodbye, because saying

goodbye means going away,

and going away means forgetting."

How true is that quote....

First off I want to say sorry that I've been "away" in the land of blogging. We've had an incredibly busy, but fulfilling summer this year making lots of amazing memories with friends and family. I'm posting this just to kind of give a heads up on what's been going on.

We are blessed beyond measure to have met Marc and his parents, Andrea and Ernie Leber last summer. I don't want this to dwell on the sadness that Marc's departure to Georgia Tech today leaves us with, but I did want to post about some of my own feelings with him leaving.

First off, it's amazing how you never know something or someone is missing from your life, until they've walked in, left their mark on your life and in your heart, and then leave for new experiences. Marc, you are such a person. We didn't know that you were missing from Ashton's life, but we certainly feel it with your departure to Georgia Tech today. 

Marc has been an instrumental person in helping Ashton come out of his shell of Autism. Those who knew Ashton prior to June 16, 2012 can tell you that Ashton is not the same child now as he was back then. Back then he was just coming out of the huge regression that had plagued him for his entire 6th grade year and part of his 7th grade year. He was finally on an upswing behaviorally, but was still falling behind socially and it was heartbreaking. He didn't really seem to care about others, wasn't yet reading facial expressions and emotions and just lacked awareness of others around him. He didn't seem to care about being or having friends. The morning of June 16, 2012 changed his life and little by little over the last 14months, I've seen Ashton come back to life. His amazingly happy-go-lucky personality has come back, he's social and verbal and he loves being around people.

To say that Ashton adores Marc and worships him is a huge understatement. I've never seen Ashton ask for someone with the same longing that he does with Marc. I don't think he quite understands yet what 'Marc being away at college' means but I hope with patience, love and understanding that he'll realize that just because Marc is further away, doesn't mean that he's any less his friend or big brother. Yes, I said it.... Ashton calls Marc his big brother. I've never seen Ashton forge such a close bond with someone as he has with Marc. Ashton loves high 5s and double high 5s, but the smiles that he gives when he gets them from Marc is on a whole different level than when he receives them from someone else. He's just different when Marc is around, and different in a wonderful and beautiful way. I hope that sticks.

Ashton smiles nearly all the time now and when he poses for pictures (you do see his cheesy grin and poses above, right?! :)), he's just relaxed and well, happy. I don't want to lose that super happy part of his personality. Going to high school is a huge transition in and of itself but he's also coming back to our own home community that was sorely lacking in knowledge and compassion when he was at the middle school level. I'm hoping  and have faith that the high school level will be better. Having Marc move away is another big change for him and one that I think may actually be harder for him than changing schools. Maybe I'm over thinking it all. But Ashton's level of social awareness is what scares me. He realizes the dynamics of things around him are changing and he sometimes feeds from that which can be both good and bad. I will take the fact that he's aware of what's going on around him any day over the little boy who for so long lived in his own little, closed off world and wouldn't let anyone in.

Hoping for some peace and and happiness for my boy... that's all I want. For him to be happy, progressing and making new friends. Thank you Marc and family for blessing us with your friendship and love! Andrea and Ernie, if you ever want to borrow a kid, Ashton's ready! ;) You know he loves your comic book collections and just hanging out at your house. He'll even eat you out of house and home, just like he does us here at home! lol :)

Seriously, I'm hoping the best for everyone involved with this transition ..... and to Marc, have a BLAST at GA Tech! :) You should have received your first letter from us upon your arrival :) Best of luck to you in your new adventures and remember, study hard, make lots of new friends and most of all, remember Rule #3: HAVE FUN!!! :) We are excited to see what this new chapter of life brings you and can't wait to be a small part of it. 

Marc, thank you also for allowing Ashton one last chance to hang out with his favorite person doing his most favorite thing ever, swimming at the beach and Michael Phelpsing (a phrase coined by you and Ashton). I'm glad we were all able to give hugs and say "See You Later" with smiles on our faces and remember all of the amazing experiences you two have had together. I know the future will bring new memories, new moments and lots of new experiences for you both and I can't wait. Until we see you again kid! Remember, we are only a letter, call, text or Skype chat away!

And I will leave this post with the "We Will Miss You" movie that I made for Marc. It was an extremely cathartic experience putting this video together, picking songs, what to caption, what to say, etc. You may want to turn your speakers up ALL THE WAY initially as Ashton does some speaking/talking in the very beginning of the video. Below the video is the text for what Ashton said.



Hi Marc. It's me Ashton.

I want to say thank you for being a super awesome best friend and big brother. Being around you makes me happy. You and I have lots of fun together. We race (and you run super fast), we hang out (and laugh and act silly) but most of all, you let me be exactly who I am.

No matter if I'm flapping my hands, saying silly things that make no sense or just kind of staring off into space, you accept what I am and what I do and realize it's just a part of what makes me the super cool guy that I am.

I will do good work in high school and I know you will do good work in college. I will make new friends and so will you. I know we will still talk on Skype and on Facebook and I am already working on my first letter to you. 

I will miss giving you high fives, double high fives and I will miss your big hugs. I will miss racing with you and coming in first. I will miss our random conversations about whatever is on our minds. I will miss just hanging out and being silly. But most of all, I will just miss you.

Thank you for being my super awesome and fun best friend and big brother. I hope I see you soon and I love you. For now, I will say "see you later".

How a stare or an unkind word can hurt further than you can see....

It constantly amazes me at how the world as I know it, is unkind and not made for my special guy. While both of my guys struggle with their difficulties, Ashton just can't pass as "normal" like Holden can and does. Despite Holden's ADHD/anxiety, his meds keep most of his symptoms at bay so for all intents and purposes, he's a completely typical 9-year-old and appears that way. Ok, so well... a small 9-year old ;) He is after all, only 50lbs and 51in tall.

If you see me and my son in the store..... here's what I hope you will not do.

First off, when you see me have him climb into a shopping cart, don't look at me weird. I do this, because Ashton can and does sometimes run. In a place like Walmart or Target where I do a lot of shopping, I need him to be contained. Yes, I know.... he's big (120lbs and nearly 5 foot tall) and looks goofy sitting in the back, but live a day in my life of having to chase him down and I can bet you won't judge me anymore.

**TIP**
Lifting the front part of the cart (where a small child would sit) up from the inside of the cart
will  allow a larger child to climb in instead of having to lift them
into the cart (which I cannot do with Ashton's size)

Secondly, when he flaps and claps ... don't stare. Can you even begin to imagine how this makes him feel? It's his way of processing the sensory overload that he's experiencing. Imagine the sounds, sights and smells of a place like Walmart and magnify it, 100x. That's how he feels! I can guarantee you'd have to do something to help your body calm down. Also, don't assume he's doing it because he's mad or upset, he does indeed flap and clap when he's happy and overly excited too. The vocalizations are different. People (generally) seem to find happy noises more acceptable than upset/angry noises.

Third, if you see or (as the case will usually be) hear him screaming, don't rush to the conclusion that he is some horrible kid that can't control his behavior, or that I'm just enjoying hearing him scream and making you miserable. While yes, he is autistic and he has difficulties with communication and behavior, he still needs to learn to fit into this world. He does very well, most times. But well, we all have our bad days and well, I do the best I can to keep him from screaming and yelling and carrying on. However, sometimes it's just not possible. I do have to get groceries, pick up prescriptions, and get out of the house; just like everybody else. My son also needs to learn these life skills too, he's almost a teenager! Just remember, if you feel miserable because his screaming is bothering you, think about how him and I feel. I do my best to quickly leave the store (and have done so without my purchases too).

Lastly, if you see my son behaving oddly and aren't sure what to say..... don't stare, give weird looks and turn away.

What I hope you will do ......
If you don't know what to say..... just nod your head with a friendly smile, and walk away. However, if you're wanting to make a positive social interaction with my son, speak up and say "Hello, Young Man!" He loves positive interaction and will typically answer back with a "Hello, my name's Ashton!" He gets so excited for positive communications from people. If you see him melting down and screaming and crying, please ask me if I need any help. Don't feel badly if I say no, however. I most times can handle the crying and screaming and do my best to quickly remove my son and myself from the scene. Please know that I sincerely appreciate every kind look, every kind word, or even just moving out of my way if you see me running with a cart and a kid. I hate the stares, so don't. I hate the unkind words, leave them unspoken. But I do appreciate sensitivity. I appreciate kindness. I appreciate understanding. I also appreciate people who can look beyond the situation and notice that this is a child with special needs. I appreciate people who know and can spread awareness.


This post came to light today because I read this note, someone posted on Facebook: A Few Feet, and a World Apart. It spoke to me, and made me feel like maybe I need to get out into the open how sometimes the looks, stares and unkind words that I get out in public, make me feel. I am most certainly not the only one out there. I've copied it below for those that can't read it due to not being on Facebook. Thank you to Kristina for the permission to use this :) You Rock Girl!

I will feel better if I get this off my chest, even though I know the people who will read this are not the people to whom it is addressed...

You and I stand just a few feet, and a world apart.

You are the old lady in the restaurant who gave me a stern look, then elbowed her friends, so they could also stare at my daughter. You shook your heads in open disapproval. In your world, children aren't born 3 and a half months early, and they don't have life threatening strokes, therefore they have absolutely no excuse to be using a bottle at 4 years old. In my world, the fact that my daughter can take anything by mouth is both a miracle, and the result of years of painstaking effort.

You are the irritable man at the Science Center who gave my children a blatant look of disgust when they had trouble staying in their seat during your presentation. In your world, parents are expected to control their children in public, and children have no excuse to behave that way. In my world, my children have ADHD and autism, which makes sitting still very difficult for them, even when they are on medication and are really trying to behave. 

You are the lady in the mall who rolled her eyes at me because my daughter was making too much noise. In your world, parents should teach their children to use their "inside voice." In my world, the fact that my daughter can make any vocalizations at all is really amazing. Her left vocal cord is paralyzed from nerve damaged caused by a chest surgery which was done when she weighed less than 2 pounds. In my world, not all children are capable of understanding the concept of an "inside voice."

You are the neighbor who notices with dismay that my yard doesn't look quite as manicured as it once did. In your world, there is time and energy to put in to things like that. In my world, I am too exhausted to care much about the yard anymore. I have bigger concerns that consume my days and nights, important things like trying to teach my 4 year old how to communicate her basic needs.

-

You are the fair weather friends I once had, the ones who simply evaporated while I struggled for months to cope with having a critically ill child. In your world, friends are only worth having if they are always fun to be around, and aren't likely to need anything from you. In my world, friends don't need to be asked. They can see you need help, and are quick to offer it.

You are the checkout lady in the grocery store who said to me, "I am SO glad that isn't my kid," not realizing that it was my own son you were commenting to me about. He was having a meltdown, and my husband was taking him out of the store, while I checked out as quickly as I possibly could. In your world, children with special needs are a curse. You pity them, rather than value them as people. With your eyes, you see only their deficits. In my world, special needs children are a blessing beyond measure. They teach us invaluable lessons in gratitude, patience, faith, and the value of life. With my eyes, I can see the miracles you sadly fail to see.   

You are all the people who smugly pass judgment on us. I know most of you do so without knowing all the facts. I realize you measure our behaviors by the only rules that you know, the rules that govern your world. You can not know how deeply your thoughtless responses cut. On most days, I extend to you a courtesy you fail to give us. I silently pardon, and excuse your behavior. Because you do not live in my world, I know you can not begin to fathom how hard my children work to try to meet the expectations of your world, and that they are doing the best they can despite their challenges.

I both forgive, and sometimes envy you for your ignorance. 

...and so ends the rant....with my apologies.

_

To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents "Loving a Miracle - Special Parents Supporting Each Other."

https://www.facebook.com/groups/325329864348?ap=1

If the link fails to work you can copy, and past it to your browser.

- Kristina Smith Blizzard

Have a nice day!