Thursday, July 21, 2011

The littlest heros.... the siblings

I know I've posted about Holden, Ashton's younger brother many times..... well, Holden is Ashton's wind beneath his wings..... :)

But, have I told you how awesome he is?

<~~~~ That beautiful baby boy, was the single best and most important thing we ever did for Ashton. I mean yes, we had a second child because we wanted one and knew a second child would round out our beautiful family. But what we didn't know at the time, was just how important of a role Holden would play in helping Ashton. We didn't realize just how crucial Ashton's well-being and independence would be and what role Holden would play in that. Never did we realize how good of a therapist Holden would be. A built-in and free therapist, imagine that?! :)

Holden has always been early at meeting his milestones. I mean heck, he came out, 3.5weeks early after a 2.5hour labor! ;) He's been early at everything! hahaha! He started walking around 8-9ish months, started talking shortly after his 1st birthday and he was talking non-stop by the time he was 18months old. Holden knew all shapes, colors, ABCs (upper and lowercase and all sounds) by his 2nd birthday and was singing the Star Spangled Banner and was saying the Pledge of Allegiance by his 3rd birthday and also knew his full name, birthdate and phone number and address.

<~~~~ That is a picture of Ashton and I the summer before Holden was born. I got pregnant the month after this picture was taken. We were still undergoing the diagnostic process for his Autism (meaning, we knew something was up, but didn't have a label yet) and had decided, if I didn't get pregnant by the end of that summer, that we would remain a one-child household. Well, Holden was meant to be, because I found out the day before mine and hubby's birthdays (August 23rd) that I was pregnant. Ashton underwent testing for seizures (MRI, EEG) and genetic screenings and blood tests. Everything came back normal, but we knew something was going on with our precious boy. We found out in November of 2001; Autism. The scarlet letter of developmental delays. He rated on the severe end of the scale, and we were left wondering what that would mean for our sweet boy. We found out in December of 2001 that our new baby would be another boy. While I was sad at the thought of never experiencing having a little girl, I know now, that our second and last little boy was exactly what God had planned for us. In January of 2002, Ashton started school, a preschool class for special ed children. His teacher (Ms. Cindy) was an Angel on Earth (though she may dispute that!). I greatly admired (and still do!) this woman; she has a huge huge heart, has special needs children of her own and yet, was going to school to finish her schooling and was teaching special ed kids. Because of her, Ashton learned incredibly quickly. He quickly picked up on the communication skills that laid the groundwork for us to be able to hear his sweet voice. At first, he used PECS cards and used those for communication. On April 16, 2002, Holden made his grand appearance! Ashton's teachers knew when he didn't come to school that day, that I'd likely had the baby. When Ashton returned to school the next day, we sent in pictures of his new baby brother and he wore his "I'm the big brother" t-shirt! :) What a grand moment for him.

I was fortunate in that I got to stay at home with Holden. Ashton was in school full day when Holden was only 4months old, so he got lots of 1:1 mommy time despite being a second child. We went to playgroups, LLL meetings (LaLecheLeague; it's for breastfeeding mothers), and we were hardly ever home! :) Lots of mommy & Holden time. At this point, Ashton didn't pay much attention to Holden I don't think. He was still very much "in his own world", although I would often get pictures like that one ~~~~ ^. Beautiful, aren't they?

It wasn't until Holden was around a year old, that Ashton became more aware of this little being that had set up residence in our home. Holden was walking already (Ashton didn't walk until he was nearly two-years-old; now known to be because of hypotonia in his upper extremeties) and was talking pretty clearly for being so young. We had moved right around this time and that had set Ashton back quite a little ways. But, what was quickly becoming apparent was, he dearly loved his little brother. So sweet! <3<3<3

As the boys grew older, and over the years..... Holden's personality came to light. He would not be ignored. It's just not in his personality. He also helped Ashton come out of his shell. Due to Holden's outgoing personality, and his precociousness, Ashton was seldom able to withdraw when Holden was around. Holden loved to play and interact and never had any problems adjusting to a special needs brother; Ashton was just who he was meant to be, his big brother. See ^^^ pure idolization of his big brother, and I think it was mutual between the two of them. They would put up from each other, what they would put up from no one else.

and here's some more pics, story will continue afterwards.....
Ashton would have never wore this if
Holden wouldn't of had the same costume!
Trip up to NOVA '07 - LOVED the carousel in the mall
Holden's first day of kindergarten - MY how he grew!
Ashton at the special games for his school

Look at that smile - RUNNIN'!

Fun with friends


Fun with family friends!
(I Promise, no kids were harmed in the taking of this photo! LOL)
Still feelin' that brotherly love <3
One of the first years Ashton REALLY got into Christmas '09
This was also the year Ashton decided to give himself a hair cut! :P
Happy 12th Birthday Ashton and Happy 9th Birthday Holden!

and now we are here today (well okay.... a few weeks ago LOL) ..... :) 

Holden has helped his brother immensely over the years. But, I think what has helped Ashton the most, is Holden being exactly who he is, so that Ashton can become the young man who he is supposed to be. Ashton is now a very verbal and social creature. Almost always happy, and talking non-stop! Ashton now has a pretty engaging personality. You can't talk to him and not smile. He's so funny and comes up with some really cute things to say! Sure, he's not at a twelve-year-old level, and I doubt he'll ever be totally age-appropriate, but he's come such a long ways from where we started. Holden has been the biggest part of that. Holden knows that sometimes, we can't just go out and do fun things, because Ashton just can't always handle that stuff. He's been put on the back burner on many occasions because of Ashton's therapies, school issues, etc. Holden is now coming into his own, now that he's getting older. Holden is very smart, very active, and is quite a talker. He gets very good grades and is well-liked by all of his peers and teachers. He's quite popular at school, as Ashton paved the way for him! As night and day as my boys are, they are both a very special part of our family. Ashton has taught us that slow and steady wins the race, and Holden has taught us that gettin' up and goin' and havin' fun is a good thing too. They're both sweet, loveable and funny as all get out. And the love they have for each other? Unsurmountable. They're best friends and stick up for one another when they think the other is being wronged. Holden has picked good friends, all of whom have accepted Ashton for who he is, not what he has. Ashton is a book-lovin', movie--watchin' fiend while Holden is a video-game playin' and runnin' around actin' crazy goofball. But, at the end of the day... they're both ours. Our sweet boys who are both growing up into incredible young men.

My hope for them is to always remain friends, always look out for one another, and always remember, that blood runs thicker than water. Family is family, and they do for one another. and Thank you for being the two best sons any mom could ever ask for!

Love you BOTH very very much!

The little lion? that's Holden..... in 2006 on the homecoming float for his school

One of my favorite pics of Holden, EVER!
First soccer game - ala Karate Kid! LOL

No idea what the silly faces were for, but I LOVE it!
2nd place in his VERY FIRST wrestling tourney! AWESOME!

Holden took this picture, with my little p&s camera - photographer in the making?

VERY first GOLD MEDAL in wrestling!

Small, but MIGHTY!
he had some anxiety about the tube initially, but then wanted
to keep going back out in it! :) YAY!

I'm always proud of both of my boys' accomplishments, but I try to make sure Holden gets the extra attention he deserves. He's had to give up a lot with having a special needs brother, and has always taken it in stride. He's a very sweet kid, and this post is for him :) I hope you've enjoyed the story and the pictures :) Thanks for letting me share

Have a nice day!

Monday, July 18, 2011

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.

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."
If the link fails to work you can copy, and past it to your browser.
- Kristina Smith Blizzard

Have a nice day!