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!
<~~~~ 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?! :)
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.
