Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store

Just had to copy and share this...I'm sure every mom or dad can relate to this story but more so parents of special needs children because the OFF button is so much harder to turn OFF!!!
  
Oh I could have used this today at Rite Aid when Sam had a huge meltdown...'I go home..no I get pops...I go home....screaming in between! One of the pharmacy techs came to tell him it was ok and he said 'go go go' as he put his hand on her to push away
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Dear Shopper,


Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.
That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.

This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.   So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.
My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  There IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it’s loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows?  Maybe I’ll get to see the one hidden behind yours.   Found this story on a very helpful blog at:  
http://flappinessis.com/

We have an iPad!

Sam was gifted an ipad today from Gary James of www.a4cwsn.com.  We were the recipients of the 50 states, 50 ipads to 50 children campaign!!!   Gary James came to our house early in the morning to hand deliver the ipad.  We also had the RI recipients join us to help save Gary some traveling time.  It was nice to also meet Rebekah, Joshuah, Laura and Karl Tirrell!

I spend ALOT of time on the A4 facebook page, probably too much time but there are so many great resources there for apps, education, therapy and most importantly MANY other moms of kids just like Sam.  It's a family, a community, a place to go where people GET it!!!!   Thank you to Gary James for taking his vision that every special needs kid should have the resources to help them therapeutically, in school, at home and yes, to get an ipad.   You can check out the group at http://www.facebook.com/a4cwsn.  Just don't be scared if you go there one day and see either funny stories about chocolate milk, Gary's pet sticks or some crazy drama going on!  It's all good- just come back another day to join in on the fun!!!  

Lastly I have to say that Gary is an amazing man with a heart of gold!  WHO do you know that drives 20,000 miles across the US to hand deliver ipads?   He spent weeks away from his wife and 4 young kids (2 of who are also special needs).  Gary has given us and many other families the gift of an everlasting friendship and a voice for our child with the help of the ipad.    Thankfully at the same time Sam has also BLOSSOMED with language!   We are truly blessed!!!

Slacking with food trials

Sam's last scope in March was clear which means he had no eosinophils in his esophagus from the last bunch of foods we had trialed;  turkey, rice flour and rice chips and strawberries.  Met with his GI doc, allergist and Nutritionist on 3/28.  Was probably the shortest appt. and we all agreed to trial corn, beans, 1 more fruit and beef next.

Well it's the beginning of May and we haven't done much. He ate some beans with white rice one night but then vomited, maybe texture of the rice?    Then he vomited 4 times during 1 week and we weren't sure what was going on.   Maybe seaonsal allergies or a virus?  It's always a guessing game.  I want to make some corn bread, muffins and pancakes over this next week unless we try hamburger with him.  Will see. The last few days he's been very hungry and wanting more formula.  He's had 4-8 ozs. more a day and has wanted more food too.  Maybe a growth spurt or he needs more food.  I know I shouldn't worry but I do worry a little bit when he drinks more formula consistently.  I'd rather him eat more food and a variety so I really need to work on that.

School-   Sam started full day preschool on March 30th.  He loves "stool" as he says!   He's also just started saying "more" besides just signing it.  It's so cute the way he says it!   I have to keep reminding him though every time he signs it to say "more".   He's learned so much from school already. He comes home and takes off his jacket and wants to hang it up like they do at school.  He sits down and tries to take his shoes off and will put them back on but on the wrong feet.  He is using a fork now most of the time.  I was working on that with him but he just started doing it at home this week.  Every day when we get home from school I go over the paper that is sent home with him to see what he did at school.  Obviously he can't tell me what he did so I love that they have this detailed sheet where they circle things or write in what they do.   I ask him questions about his day and he will either shake his head and smiles yes or say "noooo" even though I know he did that certain thing.   I think he's being silly sometimes with all the "no's" but other times I'm not so sure.   Anyways he goes to school M-F from 9-2 and gets all of his therapy services during those times.  I'm thinking he may need additional speech and ABA therapy outside of school.  We will be meeting with the ABA therapist again on 5/19 to go over how he is doing in school and what else he needs at home or in the community.   We've had some tough days this past week.  He's been communicating more with words and showing us what he wants but at the same time his "episodes" as I call them have gotten worse again with getting very upset and for a good 45 mins.  Again these aren't your regular 3 year old tantrums.  Don't even feel like getting into them right now but it's not fun.   I'm tired and warn out every night and that's still with him going to school for the 5 hours a day.   One day we'll get a nice vacation or a day off but for now I'm happy to still be home and here for him when he needs me!

We've been putting a lot of work into his EOS fundraiser on 5/19. It should be a great turnout and I can't wait!!

Thanks for reading and trying to keep up!

6th scope

Have ALOT to update but for now...Sam had his 6th scope on Monday, 3/7 at MGH Boston.   I have to say I was very impressed how Sam did before the scope.  I actually went in with Steve this time to the procedure room and helped with putting him to sleep.   It was tough but Steve said MUCH better than last time!   We laid him back first to put the mask on which he ended up pulling off at one point (strong bugger)!   Finally we all got quiet and I sang twinkle twinkle as he went out.   He slept for a WHILE afterwards and woke up looking around followed by getting very upset.  The nurse said this is actually very common with most kids until they are older and there's not much else we can do about it.  He almost pulled the IV out and we finally just strapped him into the stroller and booked it out of there!   Once we got the car moving he calmed down.  He vomited a few times after drinking his formula and juice but was fine afterwards and napped 2 hours.

LOVE LOVE LOVE his GI doc and love that he does the scope every single time!   We told him how he's hardly been eating so we shall see what the biopsies say.  Probably won't know til Friday the results.   I have a feeling they will be clear and this is just a phase he's going through with food.  We shall see!

Thanks for listening and for your continued support!

Will update another time about changes coming up with Sam turning 3 on March 29th!    He will be starting FULL day preschool through our town with services for speech, occupational therapy and ABA (applied behavioral analysis)!  yikes!!  He's not a baby anymore but will always be my baby!!  xo