A Tale of Two Mothers

This story was posted about on a blog that I follow and I want for others to understand what it is like...while Shelby is not autistic...she does have the sensory processing issues that can lead to the same looks, stares and NASTY comments when we are out in public... so please... take the time to read a tale of two mothers...

A Tale of Two Mothers
By Lisa Belkin
Mary P. Jones is the mother of two children, one of whom has been diagnosed with autism. She writes about helping her boy navigate through his challenges on her blog, A Room of Mama’s Own, and she does so anonymously (Mary Jones is her pseudonym) to protect her son (and the rest of her family, as you will see if you visit her blog.) Her goal is to shield the boy from prying eyes, not subject him to them. Because, as she writes in today’s guest blog, Mary knows a lot more than she would like about the stares of strangers.
A TALE OF TWO MOTHERSBy MARY P. JONES
I.
A mother and her son are in line at a grocery store. They boy looks like he’s about nine or ten. The mother looks a little tense as the boy starts to fidget in line. At this age he really should be able to stand still. And watch where he’s going. He almost bumped the person behind him. His mother does nothing.
“When are we going?” he asks.
“In about two minutes. We’re almost done, buddy,” she says.
“No, not about. Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot.
Again, his mother does nothing to make him stop his rude behavior.
Fortunately, the cashier has finished ringing up the groceries and now the boy starts hopping up and down in place as the mother reaches into her purse for her credit card. He practically snatches the card from her and then after he swipes it, he starts shouting at her, “No! No! You do it my way!” She leans down and whispers something to him and he stops yelling, but he still hops up and down again, glaring at her and pulling on her and making those grunting noises rude teenagers do when they’re disgusted with you. No doubt she’s told him she’ll give him the candy she bought if he keeps quiet: rewarding and reinforcing his unacceptable behavior as bad parents do.
The cashier hands her the receipt and says, “Thank you, Mrs. Jones,” and the boy screams at the cashier as they leave, “No! You’re terrible!” The mother leaves without a word as the next customer in line rolls her eyes sympathetically at the cashier.
II.
Today, I’m going to take my son Austen to the grocery store with me. It’s school break, and we need milk, the only thing Austen drinks.
Austen is autistic, which can make these trips hard for him. As a result, I schedule the bulk of my grocery shopping for times when he is in school or being cared for by someone else. However, sometimes I plan short trips like this one to help him get used to grocery stores (a skill he’ll need if he is going to live independently) or, like today, because we need some essential item at a time when I have no childcare options for him. When he does come along I make every effort to keep the visits to what we can both handle, so that they remain a positive experience for him.
To prepare for the trip, I’ve made sure that he is well fed, and I’ve arranged for his sister to play at her friend’s house so that I can focus on him. Since he thrives on routine and predictability, on sameness and scripts, I’ve reviewed what is going to happen when we’re in the store, so he knows what to expect. I’m also keeping the visit short; we’re going to get only what we need and then leave.
As part of his autism, Austen has sensory integration issues, which means that the way that his brain processes the information from his senses can turn a whisper into a scream or a tickle into a burn. Because of this, so much that goes unnoticed by others on these outings is painful to him: the store’s softly flickering fluorescent lights can look like a strobe and the incessant piped in music can sound like a rock concert, the aisles can seem breathlessly crowded with people, and the sight and smell of all these different foods can be nauseating; his own diet is self-limited to just a handful of items.
In spite of this, he does really well as we walk through the store. He stays close to me and doesn’t run off. He even talks about some of the items he sees on the shelves and points out some candy that he knows his sister likes, so we add it to the cart to bring home to her as a treat. He wouldn’t eat the candy himself even you bribed him with an XBox, so it’s wonderful that he thought of her. In fact, there are some who posit that autistics have no “theory of mind” at all — that they are incapable of realizing that others think differently. For Austen, it seems to be difficult, but not impossible, to see things from someone else’s point of view, and I celebrate it when he does.
As we pass through the produce section on our way out, a clerk says ‘hi’ and asks a question about the cartoon character on Austen’s t-shirt; they have a brief, polite conversation, although Austen has to pause a bit to gather his thoughts between sentences. At age two, Austen was not speaking at all and doctors first began to tell us that it was possible he was autistic. It took intensive speech therapy in his preschool years and the work of several loving and dedicated special education teachers to get him to the point where he can have this conversation today. Austen is tall for his age and the clerk is surprised to learn he’s only seven.
He’s handling this whole trip really well. All the work we’ve been doing to help him get comfortable is paying off. “You’re doing such an awesome job of helping me today, buddy,” I say.
All we have left to do is pay, but I get tense when I see there’s just one register open and the cashier is engaged in a complicated transaction ahead of us. We do the best we can, but even after a short, positive visit, waiting in line is hard. I think (hope) we can make it through the line without a meltdown. If we leave now, we’ll have to come back again later to get what we came for and the second trip is unlikely to go this well. After a little while, Austen starts circling me, which is what he does when he’s tired and anxious. He’s not hurting anyone by doing it, and he’s keeping himself calm. So, I breathe and hope the line moves quickly, since I can tell he’s used up almost all of his resources to make it this far. If we were finishing up and walking to the car now, as I had expected, the trip would have been perfect for everyone. I try to remind myself that sometimes, in spite of all my best planning, life happens.
At last he rolls his head back and sighs, “When are we going?”
“In about two minutes. We’re almost done, buddy,” I say. Oops, I’m tired and anxious too now, and I slip. This is the wrong time to say “about.” That’s a trigger word. Austen craves precision. We can work on estimates and inexactness like this at home, but the grocery store is the wrong place for it: just as running across a busy freeway would be the wrong time to stop and work on tying your shoe.
He also — as is the case in so much of the obsessive compulsive behavior that is common with autism — reacts to anxiety by becoming even more rigid and insistent on rules and routine in order to quell his rising panic. The more chaotic and unstable he feels his world becoming, the more he clings to the solidity and familiarity of the rules he’s created to soothe himself. That means the very public situations in which he’s expected to be most flexible are the very situations in which he most desperately wants the world to conform to his rules. Predictably, he protests my vagueness.
“No, not ‘about.’ Zero minutes! I want to go now. Right now! Right! Now!” he says and stomps his foot. Damn, he’s really had more than he can handle already. I didn’t think we’d have to wait so long in line. He’s been working so hard to make it this far, and I know he’ll feel better once he’s back in the quiet, familiar car away from the people and the lights and a whole store full of nauseating, offensive foods.
Fortunately, we’re at the front of the line by now and the cashier rings up our groceries quickly. Obsessive interests are another hallmark of autism, and a longstanding passion for numbers is one of Austen’s. He loves to work the ATM/credit machine, so his participation in this process is a way to end trips on a positive note. After some practice, we’ve gotten pretty smooth with it. He likes to push in the PIN numbers, and has finally reached a point where he no longer feels compelled to say my PIN out loud as he types it. We only run into problems when we have to use the card as credit, because he doesn’t like to see my signature. It’s incomprehensible and extremely upsetting to him that the bank wants me to scribble instead of printing my name in block letters like at school. Everything goes well at first, he takes the card eagerly, swipes it just right and gets ready to enter the PIN, but the cashier makes an error and we have to reprocess the transaction as credit.
Austen, overwhelmed by the wait, anxious that things aren’t going as planned and distraught at the thought that I’m going to have to sign rather than punch in a PIN, starts shouting, “No! No! You do it my way!” I lean down and remind him that when he gets upset in these situations, he’s supposed to signal me and let out his anxiety by squeezing my hand really hard instead of yelling. So, he hops up and down again, frowning and grunting slightly with the effort of squeezing my hand tightly.
At last, we’re almost finished. The cashier hands me the receipt and says, “Thank you, Mrs. Jones,” and I do my best to rush us out. Austen, exhausted and triggered by the formal use of my last name (“only teachers are called Mrs. and you’re not a teacher”) is practically in tears as we move toward the door. Unable to soothe himself with the hand squeezing any longer, he screams at the cashier as we walk away, “No! You’re terrible!” I smile weakly and shrug an apology from near the door.
All in all, it was a very successful trip, and once we’re clear of the store, I say, “I know that was really hard, but we’re all done now. You did great this time, buddy, even better than last time. High five!”

Change of pace...

Instead of having a Not me Monday... I am going to have a "I am thankful Monday"....

• I am thankful that the flooding in my area seems to have subsided for now...we do still have the risks because of the current blizzard (16+ inches of snow and snow that has NOT STOPPED for over 28 hours), but we are safe, warm and dry... who could ask for more
• I am thankful that our "niece" (technically Chad's cousin's daughter, but isn't it just easier to say niece) is doing AMAZING for being a 24 week preemie...Princess Ella Jo is being a very 'boring' resident at the U of M Children's Hospital-Riverside...HEY boring is AWESOME in the NICU
• I am thankful for my wonderful children...even on days like today when I felt that I was the only one who could hear my own voice bouncing off the walls, I am thankful that I have these amazing little miracles who call me Mom... I am so completely blessed
• I am thankful that with the economy the way that it is that my husband has a job, we have food on the table and even a bit extra for some fun things...
• I am thankful for my amazing support group of friends, family and wonderful blog readers who offer such awesome support and friendship.
• I am thankful that my grandfather's treatments seem to be working and his throat cancer is being healed.

Honestly...there is so much more that I am thankful for, but I certainly do not want to sound like I am boasting...

I also have some prayer requests:

• Baby Stellan http://www.mycharmingkids.net/ has been in the hospital for going on 10 days with some heart issues... please pray for his family
• The entire Riggs Family http://www.riggsfamilyblog.com/, their is so much on this wonderful family's plate but yet their faith in God and their strenght in their family unit never falters...
• Continues prayers for our 'niece' and her parents during this journey of life in the NICU and beyond...
• Prayers for those who have been effected by the flooding and horrible weather conditions in North Dakota and Upper Mid-West...
• Praise for all the amazing people who stepped up and showed what it meant to be a true North Dakotan and helped so many people during our flooding crisis.
• prayers for my grandfather who is battling throat cancer...his blood levels have not yet returned to a safe level so he can continue with his treatments.
• Prayers for all our service men and women who put their lives on the line every day so that we may sleep fitfully in our beds each night...
• and last but not least...some unspoken prayers for others...

Please remember to be thankful for what you have...we are so lucky without even realizing it

MAJOR PRAYER REQUESTS:

I have several prayer requests right now:

First and foremost, our cousin Ryan and his wife delivered their daughter last night. Baby Ella Jo was born weighing 1 lbs 3 ozs at roughly 24 weeks gestation. Please add this family to your prayers... from what we told Baby Ella is holding her own for now. Please pray for a quick recovery from the surgery for Taryn. This is not going to be an easy road for them, but with God's grace and lots of prayers it should make it a bit easier.

Secondly, the Bismarck area is suffering greatly from flooding. My aunt, cousin and uncle and his entire family have been evacuted from their homes (all in different parts of the south side of Bismarck). We have spent the better part of the morning moving belongings and helping in any way that we can.

Heavenly Father-
With you grace and strength please surround us in our struggles and give us hope. Keep baby Ella, Ryan and Taryn in your arms during this journey for them. Please help the residents of our area to be able to stay strong and put their trust in you.
Amen...

The Flood of 2009

This picture was taken off the patio of a river front bar. If you look towards the back of the picture you will see the Expressway bridge ...you can also see the water line mear feet from the bottom of the bridge. This water has not been this high in YEARS...

I feel horrible for the people in our area who have been evacuated from their homes and we went and helped fill sandbags and such, but at this point there really isn't much we can do but pray.

Part of me can't help but think that this is God's wake up call for us all... alot of these homes were built on the previous riverbed of the Missouri River here in Bismarck, but because of the budding building in the area they have held water back for years so that they could build on the property....

I pray for these families and I mourn their losses with them... please say a little prayer for everyone.

Only...

in North Dakota will you have a MAJOR thunderstorm and a blizzard in the same day...

Please pray for several families in my area. We are having some serious water issues with the record snowfalls and now the melting and more snow again. Several homes in our town are already suffering major damage and there is more to come.

I really think that this is going to be worse than the flood of 1997.... So many families need prayers right now.