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Good Sunday Morning!!
Up and at it early today, even though Molly has a 4 day weekend for President's day....because there was a problem with the cats. There was a 20 pound bag of cat food in the mud porch, but they were all by the dish LOOKING at me, one sitting on the storage container.
All were empty....which normally wouldn't be a huge problem, but we have our first snow storm moving in for the season. Yep, February 15, and we may get our first snow. (bummer)
So, i boogie out to walmart (was there yesterday stocking up, grrrr) to grab yet another bag of food. (who leaves an empty bag in the mud porch anyway? more irritating than up toilet seats)
Walmart's parking lot looks like the night before deer season's opening day. It's early Sunday morning (usually the best time to shop) but the OMG!! IT'S GONNA SNOW crowd is out enforce. Had to laugh because i heard someone say, "0-12 inches" with laughter because the storm totals have changed daily. I'm sill hoping for the zero total.
I got out of there in a hurry, pulled up to the house, and miss molly was waiting for me in the picture window. I was happy that she opened the door for me, as i was doing the "as many bags as i can possibly handle" trip from the car to the house (yes, the mob mentality of snow prep got to me)
Then? I noticed something ominous (cue "Jaws" music) She's not leaving the front door...she's waiting...waiting ....ohhhhhhh no. She's expecting a bag from McD's
Her love of McDonald's falls into the "weird" part of Autism. She no longer eats the beloved food (thank heavens) BUT, you had better be bringing it back with you if you go to town. We confirmed the phenomena at the bowling alley. She got a bowl of nachos, and carried it around like a prized possession, grinning big. She brought it home and displayed it on a pedestal, and i had to throw it out after she went to school, as she wasn't going to let it go willingly. No, she never ate one nacho.
Beginning meltdown countdown in 5....4...3..
I wish she would understand that it was too early to buy a plain burger and a med fry. She doesn't get that. We don't meltdown often anymore, and although she CAN say the word "Donalds" she never did, she leaves it up to detective mom to decipher.
I had microwave fries so i fixed those up and she calmed down...but I'm still getting the 'stink eye' because it's sooooooo far from a satisfying 2nd choice.
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Trying to add a new banner. Bobbert is leukemia free and will be coming back to school in March!! YAY!! March marks his 1 year of NED since his relapse, and if they can make it clean for a whole year? Probably smooth sailing for the rest of their lives.
But now, the kid's friend Kate Boone, young, newly married, not started a family yet..they've just got their degrees and are embarking on life, when melanoma crashed that party and changed life's course.
http://katesfight.com/blog/
This is her blog, and she has a go fund me link on it. Go fund her. Cancer is expensive. and pray. She just finished her regimen of chemo.
Cancer sux...
It's been a rough day, ok, a rough WEEK at the little house in Autismville, as a 14 yr old girl, who has been flooded with hormones is hard enough to live with, let alone one with all the extra enhancements that come with my 'little angel'
She doesn't like bathing anymore. Out of the blue she just started fighting it. This morning it took me AND the sarge 20 minutes to get her into the tub. After we finally got the deed done she decided to add the exclamation point onto her disgust by throwing everything she could reach. (add vacuum, spot bot, , impromptu scrubbing and washing a load of towels to my list for the day)
She can't help it...it really hurts to be a girl sometimes, and she has no idea why this keeps happening. I'm calm, daddy's calm...we understand. The pets just run when they see her coming. School was out for us yesterday, Monday, for a "teacher's in service" which was a drill on how to handle an active shooter. (man oh man, the things those poor people have to learn on TOP of everything educational) but we decided to keep her home one more day.
She settled, enjoyed the rest of her bath, and was calm enough for me to take her to Walmart. I really didn't want to add that trip as my BP was now sky rocketing, (staying calm on the outside takes it's toll on the inside) but in order to clean up all the messes that she and my critters made, I had to go get laundry stuff, as well as more feed so that the critters could make more messes.
Miss smarty pants was told on the way in, that because we had to buy dog and cat food, she could not ride in the cart. A good excuse to give her because in reality, I can no longer push her around in a cart. She doesn't look very big because all that weight is compacted into her little 'spongebob' body, but she is really getting to be too heavy for us old folks.
I walk in, pull out a cart, look around and no Molly. No, she's in the vestibule where they keep the Hummer-Carts. Those monstrosities that allow her to ride in the back with plenty of room to put the dog food in the front. Yep, she has figured out a way for her to ride, and me to get the well-needed aerobic exercise of pushing a 200 pound cart that turns like a semi.
But...she's calm. She found a new purse that she's wearing and grinning with that (what the boys call) stretch-face smile, the one she keeps for when she's REALLY satisfied with the way things are going.
I wheel around to the pretzel aisle and stop, because it's loaded with women and carts and chatter and I don't drive my semi well enough to maneuver around that kind of traffic. One lady is on her cell phone asking her hubby what kind of chips he wants...a mother and daughter are having some giggles, a girl is working on inventory and so on...their carts are all parked on the right, they are all standing on the left.
Molly has a few words that she can use appropriately, and we have taught her so as to make her life less frustrating. "sorry, move please" "Scuse me" and things of that nature. But not today...today miss grumpy is not in the mood for all this business between her and her pretzels...so in her loudest Missouri State Trooper voice, and with hand motions commanding from her blue Hummer seat, she stands and yells..."WATCH OUTTTTT!!!!" which was articulated PERFECTLY and definitely silenced the crowd.
I was mortified..."MOLLY! that is NOT what we say!"
"Scuse me, sorry"
To the first cell phone gramma, who was probably now wishing she had been wearing Depends, I said "Yes, excuse me is the polite way" to which the gramma replied with a twinkle..."Yes, but not HALF as effective!" Everyone else smiled (and moved out of the way) and had chatter for Molly, now that she had made such an entrance...even the associates working in there were laughing. (Trust me, sometimes we do think the same thing, especially when the bosses are demanding work to be completed in a hurry)
So, we made it out with our new purse and to the car without anymore hassle..I think she'll be ready to go back to school tomorrow. They could handle it efficiently, but one more day off wasn't going to hurt anything.
Fun times at my place. Now? I'm off to take care of the tornado that's gone through my living room on this unscheduled long weekend. Hopefully it will be calm all day tomorrow.
The hardest thing about Autism, to me, is the loss of communication. Through intervention, speech therapy, and hard work, Molly has some words back (if they're important to her) but we don't have "nomal" conversations. We have routine ones, like
"what cereal would you like this morning?"
"eggs, toast" (ugh)
with food? she can be pretty verbal.
She hears and understands everything, and we talk to her like we would talk to any other tween....
"TURN THAT CRAP DOWN!!"
Probably the worst? Her not being able to
#1 be aware of the location of her pain and
#2 being unable to tell me she has a pain.
Otherwise, our conversations will consist of me asking a question, and her answering with all her words.
"How was school today?"
"Aubrey Jo, Owie (Zoey), Sarge (dog) Puppy (Mizzy the dog) CAT (Lucifer) Koo (koo kitty never got a name, molly just named her) and Kee (the new little bit kitten) Bill, Babe (Gabe) *her brothers* and Harter" (we haven't quite figured out who that is.)
She repeats these names of those nearest and dearest to her heart, (Pongebob, Quidward, Dora, Boo Bear (Little Bear)) and moves her hands the way you would if you were in a conversation with me, but it never makes any sense, and without the update list from school, i would have NO IDEA what happened there today. (verbally that is...if she's having trouble i can read it thru her attitude)
Yesterday was Friday....I'm trying to get her to understand the days of the week. We have a calendar at home of the days, so she can understand the pain of Monday and the joy of Friday!
I pick her up from school on Fridays, also...another Joy, and IF SHE'S GOOD, we make a run thru "Donalds" (mcdonalds...a new word for her, again, only if it's REALLY important)
I start in after the smiling pick up, with my usual conversation..."how was school today?"
nothing.
"Was it sno-cone day"
nothing but a smile
"What color of sno-cone did you get?"
"BLUE!"
omg!! she answered me!! WOOHOOOO! I was SO excited!! she actually TOLD ME SOMETHING!!
I kept my delight somewhat curbed....until i got home and could text her aide. She confirmed that indeed the sno-cone was blue, and the party ensued!!
It may seem small to the parent of typpies (NTs or Neuro Typicals, typpies in my house) but to a mom that's never had a real conversation with her kid for 14 years? it's HUGE!!
Have a great weekend. :-)
It's beautiful here this morning...misting rain, low humidity, cool temps....our first hint of autumn. our first day where it's not at LEAST 80 degrees with 90% humidity.
Fridays are fun days, and it's usually the ONLY day of the week i can get my little miss happy to be going to school. This morning, even that wasn't motivating her, but we keep on, calm and steady, going through the morning routine.
I finally tell her, "I'm going to the car, get your shoes on and get out here, we don't want to be late for FRIDAY!!!!"
Already in the Tahoe, I watch as she walks to me sporting flip flops. Ugh...she loves them but can't walk very fast in them. I KNOW they have to be a pain in the aide's side, but, you know, all the REALLY COOL girls wear flip flops to school, and evidently all year long.
Right behind her is daddy, in his robe and slippers, in the misty rain, carrying her regular shoes. Yea, we got her figured out. I'll send the other pair in her backpack for backup.
We have an uneventful trip, pull into the drop off line at school, pop the seatbelt, and I grab her pack to add the shoes, as well as the lunchbox full of 'reward' snacks.
I notice the flip flops laying on the floor..."Hey, Put your shoes on."
Now, at this point, I must explain about Molly's 'hit and miss' autism. I didn't get one of those really neat kids that like all their stuff put up in the same place, I got miss 'likes all of her stuff dumped all over' The stuff that's really important to her? Oh she hides that stuff. A really un-fun game of hideNseek, particularly if it involves food stuffs.
She also doesn't hold hygiene at the top of her priority list.....but? the bottoms of her shoes must NEVER be dirty.
Yep, this girl that could grow worms under her nails if we didn't go through the nightly scrubs, refuses to let ANYTHING stick to the bottom of her shoes. I keep antibiotic wet ones in the car, and have actually pulled the car over to clean her shoe bottoms so she'll settle down.
This morning, this first really cool morning of the season, I watch in horror as she picks her shoes up and tucks them under her arm.
NOOOOOOOOOOOOOOOOO!! we HAVE to have shoes on to go to school!! Miss smarty pants has been quietly contemplating this whole situation on the 10 minute trip, and has a lightbulb over her head now. If she doesn't put the shoes on at ALL, they won't get DIRTY!!!
I desperately grab for the other pair, maybe she'll wear one pair, and carry the other, switching them inside. "Here, put THIS shoe on instead!"
Now? There are 3 shoes tucked under her arm, and two bare feet on the floor.
The aide opens her car door, sizes up the situation, and busts into laughter..."It's ok, we'll fix it up inside"
All the other teachers waiting to help the other car-fuls of kids, are now looking at me (because now we are holding up the process) so I explain about the shoes.
As I pulled away from the line, i glance in the rear view, watching my barefoot daughter inching across the cold cement & I was happy that we could provide such a good laugh this morning for all the other teachers.
She can always surprise me. Molly 1, Mommy 0.
Autism is a very narcissistic disorder. It is hard to love a child so hard, so much, and have very little returned to you. She doesn't give big hugs often, doesn't seem to have a sympathetic bone in her body (ohhh you are bleeding mommy! that reminds me, i need some ketsup) So first? Let me give a shout out to all my Autism Mommies!! I feel it, girlfriends!!
I'm not complaining, it's just how it is. This is Autism Education 101.
Migraines are debilitating, again, just the facts, jack.
I didn't have them in my youth, but as my life changed due to age, hormonal fluctuations, rag weed content, barometer changes, WHO KNOWS? I did develope them.
Fortunately, with the sleep study and addition to my already full night stand, the bi-pap machine, (yes, bi-pap, not c-pap, i don't do anything half-assed) they have been decreased immensely.
Unfortunately? One migraine a year is one too many.
Today was my day. They wake me early,and in the 1/2 state of unconsciousness, you are aware of extreme nauseousness, and incredible pain...but it's hard to pull out and start to deal with the necessary steps to get them under control. It's so much easier to drift back off to sleep. A little voice in the back of your pounding brain spurs you ahead...it knows that the situation is only going to get worse.
I stumble to the medicine cabinet and start with stomach settlers...pepcid, tums, prilosec...what ever i can get down my unable-to-swallow throat. Then? Excedrine, IB, Tylenol...anything to stop the pain. It has to be done in stages, as again, the ability to keep them IN my tummy is essential.
Then? It has to be quiet and dark. I usually spend the first stages on the back deck, till tummy is under control, as I am considered armed and dangerous at that point. It's unpredictable, violent, and explosive. This ensures that the poor sarge isn't liable for seriously gross cleanup duties. Only after the dancing stomach is eased can i crawl back into my bed.....shhhhhhhh just quiet and dark...just for a little bit.
OK, you have the whole game plan....back to Autism. Molly has also woken early, and has some serious issues that need my attention. Ugh. No, daddy can not be trusted to fix breakfast, or pour the ketsup correctly. "No, Daddy!! Stay!" (stay is her new word, and she uses it with hand signals...except, to her, it means 'stay away')
This morning? A small miracle occurred. I touched her hand to my pounding Melon...and said "Molly, Mommy's head...OW...Hurt....Light off...one minute!"
SHE COMPLIED!! I gave her my phone, she happily took off with it flipping my bedroom light off, and left me for an hour to get things under control. I started buying smaller containers of milk & chocolate milk so that she can grab one of them (no denying the morning fluid intake with her...ever) and lulled back off for a full hour of uninterrupted quiet & snoozing.
She reentered the bedroom, and became extremely verbal..."Eien" (she doesn't call me 'mommy' it's a spin off of my first name) Juice, ketsup- red, dinosaur-reen (a green dorothy the dinosaur is in her hand) eggs, toast, corrrrn (fork) tail (she also has a life sized Dorothy the Dinosaur Tail) Dora!! Boots!! Amote!! (i need to get the remote and start the DVR) I guess my time off is over, but it's ok, the worst also is over.
Yes, dear...here i come. THANK YOU for being so patient.
TV is on, breakfast is served, and even though it's going to be a really rainy holiday weekend? I'M THRILLED....everything is coming up roses here!!
I will never know EVERY reason why she does what she does, but paying for them gets expensive sometimes. This week, I have recovered from the loss of my laptop...ok, not a total loss as I have it wired together and added an external mouse now, (the keyboard mouse no longer works as well as the checkerboard of missing keys)
And she's a 'hider' Stuff goes missing around here, and with both the Sarge and I on the hunt, it may be a week before it's recovered. Random stuff. The remote, Zoey's flip flop, this week? one of the land line cordless phones, and end of year last school year? her BOOKBAG! It took us TWO weeks to find that one! She's a very good hider. Again....i cannot reason why. Well, I figured out the bookbag one.
I do try to stay organized, not that you would ever guess it by walking into my house, but I really do. There are priorities, of course, like socks. I keep a small clothes hamper by my husband's side of the bed, hidden behind the dresser, for his dirty socks. I despise dirty socks. They are just gross. Over the years he has learned how NOT to 'donut' them (more touching on my part) and to toss them in that cute little bucket. On laundry day? I just dump the little bucket into the washer, solving all my sock-touching headaches.
This morning, washing whites is on the list of chores, and I grab the little bucket of dirty socks, dump them in the washer, and hear KER-PLUNK!
Yep, there's that missing house phone.
Now I'm adding rice to the shopping list, and i don't believe we've actually eaten any of the rice out of this bag....just used for drying out electronics!
But she's pretty cute.
wow. just wow. sometimes life is soooo cruel you can be left just breathless, numb in the brain in & in so much pain you don't know what to do.
That's when you call your sister. It's a long story...
A couple of years ago, i opted for implants in my mouth. I have fought these horrible teeth my entire life..braces, fillings, partials, crowns, root canals...you name it. So when my aging teeth started to act up I decided to just replace them...now? i don't have to deal with this for at least a decade.
Well, at least I thought so, until just before the holiday. Yep..lost a crown, and had horrible pain. I didn't think a crown could cause that kind of misery, so i thought maybe i had a sinus infection.....allergies have been a real pain this year. After a couple of days I realized...IT WAS THE IMPLANT! Danged thing was loose. AUUUGHHH!!
Had to wait till the Monday after the 4th to call the doc...they would see me the next day. Nope, it'll have to be Wednesday, I'm already booked for Tuesday with Dad's appt's.(The timing will be important later)
Then? I had received some really disturbing news from the western edge of the state. My online friend Leah Baker in Joplin's girl Ashton, just turned 23, and was really ill. Leah and I have been friends forever...in 2009, Ashton was elected homecoming queen at her school, the first as far as i know, and Leah got involved in FB, so things really took of for us!
Ashton, being nearly a decade older than my Molly, also enhanced with Down Syndrome & Autism, was always a source of hope, entertainment, and a peek into my own future. She had recently been diagnosed with early onset Alzheimer's also, which was heart breaking, but I had really not witnessed any of that. She was still the same ole, sweet and sassy firecracker of a girl...just like my molly.
The way her mom interacted with her taught me about humor, acceptance, and of course, the unconditional love that only a parent of a child with special needs can know. Leah was so involved with activities with Ashton, it put me to shame...i tend to wait for the backup of big brothers when deciding on big activities with molly as she is strong enough now, if things go south, you need to have a couple of he-men around to get her up and moving again. Not my brave Leah...she just went for it.
Monday, Leah went to check on Ashton, and she was complaining of a tummy ache, a bad one. Now, as parents of kids with DS know...when your child is complaining of pain? IT REALLY HURTS. Molly would almost have to break something before you understood she was 'hurt, boo boo"
Leah, immediately took Ash to the Doc, (caregivers had said "probably just a virus") but mom knew better, and then the doc also was concerned and sent them into the E.R. for some testing...routine routine routine..and then? the world tipped a bit.
Ashton's oxygen sats dropped...low...dangerously low. They are trying to run every test available to figure out WHY WHY WHY...but then she dropped way too low, and they were forced to try a bi-pap with her. (a bi-pap is a full face mask that BLOWS oxygen in, forcing your lungs to accept it. It's VERY invasive but does the trick)
Let me insert here, that this is the same route my mom was taking in Dec. A crash...an unexplainable crash. It would happen occasionally, but, with her, a couple of days inpatient with fluids and all would be fine. In my heart I was hoping that this would be the same with Ashton.
So...back to Wednesday. I have to drive up to Springfield because I live in the woods. If you want access to something a special as an implant specialist, you have to travel a bit. I'm pretty irritated about having to make this trip, but started thinking and looking at google maps and see that Joplin is only an hour west of Spg and begin to toy with the thought of running on over. Sent a message to Leah making sure it was ok, and to get the name of the Hospital.
Ashton couldn't tolerate the bi-pap mask & high pressure of it, something I understood as well, as neither could my mom. Leah had posted that they had to vent her (always scary...even just the word) and I expected to walk into an ICU room, and dive back into bizarro hospital world. I expected to see a comatose young woman, and hear the irritating sound of the whishhhhh of a vent.
When i did walk in, Leah had stepped out, Maw maw was sitting next to Ashton's bed, head down ...and as my eyes moved up to gaze at this girl i have come to love ...and preparing myself for the worst??? I saw something else. I saw the child with vent installed, but she was not unconscious. In fact, she turned, looked at me, eyes lit up and smiled and her little hand moved up and waved.
All my apprehensions disappeared as I also broke into a grin, and startled maw maw because i was ELATED to see she had made that turn...the turn for the GOOD! WOOHOOO LOOK AT YOUUUU!!
We chatted and yes, Ashton had indeed popped out of the dark and back into our world, and she was a bit irritated with her current circumstances. Some candy striping boob came in with a tray of food and left it in the room..Ash started pointing at it and getting VERY excited...we had it removed immediately, but it warmed my heart that she was hungry. She got just as excited when the doc was in.....there was a pizza commercial on TV she kept pointing out....she was STARVING. She looked right at her doctor and signed "finished" The three women laughed because we knew she was saying she was ALL DONE with this situation. Get this hose out of my throat, get me some food, and then DISCHARGE...i wanna be HOME!
Doc was just as happy, and told us he would get that tube out pronto. He wanted to leave her in ICU for the night, just to make sure, but that she would travel to a regular room in the morning if all went well. The extubation got postponed for another emergency in the ICU, in the next room so we were aware it was going to be awhile.
I sat with Ash for awhile...reaching to rub her palm...something that settles my molly right down, and the last thing we do at night to help her drift off. They confirmed that that was also Ashton's sweet spot. She kicked off her sheets and got a foot rub, too. We laughed over the few words our two girls used, but the demand that came with them. When molly wants me to take a second and really listen to her, or wait for her, she says "MaMinute" (one minute) Leah tells me Ashton puts one hand out, the other on her hip and says "FIVE minutes!"
Either way, we both know we need to take a second and that it is IMPERATIVE that we do so, NOW!
:-)
She grew tired & was still upset about being hungry, asked for the TV to be turned off...and i decided to make an exit as I didn't want to be a source of busy to her if she needed to rest. Besides...i also had exhaled a deep sigh of relief knowing that she was going to be OK. She got to be extubated eventually, and she got to eat. YAY!
Up until this moment, there was still no reason for her crash. They had been in process of testing when it happened but had to react instead of being pro-active. No one even imagined what was coming.
By the time i got home there were messages...Ashton was again in danger. She's spiked a fever and was declining fast....and then the doc revealed the news...the same news the doctors had told me last November.. We're sorry...but she's just giving out. Her body can no longer sustain life without serious intervention. When the heart weakens, the o2 weakens, and most organs will follow suit. Now, mommy, who's whole life had been dedicated to sustaining this precious, fragile life.... had to make decisions on how she wanted this life to end. This falls into the category of "things that parents should never have to do"
NO NO NO!!!!!! IMPOSSIBLE!!!! 7 months ago i felt exactly the same panic, but that was with a woman that was 86 years old and had been on dialysis for 4 years...NOT A 23 YR OLD CHILD!! this can't be happening!! My mom got to orchestrate her own decisions...i didn't have to do it for her. This was WRONG on so many levels!
Shortly after that? Leah messaged that Ash was now on comfort care, and my heart and brain came together to try to accept that this really was happening...to try and offer comfort to another mom. There was no comfort to give as Ashton passed away within hours, just like my mom, surrounded in love and in peace....she just went to sleep.
I surprised myself when the grief that I had stored for the past 7 months came SCREAMING out of my lungs...I can't ever remember crying that hard. All of it...all of it erupting from the depths of my soul. Inconsolable, i called my sister. We've been tag teaming each other thru too many tragedies since losing mom. She came through for me, too.
She, a woman of faith much stronger than my own, started with my implant problem. "Do you really not see how the circumstances unfolded? You've been a hermit for 7 months. You haven't even ventured into the back yard. SOMETHING had to motivate you out of the house, and that would have to be pain, as you weren't responding out of duty, need or desire. Your implant loosened because on Wednesday...not Tuesday, not Friday, but on Wednesday, you were suppose to be in Joplin. You wouldn't have gone had you not already be in Springfield, right?" and then she cried with me. Her mommy heart was also breaking for a family she didn't know, but that doesn't matter when it comes to moms and kids. She cried for my pain, for Leah's pain, for her own pain. We cried for our combined breaking hearts and how unfair this world is.
So, as I muddle through this everlasting grief process I will give pause and wonder if God was really working.with me. However it happened, I got to be with the Queen, and her dancing eyes, and her delicate little hands and feet. I got to witness the devotion of her mom and Grandmom, and was schooled in what is important in this life.
This morning molly got up at 6am. She didn't care that I hadn't really slept, that my eyes are swollen and red, and that i feel like I could stay in bed for the rest of my life. She said "eggs, toast, fork" and I rolled over and gazed at her beautifully shaped almond eyes. I responded with "hugs and kisses first, and then breakfast" and got myself moving. Thank you, Leah. Thank you for sharing your child with me...your child, your humor, your attitude, your example, your parenting experience, all of it. It hurts...it hurts bad, but i feel Blessed to be able to walk this path with you.
We love you....we all love you. Every mommy seeing this across the country, across the world. We wish you peace. And we will cherish the memory of this perfect child forever.
