T-15 days ’til S-C-H-O-O-L!

T-15 days…the countdown begins…

This month has been full of emotional turmoil in our house.  Several people were battling vicious cyclones of internal turmoil causing a bit of overspill onto the rest of the family.   After a few times of being dumped on from some particularly physical, intense and hurtful attacks, RoseBud (my 8 year old with Autism) started having some pretty severe anxiety that showed itself in annoying behaviors.  Like getting into everyone’s personal space and saying “HELLO” over and over.  And sticking her hands right near our faces and yelling “TICKLE, TICKLE”.  I admit, if it were only once or twice we could all just ignore it.  But this goes on and on. Just about the 50th time I hear her yell “TICKLE TICKLE” I feel like my head will explode!  She targets her younger siblings who have no patience and simply can not ignore her obnoxious behaviors.

Therapists will usually tell you that in order to extinguish a behavior, you must figure out what she wants from that behavior and NOT give it to her. In this case she wants attention. If I were they typical mom with 2.2 children, life would be so much simpler and the behavior would be squelched in the blink of an eye (theoretically, anyway). That simply doesn’t work with a house full of 7 children. While I am body blocking her from poking her fingers in the 3 year old’s eyes, the 5 year old walks nearby so she makes a lightning fast 180 and yells “HELLO GRUMPY BEAR!”. Meanwhile the 3 year old is STILL crying “Stop it! Stop it!” and now the 5 year old is screaming “I’M NOT GRUMPY BEAR!”. And as I escort her to the time out spot, she kicks yet another sibling and spits at them. So now I have a trio of yelling, screaming and crying.

Then there is the ultimate in stress related behaviors:  biting.  When RoseBud is overstimulated, it is like she is a bottle of soda pop shaken with pressure building up.  She has to release that pressure somehow and very rarely she turns that energy into biting.  Twice this week she was so agitated that the energy bubbled over and she bit her 3 year old brother and me.

Her stress symptoms have gotten better over time, but I have to admit I can not WAIT for school to start again.  The strict structure and routine of the school week is exactly what she needs at this point.  Structure and routine are cornerstones towards building a sense of peace with many autistic individuals.

RoseBud and her brothers

School…t-15 days…the countdown begins…

Advertisements

Blessings in the midst of Chaos

 Special Music – 5/15/11– Here I am singing “Blessings” by Laura Story.  The audio levels  were being adjusted for the first minute or so, but this is what I was saying:

…even if I can’t ‘feel’ his presence I know, I really KNOW, that he loves me and will not leave me.

”The song I am going to sing is one that touches my life in a way that is very personal.  Since Mothers Day seven days ago this is what has happened in my family:  1 ear infection,2  staph infections, 5 trips to the doctor, 3 cases of strep throat, 1 visit to the psychiatrist, 4 therapist visits, 2 babysitters (thank you Mom, thank you Megan), 2 birthdays, 2 sets of cupcakes at school, and 36 trips to and from assorted schools!  This song is about trials – and about God’s blessings.  Recently, I counted up the nights I have been awakened in the middle of the night by healthy infants in need of mommy – would you believe a solid 3 years and 6 months?  The question in this song that says “What if a thousand sleepless nights are what it takes to know you’re near?”  really hits home.  I used these 3 years and 6 months of sleepless nights to pray for you, and you, and you.  And I know God heard me.  But my favorite line in this song is “What if my greatest disappointments and the aching of this life is a revealing of a greater thirst this world can’t satisfy?” because when I am hit with trials, I long to know the Lord.  I seek Him to comfort me when I’m aching, I cling to his promises and His love.  On the days when I just can’t seem to make it – the Lord is right there.  And even if I can’t ‘feel’ his presence, I know – I really KNOW – that he loves me and will not leave me.  So here is “Blessings”  by Laura Story.”

Appreciation

Sometimes it is good to reflect on the good things that people see in you. Today I will look at the good things from a friend of mine’s point of view. She sent me two very encouraging emails, and I decided to post them here to remind myself:

I forgot…. I forgot the most important part…. appreciation.
To see all you had done on Wed…. to see the dinner prepared and in the oven.  The kids were happily playing when I arrived.  you had found just the assistance you needed.  The doctor as well as the amazing teenager.  And then hearing the kids comments at dinner…..

The table is set
The kids are all present and quiet in that moment
They were clear about what they liked and didn’t like.
The house was in order
There was food to eat and the choice to eat or not
There was water to drink
There were chairs to sit on
There was a table to eat on
Electricity to run the computer, the refrig, the TV.
There were utensils to eat with
There is a family to be part of
There was someone to say a prayer over dinner
There were people who care about each other and have fun together.

Those are just a few things I appreciated
I also appreciate having this opportunity to get to know each of the “Team O.”

As we left today “Ms. K” commented on the “lighter” feeling in your home….’Mr.P’ was feeling good about the progress…we all were… and as listened I thought…. the answers all came from you…. it is nothing we have done.  You continued to search for what you needed and called in that energy …. more attention for the kids,  extra hands, the right doctor and medicines, and witnesses to your life…. it can seem that you are alone and then really we just didn’t invite others in….you had the courage to do that and I have no question when our time is complete that the next right people will appear…. Just know we did no more than reflect the love that is you…. and share that with your children… now you get to shine it on Andy… because it is who you are… amazingly powerful.  Molly isn’t the source of the love, you are.. and your connection to the main battery… GOD… is what I would call  Plugged IN….

Still Fried on Easter

I realize I haven’t posted in a while.  Least you think I have suddenly gotten a perky new life, I will give you a true story straight from the trenches that are my life…

Peter

Good Friday service at church was tonight and I have been looking forward to this for a few weeks now.  A brass band, a violin solo, a new baby dedication, singing, communion, friendship, and food.  Praising the Lord for taking the punishment for my sins so I can live forever in heaven – his very personal gift to me.  As usual, no one in my family wanted to go to church with me.  But because I’m “the momma” I can at least make the younger ones go with me.  Hey, they’ll see their friends, they’ll listen to a cool concert, they’ll eat snacks.  It’ll be fine, right?

[insert snicker, giggle and guffaw]

Daniel, now almost 7, was dragging his feet (and his bottom lip) on the ground as we walked in.  I don’t think I’ve ever seen such a pouty face from any of my other children.  Five year old Evelyn was being shy and reluctant but she was behaving herself quite well.  Rosalie…I can not even describe to you…  She was bouncing, rolling around, making noises, touching people, blowing raspberries, taking off her shoes, and talking incessantly.  Did I mention that Rosalie has one volume?  LOUD.  Then there was 3 year old Peter who, sensing that I could not take him out and give him some serious consequences, was mimicking every obnoxious thing Rosalie was doing.  Monkey see, monkey do…

This is the photo I was trying to take when...

We got through the beginning part of the baby dedication with minimal fuss.  Then just as the Pastor got up to speak I leaned over to take a photo.  Peter, all of 3 years old and b-o-r-e-d, decided to get up and start grabbing the camera.  I stood up slightly to get the camera out of his reach, and it was at that exact moment that Rosalie decided to do a stealth move worthy of a gold medal!  She dived behind us and in a heartbeat she was laying across her seat, my seat and Peter’s seat.  WOW was Peter ticked!  He started yelling at Rosalie (remember, we’re in CHURCH, and Pastor is talking).  I very quickly got him to quiet down (in my mind it took forEVer).  As Rosalie absolutely refused to sit up I had to physically pick her up – all 70 lbs of her!    I felt like I was wrestling an octopus!  All arms and legs with a body that went dead weight.  Fast forward a minute later when a complete stranger leaned over and made a nasty comment to her (to shame her into better behavior?!)…

“He doesn’t know she is Autistic” I told myself over and over.  But as the hot tears of frustration, anger, sadness, and self pity welled up and spilled over, I felt the full weight of my situation.  I am mom of many children with diverse and complicated needs and challenges.  Those who know my family can sympathize, but no one can truly empathize.  I have a few friends who know what it’s like, but those are mostly online buddies that I don’t ever get to sit and chat with over coffee.  I feel very alone in this struggle.

ALONE:  lone, lonely, lonesome, single, solitary, solo, forlorn, friendless, isolated, secluded, withdrawn, quarantined,
segregated, separated, detached, disconnected, abandoned, adrift, deserted, desolate, forgotten,
forsaken, neglected

Silly Rosalie

After the band played and a few other musical numbers played (which I whole-heartedly enjoyed)  I was D-O-N-E!  I could not handle the wriggling, poking, spitting, obnoxious noises, incessant questions, and disapproving looks.  Not one more kick.  Not one more raspberry.  Not one more poke in the back of my head.  And Lord I am so sorry, but I could not handle one more kiss on my arm.  I know that sounds insane (you can’t handle a kiss from your Autistic daughter?!).  It’s hard to explain:  With Rosalie, it was a power struggle.  She would violently grab my arm and pin it down and kiss it, but not just a kiss – a big long, hard kiss that was thoroughly unenjoyable.  After literally wrestling my arm away from her for about the 57th time I was in ‘touch overload’.  I was truly worried that she was on the verge of biting me – she does that when she is overwhelmed.  I gathered up the 4 children I had with me and walked out right in the middle of the service.  The Pastor came out to me in the parking lot and was so sympathetic.  I am very blessed – our church has many people who help me out when the children get out of control.  This night was just a totally different kind of service, presented by a ‘sister church’.  So the people who came tonight were not our regular Sunday morning worshipers, many of whom who I can count on to help redirect the children when they get ancy.

I am choosing to be thankful…

Our Molly

I am thankful that we will be receiving a new member to our family.  Molly, Rosalie’s service dog, will be coming to live with us in less than a week.

I am thankful that those who used to criticize me and give me parenting advice now realize that Rosalie is not just a poorly behaved kid that lacks discipline.

I am thankful that none of my church family ever, ever, ever make nasty comments to her – or me!

I am thankful that I can go to church and that my church family is loving and kind and helpful.

I am thankful that the Pastor of the church left during the service just to make sure I was ok!

I am thankful for Jesus dying on the cross and raising again.  He’s not just some character in a stuffy dusty old history book.  He is alive, living in heaven and waiting for me there.  He listens to me when I cry out to him, he loves me whether I’m making good or bad choices, he is here for me no matter what situation I’m in.  He’s not some ‘mystery force’ out there that I can tap into and control…  He is the Creator of the universe who has chosen ME!  Very personally.  Very intimately.  “Before you were formed I knew you” he said.  He KNEW me.  For that I am thankful.

I am thankful that Rosalie is able to understand in her heart what God is all about.  She may not be able to verbalize it, she may not show it, or even mentally understand what being a Christian is all about.  But I am positive that the Lord can talk to her in a way that she understands, deep in her heart.

I am thankful that Rosalie didn’t die 12 hours after she was born when she stopped breathing.  At 2 weeks old. At 5 weeks old. And I am thankful that she did not die any of the times she had a seizure in her sleep because for some reason I was right there to pull her head out of the vomit soaked pillows.  For that I am eternally grateful.

Dear Lord

You knew what you were doing when you put this family together – you gave me each one of my children, and allowed them to be unique, special, and yes, even challenged.  You have a plan for each and every one of my children – and that plan begins with me.  You see past all the walls I have put up to protect myself from heartache.  You to see how hard I try to be a good mom.  To do the right thing for my children.  You see the critical people in my life, and you love them too.  Thank you for being here to help me through all this.  Thank you for your kindness to me when I need it the most.  And mostly, thank you for loving me enough to die that painful death just so that I can live with you in heaven.

In Jesus name, Amen!

Ranting and Raving

Can I tell you a hypothetical story?

There once was a hypothetical young girl – lets call her HG – who was blessed with a love of singing, drawing, serving others and being able to amuse herself in solitary for hours on end.  HG had a very difficult time understanding the meaning of others words and intentions.  This led to frequent terrible and uncontrollable rages.  People nearest and dearest were harmed over and over from her volcanic eruptions.  Younger, smaller people were shoved into walls, tripped, or hit by flying objects.  Her siblings came to fear her for her size and strength, and went running when she came close.  Her mother repeatedly asked for help from councilors, police, social workers, pastors, teachers, and doctors.  One day the doctors gave her a happy pill.  It was to relieve her anxiety, relax her when she was on edge, and help her focus so that she would not misunderstand the intentions of others and retaliate in frustration.   HG knew how calm and focused her happy pills made her, but she still weaseled her way out of take them when she thought she could get away with it.  The war waged inside of her:  take them and feel better or don’t take them and be a ‘normal’ person.  She thought “I don’t like to be different”, and taking medication made her feel different.  It never occurred to her that by taking her happy pills, she would look less different to the people around her because her behavior would fit in with ‘typical’ kids her age.

Have bike, will travel (safely…I hope)!

Have you ever laughed at those funny videos where someone does some stupid stunt and lives to tell about it?  There are some that are “ha ha” funny.  And then there are some “so funny I spewed Pepsi out my nose”.

Either way, the videos we laugh the most at are usually the ones where we think “Dang! That HAD to hurt” as we are mopping up the spewed Pepsi.

…a funny thing happened to me on the way home today…

To some, the vehicle I drive each day is a bus.  To some it is a 15 passenger transport vehicle.  To me and my kids it is “the van”- the vehicle that takes us everywhere we need to go, every single day.  I was driving my van home on a quiet neighborhood street full of twists and turns.  I was also on my cell phone (shame…I know) having a discussion with the doctors office, being extra careful (and slow) as I drove.  As I was easing around a corner I screamed “Oh S*&%!” right into the phone.

A man on a motorized bicycle was turning the same corner I was, except he was not paying attention.  He was trying to cut off the corner by getting into my lane and was coming right at me!  I stopped my van, but he had his engine on full throttle, and he swerved within a foot or two from my front bumper!  I watched in my rearview mirror as he swerved back and forth and finally regained his balance about half way into a neighboring yard.

I calmly told the receptionist I was sorry for shouting in her ear, but I almost had a head on collision with a bicycle.

A few minutes later I hung up the phone and wet my whistle.  My brain must be into sabotage, because it was at that exact moment that I had one of those vivid flashbacks of the look on that mans face.  Sheer terror mixed with the embarrassment of thinking “holy crap…where are the brakes on this thing???”

As I was wiping the Pepsi off the steering wheel I thought “I could have won a million dollars with that video!”

“Paging Dr. O”

It is my humble opinion that anyone who is a mom has at some time or another been a nurse, a doctor, or a psychiatrist (sometimes all three in the same day!).

Because I’m a mom to so many children, and several with special medical issues, I have become known as Dr. O.  No, I didn’t attend a fancy college or get a medical degree.  I am just a mom who has had to deal with many, many, many health issues.  And doctors.

Before my beloved pediatrician left, I would call the office and hear “Oh, hello Dr. O, it’s so nice to hear from you!  We haven’t seen you in almost a week!”  I own my own stethescope and otoscope, and use them regularly!

This week I was given an appointment for a sleep deprived EEG for my 12 year old.  I had to do this several times before at a previous doctor’s office – no problem.  I kept Julianna up late, took her to Denny’s for pie and ice cream.  Then took her home and let her play on the computer until her eyes about popped out of her head.  She went to bed around 2am, and I got her up around 7 to go to the EEG.

When we got there we were told that for a ‘sleep deprived’ EEG, she was supposed to have absolutely NO sleep.  NONE.

Apparently different neurologists have different definitions of what ‘sleep deprived’ means.  Julianna was rescheduled for the following morning.  Completely sleep deprived.  So after getting 5 hours of sleep, we were both instructed to go home, stay up ALL night, and come back in the morning.  We did it, and the next day Julianna fell right to sleep during the EEG.  We were in and out of there in less than an hour then Julianna got to go home and sleep.  I, however, had to stay up to get to two more appointments that day!

One of those appointments was for my other daughter Rosalie.  She has been having issues with her Epilepsy and I wanted to get a second opinion.  I  finally arrived at the doctor’s office after driving an hour away for this appointment, getting lost TWICE, and having to call the office repeatedly to get directions.  I really felt that the doctor took a very thorough look at Rosalie’s history, her diagnoses and her physical exam.  He is sending her in for a 72 hour video EEG, a geneticist, and a boatload of lab work.  I think the aggravation was well worth it.

This lab work is very specific and sensitive (genetic chromosomal microarray, organic amino acids, fragile x syndrome, and a bunch of other stuff I’ve never heard of…).  I pulled Rosalie out of bed this morning to get to the lab before she started getting hungry.  She and I waited in the lab for nearly 40 minutes before the phlebotomist finally said that we needed to come back tomorrow.  She could not find a few of the tests in the computer as the doctor had them listed, and even tried contacting his office but they were not open yet.

Meanwhile, my head has been throbbing since midnight, and all this sleep deprivation and running hither and yon isn’t helping!

I’m finally home now, after the lab fiasco, taking 3 children to school, taking 3 more children with me to my personal physician’s appointment.  I’m putting the finishing touches on this blog – then I’m heading to the couch to snooze while the 3 and 4 year old watch Sesame Street.

Dear Lord,

Thank you for your care and concern for me and my family.   Thank you that you love each and every one of my children even more than I do!  Please protect the young ones from harm as I snooze lightly on the couch, and please take this headache away.  Thank you that the lab called and confirmed that everything is 100% figured out so that we can get in and out tomorrow morning.  Please help me find a sitter so Andy doesn’t have to take time off work again.  Please help Julianna at school today, as she is having a hard time with her Civil War studies.  Please help Katherine keep that spark of curiosity for science.  I pray that Daniel will be stretched in his schoolwork without being frustrated.  I pray that Rosalie’s teacher will find the balance between what she can do, and what she just isn’t ready for.  I also pray that she will have a seizure free day.  Please help Evelyn remember to not whine today, and help Peter get the motivation to want to talk clearly so I can understand him.  Thank you that Aaron is so happy!  Help me remember important things like brushing teeth and giving baths when my brain is fried!  Please lead us to you today, and help us show your love towards each other.

In Jesus’ name, Amen!

Ok, so I’m not originally from the south…

 

Musing to a friend about this “Southern Fried Momma” blog, she gave me that “hold your horses – what’d you say?!” look.

“What?”

She just rolled her eyes and said “Southern?  You’re not southern!”  [Insert thick South Carolina drawl]

“But I’m here in Florida, and that’s kind of southern.  Isn’t it?”

…apparently in the minds of true southerners, Florida isn’t part of the south.

Between the seasonal influx of senior citizen residents (called ‘snowbirds’ both affectionately, and not so affectionately) the immigrants, and the emigrants…I will have to admit that Florida seems less southern and more American!

On my street the air rings with that unmistakable (and usually loud) New Jersey accent; the native tongue of immigrant Jamaicans, Norwegians, and Puerto Ricans making bold strides towards proficiency in our English language; the so-called “non-accent” of those of us blessed to be from the midwest; and even a few Brits speaking refined English!

I’m still considering myself the SOUTHERN FRIED MOMMA, because I am geographically located here in the south, I have so many moments in my life that I could say “my brain is fried!”, and I’m momma to 7 beautiful, unique, native Floridian children.

Wanted: God-Based Industrial Sanitizer

August 18, 2010

Well, let’s see. Rosalie, Julianna, Evelyn, Katherine, Me and now Daniel have all had the vomit germs. God, please wash this house with your mighty sanitizer, ’cause Bleach alone ain’t killing it!

Eileen: Amen and AMEN! (and let Shania’s tummy ache be a fluke!)

Kelly: Ohhh boo! I hope you all feel better very soon!

Catie: ni’s tummy aches are all see evil be evil….

Caren: I’ll add my hearty AMEN to that. Shoo, germs, be gone!!!!

Eileen: Too late.

August 19, 2010

Loretta: Maybe it’s time to hire a professional cleaning crew to De-germ your home, Cathleen. Seems like there is always something (even over the summer). Get well soon! ; )

Andy came home sick today. We are staying away until bedtime so that he can sleep.

Eileen: I used lysol wipes to sanitize everything he touched in the office.

Did you clean the bathroom too? They don’t pay you to do all that! Don’t forget the inside/outside door handles.

Eileen: Done and done. I even went in and told Jack that if he’s a germophobe to go back in the boys room … I know what girls would touch, but boys are weird!