6/14/13

What I wouldn't do for you.....

This last week has been one that I have feared for quite some time.  My dad warned me long ago, when we were just in the beginning stages of our little journey with Autism, that the insurance company would be a battle.  I don't really like people telling me no, and when it comes to my children, well, you just better watch out!

So upon finding out that our allotted therapy sessions were about to expire, my heart sank.  Its not even halfway through the year yet, and now we will be picking up Physical Therapy weekly on top of the Occupational Therapy.

So this morning, I put on my mommy armor, and called the insurance company (again).  I was prepared with friends support, prayer, and most important, a tenacious attitude.  However, the response I received was so unexpected, that it made me shed my armor almost immediately.  Here, on the other end of the phone, was a kind woman, who had all the answers and simply wanted to help.  One mention of the "a" word, and it was as if I had said the magic word.  She spit out a billing code and explained as long as that was used, no claims would be denied.  I think my jaw actually hit the floor.  I couldn't even figure out how to end the conversation, and I am sure that my numerous "thank you's" and "that's the best news" summed it up.

I now have new armor to wear, and it's a simple 3 digit code.  It doesn't mean that life will be peachy keen anymore, but just like with Blake and his "bag of tricks", I now have a new attribute to add to my armor.  And even though the answer was always there, I feel accomplished, successful and most importantly, like an advocate :)

There really is NOTHING I wouldn't do for my kids, even if it meant getting really angry with the insurance lady (which thankfully I didn't have to do).  Mamas, it is our job to help our children to be successful in this world.  We cannot, and will not be able to protect them from everything.  All we can do is show them the right way, pray for them every day, and hope that some of it sticks.  I want my children to know that this mama's love is never-ending!!

5/28/13

School's out for Summer!!

I am truly excited that both children are out of school for the summer.  Our days will now be less hectic and we can actually enjoy each other's company.  However, in order for us to do that, we need to have some rules, boundaries and most importantly, a schedule.

What's that you say?  A schedule in the summertime?!  But that's crazy talk!!  Oh, how I wish that were so.  At Blake's OT appointment yesterday, Ms Angie recommended that we keep up a schedule for the summer, and even gave us suggestions on how to create a visual schedule.  Its good for kids to be on a schedule, even for Zoey so that they know what is expected of them.

So, what am I doing today?!  Working on getting a visual schedule done of course :)  Oh!  I get to use my laminater, and printer, and paper cuter :)  I know you are all so jealous!!

I found some ideas on Pinterest and scoured the internet for free PECS printables.  Here was the end result.

The new summer schedule view with calendar :)

Summer Schedule Rules...always have to specify the rules in this house.  Then we have something to go back to for accountability :)

Envelopes at the bottom of each person's side to hold the pictures.

Velcro on each time and picture (this one was a written out picture).


I sat down and explained the new schedule to the kids along with the rules and what's expected of them.  We will start tomorrow.  Hoping this is just what we need for a smooth transition to summer!!


5/22/13

T-minus 2 days and a wake up

The official countdown until summer vacation has begun.  Two days and a wake up....only because Zo has to attend school for 2 hours and 45 minutes on Friday.  Blake's last day is technically today, but there is a "goodbye" Open House tomorrow for him.  There is so much to think about and reflect on as this school year draws to a close.  I think back to how we started off this year.  And how we have come so far since then.

Blake started off having a lot of trouble in school the first few months.  Even though he was back in the same classroom, he was not adjusting well and was throwing fits every single day.  Zoey was being home-schooled at the beginning of the year.  By September, we were already experiencing some difficulties and communication breakdown.  I couldn't figure out what exactly was happening, as I know my daughter is very capable of doing lots of things!

It was finally after our vacation to Disney World at the end of September, that I had time to sit down and evaluate our family dynamic, and I did not like what I saw.  I envisioned the future, and I saw a son who resented me for spending more time with his sister, and a daughter who resented me for keeping her away from all the "fun" of school (even though being home schooled was her decision).  We had a family meeting, discussed everything that had been going on, and discovered that Zoey was not happy being at home, and wanted to return to school.

The transition was an easy one for her, but hard on this mama.  As a Christian parent, I worry every day about what my daughter is learning that might have her questioning God and the Bible.  Children trust their teachers, and ultimately believe that what they are teaching is the end all be all.  I have prayed so many times since her return to school, that she would keep God at the forefront of her heart, and apply every thing she hears at school to what she knows to be true in God's word.  So far my prayers are being answered.

We were very blessed to end up with the teacher we had as well.  It is only Mrs. D's second year being back teaching (she took a break to raise her babies), and we found out shortly after Zoey joined her class, that she is a Christian.  That really helped to affirm the decision that we had made to let Zoey return to school.

Since returning to school in October, Zoey has excelled beyond my wildest dreams.  It took the kind words of a friend just a few short weeks ago, for me to really understand why the classroom setting is better for Zoey....she is a girl with a competitive spirit (just like her mama!), and being in that environment with her peers has caused her performance to improve greatly.  She is currently reading on a 4th and 5th grade level.  Her comprehension of what she is reading is astounding.  Her recollection of things is far beyond what I can recall.  We still work on things at home, memory verses and heart issues.  But I have to say that allowing Zoey to return to school was definitely the right decision for our family.  And now, as the countdown to summer break draws to its end, I can see that God is truly answering prayers on my children's behalf, and putting teachers and leaders in their paths that truly care about them, and are helping them to grow as individuals.

Summer break, here we come!!

4/27/13

If you don't have anything nice to say.......

I have had several of you remind me over the last few weeks that I haven't been blogging.  While I am so very thankful for my loyal readers, and the fact that you enjoy my blog, I have a confession to make.  I have not been blogging lately for one reason, and one reason only;  If you don't have anything nice to say, don't say anything at all.  Lately, I just haven't had anything nice to say.

First, I have to complain about the weather.  I mean what is up with all these teasers??  Its almost May, and I am expecting consistent 60 degree, sunny days.  Instead, I am given cold, dreary days.  I can handle the drear when its warm outside, but by past struggles with depression seem to rear their ugly head about this same time every year.  Winter doesn't bother me....its Spring, or at least the first month and a half of Spring.

Secondly, I have been struggling with my self-image a lot lately!  Last summer, I dropped 30 lbs.  I was motivated and happy, and energetic.  Well over the course of the last 6 months, some of that weight has slowly creeped its way back in, even though I have still maintained a majority of the healthy lifestyle that I started last year.  So it puts a real damper on one's self image, when you try to be healthier and don't succeed.   Hoping that the soon to appear nicer weather (see previous paragraph) will change this funk around and will make it easier for me to give myself a little kick.

And lastly, and unfortunately the most influential thing of the "If you don't have anything nice to say" phrase is my children.  The weather change seems to be affecting their behavior as well.  I am finding myself dealing with more and more stubbornness and challenges of my authority, and frankly, ain't nobody got time for that. Zoey, the 7 year old, seems to have an argument for everything I say.  The talking back and questioning of authority is really getting to be too much.  I lose my temper with her on a daily basis.  Nothing makes you feel like a great mom more then the guilt you feel after losing your temper of your kids (insert sarcasm here).  Me thinks I need a permanent time out.

Blake.  That one word sentence says so much.  To know my son, is to truly respect him.  I am so grateful for the friends in our lives who take the time to understand Blake and peel back his layers to see the true gem he can be.  I need a reminder of that so often.  But I fear we are losing ground.  It feels as though we have taken 6 steps back.  The hitting has returned.  I really, really despise the hitting, and no matter how many times we stress that hitting is not how we show our anger, the message doesn't get through.  When he's mad, he tends to hit.  And it doesn't even need to be explosive anger either.  A kid could not play the game the right way and he hits.  I could tell him no, he can't do that right now, and he hits me.  His therapists and teacher tell me to ignore a lot of the bad behavior because he is doing it for the response.  But I cannot ignore the hitting; yet when ever I address it, it seems to make it worse.  This anger issue, was one of the very first concerns we had with Blake over two years ago.  Before the diagnosis, before therapies and school, the anger and hitting and throwing things were what caused us the most fear.  And now, here we are back at what I feel is not too far from square one.  Its been a very frustrating last few weeks, and I don't see much in the way of progress.

That is why I am not blogging.  Because to be honest, I just don't have anything nice to say.

4/11/13

Page 11

So, as usual, the last week has gotten away from me without a single blog post.  Sorry to all my dedicated readers out there!  I promise to get better :)

This morning, at 8 am we had Blake's IEP meeting....the third one in the last 14 months.  This meeting was tremendously important, as it would outline the entire school year for next year.  For those of you who are unaware, IEP stands for Individualized Education Program.  All states have some form of IEP for children in the school system who require a learning plan tailored to their specific needs.  This allows the parents to be advocates for their children and during the annual review, they are able to voice their concerns and discuss the goals they have for their child in the coming year.

Blake just turned 4 in February, so due to Illinois laws, he will attend Pre-K for another year.  The 2013-2014 school year will actually be his 3rd school year.  The most fantastic news out of all of this, is that Blake will be able to return to our "home-school" (our district school) for next year.  He has been attending a school in another district because they offer the specialized Early Childhood class that he has been in.  It is considered to be a Special Education Pre-K for children with special needs.  His teacher, was singing his praises this morning about how far he has come in the 14 months she has had him in her class.  And as his mom, I couldn't agree more.  He has made so much progress.

Blake's IEP report is 16 pages long.  At the meeting were his current teacher at High Mount, his new teacher at William Holliday, the Principal of WH, the social worker for WH and High Mount, the OT of WH and High Mount, and the Special Education teacher at WH, and Kevin, Blake and myself.  Its a little daunting, and the meeting lasts merely an hour.  That's not a lot of time to try and get a whole entire school year in place.  However, one of the best things about Pre-K is seeing the teacher everyday and being able to work with her on an as needed basis.  After sitting with his future teacher today, I feel extremely confident that she "gets" Blake and his needs and will be a wonderful teacher for him.

But the truly, most amazing thing about this whole morning, is one little blurb in the middle of page 11 of the report.  It states that for the 2013-2014 school year, Blake will be 100% REGULAR EDUCATION and 0% SPECIAL EDUCATION.  His current placement is the exact opposite.  He is 100% Special Education now.  I am welled up with tears and emotion right now as I type.  And I understand and realize that this is only for this year, and when he transitions to Kindergarten, it will be a whole different ballgame.  But for now, and for the next year, my boy will be like all the other 4 year old Pre-K students.

I can't help but feel like rejoicing as I turn around and see the enormous mountain behind me, and look around the beautiful valley that I am standing in.  I ignore the giant mountain range that lies beyond the horizon.  Right now, in the moment, I feel as though I can breathe.  And I know that its just a piece of paper with some writing on it.  But it stands for how far we have come in the last 2 years.  It stands for all the tantrums and meltdowns that we have made it through.  And it stands for the countless hours of therapies and the nights I have cried myself to sleep, thinking I can't help my boy.  100% Regular Education!!  And even if its only for the next 12 months, I'll take :)

Jenn :)

4/1/13

LIGHT IT UP BLUE!!

Today is April 1st, 2013.  It is a Monday and it marks the start of National Autism Awareness Month.  I have decided to take this month and use my blog to raise awareness.  I have many friends and readers who have expressed what little information they have about Autism and what it exactly is.  Today, I will answer the what it is, and over the net few weeks, I will go more in depth about statistics and the far reaching effects of Autism.

As many of you already know, we have only been aware of Blake's diagnosis for a little over a year.  But we are not strangers to the disorder as my oldest half-brother, Grant, also is on the autism spectrum.  It has been a huge blessing to have my father and step-mom acting as mentors, as they have been forging this road for over 10 years now.  And even though Grant and Blake to not have all of the same characteristics  they do share some, and advice and help over the last year has been wonderful.

Autism and ASD (autism spectrum disorder) are both terms used to describe a complex group of disorders of brain development.  These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD.  ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.  Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age.  (Blake was diagnosed two weeks before his 3rd birthday.)

Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.

By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.  ASD affects over 2 million individuals in the U.S. and tens of millions worldwide.  Government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years.
Until recent years, there was no answer as to what causes Autism.  Through research, they are starting to discover that just as there is no one type of Autism, there is no one cause for Autism.  The clearest evidence of these autism risk factors involves events before and during birth. They include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. It is important to keep in mind that these factors, by themselves, do not cause autism. Rather, in combination with genetic risk factors, they appear to modestly increase risk.
Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means. Autism Speaks’ mission is to improve the lives of all those on the autism spectrum. For some, this means the development and delivery of more effective treatments that can address significant challenges in communication and physical health. For others, it means increasing acceptance, respect and support.
There is no test to determine if one has Autism, or ASD.  Physicians and/or psychologists may administer a specially designed autism behavioral evaluation.  After spending 1.5 hours in a room with us and Blake, a team of Psychologists, Speech Therapists and other therapists, diagnosed Blake as having mild to moderate Autism.  They didn't even need to leave the room to discuss it.  They already knew.
The Modified Checklist of Autism in Toddlers (M-CHAT) is a list of informative questions about your child. The answers can indicate whether he or she should be further evaluated by a specialist such as a developmental pediatrician, neurologist, psychiatrist or psychologist. (Take the M-CHAT here.)
Most of my information came from the Autism Speaks website.  Its a great tool for individuals who would like to know more about Autism and ASD or if you are a family member of someone with ASD.  Below you will find a chart showing the drastic increase in Autism diagnosis's over the years.  Autism Speaks raises money for research to study Autism and to one day find the answers.  However, there is a huge need for help for families with autistic children, especially as the lower functioning individuals reach adulthood.  My brother will be turning 16 this year, and my dad is finding there is a large lack of resources out there.
I thank you for taking the time to read up on Autism.  Tomorrow, April 2nd is National Autism Awareness Day and Autism Speaks asks the world to Light It Up Blue for the day.  So if you see a blue light tomorrow, you will know what it is for.

File:US-autism-6-17-1996-2007.png
Bar chart of the number (per 1,000 U.S. resident children aged 6–17) of children aged 6–17 who were served under the Individuals with Disabilities Education Act (IDEA) with a diagnosis of autism, from 1996 through 2007.

:)  Jenn

P.S.  For more information on how this relates to Blake, check out this post :)

3/26/13

Sometimes, all you can do is laugh :)

So, its been a VERY busy, and heart wrenching last few weeks.  We have been dealing with some extended family issues, and its definitely been taking its toll on my stress level!!  But through it all, I am trying to remain focused on me.  I cannot change others....I can only change myself, and the way I react in situations.  I am finding it is better to just LOVE in all things.  So thankful for a loving God who loves me, stains and all :)

Now on to my reason for today's post.  I was thinking today at how really amazing our God is.  I mean, I think that all the time, but I just had one of those WOW kind of moments.  He picked me to be the mother of Blake and Zoey long before he picked my mom to be my grandma's daughter and on and on.  He knew the difficulties I would face, and he knew that I would have a loving, generous man to face it with.  However, what really got me today is God's sense of humor!!  

Yes, you read that right.  I am, and always have been a spontaneous, fly by the seat of my pants, procrastinator.  And I certainly cannot be the only one out there!!  But the reason why this is so extremely funny, is because God placed two people whom I love with all my heart in my life who are the EXACT opposite....I call them strategically rigid.  (I am so coining that phrase!!)  They are my husband, and my son.

And this makes for a very....interesting....home life.  I am still trying to figure out how to be more structural for my son's sake.  I was never too worried about Kevin....he loved me stains and all just like God does.  I have shown him the Dark Side, and he likes it....sometimes.  But Blake, even though he loves Star Wars, not so fond of the Dark Side.  He likes the side with lots of rules and lights and everything in a straight line.  He'd make a really good Yoda.....

So every day, I try to bend him to my way, and every day we battle, because when I think I have prepared him enough, given him enough structure, he proves to me that its just not enough.  This little game we play is often time consuming and miserable.  But there are times, like now, when I can sit and see the humor in it all.


Touche God.....touche.

3/12/13

Why an elevator can cause a domino effect.....

I am laying in bed tonight and can't sleep. I have a knot in my stomach from an incidence earlier tonight with Blake, and as I lay here tonight thinking back on things, I see where we went wrong. Where as parents, we failed our child. And it's literally gut wrenching.

We asked a lot out of him tonight. And in return, we got a melt down. A bad one....one which left Kevin and I feeling like the worst parents of the year.

When I picked Blake up from school today, I immediately began discussing the evening's schedule with him, cause it was a doozy. First, I told him we would be going to pick Zoey up from school, then home to wait for daddy to get home. When daddy got home, we would head to McDonald's for an early dinner (there was a fundraiser for Zoeys school there tonight). After McDonald's, it was off to Zoey's dance class. An hour long event...an event where the last time we tried this for just a few minutes, Blake ran screaming through the halls and tried to run into the dance studios. Then after dance class, we would head to the hospital to visit Kevin's dad who had been admitted earlier. He seemed fine with it all, and I even asked him to repeat everything back to me. He nailed it! I knew he was comfortable because he could foresee the events and we could talk him through the night.

It all actually went very well, until the end of the night. Blake sat and played the iPad with Kevin during Zoeys dance class, while I sat in and observed. He was accepting of entering the hospital, and even did well with two elevator rides and winding corridors. He sat with his poppy and watched cartoons and then, he was done, and we left. We walked to the elevators. A door was opening. We walked on, while Blake stood screaming about the other door. The kind ladies laughed and held the door for us. Kevin finally dragged him onto the elevator and he laid in the floor until the door opened. He ran ahead of us down the hallway, obviously mad. When we got to the parking garage, and the next set of elevators, again the door opened, someone was holding it for us while Blake screamed about the other door. This lady, was not so understanding, and asked us his age, and then sneered that sneer I have seen one too many times, as if to say, get a grip on your child. Feeling defeated, we all left the elevator and Blake protested. We started to walk towards the car, and he came running out not concerned with the oncoming car. Kevin carried him to our van, and tried getting him in his seat. He screamed, kicked, threw things at us, and finally I forced him into his seat. My patience was gone, and I just wanted a cooperative kid who sat silently in his seat. Instead I had a screaming, thrashing boy who I lost my temper with. It wasn't pretty. And then Blake started crying for his Boo-boo...a small square blanket with a puppy head that rattles. It's his thing...his safety net....his thing that tells him everything is alright with the world even though his insides are churning. As I climbed in behind the wheel, my heart ached for him. I knew something was off, and it was more than him just not getting his way. But I didn't understand.

Later, as I looked back over the events, when I was calm, and my head was clear, I had a moment...like in those cartoons when the character has a light bulb over their head. It was so simple really, but I hadn't taken the moment to think about it. Blake likes familiarity. And when we were leaving, he couldn't tell us why, but he insisted we ride the over "door". The same "door" (elevator) we rode when we arrived, but it didn't hit me then. On the way out, it was two different doors...unfamiliar....scary. I had just assumed it was Blake being stubborn. It wasn't. It was Blake trying to comfort himself the way he knew how and I didn't understand.

I miss the boat so many times with him. Just when I think we are managing just fine, he throws another curveball my way. I just wish it was easier. That I could bring him comfort and safety some way.

Moments like that drain me in every way possible. I just pray that one day we can both understand each others worlds enough to make it through without emotions like these.

Jenn

3/11/13

Confession Time!!

My name is Jennifer.  I am a Laundry-avoidance addict.  I let my clean laundry pile up, until I have a basket full of unmatched socks, and have to spend the better part of an afternoon matching them up.  I have lost socks, and it drives me insane.  Clean, folded laundry can sometimes sit in a basket for up to a week (or more).  I have started paying my 7 year old to help with the laundry....in turn she gives me accountability for getting it done, and put away.

WOW!!  That felt good to get that off my chest :)  So, let's hear it...what's your confession?????

Jenn

3/6/13

Monday, November 14, 2005

Zoey Makenna Thomas, my firstborn, my little angel, my 7 year old sweetheart.  This is the story of how she came into our world.

When Zoey was conceived, Kevin was a SSgt in the United States Air Force.  We were living in a two bedroom townhouse on Scott Air Force Base.  I was working for a real estate company, and we had been married for 9 months.  We were both really excited and could not wait to start our family.

Everything was going along great with my pregnancy.  I was super sick for the first month and a half, and couldn't keep anything down.  I remember being in the car on the way to work and just praying that I would make it there in time to avoid puking in my car.  Then we had the 20 week ultrasound.  "It's a girl!"  we were told.  "See the hamburger?"  Yes, that's how we were told that our firstborn was a girl.  But then, the tech seemed to be taking her time, making more measurements, squinting her eyes.  Panic set in.  And we left.

At the next appointment, we discussed the results of the ultrasound, and that's when we found out that our daughter had a condition called Hydronephrosis.  Basically, one of her kidneys was larger than the other and had fluid in it.  The doctor explained that it was nothing to worry about and that she could outgrow it, but that we should have regular ultrasounds for the remainder of the pregnancy and a follow-up ultrasound after she was born to check the dilation.  And even though the doctor had said not to worry, I immediately did.  Regardless of the extremity of the condition,  I had just found out that my daughter could suffer outside of the womb.  

After continued ultrasound monitoring (which ended up being a blessing because I was able to see my baby 3 more times before she was born), we were told that there was no change, which was a good thing.  I felt relieved and was finally able to stop worrying about her.

I visited labor and delivery several times the week leading up to her birth....all times for contractions that were leading nowhere.  I know now, that those contractions were NOTHING!!  Then, on a Sunday evening, my contractions began to pick up their intensity and frequency.  I was 38 weeks and 6 days.  By midnight, after hours of contractions, and my wonderful husband's tricks to try and help ease my pain, I was ready to head to the hospital. Contractions were roughly 5 minutes apart, and radiating from my back around.  Back labor...yay me!!

When I got settled in my room, and they checked me, we received the glorious news that I had progressed to 5 cm and that we would be having the baby soon!!  I got up and walked the halls, and swayed around my room.  By the time I reached 7 cm, the tears were flowing, and the inevitable, it's now or never opportunity came for the epidural.  I was scared, and my husband and mom both convinced me that I was worn out and could use the relief, since 8 hours and passed and I was still several more away.  The epidural needle petrified me, but in the end, it was extremely bearable.  Within minutes, I was snoozing.  A few hours later, the nurses came in to tell me that my labor was slowing down (a side effect of the epidural) and that they needed to give me a drug called pitocin to speed the contractions back up.  They also explained that during a contraction, the baby's heart rate would slow down and they needed to use an internal fetal monitor.  Everything was happening all at once, and I felt like I was loosing control.  I rested some more, and they came in and told me that it was finally time to push.

I pushed, and pushed, and pushed, for over two hours, without any progress.  No one was telling me much of anything other than she was positioned wrong and wouldn't descend.  The doctor came in and told me that if she didn't come out soon, they would have to take me for an emergency c-section because she was loosing oxygen.  In a last ditch effort, the doctor came in and hooked up the vacuum extractor to help me with pushing.  The first push, the vacuum popped off Zoey's head.  And the second....however, the second time was much worse than the first, and there was a lot of blood.  The third, and final time the vacuum was used, we were able to get her out. 

I didn't see her, there was no crying.  She was rushed to an incubator across the room and 5 people (or more) swarmed around her.  Minutes later she was rolled out of the room.  I hadn't held my daughter.  I hadn't even seen her.  My husband looked worried.   My mother was in a chair with her head in her hands.  I was told that i had been given a partial episiotomy and had torn the rest of the way and that they would need to repair the damage.  So, as I lay there, helpless, no one was saying anything about our daughter.

I remember getting up off the table to go take a shower, and halfway to the bathroom I collapsed on the floor.  I was weak.  I couldn't walk.  It was then that I found out that I had lost a lot of blood, and would need to rest and use a wheelchair until my blood supply was regained.  While I was in the shower, a nurse came to get my mom and Kevin to take them to Zoey.  We still knew nothing except she was in the NICU, and my mom saw her when she was born and she was blue.  I couldn't see her yet.  I was so messed up on the inside, and my heart ached.

When they got me to my recovery room, my mom and Kevin came back and explained to me that Zoey was on 100% oxygen.  She wasn't breathing on her own.  She also had a hemotoma on her head the size of a softball.  When the vacuum popped off her head, it tore off part of her scalp and caused a fluid filled sac to form.  There was worry of brain damage and impairments.  They both looked defeated.  I was crushed.  I did the only thing I could do, and from deep inside my heart, I cried out to God.

When I was finally able to be wheeled down to the NICU, I was so excited to see her.  Friends of mine had come and gone, and they had seen my daughter before me.  I was not prepared for what I would see, or that I wouldn't be able to hold her.  I felt like there was nothing I could do.  So I sat there and just watched her.  

The next 24 hours were torture, but when they finally took her off the oxygen, and I was able to hold her, it was the most amazing experience.  I was still in a lot of pain, but I sat there just holding her as long as I could.  We were told that the worst was over, and I realized that this little 8 lb 5 oz bundle of joy was my little miracle.  God had answered my prayers, and had completely healed my baby girl.

We have many baby pictures which show Zoey's scar on her head....a reminder to us how God saved our little girl.  And now, 7 years and 3 months later, she is still my little miracle.  She amazes me every day of her life.  God saved her for a very, very special purpose....to save my soul.  I can't wait to see what else he has in store for her :)




Jenn-one proud mama

2/28/13

Seriously?!

For those of you who know me really well, you know that one of my favorite phrases is "Seriously?!"  I tend to use it as more of an exclamation, even though I tend to say it like a question.  Which is why when I write I use both punctuation's :)

In the last 24 hours, I have had a few of these "Seriously?!" moments.  Every last Wednesday of the month, Bear (Zoey) has a half day at school.  She always gets to ride the bus to and from school (she loves riding the bus), and arrives home about 20 minutes before we have to leave to take Little Man (Blake), to school.  They attend two different schools because Blake is an Early Childhood Pre-School class, and that is not something that they offer at our district school.  Its a smaller class size, and he does really well in it.  He only goes for 2 hours and 15 minutes a day, but it is every day.  Its a wonderful experience for him.

But back to the last Wednesday of the month.  I love it, because I get two uninterrupted hours with my sweet girl.  Its our thing now to go to Chick-Fil-A for lunch and then run an errand.  Yesterday it was grocery shopping at Aldi.  I had taken my Household Binder with me to lunch so I could use my meal plan to make my grocery list (That thing is sooooo handy!!!  I totally recommend one for every mom!)  When I opened it up, I noticed in one of the pockets I had some printouts from the iMom website (a wonderful tool for moms) entitled Kid Conversation Starters.  I figured I would ask Zoey a few of this, to keep the conversation up while I was working on the list.  I started off with a few easier ones, and then I asked her to "describe the person you would like to marry".  I thought that would be a good, thought provoking one for her.  She giggled a little and acted kind of shy, but then said, hmm....let's see.

Here was her list: (and yes, I wrote it down on the back of one of my binder sheets)

1.  Believe in God (yes, that was her first answer, I almost started crying right there!!)
2.  Nice attitude, and treats me nice (good one Zo)
3.  Someone who is lovable (Huh?!  She better mean like a Teddy Bear!!)
4.  Someone who cooks (Wow, didn't see that one coming)
5.  Someone who changes diapers (Cause, she doesn't plan to)
6.  Someone like daddy (Awwww!!)
7.  Someone who prays

I have to admit, I expected a juvenile list, like someone who likes the playground and playing video games.  But I should have known better.  Bear is such an amazing 7 year old.  And its nice to have that affirmation....you know, the "Hey, maybe I am not screwing up this kids life" kind :)

So that was the first Seriously?! moment.  The second was this afternoon when I picked up Blake from school.  Thursday's are Library days for him, and they even let them bring home books.  Usually its something about cars, trains, or a Berenstain Bears book.  Today, I asked him about library, and if he got a book.  He laughed, and told me he had a surprise for me.  He said he got a spider book from the library.  He said Aiden (a boy in his class) had it last week so he got it this week.  I of course, assume he means Spider-man   So we get home, and as soon as we get in the house, he tells me again about his surprise book. I tell him get unpacked and hang your coat up and then you can show me.  He does, and then comes running into the kitchen with his book, and proceeds to shove a HUGE, HAIRY, tarantula into my face!!  Yes folks, my 4 year old son brought home a book filled with pictures of the things I fear most in the world.  My heart started racing, I screamed (okay, just a little scream), and Blake laughed!!  He thought it was hilarious   Which made me stop and think....he knows of my fear, and how I do not like spiders....so was this a joke he was trying to play on me?  Was this some premeditated thing where he actually thought, "hey, this would really scare the poop out of mommy"?  Cause if he did, then I have to smile.  Because it means that he was actually thinking about HOW I would feel about something, even if it was fear.  I still don't know the answer, but it really blows my mind!!

So I did what all moms would do (even those deathly afraid of spiders).  I stood far enough away and watched as he flipped the pages and talked about the taco spider (yes, it did sort of resemble a taco), and the pumpkin butt spider (yes, it had an orange butt) and the pumpkin face spider (guess that one got to close to pumpkin butt).

Wait, I hope this isn't becoming some thing he is getting into....remind me guys, if Blake asks for a pet spider one day, that it doesn't matter how much I love that kid....a spider would make it so that I can't even go in my own house!!  And yes my friends, THAT was my second "SERIOUSLY!!!!????" moment of the last 24 hours.  As I sit here typing, I know that book is in my kitchen.....and it's totally FREAKING me out!!  I will let you know if i make it through the night.

Jenn :)

2/27/13

So, what is my part?

In this house, I have many, many hats.  Nurse, masseuse  chef, maid, chauffeur, banker,  etc.  At any given time, I could be wearing two or more at once!  Whomever says moms have no talent, is sadly mistaken :)  We have many!!

I often feel like I am in a secret play, and Blake holds the script.  He likes to play games where he asks a question, and then solicits a certain response from you.  You give him the correct, or appropriate response, however that is often times not the response he is looking for, and instead feeds you a line that he wants you to say.  He is forming his own cinema at the ripe age of 4.  Hmmmm.....wondering where his peak will be?!

However, he can get extremely frustrated with you if you do not know what response he is looking for.  Sometimes he could be asking about whether its raining or not, and when you tell him no, he promptly tells you that the obvious answer should have been yes, even though its a bright sunshiny day!  Actress in one of Blake's theatrics is by far the hardest hat I have to wear in a day.

There are days when I struggle to wear all my hats, to play all my parts.  And some days, I am playing parts that I do not have a script for, like in Blake's plays.  I barely make it through some days with any skin left on my teeth (I have no idea where that saying came from.....I mean, who really has skin on their teeth?!).  But at the end of each day, I am often forced to see where my blessings really are in life.  I have two amazing kids, who challenge me, and stretch me way beyond my comfort zone.  But who really wants to be comfortable anyway!  And don't even get me started on my husband....my amazing example of a man.  A man who truly loves me like Jesus loves, flaws and all.  A man who is gentle and forgiving.  One who compliments me in all the best ways.  We don't always have all the right answers, but we are forging ahead, trying to get it right.  Trying to figure out what works for our unique little family.

Last night, as I was massaging Blake with some lavender lotion (it really helps calm him down for sleep), Zoey asked if she could be massaged too.  I sometimes forget that my independent little thinker needs just as much attention, if not more, than Blake requires.  Its a hard balance.  One I still haven't quite figured out.....when am I smothering, when am I too elusive.  All I know, is that playing my part as mom, is by far the best part I have ever played.  And even though life around here can be cray cray, and overwhelming, it is my life.  My so very blessed life :)

Jenn

A verse that I have been focusing on lately

Dear brothers and sisters,[a] when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

James 1:2-4

2/25/13

Sunday, Funday!! Monday, Run-day!!

Yay! It's Monday (<--- dripping with sarcasm).

Anybody else out there feel this way?

I love Sundays in our house. They are almost always filled with church, fun, naps, TV watching, family movie time, and then more church :) Sunday nights seem to be more difficult....trying to get the kids back into routine after the weekend, and we usually end up with grief and complaining from both kids!

Then, come Monday morning, it's as if I have poured ice water over their sleeping bodies! They arise with contempt for me. Oh how I wish Monday mornings could go smoothly.

Shortly after Zoey has been shuffled out the door to catch the bus, Blake and I rush around (definitely his least favorite activity; he hates being rushed) to get out the door and head to Occupational Therapy. Most days, it's 3:30 pm, and I have absolutely nothing to show for my Monday. Mondays are an extreme waste to me. I would much rather sleep through them all and awake on Tuesday :)

We had a pretty typical weekend. Kevin and I attended our church's banquet honoring the volunteers who serve throughout the year, and I won a prize for a date night; movie and dinner!! Then on Sunday night, Zoey found out she was chosen as one of the speaking parts for the musical the kids choir will be putting on this spring. She was overjoyed! The look on her face was priceless. And it was Blake's first (and possibly last for awhile) attempt at kids choir. Personally, I just don't think he's ready for all the sitting, and focusing and paying attention :). And if you were a witness to the whole mess, then you know exactly what I mean!!

So now, it's gone well into Monday evening even though I had every intention to get this posted while at Blake's therapy this morning. I always start off with the best intentions :). There is a peaceful rain outside and I am enjoying it. It's relaxing me and helping to erase and wash away the stress from yet another Monday. Tomorrow is another day.....and I will arise tomorrow with hopes of a better day. We can only go up from here!!

Jenn

2/22/13

Autism as WE Know It

Let me make something clear....I DO NOT want Autism to take over this blog.  While it is true that Autism is a huge part of this family and in turn dictates how we handle certain situations, I want this blog to be an outlet....a little peek inside this cray cray world we live in.  I want it to be so much for you, the reader.  A lesson, an experience, an outlet as well, and maybe even a pat on the back.  A reminder that we ALL have those days :)

So with that being said, today's blog is about Autism ;)


I realize that many of you are not familiar with Autism, or Autistic Spectrum Disorder (ASD), so I thought I would take today to tell you what it means to us.  Many different features or characteristics are shared by people with ASD, however, there are no two people with ASD who are the same or who share the same presentation.  There are three specific areas of behavior which have to be present in order to make a diagnosis.  I will list these areas and their specifics, and then underline the ones that apply to Blake specifically.

Impairment of Social Interaction
-     Difficulty in understanding the non-verbal aspects of social interactions, such as being able to understand facial expressions, turn taking in conversation and understanding what is going on in the other person's mind.
-     Difficulty in making friends and interacting with people of the same age and preferring to associate with younger or older people.  (However since enrolling in school, Blake has gotten better at this.)
-     Not seeking to share experiences, objects, activities or space.
-     Difficulty in sharing social and emotional interactions with other people.

Impairment of Communication
-     Absence or significant restriction of spoken language.
-     Difficulty in engaging in conversation with other people by listening to and responding to what the other person is saying.
-     Using stereotyped/repetitive/idiosyncratic language.
-     Having no interest in participating in spontaneous make-believe play with other people of the same age.

Impairment of Activity and Interests
-     Encompassing and restricting preoccupation with a small range of ideas or things or topics.
-     Obsession with ritual, order and repetitive behaviors.
-     Showing repetitive motor mannerisms such as hand flapping, singing or making particular noises.
-     Preoccupation with parts of objects which interferes with understanding how the whole object works.

So far, no one has yet discovered exactly what causes ASD. There are a whole lot of theories, but none have actually been proved or gained acceptance in the medical field.  ASDs do tend to run in families.  In Blake's case, he has an uncle who had ADHD as an adolescent and an uncle who also suffers from ASD.  Both of which are my brothers.

With neuro-typical behavior, most of us resolve conflict over time by the use of rules, social norms, values and the ability to negotiate and compromise based on an understanding of what might be going on in the other person’s mind and what might be motivating them.  A person with ASD does not do negotiation or compromise.  They are not able to do a lot of things that allow them to be able to get along in a group (a family, a class, a school playground, or a workplace).  It's not that they do not want to be a part of the group.  It is simply because they do not know how to act within the social norms of their peers.  This one single attribute alone has forced Kevin and I to reevaluate every interaction with Blake and try to explain social situations to him.  Its hard, and most times telling him that's just the way it is doesn't always fly.

A very big area of concern for Blake are his senses.  We all take our senses for granted.  Pretend that you have no control over the signals that your senses are telling you.  Maybe the touch of clothing is unbearable to you and you can't switch that feeling off all day.  Voices are just noises and you can't respond to people because you can't decipher between the noises and the voices.  An ASDs world is STRESSFUL....everything sets their nerve endings off.  What we see as beautiful and lovely, they see as a problem, or something that causes stress.  A person with ASD is literally hard-wired differently then we are.

One area of our lives that we are still struggling with is the sarcasm.  We are a sarcastic household.  I get it from my dad, and Kevin, well it just comes natural to him :)  But in an ASDs world, there is no sarcasm.  They don't get it.  Non-specific instructions are bad too.  For instance, we cannot say 'Stay out of the street'.  Instead, we need to say 'Stop your bike at the end of the driveway'.  Or 'You're the apple of my eye'.  Instead we should say 'I love you very much'.

And we occasionally have meltdowns to deal with.  I say that because this is one area that seems to be improving more than all the others.  Meltdown triggers tend to cluster in certain areas.  One book describes four of these areas.

1.     Sensory Overload
2.     Physical/Physiological triggers:
          -     Food allergies or sensitivities
          -     Sleep disorders
          -     Gastrointestinal problems
          -     Inadequate nutrition
          -     Biochemical imbalances
          -     Unarticulated illness or injury
3.     Emotional Triggers
          -     Frustration
          -     Disappointment
          -     Maltreatment
          -     Sense of fairness
4.     Poor examples from adults

Blake's triggers usually fall in the Sensory overload or Emotional trigger category.  Frustration is huge for him.  He gets frustrated a lot for not being able to do something he sees others doing, and not realizing that he is still growing and learning how to do some things just takes time.

I have so much more that I could discuss with you on this, but this post is already longer than I had anticipated!!  So please, ask questions in the comments and I will respond with the best answers that I have :)  I hope that I have been able to show you a little bit about what it means to be autistic.

Jenn

2/21/13

When it snows, it sticks!!!

Today, our kids received their first snow day of the school year....in February!! Tomorrow has already been cancelled as well. We had sneet, then snow, then freezing rain. We watched out the window periodically as the many forms of cold and wet precipitation flew by the front picture window. And on TV we watched as they showed car after car stuck in the slushy stuff on the roads.

And all of this reminded me of Blake. Of his many layers and forms and how sometimes we as a family can get stuck, literally, in one area. But then suddenly, almost as if by blunt force, those built up layers are plowed away and what is left is a happy, smiling boy. How something as beautiful as snow can cause such a mess....how something like Autism can cause such a mess. But if the right tools are used, both messes can be cleared away.

I love when God uses things like snow to show me the bigger picture. To remind me what's under all those layers. Clean pavement to drive on, or a smiling boy to cuddle with.

Today was a rough day. Daddy stayed home too and after watching the reports of the roads across the river, it's a good thing he did. It's as if the kids know that we're all stuck together in this little snow globe and can't get out. So they walk (or rather run) around all day shaking up the globe until mommy and daddy are ready to break out the hammer and start banging their way out. Tomorrow will be more of the same....sensory overload for one child, and a non-stop firing squad of questions and stories from the other.

Yes, yes I love my children and yes they truly are my blessings!! But did I mention that I woke this morning with a full blown head cold?! Snow day and head cold, not such a good mix for mommy's nerves. I think I may need to have a heart to heart with God about that one later :)

And now, as the day is ending and the sun has set, a chill has settled upon the house....like one that can only come from a blustery snow storm. Oh wait, what's that you say? The furnace isn't working? Oh.

So, 3 out of the four seasons bring us this lovely line....When it rains, it pours. But only in winter can you truly use this one....When it snows, it sticks. And makes your house extra cold. And causes your furnace to stop working. And has your children acting like wild animals.

I used to love snow........

2/20/13

Why not?

Today seemed like a good day to start something that I have been meaning to do for some time.....a blog.  I had tried this once before, and I must say, like most things in my life, I procrastinated about it, and soon it became a chore and stopped being something I really wanted to do.  But now, I desperately need an outlet, a venting platform and hopefully an audience who can sympathize, empathize, or sometimes just laugh with me through some really hard days.

I am Jenn, a wife and mother of two.  But that doesn't really define me.  I think recently I have let it define me and even let it be my excuse.  I am so much more than that, and I can accomplish so much more.....if only so much wasn't required.

In the last year I have added a new title.  Advocate.  I am now my autistic son's advocate....well, Kevin (my husband) and I both are.  We are Blake's voice when his is nothing but shrieks and screams and unintelligible mumbles.  We stand in for him to see that he is treated fairly and is given the same chance as any other 4 year old boy.  We like to think that we are effective.  That we are helping.  It gives me something to do other than worry about the future.

The future.  A huge unknown in our lives right now.  The next 6 months could bring a whole new slew of trials.  My bag of tricks now is like a weird mix of calming videos, iPhone Apps and candy.  Tags must be cut from all articles of clothing, and simply hanging up a coat on a hook can cause a meltdown.  I never know when and if something will effect him.  Its a daily learning process.

Take today for instance.  The dreaded 4 year check up.  Discussing Blake like he isn't even in the room (however, in some ways, he never really is in the room even when he is) and referring to him as developmentally delayed.  It breaks my heart...into a tiny million little pieces to hear him referred to like that. But its true.  And it still hurts.

And then we have the vaccinations.  I hate vaccinations....like truly despise them with all that I have.  I don't want my kids to have them.  We have proof that Blake has toxic levels of heavy metals in his body, heavy metals that they add to vaccinations to make them last longer.  I do not like wondering if I did this to my son.  If letting the nurses inject him a dozen times before he was two with chemicals and heavy metals somehow caused this "developmental delay".  But I can't not give them to him.  Because what if he does contract polio, or a deadly strain of pneumonia and then he dies.  Because I didn't give him the vaccinations.  I would rather have my beautifully minded autistic boy, then to not have him at all.  So I despise vaccinations for all the turmoil and guilt that they present to me.  He needs 4 before Kindergarten, so today he got two.  And the guilt weighs heavily on me.

There are times when I am just so overwhelmed with idiosyncrasies.  Like the insisting that Daddy is home, when his car isn't in the driveway and he is nowhere in the house.  The iPhone app that all he does is scream at because its so hard, yet is the only one he consistently demands to play.  Or TruMoo chocolate milk being the ONLY chocolate milk (or anything else for that matter) he will drink and the only place you can find the gallons of it is at Target.

Then there are times, like now, when he comes to me with a rather large blanket and asks to snuggle.  My days as a mom are a constant roller coaster of emotions.  But believe it or not, its those emotions that keep me grounded to the ground

 :) Jenn