Face of Adversity

The Face of Adversity. It can seem like such an ugly face. Everyone has one. Different degrees, different levels. But everyone has one. How does the saying go? "Adversity makes you bitter or better." Which will you choose. It's so easy to get bitter very quickly, even after you have gotten better. It's a slippery slope. See, when one loses hope, one loses motivation. And then you start to slide. And it seems as though adversity is the vehicle taking you down to your rock bottom, stripping away everything you ever thought was "yours" or eveyrthing you thought you were entitled to. Sometimes its hard to choose better, especially when the future is unknown. The fear of the unknown can be paralyzing, stopping you dead in your tracks. At the end of the day, through all the tears, the frustrations, the anger, the hopelessness, and the fear, you have to find that light. That small little light at the end of the tunnel. Sometimes you need a magnifying glass, but it's there. I'm choosing to hold onto that light. You have to face the clouds to see the silver lining, and cling to your God who holds your tears in a bottle.

Update:
We had to return to the ER last week to get Annie evaluated for a bowel obstruction. She had to have an IV and be admitted and cleaned out. She endured alot but still had a smile of that petite little face of hers. They drew more labs and we had yet another elevated lactic acid. We are not sure what this means for Annie. We are being referred to another neurologist. We've been warned that she may have to have a muscle biopsy. Two of her three doctors are leaning towards a mitochondrial disorder. If in fact, she has this, it would explain autism due this disorder making one much more susceptible to autism. It also tunes me into the fact that Bella and Joslyn could have the same thing since it is genetic. We just don't know at this point.  The fear of the unknown yet again. Since then we have put Annie on probiotics and digestive enzymes. We are also doing this for Joslyn because she has major intestinal issues as well. Our DAN doctor recommended Hyperbaric Oxygen treatments (HBOT) but they are extremely expensive so we cannot do that at this time. Its sad to know your child needs something and you cannot provide it for them. It sends mommy guilt into full throttle. God knows what she needs and I have to rely on Him to provide for her. We are doing well, though. We have a strong family. Joslyn is blossoming in preschool as well as Annie. Bella still cries, alot. But when she smiles, she captures my heart. I went back to work. It's tough to work nights and be ready to function for three kids on Monday morning. But you do what you have to do. Josh is doing well at his job. We rarely have family days due to our working schedules but we love each other and try to not let the stress affect our marriage.

We are trying to get Annie into a couple state programs to help get her therapists. Its not going very well. Its hard to convince the state your child needs help. Honestly, I don't know how bad a child needs to get before they deem you worthy of services. Please be praying that she receives Impact Plus services.

Also I will be shutting down my facebook on Nov 1, 2010. I've said before, its my measely attempt at raising awareness for the communication challenges that children/adults with autism face. I wish I could get into Annie's head and see the world through her eyes, and not just shut down FB for one day. Its a nationwide thing. Shut it down, in honor of those who face shutdowns multiple times a day.

Two steps forward- Five steps back

It has been a ROUGH past week to say the least. We have gotten to the point where we can no longer take Annie out in public. Last sunday, we attempted to do a family outing that consisted of going to a pumkpin patch. We left about 15 minutes after arriving. Annie had a pretty severe meltdown. Little did we know we would end up at Children's ER later that week and that these meltdowns would become so severe that we had no option but to go to the ER.

Annie began having very scary screaming/crying episodes. Not just screaming like a normal tantrum. I mean scary screaming. I hate to even say it, but it looked like she was possessed. This happened all throughout the week, getting worse by the end of the week. Thursday I received news from her developmental pediatrician that her Lactic acid came back high. This is worrisome. It means her little body is acidic for some reason. Could be some kind of metabolic disorder. Which, of course, we don't know yet without more labs. She said she wanted me to go back to the hospital to get a liver profile (to check liver function), amino acids, ammonia, and another lactic acid. It worries me she might have a mitochondrial disorder. We pray thats not the case.

Friday morning, I decided to head to CCHMC lab to get the blood. However, that morning, she began one of these "episodes" and she displayed a new symptom of banging her head against the wall. This is altogether heartbreaking to see your child so miserable that she has to bang her head to take the attention away from what she is trying to deal with. This lasted for 2 1/2 hours. I decided to take her to the ER. I couldn't take it anymore. Who knows what it could be. Is she in pain? Does she have a psyciatric problem? WHAT?!!??  I tried to figure out what we had done with diet or supplements or ANYTHING to cause her to act this way. I came up with nothing. I had decided to catch some of these episodes on tape so I could prove to doctors she really was having problems. Off to the ER.

I explained to every doctor and nurse everything we had witnessed. Showed them the tape, and of course, their eyes got bigger and bigger. They had a psychiatric social worker come in and evaluate Annie. She suggested we might have to put her in Children's psychiatric inpatient program to iron things out. Another sucker-punch to the stomach. THAT was a low-blow. I actually felt like an elephant was sitting on my chest. I kept looking at the social worker and back at my mom. My mind was racing all over again. Everytime you hear something like this, its like the dreams of what you want for your child die all over again. And I began to cry. Again. I said I wanted to hold off on admitting her. At this time, my gut was screaming no at me. I listen to my gut feeling because I really believe God is putting it there. Its been right every other time.

I talked to another doctor and he brought up her history of severe constipation. As almost ALL children with an autism spectrum disorder has bowel dysfunction also. But then again, I wouldn't expect mainstream pediatricians to know this. We have been on Miralax for about a year and a half. Along with every anti-constipation remedy out there. With no success. We did a belly x-ray and it showed her intestines were completely full of stool, even  though she has 2- 3 bowel movements a day. CCHMC suggestion? To clean her out with miralax. As if I hadn't done this A MILLION and one times. I asked them how to deal with this long term seeing as how it comes back EVERY TIME and with a vengeance that's always worse than the time before. The doctor had no answer. How do I potty train this child with severe bowel issues? Again, no answer. No help. Why did I expect anything different? We are really hoping these episodes are because she was in alot of pain. The social worker ended with if she continues to be like this, that I should call her back and have Annie admitted. Thanks.

Next call is to Dr. Demio (her DAN! dr.) this thursday and explain our situation and seek his expertise. He is wonderful and wish he would move to cincinnati. :)

Now I am waiting. Yet again. Waiting for labs. Waiting for a resolution. Waiting for an answer and fighting the system. I have already called another state program which Annie qualifies for. It would provide another therapist. The program is to help stabalize children with emotional and mental disturbances and keep them out of an institution/hospital. I have a meeting tomorrow morning with a social worker concerning this. I hope THIS state program can help us. I close with a song I have listened to over and over this past weekend.

Kutless

I'm Still Yours

If You washed away my vanity
If You took away my words
If all my world was swept away
Would You be enough for me?
Would my beating heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives and takes away

If You take it all
This life You've given
Still my heart will sing to You

When my life is not what I expected
The plans I made have failed
When there's nothing left to steal me away
Will You be enough for me?
Will my broken heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives
And takes away

If You take it all
This life You've given
Still my heart
Will sing to You

Even if You take it all away
You’ll never let me go
Take it all away
But I still know

That I'm Yours
I'm still Yours

Oh, I'm Yours
I'm still Yours
I'm still Yours

Annie and her Mountain

September 20, 2007- Routine OB check up at 35 weeks 5 days. Dr. Livingston comes in and asks, " Are you ready to have some babies?" Of course I was ready. I had two heads up near my stomach and I was throwing up acid every night. I didn't think my abdominal muscles could stretch anymore. I was measuring at about 47 weeks. But I couldn't shake the fear within. Fear of the unknown. Will my babies be ok being born this early? Would today change my life for forever- good or bad? I looked at my mother, one of three people who could keep me sane and I said I have to call Josh and see Sharlyn before I go. After being at the hospital and my blood pressure climbing over 200 I was rushed back to the OR to have an emergency c-section. Out came the 2 most precious little squirmy things I had ever seen in my entire life and I knew. I knew they would be ok. Everything was out of my control, yet I knew. I held my babies 6 hours after I delivered them. Amazed, shocked, and crazy in love I fell with these two babies that were safe inside only 12 hours before.

Everything was going along just how I thought. Smiling, laughing, cooing, talking, walking, yes this was the life.

April 2010- Early intervention brought in for Joslyn due to major eating issues. It was found she had a speech delay and needed occupational therapy for sensory issues with food and speech therapy for a delay. I thought to myself well if Joslyn is speech delayed, what about little Annie.

Florida Vacation and boy was it rough. The ride down was much harder than it was when they were 9 months old. Annie just seemed to cry and cry and cry. Well, she is a toddler now. Yes, that's what it is. It was then, on this very vacation, we all noticed something horribly wrong. Annie had a meltdown for an hour and a half. Sheer loss of control took over me as my child was in her pack n play in the next room kicking and screaming. I had to put her there to keep her safe. Josh, my mom and I just stood there with blank looks on our face wondering what this was and why. Meltdowns continued throughout our vacation and most of the time in public places with alot going on. Terrible twos. THATS IT! Yes. Whew, glad I solved that one.

July 2009- Annie enrolled in early intervention therapy with speech and occupational therapy for severe sensory processing disorder and a major speech delay.

October 2009- Good family time with mom and dad, my husband and my girls. Sitting around talking, Annie starts to spin and is always on her tip toes and, "OH MY GOODNESS, mom look at her, isn't that cute? Look Josh,she's spinning around in circles and her eyes go to one side and she's not even getting dizzy, she's so goofy."

November 2009-Somehow began reading Jenny McCarthy's book about her son who had autism and BOY am I glad I don't have a kid with autism. I'm really glad I have a girl. And I'm pregnant, again.

December 2009- Reading the book thoroughly. Thinking to myself, " Annie toe walks. Annie spins herself in circles. Annie has some big developmental delays. Annie has some wild tantrums and meltdowns about trivial things. Annie doesn't have good eye contact. Annie doesn't look into the lens of a camera anymore.Annie can't handle new situations or alot of people." And the realization came in through the back door of my mind , even though I would try to fight it for the next several months while getting my daughter help for her "sensory processing" issues.

February 2010- ADHD, thats it. Yes, ADHD COMBINED with sensory processing disorder. "Not autism. Not my child. Its too expensive and my child will not be quirky", all the time wondering what these weird body movements were all about and why she was doing them. But yes ADHD is why she's running back and forth all over the living room all day everyday. And the OT said herself she's tip toe walking because she wants more sensory input through her feet. So SEE, NOT AUTISM. It's not.

April 2010- We FINALLY got our intensive level evaluation scheduled for June. You know to rule out autism and rule in JUST ADHD. It only took a year.

May 2010- In Barnes and Noble looking at books and came across 'Healing and Preventing Autism'. Left with my 'How to Pottytrain' book. Went out to my car 6 months pregnant, buckled my seat belt and cried. I cried really hard. I had succombed to this monster of an idea that autism had taken over my daughter. I sat there for what seemed like an hour. My friend wrote about her daughter and when I read it, it was like hearing myself. She says, "I remember holding her arms talking to her and it felt like my heart was coming up through my throat and it just wasnt getting me anywhere with with her. feeling like I wanted to reach her, like I was in some other realm that where she was. As if she was in the clear bubble and I would bang away and there was no response, never breaking through to her."

 I called my mom. "I'm sitting here facing the idea that Annie probably has autism."

June 8, 2010. Evaluation at New Perceptions by a team of 5 people. Developmental Pediatrician, Occupational Therapist, Speech Therapist, Psychologist, and a coordinator. They bombarded Annie with questions and approached her with different toys and interacted with her. Or at least tried to.
I sat there with my baby girl feeding her lunch while the previous 5 people were in another room sealing Annie's fate with a diagnosis. " Maybe they'll just say ADHD." It was like two voices in my head constantly fighting with each other but I knew which one was right. Never second-guess mommy's intuition. I sat there while all 5 people sat around us. Josh was at work and waiting to hear. "She's a hard one to crack, but at the end of the day, we believe Annie is on the spectrum." Why was this so hard to hear? I knew it. I knew this. Why did it just feel like someone sucker-punched me and then said, "K, have a nice day, out you go." I looked at my little girl spinning while looking at her hand. Round and round and I couldn't help but wonder what life holds for her. The doctors advice on "what to do next" was drowned out by the fear of the unknown. So while practially running to my car with Annie in my arms, I realized that it came back full
circle to the fear of the unknown. Back when I was pregnant with this precious child. Would today change my life for forever? Good or bad? I cried so hard I couldn't breathe. I cried for my baby girl while being pregnant with our 3rd baby girl. I cried at the unknown. Can I pull her out of this? Will she get made fun of? Will she have friends? Will she get married? Will she stop spinning? Will she stop shreiking? I looked back at that innocent face and my heart was crushed.

I came home. I cried to Josh. I cried to my mom over the phone. And then I got to work. The next day I called a number and put Annie on the waiting list for a much coveted waiver that allowed for ABA therapy, a staple treatment for Autism that run 40 dollars an hour. I asked myself, " Where is my daughter and where do I need to get her? I applied to Medcaid under a developmental delay. I got it in 4 weeks. Next came the

approval for the much coveted waiver for ABA therapy. Throughout this time, I got my daughter in with one of the TOP Defeat Autism Now! (DAN) doctors- Dr. Demio with an extensive training in toxicology and went into the Biomedical treatment route. My Annie is in occupational and speech therapy and they have developed a way for her to communicate (verbal but has many limitations) her wants and needs through pictures. She caught on fast, that Annie. We will be adding behavioral therapy (Applied Behavioral Analysis-ABA) and physical therapy.She also goes to preschool 4 days a week for 3 hours a day along with Joslyn where they both receive speech and occupational therapy for Joslyn has speech delays and motor planning problems.We are starting her on a host of supplements. Started her on a gluten-free, casein-free, organic, no preservatives or additives diet ( we work really hard to weed it all out). We are testing her for strep, heavy metals, yeast, allergy panels, immunoglobulin panels and I could go on and on. All that matters is we are on a road to recovery. She may not recover all the way. But I won't go down without a fight. I don't have a white flag behind my back. My guns are out and loaded. I will always fight, always-until I draw my last breath.