The Craziness of it all

I am sorry I have not updated this in a while. Life has gotten the better part of me. I'm not even sure where to begin. We will start with the easiest.

Joslyn:
Ham! She can be the best little helper or her sister's worst antagonizer. She really knows what is going on. She has asked for roller skates for christmas. I'm not sure what to do with that request being as it is December. She has no idea Annie has autism. I like it that way. To her, Annie is her sister. I fear the day when she might resent Annie for her disability and then might resent us for everything we do to try to help Annie. Right now, she knows no disability. She just sees Annie and it breaks my heart that one day, she may recognize Autism. Joslyn, you are my big girl. I always ask you if you're my girl and you always answer yes. Then you ask if I'm YOUR girl. I always answer yes! You come up to me and give me the biggest hugs around my neck, look straight into my eyes, and say, "Mommy, I LOVE YOU!" Keep em coming. Sometimes, when I feel I can't go on, you give me one of those hugs and my heart jumps. You keep me going. I love you and I hope you don't ever resent me and daddy. I hope you see we love all 3 of you with a passion unlike any other. I know you will get a lot put on your shoulders but I pray you handle it with grace and mercy. I love you so very much Joslyn Emerie Havel.

Bella:
Spitfire. That little thing has some attitude. She is so little but packs a punch. She doesn't take anything from her big sisters. She gives it right back and has made THEM cry. She doesn't mess around. Bella is 17 months and is not talking, at all. I can get Mama and shhhh shhhh. I called in First Steps, again. It is Kentucky's Early Intervention program that both the twins were in. Here we go again. These were the people that referred me to New Perceptions, where I got Annie's diagnosis. It was a stab to the heart when I had to call them for my 3rd child. She was evaluated by a developmental interventionist and there was cause for concern. She is at an 8 month developmental age for expressive language. So again, we have yet a problem with communication in our house. Bella will qualify for speech therapy, which makes 3 out of 3 children receiving speech therapy. My house might as well have a revolving door on it. Someone in my house almost everyday of the week for therapy. She really has no signs of autism. I hope that continues. I'm not sure if my heart could handle another diagnosis.  Bella, you make me smile. You are just what I need on those days when I need a hug. You snuggle up to me and when you give me kisses, I feel like my heart will melt. I see both your older sisters in you but you are completely your own little person. For a baby with no words, you make yourself heard, which is reassuring. I love you Bella Boo. You are my baby and I cherish how small and little you are, cause I know it won't last long.

Annie:
We are continuing to wait for Annie's service dog. June 5 through 15 is our scheduled training class. We are very excited. Everyday she goes without the dog is another day we are made abundantly aware of  how much she needs it. We cannot wait. She doesn't really understand but when we get the dog, it will change her life. We recently had to change our ABA therapist due to scheduling conflicts. Kristina brought Annie a long way and we will be forever grateful for that. She will be documented as an integral part of Annie's journey. We are working with a new ABA therapist. Her name is Courtney and we are excited to experience the growth she will bring to Annie's life.  We also applied for a home alert system through the Michelle P. Waiver. It was months ago and I'm still waiting. This is not uncommon. You apply and then you wait. This alert system will help us know if a window or door has been open so we know if Annie got out of the house. The best part is, we will be able to take this system with us when we move. We are looking at bigger houses. When we moved to our current house, it was just the twins with no thought of a 3rd baby. I shoulda known better. We would like to stay in our current location and school district because I believe we have the best structured teaching classroom teacher on the planet. We love our Ms. B. She is incredible and we are blessed to have her advocating for Annie everyday. She, also will go down as a huge part of Annie's journey. Chelsea is still working with Annie and I couldn't be more thankful for her. She takes Annie out in the community and works on waiting and turn taking, transitions, and calming down. She is just fantastic and would love her to be a live in nanny but she wants to get married. You can't win em all. She has been such a huge presence in Annie's life and has made Annie be at her best.
 Annie is still not potty trained. It is the ugly part of autism. Every time I change her pull-up, autism is there, reminding me it hasn't gone away. She with holds her stool to the point that her colon is so distended that she can no longer feel the urge to go. She smears in her pull-ip upwards to 10-15 times a day. We went to her GI doctor to sift through options other than rectal botox. We are keeping her on a regimen of miralax and senna. All you biomedical people are probably shuttering but I've tried all the biomed ( for her gut) and it hasn't worked. I can't keep letting her do this or we will never get it under control. A few weeks ago, I researched a top psychologist in the area of autism and encopresis (withholding stool, constipation, etc) at Cincinnati Children's Hospital. I emailed him and he told me to get back to my GI dr's and ask for a referral. So that is what I did. I told Dr. Kaul ( GI) I was not interested in Rectal Botox but that I wanted to work with a specific psychologist who dealt with what Annie has. He said, " We work with our own psychologists." I told him I wanted this specific doctor. He asked who I was talking about. It happened to be the same person he had in mind and he just so happened to be at the office. Keep in mind, I almost canceled the appointment, 1) because it was all the way in Liberty Township which is an hour away, and 2) I didn't think he would do anything for us. Dr. Mellon came in and talked with Annie for 5 min and then asked why I needed to be referred. I said we were in ABA therapy. He stopped me and asked why. I told him Annie had autism. I also told him we were scheduled for CCHMC potty training class for special needs kids. He said he uses that protocol and to implement it. We have an appointment in January with him and hoping he can help us. We did go to the potty training class and it was intense. I won't even go into that. Just know I have to have my mom watch the other two girls and have Josh home. Yea.

Annie is doing well but there is always that big slap in the face that always gets you.  In the back part of my mind, I always hope Annie will one day wake up and be without it. I always have that hope. While I am blessed that she functions at her current level, she still has a lot of issues that hurt me deeply and is painful to watch. Communication is a huge problem. She has a lot of vocabulary, however, if you ask her what she did today, she will look at you with a blank look. Or if you ask what she wants to be when she grows up, she will  not even process the question, which is hurtful. We sat down as a family and I had the girls make a christmas list and made a christmas tree to put the desired gifts on the tree. She had a meltdown because she could not understand what I wanted her to do and she thought we were ruining her tree. It was supposed to be fun. It was supposed to be filled with christmas cheer and instead a meltdown reminding me my daughter needs help.
The pain of a mother and parent is unlike any other. I have friends that have lost babies. They have lost them at early stages and they have lost them when they were full term. I look into their eyes and I can see some of that pain.  I don't know THAT pain. I don't understand what it is like to totally lose your hopes and your dreams with the child you miscarry, or the child you bury. to not even have the chance. That is hurtful, It is painful, unbearable at times.  I know the pain of not knowing if your child will ever be "ok", or get married, or have children. You come to the realization that your child will probably get made fun of for their quirky behavior. I often look into people's eyes and wonder what kind of pain they harbor. Sometimes the pain is raw, right there behind their eyes and you know they have gone through some real adversity. Other times, you know it is there but it is just too painful to be transparent. Then you have the person that it hurts so bad they have no choice but to show it. Once you have the experience of going through something so painful with your child or someone close, you can almost always spot another person's pain. Some of my friends mourn for the child they will never know. Some of my friends mourn for the children they had for a couple years and then they were taken away too early. It's pain and it is real and will be there forever. That kind of pain changes you. While everyone else goes back to their life after saying " I'm sorry" or " You're so strong, hang in there", you are left with the pieces of finding your "new normal". Take time away from your own life, to see how you can help someone else who is hurting. It goes a long way.
Annie I've said it before. I will not ever give up. YOU and your sisters are my first priority and I will see to it that you are the BEST Annie you can be, autism or not. I can't promise to take away autism, but I will be here when you struggle. I will be cheering you on. I will walk ahead of you, or beside you, or I may need to walk behind you and watch you succeed. Whatever you need, I will be there for you my sweet girl. I will clear the path for you and then teach you how to clear it for yourself. I love you with every single thing I have inside of me and I will always will. Forever, my 3 beautiful daughters.

"The Never Ending Story"

It really never ends, the story that is. At least ours doesn't. It is so constant that I have now pleaded with God to provide me 5-6 extra hours tacked on the end of my night. Which is just sick. From the moment I get up in the morning, til I put the girls to bed, my mind and body is on over drive. I put both Joslyn and Annie on the potty no less than 10 times a day. Then there is always Bella who needs changing. Somewhere in there, I am shoving about 14 supplements into Annie each day. This is between therapists, laundry, cleaning, phone calls to doctors and insurance, paying bills, worrying about work, and all the other responsibilities a normal mother/wife has. Since school has let out, Annie is off her schedule and life is crazy. Its 11:51 pm and I can't stop. Why? Because sleep doesn't come easy for this mama.

Joslyn:

ATTITUDE! I know many of you are shocked. I know, I know. The apple doesn't fall far from the tree. I know. She definitely got my spirit. I know it will serve her well. It has given me the drive to do what I need to do for my family. I'm sure when she reaches 13, I will wanna hide forever. This girl comes up with so many sayings. Josh was giving her a bath and he sternly told her to sit down. She says, 

"YOU'RE GETTING OFF MY NERVES." She is a huge help to me and she reminds me life is good. She's an upbeat, very passionate soul. I can relate to her in almost every way. I love you, my firstborn. Your drive will take you many places, make sure you are proud of those places it takes you. You will one day have a little girl of your own who will ask why you did what you did. Make sure you can tell her with pride. Thank you for being so patient with me. You, my love, will go far. I know it.

Annie:

Oh my little Annie. How I hurt for you my precious. You are struggling so hard, that when I see it, the lump in my throat gets a little bigger. At times, it feels like it is choking the absolute life out of me. You struggle to eat, to play, to relate, to communicate, to walk, to wait, to be healthy, to experience life. And that makes me angry. Not a bitter angry. An anger that lights a fire underneath of me. You have to practice life in therapy sessions. Normal things that come so easily to others, comes as a demon you have to fight to overcome. You are doing a good job baby. You keep fighting. Your mama promises to go before you when I need to, stay beside you when the situation calls for it, and stand behind you to watch you succeed. You will succeed. My darling, you have so many people in your life rooting you on and coming to our house to make sure that happens. You look so peaceful in your sleep. Sometimes I wish I could come to you in a dream while you are not fighting so hard and tell you everything will be ok. And you would understand me. Where you enjoy life without having difficulty to process so many things.  Where you would be in no danger to wander off. These are our dreams baby. We will live them one day. You are so very loved. 

I can't explain what autism takes away. It takes away too much. At times, I feel like this is too high of a price to be paid by a child and their families. It is just too hard with too little help from our nation.  Annie got a whole myriad of tests back that were completely abnormal. It showed many types of bacteria and yeast overgrowth in her gut. It showed heavy metal toxicity in her tissues. It showed a whole host of amino acid, vitamin, and mineral deficiencies, anemia, abnormal cholesterol, and just a whole lotta outta whack stuff. Labs that indicate a mitochondrial disorder which we will never get a definitive diagnosis. It involves a muscle biopsy, which is something we are not willing to do. It takes months to get results and even then you are not assured of an answer. Annie is on Zinc, Iron Picolinate, Selenium, Custom Probiotics, Digest Spectrum, Nystatin (for yeast in gut), MCT oil (mitochondrial support), Amino acid blend, Low Dose Naltrexone,  N-Acetylcysteine, Enahnsa, Cod Liver Oil, Folinic Acid (easier form of folic acid to be used-methylation support), Vit D 3, Hydroxy B12 shots (methylation). She gets these everyday, some 2-3 times a day. I feel like this is all I do. It is literally everything I can do to keep up with giving these. Along with this we have poop issues. Around 70-80% of children who have autism also have GI issues, either severe diarrhea or constipation. The girl can't poop. Which leads to even more immune dysfunction (Yes 80% of your immune system is in your gut!) We are trying different things to treat this. So far, nothing biomedically has helped. After Annie has been on all this stuff for a while, we will do another poop test to see if our interventions worked. If not, we move to something else. We are plugging away and we won't stop.

We are still raising money for a service dog for Annie. For our reasons why, a news clip might explain it better. You can watch it here here. My main reason would be for safety. I cannot tell you how many children who have autism have gotten out of their house, YES, despite safeguards, wandered, and either drowned or died from weather conditions while being lost.  Watch this and it will explain the severe risk our children with autism have. I cannot stress the amount of fear and anxiety I have when thinking of my Annie getting out of my house, or her Mimi's house and finding a neighbors pool or a pond. The consequences are deadly. The stakes are too high. We are planning a fundraiser. If you know any vendors who are willing to donate anything please contact helpannietoday@yahoo.com. Annie's Blog is to help get the word out and to keep people up to date with our journey. It will be a long road, but we know if God wants her to have this service dog, He will make it happen. We've had so many people come forward and help. Its awesome to see the people who care. Its also awesome to see people who have no clue who we are, help beyond measure.  Please know words are not enough and my heart overflows with gratitude. You are helping our baby. How could I ever express my thankfulness?

To my Bella boo,
What a complete joy you are to my very soul. God knew what he was doing when He allowed me to have you. Certain points in the day, when life is so hectic and crazy, and I think I cannot do this, I look at you and you give me the biggest smile you can. Then, life is good. The hurt seems to melt away as I stare at you, oblivious to life's trials and pain. You only know, "I can see mommy and I'm ok." I'm all you need and one day that won't be true. So I'm relishing in the fact that you look at me with complete love and adoration. The feeling returns full circle my baby Bella. I love and adore you. Amidst our crazy world of therapy, supplements, doctors appointments, tears, and laughter, you bring normalcy. I hope, one day you know how much Daddy and I absolutely love you. I fall in love with you more and more every single day. You are my baby. I can't wait to see how your personality develops.

We also made the front page of our community news paper. Here is the web version. Thank you to the Kenton Community Recorder for getting our story out there. We hope to contact other local newspapers and news to get Annie's name heard.

Become Annie's friend on facebook : Annie Havel's facebook page.

If you would like to help Annie get her service dog please contact helpannietoday@yahoo.com.

As always, if you would like to make a donation in Annie's name please follow this link. Scroll down to Annie's section and you can make a donation at a link at the bottom of her section. Please, if going through paypal, add an instruction box and please please please specify that your donation is for "Annie Havel". Otherwise, we run the risk of her not getting your donation. Contact us on FB or through the mentioned email address with any/all questions.

                                                        Compliment of Kenton Community Recorder

And we are up and running

Changes, changes, and more changes. Seems like all for the good. I hesitate to say such things, because I feel like if I say it out loud, it will surely not be allowed and it will be taken away. I don't know where that feeling comes from. Perhaps, from the sheer desire of wanting your children to succeed so bad, you will devote your whole life to see it happen. Or, maybe from a place where you're so tired of thinking what your children might not be able to do, it makes you sick. Maybe from both. Definitely from both. Sometimes I sit here and see Annie interact with Joslyn, playing and laughing together, Josh with Bella over his head, using googly eyes and baby talk and think, " Man, this is it. This is what I dreamed about." Then other times, I'm reminded of my "not so normal" life and so begins the slow fade. Mostly at night, when everyone is asleep, I wonder if God will hear my prayers of begging and pleading; for it is at night, when everything stops. The crying, the potty-training, the diaper changing, the feeding, the laundry, the therapy, the doctor's appointments, the view of your child struggling to live daily life, and your other children suffering because mommy has to follow through on behavior strategies before I can do anything else. Then my mind goes to those that are struggling much more than my own family. Death, disease, despair. There are worse things than autism.
Joslyn is doing fantastic. She wants to be in the spotlight AT ALL TIMES. She loves any and all attention you can give her. If she sees someone else getting her attention, she will remind you she needs to be front and center. She thinks she is boss. We have implemented more picture visuals for Annie with behavioral tactics woven in. If Annie throws something in anger, we get the picture card that has a girl throwing a ball with a big red line through it. We hold it up and say, "what does that say Annie? Thats says no throwing, go pick it up." So of course, Joslyn naturally follows what we do and she wants to implement and reinforce ABA therapy. She holds the picture up to Annies face and says " ANNNNNIIIEEEE What does that say???? That says NOOOOOOO throwing, now go pick it up. " The first time this happened, Josh and I had to turn our heads and laugh because Annie did what she was told. This girl is hilarious and will, no doubt give me much comedic relief and probably grief at some point. She is my helper and is one person that helps me get through the hard days.
Bella boo is always smiling. She is such a happy little baby. I'm scared to death she will regress into autism. I'm watching her like a hawk. I pray everyday, please please please don't take her too. She sleeps 12 hours a night and takes two naps. I am starting some biomedical stuff with her to prevent autism as much as I can. I couldn't ask for a better baby girl. She lights up my soul.

Alot has happened with Annie since the last time I wrote. ABA therapy is in full swing and Annie is responding BEAUTIFULLY. She is not the same little girl she was in 2010. I have a good group of therapists that are committed to seeing Annie have the best life she can have. I had an IEP meeting with Annie's school. It consisted of myself, Josh, Kristina (BCBA - ABA therapist), Ashley (Community Living Supports therapist), Bonnie (behavior supports), Principal, speech therapist, occupational therapist, preschool gen-ed teacher, special ed teacher, school psychologist, and a member of kenton co. central office. Sheesh. For one child. We determined that it would be best for Annie at this time to go in to the structured teaching unit where they would provide visual supports, such as picture schedules and general pictures for communication. They would also apply many ABA therapeutic interventions that are specific to autism. The teacher seemed awesome and talked with me for two hours on the phone about Annie and the plan they would implement for her. I am impressed and so was our ABA therapist. She started this classroom on tuesday and I have seen nothing but improvement. I am so happy because I think Annie was getting very frustrated in the regular preschool class. Thank God for Beechgrove Elementary and members of staff that care.
Annie also saw a neurologist to be worked up for mitochondrial disorder. I'm not sure why I get myself prepared for greatness when it comes to mainstream pediatric care. I leave disappointed every single time and it just affirms my decision as to why we go the biomedical route with our DAN! dr. This neurologist was no help and actually my mom and I kept shooting each other looks like, "Really? He's a doctor?" We left with no more help than we came with.
We have an appointment with our DAN doctor on March 10, and we have ALOT of questions. I hope he's ready. We will find out test results from a myriad of different, very expensive tests that insurance does not cover, of course. Nor does insurance cover this doctor. We will no doubt leave with alot of info and help. We love him.
Annie got her leg braces for her toe-walking and she is doing awesome with them. It really surprised me. She is so defensive with her hands and feet I thought she was going to go crazy on me. We call them her princess shoes and she puts them on with no problem and wears them like a champ. I actually think it provides more sensory input for her, so she doesn't mind. We are working up to wearing them the whole day everyday, an hour at a time.
We have started going to church again. Its been a long while since we felt welcome at a church that would also welcome Annie and her challenges. That is why we havn't gone for such a long time. I called Lakeside Church and they said they would actually provide someone for Annie who is involved with special needs. It has truly been awesome. They take Annie and we do not have to worry. Every church needs to be doing this. If you are not, you are alienating a huge population, and in my opinion, worthless to this type of community who might need a place to go to for support. And in turn, have missed a huge opportunity to reach out to these families. Just sayin.......
We are in the process to get an autism service dog for Annie. This dog is trained in autistic characteristics and is trained to keep the child safe by alerting someone Annie might be, or could be in danger. They are also trained in search and rescue so in the case that Annie found some way to get out of our house (despite safety measures) the dog could start searching for her. A lady from Lakeside, who took care of Annie for us during church, actually had a service dog for her daughter. Thought that alone was crazy that God brought us together like that. Then I get a message today about someone wanting to help us raise funds for Annie's dog and she said her church has an outreach program designed for these sort of things. I asked what church and she said LAKESIDE. I was actually dumbfounded. It has been a long time since I felt God drop something in my lap that was so obvious and in your face. It was one of those moments where I just sat there and I think it confirms that this is the church we need to be attending. I'm still speechless and really thankful and this woman's heart to reach out to strangers. Says alot coming from someone who  knows NOTHING about you and wants NOTHING in return.

I'm excited for what our future holds in all five of our lives as we continue on our journey of healing, hope, and helping others.

Joslyn

Annie

Bella

Regression- A step backwards

I find writing down my thoughts helps me clear my own brain out. Otherwise I feel like I'm being screamed at so forgive me if I ramble. This blog's purpose is two fold: to hopefully one day show my girls what our life was like and show Annie how much she overcame and how loved she is, and also, to keep people who pray for our family updated.

Annie is in a pretty significant regression. Its actually the first time I have seen her regress to the point where I don't know this child. It is like something came in and stole the soul of my child and left me with a shell. I know some of the things I might say might be controversial but it is how I feel and some of this is not pretty. Annie walks around aimlessly for hours and she does what is called "scripting". She quotes phrases from movies, shows, books, or things people have said. She walks around all day and scripts with no language intent. Sure, she is talking but no communication is happening. She doesn't even know what she is saying. I get this all the time, "WOW she is a good talker and she has great language." Great, doesn't help when she has no idea how to use that language. Its as useless as having no language at all. I am grateful she has words. However, it is painful to hear her repeat herself over and over and over with no purpose. I'll tell you what it is like. It feels like an invisible person is with us and everytime Annie "scripts" or spins or severely melts down, its like that invisible person is saying, " SEEEEEE? Don't you see she has autism? AUTISM!!!!! And it will always be there. " I might as well name this invisible "thing" cause its always there, ready to feed on my worst fears. Worst fears such as, she won't ever get married. She'll be bullied cause she's weird. She won't have any friends. She will live a lonely life. She will be treated improperly by care givers because she is vulnerable. What happens when Josh and I die? Will Joslyn take on the responsibility? Will Joslyn be bitter or be protective? Will Annie get worse? Will she get better? Can Annie be recovered? These questions are on the forefront of my brain EVERY single day. Every single hour because autism is here every single minute. I go through life wondering what my daughter would be like without autism. So many of her "characteristics" are autism so at times, it is hard to see who my daughter is. I get glimpses here and there. When she comes up to me and hugs me and says " I love you". I am extremely grateful for these times because its these times that get me through the dark ones. The dark ones are DARK.
Autism is like an emotional rollercoaster. One week is awesome and you think, " YES we are on the way to recovery." The next week, you're in a regression and your hopes and dreams die for your child all over again like they have a thousand times before. You think it is bad enough when YOU as the parent see the regression. But when other people see it, it feels like a punch in the gut or a slap to your face. Like giving an indian burn on top of a sun burn. It makes you whince, and it feels like the core of your soul is shaken. And a piece of you dies. You cry, then you get back up with your sword and shield and fight on. Because you and only you are the ONLY advocate for your child.

Annie's teacher at school called me and said they aren't making any progress with her. They said she keeps regressing to the point where they do not know what to do with her. They want her to be evaluated for the autism classroom at Beechgrove Elementary. This would provide Annie with a lower teacher/student ratio with a teacher who specializes in developmental delays and autism. Talk about a low blow. I got off the phone. Cried. Texted my friend who has a child with some issues and she has been a source of strength for me. She said, " Be brave and get the job done. She's counting on you so only feel bad for a moment and get back on track to get her well." - Gina Tharpe. What good advice. I don't have time to sit here and cry. People in my family who constantly tell me they pray for my family, close friends who offer hugs and words of encouragement, those people and my God are the ones who make it possible for me to pick up my sword and shield and fight on.

This verse keeps on coming back to me : "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 NIV. 


I have to entrust my child to the Great Physician, even though I want to keep her in my grips. He is prying my hand open and I need to let it go to HIM, however hard it is. 


My child is a sweet, loving, tender, compassionate little girl. Autism has my child, and I will get her back.

Our New Life

We definitely have a new life. One that is strange, but I totally asked for it. Many of you know the struggles we face and understand. Many of you do not. This blog is an attempt to keep family and close friends up to date.

Back in June our Annie was diagnosed with Autism. That day I came home and poured though the internet to find how I could get services for my child. I FINALLY have them all in place. Annie has a medical card through medicaid because of her "disability". This helped get Annie under the Michelle P. Waiver which provides an ABA therapist, a staple of autism treatment. The Michelle P. Waiver will also provide a therapy aide that will reinforce the ABA therapy mostly in the evenings and on weekends. Annie still also goes to speech and occupational therapy every week. We also have a program called Impact Plus through the state of KY that allows a therapeutic support aide to come in our house and take Annie out in the community to work on different life skills that she seems to have difficulty with. This also provides a behavioral therapist. Her week is extremely busy. She has preschool for 12 hours a week. ABA 7 hours a week. Behavioral therapy 3 hours a week. Therapeutic support aide for 10 hours a week. Therapy aide for 6-15 hours a week. Speech/Occupational therapy 2 hours week.  She's a busy girl as you can see but this is what I was fighting so hard for. My daughter to have a chance and get intensive therapy at a young age. What a blessing.

I know many of you have prayed and been so faithful and I can't tell you what that means to me. You have called and texted and asked how you could pray for Annie or how you can help us. Those of you that are there and know our daily struggles and pray, thank you. You won't ever know what it means to me.

Annie still struggles on a daily basis. We basically take her day minute to minute and things can change faster than that. We are still doing biomedical treatment with her DAN! doctor which consists of testing and treating high metals in the body, testing/treating bacteria/yeast in the gut, improving immune function, and SO many other things that I cannot begin to name off. Biomedical encompasses a vast amount of information. It is expensive to say the very least. Annie has HUGE meltdowns, making it very difficult, even impossible, to take her out in public. We don't lead a normal life. We don't really go out as a family. She gets sensory overloaded and frustrated VERY easily. She struggles with communication breakdowns and often can't tell us what she needs or wants. She has a hard time with transitions, meaning, going from one activity to another, or going from one place to another. Just going from the car into the house could create a big meltdown that could last 5 min to 2 hours. She still tip toe walks which she will be fitted for leg braces within the next few weeks. One positive thing we have seen is a burst in language. She has increased her vocabulary and affection. She does script alot. Scripting is common in autism. She takes phrases and words she has heard multiple times and says them over and over with no meaning. She also has problems with speech pragmatics. So if I come in after she hasn't seen me in a while, she would say Good Morning Annie, in stead of hi mommy. She knows she supposed to greet you, she just doesn't know how to do it. She has no self-preservation skills. She will run or dart out in the road or just run and never look back. This has begun our thought process on how to keep her safe. I've heard alot about children who wander and often die because of their wandering away from home and to a place of interest to them such as water or the woods,etc. We plan on making modifications to our house to keep all of our children safe.

We have alot to be thankful for. Our therapeutic support aide who comes to house 10 hours a week, Stephanie, is awesome. We love her. Annie and Joslyn think she is the greatest. She plays and helps with both girls even though she doesn't have to with Joslyn. I'm thankful for this. At times, I have alot of guilt over Joslyn. I don't want her to feel left out. So this is huge for Stephanie to include her in Annie's treatment plan. She will never know how much I appreciate this. She is sooooo good with the girls. She is a former social worker and a mother of two. God knew exactly who I needed and sent her to us. What an angel. I feel like I have a great team who care about and fight for Annie. These are answers to yours and my prayers.  We are on our way to recovery.

Joslyn is doing well. She is growing physically and socially by leaps and bounds. She does still have some speech delays and motor planning problems, along with sensory issues but is making progress all the time. She is also in speech and occupational therapy every week. She is my big helper and miss Boss. She enjoys preschool and is totally potty-trained. She makes us laugh with her random sayings and songs she sings. She makes me smile and will be a lifesaver, I'm sure, in the future.

Bella Boo is my baby. She has the biggest smile and is so happy. She cries when she is hungry and tired. God blessed me November 23, 2009 when I found out I was pregnant with her. The doctors told me my HCG was low and that I might miscarry. Then, at 35 weeks, they found out I had obstetric cholestasis (gall bladder slowing) and was increasing my bile acids in my blood. These could cross the placenta and clog it making there be a risk of still birth. It was determined that they would deliver her right at 37 weeks. After 37 weeks the chance of stillbirth increases significantly. I also had gestational diabetes and lungs take more time to develop when the mother has this condition so I was also afraid of her lung immaturity. God spared her any problems and she was born July 15, 2010, a month after Annie was diagnosed. That was a very stressful month between June and July.

Me and Josh continue to love each other and maintain a marriage with respect, honesty, and integrity. I couldn't have hand-picked a better man to walk this life with. He is a caring husband and the greatest father. I can't even begin to say how much I love him and appreciate him for who he is. He's a testament to hard work and living a life of no excuses.

This might be full of details, but I also keep these "blogs" so I can look back and see where we've come from and where we're going. Thanks to all who are interested and to those of you who continually let us know you love us.

Here is Annie singing "O God, you are my God." It is a great thing to hear her singing about God and one day I pray this song will have meaning to all three of my girls.

One more thing, the video below is an excellent description of what our day might be like. So when you are around us and Annie acts a certain way, please have patience and know we are doing our best.

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.

Our life.

I thought I would start blogging. Not in a self-indulgent way, but I know many of you pray for our family while trying to recover Annie from Autism. I thought it would be nice for her Aunts, Uncles, cousins, mimi & paw paw, Nana, and friends to be able to see our hardships and our victories. Our smiles and tears, our blood and sweat. I will be posting so you all can keep up with not only Annie but our family. I know alot of you have put so much into our lives and this is a good way to keep you informed and how you can pray for us. We love you all. Our family thanks each of you for the role you have has in making our lives successful.