Faith

Faith.

Faith is a funny thing. I have had faith in God and an understanding of a greater plan since I was a child. I often have leaned on faith when the world doesn’t make sense or when going difficult times.  Since Lindsey’s diagnosis I have had faith that we would get thru this. I’ve recently given that deeper thought. I believe that faith in God’s ability to provide me with answers was often confused with self confidence in finding a solution.

I know without a doubt that specific people, stories and opportunities were laid in my path by God. (There is no other explanation of having the ability 100% of the time to talk to the right person in the right place at the right time.) But it took meditation on this to stop and realize that I have done nothing, my daughter is recovering and I have simply been a tool for God to use. Lindsey has taught me so much; she has taught everyone she has met something special. But it is only when I step back and look at the big picture that I realize this isn’t about me, it’s not even about Lindsey, it is about God and having faith. This is his plan; he is using us to testify to the goodness of him and the gospel. Knowing that he is the captain of this ship, not me, not her doctor but God, helps us move forward. He knows her story can have an impact, he lead me to share our journey so that others could find faith and hope. For that and for all else all glory should be to God.

So I write this particular message in hopes that this serves as a reminder, on the days that we are overcome with pride and joyfulness and on the days that the tears won’t stop from fear of what tomorrow may bring- the reality is that God has it all under control. That we should remember we are never alone in this we have each other, we have our family, we have friends and strangers that willingly help and we always have God by our side.  

This is my most intimate post and it may not be received well by everyone, it may not be my most eloquently worded message but it is my very best advice.  Thru it all remember you do not carry the weight of this alone, you are not tasked with knowing all the answers or expected to perform miracles- that is what God is for.

-All my love to you and your families-    

Labels open doors

It’s tough having a label on your child; parents want their child to be seen for ALL they are not seen simply as a diagnosis. But that diagnosis, that label is the key that opens doors. When Lindsey was diagnosed I was not shocked, I knew something was “off”, but I was concerned. I was worried about what that meant as a prognosis, how would her development be impacted and what changes we should make to our expectations.  

I found that I became a stronger mom once she was diagnosed, I have always been head strong and this new challenge brought my competitive side out. If Autism was going to try its best to steal my daughter, I was going to fight back- and knowing what I was fighting was the first step.  Knowing and studying Autism allowed us to find a plan of action, but most importantly it allowed us access to the right therapies, schools, IEPs, scholarships, insurance coverage's and more.

These tools, these necessities are accessible and affordable if you go thru the right channels. First – let it help guide an IEP, see what therapies and support you can gain thru your child’s school. This will do 2 things, it will help them developmentally (At school - Speech Therapy, Occupational Therapy, Physical therapy etc.) and it will allow them to have more opportunities to learn inside their classroom. Then move on to your insurance company, contact them and discover what insurance covered therapies are available. With these two pieces in place you are setting the stage to be eligible for scholarships that require public school experience and IEP’s. In the state of Florida the most popular is the McKay Scholarship, once a child with a disability is approved they determine an amount of money that you as a parent can apply to private school, whatever private school you believe will best suit your child’s needs. Several plans like this support the Autism community in helping our children thrive.

With this information and diagnosis it becomes the parents responsibility to research and find the best solutions for that child and for that family. The good news is there are many options and many paths to recovery or paths to help that child become their best. It is often overwhelming, it is often frustrating and emotionally exhausting- BUT it is also the most rewarding experience I have ever encountered. I would do it over and over again if it meant enjoying the victories time and time again. No one will ever say it was easy, but being a parent isn’t supposed to be easy. Being a parent is hard work- children often come first, you support, guide and help them become the people of society you hope they can represent. Our children are our gifts to the world.    

Ultimately the best thing that happened to us- happened when Lindsey was 3 years old. On a day that could be marked for some as the most devastating day of her life, I choose to look at it as the most fantastic opportunity to help her recover. Without that terrible moment of knowing this was real and that a real fight would be imminent, I would not have known how to prepare for it and ultimately we will defeat it.

If you are holding off on getting a formal diagnosis out of fear of a label or concern of what others may think- PLEASE DON’T.

A word of encouragement- small steps

Focus on today’s small steps and before you know it you will be looking at Life’s great success.

It’s hard to explain my persistent optimism especially since I’m a self-proclaimed “worrier”. But thru this process I have consistently focused on doing what I could and being thrilled with whatever progress Lindsey made- especially on the days that were tough. I have even asked friends and family to be frank, to be candid to tell me if they saw the same progress.  I have never thought about 10yrs from now, I do not focus on 10 months from now, I focus only on today. Today is what I have control over and today I can try to help her heal.

 Each improvement, each obstacle overcome, each mark of progress is celebrated- most typically with a conversation with my husband or a phone call to family. Family and close friends have become critical – they are the ones that call and ask, “How is Lindsey doing?” or make mention of how well she has started completing a particular task. Having that support has kept me sane. Having that network to lean on when the day has been tough,  to call while crying because a teacher meeting has gone so wrong or perhaps to call and be joyous because of the smallest step forward with a program has finally come to fruition has been essential to our progress.

I don’t want to mislead anyone, I have spent nights worrying, I’ve spent time on my knees praying and I have spent time crying on my husband’s shoulder. I never want to seem like a super hero that is going thru this process unscathed. This is tough stuff, this is the development and success of my child. But I have found that each day she has made some type of progress. Yes, there are days where she is frustrated and screams a lot or pitches a fit- and as bad as those days are- they are still victories. It wasn’t that long ago that she didn’t care about anything. She didn’t play or want or need- those were the days she was in a fog. At least now she has improved enough to have an opinion or a desire. The small victories really can be found EVERYDAY.

This entire post seems a bit “ramble-y” – but I promise there is a point. Please keep moving forward, don’t let the hard days stop you and don’t overlook the progress that is made- its really easy to worry about the future and what may be. Try your hardest not to worry about tomorrow –today; you may be surprised that the tomorrow you worried about never materialized. Your child is only a child for a short while – ENJOY them. Somehow I found living in the moment to be the secret to our success and I encourage you to try it too!

Points of View- Different isnt bad

Different isn’t bad. I really want us all to remember that. It seems that the further I have immersed myself into this world the more divisive it can be, when really and truly we should simply be each other’s greatest cheerleaders. Having a child with special needs is hard work, those that are intimately familiar with it can provide strength and encouragement unlike anyone else.

What I mean by that is- I have found success for my daughter and initially I wanted to shout it from the roof tops, I wanted to tell every parent I saw and let them in on this secret that could help their child too. I was shocked to learn how dismissive some parents were and I was sad for that child. It took me a long time to wrap my head around why a parent wouldn’t want to know more, why they didn’t want to fight for their child the way I was for Lindsey. Over time I learned or maybe better I realized what was going on. Some of these parents had been so exhausted and had tried things early on that didn’t work so they decided to accept the condition for what it was, to accept the limitations of their child and to accept the lifestyle of constantly caring for a special needs child. The idea of them not doing enough or not trying a particular path they found insulting and I personally believe the guilt would be too great if they ever acknowledged there was more they could do. The most common response I get from those families is “yeah, that’s great, we tried something like that years ago – but my son/daughter is just to severe for it to work”. In my heart of hearts I know all these kids can improve and be their best, maybe not a full recovery but they can have a better quality of life. But they are not my child. These are good parents, they simply are tired and they focus on the small moments of joy rather than the big battles that could cause them to feel let down again. It is important to try to understand their point of view because we have not lived their experience.

There are others that are thirsty for the knowledge of hope and healing and desperate to hear stories of success- so don’t feel like you should keep these moments of conquering obstacles to yourself. Please share your journey with others we will all benefit from it. If you find a family that is content and is dismissive – that’s ok. Believe it or not they still find some inspiration in the message. I have been shocked to learn how many folks we personally know that have ASD in their family or know a child with ASD. Spreading the word of hope is an amazing thing, it really changes lives.

Once families learn about Biomed Solutions (Therapy/ supplements/ diet) they once more become divisive. Just like the Breast or Bottle fed debate when you are pregnant- parents quickly decide what methods are best for them and tend not waiver. There are some that believe in supplements like me and my family, there are some that believe in VERY strict diets without supplements to get those vitamins from homemade smoothies and organic 100% homemade meals with no preservatives, others believe in essential oils and how they impact the body. I think many of us try all three paths and see what works for us or what combo works. My reason in writing this is because as you learn more and understand more you will feel like maybe you are not doing it right or doing enough. Perhaps you will hear someone else’s story and decide that is what you should have done all along. Please don’t be waived by the popular trend of the moment. Trust your gut, all of these things do take time, stay the course that you feel is best and perhaps add to it as you see fit.

Understand that anything you choose to do, will help your child. The best advice I can give is to learn about what choices you make and then stick with them. At some point if you haven’t already you then find a doctor that will help you in this quest. Trust me – finding that doctor will be like the weight of the world is finally lifted off your shoulders. And all of the information that you have learned will be beneficial when working with them from that point forward.

So to sum it up, you are about to be faced with a ton of options, study and find the one that you think fits you, your child and your family- don’t choose to do something that is so hard you can’t stick with it. Then once you find success, SHARE your story, with us, with your community with other families of special needs. Don’t let any “nay-sayers” get you down. Be proud of your accomplishments no matter how small and know that you are the champion your child has been waiting for.      

Teachers and Schools - Some of my most sad and most joyful days

I have always appreciated good, kind and patient teachers. They often devote themselves to their class and while they have incredible pride in their class' success they also have huge challenges that they sometimes face alone. I once thought all "good" teachers were the same. I now know that simply isn't the case, a typical child may have good, great or a bad teacher. A special needs student has an extraordinary, challenged or a bad teacher. Fortunately - I have never run into a "bad" teacher- I know others have, but this post is about the good ones... in all forms.

First week of School for Lindsey

 

Let me explain some of my hardest days- my son went thru a preschool system at a local church that fit him to a tee, he was a "pleaser" and he was advanced in many of his skills. His teachers loved and doted on him and he loved going to school to see his friends and teachers- this was ideal. When Lindsey started at this same school, some of his first teachers were thrilled to welcome Lindsey into their class with expectations that she would be very much like him. Unfortunately, no ones experience was the same. The teachers tried to accommodate her developmental delays but it was no mystery that they were annoyed and bothered by her lack of conformity. She was developmentally delayed, that was the official diagnosis at this point. And while we all knew that - it certainly felt like we were cramming a square peg into a round hole. Ultimately, by the end of the year I had come accustom to the many teacher meetings and leaving them in my car crying. I didn't feel like they loved her or wanted her, the feeling was a complete tiredness of dealing with her. One teacher even uttered the words "I don't want her in my class next year". That's tough to deal with as a parent.

 

So we searched for a new preschool. Her therapy thru Early Steps was changing as she was turning 3. Her services now would be at the local elementary school in an ESE VPK class. It was my option to enroll her full time or selective days. I determined that I would create a learning environment for her by merging a new preschool with the elementary, together she would have 5 days of school and I hoped that would help her catch up. I didn't know what to expect from the ESE class and I was nervous about what other students may be with her. I also had done a great deal of work with the new preschool to prepare them for Lindsey's needs- including an at home visit from the teacher. One week into this program of the 2 school concept I got a call from the preschool. They wanted a meeting. A "meeting" was never a good sign. As it turns out they didn't think she was a "good fit". My heart broke. I would soon learn it was for the best. The ESE class I was so resistant to had an amazing teacher, quite exceptional and she made a habit of telling me the things Lindsey could do- not what she couldn't. She made time to tell me everyday about some accomplishment no matter how small. It wasn't long before Lindsey was enrolled full time with her. This woman had such patience and a way about her. Ultimately- it became quite evident that she loved my daughter, and she loved teaching her new skills. Lindsey was not a nuisance to her and the relationship between them blossomed. The end result was because she fought so hard for Lindsey with us she was able to witness some of her greatest gains.

   

So that is why I say there are extraordinary and challenged - because you see, a good teacher with good intentions often just doesn't know how to help a special needs kid, they become exhausted by it- those are the "challenged" teachers. But those that teach special needs, those that provide therapy to special needs, when you get a teacher familiar with the obstacles and are still willing to fight along side of you and your child- those are the exceptional, extraordinary teachers that give you faith. They encourage you when you feel the doubt creeping in and they commiserate when they see a set back, but they always have your child's back and they don't give up.

 

Please don't waste a second of your time with a "good" teacher that doesn't get it. It will only lead to heartache and tears. Don't for a moment think that there is something wrong with you or your child. Listen to your gut continue to interview schools and go down paths that may make you nervous. The answers are out there, the extraordinary teachers are out there and you and your child deserve to find them.

 

Also- to the teachers reading this: Please understand that I appreciate all of you - I especially appreciate the "challenged" teachers that have great big hearts and just don't know how to handle these kids. In no way do I want any of you to think they didn't do a good enough job for Lindsey or other kids in this boat. You simply have a different skill set, these kids require an entirely different approach to learning. I know that now. I hope that blogs like this are shared with all teachers so that they can direct parents here to learn about better solutions than the "square peg / round hole" dilemma.          

Searching for the perfect and apparently Expensive doctor

As I learned more about this Bio-med Community, I also learned that implementing protocols independently was challenging. I often felt like Lindsey's Mom, therapist, pharmacist, teacher and counselor. I knew everything I did was safe but worried that there was more I could do that would help her get better faster or that I might not know something that needed to be done earlier. So my 18 month search for the right doctor began.

I want to make it clear that we liked and trusted our Pediatrician, she was kind, thoughtful and helpful. After Lindsey had received her diagnosis and I gained some of my new found knowledge on diet and supplements, she was my first stop. I showed her the diagnosis letter and explained that I would like to find a way to get Lindsey B-12 shots. She agreed that the shots could benefit her but she was limited on what she could do as her practice had strict guidelines about only working within the board of pediatrics parameters. She encouraged me to move forward on this path, but she wouldn't be the one to guide us thru it. Her honesty was appreciated and her encouragement was refreshing, but now I needed a new doctor.

I started learning about "DAN" Doctors and "MAPS" Doctors, these are physicians that use biomedical solutions and believe that Autism can improve and in some cases be recovered from by using nothing more than diet, supplements and therapy.

 

Here is a LINK to a list of these doctors,

not all are listed here but it does provide a good starting point

I was encouraged that these doctors existed- but knowing who to trust was difficult. In addition, none of these doctors take health insurance, well none of the most well known. They all charge $400- $500 an hour. This seems extreme, but they are treating an extreme situation and will dedicate themselves to the wellbeing of that child. The first appointment is the most expensive- typically 2 hour evaluation, $400 worth of labs and 1 hour follow up. Yep, we are talking about $2,000. So you see why I researched this for a while before landing on a doctor. We found one that accepted health insurance and our $20 copay and I was thrilled, until I realized that we were not getting results or testing or any of the other stuff I wanted and we needed. So the search continued. I kept reading, studying and learning independently and implementing dietary changes as I went. Everything proved to be beneficial.

Then by chance I saw an online invitation to set appointments Dr. Jerry Kartzinel as he traveled thru Orlando (I would later learn this ad was for 2 years prior and a fluke that I saw it). I called immediately and asked "please tell me you still have spots open in Orlando for October (I was calling in June). The response "yes we can see you in August". Unsure if I had the correct dial in info - I looked and confirmed the number I called was a California number, so I questioned him "but we are in Orlando?". That's when I learned that while they have several locations throughout the US they had just moved the primary office from Irvine California to Orlando Florida. WOW! This was great news- I felt like I had hit the lotto.

 

If you noticed in my earlier posts I mention that the book I found most helpful was a book called "Healing and Preventing Autism" By Jenny McCarthy and Dr. Jerry Kartzinel. This was THE guide I had used for 18 months and it had proven its worth to me in evidence of my daughters improvements. Now I would have a chance for this man to personally evaluate and treat my daughter  first hand! Talk about going full circle.  (This is yet another reason I see God's hand in Lindsey's story) 

 

So that first appointment was filled with excitement, anxiousness and enthusiasm. I also had the feeling of worry - after all I was using his protocol - "how well did I do as a student?". As it turns out, I did ok, I did everything I could do without knowing or having labs and tests run. Now he would be the captain of our ship, he knew what tests to order, he knew how to interpret the info and he had the power to add supplements that required a prescription. I will make mention one of his first prescriptions was B-12, this was my first desire at her onset and this small moment made me feel so confident that she would finally have the support we needed. He also provided insight to the industry, hot topics and what is and isn't accurate on the web and in the media. Moreover, he gave us HOPE, he evaluated Lindsey and told us that he saw no reason that if we continued to work hard and monitor her needs closely that in as few as a couple years she could be caught up with her peers in development and communication. WOW! This was the appointment I had longed for and it catapulted me into wanting to share Lindsey's story. If her story helps someone else, if I could help spread the hope, this is what I need to do. 

 

      

No Gluten No Dairy....No really

So, it was a fateful day that I learned about diet, hope and how they tied together.
 

I will continue to tell you that God put the right people in my path - He and he alone is directly responsible for all of our success and everything we have learned.
 

On this particular day, I was still reeling from learning Lindsey's diagnosis less than 24 hours earlier, and I was conducting interviews to fill a sales spot on my team. The person that I met was over qualified for the position, but like me was chatty and we instantly found many things that were off topic to talk about.

When I mentioned that my daughter had been diagnosed ASD the day earlier, her response was shocking "Oh, my son too". Her son was a teenager and she had learned many truths that helped her son thrive. She went on to explain that Lindsey likely had food allergies that were causing many of her issues- this dumbfounded me. I learned that Gluten and Dairy (Caisen to be more exact) were issues for many kids with Autism and that those foods lead to many of the symptoms.

 

I'm going to be honest- my very first reaction to this was "What? How? What do you eat?" All I could think was no grilled cheese, pizza, hot dogs, cheerios, yogurt, goldfish, Milk..... yikes, her entire diet was no longer available. It definitely took some adjusting to think about what I could buy. I knew it would be hard but I had watched close friends of mine deal with many food allergies with their kids. Those friends provided inspiration that we could be successful in this new diet.   

  

I was definitely intrigued, I promise within hours I was reading a stack of books at Books-A-Million. To my shock I learned this had actually helped these kids. I was ready to go grocery shopping and my newest mission was to create a gluten free/ dairy free home.

Now the truth of the matter is that making her diet GFCF wasn't all together that hard, but our family is not on her diet, changing my habits, my husbands habits and  my sons habits - that was much more challenging. But Lindsey- she was only 3 and would eat whatever I gave her, I had full control and a willing participant. Grocery shopping took longer, planning meals became more difficult, and going to restaurants often meant I needed to prep something for her to snack on or supplement her meal with, but all of this was doable. Society today is VERY accommodating to the gluten free cause and food allergies in general, over the last 2 years the market has become quite expansive in options, heck even cheerios are now made in a Gluten Free variety.

Now this is the "cool" part, within 2 weeks Lindsey started recognizing her name again and responding to single word instructions. She would occasionally have lasting eye contact and I could see progress. And the turning point was when she felt pain. I realize that sounds odd, but I had a three year old that never cried, she could bloody her knees playing and then just get up and keep going without flinching. I had always thought it she was just a tough little girl, but in my massive binge reading helped me learn of the opiate effect. These foods often metabolize into opiates for these kids - leaving them with a much higher pain tolerance. So three weeks into our diet change Lindsey walked across the living room floor and stepped on a toy, when she did she lifted her foot, looked at me and said "hurt me". My daughter was on her way to getting better and those two words proved it. She said these words at a time where she wasn't talking and they made sence, they were a reaction to a cause and effect moment and I knew that we were on the path to her recovery.  

 

 

This is the first GF CF Cookbook we bought,

there are so many but here is a starting point if you want one.