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.

Books.... so many books

I have never considered myself a "reader", as a matter of fact I made a habit of saying "if the book is any good, they will make a movie and I will watch it then." That being said everything changes when your family needs you. My daughter needed me to become a "reader" she needed me to learn as much as possible so that I could start her on her journey to recovery. So I found myself at Books-a-Million, Barnes and Noble, Discount Stores, used book stores and many other places that I would have typically driven past. I also found my self in a web of online articles and opinions. To say that I was overwhelmed by information would most certainly be an understatement.

 

I constantly found myself with a book in one hand and either my computer or phone in the other being used to look up the definition or terminology of a subject. I was fascinated by the amount of information and how common sense solutions seemed to play such a large role. There are many good books and I suggest you find the one that works for you. Ultimately- my book of choice was "Healing and Preventing Autism by Dr. Jerry Kartzinel and Jenny McCarthy. I used it as my "go-to" guide and have shared it with so many. It was easy to read, easy to understand and easy to implement. Please understand that just because I believe in this book, the methods and ideology that doesn't mean you need to, I imagine we all have a slightly different perspective on causes and recovery.

Where do I start if something seems "off"?

It's funny how God works- me, my family and friends agreed that Lindsey was "delayed" but it was thru a friend (not an industry professional) who's child had developmental issues that I learned about Early Steps. We had asked our pediatrician (who we trusted) time and time again to let us know if she thought there were issues but she always explained that all kids develop at different paces and that Lindsey was still in the normal range. So, I was fortunate that my friend was willing to share her experience and where she had found a true starting point. It was a program called Early Steps in Central Florida and they assessed your child and if they determined that they had a need they would, for lack of a better word prescribe 30 min or an hour of therapy once or multiple times a week for that designated issue. This is a state provided program, there is no cost and the best news is that the therapy is also done at no cost thru approved providers thru this program. In our case we had 30 min a week for speech therapy and an hour a week on occupational therapy. The therapists came to our house for the sessions and were a welcome source of insight on ways to help her improve. Lindsey's official diagnosis was "Globally Delayed".

 

Please listen to your gut, helping children with developmental delays early on has been proven to be essential in the amount of recovery they can obtain. It is tough to think that your child isn't stereotypically perfect but set the appointment, best case scenario- you learn you were worried for nothing and worse case scenario you learn how to help you child. It really is a win-win! Here in Florida the program is Early Steps: www.floridahealth.gov/AlternateSites/CMS-Kids/families/early_steps/early_steps.html  

 

It is my understanding that every state has a program in place, if you cant find it perhaps try contacting ours here in Florida and asking where you should look in your state.

 

One of the best decisions of my life was to meet these folks, they were helpful, kind and professional. Neither them or I knew what the future would hold but they eased me into a new reality and world that has been essential to Lindsey's success. They were our first step in helping her improve. I only wish I remembered the names of the ladies that helped us so that I could thank them myself.  

Get to know our Journey

We have come far - we still have further to go.

Let this child encourage you to keep fighting for all the other kids

that need our help, patience and understanding.

These kids are amazing, unique and triumphant.  

Lindsey's Video
#Autism #AutismSpeaks #Specialneeds #nolimits #HopeforAutism