Everyday Struggle, Everyday Success: Extreme Parenting

I often find myself going thru the daily motions of getting the kids up, out the door and to school, then communicating their needs with teachers, therapists and coaches prior to picking them up, shuffling them to activities and having dinner, then its showers, bath time, medicine, brushing teeth and bed time prayers. This is the very same as most parents, we all have busy routines and hectic responsibilities- it’s the smiles and laughter, the memories made that push us forward. I know that my days may consist of a few more conversations or a bit more planning, but that’s life. I don’t ever focus on the added responsibility of caring for a special needs child- until I do.
 

 I recently found myself so frustrated with my husband for asking the most innocent of questions about Lindsey. I had to take a moment and self-diagnose, “why was I so annoyed?” “Why did this question strike a nerve?” After sitting in the quiet of the house once the kids were asleep I realized that being the champion for Lindsey does indeed take a toll. I have to be the expert on her, I keep all of her abilities, her challenges locked in my mind. I am not only the keeper of her secrets but also the solutions. I know her medical history, therapy history, academic abilities, social success’ and friendships.  I am the one that studies new pursuits, new medical interventions and has candid conversations with other parents in an effort to better her world. I am grateful to be her champion, I am thrilled that God trusted me with her development and I am rewarded with her love. But that doesn’t mean that it’s not hard. I am going on pure faith most days that the elements we have added are the best solutions, that the advice we have sought is the wisest and that her trajectory is aimed for success.
 

 While my husband is an amazing pillar of strength to me and gives us his unconditional support in everything Lindsey- I realized that I was annoyed that night because it was a question I simply couldn’t answer. I didn’t keep all the solutions to why Lindsey does what she does or how to correct it. I was annoyed because it was obvious that even after all this time and all the progress there is still more to be done, and mostly because I don’t know where to find all the answers. It’s tough when all you want is to help and you know in your soul that you simply don’t have all the tools you want to have. We all want to guide and protect our children, we want to steer them to leading exceptional lives, but how do you do that when you don’t know why a child suddenly screams or is crying hysterically for no obvious reason, how do you explain to others how to handle a situation when you are blind to why it’s happening. Ultimately, these are moments, they pass and fortunately they happen less and less but they still make you question why as their mother you can’t “fix it”.
 

 This post is an effort to give all parents especially special needs parents’ permission to feel overwhelmed, it’s ok to be frustrated; it’s ok to not yet know all the answers to your child. It is unrealistic to think you will ever hold all of the keys, so appreciate the moment when you do have the insight and enjoy the good moments. Those precious good moments when your child looks at you and without words lets you know that you are a super hero to them. The best part of being a special needs parent is learning to appreciate the little moments, the sweet silent smile when they are victorious at a task or the joy they have when they communicate a desire and you are the only one who “hears” them. Savor each milestone and know that in large part it’s happening because you are supporting them with all your love and ability.     

 

 

 

You must stay vigilant.

You must stay vigilant.

It never ceases to amaze me that as much as I learn there is more to learn and that as much as I have experienced there are still new experiences and most importantly after all the battles there are still new hurtles to champion.

Lindsey started a new school this year, we feel confident that this new school will unlock new opportunities and experiences for her to grow. It wasn’t easy walking away from a loving and supporting environment – but growth comes from pushing yourself forward not standing still. I naively believed that she would integrate with minimal issues, after all she has come so far. I took steps in advance to make introductions over the summer, I wrote a 7 page guide to Lindsey including: random facts, diet, behavior, education, special accommodations and more, I packed a box of food friendly treats that she could tap into if the class was partaking in something she couldn’t have. I spoke at length with teachers trying to be the voice that Lindsey doesn’t always use. Still last week it became clear we needed “a meeting”.

I instantly had flashbacks- I remembered meetings of our past where I left in tears, I remembered meetings that proved her teachers loved her and I remembered that this could be an opportunity to help Lindsey be more successful. So I took a deep breath and strapped on my years of IEP meeting armor and met a team of ladies that all had something to say about Lindsey.

For those of you that have not yet experienced an IEP style meeting- let me paint a picture for you. A school representative is at the table (sometimes the principal), the Therapist (speech, OT, PT, behavior and most of the time all of them at once), the Teacher and someone from the school recording notes. Everyone sits around a large table and if you are doing the math that usually means you are sitting across from 4 to 8 industry professionals that have developed a strategy that they want to present to you. It is easy to feel overwhelmed, it is easy to feel intimidated. But there is one thing you should ALWAYS remember – they do not know your child the way you do and you are the final authority on whatever changes take place.

Don’t let them convince you that they know that childs abilities better than you, they may have strategies but you have years of being their mother or father- you are the one who wakes with them in the middle of the night , you are the one that watches their every move when meeting a new friend or stranger thinking about how far they have come and worrying about what they may do next, you are the one that cares for them when they are sick or scrape their knee, you pray for them, you research for them , you provide for them and you love them. They – the professionals at the table- will never know your baby like you do. I am a big proponent of following your gut, this is the time to do just that. Some of these folks will love your child and will only be looking for ways to help. Others will be trying to convince you that they have issues and lean on you for solutions. It’s all about balance. I often say a prayer before these meetings – I pray that “I hear the words that need to be heard and that I say the words that need to be said”. Often your feelings can be hurt, you don’t know that they care enough and you stop listening- Don’t. It is possible to not stand up for what you know is right in an effort to be polite- Don’t. Take a moment at this meeting and collect yourself. Take the good, the bad and the “in-between stuff” and apply it to helping your child. Be their voice – they need you.

So even me, a veteran at meetings for Lindsey, had to take my own advice. I had to stop my frustration- I had plenty, and listen. I had to hold my tongue a couple times because those words wouldn’t have served us well and think about what words could be productive. Ultimately, I walked away a little tired, a little emotional but very much pleased with achieving a game plan that would help my daughter in her new environment. After all is said and done the result is always worth the meeting. It is your ultimate opportunity to talk to all those that work with your child, know what they are experiencing and for everyone to have a clear path to success.

 

New schools can be tough, new teachers can be tough and I imagine for many of you simply a new school year can be tough. No matter how much we prepare we are still going to have new adventures, new obstacles and new victories. Surround yourself with those that support you, allow yourself to take a break from life every now and again – simply enjoy your family when you can and know that you can make a difference in your child’s life, they can be their very best with you by their side and with God leading the way.         

Oh yeah… I have another child too! (the balancing act)

Oh yeah… I have another child too!

I have often said that Jackson was meant to be Lindsey’s big brother, as each day passes I believe this more and more. I am the proud recipient of complements by strangers and friends alike of kindness, big heartedness, and thoughtfulness displayed by this special boy. He proves to be a true gift from God, not only to her but to me and his dad as well. Jackson has taught us what pure love is. We are constantly surprised by the maturity that can be displayed in everyday actions by an 8yr old. Don’t get me wrong, he is also mischievous and silly, inquisitive and exhausting and quite talkative- BUT it pales in comparison to his ability to care for his little sister.

So as you can imagine he is a great deal of help both around the house and when we are out and about. He also knows life isn’t “fair” there is plenty he can do that she cannot, and he is aware that there are times she is allowed or even rewarded for things that he is not. This is where being a good parent gets tricky! Keep in mind I have two children, Jackson and Lindsey- and no handbook. These two kids are so different; they have different personalities, interests and abilities. They hit milestones at different times, they learn different and react different to rewards and punishment. So my constant challenge is to raise them based on who they are, what they understand and what their abilities are in a way that creates harmony and joy. (Challenge may have been an understatement.)

I find myself researching things for Lindsey, devoting myself to her ever-changing needs and me becoming the subject matter expert of the hour, day or week that a new issue appears. I know that I don’t spend equal time thinking about my kids and that’s tough. In a perfect world I would be able to balance them perfectly, unfortunately the reality is that I have guilt over this and spend many late night hours trying to figure out how to be a better mom tomorrow. I go to bed worried that I didn’t pay enough attention to the 225^th story about a cartoon Jackson watched or why a video game guy was “soo cool” because I was busy asking (begging) Lindsey to repeat something so that I could have that glimpse into her world. Or on the really bad nights I worry because I needed them both to go play in another room so I could keep reading the most recent article on helping Lindsey recover and I missed all the stories and comments of the night. Nights are filled with me challenging myself to be better and thanking God for the day I had, always asking for just one more.

When mornings come we jump into routine and I try my best to be a part of the moment, I try to appreciate the sound of Jackson’s age 8 voice and the mysteries the world holds for him with his inquisitiveness. I try to tune out everything else and focus on Lindsey, her world and her gains on how well she is communicating. I often get caught back in the trap of the “real world”, chores, errands, work, dinner and everything else and find those precious moments slip away.

The big picture is that I have two pretty fantastic kids and although I keep trying to raise the bar on myself, when I reflect on their growth, their kindness to each other, their ability to push themselves to be better- I realize that they are just fine. I will likely always challenge myself to do better, if I expect it from them – they should expect it from me. My goal in the end is no different than any other mother or parent, to cherish my children for the time that they are mine. They will grow up, they will have lives of their own and if I have done my part they will raise children by day and challenge themselves at night.

If you worry that you give too much attention to one, not enough to another or that your time isn’t evenly split- let me give you permission to give yourself a break. If you are worrying that means you are pretty great to start with. It’s hard being a parent, it is tough being a special needs parent (being the champion you child relies on), it is really hard being an engaged present parent especially to multiple children and it is impossible to be the perfect parent. So be you! Be the mom that your kids adore and try your best to be a part of these quickly passing moments.

 

#hopeforautism #autismmom

 

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.

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

The choice to go public

Are we really going to post our family story for the whole world to read about?

Yikes, it is hard to say where that motivation comes from, we are a quite private family, I have a Facebook page that is limited strictly to friends and family that I actually know and my husband has never partaken in social media, so going public is a big deal. I suppose its all in an effort to "pay it forward" we have had so many great families step up and share their story and without them we may not have found our path. It is amazing how many families I have met that were told the same disheartening prognosis. It is unfortunate that a doctor can't be honest, realistic and encourage hope for that child to improve. Not every child will have a full recovery, most will continue to have some A Typical issues but the improvements can be life changing for that child and for that family. Now its time for other parents to know HOPE.

 

This decision is not entered into lightly and I genuinely believe that

Lindsey can help others simply by us sharing her story. 

First Things First - There is HOPE

I am a mom. I have a husband, 2 kids and 2 dogs - we are just your ordinary American family. Our daughter happens to be Autistic, and she has taught us so much. This page is dedicated to all the families who are learning how to help their kids be their best.

"If you have ever met one child with Autism you have only met one child with Autism"  - Unknown

Each child has unique abilities and limitations, what helps one child improve may not help another and the belief of the reasons on why they become autistic vary greatly. The constant and the message here is that no matter the situation we have seen and experienced first hand that HOPE exists and that every child can improve.

Our story is a beautiful, kind, funny and spontaneous little girl named Lindsey. We were cruising along in life with a healthy, happy, and smart 2 year old son and the birth of our daughter- life was perfect. She was developing and hitting milestones- until she wasn't. Around 18 months she started regressing, the few words she said started fading and very little language if any was used. She drifted into a fog and was distant, she wouldn't acknowledge her name or simple requests of "stop" or "no". It was obvious that something was going on. We had her tested at age 2, the diagnosis - Global Developmental Delay. The expectation was that Occupational Therapy and Speech Therapy would get her back on track. Unfortunately, at age three after little to no gain she was officially diagnosed as Autism Spectrum Disorder, Receptive and Expressive Language Disorder, Attention Deficit Hyperactivity Disorder and Hypotonia.

Hearing those words, those labels - it was tough, but the hardest part of our appointment was hearing this doctor tell us "Love her for who she is, she will not have friends, she will not be able to play sports with teammates, she will not be able to communicate, she will not progress past the age of 6 intelligence." Those words were devastating. No parent wants to think that their 3 year old child has a hopeless bleak future.

I am here to say stay strong. We stayed strong, we did not accept this as her future and I immediately threw myself into reading and learning as much as possible about this condition that was stealing my daughter.

I met other moms, moms that were placed directly in my path by God. There is no other way to explain the wealth of information that others provided, the honesty that these moms expressed, the battles they encountered and the hope they provided for me with the stories of success they had found for their child. I knew they were on to something and at whatever cost or time or hardship we too would fight for Lindsey to have her own success story.

It has not been easy. There is a great deal of information and determining what is trustworthy and what isn't is hard. The medical details and explanations of how to correct the issues are confusing and often left me wondering if I needed a masters degree to understand all the language and terminology. But we kept moving forward, we learned that her diet could be altered and could be causing a great deal of her issues. I remember thinking "if I change what groceries I buy, I could hear my daughter talk to me?" DONE. I immediately that day changed her diet. Within 2 weeks she started making eye contact and recognizing her name again. That was all I needed to learn more, try more and do more. My husband often told me that she was "my little peetree dish" and she certainly was. Nothing I did was harmful, it was all in an effort to make her diet more clean and healthy. We saw results with each new endeavor. When you hear your non-verbal daughter tell you "love you" it gives you all the motivation you need to keep moving forward.

The point of this post is simple, 2 years after her diagnosis - her ADHD and Receptive and Expressive language disorder are fading fast, she is no longer suffering of Hypotonia. She is still on the spectrum but making huge gains regularly and her vocabulary has exploded. She tells me at night what she wants to wear the next day to school, what little boy she likes and what she looks forward to doing the next day. She does have friends, she does play soccer and she loves life. She isn't in a fog anymore.   

Stay tuned Lindsey has just gotten started!


#Autism #AutismSpeaks #Specialneeds #nolimits #HopeforAutism