Peace Of Mind

BY MICHELLE BOUDREAU

I have attended many health conferences over several years and the “Warrior Parents” always stand out. I often wonder how they persevere with amazing strength and courage. They certainly are heroes in my mind. I would like to share with you a wonderful story of encouragement from a “Warrior Mom”, Jessica Coleman, who has a beautiful son, Lennon who is four years old and on the autism spectrum.

When I interviewed Jessica, she recalled when she was at a loss when her son was first diagnosed with autism at 21 months old. She was in a horrible state of depression due to Lennon’s health issues and nothing was working. Jessica had never heard of Generation Rescue (GR), one of the nation’s premiere resources for parents with special needs children, until a friend encouraged Jessica to visit their web site, take advantage of the resources offered and attend one of their conferences. Jessica’s friends remained supportive and encouraged her to hang in there and wait for the Generation Rescue Summit stating, “You will get some answers. I promise, this will help you.”

She first attended the GR conference titled, Autism Education Summit, in 2014. Jessica described the event as, in her words, “Blown away.” She gained a plethora of much needed information. Jessica felt they were speaking directly to her, as physician after physician gave her, as she states, “light bulb after light bulb moments”. She said, “They are describing my child!” She continued with more seminars and gathered more information. She went home that evening to her mother and excitedly said, “I have bought you a ticket. You have to come with me, I need you to hear what the physicians are saying so you can believe this.” Her mother agreed and was also in amazement of the new found information they had both received from the Medical Academy for Pediatric Special Needs (MAPS) physicians.

Generation Rescue is dedicated to providing resources, guidance and support to families affected by ASD. This  includes connecting families with properly trained medical professionals who provide evidence-based, bio-medical treatments in an effort to directly improve the child’s quality of life.

Jenny McCarthy’s son, Evan, was diagnosed with autism. Jenny embarked on an extensive search for answers. When she found the GR website, it quickly became her cornerstone. In 2008, Jenny reached out to GR to thank them for creating an organization that gave voice to her struggles. Remaining aware of how vitally important the organization is to so many families, Jenny offered to help any way she could. Shortly following her proposal, Jenny became  president of GR.

Today, Generation Rescue is known throughout the world for its dedication to the recovery of children with ASD by providing guidance and support for all special needs families.

Jessica reflected the time in 2014 when she attended the first Generation Rescue Education Summit in Dallas. She was waiting in line to meet Jenny McCarthy and when she spoke to her, Jessica said she just broke down in tears as she was overwhelmed with where to start. Jenny encouraged her to submit a grant application, as they offer grants to help parents just like her. In October 2014, Jessica submitted her application, per Jenny’s advice. Shortly after her submission, Jessica was accepted to the Generation Rescue Family Grant Program. She quickly began the program and was connected with her first MAPS physician and Lennon said his first words shortly after in January 2015. To this day Lennon continues to make great strides following biomedical treatments including, but not limited to:
• Two MAPS physician visits/consultations
• Urinary porphyrins test
• Comprehensive stool analysis
• Listening Program- which is amazing and very beneficial to everyone
• Parent mentor that was available anytime to answer questions and checked in our progress and successes weekly.
• Copy of Healing and Preventing Autism and a resource book
• HUGE box of supplements that included:
  º Digestive Enzymes º Multivitamin
  º Omega 3 º Probiotics
  º Methyl B12

Jessica stated, “I do think it is vitally important for physicians, though not only for our autism physicians who truly understand our kids and all of the various medical issues that come along with that diagnosis, complete the MAPS training and remain current on the latest research and treatments. We have been so lucky to have a very well informed staff that conducts research and has guided us to alternative treatments for my son’s gut issues and addressing red flags on lab testing. As a parent, the difference between finding a doctor who has completed the MAPS training, versus a doctor who has not, is that your gut instincts will be blown off. They will not be likely to seek out the root cause of your child’s symptoms and will want to just mask them with medication instead of wanting to help them feel better. We need doctors to think outside of the box with our kids and especially when it comes to dangerous pharmaceuticals, I far prefer a more natural and safe approach to healing than someone shoving a prescription in my hand after a 10-minute office visit. Our doctors take the time to try to solve mysteries… not only to help my child in particular but others as well.

The following is a letter Jessica wrote to GR after her grant round ended last year:

Dear Generation Rescue and Jenny McCarthy,

I want you to know that you saved me. I want you to know that you saved my son. I want you to know that you are saving children and families everywhere. Most importantly I want you to know how forever grateful I will be to all of you for the incredible gift you have given me.

You know my son Lennon, he was diagnosed in November 2013 at the age of 21 months. Lennon was always a fussy baby but hit his milestones seemingly on time. I started to notice that he wasn’t talking like my friends kids were and I just had this nasty gut instinct that he had autism around 15 months. I did everything right, despite his pediatrician telling me there was nothing wrong and I needed to wait and see until he was three to get him evaluated. It was like talking to a stinking brick wall! “He is a boy, they develop slower.” She did agree that he had a speech delay and agreed to send a referral to ECI. I will never forget the day they came to do his evaluation. The
looks they kept giving each other were like daggers in my heart, I knew what that meant, even if I hoped they were going to tell me I was crazy and he was fine. They prepared me that he had so many red flags and to prepare for the autism diagnosis although they could not diagnose him themselves. Within the same week we got started with therapy with Early Intervention, and fortunately for me there is a local group specializing in early Autism  Intervention that was sent by ECI to test Lennon and even offered me Parent home based ABA training. We were truly lucky to get his diagnosis so young and begin our journey shortly thereafter.

Roughly a year goes by and I am sinking further into depression about Lennon. He wasn’t progressing. Sure, he had small gains, but I attributed those to him aging and in small part to the one or two great therapists we had. We had many that were not so great and had many that came and went through the company like a revolving door. I distinctly remember posting to Facebook (my personal diary since his diagnosis) and I was at the end of my rope and it was frayed beyond belief. My post was that of a mom that was feeling like a failure, how I could help my son with the tools I had, it just wasn’t what he needed and that was obvious. I was fortunate enough to already be connected to some biomed mom’s already that promised me the Summit would be just what I needed. You see, up until this point biomed was confusing and scary to me. The moms I know are intense and insanely smart and to talk to them as a newbie was like me talking to Einstein. I had no clue how to get started and really thought there wasn’t a chance in you-know-what that Lennon would go along with the diet. Keep in mind this was the Thursday before the Summit. The next day I attended your Autism Summit alone and I was blown away.

I remember going to my first session and texting my parents so excited and saying “THIS IS IT, THIS IS OUR ANSWER!” Things that hadn’t made sense to me before, just clicked. I met so many wonderful moms that day that just listened to me and encouraged me to try this and not to ever give up hope. I found myself open-mouthed a lot of that day, just shaking my head and being so shocked no doctor of ours had even mentioned any of this to me. I was angry, sad, happy, excited… you name the emotion and I experienced it that day. It was like going to a  meeting of the coolest club in the world, a club I wanted to join so desperately, a club that had hope! My mom came with me the next day and it was funny to see her reactions. I think the word “wow” was used a lot. That Saturday we sat through the Keynote speeches and I remember crying so hard silently I was about to throw up. It wasn’t that anyone’s story in particular was like mine. It was that the battle was the same and with every second that passed, and I knew I was exactly where God wanted me to be.

We waited in line to meet Jenny, Donnie, Ryan and Dawn after because I needed to meet them and thank them for this experience. I had so much I wanted to say to Jenny but when the time came all I could do was stammer out a little about my son and break down crying. I remember the first thing she said to me was, “Have you applied for our grant?,” and of course I had not at that point, so she gave me Candace’s card and told me to get on it! That moment…. right there… changed everything! I met the rest of the panel and took pics with Donnie too. I applied for this grant shortly after the summit and that brings us to today.

Fast forward to January and the beginning of everything. I know you know this already but it bears repeating that a child who had NO language and was all but mute other than fussing and crying and laughing, after 11 days, yells out “Yes, please,” to me begging him for the million-billionth time. I remember it hit me like a ton of bricks and I had to leave to go to sit in my room and cry. HE DID IT, HE TRIED TO TALK, AND THOSE WERE WORDS  COMING OUT OF THAT BEAUTIFUL LITTLE MOUTH… WORDS! Not a sad cry, but a cry of relief, joy, love, pride… whatever you want to call it. That was probably one of the most therapeutic sob-fests I’ve ever had, and it was one of those really ugly cries. I couldn’t believe that I had heard it and was lucky enough to have caught it on video! A few days later I noticed he was pointing to things, what he wanted me to see, what he wanted… what?! He had never pointed before! He was turning around to make sure we saw him when he played, when he found a line  in a show funny, when he had a car he wanted to show us. It was a miracle unfolding in front of us! He was happier, he was engaged, he was imitating, he was trying to be vocal and is this close to talking! Every day I hear him attempting a new word when I request it, not just grunting but actually trying to say them! Every day, do you have any idea how much this means to me, you gave me this!

I share this with you and I have to share about November and December preceding the grant program. It is probably the most important part of how you play into our story. November and December 2014 are what I like to call our own personal hell months. Lennon’s behaviors were so bad and he wouldn’t cooperate with any of his therapists, therapy was a waste of time then and all of his team was urging me to medicate him. I took actual baby beatings daily, and a good majority of his day was spent in his crib, in time out for hitting or kicking or throwing something at me.

His ABA therapist basically helped me set up the appointment with a local Neurologist that specializes in autism in hopes she would agree to put Lennon on Risperdal. After going through pure hell for two months I was almost in  agreement, and having five therapists telling you, that it was a good thing to put your two year old child on anti-psychotic meds was putting more pressure on me than ever before. Sure enough, the Neuro agreed he  wouldn’t get any better without meds, but suggested Abilify to start since I told her I had concerns about some things I read on Risperdal. I had the prescription in my hand on January 2nd and a three-day supply in syringes to get us through the weekend. I knew we were about to start the grant and decided that I would research Abilify and when I did the “sick” feeling I had at the doctor’s office over medicating him turned into a full on panic attack. How could I risk these awful side effects with my son? Had I really given up already before even starting? Was I just wanting the easy way out? As the night went on, I had severe stomach upset and went to discuss things with my mom. I already knew what my answer was, though, and I decided to wait on the Abilify and give the grant 30 days, if things got worse I could always go back to the medicine. 30 days was all I was giving it, ok maybe three weeks (sorry but I have to ‘fess up and admit how I felt)… A single mom can’t live like I was, Lennon was beating me up every day and If I say it was hell again I think my calling it hell will lose all meaning.

After putting those words out there in the universe, I had an immediate calm to my panic and knew that was the right answer for us, for my son, for my family. Needless to say I didn’t need three weeks to make my mind up about medicating my son. I didn’t need 30 days, it took about 15 days and I knew what we were doing was right. It was only the beginning, now is only the beginning. Lennon does NOT need anti-psychotic medication and never did! He just needed me to stop giving him food that was making him high and hurting his stomach! The grant gave me the push I needed to commit to the diet with him. It was just supposed to be a trial, you weren’t supposed to completely change our lives. But you did! Lennon is my precious angel, I would walk through fire for him, and I feel like I did this winter and we emerged like a phoenix!

He is full of joy, and loves to show his love for his family. He is excelling in school and is one of the favorites in class. He is blossoming and I owe so much to you for helping me find him. I could never have done half of what we have accomplished. I all but quit my job to stay home with Lennon to care for him and be his therapist when there are no therapists around. The grant was my only hope to start biomed and see what it could do for us. That little guy is my whole world and I will stop at nothing until he is healed. It all started with you last October. You really have singlehandedly changed my life for the better. I cannot give you enough praise for the work you do. You have given us so much support, education, help and HOPE. As cliché as it sounds, HOPE is the perfect description.  Coming from where I have come from and now seeing so much positive, hope is what I cling so desperately to, it is my lifeline and you cast it out for me like a life vest! I cannot put into words how much I thank you for the Lennon I see today. He is like my little caterpillar that is slowly coming out of his cocoon soon to emerge into the most  beautiful, elegant, sparkling butterfly the world has ever seen. You have sincere friends for life here in Texas!

In Love and in Hope,
Jessica Coleman, Warrior Mom to Lennon

On top of my other advice of not waiting to dive in and learn as much as you can and start treating your child, I did leave out that one of the most important thing: it is to NOT isolate yourself (something I wish I had learned sooner).  Moms especially feel the need to take this head-on and we feel alone. It’s vital that you build a support network. Mom and Dad, grandparents, aunts and uncles. Anyone that your child spends a significant amount of time with needs to understand what you are doing and why! They need to be on board, not just to keep you supported but one person alone cannot accomplish success. You cannot be with your child 24/7 and you need to be able to rest easy knowing another trusted caretaker understands why your child cannot have milk, or a Happy Meal. Set yourself and your child up for success and your stress level can be that much less!

In closing, Jessica shares: “I love sharing our story; it’s important for everyone to know that HUGE progress is possible all you have to do is take that leap of faith! My only regret is I wished I had found MAPS physicians and had gone to the conference sooner!” •

ABOUT THE AUTHOR:
Michelle Boudreau is a national bestselling author who was once considered for a Pulitzer Prize nomination. She is a UCLA alumni, and media journalist, authoring numerous publications. Boudreau has 16 years’ experience as a consumer product specialist, focusing on health product awareness.


To find out more about maps physicians visit: www.medmaps.org or email: Coordinator@MEDMAPS.org


To find out more about generation rescue visit: www.autismeducationsummit.com
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