Martin Family Testimonial
Jake was a beautiful baby, unusually so, who had a rough birth, low initial apgars and trouble breastfeeding. He was our first child so it took us a little while to notice that he was not developing typically. The well nurses didn’t notice either but berated us for our healthy lifestyle as our child was not gaining weight fast enough. Once there was even a guarded threat that if he didn’t start gaining weight more quickly, child services would be looking into us.
So we felt very alone as we tried to figure out what was going on. For the first year of Jake’s life we frequently felt alarmed as we noticed non-typical behaviors and responses, but they were subtle, and as he was such a smiley, happy and alert child, we were told not to worry.
Then we noticed that our child wasn’t learning properly. He was late with walking and talking. He never crawled. We had done the alternative method of potty training from birth so he skipped crawling and instead bounced around on his bottom. I noticed that he never signed back to us, communication being a part of the early potty training method. He was late to walk and talk and even then, he would come up with a word, say it exclusively and constantly for a few weeks and then forget it. When we taught him things like how to clap, we had to practice it for a while every day before he would try to imitate it, then if we didn’t practice it daily, he would forget that too. His adorable little body seemed oddly stiff, he didn’t cuddle in like most babies did and while he would sit there and smile, he seemed lost in his own dream world and did not respond to much around him.
After rounds of specialists, three days after the birth of our second child, when Jake was 19 months old, we were given the diagnosis of Potocki-Lupski Syndrome, a genetic disorder, a replication of a tricky part of chromosome 17. The pediatrician gave us some pages photocopied from a sterile medical textbook listing the myriad of things that our child was never supposed to do and all the difficulties that he would face throughout life. We were floored and devastated. I leapt into research but everything I found on his diagnosis upset me more and I spent the first few months of our second child’s life crying. I remember asking another pediatrician about what Jake could be expected to achieve in his life and he told me proudly about a similar child who had made his first independent phone call with some limited language by the age of 18. While I understand now how incredible these milestones are for families of children with special needs, however as a new parent at the time, I did not find that information comforting. I asked another doctor what “developmentally delayed” meant, hoping that it meant he would just catch up later. She gently told me that it was a polite term for “mentally retarded”. Indeed as my darling baby could not even master or remember “clap”, how on earth was he going to build higher order skills to handle life?
Fortunately we have always been alternative minded and I managed to shake myself away from depressing mainstream research. I turned to Down’s Syndrome as a more commonly known genetic disorder, figuring that some clever parent there had found some breakthroughs for their child. And indeed I was right! After scouring FB pages and parent groups, I found in the Down’s Syndrome world that amazing things were happening for children who had either one or both of two things: biomedical intervention and neurodevelopmental therapy. So we decided to launch into both. It took a few years to get going with the biomedical, but with NACD we were able to start immediately. Out of all the neurodevelopmental organizations I liked NACD the most as they had a program that cut to the chase with the most time effective and modern methods, and they also offered ongoing parent support and coaching which as a floundering and disorganized parent, I knew I would need.
At the time we stared, I remember Jake had a lot of unusual behaviors, every time he saw the ocean he would freeze and stare it and refuse to move on. As we lived in a small island community glimpses of the ocean were frequent. He’d open and close cupboard doors, arrange things in straight lines and never wanted to interact with other kids. He had very limited speech, and all sorts of motor skills problems. He could not even pedal a tricycle.
I can’t remember much about that time now quite honestly. I was frequently sick and exhausted from having 2 children close together and with an undiagnosed autoimmune condition in the background. My husband and I did program as best as we could though and I remember starting to feel hope. Jake’s mind started to unlock, he started to be able to learn and we discovered he had a few superpowers, an amazing ability understand and order numbers, remember items on sight and he could even say his alphabet backwards. For a child diagnosed with a severe short term memory problem, this felt like sunshine from the heavens. NACD kept guiding us with program and as a family we were feeling more and more normal every day. We started a biomedical approach with specially developed Nutrivene vitamin supplements around the age of 4 and then everything really came together, Jake seemed to “wake up” to a new level of awareness, his speech and motor skills took off and we were so happy. Our second child, typically developing was put on program too and he was well ahead with all his milestones.
While I don’t remember too many details of that time now, suffice to say we went from despair, hopelessness and rounds of specialists who used lots of big words but actually did nothing to actually help, to feeling like a happy, hopeful and normal family. We no longer felt like a “special needs” family. Program was very hard in those first years, but we were getting results and our lives back! It was wonderful to finally feel like a “normal” family.
We moved overseas then and stopped our NACD program for many years, happy to just live a normal life. Jake still had challenges, but he doing so much better. He started school with an aide but his superpowers really helped him through, from a child who couldn’t remember how to clap he now had the most astonishing memory! He had a phenomenal ability with geography, and started winning the school’s geography contests from first grade. He beat all the high school kids and even the school superintendent when he stepped in as a special guest. He knew every country, capital, flag, location, shape, and once he mastered that he turned to history and somehow developed an incredible grasp of historical details on top of that too!
We started formal homeschooling formally around third grade when the covid lockdowns started and muddled through that for a few years. When Jake hit puberty it became apparent to his father and I that he needed further help. He was still having a lot of trouble with reading, he’d been recently diagnosed with an eye tracking problem but the mainstream offered us nothing except devices to learn to live with it. We had tried everything but gotten nowhere. He still had struggles with social skills and motor skills, and while his speech was reasonably good, it was still hard for him.
As the worry started rising again, we turned to the place where we’d found hope before, the NACD! And in just 7 months back the results have already been incredible! Jake started in November at an auditory processing of 4-5 and in 7 months is has now just touched on a 7! His maturity and awareness has developed in leaps and bounds with it. His eye tracking is improving and reading is getting easier for him every day. He can swim now, and his social skills are improving. He has developed a love for math as the NACD teaches it, and will joyfully tackle page after page of his math text book just for fun. Before NACD he struggled with basic concepts. He is taking off and once again we couldn’t be happier. My only regret is we didn’t get back to it sooner, but fortunately NACD is helping us to catch up and overcome for that lapse quickly!
I should mention my second son, DJ too. While typically developing he did program for a year or two when he was barely a toddler, and he has continued to go from strength to strength. When he started school the testing they gave him said that he was in the top 1% and was considered gifted and talented. When he was 9, he started getting impatient with all the attention Jake got for his his impressive history and geography knowledge and told me he wanted a superpower too. After watching Beethoven’s Moonlight Sonata on you tube he decided that it was a pretty nice song, and he wanted to play it. He slowed down the finger movements from a You Tube video and copied them. Within just a few months he was playing piano surprisingly fluently. A music teacher at a summer camp a few months after he started hailed me down one day with wide eyes asking me if I knew that DJ was unusually talented. He is now 12 and works in our community playing piano at events. He is well paid and makes great tips too!
Everything that DJ does he does so easily and at a high standard. Around the age of 10 he the took up the Rubik’s cube, mastered it in record time and at high speed. It didn’t take him long to get to world competition speeds on nearly of the all the cubes, but then he lost interest and moved on. He is very entrepreneurial, and through primary school would frequently came up with new games or projects which fascinated and created a following amongst other kids.
Previously homeschooling DJ in math was not working and he had seemed to be going backwards so I put him back in school for math. He was doing reasonably well, but after starting NACD for just a few months his teacher contacted me in amazement asking what we were doing as in the MAPS testing DJ had suddenly jumped from a 6th grade level to an 11th grade level almost overnight! Here’s the message I got from his teacher: “Hey Melissa, just wanted to share some great growth from DJ on our winter math Maps test! He improved his score by +18 points from his fall score! (+3-5 is a significant amount for a year so this is pretty impressive!). Went from a 6th grade average to testing at the 11th grade average! Very proud of him and the hard work he has put in.” A jump of 18 points in a season when 3-5 is a significant amount for a year? Wow. The only thing we had done differently was to start NACD again and get to work on his processing!
Would DJ be doing so well without the early intervention of NACD in making sure his development was all so perfectly addressed? I guess we will never know but as a mom I am sure NACD had a lot to do with it!
NACD are truly miracle makers. Sara, our evaluator has laser vision and doesn’t miss a thing. Our program is perfectly tailored to both children, exactly what they need. The parental support and coaching is beyond invaluable. Any behavioral, teen attitude issue is quickly nipped in the bud, and we have a smooth running household now where my boys help out, are well behaved, and are developing into responsible, helpful young adults with initiative. Amy is a coaching wonder woman, and has helped me tremendously to get my act together. NACD offers a whole family, whole life perspective that gives you the perfectly tailored program to your child and life, with the support you need to put it into action, while missing nothing. Chores, responsibilities, and the child’s personal growth and happiness are all a part of it. And guess what? The kids love it. They think homeschooling is fun. Working on processing is central, and we celebrate every step up. Processing parties are the new fun thing in our family!
Our life can truly be measured in BEFORE and AFTER NACD. All the behind the scenes staff are incredible too, and I can honestly say that I feel like they are family, a group who has always been there for us, giving us the answers and support we need to live our best lives. We are living our dream in remote Alaska, a wild and different life, unconstrained from needing to be in city centers, near specialists and therapists. Life is happy, hopeful and wonderful and I will be forever grateful.