Speech and Language Resources:



Teach Me To Talk

Lia Kurtin

Pathways Receptive Language

By Cynthia Bernal



Our sweet boy was born on March 31, 2022, at 30 weeks and 1 day. He tried coming at 27 weeks and again at 29 weeks, but thankfully through magnesium and steroids, we were able to make it as far as we could before things just couldn’t be stopped. Benjamin arrived at 4:44 pm weighing in at 3 pounds 6 ounces and a whole 16 inches long! Our labor was traumatizing, to say the least and our sweet boy proved to us just what a fighter he was! Little did we know just how strong he was and would prove to be. The night we were scheduled to room in, he developed late-onset GBS and meningitis and crashed on us, requiring him to be intubated and put on 100% vent support to keep his little but mighty body fighting. He prevailed and came home after a 3-week course of heavy antibiotics. After being home for 3 weeks, he became sick again. I knew based on his cry alone that horrific night that something was wrong and we took him to the emergency department. They initially scoffed at me for bringing him in for “doing the same cry he did when he had GBS the first time.” However, my momma instincts were right and within 10 minutes of being in the ED, he crashed on us and had to be intubated again.

His septic workup showed he developed late-onset GBS a SECOND time, meningitis, septicemia, bacteremia, and cellulitis in his neck. He endured another three weeks of antibiotics, blood transfusions, and IVIG transfusions. We were told to say our prayers because there was nothing else they could do. He had developed pitting edema so bad we couldn’t even pick him up without leaving a handprint on his tiny little head. He had a 650-gram weight gain that first night from the swelling being so bad. Even his belly button was protruding from all the extra fluid in his body. It was horrific. Benjamin had other plans, our prayers prevailed, medication and treatment worked and he pulled through again, something the infectious disease doctor who treated him said was the first time she’d seen a baby survive this infection twice in her four decades of working in infectious disease. 

His sweet spirit and fighting nature helped him grow, despite all odds being against him. He has had close to 200 days in the hospital and had suffered many physical setbacks. He was doing well but not meeting his milestones and we knew we needed more intervention. While waitlists were long to be assigned therapists at that time, we were able to start seeing an occupational therapist with Easter Seals when Benjamin was around 11 months old. At that time, he wasn’t crawling, he hadn’t started rolling over nor was he able to sit up unassisted. We figured out through multiple exams and other hospital stays that he had epilepsy, hypotonia, severe central and obstructive sleep apnea making him vent-dependent via CPAP support when sleeping, tracheomalacia, laryngomalacia, dysphagia, Chronic lung disease, and later genetic testing showed a very rare genetic disorder that added to his diagnosis of WDFY3 related syndrome. His genetic diagnosis came as a surprise and after discussing it with the developmental pediatrician, we learned how rare it is. So far, there are only 73 known cases worldwide. While it may have seemed like the odds were against our sweet boy, we started seeing just how valuable our occupational therapist we were afforded was. Her skill set was incredible and the bond she formed with our boy was that of a family member. We started seeing almost immediate progress. The rolling over started happening, the crawling, then the ability to sit unassisted… we were amazed and so proud of him. We are now working on fine motor skills and becoming more independent in things like dressing himself. The value the occupational therapists we have been blessed with and the skill sets they have brought to the table regarding our son’s care have been amazing! Our current occupational therapist is like Mary Poppins! Every week she has new activities and incredible ideas that keep him engaged, learning, and growing every session. She has been an absolute godsend. 

We slowly added speech and physical therapy to our weekly visits as Benjamin was also having eating difficulties and had been having issues with silent reflux and aspirations. He slowly was able to gain the ability and interest to start solids through our amazing speech therapist and her tireless efforts with our sweet boy! She too became like family to us! He started gaining the ability to drink from a sippy cup, drink with a straw, use a fork and spoon and has been able to start feeding himself unassisted. His language skills are developing rapidly, using sentences and being able to speak for himself most of the time now as a 2 1/2-year-old! His physical therapists who have helped him have effortlessly worked with him on his mobility. Our current therapist not only helped him gain the ability and skill set to become mobile by walking and taking steps but has helped give him the confidence to be able to play with his sisters, do things like start, stop, and change directions, work on changing steps on uneven surfaces, jumping, one leg standing, amongst many other things. He has been thriving with his mobility and continues to grow each day because of her work and the progress she has helped our son make. 

In just the short 19 months our son has been a client of Easter Seals, he has gone from basically just being able to lay on his own to being a mobile toddler, an eating toddler, and a toddler who can finally enjoy life without struggling so much! He’s been blessed to be able to finally thrive on his own with the skills he is learning each week from his therapists and we are so thankful for this. 

Before having our son, I never knew what ECI was or what Easter Seals did. He has opened our eyes to what it means to have a medical child and being a special needs parent now, we have learned just how valuable the therapists are with Easter Seals. And that’s another thing, the therapists don’t just provide therapy. They actually care about the kids they help and truly do everything possible to help them thrive.

We have also been so blessed with our case manager who has guided us from the very start. This whole process was so scary in the beginning but is now like second nature to us, thanks to the support she has provided us and the care and concern she has shown to help ensure our son is thriving to the best of his ability through all the therapies that Easter Seals has to offer. She has not only proven to be an expert in her field but has been an absolute godsend to our family! 

Without Easter Seals and our team of Wendy, Angie, Mira, and Erin, our son would not be the little man he is today doing all he does. We will be eternally thankful for everything they do and who they are as an organization! 

Month-Long

• Breast Cancer
• Bullying Prevention Month
• Breast Cancer Awareness Month
• Dental Hygiene Month
• Depression Education
• Disability Employment
• Diversity
• Domestic Violence
• Down Syndrome
• Dwarfism
• Eczema
• Fire Prevention Month
• Infant Loss and Miscarriage
• Physical Therapy Month
• Raynaud's
• Rett Syndrome
• Selective Mutism
• Spina Bifida

Days

• October 5 - World Day of Bullying Prevention
• October 6 - World Cerebral Palsy
• October 9 - PANDAS / PANS
• October 10 - World Mental Health Day
• October 15 - World Blind Day / World Sight Day
• October 15 - Blind Americans Equality Day
• October 15 - Pregnancy and Infant Loss Remembrance Day
• October 22 - Phelan-McDermid Syndrome - International Day of Awareness
• October 22 - International Stuttering
• October 23 - Kabuki Syndrome
• October 25 - Spina Bifida
• October 25 - Hydrocephalus Day
• October 25 - 31 - International Epidermolysis Bullosa Awareness Week
• October 27 - World Occupational Therapy Day - is a branch of health care that helps people of all ages who have physical, sensory, or cognitive problems.
• October 29 - World Stroke Day