Our Special Needs Journey

We have been blessed with individuals and programs that have helped our son progress in astounding ways. Below, please find highlighted stepping stones from our journey thus far. Please know this information is shared to encourage you and provide food for thought, not medical advice. I am not a medical professional. I am a mom to a child who has struggled since 6 months old. I gladly and openly share our story to provide hope to others. I am in no way compensated for providing links to specific programs. I recommend them because their staff and services changed our lives. You will notice throughout the items, I recommend doTERRA products. These products are safe, natural, and provide Henry the support he needs without altering his personality, his appetite, his sleep, or his emotional well being. DoTERRA has so profoundly impacted our lives that I now provide education on their products to anyone desiring alternatives for their health.


Nutrition

Nourishing Hope Nutrition and Therapeutic Diets

As hard as you try, there will be small things constantly sabotaging your efforts. Many times they come in the form of food. For neurologically atypical kids, foods that are healthy for others are a source of inflammation, which is at the base of all disease processes. This program will help you understand food triggers. She can walk you through an elimination diet to find answers.

Prescription Medication

Henry was prescribed all sorts of medications and even a medical grade food supplement at one time. One of the harsher side effects of the medications was loss of appetite. He began losing weight and eating became a battle, so he was put on an appetite stimulant- which did not work. There were other disruptive side effects that made daily life quite difficult. I am not anti-Western medicine or prescription medication. We tried various medications, dosages, and dosage schedules for years. Our lives got to the point that there was no benefit in continuing with something that was causing all sorts of problems, so we eased off and switched to natural options.

Probiotics

Most people know a probiotic is important, but perhaps not exactly why. Proper gut health is necessary because the gut regulates digestion and metabolism, creates the strength of the immune system, and makes 95% of the body’s serotonin. Then, there is the mind-gut connection. DoTERRA’s probiotics also contain prebiotics, in addition to not having any artificial flavors, dyes, etc. This has become an easy, no-brainer addition to our wellness routine.

Plant-Based Medicine

The first essential oil we tried did not seem to do anything at all except stink up the house. True story. I tried several others before finding a blend that truly did calm his nervous system and allow him to function in a way where his personality was intact, but in a more organized fashion. His sleeping improved and things slowly normalized bit by bit. Our oil routine has changed a bit over the years depending on the situation and need of the moment. However, certified pure, therapeutic grade oils fill the need for emotional and physical health support without the side effects or risk of addictions. They are a homerun for us.

Vitamins

This is the foundation of health. If you only knew how many brands of vitamins I have tried… DoTERRA wins hands down for quality and tangible results. Their chewable vitamins for kids provide everything a growing child needs, and more, without the artificial, toxic ingredients found in other products. They also make a plant and marine based omega oil supplement to go with the chewables.


Therapies

Early Intervention Therapy
Your EI therapist will become your best friend, counselor, social worker, and miracle worker. If you get a good one, hang on for dear life! Your EI therapist is the umbrella under which all therapies will fall, as well as, being the team captain for coordinating therapies. To the untrained eye, you think this person is just coming to play with your child. In reality, all levels of skills are being assessed, challenged, and taught.

Speech Therapy
There are not words to say how I feel about Henry’s speech therapists. Our first therapist identified Henry’s specific condition, a rare one often not seen outside textbooks. She knew exactly what to do and opened the world of speech to him. We used many special techniques highlighted below. Not all speech issues are articulation. For Henry, who never babbled, it was a brain issue. His mouth literally could not form what was in his head because of misfired connections. We owe Henry’s nonstop talking to she and Jesus.

Physical Therapy
Gross motor skills will be addressed with this therapy- think walking, climbing stairs, balancing, jumping, etc. Physical Therapists will also find missing pieces to your puzzle. For example, Henry had collapsed ankles and flat feet that required a specific intervention. Over the course of a year and a half, Henry’s PT saw him progress from not even walking to jumping with both feet, climbing stairs independently, and walking on a low balance beam.

Music Therapy
Did you know it is possible to sing but not be able to speak? Music activates a different part of the brain than speech. With a speech-impaired individual, Music Therapy can help establish new connections to strengthen pre-speech skills. By interacting with various instruments that provide a vibrational feedback to the central nervous system and repetitive and rhythmic chants/songs, a neurological bridge is built between music and speech.

Occupational Therapy
OT is light years beyond providing support for fine motor skills like writing and tying shoes. OT works with balancing proprioception and appropriate sensory integration. These areas affect literally how a person understands their rooting to the earth and how to move through space successfully while surrounded by stimuli. It was an OT who recognized Henry had compressed cranial nerves which were affecting his ability to release primitive reflexes, perform basic oral-motor exercises, and be grounded to the earth to walk evenly.

Brain Balance Centers
This program is outlined in a series of three books, but they also have therapy centers where you can receive private sessions. The premise of the work is based on imbalanced brain development from retained primitive reflexes. This is a movement-based therapy combining gross and fine motor cognitive exercises, along with eye exercises. We followed the program from home because there was not yet a local center.

Brain Integration Therapy
We used this program when homeschooling Henry years ago. The philosophy is similar to Brain Balance regarding an imbalanced brain, but takes it a step further to improve communication between the hemispheres. The simple exercises are reminiscent of Occupational Therapy with its cognitive and sensory integrative goals. The program is well explained and diagrammed for parents to easily facilitate from home. It is a wonderful blend of therapies in a palatable fashion that is not overwhelming.

Discovery Therapy
An education therapy company- NOT TUTORING!- that is a learning development center. They work with children who struggle and adults who have had traumatic brain injuries to establish and improve cognitive function. The therapists in the program will become your concierge of resources. Donna Weston, the Executive Director of the company, and Henry’s therapist opened countless doors for us.


Vision Therapy
True story- an eye doctor told us years ago that it was good we had caught Henry’s farsightedness so early because it could cause big trouble in school. Really???? Turns out, it wasn’t farsightedness. Henry’s central and peripheral vision were not integrated. All the information he was taking in was coming through a tip the size of a straw opening. Vision Therapy identified this and is helping correct it. A portion of the clinic session is spent staring into a machine with various frequencies of light that provide healing to the brain. This is the therapy that Henry jumped a year in reading ability after 10 weeks of sessions. Amazing!


Specialists

Regular Pediatrician
This is where it all starts. In a world of insurance hoops and hurdles, your pediatrician must be your strongest ally and willing to write referrals. If your child is missing milestones or showing any signs of developmental delay, your pediatrician will probably refer you to an early intervention state program. This program runs until the child turns two years old. You will be then go to public schools to receive services if your child qualifies. Take the help! The therapists will become a lifeline for you. Our pediatrician got the ball rolling for us and we are forever grateful!

Developmental Pediatrician
If your child has developmental challenges, you will be referred to this specialist. A developmental pediatrician will identify particular issues and probably have you go through various screenings and tests to better assess the situation. There is usually an incredibly long wait time for your first appointment- think months. Keep the appointment! If medication is even somewhat on the radar for your child, this specialist will have the latest information. If your child is not on Medicaid, be prepared to pay 100% up front at each appointment.

Developmental Specialist
This professional can be a counselor or a medical doctor. In our case, we saw a PhD who specialized in Autism and assessed not just Henry, but our family dynamics. This specialist worked with our entire family so that everyone could be supported. Issues addressed were communication, disciple, boundaries, and expectations. This was our experience. I don’t know if this is typical.

Genetic Testing Center
When you better know what you are dealing with, it makes constructing a plan for success that much easier. Genetic testing can provide answers to the cause of your child’s challenges and provide somewhat of a road map for future development. We have so far been unable to find any genetic anomalies to explain Henry’s challenges.

Fortress Martial Arts

The program of which my children are part is beyond just martial arts. The owners have extensive education in biology, physical training, and special needs. They provide group and private classes. For neurologically atypical kids, karate can be a beneficial activity in helping break retained primitive reflexes and learning self-control. This has been our experience.

Pediatric Neurologist/Cranial Specialist
In our case, we needed to know if there were any skeletal or physiological reasons behind our son’s microcephaly which required a CT scan, MRI, and subsequent follow-ups to check cognitive function and head growth.

Your Child’s Teacher & Teaching Assistants

Make friends fast and share all the insight you can offer. The more your child’s teacher knows about your child, the better he/she can facilitate progress. Stay in touch and stay positive. You are on the same team!


Additional Speech Resources

Besides microcephaly, the only true diagnosis Henry ever received is Childhood Apraxia of Speech. The below resources were introduced to us by our EI therapist and speech therapist. They helped give Henry a means of communication and a path to verbal proficiency.


A Note to Parents:

You must take care of yourself!

You are no use to your child if you cannot function, think clearly, manage your emotions, handle your stress, and receive proper rest.

Remember that it is not an accident that you are your child’s parent. You are the right person for the job. God is with you and will guide you. Remember that your child belonged to God first and God does not abandon His children.

Finally, trust your instincts. No one except Jesus knows your child better than you. The first five years of life are the most critical in terms of development. Do not let anyone tell you not to worry and that waiting will correct an issue. If your antenna is up, pursue it. Take it from me, waiting loses precious time that can never be regained.

TRUST YOUR INSTINCTS!

There are always options to explore.

God bless you. Remember you are not alone. We are still on this journey, too.

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