Please read "Welcome to Holland".
Brief Background: Our son (age 2) was non-verbal. Our pediatrician got us connected with Early Childhood Intervention (ECI), and we love our two ECI specialists, Priscilla Weathers and Mary Young. We then confirmed he could hear, and then went to Dr. Daniel Williamson, a developmental pediatrician, for an official diagnosis. If you are a parent in the spectrum, you know how overwhelming getting started can be. One day you have a happy ordinary little kiddo, and in the blink of an eye, you are in big trouble, drowning in fear and worry. So, we immediately started researching. (This is a desperately lonely and overwhelming time. If this is you now, hang in there. Soon, you will have a plan, a good plan, and you can start to breath again.)
I share my favorite websites and blogs on a different page.
My Reading List. Books I have read in Bold with (*):
- Unraveling the Mystery of Autism & Pervasive Developmental Disorder (Karyn Seroussi) *
- The Late Talker (Agin, Geng & Nicholl) *
- Healing the New Childhood Epidemics (Bock & Stauth) *
- Children with Starving Brains (McCandless) *
- Changing the Course of Autism (Jepson, Johnson) *
- The Out-Of-Sync Child Has Fun (Kranowitz) *
- My Baby Can Dance (Gutstein) *
- Intelligence and How to Get It (Nisbett)
- Engaging Autism (Greenspan & Wieder)
- The UltraMind Solution (Hyman)
- Touchpoints (Brazelton)
- Emergence (Temple Grandin)
- A Work in Progress (Leaf & McEachin)
- Movement: Move Into Life (Anat Baniel)
Too many books to read, frankly. You will drown in information. Many books are authored by doctors/parents, and are my favorites.
Interventions We Used
(the short version of each story)
Check out our Moms Guide, for our most effective interventions during the first year.
Early Childhood Intervention (ECI) -Priscilla Weathers helped us greatly the first year. Mary Young helped us as SLP. They were informative in many ways. In Texas, we get ECI services until our child turns 3.
Supplements - Our allergist, Dr. Stephen Miles, led us to our dietician, Dr. Ron Grabowski, who loves to play nutritional detective. He has led us to Spectra-Cell blood testing for nutrients, and has been an essential member of our team. I do try to simplify all the nutritional supplements I give our son (see sample list below). I heartily recommend CoroMega3 for the DHA Omega 3 component. I have bought the little squeeze packets from HEB, VitaCost and Amazon. I prefer the orange flavor.
Special ASD Doctors - Now we are seeing Dr. Kendal Stewart at NeuroSensory Centers. Knowing what I know now, I would go straight to Dr. Stewart for nutritional and anti-viral consulting. I am very thankful that we got connected to him so quickly, while our son was still 2. Listen to his AutismOne radio broadcasts. We have just started his protocols, and I am quite thrilled. I consider him a gifted genius.
We have also seen Dr. Jodie Caldwell and Dr. Sharon Holness-Lucas, both of the Sadler Clinic. They have helped us with special tests and priorities.
ABA School - Our son is in our local ABA school, The Learning Lane, run by Jennifer Crawford and her talented team. The staff is wonderful. Our son has made great progress with them in the years he's been there.
We are now part-time at Early Learning Program (ELP), and love our Peacock class and amazing teachers, Ms. Donna and Ms. Lauren. It is a blended classroom, and is excellent prep for our coming years in Conroe ISD, first at Galatas Elementary, then on to middle school at Mitchell Intermediate.
Occupational Therapy (OT) - We love our OTs! Alma Liotta has gotten wonderful progress in working with our son in sensory, vestibular, balance, and feeding issues. Her knowledge and experience is invaluable to us. She works at Texas Childrens, The Woodlands. We also have a second, home-based OT, Rosemary Slade, who is helping us with auditory transduction therapy and many other sensory integration issues.
Speech Therapy - We have just resumed speech services, and have begun with SLP Britanie at Aspire Pediatrics. Previously, we had speech at Texas Childrens and with ECI. The initial evaluation was done at Texas Children's Hospital and we stayed with them for Speech and Occupational Therapy. Our Speech Language Pathologist (SLP) has advocated Picture Exchange Communication System (PECS). We have done our best to conform to the "rules" of PECS. We also got the Signing Times DVDs (a fabulous series), and sign a little. We use gesture and verbal prompts the most. I went to a SCERTS seminar, and they certainly advocated PECS as a temporary communication tool. I highly recommend the DVDs from Spectrum Connections and the Baby Bumblebee DVD series, also. Our son transitions quite well with verbal prompts and gesture prompts. We never got very far with the signing and PECS.
Neurotransmitters - More important for us than any other factor! Here are some resources:
Food - I am now embracing the GAPS diet, and here is a friend's blog on her GAPS implementation. Once I decided to do this because I couldn's imagine not trying it after reading all Dr. Campbell-McBride's research and explanation. It all makes sense that this could be the missing link that has eluded us for 3 years now with our 24/7 interventions. This is a long-term commitment.
(We were mostly on the Gluten-Free, Casein-Free (GFCF) diet. We also did IgG and IgE food allergy testing. Because of our son's self-limiting food choices, we often drifted off the GFCF diet, and had some IgG food sensitivities.)
Home Environment - As soon as we learned what "stimming" was, we chucked all those toys off to the closet or out the door. We purged the house of the wrong things and brought in people-required everything. Now, we know that every minute is important, and must be spent in purposeful learning. We have changed how music is used in the house, to keep him engaged with us, not lost in the speakers. Our house looks like a Discovery Zone / Sensory Room / kindergarten classroom.
Movement Therapy - More on this soon; gotta finish Anat Daniel's book listed above. Our son has grown to love movement, and we regularly go to
- Wonderwild, and
- Flips Gymnastics. WE LOVE THESE PLACES.
We have recently (3/2012) begun vision therapy at Vision Learning Center and am quite impressed with the interventions they offer. They collaborate with Dr. Kendal Stewart of NeuroSensory Centers.
Oral Motor Control Therapies - Long ago, we did some individualized therapies from Crossroads Therapy Clinic.
FloorTime - We do Greenspan's FloorTime as often as possible, balancing it with ABA Instructional Control and homework from our ABA school.
Instructional Control / RDI - I do this balance with our son, with the advice and tutoring from our ABA school. If I have to home school our son, I want to be ready. Also, I use our home sessions to prepare him for things to come. Like how to play with Lego blocks. On days he doesn't have ABA training, I work with him also. Recent reports show a two-fer benefit with ABA & RDI are used with young learners in the spectrum.
Homeopathy - Husband and I could never agree on homeopathy, so we never really got any traction. I understand their methods and would have used homeopathy.
Aroma Therapy / Essential Oils - A friend of mine is helping me get started with this. I put this in the category of naturapathy - My version of "simple, healthy, natural". Still a work-in-progress.
Sample: Daily Nutritional Supplements (Year 1)
-
Chromium 250 mcg (picolinate)
- B-Complex #3 (Thorne)1 capsule
- Riboflavin 5’ Phosphate (Thorne) 1 cap 36.5mg
- N-Acetyl L-Cysteine1 capsule (500 mg)
- Probiotic(Entrin, combo)1 teaspoon daily
- Enzyme2 capsules
- DHA (CoroMega) 2 pouches
- Vitamin D3 4 drops
- Methylcobalamin/Folinic/P5P shots 12.5 mg/1mg/12.5mg/ML
- NeuroNutrients (NeuroBiologix multi) 2 capsules
- Iodine (BodyBio,as potassium
- iodide) 210 mcg
- Vitamin C (as calcium ascorbate)50 mg
- Vitamin D3 (cholecalciferol)400 IU
- Vitamin K (phytonadione) 250 mcg
- Calcium (as di-calcium malate)375 mg
- Magnesium(as di-magnesium malate) 125 mg
- Manganese( manganese glycinate chelate) 1 mg
- Zinc (as TRAACS zinc glycinate chelate) 7.5 mg
- Copper (TRAACS copper glycinate chelate) 1 mg
Learners in the Spectrum
As a Parent, What I Did
11/2008 to present
Loving Our Interventions (Year 1)
- NeuroSensory Doctor
- ABA School
- OT
- Home Everything
- Playing with Other Kids
- Supplements
- Speech
- Other Doctors
- ECI
Our latest interventions a/o 1/25/12:
Potty Training - Two new books I can recommend if you are like us, still toilet training on #2s:
The Verbal Hehavior Approach A friend told me she loves it. I haven't read it yet,
Nutrition - Nourishing Hope (tons of bio-science on healing the immune system. She gives overview of many healthy diets. I have committed to the GAPS diet, as I mentioned below. It really takes time, but I can't not do it.
Organic coconut oil seems to be the nectar of the gods. Organic Coconut Oil Found an organic, virgin first-cold pressed version at HEB. Using it and butter like crazy for our little guy.
Academic Preparation / Support for Parents Found this resource. It takes some digging, but maybe something there for you.
Auditory Transduction therapy a very good choice for us. So is any form of neuro-typical peer modeling. Flips Gymnastics twice a week, Bouncin Bears, Wonderwild, playgrounds, shopping: it all adds up in a very good way for us.
A number of our parents all want to form an organization to do something for our kids, so OurSpecialCommunity.org is in the planning stages. Come join our non-profit.
