What can I do before seeing a MAPS doctor?
What can I do before seeing a MAPS doctor? A lot.
Ideally, you’d be able to get right in to see a Medical Academy of Special needs (MAPS) doctor shortly after receiving an ASD diagnosis for your child but between costs, waiting lists, inability to travel, especially outside the USA, and the learning curve to even know they exist, it can take months or years to get to see a MAPS (MAPS replaces the group formerly known as DAN ) doctor to assess and treat your child functionally and heal their bodies. Whether your child was recently diagnosed or you are just new to TACA and MAPS doctors, below are some things you can do while you wait, in no particular order.
- Before you start, learn who SHOULD pay for what, so you don’t go broke!
- If your child was just diagnosed, start here.
- Get therapy assessments, and if needed, start therapies.
- Read about the traditional therapy options. Use your insurance to go see a behaviorist, speech therapist, occupational therapist and physical therapist. Also consider a developmental optometrist evaluation.
- Implement an intensive 1:1 program.
- Call local ABA (Applied Behavioral Analysis) and/or Floortime providers and get on their waiting list. If your child is under the age of three, contact Early Intervention.
- How to start a 1:1 ABA therapy program
- Get Organized.
- Gather and scan your child’s medical and school records to your computer for easy searching later. If you haven’t gathered them from practitioners yet, do it now before they destroy your records. Read more here.
- Get involved and get support.
- TACA has chapters across the USA, Facebook group for families to support each other and trained Parent Mentors to help guide you.
- Read, Read, Read.
- Suggested Reading: TACA's Recommended Book List
- TACA's Autism Journey Guide - We have versions for Birth through Age 10, Ages 10 and up and Spanish.
- TACA's Autism Journey Blueprints are a visual guide to your autism journey
- Keep journals.
- We all THINK we will remember how our kids do on a supplement or a food, but once you have done a few, they all run into one another and you won't remember every detail, and those details will help your doctor guide treatments, so keep journals for everything you do. TACA has many free templates for journaling and record keeping.
- Prepare for an emergency.
- No one ever plans for an emergency but you can! Having all the information you will need in one place will save you time and panic if you ever need it. Anyone can have a crisis, so a little preparation can go a long way.
- Learn your legal rights!
- Your child will spend up to 19 years in school so learning your (and your child’s) rights will be very useful and save you a lot of time and money.
- Read Getting Ready for Advocacy
- Read these Back To School articles
- Sleep on it!
- Help your child obtain 8-10 hours a sleep each night.
- Watch online presentations and webinars.
- There are free online webinars and conference footage that you can view to learn and stay up to date with services and treatments. We recommend you catch as many as you can.
- TACA Webinars, ARI Webinars
- Conference Videos from ARI and interviews from FAIR
- Keep Your Kids Engaged
- One of the common issues with autism is that our kids prefer to be alone and fester in their OCD and self-stimulatory behaviors. While giving them breaks is great, too much time alone can be a bad thing so learn some things to keep them engaged.
- Apply for a free 1:1 Parent Mentor
- Getting connected with a trained TACA Mentor parent can save you loads of time and mental energy by guiding you through the processes and services your child will need. Get one ASAP!
- Get training for yourself
- No one sets out to have a child with special needs, especially behavioral needs and what you know about parenting may not apply to your child with autism so getting some training on parenting for autism can help a lot.
These suggestions are strategies that encourage balanced nutrition, remove additional toxin exposure and help the body regain and stay healthy.
Recent research demonstrates many children with autism also have treatable medical issues. Once medical issues are tested and treated, children with autism act and feel better.
- Encourage proper sulphation and help relaxation before bedtime.
- Start nightly Epsom salt baths. Soak 20+ minutes in warm water up to their belly button with 1-2 cups of epsom salts.
- Start the gluten-free, casein-free, soy-free (GFCFSF) diet.
- Dietary Intervention is the centerpiece of all treatment so start with the basic GFCFSF diet first.
- Learn about dietary intervention
- Start dietary intervention
- Consider Digestive Enzymes and fermented foods
- Dietary Intervention is the centerpiece of all treatment so start with the basic GFCFSF diet first.
- Start pulling out toxins from personal care products, kitchen, and household items.
- Start replacing plastic with glass containers
- Test your water quality and buy filters, if needed
- Start replacing anything non-stick with cast iron or stainless steel
- Start replacing shampoo, soap, toothpaste, deodorants with non-toxic versions
- Start replacing laundry and dishwashing supplies with non-toxic versions
- EWG's SkinDeep Database is the best on the web!
- Start buying organic food.
- Remove additives, preservatives, and dyes from foods.
- Learn which produce you should always buy organic and which you can get away with not buying organic at http://www.ewg.org/foodnews/summary.php
- It is all about how your body takes out the trash: POOP.
- Learn how to deal with the constipation or diarrhea
- Learn what symptoms your child exhibits mean.
- Read up to learn what it means when your child does THAT!
- Allergy trials.
- Before you can get formal IgG and IgE blood testing, you can run food allergy trials with these free templates
- Treat yeast overgrowth.
- Learn what yeast is, what it looks like physically and medically, and how to combat it.
- Supplements and Vitamins.
- Consider starting basic supplements like calcium, magnesium, Essential Fatty Acids (CLO, EPA, DHA, flaxseed), probiotics and a multivitamin. Important notes:
- As parents, we’re not allowed to prescribe, or even tell you what dosages or supplements you should give your child. We can however share our experiences and knowledge with you based on our own experiences.
- ASU's Dr. James Adams' Summary Treatment for Autism contains dosage guidelines
- Kirkman’s What Supplements help what symptom” roadmap
- TACA's Overview on Supplements
- Learn how to get supplements into your child.
- Consider starting basic supplements like calcium, magnesium, Essential Fatty Acids (CLO, EPA, DHA, flaxseed), probiotics and a multivitamin. Important notes:
- What your current pediatrician can do for you.
- You can ask your doctor to basic lab tests through your insurance covered lab for the baseline tests like:
- Urine quantitative organic acid test, gut pathogen metabolites on a stool culture (O&P x3, giardia, cryptosporidium), plasma amino acid panel, RBC (red blood cells), CBC, Plasma lactate, Plasma Acylcarnitine panel (Quantitative), Free and total Carnitine, Plasma Ammonia, Creatine Kinase, Baseline levels of Cholesterol, CoQ10, Vitamin E, Vitamin D, Comprehensive Metabolic Panel, C-reactive Protein, TNFa, IgG and IgE allergy panels, immune markers - especially IgA, viral titers for HSV 1 and 2, HHV 6, EBV.
- Please note that these tests cannot all be done at once as they'd require too much blood so you'll have to split them into 2-3 appointments depending on the age of the child. These tests should generally be done overnight fasting (10-12 hours).
- Genetic tests like Fragile X, Chromosomal Microarray, Rett Syndrome.
- Neurology tests like EEG (unmedicated, 24 hour minimum, including irregular discharges) and MRI (sedated). Some doctors won't like to order the 24-hour EEG, so you'll need to convince them.
- Urine quantitative organic acid test, gut pathogen metabolites on a stool culture (O&P x3, giardia, cryptosporidium), plasma amino acid panel, RBC (red blood cells), CBC, Plasma lactate, Plasma Acylcarnitine panel (Quantitative), Free and total Carnitine, Plasma Ammonia, Creatine Kinase, Baseline levels of Cholesterol, CoQ10, Vitamin E, Vitamin D, Comprehensive Metabolic Panel, C-reactive Protein, TNFa, IgG and IgE allergy panels, immune markers - especially IgA, viral titers for HSV 1 and 2, HHV 6, EBV.
- You can ask your doctor to basic lab tests through your insurance covered lab for the baseline tests like:
- Scholarships and Grants for Medical care
- Get a grant for a doctor visit.
- Investigate free travel for medical appointments
- Learn your insurance coverage
- Learn how to submit an insurance reimbursement for MAPS appointments as most MAPS doctors don’t accept insurance, so you will have to pay up front and seek reimbursement through your insurance plan.
- Educate yourself about the potential risks of vaccination.
- Read Doctor's recommendations for vaccines.
- Learn your state’s exemption laws before getting bullied by schools or doctors.
- Get ready for that MAPS appointment
- Know what an appointment will look like, what you’ll need to bring, what you should ask and much more.
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