Tuesday, April 28, 2015

Jett's Progress

Even though all of our kids share the T21 diagnosis, each of our kids is created uniquely. About half, like Jett, have had heart surgery... most, like Jett, have hypothyroidism... and others have extra challenges that Jett has not had to face.

With that said, I do believe that it's because of proper intervention — nutritionally, therapeutically, medically and environmentally — that Jett has been able to thrive as he has. I also support Jett's healthy diet with supplements.

So, I share these videos and information to spark inspiration, not frustration. This is what Jett has been able to do with the supports, strengths and challenges that he has. Your child's victories will be different. Your child will reach some milestones more quickly than Jett and he will have reached some more quickly than your child. I look forward to rejoicing in your child's victories and to give support with your child's challenges.

Jett's Milestones

The cutest pumpkin in the patch! 20 months
Jett rolled over at 5 months and drank from a straw at 6 months (the day before his heart surgery). He said his first meaningful word at 8 months, his first two-word sentence at 11 months (but didn't again until about 17 months). This post explains what I did to support his speech

At 10 months old, he no longer went #2 in his diaper. We practiced Elimination Communication. At 12 months old, he went #2 in the adult toilet for the first time. Here's how we supported potty training.
At 13 months old, he was four-point crawling after many months of army crawling, which is important for development. Here's what you can do to support proper crawling

At 14 months, he pulled himself up to lean against me and furniture and could walk a few steps when assisted (just as a test).  

At his 16 month speech evaluation, his language skills, both receptive and expressive, were deemed "average for his age"! At 16 months, he was a master stair climber (on hands and knees) and has a great love of words and books. Here you can see Jett pretending to read at 16 months.

At 17 months, he started sight reading! The words he first could recognize were: craaaaack, gulp, hug and whoosh. (I guess that reveals a little about his fun personality since all but one word is an onomatopoeia. He didn't always say the word, but loved to hear you read it out loud. Oh, and when he pointed to "hug," he expected you to hug him.) Here's a video of him reading at 18 months: at my husband's blog. And another of Jett reading 9 words in 1 minute 40 seconds. This post explains what I did to support his reading skills.

At 21 months, he has started to sound out words; "bus" was first. After that, he attempted to read any and all words out loud. It's amazing to me! It was so fun and rewarding to point to a word while I'm reading and hear him joyfully pronounce it. (A favorite book to read with me at this age was Whoo Goes There?) Here's Jett Reading Out Loud at 23 Months.

At 24 months, he could do the large-pieced wooden puzzles (like Melissa & Doug brand) on his own

At 25 months old, Jett read a whole book out loud, by himself for the first time. It was 27 pages long — The Eye Book by Dr. Seuss. It's late kindergarten level.

At 27 months, he sang "Twinkle twinkle little star, how I wonder what you are" completely on his own (just that stanza) and I hadn't been singing it at all that day either! So, although his expressive language (words coming from his own head and not mimicking) does need work, it is coming along nicely.

At 28 months, he loved to explore the house and get into everything he could. His favorite things to play with were my purse, the contents of the grocery bags, the utensils from the dishwasher and the sandbox. (Yes, he had toys — I promise! He still loved his magnadoodle.)  He has been using his potty for #2, since about 11 months old (it happened before we realized it so we're not sure when this started). At this time, he would tell us when he's hungry ("hungry" "bite" "piece" "food" and "eat"), what he wants to eat ("beans", "rice," "soup", "pizza" [gluten and casein free], "yogurt", "avocado" and "chicken" most often), when he's thirsty ("cup," "drink," "thirsty," "milk," "sip," "water," "juice" and "coconut [water]"). And he lets us know what he wants to do like "outside," "book," "bath" and "computer"  with his requests for "Mary Poppins," "Readeez" and "Winnie da Pooh" about 250 times a day. And he tells us when he's "hurt", "happy" and "hot." He tells us to "hurry" and "stop it." He also says "I love you so much!" but not that many other phrasesfrom his own head.

Jett could recognize and name numbers 0 to 100. (He says "ten-ten" for one hundred, for some reason.) He does count with me, but I have no idea if he has a concept of numbers yet. (Maybe he understands one, two and three? He seems to get those right...) He does know triangle, square, circle, rectangle and oval. This is what we did to support his math skills

At 33 months, he uses such sentences spontaneously and appropriately as: I dropped it! No, thank you. This is cold/soft/Brittany, etc. Where's the pillow? Mommy sit! I got it! Hmm let's see. Mommy…Daddy… Jett...together… family! He now can sing over 50 songs while they play and sometimes on his own, just from memory. (Most impressive is "Lordly is the Life I Lead" from Mary Poppins.)
He started to verbally let me know when he has to go #2.
And he can do an 8 piece jigsaw puzzles on his own without too much frustration.

At 34 months, he knew the concept of 0-10. He says "empty" to explain "zero." And he knew all his shapes, even complicated ones. I put both hands together and said, "a heart" and he tried to do it and said, "a polygon!" Late into his third year, Jett could also count by tens, identify patterns of 3 or less, sort and classify like items and add and subtract physical objects (not on paper, with symbols).

At 36 months, he enjoys activity magazines such as Highlights' High Five or NWF's Wild Animal Baby magazine that has stories, I Spy and cooking and craft activities. Yesterday, he said: "There's a mouse. A mouse goes 'squeak, squeak, squeak' everywhere!" He also enjoys his Pre-K worksheets where he loves to practice writing using a dry erase marker. He now substitutes lyrics to change up songs and make them express what is going on that day.

Jett stood independently and walked the same day, at 3 years old. He had a previously undiagnosed spinal issue. Once it was addressed, he stood and took his first tentative steps the next day! See Walking and Children with Down Syndrome to learn what I wish I would have known!

His auditory processing reached a level 3 at 3 years, 3 months. At 3 years, 4 months, he said his first 6-word sentence (that he made up and that I'm aware of): "No one will sing the blackbird song!" (It was late and we were too tired to indulge him.) 

Video of Jett, three years old, reading a word in English, translating it to Japanese and then spelling the word using hiragana, the Japanese alphabet: https://www.youtube.com/watch?v=llDeNMBSdEA

Jett, 4 years old
At 4 years old, Jett went through 5 hours of testing before he started 4K and he did not qualify as having an intellectual disability nor did he need speech therapy. He reads at a 5th grade level with comprehension at 2nd grade. No, these results are not typical -- not even for a neuro-typical child!

At 4 years old 1 month, we have such conversations as:

Jett: What's this? (referring to the song that is playing from The Jungle Book)
Me: It's 'I Wanna Be Like You'.
Jett: Noooo... Is this jazz?


Aunt Suzie: What are you doing?
Jett: (playing air guitar wildly) I'm singing the blues!
Me: The blues? What other kinds of music is there?
Jett: Reggae... Classical... Hip Hop... Salsa…

A video of Jett spelling at 4 years old, it was an off day.

Here's a video of Jett reading. He chose "An Alphabet of Dinosaurs." You'll see why it's hard to get a good video... 

The book has a Lexile® Measure of 830L, which means that the average 4-5th grader reads at that level.
At 4 years old, Jett got tested through the local school district and the school psychologist was excited to tell me that Jett could do all the math, including adding and subtracting (using pictures and manipulatives -- but the math "sentences" like 2+2=?, he didn't get all of those right, but he did get some right!)

Here is Jett right after he turned 5 years old, doing a little PSA for World DS Day. Turn up the volume and turn on the subtitles. 

Since Jett is so short, he just starting going #1 standing up at 5 years old while standing on a stool. (He's the size of a 3 year old because we haven't been able to get him on growth hormone treatment yet.) He's rather proud of this, so I had to include it. :)

He's able to write all of the letters of the alphabet independently, using the magna doodle. It has a very smooth surface that is easier to use than paper and pencil. He knew them all very early, but his fine motor skills needed to catch up with his brain! Here's what we did to support his handwriting skills.

Friday, April 17, 2015

Lithium orotate

Our Experience

At each re-evaluation, Jett's Neurodevelopmental therapist, Kay Ness, had been recommending that we try lithium orotate because of all the benefits to the brain, but since I add one supplement at a time, I didn't start him on it until he was 3 years, 10 months old. With only 5mg a day, the rest of his sound sensitivity and teeth grinding went a way! Yeah! I knew that both issues were mineral related and so I had seen great results with magnesium alone, but once I added the LO, they went away completely. So now I can finally vacuum without him freaking out. I can use the blender, even when he's in the room! And we can go to parties without having to leave early or take him into another room or outside for awhile to decompress from the sound over stimulation. I haven't exposed him to fire engines... his worst sound sensitivity yet, though! But he's fine with his baby brother crying (after about three months, he was okay even without the LO.)

At five years old, every once in a while, in the middle of the night, I hear Jett grind his teeth for a couple of seconds, but that's it. (We sleep in the same room.) And if he misses his dose of either the LO or magnesium, the sound sensitivity comes back just as badly within a day or two. So, LO is one of his must-have supplements.

What is Lithium Orotate?

Most people have heard of lithium used as treatment for bipolar disorder, mania and depression. But that is lithium carbonate and lithium citrate -- the pharmaceutical forms of lithium, which are chemical extracts unlike the naturally occurring mineral, lithium orotate.

LO is not a drug. Just like calcium and potassium, lithium is something that every human body requires for mental and physical health.

LO is very different than the other forms of the mineral. Whereas pharmaceutical drug forms of lithium require high doses to get into our cells, lithium orotate is only needed in a small amount because about 97% of it gets into the cell. The other great news is that unlike its pharmaceutical counterparts, lithium orotate is non-toxic, safe, has little to no side effects, and works on 70% to 80% of people who use it.

LO's bio-availability allows the mineral to penetrate the mitochondria, glia and lysosomes within our cells. The mineral stabilizes these lysosomal membranes, slowing the enzymatic reaction that leads to many of the negative side effects of other forms of lithium salts.

Overview of Benefits


Brain Protection
Studies show that LO can actually rejuvenate and build the grey matter nerve cells in the brain by up to three percent. (Hey, I'll take that!)

Anti-Aging Effects
Small amounts of LO have been shown to offer anti-aging effects to the brain.

Neuroprotection From Environmental Toxins
LO has been shown to protect the system from numerous toxins, particularly in the grey matter of the brain.

Helps transport folate and Vitamin B12 into cells
Without adequate Lithium, Vitamin B12 and Folate cannot get into cells and just floats around in the blood. Often due to a lithium deficiency, it may appear that the B12 level is adequate or even elevated B12 when in fact little of it is getting into cells where it is really needed.

Increases Lymphocytes
Lithium may increase the creation of more white blood cells -- lymphocytes.


Lithium should not be taken by those with renal or cardiovascular diseases, severe dehydration or exhaustion, sodium depletion, or in individuals using any form of diuretics or ACE inhibitors.

Research on lithium in relation to Down syndrome

Lithium restores cognitive function in Down syndrome mice
Date: December 3, 2012
Source: Journal of Clinical Investigation
Summary: Researchers report that lithium, a drug commonly used for the treatment of mood disorders in humans, restores neurogenesis in the hippocampus, a part of the brain strongly associated with learning and memory.

Gene-silencing strategy opens new path to understanding Down Syndrome
Date: October 22, 2013
Source: American Society of Human Genetics
Summary: Inspired by natural process that silences one copy of female mammals' two sex-determining X chromosomes during embryonic development, researchers develop way to silence extra chromosome of Trisomy 21.

Scientists show proof-of-principle for silencing extra chromosome responsible for Down syndrome
Date: July 17, 2013
Source: University of Massachusetts Medical School
Summary: Scientists have established that a naturally occurring X chromosome "off switch" can be rerouted to neutralize the extra chromosome responsible for trisomy 21, also known as Down syndrome, a genetic disorder characterized by cognitive impairment. The discovery provides the first evidence that the underlying genetic defect responsible for Down syndrome can be suppressed in cells in culture.

Experimental compound reverses down syndrome-like learning deficits in mice
Date: September 4, 2013
Source: Johns Hopkins Medicine
Summary: Researchers have identified a compound that dramatically bolsters learning and memory when given to mice with a Down syndrome-like condition on the day of birth. The single-dose treatment appears to enable the cerebellum of the rodents' brains to grow to a normal size. This is promising research involving sonic hedgehog.

Faulty stem cell regulation may contribute to cognitive deficits associated with Down syndrome
Date: September 11, 2013
Source: Stanford University Medical Center
Summary: The learning and physical disabilities that affect people with Down syndrome may be due at least in part to defective stem cell regulation throughout the body, according to researchers.


To receive the benefits of anti-aging for the brain, neuroprotection from toxins etc., 120 mg (~5 mg of elemental) daily is suggested.

Consider starting with 1 tablet of 120 mg (~5 mg of elemental) 1 – 3 times per day. This is most often sufficient.

I just gave a dose of 5 mg and then gave it twice a day until the symptoms went away. Then I went back down to 5 mg a day and have stayed at that dose.

Also, a daily supplement of 300-400 mcg folate is recommended as it enhances the brain's ability to utilize the protective properties of lithium orotate.

Dosage would continue with a small amount over a long period of time. 


These are the brands I like for those in the US.

These are the brands I like for those in the UK.

And from vitacost. Be sure to get $10 off your first Vitacost vitamin order.


Friday, March 27, 2015

Jett is Five Years Old!

Here's Jett's Birthday Mustache! (Chocolate avocado frosting)

In celebration of Jett turning five, how about a donation?

If you have ever been interested in donating to me, this would be a good time... I have an account at a nonprofit called Bridge to Healing that matches funds donated towards Jett and Oliver's alternative therapies and doctor appointments. $10 would be $20, etc. up to $1,000 per child!

1) Visit http://bridgetohealinginc.com/project/jett-and-olivers-journey/
2) Just click the donate button on the right and type Jett and/or Oliver Durkin.

And if you want to schedule a Skype or phone appointment with me, I bet $75 donation or above would get you one!! (Just let me know when you donate so that we can schedule one.)

The page hasn't been updated, so at 20 months old, Jett's brother, Oliver can now eat well. Once he was able to eat, he started growing! He can now army crawl is finally attempting to get up on all fours. And Jett is doing well, but has stopped growing again. So he's the size of a three year old. I'd love to be able to afford to continue therapy and services for both boys.

Otherwise, you are always welcome to donate on the right. Those donations will go toward their supplements and other care that the Foundation's Fund doesn't cover.

And anytime you are shopping online, just click the Amazon banner link on the right and I can get a percentage of your purchases at no extra cost to you.

Thanks for appreciating and helping to support this blog.

Saturday, March 21, 2015

Happy World Down Syndrome Day, Juniper!

Here's a video message from Jett to his friend, Juniper Naim.
Turn the volume up, click the CC and enjoy!
Feel free to share!

Wednesday, February 25, 2015

Need Extra Guidance?

Need some help putting together a plan for your child?

Have specific questions?

Let's get to it!

We can chat on the phone or Skype for an hour and then I can send you a personalized action plan in a follow up email.
    *$100 for an hour. Sliding scale available. 
Simply click here to set up a Skype appointment.
And here for a phone appointment.

If we Skype, there is a chance that Jett will be home and you can meet him as well. Let me know if that is a priority for you. :)

*These blog posts were designed so that you can find your own way and create your own path, but our kids are all individual so, understandably, you may have questions. I would love to continue to provide this service for free, but the requests are so numerous that it was interfering with my ability to care for my own family. I can't hurt my loved ones to help your loved ones, as I'm sure you can understand!

Any discussion we may have is given as suggestions only and should not be taken as a professional medical diagnosis or opinion. I'm not a physician. Be sure to check with yours!

Saturday, December 27, 2014

Seizures in the Down Syndrome Population: Information and Natural Treatment

How common are seizure disorders in the DS population?

Studies estimate that about 5 to 10% of people with DS have seizures, but in children with DS, approximately 1 to 13% do, with infantile spasm (IS) being the most common seen in the first two years of life. (1) Although the incidence of IS is similar between children with DS and neurotypical children, the diagnosis of seizures in children with DS doesn't happen as quickly as it does in the typical population. (2) That's why it's important to educate yourself so that you can recognize the signs and be prepared to advocate for your child, just in case.

What is a seizure and what does it look like?

The brain temporarily loses control of the body during a seizure. Instead of it sending a meaningful message to the body, it sends a "nonsense message" or a sudden surge of random "electrical activity," in a pattern of no particular usefulness, that takes over the brain for anywhere from one or two seconds to hours.  For children with seizures, most are the type associated with infants/toddlers and fever; these are short and rarely cause health problems or lasting side effects. However, if a person has more than one seizure not associated with fever, then the condition is called "epilepsy." (1)

Types of seizures
Petite Mal
Infantile spasms
An IS many not affect the infant's state of consciousness. It can look like a quick drop of the head and/or shoulders if the baby is sitting or standing up. (1) But they do show up differently so are categorized into three subtypes (flexor, extensor,and mixed flexor-extensor) based on what body positions they are in and the patterns of muscle involvement during the seizure.
Flexor spasms involve bending of the neck, trunk and extremities, resulting in jack-knifing at the waist and a self-hugging motion of the arms.
Extensor spasms consist of extension of the neck, trunk and extremities.
Mixed flexor-extensor spasms involve combinations of the above. While often confused with myoclonic or tonic seizures, spasms represent a distinct seizure type. (3)
Absence seizures
Absence seizures involve brief, sudden lapses of consciousness. They're more common in children than adults. The child may look like he is staring into space for a few seconds. This type of seizure usually doesn't lead to physical injury.

An indication of a simple absence seizure is a vacant stare, which may be mistaken for a lapse in attention that lasts 10 to 15 seconds, without any subsequent confusion, headache or drowsiness. Signs and symptoms of absence seizures include:
  • Sudden stop in motion without falling
  • Lip smacking
  • Eyelid flutters
  • Chewing motions
  • Finger rubbing
  • Small movements of both hands
Absence seizures generally last 10 to 15 seconds, followed immediately by full recovery. Afterward, there's no memory of the incident. Some people have dozens of episodes daily, which interfere with school or daily activities.
A child may have absence seizures for some time before an adult notices the seizures, because they're so brief. A decline in a child's learning ability may be the first sign of this disorder. (4) For possible natural treatment of absence seizures, see this article.
Drop seizures

In atonic (head-drop) seizures, the eyelids may droop, the head may nod and the child may drop things and often falls to the ground. These seizures are also called "drop attacks" or "drop seizures." The child usually remains conscious. These seizures typically last less than 15 seconds. (5)

Reflex seizures
Reflex (myoclonic, "startle") seizures are a type of reflex epilepsy in which seizures are provoked by loud noises or sudden surprises. Most patients with startle epilepsy are only sensitive to one sensory modality (i.e. temperature, taste, sound, pressure). However, it is the unexpected nature of the stimulus rather than the sensory modality that characterizes startle epilepsy.
Children with startle epilepsy usually have static cerebral lesions and developmental delay. Many of them are hemiparetic, meaning half of the body is partially paralyzed, and it is the weak side of the body that is primarily involved in the startle seizures. Startle epilepsy is often associated with disorders such as infantile hemiplegia, Down syndrome, anoxic encephalopathy and cortical dysplastic lesions.
These seizures usually last less than 30 seconds. The seizure begins with a startle response, followed by a brief tonic phase. Children sometimes fall to the ground and experience clonic jerks. Responsiveness to the stimulus decreases as a result of repeated exposure to the stimulus. Spontaneous seizures also occur in people with startle epilepsy, but are infrequent in most cases. (6)
Grand Mal
Another type of seizure is the generalized "tonic-clonic" seizure; this type of seizure involves the whole body, with stiffening of the trunk and jerking of the extremities, followed by a period of sleepiness. This is what people usually think of when they think of seizures.
Possible signs and symptoms of grand mal seizures:
  • Aura. Some people experience a warning feeling (aura) before a grand mal seizure. This warning varies from person to person, but may include feeling a sense of unexplained dread, a strange smell or a feeling of numbness.
  • A scream. Some people may cry out at the beginning of a seizure because the muscles around the vocal cords seize, forcing air out.
  • Loss of bowel and bladder control. This may happen during or following a seizure.
  • Unresponsiveness after convulsions. Unconsciousness may persist for several minutes after the convulsion has ended.
  • Confusion. A period of disorientation often follows a grand mal seizure. This is referred to as postictal confusion.
  • Fatigue. Sleepiness is common after a grand mal seizure.
  • Severe headache. Headaches are common but not universal after grand mal seizures. (7)
Why be concerned about seizures?

Seizures can cause brain damage. Regressions (loss of previously acquired skill) can occur. A decline in a child's learning ability may be the first sign of the more subtle type of seizures -- let that be the last sign!

What are options for seizure treatment?

A Review of Traditional and Novel Treatments for Seizures in Autism Spectrum Disorder: Findings from a Systematic Review and Expert Panel Richard E. Frye,1,* et al, is an excellent study that has a lot of good information on different treatment methods including some ways to help recover damage done. It explores the use of  l-carnitine, multivitamins, and N-acetyl-l-cysteine in mitochondrial disease and dysfunction; folinic acid in cerebral folate abnormalities and early treatment with vigabatrin in tuberous sclerosis complex; magnesium with pyridoxine, omega-3 fatty acids, the gluten-free casein-free diet and low-frequency repetitive transcranial magnetic simulation; Zinc and l-carnosine as well as Homeopathy and Neurofeedback. (8)

As mentioned in A Review, seizures can also be related to cerebral folate deficiency, which I have written about in a previous post. Jett does not have a seizure disorder, but his little brother, Oliver, suffered seizures while undergoing a medically-induced coma in NICU, so I've researched how to protect the brain from and recover from seizures and am implementing these strategies for Oliver. 

Not discussed in the above article is the use of curcumin to help with major seizures. See:
Protective effect of curcumin against seizures and cognitive impairment in a pentylenetetrazole-kindled epileptic rat model." In this study, the results indicate that pretreatment with curcumin improves seizures, oxidative stress and cognitive impairment in PTZ induced in rats. These results thus suggest the potential of curcumin as an aid in epilepsy treatment both to prevent seizures as well as to protect against seizure induced memory impairment. (9)

Also see the Effect of Curcumin on Sub-Therapeutic Doses of AED’S And Long Term Memory
In Mice Induced GTC Type of Seizures in Rats.

Check out these pubmed articles for information on bacopa for seizures.

At 16 months old, Oliver is on curcumin, l-carnosine, bacopa, folate, B12, magnesium, zinc and fish oil.
But super-sleuth mom, Anne Holtz, actually found another way to stop her son's seizures! 
Here is her candid story:

Treating Infantile Spasms (Benign Myoclonic Seizures) Naturally: Our Journey
by Anne Hoelz

We have a five and a half year old son who has Down syndrome. He is the coolest, cutest little boy in the world! Okay, I might be a little biased, haha. He definitely is very naughty at this age! Anyway, let’s get on with our story . . .

Our son, Kaiden, developed Infantile Spasms (IS) right around seven months old, after some health issues relating to his prematurity and I believe, the vaccinations he received at his six-month well visit. I have a theory – well, I have lots of theories – but I feel that he should not have been vaccinated since he was unwell at that visit.

Kaiden enjoying a boat ride.
One of the vaccinations he received was the DTAP vax – there is a correlation between infants of that age receiving that vaccination and developing this particular type of seizure (10)One of my theories is that the DTAP caused brain inflammation, which possibly lead to Kaiden’s IS. I say "possibly lead to" because his seizures are also somehow related to food. I don’t know for sure if the DTAP played a role or not – maybe the DTAP caused brain inflammation that led to his food sensitivities; I really don’t know.  In the years since I’ve done my initial research, an interesting thing has come to light: studies done regarding the SCN1A mutation and infantile epileptic encephalopathies, which suggests the genetic mutation could be responsible (11). We have not had Kaiden genetically tested for anything other than Down syndrome.

Kaiden received breastmilk as his main source of nutrition until that 6 month well visit, when I was instructed to start him on solids whether he was ready for them or not. At that time, I was already holistically minded, but still bringing him to a western medicine pediatrician. When the seizures started, I noted that both carrots and sweet potatoes aggravated the problem. I set up tests: I tried both foods separately on three different occasions, with the same result = increased seizure activity. 

The neurologist we saw was supposed to be “the best” and the doctors told us how lucky we were that he decided to see Kaiden, since he was nearing retirement and not taking new patients anymore. Oh great, how wonderful, I think to myself. Full of optimism, we visited the neurologist. Now here’s the thing: neurologists aren’t nutritionists. When I brought up my findings regarding the connection between sweet potatoes, carrots and Kaiden’s seizures, the neurologist flat out said “food doesn’t have anything to do with it.” He didn’t care about my observations and wouldn’t listen to anything I said. In fact, in his official report to Kaiden’s pediatrician, he wrote “I doubt an underlying metabolic abnormality.” He wasn’t just misinformed about nutrition – he was also misinformed about IS. (So much for being “the best”!) 

He told us how lucky we were that Kaiden had DS, so the seizures wouldn’t affect him cognitively since he would already be cognitively delayed. Basically, that we had nothing to worry about and even if he wasn’t treated, he might just outgrow the IS in a few years. Oh so wrong. SO WRONG. I knew the seizures were affecting him cognitively. He’d completely changed from a happy active baby to, as another DS with IS mom put it, a "zombie baby." The neurologist wanted to use topamirate, and told us it could cause permanent vision damage. (12) Armed with what “knowledge” we were given by the neurologist, we felt comfortable treating holistically rather than giving Kaiden anti-seizure meds that had possible permanent side effects.

As a more holistic approach, the neurologist recommended we start Kaiden’s treatment with Vitamin B6 (13). And, unfortunately, got nowhere. By that time, Kaiden was having approximately six clusters of seizures each day, with the clusters lasting anywhere from 10-45 minutes and then he’d scream and cry after each spasm. I wanted to try an even more holistic route so we chose Native Remedies Epi-Still (14) and Triple Complex Nerve Tonic (name has since changed to Triple complex Calm Tonic: (15). Together, they reduced Kaiden’s seizures to 4-10 single spasms per day. In doing more research (I was eating, breathing and sleeping research!) I also decided to give Kaiden some OTC calcium to help support his nervous system. It didn’t reduce his seizures, but we saw such a dramatic result overnight. He was so much more active, alert and loud – this is when we started looking into TNI (Targeted Nutrition Intervention).

When we ran out of the Native Remedies supplements, we moved to Dr. Christopher’s Ear & Nerve Tonic (16 - this is an info only link, they do not sell to the public, but their products can be purchased on just about any herbal site and on Amazon).  His seizures didn’t lessen in frequency, but rather in severity, in that some were barely noticeable. He would have some though, that would lock his body up for a few seconds and it would take a bit for him to snap out of it when it was over. The other benefit we saw with the Ear & Nerve Tonic was a HUGE increase in Kaiden’s balance!

Now, ever since the carrots and sweet potatoes early on, I suspected food was playing a role in his IS. I kept both seizure and food logs, looking for a connection. Kaiden was falling further and further behind developmentally and everyone from doctors to family and friends said it was “just DS” and that I needed to expect it. But Kaiden would have lucid moments where he’d do normal baby things – sometimes it would last minutes, sometimes maybe an hour. I knew there had to be more going on and my intuition strongly said food HAD to have something to do with it. 

Problem was, I wasn’t taking into account what I was eating. Kaiden was still getting my breastmilk, and it wasn’t until I ate an eggplant dish for the first time and saw how his now-reduced seizure rate skyrocketed, that I found another connection. Then a few months after that, I ate a good helping of green peppers (I had ditched green peppers in Kaiden’s early months - pre-seizures - as they gave him a rash via my breastmilk) and his seizure rate skyrocketed again. It took me a few days to figure that one out – I literally walked around the house saying “What the F@#)$*^% do green peppers and eggplant have in common that he reacts so badly to them?” And Google gave me the answer: they are both nightshades. 

Nightshades are potatoes, tomatoes, all peppers – sweet and hot, tomatillos, ground cherries, eggplant, paprika, goji (wolf) berries, etc. Hardly a meal went by in our house that didn’t have nightshades in it! I cut out all nightshades from both my and Kaiden’s diets and within a couple days saw his seizure rate drop to 2 – 3 seizures per day. A few days later I ate some nightshades (tomato, mayo with paprika) and his seizure rate increased. Eliminated nightshades again, saw the IS drop again. Then ate them again (mustard with paprika) and watched his seizure rate go up again. Ding, ding, DING we have a WINNER!! I eliminated nightshades completely and within a week, his seizures were completely gone. GONE!

But eliminating the seizures was, in my opinion, only a side effect of eliminating nightshades: Kaiden’s development began to FLY! In three short weeks, he’d gained three to six months of development. By six weeks, he’d gained 9 – 12 months in development and continued learning. My theory is that the nightshades overloaded his nervous system so much that his brain shut it down.

Now, four and half years later, I think I know why carrots triggered his IS – carrotatoxin (falcarinol), but I still have absolutely no idea why sweet potatoes did too.

I wish I could say that stopping the seizures was the end of the experience, but they robbed Kaiden of his speech. It had been developing normally, but then with the seizures, he lost everything except vowel sounds. We waited a while to see if it would come back on its own given how well his other development was going, but no such luck there. With omega oil supplementation, I can tell that his communication has exploded and he has gained some consonants back, but it is still not words, or is even close to words. I had to push the school system to recognize that he has both speech and motor apraxia – having both of those, expressive communication is extremely difficult for him. We’re now working with a speech device and program he’ll be able to use for the rest of his life, if he is never verbal.

Will this method of IS treatment work for your child? I honestly don’t know. It might, it might not. I do believe brain inflammation and the buildup of nightshades’ glycoalkaloids both played a significant role, as well as what carrots and sweet potatoes put into him early on. After eliminating nightshades from my diet for Kaiden, I found I was sensitive to them, too. But not everyone is sensitive to nightshades. I’m certainly not sensitive to carrots.

My point with all of this is – doctors don’t know everything. Even specialists who think they have all the answers can clearly be wrong. Doctors are not nutritionists. Nutritionists can be wrong, too. Follow your gut; intuition is rarely wrong. If the “specialists” aren’t willing to work with you, find a doctor who will. They don’t have to be a specialist; they may be willing to learn right along with you. Don’t let anyone tell you it’s “just DS”. Metabolic disorders can be treated; it’s just a matter of finding what works for your child’s individual needs.

Our journey has been a long one, and it’s still going on. Inspired by Kaiden’s needs, I wrote a paleo cookbook called Cavemom’s Cooking and Volume 2 is currently in the works! If you’d like to read more about us, please visit my blog at The greenchild Chronicles, and our introductory post at The greenchild Chronicles Introduction.

Other foods to avoid

There was a 2.6-fold higher rate of febrile seizures [4.2% versus 1.6%, OR = 2.6, 95% CI = 1.3-5.3], a 2.1-fold higher rate of epilepsy comorbidity [3.6% versus 1.7%, OR = 2.2, 95% CI = 1.1-4.7] and a 4-fold higher rate of simple partial seizures [1.2% versus 0.3%, OR = 4.8, 95% CI = 1.0-23] in the autistic children fed soy-based formula. See Soy infant formula and seizures in children with autism: a retrospective study. Westmark CJ. (19)

Further Reading

Complementary and Alternative Therapies for Epilepsy
The book is edited and co-authored by Dr Orrin Devinsky, a neurologist at NYU, one of the top epileptologists in the country.

Cavemom’s Cooking a paleo cookbook inspired by Kaiden's story, written by Anne Hoelz.

  1. http://ds-health.com/epilepsy.htm
  2. http://www.ncbi.nlm.nih.gov/pubmed/25309120
  3. http://neuro.wustl.edu/patientcare/clinicalservices/pediatricepilepsycenter/patientfamilyphysician/infantilespasms/.
  4. http://www.mayoclinic.org/diseases-conditions/petit-mal-seizure/basics/definition/con-20021252
  5. http://www.epilepsy.com/learn/types-seizures/atonic-seizures
  6. http://epilepsyontario.org/startle-epilepsy/
  7. http://www.mayoclinic.org/diseases-conditions/grand-mal-seizure/basics/symptoms/CON-20021356
  8. A Review of Traditional and Novel Treatments for Seizures in Autism Spectrum Disorder: Findings from a Systematic Review and Expert Panel Richard E. Frye,1,* et al http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3859980/
  9. Protective effect of curcumin against seizures and cognitive impairment in a pentylenetetrazole-kindled epileptic rat model." http://www.ncbi.nlm.nih.gov/pubmed/20840851
  10. http://en.wikipedia.org/wiki/Epileptic_spasms
  11. http://brain.oxfordjournals.org/content/130/3/843
  12. http://www.topamax.com/tools-resources--safety-information.html
  13. http://www.merckmanuals.com/professional/nutritional_disorders/vitamin_deficiency_dependency_and_toxicity/vitamin_b6.html
  14. http://www.nativeremedies.com/products/epi-still-brain-and-nervous-system-health.html?ysmtac=CMP&ysmpla=GMF&gclid=CLSdqYiYo8ICFaVDMgodG2sANQ
  15. http://www.nativeremedies.com/products/calm-tonic-relieve-stress-symptoms.html
  16. https://www.etsy.com/listing/130168935/cookbook-paleo-cavemoms-cooking-simple?ref=shop_home_active
  17.  http://thegreenchildchronicles.blogspot.com
  18. http://thegreenchildchronicles.blogspot.com/2010/06/introduction.html
  19. Soy infant formula and seizures in children with autism: a retrospective study. Westmark CJ. http://www.ncbi.nlm.nih.gov/pubmed/24622158


Friday, November 14, 2014

Finding Time/Jett's Daily Schedule

Parents ask me all the time about how I've been able to fit everything I do into one day. So I've put together an overview and some sample schedules from various times in Jett's life, that I hope you will find helpful.

First, I stopped working when Jett was born so I am a stay-at-home mom. And for the first few years, Jett took two, two-hour naps a day, so that's when I worked on my blog. The screen time definitely made me behind in preparing for when he woke up, but I needed to put the blog together so I had an organized place to keep my notes and to figure stuff out in my head. (Since nothing like my blog existed at the time.) It was too much info and I would have been more crazy, I think, if I hadn't put it together. So, in the long run, it saved, and still saves me, a lot of time. I'm a "have to know" person and I'm a workaholic w/out a paying job so I had to funnel my energy somewhere.

I also only slept about 6 hours a day. 
At around age 2 1/2 - 3 years old, Jett may have slept for 2 hours, if I was really lucky, but mostly he slept an hour or skipped the nap altogether. But, at that age, he was cognitively more advanced and could actually independently play some, so I could work on the blog when he was awake. Since he had many signs of autism (almost cured, a couple more symptoms left), he did stimm sometimes when I'm wasn't right with him, but I immediately stopped and redirected him if that occurred. 


Fortunately, my husband understands that keeping the house up has to take a back burner to figuring out this information and attending to Jett's needs. He sees the results in Jett and helps out around the house as he can. Jett's therapy, constantly changing biomedical "profile" and getting three healthy meals out a day are my priorities… As Jett gets older, I see him helping me with the cooking (lots of learning opportunities there! In fact, a lot of his homeschooling will take place in the kitchen) and cleaning so I see a light at the end of the tunnel. I hate a house that is not perfectly kept up, but I can not possibly do everything!

One thing we've done is box up our "extra" stuff. So now, we just have a few plates, cups, etc. out so that all the dishes fit in one dishwasher load. That way, as we eat/cook, the dishes go in, and at the end of the night, they all get washed and are ready for the next day. So there's not enough dishes to lay around. Same for clothes and towels, we just wash what we have out w/out having lots of dirty towels/clothes that need to be washed piled up. All out of season clothes are in vacuum bags in the closets. There's enough that the dirty clothes can fill the laundry basket, some can be washing and some drying…. Less to keep track of. You just have to be creative...

At four years old, Jett does insist on helping out... He often sings the Daniel Tiger song: "Everyone one is big enough--big enough to do something!"


I've learned to set aside one day a week to devote to cooking. Have neighbor/young relative watch the kids while you are at home. (I can get his 12-year old cousin for about $10.) Cook as much as you can! Prepare as many make-ahead meals as possible. A good way to do this is to grocery shop and cut up all the veggies etc. and put them in freezer bags so assembly is quicker later. As soon as you get home, divide up your bulk buys of meats into usable portions, etc. I separate mixtures of cut fruits and veggies and protein powder into bags so I can just pull one out, dump in the blender, add liquid and make a smoothie real quick. I also make up a month's worth of Jett's "Larabars" (recipe is on my facebook page... or not, LOL... here's a similar recipe. I do add chia seeds, sun nut/pumpkin seed/tahini butters and soaked, then toasted nuts and oats as well) and freeze. (I freeze everything in glass jars or toxin free wax paper covered in aluminum foil [I don't let the foil touch the food].) I am working on a post about this, but quick ideas that freeze easily: We buy about 10 gluten free non GMO corn-based pizza crusts and I make all of them at one time and freeze them uncooked. I make up quiches, chicken pot pies, spinach-lasagna noodle rolls (no Jett can't eat it), breakfast-friendly cookies, chicken nuggets, cut up sweet potato fries and enchiladas. Once a week, my husband makes up a huge patch of healthy pancakes or waffles. See these freezer to crock pot recipes for more inspiration.

Appointments/Errands with a baby/toddler

I schedule Jett's doctor's appointments/errands around his sleep pattern so that the restraints of the car seat won't cut into his crawl time. He wakes at 10am, so I schedule morning appointments at 11/11:30 am. This is because most of our appointments are an hour from the house. So, I ease him out of bed at 9:30 (change his diaper and clothes in the bed) and he falls back to sleep in the car. He wakes up a half an hour before the appointment so, on the way there, I have time to feed him his supplements and breakfast (something he'd be sitting for anyway). My mother comes with me (retired, lives 20 minutes away) or my husband drives us to appointments so that either my mother or me can sit in the back and make sure that Jett is constantly cared for and stimulated. At doctor's offices, I lay out a thin blanket and toys for him to play with on the floor. (Keeping him on the blanket is another story.) People seem to think it's fun to watch him play. I try to keep him out of the line of traffic and I've yet to have anyone ask me to put the blanket away or anything.

I try to schedule it so that we'll be back in the car at 2 PM, his normal nap time. An hour later, we are home and he's well-rested and ready to rock and roll (and to go on his potty).

At 3 years old, I try to schedule it so that he's in the car at around 3 PM because that is when he likes to take his nap.

At 4 years old, I just keep a stack of children's encyclopedias, dictionaries and thick books of stories and poetry (all of his choosing) in the car. (See store above for his favorite books.) I look in the rear view mirror and see him smiling behind the books. :) If I'm really lucky, he will fall asleep! That would usually be around 4 PM, for some reason.

Our Schedules

I have had many requests for our schedule, but I've been hesitant to post because I've never had a perfectly scheduled day! So, don't think for one second that I do everything on my schedule everyday. The other thing is that a schedule is completely dependent on you. For me, I need structure and to be focused, but I have a huge need to be able to move it around, especially according to what Jett is interested in that day. So, the neurodevelopment exercises give me structure and a list focuses me on priorities, but when I do them is dependent on Jett's cues. If he is in the mood to explore all over the house, that is what I encourage him to do. If he is wanting me to interact with him more, that is what we will do. If he asks to go outside or for "worksheets" or a puzzle, etc. that's what we do at that time. When he was younger, independent play was minimal and he insisted that I read to him a lot. And he got better and better at independent play and reading a lot on his own. Jett and I are in this for the long run. We are partners that need to work together in a lasting educational relationship. Children learn best when their basic needs are met, are happy and at play. So I do not push Jett, but rather gently "one up" him at every opportunity.

Schedule at Baby/Toddler stage
(When I say "now," Jett was 2 1/2 - 3 years old.)

7 - 8
:00 AM I get up, each one square of 85% chocolate, and start my breakfast (thaw gluten free English muffin & heat pan for eggs). I load or unload dishes. Get diapers or other laundry running and/or in the dryer. (I eat my chocolate first so that I don't miss out on it! I can't tolerate caffeine after noon or it keeps me up all night.)

Cook my breakfast and a soft scrambled egg that I set aside for Jett. Eat breakfast while checking email/blogging/working on Down Syndrome OPTIONs, (of which I am president).

Roast vegetables in the toaster oven, cook beans, rice or gluten free pasta, etc. for Jett's meals that day. This takes minimal prep time, but 20-60 minutes cook time. After it's cooled, I freeze the excess.

Get all of Jett's supplements ready for the day: 1) w/juice first thing 2)with breakfast 3)with lunch 4)with dinner  5) on an empty stomach w/juice before bed

Jett gets his supplement mix 4-5 times a day.
1st thing in AM (needs to be on empty stomach), under tongue or spray: B12
Next: l-carnosine, probiotics, l-tyrosine, nutri-med (thyroid) in goji berry juice or elderberry extract & coconut water. I put royal jelly on the edge of the cup so he gets the honey mix with every sip.
At breakfast mixed in applesauce or bananas and honey: 1/4 zinc, 1/2 mlybd, curcumin, chokeberry powder,  1/3 vitamin C, vitamin D3, 1/2 folinic acid, ginkgo, astralagus, fermented CLO, coconut oil, 1/2 acetyl carnitine, (I was able to stop adding the honey by 2.5 to 3 years old.)
Note: Thyroid meds should actually be given first thing, on an empty stomach (I didn't realize that then.)

At lunch mixed in bananas, applesauce, or sweet potato, etc. and honey: 1/4 zinc, 1/2 mlybd, NeuroProtek, chokeberry powder,  1/3 vitamin C, 1/2 folinic acid, ginkgo, astralagus, coconut oil, 1/2 acetyl carnitine, zeaxanthin, wild blueberry powder, thyroid

At dinner mixed in coconut milk yogurt and bananas: 1/2 zinc, a touch of mlybd (vitamin C needs minerals present), chokeberry powder, 1/3 vitamin C, 1/2 folinic acid, ginkgo, astralagus, coconut oil, wild blueberry powder, thyroid

2 hours before bed, mixed in goji berry juice or coconut milk probiotic drink: 5-HTP, l-orthinine, and magnesium 

See the Rainbow Recipe at the OPTIONs website under nutrition for the recipe I use for most of Jett's meals.

9-10:00 AM Jett wakes up, and my husband sets him right outside the bedroom door. (Husband works late so sleeps late.) Jett usually starts playing with the musical toys (piano, shakers, tambourine, etc.) that I keep in a box right outside the bedroom door. (I have a small box of toys in every room. Yes, lovely decor!)  This gives me a little time if I'm mid-sentence in an email or something. Plus, the noise alerts me that he's awake..
I take Jett to the child seat on the toilet and give him his B12 drops and first juice/supplements with a dropper (sometimes he just drinks it). Then he gets a diaper change with iodine, nose cleaning and therapy I can do such as RMT and MacDonald interactions, etc. (He gets an enthusiastic lesson in colors since I use colorful cloth diapers. Once he knows them in English, you can teach him in another language of your choice.) I end with lifting him with a dowel then swinging. I just incorporate my ND program to suit whatever mood he's in. Sometimes he's super playful and initiates these exercises on his own and sometimes he just wants the diaper change over and to get down on the floor.
Turn on music (pandora.com). (I start with Mozart until he realizes it and insists on Julie Andrews or some other music where the words are distinguishable. A really good station is Sesame Street.) Set him down for free exploring time. If I haven't finished making his breakfast and he's not getting into something on his own, I give him a hand full of organic, gluten-free cereal in a silicone ice cube tray for him to feed himself and to practice fine motor skills.

10:30 AM I put his therapy glasses on and turn on Readeez/Brill Kids/other computer based educational program so I can feed him his small bowl of supplements. (You can subscribe to my youtube channel and see what I play for him.)

After supplements, I give him a "nibbler tray" (finger foods that aren't too messy to clean up: raw zucchini circles, gluten free cereal, celery sticks, chunks of chicken, apple cubes) to practice fine motor skills. Or I put him in his chair w/tray and let him feed himself the rest of his food.

Once he's finished eating, I clean him off. I sweep up and get the automatic mop (SCUBA) started in a different room every day. I do the same for the Roomba (automatic vacuum). For the carpeted areas, I just take a broom and sweep all the toys quickly in a pile and put them in a toy box I have in each room or just sweep the toys onto the blanket he's played on and put the blanket and contents on the sofa or chair.

 Then I and take him outside to play, shirtless and sunscreenless in the sun (ingested coconut oil and fermented cod liver oil offer sun protection). He plays in the dirt with sandbox toys, we write/draw with chalk all over the sidewalk, he slides, plays with his push toys and balls. I incorporate therapy when I can (swinging, walking, etc.). I read my email via cell phone when he's engaged on his own. When back inside, I stop the SCUBA and Roomba, do the quick minor cleaning to them and put them away.

When he was younger and less able to play on his own, his schedule was like this after eating:
Music off, on floor, while playing: First set of sight words & math lesson.
Picture flash cards.
Turn music back on. I go to the more active play area. Play ball, have him crawl through his tunnel, have him climb up slide and go over, etc.
Second set of sight words & math lesson. Then I set out toys that makes him crawl around a lot and let him free play. (He enjoyed chasing a morocco, ball or cup around the house.)

noon Stair climbing/book.
Music in headphones.
Pinhole glasses while watching Readeez. (15 minutes)
Third set of sight words & math lesson. Stair climbing/book.
I eat lunch.

1:30 PM nap time-- tactile sequence and then breastfeeding until asleep.

2:30 or 3:00 PM (When wakes up from nap.) When he was younger, he'd go on his potty & watch Between the Lions which is recorded on the DVR. Now, when he sits on the child seat in the bathroom toilet, I play a story on my iPhone from a couple of free story websites. That way we get some auditory processing in.

Fourth set of sight words & math lesson.
face to face alphabet
language related photo cards

2-4:00 PM Now that he's older, he sleeps from 2-4pm. I get done what I can while he sleeps. I have lunch ready for him for when he wakes up.

4:00 PM Feed him supplements. Let him feed himself in high chair while I do dishes or eat.
Read books.
6:15 Go for a walk, play outside until dark.
9:00 PM Give him a bath. (I have a glass shower, so I sometimes shower at the same time he's in the bathtub, but I don't know that I'd recommend this. If I do shower, I write sentences backward to him and he reads them to me. Sometimes I bring the laptop in and work while he plays in the tub.) In the tub, he has a xylophone, letters that stick on the side of the tub, stacking toys, a boat, etc. At 26 months, he makes up crazy words and reads them out loud.

Last set of sight words & math lesson.
Free exploring time in his room & swinging/eye exercises or reading (depending on how active he feels.)
Read at least five books.

10:00 PM Give him supplements in juice. Feed him last supplements and dinner.
Last diaper change w/essential oils on belly and feet as needed.

11:00 PM When he was younger, I'd pick him up and give him tactile stimulation/massage or read a book to calm him down.
11:15 PM breastfeed until he falls asleep. Set him down.
Clean kitchen, load dishes.
Set food aside for breakfast.
Pull out his foods for the next day from the freezer.
Put something together for Daddy's dinner.

12:15 AM Daddy comes home. Eat dinner with him.
1-2:00 AM Go to bed.

Our Schedule at 4 years old (with addition of baby brother, Oliver, 15 months old, who is recovering well from a brain injury)

8:30 AM We all wake up (all in the same room, so it's simultaneous...)
1/2 of his Thyroid meds (He can't eat any food for a 1/2 an hour after thyroid meds.)
Jett puts on his "eating clothes" (so that supplements won't stain, etc.) (I lay out his clothes on the floor and he puts them on himself. If it's winter, I lay them in front of the heater.)
I get dressed and eat my square of chocolate.
Jett has free time while I attend to Oliver's diaper, essential oils application, clothes change and while Daddy makes breakfast upstairs (yes, he's a keeper!) Jett can get into his Lego's, musical toys, blocks, books, etc. on his own. I put essential oils on Jett as well.
I switch over the laundry from washer to dryer to laundry basket, etc. Jett helps by separating the socks before they go into the washer. He also will sort things into baskets (but we don't put them away yet).

9:00 AM We move upstairs. Music is on and Oliver gets floor time (either in kitchen at Daddy's feet or near where Jett and I are. We put him on a big blanket and put his favorite stuff on the perimeter like a keyboard, huge stack of blocks to knock over, a ukelele, a xylophone, tray of wooden food, books, etc.) I feed Jett his supplements (yes, I still do this because I want to make sure he eats it all. I will be transitioning to small capsules ASAP so he can do this on his own, with me watching.) During supplements, we do his Spanish or Japanese. For Spanish, we are using the Play and Learn Spanish book and CD so we learn one song a week and the corresponding vocabulary and conversation. I use Google translate on my phone for proper pronunciation of each word. He will take a bite of supplements for each new word he hears. (Yes, he's a nerd!) For Japanese, we are using the Teach Me Japanese book and CD in the same manner.

9:30 AM Breakfast! Jett feeds himself, of course. Oliver is in the high chair feeding himself. I'm eating and feeding Oliver his supplements too (or Daddy is, depending). Jett goes through his My Second Dictionary and picks out his word of the day. (He chooses a word that he hasn't seen before.) We take turns making sentences with the new word.

by 10:30 AM breakfast is finished. When Jett's done, he tells me and we wash off and Jett, Oliver and I go outside or I turn on a "movement show" like Bo on the Go!, Barney Dance, the Wiggles (only ones with Closed Captions for Jett), Rock N Learn's Dance with Animals, Get Fit America for Kids, Little Yogis or Yoga Kids. Once Oliver is done, he joins Jett on blankets on the floor. Daddy or I clean up the kitchen. Daddy escapes downstairs to do his freelance work.
If Jett has homework, this is when we do it. If I'm running behind, I might feed Jett his supplements while he's dancing.

11:00 AM Brush teeth, potty and put on school clothes. I give Jett a lot of time here to do it himself as much as possible. At this point, he does it all except for shoes and jacket.

11:30 AM Jett, Oliver and I are out the door to drop him off school. (This is when I would schedule any appointments for myself or go grocery shopping and be back in time to pick Jett up from his 3-hour school day. On Thursdays, I take Oliver for the next 5 hours to his various therapies. On Jett's days off school, I take Jett to his therapies for the next five hours.) If the weather is bad, or someone (grandma, grandpa) is available to watch Oliver, he stays and plays with them.

12:00 PM Oliver and I are back. I put down Oliver for a nap.

12:30 PM I make lunch (for me and also for Jett when he gets home), eat lunch, clean up, get Jett's supplements ready for the next three days. This is also when I schedule Skypes with parents.

1:30 PM Oliver wakes up (Sometimes he only sleeps for ten minutes -- but I'm being optimistic by leaving an hour and a half here!)
Oliver gets fed then we do his MNRI and ND exercises. 

2:30 PM Oliver and I get Jett from school. (Or I leave him if some sweet relative is available!) Jett gets the second half of his thyroid at 2:45.

3:00 PM Jett takes off his shoes, goes potty, changes into his eating clothes. He has free time. Sometimes he's in the mood for another movement show.

3:15 PM (Half an hour after thyroid dose.) Jett gets his second set of supplements. He eats lunch. Oliver has floor time, either in kitchen with me while I make/start dinner or nearer to Jett. He helps me sweep up under the table. He has his own broom and dustpan and holds the dustpan for me then dumps it out.

4:00 PM Jett has free time. We go outside whenever possible. I do MNRI/ND exercises with him or with Oliver or both.

6:00 PM Finish dinner (Jett helps when possible, or more like when I'm in a particularly patient mood!), eat dinner, clean up after dinner. I pick out what frozen foods I need to thaw overnight for the next day. Afterwards, Jett helps clean up his toys and books.

7:15 PM This would be bath time. Right now, Oliver, Jett and I take a bath together (I'm in a swimsuit) because Oliver can't sit up yet and Jett is just now going through separation anxiety and won't bathe on his own. Or Daddy and Jett will shower together. Or I will get to shower alone. If Jett takes a bath alone, I play an audio book like Tales of Peter Rabbit or, his favorite, Poems every Child Should Know. Then we move downstairs. This is when Jett helps me with the laundry. He loves to sort and put his clothes away, including folding.

8:00 PM Oliver has floor time and Jett has free time or watches an educational show (like The Cat in the Hat knows a Lot about That, Daniel Tiger's Neighborhood, Sid the Science Kid, Peg + Cat, Little Einsteins, Dora or Diego etc.) TV time this late is not ideal, but... Sometimes Jett and I play a game. I go on the internet.

8:30 PM I do the more calming MNRI/ND stuff with either child. Sometimes Daddy does one while I do the other.

9:00 PM Jett's on the potty. I give him his night time supplements. We take turns brushing his teeth. I switch over the laundry from washer to dryer to laundry basket, etc. I put essential oils on both boys.

9:30 PM Everyone's in the bed. Daddy verbally tells one story (to increase auditory processing) with lights out.
...(This is when I try to sneak out of bed and go online.)

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