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.

Sources

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

Related Posts

Cerebral Folate Deficiency and Down Syndrome
Bacopa in the DS population

Why L-carnosine for the T21 population?

Longvida Curcumin and DS

Why Supplement and Monitor Zinc?

The Importance of Magnesium for those with DS

Treating Apraxia in Children with Down Syndrome

 

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. 

Cleaning

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!"

Cooking

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.)
Potty
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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Benefits and Methods of Massaging Your Baby
Keeping Nasal Passages Clear & Mouths Closed
Tummy Time
Getting Your Baby to Communicate
Books to Read to Your Baby
Deep Pressure Tactile Therapy
Low Muscle Tone: What to Do
Improve Your Child's Vision
Games for Baby: Grasping Skills
Teaching Your Baby to Crawl
Crawling: More Important than Sitting or Standing  

Up Up and Away Blog about Monkey Bars
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My Strategy for Good Behavior
Teach Your Baby Math 
Teaching Your Young Child Math
Handwriting Resources    
Walking and Children with Down Syndrome

Books to Read to Your Baby 

My TV/Video Strategy
Jett's Supplement List

What is the Anat Baniel Method and How does it work with Neurodevelopmental Therapy?

I used Neurodevelopomental therapy with Jett and have gotten great results. (See my Therapy page for details.) So, when I had Jett's baby brother, Oliver, who suffered a brain injury shortly after birth, I naturally went to ND. Well... because of Oliver's PSTD (Post Traumatic Stress Disorder) and because of his spasticity (muscle ridgeness), I couldn't really manipulate him as needed for some aspects of his ND program.  (It made him tighter and angrier.) Instead, I had to look to the ABM and MNRI to get him calm enough and loose enough to continue with ND.

I haven't yet tried ABM or MNRI for Jett, but am interested in exploring the benefits of ABM for our children with Down syndrome. That brings me to Rashmi Sundareswara, a lovely mom with a child with Down syndrome who uses both ABM and ND when working with her adorable and smart, Teyjas. She has graciously taken the time to write this beautiful piece for us....


You can see a World in a Grain of Sand
And a Heaven in a Wild Flower
Hold Infinity in the palm of your hand
And Eternity in an hour

    -William Blake


Have you ever experienced wonder in the midst of a mundane or an unpleasant experience?  If so, then it’s probably because you stopped to pay very close attention, even if just for a few seconds, to the beauty of it all – the process of unfolding, of discovery.

That “attention” is the one of the nine essentials of the “Anat Baniel Method” (ABM) [Baniel, 2012].  When combined with the other 8 essentials, it can be very powerful in transforming our movement, our thinking and our lives, wherever we are at.  The power of the ABM philosophy (as well as mindfulness in parenting in general [Zinn, 1997]) has been vital for our family.  It gives us a way to see our kids for who they are and not through our veils of fear and anxiety.  Science is now validating that ancient practices of mindfulness meditation can bring about beneficial effects on attention and emotion regulation, both of which are important for cognition[Kilpatrick, 2011, Kang 2013, Wells, 2013, Zeidan, 2010].  In addition, studies show that it can delay the progression of Alzheimer's, probably due to its influence on the brain's attentional and emotional networks.

The brain longs to find patterns, make sense and “create order from the chaos” [Baniel, 2012] it sees around it.   Our brains are endowed with billions of neurons and trillions of connections for the purpose of interpreting stimuli from our sense organs.  What we make sense of depends on what we bring our attention to.  During an infant’s first couple of months, there is a lot of differentiation in the brain – straight lines vs curves, mother’s voice versus father’s voice, mother’s smell versus dad’s, straightening out a knee versus bending, etc.  In all this, a baby is actively moving and sensing with attention (Essential No. 1) and often doing so slowly (Essential No. 2) to get new input for feeding its hungry brain’s need to differentiate.  The brain is craving “variation” (Essential No. 3) and hence the little scientist is motivated to gather input by experimenting with different ways of bending that knee or moving the pelvis.   As the baby grows, the differentiation becomes more subtle (Essential No. 4) for example, grabbing the rattle ever so gently versus attempting to grab it with force.  Imagining (Essential No. 8) herself being picked up when her mother comes near, a baby can replicate the sensation by activating the strong muscles in her pelvis.  This skill, with enough practice, turns into another skill of rolling over – something a baby practices over and over because she is so enthusiastic about it (Essential No. 5).  Throughout the child’s life, learning is taking place as long as the child is motivated and aware (Essential No. 9), which keeps the child’s  “learning switch” on (Essential No. 7).   Freeing ourselves from rigidity and having flexible goals (Essential No. 6) for our children gives them the freedom to experiment with their movement and their thinking and can help them become curious, independent, motivated, gritty and happy individuals. 

These nine essentials, brilliantly described by Anat, are what the “typical” brain does naturally.  When a child has special needs, one or more of these essentials is not functioning well.  What the Anat Baniel Method (ABM) and concepts in the book, Kids Beyond Limits (KBL) [Baniel, 2012] aim to do is bring back the missing essential(s) into the movement or thought pattern that is compromised so that learning can be improved. 

The ABM method imparts a deep respect for the “process” of development and discovery by the child rather than milestones in and of themselves.  By focusing on the process, we as parents are present to the wonder of our child’s current abilities rather than what “should” be.  When a learning process unfolds naturally, it creates a rich web of connections in the brain that are intentionally redundant.  Redundancy makes sure that the brain learns many ways of doing the same thing.  Imagine a spider web that is richly woven.  This rich web makes sure that there are many ways to get to the same spot.  Redundancy is everywhere in nature – from the blood vessels in our brain to the rich network of veins on a leaf.   When something gets broken, redundant networks make sure that the job can still get done.  They provide resistance to damage and allow space for creativity.

Neurodevelopmental programs provide activities that are geared to help the child’s developmental process as well and/or to address sensory needs (in addition to a whole host of other programs like reading, math, etc).  Many ND programs have a list of activities to be done with a certain frequency, intensity and duration.  In several activities (especially those for younger children), the goal is to provide input to the child’s brain by the parent since the child’s muscle tone or sensation/perception system is not allowing them to generate the input for themselves.  We do NACD with our son, which also wants the “process” to unfold by itself – by helping to develop areas such as muscle tone, oral awareness or auditory processing just to name a few.  They have techniques that go beyond the original Doman-Delacato method that they are based on and are also continuously evolving in their quest to help children achieve their fullest potential.

There are many who feel that neurodevelopmental (ND) programs are at odds with various aspects of the nine essentials of the ABM method.  So can the two be reconciled?  I believe so and I hope this blog entry can help you find ways to add an ABM flavor to whatever ND program you might follow.  I would also highly recommend reading Anat’s book, Kids Beyond Limits for a thorough explanation of the nine essentials and taking classes with an ABM practitioner.  This short blog opinion is in no way doing justice to the rich information that is contained in the book.  In addition to going into detail about each Essential, the book contains lots of scientific studies validating the nine Essentials.  I am extremely grateful for Anat and her work, as well as her practitioners, Marcy Lindheimer and Brendan Elms, who have all helped my child (and myself) and thousands of other children.  My heart was palpitating with excitement when I first read her book – every sentence is exactly in line with my background and interest in mindfulness.  I was so excited that there was someone out there who validated the importance of mindfulness for raising a child with special needs.

For me, doing the suggested activities in our ND program while keeping the ABM principles in mind required a shift in my thinking.  I had to be creative and attentive, rather than do them on automatic pilot .  Even though I may only get in 30%-40% of a day’s frequency (hard enough for a working mom who also wants her son to primarily play after he returns from his wonderfully stimulating preschool), what is important to me is to have done it mindfully and with my son’s attention.  Sometimes, the stress and the anxiety of not getting through a program can deter us from doing it with mindfulness.  The beauty and rich possibility of the present moment with our child will dissipate very quickly if we let concerns of the future, our anxiety or our schedules take over.  And most unfortunately, this is what our children too will learn – our anxiety and stress.  I am guilty of this every day, but I am getting better (it’s a process, right?!).  However, I want to parent for the long-term – I want to have fun with my child during these crucial, formative years but do so in a productive manner. 

For the remainder of this discussion, I will use examples of four activities that are quite common to most ND programs for kids with Down syndrome: deep pressure on the limbs, the sit-stand sequence, oral stimulation and auditory processing.   For each one, I’ll describe how I do it while keeping the nine Essentials in mind.

Deep-pressure/sit-stand

This activity in an ND program is suggested to increase the sensation in the low-muscle tone child.  It comes with a certain daily frequency, intensity and duration to normalize the tone.   I wondered when my son would get bored with it and not care for it anymore.  I mean, honestly, if I was deep-pressured or tickled 6 times a day for weeks on end, would I still be tickled?  Wouldn’t I become desensitized to it?  But I have normal muscle tone and my son does not, so I do not know if he will have the same reaction.   However, I do know how I can make sure that my child is paying attention to it.  So, I use the Essentials: “awareness” and “movement with attention” not just for my son, but for myself as I interact with him.  When I apply deep pressure, I think of it as way of discovering him, as if the first time.  “Hmmm…. This is what his toes feel like – his little toe is just as cute as when he was born! …. Interesting, I had not noticed before how his thigh skin is so much softer than the skin on his calf.”    My brain was developing subtleties and hence becoming more differentiated too because I was not on “automatic pilot”!  He too, seemed to be enjoying the activity more because I showed him so much more attention.  That is one of the best gifts we can give our children – our full attention.  But wait!  He soon got tired of me doing that, so then I had to think of other ways of holding his and my own attention.  I started drawing alphabets on his legs and he was so excited to guess what they were!   Some other suggestions from the book are to pause when you are about to start a movement with him and to support and exaggerate the movement.   For the sit-stand portion of the activity (this is where the one or more parents help the child pull-up to stand from a sitting position) I also tried to exaggerate the movement of pulling him up to stand.  I asked him to feel how strong his legs were – and he used to laugh.  I changed up the way I said “strong” to a deep, deep tone.  I varied what he would be sitting on when he was pulled up to stand.  Sometimes, the platform he was sitting on was only an inch high; sometimes, it was 5 inches high.    I would sometimes give him only one arm to hold onto, sometimes two.

I would vary the spacing between his left and right leg, putting one or both feed on the platform, sometimes even let him get close to falling … you get the idea.  Variation.  It’s important – the brain thrives on it.  My brain thrives on it!  I needed to think of ways to change it up to prevent myself from going on auto-pilot.  That is something I want to avoid for myself and my son because that is end of useful information for the brain.  We want the information to be as novel as possible because that means new synaptic connections in the brain.  The end result is hopefully multiple ways of completing a task from a host of starting points. When you see your child successfully learn to use a shape-sorter, for instance, you will probably have noticed that at first the child was experimenting with all sorts of incorrect orientations of the shape through the sorter until the right one clicked.  Having learned this way time and time again probably meant that he could fit the piece correctly no matter what orientation it started in his hand.  That is the idea here with “variation” and can apply to almost any skill your child learns.  I’ll end this section by saying that it had come to a point where my son would beg me to do “sit-stand” with him!

Patterning? 

As far as the activity of patterning goes, I’ve wondered why it works for some kids and some do not.  I think the key is “attention.”  Here are my thoughts:  ABM says that stimulation, for example, given by the parents, by moving the child’s limbs for them – patterning – is not the same as information to the brain.   What does this mean?  This means that as long as the child’s brain is not paying attention to the particular sensation, then it’s not information to the brain – it is just stimulation.  Attention to anything – even for us adults – is what transforms outside stimulation into usable information by the brain.  How many times have you walked in your neighborhood and discovered some aspect of a house (or an entire house!) that’s always been there and you have looked at a thousand times before?  We need to have our children feel, be aware, interested and excited about the activity – then the attention to the movement happens – and the connections form.    Without it, one can pattern, pattern, pattern and not get the desired results – what one might get instead is a lot of frustration for both parent and child.  You want to, as much as possible, as Anat says, to “invite” the movement, rather than “impose” it.


Oral Stimulation

Hard one.   Most people reading this might be familiar with the ‘nuk’ brush.  The bumpy brush that we are supposed to rub and massage the insides of the mouth with.  Again, same idea here: if you want the child to feel it as much as possible, we have to make them 1) look forward to doing it  and 2) feel the sensations that we intend for them by having them pay attention to it.  To this end, I sometimes have him feel the bumps on his finger and then I ask him, “hmm… I wonder what this would feel like inside your mouth?”  Once when I said that, he grabbed the brush excitedly from me and put it in his mouth!  Sometimes, I draw letters on his tongue and ask him to guess what they are or I ask him what alphabet he would like me to draw.   I do the same for around his cheeks.  If your child is not familiar with the alphabet yet, you can try drawing a “ball” or a “triangle” or anything simple that your child is familiar with.    I have also asked him if the nuk brush feels differently on his fingers than it does on his tongue, and how so.  The possibilities are endless.  I will admit that it can be exhausting constantly think up new ways of having him feel the brush in his mouth, so I sometimes just use it on his body for a change.


Auditory Processing

There are many suggested ways of doing auditory processing.  I will take one example to expound upon: digit span.  This activity requires the caregiver/teacher to say out loud to the child a certain amount of digits, a second apart, and the child repeats it back in the correct sequence.   The number of digits usually grows linearly with age up to a point.   My son counts in four different languages (English, French, Spanish and my native language of Kannada – a language of one of the states in the Southern India).   We do digit span in different languages.   He was first used to doing it in English only, so when we introduced the different languages, it threw him off a little.   The result was that he paid more attention and got back on track.  He still prefers to do the activity in English, but the other languages provide enough variation to keep it interesting and difficult.


And in the end...

Doing our ND program is not easy.   It requires enormous discipline to come back and do the same set of activities day in and out.   The only way one can come back and do it over and over again is if there is the strong belief that it will work.  This belief, for my husband and myself, wavers all the time, even though we have seen good results for our son and have a huge amount of respect for NACD.  Let me explain why.  The first issue is that of time – both my husband and I work full-time.  The second is our own parenting legacies:  My husband and I were raised in two different continents.  We were both just left to play, however we wished to by our parents, when we were under their care.  Neither of our parents are technical-minded, however now my husband has a Masters in Mathematics (almost a doctorate) and I have a doctorate in Computer Science (my focus incidentally is Artificial Intelligence).  Granted we achieved this because of the opportunities that environment provided for us and hard work – but it was not in the way of our parents helping us when were young other than allowing us to be whatever we wanted to be.  I understand that our children need more help than typical kids, but just how much help is a question I constantly struggle with… I want him to learn to read by himself because he wants to do so; because he sees how excited I am to read with him, not necessarily through flashcards.  You see my dilemma.  I do want to work hard with my son, but what I really want to teach him, along with increasing his muscle tone, sensory issues, is “grit” because that studies show that is more powerful than IQ [Tough, 2012] in navigating our world.  (Quick digression here, I just want to mention even though reading does change the brain in desirable ways, specifically sharpening visual attention skills, strengthening split-second micro movements of eye muscles, it also makes one less adept at other visual feats that people with dyslexia are good at – spotting visual anomalies and a propensity for visual causal reasoning [Schneps, 2014], skills that serve scientists well).

Teyjas independently finishing a 24-piece jigsaw puzzle.

Doing our ND program with the nine Essentials in mind makes it a bit more exciting and hopefully more effective.  However it also requires a huge amount of discipline – discipline to be completely aware of my intention as I work or play with my son (Is it kind or anxious or greedy?), discipline to not “impose” desired movement on him but to gently “invite” it from him, and discipline to not let feelings of discouragement come through in my interactions with him.  It is a daily practice achieved through frequently becoming aware of the state of our body, breath and mind.  This skill of focused contemplation gets better with time – not just with frequency, intensity, duration, (ha ha – sorry, couldn’t help it!), but with a generous amount of self-compassion. Parenting any child is hard enough, but parenting a child who has some extra needs is phenomenally hard.   It is easy to judge ourselves all day long.  If we are compassionate to ourselves first, then it becomes easier to transfer it to the other people in our lives – including and especially our children who are doing marvelously despite the issues they face.

The old adage, “It’s the journey, not the destination” (or the process, not the milestone!) really fits my journey on this path of parenting my son.  My son, Teyjas, just turned four.   He continues to surprise me everyday – not just with his cognition and speech, but his “grit”, his motivation and his humor.  I want my son to glean from my husband’s and my own experiences – successes and failures – in parenting him.  I want him to know that just like there are innumerable questions/methods on how to help our kids – there is always an answer lurking around – and its an exciting, gritty, grateful, journey to sort through it all – and best of all – to see each new moment as ripe with potential.

Thank you Andi for extending to me the opportunity to voice my thoughts on your well-deserved, extremely inspiring blog for parents of children with Down syndrome.

Teyjas loves coconuts!

May all our children break through stereotypes of the past.

May we all gracefully walk the fine line of high expectations and acceptance.

May we all be present to the enormous love, compassion and possibility in every moment.

Rashmi Sundareswara and her (incredible) husband Sam Peterson are parents to Teyjas, recently turned 4 year old (with Down syndrome), and 6-month old Maya.  We all live in sunny Santa Monica, CA.











*Anat's take on “intensity”: The “intensity” issue. Amos Tversky and Daniel Kahaneman’s research demonstrated that under uncertainty conditions people will not diverge more than 30% off their baseline/start point. ND is based on the DD (Doman-Delacato) approach that believed in lots of hours daily of exercising the desired function.
That can easily lead to greater grooving in of existing limitations, or portions there of.
Current research shows the incredible instantaneous and HUGE changes that can occur within a few minutes if the brain gets the info it needs and that continued “practice” right away actually can inhibit the changes. So if ND can go beyond the 30% change from the baseline, I would redefine intensity to mean – CHANGE! And when change occurred it is time to stop for a while – preferable at least a day and come back to it gently and minimally later. And if there is no change after a few minutes then – STOP – because its not working. Do something else.

References

Baniel, Anat, (2012), Kids Beyond Limits, New York, NY. Penguin Group.

Decharms RC, Merzenich M., (1996). Neural Representations, Experience and Change.  The Mind-Brain Continuum, MIT Press.

Tough, P.  (2012) How Children Succeed. Grit, Curiosity and the Hidden Power of Character, New York, NY, Houghton Mifflin Hartcourt, 2012

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