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. 

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
Put on his "eating clothes" (so that supplements won't stain, etc.)
I get dressed and eat my square of chocolate.
Jett has free time while I attend to Oliver's diaper and 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 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. 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!)

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).

by 10:30 AM breakfast is done. 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! or Barney Dance or the Wiggles (only ones with Closed Captions for Jett) or Rock and Learn's Dance with Animals. 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.

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.
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. Then we move downstairs. This is when Jett helps me with the laundry. He loves to sort and put his clothes away.
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 or Daniel Tiger's Neighborhood or Sid the Science Kid, 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.
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 some more.)



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Tuesday, October 21, 2014

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

Zinn, Jon-Kabat, (1997) Everyday Blessings: The Inner work of Mindful Parenting, New York, NY, Hyperion.

Schneps, Matthew  (2014) The Advantages of Dyslexia. Scientific American. August 19, 2014.  http://www.scientificamerican.com/article/the-advantages-of-dyslexia/

Kilpatrick LA, Suyenobu BY, Smith SR, Bueller JA, Goodman T, Creswell JD, Tillisch K, Mayer EA, Naliboff BD (2011) Impact of Mindfulness-Based Stress Reduction training on intrinsic brain connectivity, NeuroImage. 56(1):290-8. doi: 10.1016/j.neuroimage.2011.02.034. Epub 2011 Feb 18.
http://www.ncbi.nlm.nih.gov/pubmed/21334442

Kang DH, Jo HJ, Jung WH, Kim SH, Jung YH, Choi CH, Lee US, An SC, Jang JH, Kwon JS. (2013) The effect of meditation on brain structure: cortical thickness mapping and diffusion tensor imaging. Soc Cogn Affect Neurosci. 2013 Jan;8(1):27-33. doi: 10.1093/scan/nss056. Epub 2012 May 7.
http://www.ncbi.nlm.nih.gov/pubmed/22569185

Rebecca Erwin Wells, Gloria Y. Yeh, Catherine E. Kerr, Jennifer Wolkin, Roger B. Davis, Ying Tan, Rosa Spaeth, Robert B. Wall, Jacquelyn Walsh, Ted J. Kaptchuk, Daniel Press, Russell S. Phillips, Jian Kong. (2013). Meditation's impact on default mode network and hippocampus in mild cognitive impairment: A pilot study.  Neuroscience Letters, 2013; 556: 15 DOI:10.1016/j.neulet.2013.10.001

Zeidan F,  Susan K. Johnson, Bruce J. Diamond,, Zhanna David, Paula Goolkasian, (2010) Mindfulness Meditation Improves Cognition: Evidence of Brief Mental Training.  Consciousness and Cognition, Volume 19, Issue 2, June 2010, Pages 597–605
http://www.sciencedirect.com/science/article/pii/S1053810010000681

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Tuesday, April 1, 2014

How Two Minutes Can Make A Difference

Down Syndrome Day to Day blog readers often ask me what they can do for ME...
Well, this is your chance!

Just sign this petition for better health care for children and adults with Down syndrome! Do share it with friends and family.

What good will this do?

With enough signatures to show support, we can bring our story to big media and physician associations. This is the only way we can show the world the support that's out there for children with DS! Think of all of the kids who will be helped. The new generation of DS treatment is here and NOW!

Petition Summary:

We simply ask doctors to read the research that already exists to help understand the underlying causes for the health issues commonly experienced by children with Down syndrome and to recognize the possibility that the health of a child with Down syndrome can be greatly impacted by diet, lifestyle, supplements and proper thyroid treatment.


Brought to you by:

Petitioning Down Syndrome Specialty Clinics

This petition will be delivered to:
Down Syndrome Specialty Clinics
Medical Geneticists
Endocrinologists

Recognize the value of biomedical treatment of children and adults with Down syndrome

The completion of the Human Genome project in 2003 opened up research into the underlying cause of many genetic conditions, including Down syndrome. The over-expression of genes for the enzymes SOD, CBS and DRYK1A are all linked to the phenotype of Down syndrome. There has been a recent explosion of research in the area of understanding the cognitive delays that often accompany Down syndrome. A large collection of research occurred before this recent explosion to uncover vitamin and amino acid deficiencies, defects in the methylation cycle and causes of oxidative stress, to name a few. The underlying causes of the Down syndrome phenotype are recognized by many well-known and respected researchers, but not by the very doctors that see these patients on a daily basis.

Some parents of children with Down syndrome choose to give their children supplements like a multivitamin, fish oil and green tea extract, among others. Many parents who give their children supplements do so, not with the goal of improved cognition, but to help their children be healthier.

There is a growing online community of parents of children with Down syndrome who have expressed their frustration with doctors who dismiss their concerns for their child's symptoms. Many doctors excuse these concerns as "just Down syndrome". These parents seek help from one another to better understand their child's own health when doctors can't. There are only a handful of doctors who have the knowledge and training to help guide these parents through the vast amount of information available on supplements that have been researched and shown to be helpful.

In addition, the symptoms of Down syndrome are identical to that of congenital hypothyroidism. The type of hypothyroidism experienced by many children and adults with Down syndrome is not detected by a TSH or T4 lab test. Cellular hypothyroidism is the term that has been used to describe what people with Down syndrome experience. The symptoms of this type of hypothyroidism are the same as hypothyroidism caused by a defect in the thyroid gland itself. The conversion of T4 to the active thyroid hormone T3 is imperative to the function of all cells. A second version of T3 exists that is called reverse T3. It is a stereoisomer, a mirror image, of active T3 and is inactive within the cell.

Physiologic processes that contribute to an elevated reverse T3 are low iron, low or high cortisol levels, inflammation and oxidative stress. People with Down syndrome experience all of these processes. Active thyroid hormone is essential for the functioning of literally every cell of the body. Without it people experience slow gut motility, slow growth, delayed cognition and many other symptoms that are so common to people with Down syndrome.

We simply ask that doctors start reading the large body of research that exists to help understand the underlying causes for the health issues commonly experienced by children with Down syndrome and open up to the possibility that the health of a child with Down syndrome can be greatly impacted by diet, lifestyle, supplements and proper thyroid treatment.

----
To:
Down Syndrome Specialty Clinics
Medical Geneticists
Endocrinologists

Recognize the value of biomedical treatment of children and adults with Down syndrome

Sincerely,
[Your name]
-----

If you need more information about anything mentioned in this petition, please feel free to ask!

Friday, March 21, 2014

Celebrate World Down Syndrome Day!



Celebrate World Down Syndrome Day by signing this petition for better health care for children and adults with Down syndrome. 

Down Syndrome OPTIONs is educating parents NOW to improve the health and development of our loved ones. Come join us and make a difference!



Wednesday, March 19, 2014

Down Syndrome Conference May 2014


 The Down Syndrome Track 
at the 
2014 AutismOne Conference!

May 21-22, 2014 

at the 
Intercontinental Hotel O'Hare Chicago 
in Rosemeont IL

Register now 
to experience the event of the year!

The conference (May 21-25) is $99, with two full days of Down Syndrome specific presentations (May 21-22) and five days of pertinent, helpful topics from the autism community like fermentation, homeopathy, healthy cooking, boosting immunity, supporting gut health and much, much more. That's a small price to pay for access to such great information!

In addition to the life-changing information, you will meet up with parents, researchers and doctors in person. It will be an amazing experience you won't want to miss!

I'm excited to meet you at the Down Syndrome OPTIONs booth.

Childcare is available.

Speaker Sneak Peek:

Dr. Norman Schwartz

Jill Rabin, MS, CCC-SLP

Dr. Russell Jaffe

Jane Winans, Mom

Dr. Richard Freely

Lydia Winans, elementary school student

Dr. Erica Peirson

Leslie Boswell, Mom

Dr. Jared Skowron

Allison Wimmer, neurodevelopmentalist

Dr. Richard Deth

Dr. P.J. Baggot

Andi Durkin, Mom

Panel of Speakers


Topic Sneak Peek:


Optimizing Pregnancy and Early Infancy

Feeding for Speech Support

Available tests – treatment staging

Sulfur/CBS Upregulation

Craniosacral Therapy

Neurodevelopment - Speech

Navigating the Journey

Communicating with Your Doctor

Pediatric Hypothyroidism in Down Syndrome and Autism

Trehalose 

Methylation and Epigenetic Regulation in Down Syndrome



Click the links to check out previous year's presentations:



Glutamate, the major excitatory neurotransmitter in the brain, is both essential and highly toxic. Patients with Down Syndrome experience a higher rate of oxidative stress that damages neurons, potentially exposing them to the harmful effects of excess glutamate released from damaged neurons. Mediating the effects of excess glutamate is essential to optimizing the health of neurons.

Erica Peirson, ND


Dr. Schwartz will review the history and scientific research documenting the benefit of nutrient and thyroid support in Down Syndrome. He will explain low risk, high gain interventions to: optimize nutrition and supplementation; monitor and support thyroid; choose first line, functional lab tests; avoid environmental toxins; and support detoxification. These are the building blocks needed to form a solid foundation upon which your child may flourish.

Norm Schwartz, MD


Can nutritional supplements benefit individuals with Down syndrome? Kent MacLeod will review the history of supplementation in Down syndrome, and discuss recent advances in nutritional science and how those innovations can be used to positively impact the biochemistry of Down syndrome.

Kent MacLeod


With proper intervention—physical, nutritional, neurodevelopmental, medicinal and environmental—your child's future can be full of opportunities instead of obstacles.
I've devised a proactive plan of action while addressing my three year old child's root causes and symptoms of Down syndrome. This is an exciting journey and I'm happy to share with you what I have learned.

Andi Durkin
GAPS™ - Gut And Psychology/Physiology Syndrome

GAPS™ (Gut And Psychology/Physiology Syndrome) shows the underlying cause of some of the symptoms that plague special needs children, such as digestive issues, malabsorption, food sensitivities and toxicity. This session will explain how the state of the gut directly affects the health of the body and how the GAPS™ nutritional protocol can heal or greatly improve many of these symptoms.

Kristin Gustafson

Parents deal with gut issues on a daily basis. Many parents of children with Down's Syndrome deal with the same GI problems experienced by those with autism. Digestive enzymes from non-animal sources can often improve many problems associated with food intolerance and malabsorption. This lecture will help parents understand what enzymes are and how they work in digestive health
Devin Houston, PhD


This talk will educate participants on current and optimal dietary options to ensure better overall health for their child with Down syndrome. The impact of diet and different methods on how to transition children with Down syndrome to solid foods will be discussed. Oral motor and feeding treatment methods will be explained as well as the importance of using these methods in order to develop a strong foundation for feeding skills and the development of speech.

Jill Rabin M.S. CCC-SLP/L IBCLC

Let's Learn - Reading Math and Fun Stuff

Learn and discuss fun ways to help your child read, do math, socialize, and play. Explore simple, logical strategies and activities which will increase overall retention of the information being presented. Sometimes the best teaching strategies are the most obvious.

Alison Wimmer

Balance tips for a busy household & Lydia presents her life

How do I balance it all? This talk gives helpful tips for maintaining balance while juggling therapies, doctor appointments, food restrictions, other children, marriage and self. What are the possibilities for my child? Lydia is in 4th grade and will share a slice of her life with you.

Jane Winans, MA and Lydia Winans

Comparative effectiveness research depends upon a group of objective, independent predictive biomarkers. A current state of the art in regard to evidence based predictive biomarkers will be presented and discussed.

Russell Jaffe, MD, PhD, CCN

Down Syndrome: Evidence of a Susceptible Subgroup for Vaccine Injury

This talk will present biologically based evidence that children with Down syndrome are uniquely susceptible to injury from vaccines. With an 18% ASD comorbidity, we will explore the mechanisms that may connect vaccines to autism in this highly vulnerable population. The relationship of vaccines to Alzheimer’s will also be discussed.

Laurette Janak

Health Risks for Down Syndrome Moms and What to Do About It

Layman’s terms will be used to explain the folate cycle and its implication to the health risks for a mother with a Down syndrome child. Topics to be discussed include: depression, heart disease, Alzheimer’s, cancer and risk for having a child with autism. Strategies to minimize these risks will be presented.

Laurette Janak

Boost Cognition Potential

Dr. Anju Usman will explain biomedical techniques for optimizing a healthy gut-brain connection including uncovering roadblocks to function as well as introducing nutrients for brain repair and neurogenesis.
What is epigenetic regulation of gene expression, and why is it particularly important in brain development? This presentation will provide a fundamental understanding of epigenetics, focusing on the specific implications of chromosome 21 trisomy.
Richard Deth, PhD