Today is Day 23 of 31 for 21.

 
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A friend recently sent me a link to a blogpost in which someone shared the details of the diet they fed their child with special needs, saying that it reminded her of me.  It was quite similar to our approach to food with Yirmiyahu, so I thought I’d share what we do in the hopes it will be helpful to other parents.  I’ve written about some of these things in the past but others are new so this is the latest.

As a society we tend to disconnect between what we put in our mouths and how we feel, but not only does what we eat affect the functioning of our physical body, it affects the functioning of our minds as well.

I’ll start with his current supplements:

Fermented cod liver oil – this is great for the brain and we give him about a 1/2 teaspoon a day in his bottle, split into two different bottles so the taste won’t be too strong.  This contains vitamin D, vitamin A, DHA and EPA.  I used to give this with butter oil but when he was hospitalized at eight months, he stopped taking his supplements for that period.  When he got home, he was no longer used to the taste of his formula with supplements and rejected them all.  I had to very, very slowly reintroduce them and build up his taste tolerance.  Butter oil just never got added back in.

Probiotics – these build the digestive system and are very important to gut health, which is at the root of all health.  He started getting these when he was four days old – I added it to the milk I expressed when he was still in the NICU.  He’s been getting 9 billion cfu daily but now his wonderfully high quality probiotics have clumped together into a solid chunk thanks to the moisture in the fridge over time.  I have to find a new probiotic to replace what we’ve been using until now.

Nutrivene-D- this is a special multi-vitamin for individuals with T21, and Yirmiyahu gets 1/2 teaspoon daily, split between two bottles.  He’s been getting this since he was two months old.

Folinic acid – this is a more bioavailable form of folic acid and I give therapeutic (ie high) doses of this combined with 5MTHF based on research studies regarding treatment of cerebral folate deficiency, which I believe is the underlying issue responsible for Yirmiyahu’s slow growth rate.  I bought the 5MTHF in capsule form so it’s easy to just open and add to his bottle, but it took me a couple weeks after starting with the 5MTHF to give the folinic acid since they’re tablets and it took me that long to experiment with crushing them.  It turned out it was pretty easy to do and there’s not much of a taste to it.

Colostrum – I give this daily to build his immune system.  In the bottle.  Naturally.  🙂  The best thing about his formula, other than being dairy-free, is it’s a great conduit for supplements!

Digestive enzymes – I’m currently adding in some digestive enzymes that we got in a free sample pack once a day to his bottle and hope to add this to my next vitamin order so I can make it something he gets daily.  I think his body would benefit from more help in utilizing the nutrients in his food.

Zinc – I give this daily via a spray that also has elderberry and echinacea.  He willingly opens his mouth and lets me spray it in – one squirt a day.

Siverbiotics – a teaspoon daily as a natural antibiotic.  This is unfortunately almost finished and since I’m not yet able to make another order, I’m planning to give him olive leaf tincture once this is gone.

Evening primrose oil – when I remember I rub some of this on his skin.  I started this just last week and haven’t yet gotten into a groove with giving it so it’s still irregular.

Homeopathics – I have a really hard time with homeopathics since they aren’t supposed to be given with food nor right after or right before food.  Without being able to tie this to something regular in my schedule, it’s hard for me to remember to give remedies that are supposed to be given several times a day.  So it’s kind of hit or miss.  I most often remember to give Bioplasma cell salts.  I have a couple of homeopathic remedies that are good for when he’s under the weather; R49 Junior is the one I used most last winter and it’s going to be pulled out again this winter as needed.  I have two others in this series but like I said, I’m homeopathically challenged.

Food – this has been challenging for me, since for so many months Yirmiyahu showed minimal interest in food despite my efforts.  Then he got interested but wasn’t eating what I gave him.  I worried a lot about this and it’s been a huge relief to me as he finally is eating solids consistently a few times a day, and all I have to do is prepare the food and spoon it in!

Early on I made the decision to avoid were gluten and casein, because both are difficult to digest and have other issues involved with them.  I did give Yirmiyahu dairy formula when I began supplementing and continued until he was eight months – it took me four months to convince the doctors that he was reacting to the dairy and get a prescription for the specialty non-dairy formula that we currently use.  I’m really glad we did this, especially after I did the reading on cerebral folate deficiency – a milk-free diet combined with supplementation is the treatment.  Even though I wasn’t able to actively treat it until now, at least he didn’t have dairy formula for these last seven months to make things worse.

I’m not yet giving any grains, since they’re so difficult to digest.  When we do, I’ll start with kasha (buckwheat – we eat a lot of this) and quinoa, which aren’t technically grains but they look like they are so I think of them in the same category.

Fruits and vegetables – I recently saw the suggestion to give six vegetables daily and started making his vegetable mixes with more veggies (used to use three or less).  My first mixture was onions, carrots, kohlrabi, apples and zucchini can’t remember the sixth thing but there was something else) – he loved it!  The blends aren’t based on any recipes, just whatever six things I have in the house that seem to go together.  I don’t consider potatoes a vegetable when making this.   I make a potful, then freeze what Yimiyahu won’t eat within a couple of days in containers and defrost them as needed.  Sometimes I add extra virgin olive oil to this mix after it’s cooked.

I also give him small bits of raw fruits like apple, guava, banana,  mango and avocado.

Coconut oil – I try to give him some coconut oil every day.  Since until recently he wasn’t eating solids, I couldn’t mix it into his food.  I added it to his bottles (when they didn’t have cod liver oil added) but recently tried giving it to him on a spoon when it was slightly solidified and he liked this.  Nice to have one less thing to add to the bottle!

Proteins – he eats chicken, turkey, eggs and lentils (I made him some salmon a couple of days ago but his older siblings found it and ate it first:)).  I usually don’t have to make something special for him; he has some of what we’re having.

I feel like I’m forgetting something but I can’t think what it could be, so I guess that’s it!

Avivah

Today is Day 17 of 31 for 21.

 
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Last week I did something really courageous, something I’m so proud of myself for.

I told Yirmiyahu’s new physical therapist that i won’t be coming more often than every six weeks.

Courage comes in all kinds of ways and while this might not seem like a very big deal, it wasn’t easy for me.  I’ve been questioning the value of traditional early intervention therapies for about a year now.  This has been a hard thing to do, since everyone ‘knows’ how good therapies are.  I’ve had to let go of wanting validation from outside sources for my choices and look to myself to act in integrity with what I really believe to be in Yirmiyahu’s best interest, despite the criticisms and hurtful assumptions that may be made about my commitment to him.   You have to pat your own back and sometimes that’s hard when you’re doing something different from everyone else and are worried you’re making a mistake that your child will pay for.

When I began feeling unsure about traditional therapies, it was just my feeling and I didn’t give much credence to that since I thought I must be wrong since therapy is good and therapists are all going to know more and do better than I could.  Then I read an incredibly powerful paradigm shifting book that deserves its own post, Disability is Natural that more than validated my feeling; it got me thinking deeply about disability and how our culture views it, and how do I want to participate in that culture.  This wasn’t something theoretical or exclusive to the philosophical realm.  I found that after therapy I always had an inadequate and negative feeling about myself as a mother and looked at Yirmiyahu’s development with anxiety,  They seemed to be looking for delays and if he wasn’t delayed, rather than say something positive about how well he was doing, the message was instead about how hard we should work so he wouldn’t become delayed.

As I read about the experience of adults with disabilities who spent years in therapy and the negative self-image that developed as a result of absorbing the unspoken message that there was something inherently wrong with them, I thought how difficult these messages are to combat.  The negative self-image it leaves a person with may be more disabling than the disability itself.  A person with a disability is living in a world where he’s surrounded by the meta message that he’s not enough as he is.  You’re only okay if you’re ‘normal’ (whatever normal means).  We read about how important it is to convey to our kids that we love them unconditionally, but when it comes to kids with disabilities all of a sudden acceptance goes out the window and fixing them takes priority.  The fine line between encouraging Yirmiyahu and accepting him as he is now can be a challenge to balance but I hope I’m getting the hang of it.

 I decided that I wanted to quit therapy but I had some fear around that.  Fear of being seen as a neglectful mother (I had way more than my share of that when Yirmiyahu was in the pediatric intensive care unit), fear of doing something different than everyone else, fear of burning my bridges.

I tried to quit but – surprise, surprise! – my ambivalence came through and I ended up making another appointment instead, after being told how important therapy is for him, with the implication that what kind of mother can’t find time in her schedule for something as critical to her child as this.

Last week I finally summoned my inner clarity and firmly told the therapist that if we couldn’t come every six weeks for a check-in visit, then we wouldn’t be coming at all.  I had asked about this option before and been told it was impossible.  But this time when she saw that I really wasn’t going to come again, she made an appointment for six more weeks.  She said she’ll see about when to schedule the next appointment after that.  I told her I’m not interested in discussing it at every visit; six weeks is what we want right now.  In the past I’ve allowed myself to get sucked into discussions that have no productive purpose since their goal isn’t to listen to me and understand my concerns but to get me to buy into their way of doing things without questioning them.  Yirmiyahu has an inner schedule like every child and with support he’s going to learn to do what is important for him to learn when he’s ready.  We can support him but we can’t make things happen.  He’s the one who will make it happen, not the professionals.  That trust in your child is where I see things very differently from the therapists and while it sounds like a small difference, it affects every aspect of how we see him and how we approach interventions.

When Yirmiyahu was younger, I advocated very hard for more services, which were then allotted to him.  At least verbally.  In reality that never happened.  I didn’t push it because by then I wasn’t sure that’s really what I wanted any more.  The reason I chose to continue with periodic therapy rather than quit altogether is that I’m not trying to do everything on my own; I value the experience of therapists and know that there are things I can learn from them.   I also wanted to leave the channels open in case we want services in the future.

Switching to a six week schedule gives me such a sense of freedom.  The summer break from therapy was wonderful – I was able to enjoy Yirmiyahu without constantly pulled back to an unproductive way of thinking about him and about myself.  It was also when he learned to crawl and to stand, all without official therapeutic interventions but with lots of support from us.  (The therapist was very surprised and impressed with how good his form was.)  During the first year, my feeling was, I’ll do whatever Yirmiyahu needs.  Imbalance is normal for many of us in the first year after the diagnosis.  But imbalance isn’t an ideal and you can’t live in that state forever. You have to find balance for the sake of every member of your family, and that means finding ways to live a normal life.  Weekly therapy stopped feeling like part of the solution and started feeling like part of our imbalance.

Not going to official therapy doesn’t mean that we won’t be doing anything to encourage Yirmiyahu’s development.  Of course we will.  It’s more an issue of looking for ways to provide him with a normal life while finding ways to integrate support naturally.  I have the books Gross Motor Skills for Children with Down Syndrome, Fine Motor Skills for Children with Down Syndrome (each of these books was written by therapists with extensive experience working with kids with T21 and are professional and detailed guides), Yoga for the Special Needs Child and a couple of books by Glenn Doman espousing a neurodevelopmental position- in addition to online reading these provide a pretty solid foundation of technical guidelines and alternative ideas to support him.

He’s a lucky baby to have siblings who play with him all the time – I think our kids really are the best therapists!  They involve him in their games, do fingerplays and sing songs with him, swing him on swings, play in the sand and go down slides at the park, and give him rides on his push car.  Today ds7 ran to get him from me so he could play with him in the ball pit at the park.  They put mattresses on the floor and put toys just out of his reach to encourage him to crawl.  They show him how to play with toys and give him lots of positive feedback.  Love is a positive motivator, and there’s no doubt that Yirmiyahu extends himself in order to interact with them more than he would for a therapist that he doesn’t have much of a relationship with.

And to be clear – I’m not against therapy; I’m open to increasing therapy visits in the future if I see that’s what will be most supportive of Yirmiyahu’s needs at that time.  But now it’s not and sometimes having the courage to support your child looks like this.

Avivah

Today is Day 10 of 31 for 21, a blogging effort to raise awareness of Trisomy 21.
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I feel like this has been a heavy week with my posting thanks to the accident, so today I thought I’d share something a little lighter to bring a smile to your face.

Here’s a two minute video starring our little bundle of sunshine during bath time when we first transferred him to this baby bath from our previous set up two months ago. Okay, so it takes me a while to get these technical things done, what can you do?

We don’t usually follow our kids around with a camera taking pictures or videos but Yirmiyahu was having so much fun that we wanted to capture it! Even though he got startled every time he splashed his face, he had a great time, and so did we watching him!

Bath time. You’ll see at the end that he pulls to stand twice and plops right back down- at that time he was just learning to stand up.

Avivah

It’s hard to believe that a year has gone by since I participated in the 31 for 21 2012 blogging effort to raise awareness of Trisomy 21, more commonly known as Down syndrome.  There are 31 days in October, and Trisomy 21 occurs when the 21st chromosome is triplicated – hence the name – and for this month bloggers across the blogosphere are joining in.  During this month I won’t be posting only about Trisomy 21, though there will probably be more posts on the topic than usual.  But I will be mentioning my participation at the beginning of each post.

My general perspective on parenting is that every child has his growth curve (physically and emotionally) and we need to have patience and trust the individual’s process.  Sometimes there are things you see in your child that cause you to worry because he doesn’t doesn’t seem to be getting it as quickly as most other kids his age.  This could be academic, behavioral, psychological – and you have to let go of your fear and shift your thinking to believe in him so that you can reflect that back to him.

That’s why one of my favorite children’s picture books is Leo the Late Bloomer.  Leo is a lion cub that can’t do anything right.  All his friends pass him in all areas of development, and while his father tries not to show how worried he is, he keeps seeing Leo failing in all the areas that his friends are succeeding in.  Reading, writing, speaking, drawing, eating.  Time passes and no improvements, until suddenly, one day Leo ‘blooms’ – he seemingly overnight acquired proficiency in all these areas.

I’ve often thought how true this is of child development, and how important a parent’s trust in a child is to the process. And yet I sometimes feel I’m mentally groping to find the right balance in this area when it comes to Yirmiyahu (now fifteen months).

There have been two developmental milestones that I’ve been concerned about in recent months: eating and crawling.  Yirmiyahu hardly eats any solids and that’s not for lack of effort on my part.  And though Yirmiyahu started to army crawl a tiny bit when he was thirteen months, he prefers to sit and actively resists being put down on his stomach.   My question for myself – how much to trust his internal timetable, and how much to push him?  It’s not one or the other, but sometimes doing too much on one side of the equation leads to too little on the other.

All of this wondering about these two concerns came to a quick conclusion recently.  Two weeks ago Yirmiyahu got his first two teeth which were rapidly followed by another three.  Five teeth in two weeks!  Sometime in this same period, Yirmiyahu’s eating suddenly dramatically changed.  For months he rarely ate more than a teaspoon of food a day no matter what I tried – suddenly he’s eating several teaspoons of food at each meal!  My naturopath told me that until the teeth come in, a child is physiologically unable to digest starches.  Perhaps his body is finally able to tolerate solids foods and that’s why he’s suddenly eating?  I don’t know but it’s amazing how these two issues resolved themselves literally overnight without any intervention on my part.

As far as the crawling?  After almost two months of being physically able to crawl but resisting any efforts to be on his tummy, in the last week he’s suddenly decided he wants to crawl!  Not huge distances yet, but he’s doing it himself because he wants to.  We didn’t change anything we were doing, but it’s as if the internal sensor told him he’s ready to do this now.

Seeing these noticeable changes in such a short time has helped me find some inner balance and regain my trust in his individual process.  It’s helping me to let go of some of the worries about developmental steps being too delayed if I don’t push harder.  It’s challenging enough with a typical child to trust his inherent growth process when faced with issues that don’t match what is considered the norm, but it’s an extremely prevalent way of thinking about T21 so you have to really choose the paradigm you want your mind to spend time in!

Trusting in his inner time frame doesn’t mean we don’t provide him with a stimulating environment – it means while we do whatever we feel is in his best interest, we let go of the inner tension that tells us we have to make something happen or else.   Letting go makes it so much easier to enjoy the process of watching him grow up rather than worrying about things not happening fast enough.  While we’ll continue to read, talk, play with him – I don’t want to get hung up on the timetable; I don’t want to worry that I’m not enough because he’s not hitting those milestones by a given time.  Yirmiyahu is showing me that with our support and love, he’ll continue to do things when he’s ready.

Avivah

Yesterday I saw a post on a Jewish women’s board that a healthy baby boy with T21 was available for fostering.  I said if he was in Israel we would be willing to take him, but it turned out that he’s in Brooklyn, NY so another lucky family will get the privilege of raising him.

I wish people were given accurate information and support after the birth of a child with T21; it would make such a huge difference in the decisions that are made about their futures before they’ve hardly made it into the world.  I understand people being afraid of the unknown and overwhelmed at what they think is going to be involved in raising a child with T21.  Feelings aren’t facts and fear is a very powerful motivator.  Unfortunately the difficulties in raising a child with Down syndrome is in most cases dramatically overstated.  I’m not going to blithely tell you that there are no challenges – but every biological and foster parent I’ve spoken to with a child with T21 has said the reality was much better than they had been led to believe.

My anguish over the post that I read wasn’t over the need for a foster family.  Sometimes people are overwhelmed and don’t have the resources to meet a child’s needs.  What made me really sad were the comments following the post with the request for a foster family.  This was a board of religious Jewish women, and the overwhelming sentiment I came away with was that giving your child up because of a disability like this is understandable.  What difficulties do they think are involved in raising a child with Down syndrome?

In this case, the baby was healthy.  In about half the babies born, there are heart problems.  Ten percent of babies have transient leukemia (Yirmiyahu was one of these), which means there are highly elevated white blood cells at birth and is treated with antibiotics.  Fortunately, we live in a time in which heart problems like these are able to be taken care of surgically.  Yes, it’s hard to have a child who undergoes surgery or needs to be taken regularly to medical specialists.  Many babies who don’t have Down syndrome have medical issues that include needing heart surgery- but I don’t see parents being advised to give them up for other families to raise.

People point to medical issues when they say that it’s so hard to raise a child with Down syndrome (I’ve seen this a LOT on a support board for those who have aborted babies with T21 – less than 10% of babies with this diagnosis get a chance at life).  In my opinion, this is a straw man.  It’s an acceptable reason for giving up a child though the medical issues aren’t really the problem.  If they were, you’d see people commonly giving up babies with medical issues, but you don’t, even when the issues are much more serious than what children with T21 may face.   Giving this reason keeps us from looking a little deeper and a little harder at our beliefs about parenting, the purpose of life and our roles as  human beings in this world.

1) We’re afraid to be different.  We’ve been conditioned to think that if everyone else is doing something/has something, we want to do or have something similar. We want to fit in. We want to be socially comfortable and we think that means being just like the people around us.   We don’t want a child who looks or acts differently than most of the kids on the playground because of our desire to fit in.  We want a child who will make us proud in ways that are typically assumed to be valuable or at least not cause people to look at us differently.  As a speaker known for her depth and insight once said, there are three main factors in every decision we make: what will others say, what will others say, and what will others say.

So we have to ask ourselves: does a meaningful and impactful life comes from trying to blend in and be like everyone else?  What kind of life do you want to have?  A life that matters or a life of following the crowd, blocking out your inner voice and ignoring your potential to impact the world in your unique way?  If we want to live a life we love, we’ve got to stop being afraid of what everyone else says and thinks.  As I tell my kids, people don’t think about you nearly as much as you think – they’re too busy thinking about themselves.

2) We’re afraid to have difficulties.  In our generation we expect life to be smooth and when there are bumps we feel we’ve been ‘unfaired’ against.  Life really isn’t like that.  Life is filled with daily difficulties, small and large.  We’re meant to be challenged so that we can grow and develop our inherent potential that would remain latent if we were untested.  It’s not always pleasant but it’s good.  Hard and good aren’t mutually exclusive.

3) What is your role as a parent?  Is it to nurture to the best of your ability the child that is born to you, to help him actualize the seed of potential inside of him?  Is it to bask in the approval of others or turn him into a nachas machine?  If it’s to nurture him and love him for who he is, then parenting a child with T21 is pretty much the same as raising any other child.  Every child will require you to stretch yourself to find ways to meet their unique needs.

Some needs truly demand a lot more time and energy than others, and parents really need more resources than they have.  However, I believe that if parents were given a more accurate picture of the reality of living with Down syndrome in addition to letting go of some limiting beliefs, we would see requests like the above seeking a home for an infant with T21 dramatically drop.

Avivah

I can hardly believe it’s already been a year since Yirmiyahu was born.  So much has happened and time has gone so fast, and at the same time, I wonder how a year has already gone by?

It’s been an intense year filled with many challenges, the likes of which I hope I never have to go through again.  But as far as Yirmiyahu himself, he has been a bundle of sweetness that has brought untold joy to us all.

For my readers, what did you think when I shared that we had received the diagnosis of Trisomy 21 after Yirmiyahu was born?  Did you feel sorry for us, flinch at our bad luck and feel we deserved consolation?

I didn’t.

Though it seems most parents are initially devastated by the diagnosis, I wasn’t.  One reason for this is that I didn’t accept for even for one second what the doctors told me to be the final word, as a sentence for what our baby’s life would look like. I knew that they couldn’t predict his future, despite their solemn faces as they delivered the news and told me all the things he’d never be able to do, all the problems he’d have, all the things they were so sure that they knew.  I knew that this baby would have his own journey, just like each of our other children.

There was so much they didn’t tell me – I imagine that every year the list of things that they didn’t tell me will grow.  They didn’t tell me how our hearts would open wider and become more understanding and accepting of people and their challenges.  They didn’t tell us how our paradigm of the world would shift.  They didn’t tell us how much excitement we’d feel over every step of his development – his first smile, when he rolled over, sat, supported himself on both knees, held a bottle, waved goodbye, said ‘mama’ to me ….

They told us he’d be mentally retarded, and the social worker reassured us by adding that kids with Down syndrome love to hug and kiss people and don’t know they’re different.  This supposed consolation was worse than the doctors’ gloominess – this is what I had to look forward to?  None of them told us about the sparkle of intelligence and curiosity in his eyes or the depth of love in his heart.  They didn’t tell us how much he’d be able to learn, or stress how critical to his development our emotional investment in him would be.  They didn’t tell us about the impressive accomplishments of so many people with Down syndrome, things that would give parents so much encouragement and hope rather than fill them with discouragement and despair.  And they could never have told us how lucky we were to have this wonderful child become part of our family.  They couldn’t tell us what they didn’t know.

A baby with Down syndrome has some differences from a typical baby.  And that’s okay. It’s okay to be different.  We’re all different in some ways, and part of our growth as human beings is to widen the circles of those that we accept and include in our lives, even when they don’t look or act just like us.   But a baby with any kind of disability is still much more alike than different from all other babies.  They thrive on our love and acceptance and appreciation.  They have futures that can’t be predicted in advance regardless of their diagnosis or lack of diagnosis.  The future is open to us all and it’s up to each of us to make the most of it.  The doctors forget that.  But we as parents know better.

There are many milestones ahead of us. Crawling, walking, talking, reading.  There will be times of struggle and worry, times we doubt ourselves and times we are afraid for his future.  Like with all of our children.

I am so happy and grateful every single day that Yirmiyahu is part of our family.  As he is.  Because as he is, is just perfect.

Happy birthday, Yirmiyahu!

Avivah