Today is Day 23 of 31 for 21.

 
Grab This Button

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.

 
Grab This Button

**********************************************

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