Category Archives: LIFE joy
22
Our toxic world
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- Posted in Autism, DMD, Duchenne Muscular Dystrophy, Jackson, LIFE joy
We live in a very toxic world today.
Poisons and dangers abound and keeping our children healthy can be very difficult.
I never thought I would be one of those “green” people, but after doing research and learning so much more about the product’s I’ve been using, it makes it impossible to go back to using them.
It reminds me of the quote that I pretty much live by…..
When you know better,
you do better.
I’ve made a list of the things I’m changing and wanted to share:
Acetaminophen
Acetaminophen shuts down the detoxification pathways in the liver, which rids the body of metals and poisons.
Ibuprofen is better for a pain reliever or if a fever reducer is needed.
Read more here.
Arsenic in Chicken
The good news is that arsenic-free chicken is more readily available than it has been in the past, as more processors eliminate its use.
Tyson Foods, the nation’s largest chicken producer, has stopped using arsenic in its chicken feed.
In addition, Bell and Evans and Eberly chickens are arsenic-free.
You can read more here.
There is a growing market in organic chicken and birds labeled “antibiotic-free”, they both don’t contain arsenic.
Excitotoxins
Strong scientific evidence suggests these substances could cause brain damage in children, adolescents and adults; with strong emphasis on children and elderly individuals. They could affect the development of a child’s nervous system;
resulting in learning and emotional difficulties later in life.
Excitotoxins include MSG, Aspartame and all other sugar substitutes, aspartate, Cysteine, cysteic acid.
The following are other names for MSG-
Monosodium Glutamate,
Hydrolyzed Vegetable Protein,
Hydrolyzed Protein;
Hydrolyzed Plant Extract,
Plant Protein Extract,
Sodium Caseinate,
Yeast Extract,
Texturized Protein,
Autolyzed Yeast,
Hydrolyzed Oat Flour,
Calcium Caseinate.
Things that help excitotoxin damage: Coenzyme Q10, acetyl-L carnitine, niacinamide, riboflavin, methylcobalamin, and thiamine.
Fluoride
Fluoride is a neurotoxin and should not be consumed by children!
It is implicated in thyroid disease, bone disease and arthritis.
In the scale of toxicity, fluorides fall between arsenic and lead.
It is in our water, which is why we have put in a reverse osmosis water filtration unit in our house.
Fluoride is in toothpaste, some mouthwashes and dental cleanings (ask that they only use pumice to clean your child’s teeth.)
Schools routinely give children fluoride during “health services” so make sure you inform them IN WRITING that your child MUST NOT be given fluoride during health services.
Have this written into your child’s IEP.
Let me tell you, i scoured the internet for some good, safe toothpastes and it took awhile.
But i found some that I am happy with, the Jason brand has a couple of kid varieties and so does Spry.
Be careful when buying Tom’s of Maine brand because we had one that was carried in our natural food store,
but in tiny letters it said that fluoride was added.
You can either order the fluoride free one online or I found mine at Kroger in the natural market section.
The others I ordered online.
I also just learned that there is mercury in High Fructose Corn Syrup.
Please be aware and check out the labels at the store before you buy these products,
typically found in sweetened beverages, sodas, breads, cereals, breakfast bars, lunch meats, yogurts, soups and condiments.
I was surprised that it was in our ketchup and bbq sauce. Guess where those bottles went……TRASH!
Nitrates/Nitrites
Foods containing nitrates or nitrites, like those in preserved meats, bacon, ham, hot dogs and pickles should be avoided,
since children with autism are known to have higher levels of these toxic derivatives of nitric oxide stored in their bodies due to an inability to detoxify.
This is a major concern seeing as I need to purchase a few different brands now because Jackson loves hot dogs, lunchmeat, bacon, ham, and pickles.
I found nitrite,nitrate, gluten free ones at Costco this week and stocked up.
I also found that Boar’s Head lunchmeat is free of these as well, a lot of deli shops use this as their meat.
Trader Joe’s is supposed to have the healthiest, best pickles.
PBDEs (polybrominated diphenyl ethers) –
Here comes something that really frightened me………………
Fire retardant chemicals are in beds, pajamas, furniture, sofas, televisions and computers.
This basically means the fire retardant chemicals are very toxic to asd kids and just about ALL kids pajama’s have them.
I have found organic pj’s that do not have these chemicals in them at Hanna Andersson online, Costco has an organic pj line, and carter’s has some- but you have to make sure that they say the garment does NOT have flame resistant chemicals in it.
Just check the tag and make sure it doesn’t say anything about flame resistant chemicals.
You are safe if you stick to the 2 piece cotton ones.
Sunscreen
Watch out for these bad ingredients: Oxybenzone (Benzophenone-3), Micronized Titanium Dioxide, Nano Titanium Dioxide, Nano Zinc Oxide.
Also I tossed out all of our baby bath products and will now only use California Baby.
They are gluten, soy, dairy, peanut, etc free and are the best!
They have bath bubbles (with bubble wands!), shampoo, baby body wash, lotion, diaper cream, sunscreen, and a few other products.
I love them, they are a little more expensive, but totally worth it.
You can find them at Target.
Teflon in carpets, clothes and pots and pans – no nonstick or aluminum pans – glass, cast iron or stainless only.
According to the Environmental Protection Agency, some of the highest C-8 (Teflon chemical) levels were found in children.
This is super scary and we are now taking down ALL of our non stick cookware and investing in a stainless steel set.
We also are only using glass baking pans, getting rid of all plates and bowls that are made in china (because of different standards/code of production) and that have color, paint, etc on them because they can contaminate the food.
We are purchasing all white, american made, Corelle brand plates and bowls (careful though because their plates and bowls are made in the US, but their mugs are made in china, so just read everything carefully so you are informed).
Make sure your childs drinking glasses are also glass and american made or stainless steel ,so that you know the standards are being achieved when producing them.
I found some great stainless steel sippy cups on amazon last night.
Try to avoid #7 plastics.
Plastics with the recycling labels #1, #2 and #4 on the bottom do not contain BPA.
We’ve also switched to all organic cleaners for the house.
The brand of organic cleaners i like is called Baby Ganics and Honest by Jessica Alba. You can find it online or Target carries them.
9
Dear Newly Inducted Special Needs Parent
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- Posted in Duchenne Muscular Dystrophy, LIFE joy
I recently read this article and it resonated so deeply with me that I just HAD to share it.
I see you.
And I don’t mean I physically see you (though I do). I mean I see inside you — I see the storm that’s tearing your soul apart, bit by unimaginable bit.
I can see you because I am you. Not now you, of course, but rather future you. And I’m here to say, I understand.
Whether you’re sitting in a hospital NICU or your car after a visit to a specialist’s office, your mother’s living room or your cubicle at work, I know your pain: a primal cocktail of fear and sadness and desperation and anger.
A feeling like none other you’ve experienced to date.
“They” have told you the second worst thing you could hear as a parent: Your child has special needs. Your child will never walk, talk, hear, see, process, understand, feel, be able to [insert physical/cognitive/functional ability here]. Your child is “not normal”.
And whether your child has suffered a sudden brain injury or suffers from a congenital disease doesn’t matter. The end result is the same: This child’s future is not the one you had imagined. This child is not the one you had imagined.
This child will not have the adolescence about which you have spent hours and days and months and maybe even years fantasizing. This child will need far more than you have anticipated. This child will become at once a trial and a blessing.
You feel guilty for having these emotions, I know. What kind of parent perceives her child as a trial? You should, after all, be glad s/he is here at all. And OHMYGOD you are. You are so indescribably thankful. You are so filled with love for this child, you could burst at any moment. But you are also worried. Very, very worried.
You feel guilty for questioning how you might possibly give this child the care s/he needs. You feel guilty for wondering how you will provide your other children with the attention they require. You feel guilty for fretting about how you will pay for all the medical expenses. You feel guilty for contemplating what all this will mean for your family routine and dynamics.
Some judgy types will jump to curse you for thinking of your child as a burden because that’s all they see in your raw emotion. They will ignore the undying love you have for your child. They will ignore how incredibly grateful you are to have your child. They will ignore your desire to do whatever it takes to ensure your child is safe and happy and healthy. Instead, they will preach about how they would never ever ponder these questions, or worse, if they’re special needs parents as well, how they have never had these same feelings.
Forget them. They’re liars. And perhaps convincing themselves that they would never is just their way of coping.
You will mourn for your child in the same way one might mourn a death. And you are mourning a death, if you think about it. The death of the hopes and dreams you had for your child. The death of the plan you had imagined for your family.
So go ahead and mourn that death. There is nothing unnatural or heartless or improper about it. It is part of the grieving process. It is necessary.
You will be bombarded with “God only gives special children to special people” and “This is God’s plan” from well-meaning people who think they’re doing you a service or simply don’t know what to say.
Grit your teeth and bear it. None of it’s true, so don’t worry. God hasn’t specially selected your child to suffer a lifetime of physical and emotional pain. He hasn’t chosen you out of many to live in agony on purpose. God isn’t that cruel.
You will see parents with “typical” children in the grocery store and at the park. You will see pregnant women smoking or drinking caffeinated beverages. You will see parents abusing their children, both verbally and physically. And you will hate each and every one of these people with all the darkness and malice your soul can muster, for how do they, with their carelessness and ungratefulness, get to escape your child’s and your living hell?
You are perfectly justified in having these feelings. But remember, it isn’t their fault. And while we’re talking about fault, it isn’t yours, either. So indulge in these emotions privately. Most importantly, don’t let them eat you up inside. They are perfectly natural but also potentially dangerous. Entertain them with caution.
Your child will grow and flourish and defy expectation. The cloud of depression and anxiety and despair in which you live will thin. You will feel better. Much better. Many of your initial fears will be allayed as your child comes into him/herself and his/her body. Some of those fears will remain, but they will not burn as hot in your heart.
Some may mistake your poise and grace and got-shit-togetherness as a sign that you’re “over it.” They may expect you to be just as social and able and willing and available as everyone else. After all, parenthood is hard for everyone, so what’s the big deal? What makes your life so much harder than theirs?
Just remember that they don’t know — can’t know — what it’s like to live your life. They don’t know just how many therapists and doctors your child must see, each with his or her own separate set of “homework” assignments to tackle. They don’t know that every play date is just another therapy session in disguise. They don’t know how much time and energy it takes to get one’s shit together every day. Their jobs are hard. But yours — yours is hard in a different sort of way.
The fact that your job is hard does NOT, however, make you a saint or a superwoman or a better parent. It simply makes you capable of doing what needs to be done, just like everybody else. What needs to be done for you and yours may take more time and energy. That’s the only difference between you and them.
Eventually, while you may still ponder the what-ifs on occasion, you will mostly be unable to imagine life any other way. You will be comfortable in your routine. You will be well.
So let me remind you, newly inducted special needs parent, that I see you. I see inside you at the storm that’s tearing your soul apart, bit by unimaginable bit. And I promise you, it will get better. It will be OK. You will be OK. Most importantly, your child will be OK.
And I know this because I am you. Not now you, of course, but future you.
Original article here.
25
Jackson- from the beginning
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- Posted in Autism, Duchenne Muscular Dystrophy, LIFE joy
I started this website talking about Jackson and the diagnosis with Duchenne Muscular Dystrophy, but we had a story way before that fateful day, so I think it only makes sense that I start from the beginning with Jackson.
To read about the Duchenne Muscular Dystrophy Diagnosis, click here.
Jackson was born on April 17th, 2008
I went into labor the night before with him when my water broke at 4:45pm
I was in labor for 12 hours when he was finally born the next morning at 4:55am.
He was so adorable, had a TON of hair, and we immediately fell in love.
The first 3 days were great, but then after that everything quickly became difficult.
Jackson had a ton of feeding issues and I was in the hospital working with the lactation consultants like crazy.
He was losing weight, but refused to nurse.
I ended up having to pump and giving him milk that way and supplementing a little as well.
After every time he would eat he would then scream so intensely, for 1 1/2 – 2 hours, after EVERY feed.
I could tell he was in pain and thought it was gas, so tried a few different problems for that.
He ended up having some horrible colic that lasted until he was 4 months old.
It was SUCH a difficult time and it really made me question myself as a mother.
Once we finally found a formula (Nutramigen) a hypoallergenic formula and then mixed that with acid reflux medication and it seemed to do the trick.
Only 4 long months of colic and then we were on a much better path!
From that moment on I felt like there was NOTHING that I couldn’t handle, I’d already got through the most trying days with him, so I had no more fear looking ahead.
Everything was smooth sailing for quite some time.
It was around 16 -18 months that I began to have mother’s intuition and had a feeling that something might be wrong.
There were a few clear things that made my days extremely difficult and that was mainly the horrific meltdowns everywhere we went.
There was also the fact that Jackson wasn’t really talking at all and there was a complete lack of eye contact.
I am a lover of books and noticing these few things, I began looking things up and thought it could possibly be autism.
I enrolled him in an early intervention program for some guidance and it wasn’t the best fit for us.
Since he had no known diagnosis yet, they would almost use him as a guinea pig and try different things on him,
and more often than not I would pick him up and I would hear him screaming from an entire hallway over.
I still have a hard time with weighted vests…haha
I took him out of there and began doing private speech therapy.
We went a few times a week and in the meantime I researched the right doctor and found an autism expert in Ann Arbor, Michigan, named Dr. Solomon.
We would have to wait quite a long time before we could get an appointment and in the meantime Jackson saw many other doctors, but no answers came from any of the appointments.
Just frustration, fear, and tears.
After waiting months before we could see him, Jackson finally got in, he was 2 1/2.
We spent 3 hours with the doctor, he assessed Jackson, played with him, got a sense of who he was, and it was a WONDERFUL appointment.
We walked away with a mild autism diagnosis and actually what should have been a dark, difficult day was actually a relieving day.
I had known for the last 8-10 months that something was off, but no one could figure it out.
It took an autism expert of 20+ years a couple of hours and he could tell me exactly where Jackson was and how we were going to get him better.
I learned that there was a school for children with autism that is ranked top in the country because of all the services they get:
Speech therapy
Occupational therapy
Physical therapy
ABA therapy
and Dr. Solomon’s approach, The Play Project
Not only do the children get time for socialization with other peers, they also get half the day one on one with a teacher.
They also had a giant play room/ sensory center that the children just LOVED. He began school when he was 2 1/2 and remains there currently.
He will be leaving in June and then beginning kindergarten in the fall.
To see the progress that came out of this school, followed by therapies at home, and also incorporating a biomedical doctor with supplements, Jackson has changed 180 degrees.
He is such a wonderful, sweet, calm, inquisitive boy. The teachers are amazed at his progress, as are we.
It’s not to say that the whole autism diagnosis was a piece of cake.
After being relieved to get the diagnosis and start receiving the right therapies, there was a lot of emotions I had internally.
I didn’t want to tell anyone that he had this diagnosis.
I didn’t want people to discount him, to think that he is unteachable, or to think that he can’t comprehend what was being taught to him.
It was so excruciating when other parents would ask why he wasn’t talking {he also is huge for his age so he looked 1-2 years older).
It took me quite some time before I told anyone about the diagnosis.
I just wanted people to love him and see him for who he was, not a label.
I read just about every autism book I could get my hands on and tried everything you hear about.
It was actually how we got to the Duchenne diagnosis,
we were meeting with our biomedical doctor, about to begin supplements,
when she ran that bloodtest and it went awry after that.
I have learned that in this life you have NO IDEA what is going to be given to you.
You just have to consciously make the choice to move forward, be happy, have faith, and know that there is a greater plan and that it will all work out.
All is Well.
To learn a little about Duchenne, here is something I made up for Jackson’s new school, read here.