When Jackson was first diagnosed with Autism at age 2 1/2 I began to worry about many different things…

*would there be treatments

*how would this affect his future

*will my son be  “normal”

*I fear the day that he is picked on by other children because he is “different”

When you are the parent of a Special Needs child, you have all your typical parenting fears and worries, and then on top of that you have added ones that other parents may never worry about. After Jackson’s Autism diagnosis, came the Duchenne Muscular Dystrophy diagnosis. With that, all of my worries, fears, and concerns came hurling at me like a tsunami.

It has been years since that day of diagnosis and those fears, concerns, and worries have only grown. This past week they all came to a head when I signed Jackson and his younger brother up for a tennis summer camp. Why? Because every child deserves to have the opportunity to do things that interest them. Jackson asked me if he could sign up and I will always support his interests. It was a double win when his little brother wanted to do it as well! So off we went to tennis on a beautiful sunny 75º  morning.

We arrived and instantly that mom guilt hit me, “I forgot the tennis rackets in the garage”. In all the hustle and bustle of the morning, medicine, eating, etc I completely forgot to grab them. I threw a quick prayer up that the coaches would have some extras. The boys were a bit nervous and apprehensive for a new sport, but I quickly found a bag of rackets, let them pick one out and off they went to practice.

I went over to my car and began watching the interactions between my boys and the other children.  All seemed fine.  A few minutes later I noticed that they were doing drills where they held the racket horizontally and balanced the ball on it all while maneuvering through multiple cones on the ground. I looked up to see my son struggling with the task. While most kids could whiz through it, Jackson was on his 4th attempt and the ball just kept dropping.

He pushed forward though and did not quit.

I began sorting through emails while they divided up the kids into teams to all get in line to hit the ball.  My sons were divided up on either side of the court. Then my gaze turned to the far right where Jackson was. His body language seemed a little off. He looked uncomfortable. As I watched closely I could see him put his head down. “Odd” I thought. Then I saw a group of boys talking to him. Then one boy in particular continuously saying something to him. I watched Jackson’s mannerisms and then saw him turn around, put his head down, and not face the boy. It was then that my mama heart realized something was not right.

Jackson looked as if he was about to cry. That’s not like my child. So I waited a second longer and then when I saw Jackson’s facial expression from him barely lifting his head up for a nanosecond, I raced over. I signaled to him to come off the court. He ran over to me and was visibly upset and crying. It took a minute to even get him to be able to talk about what just happened. And then it came….the words that ever parent of a Special Needs child dreads….one that they know will eventually happen….but pray with all their might that today will not be that day.

Today WAS that day.

Jackson looked up at me, with his big beautiful brown eyes and said

“They were making fun of me.

They were calling me names, laughing, and pointing at me.”

Of course all of my mama adrenaline kicked in and I desperately wanted to know WHO and WHAT DID THEY SAY and LEMME AT EM’! But my heart knew that kids can and will do these things when they perceive someone who is “weaker”. And for all the anti-bullying campaigns in our town, there is no way that bullying will ever end. There will always be someone out there who is hurt and thinks that they best thing to do is to hurt others and put them down because of their own pain and insecurities.

So what did I do?

I took him aside and told him how sorry i was that that happened. I explained that he shouldn’t ever let someone make him feel less than. That he is amazing, smart, strong, capable, and loved. I wiped his tears and told him that we could leave if he wanted to. He lowered his head and said yes, he wanted to go. I went over and talked to my other son and asked if he wanted to stay or go. I let him know that either would be fine. He said that he did not want to stay and that he wanted to go check on his brother. On the drive home I overheard little brother say “I’m sorry i wasn’t closer to you Jackson, I didn’t hear that kid from so far away. I wish I would’ve and I would’ve told them not to talk to you that way”. Did that make my heart smile…yeah. Because brothers get on each others nerves and fight and whatnot, but at the end of the day, we are family and we have each others backs.

So why does this whole situation bother me SO much?

Why not just let it roll off my back and say KIDS WILL BE KIDS or BOYS WILL BE BOYS?

Because it is NOT okay!

Boys need to have strong and kind role models. To learn that being cool does not come from putting others down. That just because you hurt, doesn’t mean that it is EVER okay to hurt another.

As a mom of a child with 2 disabilities, this is what I want others to know.

We all want the very best for our children. The moment that we hear that our life is turned upside down due to a genetic condition, physical disability, cancer, whatever…we  are scared. We don’t know the right thing to say or do. But each day we learn and we grow. We gain strength. But we all know that some day something like this will happen. And all we want is for our children to live as normal of a life as they possibly can. To be able to fit into society and not feel like such an odd duck. We hope that we have filled their self-esteem buckets so high that the rest of the world cannot poke enough holes in it to make it dry. 

That day I worried that the comments made by this careless child made a mark on my son. So we went home and discussed it a little bit longer. and then I told my boys the quote by Michelle Obama, “When they go low, we go high”.

So we decided to rewrite the script for the day. And we went out to breakfast, because fried chicken from Chick-fil-A always makes life better, right? And then we cancelled our day plans and booked a hotel and went swimming in the summer heat because you only live once…

BUT if you do it right….once is enough.

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.

When Jackson was newly diagnosed with Autism, I found this Welcome to Holland poem written by Emily Perl Kingsley.

Now with his Duchenne Muscular Dystrophy Diagnosis I have so much more love for these beautiful words.

I immediately fell in love with it and put it right in my journal.

There is not a time when I read it and don’t shed tears.

I believe it captures a lot of the emotions I have felt.