Fundraiser!

My incredibly generous friend Felicia (she has also written posts for MommaFriendly before) put together a fundraiser for Bu's lab work and treatments. She sells Jewelry In Candles, which is just what it sounds like! You buy an awesome candle, and inside it, you'll find a ring (sized to you!), earrings or necklace. A gift in a gift!

The proceeds are going to Bu's medical bills, I hope you will all share and check out her products! Please click THIS LINK for the event, and make sure you like Felicia's business page, Jewelry In Candles with MrsTrum​.

As always, you can follow our autism journey at our blog or our Facebook page.

Thanks!!!

Our "Autism at Disney" Experience

We recently went to Disney World for the first time since Bu was officially diagnosed…and certainly for the first time since we've gotten to know about Bu's specific needs! Here is some information about the accommodations we were able to receive, and ways we helped Bu enjoy his trip.

Here's some stuff you should know to clarify what's said in the video:

1) Bu is 3 years old, he's on the GFCFSF diet, and he's on the autism spectrum. He doesn't speak (yet), is very sensory seeking (except for touch/tactile), and has hypotonia, which is low muscle tone. He is getting better with all of these things, but he cannot stand or walk for very long without getting fatigued, so he is carried or strolled more than a typical kid his age.

2) Bu gets his supplements several times a day in his "juice", which is typically a homemade, organic fruit-and-veggie puree mixed with water. This is why I personally bring organic baby food pouches or jars/tubs with us to the parks.

3) I took the supplements in "pill organizers" to the park, which was then put in my backpack. If we'd have stayed longer, I might have taken our refrigerated supplements with us and kept them at the hotel. When they would have NEEDED to come with us (such as, after checkout on the last day), I would have taken a separate lunchbox and filled it with ice at the hotel to keep it cool. I also would have added more ice at the parks (asking for free cups of water with lots of ice at any counter service restaurant!).

4) Bu is VERY picky about his chips, which is why I made a point to bring a big bag for each day into the park. At Animal Kingdom (I didn't notice at any other park), they had a booth that sold gluten free and vegan foods, which would have been great for Bu provided I also found a soy-free choice…but a SMALL bag of chips (which wasn't the kind Bu even likes) was SEVEN DOLLARS. Crazy.

Please comment or email me with any questions and I can either answer based on my experience, or I can find out for you. We have annual passes so if there's something in particular that can only be answered at the parks, let me know and I'll do my best to ask or find out next time we go!

Autism, ABA and Gentle Parenting

The first of (hopefully weekly) progress videos for Bu...

I probably won't be posting the weekly videos here unless they deal specifically with a parenting issue, so if you'd like to follow these updates, please join the All For Bu facebook page or subscribe to my YouTube channel.

This vlog is about how ABA (behavior therapy) conflicts with my gentle parenting instincts and how I'm struggling with that...I'd love some input from like-minded parents!



If you can't see the video posted above, you can watch it HERE on YouTube.

Also, if you aren't already, please follow @MommaFriendly on Instagram, where I'm posting about guest post contributions and other random daily tips and funnies as related to pregnancy and parenting.

Autism Vlog - Goals for July through December 2014

Just a little personal update on my son's diagnosis and what it means for the next 6 months of our lives ;)

I'd love to hear from any other parents in a similar position, or even ABA/OT/Speech professionals. Any and all advice is appreciated!



If you're having a hard time seeing the video above, you can click here to see it on YouTube.

Special Needs Homeschooling?

A question regarding special needs homeschooling...

I'm a SAHM of one. We always planned to homeschool even before ASD was in our vernacular...I'm even more passionate about it now because I believe one-on-one teaching is the most effective way to make sure a special child gets exactly what he needs academically, at his own pace.

My 2 year old son is currently receiving therapies through his local Early Intervention office. I have a meeting tomorrow with the school district rep because soon he'll turn 3 and he'll be getting therapies from the school district instead of Early Steps.

Can anyone tell me what my options are as far as homeschooling AND getting therapy from the public school district? I may not be opposed to a half day program a few times a week for socialization, but frankly, I'm terrified of how inept most people in my city are in general, so trusting my special needs child to a stranger that will most certainly not have the patience or understanding of him that I do scares me.

They want to push me into enrolling him in school, and I don't want him to miss out on something that could potentially benefit him, so I'm trying to keep an open mind. At the same time, I don't want to be bullied or feel like I have no choice.

So, anyone else homeschool their special needs child and still receive services/therapies from their public school district? How does that work? Any advice for things I should ask at the meeting or anything I should insist upon?

Thank you in advance, I'm looking forward to hearing your thoughts!

At Home Therapy?

Firstly, a huge thank you to everyone that has contributed in any way to the #AllForBu campaign, and a special shoutout to Jose Marti School in Little Havana, Miami, FL for their outstanding support.

We're setting up a therapy room/learning space in our home for Bu, and we're hoping for any advice or suggestions we can get from other parents or even from professionals that have experience working with special needs kids or kids on the spectrum.

If you can't see the video above, you can watch it directly on YouTube here.




Click here to contribute!
Click here for progress updates!

Walk Now for Autism Speaks...

This past weekend, we went to the Autism Walk in Miami. As I said previously, I don't support the organization monetarily, but I did appreciate that there would be many parents in my same situation all in one spot. I was also looking forward to gathering information about different therapy centers and schools for Bu. Rather than participate in the walk, we walked around talking to professionals, signed petitions, and played in the "sensory tents".

In related news, we've been able to restart speech therapy, order supplements for the next month, and we've even been able to set up some occupational therapy at home to supplement what he should be getting at the center...all thanks to people like YOU donating directly to an autism family (US) instead of an organization. So once again, thank you for your continued support.

On a personal note, THANK YOU.

When I wrote what I did "coming out" as an autism family and why I don't support donating to Autism Speaks, I never expected the response I got and I certainly never expected people to want to donate directly to my son for his therapies, supplements, etc. I'm overwhelmed at the generosity of the people around me and blessed to find so much support. Thank you all!!!! 
 

In our house, Autism Awareness is all year 'round...

I wanted to take this opportunity, April being Autism Awareness Month and April 2nd being World Autism Awareness Day, to share something personal on the blog. As much as I post photos or stories online, I am fiercely private about my family life and I debated internally a LOT before finally deciding to put this out there.

The CDC recently reported that one in 68 children in America is diagnosed with autism spectrum disorders. The numbers grow more and more every year. It is yet unknown what causes autism, or what can be done to treat or cure it. It's an absolute mystery in every way, and the unknown is a scary thing.

My son "Bu" is that one in 68.

He is nonverbal. He self-stimulates by flapping his hands and sometimes pokes his own eyes or slaps his belly to receive sensory input. He does not pretend-play at all and rarely even notices when other children are around him. He shuts his eyes when he's overwhelmed. He's only recently become more social with family members besides my husband and me, and his eye contact used to be nonexistent.

He was developing on track until about 15 months old, when he started walking. As soon as he picked up this skill, he started regressing. He stopped clapping and pointing. He stopped giving high-fives when asked. I've been told by medical professionals that this happens a lot, where the brain takes up so much energy coordinating gross motor functions when learning to walk, that the rest of the systems suffer. It's supposedly quite common, though I'd never heard of it.

We saw a neurologist in December that specializes in children on the spectrum. She told us based on her observation and questions asked that Bu wasn't 100% textbook ASD, but that we should seek treatment as though he is because all signs point that way. We were told he operates on a 9-month old level (he was 27 months old at the time) and that a formal diagnosis would be made in a year depending on how he responds to therapies.

It's been 3 months since that visit. He's been on a gluten/casein/soy free diet for 6 months. He's on various vitamins and supplements and I add new ones regularly as I learn about how they might help him. We are working with an occupational therapist, a speech therapist, and his developmental pediatrician. Our team is truly phenomenal, and I couldn't be happier to have people that care so much about Bu helping us. His eye contact and social expressions have grown remarkably. He's far more aware of his environment and the people in it. 

Most days, I'm of the mindset that I'm going to kick autism in the ass. I spend every spare moment reading, asking questions online, doing webinars (explains why I haven't been posting as much lately, huh?). I've made helping my son and making his life easier my full time job. Some days though, I'm overwhelmed with sadness. I don't know if my son will EVER tell me he loves me. I don't know if he'll ever be able to have friends, to have a relationship, to have a job...what will become of him when I'm gone? These are all very real things that could and will be his experience, and it hurts my heart. Life is challenging enough, without this on top of it...and no one wants to see their child in a tough spot. 

I love my son and everything about him. I actually think sometimes (on good days) how weird it'll be when he starts talking because his little grunts and giggles are so much a part of him. It's strange to love someone so much as they are, and at the same time wish things were so different. I find many autism parents wouldn't dare say something like that, but I'm keeping it real. I love my son and I love the person he is. I do not love that his life will be exponentially harder than that of his peers because of something he didn't choose.

This weekend, I'll be going to the local Autism Speaks walk. I will be going to try to meet other parents in my huge city that share my experience, and to gather resources in my community. I am NOT, however, donating to Autism Speaks. Here's why: I don't donate to any causes that have walks or events because guess what it takes to put on these events? Money. There's no way of knowing how much of your dollar goes to research truly. Worse yet, I've never heard of a family with children on the spectrum getting financial help from these organizations. Research is obviously important, but as a mother struggling to pay for therapies, vitamins, a special diet, etc...research is something that's out of my scope. I'm actually considering opening a SmartyPig or GoFundMe for Bu to ask people for donations for his therapists because thanks to his crap insurance, he hasn't been able to see his OT for almost 2 months. The struggle is real. Really real.

So, there you go. This is our life. I plan to be much more open about our daily life, our regimen/protocols, treatments and how they're going, etc. When I first started looking up information on autism, I was both overwhelmed by all the stuff out there, and disappointed at how little it helped. So hopefully, the things I write about our experience helps at least one family. 

What can you do? Easy. 

-Do not judge. You never know if that child at the store having a fit is really a brat, or if he's having a meltdown because the sound of someone's shopping cart is overwhelming. 

-Don't ask stupid questions. "Are you sure? He doesn't LOOK autistic" helps no one. 

-Be kind. A child might not be trying to give anyone a hard time, they might just be having a hard time. It gets frustrating to not be understood. 

-Don't assume. We're a chemical free home and we do not vaccinate. These things happened long before the idea of autism even entered our vernacular and has absolutely NOTHING to do with Jenny McCarthy, thanks. 

-Be patient. My son doesn't usually respond to verbal cues from unfamiliar people, and rarely makes eye contact with most people. He's not being rude, that's just how it is. Don't take it personally and don't insist.

-Donate your time or money to FAMILIES, not organizations. We need them more than they do. You'll make a much bigger difference. This includes things like just asking how we're doing with the intention to REALLY listen and let us vent.

-Be understanding. People with ASD are still people. Not less, just different. 

***EDITED TO ADD*** 

For those of you that have asked how you can donate to Bu directly (and thank you so much for offering to help, I'm totally overwhelmed by the response!!!) I started a GoFundMe for him. Please make sure you read the whole description!!! And thanks so much again for your love and support! You can read more about our autism journey at All For Bu

Superfoods and Supplements - Protein Rich Superfoods

If you cannot access the video above, please click here to watch it on YouTube.

What are some ways that you incorporate protein into your picky eater's diet? Please share your comments and suggestions below! The next video in the series will be up next week :)

Superfoods and Supplements - Probiotics

If you cannot access the video above, please click here to watch it on YouTube.

Do you give your child probiotics? Have you experienced any benefits or even drawbacks? Please share your comments and suggestions below! The next video on protein-rich superfoods will be up next week :)

Superfoods and Supplements - Nutritional Yeast

If you cannot access the video above, please click here to watch it on YouTube.

Please share your comments and suggestions in the comments! The next video on Probiotics will be up VERY soon! :)

Superfoods and Supplements - Coconut Oil

 If you can't see the video above, please check it out on YouTube HERE.

This is the first post of...well, many...about superfoods and supplements. As promised, I'm going to detail different things we give our son to fill holes in his nutrition that his diet might leave to be desired. There's also benefits to mommas including most of these in their own diets as well!

This post is dedicated to COCONUT OIL.

Coconut oil has been demonized in the past because it contains saturated fat. In fact, coconut oil is one of the richest sources of saturated fat known to man, with almost 90% of the fatty acids in it being saturated. It contains so-called Medium Chain Triglycerides (MCTs) – which are fatty acids of a medium length (duh LOL). Most of the fatty acids in our diets are so-called long-chain fatty acids, but the medium-chain fatty acids in coconut oil are metabolized differently. They go straight to the liver from the digestive tract, where they are used as a quick source energy or turned into so-called ketone bodies, which can have therapeutic effects on brain disorders like epilepsy, autism and Alzheimer’s.

Also of interest is the fact that another great source of Medium Chain Fatty Acids is… breast milk!
Breast milk is rich in Lauric acid, the same fatty acid found in coconut oil...and it’s there because, in addition to easily digestible nourishment, it provides immunity against infection. the Medium Chain Fatty Acids in coconut oil are believed to help with the body’s absorption of vitamins and minerals from other foods.

According to the research, when a lactating woman adds foods rich in lauric acid to her diet, the amount of lauric acid available in her breast milk increases substantially to levels three times the original level and nearly double the amount of capric acid. A single meal of coconut oil can significantly affect the breast milk fatty acid compositions for 1 to 3 days with the maximum increase occurring during the first 10 hours. This data supports the hypothesis that diet directly affects the quality of human milk and possibly the womb environment.

Also, coconut oil can be used to ease dry skin, diaper rash, cradle cap, even to moisturize nipples after breastfeeding or pumping!

This is my favorite way to use coconut oil, because it stays liquid even when cold or blended into smoothies...although Costco sells HUGE tubs of organic coconut oil for about $15...much cheaper than I've found organic coconut oil anywhere, even Trader Joe's. It's important to try to get organic or at least cold-pressed or virgin, because the cheaper stuff is usually extracted with chemicals.



Sources: 1, 2

My two cents on the "Jenny McCarthy thing"

Because now THREE people have sent me the Jenny McCarthy article asking for my thoughts, here they are.

Jenny McCarthy is NOT why we don't vaccinate. The idea that I base my kids health choices on a "celebrity" is insulting.

The article is from 2010. Why anyone cares today is beyond me, but the article has popped up on my newsfeed 100000 times.

She posted the attached tweets today, so according to her, she never lied, which is why she never apologized.

Regardless of what her kid has or doesn't, she is the mother of an unwell child. Not one of us understands what it must be like to live with her child. I actually feel for her deeply, because I know what it's like to go from specialist to specialist to try to help your child. She's a mother who has been through hell trying to do what's best for her kid in hopeless circumstances. Why people are always so quick to judge and attack is beyond me.

Mad she speaks against vaccines? GOOD. Maybe it'll get YOU to do your own research and make an informed choice one way or the other. But don't deny her struggle and jump to discredit her experience just because you disagree with her.

So yeah. The first time I was sent the article, I didn't think anything of it. But the fact that THREE PEOPLE (none parents, oddly) thought I might like to comment on it has me a bit fired up and I thought I'd publicly share the two cents everyone is so interested in.

(The article in question, I'm mobile so I can't hyperlink: http://graneyandthepig.wordpress.com/2010/02/27/jenny-mccarthy-my-bad-turns-out-my-kid-doesnt-have-autism/)