Friday, April 21, 2017

Five stages of death and dying, Remembering our diagnosis date.

Parts of this post has been copied from our "Care Page"

March 11th, 2010 is a date I will never forget. Much like the date someone is born, or the date you lose someone dear to you.

Here is the heading and one of my first thoughts from the care page we started way back then in an effort not to have to "talk" while crying about it to our family,  or to have to tell the story of our concerns about Brady that lead us to taking him in to be evaluated over and over. This heading pretty much sums up exactly how we were feeling, and to some extent still feel today. (April 21st, 2017)

Working my way through the grieving process. Denial, check. Anger, BIG check check. Feeling sad for my baby boy...I WISH I could bargain all of this away...and avoid acceptance all together.

On March 11th, 2010 after multiple appointment​s throughout February and March, we got the news that confirmed our fears. Brady was diagnosed with Autism. I started this page to let all my friends and family know of Brady's progress, and what we are learning to help him overcome this thing. If you visit, please leave us a little note from time to time as any and all words of encourageme​nt will help us all get through this difficult time. It is going to be a long road, and as the development​al disability case manager suggested, we need to "fasten our seat belts". Brady is very smart, we feel his case is not severe, and we are confident h​e will do really well, so hopefully it won't be too bumpy of a ride. Please visit us often, check on our progress, leave any words of encouragement...or just say hi to let us know you cared enough to visit. Thanks! Brady is a very special loving lil man, who's favorite spot in the world is on Mommy or Daddy's lap.

The day we got our diagnosis it did feel like someone died. I know that is a bit morbid...but it is true, It is real, and it is how we felt. For anyone who HAS lost a child and is reading this, I mean no dis-respect and PLEASE do not comment that we are not allowed to feel this way. If you do not have anything nice to share...please keep your comments to yourself. This blog is a place for us to organize how WE feel, and all the things we have overcome, not to challenge anyone else feelings. Thank you for respecting that.

Plus, maybe...just maybe our trials and tribulations, and the documentation of everything we have been through as a family will help another family.

Ok, now on to how we immediately felt in the days and weeks following that fateful day.
We were in shock, disbelief,  and a thousand thoughts were running through our minds. We were lost. We didn't know how to move forward with our new reality.

We didn't lose our son that day...but we did lose many of the hopes and dreams that we had for him.  Simple things, like daddy always wanted a boy to play football in school. Will he be able to do that? Not likely if he can not communicate enough to understand the game. Will he learn to read? Will he graduate from high school? Will he go to college? Will kids tease and bully him because he is different? Will he be able to hold down a job someday? Will he be independent when he grows up? Will he be able to take care of himself? Will he fall in love? Will he get married? Will he have kids of his own someday? AND if none of that will be possible...will he live with us for the rest of his life?.....scratch that, for the rest of ours?? OMG?!?! What will happen to him when we are gone?? Who will take care of him? Plus a MILLION more what if's??? So overwhelming and SCARY!!

Skip to today, and don't get me wrong...we have NEVER lost hope, and will never give up hope that he will grow, and that by putting all the puzzle pieces (multiple interventions) together that this monster called "autism" can, and WILL be defeated!

Back in January of 2017 I saw this post on Facebook and had to comment:

Why I gave up hope as an Autism Mom.
Here is my response.
Ok I get most of this, and I am not judging this mom for what she wrote...but for us...I will never give up HOPE. It is at the center of who I am. Autism has shaped all 5 of us. It has become a part of all of our identities. Autism is a struggle, but it comes with many hidden blessings. Piper is more tolerant and understanding of her peers with "quirks". She is kind and loving and loves her brother with all her heart. Hayden likes to help Brady by modeling the things we do and say to try and help his brother learn and grow. We all are healthier as a result of our dietary and other changes around the home to minimize Brady's exposure to the toxic chemicals in our environment. There are many things we never thought Brady would ever be able to do. Play with his brother, check. Feed himself, check. Brush his own teeth, check. Get himself dressed, check (most days). Be fully potty trained, HUGE check! (Summer of 2015, Age 8 while in Hawaii, Thank God!) sleep through the night, check (with a little help from melatonin). Speaking one word at a time, check. Smiling for pictures!! Check! These simple things are things most parents take for granted. All of these things we feared might never happen for him, but they have. All in HIS OWN time. Just because he is on his own milestone schedule, why on earth would we ever give up hoping that maybe just maybe someday he can speak in sentences, support himself and live on his own, fall in love, get married, and have babies of his own? We love him for who is is today, but we will never give up hope that he will be better tomorrow then he is today, and so on, and so on. We love you Brady and we will never give up HOPE.
This is Brady's school picture from fall of 2016:
We never thought we would get a good school picture with Brady looking at the camera, and smiling...but we have!  Everything in his OWN TIME!! NEVER give up hope!

Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed healthcare provider. Any recommendations are for educational purposes only and are believed to be effective. However, since USE of any information provided herein by others is beyond the control of Michelle Bacon, RN, no expressed or implied guarantee as to the effectiveness of this information can be given nor liability taken.

Thursday, April 20, 2017

Update: April 2017, Home from our 1st Stem Cell Treatment, Panama!

It has been a really long time since I have posted on this blog. A friend , and fellow stem cell mom, advised me to write down all the "new" things we notice as far as new abilities and changes in Brady following his stem cell treatment. I was starting to post these updates on Facebook and then realized that it would be really hard to keep track of all of Brady's progress updates since they would get lost in either my own news feed or in a group news feed. So, I figured it was time to try and keep everything in one fact I have a care page for Brady that I think I will go back and cut and paste those updates on here by the date they were originally posted in an effort to try and see all our progress updates in one place. Sometimes I forget just how far we have come since our diagnosis in March of 2010. It will help us as a family keep track of where we came from and how far we have come as a result of the many interventions we have tried. I also have a wellness blog that I have neglected, and I am not sure if I may duplicate some of my posts from here on there. I started that blog while I was in school to study aroma therapy, and complementary alternative medicine. That blog is not "autism" specific and can help many people who might not otherwise read a blog specifically about autism. We will have to see how much time I have to post in both places.

Here is what I posted on Facebook on April 12th after only TWO infusions!

We are in Panama for our first stem cell treatment. Here is what happened tonight after only two injections (2 more to go)!
Brady is 9 and before stem cells he was mostly non verbal. Before this week has mostly only been able to echo or say one word at a time.
Tonight we had something happen that has NEVER happened before...
Tonight when daddy was tucking Brady in bed he said "I want pizza". This was completely un prompted no coaching no queuing, nothing on our part. He said all three words all by himself! If we knew where we could get gluten free pizza here I would order him 10 of them! We are so thrilled!!!! He has been babbling a ton too! Not all of it is recognizable words but he seems to really be enjoying finding his voice!! Yay stem cells!! Oh and tonight he made really good eye contact with me, he held my gaze for so long I was the one who struggled not to look away!

Here is what I posted on Facebook on April 18th:

Ok, we just got back from Panama on Sunday. Cells are working! I was in Brady's room with him and just got attitude from him!! The doctors told us how important it is to really push him when it comes to getting him to talk, so I was exercising his speech abilities by having him repeat words after me. He was doing great, not all words were completely clear but he was really trying hard to say every word. Then I decided to change it up to see what else he could do, so I asked him what 2+2 is? His response was..."getout" all one word run together and pointed to his door!! 😂😂😂 I guess he was tired of being quizzed! 😂😂😂 I will take it!!! He is expressing himself, which is awesome! If one of my other two kids had said that... they would have gotten "the look", you know the one! 😂😂😂
We have been pleasantly surprised by these changes, as we did not expect to see any changes so soon. There have been other things we have notice too, but unless I write them down right away, I am realizing I am forgetting all the "little" things we are noticing. I need to take out my cell phone and send myself voice memos so I don't forget. There are lots of little things!

Some people on the stem cell group mention not seeing any changes in their kids, and questioning why the cell work for some kids and not is my theory on why that might be happening...I suspect the reason we are seeing changes so soon is because Brady's body was "ready" to receive the cells. We have been gluten free since January 2011. Plus we eat very clean, and try to limit his sugar as much as we can. We also make all of our own cleaning products, and use essential oils instead of medicines when he has any illnesses. We try to give him magnesium baths with vitamin C and essential oils at least once a week. Brady also takes vitamins, minerals, and antioxidant supplements everyday. We do all these things in an effort to limit and or combat Brady's exposure to as many environmental toxin as we possibly can.

In the spring of 2016, as allergy season was kicking in, Brady started to be willing to take pills. I decided to try to get him to try to swallow a tiny Claritin pill since the pollens we bothering him pretty bad that spring. Normally I do not like giving him ANY medicines, but that spring was particularly bad for him. We were thrilled that he caught on and swallowed the pill because we had tried supplements that our DAN doctor had recommended in liquid form, but most of the time we had to fight to get Brady take any of the liquid supplements So now that Brady was willing to take pills, we have able to get the recommended supplements in him on a regular basis without a struggle!

Please note: In addition to being a registered nurse, I have also studied to become an aroma therapist, I did this because if used improperly essential oils can cause more harm then good since they are so potent. I wanted to make sure I knew how to use essential oils safely for Brady So, please if you want to use essential oils for your kiddo...make sure you seek the advise of someone who has studied how to use oils properly. There is a ton of bloggers out there who improperly advise people on the use of oils and our kids are WAY more sensitive to everything in their environment.
Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed healthcare provider. Any recommendations are for educational purposes only and are believed to be effective. However, since USE of any information provided herein by others is beyond the control of Michelle Bacon, RN, no expressed or implied guarantee as to the effectiveness of this information can be given nor liability taken.

Thursday, March 2, 2017

Past Facebook Updates

On March 2nd we posted this video on Facebook:
I had a breakthrough, and I am kicking myself for not thinking of something so simple sooner. We have really been trying for a long time to get Brady to say more then one word at a time. Then I had the idea to count off the words i want him to say on my fingers so he will have a visual cue that I am expecting more words from him. It goes like this...
I point to each one of my finger as I repeat the words I want him to say. "More Pizza Please" I do this like 4-5 times and then it is his turn. I point to the first finger and wait...then to the second finger and wait...then to the third finger and wait. Some times he needs reminders what of what word is expected next, but eventually he gets it and can say all three words with only me pointing to each finger.
Before this...if we said "More Pizza Please" hoping he will say all three words, he usually only repeats any one of the words, but never all three. Now with the visual prompt, he knows we need more words! 😀
Hope this video helps other parents to coax more words out at once.

Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed healthcare provider. Any recommendations are for educational purposes only and are believed to be effective. However, since USE of any information provided herein by others is beyond the control of Michelle Bacon, RN, no expressed or implied guarantee as to the effectiveness of this information can be given nor liability taken.

Thursday, July 24, 2014

SCHOOL for Mommy!!!!

I started school on Monday July 21, 2014!

Ya know how I have been focusing on all things natural..and diet changes for Brady and the whole family?? Well, I decided to go back to school and get a degree in complementary alternative medicine! With an aromatherapy specialty! 

My intro to the class included this little tid bit about me:
My journey into everything natural started in 2009 when my oldest son (then 2 and 1/2) was diagnosed with autism. Since then my research into why this happened and how I can help him overcome his disability has lead me back to grass roots basics at every turn. Our latest SUCCESSFUL natural endeavor has been in the use of essential oils in his therapy. Let me just say that EOs have been a God send! His behaviors and moods have changed FOR THE BETTER! He sleeps better at night and wakes up less crabby! Of course, who doesn't wake up a little crabby! Me included until I have my coffee. (**Sigh** it is the one vise I have a hard time giving up even though I know it is not good for me.) I wish that Aromatherapy was not called Aromatherapy. Because I am sure just like I many people assume it is all just about smells...not science. Think about this...all medicine of today is based on the plant medicine of the past. EOs are the most purest and most potent form of those plants. You can use EOs for almost everything! From easing fevers, tummy aches, and earaches, changing your moods, helping you sleep, to skin care products and cleaning your house. All NATURAL! There is not a day that goes by now (actually several times a day) that I do not reach for one of the little brown bottles in my arsenal, or one of my own personal blends! LOVE EOs!! I can't wait to learn even more!! When I did a search for RAs in my area (a medical community of over 30,000 employees) I was shocked to find only ONE RA in Rochester. Well, I am excited to say that I am here to change that! :-)

P.S. RA = Registered Aromatherapists. RAs are someone who has passed an exam to be registered...much like my nursing board exam before I could practice nursing. 

BEWARE of anyone who practices aromatherapy, or gives advise WITHOUT being registered. Anyone can learn and then tell you about essential oils. Some certification programs last as little as one weekend. Shocking, I know!

But only TRUE RAs have passed the exam that includes EO safety. 
ALL RAs are listed with the Aromatherapy Registration Council.
To find a RA in your area, CLICK HERE
EOs are EXTREMELY potent. EO use without the advisement of a RA should be limited. 
NEVER apply an undiluted (directly out of the bottle) EO to your or anyone else's skin! 

I will try to post on "Hope 4 Brady" all the natural things I research for our families well stay tuned!

Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed healthcare provider.
Any recommendations are for educational purposes only and are believed to be effective. However, since USE of any information provided herein by others is beyond the control of Michelle Bacon, RN, no expressed or implied guarantee as to the effectiveness of this information can be given nor liability taken.

Monday, January 20, 2014

Hope For Brady Intro

I have been blogging for quite some time, but on another subject.

Until today I have blogged only about digital scrapbooking. That has been my passion, and my business as a digital scrap designer. While I do not plan on quitting that completely...I have been side tracked by my research and implementing some alternative therapies in hopes of recovery for my son Brady...from...deep breath...autism.

In March of 2010 when Brady was 2 and 1/2 years old he was diagnosed with autism.

Brady was a normal "physically" developing child. However neurologically...he was developmentally behind. Let me go back to the beginning...when Brady was 6 weeks old we took him in for his 1 month shots. I remember this specifically because I was feeling like a bad mommy for getting him in 2 weeks late for his 1 month check up. At this appointment Brady got his shots...and way too many in my opinion!! Brady got 2 shots in each leg...poor baby!

After the check up we took our tiny baby home and from that point on he was...different.

We gave him Tylenol for the discomfort and potential fever from the shots like every pediatrician recommends after a baby gets shots. Hindsight is 20/20...if only I knew then what I know now!! ONE, he would not have gotten so many shots all at once...maybe not even at all until he was older...and TWO; I for sure would not have given him TYLENOL to further tax his liver at clearing the stupid toxins...WE just injected him with!!

Anyhoo...even me, an educated RN...took my baby in to get his shots as recommended by 90% of doctors in the US. I did not know there was the potential for this sort of harm...harm that he can potentially never recover from.

In the days and weeks that followed that fateful visit to our doctor...we THOUGHT our baby had developed "colic". Every time we tried to lay Brady down in his crib he would SCREAM the worst blood curdling screams of a baby in severe pain...we treated him with gas drops and you guessed it....more Tylenol. Hindsight again...when I look back now, I don't think he had colic at all...I think his brain was swollen...and when we laid him flat in his crib...the pain in his head was excruciating. 

Brady also had welts in this legs the size of shooter size marbles for almost a YEAR after his first shots. Because of the welts reaction to the shots...we went to our family doctor and asked if we should hold off on any other shots until Brady was older. (Little did we know that the damage was MUCH worse then a few welts)!! Since he was not in daycare...she agreed that holding off would be best. Hubby and I decided to hold off on all shots until Brady's 2nd Birthday. THANK GOD we did!

Around Brady's 2nd birthday we had been wrestling with the decision of whether or not to start up with his vaccines again. Hubby and I decided against starting them back up...due to the lack of language development in Brady. We did not want to add insult to injury!!

By the time Brady was 2 and 1/2 and still not talking...Hubby was really getting concerned.

Brady had met all of his "physical" milestones...rolling over...crawling...walking...etc.

But he was very much social development. He did not respond to his name, make eye contact...and words that he had picked up at around a year..."bye bye" "ma ma" 

"da da" had disappeared by age 2! Hubby insisted that something was wrong...I was in denial...I was convinced Brady was fine...he just wasn't talking because he was a boy...he was the second child...and we all know boys are a little slower when it comes to social development.

We were referred to the developmental pediatrics department at Mayo. After a battery of tests...the results confirmed our worst fears...Brady was autistic!! OMG!!

Shortly after that is when we put it all together...I don't think Brady ever had colic...we think he had a severe, and not JUST a local (the welts) reaction to the immunizations when he was 6 weeks old!!

We have one doctor that when we asked him if he thinks the shots when Brady was 6 weeks old caused his autism, said this: "People may be genetically predisposed to be susceptible to becoming autistic. Consider genetics to be the metaphoric "gun" and the shots may have been the "trigger" that fired the gun".

WE pulled the trigger! We gave him the shots...part of me feels so guilty for that. But then the logical part of me tries to tell myself that he was predisposed...there may have been other triggers in life...and this may have happened any way. We live in a very TOXIC world...and our government does not educate us...warn us or PROTECT US!!

It is not until something like this happens that we go on our OWN search for answers. Everyone knows the symbol of autism is the puzzle piece. This diagnosis is very complex...and solving the puzzle is even more complex.

This blog will be my record of our journey into solving the riddle...and I pray to God...helping to recover our son from autism.

It will be my place to share with other struggling parents things we have tried...things we are looking into...and things we have tried but seemed to have no effect.


to the 


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Sunday, September 1, 2013

Back to School Soon!

This post has been copied from our "Care Page"
Posted Sep 1, 2013 9:30pm

I am sorry that I have been MIA lately…with summer coming to an end…and trying to spend time with the little ones before they head back to school, I have been very busy. Piper heads back to school on Tuesday, Hayden back to pre school on Thursday…and we made the very difficult decision to pull Brady OUT of public school and have him at the Autism center full time. In his progress meeting at the end of school last year the "officials" decided it was time for Brady to go on to kindergarden. Not because he was ready…but, age wise he could no longer stay in the pre school class with the teacher we LOVE, but rather HAD to move on to kindergarden. Mentally he is still like 3-4 years old regardless of his chronological age! So, Steve and I decided to have him full time 40 hours a week at the autism center where he gets intense one on one therapy 40 hours a week. We decided it would be better for him, and of course we still hold out hope that one day he will be "normal" and more importantly indistinguishable from his peers. We know that kids can be very cruel…and we did not want him labeled by his peers as the "retarded" kid. I HATE that word!! But, kids can be very mean and they don't forget. SO, our hope is…someday he will be normal enough (we all have our quirks…and that is OK) but we hope for potty trained, talking, not in need of a one on one PARA 24/7, and very few meltdowns…then at least he could pass for normal as far as his peers are concerned. If not…that is OK too…but we feel we needed to TRY to protect him from being teased. Then if someday he IS ready…he will just be the "new kid" and no one will be the wiser!
Another exciting development is, after 3 long years on the autism assist dog waiting list…Brady's name has finally come up!!! This will make life so much easier for our family! Right now we can not even go out our front door to visit with the neighbors, and their kids with out Brady trying to run off. It is very stressful! Once he has the dog, he will be tethered to the dog, and the dog will be trained to just lay down if Brady tries to run away. This comes at a very good time…since Brady is getting almost too big to ride in carts at the store anymore. With the dog…he won't be able to bolt in the store either!!
Diet update…Our family went gluten free as of January 1st, although it is hard to see changes since we are with Brady every day…here are some things I have noticed. Brady hardly EVER hits himself anymore. (that could also be a combo of the diet, and being able to communicate better) He has better eye contact. (not normal….but better) He makes more attempts at verbal communication, and says about 50 words VERY clearly. He still has word finding difficulty when trying to use spontaneous (not repeated) language. But like Steve says….who cares if it is one thing or a combination of many things that helps him get better…as long as he continues to make improvements…we will keep with the changes we have made. We also make every effort to buy organic when we can. We buy dairy products without hormones, and try to eliminate as many GMO's from our diet as humanly possible! We have not been brave enough to make the leap to dairy free yet!!
Potty training…Brady now stays "dry" most days. We set a timer for every one and 1/2 hours and we take him. There have even been a couple times he has pooped on the potty! Right now we are more trained then he is but we feel he "gets it"….cuz we put real underwear under his training pants, and he does NOT like it when he is wet…so he has only wet like once since we started doing that…except when he poops, then he wets too. But…it is coming along!! Slowly but surely! Funny how when you have "normal" kids how all those milestones just seem, well, "normal", and people who have "normal" kids can take it all for granted.

Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed healthcare provider. Any recommendations are for educational purposes only and are believed to be effective. However, since USE of any information provided herein by others is beyond the control of Michelle Bacon, RN, no expressed or implied guarantee as to the effectiveness of this information can be given nor liability taken.

Tuesday, January 8, 2013

Organic, WHOLE foods!

This post has been copied from our "Care Page"
Posted Jan 8, 2013 9:28pm

Thanks everyone for all the support! It has been exactly one week today since going gluten free. Here are a few things I have learned and more importantly here is how I feel...I FEEL AWESOME! I have a ton more energy...sure it is still hard to get out of bed in the morning...but once I am up I do not feel like going back to bed. I have tons of energy to do more stuff around the house. Good thing cuz I am going to have to cook a lot more from scratch! We are trying to buy almost everything organic to get away from all the GMO food! We have not tried Rice milk yet...I have some in the pantry...but we choose coconut milk for the nutritional value. Rice milk has very little nutritional goodness. I have not tried almond milk either, but I have heard that it is good so I may try that! I have some friends who have expressed their concerns about coconut oil due to the saturated fat content, and here is how I feel about that: does coconut milk and oil have more saturated fat...YES, but it is a medium chain fat which actually boosts metabolism, it has a low glycemic index, and actually helps you lose weight due to the increase in metabolism. Because it is a MCFA instead of a LCFA (long chain fatty acid)it is actually better for you than any other "fat" or oil out there because of the way your body uses it. It has a ton medicinal qualities that aid in healing almost every body system. I suspect anyone who had a "negative" health issue from coconut products did not change other aspects of their diet as well. Such as eating other junk foods...etc. It probably had nothing to do with the coconut products. If you are curious about coconut oil it...Google it or PM me and I will give you more info. There is a ton of research out there that also supports giving it to children with autism as a supplement for brain health. It also helps keep candida at bay which often plagues kiddos with autism. Think about it...when your kids are born, and when they move on from either formula or breast milk...what does the pediatrician recommend for milk? FULL FAT milk!! It is the best for growing developing brains!! From now on we will use only coconut oil and olive oil. Lesa, one of my "Ausome" Mom friends, suggested we try Daiya vegan cheese. I have tried Daiya and eeewwww, we did not like it. I just ordered another vegan cheese called we will see! I will find a cheese substitute!! Oh, and I am down 6 pounds!!! :-) PLUS, and this should probably be at the top of this post...but Brady's teachers report he is less hyper active and more verbal. When I say verbal...I mean he is making more "attempts" at verbalizations. He is also making more eye contact with teachers and his peers then he did a week ago. Coincidence? Maybe...only time will tell! I will keep you posted!!

Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed healthcare provider. Any recommendations are for educational purposes only and are believed to be effective. However, since USE of any information provided herein by others is beyond the control of Michelle Bacon, RN, no expressed or implied guarantee as to the effectiveness of this information can be given nor liability taken.