Hope 4 Brady

Wednesday, April 26, 2017

Changes Noticed, 1 Week Post Stem Cell Treatment.

Here are a few interactions that are improvements since our first stem cell treatment:

Brady came home from school and was hiding in his room, playing with his iPad under his covers and Daddy said: "Where's Brady" with no response...then Daddy said "Here I am"! and Brady pulled the covers back, grinned, and echoed "Here I am"! This is new because before cells, Brady might have only said "der-e-is" Before cells Brady often would approximate two or three words, but all run together to form one word. This time it was three distinct and CLEAR words! 😀

One day after school when Brady was coming into the house, daddy had Rocky (our dog) on the leash by the door since he had just been outside, and Brady came in and said "Rocky"! Brady usually does not acknowledge Rocky very often. He will play with him by throwing the ball for him. but I think sensory wise Rocky can be a little overwhelming for Brady. Rocky is a "Teddybear" (shih tzu bichon mix) and can get a little hyper sometimes. It was completely out of the norm for Brady to acknowledge him!

Another day after school when Brady was getting off the bus, daddy told him to say good bye to the bus driver. Normally this would mean Brady would keep walking forward towards the house and sort of do a half wave down low behind himself while still walking forward. This time Brady paused, turned, waved, and said "Bye"!

Thursday night we went into town (we live 8 miles from Rochester) to go grocery shopping. When we got home Piper and Hayden noticed a bunny in the back yard. Normally when we would call Brady over to show him the bunny...either he wouldn't be able to find where we were pointing, or he simply just didn't care. Tonight not only did he see the bunny and get excited...he said "Bunny" then he cupped his hands together and said "catch it"! and made a catching motion! It was super cute!
Also when we were out to eat we noticed him paying more attention to the people and the world around him. Being more "present" in our world rather then locked away in his own mind.

Friday morning while waiting for the bus, Brady said "count" then he said "10"...OK, that is different! Then he counted back from 10 to 1! That is totally new! I will have to ask his teacher if that is something they have been working on at school because we never knew he could do that!

Then last Friday afternoon (4/21) we got this e mail from his teacher:

Michelle and Steve,
I wanted to let you know that over the last couple of days, there is a noticeable difference in Brady. The most noticeable is his reactions. Things that have bothered him or agitated him in the past, he is more calmly responding to, if he responds at all. Transitions are smoother and his imaginative play is more shared with staff then to himself.
Just wanted to share some positive observations. There hasn't been a negative observation yet.
Thanks and have a great weekend!

Isn't that awesome!?!?
Is really nice that his teachers are noticing differences in him too! The validation from the school
means that the changes are REAL!! Not just our hopeful biased opinion that things are changing because we so badly want them to!!

Yay stem cells!!!!!!!!!

Here are some negative things we have noticed since our first stem cell treatment:
(Could be good depending on how you look at it)

Brady has been more tired in the morning (pretending to "snore" and says "tired" when we tell him it is time to get up) and seems to want to go to bed earlier then normal. Like actually verbalizing the word "sleep" and wanting to get into his jammies all on his own. That was new, usually he fights to NOT want to get jimmies on.

We were trying to get Brady ready for school the other morning and Brady wanted another piece of toast. Time was a factor and we weren't sure there would be enough time before the bus came to pick him up so daddy tried to move on and get Brady dressed, Brady fought getting dressed and actually tried to strip and get back into his jammies. Stripping is something he normally does not do. We are not sure if this is just because he is more tired or if he is starting to display some independent thought. Like he is expressing what HE wants and what HE wants to do.

To anyone considering stem cells...I know it can be a scary decision. There is a stem cell support group on Facebook and one autism mom was expressing worry, and fear about the decision to take their child for SCT...here is what I posted to her:

My husband and I were facing this exact same struggle only weeks ago before we went to Panama. I kept asking him if we were doing the right thing, right up to the day we left. I was apprehensive even during the week we were getting our infusions. I was so worried that we might be doing something that would make things worse. We already carry the guilt of injecting him with the recommended vaccinations that caused his initial injury. (That fact is not up for debate here, we know with certainty that the vaccines injured him after his first set of shots, our pediatrician even said we should hold off on the rest of his shots until he was older since he had such a severe reaction.)
Here is what my smart husband said; "We can do nothing, and nothing will change. If we do nothing the likelihood of Brady ending up in a group home someday when we are gone or too old to take care of him is 100%. "
"If we do this and he gets worse, the likelihood of him ending up in a group home someday when we are too old to take care of him or once we pass away is 100% "
"If we do this and he gets better, he has the chance of possibly being recovered, independent, and at the very least the quality of HIS life and the lives of all 5 of us (immediate family) will greatly improve. At that point the chance of him ending up in a group home someday?? unknown. "
That was enough for me! On April 10 we took him to Panama and he got 4 infusions for a total of 60 million cells. Since that time we have seen many things we have never seen before! Right now my two sons are downstairs playing together! It brings tears to my eyes! Before cells Brady would hide in his room and only be interested in his iPad, or his movies. We would make multiple attempts every day to try and coax him out of his room to come and be with us. Since we've been home he's voluntarily coming out of his room to play with us and with his siblings! Plus, his verbal attempts, babbling an actual clear words has improved! This is only the beginning! We've only been home since April 16th, we can't wait to see what the next six months will bring! I hope this helps ease your mind even just a little, you are not alone! BIG HUG!!

Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed health care 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.

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 appointments 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 encouragement will help us all get through this difficult time. It is going to be a long road, and as the developmental 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 he 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 place...in 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 others...here 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.

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.

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 did...so 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 being...so 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 behind...in 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.

WELCOME

to the

HOPE FOR BRADY BLOG!!

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.

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...fast 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 Teese...so 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!!

Friday, January 4, 2013

Going Gluten FREE!

This post has been copied from our "Care Page"

Posted Jan 4, 2013 11:18pm

Hi all, have you missed me?
I have been so wrapped up in the holidays…and then on January 1st Brady and I went gluten free, soy free and for the most part we will try to eat almost completely organic! The rest of the family will be joining us as soon as the gluten products are gone from our pantry. We want to go casein free too…but for now, we love cheese too much! I can use unsweetened coconut milk for cooking…but I will miss having a big glass of ice cold milk. Brady doesn't like milk so he will be OK there. Coconut milk is good…and healthy, but I just can't even imagine drinking a huge glass of it. Adding it to my coffee in the place of cream…yes, but drinking it plain…not so much! Oh…yeah…coffee, well that is one of the things I am just not willing to give up!
I made this really yummy gluten free mac and cheese. The noodles were from Trader Joe's and they are a brown rice pasta. To tell you the truth if I did not know better…I would not have been able to taste the difference!! I fought going gluten free cuz I LOVE breads and pasta! But looks like I found an awesome substitute for the pasta!! Now, I need to find a good bread recipe! The Udi stuff leaves A LOT to be desired and missed about "real" bread! So as you can probably guess…I have been consumed and immersed in trying to make healthier food choices for our whole family!
This is a short post…have to get more recipe hunting done…we are going to Trader Joe's tomorrow…and I need to find a few good things to try and pick up all the ingredients!!

Saturday, November 10, 2012

A Lesson in Tolerance

This video is from November, 10 2012

It is funny, before "autism" I remember seeing a child maybe 3 or 4 years old in Walmart. He still had a pacifier. I thought to myself...what kind of parent lets their child still have a pacifier at that age?? MY BAD!

You never know what kind of situation that family may be facing, and why that child is still allowed a pacifier. Not that autism is an excuse to keep a pacifier past a certain age...but still it is a lesson in tolerance, acceptance and above all not to judge the actions or in-action of others until you have walked a mile in their shoes!

This reminds me of another incident...ha ha ha, also happened to be at Walmart...

This was when Brady was 7 and still in diapers. In MN, if you have a disabled child, and they are on the TEFRA program (medical assistance for children) the TEFRA will cover the cost of things the child needs, that a typical child his or her age would not need. Such as diapers.

Any hoo...as I am waiting at the pharmacy counter to pick up our monthly allotment of diapers, some B*&%H in the line behind me whispers to the guy behind her..."What kind of insurance pays for diapers"??

OH NO SHE DIDN'T!!

I whipped around, shot her a look and said...

"I have a 7 year old disabled child at home who is still in diapers, if you would like to trade places with me and get "free" diapers...BE MY GUEST"!

As you can guess...she had NOTHING to say after that!

Just goes to show...no one has the right to judge anyone, just one of the MANY things Brady has taught me. 😀

Someday I will tell you the story about WHY we have to pay for TEFRA in addition to paying for the the insurance provided by our employer. We both work for Mayo Clinic by the way...you would think they would have the best insurance in the world, since they are known all over the world as one of the best clinics/hospitals in the world...right? WRONG! A story for another day.

Disclaimer: The information on this blog is NOT intended to take the place of diagnosis and treatment by a qualified licensed health care 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.

Wednesday, September 19, 2012

A new school year!

This post has been copied from our "Care Page"
Posted Sep 19, 2012 7:05pm

Well, the new school year is under way. The kids, Steve, and I already have one illness under our belts for the year!
Hayden started pre school!! He was assessed by our favorite pre school teacher…"Ruthie" and we found out he qualifies for early intervention too. Don't worry…it is not a bad thing, we are really excited about it. He qualifies because he is extremely shy, and although he can speak in full sentences…his enunciation needs a little help. Hayden had to need help in at least 2 areas of development in order to get into the early intervention program and into Ruthie's room. She feels that with just a little help he will be right on track!! He likely would have been just fine anyway…even without any help…but we are so excited he gets to "play" with Ruthie, and have a little socialization with peers because he has never had that since we do not use daycare. She said that if we assessed him again after a few months he probably would not even qualify, because he is so darn smart…but since he qualifies initially…he can be in the program until he starts kindergarten! He already loves it and had very little to no separation anxiety due to the fact that Ruthie's room if filled with toys!! She has tons of tractors and trucks!! He was in heaven!! Plus it helped that he was already so familiar and comfortable with Ruthie since she has been coming to our house all summer to work with Brady in his therapy room. Hayden even likes pre school so much that on Monday and Tuesday when we told him he could not go to Ruthie's because he was sick, he hung his poor little head and started to cry…poor little guy!
Piper is doing great too, and getting TALL, and her hair is still beautiful and down to her bottom. She loves playing in our neighborhood with all of her friends, and riding her bike and scooter! Piper loves art, and recess! Math and spelling…not so much!! Big surprise! Well at least we know she is completely normal!! ;o)
Brady has been working very hard in his new therapy room in our basement all summer. We have had some people come in from a respite group that I have trained to do the son rise program. Working with them has been helpful as it frees Steve and I up for a couple hours 2-3 times a week to get some stuff done around the house, and spend some quality time with Hayden and Piper. I am not sure how we will proceed with that into the next year because they are very expensive and to this point have not been as consistent as far as "regular" staff. It seems like every time they come it is a different person. Ideally I had requested it be only like 2 or maybe 3 different people so it would allow for some sort of routine for Brady. They do have 2-3 people but they rotate on a daily basis that he just seems more irritated by the inconsistency then anything. I understand that part of trying to overcome the rigidness of the autistic tendencies would be to allow this…but in my opinion if something is not broke…don't fix it. Right now what is working is the program we are running…and part of that still allows for some of his "routine". The words are coming and that is what is important. We need him to be able to first communicate. We will deal with all the other stuff later…when he can UNDERSTAND what we are telling him. I have considered putting an ad out there trying to find a college student who is interested in special ed or maybe social work to come in a few nights a week and do the son rise program with Brady. I would love to do it myself and would if not for the other two kids. I can't very well spend 2-3 hours in the therapy room with Brady and leave the other two on their own. The way the program works, is you need to be able to give undivided attention to Brady in order to bring him out of autism.
UUUUGH!! Every time I get down or discouraged I have to remind myself that things could always be worse. Brady is a cuddly loving happy little guy who everyone who knows him, loves him…and we need to be patient, and help him through this. We will get there and he IS making progress…I am just so anxious to be a normal family who does normal stuff…like go camping…or family vacations…like dare to dream…Disney World. I SOOO want to take my kids there someday. I want Brady to understand that we ride, we get off…and we move on. Instead of meltdowns and him hitting himself when it is time to get off a ride. Trust me we have tried…not Disney…but we took him to the Mall of America's Nickelodeon Universe…it was not ideal…and we had plenty of people staring and wondering what was wrong with our lil man. I will say this though…after the very first ride, when I had to explain to the gal running the ride why my son had a death grip on the bars of the car he had just had the ride of his life in…and was screaming so loud I am sure the whole city of Bloomington heard him, that I was sorry for the delay, and that my son was autistic, to her credit, she immediately called a manager over who brought with her a booklet that she signed for us that would allow Brady be able to enter through the handicapped entrance to each ride and to not have to wait in line…AND he could go twice on each ride without having to get off!! For once his disability was less of a curse, and more of a bonus for miss Piper!! She got to reap the benefit too!! She was his riding buddy!! She loved it!! It was hard between walking to each ride, because he would get really upset about leaving the previous ride, and he just never did quite "get" the fact that we were going on a different ride next. ***sigh*** But, I guess we have to start somewhere right?? Better to try that then to try to go to Disney and have either Steve or I take turns with Brady in the hotel because he just gets too overwhelmed…right? WOW…that went off in a whole other direction from back to school…huh? Well, these are just some of the things we face everyday. People with 2-3 or even one neuro typical child have no idea how blessed they are to be "normal". I love Brady, he is a very special child, but would I change things if I could…you bet! Would I trade him for another child…not our Brady, to make the autism go away?…not for a million dollars! When Brady was younger…maybe like 18 months or so, we would be riding in the car and Brady would BURST out in a giggle…for no reason at all. Steve and I would look at each other puzzled like what the heck did he find so funny?? Steve would tease and say "That's my "special" boy" at that time we had no idea how true those words would be. Brady IS special…and it is our job as his parents to help him be all he can be…no matter how hard, and bumpy the road may be.
Any hoo...Keep us in your thoughts, and even though we may be a little wrapped up in "our own world" here, we most definitely wish we could keep in touch better, spend more time with all of our friends and family, and we appreciate and love all of you dearly!

Wednesday, March 7, 2012

Progress!

This post has been copied from our "Care Page"
Posted Mar 7, 2012 11:13pm

Well Ruthie and her son Michael have been working with Brady after school for about 2 months now. He spends about 10 hours a week, one on one with one of them in his room, without anyone else interrupting. We let them go into his room and then lock the door so Piper and Hayden can not interrupt. I am excited to report we have gone from only a few words (Mom, nigh nigh, and pop…pop as in soda pop) to about 20 word approximations.
Mom, pop, Cut, Key, Up, Down, Hide, Chase, tttt for tickle, sisses for glasses, eye for ice (as in ice cream), go, you, nigh nigh, da for dad, he is making the "w" sound for water, ball, ssss for cereal, and a few more. Steve and I do not get to hear the words as often as Michael and Ruthie get to, but I think it is because he has US so trained! We are also hearing a lot more babbling, like you would hear from a baby as they learn to talk. The other teachers at Brady's pre school can not believe the progress he is making in such a short time, and it is ALL because of the Son Rise principals we are using with Brady. I also think that due to this "joining" principal Brady's eye contact has increased a ton!! This is what is working for Brady. In fact he loves his "therapy" time so much that when he gets home from pre school he can not wait to set up his room with the therapy toys! Until the basement room is done we are using Brady's bedroom for his therapy. Each night we bring out all the toys, the little work table and chairs, and his small little trampoline so he can go to bed at night…but first thing he does when he gets home is bring it all back into his room!! Then when Ruthie arrives he knows it is time to "play", after all he doesn't realize it is therapy! It was so cute tonight when Ruthie got here…we usually talk a little about how his day at school went…or other little bits of info…and tonight when Ruthie got to his room, I was still talking to her…he pulled her into his room and shut the door on me!! He knew it was HIS play time!!
I still sometimes wonder if he "gets" what I am saying to him…but then there are other times when I insist that "I know you know what I am saying!" and he gives me this sly little grin!! Then I tell him he is a stinker!! and he giggles. Not sure if it is the playful tone…or if he really does understand and is just playing possum!!
We still have issues with tantrums…especially if Hayden touches ANYTHING Brady is playing with. Many times he will not allow Hayden to play with him. It hurts to see Hayden wanting to play with his brother and Brady getting so mad at him. I HOPE that gets better! He will allow Piper to play with him and his toys…but NOT Hayden. The only time Brady will play with Hayden is when toys are not involved. Even that has gotten better. He used to only play with Hayden on HIS terms…like he would play chase with Hayden…but ONLY if Hayden chases him. Well now he ALSO chases Hayden back!! That is exciting because it shows he is more aware of the people around him….he is learning it is FUN to be with his family…and with PEOPLE!!! I can NOT wait to see how much progress he makes in the months before his 5th Birthday!!

Tuesday, December 20, 2011

Meeting with our volunteers.

This post has been copied from our "Care Page"
Posted Dec 20, 2011 10:09pm

Tomorrow night we will meet with or first choice for a volunteer in Brady's Son Rise program! Ruthie!!! Ruthie is Brady's pre school teacher for the early childhood education program, and both Steve and I just adore her!! She is the epitome of Energy, Enthusiasm, and Excitement!! Or "the 3 E's" like the program teaches!! The very first time I met Ruthie, I stopped by her pre school room and introduced myself as the mother of "Brady" a 2 and 3/4 year old (at that time) boy who had just been diagnosed with autism. I proceeded to tell her that he would soon be joining her class. Ruthie, unlike most people who you meet for the first time, GRABBED me and gave me a huge hug!!! I remember thinking….uuuh, ohhh,…OK….and "kind of" hugged her back…."awkward" most people when they meet for the first time shake hands….not Ruthie!! That is not her style, and BOY are we glad she is the way she is!!!… WE JUST LOVE HER!!! AND SHE LOVES BRADY!! Anyway, The night before the volunteer talk/lecture at the Son Rise conference I attended Dec 5th through the 9th, I had made a list of potential people I could talk to about being a volunteer in our Son Rise program. I was thinking how in the world am I going to find people who would be willing to do this for FREE??? The "lecture" was so great!! They told us all about how to go about "selecting" volunteers, that after that lecture I found myself crossing people off that list, and narrowing it down to a select few that I really wanted to give the "gift" to!! I say gift, because the way they (the Son Rise teachers) talked about being a Son Rise volunteer…it really is a gift to be part of something so incredible and special!! You are "allowing" the special people in your child's life to be a part of something EXTREMELY amazing!! They read a letter from a MD who had volunteered in a child's program that he never knew before he choose to volunteer. He had responded to a flyer he had seen posted at his local health food store. He said the principals he learned in the program (that the parents of this child taught him) carried over into EVERY aspect of his life! He said he was so grateful to be a part of this special program that the "payment" of the experience and self growth he got from being a volunteer, was priceless, and worth WAY more then any salary he could have earned! He felt more fulfilled in his own life by becoming a special part of the child's life he helped recover from autism!! They also talk about picking people who you would pick, if you COULD pick your family members. Essentially they will be members of your "Son Rise" family by choice. When your child no longer "needs" the program…the volunteers will be like surrogate parents to your child. They will marvel at all of the "normal" milestones Brady will reach…knowing how unlikely it would have been for him to achieve with out them!! They taught me that our volunteers will commit to Brady, they will surround him, and love him, and help guide him into our world, and out of the exclusiveness of the world he has created for himself. If you don't already know...Autistic kids get very easily overstimulated, so in defense they shut out the rest of the world, and all of it's stimulus, because when they shut everything out, the world they create inside themselves is a safe happy place. We need to help convince them that our world is fun safe and happy, and WE want them to join us there! So in order to do that….we have to FIRST join them in their world so we can lovingly guide them into ours!! SO, because of ALL of that I found myself carefully re-considering who I would give our Son Rise "gift" to!! Ruthie still tops that list!! If we can teach her the Son Rise principals, and she helps us guide Brady lovingly into our world…just think after we recover Brady…how many other families she can help!! It is what she does!! She teaches special needs kids! Wouldn't it be awesome if after a couple years in Rutihies class those "special" kids would no longer be "special" in a need extra help way?? They would be especially "typical"!!! It will be like a ripple in a pond! I feel so excited at the thought that!! Maybe one day, because of Brady, our family, and volunteers like Ruthie….many more kids could potentially reach their FULL potential!! and be "typical" children!!
OH, and by the way the people who taught the the Son Rise lectures, at the conference I went to have all personally helped MANY children…starting with their OWN family!! Bryn…who together with her parents helped her baby brother Raun, THE VERY FIRST Son Rise participant FULLY recover from his SEVERE autism!! He was WAY worse and way more "in his own world" then Brady is!! So we are already 5 steps ahead!! THEN, Bryn along with her husband William, who is also one of the Son Rise teachers, FULLY recovered their own adopted daughter Jade!!
So it is not "too good to be true" It is REAL!! If you read about my own VERY FIRST session working with Brady in this manner, you have to get the chills!! If you have not read about it yet…go back an update in this care page and you can read of mine and Brady's successes already in using this principal!
The SECRET they teach?? SIMPLE!!
Love, and REALLY, REALLY play with your child! ONE ON ONE…just you and your child…NO TV, NO electronic gadgets…just you and him…anyone remember imagination?? Back in the day when we all had less, and played just fine, using our imaginations!!
Accept him for who he is, and love him unconditionally!!
Who wouldn't LOVE BRADY? RIGHT??
And another FYI: Raun, the very 1st Son Rise child is now a graduate from Brown University, with a degree in Biomedical Ethics!! AND He is the CEO of the Autism Treatment Center of America!! How is THAT for irony…to all the professionals who told his parents Barry and Samaria Kaufman to forget about him, to institutionalize him…that he would never be more then a mute, helpless, mentally retarded child with an IQ of less then 30!! :oP
We are going to build an official Son Rise playroom in the basement, since our basement is partially unfinished. Our goal is to be doing at least 25 hours of in home one on one time with Brady in the "playroom" each week! And since we don't want the other kiddos to feel left out of the playtime, we have a plan to do the Son Rise principal with the other 2 too! Piper will get 7 hours one on one "therapy" hours a week in the playroom, and Hayden will get 12 hours a week of one on one time with either Steve or I. During the week, we will have helpers/volunteers come in and do the therapy with Brady from 3-5:30, so we can do homework with Piper, cook dinner, etc. We are also hoping to have family come spend time with Piper and Hayden on the weekends so Steve and I can spend a lot of one on one time with Brady in the playroom on the weekends.
Our goal is to be doing a full time therapy routine starting after the first of the year!
That means Brady will be one very busy little boy!! BUSY at play!!
M-F from 9am until 11:45 he will continue to go to the Rochester Center for Autism, then from 12noon until 2:30 he will be with Ruthie at school in the Byron public school early childhood program, and then from 3pm to 5:30 he will be one on one at home in therapy with either Steve, myself, or one of Brady's volunteers! TOGETHER we WILL "find" him!!
I BELIEVE!!!!

Thursday, December 15, 2011

Son Rise Program

This post has been copied from our "Care Page"
Posted Dec 15, 2011 1:24am

On August 29th 2011 I made a call that would change my life, my entire families lives, and and most importantly BRADY'S life FOREVER!!
You all know that Brady is a happy, loving, playful, cuddly, handsome, 4 year old little boy who also has autism, and at this point is non verbal. When I made a call to the Autism Treatment Center Of America…I learned that he did not have to keep the last 2 labels on that list!!
Brady did not have to always be known as a non verbal, autistic boy!!
I had found a miracle!!
The solution??!!
SIMPLE!!
Love and PLAY with your child!
Accept him for who he is and love him unconditionally!!

In the days and weeks that followed that initial call, we began to apply the basic principals of the "Son Rise" program!!
During one of our very first sessions with Brady, and with in 1 hour and a half I had reached my son!! Brady loves to run in a circle around his room and jump on his bed. Brady's bed is on the floor…to prevent injuries from a bed frame. Any way…I "joined" him in this activity. At first he was a bit surprised…and really took note of me in "his world". He made lots of eye contact with me where before there had been essentially none. Now, in his previously exclusive game he was allowing ME to take a turn!! I would copy him and run around the room and jump on his bed…then he would go…then he would wait for me to take my turn!! It was soooo cool! After about an hour of that…I was exhausted!! So I laid flat on my back on his floor looking up at the ceiling, and what did my smart boy do?? He laid down just like me!! He looked over at me and smiled a cute little grin with a look as if to say: "Hey MOM!! Where you been all my life?? Glad you could come play with me!!" I had reached him!! I was accepted into "his world"!! We were only an hour in to this very first session, and I decided to give him a little snack! Brady LOVES green grapes, and I had a whole bowl full! I decided to press my luck and go for some speech sounds. Brady had been making some beginning word sounds lately…like "mmm", "buh", "puh" and "ssss". I wanted to see if I could build on that! So I tried with one of his highest motivators!! FOOD!! I held each grape in front of my mouth so he could see me form the word, and enunciated the word "MOM"…I kept getting "muh"…BUT….by the time we got to the last few grapes…he said the WHOLE WORD!! "MOM" I could NOT believe it!!! At that point I KNEW I had to get to the Start Up session for the "Son Rise" program…and I could not get there fast enough!!
I went to the 5 day program from December 5th through the 9th of 2011!!
It was the best thing I EVER did!!
Steve goes to the Start Up in February!!
We could not both go at the same time so someone could be here for the kiddos.
If you, or someone you know, has a child with Autism or ANY other learning disability…I HIGHLY recommend this program!! If you are interested AT ALL…you owe it to yourself and your child to at least check it out!! You WON'T be sorry! I promise!!
If you are interested I can even get you a discount on the program cost for referring you!

If you want to view the AMAZING information about the "Son Rise" program, please follow this link: http://www.autismtreatmentcenter.org/

By January 1st we plan on finishing our official "Son Rise" playroom and working 25 hours a week one on one with Brady in his playroom!! Don't worry though…Piper and Brady will get their one on one time in the playroom too!! It is going to be so good for all of us!!

Sunday, June 19, 2011

We did it!

This post has been copied from our "Care Page"
Posted Jun 19, 2011 6:42am

Well guys...we did it!! We got Brady his iPad! Thanks to everyone who contributed to the design of the "Hope For Brady" kit, and to all who purchased either the Hope For Brady MEGA kit or the BIG Bundle...we raised almost enough money to fully fund Brady's iPad!
Brady has been amazing with how quickly he picked up using the iPad his favorite app is this neat little puzzle app we picked up for free. I was amazed when he started doing it, at how quickly he can solve each puzzle! He has REALLY taken to the iPad. There are quite a few other learning apps we have put on the iPad. He has his favorites and knows them by their picture...he swishes through the pages like a pro to find the ones he wants to do! The animal puzzle one is his favorite, but he also really likes another "puzzle" one where there is one of those stackable ring things, where you have to stack the rings by size with the largest at the bottom. he just loves it!
Another exciting thing is, he has been making more consonant sounds, and his speech therapist is very encouraged by this. She feels that even though at this time, he has the verbal skills of a 12 month old, that with the basic sounds he IS making, and with the help of the iPad...she thinks that he eventually will be able to speak!

Brady's speech therapist has asked us to load a bunch of real life pictures into the speech app on his iPad. So, over the last couple of weeks I have been snagging all sorts of real life images from google images for the speech app on Brady's iPad. Brady loves Cherrios, so, one of the pictures loaded was a picture of a Cherrios box. In this app when I load a picture, it allows you to type what the picture is, so I typed "Cherrios", I did this for many of Bradys favorite things. Then if Brady touches the picture of the Cherrios, the app will say "Cherrios". I also made all of the images I collected into 2 inch by 2 inch picture cards, for Brady to use as PECS cards. PECS is a picture exchange system that is used by some non verbal childern. It is what Brady has been using in the early childhood program at the Byron pre school, so it is what he is used to. It is basically the same concept that the iPad will do for him. But the iPad will hold hundreds of the images and SPEAKS the words for him. This way we can use the cards and the iPad at the same time with the same exact picture to show him what we want him to do is the same concept. Eventually we won't need to use the cards at all and will just use the iPad.
Anyway, the other night after I had loaded several real life pictures of Brady's favorite snack foods, I had to try it out. So on the one screen I made for him I put a picture of the brand of string cheese we get, a picture of the Sun Maid raisin box, along with pictures of a doughnut, Brady's favorite yogurt, and butterscotch pudding. I was very curious to see what Brady would do. Brady loves string cheese so that is what I tried first. I pulled out the string cheese and Brady got excited. I asked Brady what he wanted, and pointed to the pictures on the iPad, and then I only gave Brady a piece of string cheese if he asked for it by pushing the correct button out of the 5 pictures...and HE DID IT!! Over and over again with each piece of string cheese I pulled off!! Then we had raisins, another favorite snack...and he did the same thing with the raisins!! Then after the snacks were all gone, of course he wanted to play with all the buttons...BUT WOW!! So very exciting!!

Wednesday, April 27, 2011

Almost There!

This post has been copied from our "Care Page"
Posted Apr 27, 2011 2:00am

Well we have had project "Hope For Brady" live and available for sale since the beginning of the month. We are about 72% of the way there to earning ALL of the funds needed to get Brady his iPad, and the program proloquo2go!! I am amazed the project has done so well!! With the way it sold in the beginning I thought for SURE we would get him his iPad before the month was out. But, sales on the kit have slowed way down. If you would like to help us get there, you can buy the digital scrapbooking kit at Hope for Brady
Don't worry, if you don't know how to digital scrap, there is a tutorial that will have you scrapping like a pro in no time that is included in the purchase!! If you do decide to help us EARN Brady's iPad, THANK YOU in advance!! But if you just want to see some of the amazing pages people have made with the kit using some of Brady's therapy pictures go to this address: http://4mybabiesscraps.blogspot.com/p/hope-for-brady.html
Scroll all the way down on that page and you will see some pages people made for Brady!
These pages will be an awesome memory for him to look back on someday! Maybe, with hope, luck, and prayers, he will be able to actually SAY "thank you" to the wonderful people who donated their time and talent to this project, who helped him earn his iPad that helped him learn to talk!! 😀

Tuesday, March 15, 2011

Amazing Week!

This post has been copied from our "Care Page"
Posted Mar 15, 2011 3:21pm

I have meet some really amazing friends through a very special hobby. You have to read this whole update to see just what these amazing friends are willing to do for us! On March 8th I had a meeting with Brady's development team. As you all know, Brady was diagnosed at 2 and 1/2 years old with Autism. Brady is almost 4 now and still is unable to speak. At this meeting one of his therapists suggested getting Brady an i pad. She said there are MANY MANY apps out there designed specifically for kids with autism, to help them overcome their disabilities. One of the apps suggested would help Brady speak, as long as he can not. The app is very similar to a Dyna Vox but rather then costing $4-5000 like the Dyna Vox...the apps for speech are around $150-200. AND the i pad would serve multiple purposes rather then just communication. There are apps out there that will help exercise his little brain and hopefully get him caught up to his peers by the time he is ready for mainstream schooling.
Some of you might be aware of a little hobby of mine...digital scrapbooking! Well shortly after I lost my mom in February of 2008 I found this new world of digital scrapbooking. It could not have been more perfect. Mom was and amazing artist...and me? Well, not so much. BUT I have met some really sweet women who also have a passion for digital scrapbooking. Through them I have learned to channel what little creativity I do have into a medium that I feel I have gotten pretty good at! It started as a way for me to honor and feel closer to my mom who I lost way too early at the age of only 53 to breast cancer. Now this has evolved into something new and VERY SPECIAL!! When I did a little net surfing and found out that some of the apps Brady would need were in the range of $150-$200, not to mention what an i pad costs, so, I decided I was going to make a digital scrapbooking kit, an autism awareness kit, for Brady...to help him get these tools no matter what! I mentioned my plans to a couple of my design friends and BOOM!!! This little idea of mine has blossomed into something COMPLETELY AMAZING!! I have a list of nearly 20 design artists who have jumped at the chance to donate their time and talent to helping Brady get what he needs!! AND the list keeps growing!!! In the last week I have been completely overwhelmed, and brought to tears on more then one occasion, with all the generosity that has been displayed from women, some half way around the world, who have stepped up to help. It truly has been an AMAZING week!
On am more progressive note...
Brady has continued to learn sign language. He now has the following signs that he uses fairly regularly:
Cookie, Candy, Cracker, Wagon, Swing, Movie, Eat, Drink, Please, Cereal, Help, Mommy, and Daddy.
We are also working really hard on potty training...but as you can imagine this is difficult to teach when he does not understand simple verbal commands. It started as a chance trial run. We had been putting him on the potty frequently and giving him mini m&m's just to get him used to sitting on the potty...and one day, he went! Well everyone was so excited and he got so many treats that now it has turned into a more regular occurrence! (He had been working on this at the Autism Center too, and had gone a few times there, but the first time at home...we were so thrilled!) No BM's on the potty yet...but it will come. We still believe that once we break through that language barrier...his world will open up and honestly he will be just fine. But we just have not found the key that unlocks that door...YET! He will always have autism...we know that. It is part of WHO he is...in fact both Steve, and I feel that it is that part of him that has made him SOOOO Special to us!
EVERYTHING happens for a reason!
If you are interested, you will be able to buy this special scrapbooking kit by visiting my blog at 4mybabiesscraps.blogspot.com as of April 2nd. But come by the blog now and click on "Hope For Brady" at the top on the LEFT hand side of the blog, and you will see what some designers have already donated!! April 2nd is WORLD autism awareness day, and will be the day we will release for sale this very special project in honor of BRADY!! If you have never digi scrapped before...don't worry a couple of my friends are even making up tutorials on how to get started in this very rewarding pass time! See you soon!

Monday, July 19, 2010

RCA

This post has been copied from our "Care Page"
Posted Jul 19, 2010 2:19am

Well we have been at the Rochester Center for Autism for almost a month now. Brady's hardest thing still remains the separation thing. He is excited to go there. In fact there are times when we are at home and he will bring us his backpack and shoes. Which we assume means he wants to go there. But when it comes time to drop him off he is always trying to run for the door or cling to us when we are trying to drop him off. It is so hard to just turn from him and walk away when he is crying for us. They send home daily progress notes of the things he does each day, and on many of the notes they say he is signing more and more frequently but we do not see as much of that at home, or maybe we are not as in tuned to it as they are there at the center...I don't know. I just know that now that his 3rd Birthday has come and gone...and he is still not talking I get more and more worried every day. I worry about his quality of life. I worry about our quality of life. I worry about Piper and Hayden. Piper because she is "normal" and may suffer due to the things we can't do because of Brady. I worry about Hayden, who is developing normally to this point...but what if he were to start to regress like Brady did? Or if he is "normal" he will be in the same boat with Piper, limited by his brothers disability. We went to the Mall Of America the other day and put Brady on the rides for the first time. He had a BLAST, but, the entire day was a struggle. He had meltdowns every time it was time to get off of another ride. If we just had him to worry about, we might consider leaving to teach him that that behavior is unacceptable but then Piper suffers. Steve and I have talked about maybe having to separate our outings with the kids. Like one of us stays home with Brady where he can be happy playing with his toys or outside on the swing set, and the other one of us brings Piper and Hayden to the things that "normal" kids get to do. I hate this. When I had this perfect picture in my head of us, it was not one of a divided family. We decided to have a third child...hoping for another boy so that Brady would have a brother to play with. Now...who knows how things will be! UUUURRRRG! I just want so much for him to start talking. I think that once he can talk he can better learn to understand how to behave, and what is not acceptable. He will be able to communicate his wants and needs with out frustration, and then there will be hope for one big happy family.

Tuesday, June 15, 2010

Rochester Center for Autism

This post has been copied from our "Care Page"

Posted Jun 15, 2010 6:26am

Well we had our first day at the autism center on Monday 6/14. It was the first day of their summer schedule so it was very loud with all the excitement of all the kids. Brady is sensitive to sound and gets overwhelmed easily so that made the first part of our day there a little difficult. We met a couple of the therapists that will be on Brady's team. Mary was very nice and Brady seemed to like her. He played well with her. He also had Lisa and Kelly with him today. I am not sure how he felt about Lisa because he kept pushing her away and kind of hitting in her direction whenever she got too near or if she did something Brady did not like. Brady was able to transition from activity to activity fairly well. Which is something that is good since some kids with autism have difficulty with changing activities. I stayed at the center the whole time he was there from 9am to 11:30am and I was able to back off and sneak away into the background with out Brady really noticing. He went on playing with the therapists, and seemed to have a good time. We had a difficult time with the whole separation thing when he started at the Pre School in Byron too, but hopefully that experience has de sensitized him a little bit and it will not take him as long to adjust to the center. One exciting note about the Byron program, despite the fact that it is done for the summer...we found out that Brady's Para from now until he goes to kindergarten will be Shelly. We are excited about this because Shelly is the first person that Brady responded to in a positive way. There was a day at the end of May that I brought Brady in for school and Shelly was there, and he gave her a big hug when we first got to school. It was very exciting because besides family he has never responded to any other adults in a socially positive way.
Anyway...we are still taking things one day at a time. We are hoping that now that he is in this intensive one on one therapy program that we will begin to see more and more positive changes. Hoping for the best!!