Cheat Days

I get lazy sometimes.  I feel guilty...mommy guilt!  I want things to just be easy and "normal"... so we cheat (with food) sometimes.  And it always backfires!  Chase LOVES it!  And it's awesome, in the moment.  It actually feels like things are "normal" and "easy" and "care-free"... then 2 days later reality hits!

We can't cheat!  It SUCKS!!!  I just want to feed my child the Chick-fil-A nuggets that he loves...or the grilled cheese...or the goldfish he craves!  But it's always hell to pay a couple of days later when the gluten takes full affect.

We are dealing with that wrath now.  Not nearly as bad as in the past, but we cheated last weekend and let Chase eat a grilled cheese (he LOVED every second of it and was so happy), but all of these behaviors that had gone away, came back (same story different day).  Soooo....just goes to show, the diet is actually working, and amazing to see when those things come back!

Preventing Autism | What the Parents Say

Disclaimer: I am not in any way promoting "anti-vaccination" (my kids are up to date on theirs as of their 4th and 2nd birthdays)...I am; however, promoting education.  Do you're homework and due diligence on what you put in to your children (and yourself) before giving them drugs/antibiotics/supplements/etc.  These are just a few links I have come across recently.  I have no idea how credible they are, but I feel like these types of articles just keep falling in my lap or showing up in my news feeds, etc. every day.  It can't be coincidence.  Every child is different, and every child reacts to things differently.

http://www.vaccinationnews.org/DailyNews/May2001/WhatsInVax.htm

http://yournewswire.com/johns-hopkins-scientist-reveals-shocking-report-on-flu-vaccines/

http://vactruth.com/

http://www.vacfacts.info/mthfr-genetics-autism-and-disease.html

http://thinkingmomsrevolution.com/unmedicated-me/

http://www.thehealthyhomeeconomist.com/choose-best-probiotic-supplement/

http://thinkingmomsrevolution.com/healing-power-homeopathy/

http://www.naturalnews.com/047675_MMR_vaccine_CDC_fraud_Andrew_Wakefield.html

http://www.infowars.com/immunologist-admits-babies-only-vaccinated-to-train-parents/

And when you have 1.5-2hrs with nothing left on your DVR...check out this documentary (free to watch until Nov. 21)
http://articles.mercola.com/sites/articles/archive/2014/11/15/vaccine-safety-greater-good.aspx?e_cid=20141115Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20141115Z1&et_cid=DM60121&et_rid=729985801

Resources

These are some links and resources I have frequented a lot lately, as well as some documentaries that really changed/impacted my opinions as of late.

Unblind My Mind & Unblind My Mind Facebook Page

Food Babe

Center for Proactive Medicine

Dr. Josh Axe

Meg Meeker, MD

The Greater Good Documentary (view for free until Nov. 21)

Food, Inc.  Documentary

Bought Documentary (view for free until Nov. 21)

http://gianelloni.wordpress.com/

Against All Grain  This cookbook has recently become a staple in our kitchen!

Things CH Said This Week:

*Animal (imitated this)

*Go (in response to "Are you ready to go?")

*Done (when he was "done" going potty and "done" with his iPad tasks)

*Let It Go (when Miss Morgan turned on "Frozen" for him to watch)

*Help

*Hi

*No

*J (his sweet teacher/therapist at BCA, who he loves and says her name every day he sees her now!)

*Book/Dragon (filled in the blanks with these words during story time)

*Mama (when I asked him what my name was and said it he repeated after me)

*Dada (same thing, I asked him who daddy was and he repeated it!)

*Jump
*Square
*Truck
*Duck
*Hi

Whole Foods = Happy Boys

It's been almost a month since I posted.  Things have been pretty steady on the home front lately.  Chase is continuing to make lots of progress and say lots of new words EVERY day (at therapy).  It has been truly amazing to see such a change in him.

I have been reflecting back a lot lately about how far we have come.  It's easy to get caught up in the day to day craziness, carpooling, grocery shopping/cooking, and refereeing between the boys, to notice the changes.  But when I think back to this time last year, a month in to our move to Nashville and a month in to therapy at BCA, I am truly amazed at how far Chase has come.

In the last year:
*He stopped having meltdowns over minor things (and most everything for that matter - tantrums are very rare these days)...and transitions are so much smoother.
*He stopped hitting Miles when he gets mad or annoyed at him (which is quite often). ;)
*He has learned to communicate through his iPad for 1000s of things reducing his frustrations even more.
*He recently overcame his fear of the swing...just this week he has started requesting for us to PUSH him high in the swing!  He has not wanted us near him on a swing in over 2 years.  This is something we have worked on in OT for over a year now, tolerating being on a swing.
*Stemming is at a minimum these days.  He used to do the flapping and would also hop/jump or run around the house aimlessly yelling or making incessant noises just for sensory input.  He doesn't seem to need NEAR as much sensory input lately.
*He is falling asleep without Melatonin and sleeping solid through the night (AND NOT WAKING UP AT 4 or 5am!!!) and waking up around 6:30-6:45 now. (THIS IS HUGE...we were sooooo tired for so long)
*And on that note, has given up his pacifier JUST THIS WEEK!!!
*He has become potty trained (for the most part - #1, but not #2).
*He has shifted to a gluten free/casein free diet amazingly well and is in feeding therapy, learning to eat lots of new foods (slowly but surely).
*He is no longer laughing or crying over "nothing".  He used to laugh hysterically at nothing in particular or cry for no apparent reason (I think this is gluten related, but more on that later).
*He plays with toys he has never shown interest in before and LOVES to cut and glue and do arts and crafts!
*He is more engaged and aware of his surroundings and seeks out interaction with peers more than he ever has.
*He and Miles actually laugh and interact and play with each other, and it warms my heart.
*He does not run off or elope in stressful or new situations anymore.  I used to not be able to take him and Miles anywhere "open" by myself for fear he would bolt in the opposite direction from me if I let go of his hand.  Parks without fences were not an option.  Now he stays close, and obeys me when I say "come back/here".  This is a huge relief!
*He is happy and pleasant and calm almost all the time now.  Chase has always been a sweet happy child, but now I can just see it in his eyes, he feels good, and he's HAPPY.
*HE HAS WORDS!!!!  This is the prayer we have prayed the hardest for.  And in the last 2-3 months he has started saying words!!!

On top of his amazing therapies he is receiving at BCA, we started Chase on a GFCF diet back in June.  I wrote about it here and here and here.  And I have to say, I am taken aback at how much the diet (anyone's diet) can truly affect their entire body and mind.  I honestly think, that had we not put Chase on such a strict diet, he would not have made such giant gains in the last few months.

We have recently started phasing out all processed foods in an attempt to get Chase (and our whole family) on a more whole food/organic diet.  No more processed, store bought foods, no preservatives, no GMOs, no MSGs, no gluten, no casein, no soy.  We have also cut out all supplements except for a probiotic in an attempt to heal the gut and get all the good bacteria back on track in his system, in a natural way.

CANDIDA!  Both the boys have had TERRIBLE yeast rashes around their mouths and bottoms for over 2 months now.  I have tried everything.  We started with Lotrimin and Hydrocortisone creams (did nothing), so I took them back to the pediatrician who Rx'd an antibiotic.  I opted not to give it because I knew it would not help the yeast and would probably strip their gut of even more good bacteria, only making it worse, so I researched and started using Oregano Oil and Coconut oil (rubbed on the bottom of their feet).  This helped clear up Chase's some, but not all the way so I made an appt. with an allergist.

I wanted to have him tested for allergies as well as get his IgG and IgE blood panels done, but after 2.5 hours in the office we left after the skin test (which all came back negative - as I suspected it would).  The doctor did tell me he had Candida rash and eczema (which I wasn't aware of) which could also be caused by an allergy/sensitivity to foods.  The allergist doctor gave me a Rx for Nystatin Cream (FINALLY, this is what I had originally asked his pediatrician for 6-7 weeks earlier).  I started using in along with Oregano oil on the bottoms of their feet and Chase's rash cleared up in a matter of days.

Miles was a different story.  He had not been on any special diet before all this.  In fact, he ate HORRIBLE.  He lived on "snacks": goldfish, pretzels, Cheetos, cookies, all kinds of sugary junk.  I started using the Nystatin cream on him too and after 2-3 weeks it was still not getting any better.  His mouth was nasty looking!  After talking with lots of mom's and reading lots of things on the good ole' internet, I decided to put Miles on the same GFCF diet as Chase and try to cut out as much sugar as possible (natural and not).  I didn't cut it out 100%, maybe more like 75%.

Sunday a week ago we started, and the first 3 days were HELL!  Miles cried and whined and fussed all. day. long. for those first few days.  He woke up every morning crying hysterically, begging for pretzels, Cheetos and goldfish for breakfast.  It was miserable.  I didn't really think about it at the time, but I honestly think it was "yeast die off".  His rash got worse during that time too.  He was even asking me to give him medicine (Motrin) because it is sweet!  He was pitiful...begging for popsicles and ice cream.  It was like sugar was coming out of his words! :)  But after about 4-5 days his rash has started going away, almost not even noticeable anymore, and his behavior is better.  He is waking up happier in the mornings.  It's crazy to me how much a person's gut can be affected by the foods you eat (and how unhealthy the options at the grocery store are...don't even get me started on that right now).

So for now, our household is spending HUNDREDS of dollars each week on organic/whole food groceries.  I have to look at this way...we spent hundreds of dollars each month in doctor co-pays last year because my kids were so sick all the time, and (knock on wood) we have not been to the doctor for any illness, other than the rash, since last spring!!! No colds, no stomach bugs, nothing. My boys are healthier and happier than they have ever been and it makes this mamma so happy too! :)

Words From Heaven

Every parent knows that feeling, the feeling you get when you hear your child say your name, "mama" or "dada", for the first time.  Or when they say "I love you", or the first time they say their prayers...and all the many firsts that come along when a child is learning to talk, learning language, and expressing themselves to you.

Before we even had an Autism diagnosis for Chase, speech (or lack there of) was our number one concern with his development.  We prayed and prayed for it to come.  To hear him say what it was that he wanted.  For the tantrums and frustrations to stop.  Even after his diagnosis and months in to therapy, we kept praying for words.  For something to "click" and for it to just happen.  Like you read about so many times, that one day they just start speaking.

Well our prayers have been answered.  The words are starting to finally COME!  It has been the hardest puzzle we have ever worked.  All of us.  Including and most especially for Chase.  We have prayed for direction and guidance to make sure we are doing everything we can on our part...to make sure he's in the best school setting, getting the best therapies, utilizing all the resources that we have available, and most recently prayed for guidance in alternative treatments and supplements.

We knew by moving here and putting him at BCA he would be getting the BEST possible therapies available in the state (in our opinion).  We fought to get him in to a blended preK class this year at the and his class and teacher are AWESOME!  (the public school therapies are not the best, at the moment, but that's another issue).  He will be enrolling in a KidTalk study starting after Christmas getting additional FREE speech therapy through a research study at Vanderbilt where they will come to his school 4 days a week for speech therapy!  And starting back in May we began the journey of the gluten free casein free diet.

The diet has been the hardest thing in the last few months that we have done.  Without any proven research on this topic, and with so many different options of diets, supplements, biomedical treatments, etc...it's so hard to know what avenue to go?  We started with the basic, gfcf, diet, which I wrote about here, here and here.  Most recently we have cut out soy, msgs, any preservatives or artificial sweeteners, etc.  He's 100% gfcf, and about 95% free of the other things.  He still eats a handful of things that have one or 2 of those in them, but for the most part they are out of his diet.

In the last 2 months Chase has said more new words than I can count!!!  He's saying 1 or 2 new words just about every day, at either school or at BCA.  It's amazing to hear such sweet words.  Words that we have prayed and prayed to come.  And once again, God has answered our prayers.  There is a renewed hope!

Just today in his daily notes his therapists wrote: "When looking at the star, and after being prompted to show us yellow on the iPad, CH spontaneously said "YELLOW"!  Then during art, he repeated Morgan's direction "Pat-Pat-Pat"!!!"  In another session later he said "water" and "hi" in context!  And last week he said, "Yea, videos!" when the iPad was brought out at circle time.  All of his words are spontaneous and in context, which is EVEN better, because he is intentionally saying things in an appropriate way and appropriate setting

I don't know how much the diet contributes to this success?  I am certainly not going to act like it is the cure-all, because I don't believe that to be the case.  I was a skeptic of this diet, and any alternative treatments, for a long time.  Admittedly, it was easier to be skeptic than to buck up and fight the fight to try it, because it is SO HARD, especially with a very picky eater.  But I do think, in combination with his amazing therapies, this diet has helped clear the "fog" and made the therapies all the more effective!  And we can now tell a MAJOR difference in certain behaviors when we "cheat" on the diet and give him foods with gluten or casein.  And I just don't think it's coincidental that after starting the diet 4-5 months ago, he is now saying words!

Praise the Lord, for answering yet another prayer!  I know Chase has a long way to go, but after a hard week last week, and in moments of doubt (which I am guilty of way too much lately), God once again reminds me that He is in control and that He has much bigger and better plans for Chase in His own timing.

Here is a pic of Chase last week at BCA during "western week" :)

Stewards of Children

A couple of weeks ago all the parents at the Brown Center were highly encouraged to attend this training session called "Stewards of Children" about child sexual abuse.  As soon as I read the email about what the August parent gathering was going to be about I immediately got anxiety.  This is something that has been on my mind for quite some time, especially with Chase being non-verbal, so maybe the timing of this training was perfect.  I was still not prepared for what I would learn and how I would feel walking away from the training.

The numbers are staggering.  About 1 in 10 children experience child sexual abuse before their 18th birthday.  It is likely the most prevalent health problem children face with the most serious array of consequences; ranging from post traumatic stress disorder, to anxiety and depression, to substance abuse, to aggression/hostility, to sexual promiscuity, and MANY more issues.

I highly recommend that EVERY parent or caregiver take this training course.  It is eye opening and will teach you so many ways to not only protect your own children, but any other child you know or come in contact with regularly.

Here is a BRIEF (believe it or not) overview of the main things I took away from the training...

"Child sexual abuse is: any sexual act between an adult and a minor, or between two minors, when one exerts power over the other.   Forcing, coercing or persuading a child to engage in any type of sexual act.  it also includes non-contact acts such as exhibitionism, exposure to pornography, voyeurism and communicating in a sexual manner by phone or internet.  It is a crime punishable by law."

*Child sexual abuse makes children more vulnerable to sexual exploitation. More than 90% of children who are sexually exploited have been sexually abused in the past. 
*Most child victims never report sexual abuse.
*90% of children who are victims of sexual abuse know their abuser.
*30% of children who are sexually abused are abused by family members.
*60% of children who are sexually abused are abused by people the family trusts.
*40% of children who are sexually abused are abused by older, more powerful children.
*10% of less of children who are sexually abused are abused by a stranger.
*It is also possible that you know someone who is sexually abusing a child.  The greatest risk to our children doesn't come from strangers, but from people we know and trust. 

These numbers were outrageous to me!!!!!

Ways to prevent sexual abuse: 
1) Eliminate or reduce isolated, one-on-one situations, and screen those who care for children in youth settings, to decrease the risk of sexual abuse.  80% or more of child sexual abuse incidents happen in isolated one-on-one situations. When you eliminate or reduce isolated, one-on-one situations with children, you dramatically lower the risk of sexual abuse. 
2) Scan the physical environment for hidden and secluded areas, and correct any dangers.
3) Make sure interactions can be observed and interrupted.
4) Anticipate situational risks that occur during youth activities (older youth should not be in isolated, one-on-one situations in youth serving settings).

People who abuse children often become friendly with the potential victims and their families.  They earn trust and gain time alone with children...sometimes this is called "grooming". 

Screening out people who may abuse children is another way to minimize abuse opportunities.  Background checks, in-person interviews that focus on proper boundaries with children, and personal and professional references are all good ways to screen during hirings.

One thing that REALLY stood out to me during the training, which I think is very important with all children, is that we, as parents, need to have age-appropriate, open conversations about our bodies, sex and boundaries with our children.  We need to be sure to teach our children the proper names for body parts (rather than nick names) so that if a child is ever in a position where they are trying to communicate abuse to another adult, that person is aware of what the child is trying to convey.  Make sure that children understand that no matter what has happened, they can share without fear of being blamed.

When appropriate...
*tell children what sexual abuse is
*tell them that it's your job to protect them from sexual abuse
*tell children what parts of the body others should not touch (with examples)
*demonstrate good touching boundaries yourself
*teach children they have the right to tell anyone "NO" to unwanted or uncomfortable touch - never force children to give affection, tell children to trust their gut feeling
*explain what kind of touch is ok from adults trying to help them (like using the restroom, dressing, going to the doctor)
*tell children it's not ok for others to use sexual words with them or act in a sexual way
*teach children to keep a distance from people who make them feel uncomfortable
*explain that secrets can be harmful and if someone asks them to keep a secret they should tell you about it
*teach children not to give out email addresses, home addresses, phone numbers, etc
*ask children about their online experiences and learn and monitor what websites they use
*help children determine who their trusted adults are at school and in other settings
*review safety and touching boundaries anytime a child is in a new situation
*speak and listen calmly, it's important a child feels safe and loved in all these discussions

Learn to recognize the signs of sexual abuse to protect children from further harm.
*Physical signs are not common.  However, when physical signs are present, they may include bruising, bleeding, redness and bumps, or scabs around the mouth, genitals, or anus.  Urinary tract infections, STDs, and abnormal vaginal or penile discharge are also potential signs.
*Other physical problems such as anxiety, chronic stomach pain, or headaches may occur,
*Emotional and behavioral signals are more common.  Some of these are "too perfect" behavior, withdrawal, fear, depression, unexplained anger, or rebellion.
*Nightmares, bed wetting, falling grades, cruelty to animals, bullying, being bullied, fire setting, runaway, and self harm of any kind may be signs.
*Sexual behavior and language that are not age-appropriate can be red flags.
*Use of alcohol or drugs at an early age can be a sign.

If a child discloses sexual abuse to you, they are taking a huge risk.  Give attention, compassion and belief.  DON'T OVERREACT!  Listen calmly and openly.  Don't fill in gaps or rush to "get to the bottom of it".  Allow silence in the conversation so that the child can take his/her time.  Don't ask leading questions about details.  Ask only open-ended questions like "What happened next?" or "It's ok to tell me more."  Say "I believe you" and "It's not your fault" and "I will protect you and I am very proud of you for telling me."

Leaving the training, I felt like I was NEVER going to be able to trust ANYONE with my children ever again.  I took Chase to school the next day and immediately scanned the room to make sure there weren't any secluded areas.  I told the teacher about the training session I did and asked her what their bathroom procedures were like.  I also spoke with both of Chase's therapists at his Pre-K to find out where they were doing their sessions (in the classroom or in a one-on-one setting) and made it clear that I wanted all sessions to be done in the classroom (even though sometimes I think Chase benefits from isolated one-on-one therapies, this is something I am willing to compromise on for his safety).  One-on-one has never been an issue for me at Brown.  Every room is equipped with a camera that is wired to the parent viewing room so it's never even been an issue there.

After doing my due diligence and knowing the signs and things to look for, I feel SOOOO MUCH better knowing that I am doing the most that I can to protect Chase and Miles from that kind of exposure and abuse.  I can't keep them holed up at home for the rest of their lives (even though sometimes I think I want to).

For anyone interested in this training here is the link:
http://www.d2l.org/site/c.4dICIJOkGcISE/b.6243681/k.86C/Child_Sexual_Abuse_Prevention_Training.htm

THE. Carpool. Mom.

Life has been crazy lately (hence no recent posts).  Everyone is back in to the swing of school.  Chase is back going to his Pre-K elementary school class Monday - Friday mornings 8am to noon.  I pick him up between 11:30-12 and come home, feed him lunch, then back in the car to go to BCA from 1:00-4:00pm Monday through Thursday.  It's a long day for him, but he LOVES it and is doing SO WELL in both places.

Miles is still going to BCA as a peer model Monday and Wednesday mornings from 8:30-11:30am.  So on those days, after I drop Chase off, I head to BCA to drop Miles off, go run errands or go home for a couple of hours, then get back out to pick Miles up at 11:30, then go straight to pick Chase up from Pre-K, go BACK home to re-pack snacks, lunch boxes, do lunch, etc... then at 12:40 leave the house again to take Chase to BCA.

On Tuesdays and Thursdays now, Miles has started a Mother's Day Out program from 9:00am-2:30pm.  So on those days I drop Chase off at Pre-K, come back home for an hour, take Miles at 9:00am, pick up Chase at noon, do that whole deal, come back home for another hour and half (or errands, or whatever), pick Miles up at 2:30pm, and then Chase gets picked up again at 4:00pm.

I am THE. Carpool. Mom! :)

But the boys LOVE it.  Miles is loving both places and learning SOOOO much from each of them.

Chase is thriving at Brown right now, saying so many new words lately I can't keep count. He is talking up a storm in his Pre-K class now too.  Not full sentences yet, just words, but it still a miracle.  This has been our number one prayer from day 1...for Chase to talk.  I feel like we are finally on that road and seeing a light we weren't sure we would ever see.

It has been a great first start to the school year.  Of course 2 days in to school starting, both boys came down with runny noses and coughs, but nothing (so far) like we dealt with last year (fingers crossed and prayers being said it doesn't get that bad this year).

All in all, we have high hopes that this year will be a great one for both boys...we seem to be off to a great start either way! :)  Thank you to all the people out there cheering us on, praying for us, and sending us words of encouragement.  They each mean so much to us and we couldn't do this without you all! xoxo

Chase's 1st day of Pre-K!

Miles's 1st day of MDO!

The Lake

I say this all the time, but Chase never ceases to amaze me.  We took a last minute trip to my aunt and uncle's lake house a couple of weekends ago, in Alabama.  My boys had never been to the lake/river, never been on or around a boat, and I wasn't really sure what to expect.  I wasn't THAT nervous because my sister was going and my parents were meeting us there so I knew Chase would at least feel comfortable with familiar faces around.  I was more nervous about how he would react to being on a boat or waverunner and how he would do swimming in the lake where he couldn't see the bottom.

Well, I did NOT need to worry about any of it because he LOVED it all!  We got there around 6pm and he went straight down to the dock to the water wanting to get in.  And he did!  He jumped right off that dock, swam around to the steps and did it over and over again!

He was not scared at all to ride the boat of the wave runner either.  He was a little nervous, gripping us tightly at first, but once we got going he loved it! :)  (Miles, on the other hand, was a different story)

The 4-wheeler was BY FAR, Chase's favorite thing about the weekend!!!  He wanted to ride every waking minute! haha!  I think every person there took him on at least one ride.  

I am so thankful we had the opportunity to expose the boys to such a fun experience, especially since I grew up at the lake with my family from the time I was born through college.  It was such a neat and awesome experience to watch our kids experience things for the first time and see the excitement and joy on their faces!  Not only that, but to spend time with family who we don't see very often was a treat itself!  

Diet Update and Observations

We are still doing the GFCF diet.  And although we have seen A LOT of new and exciting things happening with Chase lately, especially new words, I am still skeptical and hesitant of this diet.  IT'S SO HARD!  I know I am being a total wuss about it.  I give in more times than I want to admit and let him eat regular waffles, or goldfish, or a peanut butter and jelly sandwich.   It's just hard when he's so pick and eats soooo little not to want to give him what I know he likes.  And the times that get me the most are when his eyes well up with tears and he starts crying to eat what he sees Miles eating.  Breaks my heart, and breaks me down...I give in every time.

It's not the end of the world.  His reactions to gluten and casein aren't so severe that it throws our whole household out of whack, but I know it just makes it harder to start over the next day or meal.

The biggest things we have noticed with Chase, regarding when he eats gluten/casein vs. when he doesn't, is his temperament and emotions.  If he eats it he seems to be so much more sensitive (crying at everything) or has more tantrums and stims on his iPad much more.  He seems much more hyper, jumping and flapping around the house.  I have also noticed that he "zones out" more when he's eaten gluten and casein.  He isn't as responsive to us and seems like he's ignoring us when we call his name.  He also isn't as tolerant of Miles and the hitting and pushing resurface.  He's overall just more emotional and you never know how he's going to react to something.  When he's on a good stint of GFCF he's much more predictable and mellow.  The stimming is significantly less and he responds to his name and us asking him to do things MUCH better.

So, I can't deny that this diet is helping Chase.  I know I need to buckle down and be really strict on it, but we are still working on getting him to eat more variety to make that a little easier on us.  Right now his diet consists mainly of fruit, peanut butter, ruffles and GF chicken strips.  He will occasionally eat other things, but he's starting to get to where he won't even eat the chicken (I'm sure he's sick of having it EVERY night for dinner, I know I would be!).  So until we can widen our array of foods, we are doing the best we can to stick to this diet and hoping to see some more awesome progress unfold with Chase! :)

Just Be "Mom"

When this whole journey started with Chase and he began therapies with TEIS (when he was around 2 1/2) I put a lot of pressure on myself to do as much therapy with him as possible when he was at home, not in school or therapies.  I was constantly beating myself up, feeling like I could have done more that day; I should have done more.  I hear this same feeling from a lot of mom's with children with Autism.  We always feel like we could be doing MORE, always!  And it can really beat you down emotionally.

Someone made the comment to me once, "Just be his Mom, and don't put too much pressure on yourself the be his therapist 24/7.  He needs a mom first and foremost, more than a therapist."  And when I stopped and really thought about it, it was true.  Yea, he may have learned to stack blocks faster if I had pushed harder, or he may have learned to play back and forth catch sooner if I did more practicing with him, but at the end of the day, I decided I just wanted to ENJOY my child.  Life is too short and we were all exhausted and stressed out enough as it was at that point.  I didn't want to always be "working" on something.  I just wanted to play!  To laugh!  To hug and cuddle!  And if I could work in a little therapy strategies here and there, throughout the day, while we are playing and doing fun things, then great!

Once I took that pressure off myself I felt like I could breathe a little more.  I felt like I actually enjoyed my child more and I think he felt the pressure on him lift as well.  I'm not saying not to reinforce therapy strategies at home, but there has to be a balance.  Now that Chase is in school every morning and at Brown until 4 every afternoon, it doesn't leave much time to practice or do much therapy at home.  So I spend at lot of time emailing his therapists and teachers at school, to make sure they know what he's working on at Brown, to make sure everyone is on the same page, and to make sure Chase's therapies are as consistent as possible.  And we spend meal time and bath time trying to work in some strategies and "work".

The rest of the time I let him do his thing for the most part.  He's only 4.  He still needs time to be just a kid.  And this is something I have to remind myself of often.  I get anxious to push and push and see results, but I know it won't do any good for any of us to push too hard.  My one piece of advice, that was shared with me and I pass along, is for any new mom's or parents starting out on this journey, feeling like they have to do it all, remember that your child NEEDS YOU as a mom/parent first and foremost.  The therapists will come and go, but you are the one constant cheerleader your child will have.  The more you can praise and encourage your child and make them feel secure, the best chance they have at succeeding.  And I think this is true of ALL children, not just children with Autism or special needs.

CH Daily Notes from BCA 7-28-14

Here are what the daily notes look like, and all the details, from Chase's day while he's at Brown.  They don't miss anything and are constantly updating every detail of his day and interaction while he's there.  It's awesome to see the minor changes from day to day that are actually really BIG! :)

CH was so happy in the classroom today, he smiled and bounced as he clapped along to the new zoo songs.  He looked out the window and the sunny weather, during "weather time" and put a clip on the weather board.  CH traced the letter U, and raised his hand to go to art without prompting!  He made a U for umbrella in art today too!  (Wendy)

CH had a good OT session today in the "gorilla gym".  He was all smiles throughout the session and really enjoyed the brushing and jiggler today.  He did a great job with his programming and tried the body sock again today.  It's a bit sneaky but he did really well swinging in the body sock because he couldn't see my hands pushing him to try and stop me! :)  He loved giving out hugs to me today and was attempting to talk all throughout the session!  (Mandy)

CH had a great session today! He was all smiles and a great listener today.  He engaged so well with all of his tasks and even said "frog" a few times again today!  He participated so well today - Great job! (J)

CH chose to play in thematic play first today.  He played the clown games and got in the animal "cage" at the zoo.  While he was in the cage his friend pretended to feed him some corn and strawberries.  He pretended to eat it with no prompting!!!  Not only did he eat it, but he was smiling the whole time and looking right at his friend! :)  It was so great!  In play centers CH played in collaborative play with some support and also pushed a train and a leopard car.  During social games CH responded to with no support and made a match in "memory"! (Morgan)

Tantrums Vs. Meltdowns

Today we had what you call a MELTDOWN!

I don't know why I thought it would be a good idea to try to make Chase poop in the potty.  This is something we have pretty much not even tried to do since we initially got him potty trained.  He pees in the potty without any problems and hardly ever any accidents, but he will NOT poop.  He strips down, puts on a pull up and goes to hide in our closet instead.  It really doesn't bother me all that much.  I know, just like EVERYTHING ELSE, he will do it when he's ready.  It bothers Big C more than me, and today I just happened to catch him in the process of putting on a pull-up so I thought I would try to get him to go on the potty.  BAD IDEA.  A 20 minute meltdown ensued.  

So guess, what?!?  He now has on a pull-up and is happily sitting in his bed, playing his iPad, waiting to have to poop again.

Baptism

This video was so moving to me!  I pray all the time that Chase is able to understand the concept of God and faith and being saved.  This gives me so much hope for him!

http://www.faithit.com/nonverbal-autism-millie-hunt-amazing-god-story/#.U7r5OMEXqbQ.facebook

Lots of FIRSTS for Chase

In the last week Chase has blown us away with all kinds of new and exciting things.  It started the Saturday of the Race Across the Spectrum 5k...we were swimming that afternoon and I said "go to My Miles" (which is what baby Miles calls Aunt Miles) :)...anyway, Chase said "My Miles" right after me and proceeded to swim straight to her like it was no big deal.  I wasn't sure I heard him clearly, but Miles heard it too!

Then last week at school, on Wednesday, he was working on some of his iPad goals saying "I + see + dog/frog" when the therapists holds one of the 2 things up.  Miss J said "what do you see?" and held up a dog, and he actually said "dog", then she held up the frog and he said "frog"...OUT LOUD...clear as day, like no biggie!  We tried to pull the video from the session but the sound was unplugged, OF COURSE!!!  I still can't believe it!

The next day they were going around working on waving "Hi" and "Bye" to people and he actually said "Hi" and "Bye" 3 different times.  AND THEN in the classroom they were pretending to be in a car going through the car wash and Miss Morgan said "scrub scrub" and Chase repeated it exactly like that after her!  What an exciting week!

Not only has he been saying new words, but during circle time he has been actively participating in the weather and story times and spontaneously raising his hand for a turn to do different activities...this is HUGE engagement!!!

And THEN, we went to Jackson for the weekend and Big C took Chase to the bathroom.  When he was finished Big C said "All done?" and Chase said "all done!" then hopped off the toilet and ran right along his merry little way!

He's been saying a lot of new consonant sounds lately as well /f/ and /p/.

Lastly, this may not seem like a big deal to many people, but we were at the playground last Thursday and I kept noticing Chase inching his way closer and closer to the swings.  He used to LOVE to swing, up until around age 2, then something switched and he was TERRIFIED of it.  He would have nothing to do with swinging, would run to the opposite side of the playground from the swings and completely freak out if we even tried to get him to sit on one.  I'm not sure if something happened to scare him or if it's a sensory thing, but regardless, he has wanted nothing to do with a swing for the last 2 years.  We have been working on this in OT and we got him a platform/hammock type swing for his birthday this year that he does actually like and will now sit and swing on.  But back to the playground...he eventually sat down on a a swing, lifted his feet, then began pushing off with his feet and SWINGING!!!  I couldn't believe it!  I think I took 10 videos of him doing this!  He even let go with his hands a few times!  It was amazing.

This kid never never ceases to blow me away with the skills and things I have taken for granted for so long!  He always does things on his own timing and when HE is ready to do them.  I have always said, from the time he was an infant and learning to sit up or crawl, he will do it when HE is ready and on his own terms, and that has been true of him from day 1!

I had kind of come to terms in my mind, that he may not ever talk and I was going to have to be ok with that.  I was mentally preparing myself for that to be the case.  But after last week, that is the most he has said EVER in his life, in such a short period of time, I am beginning to have new hope, albeit cautious hope (trying not to get my hopes up too high), but still praying daily that his speech evolves more and more each day.

Race Across the Spectrum 5K for Autism

It was great day celebrating and supporting The Brown Center.  I just want to thank all of our family and friends, who not only signed up for our team (Race for Chase), but who showed up bright and early for the 7:00am start time to race!  You all are rock stars and it meant the world to us that you were there!  And thank you to all the other people who could not be there with us physically but who donated or sent prayers and words of encouragement.  We love you and appreciate you all! xoxo

Grand Marshalls for the race

Crossing the finish line!!!

Most of team "Race for Chase"!

Fundraising for BCA

Dear Friends and Family,

I hope this email finds you all well.  As most of you probably already know, this coming Saturday is one of the biggest fundraisers of the year for The Brown Center (where Chase receives therapy), The Race Across the Spectrum 5K.  The Brown Center is a non-profit organization that depends on donations for over half of its operating expenses, along with the tuition each family pays.

I have had several people ask about making donations, who are not able to attend the race this Saturday, so I am sending out this email with information on how to make donations to the "school".  There are several ways to donate online or by mail, but the way that is most meaningful and beneficial to Chase, and the therapy that he receives, is below.

A scholarship fund, named Jackson, TN Scholarship Fund was set up through the Brown Center where any donations will go directly to Chase's benefit.  And in the future, if any other families from Jackson attend BCA, this scholarship fund will remain to benefit their child(ren) as well.  This is a tax-deductible donation and a tax receipt will be mailed to you for any donations made.   

To make a donation to this fund simply mail a check made out to "The Brown Center" and in the memo area put "Jackson, TN Scholarship Fund".  

Mail checks to:

The Brown Center 

2702 Greystone Rd.

Nashville, TN  37204

For any questions regarding donations or if you would like to donate using your credit/debit card please call Lena Warren at BCA at 615-385-7994.

The Brown Center has been a true God-send for not only Chase, but our whole family.  I wish every child with Autism had access to the kinds of therapy Chase is receiving at BCA.  He is doing so well and learning so many new things every day.  He amazes us with the progress he continues to make and we have learned so much, ourselves, in this process. The Brown Center

We truly appreciate each and every prayer, words of encouragement, and support you have all given throughout this process and our move to Nashville.  We know without a doubt this is the BEST place for Chase to be and we cannot thank you enough for being there for us!

Sincerely, 

The Herndons

GFCF Update

We have now been GFCF for 6 weeks.  I miscalculated and thought it had been 8, which was my cut off time for trying it out.  I have been struggling a lot lately about whether or not this diet is having any affect on Chase or whether we are seeing any positive changes.  It's so hard to tell with him because the diet has not unlocked his speech or had any other miraculous side effects (so we thought).  And I'll be honest, I was really hoping the diet wouldn't work for him because it's so hard and so expensive.  He is already a picky eater and now with this diet he only eats a handful of things, mainly: fruit, ruffles, peanut butter and GF chicken strips.  I have been counting down to the 8 week mark to be able to quit this diet, I won't lie.  Well, we are only at 6 weeks, I just counted back on the calendar, and it turns out we may have seen more positive results than we really though.

Chase has had a couple of GF things throughout these last 6 weeks, but we hadn't really noticed if it had any effect on him, negative or positive, so I just assumed that gluten must not really bother him.

This past Thursday, while I was feeding Miles lunch (a piece of cinnamon toast), Chase saw it and grabbed it and started shoveling the toast in his mouth.  I thought "oh well, it's been 8 weeks, I'll just give him some toast and see what happens?!"  Well, that turned in to regular waffles for breakfast on Friday, Chick-fil-A for lunch, and grilled cheese for dinner, with a glass of regular milk.  Saturday for breakfast he had 4 Pillsbury cinnamon rolls and a peanut butter and jelly for lunch.

By Saturday afternoon he was kind of grumpy and ill/irritable.  I just thought it was because he had woken up early and we had gone swimming so he must just be tired.  By this morning (Sunday)...it was clear...the gluten was having a seriously NEGATIVE effect on Chase.  He is stimming out of control on his iPad again, having melt downs and tantrums over EVERY little thing or if he doesn't get exactly what he wants, BOUNCING OFF THE WALLS and yelling just to be loud...all the annoying, pull-your-hair-out, make you want to scream at your child, kind of things.

I had not even realized how much these behaviors had gone away because I have been so focused and stressed over what I'm going to feed him next or how much this diet is costing us.  I really didn't want to see any positive side effects from the diet unless they were BIG.  But after having a day and half of these behaviors back in full force I can say without any doubt or reservation that this GFCF diet is WORTH IT and IS WORKING.  We immediately cut the gluten back out of his diet after breakfast today and will not be going backwards again.

GFCF Diet

I haven't posted in a while because it's been a rough few weeks since we got back from the beach.  After meeting 2 amazing families, both dealing with Autism, my sweet new friend Andi sent me several books on gluten-free diets and I have spent a lot of time reading and researching gluten-free and casein-free diets in children with Autism.  We have tried this diet once before, when Chase was around 2 1/2, but we had been thinking (prior to our beach trip) about trying it again now that he is older and eating more of a variety of foods (and in feeding therapy to help support us in the process).  I initially said I didn't want to try the diet on him until I had definitive answers as to whether or not he had any gluten/casein allergies or sensitivities.  I wanted to get blood work done (IgG and IgE blood panels), but after calling around and looking in to that it seemed like an expensive process, not covered by insurance (surprise), and not worth the hassle.  I can't help but wonder if God put Andi in my life to revisit this diet option and introduce us to new literature and information about it?   So we dove right in and started the diet 2 weeks ago Saturday.  We just cut all gluten and casein out of his diet cold turkey.

He has done really well, for the most part, adjusting to the foods we have had to replace with GF options and hasn't seemed to miss his dairy products all that much.  He doesn't LOVE the new options, but he eats them and doesn't put up much of a fight (like our last experience with this diet).

One reason we decided to give this diet a try again is that Chase has seemed abnormally (for him) hyper the last several weeks.  His attention span is shorter than normal and he has been waking up SUPER early, even for him (4:30-5:00am!!!!!).  It is taking its toll on the whole family and really wearing all of us out.

So the more I read about gluten and it's relation to Autism, and how it affects people's (not everyone's) brain, it really made a lot of sense to me and got me wondering if maybe removing it from Chase's diet would help with all these issues we have been having lately.

In a nutshell, what I gathered from everything I read, is that children who have "leaky guts" doesn't necessarily mean they have bowel movement issues.  Chase has always been very regular in this department so I previously thought we had no reason to think he had "leaky gut", thus no reason to try this diet.  BUT from what I gathered, researching all of this, is that "leaky gut" just means that the way some people digest certain food proteins (particularly gluten and casein proteins in this case) can affect how their brain functions and reacts to those proteins.  So some people with "leaky guts" don't fully digest gluten or casein proteins in food, they get through the digestive tract walls in to the blood stream and go to the brain, acting on the brain like Opium, and causing all kinds of behavior and developmental problems in some kids/people.  This made sense to me when thinking about all of Chase's ADHD type behaviors and the way he has been BOUNCING OFF THE WALLS lately with hyperactivity.

We are now a little over 2 weeks in to this new diet.  The first 10-12 days were ROUGH.  His behaviors got REALLY bad, waking up sooo early, VERY VERY hyper and "stimming" WAY more than normal, and having tantrums over the smallest things (like not going the way he wanted to in the car).  He has pretty much not had a tantrum in almost 6 months prior to starting this diet.  I had read that there can be a "withdrawal-like" side effect when you first start the diet and that it can last anywhere from a few days to a month while the gluten/casein is working its way out of your system.  And a lot of times behaviors get worse before they get better.  It's like "coming off of a drug" and having drug withdrawals.  I am praying that is what we are going through.  Although Chase has still been getting up really early still, just the last few days the hyper-activeness and overall wildness have seemed to settle down a little bit.  It's still a little early to tell how this will affect him, but I hope in the next week or 2 we have a clearer idea.  Stay tuned...

These are a few links to some of the books and information and I read:

http://www.amazon.com/Kid-Friendly-Autism-Cookbook-Updated-Revised-ebook/dp/B004PLNSDG/ref=sr_1_1?ie=UTF8&qid=1401737637&sr=8-1&keywords=Gluten+Free+diet+in+autism 

http://www.amazon.com/Grain-Brain-Surprising-Brains-Killers-ebook/dp/B00BAXFCPO/ref=sr_1_1?ie=UTF8&qid=1401737726&sr=8-1&keywords=grain+brain

https://www.youtube.com/embed/iL4SD5f2toQ

http://www.thegfcflady.com/

http://www.drperlmutter.com/a-gluten-free-casein-free-diet-may-lead-to-improvements-in-behavior-and-physiological-symptoms-in-some-children-diagnosed-with-an-autism-spectrum-disorder-asd-according-to-researchers-at-penn-stat/

http://blogs.prevention.com/inspired-bites/2014/05/12/food-allerg/

The Move Of All Moves

We sighed a big sigh of relief...this move to Nashville was working out after all.  We were scheduled to move September 1 (the Sunday of Labor Day weekend).  Chase was on call and wouldn't be able to come help.  My dad was off work, so the plan was that we would drive up to Nashville that morning and unload as much as we could in to the house, with the help of my sister and her boyfriend, and then drive back home that night while my mom kept the boys in Jackson.  I had been taking loads of boxes and putting them in Miles's (my sister's) garage every time I went up to house hunt, so all the boxes were there.  We had loaded up a POD with all of our furniture that was waiting in the driveway at the rental house.

We were scheduled to arrive in Nashville around 10am that Sunday.  I called my landlord Saturday before we left to make sure we could get in to the house to start unloading.  He informed me that we could not get a key until we paid our first month's rent (THANKS FOR LETTING ME KNOW NOW!).  It was a Saturday afternoon!  Banks weren't open!  What was I supposed to do?!?!  My only option was to drop a check off at their office when I got in to town Sunday.  FINE!  DONE!  So I dropped the check off through the slot in the office door at 10:15am Sunday and called to let Ethan (my not-so-nice landlord) know the check had been dropped off.  He then told me he would have to verify it was there before he would give me the code to the key box on the door, and that would be after he got out of church!  WTH buddy!  We just drove 2 hours to start moving and while I'm glad you are going to church this is SOOOO not convenient!  UGH!  

We made the best of this annoying situation and decided to just unload what was in our cars in to the carport at the rental house and go get loads of boxes from Miles's until Ethan got out of church.  [Side note: my dad and I are like 2 peas in a pod!  Literally, it's scary how much we are alike.  We are both very efficient minded people (somewhat OCD) who think we can do pretty much anything ourselves, don't like to ask for help, and like to get things done quickly].  That being said...We arrived at Miles's and started to put boxes in to the back of one car when my dad looked at me and said "I hate to tell you this, but I feel kind of weird."  Ok?  I said, "Like you feel sick or something?"  His response was, "Well I kind of feel like I may be having a heart attack!"  WHAT?!?!?!?!  My "motherly instincts" kick in and I am like, "ok, what are your symptoms?  What hurts?  etc..."  He tells me he picked up a really heavy box (which I had told him NOT to do until I could help him, but he did anyway) and then started feeling "funny".  There he goes trying to be efficient and not waiting for help like I told him to! 

Off to Vanderbilt ER we go...

We valet park, (such a nice amenity) especially considering you are automatically billed $2500 just for walking through the front door, and continue on to triage.  It doesn't take us long to get to a room.  My dad's EKG checks out fine so they proceed to do blood work and hook him up to monitors to check his BP and heart rate, etc.  

After his EKG and everything came back normal I finally sighed some relief, BUT they said he would have to stay to be monitored for at least 6 more hours.  It was 11:30am at this point.  I texted Ethan what had happened and asked him if there was ANY way he could go on and text me the code to get the house key so my sister could get in the house and start putting boxes inside.  He never responded.  In the mean time Miles and her boyfriend started making trips from her house to mine with boxes.  Eventually Ethan showed up (around 1pm) and let them in the house (how nice of him), never once asked how my dad was doing. 

I called to fill my mom in and she and my brother got in the car to come to Nashville to help while Chase's grandmother came to keep the boys.  What a nightmare!  Was this really happening?  After everything it took to get to this point WHY was this happening now?!?!  Praise the LORD my dad was ok, but it was still a very scary few hours.  He ended up only having a pinched nerve in the left side of his neck that was sending some pain in to his left chest and numbness in to his left arm.  False alarm for heart attack.

My dad insisted I leave him there and go help Miles, so knowing my mom would be there within the next couple of hours I went and we started unpacking the POD.   We worked our tails off (me, Miles and her boyfriend).  My mom and brother finally showed up at the house with my dad (they let him go early since everything checked out ok) and we got everything inside and somewhat organized.  My dad and brother went on home and my mom and I decided to stay and head back a little bit behind them.  

Well we got ready to leave behind Miles and her boyfriend and realized my mom's keys were locked in her car!  ARE YOU KIDDING ME?!?!  Is this really happening?  There had to be a hidden camera following us today!  Luckily, Miles's bf had roadside assistance through Verizon that would come unlock the car for us, but it was going to take at least an hour.  It was 4:30pm at this point and had been a very long day, but we didn't have a choice.  We waited.  And we finally made it back to Jackson around 7:30pm that night.  LONGEST. DAY. EVER. (almost)

God's Timing, Not Ours

God has had his hand in this process from day 1.  Our move to Nashville that is...

As I look back on this past year, the fog is lifting, the 20/20 vision is returning, and the weight is being lifted from our shoulders a little at a time.  It has become apparent that God has had his finger on this whole transition from the get go.  We always knew He did, but seeing it in hind sight is pretty amazing!  Why did we ever doubt Him in the midst of pain and suffering?  It's so easy to ask WHY?  Why me?  Why an innocent child?  Why are things not working out?  Why is it taking so long?  Are you really there God?  Are you going to help us out here?!?  

We had many "questioning" moments this past year.   And still do. 

Once we got home from the "diagnosis" we made a conscious decision not to discuss it with many people until we could figure out a game plan.  What to do next.  We didn't want the diagnosis to define Chase or be a negative label.  We didn't want everyone's opinions or suggestions of what we should do. We weren't ready to answer a bunch of questions until we could let it all sink in.  We just wanted to pray and research and make the decision we felt was best for our Chase.  We knew from the moment we got his diagnosis we would have to move.  We were ok with that, we had a peace about that much.  Deciding where to go was the big question.  Insurance, in the state of Tennessee does not cover any types of therapy related to Autism.  If you are lucky you may get 30 speech or OT sessions partially covered, but that doesn't touch what Chase really needed/needs (therapy EVERY day...you could breeze through those 30 visits in less than 2-3 months).  That was a factor in our decision, at first.  We looked at Texas and South Carolina.  Those were the 2 closest states to home where insurance covered the cost of therapies.  It was all so overwhelming...where to begin, where to look, etc.  All we could do at that point was pray about it.  We prayed for God to give us answers, to show us the path to take, to lead us in the direction that was best for our WHOLE family, not just little Chase.  Something about moving so far away, regardless of insurance, just wasn't settling.  I knew we would need the support of our families in the upcoming months and years of Chase's therapy so we kept praying for guidance.

My dear friend Abbie called me soon after I told her about the diagnosis and put me in touch with a girl she used to be in small group at church with, Rachel.  She told me that Rachel had moved, about 6 months prior, to Nashville to put her autistic son in a program there.  (Was this a sign from God?  I definitely think so!)  So I called up this total stranger and confided in her details about my son that I had never shared with anyone outside of family.  She told me her story and shared her resources...invaluable tools on this journey.  She would become my advice go-to and my sense of sanity and understanding in the months to come.   She would be the one to introduce us to our new home for therapy here in Nashville...The Brown Center for Autism.  I scheduled a visit to BCA in early March and knew instantly this is where we needed to be.  I had such a peace about this place and felt that it was EXACTLY what Chase needed.  Another answered prayer!  We put our house on the market shortly after and waited for the showings to start.  Chase went back to Nashville with me in early April for a "parent interview" at BCA and it was at that point we wrote a check for our first month's tuition to secure our spot...August 5 was the start date!  We had NO IDEA how we were even going to get ourselves to Nashville, but we knew we had to do everything in our power to try.  

Our house got a contract on it within 5 weeks and we started packing up.  Then the first setback came...the buyer backed out 2 weeks prior to closing.  Disappointment and frustration began.  Trying to sell our house became our #1 priority, behind making the most of Chase's therapies in Jackson.  By mid-July, with no offers in sight, and going back and forth on whether or not to rent (I was very hesitant about renting), we decided to try leasing our house and had a renter within a day, (BLESSING)!  And on top of that they agreed to pay well over our mortgage for a year lease, (BLESSING)!  Check the house off the list.  We finished packing and moved in with my parents at the end of July.

The next step in the process was finding Chase a job in Nashville.  This would prove to be the most challenging and testing of the steps to get there.  His job in Jackson was VERY demanding, leaving him little to no time to interview or make phone calls.  He spent many late nights emailing and searching online while I began the house hunting process.  As August 5 approached we realized we would not be making that deadline to get Chase started so we pushed the start date back to September 9, after Labor Day.  That gave us a few extra weeks to search for a job and a house.

As the days ticked down and no job interviews were scheduled frustration and doubt creeped in.  We knew this was the right decision and we had faith that God would provide for us, that things would work out...but I am a planner and I wanted things mapped out and marked on the calendar.  Not what God had in mind.  We weren't sure what the next steps were.  Do we commit to a house/lease without Chase having a job?  Do I commute with little Chase until Chase can get a job?  Do we push the start date back AGAIN?  All we could do is pray...and continue to have faith that God would work things out.  My main prayer in these days of doubt were that God would help me keep my faith in Him and that I would continue to trust in Him and in His timing.  Chase and I were both adamant that he begin at BCA on September 9 NO MATTER WHAT we had to do to make that happen. 

I started driving to Nashville and looking at rental houses.  On about the 5th trip to Nashville, in pouring down rain, 2 weeks from Chase's start date at BCA, I finally found a house.  I was so tired of looking at over-priced, tiny rental homes, I just said "WE WILL TAKE IT"!  I was a nervous wreck signing the lease and sending in the check for the first and last month's rent plus security deposit.  THIS IS IT.  Here we go!  We are committed now.  It was a huge leap of faith for us because Chase still didn't have a job.  We still had doubts and reservations about whether or not this was the right choice.  Then the interviews lined up.  Chase left for Nashville on a Friday morning at 5am with 2 interviews scheduled.  By the end of the day he had met with 5 people and had 2 offers on the table within a week.  But the money wasn't enough to pay for Chase's therapy and this new cost of living.  The next major hurdle we had to get over.

There was one more possible job offer we were holding out for.  Chase put off the other offers as long as he could.  Should we risk losing these offers holding out for a better one?  I was a nervous wreck, again!  Then it came...5 days before we were supposed to move, the offer he wanted!  Praise God!  Chase would work out his 2 weeks here in Jackson and be in Nashville a week after I moved with the boys (not ideal, but we were ecstatic it had all worked out)! 

We joked throughout the entire time that God would let everything fall in to place, probably at the very last minute and boy did He ever!  Down to the wire!

Look In The Mirror And Smile

I came across this blog post just as I needed to read it...it's funny how those things always happen!

Look at yourself in the mirror and smile

At the end of the day, as you drag yourself to bed, look in the mirror and smile! You made it through another day. Regardless of the challenges that were presented, how much you feel you accomplished or didn’t complete, you made it through another day protecting your family, advocating for their needs, and scaffolding this chaotic world for your child. You may feel completely exhausted, that you are defeated, like you said and did everything wrong, and left behind a million things you have left to do! However, if your family is safe, protected, and receiving your love, you have had a successful day!

Between running between therapies, meeting with professionals, advocating at school, dealing with a meltdown in the middle of Kroger, arguing with a family member who feels that you are parenting wrong, chasing your child as he escapes down the block, and watching as your child changes clothes twenty times before he finds the one outfit that feels comfortable, you may not feel like a success! Believe me; most parents of children with special needs are super human! They take on more challenges and stress, and have to multitask more than any other parents. It is a new battle everyday and you tackle them as a passionate soldier! You enter challenges for which people do not have answers. You are often alone, facing challenges that most of us would run away from. Why do you do it? You have no choice! You are your child’s voice, protector, mentor, source of love, and the only one who truly knows him. You are his link to the world, and with every day that passes, you have served that role with honor and passion. So look at that face in the mirror each night and smile! You are one awesome person!!

What It's Like

I came upon this book "Chicken Soup for the Soul: Raising a Child on the Spectrum".  I used to love the "Chicken Soup" books when I was in middle and high school and had no idea they had expanded them to so many different versions now, but wanted to check this one out just the same.  This excerpt is from the first chapter, but I thought it was spot on and explains a lot about what it's like, day to day, to live and deal with the struggles and triumphs of raising Chase (and any child on the spectrum).....

1.  In the beginning its like death.  No matter how much you plan to give your children the freedom to achieve their dreams, naturally you have a few dreams of your own for them.  You dream of birthdays and holidays, Santa and presents, going to Disney World, playing board games, Boy Scouts, Sleep overs, team sports, high school graduation, getting married and watching them have children of their own to love.  And though many kids with Autism will grow up and do just those things, more than half of them won't.  So you mourn for what might not be.  You mourn for what you and they are missing out on now.  And later, you may mourn for what will never be.

2..  Despite the death of the dream child you envisioned, you are deeply in love with the child you have.  He still does adorable things that you want to share with others.  He loves you too, but the rest of the world won't always get to see it.  Because when he's away from home, he's not himself, he't out of his element and comfort zone. He's not the happy affectionate child who holds your hand, snuggles and gazes at you adoringly while pulling your hand back run his arm or leg.  The world won't get to see him at his most charming and you will see pity in people's faces. They won't ever understand the very real, profound joy this child brings into your life every day.  Part of being a parent is pride in your children.  People won't see what you are so proud of.  And that can be a lonely feeling.

3.  Guilt assails you from all directions.  You want to throw a beautiful birthday party for your son.  But he may not notice.  He may not be the least bit interested in the presents, and you fear disappointing the guests.  He may struggle to get out of your arms during the party, and you may see sadness beneath friends' and family's smiles.  So you consider not having a party.  You consider not taking him to others' parties.  You want more than anything to give your child the experiences typical children have and feel guilty when you don't.  But sometimes it's simply too overwhelming for you to try.  Therapists want you to spend hours doing activities to help him, but you also have a job and another child who needs you, and you need some down time on occasion to keep from going insane.  So it seems as if you can't ever do enough for him.  The guilt is a killer.

4.  You live in a constant state of uncertainty about the future.  Yes, of course none of us knows our future.  But, if you have a typical child, you can be reasonably confident that he will have friends, self-sufficiency, and love.  You know who to leave things to when you die.  But if you have a child with autism, you don't know how to play your estate.  Do you set up a special needs trust?  Do you leave it all now to the one typical child who can use it?  because lifetime care for your autistic child will just drain it.  And what if he grows to do well and is able to care for himself?  because you can't yet guess what will be, every option seems wrong.  Uncertainty can affect every part of your life.  Should you settle down where you are or should you relocate to a city with more intensive care for his needs?  Will he ever talk?  Will be ever be potty trained?  you just won't know until it happens or it doesn't.  And you live with fear that one day your then-elderly, vulnerable child will lie sick or dying without comfort of someone who truly loves him.  Anxiety runneth over....

5.  Spontaneity is a thing of the past.  You can't just get up and go.  You have to determine whether there is an escape route from any new activity or location.  You have to pack things to distract him if he becomes upset.  You have to determine if foods he will eat will be present or if you will need to pack his meal.  If he isn't potty trained, you will worry about where you can change his diaper that will afford you both some dignity.  Everything must be planned and considered before leaving the comfort zone he is used to.

6.  You begin to grow thicker skin.  Because people stare.  They stare in disgust, thinking he is simply badly behaved.  They stare because they are curious.  They stare in horror or pity something about him is "different".  People stare...And the thing that will come back to haunt you are the memories of when you, also, made a judgement about another person in public.  Righteous indignation mixes with humility and all you want to do is get out of wherever you are as quickly as possible.  But you can't escape every day life.

7.  You grow weary of everyone else's opinion.  Because there are so many of them.  There are those who are certain they know how "this" happened.  There are those who are certain they know how to "fix" him.  There are those who don't think you do enough.  There are those who believe you to be a saint.  There are those who believe your child's very visible difficulties allow them to have an opinion over your finances, his education, your marriage, and even your decision to bear another child or not.  Opinions abound, but your patience may not.

8.  But mostly, having a child with autism, is LOVE.  A love that you, if you are a parent, can probably imagine.  And a love that you can't imagine if you don't have child born with a bulls-eye in a big, bad world.  Unconditional doesn't begin to cover it.  Limitless.  Earth-moving.  Making you question everything you know to be true about God and man.  And that kind of love will haunt you ever moment of every day.  You can see it just behind the eyes of every special needs parent on the planet.  We are filled with a love we never could have predicted.  We are filled with fears we never could have imagined.  We are, quite simply, at capacity most every day.  And, yet, when inevitably called for, we find that capacity expands.  We aren't better parents than those of typical kids.  We aren't saints.  And our children aren't lucky to have us.  We are lucky to have them.  Because, despite all the very challenging aspects of having a child with autism, none of us will walk away from this life without having grown - merely from having loved them.  Having become more than we thought we could be.

Not Coincidence

This past week we spent an amazing week at the beach, at Watercolor, Florida (more pics and stories on that later).  It was a MUCH needed break from our daily routines and busy schedules.  I drove down last Saturday with the boys and my sister and daddy Chase flew down Wednesday night.

I can't really say this was a vacation because I have not been this exhausted in a LONG time!  Chase woke up the first morning at 5:45, the second morning at 4:45 (yep! you read that right), and before 6:30 every other morning the whole trip!  I shared a room with both boys, so guess what, we all got up when Chase did every morning!  And once he was up, he hit the ground running and didn't stop until he crashed at night...LONG days doesn't begin to describe it, but I wouldn't change this last week for anything.  Chase knows how to make the MOST out of every minute that's he's awake, that's for sure!

Despite the early mornings and non-stop GO GO GO I loved every second of making memories with my boys and my family.  My sister, dad and mom picked up the slack before Chase got there and I could not have done it without them.

Little Chase absolutely LOVED the beach, and the ocean especially!  He spent HOURS every day running through the crashing waves and laughing as they crashed in to him.  It made my heart full.

Miles didn't love the beach so much, but he loved all the attention he got from everyone and had just as much fun hamming it up for everyone.

A few days in to our trip I was holding Miles by the ocean, watching Chase run in and out of the waves, when a girl walked up to me.  I had noticed her earlier in the week sitting in the beach chairs near us.  She came up and said, "Excuse me, but does one of your sons have Autism?  My husband said he had overheard a mom with 2 young boys say that her older son had Autism and we just found out that our son may have it too, so I wanted to ask and talk to you about it, if it was him?"

The next few minutes of conversation are kind of blurry.  I'm sure even more so for her.  I was trying to sum up everything we have gone through in the last year and half, while my mom was talking at her, and she was asking questions...I really just wanted to reach out and hug her.  This sweet, vulnerable, overwhelmed mother was grasping at straws trying to make sense of this whole new world of Autism.

It threw me right back to October 2012, when we were last on that same beach with our boys, and right before we had gotten an official diagnosis for Chase.  All those emotions came flooding back to me and I remembered how scared and worried I was.  All the "What ifs?"

I was telling her (Andi) about Chase's iPad program Proloquo2Go so I told her I would go get his iPad to show her and come sit with her for a while and talk.  When I got to her chair she was talking to another couple next to her (Brandy and Pat) who also had 2 boys ages 3 and 5.  Well it turns out that Andi's husband had not overheard me, but had overheard Brandy and Pat talking about their oldest son.  After we got over the shock of what a small world it is, that we would all be dealing with Autism and all be brought together to this beach to meet, we spent a good hour talking and hearing each other's stories.  We exchanged phone numbers and emails and quickly realized we all needed each other, complete strangers, in different ways.

Brandy and Pat live in Louisiana and are more seasoned parents than Chase and myself.  They are such wonderful examples of patience, kindness, and Godly role models for their boys and the people they meet.  I could tell off the bat that they would be people we would look to for guidance and reassurance down the road, and people we would hopefully remain friends with long after this meeting on the beach in Watercolor, Florida.

Andi and her husband live in North Carolina and have a 2 year old.  He has not gotten an official diagnosis at this point but is in the early intervention therapies and they are on top of it already. Andi reminded me soooo much of myself a year and half ago.  Like I said earlier, I just wanted to hug her, and hold her, and cry with her, because I remember how lonely and stressful those months were right before and right after we found out about Chase.  I felt so alone and so scared and I can only imagine that's how she feels too.  She, like myself and I'm sure many other mothers, has spent countless hours reading and researching and trying to find answers to her questions.  She said that she didn't know anyone who was going through this or had been through it, who she could talk to, so of course Brandy and I offered to answer any and all questions she might have, ANYTIME.  I hope I can be some guidance and a listening ear to her, just as I found those strangers to be those things for me.

When you are dealing with your child having Autism it is a lonely and scary place.  Most of the time even your own families don't understand what you are dealing with and going through, which makes it even harder.  So in the midst of the worry and stress and loneliness, you reach out to anyone who you think may be able to relate, just so you don't feel so alone in this journey.

I do not think that these 3 couples from Tennessee, Louisiana, and North Caroline, all meeting on a beach in Florida is a coincidence.  I have no doubt that God put us all there at the same time for a reason.  We all had an instant connection and bond that will not ever be forgotten.  This chance meeting, is not a chance at all.  God orchestrated the whole thing and put us all in each other's lives for different (and much needed) purposes!

It still blows me away to think about how the whole thing happened and how the whole thing played out.  I am so thankful for the community of people that Chase has brought me in to.  This community of faithful fighters.  Even if some parents don't have the same "Faith" as we do, we all have faith in our children and a faith that keeps us fighting for them daily!