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.