Wait for the Lord

Ok, so I have been trying to complete this blog post since last Wednesday...it was then that Kai got sick and ended up with Croup and then Cade came home with a fever on Friday afternoon.  Oh, and did I mention Eric was out of town??  Thankfully my parents came in town and were able to distract a bit from the cries of "Mama" that enundated this house!  And then we got a last-minute cancellation call to the specialist we were scheduled to see in Asheville - that's another post.  A crazy few days for sure.  The kids are still not feeling well, but I'm stealing this brief moment in time while they're sleeping to hopefully finish this post!  If you don't see this on Tuesday then you'll know it didn't happen! :)

I have been doing a wonderful Bible study called "The Call to Discipleship" by Erilynne Barnum.  It is taking my friends and I through the Bible and we have been shown the most unbelievable truths that have always been there but that we have never discovered.  Last Tuesday night we were in Genesis 18, the story of Abram, Sarai, and Hagar.  And as always God nailed me with His word...

I'm sure many of you know the story, but just as a refresher it goes like this...God had told Abram that he and Sarai would have a child.  Both were old and well past child-bearing years - I'm sure that's why Sarai laughed - but they waited and year after year Sarai was not expecting.  Finally Sarai decided that, since it was not unusual for this to be a common practice in that day (like a surrogate mother), since Hagar was just there and apparently young and fertile that maybe God expected the two of them to take matters into their own hands and use Hagar to have their child.  Because of this decision, because Sarai and Abram did not wait on God's timing, the world is still feeling the effects.

So God was definitely speaking to me here.  I think that waiting on God's timing is my biggest struggle in life.  I am a "want it done yesterday" kinda person (ok, with a bit of self-procrastination thrown into the mix, I'll admit!).  I think the hardest thing to do after I actually ask God to lead us down the right path is to actually allow Him to do it. 

Having a special needs kiddo has turned me into a detective.  I am constantly trying to research the lastest and greatest ways sensory kids are being treated, what the latest findings are, and what the best strategies seem to be.  I am always searching for what we should be doing that we are not, and then trying to figure out how we can begin doing what we should!  It's a little irritating at times, even to myself. 

And while I am thankful that God gave us such a wealth of strategies and means to find all of this information, it is extremely hard for me not to take it and run with it.  What am I lacking??  The ability to stop, ask, and wait and listen!  The ability to wait on God's timing...and the ability to accept it.

So as I continue this journey with Cade, and embark on our next big step to try to heal him, I will fervently try to give it up to God.  And to wait on Him...all the while seceretly hoping that His will might line up just a little with my own...

The little big deal

Yesterday was picture day at Cade's school.  Now for most the only reason that is a big deal is because we as moms have to make sure that our child wears something that will hopefully match and be free of wrinkles, while also thinking about what color might look best in those standard backgrounds that school photographers bring.  Oh yeah, and making sure your kid has a fresh haircut.  We forgot the haircut (they are disastrous and I'm waiting as long as I possibly can!), and I was actually more worried about finding something Cade would be comfortable in (pants with buttons aren't too user-friendly for us these days!).

Cade, though, was worried about lots of other stuff.  Now I cannot see inside of his head (ohhhh if I could...), but I could almost read the anxious thoughts all over him.  The conversation went something like this...Me:  "Cade, today is picture day at school.  So try to smile when they take it, ok?"  Cade:  "I don't like picture day."  Me:  "But it'll be fine, and they will just take one picture of you and one of you with your class...that's all."  Cade:  "I don't want to get my picture made."  Me:  "It's fine, Mrs. McTeer will tell you exactly what to do, and all of your friends will be doing it.  It's no big deal."  Cade:  *sigh*

Enough said.  Now I try to walk the fine line between giving him enough information to help him know what to expect but not giving him too much information to make him anxious.  And frankly picture day is a toughie.  Cade doesn't handle change well (ok, that's the understatement of the year...), and I'm quite sure that all he was thinking about on the way to school was about what was going to happen, where he was supposed to go, what would his day look like...I could see his brain ticking through the many fears that were bubbling up inside of him. 

So I didn't really say much else.  I just put the boys in the van and we were off.  We parked and began our walk up to the sidewalk where Cade meets his class and his teachers.  The school bus carrying many of his friends was just pulling away, and the class had already began to gather on the "yellow line" to get ready to go in.  Cade hung back a little, but just for a very brief moment...then he made his way to the line.  I knew he was worried, probably really worried, and I knew this would be tough for him.  As he fell in line his teacher said, "Is everyone excited about picture day?" 

I felt my breath catch in my throat as I heard my little boy quietly say, "No."  And it was all I could do to stand there as I saw his mouth curve and the big alligator tears drop from his eyes.  And then my heart just about broke in two when I watched him attempt to get himself together and wipe his eyes before anyone noticed his crying.  I'm pretty sure I held my breath as I tried to decide whether to take Kai and begin our walk back to the van or wait to make sure he made it inside ok.  I knew he was struggling, and I was definitely struggling, and I decided that I should just make this easier and leave him with his friends and his capable teachers.  I quietly said aloud that he was anxious a little just so his teacher would recognize his fears, then got Kai's hand and began to herd him to the parking lot.

On our way I looked back, and Cade gave me a small little wave.  Ok, so I just about ran back and grabbed him and scooped him up and took him back home with me.  Of course he would be fine, he was fine...but I must tell you that it was one of those mommy moments that tested me greatly!  I prayed for him to get his anxiety in check, and for him to actually smile a little in his picture, then hurriedly put Kai in the van before anyone else in the parking lot wondered why I was shedding tears standing there. 

But I also celebrated Cade's victory with him...he worked hard to keep himself together and try to be a "typical kid" - just a few months ago I cannot imagine that he would have done anything but scream and run back to me, or at least be very disagreeable!  It reminded me of how far he has come, and I could not have been more proud of him than I was at that moment.

Cade survived picture day, and I actually don't think it was a big deal at all when everything was said and done.  Another victory under our belt.  And although we are still working through our days just one at a time, I know that every change that Cade manages on his own is just one more step closer we come to beating these disorders.  For one day I am sure that we will look back on days like this and think that they are not really a big deal at all.

Waiting for directions

The last few days have been tough.  Cade seems to have been dealing with a setback...we've been trying to figure out what has happened but it's a little like doing a jigsaw puzzle without knowing what the end result is supposed to look like.  He seems to be dragging a bit, so we're pretty sure he's had a virus or something going on.  And when any illness or threat to his immune system hits his body we have figured out that it causes his sensory deficits and his autistic behaviors to go crazy.  Especially his OCD.  He is back to not being able to stand a page being wrinkled, he cannot stand for Kai to even touch him a little (his tactile defensiveness is really bad), and his meltdowns have been bad.  We just cannot seem to make him happy,

These times are hard...it's hard to watch him regress after all of the progress he's made.  But it's comforting to remember that hopefully this is only temporary.  From the research I've done and in talking to other moms all have told me that the same thing happens to their sensory kiddo.  I heard from a dear friend in the DC area just today discussing this very same thing, and she'll never know how comforting it was to have a kindred spirit going through it, too! (thanks, Melanie!)

But this time we are a little more prepared....we've been to STAR and know just what things seem to set Cade off during these times.  We have truly learned how to play with him, and are working hard to give him the sensory input he needs to at least help him regulate a little.  Co-regulation is what they call it...we are working to basically regulate his sensory system for him because he cannot regulate it himself right now.  Again, something I never expected to be doing during this whole "parenthood ride" but necessary none the less!

We are also much more prepared at home.  Through some generous help from dear friends of my parents we have been able to set up our own Sensory Playroom at our house.  And it is awesome!!  We began working on it before we left - moving our furniture to another room in the house and clearing everything out.  But after going to the STAR Center we found out what we really needed to include that would specifically meet Cade's needs.  His strongest sensory deficit seems to be his vestibular and proprioceptive systems - his need to climb and crash is tremendous!  Enter "Lycra" ...

Lycra is basically a material made from polyester and spandex and stretches...think bathing suits.  We were introduced to it many months ago from Kelly, Cade's first OT.  There they had a swing made from Lycra which allowed him to curl up inside and swing.  Then this summer Heather brought over a large piece of Lycra fabric, and we really saw how powerful it was for Cade.  It was very calming and he loved to wrap himself completely up inside of it.

The STAR Center had the "Rainbow Room" - which if you were keeping up with us then you heard about!  That room was extremely powerful for Cade...he could climb the fabric and hang out there...very calming for him.  So when we got home and were able to recreate a version of this in our new therapy room we were thrilled!


The Lycra literally hangs from our ceiling...I'm quite sure this old house never thought it would be used for something like this!

We installed the ropes to give Cade something to reach for.



A testament to his hard time right now...he looks extremely miserable, but he really does love it, I promise!



There is no question how Kai feels about it...he LOVES it!



We also installed a Lycra swing.  I cannot tell you how wonderful it has been...Cade get inside and swings and you wouldn't believe the communication we get from him while he is swinging!  It is so amazing how connected his communication and connections are to what his body is feeling.  It is very relaxing and he has fallen asleep inside several times.  And Kai loves it, too...and except for the single time that Eric was swinging him just a little too long and he got motion sickness, all has been well!

So I am still encouraged even though Cade is struggling right now.  Because I know knowing is more than half the battle when it comes to Cade.  And the knowledge we gained from this summer is priceless.  So I will get myself up and dust myself off once again, knowing that God will swing Cade once again to the other side.  And I will wait yet again to see what miracles will happen...because it seems that each time the road becomes a bit bumpy that means God is about to take us on another wild ride.  So, as the song "Here We Come Again" by Dolly Parton floods my brain, I buckle my seat belt and wait for directions fron above.  I'll keep you posted as to where the ride takes us this time...

Fellow Mother Warrior

Ok, so I must warn you before you read...I am about to vent.  My intention is not to offend, and many of you may not agree with what I am about to speak to.  But I feel I must speak it anyway...because it is weighing so heavy on my heart.

Many of you know, and I have alluded to it already, Cade received the diagnosis of High-Functioning Autism in June just before we left for Denver (in addition to his SPD).  I didn't really address it much...we were so busy planning our trip and there was really nothing that we could do that would make any difference before going.  So I pushed it to the back of my mind and continued to gear towards our intensive therapy this summer.

I wasn't surprised at this diagnosis.  Cade has had what I have called quirks for some time.  His SPD is so severe that it is always his primary nemesis.  And even though SPD is not officially considered on the autism spectrum, there are so many facets of the two that are the same I think it is almost natural, at least for Cade, that he has them both.  Let me make it clear...Sensory Processing Disorder is not autism  But I do believe that Cade suffers from both of these disorders.  Which, by the way, makes for a fun time...

So therapy at the STAR Center was fantastic and the results we are seeing are even more fantastic...I promise to talk about those results -- that's just not my focus in this entry.  School has started, and we are so happy with how Cade is doing there.  God has blessed us richly with so many things over the last few months...I finally just now have time to stop and just deal with the Autism.  And in dealing with it I have found dire unbelief and disgust...and just plain anger.

I don't mean the "I'm angry that my son has Autism" kind of anger.  No...I am angry about so much more...so much more that I have discovered, through researching and talking and sharing with other moms...I am just plain sick to death MAD about what I am discovering.  I'm "mommy mad" -- which, by the way, has its own rating on the official Richter Scale! :) 

I have had this gut Mommy intuition that there is something more that we need to be doing for Cade...something else to help him.  Therapy has been wonderful, and going this summer has been so life-changing for our family...but I just couldn't shake the feeling that there was something else we needed to be doing that was medical - something that the therapy to treat the symptoms of his SPD just wouldn't touch.  So I started researching...and I probably found way more than I wanted to know...

So just so you know before I go on, I am not and have never been a super organic holistic kind of medical person.  I have friends who are, and they're great at it.  But I have just never been the type to explore the whole "nonconventional medicine" avenue.  I have always been what I thought was educated about my kids' medical care -- especially with Cade and all of his medical issues early on.  I have never thought myself to be one who blindly did what the doctors told me to do without at least thinking that it was probably the most right thing to do.  So it was only natural for me to get both boys vaccinated on time...

I bet you're saying, "Here she goes...she's going to go off on the don't vaccinate your kids kick!":  I'm not...I'm really not...saying that.  I just simply want to share with you my story...the story that I have only put together very recently...because I want to honestly share my thoughts about our life at this moment in time.  And y'all know that I will always share honestly here...you can take it or leave it. :)

So in my research at the public library I ran across the book called Mother Warriors by Jenny McCarthy.  Now I don't proclaim to say that Jenny McCarthy is a Christian, that she's the most wholesome actress or person...but I do know that she's a mom who will do whatever it takes to protect her little boy.  And sometimes I think experiences like ours make us all kindred in that way...that sometimes just jumps ahead of other qualities because we are so alike in how we feel out our kiddos.  Anyway..,.Jenny's book is the sequel I guess to her first book where she gives the story of her son, Evan, who was diagnosed with Autism.  Now I haven't read that one...I just haven't felt emotionally able to take it on yet.  But this book is different.  It is advertised to talk about how she, and other moms from around the country, supposedly "cured" their kids of Autism.  It happened through simply treating a medical problem instead of a brain problem.

Before you go and say I've gone off the deep end, because that's what I would be saying, just let me share what I read here.  So apparently, and this is documented, at least the HUGE majority of Autistic kiddos have severe belly issues...I mean real gut issues...that have plagued them since very young.  For example, many have severe diarrhea, constipation, reflux and throwing up, severe food allergies...just huge problems with their gut.  I tell you this first because Cade had these problems.  When he was born it was evident from his terrible spitting up that there was a problem with the milk.  So we changed him to soy formula.  Then he was extremely constipated...I remember literally sitting in the doctor's office parking lot on the phone with her telling her I was coming in the door right this minute because I was so sick of  them putting me off.  When all was said and done it was determined that he also had an allergy to soy, and we promptly put him on a hypo-allergenic formula that was to magically fix all of his belly issues.

Now let me just shorten this tirade to say that his belly issues, looking back, were never really fixed...he threw up his whole first year of life and then had diarrhea his whole second year of life.  He had diarrhea for 90 straight days when he was almost 2.  They did an endoscopy and a colonoscopy, and even took biopsies...only to tell us that he had "Toddler's Diarrhea" - which seemed like a made up answer meaning "we have no idea what is causing it."  He had been diagnosed with a casein/milk protein allergy at shortly after he turned 1...it was always something.  At 3 they determined that his milk protein allergy had gone away, and it seemed true because when we fed him milk products all was ok with his belly.

So I identified with the moms in the book...his gut problems were always there and they were very mysterious.  And he was born with them, at least in part.  As I read on they talked about the fact that there was a point in their child's development when he or she just seemed to "turn off".  I remember worrying early on that there was something going on with Cade...I even called a friend of mine who son has Autism with concerns about infant hand-flapping.  But that was really his only symptom...he met all of his milestones.  He had several very clear words at 11 months old, and he was happy and well-adjusted.

Sometime between 12 and 13 months old Cade stopped talking.  He didn't really withdraw, he just lost his words.  He would still interact with people, but every single word he said came out to be "Ba."  I immediately took him to the pediatrician who suggested we have his hearing tested.  The ENT discovered undetectable eardrums because there was so much fluid.  They promptly recommended ear tubes, and he had them put in around 16 months.  We worked with him tirelessly to help him regain some words...and he did, but very slowly.  It was around that time that he began having SEVERE meltdowns...I can vividly remember him flailing in the front yard screaming.  It was always over something small...like if his wagon wouldn't turn correctly or the wheel fell off of his car.  He would run in circles, scream, crash into things, throw things...it was awful.  He would wake up from naps and be a complete mess...he would scream and cry and be completely uncontrollable for over a hour.  Eric and I finally began force-feeding him shortly after he woke up because we truly believed his blood sugar was low and causing him to meltdown.  I now believe that the eating simply stimulated his inner ear vestibular system and worked as a calming effect on whatever it was that had sent him over the edge.

I believe that the overwhelming majority of children are well...typical kiddos without any issues with their immune system or neurological gaps in their brains.  I believe that these kids can fight off the assault of the majority of toxins that seem to occur in our country.  And I believe that most go undetectable in their little systems, and all turns out great for them.

But I believe that some of our kiddos have a tendency, for whatever reason, to have a weakened immune system or neurological issue that makes them a little more vulnerable to the onslaught of these same toxins.  And I think when enough of those toxins are put into their little bodies then they have no choice to react --because the assault is just too much for them.  And I believe that when that happens a switch is triggered...and the switch is called Autism.

Looking back, I believe that something happened to Cade when he was 12 months old that caused his behavior to take a nose dive.  I think he was definitely much more fragile than we ever realized, and that fragility left him open to major problems when he was introduced to things that really shouldn't have been there anyway.  And yes, I'll say it, I do think that it had something to do with the vaccinations he received as a baby.

You can believe it, you can call it bogus...it doesn't really matter to me what you choose to believe.  I just believe that every single mom must do what she believes is best for her own child.  I can only sit and wonder what would have happened, what Cade's years so far on this earth would have been like, if I hadn't held him down on the table while the nurse poked him with what I believe altered the course of his life - all of our lives - forever.  And I believe that the artificial preservatives that kept those vaccines able to be mass produced have the same effect of those that are now being put into the foods we eat.  Did you know that in this country foods that have been genetically modified are not even required to be labeled as such?  And it just makes me sick that nobody will even listen, much less be held accountable for what is happening to our kiddos. 

They say that 1 in 94 boys in this country now are on the Autistic Spectrum.  Somewhere around 85% of them also have Sensory Processing Disorder.  Another much smaller percentage also have Obsessive-Compulsive Disorder and Anxiety, and an even smaller percentage also have ADHD.  We are a family living with all of those things.  And as much as it breaks my heart that it could have been something that, at least in part, I could have prevented, I cannot go back.  I can only look forward.  And I can be just one more voice to share our experience.  And I pray that one day soon I will also be able to share how we healed our little boy of Autism...

Again, I share this not to offend or judge.  Every parent must do what they believe to be the very best thing for their kiddo.  I just think it should really be our right  to make those decisions completely informed with all of the facts...and with the facts not tainted by what the government, medical community, pharmaceutical companies, huge chemical companies, or anyone else with ulterior motives think we should be given.  And I don't believe everything is a "one size fits all" kind of deal.  I think some consideration should be given to what we are doing and how much of it we are doing.  And it just makes me so sad to see so many of us with kids that are so sick being forced to find out this information on our own...if there is nothing to hide then put it all out on the table and prove it! 

As I took my little boy out of his new therapy swing that we have installed in out new sensory playroom (more to come on that later), the swing that allows him to self-regulate enough for his body to wind down, I kissed him an extra time.  And I simply said "I'm sorry."  For although I know that I cannot blame myself for all that has happened to Cade, I do believe that trusting in the wrong people changed his life.  And for that I am truly heartbroken.

** This is probably the one and only post I will do on this subject of vaccinations and toxins in our environment and their link to Autism.  I am trying really hard to move forward and help heal Cade...and I know that with that being my primary focus everything else will just work itself out.  Thanks for letting me vent...and feel free to chime in with your opinions, criticisms, or just plain hate mail. :) **

Regrouping for reality

What a week it has been!  We got back to Charleston a week ago...and we had to hit the ground running.  With preschool starting for Kai on Tuesday morning and a meeting with the special needs team at the elementary school for Cade, I wasn't really sure which way was up.  I have spent the week getting both boys started in school, trying to get unpacked, and just plain getting back to our reality here.

 Kai was very excited to start to school this year!

And he loves his new lunch box from Nana and Pappy!

On Tuesday I met with the special needs team at the elementary school where Cade will be attending PreK.  We had been agonizing with the decision on where to put Cade this year...the preschool he previously attended just doesn't fit anymore with his special needs.  We knew this year would be a critical one, and I wanted to get it started off right.  I also knew that the public schools have to meet his needs as best that they can, and there's something to be said about having a forced hand.  So the public school won out.  I have had a great relationship with the school psychologist there since May when she first tested Cade...God certainly blessed us with Ms. Beth...so I just closed my eyes and jumped with the whole school situation.

The meeting Tuesday was excellent...the school OT was there as well as the psychologist and Cade's teacher.  All were very receptive to our concerns, and the team even volunteered to create some extra helps for Cade that we had not requested.  All in all I felt very good after leaving the meeting on Tuesday -- I just had to psych myself up for his first day on Thursday.

All I can say is God intervened in such a huge way on Thursday.  Cade goes to school in what is called the "afternoon" session of the PreK there -- 11:20-2:10.  I spent the morning stressing about what "perfect" sensory activities I needed to do with Cade in order to help him be the most regulated that he could be before his first day.  I also spent some time reading a book with him called "The First Day of School" where we talked all about school and put stickers on each page.  I was a basket case...Cade was completely oblivious of what was happening.

Burning off some steam before school starts.

I have often said that God gave special needs kids the ability to be oblivious...to just not even really be aware of what was happening, just to protect them from worrying about it.  Cade knew he was going to "Big Boy School" -- we had talked about it a lot.  But when I talked about it with him on Thursday morning he didn't seem to really get it.  He wasn't nervous or anxious, just the same old Cade hanging out with me. 

So on the way to school I'm praying REALLY HARD....praying that he would not cry when I left him (and that I would not cry when I left him!), praying that he wouldn't have a meltdown when he got into class, praying that his teacher would love him.  But most of all I was praying that he would make friends...that he would fit in with the other kids, who had already been there two weeks and all knew each other.  You see, when Cade meets a new person he typically will hiss or growl at them.  No idea why - it's just what he does.  And now that he's 4 that's going to be a much bigger problem than it has been before. 

So we park and walk up to the sidewalk to wait for the teacher to come out and get the kids to walk them to class.  As I walk up I check with another mom there just to make sure we're in the right place.  That's when she asks about whether this is Cade's first day.  And then the Heavens opened...God sent little Jennifer into our world.  Her daughter walks up to Cade and says, "Hi, my name is Jennifer.  What is your name?"  Ok, so now I'm holding my breath and probably even gritting my teeth, just waiting for the hiss that is sure to follow.  Cade says, "My name is Cade."  You could have knocked me over with a feather. 

I continue to stare at him as he runs around with Jennifer, gets on the yellow line and waits for the teacher, then engages in conversation with her and shows her the book that he has placed in his backpack.  Other than being completely enamoured by the school bus, which he insists he wants to ride, all was pretty calm.  The teacher comes out, the kids all turn around and follow her....and Cade is walking in line taking to Jennifer and the other kids as if he's been there every day of his 4-year-old life.  I swallow the lump in my throat long enough to say to his teacher, "I think I'll just let him walk in from right here," and turn around and head to my car.

Cade is digging in his backpack...

to show his book to his new friend!

Of course I prayed for Cade throughout the rest of his short school day, but he got into the van in the afternoon hot and tired and very hungry, but with no issues from school.  Friday his teacher let me know that things had gone very well, and he was even able to talk about his day to us that night (ok, so all we really know is that they had cookies and carrots for snack and there are something called "work-together horses" on the playground, but that's progress...).

It has taken me this entire week to process coming home from Denver.  I have felt overwhelmed with our changing journey...a little like a deer in the headlights.  It has been a little tough to come home from Denver, where everything was pretty safe, to being on our own here.  And starting school has been emotional for me -- after our experience over the last year it has been hard to trust someone else to take care of my little boy and help him with his special needs.  But I have regrouped, and I have survived our first week.  Now on to our new reality...