Making Messes

I posted some pictures to FB of a few of the very many messes Philippe makes. Just a minuscule representation of what it's like to raise a kid with autism.

Some have asked a simple, curious question, essentially, 

"Do you discipline him? Does he understand?"

Here is my answer:

SO many people are unaware or uneducated about autism, but they're too uncomfortable or shy to know what to do/say, or even just ask questions. It's no one's fault really. I didn't know anything about autism before having Philippe, and we are all still just learning as we go.

I hope this answer helps, please let me know what other questions you have!

Short answer:
Yes, oh YES, we use our many versions of "discipline" with him (before, during, and after behaviors). And we are not exactly sure what, or how much, he understands.

Long answer:
Basically, Philippe doesn't do things just to be naughty, or misbehave on purpose most of the time. Even though he's 5, developmentally his "age" is about 12 months (he can walk, but doesn't talk yet, and he plays with baby toys and for the most part he behaves/acts like a baby between 9-18 months old).

So just think of a baby that can walk, but not talk yet - and picture them 4 1/2 feet tall. Image the messes they would make! That's Philippe.

We work with him COUNTLESS hours- "disciplining" him, showing him and teaching him the same things over and over again hundreds or most likely thousands of times.
From 8am to 4:30pm we have several professionals- therapists and a nurse, that take shifts working with him one-on-one every single day, either in our home or at school with him. And the school he goes to is a special one for "unique" kids that need extra attention and help learning.

Every day Philippe works on everything from his behavior (throwing things, biting, breaking things, throwing tantrums) to things like learning how to dress himself, feed himself without spilling or making messes, how to play with blocks, how to roll or throw or catch a ball, how to match colors, how to put away his toys when he's done playing, and SO many other things most kids learn naturally. We also work on him learning to talk. He will repeat a few very basic sounds, or say a basic sound when we ask him a specific questions, but he has zero independent or spontaneous sounds.

For example, if I ask him if he wants a drink, he might shake his head "yes" or "no" to indicate, or he might make the sound "wa" for water and shake his head "yes" to tell me he wants some water. But if he's just in his room or playing with toys on his own and he gets thirsty he won't just walk over and say "wa" to ask me for water. Just like a baby, he might just start crying or throw a tantrum- and then, just like a baby, I have to try to guess and figure out why he's upset. (Is he hungry? Is he thirsty? Is he tired? Is he too hot/cold? Does he want a certain toy? Is he just bored? Is he uncomfortable for some other reason? Does he want to go somewhere else? Does he need his diaper changed? Does his tummy hurt? Does he have a headache?).

Very recently he learned that when he is thirsty if he walks over to me and gives me a cup- I will get him a drink of water. He also learned to push me to the kitchen and either shove me into the pantry or the fridge. (He's not very gentle about it. And he's NOT patient either. When he wants it, he wants it NOW, regardless of where I am or what I'm doing).
When I open the pantry or fridge door I have to guess what he wants. I point or pick up each item one at a time and ask him "do you want this?" "Do you want chicken?" "Do you want carrots?" "Do you want a banana?" "Do you want blueberries?" "Do you want sweet potatoes?" "Do you want turkey?" And each item I ask about, he'll either stare at me blankly or shake his head "no", until I finally figure out what he wants and then he shakes his head "yes" or gets excited and claps his hands and starts to jump up and down. Once I know what he wants, he has to "ask" with his sign for "please" and then make a sound to ask for it- I'll make him say "ba", "ma", "vuh", "wuh", "duh", whatever sound he can make that's closest to the thing he wants. So if he wants a banana, he signs "please" and then I say "banana? Buh" and he repeats "buh" and shakes his head yes, then I give him what he wants- in this example, a banana.

When he makes messes- if it was an accident usually I just clean it up (because it's just easier and faster). If he threw something, or a stack of things (he will sweep his arm across the counter or table and knock/throw everything to the floor) then one by one he has to pick everything up. He doesn't pick up more than 1 thing at a time, so it takes a while, and a whole lot of patience. He knows he is not supposed to throw things because he is angry or frustrated, but he still does it, and then the consequence is he has to clean up the mess- every bit of it.

Philippe does this for hours. It looks like he's studying the table and chairs- the angles, the shadows, their weight and how they stack with each other. He's not making a mess to be mean or naughty on purpose, but it does destroy our furniture, and the walls, plus whatever toys or dishes he smashes in the process.  And we are always afraid he will accidentally hurt Belle, Dominique, or Davis (or dog), if they just happen to be next to him when he flips the table or a chair over. 

Let's be friends...

How many of you are friends with your parents? How about with your kids?

For the past 5 years, I've been completely wrapped up in raising a little champion with special needs. Spending relentless hours a day teaching him basic skills that come naturally to 'Nero-typical' kids. He's always in "survival mode", and anything beyond that is basically out of the question, if not impossible. He's always exhausted. I'm always exhausted. 

Along the way, 2 1/2 years ago I had another beautiful angel. Though my husband and I always had fears lingering in the back of our minds, by 18 months of age we knew she did not have special needs. 

As she continues to develop into an autonomous little person, she demonstrates more and more every day that she needs me to parent her like that of any "typical" kid. But over the past year I've realized I don't know how to do that. So for the past 6 months or so I've been on a new journey: trying to figure out how to be a parent of a child without special needs, starting from scratch all over again. 

My quest led me to the book If I Have to Tell You One More Time... The Revolutionary Program That Gets Kids To Listen Without Nagging, Reminding, Or Yelling by Amy Mccreedy. It reiterated a suggestion my friend gave me 2 years ago: spend 10-15 minutes of one-on-one time with each individual child every day. The book takes it a few steps further, calling it "Mind, Body, and Soul Time" (I call it "special time" with my kids). She says to spend the time distraction-free in a child-like ego state focusing your entire mind, body, and soul into playing with your kid, doing whatever they want to do for 10-15 minutes. 

I've found this time each day with Belle is super easy and really fun! She just tells me what she wants to do, and we do it. 😊 It flows naturally. We color, play with blocks and 'build the tallest tower in the world', jump on the mini trampoline, or just run around the living room chasing each other and giggling. 

I've found that my special time with Philippe has been much more challenging. Truth be told, some days I don't even want to do it. Why endure 10 minutes of torture for both of us? Most days we don't even make it to 10 minutes because the time ends abruptly with a tantrum where he's either biting me, head-butting me, kicking, screaming, or crying. In her book, Amy discusses how the time should be led by the child- it's pointless if the parent spends the time teaching, parenting, or directing (meaning during the designated special time, any therapy with Philippe is out). I try to let him dictate how we spend our special time. One day for 15 minutes we opened, closed, opened again, and closed again, 3 suitcases nestled inside each other like Russian dolls. Another day we stacked, unstacked, and re-stacked the trays from my vegetable steamer. Another day we sat on the floor and pushed the same button on a toy over and over and over again. If I try to change the activity or even adjust it a little bit Philippe gets irate, resulting in a tantrum and terminating our special time. Some days I just sit quietly in the corner of his room and watch him do... whatever he's doing at the time, just sitting there in silence spending time with him. My 21st century preoccupied, technology-driven, perpetually-distracted brain usually gets board after 3 minutes and I move on to cleaning something or scrolling through Facebook on my phone, instead of spending time with my son. 

Today was different. Today was a miracle. Today was FUN! Philippe and I were sitting on the kitchen floor, just staring blankly at each other. I said a few unimportant words just to fill up space in the empty air. Philippe grabbed my knee and pushed it. He grabbed my other knee and pushed it too, studying the way my legs bent and moved. I became his puppet. He kept grabbing my knees, moving each leg from side to side, bending and straightening my legs. I was perfectly obedient for a few minutes, moving just how he wanted me to. Then, just to test his reaction, I bent my leg instead of moving to the side when he pushed it. Instead of getting furious, he smiled. I was his obedient puppet for another minute, then I straightened my leg instead of moving it to the side like he wanted me to. This time he laughed! Could it be... we were actually playing?! This continued for another few minutes. I think we actually made it past 10 minutes! These few precious moments will forever be a special memory to me. I feel like I actually connected with my son. We both laughed. We both smiled. For a few minutes we were friends. 

Family Pictures & Autism : What I Want To Remember

A good friend texted me this:

"Can you email me a picture of your family picture with Belle crying? My brother has a daughter with autism and she is always crazy for family pictures. I want to show his wife an example of how a family picture can still be adorable, maybe even better, when you work with it."

So I emailed her this:

We took over 200 family pictures and out of all of them, this one is by far everyone's favorite. The photographer was waiting and waiting- trying to get all my kids' attention, to get them to look at her and smile. I told her "just take the pictures. If you wait until they're all facing you smiling, we won't get a single shot." Thankfully, she listened to me and just started snapping photos, and we ended up with this awesomeness:

It is a PERFECT depiction of each of us 😄

After 2 photo sessions- each 1.5 hours long, my little boy is not smiling in a single picture (and we even gave him fruit snacks, which is a major treat for him!). Most of them he's not even looking at the camera, and if he is, he was making a silly or funny face, or had his fingers in his mouth.

The reality is, OUR life is messy. It's chaotic. It's silly. It's real! That's what I want to remember.

Guess which one of the kids in this picture has autism?

Last year we took our kids to Foto Fly at Thanksgiving Point. They have 10 minute increments you sign up for, and they guarantee in 10 minutes you'll get at least 1 good picture. I thought "yeah right. This is going to be a disaster!"

One of the adults (in our case, my husband) dresses up like Santa Claus from the beard down. Nothing covers your face- so your kids see you and are comfortable because it's you, and not some stranger. I think it even makes the pictures look more *magical* because you don't see Santa's face in it.
The cookies were supposed to be a prop, but my daughter (who does not have autism) was stuffing her face in every. single. picture. 

But I still think they turned out pretty cute!

I dread taking pictures! It gives me stress and anxiety and depression! Every time I think "this is going to be horrible!"
But a couple of years ago I had a distinct image in my mind. I picture my son as an adult, without autism, able to speak and think clearly, asking me "Mom, how come we don't have any pictures of me growing up?"
I imagine feeling VERY guilty and embarrassed, admitting to him "sweetheart, it was too stressful. Because you wouldn't look at the camera and smile, and we were so worried you would throw a tantrum, or cry the whole time, so we never took any pictures."
My son didn't ask for autism. We didn't ask for it in our family either (we are NOT those people that pray for trials to learn and grow and become stronger. Trust me!)
But should I punish my kid because he has autism? Should I shut him out from the world and lock him away from society and never take any pictures of him, or of our complete  family, because of it? No way.

Now when we get pictures taken I think "we just have to get through this. Yes, it will probably be torture for everyone. But we'll grin and bear it, and hopefully get at least 1 good photo... And Photoshop is amazing!"

Helpful suggestions: fruit snacks, bubbles, toys with noise-makers or blinking lights to get kids' attention at the camera, whatever works for your family. Plus there's always straight up bribery (hey, I'm not above saying "when we're done with this we'll buy you a new toy!" That gets some smiles), and a really talented photographer (that's skilled in editing- again, gotta love photoshop!), it also helps if they're experienced in working with kids (experience with special needs is a bonus!).

Shameless plug- if you live in Utah, my husband is a graphic designer (aka photoshop whiz!) that does photography too. Check out cute pictures of our friends and their kiddos at ImageDesignByMarcel. to see if you like his style:

https://m.facebook.com/imagedesignbymarcel?v=timeline&timecutoff=1250719055&sectionLoadingID=m_timeline_loading_div_1262332799_1230796800_8_&timeend=1262332799&timestart=1230796800&tm=AQCgK_e1l_PTp8Fn 

From the bottom of my heart, I really hope at least something I said helps you. More than most people, I get what you're going through, and it's not fun. But even the less-than-fun moments can be magical and beautiful, and sometimes they end up being the ones you want to remember the most. Good luck!

- Candice Cochegrus

Lots of new things for Philippe!

For the first couple years of Philippe's life we used to say "Every day without a seizure is a good day" when he was having 1-3 seizures per week. Then we got to the point we could switch the word "day" with "week" when he was averaging about 1 per week. A few times over the past year we've been able to say "month"!

Today is one of those days we can say "MONTH"! Philippe's last seizure was on Christmas morning (December 25). Since then, it has been a great seizure-free month!

We got to go to Mexico to spend 2 weeks with Marcel's family for Christmas and New Years. There were a lot of emotions, as this past year has been one of the toughest for the Cochegrus family, but the most prevalent emotions were JOY and gratitude.

When we got home, my mom and dad got to come visit for 10 days! I LOVE my parents! They are the most supportive people I know, always loving all their kids no matter what choices we make and where life takes us. I know I can always count on my parents to be there for us. The thing that has impressed me and touched my heart the most the past few years is what caring, sweet, and patient grandparents they are! It amazes me every time we're with them! From the time last summer when they drove from Virginia to the hospital in Cleveland to spend just a couple days with us while Philippe stayed in the Epilepsy unit for over a week. Every time Philippe pulled my dad's glasses off his face he always responded with something kind or even said something silly or made a funny face. This past visit my dad went to Staples and asked if he could take Philippe with him. I had total trust and faith in my dad that he could handle Philippe while shopping, which is something I can't even say for myself half the time (which is why I never take Philippe shopping!). When they got back my dad said "he did great! He sat in the cart, and he only grabbed one thing! Then we walked around the parking lot with our arms out while we looked up at the sky and were slowly spinning around. It was wonderful! He loved it".

My parents left on Sunday. On Sunday we also started the Brain Highways program with Philippe. I don't want to speak too soon and "jinx" anything, but the past week has been AMAZING! Philippe has done more new things in the past 4 days than the entire past year combined!! Ever since Philippe had his first seizure at 5 months old we've been doing lots of different therapies, programs, and diets with Philippe. I've never seen any of the others show so much progress so quickly! Maybe it is just a "coincidence" that he started doing several new things just 4 days after starting Brain Highways, but it's the only change we've made lately. In his other therapies he's been working on things for several months with little to no progress, but when he woke up on Wednesday morning it was like someone flipped a switch in his brain and things were just clicking! You can see in his eyes he looks more "there", like he's more focused and can understand what you're doing and saying, and he's responding to what you want him to do like it's no big deal. He has been making 2 new sounds (he was only making 4 sounds before!), he started trying to jump and gets excited about it (we've been asking him to jump for a few months in therapy now, but he always just stood there with no response at all), and Wednesday morning he picked up 1 grape then reached and grabbed the other grape that was near it on the floor too! He has never, ever reached and grabbed more than 1 thing at the same time like that before! It has been incredible and so much fun!

Yesterday he did REALLY well at horse therapy! The past few weeks were tough for me because he would just there on the horse not responding, not signing "go" or "stop" or showing any interest in whatever activity they were doing. But yesterday he did awesome! He was signing and making sounds right away when they asked him! And for the first time ever he was actually looking over and paying attention to the other boy that rides at the same time as him!

Today has been fun too! Philippe started a swimming class just for kids with autism. He was totally content just sitting in the water hanging out. But when they were supposed to be splashing and kicking, Philippe was doing it too! He was laughing and squealing and having so much fun! He even looked over to Marcel and me a few times and was smiling really big! He usually doesn't look very far past what's right in front of him, and we were about 25 feet away! I was loving just sitting there on the side watching him have so much fun and just being with other kids :)

I can tell there are lots of great things to come for Philippe! I'm sure he will still have tough moments with tantrums, biting, kicking and screaming. And I'm sure I'll still have tough moments where I lose my patience, or break down and cry for who knows how long. But I know that every day from here on out is going to be AWESOME!!!

A day of THANKS

On a day like today, it's hard to not be surrounded by everyone we love. It's not that we didn't get invited anywhere, surprisingly we did. I say "surprisingly" because after so many times of turning down invitations, we would understand if they stopped altogether.  The truth is, we realized a few years ago we have to be realistic, which means that we spend nearly every holiday at home alone with our little family.
I'm thankful that when both of our kids were throwing tantrums all morning (beginning somewhere around 2 or 3am when Philippe first woke up), we just rolled with the punches, like we do nearly every day. When the food was ready, half of which we bought from the store and half we made at home, we just sat down to eat without looking at the clock to adhere to a schedule or sitting around salivating while we waited for late-comers to arrive. We didn't completely stuff our faces because we bought all the food ourself and it will simply sit in our fridge until it's gone, providing no pressure to eat until we feel ill. Throughout the meal while Belle was refusing to eat nearly everything except turkey and jello salad, it didn't matter. And when she was fussy and wanted a nap, I put her down in her own bed where she promptly giggled then curled up to her favorite blanket.
The part I felt most grateful for today was at the end of the meal when Philippe dumped his glass and got it all over his head, the floor, and the table, and Marcel and I just laughed. We didn't have to feel ashamed or embarrassed, or offer a lengthy explanation of why our son "is the way he is" or "doesn't understand". When we finished eating, we put the food away and cleaned up together almost silently, husband and wife working side by side toward a goal to put our house back in order- or as close as it can be with our 2 sweet, unpredictable, wonderfully chaotic children.

To all our relatives, friends, neighbors, and loved ones near and far, we are truly grateful for you! We are thankful for your love, your support, and especially your concern and understanding. We love you all! HAPPY THANKSGIVING!!!

CELEBRATE!

Philippe has been seizure-free for 1 months! (He used to have 1-3 a week.) How fitting to celebrate this special occasion today. July 24th is the holiday in Utah we celebrate Pioneer Day. In 1847 after 17 months of travel Brigham Young lead 148 pioneers into the Salt Lake City Valley. After their long journey, even though the traveling had finished, their work of establishing an entire functioning community in the middle of a desert had just begun! And so it is with us. 

Now that we know and understand WHY Philippe has had seizures, along with his many other health issues, and HOW to heal him, we have reached the end of our journey searching for answers. Yet, at this point, when we look to our immediate future, some days the work ahead of us seems impossible. The length of time required on the GAPS diet to completely heal the body and reverse all the damage caused by gut dysbiosis is usually 2 years. I have a feeling it may take even a little longer for our son, but it will be worth it! Just as Salt Lake is now a major city in the US and even the world, I know Philippe's future will be filled with greatness, wonder, joy, life, and health!

The BEST part about it all is the feeling of FREEDOM, and in a sense POWER, we now have. We are no longer slaves to Philippe's seizures, medications, tantrums, or inability. I used to feel so helpless and terrified every time Philippe fell asleep because I knew every time he woke up there was always the agonizing possibility I would have to endure watching my son's little body seize uncontrolled for 18-20 minutes. I would have to give him a "rescue medication" then sit by his side or hold his stiff shaking body in my arms, and pray, and cry, and sing or talk softly to try to give him a little peace and comfort, even though I knew during a seizure he mostly likely wouldn't be able to hear me at all. 

The anguish, doubt, fear, hopelessness, and all the unknowns we felt for Philippe's life and his future have been replaced with hope, dedication, and excitement! He WILL be healthy! He WILL learn, grow, talk, and keep progressing every day!

Today in therapy he was really focusing and paying attention. He's getting good and figuring out how to learn. I know the wheels in his brain are turning and he's understanding more and more and getting better and healthier every day!

Philippe the GREAT!

WOW!! Today has been an amazing day!

This post has been a long time coming (months!), but I've held off for a few reasons. Now, finally, I feel 100% ok to share everything with the world, which is a BIG deal. Of course I wish I really did have time to share everything, but I don't, and not everyone wants to hear the whole hard truth. So if you have questions let me know. I have become so PASSIONATE about health, food, and healing! Yes, I did say "healing"!! Because now with 100% confidence, after searching, medication, doctors, and diets I KNOW you can HEAL or in other words CURE epilepsy, autism, food allergies, skin conditions, digestive problems (diarrhea/constipation) and so many other diseases and "conditions" we have in our fast-paced world today.  Don't worry, I'm not trying to sell anything, and no one is paying me to write this. I'm just so ecstatic that I have to share our story! Hopefully it can help at least 1 person or 1 family on their journey to health. We are not completely there yet, but we are sure on our way!!!

"Nobody changes until the pain of staying the same is greater than the pain of change."

Last year at this time we were nearly hopeless and didn't know what to do. Philippe had been having seizures for 2 1/2 years, he was in the less-than-1 (because apparently there is no "zero") percentile in nearly all areas of development. He seemed very absent and dazed, like he was never really "with us". He didn't sleep well, he threw tantrums several times daily, and even though he was allergic to eggs, nuts, and soy, he was completely OBSESSED with food: it dictated his entire life! It was almost like he was a drunk or an addict! He had diarrhea as well as terrible eczema and a-topic dermatitis his entire life (basically he had extremely sensitive skin and always had rashes, red and white splotchy itchy patches all over his body). 

We went to the Cleveland Clinic to get their suggestion on what to do. They officially diagnosed Philippe with Autism, which threw another thing on our already-overflowing plate. It wasn't until a few months later in October 2012 that they called to tell us their suggestion and said, I quote "Philippe's best chance at life would be to do surgery to remove 1/3 of his brain". Then after that they would keep him on daily medication and keep monitoring his EEG's for a minimum of 6 years. In the mean time if the surgery didn't change his seizures at all, or at least significantly, they would then do a follow-up surgery to remove the rest of that half of his brain. Then at that point if his seizures hadn't changed at all, there would be nothing else they could do, except try different medications until hopefully something helped. The upside is there was a chance Philippe's seizures might decrease or even stop altogether. The downside is there was a 100% guarantee he would literally have less of his brain! Which means half of his body would be weak, along with a whole slew of other issues for the rest of his life. 

We did NOT take this decision lightly!!! After a lot of talking, struggling, and praying at first we decided just to wait and do nothing until after the holidays. 

Well in December after MANY hospital visits (at least weekly, and a few times we were there nearly every day!) I complained on Facebook that my kids were getting sick ALL the time! A dear friend of mine asked if we had considered giving him Cod Liver Oil. Of course my reaction was "Ummm...  give him what??" But as I continued to ask her questions and look into it, I found out she was talking about The Gaps Protocol, which consists of Diet, regular detoxifying (or "cleansing" if you prefer), and chemical/toxin-free living. As a bonus, the founder Dr. Natasha Campbell-McBride is a Neurologist who was a Neurosurgeon for years (she has physically seen and operated on the human brain people!) but now she actually suggests NOT using surgery or medication as a means to control (they dont cure!) Epilepsy and Autism because when she become a mother her son had severe autism. So she went back to school and got another post-graduate degree in Human Nutrition and used the diet to cure her son (who is completely typically developing today! No sign he ever had health problems!!)

I became obsessed, and immersed myself every day into figuring this out... I read This Post, http://www.keeperofthehome.org/2010/02/the-gaps-diet-what-it-is-and-why-you-might-consider-doing-it.html and not to sound dramatic, but it changed my life! 

It lead me to many more blogs, articles, and books about "Real Food". We started the diet, and for 13 days Philippe didn't have a single seizure! (His average was 1-3 per week, so zero in 13 days was excellent!)... Until we "cheated" on Christmas, and Philippe had a seizure when he woke up the next morning. But I wasn't defeated yet. We resumed the diet, and again no seizures... Until we "cheated" again on New Years Eve, and again the next morning Philippe had a seizure when he woke up. From Jan 1-12 we were in Orlando on a special vacation so Philippe could meet Mickey Mouse, his favorite thing in the whole world! We didn't do the diet on vacation, and Philippe had 3 seizures in 12 days. We resumed the diet the day we got home, and Philippe had no seizures for 3 weeks, until we again "cheated" one day, and again he had a seizure the next morning... Are you sensing a pattern here?? Maybe every single time it was a 'coincidence'... Or maybe there's actually something to it?

"INSANITY is doing the same thing over and over again, but expecting a different outcome"

So over the past 7 months I've been trying to figure out the diet, and change our lifestyle to a more healthy toxin-free way of living. It has NOT been easy. I haven't done everything right because I either didn't fully know or understand the diet and lifestyle, or because I was having a frustrated/stressful moment of defeat where it was easier to opt for a less-healthy yet more convenient option at the time. 

I finally feel like I know what and how to do the GAPS protocol! I know how to make bone broth and meat stock, homemade yogurt, fermented veggies, and so on. So starting July 1 I decided to start over from stage 1 (only whole organic chicken and homemade broth all day every day), and boy the changes in Philippe have been dramatic and FANTASTIC!!! And we are not the only ones noticing!

We were just at a checkup for Philippe today and it could not have gone any better! Our pediatrician has been seeing Philippe for just under 2 years now. He's fully aware of his situation and his progress, or what used to be a lack there of. I am not joking or exaggerating when I say it was the norm for us to go see him at least weekly! But the past few months oh how that has changed! 

We hadn't been for a few months (I think since April maybe?) until today. During the exam our doctor said "Hey his skin is completely clear! He doesn't have eczema. That's amazing!" I told him he doesn't have diarrhea anymore, and he said "That's awesome!" I also told him "And he can eat eggs just fine now too, he's not allergic at all anymore" to which he replied "Are you serious?!! That's amazing!! Remind me the name of what you're doing again?!" I told him it's the GAPS diet. I also told him Philippe can say 1 word now: "yeah"! He said "I just realized he hasn't thrown a single tantrum the whole time you've been here. He even let me examine him and didn't scream, cry, freak out, or try to bite at all. He didn't love it, but he tolerated it. He totally let me look in his ears and eyes. This is SO amazing. He's not even on any medication now. I can't believe it." But my favorite comment was at the very end he said "Candice, I really can't even believe this. I've seen a LOT of kids, and any other kid it literally takes 10 years to see this kind of progress. I am Floored! And beyond impressed! Just keep doing what you're doing. And let me know if there is anything I can do to help."

As a bonus here is a small video from therapy today. Today was the very FIRST day Joe set the egg or the bus on the table and asked him to give them to him. Philippe totally figured it out right away!! AND he also figured out the difference between the egg and the bus, and which one to hand to him! If you don't know Philippe very well I cannot begin to explain to you in words how AMAZING and COMPLETELY FANTASTIC this is!!!!! It is a miracle! 

I LOVE my son SO much! I'm so grateful to be him mom! I also can't even begin to express my gratitude to Rachel for introducing me to our new life-changing diet and real pathway to health and healing! It is the BEST feeling in the world to watch Philippe change and learn right before my eyes! Our future is now looking so bright, filled with promise and hope.

My Favorite Deputy

Why is Woody on the bathroom floor? More importantly, why do we care??

 

When toddlers move about from room to room carrying their favorite toys or blankie in hand, many parents wouldn't think much of it. They probably wouldn't recognize this as an accomplishment or even realize it's a milestone. But we're not like many parents. We notice every little thing our amazing little guy does because his skills and milestones come much slower than that of typically developing children. 

Today, for the first time EVER in his 4 years of life, Philippe came walking in our room with a toy in his hand!!! His Woody doll to be specific. I was so shocked and excited I froze in place, speechless, and almost cried! This was so great for 2 reasons: 1, Philippe almost never even looks at toys that don't have lights, buttons, and sounds, and 2, usually he sits with a toy and hits the same button over and over again until he simply gets up and walks away, but he has never grabbed a toy and walked around with it in his hand before! 

Progress is being made! He's learning and growing and I'm so happy and blessed to have a front row seat to it every day. He's the BEST!

A horrible nightmare!

This january we got to go to Orlando with the family. If you would like to read about it, click here.

However this is not about the fun part of the trip but about something I wish to no parent EVER. We got there a day before around 2pm, took care of the rental car and drove to the resort to rest because we had been up since 3am! We were so tired, and if you have kids, and you've been on a plane with them on a 3 1/2 hr flight, you know what that's like. 

Anyways, we got our room, and we set the the hide-a-bed for Philippe and put Belle on the crib to sleep for the night. However Philippe would not go to sleep, he was awake and playing, watching TV, and wanting to eat more and more. Finally, he took a few naps, and around 2am he woke up again, I (Marcel) took him on a drive and went to Walmart to buy breakfast for the next morning. THen we came back and entertained him a little longer. Finally I put him to bed again around 5 am. I went to bed and at 8 am I finally woke up. Everything was quiet, Candice was sleeping and so was Belle. I got out of bed and went to check on Philippe, but when I did, HE WASN'T THERE! I ran around the room looking under tables, inside closets, behind counters, everywhere and MY SON WAS NOT IN THE ROOM! I ran into the bedroom and yelled PHILIPPE IS NOT HERE! PHILIPPE IS GONE!!! Candice jumped out of bed and did the same thing I did while calling his name. Philippe is so curious and observative and likes to play with switches and buttons, well, he figured out how to unlock the door and remove the safety lock too, turned the door handle and walked out to explore.  I ran outside looked both ways and... nothing! I ran upstairs and downstairs and around the parking lot screaming his name but he was nowhere to be seen. I was so close to break down but the thought of my son being lost didn't let me and I simply kept running, I heard water and remembered that behind our building there was a lake with a fountain, Philippe LOVES water and for a second I saw in my head his little body floating on the lake, I ran to the lake but he wasn't there either. I ran back to the room and we had LOCKED OURSELVES OUT with Belle still being inside the room by herself, at least she was in her crib, but our phones were inside too! I ran and stopped a man that was walking to his car and said "Please help us, my son is missing, he can't talk, he has autism and epilepsy, and we just locked ourselves out of our room with our baby girl inside" The gentleman stayed with Candice while they called someone to open the room and see what else they could do, but I couldn't stay still, it was as if I had drank 10 Redbulls, my hands were shaking as was my voice. So I ran to the visitors center as fast as I could, I ran inside to the front desk where there was a line of people waiting and just went straight to the counter and told whoever was there "My son is missing, he is lost, he walked out of the room this  early morning, I explained everything trying to catch my breath and sound coherent, but I couldn't, they tried to calm me down and a security guard called on his radio. Within seconds, he got a call back and he told me that they had Philippe and that he was fine. They asked me to go to my room and that they would take him there. I thanked them, and I tried to walk back but I was running without even noticing. After 10 minutes, the security vehicle pulled up with Philippe in the back seat covered in a blanket. I tried to hug him, but they didn't let me, they said they had to verify my ID first so I ran back in got my wallet and my phone and showed them pictures and they gave him back to us. He had gotten a messy diaper and his pijamas were dirty that's why they changed his diaper and had him wrapped in a blanket. We thanked them, and as soon as the door closed i dropped to my knees and held him tighter than ever, bawling. I couldn't stop sying to him, I'm sorry Philippe, I'm sorry! I'm sorry buddy, I should've been watching you and checking on you, I'm sorry!, Candice was crying too. Philippe was just happy to be with us and eager to eat some breakfast. While we were waiting, the security guard told Candice that a guest had found him in the fourth floor of our building and had called them. Then only words that they could get out of him was "mama" and "dada".  I felt and still do like such a bad parent for choosing to fall asleep instead of being aware. But more than anything else I am grateful, I'm grateful that today I got to tuck my little boy in bed and kiss him goodnight. So many thoughts crossed our mind while he was missing, and I simply don't know... I just don't even want to think about it if we didn't have him with us and were still looking. 

I love you buddy! and I'm sorry.

Orlando

Since Philippe was a baby he had a love for Mickey Mouse and enjoyed watching Mickey Mouse Clubhouse. We would play it for him and he would smile so big, laugh and giggle. I don't know what it is about it, the colors, the sounds of their voices, or their faces, but there is no other cartoon show that will get his attention as much as Mickey Mouse does. Even now, if he is downstairs playing with his toys or sitting on the couch, or looking out the window and he hears the theme song play, he will come up as fast as he can and run into our room with the biggest smile! Then he will sit on his Mickey Mouse chair that his abuelos (grandma and grandpa) got him and enjoy the show. The funniest thing is that Belle, our baby girl, shares the same love for Mickey. They're both so cute watching it with their jaws dropping as Mickey goes on his adventures.

Anyways, because of this we had been wanting to take him to Orlando so that he would see Mickey and all the magic that you can experience in all of the theme parks, but well... we didn't have enough money and we all know how much that kind of vacation can be. So we heard about Make-A-Wish and all the things they do for kids, I learned that the boy/girl doesn't necesarily need to have a terminal illness but that if he has a disability that he will carry on for life, they will grant their wishes too. So I didn't think about it twice and signed him up. A few weeks later, we got a phone call and we filled some papers, and sent them out. We waited and waited and one day we got some bad news. Unfortunately Philippe didn't qualify because he wasn't able to communicate "his wish". You see, the child has to be able to say it in some way that that's what he would like to do, and well, Philippe doesn't talk and one of his disadvantages or areas where he needs a lot of progress is communication. This was a little sad, but it didn't last long.


Marcel's family decided that it was time to go again and visit Orlando for a fun vacation with all the family and obviously with all the kids. We can't thank them enough for the opportunity they gave us to take Philippe and Belle to see all the parks and spend time with our kids. We loved our vacation so much! Philippe got a kiss from Snow White on the very first day, rode Aladdin's magic carpets, the Pirates of The Caribbean, carrousels, and got to see Mickey Mouse Clubhouse LIVE! He even rode a small roller-coaster, which he wasn't very fond of, but didn't cry at all. Belle couldn't get her eyes off all the characters whenever they showed up for pictures she was amazed and her mouth dropped at the fireworks and the music. I wish she will be able to remember all of these fun times. Her cousin Emilie is in love with her and was so sweet to buy her a t-shirt and some headbands out of her own pocket! Etienne and Eugene, shared their toys with Philippe every day and played with him too.

Once again, we are so thankful for this trip and for the moments we spent with our family, for the illusion and innocence reflected in our little one's face. Thank you abuelos for this unforgettable vacation. We love you!

Belle and Marcel in the Dr. Seuss Carrousel

Harry Potter World

We got turned into minions! SO FLUFFY!!!

Phineas and Ferb

Philippe being a ladies man... and a little shy too

My dad being silly, he loves hats!

Chip and Dale

Emilie and Marcel being silly.

Orlando LDS Temple, where we got married.

Animal Kingdom

Handy Manny

Belle sporting her spring wear in the nice Orlando weather.

Look at that happy boy!

Philippe, Eugene, and Belle, watching Mickey Mouse Clubhouse at the Resort

Belle decided she is going to be a princess for life.

All I Want For Christmas

We are on vacation in Holland

Several people have been asking for an update for a while now. The reason why there hasn't been one is because basically nothing has changed. We had a phone conference with Dr. Lacchwani on October 10th; Philippe's best option is surgery to remove the malformation, which is over 1/3 of his brain. 

Beyond the obvious hurdle- that brain surgery is a VERY scary thing for any parent to think about, another down-side is that they would have to cut into the motor strip in Philippe's brain, which would make the left side of his body noticeably weaker for the rest of his life: he will most likely not have fine motor function in his hand, and walk with a limp. Despite all that, it's his best shot at life: to learn and understand things, to communicate, to do all the things life has to offer. Most likely, we will do the brain surgery, but right now we just can't make that choice... yet, anyway. 

For now, we are going to enjoy the holidays and pretend like everything is fine. At the end of the year, we'll make our decision. 

Recently a friend gave me a famous piece of literature that I'd like to share:

"Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley  1987"

Maybe, someday, we'll make it to Italy. We've even been offered a ticket that might get us there: brain surgery. But right now, we are on vacation. So here we sit, enjoying Holland.

Fork In The Road

I was taking a much-needed nap. We've had a cold for a few days so we're all cooped up feeling icky and tired. I woke up to my phone buzzing and answered it immediately when I noticed it was from Cleveland. It was Dr. Lachhwani. He hadn't talked to us since we've been home from the hospital and wanted to follow-up and see how Philippe and we are doing. As I told him the medicine has helped slightly (Philippe has had 1 seizure each week, instead of 2 or 3), he looked over the results from all the tests together to get an idea of the "big picture". 

He told me Philippe has a malformation in his right frontal lobe, which no other doctors had noticed in his previous MRI's. He said it's easy for some doctors to miss if they don't look at MRI's everyday or don't know what exactly to look for, but to him it was obvious. So here's where it gets tricky... Philippe will not out-grow seizures; he will continue to have them the rest of his life. We've tried all the "biggest guns" to fight his seizures: the Ketogetnic diet (which works for some patients to *cure* epilepsy, but after 2 years didn't work for Philippe), we've also used Phenobarbital, Keppra, and Topamax, which are some of the most successful anti-seizure medications. Basically, since each of these things haven't completely controlled Philippe's seizures, probably nothing will be able to his whole life. 

Dr. Lacchwani told me the malformation is not just one tiny spot, or even a small area in his brain, but that it's "significant". His best bet for his future is to remove the affected area through surgery. But the affected area also runs along the motor strip, and at this point Philippe's motor skills are "hard-wired"; he is equally strong of both sides of his body. If we do surgery and remove part of the right side of his brain, the left side of his body will be affected, but we're not sure how much. Since his motor skills are developed, his brain will not re-route those functions, so whatever portion of his motor function gets affected would be lost. It's possible he could lose peripheral vision on his left side, lose feeling in parts of his body on the left side, he might not be able to control his hands or use his finger tips for delicate tasks, and if he loses strength in his left leg he might be clumsy or walk with a limp. The up-side to surgery is that by removing the malformation from Philippe's brain it might reduce or eliminate his seizures. It also might help him over-come some of his developmental delays and reach milestones more quickly with less effort. The key is MIGHT. There's no way to know the out-come of surgery without actually doing it. We can keep our sweet, brave, happy little boy exactly the same: giving him medications (that dont really work) and lots of therapy and extra attention. He will most-likely continue learning at his own pace and who knows how far he will go- if he'll ever be able to "catch up" to other kids, if he'll be able to function in school, if he'll be able to talk or even grasp simple concepts. OR we can choose surgery: he might be seizure-free, or he might be worse off than he is now not only mentally but also physically.

This is our fork in the road.

What do you do when you have to choose for someone else? What do you do when every option is just as scary as the other one? How can we possibly make this decision for our baby boy?! But we don't have any other options. Now that we FINALLY have this answer, we HAVE to make a choice. If we do nothing, we're choosing to not do surgery, which is still making a choice that we might look back with regret and think "why didn't we do that", and we will always wonder what if... If we do choose surgery, part of his brain will be taken and we won't have a way to put it back. If something goes wrong, we won't be able to un-do it. Then of course, there's always the fear of him going into surgery and sometime throughout it have the Dr. come out and tell us that our little boy didn't make it. I know you shouldn't think that, but you just can't help but think the worst.

Right now we're waiting for our doctor to meet with the rest of the board of doctors where they will talk about Philippe and discuss what they think we should do. Then he will talk to us again and we'll go from there. Until then, we're crying, praying, and searching for answers. Answers about what to do, and how to find the courage and strength to actually do it. We go to work, we do our chores, and run our errands but there is not one moment that we stop thinking about this. If you see us and we look lost in space, that might be why. It is like we've hit that wall, fell back, got up and wonder how we can get through. 

Jason Mraz

"I Won't Give Up"

Hmmmm ... Hmmmm ... Hmmmm ... Hmmm ...

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

And when you're needing your space
To do some navigating
I'll be here patiently waiting
To see what you find

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up
Still looking up.

I won't give up on us! (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up