Week 3 - A skeptic turns hopeful?

There is so much to say! I have to share this!!!

IT'S WORKING!!!!!!

(I think.)

Ok, so when we first started this whole thing we really didn't know what to expect. Shaun and I had gone to hear a speaker on the topic of this Brain Balance Center. When we left, we knew we wanted to do it. We heard about some of the details families deal with, that we deal with, and that this center has helped. And we wanted in on it. Because we wanted help.

As Anthony's parents, and Bella's and Emma's, we want the best for our kids. In most ways, we can expect Bella and Emma to participate in that process more than we can with Anthony. In the simplest of ways, if Emma wants to play soccer or Bella wants to go to a friend's house, they can ask us. If they want to be a vet or an artist when they grow up, they can tell us and we can help navigate them towards their dreams. But with Anthony, we have to both think of a possible future - that maybe doesn't even exist yet because of how fast the world changes - AND we try to find ways to get him there. We arrange play dates for him, we sign him up for things and we shoot for his full potential. And for his entire life, we have had people, lots of people, telling us what his future should be, should look like, and how to reach his potential. If anything - we have TOO many options, and opinions, in what we "should" be doing. (Which leads to the majority of my "mommy guilt", because there is ALWAYS more we "should be working on" for him. And it carries with it this underlying message that if we don't - him not reaching his potential is because of us not doing enough.)

Through that mission of finding "the best" for him, we have gone to Arizona for speech and oral motor skills. We have gone to Ohio for more speech. We dragged him to Missouri for a camp where he gets to be accepted for just being who is. All those and the many little things along the way have been great and we wouldn't change that we did them. But we always kind of wished we could have gained more out of those things. Well, maybe not camp - that WAS the best thing we ever did. For all of us.

And then - we started at Brain Balance. Even though we were excited, even though it all sounded so good, and even though EVERYTHING fell perfectly in to place for this to come together, Shaun and I BOTH still thought - Is this really going to do anything???

Do you have any idea how many promises of "if you do this, your kid will have the best chance at a good future" there are out there?

And how much they cost?

And how much SOO many parents like us do it, just in case it might actually deliver on those promises? Add in the fact that they all sound so legit, professional and even scientifically based beyond my knowledge or ability to separate the real thing from a scam? I gotta tell ya, after a while, they all start sounding a little shady. Even our latest "adventure". Just how do they figure out what hemisphere is less developed as the other side anyway? How do they attribute certain characteristics to one side or the other? And what the heck is up with that music?? We have to do SO much! And it is so expensive! Is it really worth all this?

Well, I have a slightly reserved YES!

Anthony was assessed with a Left hemisphere deficiency. So we have a CD he has to listen to, only in the left ear, 3-5 times a day. It has certain tones designed to enhance something in his brain while he listens to it. He has exercises he has to do, 2-3 times a day that include eye strengthening exercises, primitive reflexes, and core strength. It is REALLY hard to get them all in. Most days, it's just once through. Some days, I have gotten in 2. And this past week he's been sick, so we have even missed a few days. (Insert major mommy guilt here.) We drive 45 minutes one way to Woodbury 3 times a week for the stuff they do there. We are trying to keep up. With all of it, and life too. Like little sister Emma's birthday and doing her party, scavenger hunt, and birthday week surprises along the way. Or Bella's band concert and dad working all the time. We are trying.

And after only 3 weeks, this crazy chaos is paying off!!!!

My eyes just fill with tears as I think about how our little boy is changing.

Here's just a few:

Emma mentioned she needed a spoon one day, not asking for one, just mentioned it. Anthony got up and got one for her without being asked.

Every time someone sneezes he says "Bless you". Every time someone coughs, he asks if they are ok.

While at the grocery store, he always finds the car rack and just sits there forever! I usually try to make my turns in the aisles to avoid it, until they relocate it. Then I usually have to let him stop and look at it, because he won't go any further, put Bella on "Anthony detail", while I go get the rest of the groceries. Same thing if he finds the toys at Target. The last 4 trips to these two places. He stops briefly, and then moves on when we tell him to!!! The fact that he walk away in under one minute is a miracle!!!!!

Last night my parents were over for cake and ice cream for Emma's birthday. ANY other visit he usually wanders up to his room to play alone. Yesterday he stayed and visited with us for the ENTIRE night. My parents both thought it was so different to have him hanging out with us and conversing with us adults. My dad said he was like one of us grown ups.

He has been SOOOO much more cooperative, attentive, caring, affectionate, and TALKING! He's still hard to understand, but he is so much more communicative and conversational! More than he ever has been in his life!!!! He stayed home yesterday from school because we were in the ER the night before (a weird rash on his arms and chest- it went away, and he's fine.) Anyhow, we went to Target together. It was so fun, I truly enjoyed the company. He showed me stuff he wanted for Christmas, and then PUT IT BACK and walked away. He even picked out a present for Emma!!!! So thoughtful of him!! Him thinking of others the way he has been is new too. The extent of it is new.

I still cry at how much more engaged he is with all of us. This entire day he has been interacting with us. THE ENTIRE DAY. He didn't go off to his room one time to play alone!!!!! He has NEVER done this!!!! We played games, he cooked with dad, he was a part of everything. We were ... a family today. Like we have never been. NO arguing, NO fighting, NO not listening and when Emma wanted to sit in the chair he was saving for dad at the table - he got up and moved to the other side, so she could sit where she wanted and he could still sit by dad!!!! That one made me cry a little. EVERY other time, he would throw such a fit that Emma would have to move for safety, and for him to calm down to even eat.

Today was the most beautiful day I have ever have. Watching him grow this way, be so interactive and social. My mind is spinning. I know he will have more difficult times, we still have 9 weeks left for crying out loud! But this day was incredible. And I will treasure it.

I find that I am still trying not to get my hopes up though, just in case. I am even still thinking it's other things. Like maybe he's being so nice today because dad is home. I just don't know yet.

Is it really working?

Is it dad?

Is it a weekend?

Is it the crazy weather?

What's causing all these changes?

Do I care?

I am loving this side of my boy!!

We will keep doing our exercises. And we will keep praying. I am an utter zombie most days, but I am a mom getting to know her son in a way I have never known him. Shaun and I just kept looking at each other all day, shaking our heads, mouths dropping and eyes popping and saying "Did you see that?????"

Today ... I have HOPE!!!!

But tomorrow we have a family gathering. Lots of people.

And yes, I'll be watching.

And yes, this is a test.

I know what they've been like, so I am more than curious to see how it will go now.

While I was driving to Woodbury today, I went past a church with a sign out front. In the moment before, I was just wondering if the Brain Balance Center was what was happening to my son. And then I saw the sign, it said "Better than Balance".

I took that as a sign to me, that something much bigger (and better) than all of us - is what's going on here.

And I am more than grateful for the incredible gifts of what ever is happening to my little boy.

Today and every day.

Roller Coaster - Week One

What was I thinking?

I have been asking myself that a lot this week. I've been asking myself a lot of questions this week.

How am I going to do all this?

Did I really look into this good enough?

Maybe I should hire some help?

Am I qualified for this?

How bad did I screw up my kids?

Did it really NEVER occur to me that with all the added attention to Anthony, the girls wouldn't find a way to act up for some attention of their own?

There is a fine line between laughing at your situation, and finding yourself crying in the closet.

And there is a VERY fine line between educating yourself - and self-torture.

It's been a roller coaster ride this week.

But it has been wonderful!!

I have learned SO MUCH about Brain development! I have been truly captivated and absorbed, slightly obsessed and enthralled with this stuff. Maybe one day I'll be a therapist or, a dream of mine - a Child development researcher. Who knows? I always have said - by the time my kids are grown, I'll have a Ph.D. in something. You know how people are completely sucked into Harry Potter, or Twilight - Well THAT is me - except about the brain. The emotional, physical, and cognitive growth of it, has me fascinated. I was given a book to read "Reconnected Kids" that has me spinning. I am learning so much! The pieces of the puzzle are making sense and creating a picture!!! My favorite was when I was reading about how to more effectively motivate a child with a Left hemisphere deficiency. (Which is what Anthony has been assessed with). And although we didn't know it until now - we had been doing this ALL along without understanding why it worked better for him to use the techniques we had been. NOW it makes perfect sense. There have been SO many "a-ha" moments since I picked up this book and we have started this program. It's created more hope than I could have imagined.

It has also "educated" me on some environmental factors that can play a part in what we are dealing with with Anthony. This is where I have to be very careful. I find myself going beyond just "beating myself up" over what I did or didn't do when I didn't know what I was doing. What I wished I knew, "back then". It's hard to not do that, especially since I am a pro. But I am trying. It's both hard, and GOOD, to look at the truths about yourself. There are quite a few reasons I don't look in the mirror too often. Like most I am sure. But I am. I am taking a hard look at all of it. I am happy with most, but there are some big things needing some adjustments. I pray this process, as well as the in-home program we are doing helps me with those things.

Did I tell you this isn't the only thing we are doing for him right now? We started a different program as well about a month or so ago. A behavioral approach we came into to help us with the aggression and transition issues with Anthony, but it also helps with the girls. It's more of a Parent program than anything else. But it is wonderful!!!!!! It's helping me be the mom I most want to be, scratch that, the PERSON I most want to be. As I am reading in this book, speaking with the therapists, and planning with the "SuperNanny" as I call her, I realize something very profound - there is no coincidence that they are intertwining like they are. I am getting a consistent message loud and clear from this busy little combination. Shaun and I are making changes and breaking cycles.

And that's why it is so incredibly hard.

But there is good stuff in the hard stuff. And I am not yet where I want to be - but I am on my way.

And along the way - I will probably cry some more, but I will laugh too.

And last week, I laughed:

-While Anthony did some of the facial therapy techniques on me.

-When I got him to squeeze the ball 22 times, (when he only wanted to do 1 but is needing to do 25) because for every squeeze he did - I did a jumping jack - which totally cracked him up.

-When my car wouldn't start at the school, and after running through 20 different back up plans in 30 seconds of how to get to therapy on time and Bella ran back in to get help - it started.

- When on the way to therapy my speedometer was stuck at zero, so I just tried to "keep up". While contemplating the speeding ticket I was sure I was going to get - I wondered how to convince the police officer to drive my son to therapy with the "lights on" so he wouldn't be late.

- When the extra money we put in the savings on Monday only lasted until Friday because we had to fix the car.

- That I won't be the first one to turn on the juicer before remembering to put the pitcher under the spout and spray the kitchen with blueberries.

-When we sat down with the girls to explain all the changes around the house and the therapies, less screen time, nutritional changes, running to Woodbury all the time, child care stuff and the like and why we were doing this for Anthony... Emma did what every non-filtered kid gets to do her age. Ask a question we all want to know, but are too afraid to ask: "Will all this make him normal?"

Oh sweetie! I love you!

I just told her it will not take away Down syndrome, but it will make him the closest to normal God meant for him to be.

Keep praying if you are - we need it.

Here we go....

Wow.

Pretty much the best word for what we are about to embark on. We had our first therapy appointment yesterday. It's in Woodbury, so the poor little guy fell asleep on the way there. Kills me how he does it. He was sitting up straight and slowly crept forward until he was completely bent over at the hip, head hanging down, and asleep. Out cold. How does he do that?? Anyway, he popped up when the GPS lady says "Arrival on right."

He didn't really want to go in and brought some trucks with to "drive" on the way. (He holds them at the window and watches them "drive" on the road). Anyway, they proved to be more of a distraction than I had bargained on and he wasn't too thrilled to be going in. Eventually the very nice lady had him "park" the truck in a "garage" (on a board under the monkey bars). I love how these people don't question a thing. I found myself trying to explain that they are something that helps his security when he's nervous. (Did you know that on his first trip to Camp Barnabas he took a yellow car? And that it is in EVERY single picture that was taken of him during that whole week?) Anyway, they just smiled and were like, "yeah, that's just fine." I thought maybe I better not bring them next time (my goal was to keep him awake while he "drove" there. Yes, I brought the trucks, not him.) But they were just fine with it. I guess I forgot where I was and that these people see this every day.

He did great and worked very hard they said. He always does.

But he has no interest in going back.

Ugh. Sorry buddy.

We go every Tuesday and Thursday after school and on Saturday mornings.

For the next 3 months.

And then there's the home program.

Wow, doesn't cut it. More like YIKES!

We have certain exercises to do with him anywhere from 3- 7 times a day, some on certain days, some everyday. Music to listen to, except only in the left ear. Or is it the right? Every day, 3-5 times a day. Limited Screen Time. And in 2 weeks he will have a nutritional adjustment. If I was a bettin' woman, I'd say we are going to have to go Gluten and Dairy free first right off the bat. Right now though, we already have to have NO junk food or fast food during this time and no artificial colors, and decrease his sugar by 90%. A whole bunch of others I can share along the way. But for now....YIKES.

Oh yeah, and we have to journal and record everything. What we do, when we do it, how long we do it, and how he handles it all.

I felt very overwhelmed yesterday.

But then I thought about it.

I have a leg up with Shaun in this house. His knowledge and cooking skills will make this sooo much easier.

I am going to get a ton of interaction with my little guy.

Our whole family - in support of him- will be on these dietary changes and doing these exercises right along with him. And he won't feel left out.

We could all be a lot healthier. Tired. But healthier.

And the one that got me the most.

It's 12 weeks.

12 weeks that could ultimately change the next 30 years.

Our "Before"

When you look at this picture you probably see a boy who loves to swim, is happy, and cooling off a summer's day with a great time in the pool. You would be right, but there's more to this picture than you would ever guess.

This picture took 12 years to get.

Shaun and I have endured many scratches and the pulling of our hair and skin to get this shot.

No, I am not that crazy of a scrapbooking mom.

But I am a mom who knows that I, more often than I would like to, have to literally pull Anthony through an experience I know he would love once there. But is far too afraid to try.

It wasn't always this way.

THIS is a boy LOVING the water!

For many, many years we couldn't get him into a pool, the lake, or even on a boat. Shaun and I even had code words and game plans for the mere attempt of getting him back into these situations. That used to be the very things he loved. Maybe because he outgrew the bucket, maybe because he watched Nemo one too many times,

or maybe it was the way his brain grew.

Starting next week, we are beginning a 12 week journey that could change everything.

About a year ago we came across information about the Brain Balance Center. I am not sure who gave it to me or if I discovered it on my own. I don't do as much research as I used to, but I never really turn off the "what could help him reach his potential" switch that moms like me have.

Selfishly as well, I saw this as a way to help our whole family.

We went to a speaker that talked about all the things that children operating with one side of the brain stronger than the other have to deal with. And we saw a detailed picture of our son. When we left the event, we left feeling like some of our "issues" could be changed. We didn't have to accept some of what we were dealing with. The things that became our "normal". And most of it had nothing to do with him having Down syndrome. We left with hope.

It was never a matter of "if" we were going to do it, just when and, good gracious - HOW? It's not considered "medical", so insurance wasn't going to pick up the tab. And therapy isn't cheap!

Through a series of events that could only be God parting the Red Sea for us, we are starting this adventure NEXT WEEK!

I decided to share our story here.

One - I'm sure what I have to say will not fit in a Facebook status.

Two - I can update a lot of people at once

and three - most importantly - I don't want to forget where we are right now. I want to see the results. Less chance of selective memory here.

I don't want to forget what our "normal" is, because I want it to change. There is a guarantee of some kind of change - but no guaranteed measure of how successful.

The therapy consists of sensory and cognitive therapy. These are designed to strengthen the "weaker" side of his brain. To "even out" the sensory input and help him to process things better.

So... maybe...

-we won't have to avoid movie theaters

- or stop and wait all the time for the tongues in his shoes to be "just right"

- or "fix" the numbers on his Vikings jersey to be perfectly placed on his shoulders (and then have to change the shirt anyway)

- we don't have to wait until he is finished to move on to the next thing. (Although we did just get through a little and can now use a bookmark at times).

- we could all just get in the car, and not have to rearrange where people are sitting so that he will buckle up and move on

-we could have less meltdowns over whose turn it is, what's for dinner, who gets to play with whose toys, the sharpness of a pencil, what movie we watch, what park we go to, and so many others that happen so randomly and out of the blue that we are often left so lost as what to do

I've felt like the worst kind of mom in the way that we do more to avoid him falling apart than teaching him how to process events. But I feel some hope that maybe because of this growth problem, it may not have mattered what I did. He simply can not process things the same as the rest of us.

I have already learned some basic understanding of this concept and SO much can be explained by it. My favorite was when, after all the evaluation results were complete, this doctor explained SOOO much of Anthony from just reading the results - and he had never even met Anthony. It was such an amazing moment to have this guy describe what we "probably" deal with due to the results - and have him hit the nail on the head in so many ways. He's seen it THAT much. And he's seen improvement in all those areas.

Knowledge really is power! And since even that day, I have been given a blessing of patience when we come into things that don't feel so "random" anymore. Like the one day recently when I took the kids to Ikea and Anthony caught a glimpse of himself in a mirror. And that his hair was sticking up a little bit. Unfortunately, because he had his coat on, every time he tried to flatten it down with his hand, he created such static electricity that it just kept getting worse. The girls, (who ALWAYS astound me with their own patience and understanding with their brother) and I just waited for him to take care of it. But as it got worse, he got more and more aggravated and was heading for a shutdown. So, as 20-30 people continued to pass us by, I pulled a 1950's mom move, licked my hand and stuck down that hair. I grossed out both myself and Bella with that one (and now, maybe you), but it worked. And 20 minutes after that first glance in the mirror, we moved on. Made it about 5 feet and then he wanted me to go home and get him a different car to carry.

Have I mentioned that, along with avoidance, I have a master's degree in distraction?

In three months, some of this could look very different.

Or... it could even look the same.

But we would have tried.

And that's just what we do.