Breathing Again

Hello....

Is anyone still there?

It's been over a year since I have written. It very much surprises me how much time has gone by, and it saddens me too. So much has happened over this past year. Big things, little things, all things. And no where do I have any kind of record of it. Well, I have over a thousand pictures I guess. Still on my phone or computer, of course. But as much as "a picture is worth a thousand words", there is nothing quite like a story.

So, I come back. To write again. The stories, the thoughts, the whatever. I need to.

Recently I read a pretty fun and terrific book.

Glennon Doyle Melton is my newest hero. Her blog Momastery is a happy place I can go to. For whatever reason, I guess I needed someone to give me permission to be me. Imperfect me. And she gave me her blessing. And I love her. And I loved her book! The whole thing is lovely. But the one line that pierced my heart was her comparing reading and writing to breathing.

She said that for her, reading was the inhale and writing was the exhale. (I just loaned out the book to a friend, so I am paraphrasing her here.)

Those words could not have better described me. It made me feel a huge breath of relief come from deep within when I read that. She knew me. And at the same time it took my breath away.

It was an "a-ha" moment. THAT'S what has been missing!

It's been a long year. It's been many long years. And then this one line comes into my life, and gives me hope. All the "stuff" stuffed down, it needs to come out. I need to breathe again. I need to exhale. I need to, because without writing, without getting it out... I have been gasping. Suffocating. Drowning at times.

There have moments I have been so lost. So today I am re-finding. I am being a story teller again. That's what I do. I tell stories. To share. To treasure. To remember. Maybe to make people laugh. Maybe to touch people's hearts.

Even if for no one else, I will do it because I have missed it. I have missed being able to just breathe.

Hello again.

D

I Quit!!

I have made many life-altering decisions in my adult life. College choice, career choice, marriage choice, the choice to have children (well, that last one was a bit of a surprise), the choice to leave the working world, and the choice to move states (a couple of times). All have had their moments of deliberation, confusion, debate, struggle and have produced complete joy. They have all strengthened me, grown me and prepared me. Prepared me for what I am about to do. I have made a HUGE decision. One that will prove to challenge me even more, one that is intimidating to me, and one that will completely rearrange my life from what it has been for more than 13 years.

Since Anthony was 2 months old, he has been in some form of therapy, once to three times a week, for the past 13 years!! That's right. We had Early Childhood to our home starting at 2 months of age. We had Occupational therapists since, I think, 6 months. Physical therapists since before that. And pushed for Speech therapy before 2. He was signing around then as well, maybe even before.We started clinical therapies before he was one and have never stopped with one of those 3 types of therapies. I put him in gymnastics at 3 years old to help him learn to walk because PT wanted to stop, since he wasn't "progressing". (He was walking in less than that 6 weeks course). I have taken him to Arizona AND Ohio for different speech therapeutic techniques. We have spent more time in waiting rooms waiting than I want to even imagine counting. I have attained more friendships through clinics than school functions. I STILL have some of his therapists on my Christmas Card list. We have done therapies in Central and now Southern Minnesota, North Dakota and Iowa. This last round of therapy was more than intense and may have been the final straw on this camel's back. Because all of this I tell you, not to show what a busy mom I am, but to show you how I have reached this monumental decision. 

I have decided - I QUIT!!!!

In the beginning of his life, I will be honest, I was scared. Not only was he my first child, but he was a kind of child I knew nothing about. As a new mom, I wasn't just getting used to feeding and changing schedules, it was seeing if he could eat on his own and spending the first four months of his life trying to get him to nurse (which he DID and continued for 16 months). It wasn't about getting him on a sleep schedule, it was checking to see why he wasn't waking up. It wasn't about watching his development and milestones just happen, it was about trying to pick which milestone to teach and force him through exercises he didn't like to strengthen him to get there. I was a mom who didn't know what she was doing, and certainly didn't trust herself. So, out of deep love for this precious boy, I searched out everything I could find on how to do this "right". And when you don't trust yourself - EVERYONE can seem more "right" than you on any given thing. From how to teach him how to suck through a straw to how many timed trips to the "potty" to train him. AND when you have searched out everything, you end up with a LOT of people telling you what to do. Making you even less sure of yourself and your abilities. As a recovering people pleaser, I can tell you, this is too much. 

All I have ever wanted for Anthony was to be the best mom I could for him. But I realize now, what very important piece I didn't really give him. That NONE of the professionals with all their goals and objectives ever really explained to me. 

Anthony needs a mom. A parent who doesn't wear the therapy hat ALL the time. A mom who doesn't buy toys with the ulterior motive of which motor skill it will assist. A mom who doesn't STILL "categorize" his toys by shape or color. A mom who wasn't on the phone with therapists or insurance companies as much as she was. A mom who doesn't have the IEP constantly running through her head as another "check list" to check.

A mom who can trust her own instincts.

So I quit therapies. All of them. Everything. 

Am I letting the pendulum swing too far to the other side? Maybe.

Am I just too worn out right now to be this definitive? Probably.

Have I "given up" on my son? NEVER!! 

I have a son who needs me in a very important way and I feel incredibly blessed to have had this revelation. I feel like I need to take this opportunity! Is it too late to be the mom he has always deserved? I hope not.

I assume the above line will unintentionally solicit some "you're a good mom" comments. But I need to be clear on this - I don't think I am a bad mom. It's just that, with Anthony especially, there is always more that I could be or should be doing to "help him reach his potential". At any given time I can rattle off 4-5 people whose expectations for me have not been met in what I do with him. And that carries a lot of feeling like I am never doing enough, essentially, because I am not doing it all. 

I am getting over that.

So now what, you may ask, is my plan?

To (FINALLY) truly let him be a kid, and me be a mom. Sort of. My focus has changed drastically from thinking of him as a child, to thinking of him as an adult. I need to help him be more independent and teach him life skills. Now that we aren't rushing off and late to somewhere, I can take the time to teach him more.  It's not about his milestones as much, although I still LOVE reaching them, it's about his adult life and a new set of "milestones" I guess. 

Honestly, I think I have more work cut out for me with this decision than I had first thought. I am beginning to see how much I have let him become too dependent on me. And although I felt it was because I loved him and thought I was just helping, I think I have inadvertently taken away the exact struggles he may have needed to grow through. So it will be a little tough at first, but like every other thing he has learned to do on his own - it will be worth it! So I will prepare for the battle of sitting on my hands and biting my tongue, so that he can win the war of independence for himself. 

I feel a sense of freedom in this, a relax in the pressure. I am learning to trust myself and my decisions. I am looking out for what really matters to his future, and letting go of the past. The good news, if I ever feel the need to put "therapy" back in, I have a library in my home that will point me in any direction I need. And I can open or shut the book at my own discretion. 

If you will allow me to pass on my two cents in the raising of children that I have learned in this - 

-Set them up if you have to, but let them fail! So they can learn to recover, cope and problem solve!

-Doing things for them, even out of love for them with the best of intentions, will only teach them they can't do it themselves.

-For every person who says you should be doing things a certain way, there is another saying it's wrong. And in five years they'll say something different anyway-So learn to decide for yourself. 

-Let your kids make choices on the little things (like outfits, how to make their bed and clean their room), so that they feel confident later on the big things (friends, underage drinking, and boyfriends and girlfriends).

-Do the things THEY like to do, not just having them join you in your activities.

-Speak life-giving words into them!! What they CAN do! And the positive things you see in them. 

- Take care of yourself - to model it to them - and to give yourself the time to think and process - so you can make decisions and learn to listen to yourself. 

I wouldn't trade out a single therapy we did and I don't regret searching and doing everything we could, and did, do for him. He wouldn't be who he is if we hadn't. I just wish, if I could go back, that I would have had the belief in myself to have added my own mothering instinct into the mix of it all so much more. It's been there all along. I didn't need to spend as much time as I have wondering if I was doing it "right", because I would have known more about what was right for us.

Well, I am now. I have a lot of work to do, preparing him to be a man one day. A man of character. A kind-hearted, patient, hard-working, confident, compassionate, caring, and good man. As his mother, I will always nurture and protect, but more - I will honor him. For who he is, where he is, and who he will become.

The Day Anthony Learned to Fly

We are nearing the end. And I'm not the only one feeling exhausted. Bless this little guy. What a trooper!

Brain Balance is at Week 10!!!! Can you believe we've come this far already? As hard and long as it is - I can't believe we are almost done already!! I have never been so tired and disconnected from my life as these past 3 months, but it has been so worth it. This is partially why I can't for the life of me keep this blog up! 

BUT... Drum roll Please.....

I have a new kid!!!!!!!!

I AM STUNNED!!!!

I will keep you up to date, I promise!

There are a million things to share, I'll break it up over these next posts, but you have GOT to hear this story!!!

The Day Anthony Learned to Fly!

Once upon a time, there was a field trip to Buck Hill. With the staffing concerns, any child with special needs got a note home encouraging parents to accompany their child to the event. I assume to help their child, but putting me on skis would NOT help Anthony very much. Shaun and I thought, and talked, a lot about it and really weren't sure if this was a good idea or not. His balance, his coordination, his fears, his strength, neither of us could figure out how this would even be possible. We were both reluctant, and every time we asked Anthony, he gave us a very strong answer...no. Shaun was doubtful, I was worried, and Anthony was adamant, there was just no way. So I made the decision to cancel.

Then I thought, maybe I'll call Buck Hill first, and explain the situation. Just to see.

That was a good move.

The woman was so great! She talked like skiing with kids like Anthony was "old hat". "No problem", she says, "we do this all the time." I let her know I was to "help", but really didn't know how I could. She said, "sometimes kids do better without their parents help". I was thrilled with her calm attitude, knowledge and experience, especially with kids like Anthony. But I can't tell you how relieved I was to be "off the hook"!! I haven't been on skis since the 8th grade. Seriously, I can't afford to break anything anymore.

The plan was to get him to go through at the end of the line, so that once all the instructors were through giving the other kids their group lessons, an instructor would be available to spend some one on one time with him. And, basically..."see how it goes". I was told an instructor would work with him until lunch, and then he was on his own, with me. Uh, yikes.

The first miracle of the day was while I was watching the buses drive up. As one of the teachers got off, we met eyes, and she gave me a thumbs up. He got on the bus! 

(When he saw me packing his snow pants, he got mad and said, "NO skiing! Just school!" So I had to bring them in in secret.)

When he got in his skis and outside, he took a good look around, saw the chairlift, and said "I go on that". 

I said - "Mmm, we'll see buddy."

I thought - You have got to be kidding, no way, I am NOT taking him on that, we'll both die. 

Here he is with Ken - his awesome instructor.

He did a lot with Anthony. He struggled a bit when he realized how hard it was to understand Anthony and looked to me for "a little assistance here". I told him - he understands you just fine, and he knows people struggle understanding him, keep it to yes and no questions and you'll be fine. And they were. His patience was amazing. He was so caring, and went at Anthony's pace. Which was a big adjustment for him I think. But he got him down a little hill of a couple feet. And Anthony was BEAMING!

They kept at it and soon he had Anthony hanging on to a set of poles, held horizontally like a bar, with him and down they both went on the Bunny Hill.
And ohh, did he laugh!!!

We kept talking him out of that chair lift as he continued down the Bunny hill once more.
I assumed we were done and I was gearing myself up for the meltdown of getting him off those skis and out of the snow. But then, out of nowhere, skis in this English guy. In his awesome accent, Bob, asks Ken if he has ever used this piece of equipment (I can't remember the name). These two are discussing things and then Bob suddenly skis off and grabs this contraption.

Metal things that hook to the front of the skis, that have straps that hook to them, and a bar that hooks right behind his feet to keep the two skis together. And he uses the straps to guide Anthony. Anthony just has to stay up. By the way, did you know they don't teach kids to ski with poles anymore. Wow.
(Through all of this, we find out about the Adaptive Ski Team Buck Hill has. Awesome!!)

And then they ask my permission to take him up the bigger hill next to the Bunny hill. This hill is HUGE to me, I have NO idea what they are going to do or how, but I'm thinking - we've come this far! Sure, go for it. And they did.
THREE TIMES!!
Never has there been a giggle like that!!!

At this point I am thinking, these guys have gone SO FAR AND ABOVE what I had hoped for. Remember, I was psyched he got on the bus!! And now he has gone down that big hill 3 times.
And we are cutting into their lunch time.

So, I begin to prepare Anthony to thank them, say goodbye and get ready to go.

And then these two men look at each other.
You know the look.
The one where there are no words spoken, but a "dare" has just been placed on the table.
Yep, that's the one. They looked at each other, I saw it. And then,
they looked at the chair lift. And then... me.

ARE YOU SERIOUS???

YEP!!

They went 3 times!!!!!
I still get goosebumps, and tears.
My son went skiing!!
As great as it was to be at the bottom of that enormous hill and witness this, Ken told me, it was even more amazing at the top with all of the kids on the hill and above in the chair lift yelling "Go Anthony" and cheering him on. That one got me. Cue tears.

A new world has just opened up to us!!
One I had never even considered!
Look - he is soaring!!
Heart and body alike.

I don't want to be the mom who doesn't let him try things because of his disability.
And I hate to admit that I almost was. But I will never forget what this day taught me...
Start every opportunity with -
"Why not?"

And then take the leap.
Because you never, ever know,
unless you try.
You just might get a miracle before your eyes.

Roses are Red, and Roses are Blue

Life is crazy! For everybody, I know. But that is my reason for not being up to date on this blog. I think we are on week 6 now.

That family gathering we went to... He walked in, and the first thing he did was go downstairs, alone. Away from everyone. To play with the cars he remembered were down there. Shaun and I were a little disappointed, not surprised, but bummed a little. We had such hope for the day.

Shaun gave me a great, reassuring smile, and said, "We'll always have yesterday." (I LOVE him!) I let go of my hope and went on like usual. Except it wasn't "like usual" after all. Yes, Anthony wanted to play with the cars, but he also wanted to play with the kids and talk with the grown ups. It was amazing to watch!! He played Pictionary, the Wii, cars and at one point was sitting on the couch with a little 3 year old sitting on his feet, bouncing the little one up and down. I noticed all the little kids gravitating to him more than they ever have. And he was talking more with everyone!!!! It was so very memorable! I will treasure that day. That whole weekend.

But it sure made these last 2 weeks all that more tough. As the program explains (or warns), it will get worse before it gets better. Well, we hit "worse". He's arguing, yelling, name-calling and not listening so much. He gets so frustrated so easily. Angered quick too.

Today, he was crying (which he NEVER does) because his hair wasn't "just right". Although, it was probably more upsetting to him that I couldn't understand what he wanted exactly. Or that he couldn't understand that EVERY SINGLE hair can't lay down, more than crying about his hair.

He is fighting me huge on the home exercises. (TONS of mommy guilt here. But using bribery to cure that.) He even refused to go into therapy one day and it was a fight to get him in. (I didn't want him to think if he threw a big enough fit, that we would leave, thus setting a new routine I am not keeping.) Once inside the room, he was pretty physical with me. I left him with the therapist and walked out the door... crying.

A few days prior to this event, we got his food sensitivities and metabolic tests back. They have him do a blood and urine test to determine if there are any digestion issues getting in the way of his learning and contributing to his behavior issues. We go on an elimination diet for 90 days to allow the gut to be healed, and the brain to have its optimum level of functioning. So now we are on a "food- free" diet. Just kidding. We are basically on a "if it came out of the ground, or off a bone, you can eat it" diet. No gluten, dairy, egg, soy, sunflower, casein, and 20 other foods. Not much left. Earlier that day, I was so disheartened to spend 2 hours at the store (time I really don't have right now) reading labels to find that we really have a stunning amount of limitations in his diet. Did you know that every chip and cracker out there is made in canola AND/OR sunflower oil? What the heck? "And/or"? Just pick one already! I purchased only one item that day. So my tears were already closer than I wanted them.

But his tantrum just hurt. It hurt, because he's 100 pounds and very strong. It hurt, because he's still my baby. It hurt, because I was mortified that people witnessed it. It hurt, because he is still so freakin locked inside. I hate watching him go through this. And selfishly, I hate dealing with it sometimes. And it hurts, so very deeply, to have been able to see those amazing dreams come true and answered prayers revealed, to feel like somehow it is gone. That we got those incredible moments, but that they were fleeting. And I am terrified they may not return. As I sit here, spilling over in tears as I spill out my guts, here's the reality folks! Sometimes - this just isn't what I think I can do.

I try very hard to always be positive, patient and encouraging. Most of the time, I think I am. In fact, on this blog even, I think I have always shown that side. I have been accused many times of wearing "Rose-Colored Glasses" throughout my life. I believe I have a pair. Ninety percent of the time the rose color IS red. Love, joy, treasured moments, laughter, snuggles, comfort, peace and strength. I feel honored to have a child like Anthony. (And my daughters!) And I feel blessed by his gifts and the lessons he's taught me. I wouldn't be any of the things I mentioned, (positive, patient or encouraging and many others) without the relationship I have with him. And I feel incredibly grateful to have him. In fact, some other time, I'll share how having him has brought me to exactly where I am - the happiest I have ever been.

But there are times. When the rose color is blue. When his tantrums are tough. When he's not invited to things, but the girls are. When his friends try to interact with him, and he shuts down. When he tries so hard to communicate and then gives up. When he won't move until he's good and ready, but we're late and rushing him just makes it worse. When I feel guilt, over everything I wish I woulda, coulda, shoulda. When the other people look at me like I am a bad parent when he won't listen or "behave". Or when people look at him, and make judgments about him. When I really, really want to take better care of myself, and just can't figure out when to fit me on my list of things to do. And when I finally have the chance, I am too damn tired to do it.

Here's the real deal.

I am tired.

I am sick of driving to Woodbury.

I am always rushing, yet always late.

I am trying really hard to take really good care of my family, but I am pretty sure it's still not enough.

I want to just quit sometimes.

I want to sleep.

I want to be alone.

Life is just not always what it seems, or what you think it should be.

Insecurity creeps in un-expectantly and takes your breath away.

At the end of the day though, despite what we want or how we feel, we still have to fight for the things that matter. Sometimes really hard. Because they matter.

So, as I sit here writing to whoever reads my random thoughts, I am also praying. Praying to God, that the worse moves through as promised, and we get to the "better".

My son is changing, I know it. I see it. I feel it. Even though he is still struggling, the intensity and lengths are still improving. He does calm down faster, and more independently. He is growing and he is still more social. So even though we have hit the rough patch everyone does, it really is still helping. This is supposed to happen. So far, he is doing everything they said he would.

So, Dear God, please get us through this. If what we saw was a glimpse of things to come. Please God, bring on the full view. And let it be Red Roses.

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.