Saturday, January 28, 2012

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.

Tuesday, January 17, 2012

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.


Wednesday, January 11, 2012

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.


Saturday, January 7, 2012

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.

Sunday, November 13, 2011

To My Girls

I have been blessed with two very beautiful girls.
I write a lot about how Anthony changes my life.
But these two...they have amazing ways of impacting my life as well.
There's a phrase I like to say from time to time that goes:

"Whatever you didn't learn from your parents, your kids will teach you."

So very true.

There's a book out there called "I was the perfect parent. Before I had kids."
Now I have never read this book, I don't know who wrote it or anything about it, but the title alone, speaks volume to a million things in regards to parenting. Whatever I thought I was going to be, or do, as a parent was almost completely lost the moment each of them were laid in my arms. You can plan all you want before kids, but call it preparing, because once that child comes to you, and in each and every interaction with them, it all becomes less about you and more about them.
You will need to be much more flexible.
Becoming a parent has a way of making you really look at yourself, your values and your priorities.
And you really need to take into account who they are, each one on their own.

Like with these two.
One is emotional, one is logical.
One is sensitive, one is practical.
Both are relational, but in different ways.
One is academic, one is artistic.
One is a planner, one is more "free".
One is opinionated, one is a people pleaser.
One is a giver, one is a hoarder.
Both are full of love and spirit.
Both love animals.
Both are friendly.
One is more black and white, and one is so very gray.
Both love pink.
One is more cautious, one is more brave.
One uses band aids, one picks.
One is more subdued, one is more colorful.
One reads, one paints.
One hunts, and they both fish.
One can be bossy and one cries.
Both are loving.
Both are protectors of their brother and each other.
And both are fun and very delightful to spend time with.
And the giggles from the other room reminds me how they can both comfort
and make the other laugh.

And because of them, I have had to take a very hard look at myself.
Because both are observers too.
They watch what I say, what I do and how I feel.
And when I see the things that worry me for them,
I realize that I may have passed on more than brown eyes and curly hair.

In each interaction with them, more than ever before, I carefully think about what I say to them.

Because I want the follower to lead.
Because I want the people pleaser to value who she is.
Because I want the Free spirit to be a little more careful.
And the subdued to reach higher.
Because I want the academic to nurture her creativity and the artist to gain wisdom.
I want the more emotional one to not have her heart broken so easily.
And I want the logical one to be less serious.
Because I don't want them to confuse pleasing others with simply caring for others.
Because I don't want them to ever lose who they were destined to be,
and have to rediscover or "find" themselves in adulthood.
Because I want them to stay connected to their inner spirit.
Because I want them to love who they are, as they are.
Because I want them to grow,
And to continue to shine and sparkle as they do now.
Because through good times and bad, I want them to know and keep the JOY in them.
Because "happiness" can come and go with the wind.
These girls are precious to me.
They help me to make sure they always feel valued and honored.

And I have become very grateful to them.

Because they have blessed me with the knowledge
of just how much they watch what I do and say about myself -

that I have HAD to learn to value and honor myself.

Because all kids learn by watching!
And not necessarily by listening.

These little gems are teaching me to back up what I say,
with what I do.

And it is a challenge.

But one I will bust my tail to take on -
At even the chance to give them a better life.
So that they can always see in themselves
what I see in them.

Their beauty, adventure, simple sweetness and uniqueness. Their kindness, joy, patience, and honor. Their creativity, loving, caring and considerate skills. Their amazing talents. Their hope, courage, sensitivity and fun. They are precious and treasured gifts to everyone around them.

I pray each day to fill their hearts with value, honor, belonging and a sense of such worthiness. Because they are worth so very much to me.

Loving them is easy.
And I commit to loving them - through building and strengthening them, the best way I can.

My Bella and Emma Rose.
Thank you for the gifts you've given me.

Friday, October 14, 2011

The day I became "Aware".

October is Down Syndrome Awareness Month.
I have no idea when October was designated as the month to bring education and awareness to the country about Down syndrome,
but I've known about it now for 13 years.
Anthony was born with it and the "awareness" for us, came in June.
I think back now, and giggle at the fact,
that I became "aware" I was pregnant in October.

I have spoken to churches, schools, and doctors about Down syndrome in order to create awareness and educate. I did it a lot in Iowa, some in St. Cloud and even Fargo. I can tell you about the chromosome stuff, the many possible medical and developmental concerns that come with it and the many effective therapies you can do to help a child grow to their potential.

But, it really doesn't create awareness to throw out stats and science.

People become "aware" when there is a name, a face or
an experience to go with it.

I never noticed people with Down syndrome like I do now.
Because now it means something to me.
And it means something to my husband, and our daughters, and our family and friends.

Our awareness is heightened now.

Our education is personal now.

Our appreciation is deeper now.

Because of this little boy.
Who has made us "aware":

Of how delicate and fragile life can be.
Of just how close you can come to losing a life.
Of how much we take for granted.

That some of the most simple things, are the really big things.
That some of the easiest things, can be really hard.

That major miracles can come in the form of baby steps.
That in order to speak, get dressed, alternate steps on a staircase, or write your name in a straight line - can take years and years of practice, because SO MUCH goes into those things.

That hitting a pitched ball can make you stand up and shout!
That when he reads a book, zips his coat, does his homework or pushes the pedals on a bike - you can be moved to tears.

That life can be completely unpredictable.

That there is a bigger plan.

That there is such a thing as unconditional love.

That when he finally becomes more independent and you need to take a back seat -
you have to catch your breath, and find the chair before you fall down.

That although dreams change, dreams still exist.
That a million things can be said, without a single word.
That a hug can change everything.

That a true friendship is a rare gift.

That caring for someone so much can be thrilling and terrifying at the same time.

That some people just get it. And some just don't.

That people do still stare, and say mean things, and judge.
And that people do love, and accept, and encourage.

That you can hurt, and cry, and be so exhausted and frustrated.
And that you can have more patience, love, and joy than you ever thought imaginable.


It's one thing to learn about Down syndrome.
It's another to learn about someone with Down syndrome.

Tuesday, September 13, 2011

Handfuls of Hope

Shaun and I started this "evaluation" thing on our way back out to Missouri to pick up the kids from Camp 2 summers ago. We took advantage of the time and really looked at each child, their strengths, challenges, and our hopes for them. We then wrote up some action steps that we could take over the next year to encourage them to meet their challenges, by using their strengths, and incorporating experiences for them to grow in confidence, ability, and development.
Kind of a "purposeful parenting plan".

(I'd like to think 13 years of IEP's and goal setting had nothing to do with it.) ;-)

In our evaluation of Anthony this summer, we came to a monumental decision. Although we didn't know it at the time. The weeks to follow have proven our decision to be our best move as parents yet. As most of you know, or in case you just haven't seen him in awhile, Anthony's Down syndrome and Apraxia have made the understanding of his speech nearly impossible... still. And this communication issue and the battles that come with it have left us simply heartbroken at times. To know he is trying so hard to say what he wants, and can't be understood. To have been locked inside, for ever. To be so alone at times. I pray that my own pain watching him, IS my own. And that it doesn't kill him like it does me. I know it hurts him, but I have no idea to what extent.

While Shaun and I were talking, we realized a few things. We are at a roadblock. He understands so much more that he can say! And the speech, although improving, is nowhere where we thought it would be by now. And we realized it is just time. Time to just change things for him. Time to just unlock his silence. Time to do SOMETHING.

When he was a baby "they" said speech would come. But late. So we did sign language as a baby while we waited. It worked amazing! At seven, we were still waiting, and we found out about the Apraxia. He was showing "behavior issues" and Shaun and I talked and decided we wouldn't be the parents that "gave up", but we would increase the sign while we continued to wait until his speech came. He took off. And has continued to use it ever since.

But this summer, we realized we are there again. His understanding is more than his expressive, and he's acting up, and we need to help him. And his "speech" is still so poor. And he's 13!!! We've dragged him to Arizona and Ohio for specialists, he's been in speech therapy FOREVER and this is where we are. The realization of it sometimes just angers me. For him, for us, for his friends and family. People just struggle connecting with him, and him with them.

I have these dreams sometimes. Where I pick him up from school, or he walks into a room I am in, or we are at a store, and at some point, in each dream, I look over to him as moves closer to me, we meet eyes, and he says something - clear as crystal. Sometimes it's "Hi Mom", or "good morning", or "can I get a new car?". But it's always the most beautiful thing, and I crumble at the miracle of it in tears.

And then I wake up.
And try really hard to go back to sleep, for just a little while longer.

I still want that.

"Giving up" that speech will come is too much for me to ever say yet. I still want it too much. I want to hear about his day, know what he wants for his birthday or Christmas, maybe even what his dreams are about.

I just kept thinking it had to sound the same as everyone else. There was no reason to think it wouldn't happen. No reason that "with time" it would come. But it's just not. It's better, but it's just not there.

Then one day - BAM - it hits me like a ton of bricks.

Sign Language.
He uses it.
A lot!
We haven't been using it as much as he has, no one does. Because he hears fine, he understands fine, and no one 'has' to learn it. So we didn't, and neither did anyone else. Us, family, or school. We all knew the "basics", and that's all we did.

It occurred to me while Shaun and I were talking that if sign was his only option because he was deaf, we all would have learned it. Wouldn't have thought twice about it.

And so, we all will.
Because right now this option IS the one.

I have cried so much, and felt so sick from the guilt that I didn't see this sooner. We left it all on him, to remember it all, and only use what he knew. We didn't expand it for him, teach him new words. Sign WITH him, so he wasn't alone. I still feel so bad.

But THANK GOD, it isn't too late!!
Since starting more signing a month and a half ago, he is SKY ROCKETING!!! His fine motor skills are so much better and now he can make them sooo much more clearly. He even got a teacher for reading this year who is fluent in sign and is teaching him more words!! And he will have her for the next 3 years! We got videos and now he even uses the new words he's learned to tease me. He is telling me about his day! We've started reading his favorite books in as many words of sign as we can, and he LOVES it. Lights up! He signs full sentences and his finger spelling is really fast! I am stunned at what is happening right before my eyes.

I selfishly battled with this decision so much because I didn't want to give up my dream of "talking" with him. (ugh.) I thought if we stopped the therapies, stopped trying so hard, that it somehow meant we were giving up on him. It just didn't click that it was never that at all. We needed to give IN to him and what he was putting right before our eyes. Now that I have changed my perspective - it has changed my life!

It astounds me that my dream is coming true right here and now! Yes, I had to redefine what my dream meant, but the dreams ARE coming true. Because he IS saying "hi mom" when I pick him up from school. He IS saying "good morning" when he comes into the room. And he IS asking me for a new car every time we go to the store.
He just does it with his hands.
Clear as crystal.

And he tells us he loves us. All the time.
We have hope again!
Handfuls of it!