we-are-robots...

This morning, while Brian was at school, Gavin and I got down to business in day two of "Mommy Boot Camp!"  We worked on the communication cards again... spent some time coloring (reluctantly) at the art table... and I ditched the crawling down the stairs idea and started teaching him to WALK down.  Yes, walk.  And do you know what?  He actually handled that better.  Once Sara gets back, I'll get it on video.  It's definitely something you can't step back and videotape on your own!!

I took a few videos of Gavin walking, too, so you can see his progress.  He's doing such a great job.  Believe it or not, he's an even better walker in bare feet or socks with treads.  But take a look at these two videos...

When it turned 11:15 and I announced, "It's time to go pick up Brian from school!" I heard a big squeal.  Gavin was so excited that his little brother would soon be home!

Then, in a moment I can only call "inspired by Martha Stewart on Pinterest," I created a piece of art I called a "sealed circle fluffernutter sandwich" for Brian.  Would you like my recipe?

Get peanut butter.  As long as your child isn't allergic.  If so, find something else.  Like fake peanut butter.

Get Fluff.  Or use what I use:  Gluten Free Ricemellow.

Apply both liberally...because that's how you're supposed to do it.  You can't have too much peanut butter OR fake fluff.

Take a small circle container - press down hard - cut around the container - and you have a sandwich that won't "ooze" and drive your particular kid nuts (so to speak) that doesn't appreciate sticky fake fluff fingers!

Be honest - you're impressed, aren't you?  Could I make it on Pinterest??  Should I send this to Martha Stewart??

*wink*

Brian definitely approves!

As we sat at the table eating lunch, Brian said, "Mama?  Are we going to skip our rest today?" with a cute little tilted head.  He asks this question every day.  Sometimes, the answer is yes.  But today I said, "Not today, buddy.  Mommy's not feeling good.  I think we'll ALL take a rest."  He thought for a few seconds and then slapped his hand on the table, "I know!  How about you go take a rest and I'll take care of Gavin.  Then when you wake up, I'll have lots of water and tea down here for you to drink.  You need to drink a lot to get better."

He may have been angling to get out of his rest, but it sure touched my heart.  I love this child.

We did all take that rest, and when we woke up - as promised - Brian promptly filled up a cup of water at the refrigerator and delivered it to me.

The rest of the afternoon, we just played...and read books...and painted.  I took a video of Gavin and Brian 'playing' together that I wanted to share.  It's a little long (5 minutes!) but it gives you a great idea of how obsessed Gavin is with his little brother.  It shows how excited he gets - how much he laughs - and how he seems to understand some of the things he's told.  If you can spare a few minutes, I think watching this will make you happy!!

We ended the day in a non-typical way.  Usually, the boys and I have a dance party in the kitchen before dinner.  Today I decided - with my head pounding and feeling miserable - I felt more like a robot.  So robots we were.  

And we rocked it...

The Pictures Tell The Story...

In our little family, we prefer to celebrate the "minute" details of every day.  

While these "minute" details may seem unimportant to some...they are everything to us.

We celebrate everyday miracles big and small.

And we plan on keeping it that way.

Sometimes you have to let the pictures tell the story.

Many of these photos are blurry...but that is the whole point.

I have (with sadness) decided to institute a few new "policies' on my blog.  Mostly to protect my feelings, to be honest.  This is my blog - about my family, and my life, and my kids, and my emotions and my parenting style.  It's not a public forum to decide to unleash your venom on me or to list all the things you hate about me or to tell me I'm a "joke" and a "helicopter Mom" or that you feel sorry for my "typical kid" and my "man" and that I make a "big deal out of everything that is minute in the sense of the word."  I probably shouldn't admit this, but it affects me a great deal when people go out of their way to tell me how horrible they think I am.  What is the point, really?  And when I know that I have accepted this commenter as a friend on Facebook...it makes me want to cry.  You don't have to agree with me.  I'm sure there are thousands of other bloggers out there that you can choose from that align with your way of thinking.  Just move on.  It really, really, really hurts my feelings.

I know it can be a pain sometimes to comment using your name or URL - but I am not allowing comments under "anonymous" anymore.  It's a shame because I get a lot of great comments under the "anonymous" profile whether people sign their names or not.  If you want to get a comment or a message to me, feel free to email me through the blog or head to the Chasing Rainbows Facebook Page where you can send me a message.

Speaking of Facebook.  I have naively accepted any and all friend requests over the years from readers who are complete and total strangers.  It doesn't take long (at least for many of you!) for us to become friends once that happens.  But I am sorry to say, I will not be accepting any more random friend requests unless we have some type of connection or correspondence.  EVERYONE is welcome to "like" the Chasing Rainbows page.  I just ask that if you stop "liking" it, just quietly go and don't go out in flames with a hate filled rant on the page.

Who knew that a stay at home Mom who is trying her best to be a good wife, raise a special needs kid and the little brother who loves him, and bravely share it ALL in the hopes to help others could inspire such hatred?

Sailing Through The Weekend...

We've had such a busy weekend!  It seemed to sail right by!

On Thursday, after I picked Brian up from school, I surprised him with a "Love Bomb" date!  The two of us went to a local diner right around the corner from our house. I told him he could pick anything he wanted from the menu.

He asked for pancakes and strawberries...and that's just what he got.  This diner, "The G Lodge," has a bit of history in our little town!  M. Knight Shyamalan filmed a portion of his 2008 movie, "The Happening," in this diner.  Actually, I have been in line at Wegman's with Mr. Shyamalan's personal chef a few times.  Suffice it to say we have very different grocery orders.  

When it came time for dessert, the waitress asked Brian if he'd like ice cream.  She said, "Would you like vanilla, chocolate or strawberry?" and Brian paused for a second before saying with a big grin, "I'd like MOOSE TRACKS please!!"  We all cracked up - it came out of nowhere.  This child has never had Moose Tracks ice cream in his life!  Much to our surprise, they had it!  So.... Moose Tracks it was. Brian and I have been replaying "Vanilla-chocolate-strawberry-MOOSE TRACKS!" and giggling all weekend.  And then, on the way out, we put fifty cents in the crane game - the one that I am NEVER EVER lucky with - and Brian won a toy on the first try!!  It was such a fun date.

On Friday, Gavin, Brian, Miss Sara and I went for a long, overdue visit to Dr. Trish!  Gavin and I were treated in one private room - and Dr. Trish treated Brian in another private room while Sara stayed with him to watch.  This was Sara's first time meeting (and witnessing) Dr. Trish and she loved it.  At the end of the session, Dr. Trish told me she kept being led to Brian's mouth and asked me if he hurt it somehow or had been sick.  I couldn't believe it. He had just told me the day before that his mouth hurt.  I think he must have bit his cheek or his tongue.  Dr. Trish has such a gift.  Brian's mouth has been fine since!

The best part of the appointment was when I told her about our plans to remove the mercury from Gavin's system.  As soon as I mentioned what the medical medium had told me, she broke into goosebumps.  It just so happens that she is making changes in her practice to include homeopathy and treatments just like this!  And she told me she had just read a case study the night before our appointment about a young child that was on life support.  They were  making plans to remove support and let him die when an intuitive came in and diagnosed him with mercury and heavy metal toxicity.  They were able to treat him successfully - and he recovered.  

Nothing is ever by accident.  As you know, we have a long history with Dr. Trish and she has helped us so much.  I am going to have her monitor the supplements that Gavin is on (and me, too!) and we'll be going back to regular treatments with her during this whole process.  She also has connections with a woman who does testing for mercury and heavy metals.  I was all set to figure out how to send our blood and urine to a very expensive lab in France - but now I have someone local that can not only test us, but offer us guidance and support!  I'm so thrilled.

Ed and I and the boys spent most of Saturday out of the house.  The boys had their mop tops transformed from this...

...to this!  The shortest I've ever had Miss Silvia go.  Total buzz cuts - even on the top.  I love it!

We went straight to Granny's house from there.  Ed helped her set up a new TV while the boys and I had fun scouring her house for treasures.  She's preparing to move and as she cleans out cabinets and closets and attics and corners, she is finding treasure after treasure.  In her dining room buffet, she found a teething ring and rattle that was given to me when I was born from our good friends in Maine, the Kilbreths.  If you can see, it has Kathleen Marie engraved on the rattle.

She also sent Brian home with a ton of treasures!  One of which was a Watercolor Paint set which he has been playing with all day today.

Hopefully he will inherit his Granny's artistic talent!  One of the other treasures...perhaps my favorite... was an oil painting she forgot she ever had!  She moved an old filing cabinet in the basement - and underneath, perfect and intact, was this gorgeous painting of her's!  I hung it in Brian's "nautical themed" room and it looks perfect.

Our entire afternoon today was consumed with cooking.  Together, Ed and I made 29 quarts of food for Gavin.  We made Yams, Quinoa and a Veggie Stew which contained parsnips, peas, carrots, celery, leeks, corn and the newly added cilantro as part of his mercury detox.  

Our house smelled amazing and I'm still shocked that our food processor didn't blow up.  We definitely put it to work today!  Gavin wanted to be part of the process several times throughout the afternoon.

Since we saw Dr. Trish on Friday, Gavin's walking has greatly improved.  It's quite shocking to us that he was just casually walking around by himself all weekend.  He just takes off!  Check it out...

I'm pretty confident that seeing him walking around will never... ever... get old.  

We are so lucky.  And we know it.

Dear You, When It Comes to Professionals...

I felt blindsided when Gavin was born. 

Not the "I expected a girl and got a boy" kind of blindsided.  Or the "I planned for a natural birth and had a C-Section" kind, either.  I felt blindsided because I realized rather quickly that I was out of my league.  With my own child.  He had so many issues and I had to rely on nurses in the NICU, doctors attempting to diagnose him and well meaning social workers trying to make things right in my world.

I needed all of them.

I hated all of them.

In the beginning, I expected so much from these professionals.  I hung onto every word - and then resented their every breath.  

Dear you,

I know what you mean about expecting people... expecting anyone!... to say the right things.  But I have bad news for you.  They never will.  Just like I said in my "about those friends" letter, no one will ever know exactly what you need.  You can tell your close friends and family, but you can't really do that with professionals.  You can tell your Mom or your sister or your friend, "Listen, it would really help me, emotionally, if you didn't say 'Wow - your life really sucks.' every time I tell you something about the baby's issues.  But you can't really say to a professional, "Listen, Doc. Can you hold my hand while you break more bad news to me about my child?"

But.  There are some things you CAN do.

When Gavin was an infant and I had to bring him to the pediatrician for developmental visits, the nurse would always run down her "typical" checklist.  "Is he holding a rattle?"  no.  "Is he making eye contact?" no.  "Is he sleeping?" no.  I would leave there in tears every time thinking, WHAT THE HELL??  Why would they ask me these things knowing that my child can only lay there and is CLEARLY not following the "developmental checklist."  I felt so defeated - and so hopeless about Gavin's bleak future. But they didn't know  - they were only doing what they were used to.  I know they didn't intend to crush my spirit or hurt my feelings, so it was hard to be upset with them.   So I took control. I brought in a typed up sheet for each visit listing "All The Things Gavin CAN Do" and asked them not to go through the checklist with me anymore.  They were so relieved - they had always felt awful asking me those questions.

For the rest of your life with your child, you will encounter lots of professionals with lots of advice and opinions.  I have a great, great respect for people who devote their life to helping our special kids.  Whether they are doctors, therapists of any kind, psychologists, teachers, personal aides or nurses.  I come from a place of trust - so I always assume that professionals come from a place of compassion and are well meaning.

That being said... you will need to get used to hearing things you don't like.  Getting advice that doesn't fit.  Hearing statements that rub you the wrong way.  Getting a suggestion that seems ridiculous.  Or  feeling offended or judged.  "How could that happen??" you may ask.  "Why would she say that?" you might wonder.  "Who does he think he is?" you might shout.  Here is the secret: they are human.

You'll encounter professionals that give you advice based on what they've learned from books. Or, very often people will bring what worked well with one family and assume it should work well with yours.  It's hard, but you have to imagine a filter in your brain and heart.  Take everything in with some nodding and smiling - keep what you can use - and disregard the rest.  I think most of the time people's intentions are good and they are trying to help, even if they're not helping at all.  Just appreciate their efforts internally and let go what pisses you off.  It will only hurt you if you hold anything against a professional (or anyone, really!) who isn't involved in your every day life.

It's critical to follow your gut.  The doctor treating your child isn't communicating well with you?  Find another.  Your child cries and cries when one particular therapist comes to the house - but doesn't cry for any of the others?  Find another.  The social worker assigned to help you isn't really helping you at all?  It really is okay to find another.  The worst thing you can do is to internalize things that people say or do.  And I think your biggest downfall in getting used to having a child with special needs will be expecting people to make it better with their words or actions.  They will fail you every time.  YOU have the power to change your perspective and your feelings - and YOU have what it takes already to know what is best for child.  It may not feel that way, but it's true!!  

The other day, a friend posted this quote on Facebook and I felt it really summed up my philosophy:

“If you don’t have garbage, you have nothing to use to make compost. And if you have no compost, you have nothing to nourish the flower within you. You need the suffering and afflictions in you. Since these feelings are organic, you can transform them and make good use of them.” ~ Thich Nhat Hanh

Having a child with special needs is not easy.  No one will every say that it is.  And you will have feelings of anger, resentment, grief and sorrow many times along the way.  Don't stay there.  Use those feelings to empower yourself into action.  The more positive YOU are about your child's possibilities... your child's future... your child's daily life... the more positive OTHERS will be, too.  I promise you this is true.  Take this blog for example.  I can make a fuss over something simple like this photo which, to any outsider would not be a big deal.  But because of this community I've created, everyone knows that this photo is a dream come true for our little family.  Seeing my two sons holding hands and walking together?  There's nothing like it.  And because I shared, people can celebrate that moment with me.  I can assure you - feeling the excitement of people over this photo empowered me as Gavin's Mommy.

And because I have created a space where Gavin (and Brian!) are celebrated and lifted up and encouraged on a daily basis, people want to join in and participate!  People love to be a part of positivity.  Create it - and you will attract it.  You'll see.  And you'll see a difference in your child, most importantly.  

Positive energy is contagious.

The professionals that will come into your life are people first.  Make sure they know your child.  Not just know the diagnosis or the features or the medical conditions.  Make sure they know your child.  Get them excited to see your child.  Include them in your child's great accomplishments so they feel like they are part of this great ride into the future.  

Just don't expect them to make it better for you.  Truly, the only person that can make anything better for you... is you.

With every good wish for a positive future, 

me.

I Should Have Stood Up For Love...

To the lady at the Adventure Aquarium in Camden today:

Hi there.

You and I were at the Aquarium at the same time today.  I was there with my husband and two boys.  You were there with three boys - and a baby in a car seat.  We seemed to be on the same tour as we meandered around the aquarium.  Except I think our children had vastly different experiences.

You see, I have a son with special needs.  I took a chance and decided that Gavin would walk as much as possible today.  It was so crowded and kids were running everywhere - but Gavin, who is really just learning to walk at five years old, really held his own.  Sure it held us up - but from what?  We brought the kids to the aquarium to have a fun morning and we certainly weren't in a hurry!  Plus, Gavin walking is such a huge accomplishment as it is.  It's amazing that he walked amongst the overwhelming crowds for such a long time.  I hope you noticed how encouraging we were towards Gavin and how even his little brother would frequently pipe in with a, "Good job, Gavin!"  

Words matter.

Meanwhile, it was hard not to notice you.  You seemed to isolate your wrath on just one of your sons who looked not a day over seven.  The first time I heard you, your son was lagging behind your family.  

"COME ON!  HURRY UP!!  WHAT? ARE YOU SLOW?  CAN...YOU...NOT...UNDERSTAND...ME??!!??"  

I hurried Brian along and hoped that he didn't hear you.

Lately, Brian has been obsessed with snacks.  He tested me at every corner with "When are the snacks, Mama?"  "Is this when we have our snack, Mama?"  "Is it time for a snack, Mama"  "I'm hungrrrryyyyy, Mama!!!"  It got a little irritating, but I came up with a compromise.  I wasn't going to fight with him to "STOP ASKING ME FOR A SNACK!"  It wasn't important to me.  I hope you noticed that I picked my battle.  

Patience matters.

Meanwhile, you were having your own battle.  We were in the same place at the same time again.  Ironically, at the shark exhibit.  As I stood with my sons, watching the sharks circle above us... it was hard not to notice the sharks circling your son.  You were berating him for his shoe being untied.  

"GET DOWN THERE AND TIE YOUR SHOE."  

I glanced over several times to see his huddled body kneeling on the floor trying hard to tie the laces while your eyes - and the eyes of his brothers - pierced his rounded back. 

"WHY CAN'T YOU DO IT?"  "YOU'RE NOT DOING IT RIGHT, STUPID!"  

At this point, Brian caught on to the angry energy and caught my eye.  I just smiled and said, "Look at the sharp teeth on that shark up there!"  When I really wanted to say, "Hear the sharp words from that angry lady over there?" as loud as I could.  

I felt the urge to say something to you.  But I didn't.  And as I heard whispers and saw eyes dart your way, I noticed that nobody did anything.  We all minded our business.

It got a little too crowded for us, so we decided to leave.  As the elevator door opened to the lobby, my heart sank.  There you were, sitting on a bench with your family... still yelling at your cowering little boy.  Ed was kind enough to run out to the car on this frigid day and warm it up for us... which meant that you and I were across from each other for ten whole minutes.  

"PUT YOUR COAT ON, DAMN IT!"  

Mama, why is she yelling?  I don't know, Brian.  She seems pretty angry, huh?

"Can you help me zip it, Mom?"  I heard your son sheepishly ask you.  

"WHAT???  YOU KNOW HOW TO ZIP YOUR OWN FREAKING COAT.  DO IT.  NOT LIKE THAT!  YOU'RE GOING TO RIP IT!  I SWEAR TO FREAKING GOD, IF YOU BREAK THAT ZIPPER OR RIP THAT COAT YOU WILL NOT GET ANOTHER COAT I DON'T CARE HOW COLD IT IS. YOU ARE SO STUPID.  STOP CRYING! STOP IT! I'LL GIVE YOU A REASON TO CRY, DUMB ASS."  

As your other boys giggled at their brother getting pummeled with insults, one of them spoke up and asked, "Want me to zip it for him, Mom?"  

"NO! THE CRY BABY KNOWS HOW TO ZIP HIS FREAKING COAT - NO ONE HELPS HIM."  

I stood there frozen with my back to you - staring at my two boys.  I know what it's like to feel impatient.  It happens to the best of us!  And I'm surely not perfect and don't have any "Mom Awards." But as I looked at Gavin and Brian, and saw Brian's eyes as he heard you yelling... I wanted to cry.

I turned around towards you.

I stared.  And I stared.  I was beaming energy your way and praying that you would look up at me.  But if you did - what would I do?  I wanted to show you a compassionate smile.  It would have meant, "I can see you're struggling, friend.  I don't know what's going on in your life that is so bad, but I'm sorry.  I hope you can stop taking out your anger on your beautiful son."  But I was afraid you'd misinterpret my look of compassion as collusion.  I didn't want you looking back thinking, "Yeah - see what I have to deal with?  This stupid kid??"

I continued to stare.  And stare.  What if you looked up and I shot you a look that clearly said: "What the hell, lady???" Would you get it?  Would that "check you" enough to stop yelling at him?  Or would you jump over your baby's car seat and try to punch me?

At this point, I realized I had to address this with my sons.  I leaned down and loudly said to them, "Boys, I promise you - I will never talk down to you.  I will always respect you as people.  And I will never, ever shame you... in public OR in private."  As I lifted my head, I caught the eyes of an old man sitting on a nearby bench.  He gave me a nod as if to say, "Well done."

Did I think my two little boys, only four and five, would understand what I was saying?  Not really.  But it was my promise to them, nonetheless.  And if they don't understand my words, they will surely feel that I respect them through my actions.

It's possible you are really struggling.  Maybe you have depression or mental illness.  Maybe your husband just left.  Maybe your house just burned down.  I thought of a thousand different scenarios in my head until I realized... nothing would justify your behavior.  Nothing.  

And it became clear to me that you were not new to this rodeo called abuse.  This child was not a stranger to shame, either.  If I had to take a guess, I bet you were treated that way as a child.  And I'm so, very sorry if I am right about that.

But ma'am, as much as you feel "in control" when you put that little boy with the sandy hair and untied shoe in his place... you are actually the exact opposite.  And as much as you think your other sons aren't paying attention... I can assure you, they are.  Every one of your four children will learn how to love, how to respect, how to make healthy choices and how to handle stress... from you.  You can be the one to break what is probably a generations long cycle.  That would be the most powerful thing you'd ever do in your lifetime.

Words matter.  Patience matters.  Changing matters.  

YOU matter.

I feel a tremendous amount of remorse for not stepping in.  And as I shared awkward glances with others around us that heard your stinging words, I know I'm not alone.  I should have stood up for your boy.  I should have stood up to you.  I should have told you it's possible to love yourself.  

I should have stood up for love.

(Please consider voting for my blog? I am hoping increased exposure might give us a lead on a diagnosis for Gavin!  You never know, right?!?  And check out the blog I vote for in the category "Blog Most Likely To Have You Achieve A Personal Goal - The Orange Rhino - which is devoted to not yelling at your children!  Very apropos to today's post!)

The Best Blog Entry You'll Read All Year...

Today was one of my favorite days this year.  Possibly ever.

If you remember back in October, Miss Wendy (Gavin's PT) and Miss Sara (Gavin's aide) came up with a great idea.  They decided to track Gavin's walking progress up and down the hallways at school until he reached 5K (3.1 miles!).  You can read about Miss Sara's heartwarming plan and the back story behind the chart she made HERE.

Well today was the big day.  Gavin was crossing the finish line.  Ed was able to get out of some meetings this morning... and I kept Brian home from school... and we surprised Gavin on his special day.  This was definitely something we'd celebrate as a family.

As Gavin made his final lap with Miss Wendy...

...children from the Kindergarten Center lined the hallways along with teachers, therapists and even the Principal!  Gavin's little brother, Brian, and his teacher, Miss Megan, held the finish line as everyone watched with anticipation.

It was hard to contain my emotion (as you'll see in the video quality!) as I watched my son walk through a crowd of his peers - all cheering for him and rooting him on.  Miss Wendy fittingly put Gavin's hand in Miss Sara's for the final stretch.

This moment was indescribable.

You could see the pride on his face as he broke the yellow "Finish Line."

And as Ed and I locked eyes, the five years leading up to this moment were the unspoken words between us.

We are so proud of our little superhero.

We're so grateful, too, that everyone went out of their way to make this a special day!  Gavin gets so much encouragement from his teacher, Miss Megan, and Miss Wendy.

And - there really are no words for our beloved Miss Sara who goes to school with him every day.

The walking in the hallway was wonderful.  And the accomplishment of completing the 5K was impressive.  But for me, the most moving part of today was seeing him walk among his peers so confidently.  They cheered for him and gave him the "thumbs up" and said "Good job, Gav" as he passed them.  I know he takes in every word - every smile - all the good energy.  It moved me.  

Unconditional acceptance.

We stuck around for a bit so Wendy could show off to Ed some of the things they've been working on in Physical Therapy.  Gavin's been working hard on trying to stand up from a little chair, trying to maintain his balance and then walk.  So far he's needed assistance with this.  But apparently, having Daddy there was all the motivation Gavin needed.  We couldn't believe our eyes.  I didn't even have time to focus before he took off!!

Didn't catch that?  Well, if you look through these photos slowly - it will be like a slow motion recap!

Unbelievable.

We are so proud of you, Gavin!!

This afternoon, after school, I took Gavin to one of his favorite places to celebrate.  "Arnolds Family Fun Center."   It was just the two of us and we had so much fun.

We rode the carousel three times...

And the crazy "Frog Hopper" three times.

Gavin was happy and likely thought it was his celebration.  But we all know... it was really mine.  I can't believe how lucky I am that this inspiring little boy is mine.  I have said it before and I'll say it forever.  Gavin and I were meant for each other... and he surely saved my life.