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.

Dear You, About Those Friends...

My Dad never said "I love you" when I was growing up.  He grew up in a time when men just didn't say that - especially to their sons.  It was something I never understood.  Did I know that he loved me?  Loved us?  Sure.  He was a great Dad.  He was a great provider.  He helped us with our homework, he coached my brothers' sports teams, he danced with our Mom in the kitchen and wrote her poems.  But he just couldn't say those three little words.

So one day, I called him on it.

"Look, I know you love me.  You know you love me.  So from now on - you have to say it."

I will never know if that was the conversation that did it, but slowly he started to say it.  And he never stopped.  Our very last conversation ended with... "I love you, honey.  Keep the faith."

I probably could have had an issue with him not saying those three words growing up.  I probably could have never said a word and privately resented him for not meeting my need to hear that phrase.  But along the way in my life I've learned an important lesson.

You can't hold anyone accountable for what they don't know.

Dear you, 

I get it when you tell me that it's easier to just not talk to people now that you have a special needs child.  They don't understand!  They mean well, but they say the wrong things.  And close, close friends that you shared everything with and always 'got each other' are not supporting you at ALL like they should.  The damage may be irreparable - your friendship may not survive, you fear.

To that I say, I was there too.

I was there when I was in my early twenties and had a horrible, very horrible, nearly killed me eating disorder.  I was hospitalized.  Several times.  I had a lot of therapy and was given a lot of new "tools" which I used - but not well.  No one could understand my new language; therefore, they needed to be pushed away.  My Mom, my Dad, my siblings, my friends - they were all idiots and I wasn't getting my  needs met at all by them because they didn't talk or act or help like all of my new "hospital" friends.

I was there when I was in my thirties and I had my first miscarriage.  Some people actually said, "It's probably for the best." and "This was God's way of taking care of a baby that was imperfect." and "You can try again." and more.  I hated all of those stupid sayings.  ESPECIALLY from people who didn't even have children or never lost a child.  No one understood what I was feeling - this wasn't just a "pregnancy" - this was our BABY!  This was a broken dream!  My heart was broken!!  People said and did all the wrong things.  Why couldn't they see what I needed?  Why couldn't they comfort me with what I wanted to hear... or sit with me silently and know that would have been perfect?

I was there when I had Gavin.  Suddenly even I didn't know what I needed.  The majority of our friends kept their distance.  One day I was grateful for that.  The next day I thought they had abandoned us and felt devastated.  People that came by the NICU could never get it right, either.  One day I wanted them to ask a million questions - I needed to talk about his issues and my fears in detail.  The next day I wanted complete denial - pretend you don't see the tubes, the concerned looks.  Just tell me he's the most beautiful baby you've ever seen and everything is going to be alright.  Down the road I would hear "he'll catch up" and some days I loved believing that.  Other days I wanted to scream - NO HE WON'T!  WHAT DO YOU KNOW?

I was there when I struggled and struggled to conceive.  I was immersed in the world of infertility and injectables and in-vitro and constant blood and ultrasound appointments and even egg donation.  I heard from everyone's mother, sister, brother, aunt and neighbor about their friends cousin who... "started the adoption process and boom, got pregnant" or "took a vacation and just relaxed and boom, got pregnant" or "realized that fertility treatments were against God's will and boom, adopted from Africa" or "gave up because the Universe was clearly sending them a message that they should quit."  I even silently seethed when I would hear pregnant friends say, when asked if they were having a girl or a boy - "I don't care!  As long as it's healthy!"  There were days I took that as a personal insult.  Nobody really knew what to say.

But that's just it.  Does anyone ever really say the perfect thing - in any situation?

Does anyone ever really do the perfect thing?  I mean, just exactly what you need at any given time?

I think we've all been in a situation where we are staring a friend in the face and panic.  We know this friend is hurting, sick, depressed and we think we have to come up with something to say to "fix it."  We'll never get it right, but we still find those words, unsolicited advice or well meaning phrases spilling out of our mouths.

The truth is... as we change, friendships change.  It happens when we get married and leave behind unmarried friends.  Suddenly you have less in common... you sometimes drift apart.  It happens when we have children and leave behind childless friends.  It happens when someone gets sober and leaves their bar friends... at the bar.  And it happens when you are given the unexpected gift of a child with an illness or a syndrome or a disorder or an imperfection and your friends are completely scared to death.  Sometimes those friendships can be saved, but how?

For many years, I thought it was all about "them."  "Those that never got it right by me."  "The ones that never said the right thing... did the right thing... acted the right way to help me."  

But you know what?  It's been about me all along.  I was the one that held people accountable for things they didn't know.

My Dad didn't get that I needed to hear him say "I love you, Kate." - I mean really needed to hear it - until I told him.  I can't hold him accountable for not saying it before that.  It wasn't in his toolbox.  I had to tell him to add it.

It takes a lot of bravery and self confidence to tell someone what you need.  And on the flip side, it takes a lot of self awareness and compassion to hear from someone that their need doesn't match your intentions... and change your course of action accordingly.  It's really okay to say, "I'm scared.  I am so scared - and I really need you to pretend that you're not so I can depend on you for strength.  I am going to have to figure out how to live this new life with this new child that needs SO much and I'm scared.  We're going to have to navigate this new life as friends together.  Please be patient with me as I figure all of this out because I don't want to lose you."  Along the way, your friend will screw up.  Maybe she'll panic when you asked her not to.  Be patient.  Maybe she'll complain that you are too wrapped up and don't make time for her anymore.  Be understanding.  Maybe she'll say something really, really stupid.  Try to have compassion and give her the benefit of the doubt.  It's a tricky dance, but if the relationship means a lot to you - it will be worth all the practicing.

You have a special needs child.  Will you "lose friends" because of it?  Probably.  But it's not because of your child.  Just like all of those moments in life when one person changes and the other one stays the same... people naturally move in different directions.  It doesn't make them bad people... it just happens.  I promise you, new friends will come along and you'll see that your life is not going to be only about "special needs" or "surgeries" or "hospitalizations" or "therapy".... 

Just don't forget your tool box.  Only you know what tools you need to feel fulfilled so be sure to remember to share them.

(p.s. - for the record, I am still learning this lesson every single day: You can't hold someone accountable for what they don't know.)

(p.p.s. - I love you, too, Dad.)

Love, 
me.

Princess Magic...

I have been a busy lady since I wrote to you.  I say that because I can't even count how many emails I received from people - sure that they were the recipient of my "Dear You," post.  I feel so, incredibly lucky for so many reasons.  One, because so many of you feel comfortable enough to open up to me.  Two, because I have the opportunity to help someone who is struggling see their situation from a more positive perspective.  And three - because people are reading my blog at all.  Truly - I still can't get over the number of you who take the time out of your busy lives to sit down and read about mine.  It moves me.  It matters to me.  And if you ever think that something I write helps you in ANY small way... you being here helps ME more.  So, thank you to all of you who wrote to me following "Dear You,".  And thank you, too, for the anonymous comments that were left.

So.... I have not been here since Thursday so we have much to catch up on!!

This past Thursday I had my first phone call from one of my childrens' schools with a "please come pick up your sick child!"  Gavin!  Miss Megan called to say he had been inconsolable in class.  When they took him to the nurse, on a hunch, he had a slight fever!  He's fine!  He's congested, but the fever never came back after that.  

Friday had me back at Gavin's school.  They held an "information session" for parents who have kids that need services... meaning any type of therapy or extra help.  They basically wanted to let us know that they would do everything they could to support our child - providing a psychologist, therapy services, accommodations, etc.  I didn't ask a single question during the meeting... I couldn't.  Every question I wanted to ask had me choking back tears at the thought of even voicing it.  Like, "Is it possible you will tell me that the "Kindergarten Center" is not appropriate for Gavin?" or... "Are Gavin's needs to overwhelming for him to be in a regular classroom?"  or... "You keep talking about 'readiness testing' - are there children with developmental delays like Gavin in this school that clearly couldn't pass a 'readiness test'??"

I decided to save these questions for my private meeting this week.  There's no turning back - Gavin is formally being registered for Kindergarten.  Where he will go - and if they will allow him to keep Miss Sara as his buddy (please, dear God, please.) - is all up in the air.  I have said in the past that I'm not always sure that inclusion is right for Gavin - but I may have changed my mind.  At least for Kindergarten.  I would love to see him stay there for another year!!

Saturday morning I sent Ed out of the house so Brian and I could make him a birthday cake!  (Gavin was completely disinterested and was happy to play with his toys while we made a mess.)

Today at lunch we sang Happy Birthday and wished for all of his wishes to come true.

I am secretly wishing to one day get him the ultimate birthday gift that he doesn't want to return.  Maybe next year.

We made fun plans for his birthday, though!  My good friends, Jen and Kirsten had bought tickets to see Disney On Ice - but their son fell ill and they couldn't go.  We bought their tickets and decided to give it a shot with the boys.  To be honest, we didn't expect much.  Brian hasn't seen any of the Disney Princess movies - and that's what the show was centered around.  And Gavin - we just weren't sure he'd be into it.  

Boy, were we wrong.

The first thing we had to do was swap our tickets.  Our friends had purchased box seats for yesterday, but upon calling the box office, they offered to switch those tickets to today for us - and switch out seats to handicapped accessible.  They couldn't have been nicer.  

We got there an hour before showtime and were brought to our seats - a whole big row with a perfect view.  I thought Brian would be awfully bored waiting an hour just sitting there with nothing to watch.

Boy, was I wrong.

He sat there the whole time.  Daddy asked him if he wanted to go for a walk.  Nope.  If he wanted to shop for souvenirs.  Nope.  If he wanted a snack.  Nothing.  He sat in his seat clutching a post card we found in the lobby advertising the show and just waited... counting down the minutes.

And he AND Gavin were obsessed with the stadium - the lights - and the changing mickey silhouette on the curtain!

The show started and I was shocked by a number of things.  I was shocked when Brian asked - as he sat on his Daddy's lap - to hold my hand.

I was shocked that Gavin laughed a lot as he watched - and clapped with the music - and never, ever, showed a second of boredom or even overstimulation from the loud music.  He had a GREAT time!!

And I was shocked - okay, maybe not totally shocked - that I got very emotional.  I feel everything big. This was my children's first "Disney experience" and they were eating it up.  Brian was mesmerized and clapped when the audience clapped.  This wasn't a movie - it was more like a broadway show.  On ice!  He's never seen anything like it - and I was THRILLED that he seemed to love it.  (Hopefully he'll always love theater more than football or hockey!  I'm half kidding!)

Ed and I both had the same thought - we think we should start thinking about a Disney vacation.

It was a wonderful, magical experience.

Earlier in the afternoon, I experienced another magical experience.

Brian was playing by himself this morning in the living room.  Gavin, in the kitchen with me... and Ed sleeping in for his birthday.  Lately Brian has been doing a lot of imaginative play - talking things through with his puppets or stuffed animals or his Little People.  This morning he was playing with the Little People school that Gavin got for Christmas.  I hear this "conversation" and snuck around the corner to spy on him...

"Hi, I'm Brian."

"Oh, hello Brian."

"This is my sister, Darcy.  You can't see her.  She lives in Heaven."

I'm grateful I took the photo before he started talking... because what I heard took my breath away.  I can't recall the last time Brian and I talked about Darcy.  It amazes me what comes out of his mouth lately.  I am hoping that my suspicions are correct... that he sees Darcy.  I know that she is present in this family - and I feel so fortunate for that.

She would have loved the Disney on Ice Princess show today.