Juliette’s 5th Birthday Letter

My dear Juliette,

I have not only skipped age 4, but I am writing your 5th birthday letter late as well.  I hope you and your siblings, when you are grown up someday, can look back on your birthday letters and still appreciate the updates, even when they were sporadic.  When I miss one, I feel like a failure, and that makes it more difficult for me to sit down and actually do it, and then more time passes.  But here I am, writing one for you again.  I am so, so sorry for the delay.  Please know that it only reflects my busy state of motherhood and my executive functioning issues, not my feelings for you.  Because you….you are something special.  My baby girl.  My best friend.  ❤

I’ll begin where I left off.  In your third birthday letter, I spoke of your speech delay, the therapy you’d been receiving from Early Intervention, the whispers of possible autism that we’d heard, and the fact that you’d just been diagnosed with educational autism by the school district and given an IEP to begin your education with special needs preschool.  So much has happened since then, and I am blown away (yet not surprised) at how far you have come, and how much you have learned and grown.

Shortly after your educational diagnosis, we had you evaluated in our home by a psychologist through a local autism treatment provider.  You were then given your official medical diagnosis of Autism Spectrum Disorder – Mild-Moderate.  We were expecting this and were not surprised when it came.  What I need to admit and apologize for, is the fact that I went through a difficult time processing this.  Everyone told me, “give yourself time to grieve.”  It’s practically a mantra in the autism world.  As “autism parents” (in quotations because I have come to hate that term), we are supposed to grieve for our children.  I don’t think I was grieving as much as I was just afraid.  Everywhere I looked, there were people saying and writing terrible things about autism.  It practically felt like a death sentence.  “She may never gain functional language.”  “She may never progress beyond a certain point.”  “She may never live independently.”  Everything was so negative!  Yep, I was terrified.

What turned things around for me were two things: realizing that I am also autistic (the apple does not fall far from the tree), and simply looking at you and knowing that you are not a tragedy.  You are nothing to fear.  You are not something to grieve.  You are something to celebrate!  You are a beautiful, unique, brilliant and whole person – exactly the way you are, and you don’t need to change.  All the fear mongering, negative things I was reading about autism and autistic people were simply bullshit.  I’m glad I didn’t fall into it for long, but I regret every moment that I wasted worrying and being afraid for your future.  Nothing is set in stone for any child, regardless of neurology.  You may need me to support you in different ways as you grow, but I am just the parent to be there for you.  We understand each other because we are so alike.  I will ALWAYS be here for you, Juliette.  Always.  I wish I could change the world, and all of the negative attitudes and misinformation about people like us, but all I can do is continue loving you, and parenting you to the best of my abilities.  Who knows what the future will hold?  All I know is that yours will be bright.

The progress you have made since your diagnosis has been vast.  Right after your third birthday, you started in Mrs. Emily’s special needs preschool class at the elementary school down the street.  You went there for two years, and it was the best thing for you.  You truly blossomed there, and it was so wonderful to watch!

When you first started, I would get you off the school bus each day, and as we were walking to our door, I would ask you how your day went, and what you had done at school.  At the very beginning, you couldn’t answer those questions.  Sometimes you would repeat the question back to me.  Sometimes you wouldn’t say anything.  We were still working on the whole “functional language” thing.  One day, a few weeks in, I got you off the bus and asked you those questions, and you looked right at me and said “I paint.  Two colors.”  Later, I looked in your backpack and pulled out a painting made with big sweeping brushstrokes of bright blue and red.  It was the most beautiful thing I had ever seen, and I wept.  This painting symbolized a huge breakthrough in your development, really the first time I had asked you a question and you had communicated a response made up of your own words.  I still have the painting.  I can’t wait to show it to you someday.

Your speech progressed rapidly from there.  By the end of your first year of preschool, you could chat and have little conversations.  By the end of the second year, you could have single-handedly taught the class!  You knew every word to every song, and would sing and dance with gusto.  You had made lots of friends, all with various special needs.  Mrs. Emily and your speech therapist, Suzette, absolutely adored you.  They told me how you always encouraged the other children to participate.  Your sunny disposition was a welcomed addition to the classroom.

Halfway through your second year, you also began attending Connections, a special school for autistic children.  You had gotten funding through the CLTS waiver program for one year, which you are just finishing up now, and we are trying to get approval for another year.  Connections has also been wonderful for you, and we have seen more and more growth.  One of the things they work on with you is eating.  You have recently begun trying all kinds of new foods.  At Thanksgiving, you tried lettuce, spinach, mashed potatoes, and cranberries – all on your own!  We were so proud!  Maybe someday you will have a more varied diet than your mother….haha.

Academically, you are doing amazing!  You know all your upper and lowercase letters and the sounds they make.  You are learning letter blends, and beginning to sound out words.  You should be reading in no time.  You are good with numbers and like to practice doing simple addition.  You are a very smart little girl!

Socially, you are doing well.  You have always been a social butterfly.  You have many friends, at Connections, at the montessori school you are attending this year, and in the neighbohood.  Occasional conflicts arise when kids don’t follow the rules, or don’t go along with your expectations of how things should go.  You are getting better at resolving them though.  With your friendly, welcoming nature, it’s no surprise that people are drawn to you, and that you make friends so easily.

In our family, you get along well with your two brothers.  You and Lennon are starting to argue more, and have more of the classic big brother/litle sister kind of relationship, like my brother and I had growing up.  Sometimes you play well together, sometimes not.  I see your love for each other though.  That bond will always be there.  Your little brother, Roland, came into your life two weeks before you turned three, and you have adored him from the start.  You still call him your baby.  He is a willing sidekick in all your little games.  He has learned so much from you, and you have learned how to be a big sister.

You are continuing to learn new things and you are growing all the time, but one thing has remained consistent with you throughout your five years of life.  You are so happy and cheerful all of the time.  You brighten up every room you walk into.  You just radiate positive energy.  I’m in awe of this, because it’s one of the ways you are different from me.  I was a quiet, shy, difficult to please, and often moody child.  You are none of those things.  I swear you’ve been smiling and laughing since the day you were born.  I hope you never lose that sunlight that you have within you…..as one of the aides in your preschool class once called it, your “magic.”  ❤

Juliette, my love for you is endless.  You often say to me, “we’ll always be best friends,” and I surely hope you are right!  I’m always here to listen, to guide and teach you, to play and laugh and be silly with you.  You have changed me for the better.  You’ve shown me the benefit of staying positive, the wonders of laughter and discovery.  I am so grateful to have you in my life.

Love always,

{Image is a photo of Juliette, sitting in tall grass, playing a guitar.}

It takes a village

They say it takes a village to raise a child. I think that in some ways, our “villages” are getting smaller as the years pass. Times are changing. There is an ominous feeling that we can’t — or at least probably shouldn’t — trust anyone with our kids except ourselves. We are solely responsible for bringing up our own kids. We almost have no choice but to become “helicopter parents,” hovering over our children, fiercely protecting them and shielding them from the scary outside world.

However, when you’re unexpectedly thrown into raising a child with special needs, you quickly realize that you have no choice but to find and embrace your village, to let go and to trust others to help your family. Suddenly, there will be therapists entering your home and working with your child. There will be appointments with various doctors and specialists. There will be thorough evaluations, spanning hours, where you will watch your child’s every move recorded and scrutinized. There will be advice. Oh goodness, so much well-meaning (but often frustrating) advice.

In the midst of all this confusion and uncertainty, this struggle between holding tightly and letting go, a few kind people will shine their lights into your world. These people are your villagers.

A villager will take the time to truly get to know your child, to gain her trust, get into her world and to meet her where she is at that very moment.

A villager will genuinely laugh at an awkwardly told knock-knock joke or a line of scripting from a TV show, even if it’s the eighth time they’ve heard it that day, because they see the beauty in your child’s attempts to communicate and connect.

A villager will gently encourage growth while still respecting your child’s rights.

A villager will watch, beaming with pride, just as you are, as your child achieves a milestone you may have never thought was possible. 

And… perhaps it wouldn’t have even been possible without the villagers’ help.

Every single day, the villagers are showing up to their jobs, but not just working for a paycheck. They are changing lives — and not just the life of the child they’re helping, but the parents, siblings and other loved ones will be forever changed by their work, too. The villagers may not think often about the significance of what they are doing, but it is huge.

To our villagers: I thank you from the bottom of my heart. My children would not be where they are today without your kindness, your patience, your dedication and your knowledge. There is a big world out there, and our villagers are paving the way for my child to find her place in it.

To the parents of children with special needs: Seek out your villagers… you will know when you find them. Trust them. Learn from them. Gradually begin to let go — and watch your child travel from his village out into the world.