I few weeks ago I met the grandmother of a child newly diagnosed with Autism.  A new chapter for the whole family as a mind boggling reality begins to sink in.  I promised my new friend that I would write a post to let that little mother know that she’s not alone! And already I see I need the tissue box…

The night before we went to the University where our son received a diagnosis of Asperger’s Syndrome a friend came to me in a dream.  She had been like an older sister to me and had passed away during childbirth a few years earlier.  In my dream, I walked into a beautiful building and she came out of an adjacent room and into the hallway where I was standing.  She looked at me with compassion and walked to me and hugged me. That was the whole dream, but I woke up feeling so comforted and understood and stronger.

It wasn’t until the next day when the doctor said, “Asperger’s” that I realized that Anne had been there in my dream to help me deal with all that the diagnosis implies, the grieving and the restructuring of my plans. Of course at the time there is no way to know what doors having a diagnosis might open and which doors it might inevitably close.  And then you realize that a diagnosis only represents what you already knew somewhere inside; that this child is seeing the world differently than you do and you’re headed on a journey to try to understand that unique perspective!

You walk around in a daze for awhile. You forget and then you remember again.  You get sad and wonder if there has been a mistake.  Then you see a new issue arise and you hope that someone will know what to do to help!

Of course no two lives are just alike and no two family’s stories could possibly be the same.  But there are certainly similarities and so for what it’s worth let me just express, that to some degree, I know how you’re feeling.  As I have looked back, I have a clearer view of the road we have traveled, and so I offer this list of things to consider that might be helpful to you as you begin your walk.

~Your child with disabilities has many abilities that others don’t have.  Know that this is true and look for those abilities and capitalize on them!  My son is incapable of saying anything bad about anyone.  He is kind to animals and does not know how to be depressed.  He is tenacious beyond reason and keeps growing even when it is very difficult.  He is my hero.  As a couple and as a family, we have come to realize that being a family with a disability has grown us in ways we are still figuring out.  I am profoundly grateful that in the midst of such struggle comes such growth.

~You are the only mom.  There will be doctors and therapists and specialists of all sorts, but you are the only mom.  And as the mom you are entitled to inspiration and insights that only you and your spouse qualify to receive.  I say this because there were many times that I second-guessed myself and my ideas and those are the times I have regrets.  Yes, you will need the expertise of others, but ultimately you are the one who is calling the shots and you need to feel good about the plans that are made for your child.  So if you feel uneasy, listen to that feeling and give it expression!  Everyone else involved is there to support you and your family, not to tell you what to do, so listen to and consider their counsel, but claim the final say.

~If you have other children, know that this challenge is theirs too.  Do your best to let them talk and then validate their feelings of frustration and sadness or even anger when they hit. You don’t need to fix them! Just listen to understand. Ultimately, my children have grown in ways that they couldn’t have without this experience.  Listen to them and help them find ways to deal with their feelings.

~Just as your children need to be heard, YOU need to be heard too.  Express your frustration, your sadness, or whatever you are experiencing to a qualified professional or find a secluded spot in nature and LET IT OUT!  The problems come when all of your intense feelings stay inside.  You may be tempted to try to explain things to those who have not lived with your situation and for me, that led to increased frustration!  Do you know other moms who are dealing with similar challenges?  Do you have a therapist who knows your situation?  Those are the people who can offer validation and empathy.  But even if you just shout out to the trees you’ll be better off than holding your tongue and expecting yourself to stop feeling.  You’re welcome to write to me, I will hear you!

~You need breaks.  All moms do, but you need them more often.  Please, please accept that fact and create a way to keep yourself healthy and balanced.  Ask for help and become the best receiver of all time!  Being a hyper-vigilant parent when it is needed has a price, and believe me you will be paying the piper if you don’t take the bull by the horns and advocate for yourself while you are advocating for your child. {Contact me if I can help you figure this out.  No charge!}

~Life is hard and love hurts.  It’s supposed to be a challenge to grow us so don’t be tempted to get caught on the wheel of “what if.”  It is worth the risk to love and to hope.  I experienced times when I would be so overcome with the challenge that I would feel completely alone.  Those are exactly the times when we have the choice to opt out of feeling or turn to God for his comfort and strength.  Do your best to allow this experience to grow you and your family, without resistance.  (I know that sounds crazy, but remember this is my retrospective view!)

~I firmly believe that all things work together for our good when we put our hand in God’s and let Him lead us along.  Events that could be devastating can actually turn to joy when your perspective is that of a humble child asking for guidance from someone much wiser than you.  He loves you and He loves your child.

I hope that something I have expressed here might be inspiring to you.  Mostly, my message to you is that YOU ARE NOT ALONE.  I understand the grieving process that you will or have gone through.  The prayers and pleadings that will arise from your heart.  The tears that will come and the ultimate joy that will be yours.

I send you my love and my best wishes. Please kiss your little one for me!

Sincerely,

Jacque