If you have read for a while, you will know that we have one teeny, tiny firecracker in our home.
She’s the one who keeps me running and always on my toes. No gym membership necessary!
If dynamite does indeed come in small packages…
…her name would be Hailee!
At eight years old, she’s 39 inches tall and weighs a whopping 30 pounds.
She’s spunkiness in a tiny package.
But oh, how we adore this little girl! I think back to the day I met her three years ago.
Four years old and 14 pounds.
Lying in the room at the back of the orphanage. The “laying room” for the most profound of special needs in the orphanage. It’s the place where the least of the least are sentenced to a life of confinement to a crib with very little human interaction.
I remember the day they placed that tiny little girl in my arms. Wearing a onesie for a six month old, she could barely hold her head up and was a floppy rag doll. She had a large protrusion on her forehead and one on the back of her head too from banging on the bars of a crib for years. She lay limp in my arms–struggling to open her eyes.
I thought my heart was prepared.
But I was wrong.
Nothing could have prepared me for the child who lay in my arms.
Adult tranquilizing medication given for the sole purpose making her sleep her life away had left the little four year old unable to function.
It ripped my heart out.
That was then! In the three years that Hailee has been home, she has astounded us. Those first few months? They were hard! She rocked, self-soothed, banged her head on anything she could find, cried inconsolably, chewed her fingers until they bled, ground her teeth constantly, and dealt with the horrendous side effects of being weaned off of strong medications for a long time.
God, in all His grace and mercy, was so kind to our daughter. Slowly but surely we began to see beauty rise for those awful ashes.
For the past three years we have watched in amazement as Hailee has grown, developed, and discovered her own, very unique, little personality.
And what a personality she has! Friends and family know Hailee as the Tiny Tornado, or “Little Hulk,” as a friend’s son named her. She’s as tough as nails and will gladly accept any invitation to wrestle on the ground. Hailee never (ever!) stops moving. She’s always on the go–looking for the next toy to throw as far as the east is from the west. Girl’s got crazy strength!
But the most amazing thing to us is her affection. Hailee loves, loves, loves to be cuddled. She’ll wrap herself around any willing person’s neck koala-style and never let go. She has transitioned from a child who could not tolerate the faintest of touch to a little love bug. We love it! And she’s so smart. As soon as she hears the garage door open at the end of the day, she’ll climb down the stairs to the mudroom to meet her Daddy as he comes through the door. She knows that Daddy coming home means play time! So adorable.
We have known for a long time that Hailee is on the autism spectrum. But we have also known in our hearts that the feisty, spunky personality goes beyond autism and Down syndrome. Her therapists have been strongly advising me for a very long time about getting her diagnosed, and urged Anthony and I to seriously consider the possibility of using medication to help Hailee concentrate and get more out of her therapy sessions. Right now they have to do therapy in her high chair because keeping her in one place is completely impossible. Being very sensory seeking (Sensory Processing Disorder), she has to constantly be banging, listening to loud sounds and music toys, and finding things to get into.
Oh my goodness! I vacillated for two years. Medication? Being extremely conservation on any medication, my heart and my head struggled to reconcile what was the right thing for our precious little bundle of spunkiness. I heard where the therapists and doctors were coming from and understand the need for Hailee to be able to focus enough to learn, grow, and gain some kind of communication skills (she is completely non-verbal). That’s the goal.
But the thought of medicating her again…oh my!
Reluctantly, but knowing that we need to do what is absolutely right for Hailee, last week we officially had Hailee diagnosed with ADHD. No surprises there. I like her doctor very much and trust him completely. I listened as he spoke a lot about Hailee’s behaviors and ADHD with autism, SPD, and Down syndrome in the mix. It’s complex. We spoke about the fact that she has zero fear and the dangers of that, and many other issues. I sorta kinda agreed that, perhaps, taking the edge off of her rambunctious behavior is probably they way to go. BUT…just the edge off–enough to get her to be able to sit and focus and learn.
We needed her to still be our Hailee–big personality and all.
So Hailee and I came home after our appointment, sample medication in hand. Friday night we gave her the first of an extremely low dose. She went straight to bed and all was well. Saturday morning she got the next low dose. Within the hour, Hailee got that glazed over, drugged look on her face. She struggled to walk and was just not herself. I could not stop the tears. Looking at my sweet, beautiful girl took me back three years–to where we began our journey. She looked drugged. She acted drugged. I hated it. Anthony walked in the door later that afternoon, took one look at his angel and said, “No, Honey! We’re not doing this!” Our big kids were so distraught. “Mom, this isn’t Hailee. Please don’t do this!” they pleaded.
It was beyond awful! We counted the hours before the medication would leave her system. It took 24 hours.
And so here we are, back at square one. The whole experience has left Anthony and me questioning, seeking and praying about the right thing for Hailee. We just don’t know. I know that there are many options and medications which are successfully used on children just like our little treasure. And I know that many kids do great. But the whole nightmare last weekend has left me afraid to even try again. Seeing my gregarious little darling completely lose her personality broke my heart.
I know that many of you have journeyed this road. I know that we are not alone in raising a child with many diagnoses. I would love to hear what has worked for your child. Natural remedies? A milder medication? Any advice would be greatly appreciated. This is so new to us–we’re learning as we go. I would love to glean from those of you who have been there, done that.
Of one thing I am certain today! He who holds Hailee in the palm of His hand and has never, ever let her go and has this one too. I know that we will eventually have absolute peace and clarity on what to do and how to do it. Getting to that point is all part of the journey of faith.