I wish I could go back in time to warn my twenty-five-year-old self to get ready for the ride of her life. My autism journey started with infertility and unsuccessful IVF. I mistakenly believed it was my fault that I could no longer have children and that I was being punished for my sins and mistakes. I grieved the loss of never being able to conceive again. My oldest son, Brian, was 7 years old at the time. Little did I know the gifts that awaited me.
When Brian started 8th grade, and I settled into the reality of our family being complete, and we moved an hour away from Pennsylvania to New Jersey. I remember walking up the steps in our new home when the idea of adoption hit me so hard, it stopped me dead in my tracks. I turned around and walked into the kitchen. Without a second thought, I said to Brian and my husband Scott, “We are going to adopt.” They both looked shocked and confused at my comment that seemed to come from nowhere.
I proceeded with researching the steps needed for adoption and shared my findings with them. Finally, with my guys completely on board, we went through the necessary steps to be put on the waitlist to be matched with a birth family. About six months later, we received a call about a little boy born with several special needs and medical conditions. After we hung up the phone, Scott and I just stared at each other. We had never considered a child with disabilities, but that day our eyes and minds were opened to possibly bringing a child with special needs into our family.
A couple of months later, we were matched with our children’s birth mother. In July 2005, our daughter Emily was born. Brian was fifteen then, so it was like having a first child all over again! Emily was a beautiful, healthy girl thriving in all ways. But at six months, we noticed she was not meeting critical milestones like sitting up on her own, crawling, engaging with others, or even making eye contact. My maternal instinct told me something wasn’t right, but everyone, including our doctor, assured me she was fine.
Nine months later, not much had changed with Emily’s development, so we decided to seek out and began the medical journey to figure out what was happening with our precious girl. A family friend managed to secure an appointment with the head of Neurology at A.I. DuPont Children’s Hospital (now called Nemours) within a week. This was unheard of – usually, these appointments could take up to a year. We were so very thankful to God.
As we prepared for our appointment, I didn’t have any preconceived ideas of what was going on, and I didn’t know about autism back then. I just knew something was going on with my daughter and I needed answers. That amazing doctor was a blessing to our family for almost twelve years. He called Emily his Mystery Girl and believed something “misfired” in utero. She was diagnosed with Autism and Global Developmental Delays at eighteen months, and we began Early Intervention then. Right before Emily turned three, we received another call from the adoption agency. Emily’s biological mother was pregnant with a boy. In May 2008 we welcomed Scottie and our family was complete.
Emily got around just fine with a mean log roll. We waited and waited for her to walk. It was tough as the years went by, but I knew she could do it! She finally thrilled us by taking her first steps shortly after she turned four. Potty training came when she was almost eight. Emily had very limited language skills, and an Epilepsy diagnosis followed at age ten.
That year I remember sitting in the driveway doing sidewalk chalk. I looked around our neighborhood at the kids close to her age who were doing typical activities like riding bikes, playing tag, or just running around. My eyes rested on Emily – would she ever do these things? Would she ever have friends? What would her future look like?
At that moment, the grief was so overwhelming. I desperately tried to push those feelings aside, but I couldn’t. I had to grieve the loss of the childhood I had pictured for her so that I could start to fully embrace the person she is. I needed to fully celebrate those milestones that could seem so very small to others but were huge for her. I became completely open to all the ways I believed that Emily would inspire everyone around her. If I had not done that, bitterness could have taken a stronghold in my mind and heart. That shift was a great gift to both me and Emily that day and I believe it altered the course of our lives. I wouldn’t change her for the world…well, except for the severe behavior side to her autism, which I’ll get to shortly.
We have always been incredibly blessed with the home support of specialists who work with Emily. Our home has been an open door for all services needed to help Emily grow and learn, and I am like a sponge soaking in everything I’ve been taught. From the start of her therapy, Emily has thrived in an Applied Behavior Analysis (ABA) setting and repetition of skills for mastery. Her current academics consist of Activities of Daily Living (ADL) to increase her independence in areas such as dressing, bathing, chores, etc.
Her team is incredible. When the days are hard and I feel defeated, I pick myself back up to try again, as all of these amazing professionals do every day for Emily and other children like her. We consider them family, and without them, I don’t know what we would do.
As Emily grows, so do her strength and dangerous behaviors. She has aggressive and self-injurious behaviors, as well as property destruction. Our behavior support staff work very hard to create programs to help keep these types of behaviors low. A few years ago, I found the Kennedy Krieger Institute (KKI) in Baltimore, one of the top behavior institutes in the country. When we took Emily for an intake evaluation, she demonstrated significant behaviors as we entered the building and needed assistance from the Institute’s security. Amazingly, this was the first time that I felt zero judgment from others. I immediately knew that we were in the right place. I never felt such peace. I felt like a weight was lifted and I had finally found the help I needed.
By the grace of God, Emily was accepted into the inpatient program, however, the waitlist was up to twelve months. We spent the next year keeping Emily and those around her as safe as possible. It was a hard time as Emily exhibited significant behaviors that included violence. It felt like our support team moved into our home. Our focus was just on staying safe until we could get Emily the help she needed.
On March 12, 2020, we received the call to have Emily at the institute by noon the next day for her four-month inpatient stay. I scrambled as our family was sent into utter chaos preparing to get Emily down to Baltimore. This was three days before the COVID-19 lockdowns began, which I know was God’s divine intervention. After everything we had been through over that year, I can’t imagine what life would have looked like if she remained home without any services due to the COVID-19 restrictions.
Emily was discharged from KKI on June 9, 2020, with a completely new behavior program that we all had to be trained on. Despite the continued pandemic restrictions, her behavior support team helped us run this new program from our home while also assisting with remote learning due to the pandemic.
As I reflect on God’s hand moving throughout our story, I know I can trust His timing. This last year has been full of highs and lows as we continue to adjust to Emily’s changing behaviors while continuing to utilize the program from KKI. The world is changing due to the pandemic and is much different from when Emily entered her program. We are realizing that as Emily is maturing, additional modifications may still be needed, and possibly another visit to KKI. We’re continuing to trust in God, lean on our amazing church and community, and work with Emily’s outstanding behavior support team as we continue our journey.
Emily Inspires…
I am Emily’s voice in this world for change. She inspires me with each step, and I look around for each blessing in our life, no matter how seemingly small or insignificant. She’s changing our community. I am the special needs coordinator at Crossbridge Community Church, and when asked what my mission was for this ministry, I answered simply to find another family like mine. Through Night to Shine, a prom for individuals with special needs fourteen and older, sponsored by the Tim Tebow Foundation, we have done just that. Our vision is to guide and encourage with God’s love the ripple of acceptance and inclusion that began in our Crossbridge Community to spread through and beyond Night to Shine. And it has! I have said that Night to Shine has a heartbeat of its own! The ripple in our community has been much greater than we ever imagined! All of this because of our Emily!
And that conversation with 25-year-old Jeanine? I would also share John 9:5 with her:
Neither this man nor his parents sinned,” said Jesus, “but this so that the work of God might be displayed in his life.
Amen.
JEANINE’S PRAYER:
Dear Lord, I thank you for always showing me you are always here with us.. I pray for all those families out there like mine that they can see your light in their darkest days. I pray that this is an encouragement to them to keep going and know that they are not alone. It’s in Your Name I pray…Amen
~Jeanine Robbins
When he outgrew cute
The looks changed from compassion to concerned
Towards him
And towards those who supported him.
And sometimes disgust
Overshadowed concern
As he stubbornly clung to his ways.
When he outgrew cute
The calls increased
Calls desperate for help
Desperate for summer options for a 16-year-old in diapers
Desperate for respite
Desperate for adaptive equipment
Desperate for anything that would assist a non-verbal teenager
Or anyone
And the voices were silent
Or the whispered-
Sorry.
Sorry.
Sorry.
When he outgrew cute
His movements were no longer celebrated
But instead feared
Violent head banging
Aggressive pulling
Dangerous optimism
With the strength of a man
And not that of a child.
When he outgrew cute
The damage began
Damage to walls
Damage to others
And damage to himself
And this damage
Wreaked havoc on more than just objects
It wreaked havoc on psyches as well.
When he outgrew cute
The walls caved in
And the house became a tomb
And the isolation suffocated those within
As they desperately yearned to belong
To something
Somewhere.
When he outgrew cute
Milestones were no longer encouraged
And his future grew dim
And symptoms of PTSD set in
For those who loved him & had been
Rattled by his screams for years.
When he outgrew cute
Mood altering drugs were doled out like candy
One option after another
For him
And also
suggested for his caregivers.
Drugs to dull the pain
Drugs to pacify
Drugs to silence the demons
When he outgrew cute
She outgrew herself
As every ounce of strength was poured into him
And she got lost in the daily grind
Lost in the sleepless nights
And invisible behind the never ending tasks
When he outgrew cute
She outgrew silence
And she raised her voice
To join the cacophony for change
And her battle cry rose –
A better tomorrow! For him
And for those who loved him.
Because when he outgrew cute
He outgrew society
And that’s simply not an option.
For anyone.
Anymore.
When he outgrew cute
She found the strength to move forward
To move towards advocacy
And move towards hope.
She found the strength
To keep going
And keep growing
And she found the strength
To just keep living.
-From the Facebook page “Jessplusthemess”
My “Moms Night In” conversation with Jeanine:
Or watch on Facebook here:
Faith-Filled Moms 