The Unsung Heroes

I have had the unique opportunity to connect with people who are curious and concerned about autism, usually in terms of a loved one. I always make time for these calls, texts, and emails. The ones that I seem to get the most and those that really touch my heart are the calls that come from grandparents. They’ve noticed the differences in their grandchildren, and have been worrying for some time. They gently try to encourage their children to seek another opinion when all too often the general pediatrician dismisses the raised concerns. Parents are reassured with such comments as “all children develop at their own pace” “boys are slower than girls” and “let’s wait until they’re older to jump to any conclusions”. (I could write a whole post about physicians and their very flawed “wait and see” logic but I’ll save that for another day). And more often than not, the parents of the child of concern are in a very common place of denial, retreating from the fear that something really could be “wrong” with their child. This usually delays intervention and painfully strains relationships mainly between mothers and daughters. The story I’ve heard time and time again has been, that if the grandparent continues to push them for help or point out what they see, they will lose contact with their grandchildren. I get it. I really do. I understand that as a parent we want to believe that our children are perfect, that others jump to conclusions and that we know our children best. Yet, I’ve also learned that it’s a very vulnerable, frightening place to be to accept that my little one is potentially telling me something, even though I’m not prepared to hear or see it. And even though I’m not a grandparent, I can also see and hear the pain that they feel watching their child struggle to see a situation clearly without defensiveness. The helplessness and distance that they experience are so heartbreaking and yet their love for their children and grandchildren is so strong that they will continue to push even though it could mean that they may damage their relationship.

 

And so today, for Mother’s Day, I recognize and acknowledge the unsung heroes, the grandparents in our life who have weathered this storm with us, with grace, love, patience and understanding. Because there was the day that I was in denial and angry at the assumption that something was wrong with my baby, yet our parents walked with us as we waded our way through the dark waters of the diagnosis and continue to hold us up on our journey.

 

When Mark was born we were living with my parents because we had sold our house shortly before I found out that we were pregnant. And when we brought Mark home from the hospital, I settled into days of my maternity leave where I would visit with my mom on breaks as she worked from home. I would swing him on the back porch and she would come out and chat with me. As the weeks went by, Mom began to notice the differences. Mom would comment on his lack of eye contact, staring at the ceiling fan and unresponsiveness to us. And I would shrug it off, knowing deep down that something was wrong and yet not being nearly as ready to face it. I look back at the beginning and I see that my mom wasn’t ready to face it either but she was concerned, worried, and prepared to put her own feelings aside to get him help. She’s my mother and his grandmother, and she was far more equipped than me.

 

 

Fast forward a year later and the signs of autism, if they weren’t obvious before, became painfully clear. We had moved into the house we built and when we visited my family on Sundays, we would come in the door and Mom would greet the kids excitedly. When Mark wouldn’t react or flinch, I could see the concern reflected on her face, the concern I felt and buried deep inside. I’ve always struggled to outwardly express my emotions and I felt overwhelmed to see my feelings on her face. Even at that point, I was still grasping at straws trying to find other diagnoses that fit him. I even went as far as to take him to a specialist at the University of Maryland because I was convinced that he had a vestibular disorder of his inner ear. It wasn’t autism, he just needed surgery to correct the imbalance and it would stop the spinning, and all would be well. There were many of these rabbit trails my family watched me go down in an effort to explain away something that terrified me.

 

Once Mark received his diagnosis, the denial had waned, and it was replaced with aggressive action. If I couldn’t avoid it, I needed to fight it. I quickly signed Mark up for an intensive speech program. My mom used her leave time to go with me several days per week to have Mark be seen at Kennedy Krieger for intervention by a speech pathologist. She sat on the floor with me as we tried to engage Mark in the speech exercises while we watched him retreat to corners of the room to spin in circles. It was hard to watch and I know it broke my mom’s heart just as much as it broke mine.

 

A couple months later, when my aunt offered us the opportunity to go to California for an experimental round of brain treatments, without hesitation, I jumped at it. My parents drove us to the airport, and stood with me, two years ago on Mother’s Day, as we watched Ike helplessly board a flight with Mark who had just turned two the week prior. As we ate at Panera that night to celebrate Mother’s Day, I was on edge and nervous and I could tell that my parents felt similarly, but they were brave for me, and for Jillian. We hoped that this brain treatment would “fix” him and that he would come back, recognize our faces and give us the hugs that we had longed for, and yet that’s not what happened. Once again, my parents took Jillian and me to the airport and we waited for Ike and Mark at the gate, and my aloof little man looked all around but not at us. Again, I could see and feel my feelings coming from my parents.

 

 

A few months later, Mark started a program that would require me to drive him an hour and a half away four days per week. Once again, I jumped at the chance, signed him up and determined that I would figure out the logistics later. And we did. My Dad adjusted his schedule at work, working four ten hour shifts and using his day off to drive Mark down the road. Ike and I took our turns, and we even called upon my sister and her boyfriend. As time went on, my in-laws took time off from their jobs to drive him. We were determined to get him there and our village stood behind us.

 

 

And after Ike began his new job, and had no leave time accumulated, my mom would take off work just to drive with me to far away appointments, those that would involve wrangling a screaming child as I strained to hear what the doctors were saying while navigating congested cities and traffic. This was even in the midst of her cancer diagnosis, surgery, and treatment.

 

 

My mother in law eventually retired and became Mark’s caretaker during the day while we worked. Both my father in law, Mark, and Becky would take him to school several days per week, and still do, driving him to KKI, as well as his other therapy appointments. And over the past year, Mark has become quite the handful, screaming for reasons we can’t understand accompanied with messy bowel movements multiple times per day. Becky would wrestle him on changing tables that were exceedingly too small and in the front seat of our small sedan that we used to drive him to school, a feat I still can’t wrap my head around. She has a remarkable ability to roll with the strange punches and that has blessed our family in so many ways. Yet I know that it wears on her, much like me, to deal with the screaming that we’ve been experiencing as he struggles to acclimate to new places, new faces, and new things.

 

 

On the few rare occasions where Ike has been gone overnight, and Mark seems to know, and not sleep, Becky has come over early in the morning so that I could shower and put myself together for work. And the day he broke his arm she sat with me while he wailed in my arms waiting for the x-rays that would make him wail even more. On the morning of one of Mark’s ear surgeries, Grandpa Mark came to wait with us. They weathered that storm with us, ahead of many to come, just like my parents.

 

 

I call my Mom most every day and ramble on about whatever drama that particular day holds. Screaming fits before bedtime, poor transition to a new therapist, push back from the school system, frustration over foods, health insurance battles, and this week when a parent made a snide remark about Mark’s tantrum behavior, she felt the same intense rage and hurt I did as I struggled to defend my little boy who was confused and in a new classroom for the first time.

 

There are countless stories. My parents and Ike’s parents have been stretched, molded and bonded to this little boy in ways that I couldn’t have ever imagined. Mark knows how important they are too. He lights up when he sees them, eyes sparkling and arms wide open. All four of our parents support us in such beautiful, unique ways. Their selflessness is something that is born from the love of a parent and transformed into that of a grandparent of a special needs child. I know it must be hard to watch us struggle and not be able to tell us confidently that it will be ok. And I know that it’s even more difficult to watch Mark struggle through the everyday things that come easily to most children. Yet just as the lows can be quite low, the highs are remarkable. The next best thing to watching Mark do something new for the very first time is sharing it with our parents. There is no joy like hearing them beam with the same joy that we do when Mark rode his tricycle for the first time or recognized himself in a photograph. So this Mother’s Day, I give thanks to our mothers and fathers who raised us and who are now holding the ropes as we raise their grandchildren.