Updated: Oct 4, 2018
Can you imagine spending a week’s vacation with a family of 13 in one house? I am talking middle aged parents and 7 children ranging in age from 7 to 25 years old. This is what we call the “Saha Virginia Beach vacation” and we do it every year. Up until the last 2 years we had my in-laws aged 75 in the mix too. This is a tradition we have kept alive for the past 12 years and believe it or not it all works. It’s not to say that it has been all smooth sailing but we have always worked out the kinks. It has been a true gift to watch the children grow up and to help nurture the relationships they have.
Every single one of us has special memories in this place. It is where we can take the time to peel off the layers and get intimate in conversations about life. In Virginia Beach we spend hours in the water, on the beach under the hot sun, paddle board/kayak with the dolphins, watch the sunset, run, take an array of photos, shop a little, visit the board walk and simply take the time to: eat, drink and be merry.
I want to share a story with you that will make you understand how 13 of us can live together in harmony in this house. In essence to give you that fly on the wall perspective…Saturday afternoon we arrived at the house. Everyone is already installed on the beach. Kunal heads to the beach with the kids while I unpack and get settled. I like to have everything in its place, make the bed and ensure things are clean. It doesn’t take long until I join in the fun…the kids are splashing in the water as the adults sit on shore discussing the drive. My sister in law, Mitali sneaks out to get some wine and food for the evenings dinner.
All the stars align and we decide that this year we are going to eat healthier. We are health conscious and don’t want to bring home an extra 5lbs. Truth be told I myself have been carrying extra weight and need to shake it off before the next marathon, in October. Therefore, the usually Papa John’s pizza we get the night we arrive is out. Mitali has decided homemade chicken Cesar salad.
While I am sitting on the beach talking to my nieces Kunal is inside with Mitali doing dinner prep. Keyan has been bouncing in and out of the house on his own, indicating he wants to go back in the car. Kunal has been warding him off the whole time and when I come in for dinner Kunal expresses his frustration. We sit down to eat and mid- dinner Keyan is outside again. Of course, we are frustrated because we want to sit down with the family to eat. It doesn’t take long before things escalate. We try desperately to tell Keyan that it’s not time to go for a drive because we are eating. Makes no sense to him because he has already eaten. We try to get him to sit down and wait a few minutes until we are finished our meals. He doesn’t want to sit. His body language clearly indicates he wants to leave the house. It’s the classic battle between us and him. We try to explain our point but his internal compass is stronger. Us telling him what to do doesn’t feel good and most of us can relate.
The chase is on, Keyan is running around the house banging on walls and windows. He is screaming in a baritone then soprano voice. His eyes glaze over in a state of hate in compassion all at once. He wants me to give him what he is asking for so he lunges at me but never touching me. Instead Keyan makes a fist and delivers blow after blow to his own hip. That has always been his non-verbal way of telling us he is made. Of course, all we want to do is make it stop. The family is finishing up their meals and clearing the table. My thoughts are (remember this if ever you are in the situation) to keep everyone safe. I don’t want Keyan to push one of my little nieces or grab at my in-laws. It is not a pretty site to watch a 5’10” and 150lbs human being tantrum. It is very scary if you don’t know how the person is going to react. This last for a few minutes… Kunal and I chasing trying to control Keyan’s banging and yelling. The family knows enough to give us space and slowly they exit the room. It makes me sad that they have to do that but I am relieved. Them leaving the room means I can focus more on Keyan and worry less about their physical safety.
Together we decide we have to give in and take Keyan for a car ride and not to spoil him but because there is nothing else that will change his state of mind. He has exhausted himself and us too. We feel defeated. He has won. Worse though is our family having to experience this episode.
Kunal, Keyan and I hop in the car and go. Within minutes he calms down. Tears stream down my face. This is the part of autism that is extremely hard for me. I hate when others see how out of control Keyan can get and how scary that looks. Why can’t we make Keyan understand that we can’t live our lives according to his whims. I wished my son understood the concept of others. I am embarrassed, I am hurt and utterly defeated. This is the one part of autism I can’t control – outbursts. Then again he has the right to feel the way he feels. It’s a constant see-saw of ups and downs – both for him and us.
My thoughts are swirling. My EGO tells me to be embarrassed. The mama bear within is telling me that we did our best; first we tried to reason with Keyan, then we worked to calm him and finally we had to appease him (give in).
Kunal being the loving husband apologies profusely for allowing things to escalate. He is taking the blame for Keyan, although it is not his to own. We keep the discussion surface level trying to rationalize what happened. We remind ourselves that people with autism love structure and predictability. We reach the following conclusion, Keyan is upset about missing out on the usual car ride to pick up Papa John’s pizza. That small gesture indicates to his brain that things are no per usual and that feeling is unsettling to him. Of course, there is no way we will ever know for sure but Kunal and I must constantly decode things for Keyan and ourselves (to help prevent such a crisis in the future).
On our little drive Kunal works hard to understand my tears. He asks open ended questions in an attempt to get me to talk. Part of me wants to engage but I can’t. If I open my mouth I fear cracking open – losing it. I keep quiet to stay safe in my head. My heart is broken.
When we get back to the house I am emotionally exhausted so I retreat to my room and get ready for bed. I bring Keyan along to settle him in for the night. I don’t have the energy to face the family. I am feeling an array of emotions. The only thing I ask of Kunal is to explain to the family why we believe Keyan had a meltdown. We need to be his voice. It is of utmost importance that everyone in Keyan’s life understand him as much a possible.
I tell myself tomorrow is a new day. I wake up and the first thing I am compelled to do is to explain to my young nieces what happened. To explain that although a meltdown looks scary Keyan never ever touched either his papa or mama. Then to give them the best analogy about as to why Keyan had a meltdown in the first place – I explain that he was expecting a car ride to pick up the Papa John’s pizza and that is equivalent to mama coming on vacation only to be told she cannot have her daily coffee or he glass of wine with dinner. It makes them laugh. Which is what I am looking for. I want to educate them regardless of the level of unrest it brings me. I walk away from the table and my husband gently pulls me aside to give me words of encouragement. He knows it breaks me to have those conversations but acknowledges the courage it takes.
In that moment there is a part of me that is reminded that when I leave this earth these will be the people taking care of Keyan – or at least I hope so.
p.s. Upon editing this piece Manisha reminds me on that day we can add a FULL moon and missed medication to the equation. Keyan just like his mama bear reacts to the moon ;)