Family Team Work: Everyone Has Strengths and Weaknesses

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Many years ago when Emir received a clinically significant score on the ADOS exam (The Autism Diagnostic Observation Schedule), it was suggested that I contact a neurologist but I just didn’t do it. I already knew he had significant sensory issues and was aware of some very obvious characteristics of Autism. But Emir has Down syndrome and we were already doing everything he needed based on his individual needs. A second diagnosis wasn’t going to change or add anything at the time. I dedicated my life to Emir in his first years, so I knew better than anyone his strengths and his weaknesses, and I was also able to see the differences between him and my daughter, who was also born with Down syndrome but whose behavior and interaction with the world was completely different.

I’ve lived more than 14 years of my life raising Emir and I have seen him go through intense emotional crises, experience an inability to connect, and more. It’s hard to believe for those who don’t know him well because most of the time, Emir is a very well-regulated person and has been always so funny and outgoing. His emotional challenges have never been consistent, or perhaps more accurately, I have learned to anticipate them and that has made them more manageable. At this point, I understand that becoming frozen or disconnected in stressful situations is a part of who he is. I do respect that even though it still causes me stress sometimes.

On a more positive note, Emir has also learned to anticipate these situations and to self-regulate effectively most of the time. Many times, he carries his headphone to new places just to be prepared for unexpected noises or stimulus. Having discussions to prepare him for everything to come (as much as possible, of course) has been always very helpful and he is used to this routine. Ayelen has learned along with us. She is our house diva most of the time, but despite being someone who relishes having our full attention, she recognizes situations of stress for Emir. She always intervenes to help when possible. For example, she would lower her volume if that was becoming a problem, and then go to Emir to tell him things like, “You are fine now.” I really admire this bond between siblings that allows them to help one another. Many people who don’t know Ayelen live under the impression that Emir does everything to please her all the time. As for me, I know that she does for him as much as he does for her. She is the sweetest and most compassionate sister ever.

Emir has developed several self-regulation techniques, rocking and spinning are the most common. He has an outdoor and indoor hammock and a spinning chair that he uses all the time. We still deal with the effects of overstimulation at the park which has always been a challenge, but I still won’t give up. I keep bringing him to the park with the intention of helping him self-regulate and learn to stop and take turns when it comes to the swings. He is doing much better compared to previous years, but he still needs help to stop. The other day he had kind of an emotional crisis at the park. He was swinging and when I looked at him I saw in his eyes that he was under stress because there was a long line waiting for his swing. I tried to help him by talking him through preparing to stop and come down off the swing, but it didn’t work. Of course, I get stressed too. It’s a weird stress because I am completely aware of what’s going on and I want to help him, but sometimes I just can’t which overwhelms me with sadness.

Yaya was around when all this happened. And instead of asking him to stop, she held my hand and told me, “Let’s go for a walk. He’s going to be okay.” When we came back Emir was still swinging and wasn’t ready to get off yet, but he did just a couple minutes later and everything went back to normal – back to our very unique “normal”.

I keep thinking about this experience and the emotional comfort that Yaya provided me. Even if I want to pretend that common situations like this one don’t affect our lives, they do and they always will. This is why I always choose to see the positive in these challenges. We are a great team. Many times Emir is the one who helps Yaya, other times Yaya is the one who helps Emir. I am always there for both but can’t count the times they have been there for me when I am dealing with the stressors of life. With one smile they can bring me back to the magic of living and the importance of celebrating our strengths and supporting each other in our weaknesses.

There is no perfect life but there are perfect moments which make it all work. When we are part of a perfectly imperfect family, and this family is your world, it all works.