Autism Abroad: the Nielsen Family

Meet the courageous Nielsen family who (literally) travelled across the world to help their son with Autism Spectrum Disorder create an independent and full life.

The Nielsen family is composed of Father/Blogger Aaron, Mother Shaunta, oldest son Donovan, middle son Keagan and youngest song Makhi. Currently their two oldest live in Canada with family members, while Makhi is abroad with Aaron and Shaunta. As parents, their ultimate goal is to make a positive difference in all their son’s lives. 

Their stories are showcased through their personal blog, AutismAbroad.net, but they have written a summary of their journey just for the Entrust Blog.

 
In  December 2009 at the age of 2 our son Makhi was diagnosed with Autism Spectrum Disorder and Sensory Integration Disorder (Sensory Processing Disorder). We were told that he may never be able to talk or communicate with us. That he would live in his own world for the rest of his life. He would always wear diapers. The list goes on....

We tried speech therapy, behaviour therapy and occupational therapy. We tried a couple of different Applied Behaviour Analysis (ABA) therapies for a few years. And things were looking good. He was responding to therapy. But once Makhi started school, it all changed. It was like he was bored. He slowly started to regress. The teachers would say Makhi is doing well, yet when he got home each day from school it was a struggle to get him to anything, and then to go back the following day was also difficult. We could not watch him struggle anymore. A life change was needed.

When we left Canada we had no idea what this adventure would be like. We as a family had never ever travelled. We never vacationed. It was just too difficult. Always worried about being discriminated or humiliated; not by Makhi but by other people. People are cruel when they don’t understand. We hoped and prayed that it would go well and that Makhi would be ok. The airports where horrible. The lights. The People. So many people. The sounds. So loud. But when we were just sitting around waiting, especially if there was an elevator or automatic doors, Makhi was happy. He loves those doors. It got harder to control Makhi during the baggage check and when dealing with customs/airport workers. Some understood our difficult time with Makhi and others didn’t care or show compassion at all. When we were boarding Makhi was fine. Seating was good. And as the plane got ready to take off, I crossed my fingers and prayed Makhi would be okay. And he was super awesome. He was calm on all the flights. Flying was our biggest worry and it turned out to be the easiest part. He was so good. He even took a couple of bites of a different cookie he had never tried - he didn’t even notice! We believe that the air pressure of the plane helped pressurize his body and helped him to stay calm. He was so good.

Arriving in Ecuador we felt the difference in Makhi right a way. He wasn’t as hyper. Then as the days turned into weeks, Makhi started to converse more, not just script words or sounds from TV. We were getting tiny conversations. Makhi will just ask us questions now. It’s awesome. And sometimes when he is clear, and everything is lining up for Makhi, you can have some serious talks with him. He has talked to me about his old school, his brothers, and his friends. My heart melts each time I get to see the clarity in his eyes. As time passes, we are having more and longer conversations. Playing has also improved. Before Makhi would mimic play everything. He would take his toys and act or copy a show. Now I see him playing and using his own ideas. When he lets me play toys with him I give him no choice but to change things up. Makhi used to line his toys up as well, but I haven’t seen him do that in a couple of months. He has taught himself how to swim and dive underwater. He loves the ocean. The waves. He could play in them for hours. 

Socially we still struggle with Makhi. We are looking into children’s programs, but where we are in Ecuador there isn’t much offered for Makhi in English. However, we have noticed that his social skills are slowly getting better. We only have our one son Makhi with us, for now. Anything is possible in the future! School work is coming along. We have never tried homeschooling before but we have found that working at Makhi’s pace has helped to make him learn better. He currently does school work 2 hours a day. Our main subjects are Math, English, Art and some Science. Once he has a good hold of those we will add more. Makhi has also started to want independence. He is trying to clean himself after using the washroom and is trying to wash himself in the shower. All things that he never wanted or tried to do before. Going out shopping and getting groceries has become easier (sometimes).  If we remain calm and relaxed then it usually goes good. But if we get even a little frustrated Makhi will feel that and the fun is over. We have not tried any “tourist” stuff yet as we wanted to make sure Makhi would be interested. We have now mentioned a few different things and are waiting for his response as to what he wants to do.  

Our biggest struggle we have faced has been the Canadian Dollar. Everything is in US Dollars in Ecuador. And with the Canadian Dollar being so low, it has cost us a lot. We planned on being able to work with Makhi for up to 2 years without needing to work. After selling our house we had set aside enough money to do that, but because of the low dollar we have had to spend more than expected. We have started a www.gofundme.com/autismabroad campaign, and for those that wish to donate, it is greatly appreciated.  

With that, I would like to leave readers with two quotes: 

"Acceptance is not difficult. Just open your eyes and see the beauty of different" - Aaron Nielsen

"When a child has autism, a family has the autism. Normal family life fades into oblivion of endless nights trying anything to comfort a shrieking child. Also, the days are exhausting, employing every ‘teachable moment’ to impart knowledge not intrinsically understood and to absorb skills. So, everything is a hurdle to be surmounted.” - Unknown