Friday, December 23, 2011
Find My Family Friday - Igor
Last month I told you that I was working on an interview with a mom who adopted a little boy who reminds me in many ways of Igor (you can read more about Igor here, here, here, here and here). Today, I am happy to introduce you to Shelley, mama of 7 including four children with special needs adopted from Eastern Europe. One of Shelley’s children, Xander, is diagnosed with Autism and exhibits many behaviours similar to those I have seen with Igor. I want to make a couple of things clear though… First and foremost, every child is unique. Second, Igor has not been diagnosed with Autism and while he does exhibit autistic behaviours, these could be symptoms of an undiagnosed genetic condition and not a result of Autism at all. Xander and Igor are without a doubt different in many ways however I also see many similarities between them. That said, I thought it would be interesting to hear from a mother who is parenting a child with similar challenges as Igor. So, without further delay, allow me to introduce you to Shelley and her incredible son, Xander…
Could you briefly introduce yourself and your family?
My name is Shelley. My husband, Robert, and I currently have 7 kids. Three of our children are “home grown”: Jakob is 12, Olivia is 9 and Zoie is 6. Our other 4 children were adopted from Eastern Europe. Xander is 8 years old and was adopted from a baby house orphanage in Ukraine in August 2007. He has Down syndrome, Autism and bilateral clubbed feet that were repaired post-adoption. Grifyn is 8 years old and was adopted from an orphanage in Serbia in April 2008. He has Down syndrome. Kullen is 9 years old and was adopted from a mental institution in Bulgaria in April 2010. He has Down syndrome. Annikah is our newest addition. She is 6 years old and arrived home on December 3, 2011. Annikah also has Down syndrome.
What information were you given and what did you know about Xander before you met/adopted him?
We first heard about Xander on Christmas Eve 2006. We knew that he was 3 years old and that he had Down syndrome and unrepaired clubbed feet. We knew that he was in a baby house in Ukraine and that he was due to be transferred to a mental institution in August 2007.
How did you know that Xander was meant to be a part of your family?
With Xander, I just knew. It’s hard to explain. I looked at his photo (we’d been sent photos of several children at the same time) and it was as if God whispered in my ear, “That is your son.” That was it. There was no convincing me otherwise. He was meant to be our son. My husband and I talked about it for days (he was interested in a different child). But, the feeling inside of me was so strong that Xander was “the one” and my husband finally said that if I was that convicted about it, then clearly we were supposed to choose Xander.
What were your greatest fears/concerns about making Xander a part of your family?
At the time, we were very worried about his feet. That’s almost comical to think about now. But at the time, it was true. We were WAY more worried about what it was going to require to get his feet fixed (surgeries, therapy, etc) than we were about any of the issues involving his cognitive impairments or behavior.
What are some of the greatest challenges you have faced with Xander?
Without a doubt, it has been his behavior and the Autism diagnosis. Xander has a lot of sensory issues. He has a lot of auto-aggression (harming himself). It has changed the way we parent and just how we think about life overall. Trying to figure out what motivates him, what “sets him off” and what works to help him make progress has been an ongoing theme in our family.
I know that Xander struggles with self-harming behaviours, what effect has that had on everyday life in your family and what have you done (therapies, medication, etc.) to help manage those behaviours?
Xander has gone through cycles with his behavior. We’ve tried a variety of techniques, therapies and interventions to help him over the years. We’ve learned that it’s very important that we address his sensory needs and that we give him tools to deal with his frustrations so that he doesn’t resort to the auto-aggression. Over the years, Xander has received Occupational Therapy (with a focus on sensory processing), speech therapy (with a focus on gaining communication skills to express his wants/needs/frustrations in some way other than harming himself), physical therapy and hippotherapy (horse riding therapy). He responds well to deep pressure touch, so we’ve also used brushing therapy. We focused on his sensory needs….what he really likes/what calms him, what he seems to have an excess sensory need for and what sensory things cause a negative reaction. We created a “sensory diet” for him, where we were able to “feed” the things that helped to calm him and to also better control (and if possible, eliminate) the things that caused a negative reaction. We also use “first/then” speech with him and a lot of sign language and visual cues when communicating with him to relieve frustration. Xander now has a “sensory room” in our house that we’re still “building” based on his sensory needs and preferences. In August 2011, Xander started taking a prescription medication to help with the auto-aggression. It’s currently working well at controlling this behavior and as a result, we’re seeing progress in other behavior areas as well. Xander also takes Ginko, which he’s been taking for almost a year now. The Ginko helps with the “normal” stimming behaviors (hand flapping and such) and also seems to help with his desire to communicate. He’s much more verbal while taking the Ginko.
Describe the progress Xander has made in the last four years of being in your family.
Xander came into our family the week of his 4th birthday. He weighed 16 pounds and wore 9-12 month clothes. He drank out of a bottle and could sit up. That was it. He now weighs 50 pounds, walks, says some words (and uses sign language to communicate), feeds himself (and eats everything!) and so much more! He’s learned to make eye contact, he’s very affectionate (toward people that he likes…he’s picky!) and he has the most genuine laugh (that we hear a whole lot more now!).
What are your hopes and dreams for Xander's future?
We continue to work with Xander on self-help skills. I’d love to see his communication skills increase so that he can express himself better. Mostly, I just want him to be able to manage his sensory needs in a way that allows him to function in the world safely and happily.
How have your lives been impacted by the addition of Xander to your family?
We’ve had to learn to look at the world different…at how even the most basic things can impact a person that struggles with sensory issues. It took getting to know Xander’s needs….what he loves, what helps him and what things cause him stress and anxiety. Once we acknowledged those, it wasn’t very difficult to adjust our home and our schedule to help meet those needs. We do have to think through things more in depth. For example, before going somewhere (especially if it’s going to be in a crowd), we have to think about how it might impact Xander, which of his “triggers” may be set off there and what we can do in advance to set him up for success.
If you knew then what you know now, would you still have chosen to adopt Xander?
Quiet honestly, I’m VERY glad that I didn’t know everything then. It would have scared me to death! When I list out all of Xander’s needs, it sounds VERY overwhelming to anyone that’s listening. But, when you’re in the moment, being his mom, it’s not nearly as bad as it sounds. He has some unique challenges and some frustrating behaviors. But, he’s also VERY lovable. He has things that he loves to do and those things bring him such joy. He has THE BEST laugh in the whole world. It’s sweet and sincere. When he giggles, everyone around him can’t help but to smile too. There are days when it’s tough to be Xander’s mom. But, he’s made me a better person and a better mother. He’s taught me that when everyone else says, “He can’t”, “He’ll never”, “You may not ever see progress”, etc that if I really listen to him and what he’s showing me and telling me with his behaviors and his limited communication, I CAN help him and I CAN reach him and he CAN learn and make progress. There are days when Xander is downright exhausting to parent, but I can’t imagine my life without him in it.
What advice or suggestions do you have for any family who might be considering making Igor a part of their family?
It may be the toughest thing you’ve ever done. But, it’s also going to be the most rewarding. You will have the opportunity to watch a child that spends most of his time locked in his own little world literally blossom before your eyes.
So there you have it, some of the challenges and the blessings that lie in store for the family that will be fortunate enough to call Igor their own. If you think that may be you, please don’t let Igor’s behaviours scare you away. More than anything else he is just a sweet little boy who needs to be loved. If you know that God is not calling you to be Igor’s family, would you help his family find him by sharing his story, donating to his grant fund and keeping him in your prayers? For more information or to donate, click here.
Igor is listed as “Brody” on Reece’s Rainbow;
in order to protect his identity, when sharing about him on your own blogs, facebook pages, etc. please use his Reece’s Rainbow name