Sunday, April 15, 2012

Autism x 2: Karen's Caregiver Story

Living in a small town and being at home much of the time leaves me lacking for close friendships. Being the mother of a disabled child makes it even more difficult to find people to relate to. However, I have had the pleasure to meet some wonderful people online since starting my Etsy shop. And best of all, I've found many mothers of children with disabilities.
One of my first online friends was Karen from North Vancouver, BC, Canada. Karen is a doll fanatic! She is a blogger extraordinaire, writing for several blogs devoted to dolls. She also has an Etsy shop where she sells her doll clothes and other items.  I came to know her when she asked to interview me for her blog. She was so kind to do a feature on my shop, which I will shamelessly link here! We kept in touch afterwards, when I learned she was the mother of 3 boys. It turned out our love of dolls wasn't the only thing we had in common. She shared with me that 2 of her sons are autistic.
April is Autism Awareness Month, and I couldn't think of a better story to share than Karen's. It was a thrill for me to turn the tables on her, making her the interview-ee instead of the interview-er. She was so gracious to agree, and here is her story.

Tell me who you care for, and briefly describe their disability.
Well, I am a mom of three boys. My oldest is 11, and I have an 8-year-old and a 4-year-old. Both my 8- and 4-year-old boys have Autism Spectrum Disorder (ASD). My 8-year-old also has had angioplasty, and is doing very well. Both of them have sensory issues and are considered "moderate" in the severity of their disabilities.

What are their limitations?
Limitations are a difficult thing to describe. The boys have issues they are working on. We run an ABA (Applied Behavior Analysis) program at home that really helps us all as a family to communicate and function well. While there are several non-preferred activities and actions that they each have, I prefer to not look at these things as limitations. I prefer to encourage them to overcome roadblocks, and we go on from there. Labeling the limitations seems to give the limitations more power then they need. Instead, we try to target realistic goals and reach them, surpass them, and move on to the next one. 

On a daily basis, what is the most challenging part of caring for them?
As a mother of three boys, I am told there is a special place in Heaven reserved for us! The most challenging part is sending them to school, where I do not have the control or ability to assist them. Putting your faith in others to guide them as you would is the hardest part for me. Okay- that and the lack of sleep. Mine are not great sleepers.

What is the most difficult thing you've ever dealt with in regards to their disability?
Stigma would be the most difficult thing  I have ever had to deal with. As my children do not have visible trait disabilities as other children with special needs do, if we have a problem in public, I am always met with questions and disapproval from others. Other people always believe they have the right answers and love to tell me "your son is too old to behave like that"- or my favorite "Your child really is spoiled, isn't he? You really need to just smack him...". Or when I let them know he has Autism, they always offer their unsolicited advice as to how I can "CURE" my child. Even when they are well meaning, it is hard to take.

Do you have your situation under control, or are you struggling with it?
With help and support, we mostly have our situation under control. But I do struggle with it the same way any parent struggles with what is handed to them. I try to take things as they come, pick my battles, and take lots of tea and hot chocolate breaks when I can.  I do not drink alcohol, which is a personal choice, and am always hearing from people that, if they were me, they would "take up drinking". It just doesn't sound like the solution for me.

Do you have a good support system?
I think I do. I have a great husband that I have been married to for 13 years. We met when we were in elementary school, so we have known each other for what seems like forever. I have a great family support network. My sisters, brother, Dad, mother-in-law, father-in-law, and sister-in-law are incredibly supportive and a gift! I have a best friend who, even after working 80 hours a week, comes and spends Friday night just watching TV with me and having dinner.  I do not go out alot socially, and it means so much that people go out of their way to make my life easier.

Has your situation affected other relationships in your life?
Absolutely. I am not normally a person who likes confrontation. Being a parent, especially when you have kids with special needs, means you have to become an advocate for your child's rights and a voice to those who's voice cannot be heard. As for friends, I consider myself lucky to have the supportive friends and family in my life, though my circle is small. It is the quality of my relationships, not the quantity, that matters.

What do you do for enjoyment?
I enjoy crafting, I always have. Recently I have turned my hobby into a business. I have a weekly craft column on dolldiaries.com. I also taught myself to sew doll clothes in October 2010 after my mother died to keep myself busy. I started to sew doll clothes for my 5 nieces' American Girl Dolls. From my sewing and crafting, I began blogging on Christmas Eve 2010 (karenmomofthreescraft.blogspot.com), and have had more than 100,000 visitors since then. I also have three other blogs mymapleleamycountrymydoll.blogspot.com, keepcalmandplaywithdolls.blogspot.com, and an American Girl Mystery Book Club blog called americangirlmysterybookclub.blogspot.com. I collect dolls; I have 4 American Girl dolls, 1 Maplelea doll, 1 Australian Girl doll, 1 My London Girl doll, and 2 Springfield dolls. So I have become a writer, blogger, crafter, and Doll Collector in the last two years.
I also bake obsessively ( I have weekly orders at a law firm). You may find this funny, but I am a huge NASCAR fan. I am Canadian, do not drink or smoke, and I love NASCAR. It is a sport I completely understand and am fascinated by. I find the sights, sounds, and smells of NASCAR to be more calming than spa music or aromatherapy. For our tenth wedding anniversary, my husband took me to Daytona International Speedway in Florida, and I did a hot lap with Richard Petty Driving Experience. I loved it! So much so that for Mothers day the following year, I did a hot lap at the Las Vegas Motor Speedway, and my boys all got to watch! I have been to tracks at Daytona,  Delaware, Las Vegas (twice) and Texas. I saw my first and only live races in Texas, and hope to one day see many more races.  It is the fault of Disney Pixar that I fell in love with racing and something I will be ever so grateful for!

What is your favorite attribute about your sons?
That they are kind and caring, non-aggressive boys. I am so very thankful for that!

What is it about your life as a caregiver that you want others to know?
I would love people to know that it doesn't help anyone when you say "I don't know how you do it!" or "God only gives you what you can handle".  I think that makes them feel better, but doesn't make me feel great. I also hate being called a "Super Mom", as that just puts me on a pedestal I do not deserve. I have good days and not so good days, just like anyone. I yell, have dirty dishes in my sink, the kids rooms are always an organized disaster, and I suffer from C.H.A.O.S (Can't Have Anyone Over Syndrome) despite my best efforts with fly lady, which is a great web site, and one I use as much as I can (flylady.net)
The fact is I do what I can. I get up every morning and put on my "big girl panties" and deal with my life the best way I know how.

How has being a caregiver changed you?
Well, it has helped shape my life in so many ways. I think as an oldest child, I have always been a caregiver. Having kids solidified that. I think I have become more sympathetic to the needs of others regardless of abilities. I think it helps me remove myself from my situation and look at others and marvel at their abilities, despite their own disabilities.  I think it is important to realize that everyone has special needs regardless of diagnosis. No one is so different that they do not respond to human kindness.

Have you learned anything about yourself?
I believe I have. I have learned that it is the connections you make with each and every person that help you become the person you are. I have learned to step back and embrace what others have to offer, take the best of what they have, and mold that into myself and who I am today.

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