Friday, August 15, 2014

Special Needs Spotlight || Kelly and Bob



My intro: Hi, I'm Kelly. I'm 33 years old and Autistic with SPD.  My son is also Autistic with SPD and Childhood Apraxia of Speech. He is almost 5.  I'm mixed, Caribbean and French Canadian, and my hubby is Canadian of Austrian and Irish heritage. So our son is one-quarter black, which is why I called my blog OneQuarterMama.ca. I tend to be very political in my writing, searching for equality in the world, but I mostly write about being Autistic.

Hubby and I both work in the tech industry full time. Our son attends a special school just for Autistics. I also have a Twitter, YouTube channel and Facebook page.

Also, one important note, I use Identity-First Language all the time. I am Autistic. We are a culture of people with different brains. Just like the Deaf are a culture of non-hearing people. For more on this, see ASAN's stance on the matter: http://autisticadvocacy.org/identity-first-language/(I’m not sure if Kelly meant for this to be in the actual interview or not, but I left it in because I think it’s such an important part of the conversation and so we could all educate ourselves on the matter a little more.  For some people you may think this is just "semantics" or perhaps she is being picky or sensitive.  However I think we can all recognize that whether it’s race, religion, disability, sports, or profession using the proper language within a culture is important.  In the interview I refer to Kelly as “a person with autism” she would prefer me and others to refer to her as “an autistic person.”  (Is that right Kelly?) However, I did not change any of my wording in the interview below, for authenticity’s sake and so that everyone else can hopefully learn from my missteps in the interview.  She gives me another tip/correction later on as well.  Thank you Kelly for the gracious corrections!)  

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Miggy:  Hi Kelly!  That you so much for reaching out and participating in today's spotlight.  You are the first mother I've interviewed who has a child with autism (including sensory processing disorder and apraxia of speech) AND who has autism yourself.  So lets start with you.  I'd love to hear about your childhood--at what age did you recognize your autism and what was school like for you growing up?  I know for many of us parents of a child with disabilities, school and the accompanying social aspect, is a big concern.  

Kelly:  I didn't have my ASD and SPD diagnosis until adulthood, last year, so I've gone through the majority of my life just thinking there was something wrong with me. Elementary was socially tough, but by the time I got to high school, I accepted and embraced my “weirdness."  Rather than fighting it, I made use of it by becoming class clown.  However, I still did not understand why I struggled to do certain things other people took for granted.  The structure of elementary and high school suited me well, but I completely floundered my first semesters of CEGEP (college prep) and university without structure.  I was, however, consistently on either the honor or scholar roll. So that studious, nerdy, quiet girl?  Probably Autistic. We don't argue, we are extremely obedient, model students, but have maybe one or two friends, if any. 


Miggy:  I’m also curious about your family, in particular your parents, and how you were raised?  How did they help you make the most of your disability?  Were there things they did that were really great?  Was there anything you wish they would have done better, or at least differently?  


Kelly: My parents did not know I was disabled, they just said I was "different" and told me to be proud of my difference.  However, they both abused my sister and I emotionally and verbally, so they weren't fit parents.  I don't think they should have had children at all.  My father died three years ago and my mom and I have a very limited and tense relationship. What do I think they could have done differently?  Asked for help to deal with their own issues and those of their children.


Miggy: I don't know a lot about you, but I do know that you're married, you have a job, a child and run a blog about autism as well.  It seems that you would be categorized as "high functioning."  I think it's a common perception that people with disabilities have a much lower chance of leading a "full" life--marriage, family, employment, etc.  What do you want people to know about your life now and how it relates to having autism?  

Kelly: Pssst, we also don't use functioning labels to describe our disability: http://www.onequartermama.ca/2013/12/why-i-dont-like-functioning-labels.html 

My high school sweetheart's brother is also Autistic, so I  think I simply attract patient men who can deal with autism.  My husband is very calm, level and patient.  I am more spontaneous and childlike.  He is my grounding sounding board who says, "I don't think that's a good idea" to some of my crazier ideas.  So there is love to be found in patient people.  We also have a level of cooperation and teamwork that I don't know other couples maintain.  We simply pick up each other's slack for the higher good of the family. 

As for work, I did best when I was self-employed, but the ups and downs of that were tough for us early in our marriage. That being said, I consider myself chronically under-employed and jumped around from job to job in the past.  Only recently have I become a bit more stable in that regard.  This current job is the first time I've asked for accommodations (since I finally have a diagnosis) but it hasn't been met all that well.  I may take the leap into entrepreneurship again soon.

I think the take away is that we can achieve a "normal" life, but I know for me, I need to make sure I don't get overwhelmed.  I take a lot more breaks than most people.  I don't drink alcohol at all or go to bed late.  When I do go out and socialize, I need the next day to recover.  I know my limits and have to stick to them if I want to remain productive. Constant self-care is the best way to put it.  Also, I've learned my happiness is more important than money. 


Miggy: Now lets talk about your son.  At what point did you figure out that your son has autism as well?  What was your reaction then and how do you feel about it now?  


Kelly:  I knew something wasn't quite right very early on, but I couldn't pinpoint what. Because of my degree in Linguistics, I knew he wasn't developing language skills normally.  I knew he was most likely apraxic.  Doctors did not believe me when I brought up his developmental issues, so I had to find a private psychologist to assess him. When we got the diagnosis of ASD and SPD, I was not at all surprised.  It felt like a relief and validation to know I wasn't crazy or making things up.  We got the apraxia diagnosis a year later and I was upset because it felt like a double-whammy of challenges for him.  I didn't want him to have such a hard time growing up, like I did.  I still consider his apraxia much more challenging to deal with than his autism.  Probably because I can relate much more easily to the autistic experience. 


Miggy: What are your biggest day-to-day challenges, both as a person with autism and as the mother of a child with autism?

Kelly:  I have to make choices about what I can accomplish each day.  I limit myself to usually one activity a day.  So one day it's groceries, another day is laundry.  There's a lot of teamwork involved in my daily living.  I may load and start the dishwasher in the morning before work and my husband will empty it when he gets home from work.  I will put the wash in the laundry and hubby will put it in the dryer.  Everything is shared.

When it comes to parenting, I see it as an advantage.  I see things from my son's perspective and understand how he experiences the world, for the most part.  I often act as a behaviour decipherer for my husband.  I'm like the Autistic Whisperer.  I often say, “he’s doing that because of this and now he needs this."  I think my understanding of him allows him to be freely who he is, and it must be nice for him. 

I also don't know what it's like to parent any other way, so I'm just used to it. I have to repeat the same things hundreds of times a day, and it's not an issue for me.  I know a lot of other parents are really bothered by certain autistic behaviours, but I know things will get better with time, so it's not a big deal to me. 

     
Miggy: What are the biggest worries you face for your son?    

Kelly:  I fear abuse from others and people taking advantage of him.  I want someone to love him well after I am gone. I want to know he will be well-loved and cared for.  I also want him to feel productive and happy.  I don't want him to suffer as much as I did.  I set the bar high and I make sure he is well-loved and respected at home.  I want him to be able to stand up for himself and know what is right. He should expect the best and he only deserves the best.  I don't want anyone to ever convince him otherwise. 

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations? 

Kelly:  Not really funny, but it might look strange to others: if we're out and we can see we're getting to the sensory limits and need to make an exit in order to prevent a total meltdown, my husband and I will look at each other and say, "oh, it's starting...." and then we just start packing things up. Others on the outside don't notice a difference in our son's behaviour, but we're able to see the little signs when they start and we're very proactive about it.  


Miggy: How can people best approach or respond to you, your family and/or your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Kelly:  I wish people had more tolerance for difference.  We get stared at a lot while out in public, not just because we're an interracial family, but because of my son's behaviours.  He jumps, flaps and hums almost constantly.  I don't stop him from doing these things because it doesn't harm anyone.  If he were hitting someone, I would do something, but his behaviours are not discipline issues.  He is extremely obedient, but only when it really matters.  I don't demand a perfect quiet child.  I let him be his exuberant, happy self and I get a lot of dirty looks.  Different is not wrong, it's just different.  Different is not dangerous either.  Jumping is just jumping. Singing is happy. Why get worked up about it?  And if a singing jumping child is the worst thing you see in a grocery store today, and that makes you angry, you have problems and should have stayed home. 


Miggy: What would you say to the mother who's child was just diagnosed with autism?  If there was one thing you could help the world understand about people with autism what would it be?   

Kelly:  Don't panic and there's no need to rush anything.  It doesn't mean we will never learn, we just take a more scenic route :)  The wheels in our heads are constantly turning. You think we're in our own world?  We're not - unless you're extremely boring to us.  Even if we're non-verbal, talk to us about science, about how the world works.  Get down to our level and see the details.  A lot of the time, parents think because their child doesn't parrot back the ABCs, they don't understand anything.  Instead give them letters or a crayon and let them surprise you with the fact they can read and write.  Or get them an iPad.  Don't keep reading us baby books, move on to bigger subjects, because we're already past that.  We hear you. We hear everything you say. Even as an adult in an office with people whispering, I hear your conversations and I remember them.  All of it. 

There's no rush or competition. This generation of kids will live to be at least 100 years old. They have plenty of time to master skills.  Don't stress over milestones, just keep teaching us stuff.  We are curious people - just keep feeding our brains facts.  It doesn't matter if I can't tie my shoes, allow me to become a physicist and I'm sure I can pay someone to do that for me. 

Also, read lots written by Autistic adults.  A lot of us have had the wrong stuff done to us and we're willing to share what does work instead.  Your number one job as a parent is to protect us from abuse.  Protect us from people with bad intentions because we're not able to read people properly and we need help figuring out a good person from a bad one.  Educate law enforcement so that they don't shoot us for not complying with requests to stop screaming, running or "acting oddly."

Let your child have a real childhood.  Watch out for those who want to charge you tons of money for hours upon hours of "therapy."  We need to play and learn on our own as well.  Get into our interests.  If we're into trains, buy us trains, and show us train documentaries.  If we're fascinated by lock mechanisms, buy us a lock picking kit and practice locks.  If we're into computers, teach us to code.  We usually learn everything we can about one thing and then move on to something new.  Support us in our interests and we will surprise you. 

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Thank you so much Kelly--that was fantastic.  So informative and helpful.  First, I have to say that I was struck with your advice at the end about supporting Autistic children in their interests--all I could think was, yeah I could be doing a better job with my own children in this area.  Brilliant advice, especially for Autistic children.  And I smiled when you said "we just take a more scenic route."  Couldn't we all stand to slow down a little?  But I absolutely love what you said about a parents number one job is to protect their Autistic children from abuse.  Children by nature are more vulnerable than adults, but children with disabilities even more so!  I too worry about the vulnerability of my daughters--particularly Lamp--so I'm very glad you mentioned this.  Thanks again for sharing you and your son with us today!  So enlightening and educational.  Much love to you and your family.  


If you or someone you know would like to participate in the Special Needs Spotlight series please email me, or have your friend/family member email me directly, at thislittlemiggy at gmail dot com.  

Have a great weekend!
  


5 comments:

  1. Thanks for featuring us, Miggy! Yes, I did mean for the language link to be in the interview. I find there are a lot of arguments about that, so I like having the "official" stance known.
    I can't wait to hear your interview answers for my blog!

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  2. That was incredible! Thank you, as always, for sharing!

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    1. Thanks for reading, Kimberly!

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  3. I really appreciated this article, and as a linguist, I benefitted from the semantics conversation. Thanks again. This topic was so pertinent, and thanks for being willing to share your story, Kelly!

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    1. Hello fellow Linguist! So glad you enjoyed it.

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