Showcase--Ilene from "My Family's Experience with Autism"

  This week, I had the pleasure of interviewing Ilene from My Family's Experience with Autism.  It is a very straight forward and honest blog-sometimes funny-sometimes hard. ( Here is one of her favorite posts). I think that it would be worth your time to go and check it out. 




1)  Tell us about yourself.....likes, dislikes, favorite things to do....silliest thing you've ever done...where do you see yourself 20 years from now.....what would you tell yourself (if you could) 20 years ago?

I've always been a very goal oriented person.  I always had my to-do lists and would get things done.  I guess you can call me a go-getter.  And I still am.  I volunteer for things even though I know I don't have the time for it because I know I can figure out a way to "squeeze it in".  And I had my life planned out.  Then life actually happened.  20 years ago, I always figured I'd be one of those who had it all.....family, career, the perfect balance.  And it worked for a while.  When I had 1 child, balancing career and family was (reasonably) easy.  Then after the twins were born, everything changed and I chose to stop working and become a Stay At Home Mom.  And I have NEVER regretted that decision.  And, given what's happened, I'm extremely happy I went that route because I don't know how I could balance a career working in medical research (what I had been doing) and autism in the home.  My life became more predictable.  My life became a schedule.  I'm not saying that's a bad thing.....change often isn't a bad thing and just because things turn out differently than expected doesn't make it a failure.  But there have been times where I wish I could have told myself in the past that things don't always work out as you plan.  And sometimes, you need to follow the path as it lays out in front of you to see where it leads....you never know what you may find down an unexpected detour......

I really am quite a boring person.  I always did what others expected from me, not really because it was expected but because I wasn't daring enough to push those boundaries.  I like relaxing with my family and traveling to tropical locations.  I love going snorkeling in the Caribbean and downhill skiing (not that I've done either of these in ages).  I have hobbies that allow me to sit while watching TV including crocheting and knitting and I enjoy avoiding having to play (unsuccessfully, of course) the made-up games of my typical 6-year old.  The silliest thing I've ever done is sing karaoke while vacationing and even in front of my in-laws in a bar after my brother-in-law's wedding (you have to know this when I say that's silly -- I CAN'T SING!!!!!).  I went to college then graduate school and then went to work.  I married for love and we've been together for over 13 years and have 3 wonderful children to show for it.  Boring, predictable me....I guess that prepared me for what was to come.  I now HAVE to be predictable.  I MUST be a steady rock for my kids so they know what to expect.  Things in this world change.  But "Mom" can't.  She is always the same.  And because of that, at this moment, I can't imagine where I will be in 20 years.  I just hope that my kids will be capable of being on their own so that I will have some of the freedom at that point that I currently lack.

Autism HAS taken over my life.  Even when I'm not with my children, I'm thinking about the subject.  Either of my own kids or about advocacy.  I "admin" a Facebook page (http://www.facebook.com/CareAutism) and am trying to start a career as a parent advocate, even though I'm not fully sure what it means.  I have used my blog to cope with what I learn, to educate others, to vent or brag about things that are happening, and it's another one of those things that is often just on my mind.  New opportunities for me to reach out about autism from a Mom's perspective keep cropping up and I can't turn them down.  I've actually made Autism Awareness a personal mission for myself -- I need for people to GET IT!!!!

(2)  What's it like having twins?  Especially after having one child?  Was it a shock?  Was it overwhelming?  Has it gotten easier as they have gotten older?  How did you oldest son deal with all of a sudden having 2 siblings?

I was already freaking out about having kids close in age BEFORE learning I was expecting twins.  My brother and I are nearly 8 years apart as are my mother and uncle (with no one in between). THAT is what I was used to.  Then when I was told that I was carrying twins (at 6 weeks pregnant), my first reaction (other than holding to the table for dear life) was "I CAN'T BE HAVING TWINS -- I HAVE A NEARLY 15 MONTH OLD AT HOME", like that was going to change reality.  But honestly, once I got over that shock and had some time to prepare, I really like the idea.  They all have playmates (of a sort).  They grow up together and my older son doesn't even remember life without his brother and sister.  I think, for HIM, the fact that we had to leave them in the NICU for a few days really helped.....I was gone and then came home a few days later. He got to see pictures of his brother and sister before they came home and changed his life.  By the time we were all under the same roof, he was ready for it all.  But one thing's for sure -- parenting multiples is NOT the same as parenting singles.  Not that it's harder, or more demanding.....it's just DIFFERENT.  Having kids close in age isn't quite the same thing.  I wouldn't change it for the world, and I consider it a privilege to have the opportunity to be a mom to both a singleton and a pair of twins. 

(3)  Were you surprised with the ASD diagnosis for your twins?  How did that change your perspective on life and on parenting?

For Simon, not really.  The subject had been brought up at least once before about 6 months before we learned the truth, and even though I wasn't ready to hear it or accept it, I think the thought was growing in my mind, even if I didn't realize it.  When we were first asked if we wanted an autism work-up done on him, that just seemed like the right thing to do.  And we might as well do it for Rachel to, not that we have anything to worry about.  WOW!!!!!  Was I ever wrong!!!!   A month later (approximately), a developmental pediatrician told me they were BOTH on the spectrum.  I was upset about Simon of course, but learning about Rachel was just devastating!!!!! Looking back, everything was there.  The behaviors, the lack of eye contact, the lack of interest in others...but I never saw it.  I think it took until we started seeing success with ABA approximately 6 months later before I truly realized that she was also autistic and not just Simon, even though I was able to say it to others.  And when the school psychologist AND the developmental pediatrician at Kennedy Krieger told us that both of them had "Severe Autism", it was another shock.

Learning something like this DEFINITELY changed my parenting style and many other aspects of my life.  What I was doing wasn't working.  My older son who is not at all on the spectrum is a very independent learner.  He loves to be with his friends and work in groups.  He loves playing sports.  All these things that when you become a parent, you expect to see in your children.  When you learn about an autism diagnosis, you realize that YOU have to step in to make these things happen.  YOU have to force the eye contact -- they don't seek it on their own.  YOU have to encourage them to want to communicate, because (again) it won't happen on its own.  YOU have to teach them how to interact with others.  YOU have to be the example that would normally be set by their peers because they won't seek out their peers, but can't avoid YOU.  YOU have to slow down and take things step by step.  It changes YOU and often makes you appreciate all the wonders around you. YOU have to work through the sensory aversions and determine what you want them to appreciate.  YOU have to learn to speak their language because, even if they are verbal, their ability to express feelings is slow to develop.  You always have to read "between the lines".

It also taught me that I have to learn to advocate for them.  I have ideas of what they need; of where they should be; of what they should be able to do.  And it's MY responsibility to make sure they are in an environment that will allow them to succeed.  I searched for 2 years to find a dance class that can accommodate my daughter.  I finally found it this fall and she is taking a dance class.  And she LOVES it!!!!!  She looks forward to it all week long!!!!!  And I pat myself on the back because I made this happen for her.  I kept looking.  I kept asking questions.  I convinced someone to develop a program to allow for kids with her unique needs and abilities to have a place they can go, just to dance -- something that all little girls should have the chance to do.  And it has driven me to want to become a parent advocate professionally.

(4)  What would you tell a parent new to diagnosis?

I would tell them that this is not the end.  Not by any means.  This is just a new opportunity to help your child now that you know that he or she doesn't think or learn in the same way that was originally thought.  People with autism do learn.  People with autism do feel compassion and empathy.  People with autism just see the world a bit differently.  I would also remind them that they are seeing the same person today that they saw yesterday, before learning that they were on the spectrum.  They were loved before, they are loved now.  It's just now you realize how special they are and that they need you to address things in a different way.  I have learned more from my children because I have been forced to see things from their perspective.  I have learned to slow down.  I have learned to embrace every little detail.  I have learned to SEE every little detail because that's what they need for me to show them if they are to understand what I am trying to teach them. 

(5)  What is the most important thing you would want people to know about your family?

That we are simply a family.  We live together -- Mom, Dad, 3 kids, and a dog.  We love each other.  We fight amongst each other.  We run around like crazy people to accommodate the Saturday extra-curricular activities.  And we live with the reality of Autism.  We have our good days and our "A-days", or at least our "A-moments".  Everything we do is based on a routine.  We can no longer be spontaneous.  Even if it appears to be that we are doing something spur-of-the-moment, we previously planned for it.  We thought out the pros and cons.  We thought about how we would handle potential meltdowns.  We have the goldfish or the gummy bears in a bag in my pocket, to be pulled out if the need arises.  And our lives have continued, thanks GREATLY to the Big Brother!!!!!

But most importantly, WE ARE A FAMILY!