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!

Shatner Will Always, Always Rule

For all our fellow geeks and nerds and Star Trek lovers.

--KWombles

If you liked Star Trek or Boston Legal or Shit My Dad Says (or T.J. Hooker, or any of the other shows Shatner has done over the last five decades), reading Shatner's latest book is a bright spot, a delight. If you pop for the kindle version, you can even listen to Shatner read it (which I may very well have to do!).

Shatner's book is an easy read, flowing gently and meandering as it suited him. Shatner makes the rules. At 80, he remains humorous and charming. He's also pretty damn frank in this book, too, and if you think he feels fondly about George Takei and Nichelle Nichols, you'd be wrong. Thirty some years of the mutterings of his co-stars has had its effect, and he doesn't mince words. He also points out how stupid that kind of emnity is given their advanced ages and how they could better use their time.

If there's one thing that's abundantly clear it is that time is something Shatner uses to its fullest. He's a busy man, even at 80, and making the most of his time. It's inspiring to read and see that 80 can be even busier than 40, filled with good work, good friends, and close family.

Shatner is bluster and swagger and primal male, still. But Bill, he's a nice guy, a family guy, and a gentleman. I like them both very much.

It was a lovely book to read, and Lily's excited to read it next. We love Shatner in this house, no matter what his age or what he's playing in. All the Shatners in one evening is fun to do, and Rosie was disappointed when Shit My Dad Says was canceled. She adored watching Star Trek and then diving into the new show when it came on. Neither girl ever worried or wondered over the marvel of seeing a young William Shatner and an old William Shatner. All they cared was that it was Shatner.

Here's to hoping for another twenty productive years, Bill. You rock! I grew up watching you, am growing old watching you, and am honored to watch my children grow up watching you act, listening to your music, and reading your books (TekWar and the Star Trek books!). You have shaped me and permeated my life. When I'm down I listen to The Transformed Man. Thank you for your contributions. You'll always be the best Star Trek captain. :)

Showcase-Floor Time Lite Mama

  This week, I have the pleasure of interviewing one of my favorite bloggers-Kajoli Tankha of "Floor time Lite Mama" I have always found her writing to be beautiful-soothing..even when she is writing about difficult times.  I have placed one of her favorite posts at the end of the interview.  I hope that you take the time to visit her blog.  You won't be disappointed.

Tell us about yourself? Your life..your favorite things to eat..favorite things to do..

I am the mum of a 6 year old child with autism and apraxia.

 I work full time in Consumer Insights. Between work and life and autism life is very full . But its also very good 

 I am married to the love of my life. He is a Stay at home dad and is one of those people that know how to do everything! 

I grew up in India – my dad is a doctor and he was in the army. I  grew up in a very close-knit  family with my mum, dad and sister. I had a lovely childhood living all over  the hidden India – lots of splendid  small places with unpronounceable names 

I have too many  favorite things to eat ( the reason for my cosy appearance) – but among the top are the street foods of Delhi, red velvet cupcakes with cream cheese icing, chocolate mousse and the  fluffy down-comforter like cheese omelets my husband makes 

I am fickle with my favorite things – but top favorites currently are Fall, Southern small towns like the one I live in ,  French Press Coffee, the color red , murder mysteries, happy stories  , psychology, bloggers, blogging, picture windows, yoga pants, basil, Facetime and of course playing with R, 

2) Your blog reads like lovely poetry.  Even when you are talking about the hard things. Tell us about your style of writing...is it easy to do?  It is so free flowing and yet exact..

Thank you for the lovely compliments in your question . I am all ablush.

It’s not only very easy , but the only way I know how to write.

One of the most important choices in life, is what  we choose to pay attention to. 

Depending on perspective, life really can be quite luminous( sometimes, even when its on the surface quite hard ) 

I think that gets reflected in what I write about which is why my blog has a  happy feel to it 

3) What do you think about autism-the way the world (general public) perceives it..the way you see it...the way your son sees it?

I think that there is a lot of confusion around autism because  there is no  one autism –

There are many autisms – with the only commonality in all the autisms having social and language challenges

Some of the debate in the autism community can get almost acrimonious, but often we are talking of different autisms. 

On top of that our coping mechanism varies greatly.

 If my child is suffering and I am the warrior type – I will have a certain way of dealing with it. Versus if my child is quite happy and I am the zen type I will have another way ( and all the permutations and combinations within these extremes )

I have become very very tolerant of other parents’ attitudes towards their children’s autism as long as they love and respect their children. 

Its hurts me when I hear parents “venting” about their child in front of their child assuming that just because their child cannot speak – they don’t understand about feeling like a burden.

I wish parents would look at their autistic children and think about the strengths they have and not compare them with neurotypical children. 

Like they say, if you measure a fish’s abilities by how well it can fly – you will always see the fish as a failure.

I and DH (him particularly) have a very accepting attitude towards autism. 

Though R gets a lot of therapy and help  – we have never thought in terms of curing autism. 

In fact, we don’t really think of what he has anymore – we just think about what he needs.

We have really questioned a lot of the models of looking at autism- 

Autism is not a shell through which R needs to break through. Autism does not preclude independence. Becoming normal is not the only way to be happy. Doing well in school does not mean doing well in life ( and vice versa ). And that a successful life has many versions etcetera

The general public is very aware of autism – things are so different than they used to be.

We can sometimes rail against public ignorance – but really things are so much better than they used to be ( remember “refrigerator mother” days  ). 

Our friends have really been amazing and accepting of R – autism and all- so we have been real lucky with that

In terms of how R sees himself - I don’t know if R really sees himself as very different or if he knows he has autism. He has had lots of therapy since he was 26 months old and takes hard work  as a regular part of life

He probably has a high opinion of himself. He is being raised by a very adoring family. 

We don’t really plan on having “the talk”( about autism )  – because we want him to see it as just another part of him. But sort of tell him casually.

And we don’t ever want him to think that there is anything wrong with him. 

Often its not the condition, but what we think about the condition that causes the real pain in life

4.) What is the most important thing you would want people to know about your son...your family?:

I think the main thing about my family is love 

DH and I are very dissimilar on the surface ––but  where it really counts  - we are very similar. 

We have 3 or 4 organizing principles. 

We do our best to be happy , we always prioritize love and caring in many of the things we do , we remember to be grateful 

About R, I and his therapists call him our Human Prozac.  He is bright, hardworking  and sweet and loving .

He is an amazing person and I thank god that he was given to me .

Dances With Rain

Last evening DH and I are settling into watch Medium (a show where a psychic finds suspects by dreams) 

DH and I always castigate the show.

Me from a Feminist standpoint (how come the only crime show where the woman is the main protagonist, is one where she catches criminals, not by her brains but by her "feminine intuition" ) 

DH from a lack of logic from the spirits ( if the dead people spirits want her to find the suspect why do they not tell her the whole story in the first dream- why do it in installments? ).Additionally her family is always on the brink of some crisis or another which provides plenty of opportunities for joint eye rolls. 

 Despite our low opinion, we DVR and watch it every Wednesday over ginger tea and popcorn after I get back from work. 

And enjoy ourselves tremendously.

But yesterday evening its not to be 

The new swimming pool( if you can call it that ) is beckoning like a beacon to R 

Swib !! he says 

Its starting to rain heavily. 

But we pretty much say no to nothing for R

( the two things that we say no to are -bad manners or bad for R – that is it- we say no to nothing else. "Following the child's lead " is a Floortime Principle that has pervaded every part of our life ) 

And of course I can never ignore purposeful communication 

So we go out to the pool in the rain 

And play all our games. 

I must pick him up and swing him according to the chants of an rhyme ( Zip Zap Zoop –right side together – left side together – a rhyme my niece taught me on a train journey once 8 years ago. My dog had died recently and my niece -only 4 – was trying to cheer me up – I have adapted it to Floortime purposes and R loves it ) 

I am sure he will be fed up with the rain after he is done with the pool and we are both soaking wet 

But its not to be 

He insists – "Siduh Huduh"( Swing me a 100 times ) 

By this time we are wetter than fish and I have given up trying to avoid getting too wet.

So after swinging I agree resignedly, when he says "Jumpuh jumpuh jumpuh "

We get on the trampoline which is wet and slick .

Hold hands 

Jump higher and higher 

Making circles.

Rain has made a little pool in the center of the trampoline and the water jumps up in rhythm with us.

We go on like this for almost a half hour

Interrupted only by the thunder and R's giggles and squeals of  "Hyduh "( higher) 

This dance in the half light of a dark sky feels like magic 

If it is all about not waiting for the rain to pass but learning to dance in it.

Then surely this lovely life has brought me both

Help Group Summit 20011

Registration Is Still Open For The Help Group Summit 2011: Advances & Best Practices in Autism, Learning Disabilities and ADHD

Friday, October 21 and Saturday, October 22  at Skirball Cultural Center in Los Angeles

The Summit will feature 22 experts presenting cutting-edge information in their respective fields. The Summit is open to educators, clinicians, researchers, parents, graduate and undergraduate students. Continuing education credits are available. The featured speakers and their topics are David G. Amaral, PhD, “What Has Neuroimaging Taught Us About the Brain in Autism”; Catherine Lord, PhD, “Early Intervention in Autism and Spectrum Disorders: Alternatives and Priorities” and “Autism Spectrum Disorders Assessment Across the Lifespan”; and Albert “Skip” Rizzo, PhD, “Virtual Reality and Game-Based Applications for Childhood Health Conditions.” With a long standing track record of excellence, The Help Group’s Summit is a thought provoking and state of the art conference that is eagerly anticipated year after year.  For detailed Summit information and a full list of presenters and registration, please visit www.thehelpgroup.org or call 818-779-5212.