The Week in Pictures: Week Two

Since I must give credit where credit is due, all pictures this week are the work of my oldest, Ryley. 

And no, we did not desecrate historical property, just in case you were wondering.

The Week in Pictures: Week One

A little celebrating...

A little playing in the backyard...

A little wagon riding...

A little snackin' at the food trucks...

A little hangin' with sis...

(and a little "taco beard")

A little lounging around...

A little walking...

A Little Soul Work

I've been doing some thinking lately.   

And this little statement here pretty much sums up my thoughts:

I've been talking to some pretty wise people the past few weeks (and yes, Mom, you're one of them!) and I've come to a conclusion about myself.

I am being swallowed up by special needs.

And here is what I mean:

The top of my nightstand is covered with special needs books.

I research therapies, products, treatments, doctors.... anything to do with special needs.

I send a written report every single week to Lily's California doctor.

I take Lily to ABA 5 days a week, speech 3 days a week, and OT 2 days a week.

I administer medication 3 times a day, 7 days a week. 

I have a monthly parent training meeting at the ABA clinic.

I attend two monthly special needs support groups.

I am doing an online Bible study that is for autism moms.

I have several moms that depend on me for special needs support.

I take Lily for bloodwork every 6 to 8 weeks.

We just added an immunologist and an infectious disease doctor to our regular rotation.

We are beginning the public school process which means ARDS & IEPS are upon us.

80% of the people I follow on Twitter are special needs parents.

I read tons of special needs blogs.

And I try my best to blog about our own special needs life five days a week.

I could go on but I think you get the idea.

It's time for this mama to take a break.

To step outside and get some air.

To love on a very patient husband and talk about something other than the next appointment.

To spend some time with a teenager who's about to leave our little nest.

And to spend some time behind the wheel with another teen.

I told you in a previous post that Ryan is taking off the month of June.  

Well, so am I.

Beginning today, June 1, and for the whole month of June, this little blog will only have a post each Friday.  And those Friday posts will be called "The Week In Pictures" - hopefully filled with images of fun stuff the Rush Family did that week.

As for Twitter and Facebook, I'll be checking in off and on.  But more "off" than "on".

To my sweet online community, I will miss you dearly.  And I am already looking forward to catching up with you in July.

But for now, for this month, this is what "Lana's To-Do List" will look like:

Courtesy of Homegrown Hospitality

My family needs this.

I need this.

I am stepping outside and getting some air.

See you in July.

Wordless Wednesday

Lily Bird, aka "The Smoothie Thief"

The Anti-Romantic Child - A Book Review And Give-Away

"This child will love to read.  Will play basketball like his daddy.  Will go shopping with mom.  Will love to laugh.  Will be creative.  Intelligent.  Responsible.  This child will never throw tantrums and will happily eat all his vegetables." 

Are these the kinds of things you said about your children before you had them? 

Me too.

No matter how many child rearing manuals we read or how many parents we interview, children have a way of surprising us when they make their arrival into our families.  In fact, we seldom get the child we were "expecting" when we were "expecting".

Priscilla Gilman's book, The Anti-Romantic Child, is proof of this.

While Priscilla experienced some heartbreak as a young child, she had what she herself refers to as, "a romantic childhood", full of creative, unstructured play such as reading, writing stories and songs, making up plays for anyone willing to watch, dancing, singing, drawing pictures, and plenty of outdoor fun.

As a college student, Priscilla fell in love with the poet William Wordsworth and felt a deep connection with his eloquent expressions of childhood and loss.  His words, along with her own upbringing, formed a firm foundation for the children she would have someday.

But when Benjamin was born, Priscilla realized just how romantic and idealized Wordsworth's picture of childhood was.

Benj challenged Priscilla's notions of the lithe, graceful, and carefree Wordsworthian child.  He had an intense need for things to be "just right".  He was fastidious to the point of compulsion.  He had motor development issues.  He had difficulty chewing, preferring to eat baby food from jars well past the age when most children had moved on to table foods.  At the same time he seemed to be lagging behind his peers, he was quite advanced in other areas.  He recited the alphabet with ease at 16 months of age and could read entire books fluently just past the age of two.  He was obsessed with numbers, and could count from one to one hundred shortly after 14 months of age.

Priscilla discovered Benj was hyperlexic, a condition in which children have, among other things, an above normal ability to read accompanied by a below normal ability to understand spoken language.

The Anti-Romantic Child follows Priscilla's journey in coming to terms with the fact that life would be different than what she imagined.  That she, the professor of English Literature would herself become the student of her son, learning to love, accept, and embrace Benjamin just as he was created.  

When I was approached by TLC Book Tours to host Priscilla Gilman and The Anti-Romantic Child here, I was excited because I had already read the book and loved it.  

The Anti-Romantic Child is different than most "special needs" books I had read, the narrative sprinkled with poetry and nuggets of self-revelation.  It was not a "how-to" manual or a story of recovery.  It was quite simply a beautiful book and a joy to read.

There were several times throughout the book that I felt like I had discovered a kindred spirit in Priscilla.  

We both struggled with seeing our children as more than their diagnosis; as distinctive individuals.  After Lily was diagnosed with autism, many people would remind me that she was the same child she had always been.  Upon hearing those words herself, Priscilla voiced the same question I couldn't help but ask myself, "But what had he/she been??"

Like Priscilla, I came to understand just how much we take for granted - the ability to speak, to understand spoken language, to pretend play, to decipher body language, to engage in effortless conversation...  We have so much to be thankful for but so many of us just expect these things to come naturally for us and our children.  I have learned to celebrate every single milestone my daughter, Lily, meets and to never forget that all human beings are a miraculous creation of God.

I have learned to adjust my expectations, understanding that Lily must be taught things that are often instinctual for others.  I had to laugh when reading Priscilla's description of "play therapy", because I could so totally relate.  Most of you faithful readers know that we have been doing Birdie Boot Camp in an effort to teach Lily how to play.  While it can seem forced and unnatural, it is a necessary part of her learning.  (For those of you unfamiliar with Birdie Boot Camp, click here and here to check it out.) 

I absolutely love how Priscilla sums up her experience with Benj.  She writes:

"I have had to come to terms with the loss of my romantic vision, my idea of how my child, and my life, were going to be. But out of the death of that dream has come a flourishing of amazing life.  Being Benj's mother has changed me profoundly, has made me more, rather than less, idealistic; more, rather than less, passionate; more, rather than less, creative."

Beautiful.

I had the fortunate experience of catching up with Priscilla on Facebook Monday afternoon and was able to have a little dialogue with her that I want to share with you:

The lovely Priscilla Gilman herself

(Me) How is Benjamin doing now?

(PG) Benj is now 13 and taller than I am!  He's in 7th grade in a special school and doing wonderfully. He's a passionate musician, inventive writer, and enthusiastic NY Giants and Mets fan.  This summer, he'll attend camps for songwriting, music programming, and stop-motion animation.

(Me) What would you say is the most important thing Benj has taught you?

(PG) The most important thing Benj has taught me is how to appreciate, respect, and honor difference.

I believe all of us parents of special needs children would say the same thing - that our lives are richer because we share it with these amazing children.

One final quote from the book that I love, love, love:

"To be nobody but yourself in a world which is doing its best, night and day, to make you everybody else means to fight the hardest battle which any human can fight and never stop fighting."

e.e. cummings

That right there, my friends, that is true for every single one of us.

Now, have I made you want to run out and buy the book?  I hope so!  

But before you head out to the bookstore, let me tell you something really fun and exciting - I have a copy of The Anti-Romantic Child to give away!

Yes, you read that right!  One lucky person can WIN their very own book!

All you have to do is leave a comment below.  It doesn't have to be eloquent or wordy, just let me know you'd like a chance to win the book and you're entered.  On Friday, June 1, at 12 Noon Central Standard Time,  I'll use random.org to select one of the comments to be my lucky winner.

And don't be fooled into thinking this book only applies to special needs parents!  The lessons of love and acceptance found in its pages apply to all parents.  So if you're a parent, you qualify to enter the contest.

In the meantime, click here to visit Priscilla's blog to get better acquainted with her.  You'll be glad you did.

Now, what are you waiting for?  Leave a comment!  And good luck!

In the interest of full disclosure, I did receive a copy of The Anti-Romantic Child in exchange for my honest review.  My opinion is my own and is not influenced in any way by the free book.  In fact, that free copy is the one used for the give-away since I already have my own! 

   

Happy Memorial Day!

Courtesy of Homegrown Hospitality