the circus!

In October the Circus came to town.  It was a nice break after a Busy Fall.  We saw lots of animals, smuggled in snacks, and had a good time with Heather (their wonderful babysitter).  I think J enjoyed the popcorn best.

Jordans 1st day of School

August brought a huge milestone, Jordans 1st day of (all day) Pre-K.  He went 1/2 days in the Spring, but going all day, 5 days a week was a huge step for him.  He attends the Autism Class at Woodland Park Early Learning Center, and loves his teacher, Ms. Gwenn.  She is amazing, as is the helper and his 2 classmates.  I will update in another post about the amazing progress this school year has brought.  Jax found his way into every "1st day pic" I took of Jordan.  Such a ham.

Camp Week One

saving the best for last......

Dear Jordan

Dear Jordan,
You are a rockstar.  And I know I'm your mom so I kind of have to be a bit biased, but I think others would agree.  When I think back over this year and see how you've grown, I cant help but be amazed at what an awesome little guy you are.  This year you went from not being able to hold a crayon or pencil to drawing lines and tracing letters.  You went from one or two word utternances to complete sentences!  You went from avoiding social situations to playing and sharing with friends, even initiating conversations and calling people by name!  You went from being unable to handle loud noises to learning how to cover your ears or remove yourself from the situation.  I know you have far to go, you will struggle harder than I would ever want you to....I wish I could make it easier, but you are shining and I am so proud!
Yesterday when I picked you up from camp and saw you sitting against the wall eating lunch with your new friends I was elated.  I doubt many of the other parents would find this out of the ordinary, but it was such a huge deal to see you sitting happily by your friends eating with them....and when we left and they were telling you bye and giving high-5's my I was jumping for joy inside.  It's times like these when I KNOW you will go far.  So many times I let your 'label' cloud what I know you are capable of.  You teach me daily about perseverance, and while patience was never my strong suit, I find myself tons more patient these days (you're a great teacher :)  I love you and no matter what we face in the future I know you will shine....I am so thankful for the grace that God has given us to make it through this year...and His grace will continue to lead us. 
i love you j-bug,
Mommy

we've come a long way, baby

on the long drive home from Georgia Asah and I began to reflect on where we were exactly one year ago, July 4th weekend 2009. i can honestly say it was one of the darkest times i can ever remember. there was a cloud of grief, uncertainty, hopelessness....there was something wrong with our son and we were on the verge of receiving a diagnosis that would change our lives forever. i can remember the feelings, tears, sleepless nights, wrestling in prayer with God, begging for mercy....anything but Autism Lord.
i cannot remember when the cloud lifted but it eventually did...and we began to see Jordan (again) as just Jordan, our bright precious boy who had a label but WAS NOT defined by that label...we began to dig deep into research and therapies and doctors visits and evaluations. it was overwhelming and a full time job in and of itself. advice (both wanted and unwanted) came pouring in from all sides. i was clueless but peaceful and i knew that God would guide...and he did. it is amazing the gift he gives us, as parents...to just know what is right for your child. i have no doubt He led us to the right therapies, specialists...opened doors that were closed, gave him compassionate teachers and people who understood. looking back i'm just amazed at how it all took place and i can truly say that today we are not in the same place. we are hopeful. God has been gracious to us. Autism is a terrible thing but I believe that God's plan is so much greater. We've been so encouraged by the progress this year has brought. Jordan is speaking in complete sentences, drawing lines and starting to trace, and working hard in social areas. We have so far to go, but I KNOW he can do it!
to those who've helped us get through this year, my heartfelt thanks. i dont think i'll ever understand it; and that there wont be days that i'm not overcome by the grief that tends to seep in from time to time. the hardest times for me are when hes with kids his own age and their having conversations with their mommy and drawing pictures and participating and even sitting still for more than 2 minutes....those are tough times...but then there are times, like the other night, when i got an "i love you" (a spontaneous one; without me telling him first or asking him to say "i love you too mommy") or when he plays with my hair at bedtime, or cackles while wrestling with his daddy.
we were out on the lake July 4th and i was telling someone about J's struggles. they said something that i've never really considered, and i dont know why i havent considered it...."Maybe God will give him a new name, just like Abraham". of course, God can heal Jordan.....fully. and i have prayed to that end, believe me, there have been hours of prayers asking God to make Jordan whole. and the fact is we are not the same people we were a year ago. and i'll never stop praying for a 'new name'. but if it doesnt happen, God is still sovereign, and he is still SO GOOD to us. we are thankful for this year, no matter how difficult. we cling to God's grace and mercy. i cant wait to see what the future holds for our precious boy.

progress

As J comes up on his last few days of "school" or what i like to call his transition to school; I'd like to share a progress report!
And not just in title, this really is progress people!
Exhibit A:

Yes, this doesnt look that impressive, but to us it's like gold.  Here's why:  Before school J could not draw a line.  Or a circle, much less a letter or his name or a picture.  At first, the OT and his teachers strictly worked on getting him to draw.  Something.  It started with marks on a page, then turned into lines, and eventually circles.  When he started he still held his pencil with an 'infantile grasp'.  While he's still working on feeling comfortable with a pencil or crayon, he was able to do this ALL INDEPENDENTLY the other day.  Huge for him!  We are way proud.  The fact that he matched his letters wasnt the shocker to me...he's known them forever....but the lines made me dance! 

He's also requesting things he wants and needs in complete sentences!  This is huge!  He has a sentence strip that is prominently displayed on the counter.  It reads "May I have ____________".  So when he's yelling one word phrases we'll grab the strip and it prompts him to correctly ask for what he wants/needs.  I was so skeptical but it works like magic.  You can tell he's proud of himself for asking the right way...and the goal is to eventually eliminate the need for a prompt.

Exhibit B:

We had a pre-IEP Friday to determine goals for next year.

Jordan will remain in the self contained autism class for Pre-K.  He will start the school year with 15 minutes in a regular ed class for center time mainly for social.  His teacher said his academics are excellent, well beyond where they should be...but we pinpointed the deficits as still fine motor skills (writing/coloring, zipping, buttoning, etc) and social skills (attending to an activity, relating to peers).  We are also scheduling additional OT time at North Oaks (Rehab Hospital) to give him extra help with life skills stuff.

Just wanted to give a general update on the J bug.  We are so proud of him and looking forward to summer time!

When Clueless People Attack

This post is by one of my favorite Mommy Bloggers.  Her stories concerning her son, Noah, who has SPD (an austism-like disorder) are usually stories that I couldve told myself, she just writes way better ;)
This recent post describes an incident in a mall.....

Every week there are countless instances where someone approaches Jordan and asks him a simple question.  His name, age, etc.  He doesnt answer.  He's not rude....he just doesnt know how to answer.  Same thing goes with kids at the park.  They want him to play; he doesnt know how.  I find myself in a place almost daily of having to figure out how to tell complete strangers that my child is "different".  Sometimes, like this fellow mommy, I choose to ignore or divert just because it's easier.  Sometimes I wish there was a sign we could carry around that would make it way easier to explain behaviors.

Because of Jordan I'm keenly aware now of others who may have similar problems, or completely different problems that manifest themselves in a similar way.  Like this blogger, I'm far less apt to judge these days....
Jordan continues to make me a better person, a more patient person, much more aware of others.
This is part of the talk I gave a month or so ago at a Womens Conference:

There are special blessings that come from raising a child with special needs. The veil has been lifted from my eyes, and I now see beauty where I used to see emptiness. There is compassion in me where there was once selfishness. There is laughter and fun where there used to be a constant mental rundown of tasks yet to be completed. There is even personal acceptance instead of feelings of inadequacy. I would not trade these gifts for the world. Will Jordan be “healed”. I don’t know the answer, but I do know this. I have been Healed. Healed from selfishness and blindness to the suffering of others. I am no longer the same; and every change has been for the better.

Thanks, Jordan....you're helping me daily to see that it isn't about me.  You're also helping me to be compassionate towards others.  Sometimes there are hidden blessings that come with Autism....and for that, we are thankful.

First Day of School

Kid, you will move Mountains!
Today is your day!
Your mountain is waiting, so get on your way!
(From Oh! The places You'll Go) by Dr. Seuss
Full Text here...oh, I forgot how much I love this poem!

when did this happen?

it's your 4th birthday today, sweet boy.

but i swear, it was yesterday....and I was meeting you for the first time....

I had no idea what I was doing but it sure felt good to have you all warm, and snuggly, and safe in my arms.  And that day I knew I'd love you forever.

But seriously, not long ago we were doing this.......

Your 1st birthday party in GA....a freezing cold (think 20 degree!) April day.  And all our family and friends were there and it was a great celebration.

And then I turned around and.....

suddenly you were 2, a toddler, into everything and enjoying life!  We celebrated two with a crawfish boil (you are a true Louisiana boy!).  All your favorite Sesame Street characters were there too.  what a pretty Spring day.....

but seriously, it couldnt have been that long ago.....

that you turned three...and we had a huge Fiesta.  Such a big boy, growing in so many ways, happy to be surrounded by all your friends and family.

I guess it has been 4 years.  4 wonderful, beautiful years of being oh so blessed to call you our boy.  We are SO PROUD of you....even though some days are struggles you always shine so bright....and I am so thankful that God chose to give you to us.  I know that your 4th year will be so amazing, filled with many firsts....I cannot believe you are starting real school this year and that you wont be home with me every day.  I cant believe how tall you are growing and all the wonderful things that you can do.  I know that I'll turn around again and you'll be 5, and 10, and 18 years old....but sometimes I close my eyes and like to remember times like this......

Happy 4th Jordan.  Soar!

easter egg hunt

we LOVE the speech clinic folks at SELU!  they work with jordan so well and he loves it there.  they were so sweet to do an egg hunt for the kiddos.  for the first time ever, jordan seemed to enjoy hunting eggs.  he also had another first...getting his face painted.  we told him it was like a sticker on his face.  he's never been interested before.  he loved looking at the star and easter egg on his face.  jax loved hanging out too.  he thinks he's one of the big kids.  his personality is hilarious and he keeps us laughing daily.

official team jordan pic

i thought this was great.  the photographer at the walk took everyone's team photo and here's ours.  i love the way Jax is waving to the camera.  he's a hoot.  what a wonderful day that was!

walking a mile in our shoes.

we walked a mile. but not just any mile. a mile representing hope, and a brighter future. autism is not a disease! there is no "cure".....i love what our speaker said last weekend at Parent Conference. when describing a child he worked with he said that "Pedro was a little boy with the ATTRIBUTE of Autism". many days it doesnt seem that way.....but on this Bright and Sunny First Day of Spring...with so many (800+) in support and countless friends and family who gave...I can see the attributes. There are many. These children are precious. And I am blessed to call one of them my own. I loved walking with Team Jordan. And while 4 years ago I wouldve begged NOT to be here, I am okay with being here today.

We love our J-bug! And this day was for him........

Jordan's Teacher, Ms. Tilley, walked with us!