Developmental Optometrist Visit

Deane and I travelled to Arlington Heights to see Mr. Neil Margolis, one of just a couple developmental optometrist in the state.  This was a rather big adventure for us to drive just the two of us for 3.25 hours each way.  Deane just chilled and watched some "Cars", snacked and rested with "Miggy" (his blanket).

We left after his morning therapy around 11:30 and arrived about 45 mintues before his appointment.  I took the opportunity to try Portillo's for the first time (I was unforunately underwhelmed by the flavor of their beef hot dogs).  We borrowed my mom's car and got out in the back to move around a little before heading into the appointment.  With Deane, a trip and visit like this could go very poorly depending on lots of factors which is why I wanted to arrive early, get out some energy, etc. 

I had typed in "Dr. Margolis Arlington Heights, IL" into my Google Maps on my Blackberry and followed the directions all the way there.  We left the restaurant parking lot in time to arrive at 3:15 (15 minutes early) so we could complete paperwork and get Deane used to the environment.  Upon arrival at the building, I pumped Deane up with "we're going to go to this cool new place", "Dr. Margolis is going to say 'show me your eyes'", etc.  We got up to the office of Dr. Margolis only to find out that we were at the Dermatologist on N. Arlighton Heights Rd. instead of the Dr. Margolis on S. Arlington Heights Rd.!!!  TWO Dr. Margolis on the same road! 

I'm certain the receptionist saw the panic in my eyes as I thought through to the process of getting Deane (who was wrapped around their waiting area fish tank already) back out of this building, to another with another pep talk in less than 15 mintues.  We had already waited 5 weeks to get in and of course dedicated to drive for 6.5 hours to make the appointment work.  She handed me the number to the other office and then decided to call there for me.  They were sweet at both offices.  Deane cried from one office to the next but fortunately changed his tune upon walking into the Optometrist Dr. Margolis's office when he saw the little chalkboard, puzzles, etc. 

I was sure that Deane would not cooperate with the exam because all I remembered from eye tests were looking into boxes and identifying where the red light was.  They took us to a room and turned on Elmo.  Dr. Margolis, a soft spoken man, came in to chat with me while Deane "got used to his being in the room".  Then Deane climbed on my lap in the exam chair, Dr. Margolis turned down the lights and turned on some sort of party light, barking stuffed dogs on the wall across from us, and began looking at various lenses.  Deane sat still!  It was unbelieveable.  We proceeded to try on different glasses and I coached him through doing this in the hallway as well.  Deane has glasses with prisms on the way and we're going to work on redirecting him when he's endulging in behaviors that reinforce a peripheral vision dominance.  Dr. Margolis explained that most kids become more dependent on their central vision with age, but that Deane is probably using this behavior (for example, getting on floor to look at vehicle wheels) to block out other sensory stimulation.

As I described the experience to Chris, he said, "this guys sounds like a wizard" and I thought probably summed up my amazement at how smooth the visit went.  I wish I had snapped photos of Deane trying on the frames or the crazy glasses attached by elastic that were reminscent of Sylvia Weinstock, but I just didn't have enough hands.

We learned a lot and will have new glasses to show off soon!

School Step 1

On Wednesday, August 17th, we visited the elementary school for the first time.  We visited the "at risk" and "special education" classrooms which are the only school based programs available.  Our options for schooling are the following:

1. Attend public preschool and receive services by likely receiving an IEP (individualized education plan).  We can still of course receive additional private services or ask for a modified attendance (fewer hours, services only).

2. Create some modified schedule/service plan other than full time attendance also through qualification for an IEP.

3. Attend private preschool and pay for services privately.

4. Keep Deane home for another year or more, teaching him myself in addition to private services.

We have to weigh so many things in making this decision with Deane's and our family's overall well being the primary focus.  Well being is obviously hard to define, we are looking at the progress he has made with different types of therapy, happiness, stress level, financial implications, goals of each environment and how they cooridnate to ours, etc.

I found the local elementary school environments very positive and look forward to learning more and taking the next step.

Deane - Autism - Update

We have a lot of reports, analysis, evaluations, goals, treatments, therapies, etc, but I think it's important to also document our impressions of Deane's progress.  I wrote the briefest of posts on the day we went to our all day evaluation.  During this time of our lives we were desperate for information, feeling completely isolated, and holding tight to God and each other.

When Deane went for evaluation, I listed his vocabulary as approximately 50 words.  Now I would guess it's around 200 words.  It's hard to know exactly what is acquired and what is just repeated.  I have to stop and enjoy this progress while still having really high goals for him. He wasn't saying any two word phrases and now he says several plus many simple sentences.

At the time of evaluation, we didn't have much of a handle on his sensory issues.  Tomorrow we will visit a developmental optometrist to see if his need to run things close to his eyes, hesitancy in jumping, toe walking, and clumsiness when running is vision related.  He has been improving on crossing midline, fine motor skills, and tolerance of different textures.  We introduced a weighted blanket which has changed our sleeping life.  Until three months ago, Deane was waking 2-3 times each week in the middle of the night, upset.  The blanket really seemed to be the key.  (Of course, last night, he woke up from 12-1AM so I hope this is not a new trend.)

Deane and Kate interact regularly especially since has started crawling and she is in the middle of his business.  She actually fell asleep on the way home from Muscatine this morning and he wanted her attention so badly he was calling her name and kicking her seat.  Needless to say, discipline remains a serious challenge in our lives.  I know some of these areas are totally typical, but I feel our communication challenges and Deane's sensory issues amplify his responses.

Deane receives about 21 hours of services each week now.  I'm looking to dial back that number to get back to enjoying our family life a bit more.  I have a better understanding of what is most efficient and have started to feel less concerned that I'm going to keep him from some successes by not doing every single thing available.  I'm trying to take it a day (or maybe a week) at a time.

Recent vocabulary surprises

One of my personal challenges is understanding how Deane will go from the language delayed place he communicates in now to a fully coversational place.  His challenges have taught me how nuanced and confusing our language is.  However, he has surprised me with a few things recently.

1. He started using articles.  Speech therapists often teach "I want..." to get a back and forth exchange over an activity and teach a child how to express their needs.  Deane has suddenly started adding articles, for example "I want A banana".  No one taught him this.  He is extrememly echoic (repeats everything back to you), but this signifies that he is modeling a general language concept....very exciting to this mama!

2. As we crossed the bridge into Muscatine, I said, "Deane, do you see the bridge?".  He said "That's crazy".  Where did that come from?  I love bridges and I've appreciated that he seems interested too, but this comments just caught me off guard.

3. As a precursor to trying potty training again, I encourage him to tell "Mom, I pooped" when he does.  I'm trying to find out how aware he is of it.  I know that sounds nuts, but for Deane it's not really a problem to run around in a poopy diaper.  Last night, I knew he had so I said "Did you poop? What do you say?  Mom..." and he said "is poop".  I clarified several times and he said "Mom is poop" everytime with a great big smile.  He was teasing me and as strange as it is to be happy about being called poop, I've told several people already :)

We'll get there....

Baby Sister

"Baby Sister" is the nickname we call you most often, Kate.  Along with "Sissy" and "Sissy Sue".  I just laid you down for your morning nap and as I held you I was almost in tears struck by how palpable your preciousness is.  You are so tiny and sweet and I know each phase is fleeting.  It makes me wonder if this will be the last 9 month old baby of my own or will there be many more?  I'm cherishing those moments.

You are so easy to put to sleep because you do all the work.  I typically still give you a few ounces of bottle in the dark with your sound machine on, but you are equally agreeable to drinking your bottle laying on the floor in the middle of the living room before being shuttled to your room.  Most times I sing "You are my Sunshine" to you, but not today.  We were just quiet and cuddly.  You always suck your thumb and put your other hand, fingers splayed, over your eye and cheek.  It's quite adorable.  I only rock you a short time and lay you down on your tummy or side.  I cover you with a little yellow and white afghan that came from the hospital (of all of the pretty pink blankets we have).  I've tried to introduce my blanket from when I was little, but you haven't taken to that as well yet.

You are sunshine and sweetness.  I'm so thankful for you in our family.

Butterflies

Deane - At 35 months, you are a full on, butterfly fanatic!  In the Ozarks, you were infatuated with the bush in front of the villa because there were butterflies there drinking nectar all day.  Every member of the family took you to see them over and over.  Uncle Andy tried to teach you how to pick up the butterfly, but the gentleness required is not in your wheelhouse. 

Shortly after getting home, I saw a pair of pink wings from a costume in the Gap Kids clearance.  I knew you had to have them.  You like to wear them for short period of time.  You also like the books "My Oh My A Butterfly" and "A Butterfly is Patient".  At the Autism Center, you love to have the butterfly flash cards around just to look at and for Mommy to kiss occassionally.

 

We love your our adorable Butterfly Boy!



Why I Blog

As I've considered sharing my blog lately, I have examined my reasoning for blogging.  I think it's relevant to document as a reminder for myself if I get tired of it, or the focus shifts or others who read it are confused by this public outpouring of our private life.

In order of priority, here is why I'm blogging:

1. To Remember:  I realize how quickly our lives pass us and I want an accessible documentation for Chris and I and our kids to see who we were, how we lived at a given time.  I want to remember good and bad times for what they were in the raw moment.

2. Deane's ASD (Autism Spectrum Diagnosis):  2011 has been the hardest year of my life (I recognize my life is easy compared to so many people in the world; just talking about my experience.) and as we come to terms with the challenges we all will face with/for Deane, I want to keep track of his progress, our struggles, and our successes.  I think this information could be useful to other autism moms out there (im no expert) and to those who care about us in understanding this process and understanding Deane.  My son is a rockstar and if you read my blog, you'll see why.

3. Creative Outlet:  When I began staying home earlier this year, I threw myself into a lot of creative outlets that I had only dabbled in throughout my 30 years.  I LOVE mom blogs, craft blogs, etc. and I want to participate in this technology driven community that is celebrating good old fashioned ingenuity, being thrifty through upcylcing and reuse, and supporting each other through the day to day challenges of being a mom and wife.

4. Encouragement: Autism diagnosis and becoming a stay at home mom have been very isolating for me.  Sharing our life in this form might just be the boost we need on a given day. 

5. Monetizing:  A distant last on my list at this point is monetizing the blog.  I know this will be part of the plan and I hope that it will help to supplement our family income in the future and assist with unexpected expenses that have become our norm.
So, that's my story....I think I'm very close to sharing this.  I have big dreams for my blog, but I plan to take it slowly because that's one of the many realizations of our new lifestyle...God has a plan for us far beyond what we can imagine.