Tuesday, January 31, 2012

What's Up

  • Today is Mamacakes birthday! Happy Birthday, Mom!
  • Apparently I have not been eating right and getting enough calcium because I ended up in urgent care over the weekend with symptoms of hypocalcemia. Doing better now. Must remember that man can not live on Nutrigrain, coffee and McDonald's alone. 
  • We got our vision insurance info this week which means I am one step closer to getting new glasses.
  • Things have not been exactly smooth with Early Intervention. My verse of the day on Monday was “Be completely humble and gentle; be patient, bearing with one another in love.” Ephesians 4:2 NIV.  All I can say is I am trying. 
  • We re-signed for 7 more months here at the apartment. We haven't had time to look for a place lately and Ross is still gun shy from what happened back in IL so heck, we'll stay put for now. We're happy here and I'd miss my view of the Sheep Range Mountains if we moved! 
  • In some areas Remy is doing better, in others he is doing worse. Or maybe I should say "more differenter."  It is not an illness, it is simply another way of being and we want to help make things easier for him but we accept him for who he is.  
  • Can you tell how scared I am? I have to keep reframing things, bringing things back into perspective, or I start to panic a bit.  I am not losing him and I will not lose him. He is right here and his development is not going to look like other kids development but everything is going to be fine.  

Sunday, January 29, 2012

How to Wear Out Your Welcome

In addition to cleaning up baby poo and cat poo, I am now responsible for this guy's poo.  And believe me, he poos A LOT.


By the end of a week full of sickness, way-too-early mornings, and various disappointments I was feeling burnt out, so Remy and I took our Sabbath rest a day early. Yesterday we did everything the easy way. I forgave myself if I gave him a toy without prompting for the word. If he gestured for his binky, I gave it to him. I didn't set the timer for mandatory floor play once the whole day. We watched Toy Story three times. Mom and Dad came over and I didn't make them coffee. I didn't do laundry or dishes. Instead, I lied on the couch and Remy, delighted at the sight, came and sat on my stomach.

Thankfully, I feel so much better today.  I think Remy feels better too. Today, the actual Sabbath, we are getting back on task - but it is nice to know that we can take a break and the world will keep spinning.

Friday, January 27, 2012


I started this week feeling so positive because of Remy's progress in imaginative play and attempts at naming things but by the end of the week (after his therapist cancelled twice due to illness) I am feeling overwhelmed. We have been trying to take him off the pacifier except in designated spots like his pack-n-play and crib and, while he is vocalizing more, he is also stimming a LOT more and seems much more sensitive to what should be minor distresses like being touched unexpectedly or getting snot on the back of his hand.  He is also more intolerant of me trying to engage him and share in his play. Sometimes I cheat and give him his binky but then I wonder if I am being flexible or if I am making things worse. Heck, I think I am being flexible. As his Mom, I know when he has had too much and at the point learning is not happening anyway. Well, his therapist says she will be here Monday, Tuesday and Thursday next week so hopefully she can see what I am talking about and tell me what the heck to do!

Remy's Table

I got Remy a table and chair set this week. I love everything about it, except that it fell apart the first time I tried to move it. Yeah, the hardware was junk and when I lifted it the bottom completely dropped off, crashing into one of the chairs and knocking off some paint. So I need to go to Home Depot and buy some new hardware, but in the meantime the table top is sitting loose on the base and I lift from the bottom to move it. Remy doesn't mind. He loves the little benches and the roll out storage bin and the table is the perfect height for his vacuum cleaner!

Thursday, January 26, 2012

52 Week Challenge, Week 3 and Week 4

Week 3, An Item I Love. If this one looks familiar it's because last week I was really sick and was too tired exhausted to do the assignment and instead used a picture from last year. It's my great grandmother's coral necklace and I love it.

Week 4, Self Portrait. Sadists. Why does every photography project have to have a self portrait? I hate doing it. I tried to keep this as simple as possible. I took it at 7:30 am, no make-up, hadn't even brushed my hair yet. Found the lightest room in the house, held out the canon with the 50mm (thus the close-up) and snapped a bunch.  This was the one that managed to include my whole face (well, except a sliver of chin, but my chin is too big anyway.) Self portrait, done.

Wednesday, January 25, 2012

Piper and Tory

My two most intense cats.


Just wanted to give a shout out to the Kalanchoe. It's a popular flowering succulent that does well in arid climates.  I got this one at the grocery store for eight bucks and it has been flowering for well over two weeks, I've only had to water it once, and it is doing fine without a lot of sunlight. When it gets warmer outside I will pot it and put it out there and continue to enjoy it!

Tuesday, January 24, 2012

Snowy Morning on the Sheep Range

So I finally looked it up, the mountains that my apartment looks out on are called the Sheep Range. How perfect is that? Their highest peak is the Hayford Peak at 9,912 feet above sea level. I wonder if it is possible to see any of the range's namesakes, the desert bighorn sheep, through my telephoto lens!

Saturday, January 21, 2012

Remy Update

Yesterday we met with our service coordinator for the first time. She is going to be coming out once a week to provide "special instruction." I think that means to teach me how to work with Remy to reach our goals. But she is going to teach me by modeling with him, so he will still get a lot of one-on-one time with her. Yesterday she showed me how to push him without getting him to a point where he is too frustrated to learn. She recommends only prompting two or three times for the sign or the sound and then providing the object. She also introduced bubbles to his world and he loved it! She reworked the goals set up by the original service coordinator so now we are working on the starting sounds of his favorite toys (b-uh for ball, t-uh for train etc.) Once he can correctly identify three objects with three different starting sounds, mission accomplished and we formulate a new goal. She also asked me to email pictures representing his routine activities and favorite toys so she could make magnets that can be arranged as a schedule or that he can use to learn to ask for those things. Super excited about doing this!

Since last week we have made a little progress with the sign for "more." He has done it correctly with me a couple of times and I think he did it for her once as well. He still takes a lot of warming up to get to that point but he has definitely made progress. We also think he may officially have a real word (no, for real this time!) He is saying UH! now when he wants to be picked up and when he wants help putting his vacuum on the table (don't ask.) Even though it sounds similar to the noise he makes for letters and numbers it is definitely a command and not a label and he uses it appropriately - for example he doesn't say UH! when he wants to get down or when he wants a toy. He is also starting to make a noise that sounds like down, so we'll see if that is his second word, lol! (Poor Mommy and Daddy, not so good for our egos.)

So here is the official break down of services:

  • Special Instruction 1x week
  • BAT Consult 1x month
  • Instructional Aide 4x week
  • Speech Therapy 2x month
  • Team Meeting 1x every 6 weeks
In addition to that we also have the Autism Clinic to go through, which is going to consist of:
  • Bayley II-Scales of Infant and Toddler Development A one hour thirty minute evaluation that assesses four areas: sensorimotor, emotional and social, communication and language, and cognition.
  • ADOS-Autism Diagnostic Observation Schedule or the Transdisciplinary Play-Based Assessment If the Bayley determines a cognitive level over 15 months he will do the ADOS and if it is below 15 months it will be the play-based option.  They are designed to measure communication and social behavior and will also last about an hour and a half.  
  • Comprehensive Medical  Evaluation After reviewing all medical records and test results an Early Intervention pediatrician will evaluate him and determine the diagnosis. 
So that pretty much sums it up! I will let you know how it goes!

Thursday, January 19, 2012

Thursday Morning Sunrise

Being a mom can be a thankless job at times, but when I get to see a sunrise like this it is like God is putting a tenner in the mommy tip jar or something. Thank you God for turning tedious morning routines into a time for wonder!

Tuesday, January 17, 2012

Fun from YouTube

I haven't seen this version of Great Expectations but this excellent fanvid makes me want to! Glad to see Gillian Anderson is just as awesome as ever!

We watched the series finale of Sherlock last night. I can't believe another season is over already, it is the best thing on televsion. Here is a lovely finale inspired fanvid (featuring the long-suffering Molly.) (SPOILERS).

And finally, Remy's favorite. He is madly in love with these little gnomes and their Elton John soundtrack.

Monday, January 16, 2012

Monday Musings

  • The baby is sick again so I haven't gotten enough sleep and can not properly compose a thought. But that is not going to stop me from blogging because this blog is not that fancy.
  • My amazing mama came over today to watch Remy so I could go do the shopping all by myself. It was lovely and I was slooooow. 
  • I am pretty sure I rock because in addition to grocery shopping I somehow also managed to vacuum and sweep, do laundry and dishes, get the mail, spend a bunch of time playing with  the buddy, turn on my husband's computer, locate files, and copy them onto my mom's flash drive. And this is a MONDAY. 
  • Ross and I are totally enjoying Downton Abbey on PBS. 
  • On Netflix, Ross is enjoying Flashpoint. Remy is enjoying Gnomeo & Juliet. I am tentatively checking out Portlandia. (Some of it is funny.)  
  • I need to make an appointment for an eye exam. I've needed to for a year but suddenly I feel like if I was wearing glasses with the right prescription somehow it would make everything easier. I plan to fully enjoy this delusion until I get my new glasses and my problems do not magically go away.  
  • I love reminding myself that this is the heart of winter and it is going to get nicer and nicer from here because, honestly, this ain't bad.  
  • Remy is 20 months old. The gap between him and the other kids in his nursery and my online mommy group is showing a lot more now than it did just three months ago. I am so eager to get things really moving with EI. Not in an intense tiger-mom kind of way, just in a help me,  I am in over my head kind of way. 
  • My husband just walked in with McDonald's. Peace out, yo. 

Thursday, January 12, 2012

Remy Update

We had our meeting with the nutritionist and the behavioral assessment this morning. The nutritionist said that since Remy has been on the same trajectory with his weight and height for over a year that means he is getting enough calories, and she was satisfied with the size of his meals, but she was concerned that he may have an iron deficiency and recommended testing and a supplement.  She also suggested that the reason we haven't been successful transitioning to table food was because a) I was more comfortable with feeding him food I know he likes and b) we were starting him on bland table foods and he is probably more interested in flavorful foods. I think she is right.  She recommended taking him to a buffet and letting him try a lot of things to see what he may like. She also recommended less snacking between meals.  So that was all very informative.

The behavior assessment which followed was pretty similar to the initial evaluation we did back in November. It was administered by a sweet woman named Tracy who Remy really seemed to like. We did the M-CHAT again (Modified Checklist for Autism in Toddlers) and he failed again, and she also did a behavioral assessment that has two columns, one with typical behaviors and one with autistic behaviors. He had half and half.  So she referred us to what they call the Autistm Clinic which means that we will do two more evaluations (different than the ones we've already done) and if he is still testing in the autistic range we will see a special pediatrician who will go over the results and diagnose him with an autism spectrum disorder, if warranted.  This will probably take one to two months.

Meanwhile we will also be doing our in-home therapy. She said our service coordinator will be coming to the house every week, the BAT consultant (behavioral assessment team) will be coming out once a month, and the IA (instructional aide) will be coming four days a week!  Sometimes there is a wait before the IA begins coming but we will receive comp time for that wait, (for example since we are doing 4x a week, if it takes a month for the IA to start coming that would equal about 16 additional sessions owed to us.) Of course that is not super appealing when we are already doing 4 days a week and I would rather the sessions just start as soon as possible - like yesterday.  

When I brought up ABA (Applied Behavior Analysis) and Rethink Autism (an internet based subscription services that provides resources and training material for parents and therapists) she said she loves ABA and that starting the Rethink Autism curriculum at home while we wait is a great idea. She said whatever we start working on at home and think works for Remy the therapist will try to implement when they start coming, so no need to wait. Our service coordinator was MIA (a whole other story, grumble-grumble) but Tracy assured us she would talk to her later today and that she would be calling us. (That will be a first. Just saying.) 

So that is where everything is at right now. Ross was with me for this visit, which was good because the two of us come at this with our own unique perspectives and attitudes and the more information he can get directly from the mouths of the experts the better we do as a team.  Wish me luck as I try to learn how to administer ABA myself and I will keep you posted when things get going with our in-home therapy.  

Monday, January 09, 2012

"What is autism exactly?"

I am continuing to try to learn as much as I can. There are a lot of books out there about autism (almost too many to choose from!) but I picked this book to read next solely because I was so impressed with the care and respect the author showed in his definition of autism:
The word autism is derived from the Greek word autos or "self," as in autonomous. It has been used to describe individuals who appear to be self-contained or who exist in their own little world, an inner realm seemingly set apart from others. These individuals have been clinically characterized as intentionally withdrawn and lacking in social reciprocity due to their communication difficulties or seeming disregard for social norms, as demonstrated through repetitive actions such as repeated hand flapping or infinitely spinning the wheel of a toy truck instead of rolling the truck along on all four tires.
From a physiological perspective, autism is a common neurological anomaly that may preclude the body from properly receiving signals transmitted by the brain, resulting in misfires and disconnects. Thus, people with autism may be unable to speak (or to speak reliably), to move as they would wish, or carry themselves with grace and complete agility. You've experienced autistic-like symptoms if you've ever transposed or stuttered your words unintentionally, or if you've awakened in the middle of the night to discover your arm is "asleep" from the elbow down and cannot be willed by your brain to move of its own accord.
Autism is a unique and different way of being, a natural variation of the human experience. Those who are autistic are often inherently gentle and exquisitely sensitive. They may perceive the world through a multifaceted prism more complicated and interesting than the view of those who are considered "typical." The autistic experience brings many gifts to appreciate and challenges to master...as one attempt to assimilate with the world at large. 

                                                                                   -William Stillman, The Autism Answer Book

Saturday's Moon

Saturday, January 07, 2012

Afternoon Nap

I'm sorry for posting another sleepy picture, I guess it is hibernation season around here!

Dancing With Max

Dancing with Max by Emily Colson is the best book I have read so far about parenting an autistic child. It's the first time in reading one of these books that the autistic child felt present in the narrative and not hidden behind the author-parent's fears and insecurities. In the last two books that I read like this the parents seemed either overly apologetic for their child or simply left a hole in the story where the autistic child should be.  Emily Colson, though frequently and comically mortified by some of the social blunders of her son, Max, presents him to the world with confidence and pride, faithful that he will be a blessing to others just as he has been a blessing to her. Despite her own relentless efforts, her son was never "cured", but she writes with peace and great joy about their journey together and the spiritual truths that she encounters along the way are ones that would benefit any parent, not just the parent of a special needs child.  In this book Ms. Colson managed, without sugar-coating the struggles, to calm some of my fears and make me laugh. I am very glad I read it.

Friday, January 06, 2012

A couple of sweet pictures from Ross

He took these through the mesh of the pack n play which is why they have that nice hazy look. I should let him handle the camera more often!

Thursday, January 05, 2012


Mom and I took Remy over to the Early Intervention offices yesterday.  He had his hearing exam first, he did great. No problem with the ears. Then we had the speech and language evaluation. She told us that she is on the autism evaluation team and that she can already see that Remy is going to fail the autism screening again at 24 months and that he will be diagnosed with autism. But she was pretty impressed with his joint attention (he came and stood in front of her and smiled at her while she sang twinkle twinkle little star, it was so sweet.)  She also seemed encouraged that he had started crawling and walking right on schedule, even a little early. She said we are going to qualify for a lot of services and it sounds like there will be multiple people coming out to the apartment on a weekly basis and that we may also be taking Remy in to private clinics for additional therapies. Meanwhile she wants us to focus on nursery rhymes and signing. Can do. We have been assigned a new service coordinator and I got to meet her briefly on our way out. She said she will talk to me more about things when I come in on the 12th to see the nutritionist and the BAT. So that is where things are at with the Remster.

Wednesday, January 04, 2012

52 Week Photo Challenge, Week 1

Week 1: A self portrait without me in it. I thought about arranging a still life but that is so time consuming and then I would actually have to stop and think about what I should include and I hate making choices. So instead I decided to just snap a shot of a corner of my world in its natural state. Here is my kitchen desk. (If I have time I may re-shoot this with a tripod so I can get all a bit clearer but I may not have time before the deadline at the end of the week.)

Monday, January 02, 2012

Remy Update

What a difference a month can make! December was a great month for Remy. He is doing a lot more mimicking (sighing, snoring, dancing), some naming (all letters of the alphabet are met with a confident "EH!"), some imaginative play (especially with his wooden pots and pans) and doing great eye contact and experience sharing (holding our hands and checking for our reactions to things.)  His fine motor skills and problem solving skills have improved too, he can now do the tool box puzzle all by himself.  Maybe most amazing to me is that he will now grunt and squawk at us when he wants something, which is a huge improvement over a month or so ago when he would remain silent or just whine and stomp around on his own, but not try to communicate to us about it.

The biggest change to what we have been doing was adding flash cards to our play time. I had resisted flash cards because it seemed pointless to me to start drilling him on vocab words or the alphabet when he didn't even know basics like "Mama" or "Remy" but I changed my mind when I read somewhere that children who love books usually love flash cards. Add to that his love of the  letters and I wondered why I hadn't realized what a great fit it would be earlier! We started with a set of ABCs and a set of  early words from Bright Kids. Unfortunately, they are so flimsy that I had to keep them out of reach most of the time. Then for Christmas Noah and Lauren got him the heavy duty Eric Carle flash cards and they are WONDERFUL! When he is not looking at the pictures or shouting "EH!" at the letters he is stacking them like blocks or sorting them into piles. He brings them to me again and again so that we can go through them together. For some reason it seems like more than all the repetitive labeling we were doing as we played with his toys, it is the cards that have shown him that things have names.  

We have a big day coming up this Wednesday. We are going back the Early Intervention offices for a hearing test and a speech and language evaluation. If he fails his hearing test this would provide a very welcome alternative to the autism explanation.  I am also really interested to find out how much language he may actually have because it's hard for me to guess, he is so inconsistent with it.  

This may all read kind of strangely. It is kind of awkward for me to write it. It's my effort to remain objective - some days I think I am too optimistic and some days I am too pessimistic, so "realistic" is kind of allusive.  But I don't feel as stressed as I was. I am really grateful that Remy is happy, healthy, funny, curious, adorable and sweet. All this "developmental" stuff is just kind of a side-bar in our life.