Such a big girl...and boy...

So, it is official, I really AM...officially...a big girl...yesterday I let Cooper ride the school bus...and I lived. OK, so it's not so much about me as it is him, but HE loved it - mama, on the other hand, wanted to jump in the car and chase the bus down, or at least quietly follow him to school. Seriously it was ALL I could do not to do that. And the ONLY reason that I didn't was that I was afraid he would see me and it would confuse him (before if he ever saw me at school he was pretty sure the school day was over and it was time for "why-we-go-home?")

The idea is that riding the bus will help him to be more independent from me. I don't LIKE that, but I do agree it's a good thing for him. It's a small bus and there are only a couple of other children who ride it AND there is an attendant (both she and the driver seem like very sweet people) AND I have both of their cell numbers! ALL the bus-bases are covered :)

The reports from both his teacher and the driver were that he did great. He came bouncing off the bus yesterday afternoon just chattering away, "school bus! skateboard! Read-a-book! I want school today!" I had been waiting on the front porch for like 45 minutes? You know, just in case they might be early... He had a great afternoon/evening and seemed no worse for the wear. I, on the other hand, think I added to my "worry lines" more than a little.

Oh, by the way, the adorable art at the top is by our precious friend Remy, I thought this was the perfect time to spotlight this amazing piece of art.

And just a few more from the cuteness files:

Last week I took him to school and we were waiting in the lobby area and someone said "hi" to him, so I prompted him to say "hi" and when they had walked on I asked "who was that?" no reply, "who did you see?" and he quickly and confidently sort of made up a name "Lurta" in the way that he does if he doesn't know the answer, but wants you to think he does. Then without missing a beat he breaks into "Cole, Cole, who do you see? I see Kelsey looking at me!..." and so on. We've read the butterflies book many, many times since we've been here, and it's so amazing, it's just as good the billionth time around as it was the first time!

When we were staying with my parents (the week between the times the movers picked up and delivered) any time my little nephew Tyler would visit Cooper would get all excited and basically attack him (Cooper LOVES him and Tyler is without a doubt the most patient child I have ever met). Cooper would pull on Tyler's shirt (or any number of other methods to get him in the floor) and try to get him to pretend to fall down. So, again, I started working on "hi" with him. And in no time he was saying "hi" THEN attacking, so I started working on "how are you?" and "let's play fall down!" which he didn't seem to get just at that point. But since then he's realized that "Har-YEWW?!" often follows "hi" and he's started using that a good bit. He's even added "do-ing" to it on occasion, and it's much less "har-YEWW" and more "haaar you doing?" This is expecially precious when we are tucking him in for nite-nite and he's breaking out all of his tricks to keep us around OR at 3 AM when he's decided it's time for us all to wake up for the day.

And a new development. In the past if we were upset with him because he made a "red choice" he didn't seem to realize that we were upset, or if he did he didn't know how to respond. NOW he "gets it" and if he perceives that we are unhappy with him because of something he's just done he looks kind of embarassed for half a second then he breaks out the "hi, hi, haaar you?"...so that's something to work with and kind of exciting news! :D

Greetings from "Ginia" (Virginia)

We are SO not in Alabama anymore! We had four inches of snow last weekend, big, fluffy, feather-like snowflakes all day on Saturday. Cooper kept going to the door, peeping out and reporting "It's snowing! Snowflake!" Grant took him out to play in it a bit which he seemed to enjoy, but it was bitter cold (at least by my standards) so they didn't stay out very long. And no, I didn't take this photo, I borrowed it from Ansel Adams, our snow - while beautiful - didn't look quite like this (and anyway I've just now unpacked my camera charger).

As most of you know this was sort of a sudden move, planned quickly and with much apprehension. The teachers and therapists at Mitchell's Place did their best with the short time that they had to prepare everything to make the transition easier for Cooper (and we love them for it!). And the school here in VA was very receptive to their suggestions so even thouh it seemed like all of our ducks were neatly in a row I admit I was preparing myself mentally/emotionally for a potentially significant regression. Just as we'd waited for that "one step back" a few months ago, which thankfully never happened, we've been waiting for something, I'm not sure what, just some sign of regression I guess. However, I'm happy to report that it's the last day of his second week of "big boy school" and we've seen no regression, no steps back, in fact just the opposite. He's been a complete champ about all of this! He's happy, he's making progress, and oddly so much more able to "go with the flow" (NOT something he's ever been known for).

The move itself went as smoothly as moving can go, all things considered. And then our first night in the new house was a bit of an adventure... Cooper fell off our bed and bonked his precious little heart shaped face on a dresser, blood everywhere, Grant grabbed him and after I took a quick look at the "owie" it was pretty clear we would be spending the next couple of hours at the hospital getting stitches. My train of thought was sort of "oh, OH, this needs stitches, oh it's bad, so much blood, wait, where is the hospital? where is the hospital? WHERE is the HOSPITAL?! 911"... So, yes that's right, I dialed 911 and explained to her that we had literally moved to the area that very day and what had happened and as I did this her partner dispatched an ambulance to our house. Now, it wasn't that I really thought we needed an ambulance, although he had his eyes closed and I couldn't check his pupils which did alarm me, we just didn't know where to go! (and in hindsight, I wouldn't have done anything any differently). The ambulance came and the paramedics were great with him and confirmed that yes, indeed, our FIRED UP, squirmy little man did, in fact, need stitches. At this point I still wasn't thinking they would expect him to RIDE in the ambulance (which I was sure would terrify him) but they DID, however after signing some papers they agreed to let us take him in. When we got out of the car he saw the ambulance in the driveway and got all excited "Am-lance! Am-lance!" Hmm, Ok, so much for my theory that he would be afraid of it. Things went smoothly at the ER and we were back at "Cooper's new blue house" by 9:30. The next day the DirecTV installers came and when Cooper saw their van pull up he got all excited "Am-lance! I want Am-lance!" (the photo is after we got home from the ER)

A few days later I took a tumble down the stairs, socks on stairs, not OK, lesson learned. All I remember was popping, snapping and cracking sounds all the way down. I felt so old crumpled at the foot of the stairs. Grant came running expecting to see bones sticking out (he was literally patting and checking me all over) fortunately nothing was broken, just a little whiplash. That was followed by a round of food poisoning the next day, which I totally could have down without, and I have to admit at that point I was thinking "SERIOUSLY?! What's NEXT?!" But we are all healed up now, Cooper's bandage came off last weekend and the cut looked maybe a little worse than I expected, but it's healed quite a bit over the last few days.

Since it HAS been SO LONG since I last posted, I thought I would quickly list some highlights from the cuteness files from the past several weeks, just to sort of catch up.

First of all, he's constantly talking about 'big boy' stuff, big boy school, big boy underwear, "It's BIG boy!"

The other day on the way to school..."Cooper, what's your NEW teacher's name?" "It's Whitton." "No, honey, Ms. Whitton WAS your teacher at MP, but you have a NEW teacher now, what's your NEW teacher's name? "It's Big Boy Whitton!" Ok, I'll give him that one, I can see the logic.

The next day. "Cooper, what's your NEW teacher's name?" "It's Keef!" (Mrs. Keith)

He's developed an appreciation for "physical comedy" - Chevy Chase falling off the roof on Christmas Vacation, simply HILARIOUS, he laughs so hard that I get cracked up "I want THAT part, I want house FALL!" Alvin and the chipmunks, when Theodore squirts breath freshener in Jason Lee's eyes and he falls back "I want THAT part! Funny Part!"

"It's Chrish-mush" (Christmas)

One random morning completely out of the BLUE "I want Sama!"

"It's contending" (pretending, and he usually IS pretending when he tells us this, so that's really exciting)

We stayed at a hotel for a couple of nights when we first came up to look for a house, it had an indoor pool (strategically planned by dad in an effort to make it a fun trip for Coop since water was his first love, Sama was the second). That went so well that we stayed there again while we were waiting on the movers. So now, should he get bored we hear "I want HO-tel!" and he says it with that coy-i know-i'm-not-gonna-get-it-but-i-think-I'll-throw-it-out-there-anyway grin :)

Last week he was playing with an "ABCs toy" - something he's done hundreds of times, and I hear it say "spell the word egg" and then I see him pushing buttons and I hear "E" "G" "G" "That's right! You're a genious!" (I didn't even know it said that) so, that's one word he knows how to spell. Won't eat one, but he can spell it" :)

And this one is really too hard to believe that I almost didn't list it... but here goes...

He and I were playing on Youtube. He wanted to "watch monsters" so I found a little clip of Monsters Inc, but he saw one off to the side he wanted to watch so I hesitantly clicked on it (you can't be too careful with that, right Whitton?) and it was the little girl "Boo" and a song starts playing in the background (seriously, who has time to make these little clips? much less bother to post them?) anyway, the song, it's a Journey song, (only a little ashamed that I know that) and Cooper hears it, perks up, points and says "It's JOURNEY!" ... Now, I know he's listened to music and various people's Ipods etc at school, but I just can't imagine that any of these young women had "don't stop believing" on their Ipod, now, it DID say "Journey" in small print in the lower left hand corner... I'm really not sure what to make of that :)

OK, enough, sorry for the epic.

To our friends and family in Birmingham, we love you and miss you and think of you often. Thank you for all that you've done for us, for Cooper. Happy Holidays and all the best to you! Stay in touch :)

xoxo

2 steps forward and HOLDING

Over the past couple of months we have seen amazing progress in so many of Cooper’s problem areas. So much so that I’ve been afraid to write about it, it seems so very “too good to be true” – and as many autism parents will tell you, if you notice significant improvement don’t get too attached to it, it could be temporary and often, very often, it’s 2 steps forward, one step back. We’ve seen this with Cooper in the past, so we’ve been waiting for that one step back. So far we haven’t seen it and what I’ve finally mustered up the courage to do is to share our two steps forward. If, as it turns out, we do take one step back, I’ll share that too – it’s the only way to truly paint the whole picture.

Remember back in mid-July during summer break, the trauma and heartbreak we had while driving around looking at houses…"this one!” and “I want THAT one!” well, just two weeks later we found ourselves driving around again in a neighborhood and he was saying “why-we go in houses?” and “I want go in houses.” We think “why-we” is “why don’t we” because he says it to me a lot in the afternoons “why-we go paint!” The difference was so remarkable I don’t think I would have realized or even believed had I not written about it during the break. And perhaps an even bigger change…he didn’t get upset when we didn’t go a-knockin’ on these stranger’s doors!

We've also noticed that he doesn’t get as frustrated with us for not understanding him or not realizing what he’s asking for right away. And he’s dealing with disappointment like a champ these days. Last weekend we went to the zoo and the whole way there he was asking for ‘water play’ and there have been many zoo visits where all we do is go directly to the little splash pad and he plays until he’s ready to leave. Once we got to the zoo, changed him into his swim trunks, he remembered the giant "foam bounce" thing they sometimes have set up near the water area… He goes running out to where it’s usually set up saying ‘I want foam!” Sure buddy... We get out there and there’s no foam bounce, just an empty, damp, mulchy disappointment. I freeze, I’m expecting a melt-down “uh oh buddy, it’s not here” he stands there for a few seconds looking for it then turns to us and signs and says “all done!” – not only was he ready to change out of his swim trunks and be all done ‘water play’ he was all done zoo. But with no frustration or disappointment, just completely matter-of-fact! Yay champ!

Over all he is just so much more ‘with us” these days. I hear “I wan snuggle mama” at least once a day – remember it was about this time last year before he’d ever addressed me as mama, or anything at all for that matter! During “down time” he now sits in our laps “wah-sy lap!” (want to sit in lap) or closely beside us, often leaning over against us. He doesn’t resist holding our hand in the parking lot the way he did just a few months ago. He points at us whenever we are sitting near each other, “kiss daddy!” when we play dumb he says “mama kiss daddy!” or “tickle mama!” He’s just so much more “in our world” and continues to amaze us daily.

A couple of days ago Grant tried (as he often does) to play catch with Cooper, there was the usual 2-3 times back and forth and then surprisingly Cooper kept going! Grant was a bit surprised and immediately praised him “Good job buddy!” and sort of jokingly as a side to me “I’ve been waiting five years for this!” Cooper keeps playing and begins to add words to what he’s doing! APPROPRIATE words! “Here comes!” and “Catch it!” I was pretty shocked at what I was hearing and seeing and I turn to look at Grant expecting to see the same disbelief on his face but instead there is my dear sweet hubby with tears streaming down his face…he was playing catch with his son for the first time ever. It was truly a priceless moment.

I don’t want to give the impression that he’s so improved that he’s now reading Proust and writing essays, or even doing most of the things that his neurotypical peers are able to do at age 5, but he has most certainly taken two giant steps forward and it just makes our hearts sing.

Dad's turn in the studio

Cooper simply adores these little over-priced paint sets from the book store. There are two little figurines, 6 little pots of paint and a plastic paint brush in the box, that’s it, but for Cooper it is the bee’s knees... So last weekend we went to the ‘train store’ (book store, they have a train table in the children’s section) and almost immediately Cooper zoned in on one of these little paint sets...It quickly became clear that we weren't leaving the store without it. He held this treasure in his lap and inspected the contents through the cellophane window all the way home. It’s interesting to me, when he paints something 3D it’s a completely different scene. He’s so very deliberate and so careful but in the past, with me, there’s always been the same proclivity to put his hands in the tiny pots of paint as well. Last weekend when get got home from the bookstore I had to return a phone call so Grant took him up to the studio to get started. When I got up there I was really surprised by what I found. In a very painterly fashion Cooper was meticulously and cautiously painting his dinosaur, he was using the brush so delicately, very serious about it and when he was ready to change colors he would look at Grant and request the color he wanted (one color at a time, this was the rule that Grant had quickly established). There was no manic color mixing or constant requesting for different colors. He stayed completely focused and calm; there was no temptation to put his “poin-tah” in the paint, no requests to do so, no sleight of hand to distract us while he quickly gets his paint-on-skin fix. I think the difference this time actually had less to do with the 3D figure he was painting and a lot more to do with knowing his limitations with dad. It was a pretty neat experience for all of us i think.

angels

Cooper’s aunt recently suggested that Cooper and I make some more 'angels' together and since he's all about painting with his whole hands this seems the perfect time to do it. We have made these together in the past as gifts for special folks in our lives, but I’ve never considered selling them until my SIL suggested it.

I’ve given this a lot of thought as these are “special” to me and decided that if offering them for sale they should be done in a ‘special’ way. So, rather than simply numbering each one I’ve decided to give each of them their own name – and we are naming each one to honor a special angel (teacher/therapist) who has guarded and guided and helped Cooper on his journey. Now, you may read some of the names and think “hmm, ok, odd” but what I’ve done is use the name that HE calls them, ex Kessy is Kelsey, Cole – while not an unusual name is actually Nicole, Lolilan is Lorianne, and Lala-lee is Natalie, you get the idea. So far I have about 25 names and as each angel is completed, we are randomly naming them from a slip of paper he pulls from a ‘hat’.
The process is simple and fun, I do a background – have that dried and ready for him when he enters the studio. He, of course, loves making the handprint wings and (with a little help) thumbprint heads, and then I “hand over hand” with him to paint the angel’s gown, which is kind of a transparent copper color just in case 'we' get a little too enthusiastic or overzealous.
Here is his Etsy site! COOPERandMOM.etsy.com Enjoy!! :)

hot wax!

Last week I started playing around with encaustics, something I've been curious about for years, but haven't had the time or energy to explore. I'm hooked, completely in love - I love the smell, the warmth, the feel, something about it takes me away and back to something familiar although I can't pinpoint what it is. We're quite a ways away from being able to share this experience with Cooper, even I have to draw the line at molten wax and a 5 year old, but we will get there :)

2 steps forward, 2 steps back, rinse and repeat

Lately I have been thinking about how Cooper is doing in the “stu-B-yo” and questioning if we have taken a few steps back. In the past few weeks he has gone from:

1. holding a brush and painting or making numbers to

2. quickly placating me by using the brush for 30-45 seconds before finger painting to

3. putting his entire hand in the paint then “hand painting” on the canvas to
4. just using the paint as lotion - canvas completely ignored…

I was beginning to feel like my best laid plans had been thwarted (again!) by a small but determined boy, then I reminded myself of the goal of this project - have fun, spend time together, explore and create; I have decided my new plan will be to just “go with it” - and we are meeting those goals in spades!

This time together has also sort of naturally evolved into an opportunity to work on speech and language skills. When he's in the studio he is much calmer, focused and able to stay in one spot for a surprising length of time - most days. Earlier this week he was not only asking for specific colors but showing me on the canvas exactly where he wanted me to put the paint! Because it's something that he loves doing it makes him work a little harder to communicate his wants to me.

As far as the first 12 canvases go, you're looking at two of them! he has covered every inch of those at least 2x over, easy to do when you paint with your entire hand! So, it's time for my next layer. My intent is for us to keep working and layering together and hopefully I will know when they are finished. Although these are still "in progress" they are getting close to completion.

irony, finger paint and humble pie

So as I was writing the last post I was thinking all along about how much “better” Cooper was doing, in almost every area. I think I painted a very “rosy” picture and admittedly I was feeling pretty good about everything. Then just to keep things in check…a week long summer break happened…

I simply cannot stress how important routine is to our little man, and throwing in a whole week without school is usually a disaster. Armed with this knowledge I had planned a busy week for the two of us. A day trip to visit my family in north Alabama, a quick trip down to the beach to visit friends, a play date with a friend from school, maybe the zoo, maybe the barn and lots of time in the studio. I had been planning and prepping for a few weeks (child-proofing my studio was no easy task) and with all my plans lined up I was feeling pretty confident we were going to have a great week.

The week before the break Cooper decided (for reasons we still haven’t figured out) that his car seat would no longer be his standard MO for travel. He had pulled these Houdini-like stunts in the past, “click- click-shimmy” and the next thing I know there is a small boy standing next to me as I’m driving down the interstate! Long story short, scolding, reasoning, bribing, punishing nothing would work- and none of the angel locks or guards worked to deter him either. The thought of a 4-5 hour drive to the beach was just too much -- the 20 minute drive to school was taking closer to 45 minutes with the multiple stops to put him back in his seat. So the beach trip was cancelled… Defeated, Grant and I changed out the safety throne Britax car seats and settled for simple boosters with a seatbelt guard – it’s not ideal but safer than pulling over every 5 minutes. Crisis averted.

Monday, the first day of our “well planned week” he had a fever, no other symptoms, so our trip to visit my parents was postponed. It stormed that day so any outside activities were also off the table. Long story short, we had four “black and white” days and one really good day, the day we spent with my family. By “black and white” I mean there was no middle ground, either he was happy and engaged with me or he was violently melting down, and this up and down cycle was rapid and unpredictable. Despite all of that, we were somehow able to spend a good amount of time in the studio, although it was completely “on his terms” no “making numbers” and only using the brush for a minute or two each time. After placating me with the brush he would look at me with is tiny finger poised over a gooey puddle of paint and sweetly ask ”Poin-tah?” (Think Aussie accent, compliments of the wiggles). “Yes buddy, you can use your pointer” this is supposed to be fun after all. The result is actually quite pretty, big sweeping areas of translucent color, layered over some collage work I did earlier. We’re working on 12 different canvases so there’s lots of surface to keep him busy.

On Thursday morning my friend Tracy dropped off a book she thought I needed to read. I wasn’t home when she came by – I was out driving Cooper around looking at houses…I’m not sure what it is about driving through neighborhoods he so enjoys, but it keeps him happy and entertained, that is until he finds the house he’s looking for. “This one!” he shouts from the backseat, pointing at some random house. Then, as we pass the random house, his heart breaks followed by tears, more pointing, more shouting “that one! I want that one!” He just certain there’s someone in there who wants us to stop in and visit. Anyway, the book, “The Horse Boy” amazing, amazing story, she was right; I did need to read it. Thank you Tracy – it couldn’t have come at a better time.

So, after a fairly rocky week – which we survived with only minor scratches and a few small bruises – the weekend rolled around and dad was home (as he should be on a non-school day!) and we were finally back in our routine. He had a perfect weekend with lots of language, easily engaged, happy, snuggly and sweet and just for fun – lots of finger painting.

our story

At 2 years and 4 months Cooper was diagnosed with PDD-NOS. Although I was in complete denial for the weeks and months to follow, deep down I had known for a very long time. He was an exceptionally “good” baby, meeting all of his major milestones just inside the late end of “normal”, and even though I was a first time mom who had spent very little time around babies – I knew something was different. To this day I can’t explain how I knew, mother’s intuition I suppose.

When Cooper was around 18 months old, my husband, Grant, was deployed to aid in disaster relief operations for hurricanes Katrina and Rita. He was gone for 6 weeks. During that time Cooper began regressing, he started asking for “dada” all the time, I assumed he was just missing his daddy and didn’t realize until later that during that time he lost most, if not all, of his other words.

Cooper has been in weekly speech therapy since shortly after his 2nd birthday and weekly occupational therapy followed soon after. Desperate to feel like we had some control over this situation, biomedical therapies, diets, shots, supplements, listening therapy, chelation, and test after test after test followed. Despite all of that we were seeing very little progress. Two years ago, after 13 painful months on a waiting list we were able to get him into an amazing preschool designed specifically to meet the needs of children on the autism spectrum. Under the love and care of the wonderful teachers, therapists and staff there we have watched as he has blossomed.

Although he isn’t ‘conversational’ yet, he is now able to make requests to get his needs met. We certainly still have “days” but they are less severe, fewer, and farther between. At 5 years and 5 months Cooper is now “in our world.” It has been a hard fought battle and we still have a long way to go, but we are no longer ‘cautiously optimistic’ – simply optimistic.

Being a parent is hard; being a parent of a special needs child is hard to put into words. There are times of desperate isolation, when you’re just certain without a doubt that no one knows how you feel. There are times of overwhelming helplessness when you realize there is nothing in this world that you can do to take this “thing” out of your child’s life. There are moments when you feel yourself drowning in guilt although you know in your head there was nothing you could have done differently.

So I suppose my point in all of that is two-fold. First, to relate this back to art, art is truly therapeutic for me; my work has helped me through some very hard times and on many occasions helped ward them off. I know how truly blessed I am that my outlet/therapy is also my job and a big part of who I am. There is some sort of synergy there, most of my work, in one way or another, is inspired by Cooper and his struggles and victories, by the way he sees and interprets his world, by funny things he does or says, by his boldness and fearlessness to simply be just who he is without filter.

Secondly and more importantly – is to give some honest insight and to promote autism awareness. If you have concerns about your own child, force your pediatrician to hear your concerns, ask again and again, don’t let your concerns be dismissed – trust your gut. The earlier intervention begins, the better the outcome, I wish I had pushed harder. If you know a parent of a child on the spectrum, especially a newly diagnosed child, whether they realize it now or not, that family is overwhelmed and more than likely is grieving. If you can, offer a helping hand, any small gesture, odds are it will make a big difference. And if you see a parent struggling with a screaming red-faced child, perhaps sitting in the floor at Target, kneel down – look her in the eye and without fear ask her what you can do to help. I can smile about this now, partly because it hasn’t happened in a while, but mostly because I can still see the faces of all the kind souls who have done that for me.

As a result of Cooper’s disability I have learned a great deal about the world and the unlimited kindness out there. I have also learned a lot about myself. He has taught me patience and to such a degree I never dreamed possible. He has brought our family closer together. His needs have brought many wonderful, knowledgeable, kind and caring “angels” into our lives. He has made me open my eyes and heart to people and ‘things’ I might not have otherwise. And without a doubt, he is an overwhelmingly inspirational force.

My goal with this project, other than having fun with my son, is to celebrate his strengths and accomplishments while challenging myself as we work together within his abilities to make a beautiful body of artwork.