A few weeks ago, we had a wonderful (albeit, brief) visit from my mom, grandpa, aunt, uncle and cousin. It was a fun-filled afternoon and we were all so very sad to see them leave. Here are a few photos of our adventures. The boys are thrilled with the box of beans that Mimi brought for them. Oh, how fun to throw beans EVERYWHERE! Dex thinks beans feel funny on his toes. What fun! Dex and Great Grandpa, sharing a good cuddle and lots of giggles. Jax gets a good ol' fashioned horsey ride from Great Grandpa! Cuz Sonja helps Jaxon explore more than just the keys on the piano. :)
We spent a long day in the ER yesterday, as Dex had his first battle with Reactive Airway Disease. Jax has experienced this several times, already, and we can generally keep things under control with his nebulizer. With Dex, though, it got a little scary... so we ended up in the ER and Dex wound up with some predisone and his own prescription of albuterol.
Of course, just as we thought that we had turned a corner, Jax woke up last night in the midst of his own respiratory challenges. Night #2 of sleeplessness for Mom and Dad, involving neb treatments, tylenol and good old fashioned cuddling. Today, I have the supreme pleasure of administering dual doses of nebs, fever reducers and prednisone... none of which are met with smiles of delight. The other odd side effect of the neb treatments is a bizarre restlessness/hyperactivity that means the boys have literally been bouncing off the walls all day. Entertaining? Yes. But, I'm definitely ready for my two boys to be back to normal.
These breathing difficulties can be so scary for us. It's odd. Growing up, I never remember children dealing with so many respiratory issues. No one I knew had to have a nebulizer at home. Dex and Jax aren't even two and we've been to the ER/doc's office a handful of times, already, for these sorts of problems. Very scary. The strangest thing is that I'm not the only mom I know who has to keep the nebulizer handy. This seems to be more and more common among our children... much like autism. Hmm... What's changed? Environment? Foods? Milk? Overadminstering antibiotics? Vaccines? Everyone seems to have a different theory and no one seems to agree... but I think our children are telling us that something's going on.
NOW, just to remind you how cute my little sickies are...
Dex, showing off the remains of his first shiner and Jax, so pleased to be holding TWO woobies.
Thanks to Mimi and Granddaddy, the boys have two little chairs to sit on. They're favorite place to keep them is right in front of the piano bench... and it's become a sort of book station for them. I was lucky enough to catch them "reading" a few weeks ago. Dex is on the left, Jax is on the right.
Today was Jax's first day at his ASD (autism spectrum disorders) class. As part of the Early Intervention program, through the county, he'll be attending this class two mornings a week. They offered us the possibility of having Jax ride a bus to and from the school, but I just couldn't cope with the idea of sending my tiny little 20 month old boy on a big yellow school bus. It was hard enough buying him his first backpack... he's just too little for a backpack!
There are going to be 4-6 children in the classroom, all under the age of 3. I'm hoping this will be good for him. I have to admit, I have plenty of reservations. I'd prefer that he be getting one-on-one therapy... but, as the waiting lists seem to be incredibly long, I'm hoping this is better than nothing. I just hope he gets the attention he needs. I have been so intentional about keeping him engaged... and, as a mother, it's hard to imagine anyone else being as devoted or attentive to him as I would be. Aagh!
We had a rough day today. Jax was in Jaxon-land from the moment he woke up this morning, which made it even harder for me to leave him in his classroom. I kept trying to get him to look at me before Dex and I left, but to no avail. It's odd. Even though he won't physically acknowledge my presence, at times, I KNOW he's aware of me. Just as Dex and I left the room, I heard him start screaming. He knew I was gone. I cried for the next 15 minutes. I can't imagine what Dex thought of the whole thing.
For the rest of the morning, I got to truly enjoy being with Dexter. We ran several errands in a row (unheard of with the two boys together!) and even enjoyed a brief respite at a local coffee shop. Dex ran from table to table saying "Hi!" to everyone he saw... then, after thoroughly greeting everyone, sat with Mommy while he ate a blueberry muffin. I spent the next ten minutes answering his many "Wazzat?" queries. At this point, I started to cry... again. I felt so guilty giving Dexter all of this attention when I knew I wouldn't be able to do the same for Jax. To make matters worse (and even more complicated), I was truly enjoying being with Dex. It was so easy. I wasn't frantically trying to chase after two busy bodies... I wasn't always saving a little guy from his next inevitably bump or bruise. It was just, so... easy. I'm not sure if it's because it was Dex or because it was just one of the boys (or, more likely, a combination of the two)... but, that also made me feel guilty. Then, I started grieving the fact that this alert little boy in front of me was giving me eskimo kisses and asking so many questions... when all morning long I hadn't even been able to get his brother to LOOK at me. How are we going to deal with the fact that these two little boys are developing so differently when we want so much for the both of them? Sometimes, it all just hurts a little too much.
Today, my fear got the better of me.
When I picked Jaxon up, his teacher encouragingly told me that she didn't anticipate his being in the class for long... that I had every reason to be hopeful for his future. I hope she's right. In the meantime, we're still trying to get Jaxon added to more waiting lists for behavioral and speech therapy... still trying to keep him engaged and celebrating every little triumph.... and still loving all of Dexter's eskimo kisses.
Dexter's new trick involves removing his diaper... as fast and as frequently as possible. The best is when we go in to check on him while he's sleeping and find a bare little bootie! We've become quite skilled at rediapering him while he's asleep. :) Of course, he also thinks that a quick escape after a diaper change is about the funniest thing in the world. Is this a sign that we need to start thinking about potty training? I don't think I'm ready for that adventure yet!
Jaxon's new trick is his passion for artwork. No longer will he just scribble randomly on a page. No. He needs shapes, faces and pictures to color. When the shapes run out, I know instantly, because I'll hear a little voice saying, "Mah? Mah? Mah?" (his version of MORE) and he'll be waving his crayon in the air, frantically waiting for me to draw a few more shapes for him to color. This seriously cracks me up.
We took Jax to see an pediatric neuropsychologist at the U, yesterday. She was wonderful. After spending several hours with Jax, she confirmed what our Early Intervention program had told us, diagnosing him as being on the autism spectrum (why can I not bring myself to say that he HAS autism or IS autistic?). More specifically, he received a diagnosis of PDD-NOS, which stands for Pervasive Development Delay Not Otherwise Specified. Some people call this mild autism, some people call it pre-autism... and, as with every step we've taken along this journey, with this answer we now have so many more questions.
The doctor we met with said she wanted us to be cautiously optimistic. Jaxon is SO young and seems to be responding really well to what few interventions we've been implementing. These are really good things. At this point, she said, with early help, this could be something that could completely disappear by the time he starts school. Of course, she also said that there are no guarantees and that children diagnosed with PDD-NOS can get better, get worse or stay the same. No one knows what course any individual child will follow.
Where's a magic 8 ball when you need one?
There were a few really wonderful things that happened in the appointment. Jax was pointing, making requests, initiating eye contact and making vocalizations. A few weeks ago, these behaviors were basically non-existant. There were also some difficult things to see. In the course of three hours, Jax only responded to his name once (and I suspect it had more to do with the toy the doctor was holding than the fact that his name had been said). He also didn't reciprocate eye contact or smiles. At the end of the obervation period, the doctor asked D.R. and me to try to elicit a smile or a glance... but to no avail. I can't even begin to describe how disheartening (and, well, painful) it is as a mother to be holding my face mere inches away from my son's and not be able to get him to look at me or smile back at me. It's not as though Jaxon never looks at us..and he smiles all the time... it just has to be on his terms. If I'm holding something he wants or if I'm preparing to tickle him, he'll look right at me and will giggle away. Apparently, given his diagnosis, these are strengths and we'll use them to keep trying to pull him down the road to recovery.
At this point, we are trying everything we can to get Jax started on early intervention therapy. It looks like he'll be starting to attend an autism classroom several mornings each week. I see this as a step in the right direction. In this setting, he'll be working on improving language skills/understanding and developing social skills. What I'd really like is for Jaxon to be receiving one-on-one behavioral therapy and speech therapy. These are things we're pursuing... so I'm hoping we'll find some open doors sometime soon.
In the meantime, I have to get Jax his own backpack!
Thanks to everyone for the continued prayers and support...
The boys will eat anything. Seriously. They may not eat it when it's offered to them (we've had our first real strong-willed food refusals in the past few days), but they will surely scavenge for leftovers... and eat anything (yes, ANYTHING) they find. In general, their hearty appetites and adventurous palettes have proven to come in quite handy, as they'll basically eat whatever D.R. and I are eating. Meal-planning has never been complicated for our little family. Today, however, my two little flavor-seekers outdid themselves.
They beg. Constantly. If they see me eating something, they MUST have a bite. This is something I'm relatively used to, so I'm equally accustomed to handing them little tid-bits to please my adoring public and prevent any figurative tomatoes from being hurled my way. There are exceptions to my generous tid-bit sharing, however. My morning coffee, for example, has ALWAYS been off-limits. What kind of a mom would give her toddlers coffee, after all? Well, this morning, I had had enough of the begging. We drink coffee for more than just the flavor, after all. There's a ritual involved. There's a few moments where you (as the coffee drinker) are allowed to breathe slowly and remove yourself from the chaos encircling you. How would I EVER make it through our feat-filled days without my coffee?!
This morning, after trying desperately to tune-out the begging boys at my knees, I decided there was only one thing to do. Let them sample the iced espresso and that will be the end of it... after all, what 20 month-old would enjoy the bitter (yet, oh-so-smooth) jolt of a dark espresso blend? Why hadn't I thought of this earlier? I bent down to give Dex a sip. He tasted my coffee cautiously, then jumped back. Ah-ha! Jax was next in line. After a quick sip, he too jumped back. THIS was a new taste, after all. HOWEVER, rather than repelling the boys, my tactic had the reverse effect. They wanted more. As a result, I did not savor my coffee this morning... no, no... it was poured down my throat much faster than it ought to have been. So sad. So very sad.
What does this mean for tomorrow morning? Will I have to become a closet coffee drinker?
I have been struggling with what to post, as of late. Do I discuss the ins and outs of our crash course in autism? Do I avoid it altogether and fill the blog with adorable twin moments (goodness knows, there are millions)? How do you go about subtly incorporating a change like this into your life? It's not like anything has really changed. Jax is still Jax... But, one little word can change so much. What before got written off as quirky behavior, intense focus or indepedence is now being constantly scrutinized, overanalyzed and recorded. Aagh!
This afternoon, after feeding the boys lunch, I sat down on the floor next to them, hoping to engage them (specifically, Jaxon) in a game of some sort. Instead, however, I became the silent observer to one of the most adorable moments the boys have ever shared. They played together (yes, TOGETHER... not side-by-side... but, together!) for at least 20 minutes. There was peek-a-boo, there was finger grabbing, there was filling the wagon of blocks and emptying the wagon of blocks, and there was a tremendous amount of giggling. Seriously, I was almost in tears. Yesterday, I could hardly get Jaxon to look at me, let alone interact with his adoring brother... and, then, for a full 20 minutes he was engaged and playing delightfully with Dexter. And now, I have to wonder if when he wakes up from his nap he'll be engaged Jaxon or if he'll be in Jaxon-land... population ONE. Do moments like these mean that the constant attention and interaction we've been giving him are having benefits? Or, are these just fleeting moments that need to be savored? Does anyone have the answer?
What a rambling post this is becoming! Anyway, I'll highlight another one of these remarkable Jax moments, by posting a very short video capturing his new game of "peek-a-boo, then pretend to cry." I see this sort of pretend play as a HUGE strength. Keep it up, Jax!
This morning, just for fun, I asked each of the boys what they were thinking about. Dex looked right at me and said, "Daddy." Both of the boys will say "Daddy," now, though it sounds more like "Da-eeee." Yesterday, while D.R. was at work, I heard my mom open a cupboard in the other room. Dex ran to the top of the stairs and shouted, "Da-eeeeeeee!!!!!" When Daddy didn't come up the stairs, he shimmied his way down the stairs, stood by the front door and shouted, "Da-eeeee!!!" When Daddy didn't open the door, he ran to the window, peered down to the sidewalk below and shouted, "Da-eeeee!!!" It was absolutely precious. Jax has also had his "Daddy" moments. A few nights ago, he woke up in the middle of the night crying, so I brought him into our room to take his temp and help him calm down. As he was laying down next to me, he turned his head to the side, and when he saw D.R. beside him, he reached over to touch D.R.'s face and whispered, "Da-eee." I love that. Of course, I'm still waiting for a "Mama".... :) THAT will be a moment worth waiting for!
When I asked Jax what he was thinking about, he lovingly put his woobie in his mouth and sweetly looked away. One of these days, he'll be able to tell me what's on his mind! In the meantime, I'll have to interpret his silence as, "Mom, I'm trying to enjoy this nice little moment with my woobie. There's no need to interrupt." :)
Both of the boys are huge fans of hiding in the kitchen and popping out to surprise us. Of course, upon their sudden arrival, they expect no less than a standing ovation with much cheering and clapping. We are always more than happy to play along! I love this game, as the looks on their faces are priceless and it's one of the few games that can be played with Mommy and/or Daddy sitting comfortably in the other room. Today, as they were running to and from the kitchen, Jax decided he would create a new rendition of the game. Upon prancing out from the kitchen, he would smile proudly during his applause and then put his face in his hands and pretend to cry. At first, we thought maybe he was really crying, but when I went over to give him a hug, he looked right at me and giggled. This was a new game! He repeated this rendition at least a dozen times, each time with his crying and giggling getting more and more dramatic. I have to view this as a HUGE positive, because he was clearly PRETENDING. This is something that children on the spectrum do not always do... so, yipee!!
I'm also attaching a short video of the boys playing with one of our close friends. They both LOVE being silly and were thrilled to have a new playmate! Jax is the first little giggler, shaking his head back and forth (he loves to do this when he's excited) and Dex is our second little giggler... going in for a last-minute hug.
And, one last little clip. Dex will now say "Moo moo." Yes, this is a little thing, but I think it's too cute! You also get a chance to see the boys sorting our drawers for us. How thoughtful.
I've hesitated to post about some of the tougher days, as I've been raised with the mantra, "If you don't have something nice to say..." But, sometimes you just have to be brutally honest. As I'm typing this, I imagine Jax reading this one day and laughing, "That was me?! No way!" Oh, let's hope that's a future that will be his...
My mom is here this week, helping me sort through a maze of information/paperwork/phone-calls/decision-making. With D.R.'s intense work schedule and the boys' active lifestyle (what busy-bodies I have!), it's so hard to get through these time-consuming tasks. Mom (and Dad, who was here yesterday) has been great about watching the rascals while I go about the business of filling in forms, soaking up information, being put on hold (today, I enjoyed a full 19 minutes on hold before I was transferred to voicemail!!! How aggravating!) and trying to get a foot in the door anywhere we can. I can't imagine how people do this alone. Why does it take situations like this to suddenly have an overwhelming empathy for other folks' situations in life? Aagh. Anyway...
I thought it would be great fun to take advantage of Mom being here to take the boys out for a little get-away. We went to an indoor conservatory, where I imagined the boys blissfully looking at plants, flowers and fountains. As it turns out, we experienced a dual-meltdown five minutes into our little adventure. I can't imagine what I would have done if I had been alone. It took us a full 15 minutes to squirm our way through the onslaught of strollers and other families walking through the conservatory. All the while, we had two little boys putting on quite a show. Dex was calmed relatively easily (I'm fairly certain his meltdown was the result of one too many "nos"). Jax, however, was inconsolable. He screamed (yes, screamed) the entire time. He's getting big enough, that I had difficulty carrying him. It was nearly impossible for me to get him into his carseat and he continued to scream the entire drive home. It wasn't until we walked in the door and he was able to clutch his beloved Woobie that the calm FINALLY began setting in.
Moments like this make me look at the bazillion other parents out and about with their happy little-ones with a bit of sadness. It looks so easy for everyone else, sometimes! What shall I do? Should I consider permanent lock-down mode? A sign to put over the stroller, saying, "No, my child just ISN'T able to calm down like yours is. Deal with it!" Somehow, I don't think that would help. I do have to say, one father was sweet enough to tell us that he'd been there, too. At least that's better than the death-gaze that a parent of a screaming toddler (not to mention, two of them!) so often gets from the anonymous public.
So, what's the purpose of this post? Did I just need to complain? Maybe. Or, maybe I like the idea of recording one of our more challenging moments, so that one day we can read this and smile at how far we've come, how much has changed and how all our fears of an uncertain future for a little boy (okay, TWO little boys) we love SO much were completely needless. In the meantime, if you see a parent with a screaming toddler, I recommend a smile, a pat on the back or maybe even a hug.
Hee hee... how could I resist? The boys' hair got SO long again, I just had to try clips and pony-tails before we cut it all off! Dex was not at all pleased with the bobby pin in his hair, but neither of the boys seemed to mind the pig-tails. (They were probably just so relieved to have the hair out of their eyes!!) We gave Jax two pony-tails and Dex one. :) Daddy cut their hair this time and he did a fantastic job! I'll post photos soon.
The boys are thrilled with the box of beans that Mimi brought for them. Oh, how fun to throw beans EVERYWHERE!
Dex thinks beans feel funny on his toes. What fun!
Dex and Great Grandpa, sharing a good cuddle and lots of giggles.
Jax gets a good ol' fashioned horsey ride from Great Grandpa!
Cuz Sonja helps Jaxon explore more than just the keys on the piano. :)
