Tuesday, July 27, 2010

Stuffed Zucchini Stacks

It's getting to be the time of year when my blog is filled with favorite recipes for locally and home grown produce. So if it seems like I'm posting a lot about food, it's just because I'm in the kitchen a lot during these months!

This past weekend, Daryl went to visit some friends. I'm insanely jealous of their garden. They have the kind of garden that I dream of putting within mine and Daryl's white picket fence someday (when we get that ever elusive white picket fence, that is!) They sent Daryl back to me carrying delicious homemade pickles, onions, and these gigantic beasts:

Yes, those my friends, are real zucchini. Just to give a comparison of the size, I placed my chef's knife next to the larger one.
I personally love zucchini. Our friends could not have picked a better veggie to send home with Daryl. Back in my days of vegetarianism, it was as much a main staple in my diet as black beans and tofu. Stir fry, grilled, baked in bread... YUM! But with a zucchini this marvelous, and this huge, I wanted to make a main dish that the rest of the family (who are for the most part, carnivorous) would enjoy.

I turned to my old standby, Allrecipes.com and found a recipe for Baked Zucchini. But this was a recipe for those puny zucchini that you find in the grocery store, not this massively nutritious beauty that my friends summoned from the garden gods. A side dish at best. It needed some changes to make it a satisfying main course. This is what I came up with. But I have to be honest and tell you that I did not measure a dang thing. I just kept adding and mixing until it looked and tasted good! (if you spy a measuring cup on the counter in any pictures, be assured it is only there for posterity) So the measurements are estimated, and some might be a little vague. For this reason I didn't really put this into "recipe format."

I set the oven to preheat at 350 degrees F and put a large pot of salted water on to boil. I cut the zucchini into 1/2 inch slices

Then I cut two tomatoes that came from my garden box, into 1/4 inch slices. You can cut them thinner if you'd like less tomato, but I wouldn't go any thicker or the stacks might not bake through and the cheese will burn.
I cut the corn off of three cobs. These were previously cooked, leftover from a prior dinner.
In a bowl, I mixed 1 and 1/2 packages of cream cheese, a scoop of sour cream, and a scoop of plain yogurt. I would say "a scoop" is about 1/4-1/2 cup. I added the corn, chives and basil from our garden box, salt, and pepper. If I had dill, I would have used that instead of chives (I grew dill this year, and I picked it and dried it, and now it has disappeared. Same thing happened last year. I think someone keeps throwing it out on accident, as I'm the only one who uses dill around here) I mixed everything together until it looked like this:

When the water came to a boil, I placed the zucchini slices into the pot, covered, and boiled for 5 minutes.
When I took them out of the pot, I wish that I had placed them on a plate with a paper towel to remove excess water before placing them on the baking sheet. If I had, the zucchini probably would have stayed more firm through the baking process. I removed the zucchini from the water and placed them on a baking sheet, and brushed olive oil on the tops. I then spooned a generous amount of the cream cheese mixture on top of each slice.

Next, I put the tomato slices on, but I left two without tomatoes because Daryl's brother does not like them.

Then, to appease the meat eaters, I put deli slices on top of the tomatoes. I happened to have honey ham and bourbon chicken, so I made half of them with each.

Finally, I topped everything with co-jack cheese and placed them in the oven for twenty minutes at 350 F. After the twenty minutes, I decided they needed a little longer, and let them cook for an additional seven minutes, for a total cook time of 27 minutes.

When the cheese started to look a little brown and slightly crunchy (but still gooey- not burnt.. you know the way I mean!) I knew they were done.

I removed them from the oven and let the baking sheet stand on cooling racks for five minutes before servingAnd the results:
Even the pickiest veggie eaters in the family came back for seconds! I served them with banana-blueberry-nut quick bread (recipe to come soon) and black-berry applesauce.

Saturday, July 24, 2010

Splish Splash!

In the early spring, Jonah was invited by the early interventions program to participate in a new "swim" class that the program was trying out. The class was for children 6-24 months who have sensory processing issues. During the class, the therapists integrate sensory exploration with water play. You may remember, if you've been following the blog for a long time, that last year about now we were gently introducing Jonah to the idea of being in water. It was a very long process. Jonah absolutely hated being in the water. But by the end of summer, we not only got him used to the water, but he absolutely loved it! So of course since we've created this little water baby, I thought it was a great opportunity for him to join this class.

Then we went to the orthopedic surgeon. Jonah had casts put on his feet, and that was the end of that idea. Now that Jonah's casts are off, I have not heard of another session of the swim class starting.

So I decided that we could do sensory integration and other therapies through water play here at home. I decided to buy Jonah an Artic Splash water table from Step 2. I chose this table because it was affordable, and also easily available at our toy stores in the area. I had also considered getting a table that could hold both sand and water, but in the end I decided that the whole thing would end up one big murky sandy mess. No way would Jonah leave the sand in the sand compartment and the water in the water compartment!

As far as water tables go, this one is okay. It holds water, and therefor serves its purpose. I wish that the pieces to the glacier could snap together somehow, because every time Jonah bumps it, it falls over. I was also disappointed to find that the figures that come with the table (a walrus, a polar bear, and a penguin) do not fit down the "water slides" that make the table look so fun. Also, and this is just a nit-picky geeky mom sort of thing, but the "Artic" water table came with a penguin. Penguins do not live in the artic region, they live in the antartic. You would never see a penguin hanging out with a walrus and polar bear. Jonah seems to agree with me, that this is an issue, as he has removed the penguin from the set and placed him with the fisher price farm animals. Although I doubt you'd ever see a penguin hanging out with a cow either.

We started out just by exploring different water toys and "tools" in the table. Jonah really enjoyed figuring out what he could do with each toy.
I am working with him on motor planning skills by having him pour and scoop. We've been doing this with beans, rice, and flour, in the house with kitchen utensils. The water table gives us many other options for this. Jonah explored using different kinds of tools for scooping water into different kinds of containers. This water table is also very handy for scooping and pouring, because the glacier tower is a water slide. When Jonah pours water into the top container, it flows through the glacier and comes pouring out into the main water compartment. Jonah really enjoys this feature.As you can see, though, he still needs a lot of practice on getting the water into the container! He's got the concept down though!

This water table gives us a great way to fit things we've been working on in therapy, into our everyday play on hot summer days. And Jonah loves the chance to be outside.

Friday, July 23, 2010

Pinkies and Piggies

*for the purpose of writing this review, Pinkies And Piggies provided me with a take-home impression kit and keepsake free of charge.

I have been feeling rather sentimental about my children recently. I think that everyone, especially mothers, get the feeling that they want to freeze-frame time and take in every detail of every second. I have been feeling this way quite a bit lately. Most of it has to do with Jonah graduating to toddlerhood. We're planning his second birthday party already, applying for preschools, and trading in diapers for underwear. Where did my little baby boy go?

And then there's Evie. Last night while my husband was swaddling her, he exclaimed "She's grown in the last hour, I swear!" and it was true. Very suddenly her swaddling blanket did not fit her anymore. It really seems as though she's growing at lightning pace. Because she's most likely going to be my last biological child, I'm already missing being pregnant. Here I am packing up the newborn size cloth diapers, wondering if I'll ever get them back out again and wishing that time would slow down just a tiny bit.

When I first heard about Pinkies and Piggies, I fell in love with the idea immediately. When Jonah was a baby, I took several handprints. Some with ink, some in plaster, some in clay, and even some in a concrete stepping stone for the garden. But none of them seemed to catch the nuances, or the satisfaction that I felt when admiring his tiny baby fingers and perfect miniature palm. Those are the feelings and memories that I long to preserve the most. But Pinkies and Piggies gives a unique spin on preserving baby's hand and foot prints. With their take-home impression kit, parents can create a mold in their own home from baby's hand or foot print. Pinkies and Piggies will then turn it into a detailed 3-d glass ornament. And since the company is so local to us, I knew that I had to try it out.

When the kit arrived, it was packaged in an adorable box. I felt as if I were opening a gift, and would not hesitate to give this as a very special baby shower or baptism gift. The poem on the wrapping of the package brought a smile to my heart.

The kit consisted of a set of instructions, a plastic tray with a modeling compound, and the materials to send our print back to the Pinkies and Piggies studio.

Daryl and I decided to mold Evie's hand. It was a very tough to decide between the hand or the foot, because both baby parts are so precious. I liked the idea of having her hand, because it is her hands that I am always kissing... when I nurse her, on the changing table, playing on the tummy mat. Her little fingers get an awful lot of smooches.We tried to take the impression while she was sleeping. I am all to aware of how difficult it can be to get a newborn's handprint. They like to keep their hands fisted up, and still have the "grabbing" reflex. I thought that while she slept, her hand might be more relaxed and easier to work with. Of course, she woke up as soon as she caught wind of our scheme to poke her hand into cold modeling compound. I typically would have had Daryl hold her while I took her imprint, but because I wanted to document this with pictures, we chose to do it on the floor where she would be level with the tray.
Unlike the imprints that I had taken of Jonah's hands in plaster and concrete, it was easy to get just what I wanted with the modeling compound. I was amazed at how soft it was, and how easily Evie's hand set down into it.
The first impression had a funny divot at the top of her thumb, and the line in her palm wasn't fully imprinted, so I simply rolled the compound into a ball and flattened it back out again into the tray. I did this a number of times before getting the print exactly the way I want it.

I'm really impressed with how detailed the print is in the modeling compound. If the glass can pick up all of these details as well, then it will truly be a treasured keepsake. I'm excited to see how the ornament turns out!

We did have a problem with the tray breaking when I was putting the modeling compound back into it after a failed attempt at getting the handprint. I think that I was pushing it too hard into the side of the tray though and it is not really a fault of the product.

I was also disappointed to find that Evie's full name as well as the date that the print was taken, would not fit. Customers can have the baby's name, plus either the baby's birth day, weight, or the date that the print was taken, engraved on the back of their keepsake. Understandably, space is limited, and we had to settle for Evelyn's first and middle name, as well as the date. There is also a choice of pink, blue, or clear glass. Daryl wanted clear glass at first, but I mentioned that it would be nice to perhaps have one of Jonah's made in blue, and we could hang them side by side and have Evie's in pink and Jonah's in blue if we decide to get his hand done as well. Daryl agreed, so we checked the box for pink glass.

I sealed the handprint and the order slip in the box that was provided, and dropped it off at the post office. In three to four weeks I will be receiving Evie's beautiful hand, preserved in glass. I really cannot wait to share with you how it turns out!

If you are interested in purchasing your own ornament, or want to know more about Pinkies and Piggies, visit the website at http://www.pinkiesandpiggies.net/index.html

Tuesday, July 20, 2010

What to Do With 10 Quarts of Blueberries

I posted a little over week ago about our adventures in picking blueberries. We picked ten quarts. That's quite a few blueberries! When I planned this little outing, I already had in mind what I was going to do with our beautiful blue bounty of berries (can you tell we're still working on the "b" sound in therapy?) I had allotted in my mind a specific amount for snacks, some for baking blueberry muffins to freeze (they make wonderful quick snacks and breakfasts- just pull out of the freezer and thaw!) but the majority of them were going to be for my very own kitchen adventure. I've resolved myself to learn how to make jams, and preserves, and also how to can them. My first attempt was, as you may have guessed, blueberry jam.

I followed the instructions that I found inside of a package of Ball Pectin. I think other pectin has instructions and recipes, but I'm not sure. I did change some of the things that I did, based on advice that I received from other mommies who can.

Blueberry Jam:
approximately 4 cups blueberries (1 quart or 1.5-2 lbs)
4 cups sugar
2 tbl lemon juice
1 package pectin

Before making my jam, I prepared the jars by sterilizing them in the dishwasher. I placed the lids in hot water, to make the rubber part become gummy (this helps to create a better seal.) I filled my large pot with water- enough that the water level would be two inches above the top of the jars, and I put it on the stove to start to boil.

I washed and sorted the berries, removing any twigs, stems, and squirelly looking berries (and since Jonah had helped pick these, there were a few unripe berries to be taken out.)
I used the food processor to crush the berries, but if you have excess aggression that needs to be vented, you can use a potato masher.
I put the berries, lemon juice, and the pectin into a pot and heated until it boiled and the bubbles couldn't be stirred away. I stirred the berries constantly. With the first batch, I accidentally mixed the sugar into the berries with the pectin. The jam didn't set, and I ended up with blueberry syrup (still just as yummy!)
After the pectin and berries came to a full boil, I added all of the sugar, while stirring constantly. When the mixture came to a full boil again, I boiled it for two minutes.

I then filled the jars. One of the tools I wished that I had was a wide mouthed funnel. It definitely would have made this step much easier. I used a ladle to pour the jam into each jar, until it was 3/4 inch from the top. I used pot holders to hold the jars as I did this, but if you have one of those oven mits that works like a glove, it would be very handy here. I used a wet rag to wipe away spilled jam from the top of the jar, and then placed the lids and rings on. I used ice cube tongs to retrieve the lids from the hot water, but they make a magnetic lid lifter for this purpose as well.

I then placed three jars at a time into the large pot of boiling water and covered the pot with the lid. I boiled the jars for ten minutes. I used a special set of tongs to place the jars into the water and to lift them out. To test if the jars were sealed properly, I pushed on the top of each lid. If the middle of the lid pops up and down (think of all those Snapple commercials, or the lids on baby food jars) then it isn't sealed. I let the jars of jam cool on the counter overnight.
Even though I had a lot of berries, I didn't try to double the recipe or make a lot of jam at once. If you don't do it in small batches, it won't set properly.

Of course, the most fun step is the final step: eating the delicious jam on toast! Even Jonah likes helping with that part.

Wednesday, July 14, 2010

Easing the Fears

***Yet another disclaimer: This post contains descriptions of me using my breasts for what they were made for. It also contains pictures that to some, might be "graphic" so if you don't want to read any words that are related to my breasts or see any pictures of my beautiful babies eating, then look no further than these asterisks***
Seeing these two pictures next to each other brings up a mix of emotions that I had never prepared for. The top picture is me, learning how to get Jonah to latch on. It is the second time I had ever attempted to feed him. I remember very vividly, Daryl bringing me a still wrinkly Jonah from the bassinet. Ah, this is the moment I'd been waiting for- this is the moment that everyone had told me would make me feel like a mother. The first time I had nursed him, I was in the recovery room from the OR, still groggy from general anesthesia. It had been interrupted by a very stressful phone conversation from the pediatrician on-call, and there really isn't very much that I remember about it. Even at the time, this seemed like the first moment that I would be feeding my baby.

I opened up the hospital gown and tickled his nose with my breast, just as our bradley instructor had taught me to do. It didn't work. He didn't turn his head, he didn't open his mouth. He grimaced, stretched, and started to whimper. I tried it again. "It worked the first time" I said as Jonah let out a newborn wail. Seeing his mouth wide open, I decided to seize the opportunity. I shoved as much of my boob as I could, into his mouth. I think it surprised him, because he stopped crying. He took a couple of tentative sucks, then popped off. "Well this isn't making me feel much like a mother" I told Daryl as I pushed the "Call Nurse" button. "Yes?" said a voice on the intercom. I felt stupid saying it "I need help feeding my baby!" I told her. "Be right there!"

By the time the nurse came in, I was close to tears. I couldn't do it.. all the reading and practicing and talking to other mothers.. and I couldn't do it. "I need help.." I glumly told the nurse as she brought the rocker next to my bed. "Everyone does" she reassured me. I liked this nurse a lot. She was eight months pregnant herself, and I think that caused a sense of compassion that I had not felt from the other nurses. She helped me get all of our chords out of the way, and placed Jonah back into my arms. "Tickle his nose like this... and.. there!" He latched on. I couldn't believe it. I fell in love with him all over again, for the hundredth time that day. Minutes later is when he began to choke and was rushed to the nursery to have a tube stuck down his throat to remove "excess mucous from birth."

Fast forward to the second picture. That picture was taken six months later. We had just returned home from a weeklong stay at the Toledo Children's Hospital. I had been given a rental pump and some bottles, and was told we had to stop nursing. "He just isn't growing at the breast." they told me. At six months old, my baby boy was only weighing just over ten pounds. He had stopped growing. He started gaining weight soon after we switched to giving him bottles of pumped milk. This journey of ours is chronicled here on this blog, so without getting into it I will just say that the second picture is of the last time I ever nursed Jonah. Everyone including lactation consultants, our pediatrician, and la leche league, said they would get Jonah back on the breast, but nothing we tried worked. The last time I spoke to our la leche league leader, she had happened to call me while I was shopping. Ironically, I was having a breakdown in the formula aisle, trying to choose what was to become my son's leading source of nutrition, when my cell phone rang.

Fast forward again to when I was four months pregnant with Evie. "You're not going to try to breastfeed again are you?" This question tore my heart out. We had never found the cause for Jonah's growth problem. After a bombardment of testing, the best that any doctor could come up with was "reflux." The best that any lactation consultant could come up with was "nipple confusion." And now Jonah was having development issues. Deep down, on a level I never showed anyone (or at least tried not to show) I did blame myself. Jonah couldn't walk and couldn't talk. He couldn't do a ton of other things that kids his age were supposed to have mastered months before. And now here was this child who I was supposed to have been able to feed, to nurture and nourish, and I couldn't, and now he has all of these problems. So while I wanted to answer my friend's rather intrusive question with "of course I'm going to breastfeed!" all I could get to come out of my mouth was "well... I'd like to at least *try*"

"You have skim milk, you know!" that's absurd, I thought. "It happens more than you'd think! Some women don't make good milk. You're just one of those women. You should give a bottle of formula at least for every other feeding, and maybe not nurse the whole time. But if you need that for emotional reasons, still nurse, but give a bottle most of the time." My friend talks a lot without thinking. I didn't respond, mostly because I was so dumbfounded at what I was hearing but also because I couldn't get a word in edgewise! Had I not been broadsided by this whole conversation, I would have told her that breasts don't work like that. Instead, I thanked her for a lovely visit, gathered my purse, and left.

By the time I got to the first stopsign I had to pull the van over and cry. Was I so selfish that I was going to.. no, that I *had* sacrificed the health and well-being of my child for "emotional reasons"?? What if I can't feed this baby either? What if I stick to my guns again, and this baby doesn't grow because of it, and it effects her development too?? Was I being *that* selfish? How was I going to feed this baby?

I had this fearful conversation with myself pretty much up until the time that I found myself in labor. But, I would very proudly like to show you another picture:

This is a picture of me, learning how to breastfeed all over again. My fears weren't instantly calmed. But I could tell right away that Evie was different. She can suck much stronger than Jonah ever did. Throughout the day, she goes every two to three hours without eating, rather than constantly needing to be latched on. She does not throw up entire feedings, and she has never had the milk come through her nose as I am feeding her. It's only been five weeks, and already my experience with feeding her has been infinitely better than with Jonah.

When we found out that Jonah has 22q deletion, my fears were calmed even more. In the packet of information that was handed to us, we learned that a great number of children with the deletion had unexplained failure to thrive as well as extreme feeding issues. It wasn't my fault. He couldn't eat. I had done my best, and so had Jonah, and it wasn't anyone's fault that I couldn't feed him. And it wasn't my fault that he doesn't talk and that he couldn't walk until a couple of months ago. It wasn't my fault that he has autism. These things all come with the deletion as well. It wasn't my fault...

Further calming my fears: Evie already weighs ten pounds. She has outgrown clothes that Jonah wore until he was 6-7 months old. She is GROWING. And it's all thanks to me and my boobs!

I'm not letting my guard down completely yet. I will be eyeing that scale for a long time. I will always be wondering if she's getting enough to eat. Especially since we don't yet know if Jonah's syndrome occurred randomly or is inherited. But I am no longer terrified that I am somehow sabotaging my children's growth and development. The guilt is gone.

Tuesday, July 13, 2010

From EC to Potty Training

As Jonah gets older, we are beginning to move from elimination communication to full time "potty training." We have not been as consistent with the EC as I would have liked. We were beginning to get really consistent at home, and even often times out in public. Then I dropped the ball. I began putting him back in diapers. At first it was just for evaluations and doctors' appointments. There were several times when I knew he had to go- he told me he had to go. But in the middle of an evaluation, you can't just interrupt everything to take a child that is wearing a diaper to the toilet.

First of all, when I tried to explain that he does use the toilet, and explain the fundamentals of EC to them, they looked at me like I had two heads. I probably would have looked at me like I had two heads too, before I saw for myself that it actually works. The problem is, they won't let me show them that it works.

Jonah began to learn that he can go in his pants and not have to stop playing. We started to have several misses even at home. As I grew more and more pregnant, my patience grew more and more thin with the potty situation until he was back in diapers full time. A week or so after Evie arrived, Jonah started telling me if he had to pee or poop, just like he had before. He wouldn't go on the potty though; I'd sit him on the toilet, and he would fuss and fidget until I took him off and put his diaper back on. I wouldn't even be done washing our hands, and he'd gone in his diaper.

Then there was the day he stood outside the bathroom door signing "change." I said "What do you need in the bathroom??" To which he replied "ingy!" (stinky.) He opened up the door, laid on the floor, and stuck his legs in the air for me to change him. "ingy.. ingy!" he yelled. I decided then that it was time. I was going to declare no more diapers once again.

I've written before about how there are times I just have to get the courage up to say "no diapers today." and I truly believe that it really works. It focuses us on noticing when Jonah has to go and what he is communicating to us. This is overall a very good practice for the whole family, because he still cannot verbally communicate much of anything. Sometimes I fear that I am the only one who understands what he wants and needs at any given moment.

Potty training after using EC for any amount of time is a little different then traditional potty training. For one thing, the child already knows what the potty is for, and already has an awareness of when to use it. It is becoming very obvious now that our problem is getting Jonah away from his activity to go to the bathroom. He will let me know when he has to go, but is more than reluctant to leave his toys to come with me. I've found that a good way to alleviate this is to let him take a small toy or book with him, so it doesn't seem like a punishment to go to the potty and leave his toys. I also really try to soup up the coolness of what is in the bathroom. He loves to get a few pieces of toilet paper after he's gone, and to flush the toilet. I remind him that we're going to go do these things as we're leaving his toys behind.

I've been calling our little venture "Operation Underwears." We've had quite a good success rate. There have been several days without any misses or accidents. When they do occur, I've noticed that it's during a time when someone else is watching him, or if I'm distracted by something else (like feeding Evie or making lunch.) I've also noticed that it does help to take him even if he isn't telling me he has to go, or showing signs of needing to go. I always put him on the potty before and shortly after we eat, before going outside to play, and before bed/nap. He will go, and it cuts down on the risk of us having a miss during something that will distract me or something that he won't want to leave.

We've been using our Motherease fitteds as "underwear" and they work quite well. They feel like cloth underwear to him, yet are absorbent enough to keep any messes controlled. They also snap on and off very easily. Last week I went to the store and bought real underwear. I was very disappointed in the choices of characters they had. Jonah has no idea who Buzz Lightyear or Lightning McQueen are. And the other characters seem too violent for a two year old. He would love a pair of Dora and Boots underwear, but they only make Dora underwear for girls. I wonder why that is- just because Dora is a girl? I know several little boys who just adore Dora. We settled for some Thomas the Tank Engine, and a pack of three different disney characters. For some reason, Jonah has fallen in love with the Wall-E pair.

Saturday, July 10, 2010

Blueberry Picking: Nature's Hidden Therapy

Sometimes as parents, we have some crazy ideas. More often than not, these ideas come back to bite us in the rump. But other times they actually work out really well. Blueberry picking was one such idea.

As we drove to Erie Orchards, I couldn't help but ask myself repeatedly why we were doing this. Gallivanting around the blueberry bushes with a three week old infant, and a very spirited toddler, was suddenly not appealing to me as much as it had earlier in the morning. That morning, I had pictured Evie sleeping peacefully in the sling as Jonah and I plopped juicy berries into his special pail. We'd been reading the book "Blueberries for Sal" by Robert McCloskey and I'm always trying to find ways to teach Jonah where our food comes from. So, when my friend emailed me to let me know that blueberries were ready for picking, it seemed like a good idea at the time! But now, as the van got closer to our destination, the pictures in my head were those of a screaming inconsolable infant, and a blond haired tornado covered in blue stains as he smashed handfuls into his mouth between tantrums. And now, for better or for worse, my mother-in-law had been added to these pictures.

When we arrived at the farm and unloaded the crew, I could see my premonitions coming true. We went into the front shop to check in, and I remembered that Jonah needed sunblock. As I fished the lotion out of my bag, Jonah caught sight of some blueberries in cartons. He waved his hand at them and signed "please." And here it starts... I thought. I told him we'd be getting our own blueberries soon. Apparently, that was not the answer Jonah wanted. He wouldn't even stand still for me to put the lotion on him. He wanted to wander around. He wanted those berries! I was about to call it off, but we eventually got ourselves together and made our way out to the blueberry field.

We found that the stroller was actually useable out in the field. We thought that even if Jonah didn't want to sit in it, at least we could use it to cart the blueberries back to the van. Jonah did sit in it until we found the perfect place to start picking. As we passed each bush, Jonah signed "flower" and stuck his nose out to sniff. We finally found a spot on the edge of the field where there were plenty of ripe berries. As Jonah got out of the stroller, all worries disappeared. We were the only people picking at that time, so there was no one to disturb. Evie was already sleeping in the sling. Things were looking good.

We took Jonah to the bushes, and he continued signing "flower." I finally got him to focus enough to show him what was on the bush. His eyes got wide, and he said a word I hadn't ever heard him say before: "Bew BEE!!!" I laughed "Blueberries, yes! Like we had for snack!" We had blueberries for snack the day before, that we had bought from the farmers market and I had been encouraging him to say the word. We've been working on the "b" sound. I showed him how to pick a berry and put it in the bright orange pail we had brought. After a few tries, he figured out that we were just picking the berries that were blue, and leaving the green ones on the bushes.

This was wonderful "hidden" therapy for him. Jonah's therapists have been giving me ideas for things I can do with him in everyday setting, that will enforce what we are doing in our sessions. Blueberry picking turned out to be a perfect hidden therapy! We worked on physical therapy, because he had to learn to navigate the soft dirt between the bushes. Occupational therapy was worked on by working his fine motor skills to pick individual berries and placing them successfully in the pail. His motor planning skills were honed as he had to figure out which berries were ripe, pick it, and then find his way back to me and the pail. And of course, we had sensory integration too, as he continuously popped berries into his mouth.

I was most impressed though, with how vocal he was. The whole time, he ran from bush to bush, shouting "Bew bee! Bew Bee!!! Bew Bee, yeah! mum mum mum.. mmmm!" He has since altered the way he says blueberry, and now it is closer to "Bew Blay"

Together, Jonah, Mother-in-law, and I picked ten quarts of berries. Erie Orchards isn't 100% organic and pesticide free, but they do not use pesticides during the four months before picking season. We are planning on going to another organic farm this week, not because we need more blueberries, but because it was such a good experience for Jonah.

And of course when we got home, it was dinner time. What better dinner after such an activity than blueberry pancakes. The whole family loved every bite!

Tuesday, July 6, 2010

What's the Deal with Jonah

I was 38 weeks pregnant with Evie when Jonah and I made our way to the county hospital lab. I was emotionally numb from the evaluation we had just left. It was in a fog that I navigated the stroller through the sterile-smelling hallways, only halfway reading the signs that were directing me to our next destination. We were getting too familiar with blue signs and grey lettering telling us which way to go- almost like we aren't in control of our own paths anymore.

"They said he wasn't" I whispered, disbelieving, under my breath. "Everyone has said that he wasn't- he isn't..." I stopped for a second to ponder which direction to turn. Did we miss it? No, I see the signs ahead LAB. "Should we get a second opinion?... I should get a second opinion.." I rolled the stroller in front of a receptionist's window and tapped on the glass. I silently handed her the paper work and my ID and took a seat in the waiting area.

Jonah wanted out of the stroller. I lifted the tray and helped him slide down the seat. I watched him circle the group of chairs twice, touching a particular screw on each chair as he passed, then coming back to the stroller he stooped down and started rolling the wheel with his hand. My heart began to ache. "He's autistic" I said to the completely empty waiting room.

At first the diagnosis was surprising to me. His speech and occupational therapists out of the Toledo hospital told me just days before the evaluation, that they felt he absolutely is not autistic. The nurse, who is our early interventions coordinator, told me when she was setting up this appointment that she felt he is not- but she would set it up to put my mind at ease. Some of his preschool teachers (who are also occupational, speech, and developmental therapists) agreed with me that he showed some strange behaviors that resembled that of an autistic child, but most of them too, had told me they didn't believe he would be diagnosed with it.

On the other hand, sometimes I tell myself that I shouldn't have been surprised. I should have been prepared to hear someone say very directly "Your child has classic autism." He can be very social with adults, sure. But there are times when his behavior has just been screaming autism to me. When he is screaming at music class because I sat him on the parachute for a song about colors. When he absolutely cannot pass an open door without shutting it, throwing a tantrum if you make him move on while leaving the door open. When he is outside in the driveway standing pieces of sidewalk chalk on end for almost an hour, letting out a blood curdling scream if one of the pieces in line falls over. When a child approaches him on the playground to play with him, and he pushes them down and, completely expressionless, walks away to hide under the climber. These are times when I am not surprised by the diagnosis.

The official diagnosis the PDD specialist and developmental pediatrician gave me was classic autism and apraxia. She sent us to the lab to have some genetic testing done to see if he had any genetic markers that have been linked to the development of autism. She explained to me that not all individuals with autism have these genetic markers, but those that do seem to benefit from different kinds of therapies than those that do not have the markers. When they were drawing his blood, something which we have been through several times before, I felt overwhelmed and suddenly the room was spinning.

I woke up on a cot only to see Jonah sitting in his stroller, sticky and blue, and placing Donald Duck stickers all over his tray. "I hope you don't mind dear, he was so frightened when you passed out I gave him a sucker and some stickers. The kids love my blue suckers!" I'm sure the parents share the sentiment... I thought as I watched some blue drool land right on his white shirt. Another nurse came to get Jonah- she'd be holding him this time, she informed me. They left the room, I heard Jonah scream for a second, then he reappeared brandying yet another famous blue sucker with a smile.

Weeks passed and I had nearly forgotten about the genetic testing. Evie was born. we took her for her first pediatrician appointment. We had to wait a little longer for the doctor to come in, which I thought was strange since I had just seen her in the hallway and she was obviously done with her previous patient. When she finally came in, she oggled over Evie telling me how "absolutely perfect" she looked. The typical well-baby visit ensued, albeit with a few more questions than I liked about the manner in which she was born. After Evie was checked over, the doctor sat down. "I wanted this visit to be just about Evelyn" she said "but I just got a phone call right as I was about to come in to see you." The call was from the genetics lab. Jonah has three genetic anomalies. Two of which the lab has no information on, but one of which has an actual name. Several names, to be correct. Jonah has 22q11.2 deletion syndrome, otherwise called catch 22, 22q deletion, digeorge syndrome, and velo-cardio-facial syndrome.

After talking to a few more doctors, and gathering as much information as I could, we've come to realize that this answers every health question we've ever had about Jonah since the first moments after he was born. It covers everything. From spitting up through his nose and choking when he was first born, to the failure to thrive, to the orthopedic problems, and even the autism (to an extent.) Everything. We are also learning that we are very fortunate, as a lot of individuals with 22q deletion have very serious life threatening conditions such as heart problems (way beyond Jonah's benign murmur.)

We have been referred to a clinic in Columbus that specializes in treating children with 22q. This is a relief, because they will have all of the specialists there that Jonah would need to see rather than having to run around to a million different appointments. It's also nice to know that the doctors we will be seeing are experts in cases like Jonah's. Right now the doctors on his team have merely heard of the syndrome, but don't know much about it.

So this is the place that we are at right now. It is a little overwhelming, but we are beginning to get used to everything.

If you want to know more about Jonah's syndrome, visit these websites: