Monday, August 30, 2010

Preschool Blues

This morning I drove my 3 year old beautiful, funny, loving daughter to her first day at preschool. Her classroom has a mixture of other children with Individual Education Plans (IEPs) and children who do not have IEPs. There are two teachers and the lead teacher has a Master's in special education. It is a wonderful school. On our tour, Sophie loved it and was angry with us when we had to go. I had no doubts that my little social butterfly would do well there.

I knew this morning would be hard on me, letting her go. Parents all over the world are going through their own child's first day of preschool, kindergarten, college. Letting go is harder on us then on the kids. We leave a piece of our hearts in their backpacks as they board the bus or as we turn to say goodbye and try to make it out of the classroom before we can no longer hold back the dam. Parents of children with special needs aren't any different in this way from other parents. Except, I think, we are.

For me today wasn't just about my baby girl taking a big step towards growing up. Yes, all parents have to trust that the schools will do right by their children and keep them safe from harm's way. However, when you have a child who has a developmental disability and is nonverbal or like Sophie with a very, very limited vocabulary, this ups the ante. We don't just worry about whether or not they will be afraid once they realize we aren't there, or if they will make friends, or participate in the activities. We wonder how on God's green Earth we will ever know. Will I know if a child is picking on her or the extreme case if she has a teacher or aid that is dangerous when she can't tell me? Monsters like this are out there and they target our kids, a fact that keeps me up at night if I allow my mind to go there. The trust ante is up when we send our kids to school and so is my anxiety level.

This morning when we were walking in her classroom another little student said, "Hey you can't come in here. You're not our friend!" I introduced him to Sophie and the teacher explained that it was time to make new friends and that Sophie was their new friend. That settled the matter. I had to laugh at myself (in my head of course) for allowing a 3 year old to briefly rattle my fragile cage. Sophie jumped right in and began exploring and playing. She didn't seem to need me in the slightest. I didn't want to be the mom who hovers when her child is just fine, so I snapped a few pictures and let her take this giant step towards independence.

Three hours later I returned to pick up my big preschooler. Her class was outside on the playground and I snapped a couple of pictures before really looking at her. What I discovered was that she wasn't the curious, happy little girl I had left 3 hours ago. Her skin was the shade of bright pink that she gets when she has over heated (pictures do not do it justice). My child cannot tolerate extremes in temperature or direct sunlight for very long. She was just sitting there, like a lump. Her lethargy and skin coloring was not good. It hadn't even occurred to me to warn them that even 10 minutes in weather like this can be too much. (enter panic, guilt, anger, worry) I think I was especially taken off guard because when I left she was doing great. In the past Alexander has had off days at preschool, but they were always at the beginning, not the end of the day, so I expected to find a happy girl.

I spoke with her teacher to ask how long they had been outside, which she assured me was not very long. I explained that she needs to be watched carefully in such bright light and heat and she too became concerned. She got Sophie a glass of water (which she didn't drink) and said something about making sure to have water outside in the future. I was barely listening. She told me that Sophie loved music time and playing instruments. Of course she did. She's a big music fan. They played with playdough and "she lasted longer than she expected." I didn't ask how long that meant because I was ready to run for the hills, my baby in my arms. "She didn't care too much for story time," which I said surprised me as she loves books. The teacher thought maybe it was because it was a group activity. hmmm? No time to talk. Gotta run away now.

I carried my limp ragdoll to the car and then she lost it and she didn't stop screaming and crying for an hour and a half. Crying in a way that I have not seen, maybe ever, certainly not without a painful injury. I was barely able to get her to drink juice and lunch just wasn't happening. Through her sobs I heard her cry "Daddy" over and over. She wouldn't let me put her down for more than 90 minutes.

My daughter's few words aren't enough to explain to her momma why she's so upset. Was she just overheated and cranky? Was she afraid when she realized that I wasn't there? Was she upset because she didn't understand what today was about, that she's in preschool? Was she worried that I wouldn't be back to get her? Was it all just too much to take in? What happened?

She can't tell me. My child was so distraught that only Skyping Daddy at work and then watching her favorite show Yo Gabba Gabba finally dried her tears and got her off my lap. I felt panicked at my inability to calm her, to understand what was in her mind and heart. I'm angry and I'm fantasizing about either withdrawing her from school forever or sitting in every class until she's 22 years old. Neither is the right option.

My new but already very cherished friend Mara's Spidey senses were tingling and I got a text from her asking how it went. When she didn't like my reply she called me right away and talked me down off my emotional ledge as only true friends can. She let me cry and whine. She told me about her daughter (without special needs) who had thrown fits of gargantuan proportions for 3 months when she started school. She reminded me that her son (who has Down syndrome) will be starting preschool soon and I might need to return the favor if she loses it. She helped me remember that Alexander had his awful preschool days too.

The thing is, I get that all children, typically developing or not, have their own ways of processing change and adjusting to things like school. For me the heart of my pain lies in our communication barrier. It is true that other 3 year olds may have a hard time expressing their feelings or even understanding them, but it is different when you have a child with special needs. It just is. I don't say this to garner pity. Parents of children with special needs do not need that. We need phone calls, understanding, humor.

Sophie finally calmed down enough to eat at 2 and fell asleep at 2:30. We have a day off as she doesn't go back until Wednesday and I'm already coming up with a plan for how to be better prepared, for the both of us.

Monday, August 23, 2010


recommended listening for this post, Soundtrack of Our Lives playlist #5 on the sidebar. Scroll down, click play on #5 and then come back if you like.

Without rain flowers cannot bloom.

I know if it is going to be a dreary, soggy day before I open my eyes. I can feel it. Weather like this shapes my mood before my feet hit the floor. While a good thunderstorm is soothing and clears my head, rain without a storm tends to bring about melancholy. Yesterday was such a day.

The rain wasn't going to help the restlessness in my soul that I had been battling all weekend. An impromptu dinner at our house with our neighbors Saturday night temporarily broke my cabin fever. Adult conversation, good beer, and home-made hummus from our new friend (a chef) had gone a long way to shake me out of this reverie. Waking to rain washed away that reserve.

I couldn't stomach the thought of spending the day indoors, ignoring the 3 baskets of laundry that that were sorted and stacked days ago. I knew I'd lose it if I spent one more second on fb with the tv set to Nick Jr. in the background. As Mark is the greatest husband on Earth who understands me sometimes better than I understand myself, without hesitation he agreed that I needed to get out of the house, alone.

An over sized umbrella and camera in hand, I walked up the road to catch Julia in Eat Pray Love. I hadn't been to the movies by myself in a long time and this seemed like just the flick for my state of mind. In EPL, Liz finds herself on her bathroom floor weeping and praying for direction which leads to a life altering journey. Now, I'm not there, but I seem to be on a quest without the foggiest idea of what I'm searching for. In the Artist's Way (a life altering book that everyone should read, seriously) we learn that we are all artists and that when we deny our creativity we become blocked. When we are blocked we are denying God's work through us. My name is Jen and I am a blocked artist.

Through the camera I tried to snap my way out of this slump, to create - something. I walked, soaked to the bone in the warm summer rain, seeking inspiration. Mark is teaching his first class at his new university today. Soph is starting preschool next week which will be her first real step towards independence. Kindergarten starts really late here (mid-September), but Alexander too is at the beginning of a new adventure. It's time for me to figure out what I'm going to do before I end up drunk in the street, crooning like Mr Bean to 'Yesterday' or to Reba's 'Is There Life Out There.'

A mother to three little ones only has so much time for such self indulgence and examination before needing to hike up her big girl panties and buck up. This is especially true when the youngest is teething and needs to be held and comforted. So, I whispered a hasty prayer for direction, to find beauty in the rain, and headed home.

Friday, August 20, 2010

Dear Friend

We need to have a little talk Ms. Jennifer Aniston. The casual use of the word retard that you said so flippantly in a self deprecating manner on national television was more than a little disappointing. Thankfully you are being called on the (red)carpet for it and I pray that this is a learning moment for you and others in your cohort. Hey, even your buddy John Mayer was quoted during a recent concert with saying "I don't use the R-word anymore and you guys know what I mean." Please join our campaign for dignity and respect for all people. Pledge to stop using the r word today at

click here to see the original clip
Thank you Special Olympics, ARC and US Weekly for your response to this.

Wednesday, August 18, 2010

These Days

We met up with our new friends Mara, Michael, Annie, Ryan, and Andrew for a playdate. They introduced us to the snack Pirate's Booty and showed us a great time. In the pictures I snapped there are a dozen or so orbs which means we were either surrounded by angels or the new camera and I need to have a talk. grrr. Anyway, I am so lucky to have found Mara so quickly. Not only does she have a great family, but I know we'll have some fun together. She's introduced me to a few other cool people and I'll be helping her with raffles for the Buddy Walk at Mark's university.

We were a little late to our playdate because when I loaded us up in the van I discovered that our GPS had been stolen. Nothing else was taken (thank God) and there wasn't any damage. This leads me to believe that I left it unlocked when I went grocery shopping and the thieves got lucky. At least, I hope it was unlocked because then maybe they won't break in again. I made a police report for the record but know I won't get it back. I'm angry at myself for possibly leaving the car unlocked and at the person who helped themselves to a device that has given me the courage I need to explore our new area. We dipped into savings to get another one (which hurt) and I can't quite shake that feeling of being violated and creeped out that such a person touched our lives. This did not happen because we are in a big city. It happened at our old house too, only that time they got away with a power adapter and loose change. We know better. The new GPS is coming inside after each trip and we are triple checking all the doors. No more leaving the windows cracked at night either dang it!

Basket cases!


My sweet kindergartner! He's been assigned to the afternoon class which means he will be taking a bus. This also means that I can run Sophie to school in the mornings before Mark heads to work. No bus for my 3 year old girl! Hooray!!!

Happy random Wednesday!

Saturday, August 14, 2010

An Adventure in Bloomingdale's

THIS is where I wanted to be yesterday. Sitting around Mark's Aunt Judy's pool, drink in hand, surrounded by a million cousins, aunts, and uncles, love and laughter. The clan gathered this weekend in celebration of our matriarch Margaret's 90th birthday. Many years have passed since we've missed a get together with this crew. Since Mark's new job is starting this week, it just wasn't possible for us to make the 18 hour drive. Thank goodness for Skype which allowed us to join in on the toasts to this great lady. Happy 90th birthday Grandma Margaret!

Feeling more than a little blue, I headed towards the mega mall. All I needed was to find a glasses store to get an adjustment and then go home. What I discovered was that Bloomies just happened to be right there! I had no intention of shopping yesterday, but the gravitational force was too strong to resist.

In my 34 years I had never set foot in Bloomingdale's. As a girl from Iowa I knew of it only through the movies and there it was right in front of me. I must admit, I was giddy as a teenager. Some might say "it's just a department store. You've seen it all before except this one might just be even more expensive than the rest." Most would accuse me of being the biggest dork on the planet for taking out my camera. To all you nay sayers, I stick out my tongue because it was fantastic!

It is beautiful inside, so clean, organized and it smells so darn good. I wandered around for a while and then decided I had to try something on, just to say I did.

I had to put the clothes back as they were not in the budget right now. Besides, no one would ever call me a fashionista. I mean, there I was in a designer's mecca wearing an over sized t-shirt, pony tail and no make up. But, still...

I wandered around some more, drinking it all in. I stopped in the hat department and then the shoes. Oh the shoes! When I saw the black leather over-the-knee boots, I nearly tried them on, but I resisted, some how.

Such pretty, sparkly things were everywhere. Now, I'm not a designer bag kind of girl. In fact the only bag I usually have is a diaper bag, but the purse section was a sight to behold.

In any case, this little adventure was a thrill and a much needed distraction.

Did you really think I left there empty handed? Heck no! Those black pants just happened to be on mega clearance, were the smaller of the 2 sizes that I grabbed, and did you see what they did for my back side?! HA! A girl can only resist so much and Mark didn't even mind.
bonus picture just for Darcy who loves Godiva as much as she loves me, which is saying something

Wednesday, August 11, 2010

(not really Wordless) Wednesday

Dust? Effect from the flash, or spooky orb?

I'm going with dust or effect from the flash.

Centipedes beware. If I find you, Mark will squish you. You have been warned you nasty oggie boogies (other friends call them called dust mops or creepie crawlies). 5 exterminated in the past week, ranging in size from an inch to about 4 inches. This gal even has a blog on her war against them.

Steaks for dinner (cheese steaks that is). Otherwise entitled, Cultural Assimilation.

Tea parties in the princess bed are the best kind.
Lastly, hello pretty girl! Mark has a MAC. I have a Dell. Yesterday his job provided him with a new MAC so I'm switching over.
Files are transferring as I type and the conversion is nearly complete. As Mark's brother put it, it's time to drink the (Apple) kool aid. Bye bye Dell. Enjoy your time with Alexander, surfing youtube and learning about ships.

Happy random Wednesday!

Sunday, August 8, 2010

Feathering Our Nest

How does a house become a home? We've been settling in for just over 6 weeks now in our new digs, though it feels longer. Maybe that's because Mark's new job hasn't started yet. Sophie hasn't had therapies and school's out for summer for Alexander. Our days blur together with this reprieve from the tyrannical calendar. When a Wednesday doesn't feel any different than a Saturday it can be freeing, but I look forward to getting us on real schedule.

Even though we may move again in less than a year, I need to feel like I'm living in my home - now. Moving means that we bought a house, so cross your fingers that we find a place that meets all of our needs. We gave the girls the biggest bedroom. It is perfect for them as the vast majority of their toys are now contained thanks to a semi-permanent baby gate at the door. They love it and I love that we can have people over without having to wade through 2 feet of toys in the living room. Mark and I have the middle room with bay windows. They are so pretty and look almost like a giant decorative headboard. Alexander has the smallest room but it is big enough to hold his twin bed and lots of his toys. Since he had been sharing a room with Sophie, he loves having his own private space. We are still unpacking and decorating the kids' rooms (hence no pics yet), but are getting there.

Arranging the rooms was a major undertaking. Sometimes it meant meant hauling the same book case up to the attic, then down to Alexander's room - twice, and completely rearranging our room 3 times to get it right, (requiring Mark to do heavy lifting much to his frustration). Then we could start the unpacking (blech!). Only afterwards could we get to the fun part, feathering our nest.

Before hammering even one nail, I like to use packing paper or newspapers to make a template of all the stuff that will go on the walls. Then we can use tape and hang them up and move them around pretty easily. I kept all the templates and will reuse them again. Mark and I agreed on what was going where and then I hung them up. We know that this is one chore that I'm pretty good at and doing it together usually results in bickering, which isn't good for anyone. Some people wonder why we bothered when we may move again so soon. The thing is, when my stuff is on the walls I know I'm home. It had to be done.

I'm fascinated by the stuff that people choose to hang on their walls as it speaks volumes about their interests, style, and personalities. In looking around our home, I am reminded of our lack of family photos. I have so many really, really good ones (especially from two photo shoots with the great Donita). They are sadly stuck in digital form in my computer. I have had a hard time deciding which ones to print. Besides the printing expense, there's the matting and framing and I just haven't done it, yet. This will be remedied soon and is a new goal I've set for myself.

However, the best way to make your house a home is to have company over. Since our new friends Becca, Steve, and their gorgeous girl Sammi were in town for a quick trip, we finally had our first guests. Becca and Steve are not only interesting and a lot of fun to be around, but they know a lot of stuff about navigating the disability world. Savvy friends are good to have. They brought sweet treats (which I didn't even attempt to resist), an even sweeter girl, and a DS calendar that Becca made with their local group. Thanks again friends! I hope they come back again soon.

the top 2 photos are Becca's and the bottom 2 are mine

This is our new house, our new home and at least for now and it suits us quite well. I debated on whether or not to put up these pictures as it feels a bit, I don't know - intimate. It's just a house so who cares? This is for RK and because of this post . Besides, I had fun playing with the panoramic setting again.

Wednesday, August 4, 2010

HELP NEEDED! Card Campaign for Sarah & Joyce


We all know her. We all love her. It's Sarah Ely of My Name is Sarah - the real life story of a young adult with Down syndrome at Many of us have been following her adventures including waiting for the upcoming ribbon cutting and grand opening of the fabric store JEllen's House of Fabric with her awesome mom Joyce,

Joyce and Sarah have shared so much of themselves and are role models for many of us in the disabilities community. Opening a fabric and quilt store has been a dream of Joyce's for years, but it is so much more than that. I could go on and on about how their plan to employ persons with disabilities is paving the way for the rest of us and how I would love to hang out in Sarah's Sewcial Lounge, but go read the story for yourself here:

When I realized that two very big events were happening for them, I started scheming. See, like many of you it is not feasible for me to travel to the store ribbon cutting and grand opening on August 9th, but I really wanted to help them celebrate. August 9th also happens to be Sarah's 21st birthday, a momentous occasion for any young adult.

I contacted Joyce and ran my plan by her and she loves it. This is where my scheming comes in. I am starting a card campaign and I need all of your help out there in the blogosphere, fb, etc. to repost this card campaign. We may not be able to be there in person to help them celebrate, but we can send them a card congratulating them on the store's opening and Sarah on her 21st birthday! We are trying to keep it a secret from Sarah but since she enjoys reading many of our blogs, that might be a tall order.

In this day and age when getting actual cards in the mail is rare, won't this be fun for them to open their mailbox as they start to pour in? Joyce will make a little display in the store of all of our cards. The store is celebrating all week August 9th - 14th and their favorite designer Kate Spain will be in the shop on the 14th.

Here's the plan, repost the card campaign on your blog, message boards, and social networking sites and ask your friends to do the same. Then hurry and send your card ASAP (and maybe include a photo of your family or loved ones with DS or other disability) to: Sarah and Joyce Ely, JEllen's House of Fabric 5259 Mayfield Road Lyndhurst, OH 44124.

Can I count on you? Thanks everyone!