Sunday, March 29, 2015

Three Years with the Professor!

Elias is three!
Three years ago this little man brought a whole world to our family. It just feel right, like we belong and yet it really wasn't so long ago that this adventure began.
Little man wanted a snack and I left a whole costco size bag of these on the counter ....
When I'm asked to describe Eli's personality I like to say he has the charm and determined personality of a CEO of a Fortune 500 company, trapped in a little body with intense but irresistible framed eyes. He's an introvert and loves to live life joyfully in the moment dancing his little heart out to whatever music moves him. He's officially in preschool now and at times he seems entirely too young to be there. Especially when I drop him off, leaving him to sit on the ground in tears, lifting a forlorn hand to wave goodbye as he peers around his teachers legs to see me drive away. It's then that I remember the reoccurring nightmares I had as a child of being lost at a store and only running out the front door to see them look at me and drive away. Now it changed though and I'm the one in the car still trying to look brave for my little man.
Then there are other times where he seems so grown up. I had popped in near the end of class to bring mini cupcakes to celebrate his special day with his class. He had no idea I was there and looked so grown up as he went to the sink, pulled out the step stool and properly washed his hands and sat patiently for snack. His eyes lit up though like the sun when he spotted me but he checked himself, staying seated and put all his energy into an enthusiastic wave. Ms. Cheryl has told me that for the last few times he stops crying not long after I leave, walking in on his own (albeit with resigned shoulders) and hangs up his backpack ready for the day. It comforts me to know he's adjusting and proud of him in his growing maturity.
After cupcakes I took him out to lunch for Costco pizza. He seemed to know it was a special day with all the snuggles, playful poking and smiles. We spent the afternoon doing all his favorites, watching Signing Time, reading books, swinging and dancing.

On Sunday we did our family celebration. I made Hopkins cupcakes as his theme. Hopkins is a frog found on Signing Time who's hopping theme song always has Eli bouncing like mad on our couch. I've resigned myself to the fact that its ruining the cushion and designated that section to be Eli's spot. It futile to try and stop him unless you sit constantly by him. Besides, his squeals of laughter and yo-yo bounces always put a smile on my face. For his gift we downloaded a bunch of his favorite songs to add to his playlist.
I love this little man with all my heart! I need him more than he can possible know, to remind me to be in the moment and simply enjoy the small things of life. Happy birthday little professor!

Sunday, March 22, 2015

Special Kids and 3.21

Happy world down syndrome day! March 21 is chosen because it is at 3.21 (three chromosomes on the 21st pair). Last year this time we were out in DC and celebrated by being released from the hospital for an infection in Eli's foot. This year I was determined to do something a lot more fun! Unfortunately Kent was headed out of town for a retreat and I had to consider if I could handle something with all four kids and no help. The special needs kids day was held today at the McCormick Stillman railroad park. It seem like the perfect event for all of us while still celebrating my youngest little man and his extra little special chromosome.

Ice cream is always a highlight!
Eli seems to understand these activities better now and wants to participate in all sorts of ways. He isn't too into animals so he surprised me when he wanted to pet some. He was cautious and amused to see them up close but would only touch the rabbit. We did smile as we signed each animal. Keila loved on one for as long as possible, probably in fond memories of our Sunshine.
Games are always a hit. Isaac loves the prizes. Eli kept shaking the fishing pole so much that the fellow behind it had a hard time pinning a prize to it until Keila helped out and held it still. Eli was a little miffed at big sister!
Isaac's first selfie with my phone. The older two were such big helpers. I couldn't have done it without them, they were awesome!
Here are just a few shots of other things that occured while Kent was out of town. Eli's picture of mud play was on the very first day ... of course! The second one is the first day of spring and Rita's ice. The older two were too obssessed with sugar intake to look up for the camera. Eli on the other hand is quite a ham when I bring it out.
I just love shots of Keila when she is truely happy. This picture reflected all of us. I did more than survive 4 kids on my own, the older two did tons to help and they knew it and were proud of it. The younger two had fun ... it was a successful 4 days .... not saying I want to do single parenthood anytime soon though!

Saturday, March 21, 2015

Chinese New Year 2015

I've been a little preoccupied with getting Eli ready for preschool, as evidenced by the last post. Between the evaluations in meetings as well as applying for Arizona long-term-care it sucked up a lot of my energy. But despite that we did not miss celebrating Chinese new year. As usual I taught in Keila's class,and sadly realize that it would be the last time I'm doing it at Stepping Stones preschool. I was gratified to hear that many of the kids went home and told their parents all about what they learned and their parents thanked me for my time with them.

The Chinese new year celebrations are no longer held at the cultural center but rather at the Margaret T Hance park,it just doesn't feel the same! Unfortunately the cultural center just does not have the space to house such a large event. We went last year and weren't too impressed so we decided not to go. Instead we went to the lantern Festival out in Peoria. It definitely cost more but it was fun to go on a night outing with the kids and to see such beautiful lanterns.

our serious little kung fu master!
keila's favorite lantern.
Little Emperor would have nothing to do with the pictures.
The horses were my favorite
Happy year of the sheep everyone!

Tuesday, March 17, 2015

Tears for My Big Little Man

I'm outside right now with only Eli. I'm watching him now, dance his own special moves unique to each song with his wide mouth grin and I feel like time disappeared. We just completed the process of transferring Eli from home therapys to the public school. Literally this next Monday he can attend preschool and continue his work in a classroom setting. We knew this would happen when he turned three. I've been gearing up for it and thought is have two more weeks before it would happen, but apparently the IEP meeting means he can begin now. While I know it would be good for both us, part of me aches inside.

For the last three years I've been at 99.9% of all this therapies, learning alongside home, gleaning as much I for as I can from the therapists. I've worked with him to strengthen his muscles, learn to roll, sit up, walk, jump. We've spent countless meals helping him learn to feed and attempt utensils. There have been all sorts of 'experiments' with differing textures, movement, sounds, etc to figure out his sensory sensitives and help him overcome it. Then there was all the time spent methodically introducing the things that were hard for him to take in at increasing intervals to help him cope with our sensory ladened world. There have been times where I am so sick of things being thrown, or hitting and screaming on his part. Times where I was tired of cleaning walls and floors for the third time that day because of his frustrations or sensory issues. The exhaustion of appointments in addition to five hours a week spent working at the preschool were all so he could have peer motivation to work on achieving his milestones - it is all finally at an end. I should feel proud, happy and definately relieved, but mostly right now I feel sad.

Little man at Stepping Stones Preschool with me in the playroom.

After much thought I realize that it's because I won't be there. Who will protect him, who will explain when his screams are out of fatigue and over stimulus or just plain excitement to other children and adults. Who will interpret for him when others don't know sign language or find him healthy outlets when all the environment is too much to take in? Most of all, who will sing to him his lullaby that unfailingly calms him, no matter how sad he is, or how big the hurt. It's not that much different from a parent saying goodbye to their child for their first day of school and yet it feels much more because he is so young and innocent. With the older two i enrolled them at a preschool where I could aide and watch like a fly on the wall as they ventured into the bigger world. I won't have that with Eli. He isn't even verbal yet so he can't really tell me about his day. I feel like a limb that's been cut off and my heart bleeds. Ready or not though, it's time for the big leap. I know we'll be okay, both of us.... in the end.

Eli playing tag with Isaac.

(Tuesday March 17, the big day)

We started preschool today. I asked to give the kids a brief intro of Elias and sent him out to play. It's not that I think his teachers are incompetent, far from, it's simply the neurosis of being a mother! I had a two presents, one light and the other weighed down. My thought was to have the kids move the boxes and see how one is much harder to move, likening it to Eli and his body, that everything uses muscles and so everything is harder for him. Despite that, he loves the same things they love, the slide, the swings, music and dance. The kids were more fascinated by the presents and I went in knowing that this little intro was more for me and Eli than for them. After all, they're young and don't have the prejudices that adults have. I then bade him farwell and walked out to his wailing. A half hour later I walked to the car and could still hear him crying on the playground and had to swallow my tears.

Doesn't he look darling with his backpack on? Oh so grown up, my bug little man! As hard as it was, I'm sure things will get better with time and this will all be just a memory.

We want to give a big shout out to all the therapists we've had these last 3 years. From Ms. Lori who's been with us since Eli was 6 months, to Ms Sheila our newest help. We've loved you all and you guys have become family to us. Ms. Jen who miraculously won Eli over on her first visit using bubbles, Ms. Alicia who help us with Isaac in addition to Eli and saved my back by loaning a swing when Leora was born, Ms. Teri who helped with feeding and added new songs to his playlist, Ms Clara who loved to sing and Ms Christy who brought some of the most memorable sensory experiences for Eli despite all the work and mess! We can't begin to name or thank all of you. Here are some of the latest therapy pictures, making playdough in one and playing with whipcream. Ms. Christy said that four adult hands weren't fast enough for Eli's two little ones!

Thank you one and all for being a part of our journey and faithfilled thoughts for this next one!