My life has been a series of unexpected shifts, where I have had to continually check and adjust my expectations. About 2 years ago, I got the news that my baby boy would be born with Down syndrome, a genetic (read: happens on the gene level. Does not necessarily mean hereditary. Just thought I would highlight that often misunderstood conception.) condition which causes mild to moderate intellectual disabilities and developmental delays, which affect things like gross and fine motor development and speech delays. Frankly, I thought my life as I knew it, was over. I was willing to go for the challenge, but with a saddened heart, thought that all of the hard work I had put into starting my own Event Design and Coordination business would be laid to rest. I know...maybe it's silly. But, that's what I thought. And when I stepped away from all of the random and impersonal Google information I could find, and started connecting via blogs, to real-life families, I started to realize that these people have lives. They even have big, successful careers in some cases. I was surprised by that...and hopeful. I got a shred of hope that I wouldn't have to entirely retire my beloved business.
Now that my little guy is almost 18 months old, I realize that life isn't all that much different than it was before. There are some changes- some changes to schedule and more than anything, some changes to perspective. But, ultimately having a business with a baby who has special needs is...well... exactly like having a Baby while having a business. The special needs part is simply like a few extra appointments on the calendar. I make time for 3 therapy sessions a week for Elijah, and starting next week, that is jumping to 5 therapy sessions a week. For now, they come to our home and work around Elijah's schedule, so it's not especially disruptive to his general schedule. I like this time- it's quality time with Elijah, time to learn new tricks from our therapists and a great outlet for me. I realize that these therapists are not technically there to council me, but they "get" what I'm talking about, and that's nice.
My thoughts about how having a child with special needs would define my life are on my mind, because I've had a big week for my business. A colossal week for my business. I've taken on a business partner who I know will have as much passion and work ethic as I have had and I am no longer running this one woman (and a few assistants) show! I can actually look forward to the future of the company and begin to put the ideas and dreams I had for it's future into play. Prior to this week, my brain stopped at how I was going to squeeze a single extra task into my schedule. I used to wonder how and when my dreams could possibly come to fruition when I was doing it all. by. myself. ??? I'm beside myself with excitement. I have help, I have people I trust, and I'm energized to get it all under way! We're also starting a blog, which I'll announce to the readers here, so you can follow our progress if it interests you and maybe even get some inspiration for some of your own parties. Another good friend of mine is going to help me manage that and infuse it with lots of creativity and inspiration, in addition to sharing what fun, new events we've been up to.
Well...that is all for now. My head is spinning. I have new logos and fonts on the brain. I have plans for the future on the brain. I have...too much on the brain and need to work to shut it off for a little while. Does this happen to you? The brain spin?? What do you do to calm your brain and settle down?
Mama needs to get some sleep.... :)
Wednesday, October 19, 2011
Wednesday, October 12, 2011
Hot Potato
My son Elijah has an issue called "Tactile Defensiveness". It's a sensory "sensitivity", which is I guess, one way to explain it. Basically, he doesn't like the feel of certain things in or on his hands. It's partly why he scoots around on his belly using his forearms and toes, instead of pushing up to a crawl position on all fours. He doesn't seem to love the feel of all of the weight in his palms. He does push up to all fours now (newish milestone), but he doesn't use it as a mode of transportation yet. He eats baby puffs like a pro now, but if you drop a little food on his high chair tray, he immediately swipes at it and throws it off as if to say, "Ew! Yucky! Get that off of here." It's frankly a little reminiscent of that old game, "Hot Potato", where you have to try to get rid of the potato as fast as possible. The self feeding is slow going. The day we'll be able to go to a restaurant and plop down a few pieces of fruit, some beans and a couple of crackers and just let Elijah eat on his own will truly be a day for glorious celebration- because it feels like that day will never arrive. In fact, I looked at our Occupational Therapist this week and said, We have to get him to be able to eat some cake by his second birthday. He will be able to eat cake by his second birthday, won't he? She can't promise me that he will, but she did promise that he'll get there eventually. That eventually he'll do it all. For now, he's making progress and the progress is huge. (Don't forget to pause the music player at the bottom of the blog before watching the video...)
I don't get a chance to talk about my feelings a whole lot. I'm too busy. I'm raising boys, running a business, working a job and trying to make enough time for my husband, myself, and my friends so I don't lose my mind by going without free time. In those times of getting together with my friends and family, I don't try to avoid my feelings or avoid talking about Elijah and how I might be feeling about his progress. It's just simply that I run out of time. What's first and foremost in importance to me is the catch up- the fun, reportable news about a new craft project or how hard yoga was last week or the thing that my hubby said that pissed me off (Okay...not MY hubby. But A Hubby. Anyone's Hubby. The generic idea of a hubby who might possibly piss someone off. Not me, though. ...Not you either. Just need to cover my bases and make sure I point out that these are hypothetical things I might catch up on. You get it.) Since time usually runs out before I can even get to talking about how I might be feeling about Elijah's progress, I end up saving it for my blog. It's semi-cathartic to write it all down, and even though I usually don't hear back from 99% of the people reading this, I have some hope that by putting it all out there that maybe I'll give some perspective that wasn't there before, or possibly reach someone who is feeling exactly like I am- because there is comfort in that. As much help as it is to write it all down though, it's really not enough all of the time. I need feedback. I need someone to remind me when I'm having a down moment that Elijah is perfect, but that everything is going to take longer. And that just because it takes longer doesn't mean he won't do it all. That one day I will look back and think, I should have cherished it even more than I did. But, I just don't seem to have time for these conversations. So, I stay up late with a glass ofwine water (...okay, wine), sit down in front of my computer, and then just write. Usually I'm a little surprised at what comes out.
I made a commitment to myself to be honest and upfront about my feelings on this blog. There is a lot that I censor myself about. I censor myself because I don't want to hurt people's feelings. Sometimes, however, I will hurt someone's feelings by talking about my own. I am not always going to say the perfect thing- in life or on this blog. You are not always going to say the perfect thing either. (Again, a hypothetical "you") We will not always say the right, or the perfect thing. That is because I am human and flawed. In the past when I've talked about real-life scenarios for the sake of processing them or sharing them for others to process, I have inadvertently hurt a few people's feelings. I know this because they told me. One person even told me she can't read my blog anymore. This is tough for me. I have a lot of feelings about that, but I'll censor saying why.
Real life scenario: I hold my breath everytime I go out in public with Elijah, dreading when the question is going to come..."Oh how cute! How old is he?" When I say 17 months, I watch the wheels spinning in that person's brain- adding up why he isn't walking or talking yet. Sometimes people will go so far as to ask if he's walking or running or talking yet. Usually I just say, "No. Elijah has developmental delays, so it'll take him longer to do all of those things." I find that strangers handle this more gracefully than the words, "He has Down syndrome so it'll take him a little longer to do all of those things." I was at my mechanic last week and I had both of the boys with me. The guys were joking with Christian and admiring Elijah when the dreaded, "How old is he now?" question came up. Since I actually know these guys a little bit, and Christian even goes to school with one of the mechanics' sons, I gave the whole answer and told them that Elijah has Down syndrome. They, like most people, didn't know anything about Down syndrome and had a lot of questions/comments. There was the question of severity. He doesn't seem to have a very severe case of it. I always have to take a little breath before commenting on this one, because I really don't want to come off sounding like I'm trying to school someone or embarrass them or sound condescending. I shared that a person either has Down syndrome or they don't. There is no level of severity to it. Down syndrome is simply the existence of an extra chromosome in a person's cells. There are varying levels of cognitive ability and some people with Down syndrome can do a great deal with their lives: graduate from college, have a job, get married, while others are more dependent on a caretaker. The reality is that we just don't know what Elijah's cognitive ability is yet because he's too young. What I do know is that he seems pretty darn smart to me. He "gets" a lot of things. He is interested in and motivated by people, and quickly and easily reacts to them. I feel that he will have a great deal of cognitive ability, and so I say that (in this case, to the mechanics.) Immediately they seemed to relax. The idea of someone "suffering" or being "disadvantaged" (which Elijah is neither, in my opinion) is like the game of Hot Potato. People want it off their plate.
Trips out in public are sometimes a little more awkward, and I don't always want to answer the questions, but I get a sense that it's great for people to be seeing Elijah- that he is changing minds about how much of a "sob story" it is to have Down syndrome. I keep off of the heavier issues and save my feelings about it all for those cherished few conversations and this blog. And although the following pictures have absolutely nothing to do with this post, I just have to share a few cute ones we took with the boys last weekend.... :)
And my favorite one...
Oh yeah....and when I went to go pick up my car, the mechanic gave me 50% off.
Hot Potato?
I don't get a chance to talk about my feelings a whole lot. I'm too busy. I'm raising boys, running a business, working a job and trying to make enough time for my husband, myself, and my friends so I don't lose my mind by going without free time. In those times of getting together with my friends and family, I don't try to avoid my feelings or avoid talking about Elijah and how I might be feeling about his progress. It's just simply that I run out of time. What's first and foremost in importance to me is the catch up- the fun, reportable news about a new craft project or how hard yoga was last week or the thing that my hubby said that pissed me off (Okay...not MY hubby. But A Hubby. Anyone's Hubby. The generic idea of a hubby who might possibly piss someone off. Not me, though. ...Not you either. Just need to cover my bases and make sure I point out that these are hypothetical things I might catch up on. You get it.) Since time usually runs out before I can even get to talking about how I might be feeling about Elijah's progress, I end up saving it for my blog. It's semi-cathartic to write it all down, and even though I usually don't hear back from 99% of the people reading this, I have some hope that by putting it all out there that maybe I'll give some perspective that wasn't there before, or possibly reach someone who is feeling exactly like I am- because there is comfort in that. As much help as it is to write it all down though, it's really not enough all of the time. I need feedback. I need someone to remind me when I'm having a down moment that Elijah is perfect, but that everything is going to take longer. And that just because it takes longer doesn't mean he won't do it all. That one day I will look back and think, I should have cherished it even more than I did. But, I just don't seem to have time for these conversations. So, I stay up late with a glass of
I made a commitment to myself to be honest and upfront about my feelings on this blog. There is a lot that I censor myself about. I censor myself because I don't want to hurt people's feelings. Sometimes, however, I will hurt someone's feelings by talking about my own. I am not always going to say the perfect thing- in life or on this blog. You are not always going to say the perfect thing either. (Again, a hypothetical "you") We will not always say the right, or the perfect thing. That is because I am human and flawed. In the past when I've talked about real-life scenarios for the sake of processing them or sharing them for others to process, I have inadvertently hurt a few people's feelings. I know this because they told me. One person even told me she can't read my blog anymore. This is tough for me. I have a lot of feelings about that, but I'll censor saying why.
Real life scenario: I hold my breath everytime I go out in public with Elijah, dreading when the question is going to come..."Oh how cute! How old is he?" When I say 17 months, I watch the wheels spinning in that person's brain- adding up why he isn't walking or talking yet. Sometimes people will go so far as to ask if he's walking or running or talking yet. Usually I just say, "No. Elijah has developmental delays, so it'll take him longer to do all of those things." I find that strangers handle this more gracefully than the words, "He has Down syndrome so it'll take him a little longer to do all of those things." I was at my mechanic last week and I had both of the boys with me. The guys were joking with Christian and admiring Elijah when the dreaded, "How old is he now?" question came up. Since I actually know these guys a little bit, and Christian even goes to school with one of the mechanics' sons, I gave the whole answer and told them that Elijah has Down syndrome. They, like most people, didn't know anything about Down syndrome and had a lot of questions/comments. There was the question of severity. He doesn't seem to have a very severe case of it. I always have to take a little breath before commenting on this one, because I really don't want to come off sounding like I'm trying to school someone or embarrass them or sound condescending. I shared that a person either has Down syndrome or they don't. There is no level of severity to it. Down syndrome is simply the existence of an extra chromosome in a person's cells. There are varying levels of cognitive ability and some people with Down syndrome can do a great deal with their lives: graduate from college, have a job, get married, while others are more dependent on a caretaker. The reality is that we just don't know what Elijah's cognitive ability is yet because he's too young. What I do know is that he seems pretty darn smart to me. He "gets" a lot of things. He is interested in and motivated by people, and quickly and easily reacts to them. I feel that he will have a great deal of cognitive ability, and so I say that (in this case, to the mechanics.) Immediately they seemed to relax. The idea of someone "suffering" or being "disadvantaged" (which Elijah is neither, in my opinion) is like the game of Hot Potato. People want it off their plate.
Trips out in public are sometimes a little more awkward, and I don't always want to answer the questions, but I get a sense that it's great for people to be seeing Elijah- that he is changing minds about how much of a "sob story" it is to have Down syndrome. I keep off of the heavier issues and save my feelings about it all for those cherished few conversations and this blog. And although the following pictures have absolutely nothing to do with this post, I just have to share a few cute ones we took with the boys last weekend.... :)
And my favorite one...
Oh yeah....and when I went to go pick up my car, the mechanic gave me 50% off.
Hot Potato?
Wednesday, October 5, 2011
Elijah's Chariots
It is that time of the year...the annual "Buddy Walk" to support the Down syndrome Association of Los Angeles is just around the corner! The Down syndrome Association of Los Angeles, or DSALA, is a non profit organization devoted to enhancing the welfare of people with Down syndrome and their families through the development of education, counseling, employment and recreational programs. They are also committed to helping increase public awareness, understanding and acceptance of Down syndrome.
Last year, Elijah was just 7 months old when we participated in the Buddy Walk- not knowing what we were getting ourselves into. We had a small, but mighty, group of close friends and family participate in the walk with us...which is really a slow trot around a track- we might be talking about a quarter of a mile here. Certainly, we're not participating in a physically challenging race. ha ha! (Click here to read about our experience at the Buddy Walk last year.) The Buddy Walk this year is coming up on November 13th at the Santa Anita Racetrack and I am beginning the wrangling. Last year we witnessed so many creative and loving ways that families supported and honored their family member with Down syndrome. We saw heartwarming T-shirts, signs, and even a Pirate ship float to carry some adorable little boys!! (Yes- Sarah, if you're reading, I now know it was you. Which is so funny, because I didn't know you then. But, I should have figured that anyone who was going to go to the trouble of making a pirate ship float and wear pirate garb, were my kind of people!!!) So, this year, I've re-vamped our team name. It was formerly "Team Elijah", but this year is "Elijah's Chariots". I kind of liked the multiple implications of the name: In the Bible, Elijah never actually dies. He is escorted into Heaven by chariots. Kinda love that. Then, there is the idea that that our Elijah isn't walking yet. I like the idea that we will be his chariots for the Buddy Walk this year. Double entendre anyone? :)
So, the time is nearing, and while I have visions of a chariot float (Note to self: Add to the Honey-Do list asap...), T-shirts with some "Elijah's Chariots" logo on it and signs bearing my youngest's contagious smile, I need to turn to you-my family, my friends, and my readers (perhaps just a fancy way of saying my friends and family. LOL!) for some help. I have always been the type of person who loves a good cause. Whenever I can, I'm donating to friends' races for Breast Cancer or Wheelchair Missions, Multiple Sclerosis and Sjogren's campaigns. However, until I needed the support and aid of a great cause, I didn't have a true and personal understanding of how much these non-profit organizations can do. Now that I do, I am putting my heart into it. I am asking anyone who reads this to consider putting your heart into it also. If you are moved, consider clicking on this link and donating a small token to aid a great and worthy organization:
http://buddywalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=487077&lis=0&kntae487077=D95D291532A1402AB196A7E6DE0A3C7A
If you are interested in joining our team and participating in the walk with us, we will welcome you with open arms. Email me if you're interested and I haven't already given you a hard pitch. :)
P.S. Chariot and Chariot themed ideas welcome! Come on...You know a Party-Planner-by-trade-Mommy isn't going to go all subtle on you now, right??
New tricks: Frequent popping up onto his knees; Loving the bounce house
Wednesday, September 28, 2011
Struggle
Why is it that when you start a day off on the wrong foot, it seems impossible to avoid the rest of the day from becoming a complete dump? Yesterday was one of those days- despite my best efforts to "reset" and move on. Today isn't faring so well either... Instead of becoming a broken record of woes, I'll remind myself that Struggle can't be avoided. No matter who you are. No matter how "zen" you try to make yourself. I'll remind myself that it has been through the struggle, that true clarity and growth has happened. Now, my yesterday and today struggles are all little things: waking up late and running 10 minutes behind for the rest of the day, a pissed off client, a lost ipod, a rude customer service guy while trying to pay mortgage (Not sure anything makes my blood boil more...), etc. However, it's often the little things that get under your skin the most. It's on days like this that I need to counter with the things that calm me down and set my world back on it's axis. Focusing on my kids is the quickest way to Now. Kids just live in the moment. They may anticipate big events and look forward to them, but basically, they are in the moment. Right now. When did it become so hard to stay in the now? When did we begin to need things like yoga in our life to bring us back to center? When we got married? Bought a house? Had a kid? It's happened so gradually over time that I can't recall when or how it got so difficult to lie on the floor and just be. My mind races a million miles a second of what I need to be doing, what I haven't done, mortgage, taxes, insurance, school, how to be a better Mom, how to be a better Wife, how to be a better person... I find myself connecting with friends on Facebook often. It may seem out of the blue to state that, but the reason is this: There is comfort in knowing that I'm not alone, and that I'm not the only one who struggles, or has a bad day, or has a beautiful day that I just have to share. Social network has it's own problems, I know. But to know that Thea has a headache, or Lori's baby boy is rolling over, or that Kathy was finally able to upload all of her photos is a small gift of the everyday. The idea that we are all in it together.
While I'm struggling to remain in the present, my boys just are. As a result, I get surprised by what they're learning and what new tasks they're accomplishing. We had a phenomenal week with Elijah again. This little guy is on a roll. In addition to working on pulling to a stand, pointing, and sitting strongly now, he also shocked and surprised me with pointing out prompted body parts. I knew that he knew where my nose was, but I threw in "eyes" and he pointed right to them, then I said "mouth"- pointed right to it, "head"- pointed right to it. We hadn't even been specifically working on these things!! (Call it second time Mommy brain--I sometimes completely forget all of the little things I obsessively worked on with Christian, and then think "Oh yeah- I should show Elijah how to high five."--which he does, BTW.) :) We also finally got the clearance to add an additional day of Physical Therapy. So now he'll have PT twice a week, OT once a week and the Child Development Therapist once a week. I have been pushing for more PT, because that is where he's furthest behind. It's all good...he'll eventually "get there".
Climbing into cubby spaces and standing up!
Christian is becoming a little man in his own right. He asks the most interesting questions- ones that are challenging to explain. Like "How do the telephone poles work?" Yikes! I barely know, and then to realize that there is a whole other system designed to make cell phones work, and do I explain that too??...Keep it simple, Jen. Keep it simple. After I finish my explanation, he usually says (while his eyes show him processing the information), "Oh. I see." Really?? :) You do?? He and I have had a good week- I got to take him rollerskating for the first time with a couple of friends as a fundraiser for his preschool and I gave him his first haircut with a pair of clippers. (I have always cut his hair- with scissors- and thought I should try the clippers but was just too nervous. Thanks to a new clipper set from my Grandmommie, I took the plunge!)
Does the boy know how to take a great "before" and "after" picture, or what??!
First skates, with friend, Abby
Considering the rink...
I will continue to take a time out from work to sit and play on the floor with my kids and be reminded of what life was like before the endless swirl of events started happening in my head, I will continue to make it a priority to get to my yoga practice- both for the physical benefits, but also for the mental practice of being in the moment, and I will continue to struggle- sometimes despite my best efforts. Maybe I'll even update my Facebook status. Perhaps it should read:
Jennifer Garrett-Currier is.
(Underline, italic and bold the IS.)
Too bad Facebook doesn't have an underline, italic or bold feature. You know this Mama likes to use them...
While I'm struggling to remain in the present, my boys just are. As a result, I get surprised by what they're learning and what new tasks they're accomplishing. We had a phenomenal week with Elijah again. This little guy is on a roll. In addition to working on pulling to a stand, pointing, and sitting strongly now, he also shocked and surprised me with pointing out prompted body parts. I knew that he knew where my nose was, but I threw in "eyes" and he pointed right to them, then I said "mouth"- pointed right to it, "head"- pointed right to it. We hadn't even been specifically working on these things!! (Call it second time Mommy brain--I sometimes completely forget all of the little things I obsessively worked on with Christian, and then think "Oh yeah- I should show Elijah how to high five."--which he does, BTW.) :) We also finally got the clearance to add an additional day of Physical Therapy. So now he'll have PT twice a week, OT once a week and the Child Development Therapist once a week. I have been pushing for more PT, because that is where he's furthest behind. It's all good...he'll eventually "get there".
Climbing into cubby spaces and standing up!
Christian is becoming a little man in his own right. He asks the most interesting questions- ones that are challenging to explain. Like "How do the telephone poles work?" Yikes! I barely know, and then to realize that there is a whole other system designed to make cell phones work, and do I explain that too??...Keep it simple, Jen. Keep it simple. After I finish my explanation, he usually says (while his eyes show him processing the information), "Oh. I see." Really?? :) You do?? He and I have had a good week- I got to take him rollerskating for the first time with a couple of friends as a fundraiser for his preschool and I gave him his first haircut with a pair of clippers. (I have always cut his hair- with scissors- and thought I should try the clippers but was just too nervous. Thanks to a new clipper set from my Grandmommie, I took the plunge!)
Does the boy know how to take a great "before" and "after" picture, or what??!
First skates, with friend, Abby
Considering the rink...
I will continue to take a time out from work to sit and play on the floor with my kids and be reminded of what life was like before the endless swirl of events started happening in my head, I will continue to make it a priority to get to my yoga practice- both for the physical benefits, but also for the mental practice of being in the moment, and I will continue to struggle- sometimes despite my best efforts. Maybe I'll even update my Facebook status. Perhaps it should read:
Jennifer Garrett-Currier is.
(Underline, italic and bold the IS.)
Too bad Facebook doesn't have an underline, italic or bold feature. You know this Mama likes to use them...
Monday, September 19, 2011
Bragging Rights
I had to immediately brag blog. Elijah started pulling to a stand today!!!!! It's been a banner week. It all started with my realization last Monday that Elijah would sit (without immediately crawling out of it) as long as he was sitting on wet grass. So, Monday, Tuesday and Wednesday, we had at least 30 minutes of straight sitting each day (on wet grass). By Thursday, he was sitting anywhere (No grass necessary)-content not to crawl right out of it. But today was a biggee. Today, he started pulling himself up to a stand right in front of my eyes (And our Child Development Specialist's eyes- It was nice to have a witness!!) As long as he had something to give himself a little leverage and with the tiniest of help positioning his feet, he was pulling up!! This afternoon, I was steadying him so he didn't collapse back down, but by TONIGHT, he was standing pretty strongly. Strongly enough, in fact, that I was able to get these pictures:
I can't believe it! I'm honestly surprised by how quickly he started moving into this milestone. I knew that even though he wasn't achieving any big milestones for awhile there, that he was gaining strength. That strength is coming through today and with some good motivation (Mommy cheering squad & brother in the bath) he was bound and determined to do his thing.
After Elijah's bath, I got him into PJ's and read him his stories (Tonight, BTW, he pointed to the Puppies and used his little pointer finger to push the buttons that make sounds in one of the books-another little milestone), then put him into bed while I turned my attention to Christian. Christian and I finished up his bedtime routine and came walking into their room to discover that Elijah had pulled himself up onto his knees and was hanging out on the railing of the crib!!!
All. by. himself!!!!! I have been trying to show him how to do this for a little while now. He was always so excited when I would get him into the position where he could see around the room, but tonight he managed it himself! I had trouble getting a good picture of this- in part because of the low lighting, but also because Elijah was bouncing on his knees with excitement. Perhaps a video is better suited for this moment (Don't forget to scroll to the bottom of the page and pause the music player.):
The week was amazing--not only because of the many milestones that Elijah is tackling right now, but also because of the many things happening for Christian now too! First of all, Christian is loving school this year. It is so nice to hear how much he loves it. He even asked on a day off if he could go to school. One day last week when I came to pick him up, he wasn't quite ready to leave and sat down where they do circle time in his class. He sat back on his hands a bit, took a deep sigh and said, "It was a really great day, Mom." My heart melted just a little bit. It was so great to hear that, especially when last year's start was a little rough.
On Friday, I took my first Elementary school tour in preparation for Kindergarten for Christian next year. Our local public school is an under achieving school that is in really sad shape (I'm not referring to it's physical condition, though that is sad too.) So, I'll be having to apply by lottery to local Public Charter schools and by Open Enrollment for other nearby public schools. It's going to be a push to get him in somewhere that I think he might be able to get a decent education. So, I took my first tour. Beside the crocodile tears that were welling up behind my eyes, it went pretty well. There is a lot to think about, and even though it would be easy to shut down over the amount of information I have to get, I feel strongly that I need to stay on track in getting applications in once that process begins. I'm sure there is going to be a lot of nail biting in my future...
Friday afternoon, I took Christian for his first Hip Hop class of the year (He tried it last year, and due to...lack of focus, we had to say nevermind.) This year I had high hopes that a year's worth of maturity would go a long way. Well...we will see. There was still quite a bit of not paying attention, but there was some following of directions...
The teacher gave me a wink after class and said that Christian got a sticker and promised he would listen more next week. Gulp. Here's hoping...
The funny thing is, as soon as class was over, I asked Christian to show me some moves and he was happy to accommodate!
Pretty awesome if you ask me. My boy may not be the most focused in class, but when he applies himself, he's got some Moooves!!
I can't believe it! I'm honestly surprised by how quickly he started moving into this milestone. I knew that even though he wasn't achieving any big milestones for awhile there, that he was gaining strength. That strength is coming through today and with some good motivation (Mommy cheering squad & brother in the bath) he was bound and determined to do his thing.
After Elijah's bath, I got him into PJ's and read him his stories (Tonight, BTW, he pointed to the Puppies and used his little pointer finger to push the buttons that make sounds in one of the books-another little milestone), then put him into bed while I turned my attention to Christian. Christian and I finished up his bedtime routine and came walking into their room to discover that Elijah had pulled himself up onto his knees and was hanging out on the railing of the crib!!!
All. by. himself!!!!! I have been trying to show him how to do this for a little while now. He was always so excited when I would get him into the position where he could see around the room, but tonight he managed it himself! I had trouble getting a good picture of this- in part because of the low lighting, but also because Elijah was bouncing on his knees with excitement. Perhaps a video is better suited for this moment (Don't forget to scroll to the bottom of the page and pause the music player.):
The week was amazing--not only because of the many milestones that Elijah is tackling right now, but also because of the many things happening for Christian now too! First of all, Christian is loving school this year. It is so nice to hear how much he loves it. He even asked on a day off if he could go to school. One day last week when I came to pick him up, he wasn't quite ready to leave and sat down where they do circle time in his class. He sat back on his hands a bit, took a deep sigh and said, "It was a really great day, Mom." My heart melted just a little bit. It was so great to hear that, especially when last year's start was a little rough.
On Friday, I took my first Elementary school tour in preparation for Kindergarten for Christian next year. Our local public school is an under achieving school that is in really sad shape (I'm not referring to it's physical condition, though that is sad too.) So, I'll be having to apply by lottery to local Public Charter schools and by Open Enrollment for other nearby public schools. It's going to be a push to get him in somewhere that I think he might be able to get a decent education. So, I took my first tour. Beside the crocodile tears that were welling up behind my eyes, it went pretty well. There is a lot to think about, and even though it would be easy to shut down over the amount of information I have to get, I feel strongly that I need to stay on track in getting applications in once that process begins. I'm sure there is going to be a lot of nail biting in my future...
Friday afternoon, I took Christian for his first Hip Hop class of the year (He tried it last year, and due to...lack of focus, we had to say nevermind.) This year I had high hopes that a year's worth of maturity would go a long way. Well...we will see. There was still quite a bit of not paying attention, but there was some following of directions...
The teacher gave me a wink after class and said that Christian got a sticker and promised he would listen more next week. Gulp. Here's hoping...
The funny thing is, as soon as class was over, I asked Christian to show me some moves and he was happy to accommodate!
Pretty awesome if you ask me. My boy may not be the most focused in class, but when he applies himself, he's got some Moooves!!
Wednesday, September 14, 2011
Little Breakthrough
It's only Wednesday, and already I feel like we've had a big week. Monday afternoon, during Elijah's therapy appointment with our Child Development Specialist (CDS), I told her about how Elijah sat for a 10 minute stretch in the grass last week. The only defining thing I could think of, was that this particular grass had been damp. The CDS said, "Well maybe it's specifically wet grass he doesn't care for, and therefore didn't want to crawl around in it." Ummm....Lightbulb. I really cannot say why that had not fully occurred to me. So, we decided to test the theory: I turned on the sprinklers in the front yard for a minute or two, brought out a waterproof blanket for the therapist and I, and plopped Elijah down in the damp grass. Theory proven. He sat for thirty minutes straight, no fussing, no escape attempts. Ah-ha! By the time I saw our Occupational therapist the next day, it was our new trick. The OT was nearly as excited as I was that we ave found a way to make Elijah sit. Now that I have a way to make him sit, he can get stronger and will eventually be so strong that sitting won't be taxing for him anymore--then he will probably want to sit. As she said, "The one who manipulates first, wins!" Woohoo- Score 1 for Mommy. I can't wait to show our Physical Therapist on Friday!!
Elijah is also taking things out and putting them back into a box...another small milestone that we celebrate around here...
Christian seems to be loving school. When I picked him up today, he wasn't quite ready to leave. He sat down in the middle of his class and said, "It was a pretty great day, Mom." He blows my mind these days. Some of the things he says are so smart and so wise. One of my favorite observations this week, was as we were leaving school today. Christian looks off to our right and says, "I want to play that game, Mom." I looked over and noticed 2 tetherball courts. Deep seeded memories of tetherball humiliation came rushing back to me. I laughed and said, "Yeah...I used to get hit in the head a lot when I played that game." He mulled that over and then said, "I think you should back up then, Mom."
Right you are, Little Man....Right you are.
I'm going to briefly touch on another thing that came rushing back to me this week: I saw a video posted by a young girl on You Tube, called "Retarded." In it she never speaks, she simply holds up post-it notes of all of the words that are used as descriptions for the word "Retarded" in the Urban Dictionary. She looks sad as she she holds up words like "useless", "waste of time", "mindless", etc. She then reveals that her brother has Down Syndrome. And Autism. She reveals that he is her world. That he has shown her what she wants to do with her life. That he is her biggest inspiration. Unfortunately, her brother is non-verbal, so she is his "voice". He is lucky to have her. But...I think she is very lucky to have him too. I was struck in particular by this video not because it's another plea to stop people from using phrases like, "That's retarded," but because she is positively affected as a result of having a brother with special needs. When I first received Elijah's diagnosis, I worried how it would affect Christian. Would he feel overshadowed by the amount of therapies and special programs Elijah would have to be part of? Would he be able to have a brother he could relate to? Play with? However, when I connected with real-life families who were living with a child with Down syndrome, I heard the opposite. I heard story after story of how compassionate and unbiased and inspired the siblings were. But, also how there was no "special treatment" when it came to just being a family. I heard story of brothers just being brothers...struggles over toys and everything. When I was only 21 weeks pregnant I talked to an aquaintance who had seen the same perinatologist I was seeing to monitor my pregnancy with Elijah. She flat out told me I should abort and that I should think about how "it will (negatively) affect Christian (if I had Elijah)." I try not to let that piss me off as much as it does. It pisses me off because a) ...(b, c,and d too) She has NO IDEA what she's talking about!!!!!!!!!!!!!! She doesn't personally know any families whose siblings were negatively affected by someone having Down syndrome. She is not an expert in the field. She's a bag of hot wind, who has no business suggesting I do anything!!!!!
Deep breath.
Composing myself...
Okay. What I remind myself is that she is Ignorant. She truly has no idea what she was talking about. I get angry about implications that my firstborn will get the short end of the stick or be overlooked, because it basically implies that I'm not going to do my job as a Mother very well. It is my job--whether or not I have one son who is at any kind of disadvantage or not--to parent both of my kids. To address each of their needs collectively and individually. Perhaps being an "older Mother" raised my odds for having a child with a genetic condition. But, being an "older Mother" helped me to have the wisdom to always aim to meet my kids where they are at. I don't worry anymore that Christian will feel second string to Elijah. That is not ever going to happen on my watch. Nor will he feel that he is better than anyone either. We are a family and we each have a role to play.
I saw that wind-bag of an aquaintance last week. She looked better than I have ever seen her (which, sadly, isn't really saying a lot) and so I remarked on how she is looking. We had one small exchange where she asked how the baby was (Elijah was there, but at the moment was off playing with Daddy.) I said, "Great!!" (Perhaps too enthusiastically) and got the heck out of Dodge. I know that, in part, my role in this world will be of practicing Tolerance. That, in part, I will have to let my light shine through who I am so that others might draw closer to see that Elijah...and others like him...are a blessing and not a drain. Meanwhile, there are young girls like the one in this You Tube video spreading messages of love. Spreading TRUTH.
Bring. it. on.
Sunday, September 11, 2011
Deep breath. Exhale. Smile.
Work has consumed my life lately. I finished 3 straight weeks of back to back events and am in desperate need of a more normal pace, filled with a lot more time spent with my boys! Last night, after I finished setting up a beautiful Bat Mitzvah Party space for one lucky little teenager, I headed home and was ready to cry when I realized that it was just late enough that I had missed my chance to say goodnight to my boys. Even though they have been spending their time primarily with Charles when I've been working (and not with a sitter), I felt guilty for the lack of quality time with them. So late last night, after the final hot pink chair cover was packed away and the last cotton candy-filled vase was boxed, I headed home knowing that the rest of the salvageable weekend would be spent just being "Mom" and lavishing them with attention. I woke up this morning and after everyone was clothed and fed, I decided I needed a little one on one time with Christian (well-timed with Elijah's nap...) I wedged him into my car between the bags of still un-returned chair covers and linens and headed off to a local farmers market. I am craving some domestic time, plain and simple. I also brought along my new birthday gift: a Canon SLR camera! I have been having sooooo much fun playing with it and actually capturing shots that my little "point and shoot" was never fast enough to get. The weather couldn't have been more gorgeous, my company couldn't have been more perfect and the fresh fruit, vegetables and herbs spread out on rows of tables at the market were a sight for sore eyes.
I bought zucchini, broccoli, onions, carrots and the most delicious Fuji apples. My mission was to prepare a little for the week ahead and try out the new recipe that caught my eye last week: "Simple Harvest Fried Rice". Christian and I perused the aisles and I had to give a couple of lectures about stealing, when I caught him pick a tiny piece of cauliflower off a bunch and pop it into his mouth (Secretly, I was proud. I mean, it was cauliflower, people. It was cauliflower and it made him smile.)
The free samples of cheesy-caramel corn nearly did us in. Who knew that cheese and caramel on popcorn was so insanely delicious?? Luckily the guy passing out the samples had a soft spot for Christian and he managed to get 4 servings during our trip! I think having this time today meant more to me because I haven't had a relaxed day like this in so long. I wanted to soak up all of the little moments and store them for reserve energy later. We finished out the day with a long, leisurely visit with Nana and PawPaw. Playing with my kids, catching up with my parents, and dinner together as a family made me feel so grateful for this relaxed day. My littlest man seemed to cherish the attention, and I was more than happy to give it to him too!
In between all of the workload craziness, we had another big moment last week: Christian started back to preschool.
I cleared my schedule to be the one to take him to his classroom and get him settled. He put up with my first day of school photo shoot session and seemed in good spirits until we pulled up to the school. As we got out of the car, he said, "I'm three, Mom. I need to be in the Orange door." (The class he was in last year.) So the real question becomes: How do you hold it together while you try to convince your child that growing up is the coolest, most fun thing in the world while on the inside you're screaming, Please slow down, this all happening way too fast?! But, I did what all Mothers have to do: I told him how cool it was to get new teachers and meet some new friends and that he would have so much fun, and I did it all with a smile. It is really cool to grow up, but it is also happening way too fast. This whole "school thing" brings a whole new level of parenting emotion with it. We made our way to his new classroom- the green door- and saw that this year, the name board was a large apple tree, with each students name written on an apple that they hang on the tree each morning. I tried to move away just a little bit from Christian and he started clinging to me with a death grip. I noticed Christian watching a little boy playing with a pirate ship nearby. I squatted down and asked, "Hi. What's your name?" He said with a very confident attitude, "I'm TJ!" I said, "Hi TJ! This is Christian." and he said, "I know him." (They were not in class together last year.) So, I said, "Oh. Did you guys meet out on the play yard last year?" He said, "Yeah." and then walked away to play with something else. Christian said, "But, I want to play with TJ, Mom!" So I suggested he go over and ask him to play with him. I was so proud to watch him release the death grip, walk over to TJ, ask to play, and then have TJ say yes. They walked back to the pirate ship nearly arm in arm. Oh my heart. It was hard not to cry right then and there.
I managed to say a quick goodbye- like ripping a band aid off and quickly walked out of the classroom. Once outside, I looked back through the window to see if it was meltdown central. Nope. He was fine. Still happily playing. I breathed a sigh of relief and walked back to the car. About a block later? The waterworks. What. on. earth? I swear, the emotions of this "school-thing" completely catch me off guard. I go into it thinking I'm totally fine, not feeling overly emotional, but I come out of it in an unexpected torrent of waterworks. About 3 hours later, as all was quiet on the home front and Elijah was napping and I was getting more work done in one sitting than I may have all summer, I was over it. This is great! Yay school!!! I have a tour of an elementary school for Christian on Friday. So, we'll see how I hold up under that pressure. Luckily, I'll have two friends with me...don't know if that will make it better or worse, considering they both have kids the same age and we've all been friends since our firstborns were 6 weeks old. Yeah...now that I put it that way, it might make it way worse...
Elijah is on a slow- sometimes very slow- but steady path. I've been very frustrated that he will not sit for any length of time. At first my therapists were convinced it was just that he doesn't want to. He doesn't sit, because he'd rather crawl (scoot) around. He is so obviously going where he wants, exploring his world, and getting into the things babies get into that I'm not worried, per se, but frustrated that he is missing out on an important learning and playing position. Over the last couple of weeks I've been challenging our therapists with other possibilities. Could it somehow be related to a sensory issue? Could it be related to the Nystagmus, an eye condition which we know can affect balance? They are taking my inquiries seriously and trying to think outside the box. Last week, I became even more convinced that it is not just a stubborn personality issue. I became convinced, because something made him sit still (not even while playing with much) in the grass, for about 10 minutes straight. Just the day before, he was scooting around in the grass, so I already know it's NOT because he doesn't like the feel of grass. But, something made him stay. I don't know quite what yet, but it was fun to watch. I kept saying to myself (outloud), I can't believe he is still just happily sitting there! I can't believe it! Finally, either because my friend Mary understood the incredulous undertone of my voice, or I was starting to babble like a crazy person, she remarked, "He doesn't normally do this?" No! He doesn't normally do this, but Yay he's doing it right now!!
The evidence: I didn't even need a fast, fancy camera for these shots...
I am so looking forward to this coming week, where some semblance of normalcy will return. Christian is back in preschool, I am back to teaching ballet and my event work is in the "regularly normal" category (and not the "def con 5" category), and Elijah's therapy schedule is back on track after a couple of cancelled/re-scheduled sessions. Deep breath. Exhale. Smile. Lots to look forward to... lots to blog about...Trip down NICU memory lane, Christian starts Boys Hip Hop classes, and the Elementary school tour.
Last thought of note: Things get crazy. Life is a complete rollercoaster. For my husband, that is not necessarily fun and while we joke that living with him is occasionally like living with a disorganized Nick Nolte character who never stops cursing, there is one thing that always puts a smile on his face. I love my husband even more when I watch how he melts with our children...
I bought zucchini, broccoli, onions, carrots and the most delicious Fuji apples. My mission was to prepare a little for the week ahead and try out the new recipe that caught my eye last week: "Simple Harvest Fried Rice". Christian and I perused the aisles and I had to give a couple of lectures about stealing, when I caught him pick a tiny piece of cauliflower off a bunch and pop it into his mouth (Secretly, I was proud. I mean, it was cauliflower, people. It was cauliflower and it made him smile.)
The free samples of cheesy-caramel corn nearly did us in. Who knew that cheese and caramel on popcorn was so insanely delicious?? Luckily the guy passing out the samples had a soft spot for Christian and he managed to get 4 servings during our trip! I think having this time today meant more to me because I haven't had a relaxed day like this in so long. I wanted to soak up all of the little moments and store them for reserve energy later. We finished out the day with a long, leisurely visit with Nana and PawPaw. Playing with my kids, catching up with my parents, and dinner together as a family made me feel so grateful for this relaxed day. My littlest man seemed to cherish the attention, and I was more than happy to give it to him too!
In between all of the workload craziness, we had another big moment last week: Christian started back to preschool.
I cleared my schedule to be the one to take him to his classroom and get him settled. He put up with my first day of school photo shoot session and seemed in good spirits until we pulled up to the school. As we got out of the car, he said, "I'm three, Mom. I need to be in the Orange door." (The class he was in last year.) So the real question becomes: How do you hold it together while you try to convince your child that growing up is the coolest, most fun thing in the world while on the inside you're screaming, Please slow down, this all happening way too fast?! But, I did what all Mothers have to do: I told him how cool it was to get new teachers and meet some new friends and that he would have so much fun, and I did it all with a smile. It is really cool to grow up, but it is also happening way too fast. This whole "school thing" brings a whole new level of parenting emotion with it. We made our way to his new classroom- the green door- and saw that this year, the name board was a large apple tree, with each students name written on an apple that they hang on the tree each morning. I tried to move away just a little bit from Christian and he started clinging to me with a death grip. I noticed Christian watching a little boy playing with a pirate ship nearby. I squatted down and asked, "Hi. What's your name?" He said with a very confident attitude, "I'm TJ!" I said, "Hi TJ! This is Christian." and he said, "I know him." (They were not in class together last year.) So, I said, "Oh. Did you guys meet out on the play yard last year?" He said, "Yeah." and then walked away to play with something else. Christian said, "But, I want to play with TJ, Mom!" So I suggested he go over and ask him to play with him. I was so proud to watch him release the death grip, walk over to TJ, ask to play, and then have TJ say yes. They walked back to the pirate ship nearly arm in arm. Oh my heart. It was hard not to cry right then and there.
I managed to say a quick goodbye- like ripping a band aid off and quickly walked out of the classroom. Once outside, I looked back through the window to see if it was meltdown central. Nope. He was fine. Still happily playing. I breathed a sigh of relief and walked back to the car. About a block later? The waterworks. What. on. earth? I swear, the emotions of this "school-thing" completely catch me off guard. I go into it thinking I'm totally fine, not feeling overly emotional, but I come out of it in an unexpected torrent of waterworks. About 3 hours later, as all was quiet on the home front and Elijah was napping and I was getting more work done in one sitting than I may have all summer, I was over it. This is great! Yay school!!! I have a tour of an elementary school for Christian on Friday. So, we'll see how I hold up under that pressure. Luckily, I'll have two friends with me...don't know if that will make it better or worse, considering they both have kids the same age and we've all been friends since our firstborns were 6 weeks old. Yeah...now that I put it that way, it might make it way worse...
Elijah is on a slow- sometimes very slow- but steady path. I've been very frustrated that he will not sit for any length of time. At first my therapists were convinced it was just that he doesn't want to. He doesn't sit, because he'd rather crawl (scoot) around. He is so obviously going where he wants, exploring his world, and getting into the things babies get into that I'm not worried, per se, but frustrated that he is missing out on an important learning and playing position. Over the last couple of weeks I've been challenging our therapists with other possibilities. Could it somehow be related to a sensory issue? Could it be related to the Nystagmus, an eye condition which we know can affect balance? They are taking my inquiries seriously and trying to think outside the box. Last week, I became even more convinced that it is not just a stubborn personality issue. I became convinced, because something made him sit still (not even while playing with much) in the grass, for about 10 minutes straight. Just the day before, he was scooting around in the grass, so I already know it's NOT because he doesn't like the feel of grass. But, something made him stay. I don't know quite what yet, but it was fun to watch. I kept saying to myself (outloud), I can't believe he is still just happily sitting there! I can't believe it! Finally, either because my friend Mary understood the incredulous undertone of my voice, or I was starting to babble like a crazy person, she remarked, "He doesn't normally do this?" No! He doesn't normally do this, but Yay he's doing it right now!!
The evidence: I didn't even need a fast, fancy camera for these shots...
I am so looking forward to this coming week, where some semblance of normalcy will return. Christian is back in preschool, I am back to teaching ballet and my event work is in the "regularly normal" category (and not the "def con 5" category), and Elijah's therapy schedule is back on track after a couple of cancelled/re-scheduled sessions. Deep breath. Exhale. Smile. Lots to look forward to... lots to blog about...Trip down NICU memory lane, Christian starts Boys Hip Hop classes, and the Elementary school tour.
Last thought of note: Things get crazy. Life is a complete rollercoaster. For my husband, that is not necessarily fun and while we joke that living with him is occasionally like living with a disorganized Nick Nolte character who never stops cursing, there is one thing that always puts a smile on his face. I love my husband even more when I watch how he melts with our children...
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