He doesn't *Think* he can. Walk, that is.
Elijah has been on the verge of independent walking for quite some time, and as all of his therapists and I've suspected, it's a confidence issue. Today, he stood up in the middle of the room, picked up a basket and walked....probably because it felt like he was holding onto something that was stabilizing him. Of course, I didn't catch THAT time on video. But, I did catch this little glimpse...
Now we just need to get him to think he can do it, without holding on. He's so close!! Come on baby boy:
I think I can, I think I can...just like the Little Engine Who Could, you can too!!
Thursday, May 2, 2013
Thursday, April 25, 2013
He's THREE
How is he THREE??!! My sweet Elijah turned THREE on Saturday. The time has flown and although he has given me a little more time to savor him as a baby, because of his developmental delays, it has still gone lighting fast. It seems as if overnight he has become a Toddler. Although he is still not independently walking, he is sooooo close and he is soaring in so many areas. He wants his independence, he manages to communicate his needs and he has quite a sense of humor. We threw a party for him at Gymboree Play and Music. He LOVES music..and play, for that matter, so the theme I thought up? Music and Play. Of course! :)
Some of the party details: I started with the idea of a VIP backstage pass as an invitation...
Mailed it off... (But tried multi-tasking too many things at once and never got invitations out to two of the most important guests- my own nephew and one of Elijah's "besties"...)
I created a fun eating area with Electric guitar centerpieces that I made, and made use of existing Gymboree colors (while adding some other shades of blue) in our plates, utensils and linens- blues, purple, black and orange!
I purchased straw cups for all of the kiddos, because that is what Elijah uses and created a party favor inspired by my little man. We gave bags filled with a toy vibrating microphone and a CD of Elijah's favorite sing-a-long songs.
The rest was all about play and enjoyment. It was fun to see the kids having so much fun!
Playing with Daddy...
My adorable Nephew made it to the party, despite the unmailed invitation :(
Circle time...
Paying attention...
Big brother getting in on the play action!
Climbing!
He loves the parachute!!
It was the perfect end to an anxiety ridden week. At the age of three, kids who have a diagnosis of developmental delays transition from receiving services through an organization in California called "The Regional Center" to services that are provided through a child's school district. We are in the Los Angeles Unified School District. We've been getting such amazing services for Elijah that the transition is a bit like owning a fully loaded Mercedes and then being told: "Here is your brand new Pinto. Oh! And by the way, we're not entirely sure if it will run. And the air conditioning doesn't work. Plus you'll have to kick the door to get it open..." BUT....at the end of the day, both a Mercedes and Pinto can get you from point A to point B, so as long as that happens, we're good. My general mantra has been, It's PRESCHOOL. How bad can they F it up?? Perhaps that's cynical, but I think at this point I'd rather be pleasantly surprised.
THREE. Wow.
Monday, April 15, 2013
Carnival Complete.
At the start of the school year, I was fired up to be involved. My son, Christian, got into Kindergarten at our #1 school of choice and I wanted to find a way to "give back". I hoped that maybe there would be some place in the volunteering needs where I could use my experience as an Event Planner and Designer. I showed up to that first meeting, all ready to raise my hand. They passed out a sheet that had available positions open and I immediately noticed that "Carnival Chair" was wide open. Now, I know this is a big position, but I got excited, because it's exactly along the lines of what I do. Never mind that I've never specifically planned a "Carnival" or that as a Kindergarten parent I barely know a soul at the school... So, low and behold, they get to the portion of the meeting where they are doing a call for volunteers. People seem hesitant, and some reluctantly agree to take on positions. The mention of "Carnival Chair" comes up and I shoot my hand into the air, "I want to do it!" I practically shout. Everyone stares at me in shock for a moment. I think someone said, "Really?!" "Yes!" I said, "I'm really into it, it would be a lot of fun." You could see the room visibly relax. Well....7 months later, I know EXACTLY why. That sucker is a hell of a lot of work on probably one of the biggest, if not THE biggest fundraiser of the year. Um hmm. Flashback: I practically shouted, "I want to do it!"
Well, 300+ hours of free labor later, and...we had a Carnival. It was on Saturday. And it was spectacular.
I will admit that for a stretch of time, I was thinking that I was in over my head. I didn't have enough people helping, and I was doing too much on my own. I wanted to delegate, but I just didn't know enough people to say, Hey, I need some help here. I relied on the parents who had gone before me and who did know people and they were amazing. I called on my friends and my business partner and even my ballet students! I learned how to say, Help! I need help! and when someone asked how they could help, I was ready with a task or two or three.
I made changes to some of the carnival plans they have used in the past because I thought a few things might work better: I thought that even though it would cost a little more, that we needed a "Main Stage" area, that was a tented, covered area for the kids to perform their practiced songs. The school has never had any shade, and considering that the carnival takes place every year in April, it is often hot- last year was brutally so. The parent who was going to MC/DJ the event, had suggested a live auction and although it was just too late in the game to have any large live auction items, I came up with the idea to make 2 dimensional wood "surfboards" out of plywood, paint them different colors and then have all of the grades put their handprints on the surfboards. We would have one for each grade. Then, we would auction them all live at the carnival. This way, if they didn't go for much money, it wouldn't be too big of a deal. It wouldn't be embarrassing like a donated Hawaii trip only getting $200. So, we all agreed to give it a try and I set out to get these things made.
My business partner's Dad came through for me and cut all of the surfboards (Thank you, Larry!!), then I set to getting them painted. My vision was to stick with the color scheme I had designed to go with the theme I had come up with: California Adventure Carnival, with shades of blue, green, yellow and orange. Here's the first step:
Just about the time I was freaking out and feeling very exhausted and deflated by the whole carnival planning process, I began step #2: Getting the handprints on the surfboards. I set out with my small team of 4-6 ladies, and on a Monday morning, we stopped into each class, took a few minutes of their class time and got the kids handprints onto the boards.
The interactions I witnessed within those classrooms were nothing short of astounding and beautiful. Our school is a full inclusion model, which means that kids of all abilities- from those who are gifted to those who have special needs all learn in the same classrooms. Because they all grow up with each other, they don't see "difference" the way we adults do. They see each other as individuals. It's not "So-and-so" in a wheelchair. It's Joey who loves rock music and wearing hats. It's not "That girl" who has Down syndrome. It's Sophie who has a great sense of humor and loves Justin Bieber. I saw a handful of interactions of typically developing kids that weren't helping out a classmate because they had special needs, but were helping out a classmate, because they were friends. I was humbled and it confirmed for me just how important it is that my son, Christian is at this school. He needs this. He needs to be around all kinds of different so that he will grow up a responsible and compassionate adult. Nevermind what this school will mean for Elijah when he gets there. It will be great for him too. But, right now, I see the benefit more specifically for my typically developing child. My little surfboard project helped put all of the hours of carnival planning into perspective: This is what this is all for. This is for the kids. These kids- these warm and compassionate kids. I had a whole new second wind...
Phase 2 of the surfboard project:
We finally made it to Saturday. The weather was cooperating perfectly- even a slight chill to the air, instead of the dreaded 90 degrees. Weather reports called for a high of 72 with a cloudy morning, and a sunny break through around 2pm, and that is exactly what happened. Everything came together pretty smoothly, and I fought my typical "Type A, perfectionist" work ethic and mumbled my mantra: It's a Carnival.
I had no time or equipment (I forgot my camera...although I doubt I could have carried it around all day) to take quality pictures, but here are a few...
My beloved Entrance, with my handmade palm tree (Charles did the tree trunk and I did the leaves), the banner that a carnival committee member pulled out of her hat last minute, and the finished surfboard project (Oh yeah...and my cutie, Christian in his carnival tshirt):
I sent little pennant flags home with every single student in the school to decorate with their favorite thing about California and then strung them up around the main stage area. They looked really, really cute and this photo definitely doesn't do them justice.
The "back of the bleachers" project. Every year, the carnival committee covers the back of the bleachers with cardboard and paints something decorative on it. It was a BIG job and I was pretty skeptical that it could look good, but I created a simple "Walk of Fame" look for our bleachers and it came out okay...
We had games and food and crafts...like potting a plant. (Here, two volunteers showing a Kindergartner how to plant one...)
We had face painting... (The Principal did the face painting on the right. Talent beyond her job set, right?)
Then, we had - for the first time in the history of the school and my pride and joy: a Ferris Wheel!!! I didn't know if I could pull it off, but I found just the right size and it was a hit all day long! The "dunk tank" which featured a toilet that dumped water on someone's head if you hit the lever just right, was staffed by some of the school's teachers and administrators. Those people are rock stars in my book. It was even a little chilly when we started, but they rallied anyway.
My hubby Charles showed up with Elijah in the afternoon and even took the little guy for a ride on the Ferris Wheel. He loved it and I totally melted!! It might have been the cutest thing I've EVER seen...
I couldn't help but grin ear to ear as I walked the campus watching everyone enjoy themselves so much. It was everything I hoped for. Oh..and those little surfboards? Well, the MC auctioned them off, and all in all they went for almost $3000!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! When the first surfboard auctioned off for $550, I was jumping up and down and screaming like a lunatic. I was SO excited! I expected they would sell for $50...maybe $80, so to see them appreciated for the sentimental quality (all of the hand prints) and the craftsmanship (Come on...who doesn't like a cute surfboard?), I was ecstatic.
The carnival came to a close with hundreds of people still hanging out and dozens of people chipped in to help put things back in place. I was amazed at the community of people who were there to help. Although it may have been difficult in the planning to process to find and get help, the day-of was well in hand. The school has a definite sense of community and everyone pulled together to make sure things were back in place for school to resume on Monday. I had many people come up to me and thank me for all of the work I did...and I'm not gonna lie: It was A LOT of work. But, the appreciation was very much...well, appreciated. A thank you goes a long, long way. So, even though many of these people probably don't even know my blog exists, I am going to thank some people who chipped in and gave me a hand along the way:
Karen, Charles, Amy, Tom, Dan, Shannon, Tomiko, Lori, Kathy, Denise, Larissa, Sarah, Tiffany, Katie, Kerstyn, Sophie, Michele, Emi, Sara, Robin, Liz, Kelly, Paula, Stacy, Julie, Larry, Katherine, and my Mom- both for moral support and helping to watch the boys so I could fulfill my responsibilities! Thank you, thank you- for all being such an amazing support and willing to take time out of your life to help me in my volunteering efforts. Your help is sincerely appreciated.
And...lastly, to "Arthur", who sent me the nasty email about "How disappointed" you were that I was doing things differently? You suck. Period. You really don't get to have a nasty opinion when you haven't picked up even a pinky finger to help. There. I feel better already. I turned the other cheek to Arthur's nasty email and did not respond...which was probably the most adult thing I could do. However, I am happy to take this passive-aggressive moment to stick out my tongue and waggle my fingers at him on my public blog. :)
And, now, I plan to put my feet up and take a deep, relaxing breath. It's over and when I go back to my email, there will not be 100 new emails all with the title "Carnival" in them....
Well, 300+ hours of free labor later, and...we had a Carnival. It was on Saturday. And it was spectacular.
I will admit that for a stretch of time, I was thinking that I was in over my head. I didn't have enough people helping, and I was doing too much on my own. I wanted to delegate, but I just didn't know enough people to say, Hey, I need some help here. I relied on the parents who had gone before me and who did know people and they were amazing. I called on my friends and my business partner and even my ballet students! I learned how to say, Help! I need help! and when someone asked how they could help, I was ready with a task or two or three.
I made changes to some of the carnival plans they have used in the past because I thought a few things might work better: I thought that even though it would cost a little more, that we needed a "Main Stage" area, that was a tented, covered area for the kids to perform their practiced songs. The school has never had any shade, and considering that the carnival takes place every year in April, it is often hot- last year was brutally so. The parent who was going to MC/DJ the event, had suggested a live auction and although it was just too late in the game to have any large live auction items, I came up with the idea to make 2 dimensional wood "surfboards" out of plywood, paint them different colors and then have all of the grades put their handprints on the surfboards. We would have one for each grade. Then, we would auction them all live at the carnival. This way, if they didn't go for much money, it wouldn't be too big of a deal. It wouldn't be embarrassing like a donated Hawaii trip only getting $200. So, we all agreed to give it a try and I set out to get these things made.
My business partner's Dad came through for me and cut all of the surfboards (Thank you, Larry!!), then I set to getting them painted. My vision was to stick with the color scheme I had designed to go with the theme I had come up with: California Adventure Carnival, with shades of blue, green, yellow and orange. Here's the first step:
Just about the time I was freaking out and feeling very exhausted and deflated by the whole carnival planning process, I began step #2: Getting the handprints on the surfboards. I set out with my small team of 4-6 ladies, and on a Monday morning, we stopped into each class, took a few minutes of their class time and got the kids handprints onto the boards.
The interactions I witnessed within those classrooms were nothing short of astounding and beautiful. Our school is a full inclusion model, which means that kids of all abilities- from those who are gifted to those who have special needs all learn in the same classrooms. Because they all grow up with each other, they don't see "difference" the way we adults do. They see each other as individuals. It's not "So-and-so" in a wheelchair. It's Joey who loves rock music and wearing hats. It's not "That girl" who has Down syndrome. It's Sophie who has a great sense of humor and loves Justin Bieber. I saw a handful of interactions of typically developing kids that weren't helping out a classmate because they had special needs, but were helping out a classmate, because they were friends. I was humbled and it confirmed for me just how important it is that my son, Christian is at this school. He needs this. He needs to be around all kinds of different so that he will grow up a responsible and compassionate adult. Nevermind what this school will mean for Elijah when he gets there. It will be great for him too. But, right now, I see the benefit more specifically for my typically developing child. My little surfboard project helped put all of the hours of carnival planning into perspective: This is what this is all for. This is for the kids. These kids- these warm and compassionate kids. I had a whole new second wind...
Phase 2 of the surfboard project:
We finally made it to Saturday. The weather was cooperating perfectly- even a slight chill to the air, instead of the dreaded 90 degrees. Weather reports called for a high of 72 with a cloudy morning, and a sunny break through around 2pm, and that is exactly what happened. Everything came together pretty smoothly, and I fought my typical "Type A, perfectionist" work ethic and mumbled my mantra: It's a Carnival.
I had no time or equipment (I forgot my camera...although I doubt I could have carried it around all day) to take quality pictures, but here are a few...
My beloved Entrance, with my handmade palm tree (Charles did the tree trunk and I did the leaves), the banner that a carnival committee member pulled out of her hat last minute, and the finished surfboard project (Oh yeah...and my cutie, Christian in his carnival tshirt):
I sent little pennant flags home with every single student in the school to decorate with their favorite thing about California and then strung them up around the main stage area. They looked really, really cute and this photo definitely doesn't do them justice.
The "back of the bleachers" project. Every year, the carnival committee covers the back of the bleachers with cardboard and paints something decorative on it. It was a BIG job and I was pretty skeptical that it could look good, but I created a simple "Walk of Fame" look for our bleachers and it came out okay...
We had games and food and crafts...like potting a plant. (Here, two volunteers showing a Kindergartner how to plant one...)
We had face painting... (The Principal did the face painting on the right. Talent beyond her job set, right?)
Then, we had - for the first time in the history of the school and my pride and joy: a Ferris Wheel!!! I didn't know if I could pull it off, but I found just the right size and it was a hit all day long! The "dunk tank" which featured a toilet that dumped water on someone's head if you hit the lever just right, was staffed by some of the school's teachers and administrators. Those people are rock stars in my book. It was even a little chilly when we started, but they rallied anyway.
My hubby Charles showed up with Elijah in the afternoon and even took the little guy for a ride on the Ferris Wheel. He loved it and I totally melted!! It might have been the cutest thing I've EVER seen...
I couldn't help but grin ear to ear as I walked the campus watching everyone enjoy themselves so much. It was everything I hoped for. Oh..and those little surfboards? Well, the MC auctioned them off, and all in all they went for almost $3000!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! When the first surfboard auctioned off for $550, I was jumping up and down and screaming like a lunatic. I was SO excited! I expected they would sell for $50...maybe $80, so to see them appreciated for the sentimental quality (all of the hand prints) and the craftsmanship (Come on...who doesn't like a cute surfboard?), I was ecstatic.
The carnival came to a close with hundreds of people still hanging out and dozens of people chipped in to help put things back in place. I was amazed at the community of people who were there to help. Although it may have been difficult in the planning to process to find and get help, the day-of was well in hand. The school has a definite sense of community and everyone pulled together to make sure things were back in place for school to resume on Monday. I had many people come up to me and thank me for all of the work I did...and I'm not gonna lie: It was A LOT of work. But, the appreciation was very much...well, appreciated. A thank you goes a long, long way. So, even though many of these people probably don't even know my blog exists, I am going to thank some people who chipped in and gave me a hand along the way:
Karen, Charles, Amy, Tom, Dan, Shannon, Tomiko, Lori, Kathy, Denise, Larissa, Sarah, Tiffany, Katie, Kerstyn, Sophie, Michele, Emi, Sara, Robin, Liz, Kelly, Paula, Stacy, Julie, Larry, Katherine, and my Mom- both for moral support and helping to watch the boys so I could fulfill my responsibilities! Thank you, thank you- for all being such an amazing support and willing to take time out of your life to help me in my volunteering efforts. Your help is sincerely appreciated.
And...lastly, to "Arthur", who sent me the nasty email about "How disappointed" you were that I was doing things differently? You suck. Period. You really don't get to have a nasty opinion when you haven't picked up even a pinky finger to help. There. I feel better already. I turned the other cheek to Arthur's nasty email and did not respond...which was probably the most adult thing I could do. However, I am happy to take this passive-aggressive moment to stick out my tongue and waggle my fingers at him on my public blog. :)
And, now, I plan to put my feet up and take a deep, relaxing breath. It's over and when I go back to my email, there will not be 100 new emails all with the title "Carnival" in them....
Tuesday, March 26, 2013
Spring (I need a) Break
My workload has been crazy lately. Managing my schedule, between work, quality time with my family, and basic household chores is difficult enough as it is. Life decided to throw in "Dead Mini Van", "Buy a new car", and "Begin the IEP preschool transition process for my little guy" on top of the rest of the heap.
I got the news a couple of weeks ago that my Minivan would rest in peace after "throwing a rod". Apparently this is akin to dying a quick death. Engine dead. Too costly to bother repairing. It's just as well. I had been driving around terrified of the impending doom for quite some time, and frankly it was wearing on me. I was on my way with the boys to meet a new friend from the Down syndrome community for a playdate at her house, when just as I was cresting a large grade on a freeway, my van just...turned off. I began praying loudly as there was no place to pull off the freeway. Please God just let us get to the exit. Please God, Please God... We did get to the next exit- thankfully unharmed- and sat there waiting for what to do next as my heart beat began to slow back down to a normal pace. We got my car towed off to a nearby parking spot (it was a weekend- after mechanic hours. Of course.) and went for our playdate anyway.
The process of buying a new car and disposing of my old one was long and drawn out and a lot of money was spent on a crappy rental car- that thankfully was cheap and crappy, so that when I closed my finger into the door of it, didn't break my finger. See? The silver lining. But finally...FINALLY, I have a new (to me) car, that is problem-free, fuel efficient, and kinda cute. I sadly said goodbye to my roomy minivan with my ability to fit just about anything into the back of it, in exchange for a car I can rely on. I happily took that trade off.
And the license plate? I'm embracing it. It's even pretty true.
This week was rough. We have been gearing up for Elijah's transition to preschool, and finally had our IEP assessment. This assessment brings together a team of people- a psychologist, a Physical Therapist, an Occupational Therapist, an Adaptive PE teacher, and a Speech Therapist- to assess what your child is doing and what the best placement & goals for them would be within the public school system. Our assessment was on Tuesday, and I calmly packed up Elijah, some snacks, our discharge report from the current program he's attending and got to my desired location 5 minutes early. Strangely enough, we were told to wait in the waiting room...and waited and waited. I began to get very nervous. if we were meeting just one person I could see the delay, but wasn't there a whole team of people waiting for us? Eventually, our Regional Center Coordinator came down. To inform me we were at the wrong place. Only I had no idea where to go!! I panicked. Began calling every phone number I had access to in relation to this appointment and only got voice mail. Our Regional Center Coordinator suggested I just go over to the last location I had an appointment with the school system at. I began driving and calling. And the tears started.
I was driving aimlessly around town, making calls, when I finally pulled over and double checked my email. There it was- clear as day, even though I had not seen it- a specific address and location directions for the meeting. I was bawling by now. I turned onto the street near the school we were due at, and a woman began to cross the street in front of my car. I couldn't believe my eyes- it was Elijah's old Physical therapist!!! I shouted Hi and she came over, all smiles to the car. So, I began bawling again. I was so overwhelmed and to see a friendly face, just put me over the edge. She calmed me down, assured me that it was FINE- they were running late anyway, and to take a deep breath.
The assessment itself went alright. Elijah mostly did what he does- so I felt like they got a pretty accurate sense of his abilities. Which is good. The part that was not as good for me, are the inaccurate statements that still circulate about what a child with Down syndrome can and can't do. I heard at least 3 times this exact sentence: "Well, since he has Down syndrome, he'll OBVIOUSLY be in a Special Education class." I said nothing. The reality for us is that I actually do think that RIGHT NOW, a special education class is what will be best for Elijah. His gross motor skills in particular are so far delayed that he really needs help. So, while I do think a special education class will best best for Elijah this year, it is NOT true to say that all children with Down syndrome should be in a special education class. There are many kids with Down syndrome that would do better in a typically developing preschool class. It's frustrating to hear over and over again- even before they meet my son- that the understanding about Down syndrome (even by those that would call themselves professionals) is so inaccurate. It's frustrating to feel like your child will be underestimated because of outdated concepts.
Although I had frustrations about the understanding and language, everyone was very nice and Elijah was his typical charming self. The kid knows how to win people over, that is for sure.
I couldn't have been happier to leave this week in the dust. School is out for Christian for the next two weeks, my work schedule is slightly lightened, as my ballet teaching job is on Spring Break for a week, and I'll have a little more time to fit in some quality activities with my kids. Yesterday, we attended the DSALA's (Down syndrome Association of Los Angeles) Egg Hunt. We packed up the kids, some snacks, and the camera and headed to the park to meet up with everyone. The Easter Bunny was there, and I couldn't wait to see Elijah's reaction...
The series of photos feels a bit like my week was:
Whoa!
I don't like you!
Alright...I'm cool!
Looking forward to a more Alright...I'm cool! week ahead...
I got the news a couple of weeks ago that my Minivan would rest in peace after "throwing a rod". Apparently this is akin to dying a quick death. Engine dead. Too costly to bother repairing. It's just as well. I had been driving around terrified of the impending doom for quite some time, and frankly it was wearing on me. I was on my way with the boys to meet a new friend from the Down syndrome community for a playdate at her house, when just as I was cresting a large grade on a freeway, my van just...turned off. I began praying loudly as there was no place to pull off the freeway. Please God just let us get to the exit. Please God, Please God... We did get to the next exit- thankfully unharmed- and sat there waiting for what to do next as my heart beat began to slow back down to a normal pace. We got my car towed off to a nearby parking spot (it was a weekend- after mechanic hours. Of course.) and went for our playdate anyway.
The process of buying a new car and disposing of my old one was long and drawn out and a lot of money was spent on a crappy rental car- that thankfully was cheap and crappy, so that when I closed my finger into the door of it, didn't break my finger. See? The silver lining. But finally...FINALLY, I have a new (to me) car, that is problem-free, fuel efficient, and kinda cute. I sadly said goodbye to my roomy minivan with my ability to fit just about anything into the back of it, in exchange for a car I can rely on. I happily took that trade off.
And the license plate? I'm embracing it. It's even pretty true.
This week was rough. We have been gearing up for Elijah's transition to preschool, and finally had our IEP assessment. This assessment brings together a team of people- a psychologist, a Physical Therapist, an Occupational Therapist, an Adaptive PE teacher, and a Speech Therapist- to assess what your child is doing and what the best placement & goals for them would be within the public school system. Our assessment was on Tuesday, and I calmly packed up Elijah, some snacks, our discharge report from the current program he's attending and got to my desired location 5 minutes early. Strangely enough, we were told to wait in the waiting room...and waited and waited. I began to get very nervous. if we were meeting just one person I could see the delay, but wasn't there a whole team of people waiting for us? Eventually, our Regional Center Coordinator came down. To inform me we were at the wrong place. Only I had no idea where to go!! I panicked. Began calling every phone number I had access to in relation to this appointment and only got voice mail. Our Regional Center Coordinator suggested I just go over to the last location I had an appointment with the school system at. I began driving and calling. And the tears started.
I was driving aimlessly around town, making calls, when I finally pulled over and double checked my email. There it was- clear as day, even though I had not seen it- a specific address and location directions for the meeting. I was bawling by now. I turned onto the street near the school we were due at, and a woman began to cross the street in front of my car. I couldn't believe my eyes- it was Elijah's old Physical therapist!!! I shouted Hi and she came over, all smiles to the car. So, I began bawling again. I was so overwhelmed and to see a friendly face, just put me over the edge. She calmed me down, assured me that it was FINE- they were running late anyway, and to take a deep breath.
The assessment itself went alright. Elijah mostly did what he does- so I felt like they got a pretty accurate sense of his abilities. Which is good. The part that was not as good for me, are the inaccurate statements that still circulate about what a child with Down syndrome can and can't do. I heard at least 3 times this exact sentence: "Well, since he has Down syndrome, he'll OBVIOUSLY be in a Special Education class." I said nothing. The reality for us is that I actually do think that RIGHT NOW, a special education class is what will be best for Elijah. His gross motor skills in particular are so far delayed that he really needs help. So, while I do think a special education class will best best for Elijah this year, it is NOT true to say that all children with Down syndrome should be in a special education class. There are many kids with Down syndrome that would do better in a typically developing preschool class. It's frustrating to hear over and over again- even before they meet my son- that the understanding about Down syndrome (even by those that would call themselves professionals) is so inaccurate. It's frustrating to feel like your child will be underestimated because of outdated concepts.
Although I had frustrations about the understanding and language, everyone was very nice and Elijah was his typical charming self. The kid knows how to win people over, that is for sure.
I couldn't have been happier to leave this week in the dust. School is out for Christian for the next two weeks, my work schedule is slightly lightened, as my ballet teaching job is on Spring Break for a week, and I'll have a little more time to fit in some quality activities with my kids. Yesterday, we attended the DSALA's (Down syndrome Association of Los Angeles) Egg Hunt. We packed up the kids, some snacks, and the camera and headed to the park to meet up with everyone. The Easter Bunny was there, and I couldn't wait to see Elijah's reaction...
The series of photos feels a bit like my week was:
Whoa!
I don't like you!
Alright...I'm cool!
Looking forward to a more Alright...I'm cool! week ahead...
Wednesday, March 13, 2013
Happy Birthday. Now, Get out.
Today, after school, as I was unloading the boys and the stuff from the trip home, Christian came over to my side of the car, holding a dandelion wish. He had no idea what it was, so I told him, "All you have to do, is close your eyes, make a wish and blow! Your wishes float up to God and they may come true." I demonstrated, by closing my eyes and wishing, Please, God, let Elijah end up in the preschool program that is right for him... and then I blew the "wishes" into the air. Christian got very excited and ran to grab another dandelion wish. He closed his eyes, paused and then blew the wishes into the air. I couldn't resist. "So, what did you wish for?"
He said, "A race car bed and to go to Magic School."
Those are awesome wishes. But, my wishes these days are usually not for me. I have dreams and I have silly wishes too, but I tend to spend my wishes on my kids these days. At least when it's SERIOUS...like when wishing on a dandelion weed.
Yesterday, I toured possible preschool programs for Elijah. Frankly, it's depressing. Elijah has been in an AMAZING center-based therapy program since September this year. He has blossomed. He has been interacting and socializing with other kids. There is a 1:1 ratio, a Physical therapy gym, an Occupational therapy gym and 10+ therapists who care deeply about the success of the children who attend this program. It's a dream come true. ....And then there is the Los Angeles Unified School District (LAUSD). As soon as Elijah turns 3...and I mean, literally ON HIS BIRTHDAY, he must leave his current program and be transitioned into LAUSD, where he'll receive (hopefully) the services he still needs support from.
Happy Birthday. Now, get out.
I spent the morning crying over the options we'll have. I couldn't quite put my finger on the reason for the tears at first. It's certainly partly that Elijah is growing up quickly and already about to begin preschool (I also cried when Christian began preschool. Then cried when he started his second (and last) year of preschool. Cried when he graduated. Then cried when he began Kindergarten. I'm seeing a trend here...) So, there's that. But, it's also because the options for Elijah are greatly reduced. On the tour yesterday, I looked at a class at a nearby neighborhood school, and frankly, there is no way that Elijah is ready for that. Those kids were fully self sufficient, and there weren't any obvious diagnoses. I'm thinking mild speech delays might have been the extent of it. Elijah WILL get there, eventually. He's just not there right now.
We went to one school who had been on my "Avoid-this-school-radar", and I had very low expectations. The class we looked at is called a Preschool Intense Class...which sounded kinda scary and limiting, but when we walked in, I saw a very upbeat, positive and loving teacher who was engaged and engaging with her students. My first thought was, Elijah would LOVE her!!! Unfortunately, I also saw the same kind of class with a teacher who seemed cynical, down beat and slightly negative. Her tasks were ridiculously ill-suited to her students, and as a result, the kids' diagnoses seemed more severe. They weren't engaged. In fact, quite a few of them seemed a little "checked out." And, frankly, I didn't blame them.
Over the next few weeks, we have scheduled assessments which all lead up to a final IEP (Individualized Education Plan). As of April 20th- Elijah's 3rd Birthday- he will be booted from the current placement he is in, and begin a school placement that is purely about "Accessing the Curriculum" and not necessarily what is best for Elijah. Like I said,
Happy Birthday. Now, get out.
So, I'm using all of my Dandelion wishes on my kids right now, and because he needs it, especially on Elijah. My own wishes for "me" will be saved for after that 3rd Birthday. Although I did get a little "me" wish come true this week- no dandelion weed necessary. A client sent a little Thank You gift for a job well done. Just a little Michael Kors handbag to say, We appreciate you. It left me thinking,
"Get out??!!! Happy... Birthday!!"
He said, "A race car bed and to go to Magic School."
Those are awesome wishes. But, my wishes these days are usually not for me. I have dreams and I have silly wishes too, but I tend to spend my wishes on my kids these days. At least when it's SERIOUS...like when wishing on a dandelion weed.
Yesterday, I toured possible preschool programs for Elijah. Frankly, it's depressing. Elijah has been in an AMAZING center-based therapy program since September this year. He has blossomed. He has been interacting and socializing with other kids. There is a 1:1 ratio, a Physical therapy gym, an Occupational therapy gym and 10+ therapists who care deeply about the success of the children who attend this program. It's a dream come true. ....And then there is the Los Angeles Unified School District (LAUSD). As soon as Elijah turns 3...and I mean, literally ON HIS BIRTHDAY, he must leave his current program and be transitioned into LAUSD, where he'll receive (hopefully) the services he still needs support from.
Happy Birthday. Now, get out.
I spent the morning crying over the options we'll have. I couldn't quite put my finger on the reason for the tears at first. It's certainly partly that Elijah is growing up quickly and already about to begin preschool (I also cried when Christian began preschool. Then cried when he started his second (and last) year of preschool. Cried when he graduated. Then cried when he began Kindergarten. I'm seeing a trend here...) So, there's that. But, it's also because the options for Elijah are greatly reduced. On the tour yesterday, I looked at a class at a nearby neighborhood school, and frankly, there is no way that Elijah is ready for that. Those kids were fully self sufficient, and there weren't any obvious diagnoses. I'm thinking mild speech delays might have been the extent of it. Elijah WILL get there, eventually. He's just not there right now.
We went to one school who had been on my "Avoid-this-school-radar", and I had very low expectations. The class we looked at is called a Preschool Intense Class...which sounded kinda scary and limiting, but when we walked in, I saw a very upbeat, positive and loving teacher who was engaged and engaging with her students. My first thought was, Elijah would LOVE her!!! Unfortunately, I also saw the same kind of class with a teacher who seemed cynical, down beat and slightly negative. Her tasks were ridiculously ill-suited to her students, and as a result, the kids' diagnoses seemed more severe. They weren't engaged. In fact, quite a few of them seemed a little "checked out." And, frankly, I didn't blame them.
Over the next few weeks, we have scheduled assessments which all lead up to a final IEP (Individualized Education Plan). As of April 20th- Elijah's 3rd Birthday- he will be booted from the current placement he is in, and begin a school placement that is purely about "Accessing the Curriculum" and not necessarily what is best for Elijah. Like I said,
Happy Birthday. Now, get out.
So, I'm using all of my Dandelion wishes on my kids right now, and because he needs it, especially on Elijah. My own wishes for "me" will be saved for after that 3rd Birthday. Although I did get a little "me" wish come true this week- no dandelion weed necessary. A client sent a little Thank You gift for a job well done. Just a little Michael Kors handbag to say, We appreciate you. It left me thinking,
"Get out??!!! Happy... Birthday!!"
Friday, February 22, 2013
I Need An Acronym Like I Need A Hole In The Head
My little one is getting close to three years old. I barely know how it happened, but he is getting ready to transition to preschool. In the world of diagnoses, turning three isn't just about "preschool". It's about Services. When Elijah was born, we contacted what is called (in California) The Regional Center. The Regional Center (We'll call it the RC from here on out) helps to provide children and family who have specific diagnoses, with the services they need- things like Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy (ST) and even Child Development Services (CDS) which is kind of like "Play therapy:" Phew! Did you follow that? Well, this became my life- understanding it, becoming an advocate for it, fighting for it, being willing to become "the high maintenance Mom" for it. Whatev. The squeaky wheel gets the grease and all that.
I am someone who has always had an opinion. If something needs to be "talked about", I do it. It's not always comfortable, but I've been willing to do it. However, when it comes to the paperwork and the red tape and fighting authorities on what one might need? ...Not my strength. I avoid paperwork and red tape like the plague. Until I had Elijah. My Mama Bear instinct kicked in and I was warned: You might have to fight for what you want. That worried me. (Again: Not my strength.) We ended up with an RC Coordinator who, while very good at his job overall, does. not. return. phone. calls. promptly. I should say now, that in the big picture of things, I'm glad we got who we got. I learned to be the squeaky wheel. I even learned how to make phone calls and to leave voicemail messages that go something like this: "Hi _______________! This is Jennifer Currier, Elijah Currier's Mom, I left you a message on Monday and Thursday of last week and haven't heard back from you. I really need to hear back from you this week as SOON as possible. I am going to begin my call and email campaign, EVERY. DAY., MULTIPLE. TIMES. A. DAY until I hear back from you. SO, perhaps you can call me back sooner than later. Thaa-anks! :) Love you... mean it... bye! (Ok, I didn't really say Love you, Mean it. But you get the gist.)
In the course of "fighting", I have learned a lot about the system that is in place to help children with special needs and their families. Let me just say...there is a LOT of "lingo" that goes with it. But, nothing prepared me for the impending round of assessments to get Elijah ready for preschool.
I met with our RC coordinator and a representative from the Los Angeles Unified School District (LAUSD) to have what is called a "Transition Meeting" to begin to prepare the paperwork for Elijah to be transitioned out of the RC and into LAUSD- into a preschool program, where he'll only receive services that help him to "navigate the classroom". So, over the next 4 weeks Elijah has APPOINTMENTS: He has an Audio/ Hearing And Health Screening next week, he has a discharge meeting with the program he is currently attending, I am taking a tour of two of the available LAUSD programs that he might be able to attend, and then Elijah has a 2 hour assessment by a team of psychologists, physical and adaptive therapists, a speech therapist, and an occupational therapist to assess what he be capable of and what he'll need to begin preschool. Cleansing breath.
I attended the transition meeting without Elijah- giving my perspective of where he's at and what he's doing. They had the paperwork wrong. The LAUSD representative passed me a printed sheet to approve. I read: Elijah sat up at 15 months, crawled at 12 months and walked at 12 months. I was like, "Whoa Nelly!" Elijah isn't walking at 2.9 months, much less at 12 months!!!! The service coordinator and LAUSD representative suddenly looked at me, alarmed. Why not?? Umm.."Well", I said, "He seems to have particularly low muscle tone in his core...maybe even lower than typical for other kids with Down syndrome....but he is getting there. He is cruising and walking with some support, but he just isn't there yet." The two coordinators breathed a big sigh of relief. I continued to read: Child is diagnosed with Down's Syndrome. I stopped, looked up at the LAUSD representative, took a breath and said, "Did you know that it is not called Down'S Syndrome?? There is actually no apostrophe "s". It is called Down. syndrome." She said, "REALLY??! I had no idea. I thought it was based after the doctor who discovered it." I told her that yes, it is just Down. I also didn't realize the difference, but when we received Elijah's diagnosis, that I researched it all and learned that it is Down syndrome, not Down's. We continued.
I escaped the transition meeting unscathed. It was fairly harmless- just a meeting to discuss briefly where Elijah is developmentally. I was told we would be contacted for appointments and assigned an LAUSD representative. I spoke with our Representative on the phone this week. She seems knowledgeable and prompt. She emailed me a confirmation of Elijah's assessment meeting. I wrote her back asking if we could tour some of the available programs, and asked about one in particular that I had heard good things about. She wrote me back and said, "Oh...well, if it is the KIT program, that is designed for our AUT children. The PSM is the same as the other program you'll see and the PCC is what we'll discuss but is not typically recommended for our incoming 3 year olds." I was like BTFU (Back the fuck up)...WTH (What the hell) are you talking about??? LOL. (Instead, I wrote, I have NO IDEA what you just said. Please repeat: In English.)
I'm getting the vibe that it's a whole new world. Yeah...it kinda sucks. I was just getting used to the old world and had finally figured that one out. Now I'm all.... WTH. LOL. I need a BFF who can BYOB.
I know I made no sense there, but frankly those are the only acronyms I know. I need to figure out how to help my son get what he needs. I don't need another acronym. I need another acronym like I need a hole in the head.
Which is...well, not at all.
P.S. When I spell-checked this blog, all of the acronyms were highlighted in bright yellow as being Wrong.
That was my point.
I am someone who has always had an opinion. If something needs to be "talked about", I do it. It's not always comfortable, but I've been willing to do it. However, when it comes to the paperwork and the red tape and fighting authorities on what one might need? ...Not my strength. I avoid paperwork and red tape like the plague. Until I had Elijah. My Mama Bear instinct kicked in and I was warned: You might have to fight for what you want. That worried me. (Again: Not my strength.) We ended up with an RC Coordinator who, while very good at his job overall, does. not. return. phone. calls. promptly. I should say now, that in the big picture of things, I'm glad we got who we got. I learned to be the squeaky wheel. I even learned how to make phone calls and to leave voicemail messages that go something like this: "Hi _______________! This is Jennifer Currier, Elijah Currier's Mom, I left you a message on Monday and Thursday of last week and haven't heard back from you. I really need to hear back from you this week as SOON as possible. I am going to begin my call and email campaign, EVERY. DAY., MULTIPLE. TIMES. A. DAY until I hear back from you. SO, perhaps you can call me back sooner than later. Thaa-anks! :) Love you... mean it... bye! (Ok, I didn't really say Love you, Mean it. But you get the gist.)
In the course of "fighting", I have learned a lot about the system that is in place to help children with special needs and their families. Let me just say...there is a LOT of "lingo" that goes with it. But, nothing prepared me for the impending round of assessments to get Elijah ready for preschool.
I met with our RC coordinator and a representative from the Los Angeles Unified School District (LAUSD) to have what is called a "Transition Meeting" to begin to prepare the paperwork for Elijah to be transitioned out of the RC and into LAUSD- into a preschool program, where he'll only receive services that help him to "navigate the classroom". So, over the next 4 weeks Elijah has APPOINTMENTS: He has an Audio/ Hearing And Health Screening next week, he has a discharge meeting with the program he is currently attending, I am taking a tour of two of the available LAUSD programs that he might be able to attend, and then Elijah has a 2 hour assessment by a team of psychologists, physical and adaptive therapists, a speech therapist, and an occupational therapist to assess what he be capable of and what he'll need to begin preschool. Cleansing breath.
I attended the transition meeting without Elijah- giving my perspective of where he's at and what he's doing. They had the paperwork wrong. The LAUSD representative passed me a printed sheet to approve. I read: Elijah sat up at 15 months, crawled at 12 months and walked at 12 months. I was like, "Whoa Nelly!" Elijah isn't walking at 2.9 months, much less at 12 months!!!! The service coordinator and LAUSD representative suddenly looked at me, alarmed. Why not?? Umm.."Well", I said, "He seems to have particularly low muscle tone in his core...maybe even lower than typical for other kids with Down syndrome....but he is getting there. He is cruising and walking with some support, but he just isn't there yet." The two coordinators breathed a big sigh of relief. I continued to read: Child is diagnosed with Down's Syndrome. I stopped, looked up at the LAUSD representative, took a breath and said, "Did you know that it is not called Down'S Syndrome?? There is actually no apostrophe "s". It is called Down. syndrome." She said, "REALLY??! I had no idea. I thought it was based after the doctor who discovered it." I told her that yes, it is just Down. I also didn't realize the difference, but when we received Elijah's diagnosis, that I researched it all and learned that it is Down syndrome, not Down's. We continued.
I escaped the transition meeting unscathed. It was fairly harmless- just a meeting to discuss briefly where Elijah is developmentally. I was told we would be contacted for appointments and assigned an LAUSD representative. I spoke with our Representative on the phone this week. She seems knowledgeable and prompt. She emailed me a confirmation of Elijah's assessment meeting. I wrote her back asking if we could tour some of the available programs, and asked about one in particular that I had heard good things about. She wrote me back and said, "Oh...well, if it is the KIT program, that is designed for our AUT children. The PSM is the same as the other program you'll see and the PCC is what we'll discuss but is not typically recommended for our incoming 3 year olds." I was like BTFU (Back the fuck up)...WTH (What the hell) are you talking about??? LOL. (Instead, I wrote, I have NO IDEA what you just said. Please repeat: In English.)
I'm getting the vibe that it's a whole new world. Yeah...it kinda sucks. I was just getting used to the old world and had finally figured that one out. Now I'm all.... WTH. LOL. I need a BFF who can BYOB.
I know I made no sense there, but frankly those are the only acronyms I know. I need to figure out how to help my son get what he needs. I don't need another acronym. I need another acronym like I need a hole in the head.
Which is...well, not at all.
P.S. When I spell-checked this blog, all of the acronyms were highlighted in bright yellow as being Wrong.
That was my point.
Wednesday, February 20, 2013
When life gives you dead animals...put on the gas mask
There's that saying, "When life gives you lemons, make lemonade!" But, it's not ever as if life does give you lemons. What's wrong with lemons? How did a lemon get a bad rap? Why is it that the poor citrus of lemon goodness got the reputation of being the bad one? Your car is bad, must be a lemon. Doesn't make sense to me. Perhaps because I am in the extreme camp of lemon loving. And after this week, I say that if "Lemon" is really the best negative these people can come up with, then these "sayings" were really written by people who have no business writing "sayings".
Jus saying.
How about, "When life hands you a dead animal, decaying and rotting under your house for a week, then...put on your friggin' gas mask and get that sucker out."?? I think it has a great ring to it. But, maybe that's just because that was my week. And this was my husband:
What? You don't own a gas mask?? That is because you do not have the extreme pleasure of being married to my husband: eccentric, historian, lover of all things...things, brainiac, weirdo. (Just kidding, honey. I love you and am extremely grateful that I did not have to be the one to crawl under our house to remove the perpetrator. But if I had, I totally would have stolen your gas mask to do it with...I mean, what else is it good for?? ) (Who am I kidding? I would have made chili and burned candles until the smell was gone 3 months later. There would have been no gas mask. No dead animal retrieval at all...)
So... all of that was by 8am. 8. a. m. I should have taken the hours between waking and 8am as a sign.
On the way to take Elijah to program today, I stopped at a stoplight as large wafts of radiator-smelling smoke began enveloping my car. Temperature gauge remained in the steady, so...??? I was already warned that my radiator had a small hole and would need replacing as soon as I had the freedom to leave the car for a whole day. I still owed my mechanic a balance, so I thought now was as good a time as any to get caught up on payment. I drove in under my puff of smoke. These guys love me, but they'd rather never see me, and I feel the same. This place has become a virtual second home. I help myself to coffee. I use their stinky bathroom. We talk about our kids, exchanging stories of whose kid did what and we remind ourselves that we're just not alone in this endeavor called parenting. It's not entirely unpleasant.
Two hours later, I had the car temporarily fixed (still need to take it in for that full day radiator replacement) and I was on my way.
I forgot to mention: All of this happened while my Mother in Law was in town. My Mother in Law, who we see about once a year. Welcome to our stinky house and our broken cars! Make yourself comfortable! Luckily, I am incredibly blessed by a Mother in Law who easily rolls with the punches and manages a nearly straight face as her son dons a jump suit, gas mask and long rubber gloves to retrieve a dead animal from under the house. Love you, Bev!
(We did manage at least one touristy, fun outing to the La Brea Tar Pits...)
We sent Charles' Mom off with love and delved straight back into our busy, daily lives. We have been needing to create a living trust for some time now, and the time had finally come to get the wheels turning in this regard. We made an appointment with a referred lawyer and showed up for our appointment last week. The lawyer came out to the waiting room to greet us, asked a couple of questions and when she noticed that we needed a Special Needs clause she asked what the diagnosis was. I told her our youngest son has Down syndrome. She flipped her hair and said, as she was leading us into her office, "Well, they say that's the Cadillac of all Special Needs!!"
I snort laughed. Or maybe I was having a slight smell memory of the dead Possum we (read: my husband) found under our house. What I should have said (I always, ALWAYS think of the best things to say only after the jaw dropping occasion) was, You shouldn't say that. You shouldn't EVER say that again. Just...trust me. It only works if you might be saying this to an expectant Mother who is feeling devastated by a diagnosis of Down syndrome. Then, and maybe only then, might it be taken in a positive light. I'll just say this: Once a person has a child...with ANY kind of special need, they are IN IT. They have a balanced life just like anyone, with maybe a few extra low lows, but also maybe a few extra high highs. They don't need to be made to "feel better". One could argue that the person is just well meaning and trying to be kind, but I would counter with, What do they have to be "well meaning" and kind about? That is where most parents who have a child with special needs, feel their spines prickle. How about treating them like any other child? How about treating a diagnosis as any other trait, like blond hair? We can revisit and rewrite our lawyer's question and response: What is his diagnosis? He has Down syndrome. (insert new answer) Oh, okay.
It's just so much simpler than most people make it.
No gas mask necessary. :)
Jus saying.
How about, "When life hands you a dead animal, decaying and rotting under your house for a week, then...put on your friggin' gas mask and get that sucker out."?? I think it has a great ring to it. But, maybe that's just because that was my week. And this was my husband:
What? You don't own a gas mask?? That is because you do not have the extreme pleasure of being married to my husband: eccentric, historian, lover of all things...things, brainiac, weirdo. (Just kidding, honey. I love you and am extremely grateful that I did not have to be the one to crawl under our house to remove the perpetrator. But if I had, I totally would have stolen your gas mask to do it with...I mean, what else is it good for?? ) (Who am I kidding? I would have made chili and burned candles until the smell was gone 3 months later. There would have been no gas mask. No dead animal retrieval at all...)
So... all of that was by 8am. 8. a. m. I should have taken the hours between waking and 8am as a sign.
On the way to take Elijah to program today, I stopped at a stoplight as large wafts of radiator-smelling smoke began enveloping my car. Temperature gauge remained in the steady, so...??? I was already warned that my radiator had a small hole and would need replacing as soon as I had the freedom to leave the car for a whole day. I still owed my mechanic a balance, so I thought now was as good a time as any to get caught up on payment. I drove in under my puff of smoke. These guys love me, but they'd rather never see me, and I feel the same. This place has become a virtual second home. I help myself to coffee. I use their stinky bathroom. We talk about our kids, exchanging stories of whose kid did what and we remind ourselves that we're just not alone in this endeavor called parenting. It's not entirely unpleasant.
Two hours later, I had the car temporarily fixed (still need to take it in for that full day radiator replacement) and I was on my way.
I forgot to mention: All of this happened while my Mother in Law was in town. My Mother in Law, who we see about once a year. Welcome to our stinky house and our broken cars! Make yourself comfortable! Luckily, I am incredibly blessed by a Mother in Law who easily rolls with the punches and manages a nearly straight face as her son dons a jump suit, gas mask and long rubber gloves to retrieve a dead animal from under the house. Love you, Bev!
(We did manage at least one touristy, fun outing to the La Brea Tar Pits...)
We sent Charles' Mom off with love and delved straight back into our busy, daily lives. We have been needing to create a living trust for some time now, and the time had finally come to get the wheels turning in this regard. We made an appointment with a referred lawyer and showed up for our appointment last week. The lawyer came out to the waiting room to greet us, asked a couple of questions and when she noticed that we needed a Special Needs clause she asked what the diagnosis was. I told her our youngest son has Down syndrome. She flipped her hair and said, as she was leading us into her office, "Well, they say that's the Cadillac of all Special Needs!!"
I snort laughed. Or maybe I was having a slight smell memory of the dead Possum we (read: my husband) found under our house. What I should have said (I always, ALWAYS think of the best things to say only after the jaw dropping occasion) was, You shouldn't say that. You shouldn't EVER say that again. Just...trust me. It only works if you might be saying this to an expectant Mother who is feeling devastated by a diagnosis of Down syndrome. Then, and maybe only then, might it be taken in a positive light. I'll just say this: Once a person has a child...with ANY kind of special need, they are IN IT. They have a balanced life just like anyone, with maybe a few extra low lows, but also maybe a few extra high highs. They don't need to be made to "feel better". One could argue that the person is just well meaning and trying to be kind, but I would counter with, What do they have to be "well meaning" and kind about? That is where most parents who have a child with special needs, feel their spines prickle. How about treating them like any other child? How about treating a diagnosis as any other trait, like blond hair? We can revisit and rewrite our lawyer's question and response: What is his diagnosis? He has Down syndrome. (insert new answer) Oh, okay.
It's just so much simpler than most people make it.
No gas mask necessary. :)
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