I feel a whole lot less invincible today.
My day went something like this: answer work emails for an hour, then place a phone call with the state about the Autism waiver waitlist (they are sending me paperwork to complete). Send a job to a client for review, then place another call to a private service offering social skills therapy (they are also sending me paperwork). Conference call with a client, then head to Simon's school to check out the Kindergarten Special Education Classroom. Visit in Simon's current classroom to see how he is doing and chat with the teacher. Meeting with the IEP coordinator at Simon's school to discuss options and diagnoses. Bring Simon home with me. Scarf half sandwich (had not eaten yet). Change clothes to more professional attire (no time for shower, thank goodness for ponytails) for class. Swill coffee. Eat a couple donut holes. Teach for four hours. Crash.
I'm on the crashing side of things right now. I didn't get nearly enough work done, but I'm too tired to be able to complete any meaningful task (therefore I apologize if this post is awful and whiny). I feel like my class was taught with less enthusiasm than I usually bring to it, but I'm feeling emotionally depleted after an anxious day of trying to plan for Kindergarten for Simon (and being unsure about the appropriateness of what is currently offered). Honestly, there is so much anxiety around the topic of kindergarten and new therapies for Simon I feel like my head might explode on a good day -- and today wasn't exactly a good day.
But all is not lost. Simon's current teacher and the IEP coordinator are great, and they are going to help me look for options. The representative from the private therapy seemed to think their services could help us without having us get a second mortgage on the house. My class did well today, even if I don't think I did, and and I'm grateful to have more business coming across my desk any day.
And, tomorrow is another day. I've set out my clothes and bag for yoga. I've got an early morning meeting planned, after which I will make a combo trip to the pharmacy and grocery stores (for quick to defrost meal options!), come home and pound out some work until late night when I can no longer see straight. I can do this, I know it. I can find my way back to invincible, I just need to find my cape first (and maybe take a shower).
Tuesday, March 29, 2011
Saturday, March 26, 2011
Trying
We just returned home from four and a half hours of speech-language evaluations at Kennedy Krieger. We were referred for testing last month by our Neuropsychiatrist, at which point we were put on a waiting list for evaluation. A six month waiting list. Somehow, I managed to throw just the right sort of fit -- both polite and understanding, but sufficiently firm and urgent -- to get our eval moved ahead five months, and off of the wait list (being completely flexible about our time, helped too).
Today, Simon was given the Preschool Language Assessment (PLAI) and the Autism Diagnostic Observation Schedule (ADOS). I also had the distinct impression that Brian and I were being evaluated (I was right), our every interaction with Simon -- from basic care, to mitigating meltdowns -- was noted.
To say that it was a loooong afternoon, which tried the patience of all participating, would hardly be sufficient. Frequent breaks, bribery and tears punctuated short stretches of successful testing. The highlight of the afternoon was a vending machine run.
The results aren't a surprise, Simon is still "three standard deviations" below average for speech/language and communication skills. His performance is ranked in the 2.5 - 2.8 yrs. range. He tested positive (again) for Autism, as well; PDD-NOS. His communication and social skills are considered seriously impaired; therefore, we are being referred to more services -- for which, of course, there is a significant waiting list.
I'm tired of being put on waiting lists to get help for Simon. This litany of hurry-up and wait is a maddening protocol. It is beyond frustrating (I think I've arrived at just plain pissed) to identify a problem, request help from your overseeing physician, then be referred to a specialist whom you have to wait months to see, to get confirmation of the problem and then get referred for an evaluation that takes months to occur, to then acquire a positive diagnosis and then -- finally -- be referred to therapeutic services that you have to be put on a waiting list to obtain! Years can go (have gone) by just WAITING for help, well after the time you know you need it. And, of course, all during the critical "early intervention" years. Alas, as far as I can tell, there are currently no alternatives to this dysfunctional "system." Dishearteningly, I imagine this is because of the amount of children needing help, and the lack of adequate resources. In the meantime, I have requested to be given very detailed, explicit recommendations on what we can do to implement therapeutic communication strategies both at home and at school, and the lovely specialist we saw today agreed.
On the upside, Brian and I tested well. Amidst my mini-meltdown (expressing my frustration with waiting lists, see above), the therapist stopped me (fortunately before I got to the tears part). She said that Simon has been getting lots of help, and that it was clear that the reason he is doing as well as he is is because of the intervention he has received thus far. She also said (and I think I will take this compliment and carry it around with me as one of the best I've gotten) that Brian and I were some of the best parents she has seen when it came to working with Simon to improve his communication skills on a day-to-day-minute-to-minute basis. She cited examples of our giving him appropriate language cues, waiting for his processing, and finding unique was to motivate him -- things we don't even realize we are doing. As a parent, you just do it.
I'm trying to let this -- the understanding that maybe, just maybe -- we are doing well by our son, whose needs are sometimes so intense, and whose care I sometimes feel inadequate to perform, over-ride my frustration and even anger at what feels like an insurmountable delay at addressing such serious diagnosis. I'm trying to let it give me hope that we've done well, and will continue to do better. To believe that Simon will get everything he needs to become a successful, functional adult, and that I have done all that can be done to facilitate it.
I'm trying.
Today, Simon was given the Preschool Language Assessment (PLAI) and the Autism Diagnostic Observation Schedule (ADOS). I also had the distinct impression that Brian and I were being evaluated (I was right), our every interaction with Simon -- from basic care, to mitigating meltdowns -- was noted.
To say that it was a loooong afternoon, which tried the patience of all participating, would hardly be sufficient. Frequent breaks, bribery and tears punctuated short stretches of successful testing. The highlight of the afternoon was a vending machine run.
The results aren't a surprise, Simon is still "three standard deviations" below average for speech/language and communication skills. His performance is ranked in the 2.5 - 2.8 yrs. range. He tested positive (again) for Autism, as well; PDD-NOS. His communication and social skills are considered seriously impaired; therefore, we are being referred to more services -- for which, of course, there is a significant waiting list.
I'm tired of being put on waiting lists to get help for Simon. This litany of hurry-up and wait is a maddening protocol. It is beyond frustrating (I think I've arrived at just plain pissed) to identify a problem, request help from your overseeing physician, then be referred to a specialist whom you have to wait months to see, to get confirmation of the problem and then get referred for an evaluation that takes months to occur, to then acquire a positive diagnosis and then -- finally -- be referred to therapeutic services that you have to be put on a waiting list to obtain! Years can go (have gone) by just WAITING for help, well after the time you know you need it. And, of course, all during the critical "early intervention" years. Alas, as far as I can tell, there are currently no alternatives to this dysfunctional "system." Dishearteningly, I imagine this is because of the amount of children needing help, and the lack of adequate resources. In the meantime, I have requested to be given very detailed, explicit recommendations on what we can do to implement therapeutic communication strategies both at home and at school, and the lovely specialist we saw today agreed.
On the upside, Brian and I tested well. Amidst my mini-meltdown (expressing my frustration with waiting lists, see above), the therapist stopped me (fortunately before I got to the tears part). She said that Simon has been getting lots of help, and that it was clear that the reason he is doing as well as he is is because of the intervention he has received thus far. She also said (and I think I will take this compliment and carry it around with me as one of the best I've gotten) that Brian and I were some of the best parents she has seen when it came to working with Simon to improve his communication skills on a day-to-day-minute-to-minute basis. She cited examples of our giving him appropriate language cues, waiting for his processing, and finding unique was to motivate him -- things we don't even realize we are doing. As a parent, you just do it.
I'm trying to let this -- the understanding that maybe, just maybe -- we are doing well by our son, whose needs are sometimes so intense, and whose care I sometimes feel inadequate to perform, over-ride my frustration and even anger at what feels like an insurmountable delay at addressing such serious diagnosis. I'm trying to let it give me hope that we've done well, and will continue to do better. To believe that Simon will get everything he needs to become a successful, functional adult, and that I have done all that can be done to facilitate it.
I'm trying.
Thursday, March 24, 2011
Dreams
I've had a lot of babies happening around me lately (congrats all you new mom and mom-to-be buddies!), so it isn't too surprising that last night I had a very vivid dream about having another baby. In the dream, childbirth went exceptionally well and all was calm and happy -- sort of the opposite of when Simon was born. And I was thrilled -- until the dream nurse put the baby in my arms. I looked down and saw Simon (his newborn self).
"Wait!" I said, "I already had this baby -- and he is a little boy now."
"I know," said the nurse "but this baby is perfect -- no brain damage. You get to do it over!"
At that point, the dream turned into a nightmare. "No," I cried, "I want my son back -- my Simon. I love him just the way he is, and he is perfect. Don't take him away from me."
I think, for the first time ever, I was happy when Simon woke me up at 5 am to climb into bed with me. The dream faded and I held him close. As he snuggled into me, I knew that I really wouldn't change a thing. Though I both pray for and work towards miracles every single day -- to me, he is perfect, and I will always love him just as he is.
"Wait!" I said, "I already had this baby -- and he is a little boy now."
"I know," said the nurse "but this baby is perfect -- no brain damage. You get to do it over!"
At that point, the dream turned into a nightmare. "No," I cried, "I want my son back -- my Simon. I love him just the way he is, and he is perfect. Don't take him away from me."
I think, for the first time ever, I was happy when Simon woke me up at 5 am to climb into bed with me. The dream faded and I held him close. As he snuggled into me, I knew that I really wouldn't change a thing. Though I both pray for and work towards miracles every single day -- to me, he is perfect, and I will always love him just as he is.
Wednesday, March 23, 2011
Shopping! iSimon's latest fave iPad apps & discount sensory products!
Through a blog reader (thanks Amy Filardo!) I was introduced today to the pretty darn cool website "Discount School Supplies." Being a family that goes through a ludicrous amount of paper and pencils, and buys glue sticks in bulk; I love the idea of getting school supplies at a discount. However, when I went to the site I discovered that they carry a whole lot more than glue sticks. They have everything from math books to teeter-totters, cool puzzles and toys, and (drum roll), special needs equipment! And it IS cheaper!
For this week, use the coupon code 15PCENT and get 15% off your order (even clearance). If you order over $79 worth of merch (easy to do, even on discount sensory products) you get free shipping! Yay!
Click here -> Discount School Supplies
After you go crazy online shopping, check out some of these apps -- Simon has added to his list of favorites and requested that I let you guys know.
1. Busy Bee Preschool Zoo Train: This app gives you five really cute games for just a few dollars. There are puzzles, letter scrambles, a train whistle music player, a make-your-own train feature, and Simon's favorite -- the track puzzle. You match up the bits of track and when you are finished, the train is able to go around.. and around... and around...
2. Go George Go!: Help Curious George get dressed (match hat, shirt, shoes) and then help him navigate through a maze, where he collects fruit. The maze matches whatever outfit you put him in (ex. Space suit - George goes through space in a little rocket), and the fruit varies according to your level. Simon is at the banana level. At the end, you count your fruit and can play again! This game is fairly straightforward and easy to navigate, but it has been great for Simon's problem solving skills. He's learned to match up outfits to get the maze he wants, and he has learned how to make choices going through the maze to get the most fruit.
3. Madera & Figaro Save the Day by Lyn and Line: A really cute story with sweet illustrations and a high level of direction-following-needed interactivity. The characters invite you to help "Save the Day" in various ways, giving directions throughout. Simon most enjoys catching the fireflies, and baking the cake.
4. Thomas & Friends Game Pack: (Can you tell Simon likes trains?) More matching, puzzles, and mazes. Honestly, the Zoo train is a better app, but if you have a real Thomas fan this may be more motivating.
5. Faces iMake: Choose a face shape and then utilize the extensive menu of photo objects (everything from food to school supplies) to make faces. Very creative and accessible. You can also watch really cool videos of artists making faces out of every day objects for inspiration. The music is catchy, too...
6. Disney Puzzle Books: Cute, simple stories using familiar characters. Throughout the story, the text is broken up with activities (like simple puzzles, and seek and find). At the end, there is a matching game. We have "Mickey's Spooky Night" and Pooh's "What's a Bear to Do?"
7. Olivia would like me to add her favorite apps (though she does play with some of the ones above...) Brainpop is a great app based on the website of the same name. The app features animated educational videos covering everything from Civil Right's heroes to the Solar System, with quizzes at the end. She also enjoys Math Ninja and eyeMath, which are WAY more fun than Mom drilling her with flash cards.
8. Brian wants me to plug "angry birds" and "Gravity."
9. What are MY favorite apps? HA! Like I get a turn...
For this week, use the coupon code 15PCENT and get 15% off your order (even clearance). If you order over $79 worth of merch (easy to do, even on discount sensory products) you get free shipping! Yay!
Click here -> Discount School Supplies
After you go crazy online shopping, check out some of these apps -- Simon has added to his list of favorites and requested that I let you guys know.
1. Busy Bee Preschool Zoo Train: This app gives you five really cute games for just a few dollars. There are puzzles, letter scrambles, a train whistle music player, a make-your-own train feature, and Simon's favorite -- the track puzzle. You match up the bits of track and when you are finished, the train is able to go around.. and around... and around...
2. Go George Go!: Help Curious George get dressed (match hat, shirt, shoes) and then help him navigate through a maze, where he collects fruit. The maze matches whatever outfit you put him in (ex. Space suit - George goes through space in a little rocket), and the fruit varies according to your level. Simon is at the banana level. At the end, you count your fruit and can play again! This game is fairly straightforward and easy to navigate, but it has been great for Simon's problem solving skills. He's learned to match up outfits to get the maze he wants, and he has learned how to make choices going through the maze to get the most fruit.
3. Madera & Figaro Save the Day by Lyn and Line: A really cute story with sweet illustrations and a high level of direction-following-needed interactivity. The characters invite you to help "Save the Day" in various ways, giving directions throughout. Simon most enjoys catching the fireflies, and baking the cake.
4. Thomas & Friends Game Pack: (Can you tell Simon likes trains?) More matching, puzzles, and mazes. Honestly, the Zoo train is a better app, but if you have a real Thomas fan this may be more motivating.
5. Faces iMake: Choose a face shape and then utilize the extensive menu of photo objects (everything from food to school supplies) to make faces. Very creative and accessible. You can also watch really cool videos of artists making faces out of every day objects for inspiration. The music is catchy, too...
6. Disney Puzzle Books: Cute, simple stories using familiar characters. Throughout the story, the text is broken up with activities (like simple puzzles, and seek and find). At the end, there is a matching game. We have "Mickey's Spooky Night" and Pooh's "What's a Bear to Do?"
7. Olivia would like me to add her favorite apps (though she does play with some of the ones above...) Brainpop is a great app based on the website of the same name. The app features animated educational videos covering everything from Civil Right's heroes to the Solar System, with quizzes at the end. She also enjoys Math Ninja and eyeMath, which are WAY more fun than Mom drilling her with flash cards.
8. Brian wants me to plug "angry birds" and "Gravity."
9. What are MY favorite apps? HA! Like I get a turn...
Monday, March 21, 2011
Secrets of a Super Mom
Today I felt invincible. I had a ton to do, and accomplished it all -- with style, finesse, and that certain "I don't know how she does it," possessed by super women everywhere.
It started in yoga this morning. I nailed a headstand (been working on it for months), and some tricky twists. I even got kudos on my flying crow arm balance from the instructor.
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| http://blogs.yogajournal.com/blognew/mt-tb.cgi/1221 |
Following yoga, I got myself and the kids ready for the day in record time, with minimal fuss. At the bus stop, my fellow super-mom even complemented my put-together appearance.
When the babysitter showed up sick, I made her tea and sent her home. Undaunted, I called in the reinforcements (To the iPhone -- "Hi Mom!"), so I could go out as my alter-ego to save the world, one well designed project for non-profit services at a time.
I came home, did laundry, answered some emails, and then headed out again to take Simon to therapy at KKI. I was able to give a glowing report to the therapist about Simon's "homework" progress, and watched as she used a robotic virtual-reality simulation machine type thingy (yes, I believe that is it's technical term) to get Simon to practice weight bearing exercises on his left arm. Total super hero stuff, and he was awesome.
We came home, helped Olivia study vocabulary, played outside on the swings, and made a fantastic Chicken Parmesan for dinner. After dinner, kids bathed and put to bed, work finished, and blog post written!
However, like any good super hero, I have my dark secrets. I'll share them with you here (and hope you will share yours with me).
Om Secret: Yoga. It is the one thing I do only for myself, and it makes me look and feel better. The endorphin rush lasts all day, and pushing myself physically with tangible results is satisfying in the midst of uncertainty and stress. The fact that the studio I go to has early morning classes with good instructors is a bonus, too. ('cause if I don't go in the morning, something will ALWAYS get in the way later in the day)
Morning secret: I get Olivia's clothes out the night before, and Brian gets Simon dressed most mornings. The kids pretty much eat the same thing for breakfast every day, so there is no need to think about it, and the coffee pot is programmable.
Looking put-together secret: My closet is essentially filled with the adult version of Garanimals (you remember, the coordinating sets of clothes for kids? Hippo tops go with hippo bottoms.. giraffe skirt with giraffe blouse?) Anyway, I have a wardrobe of neutral colors (a lot of black -- well, I am a designer), and some "pops" of color. When I need to get dressed, pull out a neutral outfit and choose pop of color depending on mood (today was magenta). My make-up is also totally neutral in tones (no need to match lipstick and eyeshadow!), and I grew my hair long specifically so I can pull it into a ponytail in case of emergencies. Add funky but also mostly neutral colored accessories. Complete with groovy colorful handbag. Done.
Childcare secret: It takes a village. I have a part-time nanny (carefully selected through sittercity.com -- another secret!), but I'm also fortunate enough to live close to family who actually like to watch the kids (yes, I know how lucky I am here)! My mom is especially helpful (as she was this morning), and always has the important things on hand (like juice boxes and Teletubbies) in case of emergencies.
Work secret: I love my work (both teaching and design), and I generally work with people that love what they do, too. Mutual appreciation makes inspiration easier and late nights more bearable.
My other work secret is my iPhone. Before it, I had never been a big cell phone user. Too much of a pain. However, now, being able to easily answer emails, take calls and check up on things while I'm out (like at a therapy appointment), keeps me in the loop all day and helps me address any issues immediately. Another super gadget for navigating to client meetings is my Garmin. I'd be lost without it.
Laundry/chores secret: Just do it in between everything else. Save sorting and folding laundry for when your favorite TV show is on. Make your daughter help put the laundry away (to earn marbles, of course). Listen to audiobooks when you clean -- you can catch up on book club and eradicate dust bunnies at the same time! Totally super.
Dinner secret: two words -- Trader Joes. That and/or cooking "big" on the weekend and saving dinners for throughout the week ahead.
So... maybe I'm not exactly super. Like all the smart women (and men) I know, I've developed tactics and built support systems that work for me; gradually refining how I navigate through the day, the week, the month. Maybe that is the not-so-secret secret: you figure out what works for you, and then you keep at it.
But, I do know one more pretty-super secret. It is as sure an antidote for cryptonite as can be found on this planet. An ancient bit of wisdom passed down through generations of super women....
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