Off to camp
Posted on August 16, 2008
Filed Under Kids, Life, Relocating | 1 Comment
Considering how infrequently I’ve been blogging lately, I feel a little silly posting a “going on vacation” blog.
We’re in a hotel now, completely moved out of our condo. Everything that’s not with us is in a nearby storage facility. This afternoon, we board a flight for Atlanta, GA. This is a vacation planned and paid for months ago, long before we even considered the possibility of moving. We’re going to relax around Atlanta for a few days, then we’re heading to Camp Yofi in Clayton, GA.
Camp Yofi is a 5 day family camp for Jewish families with a child with Autism. There are activities for the whole family of course, but they also have separate tracks for siblings and parents. It’s a wonderful way for us to have a “normal” experience while at the same time acknowledging that we, as a family with a child with special needs, have more difficulty doing just that.
We get back on Monday, August 25th. Then we’re driving from the airport in Philadelphia to my Mom’s house in New York. We’ll stay there overnight, then Eric and I head back to New Jersey early Tuesday morning to close on both the sale of the condo and the purchase of our new home. The girls will stay with my Mom until Labor Day weekend. I’ll take Wednesday and Thursday to get organized (furniture and appliance deliveries, register the girls for school, clean up) and then our stuff is coming back from storage on August 29. Emily starts school on September 3, and Laini starts on September 8. Whew! Gonna be a crazy week.
Obviously, I’m taking my computer with me. First because I don’t have a home to leave it in, and second because I’m very nervous about being away the week before closings. If anything needs to be done, I can do it as long as I have my MacBook Pro. I’m going to try really hard not to even glance at my work-related email for the week. I set vacation auto-responders on both accounts (C3 & WWD) and I disabled them from pushing to the iPhone. I can’t remember the last time, if ever, I made a serious attempt to disconnect from work. I just won’t think about the avalanche that will await me when I return until I return.
Finally, I received some good news the other day. After reviewing Laini’s records and having all the necessary conversations, the Child Study Team at the school district we’re moving to agrees that the private special needs school Laini attended last year on our dime is the appropriate placement for her. That means that they not only support the placement and will work with us on her IEP, but they will pick up the bill and provide a bus for her. This is such a relief on so many levels. Financially, of course. But also emotionally, knowing that in the end, I think we made the right choices.
Opening new doors
Posted on June 21, 2008
Filed Under Kids | 10 Comments
A few months ago, I said I would never blog about my kids again. I’m going to make an exception for this post. I also mentioned that it had to do with a legal dispute and how what I said on this blog was twisted and used against me.
Now the legal matter is over and I’d like to set the record straight about what I was talking about. I started this post at least 30 times, trying to find the right words to explain what happened once and for all. Part of me wants to maintain silence. Part of me wants to say what happened to serve as a warning to other parents of special needs children who may be considering due process.
Guess which part wins?
Bar Mitzvah lessons
Posted on October 28, 2007
Filed Under Kids, Life | Leave a Comment
Laini’s Bat Mitzvah is scheduled for March 7, 2009. This year at her Hebrew School, all 6th grade families have to go to regular meetings and events focused around our kids’ big day that will happen next school year. Oy gevalt.
Last night, the meeting was a movie night and we all watched Keeping Up With the Steins. If you haven’t seen the movie, it’s a cute, likeable comedy about the “true meaning of a Bar Mitzvah.”
There’s one small section where the young hero’s best friend gives him advice on how to make it though his Haftorah without getting nervous. He tells him when he’s up there on the beemah, he should reach in his pocket and squeeze his balls. Later, during the Bar Mitzvah, you see the boy really nervous and fumbling the words but then he suddenly gets his confidence and completes the prayer beautifully. The camera pans to the beaming parents and relatives and then to the boy as he removes his hand from his pocket and his friend gives him a knowing thumbs up. Ha ha snicker snicker. Wasn’t exactly the kind of humor I like sharing with my kids, but oh well.
After the movie, our Rabbi led a discussion with the kids about what they learned from the movie. They talk about it being more important to love your family than the party. They talk about how you can get really over the top with the party and that’s not right. You don’t need to have a theme for your Bar/Bat Mitzvah party. Yadda yadda.
Then one of Laini’s 11 year-old classmates earnestly and sincerely pipes up with the line of the night…
“I learned I should wear pants with pockets.”
Making a very mobile life work
Posted on October 26, 2007
Filed Under Internet & Technology, Kids, Life, Macintosh, mobility | 2 Comments
Lately, it’s been more like Momneverathome.
I got back from the Convio Summit last Saturday at 12:30 am. Eric left for Melbourne, Australia at 12 noon that day. He’ll be back on November 3rd, then he leaves for Boston on November 5th. Back on November 9th. He leaves for Zurich on November 10th, returning on November 21st. Then Boston again December 3rd-7th.
It sucks.
Not anything he can control. Unemployment sucks more, so we deal.
I have such admiration for single parents who don’t have an end date in sight. I don’t know how they do it.
As I may have mentioned before, Laini is going to a private school that is 40 miles away and we don’t have transportation. So with Eric on the road, I set out with her every morning at 8 am for the hour-long drive to school. Instead of making the long trip back after dropping her off, I bring my MacBook Pro with me and stay in the area near her school to work. I head home with her at 2:45 pm, pick up Emily at an afterschool program and do the afternoon run around with the kids including homework. I’m averaging around 3-3.5 hours a day behind the wheel.
There are a lot of places with wifi within 10 miles of the school. We signed up for a T-Mobile Hotspot account so we have a few Starbucks and Borders Books to choose from. There’s also a Panera Bread, McDonalds and even a Dunkin’ Donuts offering wifi at various fees (or free). Unfortunately, after a few weeks of doing this I’m going out of my mind. Some folks love being around strangers and find themselves more productive with the buzz of conversation and latte machines. I am not one of those people. I can do semi-mindless tasks in these places. And surfing is certainly comfortable enough. But blogging? Editing? Making/receiving important phone calls? Forget it. It’s just not working. Literally.
I need to be able to find a quiet place to work in the area without worrying about whether wifi is available. So this afternoon I stopped by a Sprint store and picked up a Sierra Wireless AirCard 595U. It’s a USB EVDO modem, $79 after discounts and rebates. Service is $60/month. Sprint coverage is excellent around here and it works very well. I still have to find that quiet corner with a power outlet, but at least now I don’t have to worry about it being a hotspot, too. My Mom suggested looking at fancy department store bathrooms. They usually have “ladies’ lounges” where women can hang out for hours. If there’s a power outlet, it may be worth a shot.
I’m giving Jott a try. I’m coming up with a lot of ideas and I’m remembering tasks while I’m driving, with no possible way of writing them down. With Jott, you call a number and record your thought, and the service translates it to text and emails it to you (or to someone else if they’re in your Jott contact list). Of course, I have a Bluetooth headset for my Blackberry which has an excellent voice dialing application. “Call Jott” and my hands never leave the steering wheel (except to push the button on my ear) and my eyes never leave the road. Safety first.
I use Toodledo as my task manager. Toodledo supports email->task using a special email address. I configured Jott with my Toodledo email address, and now I can call in tasks and they appear in my task list. Or, if you Jott to “Reminder” and give the date/time, Jott will nag you at the appropriate time. I wonder if there’s a way to email a calendar entry to Google Calendar or otherwise Jott it in? I’ll have to look in to that.
It still sucks, but I’m doing everything I can to make this ridiculous situation bearable.
Autism is Not a Curse: An Open Letter to Jenny McCarthy
Posted on September 28, 2007
Filed Under Kids, Life | 11 Comments
Dear Jenny,
While on the train yesterday, I read the cover story about you in People Magazine. Bravo for you and your beautiful son. Thank you. Anyone who is talking about autism and its very real effects on a family must be celebrated.
Your son is 5 years old, and as a fellow parent of a child diagnosed with an Autism Spectrum Disorder, I know the joy and relief that comes out of seeing your child make significant progress thanks to intensive early intervention. That is the message of your book…Act early. Be relentless. It makes a difference. But you scare me when you talk about your child as if he has recovered from autism. Even the title of your book, “Louder Than Words: A Mother’s Journey in Healing Autism” makes me wince a bit.
Autism is forever. When a deaf child gets cochlear implants, he is still deaf. What you are doing will help minimize the symptoms and stigma of autism in your son’s life, and will give him the best chance of leading an independent and fulfilling life. But you haven’t climbed the mountain yet. You’ve scaled a small hill next to the mountain. The mountain is still ahead of you.
Don’t ever think, even for a moment, that you have autism in the rear-view mirror. The experts will pat you on the back and say “job well done!” Don’t fall for it. Don’t take your eyes off the ball. You’re not fighting for today, you’re fighting for tomorrow.
I was in your shoes 6 years ago. I had a 5 year-old who thanks to intensive early intervention made incredible progress in a very short amount of time. On the day my daughter was diagnosed with Autism at 2.5, I was 9 months pregnant with her sister (who was born 6 days later). My daughter sat in the room with the pediatric neurologist and stacked blocks while refusing to answer the simplest of questions or even acknowledge that anyone else was in the room. So when the diagnosis of PDD-NOS came a few minutes later, I wasn’t shocked. Up until that point, I had somehow convinced myself that she knew all the answers, but just didn’t want to speak. I said those ridiculous words out loud, but deep down, I knew. I thought that because my pediatrician kept dismissing my concerns about her development, that she would miraculously start speaking and be “normal” one afternoon. Lesson learned: A mom’s instinct is never wrong.
For a year, I was overwhelmed with parenting an infant, getting services for an autistic child who couldn’t put two words together, and my father’s terminal illness. Then I started connecting to other parents, and I realized that a passive approach wouldn’t cut it. I found my advocate’s voice, and fought like the dickens to get my daughter the services I knew she needed. Watch out to anyone who stood in my way. A typical day would include a preschool program for 2.5 hours, a quick lunch and a nap for both kids, then an afternoon filled with therapy sessions. A typical week consisted of a combination of a couple a days of oral motor therapy, a day of speech therapy, and a couple days of occupational therapy, and a day of physical therapy. In between, we intensely worked on the most basic skills at home. It was more than a full-time job.
Shortly after this intense program began, she started to show amazing progress. Quickly. She put words together, and then those combined words turned into thoughts and sentences. She found connection to the people that were closest to her. She played with toys appropriately. She started reading. Every day was a new miracle. By the time she was your son’s age, the world of autism seemed like a distant memory. She was fully included in mainstream classes in school. She still required special education support for sensory and social issues, and she struggled in math, but there wasn’t a conversation we couldn’t have. Like with your son, it was a gift that she could explain to me what she was thinking and feeling while she was stimming. If I was a famous actress dating Jim Carrey, I’m sure I could have written a book about my daughter’s “healing” from Autism just like you did. There were teachers and therapists who questioned that she was even autistic to begin with!
But Jenny, children don’t stay 5 forever. Embrace the gifts you’ve earned to this point, but keep autism in front of you. Don’t let yourself think you’re going to push it completely away. Ever. Now at 11, my daughter has above average measured intelligence, is fully verbal, and is a joy to be around. When she was 2.5, I was told that she may never develop language. Now she will walk up to me, give me a big hug and say “I love you, Mommy” freely and easily. Her diagnosis is now officially Asperger’s Syndrome which is the high-functioning end of autism. Non-verbal language and subtle social cues completely escape her. That’s harder to learn when you made it this far on outstanding rote memorization skills. She can retell plot, but doesn’t get the “big picture” easily. Emotionally, she’s a lot younger than her 11 years.
She knows she has Asperger’s Syndrome and what it means (she reads books on the subject meant for adults), and “autism” is not a dirty word in our house. It’s part of who she is. I truly believe that to treat autism like a curse, to be ashamed of it, or to act like its symptoms are repulsive will destroy my daughter’s sense of self. Autism is just one of the many things that make her an incredible young lady, and I treasure every inch of her…including the autistic parts that cause her to obsess about a single topic for hours on end, retreat in social situations, or cry when routines change.
And you know what? I still have to fight aggressively to get her the support she needs, just as intensely as I did when she was 3. Now she’s approaching the age where I am trying to teach her to advocate for herself. My goal is for her to be able to say the words (in her own way, of course): I have autism. I can’t do it like everyone else, but if you give me the chance and you rearrange your expectations a little bit going in, I’ll do it better in the end.
Would I rather have two “normal” kids? Actually, I don’t know. I think my daughter’s autism has made me a better person. It certainly made me a better advocate. If my daughter cared about what people thought of her as other pre-teens do, would she have that same genuine sweetness she now possesses? I don’t know. I don’t have the ability to turn back time, so I don’t know what could have been.
All I know is that I wouldn’t trade my girl for anything, autism and all. I hope in 6 years after the many battles I know you still have to face, you’re saying the same about your son.
