Wednesday, October 23, 2013
Tuesday, October 22, 2013
Last #T5Tue, I talked about the difference between a psychoeducational and a Neuropsychological evaluation.
But where do you go? Here are a few suggestions of where you can start -
- The Children's Evaluation and Rehabilitation Center (CERC) in the Rose F. Kennedy Center | Albert Einstein College of Medicine. (The Bronx)
- New York Presbyterian
- The McCarton Center
- The Child Study Center | www.aboutourkids.org | NYU Langune Medical Center
- Resources for Children with Special Needs - they may be able to suggest someone.
- A Parent' Guide to Special Education in New York City - this book provides many suggestions of places to have your child evaluated.
- Consult with a special education specialist or advocate.
- check my NYC Resources
- Ask your pediatrician, your child's current school or other special needs parents. Word of mouth almost always works for me. They may be able to point you in a direction or give a referral.
What you NEED to keep in mind when searching for an evaluation site:
- Do they accept insurance? Or the medicaid waiver.
- If they don't - will they work with you so that you can submit bill to your insurance.
- Will they be able to provide specific suggestions?
- Will the doctor be willing to testify (if you have to go to an impartial hearing)?
- Ask how they will structure the written evaluation (and roughly how many pages).
Catch up with the #T5Tue Series:
Last week's post: Finding the Appropriate School Placement
and follow the #T5Tue series: More Tips for Turning 5
FREE Talk with Special Needs Consultant Sarah Birnbaum
Date: Wednesday, November 6, 6:30-8:30pm
Location: Watch Me Grow
361 East 19 Street
Sunday, October 20, 2013
Children and teens with autism and other developmental disabilities can be taught the language of nonverbal communication with the practical strategies developed by veteran special education teacher Pat Crissey. More than 100 activities break down elements of body language into teachable components.
Body Talk: Teaching Students with Disabilities about Body Language is available on Woodbine House for $23.99.
Saturday, October 19, 2013
Oh...and I'm also in the video.
Just to clarify some things in the video:
* Norrin was still getting home base (and center base) services from a SEIT (Special Education Itinerant Teacher) between 3 and 5 years old through CPSE (Center of Preschool Special Education). Unlike like our Early Intervention experience where we got really lucky with an amazing therapist, we went through 6 SEITS in 2 years before hitting the jackpot with a really great person. One SEIT quit after 3 days because of parking (she was used to visiting homes, where she could park in a driveway) and another SEIT told me, "my husband has concerns about me coming to this neighborhood." One agency dropped me after I expressed concerns/complaints about a SEIT.
* Norrin was placed inappropriately during his kindergarten year. That was the year I had to sue the Department of Education because the school failed to provide an Occupational Therapist. After 8 weeks of paying out of pocket (totaling $1250.00), I was given a waiver letter to continue outside OT services and no longer required to pay out of pocket. The OT was able to bill the Department of Education. I sued the DOE for full reimbursement for the money I spent on OT and later that year, I had to sue again to have Norrin removed from the school.
* For the last 2 years we've been paying out of pocket for ABA therapy at home (after school) from an agency called Center for Autism and Related Disorders. We use our medical insurance to pay for this therapy. I am very lucky to have a job with really good health insurance coverage (we have an autism advocate that helps file medical paperwork) and thanks to the Affordable Care Act, I live in a state with autism coverage.
* Over the last five years, I've read many books that were helpful and inspiring. However, they are predominantly written by white, upper middle class women who were able to either move, hire an attorney and/or quit their careers to stay home with their children. These were not options for me. And reading these books in the beginning, I felt as if Norrin would never be able to "get better" since I could do any of the things I was reading about. I now know better.
Friday, October 18, 2013
|image via istock.com|
Thursday, October 17, 2013
October is Breast Cancer Awareness Month. The month to think pink and have faith for a cure.
Breast cancer is the most commonly diagnosed cancer in Latinas. Even though Latinas have lower breast cancer rates than white women, they are more likely than whites to be diagnosed at a later stage, when the cancer is more advanced and harder to treat. Latinas are also more likely to die from breast cancer than white women diagnosed at a similar age and stage.
The other day I was scrolling through my phone, trying to clear out space by deleting photos, messages and apps I don't use. I came across a text message I couldn't delete. It was from my friend, Della.
Aside from a few photos, a signature in my yearbook, memories and her funeral prayer card - that text is all that I have left. And I'm not ready to let it go. It still doesn't see real. Or fair. Della was too young to die (only 38). She had a daughter. A mother. Family. Friends.
Back in June, my blog friend Shell of Things I Can't Say allowed me to guest post and I decided to write about one of the last times I saw Della alive.
(note: when I originally wrote the post, I changed Della's name to Martha.)
I remembered. It was taken twenty years earlier, on the last day of senior year. I wore a blue and white floral shirt, she proudly wore our senior class t-shirt, my arm around her shoulder, both of us smiling into the camera, our yearbooks in our laps.
We were just girls then, with bright eyes, big smiles and bigger dreams. We believed we had our whole lives ahead us. It was a time without boundaries or regrets. Before responsibility, motherhood, disability and sickness.
We were girls who didn’t know the years between then and now would go so fast. We didn’t see ourselves, twenty years later, sitting in a hospice room on a Saturday afternoon.
“It’s one of my favorites too,” I said.
She smiled. “I looked healthy.”
I said nothing, not wanting to agree but we both knew Martha was right. I looked away ashamed that I put off seeing her for weeks. But I was scared. I had never visited anyone at a hospice before. I hadn’t seen Martha in a little more than a year. But I knew the breast cancer spread to her brain. And I knew that Martha had little time left.
Wednesday, October 16, 2013
Monday, October 14, 2013
We exchanged our vows in casual cloths by a waterfall in the courtyard of the hotel for all guests to see.
A year later on our 1st year anniversary, The Husband and I threw a wedding reception. The party was for our family. I just wanted the pretty dress. But even that day was low key.
It was on that day - our 1 year wedding anniversary that we were supposed to exchange rings once again. The Husband picked them out, really. I wanted to go to the local jewelry store but he did his homework. He found this Japanese jewelry store in Soho. We picked out our rings and had them engraved.
Mine: He won me over.
His: She wore me down.
On the day of our anniversary party, we meant to exchange/renew our vows. But we got so caught up with family and friends and the dancing, eating and celebrating - we never did. At the end of the evening, when it was just us - we exchanged rings. No vows or words were said. Just our rings and a kiss.
|1 year wedding anniversary June 2004|
As I sat in the hotel lobby on Sunday morning with my suitcases packed, staring at my naked hand, I started to cry. I thought of my flight from New York to Atlanta - how with every bump of rough air I clasped my hands and looked at my ring. How could I get back on a plane to New York without it?
Hours later, I walked out of LaGuardia airport and was greeted by The Husband and The Boy. Both were happy to see me. And I was happier to see them.
By then The Husband knew I lost my ring and he was upset but he helped me put things in perspective. "That's not the ring I first put on your finger. The original ring means more to me."
Both rings have a sentimental value to me for different reasons. When he offered to buy me a new ring, I refused. I don't want a new ring. I want my ring.
Later that afternoon, before heading out to lunch I slipped on the silver ring - my original wedding band and smiled. It's still too big and the ring guard annoys me but it's mine. I still wanted my other ring but I was grateful I had at least one. A ring is a ring - it means everything and yet ultimately it means nothing.
Last June we celebrated ten years of marriage. It's been a decade of highs and lows. Our marriage is far from perfect. There are days we wear each other down and days we win each other over. We laugh, we love, we fight, we move on.
A wedding ring is symbol of our commitment but it's not the thing that binds us and keeps us together. Our love does that.
Sunday, October 13, 2013
The New York Birthday Show comes to the New York Hall of Science in Queens on October 20, 2013 with the biggest birthday party ever to provide families with tons of birthday experiences under one roof. Open to parents and children of all ages, attendees will have a blast at the ultimate birthday party and receive unprecedented insider access to some of the best entertainment, hands on activities, dessert samples, and DIY products currently available in area.
- Showcases of the Best Party Venues
- Performances from NYC’s Best Entertainers for Kids
- Cupcake and Cake Decorating Stations
- Sampling of sweet treats
- Cool Decorations and Supplies
- Amazing giveaways from the show’s over 65 exhibitors including fabulous prizes like a $500 spa birthday party from Glitzy Chicks Spa Parties, 2 hour face painting package worth $150 from ShellBell Face Painting, a 1 hour clowning package worth $300 from Bubbles the Clown and more!
- All Day Access to the New York Hall of Science and the Science Playground. If you've never taken your kid to the Hall of Science, this is the perfect time to go.
When: Sunday October 20th, 2013 10 am – 4 pmAdvanced Ticket Savings: Buy your NYSCI admission tickets in advance before October 19, 2013 at http://www.nysci.org/event/new-york-birthday-show-2013 to save up to 20% off. Cost: $15 Adult (18+) $13 Child (2-17), Student (w/ID), Senior (62+)/ Under 2 Free
Where: New York Hall of Science - 47-01 111th Street, Corona, NY 11368
Cost: Free with NYSCI Admission - www.nysci.org/visit-main/tickets/
Friday, October 11, 2013
Every night this week, I've wondered if Avonte's cold, hungry, tired and missing his mother. Every night this week, I've held Norrin's hand a little bit tighter. This story hits too close to home for me. And my emotions are all over the place.
Avonte could easily be Norrin in a few years and it's scary to see how easily a kid could fall through the cracks of a broken system.
Like Norrin, Avonte was in a 6:1:1 classroom in a Queens public school (District 75). Avonte walked out of his room, down two flights of stairs and passed a security guard. The guard asked Avonte where he was going, when he didn't answer (because Avonte is non-verbal), the guard assumed he was "one of the regular kids." The school took an hour before notifying Avonte's mother, Vanessa Fontaine.
The school was absolutely negligent and it's a disgrace. How are special needs parents supposed to have faith in the public school system? For me, it's just another glaring example of how the public school system is ill equipped to work with individuals with special needs. Something NEEDS to be done.
I think of Norrin's kindergarten year and how hard I fought to get him out of that public school and away from District 75. And while I love Norrin's current school, still I wonder. Avonte reminds me of how vulnerable we really are. There are so many people I have to rely on - teachers, bus drivers, matrons, baby sitters. Will they be able to keep Norrin safe?
Yesterday morning, I saw Avonte's mother on television and I cried. I could see the pain in her eyes and feel her heart ache. When you have a child with special needs, wandering is your worst nightmare - especially in a city like New York.
"[Avonte] is supposed to have one-to-one supervision at all times," Fontaine [Avonte's mother] said through tears. "He has the mental capacity of a 7- or 8-year-old." (CNN)I don't know Avonte or any member of his family. But I grew up in Queens, I have a special needs sister who went to school in Long Island City. I have a son with autism. This is too close to home for me and I am praying for Avonte's safe return to his family.
And I want to do everything within my power to help.
Whenever a white child with autism goes missing, my social media feeds are saturated with posts and tweets. Blog posts are written and shared, hashtags used. There is this sense of urgency. I haven't seen that with Avonte Oquedo. When a brown kid with autism goes missing, the sense of urgency doesn't seem as great.
Autism is a spectrum and it comes in every color. All of our kids matter. Avonte could be any of our kids. And I wish that more were being done in the media.
New Yorkers often get a bad rap for being rude and apathetic but in these moments - we all really come together as a community. That's what I've seen this week. And that makes me so proud of my city. It gives me HOPE. Hope is all we have right now.
Tonight (Friday, 10/11) at 5pm there will be a vigil in Queens for Avonte Oquendo at the tent next to Center Boulevard School in Long Island City.