Following the path
Because we have teenagers and because we live in metropolitan NY, our children have friends of all races, religions, and ethnicities. As a family, we have attended several bar and bat mitzvahs over the past years. The functions following the ceremonies have ranged from somewhat basic (none were at home parties, however) to affairs to remember (more like weddings). What had the most impact for me was not the high-end table service and wonderful food at one event in particular. It was the bat mitzvahs of two girls from Isabella’s class that really got me. Okay, have you ever been […]
Just a comment
Over the years, people (mostly friends) have made comments about Isabella. Most of the comments were not solicited and those that I am writing about were all unwelcomed. For example, years ago when Isabella was about 4-years-old, her speech-langauge pathologist (who Isabella still sees) referred to Isabella as “special ed.” What was she talking about? Yes, Isabella received private speech, occupational, and physical therapy, but she wasn’t even a student yet. Or was she? It took that comment to make me realize that I may need to consider an alternative school setting for Zachary’s twin sister. It took me about […]
It takes a village
The motto “It takes a village” was popularized by Hillary Clinton, though she certainly did not coin the phrase, nor did it apply to her life raising Chelsea in the White House. For parents with children with developmental disabilities, it certainly does take a village or at least some awesome relatives and fantastic friends. This does not always mean that these adults are only around when your child is in the ER because of a high fever with the possibility of a seizure. Sometimes it’s easier to be around for the emergency events. It’s very clear when they occur. What’s […]
Life as a Teenager
Three teens in the house. Living the dream! (FYI: for those of you who were never teenagers — this is sarcasm.) The angst! The communication breakdown. The fashion sense (or lack thereof)! Isabella experiences many of the same stuff as typical teens. Of course, there are differences. The most glaring to me, as her parent and as a former teen (yes, teens, I was once a teenager), is her lack of a social life. Most Friday and Saturday nights, Vitoria and Zachary have plans. Victoria’s are, of course, made on Mondays and discussed throughout the entire week; while Zachary’s are […]
How far is too far?
When you have a child who needs help, you will do anything for your child. This applies to all children. If your kid shows potential as an artist, parents will provide supplies, enroll the child in classes, or contact a friend who owns a gallery for advice. Parents of children with developmental delays are no different. Well, maybe a little different. We will really go the distance…and sometimes that distance may be too far. Is it too far when we drive our children to appointments with therapists that take 3 hours round-trip — even when there a great therapists in […]
Maybe we did a good job
When you have a child who is not developing at the same rate as her peers, you worry about the future. Really, you worry about all of your children. I see many of my friends’ grown children living at home. Some have graduated from college and have gainful employment, even careers. Others are, well, lost. We really can’t predict who will get out of the house and who won’t — for our neurotypical kids. For our “different” kids, we definitely know. And as they age, we know for sure. So we worry. We consult with attorneys. We look into state […]
Roots & wings
It has been awhile…hasn’t it? Way too long. A lot has happened in my life (you can check www.essentialmusings.wordpress.com/ for that update if you’re so inclined) and in Isabella’s, too. She’s doing something that I never imagined that I’d allow. She’s at camp…overnight…as in sleep-away. Growing up in Brooklyn, we always knew kids who went to camp — some for the entire summer. I went went to Girl Scout camp once when I was 10, so my BBF Joanne and I could be with the Dilworth sisters who had just moved from Brooklyn to Connecticut. That was an abberation in our […]
The fashion show
Every year Isabella’s school hosts a feel good fundraiser. It’s the fashion show. Isabella talks about it incessantly. Most of the kids in the school walk down a runway wearing clothing that has been lent to the school for this very purpose. This year, I think, was the first year that Isabella walked, or rather ran, with a classmate, rather than a teacher. She was really excited. I didn’t give it much thought until she jumped on the runway nearly dragging her partner. Clearly in a hurry, Isabella didn’t stop to get her picture taken. And I was worried about […]
Who am I?
Isabella recently stated that her school was different. I was surprised that she verbalized this fact. I thought, wow, this is great. Isabella knows who she is. She pointed out that her school had a large, grassy area. Yes, that’s different from your brother and sister’s urban schools. But that wasn’t exactly what I was expecting to hear. So, I told her that her school was for children with learning disabilities. Quite indignantly, she replied, “I don’t have a learning disability.” My first thought upon hearing this was: she has no idea who she is. When I told the story […]
Different, Not Less
The spoken motto of the made-for-TV movie and true-life story “Temple Grandin” is different, not less. And Temple certainly proves herself that. She speaks too loudly and too fast; she does not understand body language; she spins around and around for longer than normal; and she experiences tantrums as a teenager — to name a few of the qualities that label her as different. Those of us with children with neurodevelopmental disorders are all too familiar with these and other “non-typical” behaviors. Our children are mocked, shunned, and left out of “normal” childhood life. Those were not, however, the Temple […]
Gluten free not so junk food
One of my jobs as a parent is to make sure that my children do not subsist on a diet of junk foods — as many American children tend toward. It’s the same job that I do in my other life as a nutritionist. We all know what defines junk food. To keep it simple, think about all that is white — white flour, white sugar, white shortening — and artificial such as flavoring and coloring. You get the idea. On top of reducing the nation’s white food and artificial ingredient consumption, I also am known to bring down the […]