Friday, April 27, 2012


Yesterday Sam turned seven!  I can't believe I have been a mother for seven years.  It was a regular day - everyone had school/work.  I gave Sam a musical toy as his gift.  He likes these Baby Einstein toys which look like stuffed animals with pictures of instruments on their paws. You press the paws and it plays a tune.  Hannah got the turtle for Christmas but Sam quickly claimed it and began holding in right up to his ear and playing it again and again and again. .  I found out they make the same toy in different animals so I got him the Panda (and actually the lion a few weeks back as well) to be extra.  We had ice cream cake after dinner and called it a day. 

It was, as his birthdays always are, bittersweet.  I am happy that we are in a better phase with him. He is happier so fewer tantrums, and we have a decent therapy schedule for him.  The fact that he is getting older is hard because chances of his gaining clear communication and cognition are getting slimmer and slimmer.  

But we keep trying!

Sunday, April 15, 2012


Something about this doesn't sit right with me.

Earlier this year I found an in-network provider of ABA hours through my health insurance. The BCBA running the program used to work in my son's first school so she knew him. We met and discussed her program. She said she like to get the kids out of the house doing community experiences, social skills classes, swimming, etc. I stopped her right there and said I was not in position to shell out for a bunch of classes if that was going to be necessary. She told me that the classes were covered because they were part of the therapy. We got started and it seemed to be going well. Then. a few weeks into the program, I got an email telling me that she wanted to bill me extra to cover "expenses" not covered by insurance like the swimming and incidental expenses when they go out in the community. She wanted to double my co-pays (an extra 120 a month). I told her that I already provided a few dollars for each community outing and that I could not budget to double my co-pays. I pointed out that I had specifically asked about the cost of the class before we started. SHe dropped the issue.

A few months later I got a bill for double my co-pay amount. I emailed and asked what was going on. SHe replied "We talked about this - it is for extra expenses". I reminded her that we DID talk about it and that I had said that was not ok. As an in-network provider it is illegal for her to bill me beyond the co-pay. Since then she has started dropping all his acitivties. SHe only wants to send a therapist to work alone with him in his room. She doesn't even want him going otu for community experience. SHe has told me that she either wants me to pay out for swimming or to get disabilty to pay for it. Here is the kicker - she wants me to cover the cost of swimming so she can have her therapist dribve him there and she can bill the time as ABA. Does that sound like fraud to you? My husband took Sam to the swimming class once because the therapist was sick. There was nothing for him to do but sit and watch and then get Sam changed after. If there therapist were in the water with him I could understand calling it ABA but if there therapist just takes him there and I am paying for the class, how is that ABA? If she has to cut the class because she can't run her business that way then that is fine but she shouldn't ask me to pay for something that she then wants to bill as one of her services.

I understand she has to run her business and be able to make a living but it feels likes dropping everything that involves taking him out of the house is just mean spirited. Sam loves to go out and they know that. Sam already get "at the table" ABA all day at school and we have a home program from the school. The whole point of signing up with this provider was to add something different to his schedule. It was also to get a little respite for the rest of the family members. I used his Wednesday outing to take a shower - it was the only time possible. I used his other outing to take Maya out. If they are in his room every time then that is all out the window. Going on a community outing doesn't cost her any extra. I send a rather critical email to the group last night so now I am waiting to get kicked out of the program.

Friday, April 13, 2012

This is one of those posts that sounds a little pathetic and is full of self pity. Sorry in advance.

When I moved in with my husband I was finishing up graduate school and working full time. I didn’t really have time to make a lot of friends. I was commuting from New Jersey to New York City. Then I had Sam and between working full time and spending time with him, I didn’ t have time to make a lot of friends. I stared to – I got to know a few more people around the neighborhood and we spent some weekends with friends of my husband. I changed jobs and was working closer to home. I thought I was getting into a routine that would allow me to meet other young parents and build a social network. Then Sam started to show his symptoms. My life became all about therapy, research, and work- as it should have in that situation. As it became more and more difficult to take Sam places I just stopped going anywhere but therapy appointments, work and the grocery store. I have people I talk to at work but there are limits to that. When a friendship doesn’t extend beyond the walls of a particular building it doesn’t fully develop. The financial problems don’t help. On exam or professional development days when we have more than the usual 25 minutes for lunch most of my coworkers go out to eat. Because I worry about splurging on a restaurant meal, I often opt to sit in my room with whatever I packed to eat that morning. No one really calls anymore. I understand why – you can only hear no so many times before you just stop asking.

I am a relatively introverted person. All my life I have needed a certain amount of time to myself so I think I handle the isolation better than many might. There are days and even weeks when I don’t notice or mind at all. But then there are times when it is just lonely.

But even the occasional bought of loneliness would be manageable for me. I might feel down about it from time to time but I would work through that. What is really making me upset right now is that it is starting to affect Maya. You see, her birthday is coming up and I can’t give her a party like she wants – because I have no one to invite. Maya went to a “real” birthday party last summer and ever since she has been dreaming about having a party –with friends- when she turns 4. I assumed that would be possible. I assumed that once she started pre-school she would start getting play date invitations and birthday invitations. So far, she has only had a play date with a girl she knew before school started (don’t misunderstand – this girl and her family are lovely - Maya would play with her every day if she could). She has not been invited to a single birthday party this school year. I don’t know if it is just the age, the particular culture of this school, that fact that I work and so none of the other parents know me? I tried to put her in a Sunday school program to make more friends (and since I would be at church I would meet the parents) but I haven’t found a place that has any kids her age in my religion. Do I have to convert???

I realized how quickly Sam’s and Maya’s birthdays were approaching a couple of nights ago. I started to realize that even if I wanted to plan a simple “kid” party, I don’t have anyone to invite. I don’t have other parent friends with kids who could come, I don’t know any of her classmates’ parents, and our extended family is very limited. We WILL have family over to celebrate but that will be her grandmother, and her great aunt and uncle who are in their 80s and maybe her 2 year old cousin. We love to have them over and it will certainly be a fun time but it is not a get together with friends which is what she keeps asking for and hoping to have in addition. (I am not minimizing the importance of a family celebration here - please don’t misunderstand)

I realize that at her age this is not the biggest deal. She probably will have no memory of not having a birthday party at this age but what I keep thinking about it that I have no way to change this. There is no chance I will ever be able to quit my job. My hours will never allow me to drop her off/pick her up at school so I will never know her classmates or their parents well. Sam is not likely to improve to the point where we can start reconnecting with past acquaintances. At age 5,6, 7 she will notice if other kids have birthday parties and she does not.

So what do other parents of special needs kids, who also have typical childre,n do to give their typical kids a chance to socialize?

Tuesday, April 10, 2012

Roll Tape

I finally got a video of Sam's mouth movement. I emailed it to the neurologist today. Have any of you seen this before?