Giving Back

Over the years of being a parent of a child with special needs I have been and still am on the receiving end of lots of advice- finding therapists, medical referrals, toilet training, IEPS, general support, you name it. I am part of a Special needs list serve and also know other parents and their information is often invaluable and not easily accessible.
At times, as a parent, you feel like you are reinventing the wheel when the answers already exist, you just have to find the person who knows them. This is why I very much treasure being on the giving end of the advice chain.
Whether it is support for a new mother, referrals to therapists or explaining how CPSE works, I like to help people.  Not because I am so knowledgeable and amazing, but because I remember so clearly what it is like to need answers and not know how to get them. Just today I had the opportunity to email someone with some information about the Turning 5 process. This mother is confused and hearing conflicting information from different sources. All she wants is to find a placement for her child. While I definitely do not have all those answers for her, I was able to give her some general information that will be helpful in making decisions and point her in the right direction.
Knowing how meaningful it is to me to get a crucial bit of information or just the listening ear of someone who has been there, I am happy to give back in this way. Supporting each other on this crazy journey is what it is all about!

A little bit of knowledge

An exciting development in recent weeks is that Y has really been able to tell us more about his day at school and activities he was involved in. It still requires a little bit of guesswork and interpretation, but it is nice to see his speech developing and that he can share his day with us on some level.
This past Friday, he came home from school and proudly told me that he ate pizza with his reading buddies. This was puzzling to me on a few fronts. As far as I knew, his reading buddies (5th grade mentors who read with his class) only come on Tuesday and Wednesday, and the school was under strict instructions not to give Y any food that we had not sent in. I wasn't sure what to make of his claims, but thought I saw some tomato sauce left on his face.
I decided to call his teacher and clarify. She told me that, yes they had made pizza in class that day with friends from a different grade. Although not the reading buddies, these were other buddies :). She said not to worry because she had bought all the ingredient herself and they were all OU-D. I asked where the pizza was made and she told me in the classroom toaster oven, which is what I had suspected.
I gently told her, that while I appreciated her efforts to provide Y with kosher food and to include him in all activities, the oven itself is not kosher, which therefore makes the pizza (in this case english muffins, marinara sauce and cheese) problematic. She felt very badly and apologized. I told her that I will gladly send in substitutes if she gives me enough advance warning.
It  made me realize the truth of the saying, "a little bit of knowledge is a dangerous thing." Y's teacher last year knew literally NOTHING about kosher. So she asked me about every little thing and was very careful. This year, when I initially discussed kosher with the new teacher, she assured me that she knew all about kosher and  how to check for the kosher symbols. It is not her fault, it just shows me I have to be more vigilant.
We had a helpful conversation and I reiterated my request that even if she thinks she knows what is kosher and what is not, Y only be given the food we send from home. She agreed  and said she will try to give my advance warning so I can send in substitute foods for their cooking activities. It is not as exciting for Y that he will not be able to taste the food that they make, but you have to work with what you have.
And the upside is, we are shepping nachas from our big boy who can share a bit more of his world with us day by day.

The iPad has arrived

So after weeks of talking about getting an iPad, I actually took a trip down to the intimidating apple store and came home with a brand new iPad2. I have to admit it's pretty embarressing how apple illiterate I am. I've never owned an iPod, iPhone or i anything.
The salesperson was very patient and understanding and I have been having fun today trying to figure everything out today, downloading some apps and getting a feel for it.
The primary reason we got the iPad is for Y, because there are lots of great educational and communication apps to be had (special thanks to my parents and in-laws for partially funding this purchase). Y actually had one in his classroom this year so he is familiar with it. I need to do some more research to find the right programs. I know there are lists online so will probably spending some time this week figuring out what makes sense to add, especially because not all the apps are free.
I also want to get a good cover to protect our new investment. The sales person told me about an iPad cover so durable, "they can play basketball with it". Knowing my kids, that sounds like the kind of protection we are going to need :) If anyone has an iPad, I'd be happy to hear your impressions/feedback/app recommendations.
Y also had his first day of summer school today and other than having a hard time seperating he seems to have had a good day. I am not 100 percent sold on the program he is attending, but am open to changing my mind. I guess we will see how the rest of the week goes.

Quick solution

So after losing sleep and being aggravated for several hours, I was able to resolve Y's IEP issue pretty quickly this morning. It was a computer error and something they can fix without calling new meetings or getting approvals from supervisors. I am relieved and also feeling a bit silly for wasting all my time and energy freaking out. I have unfortunately had bad experiences before and have learned to expect the worst. I guess I need to work on my attitude/anxiety level a bit. I will add it to my never-ending to-do list.

Good/Bad News

The good news is Y is famous- check him out on p. 16 of the Jewish Week. Unfortunately, the online version of the article does not include his picture. It also doesn't identify him by name...but he looks very handsome. His birthday is also coming up. I cannot believe he will be 6 already. With the help of our prents/in-laws, we are planning on getting him an  iPad because it supposedly has great communication and learning apps. I am excited about this and hope it will be a useful tool. I am definitely open to hearing suggestions about what type of iPad to buy and any app recommendations you may have.
Now the bad news: I discovered tonight that there is a big fat mistake on Y's IEP- all his therapy services are being provided in a group instead of individually, NOT what we had agreed at the IEP meeting. Needless to say I am very very angry and also annoyed at myself for not checking his IEP sooner.
I guess assuming that someone will actually implement the services they have verbally committed themselves to is a big mistake. A lesson I should have learned by now- always second guess the Board of Education and if someone went too smoothly, that means that it will not actually happen.
Excuse me while I go scream and cry and figure out a plan of action!

Fun with the Board of Education

How does the Board of Education frustrate me? Let me count the ways
1) You submit paperwork to request an increase in services for your child and then call your administrator for 3 weeks only to find out that your child's file has been passed on to a different administrator without anyone thinking of informing you.
2) You then call the other administrator and keep leaving messages for about 6-8 weeks straight without getting your call returned
3) Finally on your 10th message you threaten to involved a lawyer and voila, you get a call back THAT SAME DAY
4) The administrator informs you that he can only process your request if you submit new goals
5) You spend the next week begging therapists to write up new goals for your child and fax them to the Board of Education as soon as you can
6) The administrator says he will approve the requested services- victory!
7) Two days later you get a message that the IEP was sent out but returned because they have the wrong address. You explain to them that you moved 18 months ago and have given them your updated address about 10 times and ask that it be mailed to the correct address.
8) You finally get the new IEP in the mail and discover that
-your child's name is misspelled
-the correct address is printed ON THE IEP so it is unclear how it got mailed to the old address
- NONE of the new goals you worked so hard to submit have been included in the new IEP
- There is a mistake on the last page of the IEP because it doesn't list the increase in services that you asked for and that was approved
Then you scream and wonder how somebody who spends all day formulating and approving IEPs can be so inept at putting one together. And you start formulating the voice mail you will be leaving for your administrator on Monday....To be continued

School Report

Last night was Y's Parent Teacher conference. His teacher is really sweet and had wonderful things to say. He is adjusting well, gets along with other kids and his speech is really developing. They are working on ABCs and numbers and he is very interested in learning. The main challenge is really the toilet training, but we are making progress with that as well.
It was nice to hear all about his day and what he does in the many hours he is not home. The friends he has, the games he likes to play, the books he likes to read, etc. It was also nice to get such a positive report about all the wonderful things Y is doing, as opposed to listing the things he cannot do or has delays in.
The teacher shared some cute pictures with us. We loved the one of Y running in the playground, playing soccer. He loves sports, particularly soccer, and my next goal is to sign him up for a soccer class in January. Although we are still not thrilled that he is in a secular school, we do feel he is gaining valuable things there. They have been very accomodating about kashrus and any other issues that have come up.
A's meeting is next week and I am hoping to hear wonderful things again.
Wishing everyone positive and and helpful feedback from their Parent-Teacher Conferences as well.

Crazy story

Last night, I had to go to a wedding in Jersey. We do not own a car so I was reserved a zipcar like I usually do. Two weeks ago a distant relative of the bride called and asked if he and his wife could have a ride. I said yes, even though I was kind of hesitant. I am very OCD about time and don't like to wait for other people. I was also kind of looking forward to having quiet time in the car on the way rather than making conversation with people I don't know. But they needed a ride and I had space, so I said yes.
As we were leaving the parking garage, the woman I was driving mentioned that she was a special education teacher and the kids in her class had graduated today. I always perk up when someone mentions special education or special needs so I asked her where she teaches. She said "PS 199"- the school Y is going to next year. I could not believe it. I told her that my son is going there next year and asked if she knew who the kindergarten teacher is going to be. She said that she most probably will be.
I was totally floored. I mean really, what are the chances of that happening? She seems really nice and it would be wonderful for him to have an observant Jewish teacher who know all about kosher and other issues.
I was so glad that I decided to do the "right" thing and give this couple a ride. I guess no good deed goes unrewarded. It turns out, she may not be teaching the class because the school is trying to force her into early retirement. Either way, it was just a little reminder that G'd is watching out for us, which is always nice.

PS 199

PS 199- that is where Y will most probably be going to kindergarten next year. After 10 months of researching and visiting many many schools, this is the placement the Board of Ed has assigned us. It is a school with a great reputation. We were impressed with the class we saw on our visit today, but then the teacher told us she may not be teaching this class next year!
There is a different school right up the block from us that we really wanted Y to attend but I don't think we will push for it because this seems good.
Still this will take some getting used to. As an Orthodox Jew who has gone to Jewish dayschools/yeshivas her whole life, I never thought I would step foot into a Public School. This is not an elitist thing, just a comfort level of my child being immersed in a school that teaches the culture and values of Judaism: the Hebrew alphabet, the Jewish holidays, just the way of being. It is about being immersed in a Jewish environment.
But yet again, the reality of special needs will dictate where Y goes to school and I, I will just need to adjust my expectations and attitude. Let go the dream of my child being included in a yeshiva and work with what I have.

The 2 Doula Prenatal Meeting

This monday, I attended a prenatal meeting for a client with another doula. I am "sharing" this client with my friend K because K is going to be away for part of the 2 week period after her client's due date and I will be on call for her then. I had never attended a prenatal meeting with someone else and I have to say it was fun and educational. I know the way I like to do/structure things when I meet with clients but it was interesting to see how K runs her meetings. It was pretty similiar but I still learned some new things. And I felt that I was able to offer some valuable feedback as well.
An interesting thing K spoke about was comparing progress in labor to an elevator ride rather than taking the steps. When you walk up steps, you need to pass every floor to get to the 10th floor, one thing follows the other. When you take an elevator, you can skip from 4 to 7 or even 10. Things in labor may be slow at first but then all of sudden you can go from 6 cm to fully dilated in a half hour. It is a good way to look at things and not to be discouraged by an apparent lack of progress or things temporarily slowing down.

On a completely different note, I just need to vent about the lack of efficiency at the board of education. I submitted paperwork and a request for a meeting on April 19th. I have called and left messages an average of 1-2 times a week and what do you think has happened? Nada. Not even a phone call to acknowledge the receipt of my paperwork or numerous messages. I am not sure what the point of this is. They will have to respond to me sooner or later. Why don't they just call back? Do they prefer to be harassed and stalked because I can and will do that. Do they think I am just going to go away if they ignore me long enough? They obviously do not know who they are dealing with...anyway, I think I may actually feel better now that I got that off my chest :)

I'm still here

I've been quiet this past week. Just trying to catch up on a million things and clean for passover.
There is a lot going on with Y and his schooling. His IEP meeting is next week, so we are trying to formulate some sort of plan. We are applying to some programs and checking out a few more. It's March already and I feel like I am always a step behind, despite my best efforts to stay on top of things. Then I make the mistake of speaking to the "supermom" who has everything figured out. She has lawyers, educational consultants and has seen every program that exists in NYC. She knows how to develop an IEP and what her kid's IQ is. I feel overwhelmed and want to go hide. My husband reminds me that this woman is about 15 years older than me and has a background in law. Maybe that will be me 10 years from now, giving advice to the newbies still trying to figure out the system.
I guess it's a good thing that things have been quiet on the doula front this past month or so. But I have been getting some inquiries for May and beyond, so I am hoping things will pick up again after Passover.

The search continues

I haven't posted about this in a while but the search for a school for Y continues. We saw a program that we liked but he would have to take a bus there and it would probably take over an hour. We have managed to take lots of options off our list, which is good except there are not that many options left. Last week I spoke to another Jewish school in the neighborhood (which shall remain nameless) and was very politely informed that they are not equipped to deal with such a "situation." I felt like politely informing them that we are not talking about a "situation", rather my CHILD who deserves a Jewish education just like any other child. The attitude is like- sure, your child should get a Jewish education, just not HERE.
We are checking out another program this week, as well as a secular school the following week. I'm feeling crunched for time because it's February and many schools are at the end of their application process. I don't want to miss any deadlines.
At the root of the matter is still the whole mainstream vs self contained classroom issue that my husband and I struggle with. We would like him to be with his typical peers but not at the expense of him aquiring the skills he needs.
Sometimes I look at him and wonder if he knows how he is the subject of so much worry, discussion, research, phonecalls, etc. Of course he doesn't and it is definitely better that way.
To be continued..

a sad day for jewish day school education

Today was a sad day for the Upper West Side Jewish community. Today, I, along with 3 other parents of special needs children, was informed that our children are not welcome in the communal Jewish day school.
The powers that be had spoken to nameless "professionals" and lay leaders and made a policy decision that they cannot accomodate children with down syndrome or other disabilities in their school. They do not have the facilities or necessary skill set (ie open mindedness) to help "children like that." Never mind the fact that we all know that there is a 10 year old boy with a chromosomal abnormality in their program who is THRIVING and doing well.
The school is confident that this is the right decision, despite the fact that they have not met my child or any of the other children in question. They have also not read any of the reports and evaluations, spoken to therapists or other professionals who know our children well.
The Jewish community can only turn away for so long. The prevalence of special needs in the Jewish community is growing, along with the neeed for a Jewish education for all our children.
I cannot say that I am surprised. But I will say that I am still deeply disappointed.