First school - got program recommendation

[johnark]

Hi,
I posted about Bleshman school one down below and thank you again for all replies about my post.

I had meeting with my Child Study Team (CST) and got schedule for school in-take visit on next Friday. At the meeting the CST gave program that my son will get while he's attending school - PT, OT, ST 30 mins/day - 3 days/week and he will be also attend school during summer vacation but he probably will get PT, OT, ST 30 mins/day - 1x/week.
Do you think this is ok to start?
CST said its only their recommendation and the actual decision will be maid by school (to increase or to decrease the program) after they review the documents. I'll know about it on next Friday when I visit the school.

Patrick got PT 2x/wk, OT 2x/wk, DI 2x/wk (now DI 4x/wk since last month) from Early Intervention program. all sessions were for 1 hr (45 mins therapy + 15 mins paper work). The CST always said system from Early Intervention and from school district is different but I am just qurious.
All of you had more therapis from Early Intervention then get less when your angels start school? Do you think I should request for more therapies when I visit school? Or should I just wait & watch for few months then request to increase?
Any opinions are always welcome.

Thanks.
_________________
Jeeyoon

Patrick (Del +) - 4/1/2009
diagnosed 4/26/2010

[Magster's Mom]

I would wait and see. Don't forget that school itself is a great way to work on all the goals you'd work on in therapy.

We actually don't get any therapy at school at all. An OT and PT come and visit school about once per month and make suggestions to Maggie's team. She works on PT as part of her regular gym class and with extra time on a special bike and wheeling her wheelchair. She can go anywhere she wants in her wheelchair and she's FAST! She's also a fast walker, almost running! They work on OT as part of doing her schoolwork on the iPad and with many other materials.

Instead of therapy, all kinds of stuff is just incorporated into her schoolwork and it seems to work really well. It also means that she is working on her goals in natural environments, as part of real work, not working on goals in isolation. Research shows this is a good way to help students really master their learning and be able to transfer skills into many areas.
_________________
Erin Sheldon, mom to Maggie, del+, DOB 8/14/03 and Ella DOB 8/19/06. www.sheldonhickey.com

See Maggie star in her movies on YouTube: http://ca.youtube.com/user/magstsersmum

[sallyshackcloth]

Hi Jeeyoon, I agree with Erin about making the therapy a part of the day at school. It's important though that you feel he is getting regular visits by the therapists who consult with the teachers. I would ask that the teacher keeps you informed about visits so you have some idea of the visits and that he is not being forgotten.
It's important too that if you need any help for ideas for practising therapy at home you can contact the therapists involved. When Hannah was in primary school we had regular meetings with the teacher and therapists through the year and it is important that everyone is 'on the same page'! Best wishes, Sally.

[johnark]

Thank you for your opinion. I had meeting with school members (teachers, therapists, nurse and Social worker) and all went well.
However, I got another problem.
CST previous told me they can arrange pick up at my home and drop off at babysitter's home (about 3 mils from my home - less than 10 mins by car) when we had meeting 3 times. I asked about that at all meeting but after our last meeting (it was on 3/9), two days ago, CST called me and said it is not possible. He is scheduled to attend school in 4/2 and only about a week left. I have to find someone drive him to babysitter's home when he arrives at my home around 3pm or I have to find new babysitter who can watch him from 3 to 7 at their home. (or daycare in my home town) I can't find anyone so far. In worst case, I have to change my work hour to part time from Full time then I will loose all benefits (including medical).
I never know it is so hard to send a child to school. so depressing...
_________________
Jeeyoon

Patrick (Del +) - 4/1/2009
diagnosed 4/26/2010

[Magster's Mom]

Hi Jeeyoon,

I just sent a link to this thread to a friend of mine in NJ who faced the same issue and finally won. Hopefully she will respond or get in touch.

I would consider looking for a disability rights advocate to help you. I think that an advocate would show them you know your rights and won't back down and will help you get results.

GOOD LUCK. I hope this works out. Too many of us (myself included) give up working full-time exactly because of this kind of issue. Its not the fault of our child's disability, its the fault of agencies and bureaucracies who refuse to provide reasonable supports.

Here in Ontario, we have a transportation system for people with disabilities who transport children in these situations. Maybe there is something like that you for you??

Erin
_________________
Erin Sheldon, mom to Maggie, del+, DOB 8/14/03 and Ella DOB 8/19/06. www.sheldonhickey.com

See Maggie star in her movies on YouTube: http://ca.youtube.com/user/magstsersmum

[rburdine]

Hi Jeeyoon,

I am in Mercer county and we had a similar issue. Is the sitter within your district or in another school district? Within your district, it shouldn't be an issue as long as pick up and drop off are ALWAYS at the same locations. Our district had no problem as long as I wasn't trying to changing the locations on them.

Our problem was that we needed Sophie picked up and dropped off at her daycare which was just across the district line into another district. This they refused to do. So each year I wrote a letter explaining why I wanted her at her daycare and made sure to cc it to the Superintendent and director of transportation. If someone tells you it can't be done. Ask whom you should speak to next and keep moving up the line.

In my case, since they "couldn't" do the pick up and drop off I told them the alternative was to bus her to an afterschool program in district which would require the school providing Sophie with a one on one for those activities. The transportation person changed at that point and agreed with me that the whole thing was silly and should be done on a case by case basis.

I think they have to work with you on this. They can't expect you to stop working because they don't want to drop your child at the sitter.

Good luck!

Becky

[johnark]

Thank you Erin and Thank you Becky.

I'm in Bergen county. My home at Little Ferry and babysitter is in Palisades Park. Both place in Bergen county I believe but my case manager said it's different district and Little Ferry bus company only do provide pick up/drop off service within Little Ferry. She said they changed bus company (i'm not sure if it's possible?) and the bus company policy won't go other areas. She said there were few cases that picked up/dropped off different district before so she told me Yes. I can't understand why they can not find this information earlier.

My problem is I can't find any day care /babysitter (except my current babysitter) that willing to take my son until I come home. I usually come home 7-7:30 (or 6:30 if no traffic on the road - very rare).

Becky, you mentioned writing letter but to whome? and cc to Superintendent and director of transportation? How can I get those information? I guess I can't get those until my son start school. I only spoke to my case manager at Little Ferry Child Study Team. She told me she'll look for if there's any alternative way but I believe she didn't do anything. There's a team director (I guess director supervise the CST) but I had little bit unpleasant experience so I am kind of afraid to contact her. Other than these people is there any person I can look for to solve this issue? Case manager told me to contact DDD and other organization to get some fund for babysitting or daycare but that was it. I felt like I'm asking too much from them whenever I spoke to them.


sorry for another long stories.
_________________
Jeeyoon

Patrick (Del +) - 4/1/2009
diagnosed 4/26/2010

[rburdine]

Boy do I know that feeling. Ok call your case manager and ask whom you can speak to in transportation about your issues. She should give you a name and number. If she doesn't, then call the superintendent's office and explain you are having a transportation issue and can't identify whom to talk to.

If transportation tells you that it is a district policy not to bus out of district, ask her how they handle cases like yours where Patrick needs very specific care from someone that can be trusted and this is the person you trust. Remind them that Patrick can't talk and tell you how his day was or if he is being treated well. Sorry - but really talk up how difficult it can be to find good reliable help. If they say it is a district policy, ask them whom you should speak to next and repeat. It is a pain and you may feel like you are being a bother, but as long as you are polite and ask them why this policy is this way and what can you do for an exception etc, they will continue to deal with you.

Try not to take it personally. It's like insurance companies denying everything in the hopes that a fraction will just give up. It's hard when you are already struggling with a new school, but don't give up.

Let me know if that helps.

Becky

[johnark]

Thank you Backy.
I sent email to my case manager today after I read your post. But her reply is not what I expected. She just gave me taxi company to arrange to pick up my babysitter to my home which cost $15/one way and since I included all team member on CC she’s telling me that maybe others will give better idea. I’m not sure how to react.
Maybe I wrote something not clear?
I add here my email and reply from my case manager.
I'm sorry to ask you but if you have time can you please let me know what you suggest??
I’m really tired dealing with these people.


** this is reply from my case manager:

On Wed, Mar 28, 2012 at 4:42 PM, Heller, Deborah <DHeller@littleferry.k12.nj.us> wrote:

I am sorry to hear how difficult this is for you. I just spoke with John at Scotty’s Taxi, Cliffside Park, (201) 943-1234. We have found this company to be reliable. The cost to Little Ferry from Palisades Park is approximately $15. You could arrange for the taxi to get your sister-in-law (babysitter) daily at a set time, maybe 1:30 p.m. This would give plenty of time to get to your home before Patrick arrives. I spoke with John at Scotty’s Taxi and explained that the person who needed to be transported had to be in Little Ferry daily to meet a child coming home from school and could not be late. He said it was not a problem. Would this be a possible solution?

I see that you have sent this email to the other team members and Susan Wright, maybe they have more suggestions.

Debby Heller



*** Below is my email to my case manager.

From: Jeeyoon [mailto:jyk3202@gmail.com]
Sent: Wednesday, March 28, 2012 2:04 PM
To: Heller, Deborah
Cc: CST Staff
Subject: school bus

Ms. Heller,
I always thank you for all your work for Patrick however, I was so disappointed and stressed when you gave the bad news that by the bus companys policy, the bus will not drop off Patrick at Palisades Park as you told me at the meeting. I believe I asked 2-3 times to make sure for this and I was told it will be ok.
You recommended look for other babysitter/daycare, so I searched. I usually come home by 7:30. Theres only one daycare in Little Ferry right near Little Ferry Elementary school but they do not stay that late and the fee is too much for me. Most of babysitters are also request more payment than what I pay to my current babysitter and also many of them are out of Little Ferry (in Hackensack or Ridgefield, etc..). My current babysitter is willing to care Patrick until whatever time I ask without extra payment. Maybe I can find right person for my budget and for Patricks condition in later time but not now. After spending a whole week to solve the issue myself, I think the easiest way to solve it is getting transportation to Palisades Park. Its only 2.7 miles and about 7 mins by car from my home to the babysitters home. I am sure you did your best to look for the solution and Im sorry to ask you again but can you please find any other way?
My last option will be reduce my work hour to be at home by 3 or 3:30 but this will cut all the benefit Im getting including medical insurance. Patrick should be in medical care all the time because of his condition so I must keep my work hour. He also had seizure recently and we ended up at ER.
If you can not get any new outcome then can you please let me know whom I can speak to in transportation about this issue. I may get negative response but I must try. If you can not give such information then can you please give them the detail about my son and ask them for reconsideration. Without the bus service, I cant send him school and I am really afraid he will miss all the chances to get better.
Thank you for reading this and Im hoping to get some good news.
Jeeyoon Kim
_________________
Jeeyoon

Patrick (Del +) - 4/1/2009
diagnosed 4/26/2010

[Magster's Mom]

Hi Jeeyoon,

I think your message was very clear. It is also absurd that you need to pay your sister in law to come to your house every day, and pay for the taxi, so that your sister in law can't watch your son in her own home.

Your message was very clear. The worker ignored you when you asked who you should speak with at transportation. I would write back and explain that if your sister in law needs to watch your son in her own home, not yours, in order for the childcare to be affordable.

I would ask if they would taxi your son to your sister in law. This is very common in our school board and Maggie has gone to school by taxi before. For such a short distance, its really not a big deal.

I would repeat that you need to know the name of the person at transportation you can speak to about this and explain that you know from talking to other parents that exceptions can be made, so you need to talk to the person who is responsible for making those exceptions.

Personally, I think if you don't get anywhere, you should write a letter to the newspaper or local TV station explaining what is happening. I think some publicity would get their attention. The entire thing is absurd.

Becky, any other suggestions??

Erin
_________________
Erin Sheldon, mom to Maggie, del+, DOB 8/14/03 and Ella DOB 8/19/06. www.sheldonhickey.com

See Maggie star in her movies on YouTube: http://ca.youtube.com/user/magstsersmum

[johnark]

Thanks Erin.

Now, I am in really strange situation.
On 3/29 (Thursday) - I got email from CST director after my case manager's email. She said she'll give it one last try but the answer won't be different.

On 3/31 (Saturday) I got call from bus company. Woman from the bus company called Morgan transportation said she called to give me pick up & drop off schedule. I told what my case manager told me about the transportation but she doesn't know anything about it. So I told her I can't understand the bus won't go for 2.7 miles for just drop off and told her my situation. She said she need to speak to her boss and get back to me on Monday. And we disconnect the phone. Then she called me 10 mins later again and she just asked her boss and boss said they'll work it out. I asked again to confirm "so your company will go to Palisades Park to drop off my son" and she said Yes. I just need to give drop off address and person's information at the drop off location. She asked if I will send him on Monday to school. Patrick had visit Lab to take out blood in the morning so I told her I will give her call later. She said call back anytime.

I didn't get any reply /answers from my CST team so today (Monday) I email to case manager for any good news. I didn't mention her I got call from the bus company because I got feeling that they're not telling me truth and I want to see how they'll answer first. (Do you think I did wrong??)

I finally got email from CST director about her one last try.
Her email said she called transportation agency SBJC (she still didn't give me contact information as I asked) and tried her best but no good news. Director also said the best situation in my case would be to have someone watch Patrick in my home or get taxi service like my case manager mentioned before. At the end she said Patrick supposed to begin school today and ask me to make decision wether to cancel the transporation if we are not using it. Also asked if the bus company contact me.

I'm not sure what's going on. So the bus company and agency is totally different and do schedule differently?

** I attached below the email from my director in case if I misunderstood any part of her email. If I do misunderstood, please let me know.

Jeeyoon:

I did call the transportation agency SBJCto plead the case for you. However, they cannot do this and the woman spokewith me for a long time and explained why this has changed and why they cannotmake exceptions. At the end of the conversation, there was nothing more to besaid. It cannot be done.

The best situation, in your case, would beto have someone watch Patrick in your own home after school until you get home.The taxi service for your sister-in-law would seem viable as Patrick wouldrequire less babysitting time now that he was in school. That, however, is upto you and your husband. Please let us know when you make a decision as schoolwas supposed to begin today for Patrick. We will need to cancel thetransportation if you are not using it. Did the bus company contact you?

Regards,

Susan


Do you think I should tell her that bus driver will go Palisades Park? will that cause any issue? I can't tell anything to this CST Team because I can not trust them with my heart.
Thank you for reading.
_________________
Jeeyoon

Patrick (Del +) - 4/1/2009
diagnosed 4/26/2010

[Magster's Mom]

What a crazy situation! I'm sorry I didn't see this sooner. So what happened?? I think if the bus company said they would figure it out, I'd stick with that for now. Always better to do something and show it can be done so that they, later, can't say "sorry, its impossible, it can't happen that way."

I don't trust your case manager and it sounds like they are doing a terrible job being supportive. Bravo for the bus company. I think I'd work with the bus company for as long as possible just to establish the precedent that it can be done.

So what has happened??
_________________
Erin Sheldon, mom to Maggie, del+, DOB 8/14/03 and Ella DOB 8/19/06. www.sheldonhickey.com

See Maggie star in her movies on YouTube: http://ca.youtube.com/user/magstsersmum

[johnark]

Thanks for your concern on this Erin.
I scheduled to send him on this Monday 4/16 but he got sudden fever on Monday morning so I pushed back to next Monday. I just hope he doesn’t get any fever next Monday.

It looks like SBJC is the agency and schedule bus company for pick up drop off and my district only talk to SBJC. I asked my case manager if she ever call the bus company and she said she communicate with only SBJC – the bus agency. According to her Bus company follows Agency’s policy so Bus company won’t do different. I also check SBJC webpage and one of their policy said Parents only can contact them through the district. I just wish case manager told me about these things before and show me their policy. Now I know she didn't lie. I think case manager was not lying. It looks like she just didn’t get what I want to know and she just answered what she likes to answer.

Bus company still told me that they can drop him off at the location I told so like you told me, I will stick with them and I won’t tell my case manager about it.

Thanks again for your thoughts and support.
that helped me lot - really thank you.
_________________
Jeeyoon

Patrick (Del +) - 4/1/2009
diagnosed 4/26/2010

[johnark]

Hi,

I just want to update about my previous issues with school bus in case anyone wants to know.

Like I mentioned on my last post here, I got call from the bus company and told them my situation and the bus company willingly to drop him off where I want. I didn’t tell my CST about it since I don’t think they’re helping me anyway. It was OK until the summer program started. I had no idea that the District change bus company each year so for the summer extended program, they hired different bus service. Bus for summer class said they will drop him off at home only. I asked CST for any way to change this. Since I didn’t tell CST about the spring bus service, they were questioning how I was managed to send him school before summer. I told them what happened and I told them I need bus service to continue my son’s education. Then, district CST sent letter to school that they cancel class for Patrick. I learned this when I got letter as I was cced. I was so tired to talk to district CST after all I hear from them was that there’s nothing they can do for me on transportation issue.

I almost gave up sending him to school this September. Then I remembered that Becky (from this site) told me I should send letter to Superintendent so I did about one/two weeks before school starts but I didn’t put much hope on this. About 3 days before school start in September, I got email from Supervisor of district CST. The email said she got bus service as I requested (dropping Patrick off at Babysitter’s home) and she pointed out that my letter to Superintendent did not do anything on this. She worked hard to find bus service to do a courtesy service. She also pointed out that this service is only for this year (9/2012 – 8/2013) and I should not expect to get same service next year again. Then she asked me to make consent letter that as soon as Patrick off from the school bus, it is my responsibility whatever happened to him. I couldn’t understand why she wants this? Does this means that if he dropped off at home and something happened at home then it is District’s responsibility? I thought they will not be responsible for anything happens after he off the school bus regardless the location. Anyway, I gave what she asked and Patrick started his school as scheduled.

All was ok. Then, I got letter from district on September 20 about the spring bus service. The letter was saying that I made an illegal private negotiation with bus driver (from spring bus service) and asked driver to drop Patrick off at different location. The driver was so kind and did a favor for me but in result he lost his job. The letter stated that I should not do such negotiation in the future for my son’s safety and now everyone know where Patrick is so it is safe and no one needs to worry. (I think I posted about this letter here before because I felt that she’s insulting me.) Basically the letter point that I made dangerous request and I made the poor nice driver lost his job. This was not true. I spoke to the bus company, not to a driver privately, and the company told me the driver will drop Patrick off where I wanted. So I sent response letter to district CST to correct this fact. Then I got reply email from supervisor of CST. She said the investigation was closed when they sent me the letter about the bus driver was fired. She said the bus company denied my side story and CST will do another investigation and will let me know if anything comes. So I’m waiting if they find out anything else from second investigation but I really doubt that they will really do second investigation for this one.

Now, I don’t need to worry about Patrick after school but this bus comes so late in the morning. This result that I go to work late every day. But I can’t ask them to change pick up time at this point since they keep saying that they did something that against their rules and regulations. I guess once you get some things then you lost other.

This is it. I’m not sure if same thing will happen next year if I send another letter to Superintendent. I will update next year again. (whether you like to know or not.. )
_________________
Jeeyoon

Patrick (Del +) - 4/1/2009
diagnosed 4/26/2010