Monday, March 1, 2010

The Scariest Fight of My Life and Winning It!

Not long ago, I got what was probably the best news I ever heard in my life. Logan had won his impartial hearing. The city would now support our decision to send him to the state-approved private school he was currently attending and would thus fully pay his tuition starting from back in September when he was first enrolled.

Those of you who follow this blog will not know what I'm talking about because the matter was under litigation and so I could not speak about it publicly. Basically, in short, last year, Kai and I decided that what the city offered to Logan as an educational placement for Kindergarten was inappropriate and so we needed to find other options.

I truly believe my panic attacks originated from worrying about where he would go to Big School so this chapter in my life is a huge factor in attempting to answer the question, "Can Mom be Calm?" I believe that for many parents of special needs children, the education issue can be a tremendous source of joy and comfort but also of heartbreak and frustration.

In Logan's last year of preschool, I started worrying about where he would go to kindergarten. I worked really hard calling everyone I could to learn about the process and to see what is out there for Logan. It was so overwhelming. There was so much to do. There was so much I didn't know and so many decisions that I had to make. Everyone was giving me different advice.

"No, you don't need a private evaluation," I heard from some. "The city will give you one."

But I also heard, "Yes, you definitely need one, here's the number to where we did ours, we paid $10,000 but it was worth every penny."

Uh, I didn't have $10,000 to spend on a private evaluation and the last time the city gave Logan a psychological evaluation had been two years prior and no one from the city ever called to schedule a new one. I was really confused.

I had to deal with decisions like should I get a psycho-educational evaluation or a neuro-psychological evaluation? What is the difference and which one is better? Should I get it at a university and pay only $700 dollars but then have to wait until the end of the semester to get it or go to a private psychologist and pay upwards of $3,000 and get it within a month. What do I ask them to figure out if they can do a good job?

Those days, I felt like I was on the phone everyday, finding ways to get the most for my money. I'd also be on the phone calling different schools (public and private) to see if they had a program that would fit Logan. I felt so much pressure and really didn't know how to find these appropriate classes for Logan. Additionally, I didn't want to wait for my meeting at the end of the school year to find out the city's suggestion. I needed to have a look-see for myself first.

The pressure didn't end there. Slowly, I came to suspect that the public school special education system would likely not have what Logan needed: appropriate academics (because of his above average IQ) and appropriate support in a small class setting. If it existed, it was truly hidden to me. Thus, I started to look at state-approved private schools. These schools will have their tuition covered by the city and state if the city agrees you should be there.

Here is where you get really scared. I am almost certain that the odds that you'd get into Harvard are better than your child matching into these schools. There are so few seats and so many children needing a spot. I prayed so hard for him to get into these schools. I put fake acceptance letters on my "vision board" where I put pinned up things that I wished for on a wall. I guess the board worked because he was offered spots in not one but two amazing schools that were both state-approved. (If you don't go to a state-approved school, you have to sue every year to get some tuition reimbursement. Ugh.) There he could get what he needed and now all we had to do was ask the city to say yes.

But alas, the city had other ideas for Logan and we found those to be very inappropriate for him. His teachers, therapists, and evaluators did too but their sage advice was not followed and the city insisted that Logan belonged in a general education kindergarten which would have no special education teacher. We knew in our hearts that he was not ready for that.

Thus, Kai and I decided that we'd have to go to court knowing full well that if we lost, we'd lose all the money we spent on our lawyer. (But if you win, you get much or all of it back.) I never imagined that I would have to spend so much money just to get an appropriate education for Logan. The bills were mounting and then we had to make another scary financial and emotional decision.

The case wasn't going to be heard until the fall and would go on into the winter so the question was..... where would Logan go to school until the judge reached a decision? Many children are usually given the option to stay in their current school and so were we and while that might have been okay for Logan, in the end, we asked ourselves, where would he go if we won? It is not as if the schools that accepted him would hold the seat for him. That is not fair or fiscally sound for the school.

We had a choice. We could pay the tuition to the school somehow and keep his seat so that if we won, he would have a place to be and his education would be uninterrupted. However, if we lost, we would lose a great deal of money and risk traumatizing Logan by taking him out of a school that "gets" him and send him to a place where he'd likely be very lost and would act out. The teachers would have no special education background either. The whole thing seemed incredulous to me. Less then 12 months before this, Logan had been kicked out of a class in which half the students were typical. He then ended up in a preschool class with a special ed teacher, two aides, and 6 other students and things were great for him. Now the city was suggesting that he be in a classroom with no special ed teacher and with 24 or more typical children. He was not ready for that. We made up our minds to fight back but how much could we do?

Kai said no way to paying the private school tuition up front even if that would be the only way he would secure his acceptance there. The thought of using all that money made me angry too but, the thought of winning this case and Logan not having a place to go was unimaginable to me. I literally couldn't picture it. What do other families do in this situation?

Well, if you have money, I gather it is a bit easier to decide to risk your money and pay the tuition until you win and get it all back. If you lost then you could appeal and continue to pay and keep your child there while you retried the hearing process.

But what about others who don't have this kind of money? What do they do? Sadly, I think many families must wait it out in their current schools (even putting five year olds in a class with three-four year olds) and if they win, they try to work something out and hopefully their child will be accepted to an appropriate school in the following school year but I'm an anxious person and there were just too many unknowns in this equation. I had to hold onto his seat as much as I could.

I told my husband that I wanted to use what little money we had to keep fighting. If we ran out while we were fighting, we would deal with it then. I told him that both our lawyer and I felt that we had a strong case. She told me that Logan's hearing request was over two times the length of her average hearing request. That is how many points we had to support Logan's case. I told him that I wanted Logan to have a great start in Big School. It's a lot of money but we were more sure to "lose" if we didn't secure his seat by placing him in the school ourselves and hope for a positive outcome.

It is never an easy decision to fight this way but that night I told Kai that I wanted to risk it because this was the only way we could actually "win," ie. Logan best secures his chance to go to an appropriate educational setting. But sadly, Kai refused to talk to me about it and I decided to keep my mouth shut and not argue, even a little. I never act unilaterally but if he continued like this, I would. I even made up my mind that if he wouldn't agree with me to use our money then I would borrow it somehow.

However, it only took one day for Kai to change his mind and agree with me to place Logan in the school that accepted him. I was grateful that I shut my mouth and just waited for him to come around.

This whole process from filing for a hearing to actually getting a decision took approximately 6 months. During this time, I had never done so much faxing, photocopying, and running around in my life. Every fax had to have a confirmation sheet. All those confirmation sheets had to be scanned and sent to my lawyer. All progress reports had to be scanned and faxed. I visited many different types of public educational settings. I took notes and talked to as many teachers as I could. I did this all by myself.

It really bugged me that I had to go this far. I always wondered, what would happen to other families who didn't have the resources I did. We are by no means wealthy but I am able to stay home, find affordable independent evaluations for Logan, talk to people and learn things, and go to a million places to get things done. It took so much time. How would a person with little resources fight? How does a working mother do this? How does a single mother do this? Would a person like my mother, an immigrant with little English know to fight or would she just accept what they were offered? Where would immigrant parents like my mom, get the money, the precious advice, the attorney if they disagreed with what they were offered? The whole process angers and still bewilders me. Does it really have to be this hard?

Luckily we won but many tears were shed along the way and many migraines happily took over my life because of this. Dealing with these officials gave me so much anxiety that I'd have a hard time breathing after doing things so simple like making a brief phone call with a secretary to arrange a meeting time. Anxiety came from other directions too.

Whenever we got bad news along the way, my husband would get so mad and then he would ask me if our lawyer anticipated any of this would happen or ask why she hadn't warned us ahead of time. I never had an answer for him and really didn't want to ask her such questions. Nevertheless, I felt very responsible and defensive since I chose her by myself. I think that was probably the biggest mistake I made. I should have dragged him with me to that meeting. He went to the first lawyer interview we had but we ended up choosing someone that I had met by myself. She had come highly recommended to me. In think he would have been less anxious and I would have felt less guilty whenever our case became more difficult had we both met her together.

In the end the lesson learned was simple but hard to execute. That is, to not be afraid and to not give up. There is no harm in asking around to see if there is something more appropriate for your child. It may possibly be out there and you just don't know about it because you don't have the right resources or no one ever bothered to tell you. Luckily for me, I had some friends to hold my hand and give me sound advice. I had great preschool teachers and therapists that confirmed what I knew about him. I also got really lucky and had an excellent neuro-psychological evaluation. You can't make good decisions unless you have good information.

Additionally, while I do not like to part with my money, I dislike more the idea of Logan in the wrong educational setting where he would invariably get in trouble everyday and end up disliking himself and have no friends. This would cause me great grief and I'm sure it would have affected his behavior at home. Moreover, I would be stressed with the phone calls and the suspensions and the constant explaining and teaching I would have to do (assuming they would listen). Putting him in an appropriate educational setting is almost the same as putting my family on an appropriate emotional footing. How can we be happy if Logan is miserable?

I am just grateful for the support I've been given throughout this time. I'm grateful to my husband for working together with me on this. I'm grateful to my lawyer for answering my anxious "what if" emails at 11:30 pm. (There were many.) I'm grateful to all the professionals in Logan's life who adeptly articulated what his needs were. In the end it all got done and while I hope I never have to do it again, at least I know now that I can live through it and sometimes we can prevail. We are truly blessed.

Photo: Summer '08 This is the summer where Logan started to be less afraid of the water and venture under the sprinklers and let his face and clothing get wet. This is also the summer when I started to understand just how difficult it is to place bright children with significant special needs. When he was asked to leave the school with the integrated class because they no longer could handle his needs, I was upset because they told me this news in the summer when the placements for preschools were basically all filled. To that, they told me not to worry because he can stay there until I find him a new school. "How is this supposed to comfort me when you just told me you can not help him?" I wondered in my head. I finally got an apology letter from the principal after I wrote a formal complaint letter. All in all, I learned a lot from getting kicked out of a special ed school. Special ed staff and teachers, as well meaning as they are, are not super-people. They can make poor judgments too. We as parents must be on top of everything always.


Anonymous said...

I am very happy Jen, congratulations. I will not go this route for Adam this year, i will give a try to the public options.

Good luck

BEE said...

i am so glad you won the fight
im so sorry it was a long hard fight for you but you did it
take a big breath and let all that anxiety go
yuour a great mom

Hartley said...

I am so glad to be able to read your journey. I know it was hard Jenn, but YOU DID IT! And Logan will be forever better for it.

Now, I am back to looking up our State Approved Non-Pubilc Agency schools for my son. *sigh*

Never give up, right?


Anonymous said...

Awesome news! I am so glad you were successful. There is nothing more satisfying than knowing your child is getting the right school.

I just wish it could have been Public School & saved you all the hassle! Really, why schools, officials and politicians think that 25 Kinders have the exact same needs is completely beyond me!

Anonymous said...
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Anonymous said...

I'd like to say bravo to you. This is the first time I've read your blog. I am also AsianAmerican and have 2 boys, one with significant special needs (read: he's 8, can't talk, little comprehension, not toilet trained, walked when he was 4...but is the sweetest kid). I have a full-time job, I am just about divorced and have had a very stressful couple of years. It's simply nice to read your blog; I can relate to so much, esp since we were in the nyc school system up until last year. The number of hoops they make us go through just to get what our kids need. Hang in there, keep up the great work!

Penny Williams said...

Congrats Jenn! We have to advocate for our special children win or lose.

The fault really lies in the laws governing our special education system. My son, 7 yo ADHD, was denied special education, despite needing help with handwriting and sensory issues from the occupational therapist, because he is TOO INTELLIGENT. How does that make any sense? How does a strength cancel out a need when neither have anything to do with each other.

But that's the way IDEA is written. It takes more than one need to qualify.

Ultimately beyond that though, our mainstream public schools are broken. Even at the elementary age, it's all lecture and worksheets. There isn't any more hands-on lessons. No creating a tornado in a 2-liter bottle; no growing plants to learn about the scientific process; no Thanksgiving plays to cement our history in their minds; no creating a community of their class w/each having a job to teach life skills. If our children were taught actively, instead of passively, they could succeed with everyone else (the majority anyway). Our schools are broken and I wish I could instigate a change but don't know how.

You are fortunate to have special needs schools, I think. I don't know of any in my small town. There are certainly private schools that would be a much, much better match for my ADHD kid but I can't afford them.

So I, like you, spend many hours a week working on how to make my child's school experience the best it can be for him. His 504 Plan has helped but a teacher that really understands him and a classroom where hands-on, active learning is the norm would be ideal.

I am so glad you were finally able to share this story with all of us. And I am so glad you were able to secure the education for your son you felt he needs. Your courage is inspiring.


Spectrum Mom said...

Thanks so much for sharing your story. It makes me feel a little less crazy. I worry every day about how we are going to fight to get my kids the educations they deserve. Just today I got rid of one SEIT agency to start fresh with a new SEIT agency. Such stress, and I felt bad about it even though the ones he had were not effective! ugh. Thanks again for the inspiration.