Here is the letter I wrote to the Director of Special Ed letting her know about the conflict we had with the ESCE department and our subsequent decision to pull J-man from their services.  Note:  Names and certain details have been altered/deleted to protect ... well, you know, everyone. Also, I would like to note that we are challenging the appropriateness the program placement for J-man, not the appropriateness or efficacy of the programs themselves. 

Dear Ms M.

< deleted section pertaining to some other committee stuff I have done with her, and basic intro stuff   > 

In September 2009, our Birth to Three teacher had a discussion with us regarding the opportunities for placement for J-man when he turned three. We were told that he would not be able to enroll in the Regular Preschool until fall 2010 because he would not be a legal 3 (and since he aged out in February, it was not an option). Our only options at that point were to enroll him in a private preschool and get our services through the Community Based Program, or to place him in the SPED-only room. I asked if we could remain in the Birth to Three program until the close of the school year (3 months) but that was also not an option. We toured the SPED-only rooms and I had some significant concerns. We decided to enroll him at J&J Childcare at that point and have our Birth to Three teacher help with that transition and subsequent attendance. We thought it would be a good trial with a well-known SPED teacher to support him, and if he wasn't able to make it in the environment we would know. For the next several months we were enormously pleased with J-man's attendance. For a near-completely non-verbal child who had never been in daycare, he did very well. Rough days, yes, but far far more good ones.

Our transition from the Birth to Three to the Three to Five program was... rough. Difficult for us, and difficult for J-man. Over the summer he did quite well maintaining with minimal support. He developed a close relationship with his preschool teacher Ms E, and we decided to stay with the Community Based Program. J-man has some difficulty trusting new people, and we felt that it was important to keep him in a familiar and supportive environment. When September arrived, I asked his case manager if it would be possible to get an increase in service time for J-man (specifically 4 hours a week instead of 1). Our reasoning was two-fold. Since J-man has a difficult time trusting new people and we were getting a new teacher, we felt that an increase in exposure to that new person would benefit both of them. J-man could learn to trust that person and develop a relationship, and that person could learn about J-man. This was important because we were hoping to transition J-man in December to the next preschool room where he would have new teachers and lose his beloved Ms. E. Secondly, J-man had begun showing the signs of what turned out to be a language and communication spurt (his first real one!). An increase in service could help scaffold that developmental window and capitalize on it.

We are really not unreasonable people. We certainly would have been willing to negotiate and strategize this request had we been given the chance. We were told at that time that the only option we had for increased service time for J-man was to enroll him in a multicat room. We refused, and pushed. No doubt you know the rest of the story from there.

In our Facilitated IEP this week (after 2 1/2 mind-numbing hours of discussing the IEP) we were told that they would not offer any additional time in the Community Based Program. Instead, they told us of a 'new' class in which J-man could get 'intensive' communication work for the short term in preparation for going into a regular classroom (6 months to a year, which if you think of it isn't that short term for a nearly 4 year old. Just saying.). In addition, they offered to continue his service at J&J Childcare in conjunction, so he would remain in his LRE and get support. We were skeptical, but willing to look at the Ready Set Go room and see if it was a good fit. Personally, I was hopeful that it might be a reasonable compromise and at the very least support his current "spurt".

That evening I was talking to a friend from our local support group discussing this possible compromise. She was confused because... when she was exploring options for her child...she had been told that program was meant for children who were so significantly delayed/compromised that they could not function in a SPED-only room and needed intensive work just to sit in a chair. Can you imagine what hearing that felt like? That this team felt our son was so significantly delayed that he couldn't function in a SPED room???? That we had been misled??? When he has been at J&J for over a year, doing art, free play, even the dreaded circle time. Needing support, yes, but functional. She stated that she could be wrong, but she didn't think she was because she knew another mother from the group whose child is in one of these classes  and her child has severe autism.

So we tried to go in with an open mind but.. let's face it... very wary.

Here is what I saw:

The class was made up of one child who had two adults escorting him in. He was crying, clearly upset about something. The staff had to lead him in by the wrists. One staff member took both of his hands/wrists, lead him to a cube chair, and sat him down. She 'supported" keeping him in the chair while the other staff member placed a lap belt down and got a large red button contraption attached to a glowing fishtank-toy-thingy. Hand-over-hand they had him push the button. The toy lit up, and that was the first moment that his child stopped protesting. He oriented to the toy. They coached him to push it again, and hand-over-hand helped him push it. He calmed again. He pushed it once independently. The toy was put away. The boy was calm, but was looking over his shoulder and fixed on the ceiling, with no orientation to the staff. The teacher told him to look at her, and then hand-over-hand helped him make his hands do a fish movement while she sang some kind of fish song. He was clearly non-verbal and low functioning. I would like to note that while I may disagree with some of the therapeutic techniques used (a different conversation for over coffee), at no time were the staff rough or inappropriate with this little boy.

We stayed a total of 5 minutes.

I invite you to spend 5 minutes with my son. I would love for you to have seen him at our private speech therapy today, where he played 'pirates' with Ms S for over 20 minutes in the first display of real interactive pretend play I have ever seen. I would love for you to talk to Ms S, to hear what she has to say. Or see him later that day, when he and his father had Batman and a toy gorilla battle each other. When the gorilla got hurt, J-man kissed his owie and got him a bandaid. I would love for you to see him as we see him, and then try and imagine him sitting next to this challenged little boy and tell me: Just how would THAT work? In what world does the IEP team live in that they felt THIS was the best place for J-man?
J-man has a significant delays in language and social communication. He is severely apraxic. He has real challenges. We are well aware of those challenges. We are not in any kind of denial. But his potential is incredible and we have a vision. We know what works and what will work. We really do.

At this point, the team has made up their minds about J-man, about who he is and what he can be. We do not accept their analysis. We do not see any way out of this situation, and cannot accept it as it is. Therefore, we see no other alternative than to withdraw him from ECSE.

I am deeply disappointed... crushed, really... because at one time I had real faith.


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