We had a meeting today to discuss the observation done by the schools and to re-visit Mairead's IEP. We came to a decision that I am not thrilled with, but that I can live with. They are going to give her a spot in a REGULAR ED preschool program (through EvenStart) for 1.5 hours, 3 days per week. She will continue to get the 60min of speech that she has now.
The benefits of this program are that the teachers are "Highly Qualified" (as determined by the state) teachers, and that one teacher used to be a SpEd teacher. Also, placement in this program gives somewhat preferential consideration for placement in regular preschool in the fall. This is important because the school I want for her is tough to get in to. Also, the teachers are free to refer her back to the SpEd program if they feel she needs additional testing or help. The 3 day per week part is nice because it gives her more of a routine. And, this can start pretty much immediately, which is better than waiting for neuropsych, waiting for mediation, etc. The immediacy was a big selling point. I am tired of her getting no help from the public schools and she needs more structure. Her current school is very warm, happy, loving, etc, but pretty laid back. I think she needs more structure and more of a 'push.'
The things that are less than great are 1- that the time is T-W-Th 1-2:30. Exactly in the time of the boys' nap... No idea how I am going to get around that and transportation is not provided because it is not a SpEd classroom. 2-I have to pull her from the school she goes to now. They cannot provide her with the support/instruction she needs, but I know she likes it there and is comfortable, so once again, I have to take her away from people she loves and a place that is familiar.
The worst part of the meeting is that they are GROSSLY underestimating the needs she has. One woman (pre-K SpEd teacher) told me that I should hesitate to label her as 'special needs' until we see how she does in preschool. To which I replied, "She had a stroke. I would say that is a pretty special need." I was bullshit. Don't even think of telling me this kid is typical or doesn't have unique circumstances/needs. So, while I can live with the offer they made, their refusal to acknowledge her serious need is unacceptable. We will have to meet every school year to revise her IEP, and until they accept that she has a serious need, we are going to be in opposition at every one of those meetings. I am trying to see the big picture of helping her NOW so that we can enable her to be successful in the future, but I seem to be alone on this.
I don't have the energy to type it all out, but about 15 minutes in to it I knew they were not going to offer anything so I interrupted someone and said, "It seems that you are not going to put her in a preschool program, and if that is the case, we can just go to mediation and not waste anyone's time."
Everyone kind of froze and seemed pretty surprised that I just threw that down. That's when they came up with the offer to put her in the Even Start program. There was a lot more discussion, debate, crying (by me), and restraint (by Dave, who wanted to throw something at the woman running the meeting), etc, including me asking how it was ethical for them to deny this kid services when they know that they have the ability to help her. No one answered that.
The Speech-Language Pathologist was awesome. Mairead sees her once a week and she 'gets' it. She made some recommendations for goals, etc, and expressed her numerous concerns about Mairead. No one really seemed to care, but she at least went to bat for us. As I was trying to decide what to do, she told me that the EvenStart program was a good one and that it would be a good place to start until I get the neuropsych report, etc, and could have more data. I trust her, so I said ok.
I agreed to this because it is better than nothing. And, I told them, "I will accept this because it is better than nothing, and because she needs something now, but we need to revisit this after the neuropsych report arrives." Oh, of course, we are looking forward to that, blah blah.
I guess that's it... I will probably think of more throughout the day. It was painful. I actually said at one point, "I feel like I am in the Twilight Zone here. You have the ability and resources to help this kid and you won't do it." Again... crickets...
Oh- and I brought up things like, "She doesn't know how old she is. She can't tell me what she wants for Christmas because she doesn't 'get' Christmas. She does not know how to tell you her name, or my name. She is not potty trained, she can't tell you what she did at school." They tell me that is all PRETTY TYPICAL BEHAVIOR FOR A THREE YEAR OLD. On what planet is that????
Beyond frustrating.
So, that's where we stand right now. We'll have to wait and see how this plays out and what the neuropsych eval says. Thanks for being so supportive- all of this has been incredibly difficult for us (me, Dave, my parents, and everyone who loves our little girl) and we just want to feel like we are doing everything we can for our daughter.
3 comments:
Maghan,
I was thinking of you guys today. I am very glad that you got "something" to help give Mairead what she needs and deserves. Hopefully, they will see that she needs more and do just that. You ARE doing everything you can for your daughter and I have so much empathy for you when you say that it is "beyond frustrating." Even though I am a public school educator, there are a LOT of things I do not understand about the Mass public education system. Keep fighting when necessary, and keep being the awesome mother that you are and everything will work out. xoxo
I'm exhausted just reading that post, so I cannot imagine how you must be feeling. Mairead is indeed lucky to have you and Dave going to bat for her and fighting for the services she needs. I am happy you came home with something, but I do hope that they give her more in the future. If your cell phone dries out and you need to chat, just call!
What a load of crap. If it were me, I'd call my federal and State representatives and put pressure on them to do the right thing. We have laws in place the protect our most vulnerable children and provide them with the supports they need and this is unacceptable. Apparently, the CPSE team is having difficulty comprehending the situation and need a little "extra" help themselves. Call the elected School Board Members and pitch a fit to all of them about this. Make a complaint to their superiors ~ school superintendent. Make their life just as difficult as they're making yours and Maireads. If that doesn't work, draw media attention to the situation.
Hey, maybe if you soak them in some rice, their ears will dry out and they'll be able to hear what's really going on here (Not everyone will get this, but you will).Might be worth a try.
How exhausting. Why does everything have to be a battle? Don't people understand what it's like on a daily basis caring for a child with special needs? If they had a clue, they wouldn't be adding on layers of stress and aggravation. Be strong and keep fighting.
Imagine what it's like for those who have children with special needs and don't share your level of communication skills or insight into this situation. What a shame. Children always suffer at the hands of ignorant adults who care more about their bottom line than doing the right thing.
I hope the new program works out for your family and Mairead.
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