Peaceful. That’s how I am feeling in this precise moment. Niksdad is at work, Nik is asleep, and I am online with my cup of iced coffee at my side and our two cats nestled onto their respective perches. There’s a quiet in the air outside; the calmness of an early summer afternoon stirred only occasionally by the hum of a lawn mower in the distance. It is as close to being alone as I will come for a very long time so I revel in it. For the first time in a few days I actually have time to sort out the muddle of things that have been swirling through my brain. Perhaps now I can begin to make some sense out of some of them and begin to articulate thoughts and feelings.
Nik’s last day of school was Tuesday. That means we got his year-end report card. It still cracks me up to think about report cards for preschool. Well, after reviewing Nik’s report card, I am definitely not cracking up any more. At first glance, the things that stood out to me most were all of Nik’s unmet goals and objectives. Only one of his goals was met and the rest were nowhere close. My gut reaction was outrage and then fear of what it might mean.
These unmet goals, were they evidence of my son’s failure or incapability? The school’s failure to effectively teach my child? My failure as a parent to push harder, sooner? I let myself dwell in that icky, upset space for a couple of days as I tried to find answers as to what to do next.
I’ve decided that, in this case, there are some opportunities for “do-overs” and I fully intend to take advantage of each one I can. Today, I can look at Nik’s IEP and see the glaring evidence of what we didn’t know we didn’t know back in September. It was Nik’s first time at school and, I strongly suspect, the school’s first encounter with a child as involved or complex as Nik. In a combination of or ignorance and an effort to give Nik and school time to figure each other out, Niksdad and I blindly agreed to what school put forth for Nik’s goals and objectives. In all fairness to the school, I have to say that —though Niksdad and I already suspected Nik has autism, there was no clear-cut diagnosis upon which school could build. There were too many other variables still in play —the multiple physical impairments, the prematurity, and the seizures— to be able to separate the wheat from the chaff, as it were. It doesn’t make me much happier but it does make me wiser.
Today, I am grateful for the clarity of hindsight and the continuing trust I have in my own intuition about my child. The current picture of Nik has become somewhat clearer to everyone and I think we can move ahead with some more concrete, appropriate goals for the coming year. Specifically, they will all have some greater degree of concrete measurability built into them so that we can see progress (or lack) sooner and can adapt and build more consistently. That is a definite frustration I faced with this year’s IEP —but I didn’t know what I didn’t know.
I don’t know if this will include a placement in the autism classroom or leaving Nik in the integrated preschool class. There are pros and cons on each side. If only I could find the way to elicit Nik’s input on what he needs. Boy that would make me the “Autism Whisperer” wouldn’t it!
The teacher of the autism program, which is fairly new in our district, has already voiced some hesitations to me about Nik’s orthopedic and visual impairments; she’s never had a student like Nik and isn’t sure how to handle some of those issues. As jarring as it was to hear at first, I appreciated her honesty. The flip side to the autism program, though, is the structure and the emphasis on communication which is not as keenly reinforced in the preschool classroom. I don’t know enough about the autism program and the philosophy or teaching methodology to be able to make a thorough enough assessment of whether it’s a good fit for Nik. I have “heard” that the focus is on the TEACHH method and not ABA or Floortime/RDI. My initial reservation to this approach is an understanding that this methodology doesn’t really take into consideration “recoverability” or the possibility that Nik would, with appropriate supports, be able to learn to overcome —or at the least, work with —some of the skill deficits he currently has. I hope that I have misunderstood the premise behind TEACHH. If not, it sounds like an approach I cannot embrace for my child (nor should I be asked to do).
The other major stumbling block for me in considering whether Nik should be in the autism class has to do not so much with the program as with Nik’s ability to transition into it. The autism program is at the opposite end of the hall from the preschool class with which Nik has become not only familiar but very comfortable. I fear that taking away absolutely everything and everyone familiar to him all at once while remaining in the same building to see them all every day might be akin to taking a favorite toy, turning it on so he can hear the sounds and placing it where he can see it but cannot have it. A setup for a complete and utter coping failure of the greatest magnitude.
The preschool isn’t exactly an ideal fit either, though. Yes, Nik has made some great gains in some areas —most notably gross motor skills. However, he’s not made any progress toward eating, communication, overall ability to attend and focus, and he still doesn’t have anything even resembling a sensory diet in place. This, despite numerous conversations with the teacher and OT about it. (Lesson learned: if it isn’t in writing, it’s not happening!) I think the greatest problem in the preschool is that there is a reliance upon Nik’s ability or desire to learn from the modeling of his NT peers. Well, if Nik were just a garden-variety orthopedically impaired kid, sure that would make sense. Nik clearly needs 1:1 support full-time and that just doesn’t happen in the preschool. But, based on my conversation with the school case manager, that could change. I hope so.
Meanwhile, the things that are great about the current classroom placement include Nik’s teacher, Miss J. She adores Nik and totally “gets” him. She’s said to me so many times, “I know there’s a key to unlock him somehow and I’m going to keep trying to find it.” Her co-teacher, Miss D., I think would be very happy to not have Nik in the classroom; he is a lot of work and I don’t get that she likes to work that hard. (To which I say, “Tough luck for you, lady!”) Other pluses in the preschool are the exposure to more music —a tremendous motivator for Nik— and exposure to not only NT kids but other kids with disabilities, too. The staff, overall, is much more comfortable with the orthopedic aspects of Nik’s challenges. And Miss J. is trained to work with visually impaired children.
So, my gut says that Nik would be better off in this preschool with some significant changes or additions. Definitely a 1:1 paraprofessional. Specific sensory activities along with a more predictable schedule, a more focused oral-motor program, some sort of intensive communication support (possibly augmentative technology) to help Nik with self-expression, and a behavior-based program of some sort.
I know that it’s never easy to give feedback on someone else’s child whom you’ve never met, but I’d sure love feedback from any readers with information on TEACHH, or tips on how to successfully navigate our way toward a better IEP for Nik.
It can be hard to make these decisions when you think of it as one way or another way, final answer. Something that helps me take a step back and make a better decision is the knowledge that nothing is carved in stone.
We try things, they don’t work, we figure out how to fix it. In a perfect world, the IEP is a template based on what you know now. You can request a meeting anytime during the year—as you or Nik’s teachers gain more insight.
However it works out, keep his teacher close. It sounds stupid, but having the classroom teacher in your corner can make a tremendous difference when lobbying for services and support.
That said, trust yourself to make a wise decision. You know what’s best for Nik. Try to turn down the volume in your head so that you can listen to your heart.
Good luck.
Kristen makes a great point. Very very few decisions are irrevocable. It’s easier advice to give than to take, though.
Personally, I would recommend that you go with your gut. I think that an inclusion placement with an aide can work very well.
And, please, don’t beat yourself up over the IEP goals. We have some goals where we make quick progress, and a few that seem to hang around for years. We try to decide what is most important at any given time and focus energy there. No doubt Nik’s development will move along in fits and starts. Some things will happen so quickly you’ll be amazed, and others, well, you’ll wonder why it’s so hard.
You’ve been documenting a lot of other great progress on your blog, especially the beginnings of real interactions with you and with other kids. There’s more to Nik than the IEP.
Have a great weekend.
Sandy
Kristen, Sandy–thanks for the reminders that this is not carved instone AND to listen to my heart. My frustration ovr Nik’s goals stems more from the fact of our ignorance going into our first IEP meeting and **assuming** that “the experts” knew what goals were appropriate for our child. (Don’t ask me what durgs my husband I must have taken to cause THAT to make sense!LOL) The result was that Nik’s goals weren’t really set up in such a way that they could actually be measured in an objective way so we had to rely on lots of vague but nice sounding verbiage from the school staff.
Fortunately, we’ve learned a lot in the past school year and are better prepared for this IEP (yet to be scheduled). I think, too, we’ve also got some of the school staff acknowledging that they’ve not dealt with many kids quite like Nik. Now they are more willing to place credence in what we say. (To clarify, it’s not b/c Nik is so unique. Rather, the school district has only started teaching kids w/autism in the past few years where they used to get placed into another district. I guess Nik is one of the first with multiple disabilities? Yeah, it sucks being in the vanguard!)
Hi there. I’m sorry I don’t know much about TEACCH, but I think you are wise to consider the emotional, motivational and sensory impact of the choices you make for Nik. This is such an uncertain time and you have to go with your gut–no one has a better answer. I completely agree with Kristen: Miss J. is a huge asset–work with her.
I’ve always preferred the kind of structure, types of programs, and educational philosophy of ABA. Floortime and RDI were too “loose” for Charlie and not as readily transferable to the classroom. That said, here is the TEACCH website. This Wrightslaw article presents some of the distinctions between TEACCH and ABA—-which, like Floortime and RDI, continues to evolve. (If you Google TEACCH ABA you’ll find more comparisons.)
Regarding changes in classrooms: The transition to a new learning environment is inevitably rough but Charlie has ultimately done fine (but that’s Charlie). It always helps to make sure that there a transition plan in place with concrete ideas to help the child with anything new.
I find this site has some good (concrete—) suggestions for IEP preparation.
http://www.nichcy.org/parents.asp
I wrote some about it on this post.
After many years of thinking we could do it on our own, we started to bring an advocate (Charlie’s ABA consultant) to the meetings. It’s really a plus to have another person observing and listening, and not with all the emotion I always bring to the process.
I always tell myself, this is a long road, with many helping hands and voices along the way…..