Saturday, January 14, 2012

IEP Update


In a dream world, our neighborhood school that Christian will start Kindergarten in this coming September would have all of the little accommodations that we have grown used to at his current school. Small classes, built in audiology suite, excellent student/teacher ratio, built acoustically sound, and a lightspeed soundfield system built in every room sure would make next year's transition easier.  

In a nutshell, our I.E.P. meeting went well. In addition to our team of specialists, our county school system was well represented as well as representatives from the school and experts in curriculum. Our preferred Kindergarten teacher was even in attendance and we were able to have a great collaborative discussion about requested accommodations and strategies for Christian. The principal of the school also formally welcomed us into the community and was eager to have Christian as part of the Kindergarten class. 

Where things got sticky was when the discussion of an FM system came up. Our county school system has offered Christian the use of an FM during the school day and our family has decided to initially decline the offer of the system. Now I know that there are some CI and other hearing loss families reading this rolling their eyes and calling me crazy. Believe me, I have read all the research, and I know that it does do wonderful things for our children who wear Cochlear Implants. However, if there is one thing that I've learned in this journey is that I never can underestimate what my Christian can do. From the beginning, he's had us in awe. He was never *supposed* to do the things that he is doing now. I've also learned that you can't judge a kid with a hearing loss just by their audiogram on paper, rather you need to look at the kid as just that: A KID. Christian has worked since he was 16 months old to listen and speak using his Cochlear Implant. He has consistently utilized the programs and features on his processor that allow him and our family to accommodate MANY different listening scenarios. We've educated Christian under a model that helps him utilize his existing hearing with his Cochlear Implant and his hearing aid. There is no doubt in my mind that Christian is an EXCEPTIONAL CI user. Christian also happens to be an auditory learner...pretty amazing considering that he is also deaf. We requested that Christian start the school year off without an FM system and we will re-evaluate his progress and reassess the need for an FM system a couple weeks into the school year. My heart is telling me to give him a chance without it. I want him to adjust to a new school and new friends without the FM. Our family's philosophy is that we absolutely will use it if Christian needs it. We're just not convinced that just because SOME kids need it that he will as well. 

I am pretty sure that our county school system thought we were crazy. They told us that they have never had a family turn DOWN services (like the FM). I responded back that they never have had a student like Christian or a family like us. There was discussion about how it would be "easier" for the Kindergarten teacher to use an FM to ensure that Christian was getting everything. I quietly winced and  resisted the urge to remind everyone at the table that the I.E.P. was not about making the teacher's day easier, but for giving Christian the access he needs. Luckily, our team members from our current school did that for me.

The tricky thing about Christian is that he really doesn't NEED that much. Sure, preferential seating will benefit him. Pre-teaching new vocabulary concepts will help him too. There are some things we can do in his classroom to acoustically treat it as well. We requested to meet again at the end of this academic year to reassess our goals, and the request was granted. We requested to also meet 60 days into the next academic year, and that request was also granted. 

All in all, the meeting went well. We are lucky to have a great service provider, and our team from Christian's current school is top-notch. It's hard to believe that in just 7 months he'll be walking up to that school with his neighborhood friends to start a new chapter of his journey.





9 comments:

Anonymous said...

So your suggestion is to wait until he fails to get him accommodations...interesting approach.

Anonymous said...

Hi Tina,

I've been reading your blog for a couple of years but am commenting for the first time. I think you're doing the right thing - see how he does without the FM, and if you need to reassess that issues, you can reassess it. It's great your school system is willing to work with you. My second-grade daughter has mild to moderate bilateral hearing loss. Thus far, she has done terrific in school without and FM and with minimal accommodations (preferential seating, good visual access to the teacher, sound absorption materials in the classroom). She's a straight A student and is in her school's gifted program. She wasn't diagnosed until she was in kindergarten.

Hope Christian does great in Kindergarten - I'm sure he will!

Rebecca

Christian and Lily's Mommy said...

To the Anonymous poster who suggested I was waiting for Christian to fail to get him accommodations---that is not what we are doing at all. We have made many arrangements for Christian for next year---preferential seating, itinerant services, private audiology, and education of the team at his new school. An FM system is just one component. Not all children with Cochlear Implants NEED FM systems. Rather than slapping it on at the start of Kindergarten and never knowing how he does, we want to get a baseline and know how he does without it. Accommodations for children with hearing loss are not one size fits all, and as Christian's parent I would never, and have never let him fail. Please save your judgements.

JMF said...

Hi Tina -

I would also like to respond to a few points that were made here. First of all, I absolutely did not interpret this blog post as an endorsement for allowing Christian to falter before you help him. It seems to me that you are trying very hard to allow Christian to get to know himself a bit better as he goes through his journey with his hearing loss. Not only do his family and support system (ie - school personnel, medical professionals, etc.) need to know what he CAN do, but it is integral for Christian to understand his own abilities for himself.

As someone who has taught for many years in the school system where Christian will be attending Kindergarten, I can say with certainty that what you described as your first IEP experience with his new school was an incredibly positive step forward, and your are fine to be cautiously optimistic that the school will put into action the plan for the FM system ASAP if it is determined later that Christian needs it.

Further, as someone with a disability myself - I am a paraplegic who has a spinal-cord injury that I sustained when I was grade-school-aged, reading this particular post reminds me of one experience I had when I was injured. Many people (even my closest friends) assumed that I would want or need to use a power wheelchair, right off the bat. If I had a dime for every time I had heard from very well-intentioned family and friends, "Why don't you just get it? Life would be so much easier for you," I would be a very rich girl right now!

But the fact is, I DIDN'T NEED IT. Sure, the time I spent in rehab strengthening my arms, learning to do things like assemble and disassemble my wheelchair to put it into my car for myself, push up hills, and even ride on escalators (yes, they teach us wheelers to do that in rehab!) was challenging, but in the long run, it made me into a very capable person who was much better equipped to navigate the real world. It also helped me heal emotionally from my loss, in that I was able to see myself as lucky in a way - I still had the use of my arms, and they could help me get where I wanted/needed to go.

If my family and I had listened to those other well-intended friends and automatically jumped to the conclusion that I needed a power wheelchair, I never would have known what I was truly capable of. I never would have been able to ride in a regular taxi cab. Taking an airplane, going places in friends' cars, or even visiting certain less-accessible locales would have been huge obstacles. I would have run into challenges like what to do when if my chair's battery died while I was out and about, or if a motor part broke and I was stuck at home instead of heading to work or school. And let's not forget the importance of cardiovascular exercise - that would have basically been nonexistent for me, which would have had major ramifications on my health.

In short, the technology that was meant to make my life easier would have been more disabling for me. I can't tell you how grateful I am that no one, especially my parents, forced me to rely on a piece of equipment that I didn't really need.

This is not to say that you are copping out if you ever decide that Christian needs a bit more support. Just like my own parents would have helped me get a power wheelchair if it ever came to that, I know that you will fight tooth-and-nail, as you ALWAYS have, for him to get everything that he NEEDS. But as someone who has been in a similar set of shoes as your fabulous little boy, I think that breathing deeply and taking this risk in waiting to see what he can do could end up being one of the best gifts you can give him.

I, for one, can't wait to see what Christian does next... :)

Anonymous said...

I just thought I would leave a comment to let you how much of a nice read this actually was.

Shelly K said...

Hi, just reading your blog and commenting for the first time! :)
My son is in first grade public school. He is profoundly deaf and received his first CI at 10 months and second at 3 1/2 yrs of age.
He used a sound field FM for the first few weeks of kindergarten. Classroom was good accoustically, 17 students. After a time, he told the teacher he didn't need the FM and went the rest of the year doing great without it. (Has always been an excellent reporter!)
Started 1st grade this year and didn't use the FM. He seemed to be missing alot and we discussed using the FM in October but weren't sure if it would really help. Finally, after he seemed to really be missing many of the directions and having to ask for repeats much of the time, we started using the FM in December. It has greatly improved him academically! Teacher says he is so much more focused and follows directions so well on his own.
I think you are doing great in choosing not to use the FM initially. Who knows how Christian will respond. The great thing about having an IEP is that changes can be made immediately and easily. So no worries there.
I am not sure what the difference was between kindy and 1st grade this year was. I suspect it might be that course work is more difficult and there are many more steps and directions and that was where he fell behind when missing some of those directions. And 1st grade is where they make their greatest strides in reading so hearing as perfectly as possible is essential. Sam is at grade level now in reading, even with his setbacks at the beginning of the year but who knows where he might have been?
Good luck to you! You are a great Mom and always on top of so I'm sure Christian will be successful!!

Shelly K said...

Hi, just reading your blog and commenting for the first time! :)
My son is in first grade public school. He is profoundly deaf and received his first CI at 10 months and second at 3 1/2 yrs of age.
He used a sound field FM for the first few weeks of kindergarten. Classroom was good accoustically, 17 students. After a time, he told the teacher he didn't need the FM and went the rest of the year doing great without it. (Has always been an excellent reporter!)
Started 1st grade this year and didn't use the FM. He seemed to be missing alot and we discussed using the FM in October but weren't sure if it would really help. Finally, after he seemed to really be missing many of the directions and having to ask for repeats much of the time, we started using the FM in December. It has greatly improved him academically! Teacher says he is so much more focused and follows directions so well on his own.
I think you are doing great in choosing not to use the FM initially. Who knows how Christian will respond. The great thing about having an IEP is that changes can be made immediately and easily. So no worries there.
I am not sure what the difference was between kindy and 1st grade this year was. I suspect it might be that course work is more difficult and there are many more steps and directions and that was where he fell behind when missing some of those directions. And 1st grade is where they make their greatest strides in reading so hearing as perfectly as possible is essential. Sam is at grade level now in reading, even with his setbacks at the beginning of the year but who knows where he might have been?
Good luck to you! You are a great Mom and always on top of so I'm sure Christian will be successful!!

Christian and Lily's Mommy said...

Thank you Shelly for your insight!

kwilinski37 said...

We take the same approach regarding FM systems and other modifications! My two boys (11 and 5) are bilaterally implanted and have never required an IEP. Really, the only modification that my 11 year old has needed is conversations about preferential seating (conversations that can be easily had with him and his teachers) and a few gym class "lessons" or lectures written out (because the teacher does some units which require listening in the gym to information about, say, heart health and things like that. He informed me last night that he and another student were the only kids, though, who were paying attention and heard the gym teacher's instruction yesterday... and avoided trouble!

It's important to use your parental wisdom to avoid the excess which can become part and parcel of viewing your child as "broken." Those of us who honestly see our child's abilities, who have believed that they could learn to listen and speak, and who have seen them exceed all audiologist and doctor's expectations... can be confident that our children will do well as long as we vigilantly keep aware of how they are doing and what they need. I have received a lot of criticism over the years (ironically, from parents of kids with CIs as well as deaf adults) who do not understand how well my son has scored both in quiet and in noise. They don't know how he is in the top of his class in Iowa testing. They don't understand how he interacts in class, and how well he can hear the kids behind him as well!

It's common for "professionals" to do what they have always done, and to make assumptions. However, you know your child best, and I think you should be confident that you will know what he needs before anyone else! It's not about the SCHOOL adjusting the plan, it's about you-- the parent-- deciding what works best for him. My 5 year old is reading great, and he never had an FM system in preschool, given the fact that we place great importance on learning to listen and build neural pathways to the brain. Amplifying a child in the early childhood years may cause them to hear the words, but create a necessity and crutch that they would otherwise not need, if they had been encouraged to listen like the other children. Sure, if there was no other way to hear-- if we didn't have the ability to implant and begin AVT in infancy-- then, perhaps, we would have an FM or other modifications.

I just wanted to back you up regarding your parental choices, and let you know that you are not alone. There are not many of us out there, but I can promise you that we are seeing excellent results from this course of action.