I thought it went okay.
Then again I woke WAY to early. And couldn't toss n' turn back to sleep. Because all this mess was preventing me. So maybe I'm wrong?
I was asked if I'm ready for this? Trevy going off to school.
I was getting there. Until full days were mentioned. Seems the kids with more intensive therapy needs get the full-day treatment plan.
I am not ready for full days.
Aside from all the other reasons...my home-school mommy guilt would eat me alive. I've wrestled that one now for months. How can I home educate the big kids. And not the baby. The reality is...I enjoy the priveledge of homeschooling Toby and Bristel because I can. I have the ability. And energy. And in a way...it helps me deal with the guilt associated with how much I have to invest in Trevy's care. I suppose in a way I hope it fills that hole in their little hearts. And that someday. When they're all grown up. With munchkins of their own (because it's not until you have munchkins of your own that your eyes are really able to see some of these things). They'll look back and realize that at least a portion of our choice to keep them home (for
now) was made out of love.
That was a rabbit trail. That I may well yet delete.
Anyway...
The Trevy reality is that his needs are greater than what I have to offer. At this point in his life. Whether or not I am ready for Trevy to go to school is beside the point. Trevy is ready for school. The question now is...are they ready for him?!
I think what's weighing so heavily on me is how to translate all of this information about Trevy. Some of which isn't read in his very large file. Some of it is felt. And certainly the majority of it is misunderstood.
I have never really figured out how to bridge that gap.
Yes. He needs intensive therapy.
But no I don't think that means he needs to be in a self-contained class.
His little brain is free now. Free to learn. And absorb. And re-wire. And I want to redeem every single moment! I am convinced that an integrated (a classroom with both typical or "role model" and special needs children) setting is the best choice for him right now. I think being around peers that he can imitate IS therapy.
Three months ago? I was much less convinced of the importance of peers. Because, frankly, Trevy didn't really notice them.
But radical things happen. When radical rescue measures are taken.
The other piece of the Trevy placement puzzle that is weighing on me is his safety.
It never ever crossed my mind that he would not have a one on one aide. To me it was just a given. Seeing how I can't cook dinner without him strapped in the high chair. Or else he'll have chewed his way half through the closest electrical cord. Which by the way...would explain why I don't cook dinner very often these days. And I'm just picking on dinner. Truth is...I can't do anything without having one eye on Boo Boo Head Boy. Which is why we often run out of undies. Among other things.
Trevor needs constant supervision.
He cannot do stairs alone. He cannot self feed safely. Yes, he is capable of putting food into his mouth with his fingers (not utensils). No, he is unable to stop shoving when his cheeks have puffed to capacity. Choking = not safe. He cannot sit through more than 5 minutes of a TV show. And he doesn't even sit for that. He stands. Nose to nose with Elmo. For 4 point 59 seconds. Or less. More often less. And there are more examples I could think of if I'd had my coffee already. But Jonathan makes the coffee. And he's smartly still snoozing.
To me (seizure mommy humor) it was a no-brainer. He needs an aide.
But I was told that aides are not typically provided. Somehow I'm thinking that Trevy may very well be the most A typical kiddo in his class. I'm thinking he could possibly be the exception this year. Unless there's another little half brained kiddo running around here that I haven't met yet?
Which I expressed several times over. While also sharing that my positively number one concern is that he not just get any aide. But that it must be an aide capable of recognizing The Seizure Monster dressed like the one in this video clip. (editor's note: the link is now corrected to view Trevy's Infantile Spasms relapse) It takes special eyes. Someone who understands that every seizure is not a grand mal seizure. While also knowing that it could be. And someone who understands how imperative it is to catch it immediately.
It struck me in the wee hours of the morning. What a wonderful job the Epilepsy Foundation has done of removing the stigma associated with seizure disorders. Seriously. You say seizure...and people don't miss a beat. You say 100s of med resistant seizures daily...and they blink and nod like they hear it all the time.
In Trevy's case...I think a stigma (which to me means some sense of urgency) would help. We are not dealing with garden variety epilepsy here.
We are dealing with a kid who...up until 3 months ago...had more seizures in a day than there are seconds. A kid who had radical brain surgery to control them. A kid who is still at risk. Not just of seizures. But of refractory seizures.
Listen...
I have not come this far to toss it to the wind!
I would gladly trade extra therapy for a set of eyes I trust on him at all times! I don't think I should have to trade. But I would. With parameters.
In my mind there are four qualified people.
Me.
Jonathan.
Grams.
And Miss. CNA. Who has worked with Trevy for almost a year now. And knows his seizures almost to the level of myself. Who has in the past...seen pictures snapped mid cluster and posted online...and emailed to ask if he was seizing.
Miss. CNA makes the most sense. Unless Grams is looking for work?
18 comments:
I don't know HOW he wouldn't qualify for an aide. Approach it from a saftey (liability) standpoint. Liability means lawsuit, something no pre-school/school can aford. Another thought would be to involve a TBI specialist. To my understanding, a hemi qualifies as a TBI. This might help ensure an aide also.
I am a huge propronent for integrated classrooms. It made a HUGE differencr for Connor to see proper modeling. I was talking to his extended day K teacher and she said, that in her class (which is a group of kids from all the elementary schools) Connor watches over and "cares" for all his Craig school friends. She said HE'S the leader! This, from my Asperger's kid. I about dropped on the floor! I truly feel his two years in the integrated classroom played a huge role in getting him to this point.
You make a really great point, Jen. I have no clue what in the world to classify him as? Is there even a classification? I emailed our Dr. Neuro to get her thoughts...
Will do the same with Dr. Rockstar too...
...danielle
i too believe that "role model" students play a very important part! every year (or more often), that IEP comes up & we have 2 decide to increase/decrease his "mainstreamed" classroom time...it's always a tough decision - a guessing game really!
i hope u're able to work out a 1on1 aide for Trevy - like Jen, i can't imagine that he wouldn't qualify for one!
I hate feeling like I'm always the one who has to decide. To explain. To foster understanding. Ugh. I'm tired. Mrs. Speech told me this morning that it's like we haven't even really had time to decompress from the surgery...and boom...we're back in the game! :) Anyway...
I'm confident we'll be able to work a good plan out. I'm confident that the people involved are in this line of work because they care.
I'm just tired. I should probably put out a craigslist add for someone to wade this junk for me!
...danielle
Ask Erin, she's got a listserve that supposedly helps you find advocates in your area. At least I think she does!
Here is a link to our school system special education handbook. See if you can get something similar for your district.
http://www.niskayunaschools.org/district/SpecialEd/SSS%20Plan%202008-2010.pdf
Here is some info on our classifications. Both Austin and Connor are considered Other Health Impaired. I'm not sure if you can be classified into more than one category.
Autism:a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a student’s educational performance. Other characteristics often associated with autism include engagement in repetitive activities, resistance to environmental change or change in daily routines, and unusual responses to sensory stimuli.
Deafness
Deaf-Blindness
Emotional Disturbance
Hearing Impaired
Learning Disability: a disorder in one or more of the basic psychological process involved in understanding or using language, spoken or written, which manifests itself in an imperfect ability to listen, think, speak, read, write, spell or do in mathematical calculations. The term does not include learning problems that are the result of mental retardation, emotional disturbance or environmental, cultural or economic disadvantage.
Mental Retardation: significantly sub-average general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a student’s performance.
Multiple Disabilities: means concomitant impairments the combination of which cause educational needs that cannot be accommodated in a special education class solely for one of the impairments, e.g. mental retardation-blindness, mental retardation-orthopedic impairment.
Orthopedic Impairment: a severe orthopedic impairment that adversely affects a student’s educational performance, e.g. clubfoot, polio, cerebral palsy.
Other Health Impairment: means having limited strength, vitality or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that is due to chronic or acute health problems, e.g. heart condition, tuberculosis, attention deficit disorder.
Speech or Language Impairment: means a communication disorder, such as stuttering, impaired articulation, a language impairment or voice impairment that adversely affects a student’s educational performance.
Traumatic Brain Injury: mean an acquired injury to the brain caused by an external physical force or by certain medical conditions such as stroke or a brain tumor with resulting impairments that adversely affect a student’s educational performance.
Visual Impairment
I only added definitions for those that might work. Sorry it's so long, I guess I should have just emailed it!
Although Marissa has not had as many issues as Trevy ever has, she has had to receive OT and Speech since age 4. She started Pre-K not talking a lick. And I mean nothing. She pointed, dragged us, or whined until she got what she wanted. When she started Kindergarten, they put her into an integrated classroom and she really took off. She, like Jen's Conner, became the leader and took care of her classmates. She even began to pick up on some of the sign language they used for another child in her class.
She still receives speech and the occasional visit from OT, but she has come a LONG way since she was 4. I think being in that integrated classroom actually helped her adjust better when her sisters were born also.
I pray that you are able to see the school see that Trevy needs an Aide to keep an eye on him. As Jen said, if it comes down to it, use that liability card. We all know you will do what you have to do to keep Trevy safe and get him the help he needs to help him catch up.
Good luck sweetie.
Danielle,
My hubby is just like yours...sound asleep the night before a huge day for the little one and I am up and freaking out about what to say, what to ask, and what to take and so on.
I also think it is shocking to hear that Trevy's doesn't qualify somehow for an aide. You know him best, and know what he needs, and what works best, and what he needs help with. Don't let go of that...shout it out loud if you have to.
I know they know kids too, but that is when you have to remind him that they don't know Your kid the way You do....you'd think they could at least meet you half way.
Do you know if there is another school that Trevy can go to, or if this no aide thing is pretty much standard?
It is so tough to trust our babies with someone else...trained or not, it is hard to do. You want them to know every little expression, every reaction, every move that they make. They need to have that eagle eye that we have and just know every little thing, and most importantly, you want them to love your little one as much as you do, and understand how precious they are, and how brave and amazing they are.
Wow, that was a lot!..sorry :)
Oh, no worries about Bristel and Toby understanding why you have done everything you have for them and Trevy....they are wonderful little kids who make stuffed animal parades for their little brother :) They love him and you guys so much! Yes, you are right..their eyes will open so much wider when they have their own little ones, and so will their hearts.
Sending you big hugs and the praying God will help you make the Big decisions, and make them so clear to you that you won't have to think about them :)
The problem in the public school system is money. Most likely the district cannot afford to provide one-on-one aides as needed (without cutting money elsewhere). It is very frustrating for both parents and teachers, but it is unfortunately the way it is. Keep pushing for the one-on-one aide. Parents have more power than they realize. Just don't back down. He definitely fits the bill for one-on-one aide, and that will lead to more social interaction which is very important for Trevor.
Jenny-kins...sometimes you make me laugh! ;)
Adesta and Jody...you two made me cry!
And lastly...Anonymous...
I appreciate your input. Especially as it seems you have experience on the subject. Lord knows, I don't. And can use all that is offered! I hate the thought of being the "squeaky wheel mom". Ugh. I hate that. Hate it! But my heart just won't let me settle for less than what I know to be best for Trevy. Although...
that said...I AM sympathetic to the budget issues. VERY. We have always lived on a tight budget ourselves. And had to make hard choices regarding our budget when we played missionary in Tanzania. Which is why I try VERY hard to be balanced and to make compromises. I'm not asking for more services all the time or more coverage for various therapies or equipment. Especially as I look around and see SO many people trying to soak every single drop of every single thing they can get from the system. It is a huge burden I carry to make sure what I'm asking for is fair and needed. So that next year...another Trevy's mommy will have access to the tools I have. My greatest fear is that the resources will be drained dry...by those who don't really need them. All that to say...I am sympathetic. But. Of course there's a but! ;) And not that I think you disagree...you just opened a door for my fingers to vent out some thoughts! Thank you! Anyway...back to my but...
I don't think I'm being unreasonable. I think my CNA may actually cost less for them to contract than a one:one (unionized)aide. If they are successful in convincing my insurance to cover additional CNA hours (we currently have 8 a week) I will gladly use them for Trevy's schooling! Just so long as I can keep my 3 on Sunday. Lastly...I like to think the freebie funding (because I homeschool) being given to the public school for Toby (and next year Bri)is being used to help meet his brother's needs! But I'm naive like that. :)
Anyway...
I know it will all work out. It always does. It's just the living from here to there that totally stresses me out!
...danielle
danielle,
sorry a couple of us made you cry...usually they are good cries. you know...cries that help you release all the feelings you have and those that you don't really know you are feeling until they come spilling out.
being the squeaky wheel momma is not something we aspire to becoming, but whatever it takes you know...to a certain degree of course :) like you said, you will not only be helping out Trevy, but for those to follow. an added bonus is you are teaching your kids that they deserve what is best for them and you will stand up for that.
i forgot to mention last time...Kylie likes to "chipmunk" her food too...just shoves it all in til her cheeks are puffed up and can barely chew it all, so yeah, always on watch to clean out the mouth before she begins to gag or choke...silly babies
Bigger Hugs this time ;)
jody
TBI is defined by your state (for educational purposes). In PA, Ryan qualifies for TBI. The difference between states usually comes down to external vs internal force. In Jen's description for NY, it sounds like surgery would not qualify since it limits TBI to an external force. Some schools don't follow the letter of the law and decide TBI is the best category even though their state definition is not a match.
You can try contacting your local ARC to see if they provide advocates. Our ARC used to have free advocates, but due to budget cuts, they were eliminated. They may be able to provide names of advocates even if they have no one on staff.
I highly recommend finding a local autism support group. These people know how to get services, the best schools in the area, the best providers, best advocates, etc. I learned so much from our local group and I have a great program thanks to all the information I learned from the group. You can often learn about your school politics too. (Some schools have no problem lying to parents or denying services that are clearly needed.)
Keep fighting for the aide. Right now, Trevy needs to focus on socialization which he can get best in a mainstream classroom. A mainstream classroom will also increase the need for an aide. When academics become more important, the specialized classroom may be the way to go. At that point, if the classroom is small enough, you may be able to eliminate the aide. We eliminated Ryan's aide this year because he's in a classroom with 4 kids and 2-3 adults.
BTW, some school districts do read blogs, so if you have thoughts you don't want to share, keep it off the blog:-)
Erin
Much wisdom already. I'll try not to repeat.
Unless there are changes in the last 5 years or regs particular to where you live, children can have more than one special education label. (I have lots of spec ed experience but don't blog about it. Much.)
I read a post from a frantic and anxious mother in anticipation of special preschool. You do not have to send him on the clock of his 3rd birthday. You can ask for half days, 3 days a week. You can ask for a more gradual transition. That may reassure you of his safety, allows you to assess his placement, and for them to see the extent of his needs.
Hope you have had your coffee by the time you read this. You have your work cut-out for you. (But I believe you can do this.)
However, my most sincere and best advice is to avoid an antagonistic or assertive/aggressive attitude toward the school personnel. Will.get.you.nowhere.fast and set yourself up for perpetual battle.
The BEST parent tactic for the IEP (and transition) meetings I know is to take a framed photo of your child and set it on the table during the meeting. And bring cookies or something delicious. (Honey over vinegar)
They cannot tell you that there is not enough money for an aide. Can.not. The reasoning that comes out of their mouths must be because it will be best for Trevy.
School districts do not have an endless supply of money and you are a good citizen to realize the impact of decisions made for even one child. But a small village gets to decide and there many influences on each one of them.
Here's one of my few posts on special education and specifically on IEP meetings:
http://www.therextras.com/therextras/2008/11/committee-work.html
Barbara
I agree with Barbara, bring a picture!
Also, Connor did a slow transition into the pre-school until I was comfortable. He did 3 days a week for about 3 months, then went 5 days.
Rather than a picture...I'm bringing the real deal.
:)
We live in a State that has worked very hard to nurture the SN community. Which may explain why it is encouraged to bring the little one with for the meeting?
Someone from the school will also be observing him at Groden (his SN school/playgroup) which I think will be a tremendous benefit to all parties.
Thanks for all the input...
Obviously this is a big talking point!
...d
I would say keep pushing for the aide. As a matter of safety, should be enough. If not, push the certification issue.
We are starting our journey into transition. First we are getting her certification changed to SXI (which I believe is the most severe or at least close to it), multiple impairments.
Once her certification is changed, we can work on her transition which is going to be extra interesting for us. Her birthday is in May, so we will finish the school year in the EI program. We qualified last summer for Extended School Year (we should qualify for that again this year). But before we even get to the point of getting the therapists out to our house, we are moving.
So new school, new teachers. Our hope is to get Emma placed, not in the local school, but in a center based school for kids with severe impairment. First we have to go to the school and they have to decide that they don't have the resources for Emma. And then we get to move on to the special school, which I hear is AMAZING.
I'm already trying to get my foot in the door, hoping to make it as easy as possible. As soon as the recertification is done, I'm taking the IEP/IFSP to the new school. I want them to meet Emma and the rest of us so by the time we actually start, they understand that Emma may be 3, but it's more like she's 8 months.
But I can't wait till both kids are in school for hours! Though I'm not sure what I'm going to do with the time. Jon says I should fill it with another baby.
I don't have much to offer other than what's already been said, but I agree with whoever said you have more power than most people realize. KC is the only kid in his class who gets a bus because "they don't provide busses". I simply told them that KC needs a bus as I am a full time student. They gave him a bus. A great one, that met my approval, at that. Private bus company, same driver every day, car seat, only kid riding, etc.
I know that this transition is so tough. I have NO doubt that you will get Trevor what he needs. You have climbed higher mountains than this. I think that in the end, school is great once you get past this part :)
Good Luck!
Karen
I too hate being a squeaky wheel. We are not going the public school route just yet, so I have no advice for you there. But I did squeak a little this week with Julia's school and I'm so glad I did...and today she had her best day yet. So don't fear the squeaking! It's uncomfortable for sure but oh so worth it.
Danielle...When we started "in the business" 25 years ago, the world was very different....There were only the BASICS offered, even in a special needs program....Colby would have not been appropriate for public school anyway, as his disabilities were so severe...And this was even WAY before seizures!
You already do and will continue to make the right decisions for Trevor, now and throughout his life...You have had to face so many of them ALREADY in his short life...You have had alot of practice....
I don't envy this new journey...But I DO have tremendous faith in you that your Trevy will ultimately succeed in each and every area....Despite the challenges...Have confidence in what your heart, soul and mind tell you!
Cyndi
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