Thursday, January 24, 2008

The Meeting

I really want to thank everyone for their advice before I went into this meeting.

There were 6 at the meeting, his teacher, me, psychologist, (smd classroom teacher who has been observing K.C.) mediator and our division of developmental disabilities case manger (long term care).

1. K.C. has regressed in nearly every I.E.P. goal that we created for him as a team.

2. K.C.'s self injurious behaviors are becoming so frequent that his teacher "only has so many teaching hours in a day to teach and his behaviors are going longer and he is apparently "lasting longer than the teacher has minutes to teach in a day."

3. He needs more help than they can provide him in his current program.

4. The program they want him in is for Severely Mentally Disabled students or "lowest functioning."

I have been crying all day long. Everyone at the meeting seemed to agree with each other that this program would be best for K.C. I didn't agree, in fact, I signed nothing, only the form that everyone signs to show who is in attendance.

I need time to think. K.C. is not mentally disabled he's Autistic, I repeated that over and over. He's almost 7 years old, he's just a little boy for Gods sake. I keep questioning myself, does Autism mean he's mentally retarded? I hope I don't sound totally ignorant. On his I.E.P. forms they have him listed as Autistic/Mentally Retarded.

I am not doing a very good job of advocating for K.C. Everything is becoming so overwhelming. I just need time to think it through. If I leave K.C. in his current program I am afraid he'll learn nothing. I think they have gave up on him and want him in the smd program.

Tomorrow I am going to visit this classroom. I am going to be totally honest, I am scared. Scared for K.C. In the back of my mind I had always hoped K.C. would be able to lead a good life as long as we did everything in our power to help him. I want him to have a good life, be happy, healthy. Now I am thinking maybe I have been trying to put the thought that yes, maybe K.C. will be very handicapped for the rest of his life. I may never hold a conversation with him, when I think of these things I feel like I am giving in to that life for K.C. so I put them in the back of my mind and try to think as positive as possible. Have I been lying to myself all along? Has everyone else seen K.C. differently all along, different that I see him? I see hope, he's smart, he loves us and I see him learning. Maybe not what the school expects, but I see him learning in life skills. He is making efforts to try to put a sock on his foot, he will go to the bathroom sink and if I stand behind him and tell him, "first we wash hands before we eat." He will put his hands under the water! I can then tell him, "dry hands", he will then walk to the towel and dry his hands! He really is doing so many wonderful things at home, many things. In fact his s.i.b.s. haven't been happening at home as much as his teacher says they happen at school.

I was so upset at the meeting I didn't even say half of the things I wanted to say. I felt like I was going to cry every time I had to speak.

24 comments:

Niksmom said...

Oh, Sweetie! First of all, take a deep slow breath. You are not alone as you go through this...you have all of us out here. Second, trust what you see at home. Don't let school railroad you into a placement you beleive in your gut is false and not supportive of K.C.

Now is the time to officially request the following things (in writing) if you have not already done so: an independent educational evaluation AND a complete sensory evaluation. When you write the letter of request, word it that it is a "request for and consent to" so they don't drag their heels and say the never got the consent to do those things.

I don't know jack about it "officially" but I'd be willing to bet from the way you have described the differences between home and school that school is too overwhelming to K.C. right now.

His SIB's and other "disruptive" behaviors are communications. What kind of support is he getting in terms of language/communication? Has anyone talked to you about trying to find an augmentative communication system (whether PECS or an electronic device of any sort) for him? Ask to see all copies of treatment notes for his therapies. It may be that he isn't getting the right supporta to be able to communicate his needs (like if he needs a break) and instead he acts out.

Contact the parent training and information center for your area and ask them for some guidance about your rights, about evaluations, about finding an advocate to help you navigate all this.
http://www.tea.state.tx.us/special.ed/explansaf/ptic.html
OR http://www.partnerstx.org/

Also, contact your pediatrician for some guidance/resources and your local Autism Society of America Chapter. (http://209.200.89.252/search_site/chapter_map.cfm)

Keep breathing and keep reaching out!
xxxxxoooooxxxxxooooo

Ange said...

OK, 1st things 1st. If I could reach across and hug you, I would hug you and let you cry.

2nd thing, hug that boy of yours and remember that he is the same exact boy he was before that meeting. You see the real deal. You see him, every hope and every possibility.

The advocate in me is screaming, absolutely screaming. They set you up. And they knew what they were doing. Regression in IEP goals doesn't mean he isn't capable, it means the system is failing him. They should never suggest a change of program without data. Nor should it be a done decision before you have been given the opportunity to provide input. Regression data isn't enough.There is more to be done then just regression data. Evaluations, investigation into other methods.

I am so so sorry you have to deal with this. I know what it feels like to doubt my own opinions and beliefs because the school is so convincing and manipulating. It really really hurts. And damages your instinct and your will to fight (which is their intention).

I can't offer any other advice right now because I am hurting right along with you, for you. Give yourself some time to process and I bet in a few days, you'll have enough comments to get you going on a plan of action. For now though, hug your boys. And take a deep deep breath.

Penny L. Richards said...

Please know that you're not alone in feeling confused and upset after an IEP. In time, the right next step for KC will become clearer--but until then, it's all work, worry, and wait. Hugs for the hard days. You love your kid, your instincts are sound, and you'll figure something out.

Mom without a manual said...

I don't really know what to say. Take some time and let it all sink in. But of course, do not sign on to anything you don't feel comfortable with! Go see the room, try to keep an open mind.

But you also have to stick to your guns. You know KC best. You know what he is capable of. And you are the one to make sure others don't give up on him. If you don't feel like this new classroom is the right fit...than it isn't.

Sure he might not be meeting his goals and he might be backsliding. But that just might be a statement about the staff working with him rather than his aptitude. Perhaps he isn't in the right place right now...but that does not mean that the SMD placement is the correct choice.

DO NOT DOUBT THAT YOU ARE A GREAT ADVOCATE! You just have to keep advocating! I am sorry for this stress. Try not to doubt yourself and focus on the wonderful things he can do.

Hang tough! I am sending hugs!

David McDonald said...

I just came home from an ISP meeting. This is the adult equivalent of the "IEP" meeting you just came from. Our kid who is autistic is doing great! When he was six, they said that he would never talk and they were still saying it when he was 16. He had “s.i.b.s.” then, too, but hasn’t shown any in over 10 years.

We persisted and insisted that he should learn to read and verbal language would come. We were told that our expectations were unreasonable, but sure enough, with the RIGHT teachers, he learned to read, spell, and speak. He is 25 years old now. He’s attending college with a goal of using his talent with numbers to work at a bank. They had cut him off from speech/language services when he left the school system, but he is now pursuing more speech/language instruction because he wants to increase his ability to speak more clearly.

Now, I don't know anything firsthand about your child's challenges, but I do know that you know him better than any of the "experts." Just so you know, the label “mental retardation” is based on an IQ score from a standardized assessment that was never designed to tell anything about what a person is capable of learning. It's a point in time record of where a person is at the time of the test, and is designed to identify the areas in which extra learning can occur with the right supports. The inventor of the test, Binet, cautioned that an "IQ" score was never meant as a primary, definitive, and permanent representation of the quality or potential of an individual. According to Binet, the scale was designed with a single purpose in mind; it was to serve as a guide for identifying students who could benefit from extra help in school. His assumption was that a lower IQ indicated the need for more teaching, not an inability to learn. It was not intended to be used as “a general device for ranking all pupils according to mental worth.” Please read the history of this label based on the IQ index at: http://iq-test.learninginfo.org/iq01.htm

Also, I just need to tell you that people who are perceived as “mentally retarded” by the broader culture do indeed have good lives, meaningful goals and rich conversations with the people they care about in many different ways. Also, remember “expert” is just a label based on another arbitrary point in time assessment, and another perception held by some (and not always by others). You can choose to accept this label as a permanent condition for them or not. Indeed, the “experts” may still have the capacity to learn something! Don’t let any of these people get you down. You and K.C just keep pushing. Magenta. http://dawgoregon.blogspot.com

gretchen said...

I wish I could hop on a plane and come right out there! I really do understand what you are feeling. I had a phone conversation with Henry's teacher last week that I have not blogged about. His behaviors are injurious to others, not to himself, but they are getting worse. I found myself fearing that he would be placed in a "behavior problem" type classroom instead of his classroom for autistic kids. I found myself doubting everything I have known and wanted for my son!

As Ange said, K.C. is the same boy he was before this meeting. Most of us have never met him, but we have more confidence in him than the school does! Argh!

You are one of the best moms I know- you are so strong and always have such a positive attitude- so patient with both your sons. Don't give up!!!

Julie Julie Bo Boolie said...

{{{{{{{{{HUGS}}}}}}}}}}

I really have no idea how hard this must be for you but I can see your love and courage shine through with every word. You ARE the best advocate for KC because you love him and actually TRY to understand him which is a LOT.

I know in my heart that you are doing what is best for your son.

HUGS HUGS HUGS

Casdok said...

You are doing a great job of advocating for K.C.
as a mother you need to go with your gut instinks as they are usualy right. You know him best.
I cant comment futher as you have different systems over there, and i see you have been given lots of advice.
It is overwhelming at times, but you will do what is best for your boy.
Hugs

Eileen (aka Mamaroo) said...

Tina, You ARE a great advocate. I know it is scary and the school people try to bully you and make you feel like they know better than you do, but we all know the truth. You know KC better than anyone. The things you wrote about that KC has recently accomplished are awesome and prove that he is so much more capable than anyone knows.

Take the time to observe the other class. Gather all the info and support you can. You can do this. He has his whole life ahead of him. So much more time to learn.

Sending you big hugs!!!

Sam I Am said...

Dang!!! I have been away from the blogosphere forever and just stopped by. I WISH I would have been keeping up with all that has been going on with KC. If I could jet off and help advocate for KC I would. I know you need a break. You are an amazing mom, with beautiful boys. Remember that they are just words. You know your child beyond those words. You are in my prayers and in my heart.

Melissa H said...

Ohhh Tina. :-( I am so upset for you. I'm so sorry that I'm just reading about all of this now. I have no advice for you beyond the fabulous words above. But, I will offer this: don't EVER forget Jeremiah 29:11. God means that for ALL of us, KC included. Don't let that school bully you into squashing KC's potential. You're a fighter and an amazing advocate for KC. I know it isn't easy and I will help pray you through it. Peace, dear friend. God is holding all of you in His hand.

Melissa H said...

I just went back and read this post again after my comment and I wanted to add this. You said:

2. K.C.'s self injurious behaviors are becoming so frequent that his teacher "only has so many teaching hours in a day to teach and his behaviors are going longer and he is apparently "lasting longer than the teacher has minutes to teach in a day."

3. He needs more help than they can provide him in his current program.


Well, guess what? Too damn bad for the teacher. I guess she should do some data collection and get another paraprofessional in her room! Sounds like KC simply needs more support in the class by way of another aide. Conor's class has six kids, 1 teacher and THREE aides! Why? Because the teacher knows what type of supports she needs in order to help all of her students, and his classroom has verbal and non-verbal kids, kids with s.i.b.s, kids with aggressive behaviors towards others and one eloper. Take a breath, Tina. Find hope and faith in the comments above, especially the one from David McDonald, and NEVER GIVE UP.

I love you, girl!!!

kristina said...

hang in, hang on.

Do you have an independent evaluation of KC---by someone who is not connected with the school? It would also be helpful if someone else could talk to the school about what KC is like at home. Sometimes nothing a parent can say will help, but someone who is an autism professional and not you can.

What did the school say about only quite suddenly informing you about all this? If they think he has regressed so much in his goals and that he has so many behaviors, this should be something that they have told you about all along.

I think you need an advocate---it would be good to have someone go with you to the next meeting! Can you contact the local autism society? Or a special ed parent society? It is something just to have someone else in the room with you.

But you should know, we're all there with you.

Special Needs Mama said...

Echoing what everyone else here has said. You know your son. You can do this. Get help and don't give in...

Lora said...

Oh my dear friend Tina, I am so sorry that I haven't read your blog in a few days, I had no idea that things were going so sour for you and that you were experiencing all this BS from the teaching staff at his school. I want you to know and feel confident that you are an awesome mother to your boys and that you are always doing what is best for them because ONLY you know what is best for them. I am so glad that you didn't sign the IEP that was brilliant! Stand up proud and don't let anyone bully you or try to intimidate you into doing something that you do not agree with. Several people have left you good advice and sound support here and you have tons of other people who care about you guys but don't always leave a comment but by golly if you need more support it will be there for you when you need it most. I love you guys dearly and I know that you will ultimately do what is best for K.C. and you will feel it in your heart when it is right and when you finally find the right placement and people to help him. Hang in there girl, you are way stronger than you believe yourself to be and we are here for you any time any day that you are in need. I am just a phone call or an e-mail away 24/7 and please don't ever feel that you are a bother.....what you are going through is legitimate and understandably exceptionally stressful and perhaps a bit overwhelming. Love,love,love and big big hugs to all of you!

LAA and Family said...

I had to deal with the autistic/mentally retarded thing in applying for a medicaid waiver for my son in Virginia (means that they waive the family's income in considering state assistance for my son's condition, autism). Too many details to go into here, but to make a long story short, we have to apply for the "Mental Retardation Waiver" vs the "Developmental Disabilities Waiver" because of his IQ score (hello, how does a child who has difficulty communicating score well on ANY test!??). It may seem like it's just words, but it's also a label that has more to go along with it..

I remember feeling overwhelmed in my son's IEP meetings too while he was in school. It's supposed to be a "team" effort, yet it seems to so often end up in a school vs. parent situation.

I like the advice NIKSMOM has given you. Step back, take a deep breath and see what you can do to get support. Try to take someone to your meetings who can help you. Get all the information you can from the school, like she said. It's a lot of work and requires a lot of follow up from you, but if you want your son in school and want it to work then this is what you'll need to do.

Have you ever heard of "From Emotions to Advocacy" by Pam and Pete Wright? This might be a good reference for you to get on the road to feeling more comfortable confronting the school. You can get more info on this book at www.wrightslaw.com There's lots of good info for advocacy on this site.

Good luck, you and KC are in my thoughts! Remember, this is all a step by step process.

Judith said...

If possible, run out and get a copy of "From Emotions to Advocacy". There's a lot of info in that book that will help you. It's very easy to read.

I agree with Krstina that it sounds like you need an outside evaluation. The school district has to pay for that ... don't let them convince you otherwise.

Don't second-guess yourself. No doubt your boy is incredibly bright. He's just needs educators that know how to reach him.

The book will help ... really ... it will.

kyra said...

oh my god, what a horrible meeting! it was an ambush! they ought to have informed you all along of what they regarded as KC's difficulty with his IEP goals and what's with the attitude that it's HIS fault that he's been struggling? they aren't meeting HIS needs. they need to figure out how to help him, how to support him and partner with YOU on the whole situation, not lay in wait and then spring this huge change on you.

shame on them.

i agree with the suggestions to get an advocate who can do research, support you, someone absolutely clear on your rights, on all the options for KC, and someone who can do the talking during the next meeting so you don't have to be on the spot. the pressure in those meetings is EXTREME, even in the best of circumstances.

i wish i could come over right now and help, make you some tea, give you a pillow for pounding or one for propping under your feet while i play with the kids. i'm so sorry about the upheaval but maybe it will lead you and KC to a situation that better suits him? TRULY suits him, where he can feel safe which is the bottom line condition for learning.

sending my best best thoughts.

redheadmomma said...

Tina,

1) This must be so hard for you. PLEASE know we're all rootin' for you over here, and please ask any question you can think of on your blog, we'll all put our heads together to help.

2) I think it's imperative that you get a much clearer picture of what exactly is going on. I send Noah's dad to observe because he's not as disruptive to Noah as I am. You can request an FBA (Functional behavioral analysis) to be done by an outside professional to see why these meltdowns are occurring. Just step back and sign nothing until you are satisfied. I'm sure they're having trouble, they don't try to change placement unless they're struggling, but here's the deal: if this is all a bit of a surprise to you, that's not okay.

3) This is so important: I try very hard to frame us & them as part of the same TEAM instead of us against them. If you can see yourself as an equal member of the team, you will have the confidence to go in and say, "Hm, this is all new to me, I'd like to further understand what's happening with KC during his day. Who can videotape his day for us to review? And I want to request that FBA by an outside behavioral specialist so we can all have a clear understanding of what is working well, and what is not working well. I'm being asked to make a decision based on insufficient documentation and evidence, and as his advocate, it is my job to make absolutely sure that we've left no stone unturned before we talk placement changes. So let's agree to the steps we need to take together. After that, we'll talk placement." If you keep feeling like it's us against them, keep reframing it for you and for them, again and again and again. "We are a team, we are a team, we are a team." Maybe I'm completely naive, but I've gotten great results that way.

4) I know how hard it is to really be facing some really awful feelings: Will he ever do x, y, and z? Your biggest job is to HOPE. I highly, highly suggest that you try to find a counselor or therapist who has experience with families of special needs kids. I bet that even a couple sessions will help you immensely.

5) Did you observe in KC's current class, or the lower functioning class? You should do both to see where he'd be the best fit.

6) It may be that the best fit for him is the lower functioning classroom. The most important thing is to try to get KC somewhere where he will THRIVE. Nothing else matters in my humble opinion.

7) YOU ARE NOT ALONE.

Keep us posted, let us know what's going on in your worried mama head - we're here for you. XO R

Donetta said...

Oh Sweet Lady How very trying these times are for you. It looks like you have received a lot of good advice.
I wish too that I could embrace you and kiss your brow. Sweet heart those meetings are so paralyzing. I too found myself unable to say all the things I needed to say. Good for you for not signing anything. Look into a developmental of a 7. He is developing so perhaps like my 7 yr old he is responding in some normal ways expressing it in his autistic way. At the library you can get a book on what to expect developmentally, well look at it see if maybe he is just being normal in some ways and not able to express it.

Niksmom said...

Tina, Just checking in to see how youa re doing today. BTW, I had a "brain lapse" and sent you a link for TX. Are you in AZ or TX? Sorry!

Sending you love and good thoughts.
xo, Niksmom AND Nik :-)

Melinda said...

Well I am late coming in on this one. I do hope you read this comment.

When Noah was in kindergarten and having lots of issues handling it.....the school also thought Noah should be placed in a "SPECIAL PROGRAM"......with similar initials to the one you have here.....I think they called it something different because at that time we lived in Colorado.

Anyway.....they wanted to remove him from regular school too because they basically said the same things to ME that you were told. They told me Noah was taking up TOO MUCH TIME from the teacher......she could not teach the other kids because she had too many things to deal with regarding Noah. On and on....the list grew. I was ADAMANT about him NOT going into some special program....because he was NOT mentally retarded at all and they were wanting to place him into a program for mentally retarded children or severely behaviorally challenged children...which at that time if I had placed Noah there and he was so big on echoing behaviors and speech....I was afraid he might end up mimicking BAD behavior instead of good. I was also very worried about how he would do academically!

Noah had to have an IQ test at school....he scored in the average range and superior on a couple of levels. He was definitely not mentally retarded. A lot of schools still think old-fashioned and assume strange behavior from our kids...no speech....etc......equals mental retardation.

Everyone has offered some great advice. First of all never forget YOU are your son's mouth and body and ears and eyes and everything he cannot do for himself right now.

DO NOT let the schools make you feel pressured into doing anything you do not feel comfortable doing.

DEMAND a one-on-one paraprofessional for your son.....so he has someone to ease the pressure off his teacher. Someone should be with your son ALL THE TIME during his school time so someone is there to offer him CONSTANT redirection and prompts...encouragement......feedback......etc.

It also helps if this person is EXPERIENCED with autistic children. You don't need a generalized babysitter at school right now. You need someone who knows what they are doing!

He should also have a behavioral plan drawn up...where he can have special things added to his daily routine to allow his coping skills to kick in...so he can handle his days at school easier and better. If this means he gets to have time to go swing on a swing for so long out of each day or just get up and move.....something he enjoys and calms him...they are to allow it within reason.

You should try all options in the school before ever enrolling him in a special program that sounds like it may not have HIS best interests at heart.

IF you really keep trying at this school and all measures fail....they are to offer you alternatives. If you do not desire this SMD program....they are to provide another alternative. If they cannot.....they have to PAY for your child to receive an education wherever YOU choose.

PLUS they have to show where your son is "qualified" to have to go to an SMD program. DO not let them just attach labels carelessly to him. Those labels can last a lifetime!

They have to prove he is mentally retarded if they are saying he is...a school is NOT a physician...and even an IQ test may not be a good indicator of mental retardation as our kids cannot always perform the test because of their quirks.

GO to your pediatrician and ask for an assessment.

Please always never give up and voice all your concerns to the school. Never do anything that makes you uncomfortable. AND if your son cannot yet quite handle school.....don't feel bad. It took Noah a few years before he finally was able to handle it. In fact I wondered if he was ever going to be able to handle it. But after a few years being homeschooled he tried it this year and so far is doing very well (and I really wondered if I ever would see this day)

If you must homeschool your son or have the school send someone to your home to do that for you....take advantage of that time and do it. You can then help prepare your son to handle a public school setting easier the next time round.

There are no easy answers and all of us and our kids require specific things some others may not require.

hang in there...listen to your gut and heart...you will do well!

JUST A MOM said...

TINA I AM LATE I AM SO SORRY I AM SO PROUD OF YOU I AM SO SUPRISED WITH WHAT THESE PEOPLE HAVE SAID..
I read all of David McDonald's comment and oh man K,C, is NOT MY child but I see sooooooooooo much hope there. YES these OTHER people see K,C, differently BECAUSE THEY DO NOT SEE HIS HEART WITH THEIR HEART!!!!! WOW no joke girl yu need an ear I am here search the internet and the state HAS TO PROVIDE YOU with care for him. They HAVE to give you what you/he needs. again I am sorry I am late.

kristi said...

I don't know if you have had a chance to read my blog lately but TC (my son) is in a mainstream classroom and is pulled out for special needs teaching throughout the day. His teacher (who supposedly has worked with kids with autism) wrote me a note on how TC was very Naughty.......she has no clue! Thankfully there is another lady at the school who understands. I say to do what you think is best for your son but don't let them bully you! You are his Mom and you know what is best for him. Oh, by the way, they did the IQ test on TC too and he scored in the mentally retarded range and I know that is not true! It bothered me for about 30 seconds and I said, "that is nothing but a number, I know my child." Prayers are going up for you and your boys!