Overwhelmed and freaking out at IEP process

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Has anyone felt like just dropping out of the IEP process? Kind of like taking your ball and going home?

I am an aspie mom with two sons diagnosed with pdd-nos. My 5 year old started a full-day program at 3, getting ST, OT, APE and a behavioral trainer at home for 1 year. Now that he is about to enter K, they are yanking almost everything. They are recommending 1/2 day K for him? Also 2 days per week for 5 weeks for summer school (i.e. Monday and Wednesday).

My 3 year old, despite his PDD-NOS diagnosis, only got a half day program. He gets ST and APE.

We are so fortunate that my kids can "hold it together" during school. I've seen them in school and they look great. I barely recognize them. Then they come home, and EXPLODE. The behaviors come out everywhere, the sensory seeking, stimming, screaming, meltdowns. I have tried explaining this so many times, but either the teachers don't believe me (and my husband) or my kids just aren't "affected enough" at school to warrant more services.

We are willing to pay the difference to keep my son in FT school for K. It's more than we can afford. But I am not a fighter. I dread getting an advocate (or a lawyer!) and fighting the system. As an aspie myself, I never expected this, didn't find out about my own issues until 2 years ago, and frankly, this is killing me. I'm maxed out on all kinds of anxiety meds and I'm still having major meltdowns. My husband doesn't know what to do, IMO he's an aspie too and sticks his head in the sand. Sometimes I wonder what we are even fighting for. It's making mom and dad CRAZY and for what???? I'm not even sure any of the therapies are helping them.

Did anyone else ever just drop out of fighting for more? I mean we will still have IEP's in place, and part time services through the school. I just don't think I have the warrior thing in me, it is making me severely depressed and anxious and I feel like my kids are suffering more because I am a basket case worrying about this than for any loss of services.

I have a call in to the local Autism resource center for a consult with an advocate, but even that makes me just sick to think about doing it. Would I be a horrible parent if I just took what they offered us and got our "therapies" through the other things we do like lessons, music therapy, sports, family outings and almost constant 1:1 time with both mom and dad at home?

I'm facing a similar situation as my son enters K next year. Last year he had double the services he has now and I'm pretty sure they're looking at cutting some (though adding speech therapy for pragmatic language) next year.

My son holds it together extremely well at school too. Teachers say he's the best kid they have in class. He does have some clear issues with some of the fine motor tasks, which they are working on him with. Last year, he was a basket case, but this year, he's doing well. And, like your kids, he comes home and lets it all loose!

Here's how I'm looking at it... and I'm new to all of this too, so I could be wrong.... But, he did way better this year than I ever thought he would, with fewer services. So, I'm willing to see how it goes next year with whatever they recommend. Now, that isn't to say I won't have specific things I want in his IEP... like certain things in the classroom he needs. But, if they need to cut down his 1:1 time with the Special ed teacher, that might be alright, as long as I can see he's getting the support with social skills and his fine motor issues somewhere else.

Their responsibility to our kids is to make sure they do well at school, and if they are thriving there, it's hard to make the argument that they aren't doing enough.

I'm going to continue some private OT as long as my insurance will cover it. Beyond that, I have my boy in Gymnastics and soccer to help with his sensory seeking... and I'll continue to put him in things like swimming and tae kwon do to help all of that out.

I'm saying all this with my next IEP meeting still in a couple of weeks... and I don't know exactly what the team has in mind at this point. But, I'm expecting they'll try to cut some things.. i'll push back a certain amount, but I'll also try to hear what they're thinking. I haven't felt like I was in conflict with the school system all that much YET. I'm trying to be as easy going as I can be about it at this point. When they cut some of his services early in the year, I was upset, but honestly, he's done so well this year, I think they were right in pulling back some.

I don't think there's a real cut and dry answer to any of it. All of our situations are so unique. Try not to get too overwhelmed by it all. I know, easier said than done. I think the thing that I had to come to terms with this year is that my child is growing and changing very quickly. I need to adapt to that. I understand that noone has a crystal ball to see how things are going to turn out for him, so all I can do is my best.

Good luck to you!

Your alternate program sounds lovely to me.

Does it sound to you, the one who knows your child best, like the right approach for your child?

There is nothing wrong with swimming against the tide, taking from the school what they offer that you like, and filling in all the gaps yourself because you prefer that to fighting. To some degree we all do that. Parents who home school have shoved the IEP all together and tend to be glad they have.

I loved our elementary school and I fought when it mattered to me, and I was convinced it mattered to my son. I didn't fight when my heart couldn't get into it. I tended to figure that if it really mattered, my heart would be in it, wouldn't it? Can you imagine NOT fighting for your child if they are being bullied? There you go, THAT you know matters. The exact type of services? We're a lot less sure.

Good parents follow their instincts, and try to find a balance that serves the needs of the WHOLE family. WHOLE family means that your needs are considered, as well. What good does it do to give your child the best services listed by the professionals if mom becomes a wreck and stops tuning into her child? Doesn't the child need the later more? Especially considering the professionals are rather limited in what they can accomplish, and it all is only good when all the pieces fit? So, we all have to pay attention to where the lines are for ourselves, where our needs collide with the "program," and where societal expectations actually stop us from being good parents.

It is never an easy thing to sort out and you'll question yourself a zillion times, but that is the process we must all go through. When you have the balance right you'll know, you'll be glad you've made the choices you did. Trust in your instincts and find what works for you and your unique family. No one else can tell you what that is or what it should look like.

Good luck.

misstippy and DW, yours are the sanest words I have heard in months. I'm not sure how all this will shake out, but it is such a HUGE relief to hear that I'm not totally nuts for not wanting to throw on a suit of armor, grab a sword and start swinging. I loved the bullying reference. You bet I'd be in there even minus the sword and armor for that one. Thank you so much for a little perspective on this!

after walking out of a 2 hour pupil service team meeting yesterday for my 14 yo feeling like nothing was accomplished, i am right there with you. i cant even get them to tell us his homework assignments when they are given. every meeting feels like a battle, and we are not on the winning side.

i quite often wonder with my 5 yo if we are doing enough. i see so many people talking about aba, pt, aides, this and that therapy.... dang, am i just missing the boat and not doing what i should? all he gets is st and ot, and then a few minor accomodations from his teachers like verbal prompting and a visual schedule.

a lot of this really depends on the child. what do they really need? what is the school offering? what gaps do i need to fill? and is the child succeeding? are they learning?

the most support ive found, the people who help me in the fight and take some weight off my shoulders, is from various school personnel. the asd consultant who is assigned to both of my kids ieps has been wonderful. she was able to direct me to a woman at a local disability network who works as an advocate (freeeeeeee yay, cause we are broke). she in turn has pulled in the director of sped student services who contacted the principal at my 14 yo's school. that sent the principal scrambling. of course, they still arent cooperating very well, but its getting a bit better, and i now have multiple people on OUR side telling the school what they MUST do, and not just having the school tell me what they arent willing to do.

i dont want to fight, and it bothers me that so many of us have to. i am a pacifist by nature. but i look at it in the same light as with my kids; pick your battles. some things are important enough to fight for, others you can let go and see how it works. and if you need to fight, try to find support from someone. dont go it alone.

As per usual, DW said it all so beautifully.

Yes, I frequently feel like taking my ball and going home. I also have many Aspie traits/have Aspergers myself, and I often find the advocating process excruciating. There are times when I accept what is and stop fighting, sometimes because I feel confident that what is offered is adequate, sometimes because I don't think pushing is going to accomplish anything more than creating bad feelings between myself and the school, and sometimes because I just don't have it in me. When my kids are suffering/in danger mama bear takes over and I will fight tooth and claw for what they need, but when it is a grey area like pushing for accommodations that will likely benefit them, but who really knows in the long run, then it is tougher to know what to do.

Lately one of my sons is doing really well at school, and I see the school slowly withdrawing various accommodations and services. He has been graduated out of speech, he is no longer attending the social skills class (this is his choice), and I am not sure what to do. Do I push and fight to retain these services in case things start to go downhill without them? Or do I take a wait and see approach? Frankly, I'm tired and the school year is almost over, so I've opted for the latter. We'll see what next year brings. I may be in there fighting to get those services back.

Sometimes we tend to undervalue those things we do at home to "fill in the gaps". Therapies and services are great, but absolutely nothing will replace that 1:1 attention from Mom and Dad, and the chance to experiment and play and be a kid. There is so much you can provide regardless of what the school does or does not do, particularly at 5 & 3yo.

Yes, the main benefit I've seen from the home OT and ST we receive is that my son gets to socialize with people who aren't Mom and Dad. And I'm a bit of a hermit so I appreciate that, but most of what they suggest we work on are things that I already do or don't care to do for some reason. There was a lot of pressure for us to enroll him in preschool when he turns 3 at the end of the month, but I don't feel he's ready and that the experience would be harmful to him at this point. When the recruiters for the school realized I wasn't signing him up they said *gasp!* but that means he'll no longer have therapy! As if it were the end of the world. *Not a big deal.* (One lady even lied telling us we HAD to put him in a school when he turned 3 -no we don't- and as if I didn't know homeschooling was an option. She must have had some sort of monetary incentive for pressuring us.) I've come to realize there's a bit of a "one size fits all" mentality when it comes to IE. And come to find out when I decided not to sign him up for school right away his home therapists were able to file an extension and are still coming to the house.

If the school has the programs avaialbe and are just not offering more and you feel your child needs it - put on the war paint and have at them mom. I needed to do just that to get my daughter's social skills more closely reevaluated. My 8yo Aspie is a bright, funny, friendly, warm little girl that has charmed every teacher,aid and supportstaff member around her. She is unfailingly polite, cheerful, helpful and has no fear in walking up to people, introducing herself and asking them to play. Because of this outwardly 'normal' presentation they essentially told me I was overreacting and that she's not 'as bad as you think'. I probably have AS too and I sat in that meeting a crying mess but I wouldn't let any of them leave until they agreed to at least give her a more thorough evaluation. They weren't looking close enough. I just wanted them to take a good thorough look.

They did. They immediately set up social skills class and put her into an additional social skills club as well.

Don't be afraid to make a scene. I honestly believe that many schools simply use intimidation into bullying families into less services because of the funding. Fight for what you feel your son needs and if you don't think you can do it alone, an autism advocate can help.

I HATE IEP MEETINGS!! !! !! !

I'm so glad I don't have to do them anymore!

It was even worse before the diagnosis, which wasn't until he was in 5th grade. I went to one conference meeting thing with all the edjamacators, to discuss my son who was weird and not doing what he was supposed to be doing in school. I took time off work for it. They spent a solid hour taking turns telling me the many ways in which my son was weird and not doing what he was supposed to. I already knew that! That's why I went there! Finally, after it seemed as if they would never run out of steam, I interrupted and said, basically, I already know he's weird and not doing what he's supposed to! What I'm here is to find out what is to be done about it! They looked at me as if I had sprouted a second head or something.

After the diagnosis, (and mine at the same time!), it was IEP meetings where I was basically given assignments to make sure he did what he's supposed to. Easy to say, I was not only an Aspie too, but working full-time plus. So there was always a lot of Disappointing and Want Him To Be Making More Progress and Needs More Discipline, and there I was, an underachiever just like when I was in school!

Thank you so much for all of your replies. I get the feeling that you all really GET it. I met with the teachers on Friday and had a call from the Developmental Ped on Friday afternoon. If only I could get them all in the same room they could duke it out for me and I could stand back and watch in horror. I have a call in to two separate advocates, if nothing that to just give me a little guidance. The worst part is that we're still not done settling son #1's IEP and we have son #2's meeting coming up in 3 weeks. It's so hard to know what to do. Add to that the new Insurance laws in my state, and having to find out what that's all about, it's consuming me. The bottom line is at this point I feel like my kids need an every day break from us as much as we do from them. We're all stressed and frazzled! Family and friends have completely dropped out at this point and we're doing it all on our own.

Thank you so much for the support here.