Actually you did great by getting a good IEP right now. When you move, your IEP will transfer with you. Your effort will not be in vain.

Anonymous wrote:

Anonymous wrote:^^op again... meant below average. And going back to that, isnt it so hard to hear your kid described in percentiles and numbers like that? One of the scores, DS was in the .5th percentile. I didnt even know how to respond bc Ive never heard of such a thing and Im like my kid has language delays, major motor planning issues, how can these tests even measure what he knows when he cant motor plan and use language correctly enough to process the questions/tasks? And then I get wrapped up in the why- well why cant he motor plan or use language etc?? Did I not read enough or expose him enough to sensory rich environments, was it that time he fell and had a minor concussion? Was it bc he was breach? Did I not drink enough water when pregnant and maybe that caused him to be breach which caused these problems? My mind races with all these questions and thoughts. Its all so confusing and hurts to now have to think of my DS who was my precious bundle of joy as in the .5th percentile in this or that. Ya know? Trying not to of course but coming off IEP meetings, its hard not to. Sorry for long vents!!!

I'm the "kabuki dance" poster and my child also has motor issues and severe language issues. Try not to concentrate on the percentiles because as you wisely note, children like ours can't effectively be tested using conventional means. You recognize that he has motor and language issues so the concern is not so much the percentile he falls into but getting him the proper therapies and technologies to assist him when he is very young. Can you post a bit more about the plan they are suggesting? His age? Placement? Are they recommending AAC for him? Is he doing private therapy? Are you in Maryland? I would be happy to share our roadmap and some good private resources that you might consider -- my child is 11 and we've been through A LOT of IEP meetings, testing, therapies, camps, you name it! It gets easier, it gets better, and there is always hope, OP.

PP thank you soooo much. I would love to hear your roadmap and resources. Can I email you since there is so much detail?

Anonymous wrote:OP - the upside is that if your child scores in those percentiles, the chances of another district blowing off hte issues are low. They just can't ignore the data, and having been through this wringer once, you will be stronger the next time.

Know that this is a marathon -- you'll be doing these meetings for years and your child will change and improve, so the IEPs and school decisions will need to change too.

It's really important to give yourself a break, and not be consumed by this. I was for several years, and ended up with serious depression and anxiety. Therapy and medication for me helped, and helped me be a better parent and advocate or my son.

Good luck - it does get better. You can do this -- even in another city if you must.

Thanks!

OP - the upside is that if your child scores in those percentiles, the chances of another district blowing off hte issues are low. They just can't ignore the data, and having been through this wringer once, you will be stronger the next time.

Know that this is a marathon -- you'll be doing these meetings for years and your child will change and improve, so the IEPs and school decisions will need to change too.

It's really important to give yourself a break, and not be consumed by this. I was for several years, and ended up with serious depression and anxiety. Therapy and medication for me helped, and helped me be a better parent and advocate or my son.

Good luck - it does get better. You can do this -- even in another city if you must.

Anonymous wrote:^^op again... meant below average. And going back to that, isnt it so hard to hear your kid described in percentiles and numbers like that? One of the scores, DS was in the .5th percentile. I didnt even know how to respond bc Ive never heard of such a thing and Im like my kid has language delays, major motor planning issues, how can these tests even measure what he knows when he cant motor plan and use language correctly enough to process the questions/tasks? And then I get wrapped up in the why- well why cant he motor plan or use language etc?? Did I not read enough or expose him enough to sensory rich environments, was it that time he fell and had a minor concussion? Was it bc he was breach? Did I not drink enough water when pregnant and maybe that caused him to be breach which caused these problems? My mind races with all these questions and thoughts. Its all so confusing and hurts to now have to think of my DS who was my precious bundle of joy as in the .5th percentile in this or that. Ya know? Trying not to of course but coming off IEP meetings, its hard not to. Sorry for long vents!!!

I'm the "kabuki dance" poster and my child also has motor issues and severe language issues. Try not to concentrate on the percentiles because as you wisely note, children like ours can't effectively be tested using conventional means. You recognize that he has motor and language issues so the concern is not so much the percentile he falls into but getting him the proper therapies and technologies to assist him when he is very young. Can you post a bit more about the plan they are suggesting? His age? Placement? Are they recommending AAC for him? Is he doing private therapy? Are you in Maryland? I would be happy to share our roadmap and some good private resources that you might consider -- my child is 11 and we've been through A LOT of IEP meetings, testing, therapies, camps, you name it! It gets easier, it gets better, and there is always hope, OP.

^^op again... meant below average. And going back to that, isnt it so hard to hear your kid described in percentiles and numbers like that? One of the scores, DS was in the .5th percentile. I didnt even know how to respond bc Ive never heard of such a thing and Im like my kid has language delays, major motor planning issues, how can these tests even measure what he knows when he cant motor plan and use language correctly enough to process the questions/tasks? And then I get wrapped up in the why- well why cant he motor plan or use language etc?? Did I not read enough or expose him enough to sensory rich environments, was it that time he fell and had a minor concussion? Was it bc he was breach? Did I not drink enough water when pregnant and maybe that caused him to be breach which caused these problems? My mind races with all these questions and thoughts. Its all so confusing and hurts to now have to think of my DS who was my precious bundle of joy as in the .5th percentile in this or that. Ya know? Trying not to of course but coming off IEP meetings, its hard not to. Sorry for long vents!!!

Anonymous wrote:OP, I spent my first IEP meeting (8 years ago) fighting tears, thinking "This is not my life...this cannot be my life." No one likes IEP meetings. They are at best an insane kabuki dance of which 85% is meaningless bureaucratic bullshit.

Try to block out some time for yourself after the meeting for a pedicure, a nice lunch out, or whatever makes you feel good. We are all rooting for you.

I wish I had your advice of blocking out time after meeting before! I went directly from a 2 hr IEP meeting to picking up 4 yr old DS and 1.5 yr old DS and taking them straight to the playground. Chasing around my 1.5 yr old while he climbed and was running all over the place was the last thing I needed to be doing. I had no time to take a deep breath, process, think, digest and ended up having such anxiety at the playground. I needed to get out of there so I made the kids leave with me and then was on edge the rest of the day. Definitely could have used a break in between the meeting and going back to momming.

The IEP meeting was tough listening to all the "low average" and "borderline" scores from the testing and hearing everyone analyzing him and of course having a meetig focused on all the negative things... the kid was in my belly just 4 yrs ago- I still want to dote on him, not focus on every negative thing. But Im grateful bc they did their best to keep bringing up positives and talking about how sweet and cute he is, so I think they were being more sensitive than theyve been in the past... Prob bc I cried at the first meeting I had with them ? They did put in great services in his IEP (again after the first meeting I had with them where I had to fight with them just to evaluate him) and part of the challenge (where the fighting with DH comes in) is that we'd been planning to move out of state this summer and now with this IEP in place for next year and all the hard work Ive already put in, I dont think I can handle moving right now and starting over with a new IEP team and dealing with this all over again. So this weight on my shoulders of making such important life decisions is killing me bc any decision we make impacts DS and his services. And since I cant predict the future I dont know if staying or going will be in his best interest. Im putting tons of pressure on myself to do the right thing but I dont know what that is. I can hardly sort through all my thoughts. I keep telling DH that dealing with all this on its own is enough in itself but when u add in other things like moving etc, it adds sooo much extra work that we really dont need in our life right now!

Ahh,thanks all for the support and Im sending it right back to you. Nice to know were not alone.

Anonymous wrote:I hear you, OP. My kid was recently diagnosed with a rare disease, and I feel the same as OP. Overwhelmed, alone. I just feel broken. I cycle through my feelings endlessly: hopeful, then numb, then angry, then hopeful again, over and over.

OP here- so sorry to hear this

I hear you, OP. My kid was recently diagnosed with a rare disease, and I feel the same as OP. Overwhelmed, alone. I just feel broken. I cycle through my feelings endlessly: hopeful, then numb, then angry, then hopeful again, over and over.

I'm feeling the same way -- we are all in the same boat. Which helps to know.

A note on your DH: most DHs are just like him. Many have a much harder time coming to terms with what they have been dealt. I fought with my own DH over DS's diagnoses. He didn't believe they were true until he had to deal with them on his own repeatedly. DS has CP and its evident that effects most of his body and DH eventually excepted that. DS also has ADHD and DH didn't believe it until I had him do homework with DS. It took a while, but he did change his tune. I still have to remind him to have patience but he's gotten better at dealing with DS. Its important to have DH go to appointments with you, at least in the beginning. It helps get both of you on the same page and you don't have to shoulder the blunt of the stress on your own.

DS was diagnosed 6 years ago and I still have bouts of doubt about my actions and the paths that we have taken. I have to remind myself that you do what you can, when you can and stay positive.

Anonymous wrote:

Anonymous wrote:Hi all- Im coming here after my childs IEP meeting in which Im feeling extremely overwhelmed and I have no one to turn to, to help me process or to just talk to. I dont like talking to my mom and sisters in detail bc they dont fully understand any of it. My husband and I are fighting. I have no time to go to a therapist. I dont know what to do

Hang in there mom. I feel your pain. It feels hard because it is. Nothing to do but feel what you feel. Go to sleep, and try again tomorrow. Your DC is and will continue to mature, grow and improve with your care and guidance. Say that over and over.

Well said.