Anyone ever come away from IEP or confrence feeling like they need their own diagnosis? semi-vent...

[stellabluz]

...Or just feel like an idiot of a parent? Or like their child is a direct reflection of their own weaknesses? Or like you "gave" them this cause you can't even distinguish what the hell is going on ???

Every time I meet with everybody, or even just the teacher, I feel like I am not "doing" enough with the dx my daughter has, like I should be doing more or helping them help her. But in all actuality, I have no idea where to begin. I *know my daughter, I *know she's different. I see her delays and see how it's going to be an up-hill struggle academically, but I feel so stupid myself sometimes I don't know how to even explain where I am coming from to teacher/speech therapist/ot/psychologist. And they talk to me with all the lingo and education that they have and I am sitting there bouncing a three month old on my knee, praying my three year old will go easy on us tonight, wishing it could be easier, or clearer for us all.

As she is getting older, it's getting more in my face. She has a dx of PDD-NOS, is a young young 2nd grader, doing well emotionally and socially for the most part, but has a really hard time with all parts of traditional learning and is nowhere she should be in terms of reading, speaking and math and such. I could bet money I have ADD as an adult and feel my focus flittering about in between parenting, creativity, and being and have learned to deal with it semi-successfully as an adult. Of course, until I have to do stuff so in reality as this....

Anyone been here? Should I get outside help to figure out where to target her needs with a clear dx and such...?

I guess I am just looking for a keyboard to lean on :/

[Linda on the move]

My DDs dx was PDD-NOS when she was younger (it's now Asperger's) and it is a very frustrating dx. It seems to mean "we are sure this kid is on the spectrum, but we can't figure the child out." 

I don't have ADD, but I felt like it when I was caring for a 3 month old because I never got enough sleep, and I gave up after 2 kids, feeling I was in over my head already. I really can't imagine have 3 such young child and dealing with the special needs stuff. I wish I could send you a NAP!

There's nothing wrong with getting another eval. My DD has had several, but I don't feel like we really got a clear picture of what was going on with her until she was about 13 because she just couldn't comply with the testing that well. So another eval right now may or may not really tell you anything new.

And it does suck, and I don't have any advice.

But here is another hug---

[SpottedFoxx]

Adding my .

Talk to child's doctor.  What therapies do they recommend?  Are you missing any pieces.  Have they heard of anything really beneficial in your area that maybe will help your child (like therapeutic riding or a social skills class)?  Ask the teachers.  They seem to know it all ;) so fine, since you seem to know my kid better than I do... what is the missing piece here?  What am I not doing that I should be doing?  What therapies does she need that aren't covered by the school?  Where can you get them?  Who do they recommend?  

We all do the best we can with the information we have.

[karne]

Yes, we've definitely felt that way.  I think that the age your dd is at now is one that is very hard--time, intervention and maturity are amazing, but you aren't there yet.  At that age I remember the angst and confusion.  I would bring someone with you to the meetings if possible, to be a second ear.  And be clear that you'll have a contact for follow up questions.  I think there's an awful lot that comes at you during IEP meetings, esp. if you are discussing testing.  Too much to take in at once.  I think it's perfectly understandable to feel overwhelmed!

[kittynurse]

Hugs.  I *do* have ADHD and I could have written exactly what you wrote.  I remember when we first started out on the diagnosis journey feeling so lost and totally not comprehending what everyone was talking about and being really hard on myself because I wasn't doing *enough*.  We were even very close friends from way back with the speech pathologist and I still didn't understand what the issue was half the time.  I'm sure she got tired of me asking her to explain!

Eventually we were fortunate enough to enroll our child in a preschool that was amazing and the teachers there really helped us a lot with the diagnosis process and basically did all the hard work for us.  Now that we are in the public school system, we are very lucky to have an amazing principal who I trust implicitly and I know that whatever he is recommending is going to be helpful for my child and I also know that if there's something I don't understand I can ask him for clarification.  Not to say that we don't do any of the work advocating for our child but I've given myself permission to quit beating myself up and to trust that our child is being helped in the best possible way.

Is there anyone that you can look to as a support system or an advocate to help you through all of this?  Is it possible there is someone on your team already who might be willing to take on this role?

Lastly, if you suspect you have ADHD, do yourself a favour and seek out a diagnosis.  Getting my own diagnosis was such a liberating experience - I no longer felt like I was a loser, horrible parent.

Good luck and please feel free to ask for support here anytime you need it!

Martha

[mamarhu]

Originally Posted by kittynurse 

Is there anyone that you can look to as a support system or an advocate to help you through all of this?  Is it possible there is someone on your team already who might be willing to take on this role?

 

A starting place for advocacy/support might be NAMI (National Alliance for Mental Illness) or the Autism Society in your area.

[MissBright]

Is your daughter reading yet? I'd be interested in hearing about that part of things, if you wanted a sounding board. (Teaching kids who don't learn through usual school methods is the work I do.) I'd be happy to talk and answer any questions you might have in that area. 

If not interested, no problem! I'm just tossing it out there in case it's one of the needs you have. :D

Paula

[Peony]

Ok so I had to laugh about the baby on your knee because I've been there soo many times before. Talking with the *insert the therapist of the day* while the current baby is strapped on me or nursing, or just there. And then there are the rest of the kids. I've got 4 and my 8y (oldest) is the one that has the most issues. The looks, and I can tell what they are thinking when they see me and the flock of kids that arrive with me. 

I don't always know what I am doing in regards to DD1. It has gotten easier, and harder again the older she gets. She is in 3rd grade and will be 9 next month. Maturity has helped some of the mental health issues. The school work has gotten more difficult every year, 3rd grade has been horrid with that, the jump in school work and expectations from 2nd to 3rd has proven to a killer. Having labels did help me because I knew what to research for and then I could ask for certain things or plan loosely or talk with the therapists better instead of "I have this kid and she is rather interesting." Which is what I felt I was doing before. 

[stellabluz]

Thank all of you so much for your replies. I really needed a bit of what ya'll gave me. the hugs, the i been there's, the advice, the questions you help me raise. It does give me something to go from, which is more than I had before while I was just spinning within myself. It also feels like there is hope! So thanks sisters!

Linda:thank you for your understanding.I think I should familiarize myself with the current eval's and then think about another. The PDD-NOS is indeed very frustrating.

Spotted foxx: Thank you for sorting out the ??s I could be asking. That missing piece is always what I am curious about. And I guess if I never find what or where it is, I can find a way to target ways to bridge that area and help her~

karne: I will do that next time. I never take my husband cause I feel he gets overwhelmed even more than I and then I have to help him feel better. I think he and my daughter are also "highly sensitive" and they are constant reminders of how much I need to slow down and be with them.

kittynurse: thank you for all you said. It is nice to hear I don't sound insane and might possibly look into an actual dx when I have the time for me again. I really like the book by Thom Hartmann on ADHD. He is so friggin awesome.

mamarhu: I should and will, I know there is some chapter of A.speaks here , thank you for a clear, just GO and find rec.

MissBright: I am all ears! She is not reading and is just know getting familiar with the character's sounds and the idea of how to put them together. She is also getting in the habit of "i dont know" and gives up easily. I see her get overwhelmed and dont want to push in case it is too much for her. But then I feel like she HAS more capability than that and is just being a kid. She THRIVES on praise and is so into pleasing me when I show how amazed and proud of her I am. I figure to keep goin with that and discourage any bad habits that may set up a pattern of "I can not"...

Peony: Hey from the aug.babe.group! You nailed it! I sometimes think they are looking at me like "why is this girl still procreating?!", but I know Im not that bad.lol! And I think we are already talking retention(finally! I pushed for it last year, but they were reluctant due to size and social matters, lame.) SHe just turned 7 and is in 2nd grade, very young and imature for that group! Luckily we have combined 1/2, 2/3 grades so I think that will be of help. We barely get homework done and always turn it in late. She is doing 1st grade math too. I have heard that jump is gnarly. I so wish I just would have started her later in K...Your last sentence sums up what I always do. She IS really interesting and awesome. Totally un-like any kid I know, she is supremely innocent and kind and I want that to stay with her and not get crushed by feeling inferior and alone.

Thank you so much , this makes my heart feel so much light, I should come here more often!

[kittynurse]

Originally Posted by Peony 

Ok so I had to laugh about the baby on your knee because I've been there soo many times before. Talking with the *insert the therapist of the day* while the current baby is strapped on me or nursing, or just there.

Me too!  In fact, one of the OT's created a social story for DS1 once and she included a picture of a mum with a baby in a sling "to more accurately represent (our) family'!  LOL