Have our IEP results now what?

[southermama3]

Hi I'm new here,
My oldest daughter 9 yrs old was born premature at 32wks and I was in severe eclampsia finally ending with severe seizures and an emergency Csect. Also, in 2007 I discovered her AD army father had been molesting her and doing it all via a web cam at night while I worked as a nurse.
She was very delayed due to being premature and we went through the birth to 3 program. This aided her in walking, talking and learning. Over the past 5 years we have struggled through a lot in school and out. Psychological, I can't even begin to explain. Finally, we enrolled her into a very good school which took the actual time to finish her IEP testing. She was diagnosis with ADHD in the summer of 2010. We started a regimen of medication that only resulted in her drastically dropping weight. Our pediatric dr at the time stopped it. Well two weeks ago I met with her school and we discussed their findings. Her iq score came back as a 77. She has the most difficulty in math, staying on task and staying organized. The teachers said she would go to the bathroom and "get lost" and the staff would have to find her. Is this normal? I have always joked that she was ditzy but is this real or a game? I have went a's far a's having the principal call her into her office and sternly explain to her how her education is her job and something she should try her best. I'm awaiting our insurance to look at the IEP to approve her more ADHD Rx therapy. I honestly feel so guilty that bc of my illness during pregnancy and me not finding out about her father is going to leave her completely broken for life. Where do I go and what do I do to make all of this up to her so that my baby girl goes on to be a productive, well rounded and productive woman?
Please tell me there's hope out there..

Kelly, 29

Mom to:
Bekah 9 ADHD IQ 77 & PTSD
Hannah~Grace 8 gifted student with-PTSD; night terrors & bed wetting.
Ethan 2 premie with no signs of any delay.

 

[buddy]

HI again! I just replied on your other post so this makes your coming here even more clear... I figured there was more to the story (hugs).

Her IQ is "low average" not BELOW average but in the end I personally do not put grand stock in IQ other than to see strengths and weaknesses and use for qualifying for services if needed. I think it seems that she most likely has some pretty serious learning disabilities and I suspect that even though the school did their evaluation, you might on your own want to get a neuropsychological evaluation (neuropsychologist). I would want to know more about her learning style. A neuropsychologist can help look at how her brain functions and how that is connected to her learning behaviors. In a situation like yours I would want them to see what kinds of specific skill deficits there are...... Like does she have more trouble with non verbal tasks, or verbal tasks, does she have subtle motor issues? Really explore all the processing issues that could be... auditory, visual, language... My son would run out into a field, where you can see everyone if you turn around, and have trouble figuring his way back for a LONG time. Now older and thru much therapy he does much better. He has trouble figuring out where his body is in space... He also has memory issues, specifically short term memory issues. It can make them look like they are not following directions because what you just told them or showed them disappeared into the cosmos.

I would add to that a very good private Occupational Therapist (OT) evaluation and speech/language evaluation to further check some of the things mentioned above in depth.

I am sure you are on top of the psychological stuff and I can only imagine that the trauma of that and the recent moves can only add to her distractability.

She may very well have adhd given the high risk of brain injury from her early history, but I suspect it is much more than that. I doubt that giving her a pep talk will help much, my son promises all the time to do better. But if he doesn't have the skills to do so, well then he can try all he wants but it is not going to happen. Does that make sense? My opinion, and certainly there is nothing special about it so dump if if you dont agree... is that if there is a chance they really can't do well, then we must assume that and give them the benefit of the doubt and try to help. Not to say they can get away with murder, but just that we need to always be searching for how to give them the tools to do better. You are well on your way in that area and that is a wonderful thing.


PLEASE do not feel guilty. you were a victim. You did all you could. You got ill, that too is not your fault. You are doing a great job. Do you know how many people can't get an IEP for their kids and you are far along in that process! HUGE pat on the back.

Finally, YES there is hope. You are just giving the the first steps on a healthier life. You are showing them you can pick yourself up and move on. These lessons are huge for a child. Keep taking little steps forward and honor the process of recovering from the trauma you have been through.

HUGS to you are your sweet ones.... hope you post often.

 

[southermama3]

Hi =P
I don't know how to really use this app so I don't know how to quote you verbatim, but what you said with your son on the field. We (her team a's I call us) concluded that she cannot mentally digest more than two steps. She gets automatically upset and all that does is make it worse. However, she pushes all she has to please authority. She is such a loving sweet gentle giving little girl that it just seems so unfair that she has to struggle this hard to grow up. When she was in therapy with the forensic psychiatric they ran a 4 hour test on her and couldn't conclude a direct answer so they just threw out a generic blanketed diagnosis of ADHD (here go take some pills) Once enrolled in this smaller school we were able to test her visually, auditory and psychologically the whole month of Dec. Listening to the results left me going "huh?" then spending hours on google. Honestly, with your reply I got more of an explanation that no one else has gave me. I have been searching google for weeks now and with your reply I know which way to go so thank you so much!
As a mom it hurts so much to see your child struggling this way...it has made me feel helpless.
Kelly

 

[JJJ]

So the school completed their testing and determined that she is eligible for special education services? Then the IEP is suppose to define the "now what".

In the IEP should be:

1. The goals and objectives that your daughter will work on over the next 12 months
2. The list of related services and the amount of time she gets them each week (eg. Speech - 30 min/week)
3. Placement -- where she is going to be educated, is she in a regular ed room? a Special Education room in a regular building? a little bit of both?

I'm not sure why your insurance company wanted the IEP or what ADHD therapy you are referring too.

WRT to the weight loss, my daughter struggles with that as well. For her, she cannot do the Adderall-type medications but does okay on a low dose of Ritalin-type stims (they are different). My son can't take the stims so he take Clonodine -- great for ADHD-Hyperactive but probably not so much for ADHD-Inattentive. Strattera is another ADHD medication that is suppose to be weight-neutral (it is not a stimulant). If you have only had her treated by her pediatrician, if you find a child psychiatrist, they are much better at teasing out the drug or drug combo that works for each kid.

 

[southermama3]

They have her in a erg room with a aide that helps her move through her classes. They switch rooms and she could not stay on task with that. We do 30 mins of math and comphrension type activities at home to help her go through like step 1 get eggs 2 flour etc. I have to try to incorporate that everyday. What I was asking about now having the IEP I wasn't for sure if outside of school could she qualify for programs that I don't know about. Considering I've only had the IEP for a few weeks I'm still trying to understand this process. In the state of Alabama u have to wait for ur pcp referral to go through and be approved for any specialist and it could go through tomorrow but we cannot utilize it til the first of the following month. I just don't want me to miss something that could help her.

 

[buddy]

The medical process and the educational process are basically separate BUT the ed team may need a medical diagnosis for confirmation of medical conditions which are legal disability areas that can be serviced in the schools. And in my experience, any medical person worth their salt has also been INTERESTED in our school testing and supports but they did not mean that it made a difference in what diagnosis they gave.

Now, where medical can get sticky is that they may see that an area you want to receive outside therapy for really should be treated in the schools.... so they have to be careful how they word things. I have found therapists are very good at knowing what words to use so they do not trigger an insurance denial.

It is usually more frustrating on the school end. I can say as a school therapist and as a parent of a child receiving therapies... it is frustrating on both ends. Guidelines REQUIRE that you only work on skill areas that directly relate to school. Most of us fight that even if the issue has an emotional impact, it then can have an academic impact. It is more obvious in terms of fighting for social skills training...but many schools try not to service that either. We were even being pushed not to help kids who have, for example, more "simple" issues like they can't say an "s" sound correctly. We are starting to be told that this does not impact school progress so kids should be seen in medical clinics. Huge theoretical reasons people fight that now.... For my son, he for sure had fine and gross motor issues that impact his overall performance in school but the schools are not providing direct therapy because they say he can sit fine, hold a pencil and write clearly enough. WHATEVER but again, the therapists are TOLD they can't take these kids and they can be audited and sanctioned if caught. But most creative therapists can word things in a way that works... I mean in my son's case he is testing in the FIRST percentile on things!!! Still not getting the services (we are working on that),

Only give what you are comfortable giving. Ask the therapists you are working with about it in case anyone is trying to make a case for denying service. I hate to think that way but just in case.

 

[JJJ]

Ok, now I understand your question. There aren't any "automatic" things that she qualifies for because she has an IEP.

It is great that you are working with her at home. A lot of repetition of instruction and just doing the task every day is going to help her so much.

How does she feel about being in the regular ed classes? My kiddos HATED IT. They felt dumb and constantly confused. They knew that the other kids were "getting it" when they weren't even sure what "it" was. Eeyore now does 30-40% of his day in regular ed and the rest in Special Education doing regular ed work. Tigger just started a regular ed class last week (except for gym, it is his first reg ed class in over 4 years). The Special Education classes are better designed to focus on a child's learning problems, do directed reading instruction, etc. If your daughter continues to struggle despite the aide and the extra work that you are doing, you may want to call an IEP meeting to dicuss giving her some time in a special education room (maybe just for math and reading?).

If that IQ is accuarte, she will likely always struggle academically. But it is "high enough" that she should be able to learn to read and do arithmatic. One thing to keep in mind is finding that balance between getting the best academic development and (when she is older) the right vocational training. Of course, her ADHD and working memory issues may have caused that IQ score to be artifically low. The school is required to re-evaluate every 3 years. If she gets some strong support over the next 3 years, I would insist that they retest her IQ at that time, you may see that number go up. (Tigger had an IQ score lower than felt right; it has now been 3 years and they will be retesting him in the Spring. I know it is just a number but it hurt to hear the low score and I'm hoping so badly that it has gone up.) The professionals used to think IQ was static but more recent data has shown that IQ can fluctuate based on lots of things -- untreated learning disabilities and mental illness being the two biggies.

 

[JJJ]

Ok, now I understand your question. There aren't any "automatic" things that she qualifies for because she has an IEP.

I should clarify -- there aren't any that I have heard about -- your town/state may have opportunities that are unique to your area.

 

[pajamas]

Quick note specifically re:weight loss & growth with ADHD medications. I've been told the weight loss and growth delays are temporary. Holden did not grow for 2 years on stimulants and was treated by a developmental pediatrician. He was approved for growth hormone after endocrine testing. We didn't do it because he was so stressed by any needles, etc. and we did not think he could adjust. Once Strattera was invented, he switched to it. He is now 5'9" - 5'10", which we believe is the height he should be genetically. No long term effects.

PJ

 

[southermama3]

Thank y'all.
Turtle is very popular in her class. Socially she is a star. Outspoken funny and eager to please. The aide she has doesn't seem to make her feel out of place so far. When they told me the results I sat there shocked bc she is very talented in reading/writing. She writes books and illustrates them. Her problem is moving and remembering her tasks. Mathematically she just doesn't get it and she is at a 2nd grade level. I compared her to Tim Burton and how flamboyant and imaginative he is. She is my first child and I'm learning this process with her. I don't want to drug her to the point that she's lanky and emotionless. With the psychiatrist she sees now for the PTSD is more geared toward family dynamics and trauma. She wrote me a referral to UAB that I'm currently waiting on the team to review and approve her a's a patient. Her psychiatrist did tell me to not go out and pay for centers like sylvan. She said I could do their job but better bc she knows me and won't try to "give them the answer she thinks they want to hear." so like I said I researched online and they said repetition and corky ways will more than likely work better and turtle won't realize she's be taught something.
Another question is with this IEP and needed help would you all recommend I retain a lawyer to apply for social security? We live quiet a distance from UAB and with the cost and travel plus educational supplies do u all think we stand a chance for her to be approved? Do any of ur children receive SSI? When we was going through the evaluation they determined she was nearsighted and it was moderate. I had to path 400$ for glasses and $1200 for retainer lenses to wear at night to keep her nearsightedness from getting worse. I want her to get everything she needs, but I have to admit financially it's getting hard...

 

[buddy]

retainer lenses for nearsightedness? wow, I have never heard of that before. I am really nearsighted, they just increase the strength of the lenses.... Not so big a deal... is she at risk of some serious issue? That is a lot of money. Very interesting. Just curious what it is.

It certainly wont hurt to apply for ssi. there is a website for you to answer questions about it. If she meets the definition of disabled she should qualify and most people say that they are denied the first time. I know of people who were approved right away and we have a mom here who just found out her difficult child was approved the first time too.

Your daughter is not in quite as severe a situation as hers but she sounds to have more issues than one of the students I helped apply. (he was a gifted/talented aspie). You can also call your county to ask for a developmental disabilities case worker. They can help you apply for any financial assistance. Here many families get a "family grant" or other grants that are nto income dependent. they allow them to pay for things that insurance wont cover. If she is eligible for MA for disabled kids then you may get more coverage too. There are waiting lists for many programs but sign up for them all... time flies and the economy changes and what is a long list one year can be no list in five years. My son got on a waiver back when our state had extra funds they applied to MA and ALL people on ma at the time could just sign up and get the waiver. Thank heaven because it is a lifetime waiver as long as he qualifies (which will be life for him)...

Keep digging... it is all worth it, but enjoy your time with her too. Take time to do little things. I actually am shy in new situations, but push myself to do things and it is easier for me when it is related to my son... going to sports or activities etc. I volunteer for committees so I can be where he is.

 

[southermama3]

Well her nearsightedness is very bad. Her (sperm donor a's I call him) is a level 8(?) with his nearsightedness and the dr suggested I buy them bc he couldn't say she would get worse and honestly after all we have went through the last thing she needs is to lose her sight. After what u said I'm kinda thinking I was dooped. (?) I don't have any visual problems so I'm poorly educated when it comes to that field.

Im going to try to see what she does qualify for. Especially all that you suggested.

I am very inverted in public. Online I can be me completely. Bek on the other hand...a social butterfly weird huh?

 

[buddy]

OH I was certainly not suggesting anything! I just have never heard of it and I am curious... I love learning about new stuff. Heck, surely she doesn't need to loose her vision too! How does it work anyway?

 

[southermama3]

Oh I thought they ripped me off lol well they are called retainer lenses and like a retainer for orthodontic retainers you wear them at night and they are like contact lenses. What they do is they can't reverse eye problems but they can slow or stop her sight from getting worse. She wears them at night and the first pair is $1200 and the lenses here on out are $600. She wears glasses during the day tho.

I'm glad you responded back to this bc I called the disabled advocate program here and she qualifies for a lot of programs I faxed them her paper work and tomorrow her case worker is going to call me and start the process. She said they have a camp during the summer that makes learning fun instead of feeling like it's a chore. I called a SSI lawyer also and he said she qualified to apply and I'm heading to his office now with her medication records and IEP from wv and here. Thanks to u I got a lot accomplished today and for ONCE I feel like I'm helping her!! Yay!!!

 

[buddy]

OH gosh I have tears in my eyes! I am soooo happy for you!

 

[southermama3]

Thank u so much. The Lord I really believe sent me to this site. I have felt so alone for so many months now and since talking to all of you I actually feel like I'm apart of a community. <3