My daughter has been fortunate enough to be able to keep up with her classmates academically – not as well as before her AVM, but she’s hanging in there. Her two big struggles are ones she only shares with me – something that makes others think she does it to manipulate me – she claims to have trouble making friends and she wants to be in a special ed classroom because hers is too big. She does have friends, though she’s lost quite a few of them. I am told its because my daughter doesn’t TRY to be a friend. I asked Neuropsych if it’s possible that she doesn’t know how. Doctor said yes, it’s absolutely possible. I don’t know what to do.
Next issue … My daughter wants to be in a special ed class. Nobody has ever heard of a child WANTING to be in special ed. Part of me feels like giving her a try in one of the Level 1 classroom, somehow. Is she doing it for attention?
Have you spoken with her teachers to see what they might suggest? And you might have to help teach her to make friends, such as role playing with her.
In our schools, the child's needs would have to indicate they needed to be in special ed, so just asking wouldn't accomplish it here.
I think all schools in the US have IEP's (Individual Education Plans) if the student needs special assistance, again, you have to qualify for it. Her AVM might make that possible.
Hi Tina, I'm answering your post because I have some thoughts to share with you. They are my beliefs and nothing more. Your neuropsychologist is absolutely correct that it is possible that her AVM plays a part in her inability to show good social skills. Her teachers perspective that she doesn't try to be a friend is not surprising, unfortunately. I am not familiar with Sp. ED. laws in IA. However, Every state is required to meet the requirements of Federal law and may provide additional law that supports students with disabilities. Ron is correct when he states that students must qualify for special education services and individual education plans to support that student. Many states/districts have a 3 tier system that they use to support all students. Most students are on the base tier that indicates they are developmentally/educationally right on track for their age/grade and are successful in the regular education program. The middle, much smaller tier, has students that need extra attention/support in an area, say math, where they might only be partially proficient in some of the required skills compared to their peers- they need a little extra help. Think of small groups that address specific skills that are re-taught and practiced. The top tier is much smaller with less students because they require more support, frequently direct support, to help them become proficient in skills. The purpose of special education is to remove barriers that block students from accessing their education due to their disability. Having said all that, it is a process. Many districts/schools have a process that involves providing assistance to students. Some involve making a plan that will address ways to support students that are having difficulties in either academic or social skills. Another way that student support may be addressed is through a 504 Plan. Frequently ADHD students are supported through 504 Plans that set up specific accommodations that allow a less distractive area for testing or additional time to complete tests. When other support measures have been tried and are unsuccessful at supporting a student the "team" may decide that an educational evaluation may be necessary to determine if a student has a disability that does not allow them to access the general education without significant special education support. Havinf said all that, a parent or doctor can request that a student be evaluated for special education services. Put it in writing and they must respond within a set amount of time. To find out direct information for IA Special Education services go to the state education website and you will find their department of special education. I would check for you but it is late and I have school tomorrow, lol. I'm sorry this is so long. I would be happy to help in any way I can. Please contact me if you have any questions. the 2 struggles that she is experiencing are very interesting. The location of AVM's will have an affect on certain brain functions/abilities. For the second part- I'm glad she wants to be in sp. ed., selfish reasons here. I doubt that it is for attention as in manipulating- I can't remember her grade right now. the fact that she feels her classroom is too big brings up another set of questions. I don't know what a Level 1 classroom is. Our students are in regular education classes but can receive support in their regular classrooms and sometimes need limited pull out time away from their regular classroom 30-40 min. per day. Hope some of this helps. ~Elizabeth
One thing I'd like to expand on is the time required to place a child. It's not an overnight or a one week deal. It likely starts with you meeting with her teacher, the school's counselor if there is one, then the school principal. It requires a "staffing", where all the child's teachers meet to discuss the situation. Most often, if warranted, it can require testing. Around here, there is a 6+ month waiting list to be tested by a handful of "acceptable" doctors.
I don't think it's uncommon for it to take one year to place a child by the time all the boxes are checked.
I don't think it applies in your case, but in our "always progressive Kansas", dyslexic is NOT a diagnosis which merits special ed! Can you believe it?????????????? So most of the time, students determined by a medical DR to be dyslexic HAVE to also be diagnosed with at least one other "acceptable" condition which merits special ed.
Be prepared to face a lot of bureaucracy above her teacher's level. My wife tutored dyslexic students after she retired. More than once, she's been invited the parents to attend a meeting with the child's principal. One principal told them "our school already has over the quote of IEP's, so we can't add any more now." My wife was in his face quoting state law, and I'm sure he realized with what the parents just heard, a big lawsuit was in the offing if he didn't change his mind and grant an IEP. Guess what, the child got his IEP.
Her teacher can be a great ally and provide 'off the record' "suggestions" for you. Listen closely as the teacher has to cover their ass with the school and can't officially provide guidance, but every teacher I've ever met will go to great lengths to help their students. Best wishes,
Ron, KS
Okay, I just finished writing a long response and the site dropped me. Shorter version- Ron dyslexia can not qualify as an individual disability but may be part of multiple disabilities for eligibility. Iowa special ed. law does allow parents to request testing for eligibility. However, that does not mean they have to test the child. IA must follow federal law just like every other state. They cannot require students to jump through hoops or climb tiers, to exhaust regular school supports, before they can be tested. If a disability is suspected then the child must be tested. My suggestion would be to seek eligibility under OHI, other health impairment, due to multiple surgeries/procedures on her brain. Frontal lobe bleeds or surgeries can cause problems related to executive function and behavior/social skills including impulsivity, organization, focus, self regulation among other things. Once someone sticks their fingers in your brain you are not the same. She is a young child with a developing brain that has suffered trauma. Just because she is not failing, yet, does not mean she does not have a disability. If she has to work twice as hard as her peers to access and acquire knowledge she needs additional support. If she sees a neuropsychologist they could be of helpful. Checking for a special education advocate could also help. Sending positive vibes/prayers your way. Have a wonderful weekend. ~Elizabeth
Elizabeth, thank you for the feedback. I was able to switch Rose to a different school that has a wonderful special ed department and a very involved staff of school psychologists and therapists. They’ve been very helpful so far. Rose is feeling more relaxed – she even asked her teacher for help when she was assigned a project that had her very anxious (huge step for Rose!!!).
Part of the challenge is emotional, giving Rose time to accept the way her brain works and the way her eyes work. Once she accepts it, I think and hope it will be easier for her to let others see who she is – a smart determined little girl who may have different interests from some other kids and different abilities but still wants to be just a little girl.
I am sure a fight for life has changed her emotionally more than even I realize. I was told there was a 2 pct of survival even after the emergency craniotomy to stop the massive hemorrhage. She was considered critical for at least a week. She woke up and couldn’t walk or talk or move anything on her deficit (left) side. Even though she doesn’t remember any of it, I know how much it’s changed her life. She knows that very well.
Sorry I missed you Tina, I was stoking the wood stove, lol. I do have some information from the Dept. of Ed. in IA. It's about parent requests for evaluations and it's long, lol. Here is the info.
Parent Request for Initial Evaluation This explains that parents have the right to request an evaluation for special education at any time, and provides guidance for public agencies on appropriate responses.
There have been frequent and persistent questions and concerns about the right of a parent to request an evaluation for special education services when the parent’s child is participating in general education interventions. The Department hereby restates longstanding positions on this general issue. 1. Federal (34 C.F.R. § 300.226) and state (Iowa Admin. Code r. 281—41.312) law recognize the value of attempts to resolve educational difficulties prior to referral to special education. Since August 1995, the federal government has approved Iowa’s rule for general education interventions.
2. Iowa’s rule on general education interventions specifically provides that that a parent may request an evaluation “at any time.” Iowa Admin. Code r. 281—41.312(4).
3. Not every parent request for an initial evaluation needs to be granted. A full initial evaluation is required only if a child is suspected of having a disability. If a public agency does not suspect a child of having a disability, the agency need not conduct an initial evaluation. Letter to Williams, 20 IDELR 1210 (OSEP 1993). In that case, the parent is entitled to a prior written notice, including an explanation of why the public agency refuses to conduct the evaluation. Id.; see Iowa Admin. Code r. 281—41.503.
4. If, at any time and for any reason, a public agency suspects a child of having a disability, the agency must seek consent to evaluate. According to the United States Department of Education,
it would generally not be acceptable for an LEA to wait several months to conduct an evaluation or to seek parental consent for an initial evaluation if the public agency suspects the child to be a child with a disability.
71 Fed. Reg. 46,637 (Aug. 14, 2006).
5. Several parents have been advised that their children would not be evaluated because their children had not completed a required number of days in general education interventions or had not progressed through a requisite number of “tiers” or “levels.” This is inappropriate. The only relevant question is, “Is this child suspected of having a disability?” If the answer is “yes,” parental consent for an initial evaluation must be requested, regardless of the amount of time in general education interventions or the number of layers, levels, or tiers in which the child has been involved. As stated by the United States Department of Education concerning pre-referral interventions, “the LEA cannot refuse to conduct the evaluation or delay the evaluation until the alternative strategies have been tried if the LEA suspects the child has a disability.” Letter to Anonymous, 19 IDELR 498 (OSEP 1992).
Please feel free to contact the Department if you have questions about this policy clarification. IA Dept. of Education-
Rose just needs things presented a step at a time. “Do this project,” is not something Rose can do. When that happens, I look at the sheet and walk through the directions one at a time. Even then, making note cards still requires me helping her determine what information is important and helping her spell each word a few letters at a time.
That isn’t something teachers can see. I don’t know how teachers can help or if Rose needs a resource that gen ed cannot handle.
Hi Tina, If they decide to evaluate Rose (my middle name-lol) they will do cognitive testing that will indicate things like her processing speed and generally how she thinks. With TBI thinking process can have deficits and that would allow the school psychologist to make recommendations for classroom teachers and how to meet those needs. Scaffolding projects or steps to math problems solving would be a good idea as well. If she has short term memory issues it will be helpful there as well. It sounds like she has some executive functioning skills issues as well. Nobody knows anything for sure until the testing is completed. I'm glad she is in a new setting that seems supportive and willing to help Rose get the support she needs. As for Sp. ED. departments "counting on you being misinformed", that has not been my experience over the last 30 years. Special Education law is very complex and has frequent updates/changes. I have found that many district/school errors are not because they don't want your child to qualify or that they are trying to be deceptive because you won't know the difference. It is because they are not aware of, or up to date with changes within the laws. Just some of my thoughts. Let me know if I can help in any way. Have a great night ~Elizabeth
Hi EWillis-I don’t have kids, but I hold a very strong belief that ALL kids deseret an education, no matter what kind of assistance is necessary for that to happen.
I volunteered/stipend position for my grad. degree for a University department that provided alternative methods and supplements of learning and test- taking. Although this was secondary education, I’m unsure of the laws, but I am aware of numerous additional obstacles that learning and test-taking involves when one has a visual or non-visual disability.
Aha fever the laws, you might consider home-schooling-if that’s an option-and/or different “outside the box” options like Commission for the Blind and Dyslexic that have a slew of recordings of texts, etc. for those unable to read, etc.
There is a nation wide book service (Bookshare)for students with reading/visual disabilities that is free. They provide all kinds of digital books, including textbooks, in printed text that also reads the text to you. You can even highlight areas and make notes right on the computer.
We seem to have a couple of issues at school – visual deficits and emotional liabilities. She needs her work broken into chunks. Her teacher is already overwhelmed with the class she has, so she simply cannot have the time to hold Rose’s hand through every element of school. Rose went to the nurse twice yesterday – coincidentally both times were before classes about which she’s very anxious.
She has an IEP, but it’s very unusual because it’s completely based on her visual deficits.
Hi Tina! I wish I had a copy of her IEP, lol. If her primary disability, for eligibility is visual impairment, then it is not sufficient for her needs. When is her 3 yr. evaluation due? It has to be listed on her IEP. Multiply disabilities must be addressed in her IEP but proof of them follows the same process as initial eligibility determination of disability. 'm going to send you an email so we can talk. As for the teacher being overwhelmed- she is a professionally trained teacher and adult. Her feeling of being overwhelmed is NOTHING compared to Rose's feeling of being overwhelmed, frustrated, confused and alone. That teacher needs to put her Big Girl panties on and work with Rose's Case Manager to provide Rose with an appropriate education, which is required by federal law. * Before any teachers comment about being a regular classroom teacher and the difficulty and demands....I know! I taught regular ed. for 10 years before I added special education certification. The key part for regular ed. teachers is to go to the Case Manager, spec. ed., and team with them to modify/create appropriate materials to meet the students needs.* Rose will continue to go to the nurse as she may manifest physical symptoms related to her anxiety of being in a class where she has difficulty being successful. Nobody wants to be where they aren't successful or feel stupid- even adults. Okay, this is a long post again, lol, sorry. ~Elizabeth
I am happy to see you recognize that things have changed for your daughter. You should tell her that.
I had seizures and surgeries from AVM. I know how it has changed me. From doing math to creating stories to making friends to talking, the brain I live in doesn 't work the same. I think of it like driving a car. This separates me as the driver from the brain as the car. This car I'm driving is no longer firing on all cylinders. There are problems with steering and one of the headlights is burnt out.
This means I can't race in the Indianapolis 500. Instead, I work on slower drives and take time to fix the problems with the car. This may sound dumb, but it makes it easier for me to separate the physical brain versus me the person.
So maybe she is thinking of Special Ed in a similar way. Something to give her time to fix the car she's driving.