Thursday, February 28, 2013

IEP Denied!

Yesterday we met with my youngest son’s elementary school to see if he qualified for an IEP. Unfortunately he was denied because he scored “low-average” in speech. I found it amusing that when the speech therapist did her observations of my son’s social communication skills she did so at a distance while watching him at recess. She explained in her report that my son and another student “appeared” to be interacting in positive communication based on body language observed from a distance. She could not hear what the conversation sounded like, whether my son was engaging in appropriate turn taking or if he was talking non-stop about Mindcraft Mods as he currently does every time we ride in the car, instead she was only able to confirm that his body language appeared to look appropriate.

For the clinical evaluations of language fundamentals, both the teacher and parent reports came in as being below average, but the fact that he could look at flash cards and score in the low-average range for language pragmatics was all the school needed to confirm that he did not qualify for an IEP, as they added, it appears that he has the skills, he just doesn’t always use them in real life/time situations.

The speech therapist’s observations that he keeps a distance from others at all times while moving with his class, that he behaves off task or that he had a meltdown on the playground where he announced that “This is the worst day ever!” were all dismissed under the comment that “yes he has his quirks.”

And as icing on the cake, the principal urged me that there was no real reason to create a 504 plan since we can make accommodations as we go and that 504s weren’t really necessary.

Well he has another thing coming, I will be pursuing the 504 if only for the legal protections it provides my son.

In addition, the school psychologist tried to encourage the staff to force my son to remain in the music class even if he was feeling sensory overload because in her words, “Children that have these accommodations grow up to not be ready for the real world and can’t handle everyday stress that a job would create.” I responded by saying,“My son faces stress everyday that he has to manage, just riding in the car with his brothers can be too much to bear, but he has to learn to endure it. What I want to teach my son is to be aware of his limits and remove himself from stress before he hits a girl in his class (something that he has done before), I think he has enough challenges in his day and I see no benefit in forcing him to endure unnecessary sensory overload at school.”

As the meeting came to an end, the school psychologist pulled me aside to confirm the rumors my oldest son brought home from middle school the same day, she informed me that yes, a young teacher from the middle school committed suicide the night before. Then she used this as an example of how our kids need exposure to stress so they don’t make a decision like this in their future when life gets hard.

What I think she failed to recognize is that life is already hard for our kids and removing non-essential stressors while they are young allows them the ability to learn and grow in a positive manner which will allow them to be productive individuals when they enter the “real world”. The last thing I’m worried about is that my boys aren’t facing enough challenges, I think they’ve had their fair share.

Plus, might I add, I doubt that my youngest son will choose a career where he surrounds himself with over 30 bouncing 8 year olds who are singing off-key and banging musical instruments inches from his ears.

I’m just saying...


Tuesday, February 26, 2013

An Apology...

An interesting thing happened last week. I got a call from the middle school principal who wanted to make sure I was pleased with all that they were adding to my son’s 504 plan. After going through the list he paused and said, “I’m sorry if I rushed you in our meeting, you know those teachers can talk forever and I wanted to keep them moving.”

I responded, “Well I appreciate your apology, but I have to tell you that I felt dismissed by you in our meeting.”

The principal again said that he was sorry and that he had to keep his teachers from talking too much. Which was interesting being that the teachers barely said anything, but regardless I think he was apologizing in a round-about way after the way he treated me.

From there I jumped on the opportunity to express how I felt about a number of things. I explained that he needed to work harder at making my son feel like they have his back and are working at keeping him safe in the school.

I also pointed out how I felt the grades he received didn’t reflect his true capabilities, which the principal acknowledge saying, “Yes, I also thought something was amiss when your son had poor grades on homework but an A on the test. I asked the teachers 3 times if his grades were a true refection, but they all agreed it was.” In the end he agreed that he did need to have a talk with his teachers about this and make sure that in the future they do a better job.

At the end of the call I told him that I was angry with his final comment about my son being fine at school so the problem was at home. I explained that the school was part of the problem because his triggers were being cause by the school so it was my job to address these triggers, which meant that him, along with his staff needed to be part of the solution. He seemed to agree and came across willing to move forward in a positive direction.

I have to say, it wasn’t the best apology, but at least I had the perfect opportunity to express how disappointed I was with him and our 504 meeting and reiterate what I expected in the future.

I’m also encouraged because my son shared that the “difficult” teacher was now treating him differently in class, he’s been kinder and has been helping him more with classwork. All this started after the dreaded 504 meeting.

As my husband reminded me after the meeting, “I know that you feel like all your hard work was for nothing, but you never know what impact you may have had. Maybe he’ll think about our family and be ready to address things differently in the future or maybe one of the teachers will see our son with a new perspective and be ready to help him.”

Once again, my husband has shown that he’s a wise man.

On another note, tonight my son and I visited a charter school in the area, we’re trying to keep our options open as we carefully move forward, one step at a time.



Thursday, February 21, 2013

“I Sued My Son’s School for an IEP.” Interview with a Courageous Mom

Recently a follower shared her story with me about suing her school system to get an IEP for her son. She shared that her school denied her son an IEP because he was (academically) performing above grade level, therefore he didn’t qualify for any services. 

I know that her story is not unique and some of you may find yourself considering this same legal action with your school. Thankfully this courageous mom has allowed me to do an interview with her with hopes of helping others. I think you’ll find it very eye opening!

* * *

1. What grade is your child in and what is your child’s diagnosis?
My son is in third grade and has multiple diagnoses. ADHD-combined type, Generalized Anxiety Disorder, SMD Severe Mood Dysregulation, Nonverbal Learning Disorder. (SMD will be in the DSM-V, it's basically bipolar without mania...)

2. What type of school does your child attend?
Public.

3. What challenge did you face with your child’s school?
In kindergarten I knew there was something not right. He was not behaving like himself. He was sometimes smacking other children, he was fidgety, he was becoming upset when it was time to go to school. I asked for a meeting with the principal and his teacher. The principal actually told me to medicate him. In those words. The teacher said he was fun and loving, but had no self-regulation and that he was taking 20% of her time (she had 25 students).

First grade was awful at first. His teacher would not listen to me when I tried to explain that silliness is a clue to his being nervous, she said "he's one of the least nervous children I've ever met!" She was a yeller and one time while screaming in his face while holding him by the shoulders (this was reported to me by another adult who was present at the time) he kicked her in the shin so she'd let go. Needless to say, that was not OK, but she then sent a threatening email to my husband and I, explaining that she'd called the non-emergency number for the police and that if our son ever touched her again, she'd be pressing charges for assault. She didn't include the principal on this, and even after this, getting our son switched to another class was like pulling teeth. I also saw this teacher ask him for a hug one time and I calmly stopped him and told him he wasn't allowed to touch her.

His next first grade teacher was wonderful. She was nurturing and helped him to see what his strengths were and to communicate clearly and calmly with him. He finished out the year with some bumps, but much more successfully. Second grade was rough. His teacher didn't like him. She wasn't nurturing. She didn't dislike him, but she wasn't willing to do what was necessary to help him succeed. At one point in second grade there was a long-term substitute teacher coming in. On the first day with her, my son tried to use a flash pass...to get a drink of water because he was getting overwhelmed and needed a break. She said no. He didn't know what to do, but had been told that if he ever needed help he could go to the principal. So he left the room to go to the principal and the long term sub tried to direct him back into the classroom, putting her hands on his shoulders. He hit her to get her to let go of him.He is very sensitive to touch when he's agitated/anxious, and the front of his 504 plan had a "do not touch him when he's agitated" note on it. I asked why she'd touched him or not followed his 504 plan and the school said they'd forgotten to let her know that he had a 504 plan. So they suspended him even though they violated the law by not communicating the plan to the teacher. I appealed it and the response of the school board was that our school had been "too easy on him and should have suspended him for more days".

In second grade I received a phone call from two of his friends who said they spent every day at recess trying to keep two boys from harassing him. I asked the school about it and their response was "yeah, we've been trying to get them to leave him alone for six months...sometimes we have to get in their faces, but they just won't leave him alone." I filled out formal bullying paperwork. They left my child alone after that, but I was harassed by the other children's parents, very verbally for months.

The principal of the school his first two years was beyond negligent. She actually told me one time, "I will not call you anymore. I don't like to speak to you about your son because you are always so sad when things are hard for him." She put that in writing! The new principal after that was much better, but still out of his league when trying to help my son. He really did go out of his way to try to help my son...and they built a great rapport, but it wasn't enough.

In kindergarten, at the end of the year, I requested a 504 plan. I was denied. In first grade, I requested an IEP and got a 504 (only after a letter, written by an attorney stated my son's needs clearly). The 504 was not working. I requested an IEP in 2nd grade. I was denied but they said they'd think about it. The problem is that my son is academically gifted...working more than two grade levels above his current grade. So the school system said that because his disability wasn't impacting his education (evident by the fact that he was not lagging academically) he didn't qualify for an IEP.

Throughout all of this, we were denied Occupational Therapy because he didn't have an IEP. He was having a hard time with the mechanics of writing, which would often devolve into him refusing to write or him having a tantrum/panic attack. So we paid, out of pocket, for private OT weekly for two years.

**I am in no way excusing my son's slapping or hitting anyone, ever. I include it to be absolutely honest, but want to be clear that we did not excuse it in any instance, we just tried to mitigate the situations we knew were likely to result in a physical response from him.

4. How did this affect your child? 
He began to hate school. He had panic attacks. He became defensive and started to be angry all the time.

5. How did this affect you?
Every single day while he was at school, I would wait for the phone to ring. I literally would dread it. It was physically exhausting. When the phone rang, I would have to either go to the school with my now three year old twins or leave work (I work part time) to go talk with them. It was also so hard to walk the line of how to handle things with him. He'd hit someone at school, which in no way is OK. But the adults who were supposed to be helping him navigate situations that were hard for him had been negligent. How, as a parent, should I handle that? It led to a ton of stress and self-doubt.

7. What steps did you do before legal action?
I volunteered a full day each week at the school. I figured if I was there and able to lend a hand, maybe it would help. You can't change something if you're not willing to try to change it yourself, right? I spoke frankly, repeatedly, with the school and tried everything I could think of to help.

8. What was the straw that broke the camel’s back and made you seek legal action?
My son was enrolled in a study at the National Institutes of Health, and they looked at his school records and said that it was ridiculous that he didn't have an IEP. Then I received his standardized test scores/reports, his final report card, and his official end of school year commentary (from his teacher) unsealed, from the parent of another student who'd been told "you see her sometimes out of school, right? Can you give these to her?" The gross negligence of that one act put me over the edge.

6. What legal action did you take?
I hired a student rights attorney. We had an initial consultation where we took my son's school records with us so he could review them. He pointed out flagrant violations of the Individuals with Disabilities Education Act (IDEA) and violations of various county and state laws. He said we had a case to get our child an IEP and into a specialized program. He also recommended that we hire a Special Education Advocate to help us design the (presumed) IEP.

8. Was it class action or individual?
Individual.

9. What steps did you take to accomplish the legal action?
We gave retainers to both our attorney and the Sp Ed Advocate and requested an IEP meeting, informing the school that we'd retained counsel.

8. What challenges did you face in taking legal action?
Personally, it made me horribly uncomfortable. I am naive in believing that if we all just do our part and act responsibly, we can work together to help one another. To have someone fighting and being caught in very contentious meetings where people were picking apart my son was excruciating.
Also, the school system then sent in their lawyers and they got ugly. Downright ugly...even told us that they were on staff and had unlimited access to their lawyers, did we have the same?

9. Did it cost you anything?
Overall we spent $17,000. That does not include the days we had to take off of our jobs to be at the multiple meetings. We are not rich.

10. How did the school respond to your legal action?
They pushed back. They said that the tests we'd had done (neuropsych, academic achievement) weren't sufficient. Never mind that the person who'd performed those tests was a Chief of the National Institutes of Mental Health. We'd asked them for testing for three years and been denied, but suddenly they wanted to do tests to see what our son was like. So we had to wait a few weeks for them to test our son. My son had panic attacks sometimes when going to school, but they said they could only do the tests at the school. He was so nervous and panicky before the two days of testing...which turned into five days of testing because they said he was so nervous they weren't sure he was performing according his potential.

11. Did the legal action cause a problem for your child at school? Did they treat him differently?
I was home schooling him at the time. Once I began legal proceedings, once that straw broke the camel's back, I decided he would never go back there.

12. What were the results of your legal action?
We got him an IEP. He is now in a program for children with emotional difficulties. It is not the program that we asked for him to be put in. It is working out well, but it is still like putting a square peg into a circle hole.

13. What were your feelings about the end result?
Overall I am happy that he is in a program that he doesn't dread going to each day. He is still not in the program that would most benefit him, but it is significantly better.

14. How has your child benefited from your legal action?
Honestly he knows there was a lawyer involved, but we didn't tell him any of the details of what was going on. He didn't need to know that the people who are supposed to be helping him to grow into a more well-rounded and better educated person were actually trying to work against him.
So he's benefited in that he's in a program that he doesn't dread each day. That he's around people who want him to succeed.

15. Were there any long standing changes at your school due to the legal steps you took?
We're not there anymore, but talking to many friends who still have kids there, the answer is sadly no.

14. If you had to, would you do it all over again?
Yes, but I would have done it much much earlier.

I just want to add that my son is in a school system that is often listed as the #1 public school system in the nation. We have stringent academic goals and great resources for children that are academically behind. It broke my heart that the ONLY emphasis in the system is academic. As long as kids are performing on level, academically, they are categorically denied services because if they're at grade level, it's said that their disabilities don't impact their education. Anyone who needs emotional help is just swept under the rug. Special education has been cut drastically over the past decade in our system and it is a shame. I have talked to so many other parents of children within our school system who have dealt with the same thing we have. So if it's the #1 system in the nation, that's just sad.

* * *
Thank you so much for sharing your story, I admire your courage and dedication. Raising a child with mental health issues is hard enough, but to take on a school system that’s stacked with lawyers is incredible. Way to go mom!

If you have any questions for this mom, please leave them in the comment section below. She will answer them through email to me, then I will post them for her as a comment to keep her anonymous.


Tuesday, February 19, 2013

Raising Adam Lanza on PBS

This week PBS is doing a series some of you may be interested in. One episode focuses on who Adam Lanza was and details about his life. I know these shows exist because everyone wants to know what caused a child to become a killer. What I believe we will all find is that there is no singular reason, it’s a perfect storm that unfortunately hurt so many.

Check out the series for your local showtimes at PBS’s website:
http://www.pbs.org/wgbh/pages/frontline/raising-adam-lanza/


Sunday, February 17, 2013

Am I Expecting Too Much From the School?

Friday I had my 504 meeting with my oldest son’s middle school. It was dreadful in every way and I left feeling heavy with disappointment. Are my expectations too high? I thought if a child was struggling academically, the school would take steps to help them overcome their challenges, not walk around them.

The meeting started with a thud after I passed out the brochure, Educating the Bipolar Child. I jokingly stated, “Don’t worry, I don’t plan to read through the entire brochure, instead I’ll just highlight a few items.” From which the principal responded in a very serious tone of authority, “If I have anything to do with it, you will NOT be reading the entire brochure.”

Hmmm... feeling the love already.

After discussing my son’s diagnosis and how it impacts him at school. The principal, asked his staff, “So do any of you see these behaviors in this child at school?” One teacher chimed in, “Well he does like to cover his head and lay his head on his desk.” The principal responds, “Yes, but it isn’t much, right?” The teacher responds, “Actually it happens a lot.” The principal moved on without comment.

When I stated that my son needed extra help in math and writing, not just accommodations, I was once again met with resistance because, “His last year’s Star testing showed him to be in the normal range.” I pointed out that he has received all Ds and Fs for the last month in math, with the exception of an A on a test that he did with the study skills teacher’s assistance. In response, the principal asked his teachers if their grades were a true refection of my son’s abilities—everyone nodded, “yes”. But when pushed further, the math teacher admitted that without the accommodations he was receiving, he would be getting an F in his class, instead of the current passing grade of a C.

The english teacher also admitted that he struggled a lot when it came to writing. I then expressed my concern by pointing out that his sentences were incoherent on his most recent draft essay. The study skills teacher responded by agreeing that he did require a lot of her help. Which really meant she was writing part of his paper. I know this after reading his incoherent paper, the following day, I read through it again and it read entirely different. When I asked my son, “Did you write this?” He respond, “No, my study skills teacher did that.”

The same thing happens in math, he gets a lot of hand holding. Yes it helps him get a passing grade, but is he learning? How will he ever pass the high school exit exam if he is not learning these concepts now. It feels like they are more concerned with finding ways for him to pass the class instead of actually learning. Is this the best the school can do or am I expecting too much?

I then explained a list of stressors he’s experiencing at school that leads to emotional break downs at home, such as bullying, an inconsistent teacher, and sensory issues. Their answer to the bullying was that my son should learn to walk away whenever he is harassed. When I explained that he didn’t feel comfortable leaving the safety of his friends, to sit alone, the school psychologist chimed in and said, “That is what he needs to learn”. I asked, “But what if he can’t do it, what if it triggers too much anxiety (as it has in the past) what is your answer then?” She said, “I don’t have another answer.”

None of the other stressors were addressed, instead the principal stood up and said, “I appreciate that you have so many struggles with your son, but it appears that he is doing fine at school, I see him on campus and he looks happy, so the problems are only at home.” Then he gathered his things and walked out of the room.

This follows a week where my son was so overwhelmed over a math assignment that he started talking about wanting to end his life because he’ll never learn how to do it.

How do I help my son?




Thursday, February 14, 2013

Love and Surprises

Today my oldest son went back to the field for some alone time, instead of his cape or digging tools, he left with his bible so he could spend some time reading his bible out in nature.

I love how my boys still surprise me after all these years!

Happy Valentines everyone, and to the love of my life, thank you for everything!


Monday, February 11, 2013

Tough Teachers, Bullies, and the Battle at Middle School

Tonight I’m preparing for a meeting with my oldest son’s school. Things are getting worse and one of his teachers has refused to comply with our agreed 504 plan. On top of that, my son had his lunch taken from him (before he could eat) on one day and a soda purposely poured over it another day last week. After the vice principal pulled up the video, proving my son’s harassment, my son was told that the next time these boys mess with him HE should get up and move to another seat. I don’t know if the bullies faced any consequences or were just scolded for their behavior—the laws prevent us from knowing either way—but the fact that my son was told that he should leave the safety of sitting with the only friends he has at this school and sit alone somewhere else was enough to cause a melt down at home. As he said, “There is NO way I can leave my friends and sit alone!”

As you can imagine, I ended up in the principal’s office expressing my frustrations when he stopped me to ask, “Do you think he’s depressed, or do you have an actual diagnosis?” I was stumped by this questioning since we provided a psychiatrist’s note listing his mood disorder symptoms at the beginning of school. I quickly responded by exposing his current diagnosis of Bipolar NOS and shared details of the symptoms he faces day to day. The principal seemed shocked and even waved his hand towards me and said, “Wow, but you all look so... normal.” Not knowing how to respond I said, “Well, yeah...” (trying to imagine what he thought a family like mine would look like). I then proceeded to explain why triggers such as bullying are so detrimental to my son’s stability. From there he softened and said, “I honestly can’t imagine what you’re going through as a parent.” He then encouraged me to share these details about my son’s symptoms in a meeting so that the other teachers would be more understanding of his challenges in school.

So that’s exactly what I plan to do! I’ve decided to start the meeting by presenting a brochure called, Educating the Child with Bipolar Disorder that The Balanced Mind Foundation provides online. I will outline what bipolar disorder is and how it affects his day to day life and ability to learn. I hope to educate these educators about my child so that we can come together and work as a team.

When we established his 504 plan we avoided the label “Bipolar Disorder” to lessen any stigma he might face. But now we’re moving full steam ahead and are going to use his current diagnosis of Bipolar Disorder NOS. At this point we have to take this step with hopes of making things better. If not, we’ll move on to plan B, maybe a new school.

Tonight I’m frustrated, angry at the non-compliant teacher and overwhelmed with the amount of information a parent has to process, investigate and prepare in order to preserve our child’s rights for a fair and appropriate education.

Why must it be this hard?


Thursday, February 7, 2013

Why HIPAA Laws Frighten Me!


Visit NBCNews.com for breaking news, world news, and news about the economy

This Today show clip shows another reason why the HIPAA laws frighten me. Once our kids turn 18, we won't be able to manage their illness, because the laws won't allow us. For some this may not be a big deal, but considering that a lot of kids with mood disorders may not be ready for such an important responsibility, this is a frightening transition. I only have 6 years left to help my child manage his illness. After that, my hands are tied.


Tuesday, February 5, 2013

One High Tech Mama Bear!

Recently we implemented a walkie-talkie system to allow our oldest son a little freedom playing in a field nearby our home. I believed this system was more for peace of mind than anything, but today I was proven wrong when I got the incoming call:

“MOM, COME NOW!”

I quickly jumped to my feet as I got a detailed description of three boys who where harassing him. I charged out the front door to my son’s field location to see 3 older boys on bikes giving him a hard time.

As a gym rat, I have the ability to move faster than most kids expect and in a quick moment I was chasing these boys down. When I caught up to them, they quickly tried to play down their actions, but I went all “Mama Bear” on them, yes I was yelling and even pointed out that they were pathetic for picking on a younger kid.

Be warned teenage bullies, this Mama Bear is running a high tech operation!

* * *

If you’re interested, we got our Uniden long-range walkie-talkies at Target for about $20, best money spent!






Sunday, February 3, 2013

Education and Services, an Uphill Battle to Nowhere

Sometimes it seems like an uphill battle to nowhere. I’ve been talking to the elementary school regarding my youngest and I’m told,“Even if he’s diagnosed with Autism Spectrum Disorder, we do not have to provide services unless he’s performing 2 years behind.” When I ask about his poor handwriting and if he would qualify for occupational therapy to help improve his writing abilities, I’m told, “He can’t get access to occupational therapies unless his speech is showing significant delays, which remember, he needs to show that he’s 2 years behind.”

Then I talk to my oldest son’s school and I’m told, “Your son’s handwriting is pretty poor and we believe it may be having an affect on his ability to learn his flashcards because he has trouble reading his own writing.” I respond with, “Can we help him improve his handwriting skills so it doesn’t impact his education?” The school responds, “No he’s too old to help now, we can only give him accommodations at this point, so we’ll try to avoid having him do handwriting.”

So let me get this straight. My oldest is too old to help, yet my youngest is young enough to help, but his speech is too good, so he doesn’t qualify for handwriting help.

Hmmm... sounds like a bunch of crap if you ask me. Why don’t they just say what they really mean.

“We don’t have money in the budget to help your child.”