Some days

We all know there are some days when things can still feel overwhelming, caring for a 10-year-old survivor. This is one of those tough times when I grasp the hidden deficits from her brain injuries, but when I feel the challenge of the hidden nature of a BI.

We have our IEP meeting this week. Nobody at school seems to grasp that she isn’t like other kids – despite their insistence that she’s fine and can accomplish anything.

She is very smart and brave and determined. She also has a left-side field cut to her vision. And she’s had brain surgeries in 2009, 2010 and 2011. A doctor’s note I read last week says her right temporal lobe has been obliterated.

Kind of an intimidating combination sometimes.

Thanks for letting me rant,

Hi Tina, I'm not sure where you live but I do understand how frustrating Special Education departments can be when you feel they clearly don't understand the disability. I am a special educator and am familiar with eval. testing and IEP development. If there is anything I can do to help out or just listen- contact me.I'm guessing your daughter is 4th/5th grade. It's one thing to be confident that a student can achieve anything. It is a disservice and illegal to not support a student with disabilities. It is the schools responsibility to remove any obstacle that keeps her from accessing her education OR puts her at a disadvantage compared to her peers. Let me know if I can be of any help. Positive vibes for you and your daughter.

My daughter is in fifth grade. Her school refuses to acknowledge she needs any accommodations because they can’t “see” her deficits. I even had an outside observer and an insider tell me that it’s clear there are negative vibes from two major school staff toward my daughter and I.

My daughter has significant emotional issues and sensory issues – stemming from AVM. The therapists she sees tell me she is mentally at a first- or maybe second-grade level.

I don’t quite know where or what to do next. I am at wit’s end.

Any suggestions definitely welcome. Thanks!

I have no great advice in this situation. I am astonished that they think someone can withstand 3 craniotomies and not have any issues. It is obvious these people have never dealt with an acquired brain injury before and that is very sad. I know you will not give up on your daughter. Sending positive waves of energy your way!

Hi Tina, My suggestion would be to stop all meetings until you can find an advocate that can attend with you. I don't know what her primary disability determination is so I don't know what types of testing may have been used to determine her cognitive (WJ-III) potential or her academic areas that were evaluated. I'm not sure what her sensory issues are but there are things that can be done and tools that can be used to address these issues. You can also directly contact the Special Education director of the school district and meet in person, they need to be able to put a face, not an ID number, to this child and her needs. I don't know how long ago she was identified but at every meeting, eval/IEP/manifestation determination meetings, they must offer you a Parents Right book. As for the negative vibes look beyond that as long as she is not being disciplined for her disability. Special Education can be very complex based on the individual child, just like AVM's. Most people in SP. Ed. love their job, want to help their students, advocate for them, and learn anything they can to help meet their needs. I know this is very hard on you as well as your daughter as some people make judgements of you, your parenting, your daughters behavior....and the list goes on. You can contact the state DOE if the district and school are not meeting her needs. These are my opinions and I hope there is something there can help you. The most important thing is to develop a positive PARTNERSHIP through her IEP team that will support and address her needs. Anything I can do to help, even just listen, let me know. Lots of positive for ya'll, hugs too.