NVLD Rise and Fight, by Lisa DalyGargano

By February 28, 2019Parents Blogs

My son Matthew is 14 years old. I am a specialist in special education and crisis therapy. At 15 months, Matthew exhibited signs similar to Asperger’s, at 15 months, I began DTT therapy within the home. His kindergarten teacher had concerns, not moved upon. Second grade, I referred him to SPED, some odd red flag behaviors, though high IQ, refused eligibility. Fifth grade preferred him again, shut down the meeting because the evaluations were filled with scoring errors and contained no observations in almost an effort to hide the red flags. His IQ is astronomical, therefore never eligible for SPED. Took his 5th grade evals to a neurologist who said the differentiation between his VIQ and PIQ scores, though within the superior to average range, substantiate he has NVLD.

Now in middle school, years of denied sped eligibility, I had to quit my job in 2013, take a part time job, so I could take him to outside intensive PT/OT.

Nine years, my son has been denied sped services due to his high IQ. Every year, I send every educator NVLD information. Seventh grade refer him to sped, they all act like I have Munchausen’s, my kids a rocket scientist. October, 8th grade, refer him again same as above. Send out the NVLD info again, they do evals, red flags throughout teacher observations of NVLD symptoms. VIQ and PIQ scores with 37 point differentiation though still superior on the high end low on the normal end of average. Outside OT/PT stating he just attained age level walking/gait skills, all other areas not age level. Green school psychologist unable to interpret the 37 point verbal/non-verbal difference in scores. Told to disregard/deemphasis on the lower scores which represent all that the right brain impairment is causing. Matt becoming depressed, once high honors, now floundering. His high IQ, becomes the reason to not find him eligible for sped, school psychologist says no need for motor therapy interventions.

Gearing up for the battle, as I have done the research. Ten point score variation significant, 20 points severe immediate intervention required. Thirty-seven point deviation God only knows. He suffered an un-noted concussion in gym class- due to coordination and the inability to express the incident. Got lost in the woods beside his middle school for hours during school supervision time, brought home after being picked up confused on the side of a busy road not knowing how to find his way back to school by the police. The school never knew he was missing. Still the district refuses sped due to high IQ. Now the battle starts because I have done the research and know better. You will be the only one who sees it. Intimate family and friends with education in the area of sped will see it, but the school will deny it. My once A honor roll child floundering, becoming depressed, knows he is not functioning like the others. Limited school employees will see it or speak out. But us parents, in tune with our child we know. Don’t let them think you are crazy or overprotective. FIGHT! It is bad enough, our kids get overlooked and denied services for years, though red flags are everywhere. I have become the rabid mother bear and won’t heed till my Einstein receives an appropriate IEP. With limited research, professionals and school districts not willing or having the knowledge to understand our NVLD children’s needs, WE MUST STAND UP AND FIGHT, SO OUR CHILDREN DO NOT BECOME A STATISTIC! At first you will think that your child has Asperger’s, but one must realize this disability is far worse than Autism. I am in the battle of a lifetime to make certain my son does not become a NVLD statistic. I know what lies before me, I worked as a SPED administrator, I see the misinterpretation of evaluation scores, and will not concede to sped workers who try to cover up VIQ and PIQ score discrepancies which solidify what I already know. I reviewed all with my son. His IQ is high enough, when we reviewed the emotional impacts of NVLD and depression/anxiety which develops without appropriate educational programming-stated mom I have that, it’s started. When my son was diagnosed with NVLD, it was not known or I was not made of the severity of this disability. I now know better. I fight for my son so he does not become a NVLD statistic. If your child is diagnosed with such, do not take it lightly. I know what my son’s future will be if I do not fight. I strongly feel that God does not hand out beautiful intelligence to these NVLD kids, without ability to judge or be unkind to others for no reason. My son has the intelligence to do great things for this world. I will not fail in the battle for getting the services he requires to cope with this disability. As parents, we need to understand, our children do not require intervention to progress or mastery of skills. They require intervention to learn how to protect themselves from a world that contains maliciousness they can not identify and coping skills to overcome the disability of NVLD. We have geniuses, who have no ability for engaging in dishonesty or ill will towards others; but can be easily taken advantage by those who engage in such. I have been given the task to provide, protect, and rise up a child who has the ability to create wonderful things to make our world a better place. In knowing, that no one other than I see the protection he requires in succeeding in doing such.

You will read the research, you will find little to no support, worry that your child will succumb to the NVLD statistic, the school district will deny your concerns, IGNORE IT. That’s your kid, you know, disregard all, protect, and prepare for the fight to get your kid the services they require to overcome NVLD. If you don’t, nobody else will, and these NVLD kids have the intelligence and abilities to  change the world for the better. As they are GOOD TO THE CORE, they do not engage in dishonesty and maliciousness.  They are Angels on Earth, we need to protect them, and help them rise to the potential they have been granted.

You will cry, you will worry, your child will get bullied and not know how to defend. You need to stand strong, rise up, fists clenched and take on the world for these gifted individuals. I see my son, I know his abilities, I know he is gifted, and I know if I continue to fight, he will make it, and do something spectacular to make this world a better place.

A gentle giant, with an IQ like Einstein, without ill will to any, limitless, as long as I rise to fight and protect him from the maliciousness of this world. A shining star of hope. I will NOT allow this world to snuff him out. He is here for a reason, as is your child. God does not grant magnificent IQ’s to those who are not placed upon this Earth to create positive change.

I’m not saying it’s easy, I read the research and cry sometimes. All I can say, is I have bestowed upon me a child who is gifted like none other. Come hell or high water, I will not fail him in ascertaining what he requires to succeed. Nine years, refused special education due to his high IQ. He’s going to high school, prior to him getting there, I am in the battle for an IEP, I’m not settling. Neither should any of you. Rise, fight, get what your child deserves, and protect them at any cost. My son is the best of the best, good to the core, he has been placed in my care, and I know what is required of me. No one, no school district will deny my boy of what he requires to overcome NVLD. My son is worth the fight and I have NO DOUBT your child is to. Don’t succumb, rise up, fists clenched, and get your kid their due. Eighth grade, Matthew wants MIT, he has the IQ and ability to do so. No one will stand in the way of my kids dream- screw NVLD and school employees. He will, he can, and I will fight for him to ascertain his dreams. Don’t stop, get bogged down in the research, feel like you have no support because nobody- YES- nobody will care or understand your child as you do. Only know, you are their greatest advocate and knock down every barrier and ignorant individual who stands between your child and their ability to gain the success they want and are capable of.

Know that you have been given the responsibility to advocate for a unique being, like no other, fight and never concede. Your child, my child- is the best of the best. An individual like no other, with the intelligence to do great things and never engage in ill will upon mankind.

I’ve got my armor on, I’m in it for the long haul, I know what is required of me, I won’t fail my son. He’s too good for this world, I refuse to fail him. I was not graced to be his mom for no reason. Those of us who have NVLD kids I must believe are specially selected to rise them up. My boy is too good to be denied all which he deserves. You feel like throwing in the towel? Don’t! Contact me! I will support you, fight with you, and help you through the process. My son is a gift, I would not exchange him for any other. As is yours! Rise, fight, overcome.

Lisa Daly-Gargano M.S.

 

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