Wisdom//

A Mom’s Experience With Our Broken Special Education System

Being a parent to kids with special needs can feel stressful — but let's encourage each other to stop the judgment and the guilt, and shower our children with love.

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My personal journey commenced over 20 years ago in an attempt to navigate our broken national special education system, as a novice mom. I have two sons each diagnosed with A.D.H.D. and learning disabilities. Both boys are characterized as twice exceptional, highly gifted and learning disabled — meaning their intellect level is over 140, but their reading and writing levels are in the 67-70 range. An average intellect level is 100, making the discrepancy between their intellect level and learning ability quite significant. My boys were lopsided in terms of learning.

Jonathan has severe dyslexia and Omar is challenged with depression, writing, and reading deficits. When both boys were born, they looked so beautiful on the outside that there was no way of seeing their internal struggles. They appeared to be such happy boys. My sons were beyond their years in intellect and maturity, but when I looked at my little boys, ages 5 and 7, I could not see that. Back then I had no idea what A.D.H.D. or learning disabilities were. 

Both boys were placed in a private school (Jonathan 5 years old and Omar 7 years old). It was the private school teacher who told me that Jonathan has some learning problems and the private school could not offer any services to address those problems. She also told me, and I quote, “You are your son’s best advocate, and nobody will know your son better than you.” Little did I know how valuable those words were at that time in my life. 

She recommended I transfer him to a public school. I ended up placing both my sons in a public school in the hopes of getting help for Jonathan and keeping the boys together. I thought that the public school and the teachers will have all the answers since that is their expert area — teaching children. For sure they will know how to help my Jonathan, because they are in the business of “teaching” and they have the resources the private school did not.

The public school told me Jonathan needed an assessment; a psychoeducational assessment, to be exact. It was supposed to test his social, emotional, behavioral, cognitive, and academic domains to obtain a baseline as to where he falls in all of these areas. I agreed to everything they recommended, because at that time I did not understand any of this and they were the “experts.” Jonathan was tested and the school held an Individual Education Plan (I.E.P.) meeting. According to the Individuals With Disabilities Education Improvement Act of 2004, an I.E.P. is a legal contract between the schools and the student/family. Back then I did not know that an I.E.P. was a legal contract.

The Individuals With Disabilities Education Improvement Act of 2004 is a United States law that mandates school districts have the “affirmative obligation” to seek, identify, and asses children with any and all disabilities.

After I received a copy of Jonathan’s psychoeducational evaluation report, the school invited me to an I.E.P. meeting to review the report and see if he may qualify for special education. That first meeting was extremely intimidating because there were approximately seven to eight school district employees in that room with me. I sat there and listened to what everyone had to say about my son. It was very emotional hearing all the negative things they said. His reading ability was in the 67 range, meaning he was considered to be mentally retarded in the area of reading. He actually had dyslexia, but the school would not identify it as dyslexia. I was told he is a child who is unable to read and needs various supports. 

In those days mentally retarded was an accepted term to use. Today we refer to individuals with significantly low scores as “intellectually disabled.” Now, you ask why a twice exceptional child would be considered “mentally retarded” in the reading ability area. Well, since he is highly gifted with an I.Q. that is off the charts, that question makes sense. The issue is Jonathan was approximately 6 years old by the time he was tested, and although his I.Q. was very high, he was unable to read and access the same academic curriculum as his peers. Imagine being 6 years old, highly intelligent at such a young age, and you cannot read. Yet you see your peers reading and moving forward with their schoolwork. You are trying to fit in but cannot. Now you have all these emotions of feeling stupid because you cannot do what your peers are able to. Your parents do not even understand you.  

This is what Jonathan struggled with his entire schooling from elementary through high school. As a mom I tried everything to help my Jonathan. There was not one stone I did not turn over looking for an answer. There were days that I sat on his bed at 2:00 a.m. crying my heart out because I felt (1) guilty for having birthed him this way, and (2) helpless because nothing I was doing was benefiting him the way he needed. 

The worst feeling in the world is for a mom to feel guilty about the way her child was born. It took me a while to realize that I have nothing to feel guilty about because my son Jonathan, along with his bother Omar Jr., are God’s greatest gifts to me. They both were made wonderfully and beautifully. I could not see that because I was too busy comparing them to their peers in school, and not accepting them for whom they were born to be. I continued researching and looking for answers to help both my boys where I was able to obtain help for them, but at an astronomical cost. I learned to love both my boys with all the love I have to give, and even more love than I can give. That sounds like a difficult thing to do, but it is not. It is very possible.

Written by Raja Marhaba

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