The System is Failing Our Children

How is it that the systems put in place to help or protect our children are actually failing them? 

    We live in Pennsylvania. Liam was diagnosed on the spectrum six years ago. (In the years following, many diagnoses would follow.) At that time, our state case worker suggested we file for SSDI. We have filed, been denied, appealed, been denied, on and off for those six years.

    This year when we went into our caseworker to review his benefits we were told to file again. We called the SSI office and asked for paperwork. In the meantime, I get this letter in the mail.

   Okay, so first of all, what in the heck is the DAP and why in God's name have I just now been informed of it? We've been battling the state for Liam's rights for SIX years. All this time the Disability Advocacy Program of Pa never once stepped in. Not once.

    Suddenly, here they are, telling me if I DON'T file for him that I AM IN VIOLATION. What about them? As you can see, they clearly state that "Liam is considered a person with Disabilities." Yet, year after year, case after case, this very state denies him.

    Now let that sink in.

    I would be in violation for not filing, but they aren't for denying? How does that work? So last night, I spent a couple more hours filling out the same forms, and booklets that I have done in the past. All for them to tell me he isn't "disabled enough."

    Okay. Then why can't he attend a traditional school? Why are you, the state of Pa, helping to pay for me to not work, in order to care for, and to school him myself? Why does his school have him in numerous therapies for Speech, OT, and PT. How can you deny the fact that NUMEROUS doctors have diagnosed him with so many conditions, three of which automatically qualify him for SSDI?

    Why is it that systems put in place to help our children, aren't. (Remember, we've been filing for six years, and just NOW we're being told there's an agency that helps with that.) Yet, the only help they have given is to tell me I could be in violation. Gee, thanks Pennsylvania!

    Our children fight so hard to find their place in this world. They fight to over come their obstacles, and to face their challenges. As parents, we help them with these battles. We also try our very best to make sure all of their needs are met. Yet, the systems put in place to help them, don't. Instead they fail them, and us as well.

   

   

IEP Meetings

    IEP meetings. Almost every, special needs parents' apple of discord. Why is it that so many families have to fight to get what their child needs AND deserves? I mean, these people go to school for a career, in which they are to help mold and teach children. Why is it that they seem so adamant to make us fight to have their needs met?

    Those of you who have followed our journey since the beginning, know what we went through with our local brick and mortar school. You also know why I pulled my son, and home/cyber school him. (here's the skinny: By day 4 of kindy, Liam quit speaking, eating and only cried and rocked. His shirts were ruined from chewing. Bus came on morning 5 and all hell broke loose. We pulled him. After a week of silence, he opened up and said the teacher had placed him in the hall for most of each day. The lunchroom smells made him sick and the noise in the gym made him cry. NO ONE told me! We started meetings. They argued that he wasn't autistic ("a clinical dx is NOT the same as an educational dx.") I ended up getting the State involved. They then decided they should give up the fight. I then told them to shove it, and home schooled.)

    Fast forward to 3rd grade. Two cyber schools later. My son gets speech therapy, occupational therapy, AND physical therapy. The three T's that the local school fought so hard to not give him. He also gets in home behavior therapy. (Which has decreased in the last year.)

    What makes me so angry is that, as his mother, I could see where he was lacking. Yet these "professionals" kept arguing with me. It took YEARS to get someone to listen to me, to get the right evaluations by QUALIFIED professionals. (I say qualified because I even had an OT outside of the school district, tell me that he didn't need OT or PT. Yet, here we are. With new therapists, that CARE to do their job correctly.)

    I guess my point of this post is this: As a parent, YOU know your child. You know what they need. You know them better than anyone else. Don't ever let the school, or "professionals" dismiss your concerns as trivial. You keep fighting. You go over their heads. If you still don't get anywhere, you go over that person's head. You are your child's advocate. You put on those proverbial boxing gloves, and enter the famed fight club, and you don't give in. You get what your child needs and deserves.

    Then you have a libation, and pat yourself on the back. You are a special needs parent, and when needed, you are a force to be reckoned with.