Educate and Advocate

I thank God for Early Intervention every day. I know it was the key that helped to bring my son to where he is today.

Before my son got diagnosed,  I was working as a teacher’s assistant in a special education program. I learned about Early Intervention during that time.  I worked in a kindergarten through the second-grade program.  Some of the students came to us some from early intervention and some did not.  There was an obvious difference in the kids who had EI and the ones that did not.

Early Intervention (EI) gives children the head start that they need to “catch-up” with their peers.  It is scientifically proven that the brain is still mailable from 0-5 years of age.  Therefore, you can create a significant positive impact on a child’s future.  I personally saw the huge difference with my son from the beginning of EI to the end.  He was completely ready to be in a school program. You can almost look at it like building a house.  You have to start with a solid foundation in order to build up from there.  You need good materials and tools in order to build that foundation.  The occupational therapy, speech therapy, physical therapy, ABA therapy, and speech group were those tools and materials for my son’s solid foundation.  We are now at the point that we are building on top of his EI foundation and starting with the “first floor” of his life.  Yes, it is  A LOT of work but anything worth having is worth working towards.

The steps of starting  EI  is typically your pediatrician makes the referral for your child to be evaluated because some “delays” are noted.  However, that is not always the case.  In my situation, it was me the was noticing the delays, and really as I have stated before the “signs” were not so noticeable.  I could have easily chosen to say let me wait and see if he “outgrows” this or “he is a boy and they develop slower”. You as the parent also have the right to request an EI evaluation.  It is a tedious process but proven to be necessary.  You fill out lots of paperwork and then various therapists come to your home to do an evaluation process.   My son was 7 1/2 months old when we started the process so it was me that was doing most of the talking.  They observed him and tried to see if he was age-appropriate in terms of his milestones.  The “truth” is I was told by people in the field if I wanted my son to receive services I would have to “exaggerate” his delays.  I am not one to lie but the benefit outweighed the exaggeration of “truth”.  The paperwork processing took a few weeks and then I had a meeting with the “officials”.  I had to sort of plea my case and talk about why I thought EI would benefit my child. It was at this meeting that I found out he was approved for OT and PT.  I was happy just to get started and the rest of the services soon followed.

What I learned is that I was going to have to be my son’s voice.  I was responsible to advocate for him and NOTHING would just be given to me because he needed it. We have this “wonderful” system in place to help the children that need it..but you have to ADVOCATE hard for everything.  I came across a few “city officials” that had no clue what they were talking about.  All they cared about was not giving services out so money would be saved.  I NEVER allowed that to be the case.  My advice is to EDUCATE yourself…go into all of your meetings PREPARED!!  You must act as though this is your career and losing your job counts on your job performance.  As a parent, you also have the right to adjourn a meeting if you don’t like the way it is going and never ever sign anything unless you are in agreement.  Another thing to reflect on is “you get more bees with honey”.  It is not necessary to be angry or shout.  Represent your self in a very “professional”, but not leaving until you get what you want manner.

My son was 18 months and he received his PDD-NOS diagnosis.  I thankfully had experience working with children on the spectrum but when its your own child it is a completely different ball game.  The thing I was also experiencing when your child is “high functioning” you are sort of walking on a fine line of what services they will receive.  I had many people say “your son talks”, “he is social” therefore he is fine. Yes, I am thankful he is doing as well as he is.  We truthfully had a solid foundation to work with and just kept building up from there.  However, if it were not for the fact that he received 36 hours of EI up until he was three and a half years old.  I know he would not have made as much progress as he has.  The “officials” would read his test scores and say he is doing fine.  My response would be “Yes he is…however we still have work ahead of us”.  My example would be… you going on a road trip to Niagara Falls.  Do you stop driving 50 miles away from there just because the scene is pretty?  No!! You observe the beauty around you and keep on driving until you reach your destination.  My son at this point could not function successfully in a typical Pre-K classroom by himself.  Therefore, I will not stop ADVOCATING for him until I know he has what he needs.  This completely holds true for any child, special needs or not.  It is our role as parents, to bring the best possibilities to our children.

In retrospect of the past three years, I know in my heart that Early Intervention services was the key that opened up my son’s successful future.  I also know how much time my family had to dedicate to this.  I mean it was 36 hours of people being in our home a week.  I would do all over again in a heartbeat knowing what I know.  Educate and Advocate pass it on.

Margarita Philippou

High Functioning Family