There hopefully comes a point where as a parent you understand that whatever special need your child has, that you stop looking for someone or something to blame and you address the circumstance that already exist. This is not to say that if you believe medicine, vaccines, environment etc. caused the circumstance that you shouldn’t advocate for the cause but the child has already been affected and needs your voice and energy as well. I definitely searched far and wide for what or who I could blame even if it meant blaming myself. If I could just have a reason as to “why” it would all be okay. Unfortunately sometimes the why never gets exposed.
I had a really close friend of mine who is at the beginning stages of her journey advocating for her son and she told me that she distrust the special education system. I understand her frustration, I been there too. I thought all the help and everything that was needed would automatically be given once the need was clear. When I started seeing the very broad gaps between by son’s need and the very narrow access to the solution my hope became distress.
There’s this saying I always hear “you teach other’s how to treat you”. I believe especially with special education, you teach people how to treat your children. When I think of how to bridge the gap between us as advocates and the educational professionals I think of how I bridged the gaps in my own journey.
The very first thing I did when I started advocating for my son was build relationships. You must learn you can’t do this alone. It really takes a village. Let the education staff know that you are all in and not expecting them to do all the work. I specifically told my son’s new IEP team when we moved to Washington that “I have one child and you have over four hundred and if you have information that will help me help him or help you help him then please share and understand some of it I will welcome and some I will not.” I don’t need people who are educating my son afraid of me going off on them but they do know I have expectations and they respect every one of them and I rate that by actions. Also the relationships shouldn’t be forced. My son had an IEP team in one school that just couldn’t handle me being so involved and felt like I was stepping on their toes because of certain things they were doing that I didn’t agree with. They knew those things weren’t providing structure but no one ever confronted them. I then addressed the head office of the district where I formed another relationship with the director of Special Education in the district. I approached her with a heart of a concerned mother not with an ego driven attitude.
While building those relationships you must locate the missing links in your child’s progress and inconsistencies, which brings me to the second thing I did to silence the idea of they were the enemy. We must bridge the gaps. We are the “gap fillers” for our children. When we see things that are not being done it doesn’t automatically mean that the school staff is against us and are slacking on purpose. We slack on things as parents with our own children, not on purpose but stuff happens. So I pretty much try to make sure my son’s IEP team stays on task that includes me. His team stays on task pretty well but some things I just have to remind them of. As advocates we are the primary link.
In order to build and maintain positive relationships, maintain your position as the primary link in bridging the gaps, and to continuously see progress you must stay consistent. Consistency is the cherry on top. No matter what it looks like you have to stay diligent. Keep trying! There should never be end all be all. My son is in the third grade now and this is the first year that I haven’t had to hold my breath waiting on the next phone call or email from school. He has been in many programs, I’ve went through some parenting programs, he’s been to quite a few counselors who’ve tried many different old and new strategies and programs. I even had him try two different medications when I thought I was at the end of my tolerance level. Just be very careful about saying what you would never do. Medication was my “never” until rock bottom hit and I couldn’t give up on my son so I had to give up on the idea that medication wasn’t an option. Medication wasn’t my son’s open door but it sure did release me from the guilt of not trying everything.
They say “life is not a sprint but it’s a marathon”. Well advocating is no sprint either. Depending on your journey, your marathon may be longer or shorter than the next but it doesn’t make it any less or more important. Get your head in the game, strap on the boots and stay focused. Our children are not crack fillers, don’t let your child fall through the cracks.
In life we tend to have boundaries or in other words, things that we will not compromise on. For me I draw the line with my core values. My core values and my faith are pretty much concrete. Everything else in my life tends to be negotiable. One thing that I thought would never be negotiable is how I would raise my kids. By the time my son was four years old, I realized that the concrete line that I created for how I would raise him would quickly become a line in the sand. The line in the sand could and would easily disappear depending on how the tide came crashing in with his social-emotional difficulties.
In the last five years advocating for my son, I’ve come to realize that you have to be flexible when advocating for any child but especially children with special education needs. I’m aware that my interpretation of drawing the line in the sand may seem a bit unstable. Every year the school is mandated to do an annual check on the child’s IEP and to adjust the IEP as needed per the child’s progress or decline. The idea of managing my son’s difficulties and having the same expectations but not willing to adjust with his progress or declines seems to be more about my ego than about his progress. The line in the sand has allowed me permission to adjust so that I can not only be advocate but also a student and mentee of other avenues, programs and resources.
I am very grateful that I finally allowed myself to change and not to resist the alternative ways to handle his social emotional difficulties. I could never had imagined that I would have to put my son into counseling at the age of four. He was a part of many programs that have taught him how to manage his responses to situations. I have went as a far as having my son admitted for a psychiatric evaluation at the local children’s hospital for some support which ultimately landed me a spot in the amazing and I mean amazing parent program called The Incredible Years. The Incredible Years program is a sixteen week program that I went to every Monday for two hours with other parents who have the same social emotional difficulties with their children. The diversity in economic status, race, cultural and family dynamic was amazing. This program www.incredibleyears.com gave me so many different ways to productively and positively parent according to his personal difficulties which were quite a ways from the traditional and concrete ideas I originally had for parenting. These alternatives ways taught me to structure my son’s needs based on personal circumstances and not on tradition or how I was parented in a way that really works for my son. Allowing myself to create that line in the sand and to be okay with it being blurred quite often never made me compromise my concrete core values or my faith.
Be honest with yourself as an advocate on what is or isn’t effectively working. Sometimes we have to really take inventory especially as parents because we have this pre-notion idea of how we are going to parent our children and how they are going to behave and when it goes against our “best” ideas and wishes we take it personal. Take a look at your child as an advocate from the outside looking in and see what areas you might need to forego that concrete line and allow for a little “sandy beach” for your line in the sand and be ready to adjust.
“Drawing a line in the sand is more about setting an expectation but being flexible and less about non-negotiable boundaries; You have to be ready and willing to adjust when the tide of reality comes crashing in to blur the lines. Non-negotiables belong in concrete.” Nicole S.
Giving up the idea that my situation is different.
This school year I am determined not to sit and wonder “why my son?” and actually just embrace the learning experience that I am gaining from this. It’s so funny how I never considered myself a very strong willed person let alone an advocate. When I was younger I never stood up for myself, I just went along with the flow and whoever people said I was, was pretty much the identity I took on. Having the opportunity to advocate for my son has actually become a huge confidence booster which actually helps me resist an identity that people give me. Advocating for my son I had to learn not to let people (even people who care for and love him) label him the way they think is his identity. Yes, my son has certain traits and characteristics that might identify him with certain groups but I don’t want him to be who people say he has to be because of his special education supports. I also don’t want the services to be considered negative or “bad words”.
Now, with all that being said I am determined that we will get to a point where his special education supports will not be as necessary as they are now. When I say “giving up the idea that my situation is different” means not being in denial about what is going on and addressing the situation that we are in now, and does not mean that I don’t keep researching and discovering the how, the why, and the how do we manage it all. I feel like understanding and coming to grips with the circumstances that are going on in one’s life is half the battle.
The biggest battle I want advocates to learn in their own journey is, please do not let the child fall through the cracks. I have seen first-hand from previous ED (emotional disturbance) classrooms that my son has been in, how putting children with all different types of emotional disturbances and different levels of emotional disturbance can actually hinder and create more challenges that weren’t originally there. I know some schools and districts are limited on resources. You as that child’s advocate are their best resource. Stop asking “why me, why us, why them?” Start asking “how can I be a resource for their continuous growth.”
This week I challenge you to let go of any denial and any negative ideas about special education. Make a list of all the negative thoughts and misconceptions and write down a rebuttal ex.) My child will be labeled VS. I’m more concerned about their personal development than what’s on paper or what people may say.
“‘Why me?’ Rarely produces a positive result, while ‘How can I use this?’ usually leads us in the direction of turning our difficulties into a driving force to make ourselves and the world better.” Tony Robbins