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.