It is with a very peaceful heart that we have decided to start homeschooling Annie. We have been thinking of it for a few years now and have decided that this is the time. Thankfully we have also found great respite care and a wonderful tutor that loves and believes in Annie. We have no doubt that this is the right decision for Annie and our family. I can't wait to see how much she learns this year, we are so excited to unlock her potential! As for school, well, its no secret that the educational system here is having financial issues, unfortunately that means less staff, more students and less funding - special education seems to be the hardest hit. We feel blessed to be able to have home schooling as an option. The following is Annie's "educational story". It's been a rough road but its paved with lessons learned and we are wiser for it.
A moment in our shoes: A letter to our special education team
If you could imagine for a moment, you have a little girl, watch her grow and thrive then one day she slips away from you. She loses her ability to ambulate, to speak, to use her hands and slowly develops an extensive list of severe health problems. Despite all that’s been lost you look at your daughter and know that she is still the same little girl inside, but now, she’s trapped. Your life becomes filled with doctors and testing and medicines and somewhere in all of this you remember school.
Educators and therapists come in and see the little girl that IS, not the little girl that WAS. You try to explain what she did, what she knew but it’s hard to put into words and it’s hard to remember and it’s very painful and fresh. You lean on these people knowing that they are the experts and they will help you. Slowly you realize that they aren’t sure what to do either, you enter a scary place, a place where your daughter is misunderstood.
It’s time to send her to school. You’re told to trust, to let go, but you have a little girl who can’t speak, can’t protest and can’t explain what happened during her day. Your heart tells you no, your brain tells you no, but you let go anyways and leave her in the care of strangers. You trust, you check in, you keep close contact with her teacher and therapists. You spend your days worrying about her, learning about her disease and trying, desperately trying, to get the teachers and therapists to understand your daughter, her diagnosis and her potential. The year comes to an end and you realize that one of your daughter’s most basic human needs has been denied for almost an entire year. You feel anger, hurt, betrayed. You cry for your daughters lost dignity and you wonder how in the world you can ever trust again.
A new year, a new teacher they listen to you and say they understand your concerns. You’re told to trust, to let go, but you have a little girl who can’t speak, can’t protest and can’t explain what happened during her day. Your heart tells you NO, your brain tells you NO, but you let go anyways and leave her in the care of strangers. You check in more often, you keep even closer contact with her teacher and therapists. Her teacher explains how much your daughter is learning, how smart she is, how she is moving forward in her education. The year slips by and you find out that testing was performed on your daughter that you were unaware of. The teacher that told you that your daughter was smart performed this test and concluded that your daughter is too disabled to be educated and should work rather on life skills. Your heart breaks. How could anyone count a child out at the young age of 5? You feel anger, hurt, and betrayed. You cry for your daughter’s hidden intelligence. You are certain you will never trust again.
You have meetings with people in higher places. You stop playing “friend” and start to demand. You are angry and make sure people know it. You start sighting research articles and calling on medical professionals. You are told that the next group of teachers and therapists will understand, that they are equipped to handle this type of diagnosis. You’re told to trust, again and to let go again, but you still have a little girl who can’t speak, can’t protest and can’t explain what happened during her day. Your heart screams NO! Your brain screams NO!, but you let go anyways and leave her in the care of strangers. You don’t trust and you make that quite clear. You make a pest of yourself, you don’t let a day go by without contact with her teacher. You will not let THIS year slip by. You know now that teachers and therapists don’t listen to parents, they listen to professionals. You find a world-renowned specialist and she takes the reigns for you. She becomes the voice for your daughter and it’s a huge weight lifted off your shoulders. You ask for the team to meet with this specialist, she’s so busy and has taken time out to help YOUR amazing daughter. To your dismay only 2 members of the team shows. You hang on the hope that the 2 that are there can catch a glimpse of the potential that both you and this specialist know your daughter has. You give up some of your fight and focus your attention. You are bitter and doubt the team. You are right to do so. One therapist is giving you services but doesn’t have goals. You explain that this is not productive or legal. You get nowhere. Another therapist writes goals that your daughter has already mastered. You site 2 private therapists that prove this but she continues to claim that your daughter doesn’t have the ability to ambulate even a few steps. The team fails you. You aren’t allowed to see your daughter in her class because of “confidentiality” but you do anyways. You find your daughter reading infant books (the same books she could hold, point to and say words from on her own before her sickness trapped her 5 years ago). You find her sitting in a kiddy pool with rubber ducks. When asked if she spends time with her typical peers you’re told she is ONLY able to do so during “specials” because that’s all she’s capable of. During those “specials” your daughter isn’t allowed to speak (her computer doesn’t travel with her), or participate like her typical peers (a year of trips to the library and she has only been able to check out 1 book). You feel anger, hurt, and betrayed. You cry because your daughter has to constantly prove her worth.
You find out about meetings that are happening without your knowing - you shout about it but no one cares. The communication device that you tried so hard to get for your daughter, the same device that outside professionals said your daughter could use and master sits in it’s bag, only a select few people have been trained on it and it’s only allowed to be used on certain occasions because of a liability issue – you shout again, but again, no one cares.
You don’t have the money but you spend it anyways on Wrights Law conferences, meetings with lawyers and advocates. You stop spending your days worrying about your daughter and trying to get the teachers and therapists to understand her. You find any excuse to keep your daughter away from school and sometimes you make up excuses. You hold on to the hope that the people on her team are really GOOD people. That it’s the beaurocracy, the red tape, the lack of funding that is to blame for your daughters educational demise, but does it really matter? You realize that your daughter has not learned a single thing in over 3 years and will never be properly educated in this school system. You start to wonder if you can single handedly do what a whole team of “professionals” could not do. You stop being angry, hurt and feeling betrayed. You start to forgive. You realize that staying in school will cause your daughter to regress and you can’t allow that to happen. You take her out of the school system and pray that God will give you the strength to do all of this alone. You continue to believe that there will soon be a day when everyone will know why you fought so hard. One day they will see the little girl that once was trapped but now is free.