Inconvenient Truth

During a meeting last year at school, it was revealed to me, certain professionals in the school system were “forewarned” about our family.  We were labeled, “adversary”.  Since Alyssa began preschool, it was apparent to us, if we wanted Alyssa to be included in a general education setting, with her age appropriate peers, at her home school, it was going take a great deal of effort on our part.  In the community we live in, children who have significant needs are often placed in a class, separate from the general education group.  The children who have lesser needs are given more opportunities to be amongst the typical children.  Just so you know, the law is written to say, all kids, regardless of race, ability, etc., should have the same educational opportunity, as each other, within their public school. 

It was proposed to us, early on, Alyssa would be placed in the class, away from the typical kids, amongst other children who have special needs.  She would be able to participate with the general education kids in specials, like music, art and physical education.  We had to say no to this offer.  Wouldn’t it be convenient, if we, the parents, would have agreed to this?  We didn’t agree to this because the research clearly indicates, children with special needs, who are included with their fellow peers, do better academically and socially, on a long term basis.  Looking out for Alyssa’s best interest was, and is, our number one priority.  I have always objected to being called adversary, but I am starting to think….. it’s okay.  Call me what you will.  It really is okay!  I am proud to be Alyssa’s mom and making a difference for her will hopefully make her proud of me some day. 

Countless times, when I have been chatting with other mom’s who have typically developing children, it will come up in conversation, how our family must advocate for Alyssa, in order for her to be able to get what she “gets” at school.  My mom friends always seem astonished and will ask “why don’t children with special needs get what they need automatically?”  I ask the same question, but I don’t have the answer.  I have heard, there are some schools that are mainstreaming children, as a regular practice.  The truth, others aren’t.  Some are dunking their toes in the water, but hesitate on jumping in the pool. 

It’s very difficult for me because I just want what is best for Alyssa.  I don’t want others to try to convince me what they think might be best for her.  The tug of war should not exist, but it does.  The tug of war looks like adults at each end of the rope and the child in the middle.  In our experience, parents must pull hard, very hard, in order for the school to honor a family’s wishes, for their child to be included, with the typical kids, throughout the day and not just for specials. 

The part of all of this that really gets to me is how hard it is, overall, to have a child with Autism, in the first place.  We have sacrificed everything (and will continue to) in order to try to make differences for Alyssa.  We have spent more than we can afford on medical.  We’ve spent hours and hours on insurance declines.  My husband works very hard, yet I have difficulty drawing an income, while handling the day to day challenges.  We put ourselves out there, for Alyssa, with no regret, but plenty of sacrifice.  Why, oh why, can’t the education part of this be easier to work with?  Why are we called adversary because we want what is best for our daughter?  And, last, why is it, what appears to be right, and maybe best for the kids, is not automatic?  Somehow, I feel like being an adult isn’t so cool, after all… Especially, if it is us adults making these decisions for children without a voice!  I would be ashamed of myself, if I didn’t become adversary enough to give Alyssa her chance at the full educational experience! 

Writing about all of this makes me feel nauseous.  I realize, Alyssa is only coming into second grade and we will be challenged to continue advocating for her needs for many more years to come.  Maybe my tears are just me feeling sorry for myself or maybe they come from how hard it’s already been and knowing there is more hard, yet to come.  From the beginning of this blog writing, I told you I wanted you to be able to see all the wonderful things about Alyssa, but how can I do that if I don’t share the other part, the inconvenient truths, that are a part of our journey.   This is also an opportunity to reveal two sides to a coin.  There is the side we advocate from, and the other side, where she is succeeding!

Thank you for being a part of this journey, reading and sharing this blog with others.  Have a great week.  Angie

One more thing......  All my thanks to those who believe in Alyssa and have elected to help us pull the rope!  Friends, family, therapists, doctors, teachers, administration, parents, children and all those who are part of this journey, pulling, hoping and praying for us and Alyssa, we can't thank you enough.  Hugs!  Angie