Doug and I have been the best advocates we can be for Gavin since the day he was diagnosed. We made sure he received the maximum hours he could from all of his service providers and we pushed to keep his IEP on track in order for him to not face too much regression after his third birthday. Through all of these battles I never felt like anyone was out to get us it was just a process of us knowing our rights and learning the system.
Recently though I have been faced with what I feel is discrimination towards Gavin and our family. We typically have Gavin come home after school and stay with a babysitter. Every girl we have hired has been lovely, but they are all college students and their schedules change each semester. It feels like I am on constant nanny search and he thrives on routine so the consistent change for him is not healthy either. Doug and spent a lot of time talking about it, and although it will make our monthly expenses go up, we decided that enrolling him in a summer daycare and after school daycare would be the best situation for him going forward.
However, our first to attempt to enroll him in a daycare facility quickly made us realize this was not going to be an easy process. We are not shy about sharing Gavin's diagnosis with anyone that has to work with him, because the fact is he has Autism and he functions differently than other kids. Unfortunately, we have come to the realization that this is a red flag to others though. Our excitement about this new chapter for all of us has quickly turned into a fight we weren't expecting to have for him. We weren't prepared for people to not see Gavin for the adorable, strong-willed little boy that he is. Instead we were presented with people who only see Gavin as a label, and with that brings fear and rejection.
Gavin is being put through screenings at this particular facility that other students do not have to go through. We received a speech from the director of the program, in our initial meeting, about her concern for staffing to meet his needs. This was during the off moments when she wasn't trying to offer us a plethora of other options that we should consider outside of her program.
A year and a half ago Gavin was supposed enroll in a daycare, but we knew it was too risky for him and we knew it wasn't fair to the staff to have to watch over him based on where he was developmentally. We made the difficult decision to pull him from that environment and have never regretted that arrangement because we still believe that where Gavin was at the time, developmentally, would not have allowed him to be successful.
Doug and I would never put our children into a situation just to make our lives easier; we will always do what is best for Gavin which is what makes them questioning his eligibility so frustrating. He is not where he was a year and half ago; not by a long shot. Gavin can now speak in partial sentences (exciting right!! :)), he knows his own name, he plays well with others, and he thrives social settings with activities and group time. We have not made any requests for extra staffing to be with him, nor do we think he needs that type of support. We recognize that he is very fortunate to have low ratios in his current school setting, but his teachers and administrators are already talking to us about moving him to an inclusive classroom; which would change his student to teacher ratio dramatically. Since his parents and teachers believe he can function in that type of setting it would be nice to see him afforded the same admission standards as a typical functioning (or label free) child.
I know what you’re
thinking. Why even fight to have him at a place that doesn't want him? Well
there are several reasons, but the three most important are proximity to our
house and work, the hours they are open, and we really value the structure of
this particular program. In addition, it's just not right what they are
doing, and and we are fighting for Gavin and any future special needs children
that want to attend this facility. So now we must figure out the delicate
balance of fighting for what is right and unjust in the situation and
partnering that with the fact we still want him to receive excellent care at
the facility and not be the targeted outcast. Gavin is so much more to us and to numerous others than that label. He is an amazing little boy. Anyone that has the pleasure of getting to know him learns that very quickly. His giggle, his heart, his smile, his determination are just a few of his incredible strengths. He has struggles and accomplishments just like any other child. And just like every other child, we want him to be treated like any other fairly. Not like a label.