I’ve often times been afraid to talk about the problems I have within my daily life and my family. In today’s politically charged climate I have found it easier to stay silent and censor myself than to upset my client base. It isn’t that I don’t want my clientele to get to know me, because nothing could be further from the truth. I have just found that it is easier to stay silent than to have long drawn out conversations on politics or anything that could be perceived as a “hot button” issue.
Take the discussion about special needs children. Over the course of the laIt year I have watched my children’s father mentally struggle with having coworkers who honestly believe that many special needs children should be locked away in institutions, special schools, or removed from public education entirely. More often than not special needs children are regarded as “less than desirable” or “retarded”, and I have listened to the conflict that their father has with working in such a hostile environment.
This is why I try to stay silent.
As a mother to a special needs child, I find it difficult to discuss such issues with people of “normal” children. Don’t get me wrong…I would love nothing more than to increase the understanding of the world around me that these children deserve the same kind of compassion and consideration as any other child. But is that really true? Simple fact of the matter is…our laws and education system is failing special needs children.
Take my son, Jakobe, for instance. I have advocated since he started in school that he needs more than a general education classroom can provide. Yes, he is a very smart child. But as he suffers from his symptoms of Autism, ADHD, and suspected bipolar disorder he is continuously falling behind socially with his peers. He is struggling with impulse control and mood regulation. Simple fact of the matter is…a general education classroom caters to his educational needs, does not in any way favor his needs for more individualized care and inability to regulate his moods. And this has become more apparent as the school year progresses.
This week has been an eye opener for the school district. As his IEP conference meeting approaches, they are now scrambling to figure out their next move to meet both law and his needs. The law dictates that he be placed in the most least restrictive environment, and this is something that I never have agreed with. Once again I am going to be advocating for a more structured and routine classroom, but thankfully I finally find myself in a position where they may ACTUALLY listen.
So what has caused this drastic change? His violence. In the last week alone he has punched five of his classmates, and today he stabbed a child with a pencil. Other parents are starting to raise their concern for their children’s safety in the classroom…and I do not for one minute blame them. I do not in any way condone what Jakobe has done. I’m sick over it, actually. But the school cannot for one minute say that I have not been warning them. This is THEIR fault.
I have not failed my child. No matter how much I try to place the blame squarely on my shoulders his behavior has nothing to do with how I may or may not have failed him. Nothing could be further from the truth. I knew he was autistic when he was born. All the signs were there….the lack of eye contact, the problem with regulating his emotions as he aged, the repetitive behavior, the developmental and speech delays. I spent the next 18-24 months trying to get him the help that he needed, the next several years shuffling him between a variety of therapies and doctors. He spent age 3-5 in developmental pre-school, and even now as he is 8 years old I am shuffling him between psychiatry and school on a regular basis. I even signed him up for therapy services that can be conducted through the school so he is getting school based help.
This has come at a cost….both financially and emotionally. What could I have done differently? Very few things come to mind.
So now, here I am. Faced with a child that is not getting the support he needs in school with a school unsure on how to serve him in the future. His meds have seemed to stopped working, so once again I am scheduling an emergency appointment to ask for guidance on how to proceed. I know what is coming – short term residential care – and I am terrified.
So as I sit here writing this – giving you a brief glimpse into my life – know that I don’t do so lightly. People often forget that while I am a photographer I am a person and mother first. I cannot handle the weight of the world alone….so I will shout to the rooftops that I am struggling. I am scared. I feel like I am failing.
…but the one thing I will NOT tolerate is the language of the coworkers my children’s father face. Maybe my son shouldn’t be in general education. And maybe he should be in an institution – at least while we get his medication adjusted – to keep his sister and other children he has access to safe. But the one thing my child is not is “retarded”. I can stay silent no longer. I cannot brush my life under a rug and pretend that I am “a-okay”. I’m not.