. not “different” enough

Your child doesn’t “look” intellectually disabled.. well, you don’t “look” like an idiot and yet, here we are..

 

I HATE Autism, but I am also jealous of parents that have children with autism.  These parents have answers, and resources, and support groups out the wazoo. What I hate most is a “non specified diagnosis”  which is what little human “has.” Basically what that means is that there is something wrong, she is different and not up to par with peers of her age.  She is 5 with a cognitive ability of a 2-3 year old . I am a researcher to a fault.  I understand that Autism is a very hot topic right now and there are 100’s of sites dedicated to research and cures and parental support.  There is an autism community.  We have no community.  Little human is “different” but not quite different enough. When I google “special needs children” there are 100’s of sites dedicated to autism, research facilities, awareness “runs” and benefits, logos & tshirts.  There have been exactly 5 sites that cover “non autistic special needs” .. 5.  In those 5, there is MAYBE 2 paragraphs about how to help your child. I am lonely and scared and pissed and beyond frustrated because no, my child is autistic but whatever she “has” doesn’t have a face or a name.  We can not face this monster strait on, we have no idea what fight we are fighting and so we grasp at straws every day with very little to no support in figuring out ways to help her lean and succeed.

I said earlier that I am sometimes jealous of the parents with autistic children, and I say that because my severely intellectual disabled child has been refused services and therapy she desperately needs BECAUSE she is not autistic.  I actually had a doctor want to label her as autistic (although ALL testing proved the complete opposite) because he said “it’s just a label & at least she could get the services she needs.: ARE YOU FREAKING KIDDING ME?! How much of an injustice would that be not only to my own little human, but to the parents of children and the children themselves that DO have it and have to live with it every day.

We also had a doctor strait up tell us that little human “is different” but she is not “different enough” for people to pay attention, for specialists to pay attention, for friends/family to pay attention.  Autism is the “hot topic” right now, but what about the rest of us?  Why are there not just as many resources for “different” children.  We recently saw a genetic specialist (2nd I might add) and she said that she was 90% sure that little human has some form of a rare genetic condition.  During that conversation, she also asked “is she autistic?” When we said no, she made a face and said “good luck getting insurance to pay for the genetic testing we need to have done.  then we had to talk about insurance and the extensive testing she needs to determine the possibility of a rare genetic condition, but because she has such a “broad” diagnosis.. insurance will most likely NOT PAY FOR THE TESTING.  So, what we parents of “not different enough kids” are being told is that not only are our kids not normal, but they are also not worth fighting for in finding out the actual cause of said symptoms & to have the relief that comes with an actual diagnosis.  SERIOUSLY?! “because your child doesn’t have a definitive diagnosis, we will not pay for genetic testing to actually confirm a diagnosis because it would be a “fishing expedition”.  HOWEVER, if your child has any of the “appropriate” conditions, then any genetic testing can be done in the name of research to help find a cure for autism/appropriate conditions.  So.. let me get this strait.. someone will pay for “research testing” but not diagnostic testing.  I WANT TO KNOW WHAT IS GOING ON WITH MY CHILD, I NEED TO KNOW WHAT IS GOING ON WITH MY CHILD. Just because she is not diagnosed with a current “hot topic syndrome/disease/disability” DOES NOT MEAN that she doesn’t struggle the same or more.  It DOES NOT MEAN that we as parents do not struggle the same or much more.  My child is ill and no one can tell me why & insurance companies aren’t interested in finding an answer.

All special needs children DESERVE a chance.  All parents of a special needs child deserve answers if they are even remotely possible.  It may sound selfish, but at least parents with “diagnosed” children have an answer, a comeback, a REASON for how their children act or react to certain things and situations.  there is TONS of research being done on autism, and I fully agree that research is the most valuable thing we can do and push for, however.. what about the rest of us? what about our children that aren’t normal, but simply aren’t ‘different enough” to fit into any other category.  When will they be heard, when will they be allowed to have any testing needed to find a cause so that we as parents know how to better treat our kids? When will the research begin on whatever diagnosis we have?  No, I am not living with a autism diagnosis, which I understand is no small feat.  I have friends and family that are indeed battling with it and see how they struggle and fight for their children and against the stigmatism that goes with it. I give MAJOR kudos to parents and the children battling it, and in NO WAY am I belittling or playing down the significance in all that comes with an autistic diagnosis, but what we are fighting sometimes feels worse.  We are fighting the unknown.  It’s like going into battle blind with no knowledge if the enemy will have swords, or guns, or armor., and we have NOTHING to tell us or direct us in what we should prepare to guard us during the battle.  We have no idea what we are up against, and no one seems interested enough to help us fight too.

This is NOT by any means an attack on autism, nor the parents and children that are facing it.  This is a frustrated mother searching desperately for answers for the best way to help and treat my child, all the while being reminded day after day that because she isn’t “different enough” then currently, she isn’t a priority, and that simply is unacceptable.

image+insurance

 

 

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