Those Words!

Is any other Autism parent tired of hearing “it’s common with children on the Spectrum” when it comes to something bad happening to your child? I am so tired of hearing it. Every time I take Cam to the doctor because of a concern I feel like I hear that sentence. Today was no different.

I picked Cam up from school and off we headed to the neurologist. We were talking in the car and celebrating that he had the best day at school he has had since the beginning of the school year. All was great on the ride there. Get to the office and still is ok until we get taken back to the room. The nurse goes to take check his blood pressure and it is a blood pressure cup that is attached to an entire system of other things that scare the you know what out of Cam. So she starts it up and he starts to freak out because it is hurting his arm. I try to calm him down and it just continues to get worse. Now she can’t get the machine to turn off and my son’s arm is turning different shades of red and the tears in his eyes are now streaming down his face and he’s screaming that he wants it off and he wants out of there. After what feels like forever she is able to get it turned off and off of his arm. He started yelling at her that she shouldn’t put things on him that will hurt him and that she needs to go away. Thankfully she was done and told me that the doctor would be in shortly. I was able to get Cam calmed down and then in walks the doctor. Complete freak out number two. Cam hasn’t had many meltdowns at all lately so this caught me by surprise. But I sat there trying to get him to literally stop climbing the walls in complete fear as he was screaming for the doctor to go away and that he just wanted mommy to take him home. It took all I had to not completely break down with him. I felt awful and there was nothing I could do for him. We HAD to have this appointment. So after some time, the screaming, crying, climbing the walls and after trying to bolt out the door he slowly calmed down and I was able to give him my phone to play with.

Here is where those words….those words that are like nails on a chalkboard to me came in. We were discussing some of Cam’s issues and one of them is he completely blanks sometimes, forgets what he’s doing and this is a big concern to me. The doctor right away goes through certain symptoms with me and says he may be having Absence seizures and “these are very common with children on the Spectrum”. Then we go over the tests Cam’s going to need to see if this is in fact what he’s having. And as I am trying to wrap my head around this, he again reiterates that these are “common to children on the Spectrum” and that Cam’s life will always have these hills for him to overcome. Of course he said this nicer than the way I just put it. But as I was sitting there holding back tears, wanting to just take Cam and run because I didn’t want to deal with any of this…it didn’t matter how nice he told me anything.

Why is it that my child who has so much already against him can’t catch a break? Why does he have to have all of these other “things” that are “common for children on the Spectrum”? Why does he have to have anything else to battle? Why does he need any other hills to climb through life? Is it not enough to be Autistic? Is that hill not enough for him? Maybe it is just the fear of the unknown right now, but I just think it is unfair to my son….to all children on the spectrum that there are so many other issues that are “common” for them.

We will do the oh so fun (insert LOTS of sarcasm here) sleep deprived EEG next week and then go from there on what other tests he will need. There are other concerns that the doctor had, but this is the first one to tackle. We will get through this as we do everything else…but it doesn’t make hearing those words any easier and it doesn’t make the fear of the unknown go away.