What an Autism Parent wants you to understand

Sometimes people are selfish and cannot think beyond themselves.

However, this way of thinking needs to stop when it comes into the context of parents who have childern with autism.

I do not mean that parents with childern who have autism are selfish.

The way I mean this is that people on the outside of the whole autism household are sometimes selfish and cannot think beyond themselves.

I was recently subjected to such selfishness by my boyfriend’s sister.

This post is to hopefully help those on the outside of the autism household to better understand the workings of an autism household. Also to get these same people to break away from the “me” focused thinking and see beyond themselves.

So let me get down to the story and add some insight…

John’s sister (who I will call Anna) moved back a few years ago with her then husband. At that time, John was still living in his old childhood home. His sister and then husband moved into the same house with John. Anna’s marriage did not work out and they divorced. Her ex-husband moved out and back to whatever state he was from.

Anna quickly met another man (Drew). From there, Drew moved in and Anna got pregnant. Anna had a son named Eddie.

At first Anna was fine with Keri’s autism.  I explained how Keri was and how her behaviors could be. Anna has seen first hand how Keri can be and how I have to handle her meltdowns.

Also once Eddie was born, Anna seemed to get more skittish with having Keri around her son. I understand Anna’s line of thought since my daugher can be violent. So I have made it a point not to bring Keri over if she is having a hard day. But I do this anytime Keri is having a hard day. There have been a number of things that Keri and I were going to do with my boyfriend, or my family, other friends, or just going to the park, store or any other place that have had to be cancelled because of Keri having an overly aggressive and violent day. So Anna is not being singled out in anyway … this is routine for Keri and I.

So to get to the point, Anna is moving out west with her family in the next week or so. John went over there with his daughter  (April) yesterday. He did this so April could see her aunt and cousin before the move. Keri and I were suppose to go too. But some old story, Keri has had an aggressive and violent week. So with the bite marks and bruises on my arms from my daughter, I made the decision not to go.

So since I decided not to go over, Anna told John “I guess Sandy (me) doesn’t care enough to come over and see us before we move”.

That comment is where the selfishness and not seeing beyond one’s self comes into play.

Anna simply does not see beyond herself to understand this fact …

AUTISM AND THE MANY MOODS/ BEHAVIORS DECIDES WHAT MY DAUGHTER AND I CAN DO.

Trust me, I would **LOVE** the ability and freedom of having the choice to go out and do things both as a family, with Keri, with John, or by myself. This is something that people or people with neurotypical childern take for granted.

AGAIN AUTISM DICTATES MY LIFE CHOICES!

This is a list of things that happens regularly in my life that these people need to understand. ..

*Finding a babysitter is extremely hard and costly. I cannot just find some teen ager that is responsible and good with childern. Keri needs someone who understands autism, especially the aggressive and violent tendencies. This person needs to know how to handle her when she gets that way. Hence the specialized care is costly, and I cannot afford it. My sister is exellent with Keri and is the only person who can handle her. So I may get out maybe once a month.

*If Keri is having major difficulties with her behavior, all plans existing or else wise are canceled.  Sorry, but it makes life easier for Keri and myself for her to have her meltsowns in the privacy of our own home. I do not have to worry about what damage Keri may do to someone else’s property or to another person.

*Going anywhere is a challenge – Keri’s mood changes moment from moment. Driving can be a challenge because she has thrown stuff at me and attacked me while driving down the road. She has acted out in stores and out in public. At those times, its easier to stay local.

*These decisions of staying local or cancelling plans has no reflection on how I feel about a person. It is the fact that I am putting my child first, because her needs outweigh anything else in this world.

*I miss out a lot in life because of putting Keri first. I cannot run out with a group of friends for a drink or go see a movie. I cannot go out as a family with John, April, and Keri with out first seeing how Keri is going to be. John and I cannot go out as a couple with out first planning months and months in advance. More often then not, John and April will do things with out us. John will go out with out me. Spontaneously going out is extremely rare. Going anywhere by myself barely ever happens other then quickly going to a local store. But this my life.

*I have many scars, bites, bruises, and scratches on my arms from Keri’s meltdowns.

* My daughter may never do certian things like have a boyfriend, drive, get married, have a job, live on her own let alone be left on her own, go to college – etc.

*I may not sleep very well if Keri decides not to sleep at night.

I am sure I am missing something. However,  you get the idea. My life is hard. I do not want pity. I just want  understanding. I do not want to miss out on life,  I do not want people to think I do not like them and do not want to see them.

Just stop the selfish thinking and look beyond yourself.