Friday, November 8, 2013

Don't be sorry....

"I am so sorry", " I don't know how you can do it."," You must be a very strong person.", "Do you ever just wish it was different?"  As a special need parent these are some of the most common things we hear. They are usually from well meaning individuals, family, friends and strangers alike. While I realize they probably mean no harm in their statements it just becomes unnecessary and awkward. 

We aren't sorry for the child we were given. We do it because we are the parents, it is our job our duty our RESPONSIBILITY. We do this the same way would we would raise a typical developing child. I don't feel I am any stronger than the next parent to do what I do. I think or I would like to think that any other parent in our place would do it, I know however in reality this is not the case but I always believe that this is how it should be. Never, ever ever do I wish this was different for us. This is how it was suppose to be so why would I want to change it. There are days that it gets to me but then again I think regardless of what my child is diagnosed with I am sure I would wish the that things were different. However this is how my child is, this is who are family is, this is what our lives are now. Nope no need to change it. 

My mom called tonight. We speak once a month or every six weeks. Gasp and tell me what a bad daughter I am but I have my reasons and do not need a lecture on how I am a cruel daughter for my estranged relationship with her. Anyways she had just had a friend over with her 6 year old Autistic son. Gathering from the tone of voice and the call he has to be much more severe than my child. She hasn't seen H since he was a newborn so she really has nothing to base anything off of unless my family has mentioned his behaviors and diagnosis to her. She proceeds to say how sorry she is over and over. I reassure her I am fine and that really its going to be ok. At this point I feel awkward because she honestly has no idea what we endure day in and day out.

After she tells me about the visit I have to start the explanation that he is a lower functioning Autistic. I only assume this from the behaviors and the lack of potty training etc. My mom was baffled that I knew so much about this child I had not met. Hmmm lets see everything she described, my own personal knowledge and now training in I think I have it covered. She seemed so amazed by it. She still actually has no idea what our daily life entails she just thinks she does because of a visit from her friend today.

She asked all sorts of typical questions that we get from people who don't know us well or have no idea the variations of this spectrum disorder. My mom is old school and not hardly capable of using a computer let a long a smart phone so her knowledge base on Autism is very outdated and very Rainman esque. I explained his quirks as you will and she seems to be grasping more that my child is nothing like the 6 yr old who was at her home today. 

Once I finally got my mom to actually listen to what was being said she started to grasp what we deal with on a daily basis. I told her you meet one Autistic child you have met ONE Autistic child. I said while yes these two share similar quirks and such that they are both on opposite ends of the spectrum. Regardless it is a social disability that effects social skills, cognitive and some motor skills. Again since she has not seen H since he was a newborn really has no idea what he is like. She kept wanting to talk on the phone with him and I had to explain this was not going to happen as he has no face to put with the person and will not answer her questions unless they are his desired topic, she finally understood this. 

After she and I ended our conversation, H was running around outside of our destination climbing and getting very excited, I really started thinking more about her call. I know she was prompted to call because of her encounter today. I can only assume she felt genuine concern of us because of what her friend endures on a daily basis. I know she wants for this relationship with him and myself. I however am not sure I am ready for it. I don't want the relationship out of pitty and feeling sorry for us. We get along just fine and I don't need her to give the tone of the "oh woe is me" to all of it. We are not dwelling on this at all. We embrace it and claim it as our normal life. I never want H to think we should dwell on this or that its his fault at all.

So please if you ever encounter a family who has a child with a disability don't pitty them, feel sorry for them or make them think their life should be different. Help them embrace it, encourage and support them. This was the hand they were dealt and they are making the absolute most of it so you should also.