Sharing our challenges with Autism

I have said many times that the best way to spread effective Autism Awareness is to share our personal experiences.  Those experiences can be both good and bad and they can also be different for each family.

I thought I would try to get a better understanding of the community by asking you question. 

What is the most difficult part of raising an Autistic child? I don’t mean this in a degrading way.  We all love our kids but the reality is that life can be challenging.  I’m just wanting to better understand some of the challenges your family faces.

0 0 votes
Article Rating
Subscribe
Notify of
guest

This site uses Akismet to reduce spam. Learn how your comment data is processed.

5 Comments
most voted
newest oldest
Inline Feedbacks
View all comments
Cassandra

Like Bonnie, we do not have family support, which is very difficult. It's harder because our families do not live in the same state as us, so we only seem them once a year, maybe two and that's it. They have no idea what our day to day struggles are and, actually, really don't seem to care.

Our other struggles is knowing actually what is going on. Our oldest has been diagnosed with CDD and no one can tell us what caused it, how far his regression is going to go and what, if any, of the skills he will relearn. We are also starting to see quite a bit of short-term memory loss, almost like dimentia, and that is a huge concern for us, which we will definitely be bringing up at our next appointments that are scheduled between now and October!
My recent post Short Term Memory Loss

Cassandra

Like Bonnie, we do not have family support, which is very difficult. It's harder because our families do not live in the same state as us, so we only seem them once a year, maybe two and that's it. They have no idea what our day to day struggles are and, actually, really don't seem to care.

Our biggest concern right now though with our child with CDD is his short-term memory seems to be going away. He doesn't remember things that have just happened or even things he was just playing with. Last night we were talking about how he went fishing at camp and I told his dad, "Yeah, he's been building fishing poles out of his blocks." He said, "No, I didn't." We had friends over for dinner and my friend had watched him playing with her boys while they built their "fishing poles" and caught fish.
My recent post Short Term Memory Loss

Bonnie Stewart

I think one of the worst moments, worse than public meltdowns, worse than unbearable exhaustion with no respite, was when I shared at a family gathering that I had gotten called for jury duty. The look of sheer panic on my mother-in-law's face said it all. If I got called for a week of jury duty then, perish the thought, I would need babysitting. My sister-in-law who now has seven children was sitting right there. If that had been her they would have said. " Oh well, jury-duty it only comes once in a while." We're family. We will help out. I knew that no one would step forward for me like that. Instead my mother-in-law insisted that I get a doctor's letter of excuse because I had to take car of an autistic child. I walked out of the room ostensibly for a drink right then. I was so angry and hurt I was speechless. I came back in and my brother-in-law very kindly said. "Let' just pray about it." It didn't help the feeling of utter rejection, but it did keep the situation from getting any uglier.

So I did what my mother-in law suggested and went to the doctor. Paid for the visit and everything, just to get a letter of excuse which he did give me. My husband did watch my son just long enough for me to respond to my first morning at the jury. I presented the letter and got excused.

Then I called my mother-in-law and told her that I had gotten excused and that it had been necessary to make a regular doctor visit to get the letter. I guess she tried not to sound too relieved, even though she was a bit sorry that I had had to take so much time and money at my own expense.

And the terrible realization swept over me. "As far as the world is concerned, because I have an autistic child, I am not even allowed to die."

Lost_and_Tired

You just said what haunts my dreams. We do have family support, especially for things that come up like that. However, these are usually only for small periods of time because the boys are a handful.

I\’m so sorry that you have to deal with that. It\’s an ugly reality that many live in and very few will talk about. Thank you so much for sharing this with us. I wish the world would wake up and take notice but it\’s a terribly slow process and many of us need help.

Thank you for your courage and you and your family will be in our thoughts.

Bonnie Stewart

I don't want anyone to misunderstand. My mother-in-law is one of the best people. She is very generous and loving. It is just that this is an area where even good people are at a loss. Thanks so much for your support and understanding. It makes all the difference

5
0
Would love your thoughts, please comment.x
()
x
%d bloggers like this: