The Good and the Bad
Hola! I am officially back to work! Today is an Austrian holiday but not at work so walking to the Ubahn station on a cold and windy winter morning is very very crappy. Generally I would be in a better mood (I have a great winter hat) but the Kid had an unprovoked freak out at 4:30 a.m. The good news is that it only lasted a minute, the bad news is that this is the second one this week. On Monday he had a terrible one that lasted over 45 minutes and ended with both of us in tears. It is always difficult to figure out what provokes them but most of the time it is due to him being in some sort of pain. We have introduced probiotics recently and after spending a couple of hours on the Interwebs this morning, I feel like we can try something in addition to changing his diet. When he has a freak out, he attacks us and it is difficult: physically and emotionally. I have talked about them before because I think it is very very important for me to be very transparent about my life regarding autism. Autism does not define my son, but it affects our family. I would never want my son to change because I love who he is and since he is autistic, I have to embrace that as well. I have a bizarre crush on Eric Roberts and my friends still support me. They judge me... but they support me.
I have chosen to be open about our struggles because if I only talked about the good, it would be incredibly disingenuous (hard word to spell). Parents of children with autism as well as people with autism need to not feel so alone. Many adults with autism feel that they have been a burden to their parents which is incredibly heartbreaking to hear. You are not a burden because you have autism! In fact, all kids are burdens (half joking here). Just ask my mother about the time I gave away expensive luggage at summer camp, or when I broke an antique crystal jug to make ice tea, or that time I thought I was Japanese. Autism has changed my world and, I am being completely honest here, for the better. Yes, there are struggles and the hardest part is the "melt down/fit/freak out". It is soul destroying and makes me feel helpless, and that is the one time that I ever consider that something needs to change in my son. That is all. Therapy is not about changing or even "curing" my son... it is like teaching a child how to read. It gives him the tools that he will need in his later life. His stims, his personality and his quirks are fine... his fits are not. I recently received a scathing message from someone I do not know saying that I shouldn't use the hashtag #autism when posting a picture of my son on Instagram because that is labeling him. I didn't respond to the message but I will here. I rarely use the hashtag #autism when posting pictures of my son unless I feel it is relevant to autism awareness. A huge milestone or event is important to us and to others and ergo, out comes the hashtag. Hashtags are search functions in Instagram and not just for fun.. but boy can they be fun! #amirite When talking about labeling, this is what I say to that: autism is not a definition of my son, but it is a part of who he is. By labeling him, I am ensuring he gets the proper support. If somebody is diabetic, we ensure proper diet and/or access to insulin. But we don't go around saying Diabetic Bob and the same applies to my son. Yes, he has autism, no he is not defined solely by it. And I guess the best way to respond to the message I received is "....". Meaning, no response. Or...
I jest. Kind of. Every parent has a different approach to autism and that is their choice. I cannot stress this enough when talking about various therapies and approaches: you do you. There is a lot of in fighting in the world of autism and it really drives me batty. We are all on the same team... just one person is a fan of pepperoni pizza and the other of cheese pizza. Yes, pizza is key to the secret of life. I didn't want this to turn into a ranty post but I feel that sometimes it is important to clarify some things. Someone is always going to think you are wrong and that is ok. I have grown a lot in the past few years (horizontally, too) and have realized that what is best for the Kid is what is best for us. No apologies. So if my hashtags rub you the wrong way, just wait until I finally get on Snapchat! We will see what the next few months bring and whether or not the addition of something new (dietary, stay tuned) will help stop or rather lessen the fits. It's been the hardest couple of years of my life but also the most rewarding. All that is missing is a smaller waistline and an invite to the Opernball (Yes, still on my bucket list. Yes, I am shallow. No, I am not ashamed.) Again, this post was supposed to be about my Yoga and vegan challenge (I am basic, I know) and my New Year Bucket List (so basic) and the fact that I just bought myself the most Boho of watches on Amazon for 14 euros (kill yourself now, basic Tova)...cough.. but the 4:30 a.m. wake up call changed that. So in a day or two there will be another post, hopefully filled with less seriousness because seriousness is not really my style and this is why I never became a lawyer or a trophy wife... both would have required a lot of concentration. I wish you all a fantabulous Friday! Enjoy the holiday! Enjoy taking down your Christmas decorations! Remember to replace your tooth brush every 3 months! Happy Friday!
I have chosen to be open about our struggles because if I only talked about the good, it would be incredibly disingenuous (hard word to spell). Parents of children with autism as well as people with autism need to not feel so alone. Many adults with autism feel that they have been a burden to their parents which is incredibly heartbreaking to hear. You are not a burden because you have autism! In fact, all kids are burdens (half joking here). Just ask my mother about the time I gave away expensive luggage at summer camp, or when I broke an antique crystal jug to make ice tea, or that time I thought I was Japanese. Autism has changed my world and, I am being completely honest here, for the better. Yes, there are struggles and the hardest part is the "melt down/fit/freak out". It is soul destroying and makes me feel helpless, and that is the one time that I ever consider that something needs to change in my son. That is all. Therapy is not about changing or even "curing" my son... it is like teaching a child how to read. It gives him the tools that he will need in his later life. His stims, his personality and his quirks are fine... his fits are not. I recently received a scathing message from someone I do not know saying that I shouldn't use the hashtag #autism when posting a picture of my son on Instagram because that is labeling him. I didn't respond to the message but I will here. I rarely use the hashtag #autism when posting pictures of my son unless I feel it is relevant to autism awareness. A huge milestone or event is important to us and to others and ergo, out comes the hashtag. Hashtags are search functions in Instagram and not just for fun.. but boy can they be fun! #amirite When talking about labeling, this is what I say to that: autism is not a definition of my son, but it is a part of who he is. By labeling him, I am ensuring he gets the proper support. If somebody is diabetic, we ensure proper diet and/or access to insulin. But we don't go around saying Diabetic Bob and the same applies to my son. Yes, he has autism, no he is not defined solely by it. And I guess the best way to respond to the message I received is "....". Meaning, no response. Or...
I jest. Kind of. Every parent has a different approach to autism and that is their choice. I cannot stress this enough when talking about various therapies and approaches: you do you. There is a lot of in fighting in the world of autism and it really drives me batty. We are all on the same team... just one person is a fan of pepperoni pizza and the other of cheese pizza. Yes, pizza is key to the secret of life. I didn't want this to turn into a ranty post but I feel that sometimes it is important to clarify some things. Someone is always going to think you are wrong and that is ok. I have grown a lot in the past few years (horizontally, too) and have realized that what is best for the Kid is what is best for us. No apologies. So if my hashtags rub you the wrong way, just wait until I finally get on Snapchat! We will see what the next few months bring and whether or not the addition of something new (dietary, stay tuned) will help stop or rather lessen the fits. It's been the hardest couple of years of my life but also the most rewarding. All that is missing is a smaller waistline and an invite to the Opernball (Yes, still on my bucket list. Yes, I am shallow. No, I am not ashamed.) Again, this post was supposed to be about my Yoga and vegan challenge (I am basic, I know) and my New Year Bucket List (so basic) and the fact that I just bought myself the most Boho of watches on Amazon for 14 euros (kill yourself now, basic Tova)...cough.. but the 4:30 a.m. wake up call changed that. So in a day or two there will be another post, hopefully filled with less seriousness because seriousness is not really my style and this is why I never became a lawyer or a trophy wife... both would have required a lot of concentration. I wish you all a fantabulous Friday! Enjoy the holiday! Enjoy taking down your Christmas decorations! Remember to replace your tooth brush every 3 months! Happy Friday!
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