Hi all,
Ya know......autism is an interesting character. With the holidays right around the corner, I always love to reflect on time gone by and even time gone forward. This time of year is extra stress. It is for everyone but to a kid that likes routine, well, it's hard to stay in your routine when there is shopping, menus to plan, places to go, and people to see. There is no drop everything and just go with autism! JB likes people, he loves to go but it's always on his terms. We never stay long as it becomes chaos! I always wonder if people understand....
See, there is a lot we Autism parents go through daily. And it starts at the beginning....the diagnosis and the whirlwind of things that get thrown at you to intervene. And it's not just intervention, JB had a test to check his hearing and it wasn't just any test. He had to be put to sleep..... There was an MRI to check the formation of his brain and his grey matter.....something to this day, I don't completely get. Then a 24 hour EEG to check for seizure activity--super glad this was done as JB was diagnosed with epilepsy. All of these tests occurred within the year he was diagnosed.....hence the whirlwind or maybe better yet, the tornado!
But the whirlwind isn't just about tests or therapy....it's also about everyday. The way we ALL handle those 24 hours. Our family is dynamic, one minute things are great and the next minute there are no Doritos--end of the world! Going somewhere means packing up foods that I know JB will eat, toys he likes, and making sure someone is keeping track of time (because Autism does have a time limit)....there is this part of me that is always worried no matter what. And I know families and friends understand.....but that is a worry too! Just something that you think about when there is...time to think!
I think Autism has changed my life, not JB's. He is simply who he is and I will always be learning about him because he is always teaching me something and blowing my mind. It's not always okay that life is different but most of the time it is. And that is because family is love. What's important is togetherness and the joy that wraps you up. So what if we can only stay for 30 minutes......that's all we may have. And let it be.....
Have a great week everybody!
TTFN
Martha
Sunday, November 20, 2016
Saturday, November 5, 2016
Feeling Good (and I like it)!
Hi and welcome back!
This week I saw many positive events for JB that led to many positive feelings for me. Ya know, when JB left Jump Start at age 3 (because that's when all kids leave the nest)....I was scared. He became a part of the district. He moved around a little bit as we tried to figure out the right place for him.....and that little tidbit has really been key towards JB's success. He ended up in a blended preschool program and socially, we kept him there for 2 years. But then transition time came. We all made the decision to try mainstreaming. He did okay but really was never truly successful....then first grade came. Again daily behaviors popped up.....many I have shared previously in other posts. But as a parent, my stomach was in knots everyday. EVERY SINGLE DAY! My husband and I waited for the phone to ring, waited to hear what a crap day it was.....it weighed on us like a ton of bricks.
And when there is that much stress, it is hard to hold yourself together. Meetings were dreaded, emergency IEPs were called....and the news was never what you wanted to hear. Sure, there were always positives but the elephant in the room was there.....no one was willing to say this is not working. No one willing to say they didn't know how to help.....but then, one stood up and took a chance. Came to see me, was personable....and we agreed. Try something new, and we did!
It's been close to 30 days now at the new school. And it was time for a follow up IEP about the new placement. My internal stress-o-meter went up. I was not looking forward to this at all just because the meetings have been intense. I got to the school and sat in my car. Told myself to just breathe. Told myself to remember that things have been going well. JB has not run away and behaviors have decreased significantly. Does he still have outbursts? .....Hell yes! Autism is autism. The brain snaps. But JB's behaviors have not been as severe and he has been able to "reset" himself! Steps that are all in the right direction....
Soooooooo, how did it go you ask???? GREAT!!!! It was the first time where I felt like my kid was in the right place for him. They talked about him with a smile and commented on his sense of humor and timing for jokes. In fact, the story of the day was how my kid got up in front of the entire school and sang the "Silent E" song! My JB did that....my JB!!! That's huge! HUUUUUUUUGE!!! And man, I am a proud mama!
Now I will say that there were things discussed that are going to take some work. But that's why he is where he is....and he will stay for the rest of the year. Hopefully this will help him learn how to be a student. And here is the thing.....I walked out of that meeting with a different feeling. There was no dread or crushing blow. There was just me, a happy mom who could not wait to get to the car and call her husband to share the positive feelings. To let him know that we are all good!
That's sure a great feeling. And I like it!
TTFN
Martha
This week I saw many positive events for JB that led to many positive feelings for me. Ya know, when JB left Jump Start at age 3 (because that's when all kids leave the nest)....I was scared. He became a part of the district. He moved around a little bit as we tried to figure out the right place for him.....and that little tidbit has really been key towards JB's success. He ended up in a blended preschool program and socially, we kept him there for 2 years. But then transition time came. We all made the decision to try mainstreaming. He did okay but really was never truly successful....then first grade came. Again daily behaviors popped up.....many I have shared previously in other posts. But as a parent, my stomach was in knots everyday. EVERY SINGLE DAY! My husband and I waited for the phone to ring, waited to hear what a crap day it was.....it weighed on us like a ton of bricks.
And when there is that much stress, it is hard to hold yourself together. Meetings were dreaded, emergency IEPs were called....and the news was never what you wanted to hear. Sure, there were always positives but the elephant in the room was there.....no one was willing to say this is not working. No one willing to say they didn't know how to help.....but then, one stood up and took a chance. Came to see me, was personable....and we agreed. Try something new, and we did!
It's been close to 30 days now at the new school. And it was time for a follow up IEP about the new placement. My internal stress-o-meter went up. I was not looking forward to this at all just because the meetings have been intense. I got to the school and sat in my car. Told myself to just breathe. Told myself to remember that things have been going well. JB has not run away and behaviors have decreased significantly. Does he still have outbursts? .....Hell yes! Autism is autism. The brain snaps. But JB's behaviors have not been as severe and he has been able to "reset" himself! Steps that are all in the right direction....
Soooooooo, how did it go you ask???? GREAT!!!! It was the first time where I felt like my kid was in the right place for him. They talked about him with a smile and commented on his sense of humor and timing for jokes. In fact, the story of the day was how my kid got up in front of the entire school and sang the "Silent E" song! My JB did that....my JB!!! That's huge! HUUUUUUUUGE!!! And man, I am a proud mama!
Now I will say that there were things discussed that are going to take some work. But that's why he is where he is....and he will stay for the rest of the year. Hopefully this will help him learn how to be a student. And here is the thing.....I walked out of that meeting with a different feeling. There was no dread or crushing blow. There was just me, a happy mom who could not wait to get to the car and call her husband to share the positive feelings. To let him know that we are all good!
That's sure a great feeling. And I like it!
TTFN
Martha
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