Wednesday, September 1, 2010
Wednesday, July 21, 2010
Yes Autism is overwheming but we can do this.
Another parent has killed their child, in this case, children this week. How many is that this year?? I have lost count already. How many more?? Regardless if you are of the recovery mindset or ND right here right now none of that matters. No parent should feel so overwhelmed to find that the only avenue left is to kill their own flesh and blood.
We all know autism is overwhelming for us the loneliness, the endless hours of therapy, treatments, financial worries, stigma from so-called family and so-called friends it's never-ending. I don't know anyone who can survive on 2 to 5 hours of sleep and not want to go crazy and this can be after one night. Imagine doing it weeks to months on end, many of us do it because our kids don't sleep.
At the end of the day we have to keep this mantra in mind," Never give up...never ever give up." Autism is treatable and recovery is happening. Autism is the journey you CANNOT take alone!!!! If you do it will eat you up and spit you out and there will be nothing left of you for your children or your spouse. When someone offers help TAKE IT!!! From friends, from family, find a support group. In this day when the internet can help so much even a Yahoo group is an amazing resource for help and support. You're allowed to cry and scream and shake your fist at God and say "WHY ME AND WHY MY BABY?!". Then you need to pick yourself up and move along. You may have another day where you're going to lose it. Go ahead scream and cry but do it with your support. This is a marathon journey not a sprint. I liken more to a very long roller coaster ride, a lot of ups and downs.
Four years ago I was in the pit of autism. I let it burn me out to where I just couldn't cope.Did I want a "normal" kid, of course I did!! Did I scream and cry?? Of course I did!! Then I moved along and got support and moved along some more. Without the support and love of my family, friends, PITAs, mentors, TACA, Akshay's therapy team, etc, I don't think you'd see the kid I have today. I wouldn't be the mother and wife I am today if it wasn't for the support. I learned a very important lesson...I CANNOT do this alone. No one can do this alone. Autism wasn't a club I wanted to join and I am trying to get out of it. At the same time I'm not leaving anyone behind. If I'm getting out, we all are getting out. I have days were I cry because autism sucks but those days are becoming less and less.
If your are reading this and you're in the despair of autism, PLEASE reach out to us!!! There are so many people here to help!!! Facebook alone is a great support. TACAnow.org. Reach out and I know I can find you the help and support you need.
Thanks for reading. I just couldn't let this go today and I really felt I needed to say it. Never ever give up!
We all know autism is overwhelming for us the loneliness, the endless hours of therapy, treatments, financial worries, stigma from so-called family and so-called friends it's never-ending. I don't know anyone who can survive on 2 to 5 hours of sleep and not want to go crazy and this can be after one night. Imagine doing it weeks to months on end, many of us do it because our kids don't sleep.
At the end of the day we have to keep this mantra in mind," Never give up...never ever give up." Autism is treatable and recovery is happening. Autism is the journey you CANNOT take alone!!!! If you do it will eat you up and spit you out and there will be nothing left of you for your children or your spouse. When someone offers help TAKE IT!!! From friends, from family, find a support group. In this day when the internet can help so much even a Yahoo group is an amazing resource for help and support. You're allowed to cry and scream and shake your fist at God and say "WHY ME AND WHY MY BABY?!". Then you need to pick yourself up and move along. You may have another day where you're going to lose it. Go ahead scream and cry but do it with your support. This is a marathon journey not a sprint. I liken more to a very long roller coaster ride, a lot of ups and downs.
Four years ago I was in the pit of autism. I let it burn me out to where I just couldn't cope.Did I want a "normal" kid, of course I did!! Did I scream and cry?? Of course I did!! Then I moved along and got support and moved along some more. Without the support and love of my family, friends, PITAs, mentors, TACA, Akshay's therapy team, etc, I don't think you'd see the kid I have today. I wouldn't be the mother and wife I am today if it wasn't for the support. I learned a very important lesson...I CANNOT do this alone. No one can do this alone. Autism wasn't a club I wanted to join and I am trying to get out of it. At the same time I'm not leaving anyone behind. If I'm getting out, we all are getting out. I have days were I cry because autism sucks but those days are becoming less and less.
If your are reading this and you're in the despair of autism, PLEASE reach out to us!!! There are so many people here to help!!! Facebook alone is a great support. TACAnow.org. Reach out and I know I can find you the help and support you need.
Thanks for reading. I just couldn't let this go today and I really felt I needed to say it. Never ever give up!
Tuesday, June 22, 2010
Treading lightly
Ok so I have not posted on here in like forever. My good friend Shannon Primer inspired me to get writing again.
So let us talk about Akshay's 2nd grade year. WOW!!! Awesome and unbelievable are some of the words I use. My kiddo who ate the end of the 2008-2009 school year had two, yes TWO goals out of 28 completed. The end of the 2009-2010 school year he had 26 out of 33. 26 OUT OF 33!!! He can read now, does math and can write his name legibly!!! He plays tag with a bunch of kids and the girls think he's cute. My IEP went better than expected with the district not fighting me on services and goals. I mean WOW.
This is why I have to tread lightly. As in always the case things go well and suddenly something decides to screw with the delicate balance. I am already getting an inkling that something is on its way. Let's take the 1:1 aide situation. I found out two weeks ago that Andy wasn't going to be with Akshay, naturally I'm a little unnerved. Then I get an email "yes Andy will be with Akshay but maybe not in the fall." I really need to stop helping train the aides. Every time I get a good one they snatch them away.
I'm worried about summer and the terrible word...regression. We're so lucky to have CSA during the summer, but will it be enough. So again tread lightly.
Recovery..it's what this is all about. Sometime in Akshay I get clear glimpses of what recovery will look like. I feel like we are so close but we are missing something to finish the job. I know I'm not alone in that feeling, many of the parents I know in this battle feel the same way. We're all so close but yet so far away.
That's all for now. I am going to try and post often and hope to hear from you all soon. Fight On!
So let us talk about Akshay's 2nd grade year. WOW!!! Awesome and unbelievable are some of the words I use. My kiddo who ate the end of the 2008-2009 school year had two, yes TWO goals out of 28 completed. The end of the 2009-2010 school year he had 26 out of 33. 26 OUT OF 33!!! He can read now, does math and can write his name legibly!!! He plays tag with a bunch of kids and the girls think he's cute. My IEP went better than expected with the district not fighting me on services and goals. I mean WOW.
This is why I have to tread lightly. As in always the case things go well and suddenly something decides to screw with the delicate balance. I am already getting an inkling that something is on its way. Let's take the 1:1 aide situation. I found out two weeks ago that Andy wasn't going to be with Akshay, naturally I'm a little unnerved. Then I get an email "yes Andy will be with Akshay but maybe not in the fall." I really need to stop helping train the aides. Every time I get a good one they snatch them away.
I'm worried about summer and the terrible word...regression. We're so lucky to have CSA during the summer, but will it be enough. So again tread lightly.
Recovery..it's what this is all about. Sometime in Akshay I get clear glimpses of what recovery will look like. I feel like we are so close but we are missing something to finish the job. I know I'm not alone in that feeling, many of the parents I know in this battle feel the same way. We're all so close but yet so far away.
That's all for now. I am going to try and post often and hope to hear from you all soon. Fight On!
Sunday, January 3, 2010
New Year
Happy New Year Everyone!!! I am looking forward to this year to get my kiddo one step closer to recovery.
Saturday, November 21, 2009
Did we have the Swine flu??
Hmmmm yes I think we did. Akshay has never been one of those kids that when he gets sick just wants to lay down. Nope he wants to run around still and play. But this fever knocked him on his butt!!!
Akshay had been pretty tired when we went to my mom's house and slight fever developed later that night. When he woke up Halloween morning it was gone. By 11am that day it was back full force. I told Kareena to go ask Akshay what he wanted for luch and she came back and said, "Mama he's asleep." My mommy alarm went off and I ran upstairs looked at Eddie and he said,"He just feel asleep." I touched his skin and could tell he was really warm and the thermometer agreed and showed 102. He slept for nearly 6 hours!!! At 5:30 he didn't want to nor come downstairs to see my mom (who is his absolute favorite person in the world). He barely ate and by 8:30 his temp started creeping up to 103 and I gave him his first dose of Motrin. By 10:30 pm it was over 104. Eddie called our peds on call nurse while I covered Akshay in towels to lower his temp. I really thought we were going to be spending Halloween night in the CHOC emergency room. Luckily in the 45 minutes we were on the phone with the nurse he temp dropped to 103 and by midnight the fever broke. Which means I had a wide awake happy Akshay. He stayed up for about 3 hours and finally went to sleep around 3am. Luckily he did stay in bed the entire time so it wasn't that bad. By the morning the fever was back, I gave him more Motrin and he was his happy self and by the afternoon fever was back again. I decided to skip the Motrin to allow his body to fight it off again, also so that I could give it to him at bedtime instead so that he could rest. Poor kiddo's body hurt from all the coughing and he sounded awful. So he spent to whole week at home recovering. I have never seen him this sick with a fever that lasted almost four days!!! Do I think it was swine?? YEP
Akshay had been pretty tired when we went to my mom's house and slight fever developed later that night. When he woke up Halloween morning it was gone. By 11am that day it was back full force. I told Kareena to go ask Akshay what he wanted for luch and she came back and said, "Mama he's asleep." My mommy alarm went off and I ran upstairs looked at Eddie and he said,"He just feel asleep." I touched his skin and could tell he was really warm and the thermometer agreed and showed 102. He slept for nearly 6 hours!!! At 5:30 he didn't want to nor come downstairs to see my mom (who is his absolute favorite person in the world). He barely ate and by 8:30 his temp started creeping up to 103 and I gave him his first dose of Motrin. By 10:30 pm it was over 104. Eddie called our peds on call nurse while I covered Akshay in towels to lower his temp. I really thought we were going to be spending Halloween night in the CHOC emergency room. Luckily in the 45 minutes we were on the phone with the nurse he temp dropped to 103 and by midnight the fever broke. Which means I had a wide awake happy Akshay. He stayed up for about 3 hours and finally went to sleep around 3am. Luckily he did stay in bed the entire time so it wasn't that bad. By the morning the fever was back, I gave him more Motrin and he was his happy self and by the afternoon fever was back again. I decided to skip the Motrin to allow his body to fight it off again, also so that I could give it to him at bedtime instead so that he could rest. Poor kiddo's body hurt from all the coughing and he sounded awful. So he spent to whole week at home recovering. I have never seen him this sick with a fever that lasted almost four days!!! Do I think it was swine?? YEP
Thursday, September 3, 2009
One month of MB12 done!
So we've or actually Akshay has been on the MB12 shots since the 3rd of August and we've now completed our first month. I've noticed his stimming is finally going down. Also his spontaneous language is WAY up. He asks me follow up questions, which he never did before. His standard would always be "Mama what are you doing?" and I would say,"I'm washing clothes." or whatever it was and he'd usually just say okay and walk away. Now he'll say "Oh can I help?" or "Why did you do that?" or some sort of follow up. It's really exciting for us but at the same time I'm trying not to get too excited. When I do something happens and screws everything up, so I guess I shall remain cautiously optimistic.
Thursday, May 14, 2009
Hello and Welcome!
Welcome to my page about my son Akshay. Akshay is 7 and was diagnosed with autism July of 2006. He has a younger sister two wonderful parents and an amazing support network of family, friends, therapist, teachers and doctors who are joining us in our journey to recovery. I hope you find my entries helpful and sometimes entertaining as I take you through Akshay's wonderful world.
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