Here is Nateman and his portable nebulizer mask. Neve always starts screaming, "ell-fin" everytime we get it out which is twice a week when he is healthy, and more when he is ill and has trouble breathing.
Saturday, August 8, 2009
Tuesday, August 4, 2009
Lance is out of retirement....
Nate is rockin a new bigger bike and helmet now (thanks to an early birthday gift from granny E). He is still a bit hesitant as it is harder for him to control and he really likes using the brakes, lol.
Saturday, August 1, 2009
No thank you, Mr. Richard Gere......
Thanks to the recommendation of a few good friends, we finally found an allergist for Nate that we like! whew! That took a lot of looking, and lots of BAD pediatric allergists. We retested using skin tests and the two strongest reactions were to PEANUT and DOG- both VERY severe. SOY also showed up this time (a new one)- and due to Nate's restricted diet he has been soy-free for over 6 months now anyway, so we are good there. Gone were EGG and CAT- interesting. Seasonal all were there, but mild, including trees...but GRASS was moderate. The other new one that threw us for a loop was a severe reaction to..GERBIL. lol. I guess they test for all classroom type allergens in children, but I thought that was funny. Maybe they will test for LION and SQUIRREL next time. ha! Um..trying to think what else...no reactions to fish or shellfish, so that is good. He doesn't eat any of that currently, but good to know for cross contamination and accidental exposures.
Friday, July 31, 2009
PORTNOY VS. SCHOOL DISTRICT
WE DID IT! WE CHALLENGED THE SCHOOL DISTRICT AND WE WON. WOO-HOO!!!!!
We have been going back and forth for months and months with evaluations and meetings and a whole lot of in your face, "Um, No" 's.
I know Aaron is someone that avoids confrontation at all costs- he grew up this way and he actually does that now for a living, he is the peacemaker of the Insurance Claims world. Well, fortunately, I am am NOT. I don't work for anyone except for my son and I love a good fight. I can think quickly on my feet and I love to read and educate myself on subjects that put me in a position of power. Unfortunately that is exactly what is needed, POWER.
Education is POWER and I knew that from the get-go. The school district is a bureaucracy and they assume you know nothing. They make sure they hand you a little tiny pamphlet that has basic information on it as to where to go to obtain information on your rights (not your actual rights of course because they don't want you to find that out easily!!) They make you sign saying that you received said pamphlet, and that is that.
I think I purchased every book I could find on special education law in Ohio and the rights of Autistic children under IDEA(Individuals with Disabilities Education Act)- which is the law used to provide a child with Autism a special education. I attended support groups and seminars on how to navigate and beat the system. I learned how productive a special education attorney can be and I now know where to turn if I ever need for consultation again. I spoke with parents with children of all ages that have beat the system. I basically decided I wasn't going to be railroaded..EVER. I will hold the cards and never settle for anything less. I will be objective and consider the opinion of school "experts", but I will never let them sway my decisions, as I know they are opinions backed by money and time, NOT the best interest of NATE. I will try not to burn bridges along the way- but I now know they see me comin. I have set a precedence of what is to be expected and they will be begging to work with Aaron instead..hehehe. I look at it this way...they will hate me. They will roll their eyes. They will be annoyed by my letters, my insistence, and my interjections. BUT..they will eventually respect me. They will some day see that I am involved with my child. I have dedicated my adult life to his education and care and I will push everyone around me to help Nate be all that he is capable of being. I will settle for nothing less.
We are not supposed to talk about our IEP meetings..specifically...but I will say that Nate is getting speech therapy multiple times a week, with a therapist that is going to become part of our team. She will coordinate all our programs so that they are a cohesive and consistent across all therapists. Nate will also we taught by therapists trained in the fields of Autism, American Sign Language, and Picture Exchange Communication. Nate will also be in a room free of all food and animal allergens. He will be under the care of staff trained in the administration of his emergency medications.
We are optimistic about the upcoming school year. Our goal is to main stream Nate in 2011/2012. We are well on our way to getting there. Cross your fingers for Nateman and send him encouragement. He is facing an uphill battle and he needs all the help he can get.
We have been going back and forth for months and months with evaluations and meetings and a whole lot of in your face, "Um, No" 's.
I know Aaron is someone that avoids confrontation at all costs- he grew up this way and he actually does that now for a living, he is the peacemaker of the Insurance Claims world. Well, fortunately, I am am NOT. I don't work for anyone except for my son and I love a good fight. I can think quickly on my feet and I love to read and educate myself on subjects that put me in a position of power. Unfortunately that is exactly what is needed, POWER.
Education is POWER and I knew that from the get-go. The school district is a bureaucracy and they assume you know nothing. They make sure they hand you a little tiny pamphlet that has basic information on it as to where to go to obtain information on your rights (not your actual rights of course because they don't want you to find that out easily!!) They make you sign saying that you received said pamphlet, and that is that.
I think I purchased every book I could find on special education law in Ohio and the rights of Autistic children under IDEA(Individuals with Disabilities Education Act)- which is the law used to provide a child with Autism a special education. I attended support groups and seminars on how to navigate and beat the system. I learned how productive a special education attorney can be and I now know where to turn if I ever need for consultation again. I spoke with parents with children of all ages that have beat the system. I basically decided I wasn't going to be railroaded..EVER. I will hold the cards and never settle for anything less. I will be objective and consider the opinion of school "experts", but I will never let them sway my decisions, as I know they are opinions backed by money and time, NOT the best interest of NATE. I will try not to burn bridges along the way- but I now know they see me comin. I have set a precedence of what is to be expected and they will be begging to work with Aaron instead..hehehe. I look at it this way...they will hate me. They will roll their eyes. They will be annoyed by my letters, my insistence, and my interjections. BUT..they will eventually respect me. They will some day see that I am involved with my child. I have dedicated my adult life to his education and care and I will push everyone around me to help Nate be all that he is capable of being. I will settle for nothing less.
We are not supposed to talk about our IEP meetings..specifically...but I will say that Nate is getting speech therapy multiple times a week, with a therapist that is going to become part of our team. She will coordinate all our programs so that they are a cohesive and consistent across all therapists. Nate will also we taught by therapists trained in the fields of Autism, American Sign Language, and Picture Exchange Communication. Nate will also be in a room free of all food and animal allergens. He will be under the care of staff trained in the administration of his emergency medications.
We are optimistic about the upcoming school year. Our goal is to main stream Nate in 2011/2012. We are well on our way to getting there. Cross your fingers for Nateman and send him encouragement. He is facing an uphill battle and he needs all the help he can get.
Saturday, July 11, 2009
My Life Is…
It has taken me 2 years now, but I noticed something about my life. I noticed that when I look at all I am dealing with in family, home, and with my kids… when I looked at it all or even a part of it, I found myself saying, “Wow, this is really hard!”.
I started to note each time I called my life “hard,” and when I told someone that things were “hard,” and I even noted when I thought that word. Calming Nate down from an episode is hard. Traveling was hard. Miscommunications with Nate were hard. Finding time for Neve was hard. Communicating with Aaron was hard. Findingtime to unwind and enjoy friends is hard. Organizing Nate's schooling and therpaies is hard. Getting Nate to and from all schools and tehrpaies with a little one in tow is hard. I also noticed that each day I was getting up later and later, making myself late I might add, over and over in a futile attempt to postpone getting up and dealing with my “hard” life.
Wow, “hard” was a powerful word and it was running rampant in my thoughts. It is almost a default word, a word I felt stuck with. I have decided to try a little experiment. It seems simple really. I will give up using the word “hard” to describe everything and I will find a new word or phrase to replace it with.
Is my life hard? There are plenty of people who try to agree with me that my life really was hard, because in their eyes they completely believed that what I had was much harder than what they had. I didn’t care. I just couldn’t stand living with that thought about my kids and my family any more. Is having Nate really hard? Is Neve hard? I am dropping the word “hard” out of my vocabulary.
Now, what could fill that space? What would best describe my life? And how exciting to stand in front of a blank sheet of paper titled “My Life Is…” and be able to choose the next word. It is a little daunting. What would I choose to call my life?
I don’t take the task lightly. I am looking from many angles. One thing I see is that I am managing a lot of unexpected circumstances. My life hasn’t gone the way I expected and I found myself wondering if anyone’s life goes the way that they expect. That would be so boring! I mean really! What if your life turned out exactly how you thought it would? My life could never be called boring. It is quite the opposite. Exhausting, yes, but never boring. That was it! I am writing the words I will now use to define and describe my life.
My life is an unexpected journey!
It was simple and true, and so much more empowering than what I called my life before.
Sometimes we get negative about things that we could look at as positives instead. We can choose to complain about how awful the fight was to get out the door this morning, or be grateful that we even have this amazing child in our lives at all. My children are the best things that ever happened to me. Autism and all.
I think this is a process- yes, giving up this kind of negative thinking is hard! But I don’t think that is necessarily a bad thing. Having a baby is hard too, but that makes it all the more rewarding.
I started to note each time I called my life “hard,” and when I told someone that things were “hard,” and I even noted when I thought that word. Calming Nate down from an episode is hard. Traveling was hard. Miscommunications with Nate were hard. Finding time for Neve was hard. Communicating with Aaron was hard. Findingtime to unwind and enjoy friends is hard. Organizing Nate's schooling and therpaies is hard. Getting Nate to and from all schools and tehrpaies with a little one in tow is hard. I also noticed that each day I was getting up later and later, making myself late I might add, over and over in a futile attempt to postpone getting up and dealing with my “hard” life.
Wow, “hard” was a powerful word and it was running rampant in my thoughts. It is almost a default word, a word I felt stuck with. I have decided to try a little experiment. It seems simple really. I will give up using the word “hard” to describe everything and I will find a new word or phrase to replace it with.
Is my life hard? There are plenty of people who try to agree with me that my life really was hard, because in their eyes they completely believed that what I had was much harder than what they had. I didn’t care. I just couldn’t stand living with that thought about my kids and my family any more. Is having Nate really hard? Is Neve hard? I am dropping the word “hard” out of my vocabulary.
Now, what could fill that space? What would best describe my life? And how exciting to stand in front of a blank sheet of paper titled “My Life Is…” and be able to choose the next word. It is a little daunting. What would I choose to call my life?
I don’t take the task lightly. I am looking from many angles. One thing I see is that I am managing a lot of unexpected circumstances. My life hasn’t gone the way I expected and I found myself wondering if anyone’s life goes the way that they expect. That would be so boring! I mean really! What if your life turned out exactly how you thought it would? My life could never be called boring. It is quite the opposite. Exhausting, yes, but never boring. That was it! I am writing the words I will now use to define and describe my life.
My life is an unexpected journey!
It was simple and true, and so much more empowering than what I called my life before.
Sometimes we get negative about things that we could look at as positives instead. We can choose to complain about how awful the fight was to get out the door this morning, or be grateful that we even have this amazing child in our lives at all. My children are the best things that ever happened to me. Autism and all.
I think this is a process- yes, giving up this kind of negative thinking is hard! But I don’t think that is necessarily a bad thing. Having a baby is hard too, but that makes it all the more rewarding.
Friday, June 12, 2009
GOOOOOOOOO NATE!!!
Nate finally cut out a circle on his own today. YAY NATE!!!!! We have been working with scissors for quite some time...but the progress has been slow.. Something just clicked today, after a week long stretch of high fevers. Maybe he is fighting through some stuff? Maybe it is clearing some "fog"? We hope so---and way to go big guy! You make us so proud!
Tuesday, June 9, 2009
headache, rash, Autism, all the same, no?
Sanofi Pasteur's (one of the leading vaccine manufacturers) new package insert for the DTaP NOW mentions autism as a side effect (Page 11)
among
in particular: http://www.vaccines hoppe.com/ image.cfm? doc_id=5966& image_type= product_pdf
Yea...nice side effect. A side effect is a headache, not a lifelong neurological condition, but THANKS!
among
in particular: http://www.vaccines hoppe.com/ image.cfm? doc_id=5966& image_type= product_pdf
Yea...nice side effect. A side effect is a headache, not a lifelong neurological condition, but THANKS!
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