Connor's Doctor is a good family practice Doctor. She has been great with both of my kids, but lately, we just aren't seeing eye-to-eye. I asked at the beginning of the school year if we could separate shots particularly the MMRV. She laughed (that's right, laughed) at me and said, "You know they are safe and don't cause Autism, right?". "They don't even make them separately". Do I blame shots for causing Connor's Autism? Not necessarily, but I like to proceed with caution. I like the middle of the road.
I like to think that I exercise reason when it comes to Autism and I don't drink the "we've got a cure for Autism Kool-Aid". I have hope and I strive to improve Connor's quality of life and constantly raise the bar so that he might have the opportunity to do more. I guess I stayed with my current Doctor in part to keep some semblance of normal, but I am not sure normal works for us any more. Especially when issues we thought we had beat re-occur like some constant nightmare.
Like most parents with a child or children on the Autism Spectrum, I have read my share (and more) of articles on Autism, what causes it, how to treat symptoms of and even how to "cure" Autism. I have become seriously offended by those who would hope to offer us a "cure" and have even chastised at least one person for going as far as to say that she knew someone who's Autistic child could not speak and then "miraculously" could after taking her supplement. It sickens me that there are so many that would sell us anything to make a dollar off of our desire to help our children and they are out there in many forms.
Recently, I met a Doctor who specializes in treating children with Autism. He has two of his own. I really dragged my feet on meeting him and approached our introduction with my shields up. Another snake-oil salesman, I thought. Awesome. Well, I'm not drinking his brand of Kool-Aid no matter how great it sounds. But....... he IS middle of the road about treating the symptoms of Autism. He doesn't make promises of cures. He doesn't laugh at concerns. He listens. Long story short we have a appointment on Monday because sometimes it is about treating the symptoms, so that he can have a better quality of life and we can continue to raise the bar so that he will have the opportunities that he should have. I am still proceeding with caution but maybe taking a little sip of the Kool-Aid sometimes may not be a bad thing after all.
Friday, April 6, 2012
Saturday, March 3, 2012
Save the Date
I have been thinking about the planning that must be done for next year and the beginning of Connor's IEP season. It started with a email from Connor's consultant. "Do you have plans to put him in some sort of summer tutoring to keep up his skills?", "I would like to start setting some goals for his IEP in May". Those questions make my skin crawl and start the onset of parenoia that commonly begins the IEP season. Thoughts like "I should have been thinking of goals two weeks ago!", "I didn't even think about summer tutoring let alone who was going to provide it!", "I need to talk to next years teacher, replace our current consultant, talk to the principal...........etc. infinity for eternity." On the other hand, my mind also wanders to happier, crazier places. There has got to be a silver lining to the dark, dreaded cloud that is IEP season. Why not have a I Survived the IEP Season Party? So I talked to my other local Autism Mommy home girls. They liked my idea too! So here a copy of the official invite. Wish you could join us!
You are officially invited to the I Survived IEP Season After Party!
Got your ducks in a row? Then Join us for madcap merriment and wine tasting!
When: May 17th, 2012 @ 7pm
Where: Bendetto's Wine Bar
A official I Survived IEP Season 2012 t-shirt will be given to the person with the "best" worst IEP meeting story!
Dear Lunch Ladies......
Dear Lunch Ladies,
I am writing today re: Connor's freakish eating habits. Rather than meet with you individually at a time of your convenience, I have decided to make multiple copies of my short course in Autism and Eating Habits 101. You will each receive a copy and I will file several for the poor &%#$*!@ who are your successors. Connor's aide has told me that you question why I don't just pack his lunch if he won't eat cafeteria food.
A. Connor eats randomly and stores his food (not unlike a camel stores water.) What he likes one month he may act as if it is poison for the next several months. Then, eventually, he will decide he likes it again.
B. Packing his food doesn't mean squat to him other than Mommy sent another thing to carry to school filled with stuff he isn't going to eat today either. Now I can send a loaf of bread and a box of crackers to school or you can provide him with these things which I am sure he will guzzle down, but I will also have to pack enemas for you to give him when he is so constipated he can't go potty for a week. I think you find the need to keep his bowels working trumps your happiness at seeing him chowing down.
C. Autistic children who have eatings problems (a whole lot of our kids do) don't just develope these problems overnight. I have been watching Connor's weight and growth along with his doctor his whole life. Just because you don't see him eating doesn't mean he doesn't eat enough at home or according to my aide, at school to enable him to gain weight and grow. I have the records to prove it. I have been trying to counteract his bizarre eating for a long time now and have reached a "happy place" by giving him extra fiber supplements (bowel production) and multivitamins (insurance and assurance) and we have a system to count down "bites" of food.
In short, what we are doing works. He continues to grow. I apologize that he doesn't eat the food that is far more nutritionally unbalanced than what he gets at home but there you are. Never fear, there are many more children who will appreciate the stuff you serve up.
Sincerely,
Connors Mom
I am writing today re: Connor's freakish eating habits. Rather than meet with you individually at a time of your convenience, I have decided to make multiple copies of my short course in Autism and Eating Habits 101. You will each receive a copy and I will file several for the poor &%#$*!@ who are your successors. Connor's aide has told me that you question why I don't just pack his lunch if he won't eat cafeteria food.
A. Connor eats randomly and stores his food (not unlike a camel stores water.) What he likes one month he may act as if it is poison for the next several months. Then, eventually, he will decide he likes it again.
B. Packing his food doesn't mean squat to him other than Mommy sent another thing to carry to school filled with stuff he isn't going to eat today either. Now I can send a loaf of bread and a box of crackers to school or you can provide him with these things which I am sure he will guzzle down, but I will also have to pack enemas for you to give him when he is so constipated he can't go potty for a week. I think you find the need to keep his bowels working trumps your happiness at seeing him chowing down.
C. Autistic children who have eatings problems (a whole lot of our kids do) don't just develope these problems overnight. I have been watching Connor's weight and growth along with his doctor his whole life. Just because you don't see him eating doesn't mean he doesn't eat enough at home or according to my aide, at school to enable him to gain weight and grow. I have the records to prove it. I have been trying to counteract his bizarre eating for a long time now and have reached a "happy place" by giving him extra fiber supplements (bowel production) and multivitamins (insurance and assurance) and we have a system to count down "bites" of food.
In short, what we are doing works. He continues to grow. I apologize that he doesn't eat the food that is far more nutritionally unbalanced than what he gets at home but there you are. Never fear, there are many more children who will appreciate the stuff you serve up.
Sincerely,
Connors Mom
Monday, October 17, 2011
Happy Anniversary
Today is an anniversary of sorts. Three years ago Connor was a happy little boy who played by himself, showed a great facination for playing cards, and other random items. He always knew how many of what he had and if some were missing we searched until we found them. He smiled but didn't speak. We never thought we would see the end of diapers......Three years ago he was diagnosed as being Autistic.
As parents, we were just beginning to figure out how to deal with his diagnosis. We were so bent on figuring out how to get the hours of ABA therapy in that the psychiatrist reccommended. So frightened that we weren't doing enough or the right things for him.
Three years later...Connor is still a happy little boy. He is beginning to play with and initiate play with others. He plays with his toys, loves superheroes, the Wii (who doesn't?), jumping on the trampoline, playing outside, and the list goes on. He still has those big heart melting smiles. He has such a good vocabulary (selectively used) I can't quite refer to him as non-verbal autistic. He says "no" particularly well (little stinker!) We did see the the end of diapers thank goodness! Now I just need him to flush the toilet. Ah well... its an imperfect world.
As for Marc and I.... we figured out that what works for him is time and patience along with an aide who has very good instincts and speech therapists who love what they do. We assume that he can learn as well as his peers, and deal with what he can't do as it comes up. We give him the tools to give him extra help in school as he needs it. We help to bring awareness to the school and church community by helping to start programs to benefit him and other children with disabilities because my Conor isn't the only child with a disability, and maybe we can help a few "newbie" parents figure it out or at least let them know that they aren't alone.
We've all come a long way in three years, so happy anniversary to us and I look forward to many more happy anniversaries.
As parents, we were just beginning to figure out how to deal with his diagnosis. We were so bent on figuring out how to get the hours of ABA therapy in that the psychiatrist reccommended. So frightened that we weren't doing enough or the right things for him.
Three years later...Connor is still a happy little boy. He is beginning to play with and initiate play with others. He plays with his toys, loves superheroes, the Wii (who doesn't?), jumping on the trampoline, playing outside, and the list goes on. He still has those big heart melting smiles. He has such a good vocabulary (selectively used) I can't quite refer to him as non-verbal autistic. He says "no" particularly well (little stinker!) We did see the the end of diapers thank goodness! Now I just need him to flush the toilet. Ah well... its an imperfect world.
As for Marc and I.... we figured out that what works for him is time and patience along with an aide who has very good instincts and speech therapists who love what they do. We assume that he can learn as well as his peers, and deal with what he can't do as it comes up. We give him the tools to give him extra help in school as he needs it. We help to bring awareness to the school and church community by helping to start programs to benefit him and other children with disabilities because my Conor isn't the only child with a disability, and maybe we can help a few "newbie" parents figure it out or at least let them know that they aren't alone.
We've all come a long way in three years, so happy anniversary to us and I look forward to many more happy anniversaries.
Sunday, September 4, 2011
Walkin the Walk
WALK NOW FOR AUTISM SPEAKS 2011
Its that time of year again that some of us have marked on our calendars with such importance as holidays and vacations that we note on our calendars religiously. That special time of year when our friends and family (and extended family) gather round not for large meal, but united in supporting a common cause. Fighting Autism. Standing together to raise funds to defeat ignorance, find answers and provide a light at the end of the tunnel for those parents families that are just starting this journey. 
Honestly, I am no social butterfly. I hate asking anybody for anything with a passion. Autism changes your family though as those of you with autistic children know. Now you can see with a different set of eyes and as for myself; it has become crystal clear how lucky we are. Prior to participating in this walk I had no idea that so many families had no guide, no "plan" and nobody showing them which way to turn. I never knew how low goverment funding was. The real shock came when I attended my sons preschool orientation at the autism program he attended last year. The questions that were asked of his teachers and later of me were frightening to me because I remember being there and oh do I remember feeling the way that they did. Its a feeling that comes back so intensely that it will well up in me a stream of tears that just keep on coming. So, for my son, for your sons and daughters, for the sanity of all the parents of diagnosed children now and the ones that unfortunately will be, I will ask for your support.
Support me and Team Rainbow at:
Saturday, August 27, 2011
A Means To An End
Connors first week at school is going well. VERY WELL. In fact, his teacher told me that she wanted to use his aide to help the other children in the classroom from time to time since he is able to work well independently. GREAT! You bet! My aide is your aide, at least until the money starts to run out and then we will talk about only having her there a half day at which point I will remind you of how you thought he was able to work without her. :)
A means to an end.....Mrs. G, Connors teacher told me how suprised she was that he fit in/worked so well with the other children. It wasn't at all what she thought it would be (uh-huh, I do recall mentioning that) and that she was so glad that she listened to Paulette who also said he would do well at this school (uh-huh I said that too). She felt that this school was absolutely the best fit for him hands down (uh-huh I definately recall saying that). This is what I would like to have responded with: Yes Mrs.G he seems to really be doing well here, but I kind of had that figured out and consulted with his preschool teachers and director half a million times prior to signing him up here. You see, I feel I know him best. We have history. Heck, i've known him since he was concieved, we go way back. That and the fact that I am a stay at home mom and I with him practically 24/7. Share the aide? Why sure! Didn't you know that she is really here for your comfort? I knew that you would figure out that we didn't need her there 5 days a week 6 1/2 hours a day. In fact, most of the things that I have done were for your comfort level, the principals and the rest of the staff. You are smart people though and you will continue to learn from my son, just as I have. I can wait.
Paulette (my sons preschool director) is every bit the experienced professional. People SHOULD listen to her opionion. Thank God I did.I am grateful that Mrs. G. did but some mean little part of me says that it would be nice to be credited with having some reliable input though and a brain. You know what? My son is doing well totally mainstreamed, ready to go to school, visably interested, participating with the others, and that is worth more that I can concieve of. Its all just a means to an end.
A means to an end.....Mrs. G, Connors teacher told me how suprised she was that he fit in/worked so well with the other children. It wasn't at all what she thought it would be (uh-huh, I do recall mentioning that) and that she was so glad that she listened to Paulette who also said he would do well at this school (uh-huh I said that too). She felt that this school was absolutely the best fit for him hands down (uh-huh I definately recall saying that). This is what I would like to have responded with: Yes Mrs.G he seems to really be doing well here, but I kind of had that figured out and consulted with his preschool teachers and director half a million times prior to signing him up here. You see, I feel I know him best. We have history. Heck, i've known him since he was concieved, we go way back. That and the fact that I am a stay at home mom and I with him practically 24/7. Share the aide? Why sure! Didn't you know that she is really here for your comfort? I knew that you would figure out that we didn't need her there 5 days a week 6 1/2 hours a day. In fact, most of the things that I have done were for your comfort level, the principals and the rest of the staff. You are smart people though and you will continue to learn from my son, just as I have. I can wait.
Paulette (my sons preschool director) is every bit the experienced professional. People SHOULD listen to her opionion. Thank God I did.I am grateful that Mrs. G. did but some mean little part of me says that it would be nice to be credited with having some reliable input though and a brain. You know what? My son is doing well totally mainstreamed, ready to go to school, visably interested, participating with the others, and that is worth more that I can concieve of. Its all just a means to an end.
Monday, August 22, 2011
School Daze..........
Well...... here I am on the brink of Connors first day of Kindergarten. Tons of work since the beginning of February to get him into this school and here we finally are and I still believe it will all be worth it. He needs to be at that school in order to thrive. I know it. Don't ask me how, I just know it.
First of all I must give credit where credit is due. "Team Connor" (and you better believe its a team) is awesome this year. While it saddened me greatly to leave a fantastic program with teachers that were remarkable, his kindergarten teacher is special she was when my daughter was in her class, but lately I have come to see her in a new light. This lady was quick to step up to the plate when I asked her how she felt about Connor attending school there. She offered to observe him in his current program. She talked with his current teacher. She attended several meetings and an teacher inservice to learn more about the Autism Spectrum and how it related to my son. She has asked on many occasions what she might do to better accomodate him in the classroom. Does she have special needs certification of any kind? Nope and thats fine by me. I am not looking for special certification,I am looking for understanding, willingness to learn about my son and his ways and someone who is willing to get past Autism. My son is not the big scary monster, the word Autism is. The principal at the school; young, naive, willing to try something new even when his plate is full as a new first time principal at our school. That makes him awesome in my book. To all the other teachers in the school who will be working with Connor and who took the time to attend the inservice; I also thank you for stepping up to the plate. Thank you for expressing your desire to help him succeed in this school. You will never know how much I appreciate it.
I just met Connors aide today. Sarah. Experienced, smart, a real workier bee. I was completely impressed that rather than have a firm plan on how she would work with Connor, she will let him take the lead. Really, does it get any better?
So, if it all goes wrong, if the school plan falls all to pieces at least I will have these precious moments of hope that I have right now. Oh yeah, and that margarita in the fridge.............;)
First of all I must give credit where credit is due. "Team Connor" (and you better believe its a team) is awesome this year. While it saddened me greatly to leave a fantastic program with teachers that were remarkable, his kindergarten teacher is special she was when my daughter was in her class, but lately I have come to see her in a new light. This lady was quick to step up to the plate when I asked her how she felt about Connor attending school there. She offered to observe him in his current program. She talked with his current teacher. She attended several meetings and an teacher inservice to learn more about the Autism Spectrum and how it related to my son. She has asked on many occasions what she might do to better accomodate him in the classroom. Does she have special needs certification of any kind? Nope and thats fine by me. I am not looking for special certification,I am looking for understanding, willingness to learn about my son and his ways and someone who is willing to get past Autism. My son is not the big scary monster, the word Autism is. The principal at the school; young, naive, willing to try something new even when his plate is full as a new first time principal at our school. That makes him awesome in my book. To all the other teachers in the school who will be working with Connor and who took the time to attend the inservice; I also thank you for stepping up to the plate. Thank you for expressing your desire to help him succeed in this school. You will never know how much I appreciate it.
I just met Connors aide today. Sarah. Experienced, smart, a real workier bee. I was completely impressed that rather than have a firm plan on how she would work with Connor, she will let him take the lead. Really, does it get any better?
So, if it all goes wrong, if the school plan falls all to pieces at least I will have these precious moments of hope that I have right now. Oh yeah, and that margarita in the fridge.............;)
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