Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Welcome, Laurie!! It sounds like you are at a beginning point on your journey! I am so impressed that you caught the symptoms early and got help early on - you didn't let the doctors slough off your concerns! That's just great!! I didn't catch my son's symptoms until later, and then I thought he just had autistic tendencies. I didn't seek help until he was 3 years old because I figured that's when the schools were mandated to help. I'm sure your little boy will progress with early intervention. You asked how we handled it when our child was first diagnosed. I was devastateed. That surprised me because I suspected - was almost certain - that he had autism. But I guess when I saw it in black and white, I realized that what I envisioned for my son when he was born wasn't going to happen. But with the appropriate help and supports, my son's ability to communicate has improved tremendously. About whether or not to tell others, and when. Well, I always told on a need-to-know basis - even when strangers came up to me and said that all my son needed was a good spanking. Of course, those comments drove me crazy, but why would I then tell such a rude person about my son's private medical history? I don't care if rude people (or not-so-rude people who keep their comments and opinions to themselves) think I'm a bad parent. I think I'm a pretty good parent (not perfect though), and I focus on getting my son the help he needs. But I do tell people who might need to know, like Sunday school teachers - who might think my son isn't paying attention or is bad if I don't explain his behavior. Practically speaking, would telling a certain person help your son? That should be part of the criteria of whether or not to tell. So I wouldn't tell a stranger at the store, but I would tell an adult who will have sustained contact with my son. One thing that I haven't done but wondered if I should, should we tell his peers, such as his classmates? Would that knowledge help them understand my son, or would it ostrasize him more? It's hard to say. You found a great group of people here, who are willing to share knowledge. You are starting the services your son needs early. You have physicians who are giving good advice. It sounds like you are on the right track! I look forward to hearing more from you. Feel free to give good reports, or ask questions. Other parents have shared difficult moments and their children's victories. Chris > > Hi Everyone, > > My name is Laurie, and my husband and I live in Twinsburg with our > 19 month old son, Cameron. I am a pediatric nurse, and have been a > stay at home mom since Cameron was born. My husband is an > optometrist. Cameron was born healthy, and met his milestones as he > should have until about 10-11 months old, when I felt he was lacking > in some of his social communication; no pointing, not always > responding to his name, not playing peek-a-boo, and not waving or > clapping. Our pediatrican told us to keep on eye on him, since > testing couldn't be done until around 18 months old. At 17 months > old, I couldn't wait anymore. We went to a developmental > pediatrician who basically asked us a bunch of questions and told us > Cameron needed speech and OT. She did no testing with him. So, we > found another developmental pediatrician who met with us for an > hour, and scheduled two 1-hour testing sessions with Cameron. We've > had 1 testing session so far, and go back this week for the 2nd. She > already told us that based on her findings so far, that Cameron > falls in the PDD-NOS category for diagnosis. This was not a surprise > to us, but still difficult to actually hear the words. She said to > continue with the speech and OT, and recommended some home-based > intervention through the Monarch school or Cleveland Clinic Center > for Autism. Because of Cameron's age and less severe diagnosis, we > chose the Monarch school. They are coming out Monday to discuss > their services. > > I have great friends who love us like family, but they can't truly > understand what we are going through. We certainly know that things > could be a lot worse, and we are grateful that Cameron is fuctionig > at the level he is, but it is still hard to watch him try to > communicate, and not be able to. It is hard to see all of my > friend's kids talking and playing with toys appropriately, while > Cameron still makes baby noises and would rather open and close > cabinet doors than play. At his age, he can still get away with > some of the abormal behaviors and speech because people still think > it's " cute. " But as he gets older, it becomes more apparent that he > is differnt than other kids. My husband and I find ourselves > feeling the need to " explain " what he has, so that other people > understand, and not just think, " what is wrong with that kid? " When > people know, they seem much more understanding and accepting of him. > We aren't sure that is the best way to handle this, but it's our way > and it seems to work for us. How did you all handle it when your > child was first diagnosed? Did you tell people, to help " explain " > the behaviors your kids were displaying, or did you wait for people > to ask, or did you just not say anything? > > Other than speech and OT, we are involved in Kindermusik and My Gym, > and have lots of play dates with our friends. Some days we are so > busy, I don't even have time to think about what we are going > through. Some days are bad, and it's all I can think about. So I > hope this group is a way to share those hard days, as well as the > triumphs we will have along the way. > > Thanks for reading this, and I hope to get to know you all soon! > > Laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Hi Laurie! Welcome to the group! Reading your post made me remember what our first diagnosis was like.. like you we suspected when our son was just about a year old.. but we kept hearing oh he's a boy they develop slower..and he's the 2nd child.. so your daughter is probably doing all the talking for him..and you can't compare him to his sister.. but luckily we were able to find a doctor who listened to our concerns and Kiernan was diagnosed at just over 2 years old...wow.. almost 4 years ago now! As to your questions.. when we first found out it was a roller coaster of emotions.. we were devastated.. not knowing what the future would hold for our son or us.. but at the same time it was a relief that it wasn't just in our heads that there was an issue and it now had a name and we could deal with it.. We did make a point of letting all of our family members know as well as friends so that they would know... not really to explain his behavior but so they would understand that he wasn't going to be just like all the other kids and that yes.. he was going to behave differently at times.. but it didn't mean he was being bad or that we weren't good parents.. it also helps when they see you trying different techniques to calm him or restrain him.. or why he won't play with their children.. and our parents really had a hard time with it.. they went thru a roller coaster like we did.. just on a different level.. it wasn't until not to long ago when my mother-in- law said she finally realized that he wouldn't just wake up normal one day.. As for other people.. it depends on my mood... I mean of course people at church and that know... but there are times when I feel it necessary to say something to those that want to make rude comments.. only because if they are willing to say it loud enough for me to hear..or directed at us.. then i'm going to say something... it may just be that they have never seen a child with Autism before.. on any level of the spectrum.. personally though I have seen typical children that act worse in public places than some of our children! I don't feel there is anything wrong with educating someone when done in a polite manner.. the children in my son's class have been told so that they can learn about the differences and learn to be accepting of not only him but all children with differences.. why not do the same with adults? With physical disabilities people can see right away something is wrong..nothing has to be said to explain anything.. with mental and neurological disabilities there isn't a physical sign.. and unfortunately in our society there isn't alot of acceptance and tolerance.. and that is what our children are going to need.. Well enough rambling from me... I guess the best way I can leave it is.. do what you are comfortable with... don't feel you have to explain your child's behavior.. but don't feel guilty if you do.. there is nothing wrong with letting someone else know that your child is different.. if anything it may make them think before opening their mouths in the future as well as educating them a bit about Autism.. Again, Welcome! > > Hi Everyone, > > My name is Laurie, and my husband and I live in Twinsburg with our > 19 month old son, Cameron. I am a pediatric nurse, and have been a > stay at home mom since Cameron was born. My husband is an > optometrist. Cameron was born healthy, and met his milestones as he > should have until about 10-11 months old, when I felt he was lacking > in some of his social communication; no pointing, not always > responding to his name, not playing peek-a-boo, and not waving or > clapping. Our pediatrican told us to keep on eye on him, since > testing couldn't be done until around 18 months old. At 17 months > old, I couldn't wait anymore. We went to a developmental > pediatrician who basically asked us a bunch of questions and told us > Cameron needed speech and OT. She did no testing with him. So, we > found another developmental pediatrician who met with us for an > hour, and scheduled two 1-hour testing sessions with Cameron. We've > had 1 testing session so far, and go back this week for the 2nd. She > already told us that based on her findings so far, that Cameron > falls in the PDD-NOS category for diagnosis. This was not a surprise > to us, but still difficult to actually hear the words. She said to > continue with the speech and OT, and recommended some home-based > intervention through the Monarch school or Cleveland Clinic Center > for Autism. Because of Cameron's age and less severe diagnosis, we > chose the Monarch school. They are coming out Monday to discuss > their services. > > I have great friends who love us like family, but they can't truly > understand what we are going through. We certainly know that things > could be a lot worse, and we are grateful that Cameron is fuctionig > at the level he is, but it is still hard to watch him try to > communicate, and not be able to. It is hard to see all of my > friend's kids talking and playing with toys appropriately, while > Cameron still makes baby noises and would rather open and close > cabinet doors than play. At his age, he can still get away with > some of the abormal behaviors and speech because people still think > it's " cute. " But as he gets older, it becomes more apparent that he > is differnt than other kids. My husband and I find ourselves > feeling the need to " explain " what he has, so that other people > understand, and not just think, " what is wrong with that kid? " When > people know, they seem much more understanding and accepting of him. > We aren't sure that is the best way to handle this, but it's our way > and it seems to work for us. How did you all handle it when your > child was first diagnosed? Did you tell people, to help " explain " > the behaviors your kids were displaying, or did you wait for people > to ask, or did you just not say anything? > > Other than speech and OT, we are involved in Kindermusik and My Gym, > and have lots of play dates with our friends. Some days we are so > busy, I don't even have time to think about what we are going > through. Some days are bad, and it's all I can think about. So I > hope this group is a way to share those hard days, as well as the > triumphs we will have along the way. > > Thanks for reading this, and I hope to get to know you all soon! > > Laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 >... I guess the best way I can leave it >is.. do what you are comfortable with... don't feel you have to >explain your child's behavior.. but don't feel guilty if you do.. >there is nothing wrong with letting someone else know that your child >is different.. if anything it may make them think before opening >their mouths in the future as well as educating them a bit about >Autism.. - You're right. There is nothing wrong with educating people about autism and the behaviors that go along with autism. I guess I just don't have the energy to educate strangers! It's hard enough dealing with the biases of co-workers and misperceptions of friends and family! You're a stronger woman than I!! :-). What have you found helps the most when dealing with other's prejudice? Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hello Laurie, welcome aboard. My name is Ross and, my family and I live in Broadview Heights. My fourth child Marco who is now four was diagnosed with ASD in June. Although my wife who is an RN suspected at an early age, our long time and trusted pediatrican along with many family members told us not to label him too early. Anyway by the age of three it was obvious to us the my son was austic and we went to Rainbow and our school system for help. I am now a stay at home dad and Marco gets OT and speech therapy at Rainbow. Along with attending Steppingstone Developmental Preschool fours days a week. Although we are just begining our journey on the spectrum. Feel free to email me with any questions or if you just want to chat. Ross Laurie <laurie4098@...> wrote: Hi Everyone,My name is Laurie, and my husband and I live in Twinsburg with our 19 month old son, Cameron. I am a pediatric nurse, and have been a stay at home mom since Cameron was born. My husband is an optometrist. Cameron was born healthy, and met his milestones as he should have until about 10-11 months old, when I felt he was lacking in some of his social communication; no pointing, not always responding to his name, not playing peek-a-boo, and not waving or clapping. Our pediatrican told us to keep on eye on him, since testing couldn't be done until around 18 months old. At 17 months old, I couldn't wait anymore. We went to a developmental pediatrician who basically asked us a bunch of questions and told us Cameron needed speech and OT. She did no testing with him. So, we found another developmental pediatrician who met with us for an hour, and scheduled two 1-hour testing sessions with Cameron. We've had 1 testing session so far, and go back this week for the 2nd. She already told us that based on her findings so far, that Cameron falls in the PDD-NOS category for diagnosis. This was not a surprise to us, but still difficult to actually hear the words. She said to continue with the speech and OT, and recommended some home-based intervention through the Monarch school or Cleveland Clinic Center for Autism. Because of Cameron's age and less severe diagnosis, we chose the Monarch school. They are coming out Monday to discuss their services. I have great friends who love us like family, but they can't truly understand what we are going through. We certainly know that things could be a lot worse, and we are grateful that Cameron is fuctionig at the level he is, but it is still hard to watch him try to communicate, and not be able to. It is hard to see all of my friend's kids talking and playing with toys appropriately, while Cameron still makes baby noises and would rather open and close cabinet doors than play. At his age, he can still get away with some of the abormal behaviors and speech because people still think it's "cute." But as he gets older, it becomes more apparent that he is differnt than other kids. My husband and I find ourselves feeling the need to "explain" what he has, so that other people understand, and not just think, "what is wrong with that kid?" When people know, they seem much more understanding and accepting of him. We aren't sure that is the best way to handle this, but it's our way and it seems to work for us. How did you all handle it when your child was first diagnosed? Did you tell people, to help "explain" the behaviors your kids were displaying, or did you wait for people to ask, or did you just not say anything?Other than speech and OT, we are involved in Kindermusik and My Gym, and have lots of play dates with our friends. Some days we are so busy, I don't even have time to think about what we are going through. Some days are bad, and it's all I can think about. So I hope this group is a way to share those hard days, as well as the triumphs we will have along the way.Thanks for reading this, and I hope to get to know you all soon!Laurie Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi Laurie, Reading your story brought back many memories, not very happy ones. However, through the years (and many miracle breakthroughs) it has all turned out for the good. I firmly believe in the power of true prayer. Ask for guidance each and every morning and night. Trust that guidance and move forward. You know your child and you know what is right. When we found out our daughter was on the spectrum (also at 18 months) we prayed and some really wonderful people came into our lives. She has been under Monarch Early Intervention home program since she was two; is with Middleburg Early Education in Middleburg Heights; does receive OT but you will find as your child changes your OT's will change--- Cheri Wojton of Sensory Connection and Barrie Galvin; Padula for Speech and (also changes with need); Paddy O'Flynn for Cranial Sacral therapy and Dr. Taxman for GI problems. Amazing, amazing professionals within our community. She is also on the GF/CF diet. Dr. Taxman has also had her on supplements since she was 18 months-- fish oil, probiotics, and a supplement. She is truly a different child. She is amazing. Speech has come, play has come and she is closing the gap on her development (peds put her at 6 months behind). This is not about me but I don't want to worry about the future because you are moving and doing what is right. Sounds like you are on the right track! Keep praying, move forward and don't look back. Don't question. Don't compare. Just keep moving forward and have faith. Try not to spend too much time at the computer (ah-- sometimes until 3:00 am crying, etc from the author) it can also hurt you. In this community you are going to meet some amazing, and not so amazing, people who you will be truly blessed to know. Please post during those sad times-- it is good to know your not alone :-) > Laurie <laurie4098@...> wrote: > Hi Everyone, > > My name is Laurie, and my husband and I live in Twinsburg with our > 19 month old son, Cameron. I am a pediatric nurse, and have been a > stay at home mom since Cameron was born. My husband is an > optometrist. Cameron was born healthy, and met his milestones as he > should have until about 10-11 months old, when I felt he was lacking > in some of his social communication; no pointing, not always > responding to his name, not playing peek-a-boo, and not waving or > clapping. Our pediatrican told us to keep on eye on him, since > testing couldn't be done until around 18 months old. At 17 months > old, I couldn't wait anymore. We went to a developmental > pediatrician who basically asked us a bunch of questions and told us > Cameron needed speech and OT. She did no testing with him. So, we > found another developmental pediatrician who met with us for an > hour, and scheduled two 1-hour testing sessions with Cameron. We've > had 1 testing session so far, and go back this week for the 2nd. She > already told us that based on her findings so far, that Cameron > falls in the PDD-NOS category for diagnosis. This was not a surprise > to us, but still difficult to actually hear the words. She said to > continue with the speech and OT, and recommended some home-based > intervention through the Monarch school or Cleveland Clinic Center > for Autism. Because of Cameron's age and less severe diagnosis, we > chose the Monarch school. They are coming out Monday to discuss > their services. > > I have great friends who love us like family, but they can't truly > understand what we are going through. We certainly know that things > could be a lot worse, and we are grateful that Cameron is fuctionig > at the level he is, but it is still hard to watch him try to > communicate, and not be able to. It is hard to see all of my > friend's kids talking and playing with toys appropriately, while > Cameron still makes baby noises and would rather open and close > cabinet doors than play. At his age, he can still get away with > some of the abormal behaviors and speech because people still think > it's " cute. " But as he gets older, it becomes more apparent that he > is differnt than other kids. My husband and I find ourselves > feeling the need to " explain " what he has, so that other people > understand, and not just think, " what is wrong with that kid? " When > people know, they seem much more understanding and accepting of him. > We aren't sure that is the best way to handle this, but it's our way > and it seems to work for us. How did you all handle it when your > child was first diagnosed? Did you tell people, to help " explain " > the behaviors your kids were displaying, or did you wait for people > to ask, or did you just not say anything? > > Other than speech and OT, we are involved in Kindermusik and My Gym, > and have lots of play dates with our friends. Some days we are so > busy, I don't even have time to think about what we are going > through. Some days are bad, and it's all I can think about. So I > hope this group is a way to share those hard days, as well as the > triumphs we will have along the way. > > Thanks for reading this, and I hope to get to know you all soon! > > Laurie > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Chris... I don't find it takes alot of energy or strength or even time to say something to someone... my automated (or so it feels like somedays) is more or less... " I'm sorry that my son's behavior seems to have disturbed you (or gotten your attention).. he isn't a bad child (or whatever term they used), you see he has Autism and for him it's hard to sit still or to handle this type of environment (or whatever the situation may be).. but he'll never learn to adapt to it and behave properly if we keep him locked in the house " Generally I get an apology, some even tell me they wondered because they know someone or are related to someone that has Autism. and often people have asked me for more information... now I am by no means the authority on Autism but I have learned that most people have the same preconcieved notions that I did prior to having my son since he was our first ever exposure to it... all autistic people are like rainman! right? wrong! we know that.. but to someone who has never met anyone or have been exposed to others with Autism.. they wouldn't know otherwise. So do I think it's sharing something to personal and that I should just keep it to myself and usher my child to the car? Nope.. because one day Kiernan is going to understand their comments.. and maybe by then.. by hearing my responses... he'll be able to respond the same, instead of being in tears or having hurt feelings like I have been so many times! I guess growing up someone who was teased and picked on for being different.. has given me that hard shell... I was and still am the fat girl... or as i prefer it.. I am a woman of substance! LOL I was raised by a family that taught me, if you have nothing nice to say, then don't say anything at all.. but growing up around people who either didn't learn that or didn't think that was something they had to do.. I heard comments throughout my entire life.. why don't you diet? oh you have such a pretty face, if you wouuld only lose weight.. or my favorite while out at restaurant " should you really be eating that " .. I guess what I'm saying is that growing up and not being able to stand up for myself or defend myself.. I feel it is my job to do that for my child.. since cognatively at this point.. he is unable to do it himself.. So anywho... those are my feelings on the topic... we are all going thru similar things.. but how we approach them is going to be as different as all of our kids are... We just strive to do what we feel is best for our children... and that's what matters! Stay Healthy! " It is only the small minded who fear that which is different, it is the ignorant that hate that which they fear. " M. 1994 > >... I guess the best way I can leave it > >is.. do what you are comfortable with... don't feel you have to > >explain your child's behavior.. but don't feel guilty if you do.. > >there is nothing wrong with letting someone else know that your child > >is different.. if anything it may make them think before opening > >their mouths in the future as well as educating them a bit about > >Autism.. > > - You're right. There is nothing wrong with educating people about autism and the behaviors that go along with autism. I guess I just don't have the energy to educate strangers! It's hard enough dealing with the biases of co-workers and misperceptions of friends and family! You're a stronger woman than I!! :-). > > What have you found helps the most when dealing with other's prejudice? Chris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Hello, Dr. Taxman is a GI doctor. He is located in Beechwood. He is not a DAN doctor. He is, for lack of a better term, a " mainstream " doctor. He is just wise enough to look at the studies and make a connection. He is wonderful. I did notice a change after we started the diet. Don't be afraid of it, it is really quite easy. Meat, veggies, potatoes, etc. Rice milk instead of regular milk, margarine instead of butter and Whole Foods has a great selection of GF/CF products. Galaxy Nutrion makes a great CASEIN FREE (that is what the label must say-- and it does) cheese. I use it in Mac and Cheese and scrambled eggs. Melts the same and, more importantly, looks the same. As far as supplements, absolutely. Dr. Taxman carries a line called Metagenics. It is a great line. He even has a nutrional supplement (I mix with a mashed banana) that will support your child's nutrional needs will on the GF/CF diet. He is wonderful! Fish Oil and Probiotics-- Absolutely! The studies are catching up to Dr. Taxman. It is far easier to start at your child's age. My daughter doesn't even realize she is on the diet. You are blessed to be moving forward at such an early age, as I was. Let's hope, and pray, that we will see more moms taking action early than later. I think my daughter would be an entirely different child had I not acted. Forget the label, treat the symptoms! Let me know if you need anything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Ooops, I started my daughter immediately with Dr. Taxman. She was about 18 months. Her problems started in the gut. She was a food intolerant baby. Didn't notice any other sign but she just refused food. Horrible, horrible experience. But behind us now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Does Dr. Taxman take insurance? I am trying to check our coverage but the system is down right now. We have spent so much money with a DAN Dr. It would be nice if we were able to use our insurance. Thanks Jacki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 I am glad you are going to see him. He is an amazing, very calming, doctor. When he did the upper GI on my daughter I was a bawling fool. He calmly spoke to me and ignored my babbling. He's great. So happy your on the right track. I also have Anthem and he does take Anthem. He does have a satellite office at Middleburg Heights on the West Side. You first need to see him in Beechwood and then in Middleburg. Let me know. I'm praying for good things! > > > He's on our plan (Kaiser/Emerald Health), and the's through Rainbow, so I imagine he's on more than a few plans. > > Laurie > > > @...: jackeee1002@...: Tue, 8 Jan 2008 20:28:13 +0000Subject: [ ] Re: New to Group- Hello! > > > > > Does Dr. Taxman take insurance? I am trying to check our coverage but the system is down right now. We have spent so much money with a DAN Dr. It would be nice if we were able to use our insurance. ThanksJacki > Quote Link to comment Share on other sites More sharing options...
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