Dear Anna,
Thank you for being courageous enough to share your story. I think that Ali is extremely lucky to have such a wonderful and caring Mommy and advocate for her special needs.
You are very bright and focused and still functioning well in a situation that is clearly very challenging. Your feet are planted on the ground and your head is not in the clouds. You are educating yourself and reaching out for help. All of these things are good.
Keep your feet solidly planted on the ground and forget about the eggshell analogy. This is a marathon, not a sprint, and you are committed to the health and well being of your daughter, yourself, and your family. If your pediatrician is not treating you with respect in spite of all you have done to try and forge a good working relationship, then move on to a new doctor. Write a formal letter to your former doctor, or tell her in person, exactly why you are changing. Thank her for her time and dedication to you and Ali, and express that you hope that she would still be willing to support you in the future should there ever be a court case where her services might be needed.
As for your ex implying that you are not a good mother, that is ridiculous! But to help you feel better and to help you in the future should you need it, start a daily log regarding your daughter. Record every phone call related to her schooling, healthcare, special needs, etc. date and time it, and write down the name of whoever you spoke to. For school, make sure there is a communication book that goes back and forth between you and Ali's teachers so that they can keep you updated and you can inform them of any pertinent home information. Since you've done some ABA and RDI work at home, keep track of this too. It doesn't have to be perfect, but keeping everything in writing is very important. As has been suggested many times previously by Tzoya and others on this board, DOCUMENT! Get a big three ring binder with dividers and keep all information about Ali and her education, autism hand-outs, potty records, dietary issues, medical issues, etc. You may want to keep a binder just for documentation regarding your ex. You can build your own case proving how good of a mother you actually ARE.
Well, I hope this helps some!
Blessings!
I definitely know what you mean about losing friends once you have a child with special needs - I've had that happen! It's also hard to MAKE friends because you are so busy caring for your child. But, don't forget to TRY to make time for yourself - it's important. Well, maybe wait until things calm down a little I guess.
I'm glad you found us and look forward to reading many more of your posts!
Reposted question I put in a different thread (and did not get an answer)
I found on the DHMH a chart stating what shots (unless exempt) a child has to get by each age for school. My question is: Is this all the school can require? According to age and what school year she is going into, Ali hads had all but maybe one of these under the DHMH's requirements...yet the doctor's office told me she needs to get 3-4 vaccs TODAY when she goes.
Also, Ali is going to be attending a Catholic school...are the laws different regarding vaccs for private schools? OR is there a general guideline?
I don't know about Catholic schools in terms of their requirements, but I would imagine they are the same.
Often, doctors will try to pressure you to get other shots that you don't need. I would print out that chart and show it to the doctor. Do NOT let them make you give your daughter any shots until you do research and decide what is best.
Our former ped (who I love, btw) was suggesting we get ds the chickenpox booster and she wanted my dd to get a few others. My respectful response was that, while I respected her opinion and wanted to keep my kids healthy, that given the issues with vaccines and autism, I was not going to give my kids any other shots than those that were absolutely required by the schools. And, even those were up for consideration. She has always been good about respecting my opinions and my research that I always do. She said that she understood (as best she can) and that since she doesn't have a child with autism she cannot fully understand what we are going through and she respected my opinion - she just wanted to let us know what was out there.
Find someone like her if your ped is trying to force you to get shots that aren't required! I think it is responsible for a doc to tell you what is available and discuss the pros and cons with you. But, if they are telling you that you HAVE to get shots (especially ones that aren't required) - then that is a doc you don't want to be going to. A doctor should respect your opinions and include you in the decision-making - it's YOUR child for goodness' sake! I understand that a lot of pediatricians see parents who either forget to immunize their kids or just don't care. None of us on this board qualify - because we obviously spend a lot of time trying to figure out stuff for our kids!
I had a nurse be rude to me once when she saw my dd's shot record. She started to read me the riot act about how I was exposing my dd to all sorts of health issues as well as everyone else's kids. My dd got all of her shots on time her first year - except the MMR (at our former clinic, they do the MMR at 12 months!). I asked to delay that - which they actually put on her record! It says "Mom is denying child to get MMR" on the shot record - really! I asked to DELAY it - not DENY it. I am in the process of trying to get that off the record.
Anyway, I interrupted this nurse very calmly and said, "Please don't use that tone of voice with me. I am a very responsible parent who has a child with autism. If you had a child with autism, you would understand my concern about vaccines. I am NOT stopping her from being vaccinated - I am just spreading them out UNDER THE SUPERVISION AND CONSENT of our pediatrician. If our pediatrician doesn't have a problem with it - why should you?" She left in a huff! But boy did I feel better! I complained to the pediatrician about her and she said that she would be talked to. I told the ped that I understood she probably dealt with a lot of parents who were just being irresponsible - but, as the spouse of someone who does public health research, we are OBVIOUSLY concerned about the spread of infectious disease. But, at the same time, we are concerned about the possibility of having problems from the vaccines themselves.
Can I ask if Ali is going to be getting all the services she can at Catholic school? We were told not to send our ds to a private school because it is so much more difficult to get services there. Often, you have to pull them out and take them to the public school to get services (at least in our area). My ds is very high-functioning and I still can't see doing that. Sorry, I don't mean to offend (I'm Catholic too!) - I was just wondering. We are considering sending my dd to Catholic school - not sure what we'll do in 2 years though!
Wow Anna, you have a LOT on your plate! I do understand your decision - I just was being too nosy
If I could send my ds to Catholic school, I would. But, we have heard good things about this public school district in terms of services (which is why we moved to this particular town when my dh got a new job). There is a Catholic school here (I went to Catholic school from 3rd grade through high school, BTW) - so like I said, I may send my dd there because I think Catholic schools provide a tremendous education. But, not always for kids with special needs. Private schools CAN be good though - I know two kids who went to a Lutheran school in our previous city and they did awesome there! They were both very high-functioning though and didn't get diagnosed until 7th or 8th grade. But, the teachers always knew something was up and made accommodations and worked with the parents. You just never know!
It sounds like you know what you're doing. I would make a break from that pediatrician if you can, though. I need to find a new one too and I am dreading it. I searched LONG and hard for one before we had our ds. Here, it is hard because we don't know anyone yet and it's hard to get recommendations. I want a woman, because (sorry guys!) they tend to listen better and tend to be more respectful of parents' opinions. Not so with your current one though, it seems!
Good luck to you - keep us posted!
In Ontario Canada anyway, YOu can get your Pediatrician to sign a waiver along with yourself, stating you have a personal issue with the vaccines. They cannot keep your child from school, however if there is any outbreak of anything, they can mandate your child stays home until the outbreak has dissipatedOh, I just wanted to add that I noticed in my previous post that I didn't specify something. I didn't just delay the MMR - I had them separated and given over the period of a year. This CAN be done - but a lot of places don't want to do it. We were originally told we couldn't. So, I told me ped's nurse this, "I WANT to vaccinate my daughter. But, I do NOT want to give her all three doses of a live vaccine at once. I am aware that Merck sells them separately. If need be, I will pay for the extra costs if there are any. But I will NOT vaccinate her with the MMR - only if it can be done separately. I would really like to get her vaccinated, but I'm not willing to take the risk of putting 3 live viruses in her body at the same time." The next day she called and VOILA! We were able to obtain the separate vaccines - imagine that!Thanks again, Snoopywoman! No need to be embarrassed. I am not ashamed. I cannot stand my ex and all the crap he puts Ali and I through....but I do not mind explaining my decision. It has been a hard 4 years....weighing what is best for Ali right now with what is best for her in the future because of her father. There are certain sacrifices I have made or Ali has had to make just to prevent him from getting aggressive or trying to go back to court. One stupid judge wanted to give him unsup. visits despite admitting my ex was abused himself as a child and has done things wrong with Ali and should go to therapy....luckily my lawyer fought her and my sister was the one supervising visits then.....it has been a mess. That is why the focus on Ali's SPD/HFA related therapies has not been as great as it should be....actually they gave the SPD dx and I only started getting somewhere with helping Ali by accident when I had her in emotional therapy for the abusive behaviors my ex had shown toward Ali and they did some other tests.
Anyway, for now, I just think the school I picked is the best choice. If Ali could have a wonderful teacher like her dance teacher who is the most patient, wonderful teacher of any kind I have ever seen, and if she can get the best appropriate therapies I think she could be okay in the Catholic school. The issue also has been my ex has been in denial about Ali's issues and has put up legal fights with me about me seeking help for her....saying Ali is fine and I am neglectful and not a good mother. Anyway, a lot to go into but it has been a mess....I am always stepping on eggshells. I am to the point now where I am starting to get real mad about everyone (my ex, Ali's doc) standing in the way of me from helping my daughter and doing what will be best for her. So I am ready for Ali's ped. today. I do think I should look into getting another ped. but this one has all the history and my concerns for Ali relating to my ex and is willing to stand up in court if need be in regards to him....so that has kinda kept us going back to her. As well, Ali loves her....I guess a lot of things in our life have me always feeling torn and stuck. But, THANK YOU for your concerns and advice and response. It means a lot....actually this board is my best friend and greatest support. Thanks, everyone!
Okay, I just keep putting my foot in my mouth it seems! You obviously have other worries besides vaccines - and if that ped is willing to go to bat for you in court, well that's a whole other issue. I guess I would do my best to work with her then - at least for the time being. Custody of Ali and her safety have to come first above everything.
Wow, I'm glad you found this board - everyone can use some support, but with all you've got going on - you can use it even more!
I have printed out the DHMH requirement chart for the 2007-2008 school year as well as I have printed a list of Ali's recent behavioral issues and a milestone checklist (with a # of blank spots). I also printed the school's confirmation of the minimal requirements. I am ready. I was not sure how I felt about getting shots at all once I researched (for hours upon hours) the vaccinations and found out what they contain and some of the adverse reactions as well as a statement from a gov't official about how they think shots are safe...but they are waiting on getting certain ones for thier kids until more research is complete! I have decided to only get the bare minimum requirement for Ali to go to school. She will only need one (or maybe none...depending on whether she got one vacc. that they marked but did not sign on her vacc. book) today. I will reconsider getting an exemption for the future once I research more and Ali is in school and better therapies.
I am a 7 classes away from my B.S. in Psych (with a 3.92 GPA). I have an Education (concentrating in special ed.) Associates degree. As well, there are some mental health disorders and learning disabilities that run in my family that I have seen first hand, I have volunteered a few times at KKI and I research mental health issues and child development for fun...I know I am a nerd. However, Ali's doc. has always dismissed my concerns and acts like I have no idea what I am talking about most of the time. She has been a ped. for 20+ years. She is very sweet and caring but I guess she just thinks all parents are uneducated and decisions are best left with those with more authority and education. I don't know.
So far with Ali, all of her services have come from a grant she got through a great clinic and when that ran out, I began doing some ABA and RDI type therapies at home with her. However, obviously that has not been quite enough....though she has made great advancements and def. has improved. Right now, Ali and I live with my family (not ideal but my mom watches Ali while I work and I help them out financially what I can) well, we live 7-8 houses into the city....which is a horrible school district with horrible test scores, crime, and only 41% of special needs kids get the appropriate services. With that, my previous Catholic education (at the same school Ali will go to), the small class size and supervision of this catholic school, and issues concerning Ali's father (he is abusive only gets supervised visits and has made threats of taking her...the Catholic school has better security and procedures and is smaller making it less possible for him to be able to get out of the school with her
The decision to put Ali in Catholic school had to do with religion, the quality of education, the horrible public schools in my region, AND Ali's father and worries about him. If I lived in the county and he was not involved in her life still...I may have decided otherwise....but.............
Anyway, THANK YOU SOOO MUCH for your thoughtful reply!
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