Recently I planned on going to an Autism Support group in a nearby city with three other ladies. In the end, one of them got the flu, and the rest of us decided that we were not interested in the topic they were going to cover because it did not relate to our specific cases. They were going to basically discuss issues dealing with children with severe autism. Therefore, we decided to stay in our area and eat at Mellow Mushroom (a very yummy pizza restaurant). We were there from 4:30pm until 8:45pm and there was never a break in our conversation. We talked the entire time! This post is a recap of what was discussed and some interesting information that I did not know.
It seems that in all three of our cases our husbands and family were skeptical about anything being wrong. I think this happens a lot. Part of it is denial. The other part is ignorance. It's hard to admit that there is anything wrong with your child. With grandparents there is often a sense of guilt associated with it as well. It's as if THEIR genes were the culprit or something. It's almost ludicrous to think that people would think that, but they do. It's human nature to place blame on things like this. I just thought it was interesting to hear how each of us found out.
Case #1: The baby girl was born with a heart defect and at only 3 days old she had to have surgery. She was sent home after just one week and she recovered very well. For the next few years everything was basically ignored because it was attributed to her health. However, the mother knew that something was not right. Her daughter was very sensitive to sounds and she was not communicating like she should. She was also having issues with her gut. She decided to take her child at age 4 to get evaluated at a clinic that specialized in autism. Her daughter was diagnosed with autism and sensory integration issues. The mom finally felt validated. Although the husband is still in denial, they follow the casein/gluten-free diet and have recently learned that she is also sensitive to corn. She explained that the diet is going well and that she is on the road to recovery. She has an optimistic attitude and feels that she has had to go through this road alone since no other doctors had answers for her.
Case #2: The baby girl was born with cleft palate. She had surgery and although she had to have some speech therapy early on, she is doing great now. She has behavior issues at school and is sensitive to noise. She has not been diagnosed yet, but they suspect she is in the autism spectrum. She is waiting to see specialists at a nearby clinic that specializes in diagnosis of autism spectrum disorders. The father is on board and is supportive. He wants a label. The mother just wants to know what to do. She follows a "healthy" diet and tries to avoid processed food, dyes, and sugar. She feels the same way about the doctors not having any answers for her. Every test and treatment she has done has been initiated by her. She definitely feels frustrated.
You all know my case, so for sake of time and space I won't discuss that right now. The similarities are obvious. I thought it was definitely something beyond coincidence that brought us together. There is no doubt in my mind about that.
The diet factor was of interest to me. We tried the caseine-free diet with my daughter and she seemed to respond to it. I thought about trying out with my youngest to see if I noticed any changes, but it's such a difficult diet to follow, and I don't have any reason to do it with him anyway. My #2 did not seem to respond to it when we did it years ago and so I don't think it would be worth the trouble to try it again. In Case #1, the mom (let's call her Bethany) said that she noticed changes right away. She has done a lot of research to find recipes and supplies to feed her child. The biggest challenge is finding the right products. Labels can be so misleading. She told me that she has had to actually call the manufacturer and get information concerning ingredients to ensure that they were truly "gluten-free" or "caseine-free". She has been disappointed at some of the companies. She also told us about how intolerant a lot of parents can be when it comes to things like this. She said that she has been told she's crazy for not letting her child have cake and ice cream. I think that's so sad. It's hard enough for her to follow the diet and then to add that to her pressures... that's so unfair. You can't say they are "allergic" because in reality they aren't. However, they DO have food sensitivities and that is basically what she says. Parents who can't understand that are just ignorant. If it were THEIR child, they would not think twice about it.
One of the most frustrating things that is common among the autism community is finding the right doctor. Bethany had tried different doctors in the area until she found the same group that I found. Fortunately, for her, she found them early on. She said that at first they were skeptical about the whole "casein-free" diet, but when they saw the results NOW they actually recommend it to patients as something "to try" and use her as an example. I think my timing coming into this practice was perfect!! This REALLY made me feel better about going through what I did. I am now seeing them at a time when they are more open to alternative medicine and alternative therapy. That's so exciting to me.
Bethany went to a DAN doctor in a nearby city and told us a little about how that went. For those of you who don't know what a DAN doctor is... DAN stands for "Defeat Autism Now" and this is a good site that explains in an unbiased way what it's all about: http://autism.about.com/od/alternativetreatmens/f/dandoc.htm
They basically give parents hope. In many cases they see dramatic results and although there is not a "cure" for autism, these doctors offer treatments that other doctors refuse to try! I don't think there is ONE way to treat autism. The only thing that traditional medicine can offer parents is drugs to help relieve symptoms and to manage behavioral issues. In some cases the drugs make things worse. DAN doctors have a different mindset when it comes to treatment and they look at it as a damage that needs repair versus a genetic condition that has no treatment or cure. That is so important because early intervention is critical. If a doctor has a "wait and see" attitude then you are not going to like what you "see" later on.
With Case #2 the mother (let's call her Tina) was so frustrated in the beginning because the doctors basically told her that there was nothing wrong with her child. She coincidentally went to the same group I am going to now, and she still goes to them. In spite of the lack of aggressive action she still felt that they listened to her when she expressed concerns and in the end recommended that she get tested. They still didn't think anything was wrong, but they said, "it won't hurt to do it for your peace of mind". She is so glad she did because she was able to get her into the Early Intervention Program and there is now a paper trail that will enable her to get services for her in the future. She told us that she lucked out and got an appointment to see doctors at a place called Sparks Clinic in Birmingham, Alabama during Spring Break because someone had cancelled. I am anxious to hear how it went and what the results are. I will try and update you all when I find out.
All three of us see the same doctor. All three of us had the same experience with our previous doctors. All three of us were in the end validated after years of worry. It's so unfortunate that we all had to go through the same struggles and disappointments to reach the point where we finally have some hope. It's unreal how ignorant doctors are when it come to autism. One would think that more doctors would listen to patients and try to find out more about autism... especially when the rate of autism is increasing at such an alarming rate. If the rates keep growing like they are... before long, half of the children coming into a pediatric office will have some form of autism or neurological deficit. If you think THAT'S hard to wrap your head around... then consider these statistics:
Approximately 17 percent of children have some type of developmental disability, including more mild conditions such as speech and language disorders, learning disabilities, and ADHD, which appear to be more common than autism. (Information from : http://autism.emedtv.com/autism/autism-statistics.html)
The following is the highlights of statistics I found online:
The following data was produced by the Department of Education in the United States for numbers of children ages 6-21 served by IDEA (Individuals With Disabilities Discrimination Act) who have autism:
State.....(1992-1993)......(1999-2000)....%Increase
Alabama.......68...............670...........885
Arkansas......30...............560..........1,767
Illinois.......5..............2,435........48,600
Maryland......28..............1,551.........5,439
New Mexico....16................193.........1,106
Nevada.........5................273.........5,360
Wisconsin.....18..............1,445.........7,928
In case you can't believe your eyes..... let me explain it to you. The chart has ALL the states and I just posted SOME of them. For example, between 1992 and 1993 there were only 68 children between the ages of 6 and 21 who were served by IDEA in the state of Alabama(that doesn't include ALL cases, but just those who received services). Between 1999 and 2000 the numbers rose to 670! That is an increase of 885%!! If you look at Illinois, the increase percentage was 48,600%!! The numbers are unreal! I am trying to find some more recent data and when I do, I will make sure to post the information. I can only imagine the numbers for 2008!
I think it's important for everyone to realize that this is not an isolated problem. It's not just the parents of these kids. The way they are cutting back on education and programs, I am just holding my breath about those with disabilities. I would pray and hope that the new president would not EVER cut back on those type of things, but there is no way of knowing at this point. The most important thing we could do right now is notify our congressman/congresswoman about this important issue. We need to let our voices be heard. There are many stories left untold, but the important thing is that the facts speak for themselves. They can no longer ignore it and we need to make it harder for them to ignore the children!
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This little light of mine.....
I'm going to let it shine.
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