Story Idea-Diagnosis, Cost, Schools

This person wants to express their concern on some issues. This item was emailed to this blog--AR

Here are some issues:

Diagnosis
I am not sure how many different things I have been told my son had - He is 10 and was formally diagnosed with autism at 9.
First PDD, ADHD (still has that), Landeau Kleffner Syndrome, Sensory Integration Disorder, Slow - whats up with that.
I wonder about the mercury levels too because he also has numerous fillings in addition to being vaccinated.

Money
Who is going to pay me to stay home with my son as I can only work part time. SSI is only $623 a month - what does this pay for today??????????? Wth two people you don't even get $200 for food a month, so who will by supplements and special foods like gluten free bread etc.. which is supposed to be good for him. Let's not forget that most of these children are very smart and also deserve to go to plays and movies, bowling - none of which can be done because of the lack of $$$. Lets not forget that it takes 2 hours to get to the doctr and 2 hours to get back on public trans or the meltdowns because of flying bugs outside and the lack of personal boundaries and the stares and underthe breath comments and judgement from others.
Sorry Jenny, but I'm over it with your book, $4000 a week for special services of course your child would be getting better, but what about the normal people.????????????????????????????????? I will say that your story is as heart wrenching as mine and Sally's and Mary's and all the other moms that have had their hearts smashed into bits as you watch your child in the line at school and no one says hi to him or talks to him. n preschool I had a child walk up to me and say " I am glad you are here to get, ****, I hate him. I don't have time to write a book because I have to work part time and be home every evening with my son to do his homework. How much of the money made from this book DIRECTLY helped other children with autism. I saw nothing about proceeds or a % being donated.

Parents should do all they can to help their child but do not do any new diets without first consulting a physcian or someone with a degree in nutrition - you can't just take dairy out ofthe diet with out having a specific plan with how your child will get things like Calcium and Vitamin D and other nutrients - there is also organic milk without hormones and such. You can't replace food with pills or vitamins and it is unwise to do it without some PROPER guidence. Iguess if you have $500 or whatever to pay for all the really espensive stuf and fancy doctors - well then do it I guess.

Education
Schools are still not up to speed, because of lack of funding and educated staff. Don't lower the bar! This is the first year my son is getting a "report card" - why is that? he does the work?
Alternative schools or programs such as self contained classrooms or computer area (lack of) that keep the bar low and comfortable for the teacher that usually has no other support. As a parent I would love to volunteer at the school but that would negatively impact my child and our almost nil income.
I am constantly talking with the school and thought they are really nice - they don't have the resources.

PDD spectrum

This mom wants to share her son's possible autism. This item was emailed to this blog--AR

Ashley...please keep us posted!--AR


Hello everyone,
My name is Ashley and I live in Indiana. I have a 3-year-old son who is currently being tested for Autism. He goes to the doctor Tuesday, October 30th so we can get a referral to a child psychologist. He shows a lot of the signs for it, but we have to have a medical diagnosis to get the treatment for it. As his mother, I am sure that something is wrong and I am fairly certain that it is something on that spectrum of disorders. He does not talk the way he should, he has lost words, he shakes when he is excited, he acts like he can't hear us (and I know he can, his hearing has been extensively tested). He doesn't acknowledge anyone most of the time. He has just started to give hugs freely within the last six months. He loves to repetitively clap his hands. But he is an amazing child and he is soooooooo adventurous.
-Ashley

Our life beyond the word Autism

This person wants to share their story in dealing with autism. This item was emailed to this blog--AR

It was a little over two years ago I first heard the word Autism. My second child Gabriel was fifteen months old and we were desperate for help. He had stopped sleeping. He wasn’t talking. He had to be on top of (literally) me for almost every minute of every day. If he would get off my lap he had to be in arms reach. I had bruises up and down my arms because he had a need to pinch me (now I know it’s a stimulatory thing and he can’t control himself). We tried to take him to the grocery store and he would scream and fight. We took him to a birthday party for his great grandmother and he screamed so loudly we nearly had to leave the party. And if we tried to give him a bath… all hell broke loose. He would fight, kick, scream, and even bite us to get away. He acted like the water was burning him alive even if it was near to being ice cold. He wasn’t talking. He wasn’t interacting the way other children his age seemed to do. He couldn’t entertain himself for even two minutes at a time. We have an older child so we kinda just KNEW something was wrong but every time we mentioned a fear about him to friends or family we were told to just give him time boys develop later.

His pediatrician didn’t look at us like we were crazy. She was also concerned. We started the cycle of testing that would take over most of the next year of his life. First he had a hearing test which stated he had normal hearing. Then we saw a speech therapist that referred us for weekly appointments and to have an occupational therapist consult. And here is where the word autism came up for the first time. The occupational therapist told us in her opinion our son had serious pervasive developmental disorder problems also known as autism. She told us to go see the pediatrician. The pediatrician sent us to see a neurologist. The neurologist ordered an MRI and formal testing and evaluations to get an idea of where on the spectrum our son would fall.

It took a long time to get through all the evaluations and we answered a million and two questions about our son and his daily habits and his life. It was only a few months ago actually we were officially given the diagnosis. We had been told by every single doctor we had seen since it all to read all we could about Autism and to remember that no matter what our child was still our child.

I felt a lot of the time that maybe we were just imagining things. This was partly due to the fact everyone in our surrounding family acted like we were going overboard with doing speech and occupational therapy. They also felt we were letting our son run wild and without any parental control basically because we were too lazy to parent him. They claimed he was perfectly normally and acted like we just wanted extra attention from the doctors and such for whatever reason. We knew something was wrong. We didn’t know for sure what. We felt our job was to help our son no matter what people around us said and we still feel that.

Our son who was so perfectly normal was not included in invites his sister got to off with her aunts. He wasn’t welcome to hang out over at her house. No one could bother to ask us if we needed help. We could barely even get someone to watch him half the time to do things like our Christmas shopping. No one wanted anything to do with him. When we put our foot down about taking one child off and leaving our other one home and the fact it was causing him to attack his sister in anger and hurt her they stopped having anything to do with either of our children.

As he got more and more verbal ability from help of his speech therapist (my personal miracle worker I think) we started getting more control of his behavior. We put him on a medicine to help with his sleep and you wouldn’t believe the difference him getting six hours of solid sleep would make. The occupational therapist worked/works with him and helps us deal with the sensory issues. At times our son appears almost normal but very hyperactive. Other times he melts down and falls apart.

Recently he started the early school program for children with disabilities and he has had a lot of regressions and meltdowns. It’s almost like being back at square one sometimes. We have to take every day as it comes with him and some days we all are ready to just sit down and cry. There are many nights even now after I put all the kids to bed the first thing I have to do is sit down and just cry my eyes out because it was one of the bad days and I am beyond stressed.

Gabriel is now almost four years old. He is considered a high functioning autistic and we have a lot of hope for him in the future. I have to say some of the hardest moments we have with him have to do with public situations. People who can’t help themselves making comments about how we should control our child better or we should spank him to change how he is acting. (Think a meltdown after forty minutes in a grocery store that means he is either bouncing around the buggy semi out of control or sitting in the middle of the aisle screaming for no apparent reason… it really depends on the day)

We finally thought we had a handle on things when our third child was born during all the testing and such being done for Gabriel. We spent the entire pregnancy terrified about the possibility of another child with similar issues. We were given information about how common it was for a second child to be born with the same problems or even more severe ones. Our fears weren’t to be mentioned to family though. They didn’t want to hear that we were worried. They didn’t want to talk about how Gabriel was doing. They didn’t want to know what the doctors had to say about him.

Our pediatrician started watching Alexander from birth for anything off the mark. By six months we had huge red flags of a problem. The biggest one being he was refusing to be held to breastfeed. He couldn’t handle me holding him that closely and would scream and fight to get away. Effectively he self weaned himself in an effort to be left alone with a bottle so he wouldn’t have to be touched. By nine months old we realized he was missing almost all of his fine motor and social milestones. Now he is 15 months old and has a tentative diagnosis of severe classic autism. He doesn’t talk and is so hyper sensitive to things that his occupational therapist says there isn’t a word to describe how sensitive he is. He has many more issues than we ever saw with Gabriel. He does a lot more self stimulatory things. And we have a very long road ahead of us now to see that his needs are being met by us and his medical team.

Our life is in a word chaotic. We spend a lot of time going to and from therapists and doctors. We spend a lot of time dealing with situations that unless you have an autistic child would make no sense to you at all. Like how often do you find a need to coax a child to take a bath by using swim goggles as a bargaining chip because you know the main fear is not getting their eyes wet. We spend a lot of nights talking, rocking, singing, holding, snuggling and a million other things with a child who can’t sleep because his body just doesn’t feel tired (sometimes even on medicine). We deal with rudeness from people who should really mind their own business when they think they know everything about our children based off two minutes of watching us deal with a tantrum/meltdown. But in the end I wouldn’t trade any of my children for anything in the world. Every battle makes each success so much more meaningful.

My daughter is a huge shining star in my life. I am so proud of her for everything. She is so smart, beautiful, and sweet natured. Without her my older son would be completely lost. Most of Gabriel’s kid like behaviors he has learned by watching her and she is tireless when it comes to teaching him new skills… like coloring she spent weeks showing him over and over how to use a crayon to make a mark on paper. He looks up to his big sister and calls her his best friend. And now I see Gabriel trying in his own way to carry that same example to Alexander. On his good days he will do something so small you almost miss it … like showing Alex how to open and close the cabinet door so he can get in and out of it easier (Alexander likes to hide in them).

The way the three of them work together and help each other reminds me of the most important thing about our family. And there is no way to really put it except that I know we are truly blessed. Even though the word autism invaded our life with a vengeance we are still a family. And we will always be a family.

End The Controversy

Being a mom of an autistic boy is tuff, but not as tough as being the one diagnosed. Why are we all voluntaring ourselves to experiments with vaccines on babies. If autism is diagnosed at age three like my sons then why not wait for vaccines. It would sure end this huge controversy over vaccines. The government cant control us that much. We need to come together and try this for our babies. The reason being its not just the Mercury, and excluding that isnt going to end this. Its everything that makes up the vaccines including toxins. If a babys immune system isnt fully developed how are we letting the CDC inject them with 36 vaccines? What would the harm be by waitng until the age of 4 or 5. Im afraid the only harm would be to the CDC. We need to stand up for our babies.

Story Idea-Diagnosis

This posting was submitted from a mother who wants neuroimaging more in the spotlight for diagnosis. This item was emailed to this blog--AR

I would like to see the importance of neuroimaging become recognized as an important diagnostic tool. My son, now 13, was dx’ed with autism at 2 ½ and Chiari Malformation (herniated cerebellar tonsils) at 5 ½. The Chiari was found from an MRI after I expressed great concern over his frightening head growth rate from about 4 mo to about a year old. I have since found that Chiari is a fairly prevalent occurrence in autistic kids, and many more may have it, but no one knows because they have never had an MRI. MRI is the only sure way to find Chiari.

Thank you for your important and valuable work!

Liz Welker

Story Idea-Aspergers

This posting was submitted from a parent who wanted express the need for adults support groups and diagnosis. This item was emailed to this blog---AR

I am sure that EVERY parent that response to this would say that schools need to be aware of this and help our kids the right way with US included not pushed away or treated unfairly. We have the most problems when it comes to schools but also the SSI system. Almost every community has NO where to turn too for help or support. We as parents and our children need a place to go, have fun, socialize with our ill kids, and be accepted. We need help with funding and information in opening up a place like this. The higher functioning kids needs a place to also go to learn social skills.

Another big problem is it takes years for the right diagnoses. Where I live, we do not have very good doctors nor are there any kind of tests that are offered around here, they just diagnose these kids by way of questions on paper/form. Not only does the school not help but when you write to the state, they do not offer any help or concern if you even get a response back. These kids need and deserve a chance in life. Some of our most famous, richist, and smartest people have Aspergers, like Eisnstein, Lincoln, and recently, Bill Gates??? As the years has passed, it has gotten harder to go through life, let alone become someone that people look up too. I hope that in your efforts, things change on this spectrum for the better.
Good luck to you and all of us going through this.
Chrissy