Special Needs Children

Abogado del Diablo

Abogado del Diablo

Ferally Decent
Messages
745
Reaction score
2
Points
0
Location
Texas
Is anyone a parent or guardian to a special needs child. Our beautiful little boy is autistic. I'm interested in hearing others' experiences in dealing with how children with disabilities are treated.
 
Dear AdD,

Neither of my daughters has autism but I am interested in learning more about it. Where I live there is virtually an epidemic of autism/Asperger's Syndrome and as far as I can tell there is little or nothing known about the causes.

Both of my daughters were adopted from China, they are now 2 and and almost 5 years old. Our older daughter has faced some challenges related to starting life being abandoned and in an orphanage for the first several months of her life, but together we are all learning and growing together to face these issues.

added: One of my friend's daughter has autism and she is absolutely irate at the school system which first pushed her into special needs support and now at kindergarten age they are more or less saying, good luck with all that. I hope your are finding better support for you son and family.

lunamoth
 
lunamoth said:
Dear AdD,

Neither of my daughters has autism but I am interested in learning more about it. Where I live there is virtually an epidemic of autism/Asperger's Syndrome and as far as I can tell there is little or nothing known about the causes.
Click to expand...
Reported cases are definitely on the rise. It's frustrating because so little is known about what causes it. It's also hard to tell whether the increase in reported cases is due to a wider range of recognition of "Autistic Spectrum Disorders" (or "ASD") or if there actually is something that has changed that is causing an increased occurence. Most Asperger's cases probably went undiagnosed, for example, because Asperger's often just appears to make a person "quirky."

luna said:
Both of my daughters were adopted from China, they are now 2 and and almost 5 years old. Our older daughter has faced some challenges related to starting life being abandoned and in an orphanage for the first several months of her life, but together we are all learning and growing together to face these issues.
Click to expand...
That must be a tremendous challenge and an amazing blessing for you and your children.

luna said:
added: One of my friend's daughter has autism and she is absolutely irate at the school system which first pushed her into special needs support and now at kindergarten age they are more or less saying, good luck with all that. I hope your are finding better support for you son and family.

lunamoth
Click to expand...
There is a pretty good private support system, but it's extremely expensive. Our son is too young to be in the "system" yet. But from what I'm hearing from other parents of autistic children, it can be a real nightmare dealing with government agencies, insurance companies and schools who just don't understand.
 
Abogado del Diablo said:
Reported cases are definitely on the rise. It's frustrating because so little is known about what causes it. It's also hard to tell whether the increase in reported cases is due to a wider range of recognition of "Autistic Spectrum Disorders" (or "ASD") or if there actually is something that has changed that is causing an increased occurence. Most Asperger's cases probably went undiagnosed, for example, because Asperger's often just appears to make a person "quirky."
Click to expand...

I've wondered about whether it is more a matter of increased recognition, but it does seem to me that really are more cases of autism than say when I was a kid. I've heard that in MO has one of the fasting rising case rates in the country and several children in my daughter's preschool are autistic. The upswing is that there is a high degree of awareness among teachers and other parents about autism


That must be a tremendous challenge and an amazing blessing for you and your children.
Click to expand...

I think all parenting is a challenge :) . We are blessed and the girls are our joy. Thank you.


There is a pretty good private support system, but it's extremely expensive. Our son is too young to be in the "system" yet. But from what I'm hearing from other parents of autistic children, it can be a real nightmare dealing with government agencies, insurance companies and schools who just don't understand.
Click to expand...

Well, at least one thing you are well-equipped for: advocate, advocate, advocate. :)

Peace and blessings to you and your family,
lunamoth
 
i use to work in a facility for the physically and mentally challenged several years ago and one of my favorite residents there was this beautiful child who suffered with autism. Abogado del Diablo, may God bless you and your family and grant you patience and strength to endure your hardships. we are indeed all tested with struggles.

my daughter has mild cerebal palsy and a seizure disorder. when she was much younger she was hospitalized with a kidney disorder that gave me a real scare. i also hate the fact that my child may have to take anti-seizure meds for life. this really scares me. she is learning disabled so of course school has always been a real struggle and it sure is difficult finding teachers who understand. its very important to keep constant communication going between the parents of a disabled child and anyone else who will be providing care or educating them. it seems that many parents feel as though the educational system doesnt do enough for these special children.
 
Abogado del Diablo said:
Is anyone a parent or guardian to a special needs child. Our beautiful little boy is autistic. I'm interested in hearing others' experiences in dealing with how children with disabilities are treated.
Click to expand...
Hello.

I'm sorry to hear about this diagnosis. It's a difficult disorder to be sure. I hope you and your family are coping as best as possible. *hugs*

My 3-year-old son has physical deficits. He is almost blind in one eye, deaf in one ear, and was born with a cleft palate. His speech is delayed and his balance is terrible. He has constant ear infections. It doesn't rank with autism in terms of how we need to cope, but some would say that he has special needs.

People react all kinds of ways to my son. From really great to highly annoying. The trick we've learned is to treat him like we want him to be treated. He is with us most of the time so it is our example that he will follow. We don't hold him back and are not overprotective. We treat him like we would any other kid. We talk openly about his issues because in my mind at least he is who he is. I don't think him having special needs is shameful or something to be discussed in hushed tones. It is what it is, you know?

Do you want to say a little more about your situation?

Metta,
J

p.s. The educational system doesn't do enough for special needs kids. It's a crime. I hate it. But it isn't for lack of trying. As I said, my hubby works for a nonprofit that provides services for special needs children in a very poor urban area. They do the best they can with what they have. Hopefully you will find someone who is affordable and good!
 
Zenda71 said:
I'm sorry to hear about this diagnosis. It's a difficult disorder to be sure. I hope you and your family are coping as best as possible. *hugs*
Click to expand...
Thanks. It is difficult. I can feel his frustration sometimes. He wants to communicate but can't. He's about 2 1/2 now and was diagnosed about a year ago. We suspected something before that though. He was developing fine until about age one when suddenly all of his pre-verbal behaviors (cooing and pre-language gibberish) just stopped. He stopped responding to his name, and stopped making lasting eye contact. He started drifing off into his own world, oblivious to what is going on around him.

We had an EEG performed that showed some minor signs of seizures, so to err on the safe side, he has been on seizure medications for about 6 months (Trileptol). Our developmental pediatrician was pretty sure that it was mild to moderate autism. For a while the pediatric neurologist thought it was dyspraxia and seizures. It looks like the developmental ped. was right.

Aidan has been in speech therapy twice a week, occupational therapy once a week and behavioral therapy twice a week (most of this is in our home, so it's not as rough as it sounds). He's made good progress. He does some signing and his eye contact and reflection are greatly improved. He still does not mimic any verbal communication. It's very frustrating because one of the great joys with our daughter was hearing her learn about her world and communicate it to us.

Of course, his sister talks enough for the both of them. :)
 
I'm sorry to be the naive person but what is Autistic Spectrum Disorder?
 
Geist said:
I'm sorry to be the naive person but what is Autistic Spectrum Disorder?
Click to expand...
It's not naive. Most people don't know much about it.

Here's a fairly straigtforward introduction:

http://eiiswest.nsnet.org/asd.html


Autistic Spectrum Disorder is a complex biological disorder of development that lasts throughout a person's life. Autism affects the way people understand what they see, hear and otherwise sense. People with autism have difficulty with social interaction and communication, so they may not be able to have a conversation with you, or they may not be able to look you in the eye. They sometimes have behaviours that they feel they have to do or behaviours that they do over and over.

One person with autism may have different symptoms, show different behaviours and come from different environments than other people with autism. Because of these differences we now think of autism as a "spectrum" disorder. The spectrum refers to a group of disorders that share a range of similar features. As more research into autism is done, we gain a better understanding of the "autistic spectrum" that includes autism and other autism-like disorders. Often, when we talk about autism we are actually referring to the autistic spectrum . . .

Every child is different. Each of the disorders that make up the autistic spectrum share a range of related characteristics. These characteristics fall into three general areas of impairment and include:
  • 1. Impairments in social interaction - how your child relates with you or other people in his or her environment.
    • For example: A child with ASD may not seek out or enjoy the company of others.

    2. Impairments in communication - your child's ability to share information and to let other people know what he or she wants or needs.
    • For example: A child with ASD may not point to what he/she wants. If they can speak, they may not be able to start a conversation or keep a conversation going.

    3. Restricted and repetitive patterns of behaviour, interests, and activities- The way your child acts or responds to the world around him.
    • For example: A child with ASD may need to follow a very specific routine. If this routine is interrupted or changed the child may become very upset.
The degree to which a child has difficulty in any of these three areas will vary depending on how severe the Autistic Spectrum Disorder is. At the severe end of the spectrum you may see a child who cannot speak, who does not interact or communicate with others, and has many unusual behaviours. At the milder end of the spectrum you may see a child who is exceptional in his ability to speak, who tries to interact with others and has some behaviours and habits that seem a little unusual.
Click to expand...
 
It's not a very accurate picture of what it's really like, but if you've seen the movie "Rain Main," with Dustin Hoffman, it's along those lines.
 
sounds harsh. I'm sorry to hear your son has it.

I dunno how you cope with it, I don't think i could but since i have no paternal or maturnal feelings its not surprising.

Is there any way to make it go away?
 
Geist said:
sounds harsh. I'm sorry to hear your son has it.

I dunno how you cope with it, I don't think i could but since i have no paternal or maturnal feelings its not surprising.

Is there any way to make it go away?
Click to expand...
It's rough. It's funny how I always thought I had no paternal instincts too. They really kicked in after our daughter was born. I was amazed how much was "hard coded" in. :) But even more amazed how much there was to learn.:eek:

It is difficult right now because his progress is so slow. But he's a great little kid. We are working on trying different things. It could be a really long process though.
 
Abogado,

have you looked into the dietery research that relates to autism? My cousin has had a radical change in diet although he is not autistic, but the research has been done primarily with autistic children.
 
dauer said:
Abogado,

have you looked into the dietery research that relates to autism? My cousin has had a radical change in diet although he is not autistic, but the research has been done primarily with autistic children.
Click to expand...
Yeah.
My wife and I are vegetarians and diet is kind of a big deal to us.

We put Aidan on a wheat free and casein-free (milk protein) diet for about six months with no discernable results. We've since put the wheat back in his diet with no discernable changes.

Do you know of other dietary issues?
 
There was a doctor I went to who did advanced dietery testing for me. He was mainly working with autistic children. The testing was all very simple. He was able to tell me what specific foods I would have a sensitivity to and the level of sensitivity for each type of food was rated. This was different from allergy testing which I've also had, and the results also varied. The sensitivities if I remember correctly could result in behavioral issues and also bodily reactions like skin problems or hay fever, but this varied from person to person. I forget exactly how each sensitivity was rated, that is what was actually being tested, but it allowed for the doctor to create an individual diet plan for each patient.

A week ago I would have been able to tell you who the doctor was, his organization, the name of the lab, and a little bit more about the testing but I was cleaning and I think that's one of the things I got rid of. I never implemented the plan but I had heard good things about it. I know there may have been a connection to leaky gut. Wheat and casein were checked I remember, but also other things that don't qualify as either.
 
dauer said:
I found something on it from a different source. You may already be familiar with this.


http://www.autismtoday.com/articles/Medical_Testing-for-Autism.htm
Click to expand...
Thanks. We didn't do an allergy testing, although some of this research is probably behind the materials we read suggesting elimination of gluten and dairy from the diet. I'm somewhat optimistic about "chelation" and new research from the University of Arizona linking ASD to mercury efflux.
 
That your son seems to be at the milder end of the spectrum sounds encouraging. My friend's daughter is at the mild end too and they think she should be able to be in a regular first grade class, although better if it has a smaller class size so that means private school and someone at her side a lot. Actually, she (the daughter) is exceptionally bright. I wonder how many geniuses throughout history might actually have had mild autism. Not trying to make it all sunshine--I know how difficult it is for parents of autistic kids. Actually they have tried what sounds like some pretty radical counseling for the whole family to help them get more balance. It's a roller coaster ride. They have also looked into the chelation therapy and diet (encouraged by diet changes but I don't know exactly what they've done). As for my family we are doing much better this year than last. When we first investigated attachment disorders I was scared out of my wits.

As an aside, my friend told me there's sort of a joke among autism parents: so, who is the computer programmer in your family? (have you heard that anecdote?).

peace,
lunamoth
 
You must log in or register to reply here.
Back
Top