Sunday, October 13, 2013

The Problems Many Autism Families Are Facing

Some Problems We Face 

  

I could in all honesty make this post pretty long. As with any challenge in life we face many obstacles dealing with it. Some small, others big. This is a "generalized" outline. Just as I have said before every child with autism is different and the same goes for every family unit involved. 

Insurance Problems 

 If you are one of the lucky ones who live in Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, Oregon, Pennsylvania, Rhode Island, South Carolina, Texas, Vermont, Virginia, West Virginia, and Wisconsin your insurance more than likely covers some if not most treatment options. If you live in Washington like me you are facing the fact that most insurance companies here do not and are not required to cover any percentage or treatment. And again if you are like me and have a two parent home with two small yet modest incomes you can forget getting any help from the state. To be fair we don't have it the worst. These states do not have specific insurance coverage mandates for autism spectrum disorder and either do not have a mental health parity law or that the mental health parity law does not include autism spectrum disorder as a covered mental illness:South Dakota and Wyoming.This more than likely could mean that there is actually not any option for these parents unless they can receive state benefits. It's downright scary. While I am not one who tends to accept this notion that there is an "epidemic" of autism,it should be recognized as a major enough condition to be allowed the same benefits as say bipolar disorder or major depression. We have a whole generation of children coming up who have been properly diagnosed or better yet they are getting diagnosed younger and younger so this should be enough to warrant a chance for these children(I am not ignoring the fact that there are many adults with autism who are experiencing this as well). 

Know It All Doctors 

If you again are like me you may have brought your concerns to your child's pediatrician and been brushed off. Too many general practice doctors and the like are not trained enough to recognize these signs. Maybe I'm being tough on them but I figure if you have an M.D. and can deliver a baby shouldn't you be trained to see symptoms or signs or better yet trust a mothers instinct? I still can't help but feel that when my son was 18 months old and we were sure that something was going on we should have gotten a proper referral. That would have made Colton's wait time so much shorter. That leads me to my next topic.

Waiting Lists 

Nothing is more frustrating than finally getting a referral or getting a diagnosis and seeking out treatment to be hit with huge wait list times. I've heard everything from 6 months to 2 years! When you read up on autism and the very positive and almost crucial effects that early intervention can have this is almost devastating. I'm really not sure how much I can give advice to these practices on shortening waiting periods but I do know that this is a huge obstacle to deal with! 

Your Marriage Or Single Parent Life 

 This one is pretty obvious. Statistically 80% of marriages between parents of an autistic child end in divorce. When you are dealing with a child who is like mine and requires almost constant attention this can cause your other relationships to go by the sideline. That being said I cannot even begin to imagine what the single parents out there are dealing with. I cannot imagine tackling this all on my own. These parents must be some really strong people and I have the upmost respect for them. 

Your Social Life 

I suppose this can also include extended family life. Imagine all your friends or family getting together to spend some quality time or even have playdates. This is an almost impossible thing for myself personally to enjoy. Now imagine that you have a child who refuses to let you "visit" with others or even let you sit still for two minutes. Also imagine that your child is afraid of just about everything in the surrounding and even the people present. Imagine that they are either whining,yelling,humming,or crying pretty frequently. Yeah doesn't usually make people want to invite you to things. Also doesn't make you want to try to go through the battle of even attempting to. Imagine feeling like you feel that you need to warn people about your child and how things may be. None of that sounds very fun does it? 

The "Comparison" Game

Now I do not like admitting it but I know I can't be alone in this thought but I am guilty of comparing my child to other children his age..often. It can be painful to watch other children tell their parents "I love you" or even simpler "I want that". I hate every time I hear a parent tell someone else "I wish they would be quiet for two minutes". Hey I just wish my son could ask for milk, I wish my son would ask me "Why" over and over again. They always tell us not to play this "comparison" game but I think every parent not just parents of autistic children are guilty of this. It's hard to watch my son be unable to "scoop" buckwheat with a small bowl at co-op preschool or join in on "imitation songs" during circle time while I watch every other child there do them. I try my hardest not to do this especially since I have recently begun to feel like my son has started to realize he is different and seems to feel more detached from the world. 

Lack Of Affection 

This may be true for some and not for others. For me it is pretty true which of course hurts. I remember nursing my son when he was  little and trying to catch his eyes or stroke his skin. He absolutely hated it. When he had colic I tried warm "skin to skin" baths or "baby massage",again he couldn't stand it. Many times when I ask for hugs or kisses I'm either rejected or I get his back turned when he does get close. When my son gets a "boo boo" he refuses to even let me "kiss and make it better". How does one fight their motherly intuitions? I'm pretty sure it's impossible. We all know our children love us,it's just in their own way.Not the way I was hoping but it won't stop me from trying. I can only hope that those rare moments it seems like he may be trying to show affection will become more frequent in time but either way I love him and I know he loves me. 
  

Feeling A Lack Of "Support" 

Before I begin this paragraph I would like to mention that I have been blessed to have some great people in my life who are very supportive. That being said I think those of you out there like me know that it isn't really quite as much or even the way we would like it to be. When first telling some people about our son we were met with a lot of "rationalization" or "well all kids do this or that" or the dreaded "well we all must be because that's "typical". I try to see it from these persons' points of view,most people do not want to be negative or even "realistic". The fact of the matter is that we as parents know our children best. We spend the largest amounts of time with them. I think this particular issue only really bothers me because as a parent I feel like I'm being made to feel that I don't know my own child. That I'm not experienced enough. That I am over-reacting. Obviously none of those things make me feel that great,or supported. Yes everyone is certainly entitled to their own opinion but I'm under the belief that when it comes to parenting no one knows anything more than the next because all of our children are so different,autistic or not. I also believe that sometimes opinions shouldn't be spewed out if it's a touchy subject unless of course they have been asked for. It can totally leave one feeling a lack of support. 

Another unfortunate way is to "distance" yourself away from the "problem". It kind of hurts when you tell close ones that you're going through a struggle and they don't seem to make much of an attempt to check in and see how you and your child are doing or to offer help.Or better yet to not even try and educate themselves about autism and the spectrum. Yes that may sound "self-righteous" or that I expect people to just drop their lives to help mine. I want to make it clear that yes while it would be nice for me it's really more for my son that I'm desiring it. I want my son to feel like he can take on the world because he's got this big blanket of love and support around him. People who are trying to "understand" him or just simply enough be involved with him. I mean isn't that what every parent wants? I enjoy hearing about these villages that really do come together to raise children. It's too bad we can't adopt that way of life here. I'm under the belief that we should be a world for children, to take the best care we can of the next generation aka the generation who will potentially take care of us. The generation who will raise our grandchildren,become our doctors etc. It's a lot of work to become a part of Coltons "world" but I have to tell you once you are invited in it is such a wonderful place. I enjoy learning from my son and trying to see things his way. I guess I just wish more people wanted to and perhaps in time they will.

Emotions And Exhaustion 

I figure I would save the most obvious for last. Raising children in general can be tiring and full of emotions. Being the parent of a special needs child is like taking that first notion and multiplying it by oh say one hundred times! Ah the exhaustion:there are so many great things about my son so please don't take this as "complaining" or that I take my son for granted. Again the reason behind this post is just to share some of the struggles. For me personally my day includes lots of fun with my son and joy but that being said I'm have to estimate that more than sixty percent of our day includes whining,tantruming,crying,biting/hitting/kicking and of course the moments where Colton completely "shuts down". Whew just thinking about all that makes me exhausted. Yes a lot of those are common among this age range,the frequency however, are not. It's almost like an evolved version of infant colic but now it's (for me anyway) a 30 pound boy who can now express himself "physically". 

The other part:emotions. While I kind of previously outlined some such as: devastation by lack of insurance,extreme concern over waiting lists, and the pained feeling of the lack of affection there are also some other that should be noted. 

The depression: from the first time you heard the diagnosis to the realization that your child may not be doing or even be able to ever do all of the things you were imagining. The feeling of loneliness or isolation. The hurt that you feel for your child. None of these things are easy. 

The anxiety: Will he ever get married? Will he have kids? Will they be autistic? Will he go to a normal school? Will he go to school on time or be held back? Tie his own shoelaces? Talk? Yes these are just some of the questions you may worry over and while of course there is no sense in worrying so early on, it doesn't mean that we won't do it. Heck, I'm a natural "worrywart"! 

The fear: How will we pay for this? How will other people accept our son? Will they accept him? Will they accept the autism (or even autism diagnosis)? How will they treat him or us? All parents worry about things like their children being accepted or respected. For me personally I worry about how much more this may make my son a target for bullying,abuse and feelings of major depression.

In Closing 

If you actually read this very long one,thank you! I know that this may make me out to look very negative or too opinionated but hey it is my blog right?! There are so many positive and wonderful things about having a child on the spectrum. Never fear I will make a post just for those things here soon. Now in closing I would like to leave you with a pretty good article that reverberates much of what I have written here. Enjoy and as always thank you for your support! P.s. Check the pictures at the end! :)  

Parents of children with autism: We struggle alone

 






 Her day might begin at 2 or 3 in the morning, when her 9-year-old autistic daughter, Ashlyn, wakes up next to her. And from that moment on, Jackie Polvado's life is a full-out sprint.
"Ashlyn still sleeps with me because it's the only way we can get any sleep. But I've been up day and night, like when my daughter was up for 48 hours, screaming," said Polvado of Keller.
"It's exhausting, and there's no end in sight."

For families with children with autism spectrum disorders - a range of developmental disabilities that cause social, communication and behavioral problems - each day can be emotionally overwhelming, stress-filled and isolating.

Family and friends shy away. The child's behavior can leave parents prisoners, trapped at home. If they venture out, passers-by stare, wondering why the child isn't under control.
"Sometimes, the parents think they're admitting failure when they ask for help," said Shanel Tarrant-Simone, the single mother of twin 10-year-old autistic sons. " 'I'm the parent; I should know how to deal with it.'"But no parent is equipped to do this."

And while neither of these moms could imagine hurting their children, they can begin to understand the hopelessness Saiqa Akhter may have felt when she allegedly killed her two children in Irving last month, or how overwhelmed a single mother in New York was to kill her 12-year-old autistic son and then herself.
"People on Facebook were very quick to say, 'Oh my God, how could she do this?' But I say, how did she get to that point?" said Tarrant-Simone of Frisco. "The isolation and hopelessness - I've felt them."

Still, nothing can excuse what these women did, Polvado said.
"The resources are there - there aren't enough of them, and they cost money, but there is help," she said.
But day in, day out, many families with autistic children say they struggle on alone.

"We don't have other friends coming and offering to babysit our children," said Clay Boatright of Plano, with wife Carole the parents of three daughters, including autistic 10-year-old twins. "They don't have friends inviting them over for sleepovers. What we have is people saying, 'Wow, that must be tough.' "

Years of waiting

Unfortunately, the number of ASD cases is soaring. Statistics from the U.S. Centers for Disease Control and Prevention say almost 1 percent of children have autism or another ASD. Diagnoses in Texas increased 400 percent in the past 10 years, a trend that has officials searching for ways to teach affected students - and pay for it with the state facing a budget shortfall of up to $18 billion.

Meanwhile, tens of thousands of people with developmental disabilities in Texas spend years waiting for assistance.
"We're at 300-and-something now," said Tarrant-Simone, "and we've been on the list for five years."

Boatright said it takes about eight years on average to get to the top of an assistance list, depending where you live in Texas.
Dr. Catherine Karni, an associate professor of psychiatry at the University of Texas Southwestern Medical School in Dallas and medical director of the outpatient clinic at Children's Medical Center Dallas, said some of the increase can be explained by a broader definition of the autism spectrum, which includes Asperger's syndrome, Rett syndrome and childhood disintegrative disorder.
"So you have severely autistic children and others with something that doesn't show the full symptoms of autism," Dr. Karni said. "You have more people." More awareness of autism and better diagnostic tools also increase the numbers.
"But most likely, there is an increase in prevalence. We don't know how much, or why. We believe there is a genetic component - all the research points to that, and this tends to aggregate in families," she said.

Some speculate that environmental pollution can be a contributor. Others blame childhood immunizations, though research hasn't shown any clear correlation, Dr. Karni said. Certain metals that used to be a part of vaccines have been removed, but cases of autism continue to increase.

With the causes unclear, there is no cure. "We have different treatments. We have behavioral treatments. We use medications in psychiatry that might help with specific symptoms," Dr. Karni said. "But they don't cure autism."

Early diagnosis:critical

Early diagnosis and treatment are currently the best ways to bring improvements, Dr. Karni said.
"Our clinic goes down to 12 months of age, because the earlier the diagnosis and intervention, the better the result," she said.
"It's a small window of opportunity - a child's first five years - because of the plasticity of the brain at that age," she said. "After the fifth year, the results are not as good."
But getting an early diagnosis can be difficult.
Tarrant-Simone's sons were born prematurely, but were home within 11 days and showed all the normal signs of progress except for speaking.

"At 12 months, it just wasn't coming along," she said. But when she pointed it out to their pediatrician, she was told, "They're boys; they're preemies." "You're a mom - you know something is wrong with the child," she said, "but they were doing all this other stuff - smiling, laughing, interacting with each other. So a lot of the concerns I raised were just swept under the rug."

Polvado's daughter was social, too, and developmentally advanced. She had no problems with language. "Her first word was 'cat,' " her mom said. But there were mild signs at an early age - she hated the sound of laughter, even as an infant.

"Then it was a slow progression," Polvado said. "She started obsessing on eating only certain foods. And her language was slowing down. It wasn't functional. She could say 'cat,' 'dog,' 'shoe,' but she would never say 'juice' because she was thirsty. "I knew something was wrong and asked my pediatrician about it, and he said don't worry about it. Everyone said nothing was wrong."

The American Academy of Pediatrics has worked over the last few years to educate pediatricians on ASDs, Dr. Karni said.
"Obviously, a child who doesn't talk may have other things, too, so it isn't easy to make this diagnosis," she said. "The important thing is to send the child to specialists. Pediatricians need to have their antenna up and refer these cases."But if that doesn't happen, she said, parents need to find services on their own.

'Happy and healthy'

Even if the diagnosis comes too late for early intervention, parents like Boatright believe that appropriate kinds of education can provide the life skills their children need."As kids are diagnosed and progress through the school system, we need to identify what their true skills and talents are," Boatright said. "What are their strengths? What do they like to do? How can that be enhanced and made marketable?"

The need for proper programs is a national issue that needs immediate attention, said Rita Shreffler of Nixa, Mo., executive director of the National Autism Association.
"Almost 1 percent of the kids in this country have autism," she said, "so what do we do?
"A study a few years back said the lifetime cost of care for individuals who need round-the-clock help is $3.2 million," she said. "I don't think people realize that 1 in 110 children or even more have an ASD, and they're coming of age. So it's important that we find treatment."Otherwise, this will fall to the taxpayers, at $3.2 million each."

Naturally, the future hangs most heavily on the parents of autistic kids.Will there be a cure someday? Who will care for their child when they are gone? Can the child find friendship, happiness?
"I have a motto in my life: There's no such thing as false hope," said Polvado, who with her husband, Lamarque,publishes a magazine called Connections Kids to provide a list of available services. "I hope for the best. I hope Ashlyn will recover and find her dream job, get married and have children. That's always going to be my hope. "Then, of course, there's reality. The reality is we may not achieve that. So we take it day-by-day, hour-by-hour. I'm hoping for recovery, I'm working for recovery. But if in 10 years she can function but needs assistance, I'm OK with that.
"I just want Ashlyn to be happy and healthy." 

AUTISM NUMBERS 

•Roughly 1 percent of children in the United States - 1 in 110 - have an autism spectrum disorder, with developmental disabilities running from slight to severe.
•ASDs occur in children of all racial, ethnic and socioeconomic groups, but disorders are four to five times more likely in boys than girls.
•Studies of identical twins show that if one has an ASD, the other will be affected 60 percent to 96 percent of the time. In nonidentical twins, if one has an ASD, the other is affected 0 percent to 24 percent of the time.
•Parents who have a child with an ASD have a 2 percent to 8 percent chance of having another affected child.
•A 2009 report showed that 41 percent of children with an ASD also had an Intellectual Disability - an IQ of 70 or below.
•About 40 percent of children with an ASD don't talk at all, and an additional 25 percent to 30 percent have some words at 12 to 18 months of age and then lose them. Others may speak, but not until later in childhood.
•On average, medical expenses for someone with an ASD are about five times higher than for those without an ASD.

SOURCE: U.S. Centers for Disease Control and Prevention
Resources
Many websites offer information on ASDs, from support groups and service providers to age-specific information that could help indicate whether a child has a disorder.
U.S. Centers for Disease Control: www.cdc.gov/ ncbddd/autism/index.html
Autism Society of America: www.autism-society.org/
Dallas Chapter:www.autism-society.org/dallas_chapter
Collin County Chapter: autism-ascc.org
First Signs: www.firstsigns.org