Book Review: "Making Peace With Autism" By Susan Senator

"Making Peace With Autism" By Susan Senator 

As promised I am giving my review on this amazing book. It's safe to say that I believe every home with an autistic child should own one of these. Many of you out there like me have probably browsed or read many books related to autism but this one really stands out for me personally. I highly recommend it to those who have just began their journey but it's also a great read for anyone with a child on the spectrum and even friends,family members, and those who work with children on it. It's more like a memoir than a book filled with lots of information but I found many helpful tips and comforting relatable stories in it. Susan tells her stories in a frank,loving and sometimes funny way. Her journey is inspiring. Her use of "social story" type tools for her child are helpful and informative. Her tips and stories of making her marriage work are wonderful. Her stories of troubles with the school district are eye-opening. Honestly there isn't one bad thing I can say about this book. I can only encourage you to pick it up and start reading. She also has one called "The Autism Mom's Survival Guide" which I have just started,I will review that one as well when I am done. Again thanks for reading and for you support. 

http://susansenator.com/blog/ 

Some Coping Techniques And Some Tricks I've Found

Alleviating Issues 

 A few posts back I discussed the plethora of problems and emotions we as parents of autistic children are or may be facing. For tonight's post I would like to dissect these issues and share some things that have helped me and may possible help you. I think I will start with the "toughest", the emotional aspects. 

Exhaustion And Emotions 

I'll start with the anxiety: While there is no "cure-all" there are certainly a few ways to help you deal. Some of this may sound cheesy but a lot of it is pretty basic. It does help if you can get by yourself for a few minutes (even if it means taking a "time out" from your child,I find the bathroom can sometimes be the best place for me) and take lots of deep,timed,and relaxed breaths. Also I find that being able to vent to someone or something (such as this blog) can help tremendously. I like to call it "emotional vomiting". If you keep it all going around and around in your head all you will find is more anxiety,negativity and depression. I have some major issues in this department. I'm so naturally prone to anxiety. 

Fear: This is another one that is tough to deal with. Especially in the beginning (and I'm still in the beginning!). There are so many questions,so many "what ifs". Honestly the best advice I can give you is if it is a "reasonable fear" then I encourage you to seek out the answer,whether it be by your own research or by talking to a doctor,therapist etc. If they are more "unreasonable" then why not try to just shoot for what I call "short-term goals". If you are so obsessed with getting your child potty-trained and it's more feasible that your child learns to express "yes" and "no" then refocus your attention to the maybe easier and more important goal. I have discovered that this is pretty crucial. I could spend all day obsessing over what my son may or may not be able to achieve/do someday but I know that my focus needs to be on the present. Would it really change how you feel about your child? Probably not so do them and yourself a favor and focus on them and their current work towards certain goals. 

Exhaustion: This one is an emotion that I am sure we are all feeling,by being a parent in general not just a parent of a special needs child. Kids will wear you out. Having all the extra stress,anxiety etc. can just wear you out. I wish I had a "magic cure" for this but sadly I do not. My best advice is to ask for help. Maybe from a spouse,friend or family member. Sometimes we need a nap,we need a coffee trip,a bubble bath in a quiet house,a chance to read a book,to write,to catch up with friends. I guess this paragraph also can touch on the "social life" issue. While being able to have these resources or opportunities(I can't often!),surely you can at least try. I wish I had more to offer on this one since it seems to be a problem I face constantly and I'm sure a lot of you are as well. 

Feeling a lack of support: This one sounds easy but it can be tough. Ask for help,ask for them to educate themselves and keep trying. Chances are they won't work extremely hard to reach out to you so you have to just suck it up and either decided to cut some people out of your life or to fight to keep them in. Having a child with Autism may mean that some people could possibly drop out of your life or you may have to ditch them. Your child and his/her needs are a priority as it should be for any parent. Being a parent of a special needs child requires even more work and attention. If they don't understand and don't try to then they just aren't worth the worry. If they are someone you really want to keep in your life then as I said above: Try,Try,Educate. There's nothing wrong with that. 

Lack Of Affection,Marriage And "Comparison Game" 

Lack of affection:What works for me of course may not work for you but I have come to find that there are other ways to obtain the feeling of love and affection being reciprocated from my son. The main one is squeezing. It's no secret,lots of autistic children love the feeling of being squeezed whether it be by a tight hug or a gentle squeeze of the arm. In fact I decided to try this method based on other stories from parents of autistic children for whom it worked for. I was very pleased with the result. Colton loves being squeezed,I find that if I give him a really tight hug he will reciprocate and will also often ask for "Mo" (his way of saying "more"). I love it! I have also heard about "brushing" I am not educated or experienced enough to give my own opinion but I hear it works great even as a therapeutic tool. 

Marriage: Again it is a proven statistic that 80% of marriages that between parents of special needs children end in divorce.This is very alarming and discouraging.However I think there are a few good options out there. I haven't had to go as far as marriage counseling but I do hear it works well for couples who have reached a breaking point and who are at odds over how to raise their child or about the diagnosis itself. I personally think think that the best tool to use is to spend time together. This may not be easy to attain (my husband and I work opposite shifts and don't really have anyone to watch our son) but it can happen.You have to make it happen. Even if it means trying to have frequent phone calls,text messages or late night talks in bed. You can find at least a few minutes a day to connect. When I say "connect" I mean by taking time for each other that doesn't involve "autism talk",errand running or arguing. This can be tough to do since you have to make you child the center of everything,the main priority.I like to bring my husband dinners at his work or send him goofy text messages or remind him of inside jokes.These little things make a difference,it's how we still stay "us". 

"Comparison Game":This one simply can be overcome (at least for the moment) by instead of choosing to see what your child cannot do to chose to see what he/she can do,what they excel at. Every child has something they are good at.Many autistic children often are advanced in many areas their peers are not yet. For instance Colton can pick out all letter in the alphabet correctly,or the fact that he knows most all of his colors and can sort objects into groups by their color.I find these things amazing and wonderful and when I often find myself talking to other people about their child's development or they are asking about mine I choose to push aside the anger or depressed feelings and brag. Every parent brags about there child why can't we?! 

"Know It All" Doctors,Waiting Lists And Insurance Problems 

"Know It All" Doctors: This one can be conquered simply. Change doctors or insist that they listen to your appeals and intuition. I've come to find that if I educate myself before an appointment I get my point or goal across much more easily. If I know what doctor,therapist,neurologist and/or treatment plan I want I tell them flat out that I want a referral and this is who/where/what I want it to go to. Simple as that,if they don't listen then again just find a new doctor.Trust me you will go through many different people on this journey anyway. 

Waiting Lists: This one is not as easy.My best advice is to keep calling.Sometimes,albeit rarely they do have cancellations.While you may have to act quickly and re-order your schedule,do it. You may not have that opportunity again or even in the near future. How I ended up getting Colton into his initial evaluation at Children's Autism Center was by calling a number of times and at last I called and heard there was a cancellation. For the most part just make sure they are aware of you and your child.Have other facilities keep them up to date by faxing,mailing or e-mailing them reports or notes. It isn't easy but keep trying,it's for your child! 

Insurance Problems: This one is the toughest of all. Sometimes you may find a way to get help many other times you may not. As I have mentioned before our insurance does not cover anything "autism related" and we do not qualify for any state grants or programs. There are a few routes you can try: create a "GoFund Me" account or make a "benevolent" account at your local bank,share this information with friends,co-workers,and family. You may be surprised to find some people may offer help although don't expect too much,times are rough on everyone right now and that's also not the most important support you can receive from them. Try for hospital financial aid. We recently received approval from Children's hospital although this means it is only limited to anything we receive there it's at least something. Try to make extra money:you could take surveys on the internet,it won't net "fast money" but sometimes you can receive products to test and get paid for,we just recently finished a sippy cup one and will receive $75 dollars for it. You can also find "odd jobs" or do a garage sale.Anything helps and anything is worth trying. 

In Closing 

I hope some of the tips I have offered help some of you out there. This is a life-long journey and it will be full or "trial and error" but it's all worth it. The best thing we can do is keep our eyes on the goals,the achievements and the blessings. Currently I am reading a really good book called "Making Peace With Autism" by Susan Senator,I will review this when I am finished but I do recommend picking it up especially if you are at the beginning of your journey. I also would like to ask you who are reading and in a similar situation as me to share your thoughts,tips,and coping skills. The best resource we have is each other. Thanks as always for reading and for your support. I leave you with Coltons newest achievement,enjoy! :) 

https://www.facebook.com/photo.php?v=683514538327938&l=4606357448247940537 

 

Sharing An Excellent Short Video

A Very Excellent Video Clip 

 

I just wanted to share this with all of you. I think it demonstrates how effective ABA therapy and early intervention can be. I can't wait to get Colton started on ABA! Also be sure to click "Follow" off to the side of this blog to keep up to date with us! Thanks again for your support! 

http://youtu.be/bG0vko7GHDQ

Looking At The Positive

The Joys Of Autism 

Last night I focused on the difficulties many people face at raising a child on the spectrum. Tonight I would like to focus on the wonderful and amazing things that autism can bring. That my son brings to my life. 

He Is Rarely Boring 

Colton always seems to have something great and deep going on inside of his head. I love watching the "wheels spin", the way his eyes light up when he seems deep in thought. Colton is always doing something. Whether it's running around,yelling loudly,jumping,hand-flapping,dancing,even just shaking his foot repetitively. This boy is a mover and a shaker. He's fascinating to watch and it brings so much joy to me when I see him learning,creating,moving. 

The Boy Has Rhythm 

 No lie,Colton can move. He has amazing rhythm for a two year old,even for just a boy in general. I've watched him jump,clap and dance right on beat many many times. Along with his gift of rhythm he also seems to have quite an ear for music. I've discovered that he has the ability to hear "inside" of a song. There are beats and sound effects a somewhat semi neurotypical person as myself would easily miss but not my son. 

  An Amazing Memory 

Colton has an incredible memory. Take for instance when we take him to the doctor. As soon as we get within a foot or two of the parking lot he loses it. Of course that one can be tough but I also enjoy switching things around in the house,tiny miniscule things and watching him immediately get up in the morning and put everything back in order. You teach something to Colton one time like which letter is the letter A or which number is the number 2 and I guarantee you he will never forget. Colton may be basically non-verbal but at 2 years old he knew all of his colors,numbers 1 through 20 and every letter of the alphabet. It's pretty incredible. Of course I have no idea if he is a "genius" or not but to me that seems awfully good for a 2 year old on the spectrum or not. 

Intense Ability To Focus Deeply 

Colton looks over things such as toys,books,games,puzzles etc. with such intensity it's amazing. I can't focus on anything like that. He even looks over all of the boxes of food or drink packages we hand him as if he is checking the ingredients or nutritional values. I swear if Colton just had bigger hands and better fine motor skills I could hand him a lego set instruction booklet and he could create the model all by himself. Yeah I am being serious. When I watch him play a game on the ipad he gets higher scores than I am even able to! 

"Pattern Savant" 

You should see the unique ways Colton creates a design or pattern. In fact I do have just one example I have photographs of I will share them here in this post. Colton creates these "lines" and models of intrigue.If he lines up trains they always have a certain order,grouping and color co-ordination.It's pretty unique and he always has to have things "just so". I won't be surprised if he becomes a mechanic or engineer of some sort. Here's an example:the first picture is how I have these items set on my dresser everyday and the next are of what Colton does with them.It may not seem like much to you but he does this every day. Sure it may be a "ritual" of his but I know that it is a "pattern"(perhaps more of a "design model") he has dreamed up in his head. 

How I Have This Set Everyday

Coltons "Work"

Yes that is an adorable picture of him in the frame right? :)

Kind Of "In Closing" 

I could go on and on about the many beautiful and amazing things Colton does and how wonderful he is but that would be giving it all away at once right?! Plus he's only 2,imagine how much more I will learn from him,about him. I'm so excited for that,he has to be hands down the greatest teacher I have ever had. Some of you who may personally know me know that I'm not the most patient person in the world and that I can be almost neurotic about certain things but with Colton I find more and more calm in my life. It's not because I have to (although you kind of do) but because I can't help it. My only wish is for the world to see him and all the joy and intelligence he brings. Everyone believes their child is destined for amazing and big things. I know my son is. All he needs is the chance just as every child does. Thanks for reading and for all of your support!

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

 

By MICHAEL E. YOUNG / The Dallas Morning News myoung@dallasnews.com

Published: 09 August 2010 

 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 

Just Wanted To Share :)

Some Good Information And Worth A Smile 

 

I have of course spent countless hours researching about Autism and signs,effects etc. etc. I have stumbled upon all kinds of information. Some scary and almost "fanatical" ,others very helpful and even worth a few smiles. I thought I would share some today. Enjoy! 

I would also like to mention I recently read an ebook by Alan Yau called "Autism-A Practical Guide For Parents". It is geared towards parents but anyone who is involved in an autistic childs life could benefit from it. It's free so check it out. http://autismsparks.com/

  

Telling The World

Sharing Our News

Today was another big day for us. Today is the day this blog went public and also the day we told everyone that is in our lives. The responses I have already received  have been so positive and encouraging. We also went and made an account at BECU for Colton aka "Colton Restad Benevolent Account" and we made a "GoFund" webpage that deposits donations directly into that account. I will include the link in this post. It was really nerve-racking to send that message. It's just so much easier for me to write feelings and thoughts than it is to make phone calls. I also don't like feeling like I am coming across as "needy". However when it comes to Colton there is NOTHING I wouldn't do for my son. 

On another note:

Last night my husband and I watched a wonderful movie about Autism called "Loving Lampposts". I highly recommend it. It may not be the way some parents of autistic children view autism but it reverberates much of the feelings and thoughts I have on it. I totally find myself feeling the same way as the people and parents involved with the "neurodiversity" movement. I believe the best way I can personally advocate for my son is by total acceptance and by not searching for a "cure" but searching for a way to make my son more comfortable in the world. My only job is to be Coltons mother, teacher,comforter,protecter and advocate. 

I end this with my thanks to you, those who have taken the time to read my thoughts and feelings and to those who have chosen to join us on our "journey". I couldn't find continual strength through this if it wasn't for you. 

http://www.gofundme.com/4qq4g8 

Today Was A Rollercoaster

A Crazy Ride

Well today was one of those days. You know the days that you wish you could hit the "reset" button. The hubby let me sleep in today which was nice. I really needed that. Colton seemed to be in a good mood. He was busy lining up his array of toys as usual. I learned that he really seemed to be found of the "Gumby" character and we got a few quiet moments while watching the movie. As it got closer to the time for his OT therapist Erica to arrive he began to get agitated. We had to skip his nap today in order to get this therapy visit which should already tell you that he was going to be a bit moody. Of course at around five minutes before she was due to arrive (therapy is in our home) he starting losing his cool. I could barely hear her knock but at least a couple minutes he was calm albeit very antisocial. It took him about fifteen minutes to warm up to her. After that he did pretty good. She was working on trying to get him to engage in play with her which of course he would do for about thirty seconds and then in typical fashion he would begin to gravitate towards other activities/toys or begin playing by himself. It didn't seem like we made much headway but he was being stable and calm which was a plus. After she left I could see he was still slowly getting closer to "meltdown" status. I had invited my mother and nephew over for dinner which is something I often do since to be honest being alone with Colton five nights a week can be exhausting and at times depressing. Don't get me wrong I love my son and am happy to be with him but ever since these issues began manifesting themselves more strongly and my husband started working nights I have found myself feeling very lonely and drained. He managed to eat dinner somewhat ok and interact with them. After they left we went up to my husbands work to bring him dinner which is something I do every night (isn't he spoiled?). Colton was getting closer and closer to losing it but trying so hard to hang in there, bless his heart. As soon as we left my husband to head home he began to wail, all during bathtime and pajama dressing he was whining. When it came time to lay him down he was melting down. Tonight was especially difficult. I'm not proud of it but after an hour of trying to console him I had to leave him to cry it out. Sometimes this only takes ten to thirty minutes before he falls asleep but tonight it was over an hour. I always am left feeling so bad and sad that I have to do this. I wish I could console him like other mothers can and that he would find comfort in me. Finding comfort and affection from me is rarely soothing to him. This of course is a low blow to me. I know he can't help how he deals or views things but of course I still have my motherly love and intuition to battle with. Well it's back to work for me tomorrow at least in a couple days I will get to begin my ten days off in a row. It is much needed. Colton does so much better when I have more consistency at home with him. I hate that our lives seem to be so limited. We are going to try and meet with a friend and her daughter Wednesday for dinner at a restaurant. Thankfully my husband will be going with us but I'm so worried about how Colton will be. I hate getting looked at by other people like I don't know how to be a parent or watch Colton get looked at like he's a bad child. That's one of the toughest things about Autism. Most of these children appear very normal and healthy but they act out more often than other children and this of course draws much negative stares and attention. Sometimes people even feel the need to talk to me about it. I always want to scream at them "He's just a child and he's having a bad moment. Give him and me a break!!" Why should we be made to feel like such social pariah. Do we need to buy t-shirts that say "Hey this is autism, get a life!?" NO! The world needs to learn to accept and respect my son, not to make my son feel different or detached. I feel so strongly that it is our responsibility (the world) to educate anyone and everyone about special needs persons and disorders because judging us and staring at us are not the answer. By doing this you are not going to make anything better. I think I will end this now. It's been a long day and I've got to go rest up for tomorrow because we just never know what that will hold. All I know for sure is that I love my son and I will advocate for him and autism everyday for the rest of my life.

Where to begin.....

How It All Started

I guess the easiest way to begin is well at the beginning. I will go ahead and introduce myself real quick. My name is Dominica and I live in Seattle,Wa. I'm towards the end of my 20's and on marriage number two. I work in retail and for the most part I like it. I frequently use "run on sentences" and probably improper punctuation. I'll ask for forgiveness for that now. I met my husband Justin back in 2009 and even though I was still going through a divorce and although I was desperately trying not to be "in love". With him, I couldn't help it. In April 2010 we began a relationship by June we were living together and by the end of that month we were trying to conceive. Pretty fast huh? Well we fell madly in love and he was fast approaching his 30's and I was going through some medical things so we decided "Hey we want to get married and have a baby. Why not start now?" I became pregnant in September 2010 but wasn't positive about it until October. We were ecstatic. We married January 23rd 2011 and on June 12th 2011 Colton Edward was born.

Ah here we are: the true beginning. My sons first day of life also felt like the first of mine. It was like "all was realized". The first moment I set eyes on him I knew my life was just starting and that it never would be the same again. I didn't know how right I really was.

Labor was difficult as it is for all women. Ten days before my due date I started to throw up everything,even water. We went in to the hospital and I began to run a fever they decided that was a good reason to start the pitocin. For all of you who have experienced it,  you know what I mean when I say it is no fun at all. I opted to try and have as natural of a birth as possible. About six hours later and with not much progression of dilation my son went into "distress". They immediately advised me to have an emergency c-section. I was really hesitate but my doctor explained that this could mean a number of negative things such as the cord being around his neck. Naturally I agreed to the procedure. I was still adamantly against the epidural. A little over an hour later my son arrived. 6 lbs 12 oz and 19 inches with a slight jaundice. Once they stitched me up and cleaned him up I immediately started nursing him. He was a natural. The nurses nicknamed him "The breast feeding Champ". I was already so proud. After a three day stay and lots of chafing of nipples (sorry for being explicit) we went home to my moms. Since I had a c-section and my husband wasn't too experienced with babies we thought it would be a good idea. It was during this first week stay that I noticed my son was using nursing more as a means for nourishment than bonding.

Some of you may be thinking "oh she's one of those mothers,the ones who read too much into things". I have to admit,I am not one of those mothers. I said nothing to no one and in fact questioned myself that maybe I thinking too much into it. So I let it go. Fast forward to the sixth week of Colton's life. He still hadn't smiled. Sure he had those "gassy smiles" but not a true smile. That came at about eight weeks. Again I let it go because I thought I was over thinking everything. I should also note that just a few weeks prior we discovered Colton had colic. 

For those of you who have experienced colic you know the chaos and emotional toll it can take. I had decided to take three months maternity leave but after four weeks my husband went back to work. To graveyards. Colton cried from 10:16 pm to 3 or 4 am every night for four months. So many nights of pacing back and forth with him,trying warm baths,playing Enigma songs hundreds of times over. With colic what works for ten minutes of silence one time doesn't work the next. It's safe to say I was having the "baby blues". Thankfully this didn't last forever. Granted we only had about a one week break before the teething began but it was never that bad.

As the months flew by Colton hit all his milestones right on time. He still had a horrible time going to bed, that really didn't change until he was about twelve months old. Even to this day it can take about twenty minutes to get him down, at this time he is almost 28 months old. He said his first word at ten months. "Mama". After that came "hi", "kitty", and "outside". I loved hearing him talk and babble. He walked at fourteen months, a tad bit late but not too far behind. I continued to nurse him until fifteen months and by then he was only whispering. This is where things became a little alarming.

At fifteen months Colton stopped talking. Completely. Of course I became worried but comforted myself by thinking "hey, lots of kids might stop because they are perfecting their skills" or something like that. I didn't hear him say another word until he was almost two. By eighteen months he at least was shaking his head for "no" and a month later he began finger pointing as means of communication. When he did talk again it was garbled and very few words. "Uh oh","wow", and "oh yeah" were the extent of his language. I was still concerned but a little relieved by this. At his eighteen month appointment my husband and I had expressed our concerns and were referred to a "early signs/birth to three" program. They in turn told us they couldn't properly evaluate him until he was two. So we waited.

At two years old Colton finally said a clear word. "No". We this time pleaded to his doctor to refer us the Seattle Children's Autism Center. Yes, we had come to believe that autism was maybe the best explanation to what we were seeing.

I should probably take this moment to explain the signs we found alarming. Other than the loss of speech/garbled limited speech we also noticed our son wasn't playing or interacting like other children. He was afraid of everyone except my husband, my mother and me. He was especially afraid of other children. We couldn't go to a park if there were other children there. Our son would scream and thrash about if there were. He had also began to become obsessively attached to certain toys,parts of toys and even songs. He didn't play with toys the same way other children do. He would spend hours lining up trains, the same way and pattern each time. He would become very upset if he or they were disturbed. He didn't show us much affection. We felt as if we were forcing him to hug and kiss us. He didn't want to engage us in play, he preferred to be by himself. These are realistically only a few things but certainly enough to warrant our concern. His doctor agreed and put in the referral.

Waiting

We contacted the autism center and were told it was about a three month wait for an evaluation. Thankfully while I was on the phone with them there was a cancellation. We had an appointment for August 7th 2012. We met with a nurse practitioner who got his history and observed him a short time. She found that there was sufficient evidence to see that there were indeed symptoms of autism present. We were then informed it was a nine month wait to be seen and officially diagnosed. We were upset to say the least over learning this. She had also suggested the "Birth To Three" program so we called and made an appointment with them for September 12th 2013. 

Birth To Three Aka "Skip"

We went to our local "Skip" office and had an evaluation done. It is good to note that they do not formally diagnosis. They only look for developmental delay. Colton reached, if not exceeded the criteria to qualify him for the program. It took about another month to begin the therapy, we are getting the first therapy session tomorrow. It is also good to note that at this time we had sought out another center to receive an official diagnosis and were about to get it.

The Diagnosis

We had Colton tested at The Center in Federal Way this occurred over the course of two appointments. One to get background, the other to observe and "test" him. This was a very trying process to go through, I felt like we just had to sit there and talk about all the things our son couldn't do. It was just so much..negative. So much crying,feelings of depression and confusion at times as well. We had  figured that it might be a good time to call our insurance and ask how autism related therapy was covered, just in case. We were angry and devastated to learn that they would NOT cover anything related to autism whatsoever. We then decided to check out what the state could offer. Again, we got hit with "we can't", apparently because my husband and I had tried to create a "modest" life for our son they refused to help, even though our insurance company turned their backs on us. This create so many feelings in me I can't even begin to describe them. Although we hadn't received the official diagnosis yet I knew in my heart that Colton is autistic. Sure enough on October 3rd 2013 we received the news. They placed Colton at level three(most severe) but due to his age they felt it appropriate to clinically write in the report level two. Even though we were expecting this it's like with anything else, you just can't prepare enough. What has followed has been a range of emotions. From stress to exhaustion. We will go forward with treatment regardless of the fact that it will all be out of pocket. It's worth it for our son. We don't wish to "cure" him, we just want him to have the tools and help he will need to navigate life. We wish for the world to accept and respect him.

Present

We have a long road ahead and while I'm not sure what exactly it is that I am trying to do here at the very least I am telling our story, his story. This blog is intended to come from my views. That means that if you are here to preach or push your opinions please leave. This is a place for story telling, for kindness. I don't care what your beliefs are, what you think of autism. If it's causes are vaccines,gluten etc. All are welcome here. Preaching and hating are not. I believe just as every child is different every parents experiences are different and every possible cause that may be for that child are different. In my own experience I'm keen on believing that my son's autism has been present since birth and that there may even be something there genetically. See I fall very slightly on the spectrum myself. All I can tell you that I know for sure is that Colton has autism but it does not have him. I will do anything for my son and to me he is perfect. I think this may be a good place to stop for now. More to come later. Thanks for reading.