Apr 02 2008
Be Aware
On September 6, 2006, my son Isaac came roaring into the world.
He had jaundice from the start and had to use a special “Bili-Blanket” that was strapped to him which made snuggling a little more difficult. He didn’t nurse, despite lots of time, effort, and tears on my part. Finally I just had to pump my milk and give it to him in a bottle.
When he was three weeks old, I became extremely sick and was rushed to the emergency room. Three days later I went in for emergency surgery. I was so heavily medicated during this time that I was no longer able to produce breast milk. I couldn’t hold Isaac very well, though I did insist that he be put in the bed next to me whenever possible. But I couldn’t do much with him, and when he was hungry or needed to burp or have his diaper changed, I had to give him to someone else. That lasted for several weeks all together. I can’t tell you how much guilt this causes my soul now. If only I’d held him more, if only I’d found a way to nurse him, if only I hadn’t needed so much medicine.
As the months went on, Isaac was always sick. Every time I took Isaac to the doctor, they discovered ear infections. He was in and out of doctors’ offices and hospitals for digestive and respiratory issues. I began to see that my baby was living in constant pain.
At 10 months old, we brought Isaac swimming with the family at our neighborhood pool. That was the last time I ever saw my baby act like a “normal” baby. Soon after that, everyone in the house got sick—relentless vomiting and diarrhea. Isaac took it to the next level, when the vomiting and diarrhea caused him to become severely dehydrated, to the point where his mind and body simply shut down. I went to get him out of his crib one day, wondering why he’d slept in so late, and found that he wasn’t actually asleep. He was completely still, lifeless, but his hollow little eyes were open. When he cried, it sounded like a tiny kitten. He produced no tears.
I raced him to the doctor who did some blood tests and then raced him to the hospital where he stayed for a couple of days.
Again, despite the pain and misery of his condition, Isaac still managed to smile. In fact, he smiled all the time— it was all he ever did! Pretty soon, I realized that Isaac had shut down mentally.
Nine months ago, Isaac went to a happy place and he’s never come back.
I threw a grand birthday party for Isaac’s first birthday, but I didn’t have any idea what to get him as a present. He had absolutely no interest in, or even tolerance for, toys. I realized I didn’t actually know anything about him. He had one blanket that he sorta played with, but otherwise, he had no interest in anything at all.
At his one-year check-up, the doctor found yet another ear infection. When I told her that he wasn’t speaking at all yet, she suggested we get tubes put in his ears so that the fluid could drain and prevent future infections, and also improve his hearing so that he could begin speaking.
The surgery was done and it went very well. However, while we didn’t have to deal with any more ear infections, Isaac never did start speaking, nor did he act like he could hear me when I spoke to him. His hearing was tested and proven to be just fine. It’s not that his ears don’t work, it’s that his brain can’t make any sense of the noises that he hears.
Still, it was hard to get anyone to give a crap. “Maybe he’s just a little delayed,” is what everyone would say. No walking, no talking, no emotional range, no attempts at communication through gestures, no interest in toys, no awareness of my existence. This wasn’t a little bit delayed. This was a serious problem.
At 15 months, I took him to a new doctor. The doctor did a more thorough evaluation and learned that Isaac did, in fact, display autistic tendencies. He sent us to specialists and therapists. One of them failed us horrifically. I won’t take the time to go into all the trouble this doctor with the Children with Special Health Care Needs has caused us, but rest assured that she has been a huge impediment to our son’s progress. The other, an early intervention program through the school district, has been helpful, providing therapy and evaluations. But their funding and resources are so limited that all we get from them is one in-home appointment every month and three therapy playgroups every month. Obviously, this barely begins to scratch the surface of his needs.
I recently read that one in 70 little boys in Utah is autistic. That’s an epidemic, my friends. And what exactly has the state of Utah done about it? Well… they’ve buried their heads in the sand and chosen to ignore it entirely. There are basically no resources, no funding (we have to pay for the early intervention program– most states offer it for free), nothing but brick walls to bang our heads against.
Along with that, my husband works for THE major hospital system/health insurance company in Utah. You would think that we couldn’t be in a better place for good health care. But his company, like the state we live in, has decided to sweep autism under the rug and refuses to pay for any treatment or services of ANY kind. Isaac can’t even see a mental health specialist here until he’s three years old.
If my child had cancer, every door would be opened to him. But he doesn’t have cancer. He has autism. And all the doors have been slammed in his face.
Apparently, this bubble that I live in (and MUCH of the rest of this country, not to mention the rest of the world) has decided to ignore this horrific epidemic. Thousands—millions!—of mothers just like me are waging a war and receiving no results, as little by little the system bankrupts us financially and emotionally, while our children continue to suffer and be completely misunderstood.
Today is World Autism Awareness Day. It’s a hard day for someone like me—it means that the news is full of tear-jerking stories, descriptions of what life with autism is like, stories about mothers who suffocate their autistic children because they just can’t deal with it anymore. Statistics are given, such as, “80% of married couples with autistic children are divorced within ten years of the child’s diagnosis.” I can barely turn on the TV without alternating between wanting to scream and throw something at the stupid screen, or bursting into tears wondering how on earth we’re going to keep our heads above water while we deal with a lifetime of this.
And yet… thank goodness for World Autism Awareness Day. Sooner or later, we’re going to be impossible to ignore. Sooner or later, enough laws will be passed and enough insurance companies will be sued. Sooner or later, someone will give a damn.
I’m praying for sooner.
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My heart goes out to you and I want to offer you words of support, love, respect, awe, sympathy… but I’m stumped. I’ve been staring at the blank comments page for a few minutes, tearing up and losing words. (I’m at work, I don’t know how I’m going to explain the tears)
Anything I write sounds hollow. So all I can do, is offer you my thoughts and prayers.
And then the tears welled up in her eyes.
I’m so proud of you and Isaac and the strength you have displayed throughout his hard little life. I hope things get better and I pray for your family every day.
Love you darlin’.
My heart is aching for you and your beautiful boy!
He is a lucky boy to have a mom like you. I hope you know that. You will be an incredible advocate for him throughout his life. You are amazing and I love you! I wish I could send my CA resources to you.
((hugs))
My heart goes out to you, what a hard road ahead for poor little Isaac. I have been reading about autism today (CNN ran several articles) and thought I’d share this one - you’ve probably seen it but I thought it sounded so hopeful and then I read your post and so I hope you don’t mind that I’m posting this link.
http://www.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html?eref=rss_topstories
my heart goes out to you all…I will continue to pray for you all.
Hang in there…wish I had words that would help.
Like Madeleine, I am at a loss for words. There are no adequate words. I’m praying for sooner as well.
Brill, that was heart wrenching and terrifying and I can’t believe you’ve had to go through that!
Amazingly, I have no words for this. Just lots of love and prayers for you and the family. I hope they have answers soon.
Hello to you and your sweet boy!
It is Autism Awareness Month and Becki over at BlogMommas has a couple of posts. She is a wealth of info. Also has an autistic son.
http://www.blogmommas.com
Thinking of you in this battle and also knowing that the love you feel for you sweet son will see you through. I am sorry that we, as a nation, seriously lack resources in this area!
Powerful post, Brillig. And we should all call our representatives and Senators and push them towards correcting this travesty. And you’re right - it’s not just Utah.
Huge hugs and prayers that the Brillig family will be whole and well.
Many people go through life never realizing or appreciating what a miracle it is to a) get pregnant, b) STAY pregnant (my sad experience) c) deliver a healthy baby, d) have a physically & emotionally healthy child. Well guess what, YOU DO!! You get that. And that knowledge has value, power, and influence. It is my belief that there will always be unhealed wounds but know this, that we find TRUE solace, peace, and comfort from others who GET IT. I totally sensed that from you at my baby shower (so nice of you to come when you barely knew me by the way). It’s almost instant, at least for me; when I meet people, they get it or they don’t. We are actually the lucky ones in many respects. But day to day can be REALLY tough. Live it, feel it, and stay honest.
*hugs* It is awful you can’t get services for your son. I live in MI and they seem to do a good job of diagnosing and intervention for autism. I hope things change for your family.
I’m so sorry for the struggles you’ve had.
Oddly enough, I’ve been “secretly” studying autism on my own for a long time. I have never been able to figure out the same things you are frustrated with. It IS an epidemic. It IS serious. It is almost OUT OF CONTROL and nobody wants to acknowledge it. Resources are scarce and families are suffering. I feel helpless from an outsider’s point of view and can’t imagine how it must feel dealing with it first hand. I’m so sorry and hope it is SOONER too…
Oh, Brillig ~ I wish there was something I could do… that I could even give you a break for just a day. I know how hard it was for us to get the care we needed for our little girl, and that was in a state that had a good Early Intervention program. In our case it wasn’t with autism, but a rare birth defect combined with a rare disorder. I know that desperate feeling of trying to get someone, anyone to listen that there is a problem. And it breaks my heart to know it is happening to someone else… to you.
Not long ago, you once told me how very often you are up late into the night, rocking a little one. I am too… and I hope it helps to know in the middle of one of those lonely nights that I’ll likely be up as well… praying for you and your precious little boy. Praying that something changes soon. It just has to.
Hugs,
Michelle @ In The Life Of A Child
I’m interested in what connection you make - if any - between the lack of “bonding time” and breastfeeding and your son’s subsequent problems. I have to imagine that you think they are at least somehow related, or you wouldn’t have included the details of those circumstances in your post. Do you think the two things really have anything to do with each other, or is it just maternal guilt trying to figure out the big “WHY?”?
I am asking in a spirit of love, compassion, and genuine curiosity.
Heartwrenching. Thanks for putting it out there. Having lived it too, I can vouch for its accuracy…
We will never, ever give up… It is so wrong that your son is not receiving the services he needs and is entitled to. It’s sad that our kids are discriminated against for even their basic healthcare needs.
It must change. It will change … We’ll never give up.
Brillig I’m heartbroken for you and your son- but more then that I’m furious at the medical system and insurance companies and the way that children with autism are treated.
I got goosebumps while reading your post. I don’t know why. I share your sentiments. I really hope that insurance companies, medical system and the government would finally take notice of this condition. Hope we get support soon.
I watched Jenny McCarthy last night on CNN and got so angry, so, so angry that Autism is pretty much ignored.
It’s disgusting.
As for Isaac - you just keep on doing what you’re doing - fighting for his right to get the services he needs.
You’re still in my prayers girl.
There are no words.
I don’t know what to say hon. I’m so sad that you’ve all had this battle, and that others are so blind to it. Isaac has the most wonderful Mummy and Daddy and family, and he will be loved, because you are the best at doing that. I hope you can find a way in, or that he can find a way out somehow. Hugs to you and your gorgeous little boy.
Sooner. I vote sooner too.
Brilliant post babe.
I know there is nothing I can say that will make this any better, but if there’s anyone who can fight for your son with the ability to make a difference, I know it’s you.
My younger brother was diagnosed w/ diabetes at the age of 4, and my dad has never forgiven himself- but the diagnosis has made us all stronger and we all are much more aware of each other, because we understand that life can throw you curveballs, but you’ll always be in the game. Cheesy metaphor, sorry!
Love you- I’m here if you need anything.
I had no idea that Utah was failing so terribly at services for autistic children. Here in Minnestoa we’ve had a tough time accessing some services for our son but at least those services exsist and we’ve been able to use them. I’m beyond angry at what you and your little guy are dealing with. What’s most distressing is that your story is just the tip of the iceberg. There are countless children (many without parents as determined and dedicated as you are) who are having that same door slammed in their faces too. It’s so distressing. I’m keeping you all in my thoughts and wishing you nothing but the best.
I’ve had several experiences dealing with Utah’s dysfunctional mental health care system. It irks me to no end that mental health problems aren’t treated with the same urgency as physical health problems. To me, they are the same thing. They are both health problems that need treatment by medical professionals.
Your story is heartbreaking. I really, really hope that things change sooner than later, too.
I am just interested to know what dietary changes have been recommended. When I was having some health problems, I started a gluten free diet. Subsequently, I began reading about how gluten and casein free diets have shown results remarkable changes for autistic children.
All the best!
Mental Health issues have had such a stigma attached to them for so long, and it just seems like progress away from that is so slow.
Not that long ago though, children with Autism were faced with a lifetime of being institutionalized and treated like animals. Parents of Autistic children were urged to institutionalize them, to abandon them, to give up. Some parents do give up on their children, but I know that you and your husband are not those kinds of parents. You will fight for your child, and you will give him a better life.
He is lucky to have a Mom like you.
My heart goes out to you and your family. What a terrible situation to be in without any support from the medical field. That is totally unfair. I pray that something will happen sooner, as well.
Wow, what an amazing post. My oldest boy was jaundice and wouldn’t breast feed either. I did the same thing for the first six weeks, pumped milk.
You’ve made such an excellent point here i that there is a tremendous amount of treatment available and funding for research for cancer however that doesn’t seem to be the case for autism. It seems to be a largely ignored illness by many. Why is that ?
I can only hope that outspoken and wellspoken parents such as you continue to speak up for their loved ones and stay in the faces of those that need to hear about it and can make changes.
I’ll keep Isaac and your family in my prayers!
Wow. That was really powerful. I have to admit I’m completely ignorant about autism, but I have been well educated in incompetent doctors.
I wish you all the best with your son.
Even being part of the epidemic isn’t helpful. Things are so different state by state, even county by county. Having banged my head more than once on some of the very same walls, I wish there was more I could do to help. Issac is a blessed boy to have parents who care enough to do the wall banging. There are doors there. They are just very hard to find.
Oh, Brillig…I am really sorry for all you’ve gone through just trying to do what is best for your son. No wonder you are such an amazingly strong and wonderful person.
My nephew has Asperger’s. When he started school in their little rural town, no one had even heard of it, much less knew how to teach him. My sister has struggled so much trying to educate those who are supposed to be teaching.
I want to scream after reading this–it just isn’t right. Then I want to jump over my backyard fence and ask the mother back there what she’s done here in Utah for her three boys who are on the autism spectrum. I keep thinking there’s got to be something, someone, somewhere who can help–but I’m sure you’ve already uncovered every option on your own and feel far more helpless than I do right now.
Prayers coming you way.
I just got this in my inbox, and thought of you: (I also looked it up on Snopes.com and it checked out.)
The band, Five for Fighting, is generously donating $0.40 to Autism Speaks for *each time* the video is viewed the funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.
Link below:
http://www. whatkindofworlddoyouwant. com/videos/view/id/408214=20
You guys have an amazing family and I just know you’re going to pull through this and find the help that you need, wherever that may be. And like you said the other night, he is always going to have an older sister and two older brothers that ADORE him. That is priceless.
I just posted about your post. My prayers are with you all.
I cannot imagine how difficult this must be for you to deal with it, but I know that you are so smart and so caring and you will deal with it. It’s a shame that Utah is so backward in their thinking about autism. It is definitely a very real problem. My heart goes out to you and your family.
This totally sucks. I’m so sorry there are not more answers for you.
A friend of mine just started a blog, and her son is on the autisitc spectrum: lifeinthegreyarea.blogspot.com
I’m so sorry it’s gone so very badly for you, but sadly enough you are not alone, at all. I do wonder what that woman did to him (I wanna go give’er a piece of my mind). I at least got a diagnosis out of a man there, but there’s not much to do except through the school system. It is really frustrating. Keep looking and praying for what will help your boy the most or where you can get the help you need. I know from past experience that so often the help comes too little too late and it makes me want to scream, and no matter how much you try as a mom, sometimes it’s just not enough. Then just when you think there’s no hope, there’s a breakthrough here and there. Life might not be perfect, but it’s better. Please don’t feel guilty at all, just do your best. Hugs, hugs, and prayers from me.
Tears are rolling down my face…..how I ache for you and your family. Today (April 2nd) is a step in the right direction but I agree, sooner is better.
I’m praying for you and yours.
All I can do is cry and pray and try not to be as angry as the situation warrants. I hope you find the help you need for him, wherever that might take you. ~hugs~
Anne,
My heart goes out to you. My little sister is autistic, although not to the severity you’re describing with Isaac. Although, as a baby, she was exactly what you’re describing. The therapist gave us physical therapy exercise to do with her, basic exercise that reconnect the brain and then really rough exercises, rough and tumble kind, to stimulate her brain. It was a long, long road, but at two or three she began to respond finally. The day she crawled across the living room floor, pulled herself to a standing position and bit my brother’s toe was so hysterical, and triumphant, in so many ways.
It’s a long road, my friend. But there is hope. Believe me, there’s hope. I will keep you in my prayers, always. You know how to find me if you need to talk.
Oh darling bee. How many times do I have to tell you that there is a lovely, lovely kingdom where all children are valued and their health care needs are valued and important? Where some children (like mine) have friends who are autistic in their (”mainstreamed” for lack of a better word) classrooms with comprehensive assistance and welcoming words. Where state-funded Early Intervention IS FREE and comes multiple times a week to your home, the child’s school, even the grandparents’ house (not that I know from experience or anything). Oh yeah - some people have a problem with our state because we also believe in marriage equality but isn’t that funny how we value kids’ health/well-being with marriage rights? Hmmmmm……
But seriously - once a flipping month you get at home services? ONCE?!?!? I know you wrote a soulful, heart-bearing piece but that just stuck in my throat and made me want to scream. You and your little man need much MUCH more services. I just want to scoop you all up and bring you here. Right now. NOW!!
Thank you for sharing your story - I know it is hard to relive an experience like that. I so want to encourage you that Autism IS Treatable and recovery is possible. Never give up hope and never stop trying everything you can to help your son.
I understand all too well. (((HUGS)))
I started reading this story last week in between work at my job…and I stopped because I thought it deserved more of my attention.
So I came back now and read your story again. And it made me quiet and sad. i wish i could do something.
Since I read your post about a potential move already…I really hope you can move to a state that provides you more help on this matter.
I am thinking of you. It’s awful when health care turns out to be anything but. I remember some of the sadists involved in ante-natal care who clearly hated all pregnant women and let it show, so I can sympathise. Good luck.
I am thinking of you. It’s awful when health care turns out to be anything but. I remember some of the sadists involved in ante-natal care who clearly hated all pregnant women and let it show, so I can sympathise. Good luck.
My heart goes out to you. I am really lose at what to say. Just don’t give up and keep trying….
Wow. Just WOW.
What a story. What an amazing mother you are.