kai's autism

DAN Misery

2008-08-21T15:52:00.000-07:00

Well, this protocol is just as much a pain as I thought it would be...more, in fact, because there are a lot fewer non-oral supplements than I had been led to believe. I have to say that I am almost rooting for it to fail, so I can stop this gluten free madness. But, I think it might be helping.

Kai seems to be more verbal than normal, and he is making little jokes. He never did that before. Today he picked up a piece of packing popcorn and said "Your tooth is missing". Very unusual for him. The thing is, that his development has always come in spurts. How am I to know if this is just coincidental?

I guess I will stick with the parts of the protocol that I am having success with for a while, and then pull them and watch for reactions. Boy, I hate experimenting on my child. I wish there were some solid studies and research on this stuff. And I wish that I was finding more successful ways of getting these supplements into him. And I wish that Kai could tell me about his first day of school... Maybe next year.

To DAN Or Not To DAN

2008-07-25T21:53:00.000-07:00

That is the question.

Today we went to the DAN Dr. in the gorgeous hills overlooking the beautiful St. Helena wine country. It was worth the trip for the drive and the view. And the Dr. was nice. She has 3 kids on the spectrum and only charges enough to cover her receptionist and insurance. Compared to others, she has incredibly reasonable prices (but still quite a chunk of my budget by the time you add it all up). It is quite clear she truly believes in what she does and practices what she preaches with her own family. She doesn't do chelation, which I would not consider anyway. Oh, but what a commitment this all is!

Gluten Free?!? That's all Kai eats! I tried it...in the before time...and it was torturous. He will starve himself to death. Perhaps that's an exaggeration, perhaps not. I'm serious. I am so stressed out even thinking about it that my hair is falling out, I'm breaking out in hives and my eyes are bulging out of my head. OK, maybe some hysteria there, but gheeze, what am I going to do? I've already invested too much not to give this a serious attempt. But you don't know how much gluten free food I have bought and cooked, only to throw it in the trash, or eat it myself (Yuck! I agree, Kai).

Next come the labs. Can't wait to hold my screaming child down while the suck his blood out, all too slowly. Then the supplements, thankfully many are available in creams, but all are pricey. And then the waiting and watching, trying to guard against seeing what I want to see, instead of what is actually happening.

Am I really doing this? I guess I am. I don't want to wonder forever if it would have made his life easier and his struggles milder. I know he doesn't eat well, so in some sense, these supplements are bound to help. If I haven't seen amazingly accelerated progress within 6 months, I can always stop.

What do I have to lose...besides my money, my sanity, and the ease of feeding my family. OK, that was ridiculous, it's already impossible to feed Kai, there has never been any easy way about it. But, after all this, I may be happy to go back to our current level of difficulty.

Or...maybe...just maybe, it will work. And we will all live happily ever after. That happens sometimes, right?

Changes-Turn and Face the Strange

2008-07-24T08:39:00.000-07:00

It's been a while since I've had something to say...well, not really, but it's been a while since I felt like writing anything down. But, here I am again, struggling with new decisions; change is coming our way and once again, I am trying to navigate the course.

Tomorrow we (Kai, that is) have an appointment with a DAN Dr. I am so torn about this issue. Am I wasting money, time and energy that could be better spent elsewhere? Or, if I don't do this, am I losing an opportunity to help my child? I know that the Dr. we are seeing is honest and does what she thinks is right. She has 3 children on the spectrum herself and her prices are set low (extremely, according to my research), so I am sure it's not a scam situation. But, I am also sure that our autism is of the genetic, always there variety. So, I am less sure that the protocol will be helpful.

The one thing that makes me sure I will follow through with the initial appointment is that most of her supplements are given in a cream form. Kai is a terrible eater. He has many sensory issues that work against a healthy diet, so I KNOW that he has nutritional needs that are not being met. For that reason alone, it will be worth it to get some extra vitamins, etc. into his body. But, she is also a huge proponent of the GFCF diet, which we cannot pull off, for the reasons listed above. Kai will simply stop eating. He is that serious about it.

I guess the reasons that I am so torn about this, besides finances, is that most of the people I respect seem to think that the DAN protocol is relatively useless. But, on the flip side, most of the "recovery" stories I read use the DAN protocol. AAAARRRRGGGGHHHH!!!!!! And, I really do wish they would use another word besides "defeat". I am not looking to defeat my son and his autism, I am looking for a way to make his life easier and healthier.

OK, enough of that. How about Kindergarten? Yes, we are off on a new journey this fall, with new teachers, new kids, new buses, new routines. Today is Kai's last day of summer preschool.

Happy/Sad...

My baby boy is growing up. I had such bad teachers in my early education that I am terrified of the same happening to Kai. I have met the teacher, observed the class, discussed it with the appropriate authorities, and on and on and on. And I am still so worried. I know that people behave differently when they are being watched, so rather that concentrate on the teacher, herself, I tried to monitor the children and their comfort level with her and their happiness. I have to say that it looks like it's "all good". So, why am I so worried? Because I am a mom, it's what we do. Right?

New doctors, new schools, my husband is looking for a new job, I am considering working with other autistic kids on the side... Too much change. I hope we can all turn and face the strange. And I hope it doesn't bite.

All Done!

2008-05-07T14:06:00.000-07:00

We are, as Kai would say, "all done" with potty training. Not that I don't anticipate an occasional accident...

It took about 2 weeks of intense restriction of pleasurable activities, but it all finally clicked into place! Kai now goes to the bathroom all by himself, he doesn't even need a reminder anymore. I can't believe it finally happened!!!! And all I had to do was remove all the joy from his life and make earning it back contingent upon successful elimination in the toilet. And we really did...it was a miserable couple of weeks.

At some points, I really worried about whether or not I was doing lasting damage to his psyche. He would wake up sobbing and seem so depressed all day long for days on end. Had it not turned around when it did, I probably would have ended up giving in. I really don't know if I could have lasted another day seeing my happy, sweet boy so sad...devastated...bereft...none of these words seem to be strong enough to capture the despair in his eyes during that struggle.

But, when it was over it was over. It all just came together all of a sudden. He just got it. We have had no serious problems since the day he finally gave in. He had a couple of accidents when he was ill, but that was unavoidable (he was very sick). And, he has stopped expecting to be rewarded every time he goes. I thought that would take months, but he just stopped asking for treats! All on his own! I am still in shock.

"Great Job, Kai"

Kristie

Potty Training Hell

2008-03-26T16:36:00.000-07:00

Kai starts kindergarten next year. I really want him potty trained before he starts, but he just won't do it. After years of trying (with minimal success) I finally brought a behaviorist into the picture. The good that has come of this is that I am now clear that this is a control issue, not a communication breakdown. The bad side is...everything else.

I am basically denying him everything non-essential...snacks, trips to the outside world, television, and anything else he asks for. He can have them all in exchange for the desired behavior-pooping in the toilet. We have been trapped in the house for two days now. The first day he cried and cried and I felt so bad for him, but today he just stopped asking for these things and says "No!" when told to poop in the potty. I hold up desired foods in front of him and make him sit on the toilet, but it is all to no avail.

I know that this is only day two of this stepped up version of behavioral therapy, but I swear if he doesn't crack soon I am going to lose it. I have a feeling that he can hold out for a long, long time. This battle has been going on for over a year, but the intensity has been elevated recently. This is without a doubt the hardest hurdle we have had to overcome. I never imagined that I would still be fighting this battle when my son was almost five, but then I never imagined that we would have many of the struggles that we have had.

Hopefully, the next time I write here I will have something happier to say...

Kristie

Google U

2008-01-15T10:36:00.000-08:00

One of Kai's classroom aides is the mother of an adult with PDD-NOS. She recently commented that she was glad there was no internet when her child was diagnosed because she would have "gone crazy" obsessing over all the information available. I have to say that I can see her point.

I spend a lot of time at the computer researching autism...stories, therapies, education, IEP processes, biomed, schools, laws...the list goes on. Sometimes the internet is a wonderful tool, enabling me to find things I would otherwise never hear about. I am up to date on the latest genetic science. I am able to connect with other people whose stories I can relate to so that I don't feel so lost and alone. I can find out what my rights are before I have to make decisions about Kai's education. The list goes on and on.

But, other times the internet makes me feel angy and inadequate. There are sooooo many therapies available that I cannot provide to my child. There are a myriad of biomedical measures that I might like to try, if only my insurance would cover them, which, of course, it won't. There are centers to help with auditory processing and sensory integration, workshops on educational techniques, conferences and symposiums, all offering things that would very likely be helpful to my son, but not in the budget.

There are stories of amazing recoveries that make me feel like I am failing my son because I have not been able to achieve the same results. There are stories of children whose lives are much harder than Kai's that break my heart and make me feel grateful that our struggles seem mild in comparison. There are posts by adult autistics who seem so angry at their parents and the establishment for the techniques used to treat them, leaving me with an overwhelming fear that Kai will feel the same way if I make the wrong choices.

For every positive thing that the information age provides, there is a negative. I am glad that I have access to all the compiled knowledge of the age and all the opinions of autistics, parents of children with autism, and experts, but sometimes it seems as if I am drowning in a sea of possibilities. If someone could just toss me a life preserver, I'd be much obliged.

Kristie

Dazed and Confused

2007-11-27T11:54:00.000-08:00

A year into our personal journey through the autism experience, I find myself constantly confronted with the never-ending issue of cure vs. acceptance. As a non-autistic parent, it seems to be a road covered by potholes and pitfalls and the fear of misstep is ever present. I often find myself lost, afraid that I will take a wrong turn and injure or lead my child astray...or fail to bring him even near our intended destination of independance and self-advocacy.

I follow discussion groups but fear to join in, because of the anger or pain caused by a simple choice of words. The wrong language seems to cause harm to the autistic community (or is that "community with autism"?), although I don't think that the issue is intent related, in most cases. We are often scared and sometimes angry and we seek that universal language that is acceptable to all and harms none, but it does not exist.

I love my son, autistic or not, and I accept him for who he is. I would never want to change his nature, but I strive everyday to help him connect and communicate with the world around him. I need to know that if there is something I can do to make his life easier, I have at least tried. I need to know that if there is something physical that can be healed, I have at least tried. I need to know that if there is a better way to help him communicate, I have at least tried.

But, having listened to what so many adults with autism (or is that "autistic adults") have to say, I fear that my child will someday view my attempts to help as judgements of his inadequacy. This is not how I feel, and it breaks my heart that so many people feel that the community around them sends this message.

There is so much anger surrounding the issues of environment vs. genetics among the autism (and autistic) community, as well. Everyone is so busy arguing about the causes of autism and whether or not money is best spent on research or education and services. Personally, I think it is obvious that both are necessary endeavors. Researching the causes of autism does not have to end in eugenics. A better understanding of autism can be beneficial to all of us...parent, educator and autistic (person with autism) alike. And, the need for services is obvious. Learning about the causes of autism does little for existing autistics ("...") in the here and now. We need it all, it does not have to be either/or.

If we could all stop the personal attacks and realize that everyone is trying to do their best to help their loved ones or themselves (well, almost everyone), then we would waste a lot less of our energy battling each other and have more for helping our families. People need to be less worried about the semantics, and more concerned about the intent behind the words. If the intent is loving and helpful, then we should all get past the missuse of a word.

I am admittedly new to this journey, and I realize that I lack the personal perspective of autism, but I think I will save my strength for battling the school districts and insurance companies. I do not have the time or energy to fight with other travellers about the appropriate path. I welcome input and advice reading my map, but I cannot stop to indulge myself in road rage. My son and I have places to go and people to see...but I may be the only one making eye contact.

Kristie

Kai has autism

2007-10-07T14:42:00.001-07:00

When Kai was about two, I began to wonder why he was not really talking yet. Of course, his pediatrician said not to worry, boys talk late sometimes.

At two and a half, I asked again why my son was not talking yet, only to be dismissed, as if I were just another neurotic mother, overreacting to imagined issues. I was told to wait, and if he had not progressed, we would look into it when he turned three.

When Kai turned three, the doctor suggested that I make an appointment to have him screened by the school district. Finally, a course of action had been proposed, and I leaped into motion.

I called the school district to request a screening, and after two weeks of being bounced around from voice mail to voice mail, I finally got an appointment to have him observed...in a month.

After an excruciating wait, he was screened. This appointment was just the "entrance exam" to have further observations approved...after three more observations, painful delays and lots and lots of stress and worry, they finally dropped the A-bomb.

"Your son has Autism"

This was in early December of 2006. By the end of the month, Kai had been approved to begin his first therapy...special education classes through the state run preschool.

This was the first time I had been able to DO something to help my child. What a relief and yet, I knew it was not enough. We added other therapies to his schedule and, finally, a year later, I began to hear about biomedical measures that I could start on my own without the help or approval of our pediatrician.

There is such extreme time pressure put on families to help their children overcome the debilitating effects of autism, and yet, there is very little guidance from the people you rely on to guide you. Doctors, teachers, therapists...they are all limited in what they are even allowed to share with you about therapies that have been successful for some, but are not proven for all. Research leads you down so many avenues it becomes hard to separate legitimate therapies or biomedical interventions from those that offer false hope and financial peril. Everything costs a lot of money and most insurances will offer little to no help with anything.

A year later, I am finally beginning to feel like I have a solid plan of action including both traditional therapies and new biomedical treatments, but I don't know if I will ever feel like I have done enough for my precious baby boy. I don't know if I will ever stop feeling angry and betrayed for losing a year that I could have been using to help him, because I was not encouraged to take action. I don't know if I will ever stop blaming myself for not educating myself sooner and taking action anyway...

But, I do know that my son is growing and improving everyday. I do know that he is a wonderful child who will have a world of opportunities to explore in life. I do know that autism is not the end of all my hopes and dreams for my child. And, I do know that I will love him and be here for him whether we conquer autism or not.

I just wish I had someone to tell me all this a year ago when I felt so lost and alone.

--Kristie