This is a phrase heard by ALL parents of children on the autism spectrum at one time or another. It is aggravating, annoying and often downright infuriating. I heard it all, tried it all, in the early years in my desperate search to help my son and myself. I got told to put some special clay in the bath tub that would "detox all the metals out of his system and make his autism go away", my Mommy gut screamed NO and QUACKERY...that same website it now banned from selling to consumers in the US by the FDA and can only handle international orders. Not surprising considering that when we did fork over thousands for a DAN doctor (Defeat Autism Now) he said this practice could actually be harmful because it would detox too quickly and heavily and possibly even cause damage. In the early years I read the books, including the witty words of a "porn star turned autism advocate" who seemed to be able to draw people in with her promises of "windows in which you can cure", special diets and reigniting the vaccine debate all over again. I've done the supplements, pro biotics, prescription anti fungals in high doses from the DAN doctor to "heal" the gut, 16 months of the wallet breaking GFCF diet, which has earned it's own honorary title as "THEE autism diet". The antifungals proved very intolerable for him and made him crazy and bonkers, the yeast die off was too powerful. Instead we went slowly with probiotics. He hasn't had to be on an antibiotics (thanks in part to 3 sets of ear tubes) since the initial onslaught that caused the gut trauma in his early toddler years. Once we detoxed his gut, things were pretty good. Initially we saw results with the GFCF diet, it was like a detox almost, but slowly the results dwindled, and I've resigned myself to the fact that anything we saw was most heavily influenced by the placebo effect. In fact, the diet became a hindrance pretty quickly once "Buddy" got into 4 year old kindergarten and began to realize that other kids were eating cheerios and goldfish while he was eating bland starchy crackers equivalent to wallboard and drinking rice or almond milk. (He won't go near any milk alternatives or GF stuff now). He got too smart and began swiping the snacks he wanted any chance he got, he stole boxes of the coveted cheerios off the supply shelf at school and downed them before anyone could stop him. He learned how to climb on the stove and would eat ANY ordinary cereal he could get ahold of. I found him in a pile of wheaties devouring them by the handful like an addict with his poison on a couple of occasions. It was over for me when at 5 1/2 years old he threw himself down on the floor of a mega grocery store wailing and creating a scene because he couldn't have cheerios. We weren't talking about sugar bomb cereal or even anything horrible for him, just cheerios. I felt his pain at the diet we were forcing on him. We had normalized his bowels a few months in to the diet, and so it even got to the point where he became constipated because the diet is so low in fiber. He became an extremely picky eater, which unfortunately has carried over into his grade school years. After 16 months of the misery, with the nod from his DAN doctor, we took him off the diet. There was nothing more it was going to do for him. We also ended our relationship with the DAN Doctor at this time because we lacked ability to even get most of the supplements in him, even by hiding them in food.
We've tried enzymes, mega dose vitamins with stress on specific vitamins, liquid lithium and blah, blah, blah. All this was because everyone around me was just certain that modern medicine would do nothing positive for my child and would just "drug him up". Eventually I gave up on the "alternative" approaches and we frankly went through a mourning period all over again. During this time he got an often awful diet and given in to an awful lot, because DH and I were just plain tired. (DH for those not "net savvy" stand for "Dear Husband" in a post where names are not allowed). One thing we never have let up on is therapy, tons of it. Buddy got 3 years intensive in home ABA therapy and has continued with strong respite workers in the 2 1/2 years since that therapy ended that constantly challenge him to continue. He's changed schools twice now as of this fall in order to constantly try to meet his needs and challenge him further. During the 7 months that he had the service dog that was placed with him, enormous demands and adaptions were asked of him, and he did his best to meet them in spite of the challenges of a dog that was ill tempered for such work, they made their own team and did the best they could until the bond was broken. Buddy is still grieving the loss of his dog, it's talked about daily, but if you ask him if he wants him back, or even if he wants another dog, his answer is solidly and consistenly "No". (Doggy did get a wonderful home through a rescue without children or men, the two things that proved too stressful for him. The last time I received pictures I couldn't have been more happy).
However, in spite of all of this, what has helped my son the most? Second only to ABA therapy I have to say medication. Good old western medicine of the psychiatric variety. We had to wait on a 6 month wait to get in with a pediatric psychiatrist, but she was a bigger help than I could have imagined. Unfortunately she moved out of state so our relationship was short lived, less than a year in duration. It couldn't have been a bigger God send though, because the Dr. he sees now really gets him and gets what is going on inside of him. I've often heard of response of children on the spectrum to SSRI's (antidepressant/anxiety class of meds) being mixed, but many favorable. However, google it and there are always those negative spins that tell you it's worthless or even harmful. Whats a parent to do? We tried the first year plus of medication going the antipsychotic and ADHD med route, with small successes. Three weeks ago, his child psychiatrist made the suggestion that we try an SSRI class drug in order to combat the obsessive compulsive type behaviors because it seemed his aggression was directly related to the things he was obsessing over not being made to happen. This has been my gut feeling, but it has taken this long to get a provider to get it and see it too. In the three weeks on this medication, we have seen more changes than anything we've ever done for him, second only to ABA therapy. This was the best decision we ever made. We did just have a terrible evening, but the all day before that was just awesome. My son actually laid on the couch and watched TV like a normal kid. Every so often he'd get up and go find Daddy who was doing yard work, or come find me, but he did not obsess nearly as much. He even went with "Sophie" and I to the library and was well behaved. We also finally have something prescribed for sleep. (Yes, I've tried melatonin and all other manner of natural or homeopathic remedies for sleep, none work any longer). It's finally proving that with Rx help we can get him to sleep before midnight and get him a full 8 hours.
So, that is my soap box for the night...I often kick myself for spending many thousands combined between myself and generous family members before giving in and just going the traditional medicine route, the one that actually helped him and gave him back some dignity and quality of life.
Today we are busy working on behaviors having consequences. That is not an easy subject for any parent and child to broach, it's just even more of a challenge when the person you are teaching has auditory processing delays, a strong will and had previously been allowed to get away with alot because his parents had no control over him. Now we feel we have been given the keys to the boat and can steer it in the path it needs to go. If you are of the praying sort, we ask for prayers as we begin to navigate this journey toward helping "Buddy" become the well mannered boy I know is in there as we quickly usher him from little boy to young man".
Saturday, July 28, 2012
Friday, July 27, 2012
Where have you been?
On Blogger that is...A great many people have wondered if I gave up blogging for good. However, it's really just a case of life gone wild and I simply had to hang it up for the last 5 months or so. My last post on "Autism Insanity and Donuts" was in February 2012. My how time flies! Unfortunately, some circumstances in our home and life required me to retire that blog and restrict it to only my own personal viewing. However, I am back and have a new gig now...I think the title is fitting, and lover of musicals that I am, "It's a hard knock life for us" was always one of my favorites from "Annie"...not that I have ever seen the theater production....I haven't, but someday when it comes around again and my daughter is old enough, I sure will. I always loved little red headed and misunderstood Annie, and so, since I have a misunderstood red head of my own, whom much of my blogging is devoted too...and most would agree we've gotten a PhD from the "School of Hard Knocks"...a hard knock life it is!
I will not go into any detail as I have been cautioned by legal counsel not to blog about the subject, or to blog with care if I do, I will simply state if you were unaware that we no longer have our beloved service dog that had been placed in our home with our son. I have chosen not to use my kids real names on this blog for a few reasons. My son has chosen to be called "Buddy" for his online name. Our daughter has come up with a variety of net nicknames...today it's "Sophie"...who knows what it will be tomorrow. Because public blogs are so searchable, I will not be using my children's real names in this blog. I won't even type the dogs name because I know that would cause it to show up on search engines and there are people out there that I don't even want reading my new blog. We are doing our best to let lawyers do what they do best and move on with our lives. If you have not heard the story and wish to, please contact me privately and I'll tell you what I can when I have a moment. If you were a donor to our cause, we thank you immensely for your support and when our attorney gives us the green light, you will be contacted about our status and intentions. We do feel a service dog would benefit our son well, but it's going to be down the road a bit, when he's a bit older and has had time to recover from the behaviors that were impressed upon him by a very stressed out dog that shouldn't have been placed into service to begin with. "Buddy" talks about it in his own way, and we know he is very traumatized by what happened and still trying to move on.
Now on to happier things! "Sophie" as she's choosing to be called this week, LOL, is being tested by the school district next week to determine if she should skip Kindergarten and go straight to first grade. Being a September baby in a state that cuts off birthdays for 5K at 9/1, she just missed the 5K cut off by 2 weeks this past school year. I could have challenged it then, but had reservations about her maturity for an all day program at the time the decision would need to be made. By the time September rolled around, I knew that she could have handled 5K just fine, but what was done was done. I had so much going on in our family and my own school journey that I just enrolled her in 4K at one of the district paid day care sights. That way I could pay for her to go to daycare for the hours outside of the half day 4 day a week structure of 4K. In the course of one school year "Sophie" grew leaps and bounds and came out of it reading at a second grade level, surprising all of her teachers because it was not something she even needed to work at. Reading just comes natural to her. She is right on target for writing skills, ahead in math, science and social studies work, coming in at 1st to 2nd grade level in all of those from my observations and that of the elementary teachers and principals that have observed her so far. The formal testing will be with a school psychologist who will test IQ, social skills, maturity and reading and math abilities so we can get the best idea of where she should go. I just want her placed in the best possible situation right from the start. She is bright, a leader and strong willed. I do not want her light to be hidden under a basket of boredom if she is not challenged appropriately. She also doesn't understand why her same aged (and sometimes older) classmates are not performing at the level she is, and I do not want to keep her the highest performing kid in the class and not challenged.
I've had all kinds of opinions, both solicited and unsolicited given to me about our choice to test for this. I've outright been told by others that I should just let it be and not do anything. My attitude on that is that I've had to do that for practically "Sophie's" whole childhood because of the issues that "Buddy" brings to the family and the emphasis that has always been on his needs. "Sophie" will be 6 in September and has had many of her needs shoved to the back burner for her whole early childhood experience. Yet, through that, she is still prevailing at such a high level, this is telling me it is her time to have a little attention on her to determine where the best place for her to be is! So, as it happens, my son has an IEP meeting on Weds at his school, with a different psychologist, just for an update, and I was able to arrange for the one that is going to be screening "Sophie" to do it at the same time, keeping things simple for me, meet at one building and handle both kids at once! What a state to be in though, two children on two completely different ends of the spectrum! I will do whatever it takes to help them both shine as brightly as they can. I'm at peace that whatever decision we make for our daughter as a result of this testing, it will be the right one. I'd rather take this extra step and know that we made the best decision for her now, and have her start out with her intended peer group, than to presume that she should just go to Kindergarten and then find she should really skip a grade later on in her elementary years and therefore split up friendships and peer groups and introduce all kinds of trauma! Stay tuned for the decision in a future post!
I will not go into any detail as I have been cautioned by legal counsel not to blog about the subject, or to blog with care if I do, I will simply state if you were unaware that we no longer have our beloved service dog that had been placed in our home with our son. I have chosen not to use my kids real names on this blog for a few reasons. My son has chosen to be called "Buddy" for his online name. Our daughter has come up with a variety of net nicknames...today it's "Sophie"...who knows what it will be tomorrow. Because public blogs are so searchable, I will not be using my children's real names in this blog. I won't even type the dogs name because I know that would cause it to show up on search engines and there are people out there that I don't even want reading my new blog. We are doing our best to let lawyers do what they do best and move on with our lives. If you have not heard the story and wish to, please contact me privately and I'll tell you what I can when I have a moment. If you were a donor to our cause, we thank you immensely for your support and when our attorney gives us the green light, you will be contacted about our status and intentions. We do feel a service dog would benefit our son well, but it's going to be down the road a bit, when he's a bit older and has had time to recover from the behaviors that were impressed upon him by a very stressed out dog that shouldn't have been placed into service to begin with. "Buddy" talks about it in his own way, and we know he is very traumatized by what happened and still trying to move on.
Now on to happier things! "Sophie" as she's choosing to be called this week, LOL, is being tested by the school district next week to determine if she should skip Kindergarten and go straight to first grade. Being a September baby in a state that cuts off birthdays for 5K at 9/1, she just missed the 5K cut off by 2 weeks this past school year. I could have challenged it then, but had reservations about her maturity for an all day program at the time the decision would need to be made. By the time September rolled around, I knew that she could have handled 5K just fine, but what was done was done. I had so much going on in our family and my own school journey that I just enrolled her in 4K at one of the district paid day care sights. That way I could pay for her to go to daycare for the hours outside of the half day 4 day a week structure of 4K. In the course of one school year "Sophie" grew leaps and bounds and came out of it reading at a second grade level, surprising all of her teachers because it was not something she even needed to work at. Reading just comes natural to her. She is right on target for writing skills, ahead in math, science and social studies work, coming in at 1st to 2nd grade level in all of those from my observations and that of the elementary teachers and principals that have observed her so far. The formal testing will be with a school psychologist who will test IQ, social skills, maturity and reading and math abilities so we can get the best idea of where she should go. I just want her placed in the best possible situation right from the start. She is bright, a leader and strong willed. I do not want her light to be hidden under a basket of boredom if she is not challenged appropriately. She also doesn't understand why her same aged (and sometimes older) classmates are not performing at the level she is, and I do not want to keep her the highest performing kid in the class and not challenged.
I've had all kinds of opinions, both solicited and unsolicited given to me about our choice to test for this. I've outright been told by others that I should just let it be and not do anything. My attitude on that is that I've had to do that for practically "Sophie's" whole childhood because of the issues that "Buddy" brings to the family and the emphasis that has always been on his needs. "Sophie" will be 6 in September and has had many of her needs shoved to the back burner for her whole early childhood experience. Yet, through that, she is still prevailing at such a high level, this is telling me it is her time to have a little attention on her to determine where the best place for her to be is! So, as it happens, my son has an IEP meeting on Weds at his school, with a different psychologist, just for an update, and I was able to arrange for the one that is going to be screening "Sophie" to do it at the same time, keeping things simple for me, meet at one building and handle both kids at once! What a state to be in though, two children on two completely different ends of the spectrum! I will do whatever it takes to help them both shine as brightly as they can. I'm at peace that whatever decision we make for our daughter as a result of this testing, it will be the right one. I'd rather take this extra step and know that we made the best decision for her now, and have her start out with her intended peer group, than to presume that she should just go to Kindergarten and then find she should really skip a grade later on in her elementary years and therefore split up friendships and peer groups and introduce all kinds of trauma! Stay tuned for the decision in a future post!
Coming soon to a blog reader near you!
I know many of you have missed "autism insanity and donuts" but changes in our lives necessitated the locking down of that blog, and so I am in the process of crafting a new one. Posts to come soon! Please visit the new site and "follow" it to see posts in your blog reader! Updates soon!
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