"If you want your child to get better just do this..."

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".