It's not a sprint...it's a marathon

Thank God our internet isn’t the most reliable because a few weeks ago, in a purely emotional state, I turned on my computer with the mindset to delete my entire blog.  I was feeling defeated, insecure, and wavering in my beliefs.  That’s how rough the week had been. 

It’s very difficult when you decide to use a treatment like biomedical, which is controversial, not understood, and foreign to the general population.  It’s even more difficult when even amongst the autistic community, the one you belong to because your child doesn’t “belong” to the typical community, isn’t supportive, understanding, or encouraging with your course of treatment.  It becomes overwhelming when all you’re trying to do it help your child and you’re seen as harming, non-accepting, and downright insulting those in the autistic community who believe there is nothing to “fix”. 

I think we should all encourage each other with whatever route we choose to take.  All we are all trying to do for our children is to help them achieve their fullest potential.  None of us would ever do something knowingly to harm our child.  I believe it’s so important to remain open minded when it comes to all different types of treatments for our kids.  I do want to “fix” things that limit him because of autism.  I don’t want to “fix” his sense of humor, his silliness, his outgoing lovable self, his love for electronics and comic books, his deep emotional connection with everyone around him.  I don’t think that by taking away behaviors such as pacing, walking in circles, vocal ticks, inability to focus his attention, hand flapping, food sensitivity, smell sensitivity that I will be altering who he is.  These are issues that limit who he is.  Maybe our route of treatment will work, maybe it won’t, but I need to try.

Since beginning our journey in biomedical treatment a little under a year ago, this is the 1^st time that I have felt doubt and questioned its validity.  Things have not been progressing as they did in the beginning and we’ve hit a wall, so to speak.  I’ve cried, I’ve prayed, and I’ve considered giving up, but in the end I reminded myself the wise words of his doctor.  “This is not a sprint…it’s a marathon”.  If I don’t stick with it and finish what we started, I’ll never know if it was really the answer and if it would have worked.  So, I’m sticking with it.  I’m giving it a chance to heal that which needs healing. 

I’m continuing with the supplements his body needs to support his system and repair damage done, we’ve started hyperbaric treatment (I’ll write a post about that soon), we continue on a very strict gluten/casein free diet, I’m still trying to reduce his carb and sugar intake (to control yeast) and increase his protein and vegetable intake, and I’m also learning more about using essential oils.  We’re back in occupational therapy after a few months off (insurance change) and I’m hoping to begin seeing those positive changes we initially saw when starting OT soon. 

Autism…now what?

What do you do after you receive the diagnosis that your child has autism?  This is not a simple answer nor is there a prescribed list of things you should do since each child's needs will be different.  For me though, I would recommend the following steps as a starting point.  This is not what I did, but rather what I wish I would have done.  The things I’m recommending I eventually got to, but I took a long route in getting there.  

 I had a few stumbling blocks along the way that slowed down my journey.  The first one was denial.  When I received his diagnosis I was in deep denial.  I didn’t stand still, but I didn’t dig deeper either.  Well, I dug, but in all the wrong places.  I spent countless night after countless night looking up what autism was from a conventional standard medical point of view.  That only led me further into my denial because if I believed them then this would be a dead-end diagnosis with no hope of recovery.   I told myself that as soon as his speech caught up no one would notice any difference between him and other children.  I told myself that he would simply outgrow it.  I desperately looked for stories of children who simply outgrew their autism. I only did what his school recommended, which was speech therapy and occupational therapy.  While that’s fine and a great beginning I should have search out the right kind therapy for a child with autism. 

 Not all children are the same and not all therapist are the same either!  Well, hindsight's 20/20.

Here’s my list of the steps I think every parent should take.

    1.   Find a speech therapist that specializes in children with autism.  I did a lot of home therapy, but I really find that receiving any therapy in a therapy facility affords much more opportunity for progress.  The resources are better and more abundant than what a therapist can bring to your home.  Also, there is a lot more on going training, supervision, and consistency in methods when a therapist works at a facility vs. one who is an independent contractor.  Again, solely my opinion.

2.  Secondly, and most importantly, is to find an occupational therapy facility that specializes in sensory integration.  This is SO important I can’t emphasize it enough!!  The type of therapy you receive from sensory integration OT is very very different!  This therapy has made the biggest impact on my son’s progress more than any other therapy.  I could only imagine where we’d be had he had it from an early age. 

    3.  ABA.  Sadly, we never did Applied Behavior Analysis.    I would try out every type of therapy you can until you find the right combination for your child.  While we are not in exclusive ABA therapy, our current therapist use ABA in both speech therapy and occupational therapy 

    

    4.  My next, and most important step, would be to find a DAN! Doctor.  This has been the single most important decision that my husband and I made and one that I believe will save our son from struggling with autism.  DAN! (Defeat Autism Now)  Doctors  follow a certain protocol when treating autism and believe that autism is a biomedical disorder that is caused by a combination of lowered immune response, external toxins from vaccines and other sources, problems with food allergies and digestive issues, and at times genetic predisposition.  Unlike traditional doctors, they do not view autism as a psychiatric disorder.   They work on healing the child internally to minimize or stop autistic behavior.  Treatment usually consists of nutritional supplements, gluten/casein free diet, extensive testing for allergies, deficiencies, and genetic vulnerabilities, treatment of yeast overgrowth which is very common in autistic children, and detoxification of heavy metals and toxins. 

 

My child is not the same child who I brought to our DAN! Doctor almost 6 months ago.  The changes have been noticed by everyone in his life.  The changes have been big!  We’re not there yet, but we’re on our way

I think that these are good places to begin when your child is diagnosed with autism.  It’s not easy in the beginning and it requires a lot of time, patience, planning, organizing, and sacrifices, but it does get easier.  It becomes second nature and you establish routines.  Many people become discouraged and even give up when they see the work it takes.  Don’t give up!  When I came home from my first DAN! Doctor appointment I was overwhelmed.  I spent all day and night making charts and graphs and plans in order to  give my son his supplements and other therapies.  Now, I prepare 3 baggies of supplements the night before, mark them breakfast, lunch, and dinner, and I’m done.  I drive him to all his therapies just as any other mom drives their kids to soccer practice or dance class. We do exercises and therapy at home just as any child would practice their hobby or sport at home.  When we go out to parties or restaurant I pack his lunch box with his gluten/casein free foods and no one has said boo to us.  I know that each child is different and that each child’s needs might be different, but I believe this is a good bouncing board to start from. 

I highly recommend reading the book “Healing our Autistic Children “by Dr. Julie A. Buckley.   It will change the way you see your child, autism, and treatment. 

The Autism Fog is Lifting

If you ask me about Alec's autistic symptoms I can give you a list of them.  I pay close attention to this list and look for any changes as we do his biomedical treatment.  I've noticed so many changes.  His eye contact is better, he's more focused, he's listening better, his language is exploding, he's using idioms in his language, he has conversations that are more in depth. These are changes I was watching out for, but recently I've noticed something unexpected.  It was unexpected because I never noticed it didn't exist.  It all started last week on the way to my parents house.  We were driving over the bridge that goes over the inter-coastal waterway.  He was staring out the window and then says, "Wow, look at all those boats".  At this point I didn't think much about it, but as the week continued he kept pointing things out to me and to his little sister.  I thought about it, usually when he stares out a window or looks around his environment he is "inside" his head...in his own world.  Now he was noticing the world around him.  When we got home from grandmas house we were playing in his room, a room that we redecorated months ago in an outer space theme, and he says "My outer space room is really cool!".  He then begins to look at specific decorations and talking to me about them.  When he had first seen his room after my husband and I had redecorated it he said "Wow, I like it" and that was the end.  He never mentioned his room again.  I think he just didn't notice his room.  It is truly like a fog has lifted from him and he can see his world clearly.  I can't even begin to imagine what that must be like, but I'm so happy that he's finally getting to enjoy all the little things that we sometimes take for granted.