The One Where I Didn't Cry

Today marked the day that I didn't cry at an evaluation review appointment. That's a milestone.

We had decided to do full neuropsychological testing to try and figure out why our son was still having some struggles at school and it was with a massive pile of nerves and anxiety that I went along today to review the findings with his psychologist.

What if she felt that autism did still fit?

What if he had massive cognitive impairments?

What if he had some other personality disorder, or something I totally wasn't expecting?

And...

It was helpful. Really helpful.

Our son has ADHD. He's struggled with attention and hyperactivity since he was little. It's the thing that's 'left over' from the autism. It's better than it was, but then of course he's older - more aware, more able to manage himself. But, it's there. He struggles with both attention and hyperactivity, as well as a little impulsivity too.

He also has dyslexia, which was a surprise, but, we were starting to have suspicions - he was still having letter reversals, cannot spell to save his life and cannot sound out words. His sight words are great though. Because that's how he's learned to read. By memory and recognition, not decoding.

Throw in some dysgraphia (yep - awful handwriting), some anxiety (well, who wouldn't be anxious when you can't pay attention and you are struggling to read) and yet more visual processing problems and you have the answer.

Here's where I was REALLY surprised though. A couple of nights ago his psychologist emailed me to clarify the situation and timing on his folate issues and Lyme Disease. This could've been for 2 reasons. Either she was simply writing the medical history for the preamble of the report, or, she had started to put things together that we also had. That they could be the root of the problem.

Today I got my answer. Yep, who would've ever thought it. She thinks that most of his symptoms could be from Lyme. She also thinks his developmental regression at 18 months was likely a result of impaired folate metabolism. I really think we found the Holy Grail of psychologists. I am in shock.

She doesn't think it was 'true autism', but another disorder that was presenting in such a way that a developmental pediatrician (who "didn't know what he was seeing" - direct quote) felt he met criteria for autism. So - did he ever have it? He met the diagnostic criteria though, so, he did, by that definition.
My question though? HOW MANY OTHER CHILDREN DON'T HAVE AUTISM? How many other children get therapy instead of folate supplements? That is something that should make everyone cry frankly. It's a criminal neglect of medical duty. And it's really fecking expensive. Our insurance paid over $100,000 for ABA therapy and would've saved over $99,000 of that amount if they would've just paid for his methyl folate, which we did, out of pocket.

Some other highlights, and I'm only going to share a few good ones for now.

- Our son is a storyteller - functioning at anything between a 6th and 9th grade level in these areas of sentence and essay composition and oral reading fluency. He is in 4th grade. Of note - his spelling is at a 2nd grade level. Quite a difference.

- In math - we've been taking him to Mathnasium to sure up his foundational skills as well as give him a little help in an area he had previously been struggling. Between addition, subtraction and multiplication subtests on the Wechsler Scale, his lowest grade equivalency was almost 6th grade, his highest was almost 10th grade. Holy moly.

Here's where we will struggle - he tests average. His uncorrected (ie performance) IQ is right in the middle of the bell curve - around 90. However - the main point of this testing was to figure out if his roadblocks are really affecting his performance, and, yes, indeed, they are, to the tune of over 20 points. His average score ups to an above average. So, there is a discrepancy in his actual achievement in some areas, when compared to his actual intelligence. Whether it is enough for school to help him out beyond accommodations remains to be seen, but, it's a start. We will definitely discuss our findings with them soon and what we can do for him within the school setting, because, it's clear, that right now - he is NOT getting an appropriate education, at least where his language arts are concerned.

And - it's DEFINITELY not autism. It's ADHD.

Our next steps -

- Try and find a tutor or online program to help with his reading skills - something specific to children with dyslexia.
- Continue with his cognitive behavioural therapy and neurofeedback.
- Look into some music lessons again - probably not violin again - but something, since music stimulates the same regions of the brain as those in which he has deficits. He mentioned the drums. I'll leave that there. Yikes.
- Work with school to support his reading instruction with qualified staff.
- Relook at vision therapy - he's due for a check anyway.

The big one?

FIGHT LYME. Time for a new herbal attack I think.... I do love an experiment.

Apologies

So, this article has been recently making the rounds on social media, and, well, I just love it.

It is such a true observation of how so many of us behave. We apologize for everything.

As a native Brit, it’s even worse. I have caught myself apologizing for opening a door for someone. We are always apologizing for something – maybe it’s colonialism, or the fact that we aren’t generally warm and fuzzy people, or even that people can’t understand the version of English that we speak. That being, um, English.

But – this strikes deeper for me personally, even beyond my cultural foundation.

I have spent the past 10 years, since my fabulous little one just celebrated double digits yesterday, apologizing. For him. For his behavior. For him not understanding an explanation. For him not being able to pay attention in class. For him having food allergies. Basically for all of the things that he can’t do a thing about. Things that are not his fault. He would change it in a heartbeat – so would I. But, they are a work in progress. 

Here’s an example –

“I’m so sorry (he) was a distraction for the other children”. What does this say? That I have maybe validated the person’s feelings of annoyance and irritation at him? 

What if I would have said “thank you so much for your patience with him, he had a great time”. This is much better. It actually expresses the gratitude instead of trying to minimize the disruption. It makes people feel valued instead of put out.

So, today – no more. I will not start with an apology, unless that thing was intentional. Our son has made so much progress and continues to do so, from his autism diagnosis at 2, to his recovery at 9. Why should I apologize for that? I am thankful for the kindness and patience shown to him and I appreciate it more than I can express, but I can at least try.

Then turning this back towards myself. I routinely apologize for myself. For my parenting. For my choices. For my feelings. For my lack of feelings. For my need for boundaries. But – when I think about it, I am not sorry. I am glad we made the parenting choices we did – they worked. They were successful in recovering our son from autism.

Relationships are a struggle sometimes, both family and friends. I have friends that disagree with many of my opinions, which really is fine! We are each entitled to our own opinion, but that’s what they are – opinions, not facts. Opinions shaped by experiences, which of course are different. Where true friendship lies is where the opinions can be vastly different, but the discussion interested and honest, and the friendship endures. In those true friendships, I don’t apologize for my opinions and have never felt the need to.

Where I have struggled in the past is in those relationships that are not formed based on genuine growth together and respect, but on assumption of familiarity. I am not someone to give respect where it hasn’t been earned. And you know what? That’s ok. I shouldn’t apologize for requiring my affection and respect to be earned. But I can be thankful when it is.

The biggest thing we can all do is to own ourselves and our needs. Be honest as to how you feel. Do not apologize for those feelings, but, appreciate it all the more when people take the time to understand.  

New Facebook Page!

So, today marks a new milestone. A Facebook page for the blog!

For several years I ran the AMFAS (American Military Families Autism Support) FB page and I loved the interaction there, but, after our son lost his diagnosis and we retired as a military family, it felt like the right time to hand it over to those who would serve the group better.

There are so many aspects to our journey so far.

Autism and recovery from autism.
Lyme disease.
Folate metabolism and autoantibodies.
Health.
Food.
Food allergies.
Lifestyle.
Military life and moving.
Education.
Special education.
Sports.
Hobbies.
Therapies - of every type under the sun.
Sanity - primarily the preservation of mine.
Marriage - how to keep it together, strengthen it, be a true team.
Friends.

That's probably just a snippet. So many things to juggle and always something new coming down the pipeline. Much though I would love to think I know everything, I don't. Not even a fraction of what I wish I did. So, the page is a great idea to bring together people and information and great discussion.

As I'm sure many people already realise, I am not someone to sit idly by and accept things, so I'm always looking for answers. For a better way, a calmer place, for more knowledge. Let this be the start.

One Step Forward, One Step Back and Onwards We Go.

Back and forth, back and forth - that's how life has felt for a while, but, just when you feel like you have some stuff figured out, something else rears its head.

Since the summer, we've had a sense of relief. Our son officially lost his autism diagnosis - something we have worked on for over 7 years. We decided though, to start working with a psychologist and therapist to work on some cognitive behavioural things to try and help him get a handle on some remaining issues.

We've known since he was very young that he has attention and hyperactivity issues. He never sits still and has the hardest time paying attention to anything that is not in his sphere of interest.

Putting him in hockey was the best thing we ever did - he loves it and it gives him the most amazing input and discipline - it's honestly the best therapy I can point to.

But - he is struggling in school. He's struggled to learn to read - not helped by his inability to track with his eyes. He's struggled to spell. Struggled to pay attention to classroom instruction. He also struggles with confidence and is starting to show signs of depression because he's acutely aware of how much he's struggling with all the other stuff. And my heart aches so badly for him. He's never had a moment of peace it seems. There is always a problem, always a therapy, always a mountain to climb.

After the worst testing experience a few years ago, I swore off all types of testing - it was that bad. Now though, we know we have to identify the problems he's having, so we are in the middle of the most comprehensive testing we've ever done. It's looking at everything. Attention, visual processing, executive function, anxiety and depression, memory, etc etc. You name it, we're testing around it.
After losing such a major label, I am in no hurry to burden him with any more, but, after losing his IEP this Spring, we needed to figure out if he truly doesn't need it, or, if their testing was just not comprehensive and thorough enough to identify why he is still struggling.

I talked with kiddo the other night and he explained how he's feeling so clearly - and in minecraft terms no less. He explained that it feels like he's in a maze - there are walls everywhere and he can''t find a way around them, nor can he break through them. I explained what the testing we are doing right now is trying to figure out - which walls we can break through, and which ones we are going to have to find a way around, climb over, or literally chip away at, but there might be many walls, or there might be a few, and some may be wood (easy to break through), or some might be obsidian (need to chip away at or go around somehow). He said he would probably need a diamond pickaxe.
Here's the odd thing though. We've never really discussed "autism" with him. We never felt the need to - we just used to put things in terms of challenges - how some things were harder for him, or that he did some things later and we needed to help him fill in those gaps. But - as we were discussing this, he said that he had a diamond pickaxe when he was little, but he thinks he wore it out and it's time to make a new one. Insightful little one.

We know he is going to show attention problems, but the rest is still a mystery right now, although, I would not be a bit surprised if he also identifies as having dyslexia too, at least if the tester's hunch is right after 2/3 of the testing.
Oh that we might figure this out and get him back on the track of control and progress....

And I console myself - at least he's a nice kid, not an arsehole. After all, there's no therapy for that. :)

Where Are You In Your Autism Journey?

Today, I had an acquaintance contact me and another mutual friend. It was to introduce another parent who had a child with autism, in the hope that we might be able to offer some wisdom etc...
My other friend did a solely therapeutic route - her son is doing very well, but still has a diagnosis (barely). Her son is engaged, funny and bright. She has done a wonderful job in both meeting her son's needs and advocating for him and I respect her immensely.
I on the other hand, took a biomedical and therapy route. It worked well for us, but there is no guarantee that every child would do as well using an identical protocol. Our son had specific needs, which we tried our best to meet.

Here's one thing though that helped enormously. I met and bonded with some girls who were at the same stage I was. We all had preschool-aged children, all of which had been diagnosed on the autism spectrum. I needed that. They needed that. We are still good friends. Our children are all doing well, regardless of which approach we took - because we all took the approach that fit our child best. One of these girls is my mutual friend referred to above.

The new parent we were introduced to is not at the same stage we are and whilst I like to share that vision for hope for her child, I am just not in that place anymore. I cannot hand hold. I cannot guide her through, nor do I think that would be the best thing for her.

Autism is a journey. You learn and grow with your child as you both travel it. From a medical standpoint, it's like peeling an onion. Things show at different stages, and as some things are addressed, others become apparent. If you try to fix everything at once, it just doesn't work - you don't know what's working and what isn't.

From where we are now, the best advice I can offer is to read and find a buddy (or two). It sounds a little mean maybe, but, it's the starting point. We all need friends. We need to know we're not alone in something, especially something as big as autism. But, we must travel that journey ourselves, someone else cannot do it for you.

The One Where He MADE The Team!!!

So, remember this time last year, when our little guy didn't make the U8 hockey team he was hoping to?

Well, fast forward to this past weekend, when, yet again, it was tryout time. This year he's moving up to the U10 division.

And...

He made it! He did even better than he was hoping to. He was hoping to make a travel team, and his organization has 3 levels, A, B and C. He made the B team!

He was the only kiddo who played at the intermediate level last year to do so.

We are so so proud of him. He was so disappointed last year, but, rallied well. He played and practiced so hard, constantly looking for improvement.

As a parent, I am thrilled, not just because he's made great improvements, but, because of all the reasons we quoted last year, and especially these two.

- He didn't let a setback turn him away from something he loved. He worked harder.
- He learned that amazingly motivating lesson of hard work paying off.

This year, he's also on a team with some of his friends, and other nice kids in the program.

Yay! One proud mum.

"Definitely Not Autism", Neurofeedback and The Listening Program

A few months ago, our son 'lost' his diagnosis, that is to say that he no longer meets the diagnostic criteria for autism spectrum disorder. I'm not sure why, but after hearing so many heartbreaking things over the years, even though I believed it, you always want to hear someone else say this. As if somehow it might be wrong, and he might still have it.

Anyway, part of the recommendations from the first psychologist we saw was to look into neurofeedback as a way of 'cleaning things up', and he recommended another local psychologist that does this. So, after finishing up a final run of "The Listening Program" (which I will discuss further down), I made an appointment.

Yay! Happy to report that she also doesn't see any way that he meets the criteria for diagnosis with ASD. So, that's good. He is indeed recovered. Officially.

There are still a few areas that he has some differences, or quirks though, which is where we will go next.

Onto neurofeedback. Our new provider couples it with cognitive behavioural therapy and other various therapeutic activities and what a fascinating approach it is.
For the first time we see brain activity in our son. He is lower in areas he should be higher, and higher in areas he should be lower, which contributes to hyperactivity and impulse control, and anxiety issues. I am excited to see where this can help him.

I will definitely update as we go on this.

Now, "The Listening Program". We've done this several times over the years, since our son has been small. I can now, with certainty say that it hasn't helped at all. I was lucky enough to have been given a copy of the discs by a friend years ago, and I've done the program several times to check if it was effective. We never saw anything with our son when he was smaller, so I held off doing it again until he was a little older, in the hope that when he was older, he might benefit more if he were mindfully listening to it. And no. Nothing. I have heard (although don't directly know) people say it has helped, but, not our son. I will be passing on our discs to someone else in the hope that it might help their child.

What Are Your Goals?

Our goal was always to recover our son, and my definition of "recovery" is that he would no longer qualify for an autism diagnosis. We have achieved that goal. Now what?!

He still has areas that need work. Just because he is considered 'neurotypical', that is, he doesn't meet criteria for an ASD diagnosis, it doesn't mean that he has no barriers to learning, attention and focus. They remain problem areas. It may even be that he qualifies for some sort of ADHD diagnosis, although, I will probably ask his psychologist to hold off on applying any form of diagnosis until we have completed some neurofeedback, as recommended, as well as finishing his scheduled vision therapy.

It's been an interesting few weeks. I am having to be very careful in what I read, and what I respond to, because, I am elated as to our result in this autism experience. I know that, for our son at least, recovery was possible. If I had listened to our diagnosing developmental pediatrician all those years ago, it wouldn't have happened.

Does that mean that recovery is possible for all children? No. I don't think it is. I don't want to be a wet blanket, but, I think that kids who present with symptoms that can result in an autism diagnosis are all so different, and those differences have led me to the conclusion that there are probably multiple conditions that can lead to the diagnosis.

Are some genetic?
Yes - probably. You see families with multiple children with autism in them, especially where there are multiple generations of Aspergers. There is also fragile x to consider. A new study was recently published detailing some of the contributing genetic markers to autism, or what they think are.

Are some from vaccination injuries?
Yes - probably. Courts have ruled this around the world, and with more data being published all the time as to the immune response and social interaction, frankly, unless you were utterly unaware of what a vaccine is designed to do, then this is the most obvious probably in the world. If a vaccine can stimulate the immune system and can damage the brain in some children, and the immune system can affect the brain, which then can affect social interaction then it's a very big YES. For some children.

Can infections and viruses cause regression into autism?
Yes - probably. See above. If a vaccine can do it, so an any other insult to the immune system.

Is recovery really possible?
Yes. We are proof of it.

But - is it possible for all?
No. Why not? Because, in some cases, like ours, it's possible to reverse the biological conditions that set up our son's brain to mis-wire. We normalized his biology as much as we were able, calmed the immune and mitochondrial storm that was happening, then used various therapies to re-wire neural connections and rebuild the developmental skills he missed whilst opening and closing doors for hours on end.
Some kids are really sick and it's not always easy to heal their bodies past the point of damage. Sometimes they may have seizures, which continue to damage the brain, and thus wreck havoc on progress being achieved through therapies. Some children constantly gain skills and lose them.

Does this mean that trying to recover a child is not worth the effort? Absolutely not.
You may just have one like ours - that it can be done. And if you don't? You still have a child that is yours - and more precious than anything in the world. If our son hadn't have lost his diagnosis, it would've changed nothing for us - he is still the most amazing child to us - loved, valued and has a ton to contribute to the world.

I get sad when I read comments about recovery from other parents saying that they don't believe it, or  their doctor told them it's not possible. Always shoot for the stars, because, even if you don't get there, you may reach the moon.

Thoughts on Recovery

Well, I promised I would write more about this when I had collected my thoughts. I can't say they're totally together yet, but, I wanted to at least try and put down in words some of what I'm feeling, post re-evaluation appointment.

I honestly wasn't expecting our son to technically lose his diagnosis at this first appointment. I thought the psychologist would want to do more testing and assessment, but, I could tell from when we entered the room that it was set up in a specific way to observe my son.
There were various 'toys' (3D maze balls, pin boards etc), so that he could see his unscripted interaction.
We explained where we were - that basically, our son had received  his diagnosis at the age of 2, and that he was now at a point where he no longer qualified for special education services, he was skilling/testing out of speech and occupational therapy eligibility and that numerous professionals had told us that they just weren't seeing autism in their interactions and observations of him. That's not to say they didn't see other issues - some remaining attentional and anxiety issues, but, they just didn't see autism. Given this, we wanted to see if this really was the case - does he meet diagnostic criteria for autism, or not?

After our appointment, where we discussed various issues, experiences, interventions, and where the psychologist himself talked with him, we asked what he thought.

We were pretty surprised with the answer. Our son, in his opinion, didn't meet ANY criteria for autism. He said that he could see there were still a couple of little things that needed some 'tidying up', such as attention and focus, but, those could be addressed with neurofeedback - a therapy he recommended we look into.

So - we have recovery. Our son no longer meets diagnostic criteria for autism.

There are those who will insist that autism is lifelong, and those, like myself that view it based on its actual diagnostic criteria, in much the same was as other DSM diagnosed conditions, such as depression. The absence of the symptoms means the disorder is not present. And that's where we are.

I no longer have a child with autism.

I am no longer an 'autism parent'.

So, where do we go from here? Well, this, for me, feels like we get a do-over. We need to be mindful of the demands we put on our son, especially with respect to our expectations. He may no longer have autism, but, he has still walked a very long and stressful journey.
But, and this is a large but, he no longer has that label. He is no longer a special needs child. He no longer has a disability. He gets to live a normal life from here on. He is about to do his last speech and occupational therapy appointments next week, then, vision therapy will be the only therapy we will have on our schedule, and that should be wrapping up in the next few months.

I want to explore a couple of other things to help him with focus and concentration.

1 - We restarted The Listening Program. I've done it before with him, years ago, and honestly, it didn't really help that much. I wonder though if he was just too young. Now, we are doing it again, to give it one final try. We have 5 weeks left and will then assess if it has been of any benefit.

2 - We want to try neurofeedback. I am hopeful it can help with optimization, as recommended by his psychologist.

3 - We want to add in general things to try and help with concentration, attention and focus. I am not sure whether this means we try BrainBeat first (based on interactive metronome) or BrainBuilder (software supposed to help). We will do at least one, and maybe both of these. To come so far and not try to finish the job properly seems foolish.

What else?

We will continue to see his holistic/functional medicine doctor.
We can add in some fun sports or activities now that we aren't at therapy twice a week (such as swimming etc).
He could do an after school club such as Landsharks now that he doesn't have those after school appointments.
I want to travel more.

What about me?
Well, for the past 7 years, I've had to parent a very specific way, and I don't anticipate that changing too much, but, now the focus will move more actively towards encouraging him to spread his wings and be more responsible for himself. Which means that I need to be more hands off. This is a big change. For a parenting experience such as ours, I honestly feel like I have been on edge for the entire time. I feel like I have aged 20 years and it's time to claim some of that back. I need to take better care of myself, both physically and emotionally. But, that will take time.

The past 7 years has given me a very low tolerance for nonsense. I don't care if someone disapproves of my parenting or lifestyle - my son's diet, my discontinuation of regular pediatrics in favour of functional medicine, my methods for discipline, my utter lack of any belief in any religion. I feel that the results speak for themselves. I just feel like I've been through enough to even care what someone thinks of my choices, and am happy to cut off unhealthy relationships that cause more stress than bring joy. I answer to myself and my family - not to outside influences that really haven't been a part of our struggles or journey.

We're free. The world is our oyster!

It's Official. We Have Recovery.

I'm still processing the information as of right now, and when I have fully formulated everything in my head I will write a longer post.

But - here's the quick version.

Our son does not meet criteria for an autism diagnosis under DSM 5. In fact, he met NO criteria.

I'm in shock. In the best way possible.

Re-Evaluation Jitters

We are finally at the point, just over 7 years post-diagnosis where we feel the time is right for a review of that diagnosis.
Our son has made so much progress over the years - he's grown in so many ways and so many of those things that firmly placed him on the autism spectrum are no longer an issue.

And that's primarily why we are pursuing a new evaluation.

I won't be coy about it though. I don't like psychologists, or developmental pediatricians, or the likes. I find them rude and condescending. I find their bedside manner lacking. I even question some of their worth in the medical field to be honest. This whole process has sent me into an anxious tailspin.

The appt we have this week starts the process. I am thankful they didn't give me a stack of paperwork to complete, where I am forced (for what seems like the 500th time) to relive all of the trauma of parenting a child who was diagnosed with classic autism at 2 years of age. To have to write what he didn't do when he should have. To list the things he still struggles with. To list areas of concern.

At least I am thankful for the recommendation we've received for this provider. We've heard great reports of his practice from multiple families. He's apparently 'biomed-friendly', which is a very big deal to me. I credit our biomedical interventions for returning our son to the state of health where his therapeutic interventions have been able to have an effect.

Why are we re-evaluating though? Isn't autism a 'lifelong neurological condition'? Well, that's the thing. Right now our son has that diagnosis, and whilst I don't dispute there are still some differences, we've been told by many people that they don't feel that autism is the right descriptor for him. And we agree with them.

He struggles with attention and we see some anxiety. We also still see some expressive/receptive language delay, especially with complex instructions, but, our speech and language testing places him on the bell curve in these areas. Academically, honestly, I can say he's not the sharpest tool in the box. He is average. He is better in some areas than others. We are also still working on his visual skills, because, his eyes and their inability to get along and play nicely together have made the whole process of learning to read a struggle, but, we are seeing progress in this area too, and, again, he's on the bell curve.

So, whilst he might not be 'neurotypical', (whatever that means), we are not sure he technically qualifies for an autism diagnosis anymore. If he does, so be it. He will be re-assessed to DSM 5, the newer standard, so it will be good to at least get an update as to where he is. If he no longer meets criteria, then, it's more appropriate to alter his diagnosis to something that is accurate and can help him and our understanding of appropriate interventions.

Just trying to stay calm for whatever we hear...

Vaxxed!

Well, after the DeNiro issue and TriBeca etc etc, Vaxxed has managed to get showings around the country.
I for one am going to go and see it.

As a scientist, the thought of research fraud (which is what it is when you omit data to hide a result you don't like) is unacceptable.
When it involves children's health, it's even worse.
As a parent to a child with autism, that regressed in development, it's blood-chilling.

So, this mama bear scientist is going to Denver next week to see it. And I know I'll need tissues.

Want info?

https://www.landmarktheatres.com/denver/esquire-theatre/film-info/vaxxed-from-cover-up-to-catastrophe

It Really Is A Light (And Not A Train)!

Our son's IEP triennial meeting is on Thursday, and we have never done a pre-meeting before. We have always had very straightforward meetings and I always felt confident that our team had my son's best interests at heart. They truly love my little guy at his school and he has progressed steadily with their help. So, it kind of threw me off yesterday when I got an email from our IEP team lead saying they wanted a pre-meeting.

So, today I went in for the afore-mentioned meeting and the team basically wanted to not spring on me on Thursday that according to their testing, my little one (even though he's getting taller each minute it seems) no longer qualifies for an IEP.

What?!!

Basically, although there are some differences from a psychological standpoint, such as attention, impulsivity and  anxiety, none of these are considered debilitating enough that he qualifies for special education services. So, his IEP will not be renewed at our meeting on Thursday, instead, he will transition to a 504 plan. This will still provide additional help for him in areas of academic weakness, through the Response to Intervention system and it will still provide social services via the school counselor, but, technically, from a school performance standpoint, he is 'within range' in the majority of areas of his peers.
There will be monitoring during and after the transition, but, it looks as though his time under the special education umbrella is at an end.

Add to this little meeting of joy the fact that the school district autism specialist doesn't think DSM criteria for ASD at all describes him, so, maybe, just maybe, it's time to look at a re-evaluation. We are 7 years into this journey, which at times has been hell, and I cannot believe we actually could be almost at the end of the big stuff. The funny thing was that she suggested that maybe he was incorrectly diagnosed at such a young age. I corrected her on that one - he met criteria and then some. His diagnosis may have been heartbreaking, but he met the criteria, to the point where the developmental pediatrician didn't even need to finish the assessments. I think we are finally at the point where we can call a spade a spade and refer to 'recovery'.

I am so thankful for how far he has come. Everyday he just amazes me. Here's to continued hard work and even more progress.

Updates!

One of the brand new pendants in my little store!

Well, it's been a while since I updated this blog. What's been going on? Lots. Always lots!

How is our little guy doing? Well - really well! We managed to get through his hockey season, where, he didn't make the team. He had fun. He worked hard. He's excited to move up to the U10 Division (Squirts) in the fall. Who knows whether he will make a team, but, he wants it and is also wanting to do the summer program they run at his hockey club, so we're obliging and signing him up.
He continues to grow and develop.

Celebrating a goal like his hero - Patrick Kane

One big thing we're tackling at the moment is his vision. He sees 20/20. In each eye. And together. However - those gorgeous peepers of his don't work together as a team. They are totally independent, which means he has really poor depth perception, no ability to see 3D movies (I know - a vital life skill) and his tracking for reading was terrible. It totally explains some of the issues with reading speed and accuracy he was encountering. He was also experiencing intermittent exotropia - where one of his eyes would fly off to the outside to 'reset' itself.
What's the fix for this? Vision Therapy. It's expensive. It's not covered by insurance. Surprise surprise. We're doing it anyway. He needs this and badly. After a few months we're already seeing gains and his eyes are tracking so much better than they were. He is able to follow along reading passages and pages. It's exciting to see the progress in a few short months. At least vision therapy isn't a lifelong or even semi-long term thing. It's a few months of appointments weekly and limited homework. It's doable.
Poor visual skills can manifest in difficulty reading and paying attention, hardly surprising when the poor kid's brain is frazzled from working two independent eyes instead of a unit of two.

In other news, he finally tested in the 'normal' range in a speech evaluation. This doesn't mean that his speech and language skills are the same as his peers, but it does mean that we are making great progress. Now we concentrate on those subtle things - how to read people and their language, how to improve conversation. We've reduced speech hours from twice to once per week, and picked up a tennis lesson instead. So nice to finally be reducing therapy hours and increasing fun things!

We've also reduced occupational therapy to once per week - concentrating on visual exercises to compliment the vision therapy, as well as continuing to work on handwriting.

Biologically and medically, things seem stable. Aside from an allergic reaction (that of course skin testing couldn't replicate) to an antibiotic, all has been 'normal'. We continue to supplement where he has problems (low zinc, vit D, impaired folate metabolism), but, he is growing like a weed and always looks healthy.

So, that's where we are!! We have a 9 year old that is thriving. Autism Awareness Day is a day of reflection for us - where we are, where we've been. And we've been to dark places, but, there IS light at the end of the tunnel. Maybe we're already out. I'm not sure.

Every child is different and should be accepted for that. Some have diagnoses, some don't, some have challenges that are bigger than those other children and families experience. But - no child is 'perfect'. No child will have the perfect charmed life.

I try to see that what we've overcome as a family has made us stronger, more willing to consider alternative explanations, more savvy to the world and more knowledgeable about health and wellness.

So, whether you consider today to be Autism Awareness Day, Autism Action Day, or Autism is an Arse Day, be kind to yourself and look at the positives. Make it the day that you decide to change something - whether it be a therapist that isn't a great fit, or seeing a MAPS doctor, or just trying something new - go for a family hike, eat out together, give extra cuddles and watch a movie.

Use it as a day to not celebrate a DSM diagnosis, but your family and the love you have for each other.

The One Where He Didn't Make The Team

Yes, that has been the big drama of the week. My son didn't make the advanced hockey team he wanted to. Big deal right? #firstworldproblems and all.....

He worked his tail off all summer, I could see the strain on his face as he battled against himself when he couldn't pay attention, or stand still, or show that focus that he needs so badly. He didn't make the team. He's as good as so many other kids who did. Better than others. Yet, he didn't make it.

He was upset. We were upset. I could blame the program for not working on the foundational skills that were some of the reason he came up a little short, but, at the end of the day, my son just doesn't "want" it as badly as the other kids, or rather, he can't keep his squirly self focussed long enough to show others he does. And that is where I feel that he just missed it.

We're trying to focus on the positives of this situation though. Want to hear what great lessons one can learn from not making the team?

- It will help him decide if he wants it enough to keep trying. To keep going, learning, skating. If he wants it, he will develop even more determination. He might even battle and win with his inattention.

- If anyone had told us at the age of 2 when he was diagnosed with classic autism at a moderate to severe level that he would be in with a hope in hell of making an advanced age 8 hockey team, we wouldn't have believed it. He has come SO far. We are incredibly proud, and sometimes when your kid makes so much progress, you can't help glimpse at life as maybe it could be. Those glimpses keep us trucking on.

- He will get to play this season anyway, and even better, with a couple of kids who are his friends from last season. They are fabulous kids who genuinely love him, with parents we like. He will have a blast with them. It will also be a lower pressure environment for him, so that maybe we can nurture that motivation that has been lacking, sadly, I think from the years of ABA he's had.

- We get to not have to play 'Keeping up with the Jones' ' this season, with some of the other hockey parents that are a lot to deal with. They are hardcore. They are intense. They are determined their children will make the NHL, or at the least, they will play college hockey. Come hell or high water. That is a relief for us. We are just not that kind of people. Sometimes I wish we were able to be, but, autism comes into your life and pretty much takes that away. Yes, it makes me sad, but at the same time, achievements that others take for granted - a meaningful conversation, your child finally connecting, those become so clear and grounding. And important. So important.

- We are going to work on his skating skills as a foundation, but in a different environment, where he can learn and progress in a much slower paced setting - more individual, more attention for him.

-  We've had our setback. It's OK. We all lived. Now, if he decides he wants to play Squirts (U10) and doesn't make a team, it won't be the end of the world. He will have those tools to accept and try something else, or to try and keep trying until he succeeds, or doesn't and either way, he'll be ok.


Life goes on and it's just a game. And sometimes the lessons you learn from not making the team are as important as the ones you do by doing so. Now he gets to play anyway, for fun. Isn't that the way life should be? Play for the love of the game.

Finding A Place

Having a child with autism grants you a place in that community. There are many different camps within the autism community and many different personalities within each camp. We have been firmly in the recovery camp, that is, I believe there is a biological basis for the symptoms collectively described as ‘autism’. I further believe that those symptoms are a reflection of a body that has lost the balance of health – where there are odd immunological responses to what should be benign substances. I don’t know what causes this. I also think that the cause can be different for each child. This, in my mind at least, is one possible explanation for why some children, supposedly with the same disorder, present so differently. Autism is a very loose diagnosis once you realize what is missing from the diagnostic criteria and it has become more so with the adoption of the DSM 5.

Anyway, once you’ve chosen your camp, what then? Well, in our case, we have worked towards recovery and we’re almost there.

Our son doesn’t have –

Repetitive behaviours

Insistence on sameness or routine

Sensory issues

‘Meltdowns’

Avoidance of social interaction

He still struggles with the finer points of verbal interactions and he does love to talk on the subject of his choosing, but, this, I have no doubt will also improve. He demonstrated great use of sarcasm the other day with my sister. He has friends and loves to be with other children. He doesn’t care if our schedule deviates from what he was told. All of those core autism symptoms are pretty much gone.

We are thrilled with his progress. More than thrilled. But, it puts us in no man’s land.

I cannot identify with families with children with autism anymore. Those families who are still dealing with so much. They have sensory issues, meltdowns, behaviours that we’ve never seen. I find myself getting further and further away from it.

I feel like a fraud in these groups. It feels wrong. I feel out of place.

Being an autism parent though and having gone through what we have, I also don’t fit in the typical camp. Our son does have differences. My parenting experience has been so vastly different to those parents that I feel like a fish out of water. My experience on this journey has taught me so much, but at the same time, I cannot unlearn what I have acquired. I can no longer trust our government scientists. I will never be able to vaccinate my son as if none of this had ever happened. I cannot go back. Nor can I ever switch off my ridiculously alert state. I am constantly on watch watching for children who are unkind or bullying – those that notice that our son still has some differences and move to exploit them. Sadly, there are some children who are so politically adept even at a young age that they will.

Visiting with friends from my college days has reaffirmed how different we all are. Some of them are so blissfully ignorant of anything we have experienced. Not that I would wish any of this on them for a second, but, I rather wish I could acquire a memory charm and forget it all. I wish I didn’t even have to consider how the pharmaceutical industry is a nasty, toxic lobbying giant buying off our elected representatives to mandate us buying their products. I wish I could go back to that camp where I didn’t have any reason to question their ‘life-saving’ role in medicine.

When is the government going to start acknowledging that these children are actually sick? When are they going to do some real research into biological mechanisms for both development and reversal of autism? When are they going to realize that caring for these children is going to break their precious budgets.

I also am incredulous at the so called neurodiversity movement. Frankly, the self-advocates out there only represent themselves. They are happy (although in so many cases barely functional on a social level) and good for them. But, to represent that no-one should have access to therapy because they don’t want it is absurd and of course indicative of a complete inability to see another perspective, a core feature of Aspergers. So, not surprising really.

Anyway, back to our strange reality. We are lucky to have friends with children who have some quirks themselves, not enough to qualify for a diagnosis, but, this experience has awoken these parents to understand our situation in a way that autism parents who stick to the book for their approach or those with neurotypical children can never do.

But, this situation is a lonely one. We have friends and family with neurotypical children that will never understand the heartbreak we have suffered, the worry we’ve endured, the work we’ve done. There are many of our son’s friend’s parents who simply don’t know about his history – nor will we disclose it until we’re absolutely sure it won’t affect their relationship with him or us. We also have friends with children who are so severely affected that it feels wrong for us to claim the same diagnosis. Our children are so different. At least though, we have an empathy for their experience that those with unaffected children simply don’t have. Not because they’re callous, but because they just haven’t experienced it. They’ve never had to try and comfort a friend who has so many things on their plate that they just can’t face the world. They’ve never had to try and find the words to express their sorrow when a friend loses a child. They never feel the dread of hearing about another wandering death in the autism community, knowing that there are at least 20 friends that could experience this tragedy first hand if they let their guard down for a second.

Oh for a place to call our own. 

Who To Support?

I get asked a lot about which charities are worthwhile to support during Autism Awareness Month.

Here's the first point - NOT Autism Speaks. They simply don't put enough of their vast funds raised into family support. Don't buy a blue light bulb. Don't donate to them. If they can pay their President (base salary over $370,000) a similar amount to what the President of the United States ($400,000) earns (they do), they simply don't need your money. Don't fool yourself into thinking you are doing anything for autism awareness or action by giving anything to them. You're not.

My first advice is to find an organization that is local to you. Find a non-profit that makes a difference in your own community.

Orgs in Colorado include -

Colorado Springs Therapeutic Riding Center
Pikes Peak Therapeutic Riding Center
Breckenridge Outdoor Education Center
Alpine Autism Center
PlayDate Behavioural Interventions
SPD Foundation


National Orgs I like -

Generation Rescue
National Autism Association
Safeminds
TeamTMR

Any of these organizations are worthwhile. They actually help families, which is more than a lightbulb will ever do.

Why We Need Awareness

So, over the years, my attitude towards awareness has changed and evolved.
When we began our journey, I felt that we needed awareness, for the sake of my son, so that people might think before judging him, or me, based on his challenging behaviour.

Then I went through a phase where I was so hopping mad that I felt that every time I heard calls for "awareness" I felt that what people were asking for was acceptance. Acceptance though can go two ways. Acceptance of the person, absolutely. Acceptance of the reality that autism is somehow normal, never. Acceptance of the ridiculous discrimination, challenges, denials of sickness, absolutely never.

I feel like I'm starting to come to a balanced opinion. I can finally see past the blue puzzle pieces that stand for fundraising and money going to pay for celebrity campaigns whilst offering no help to families.

Our cause needs awareness. It needs for people to recognize how many affected children there are out there. Awareness for the shear numbers. Awareness of how those families are struggling. Awareness that comes with awakening. People need to bloody well WAKE UP!!! If not out of compassion, then out of financial concern. The country cannot afford for so many children to need such expensive interventions. Schools are at breaking point. Parents are at breaking point.

Our schools need awareness. Our children are everywhere. Teachers need the tools to be able to educate these kids in spite of their challenges, because they aren't going away.

The medical profession most of all needs awareness. They need to recognize that there are indeed things THEY can do to help these children, without resorting at the first appointment to a prescription for risperdal.

Our government needs awareness. They need to be asking questions as to why the numbers keep climbing with NO answers. What causes autism? How many children recover? How many children are truly affected. Why do the cases present so differently? How do we get answers? Why the proverbial dead horse of genetics and eye gazing keeps being flogged?

It's time to get serious. It's time to really look at these kids from a true biological perspective. There was a study not too long ago that found that some children with autism could be grouped into subsets. Are we really dealing with autism or autisms? If that's the case, we need to be figuring out which autism children have - could it open a door for treatment and recovery, even for a small percentage of children?
Why do these children have immune problems? Why do they have food allergies? What is going on from a GI perspective?

Let's make this upcoming Awareness Month both Awareness and Action Month.

It's time for answers.

Routine..

When a child is diagnosed with autism, or a spectrum disorder, one of the first things you are likely to hear as a parent is "Children with autism need routine".
Parents are encouraged to keep their lives as predictable as possible, to avoid meltdowns and problems processing the change in schedule. We are encouraged to have visual charts to show our children what is happening each day, each week.

Here is my experience with this, and please note, this is not for all children. Some truly do need routine to be able to function. Some kids just have too much going on to even begin to cope with another piece of their world falling apart. But, please, do not buy the line that "all children with autism NEED routine". Some of them can be taught to cope, to adapt, to roll with it.

When our son was diagnosed at 2, we were also fed this line. I considered our life - that of a military family - as well as both mine and my husband's personalities. It wasn't an option for us. Military families move on average every 2-3 years, and indeed just a month after our son was diagnosed, we were due to move again, for just 11 months, after which we would be moving somewhere else. New schools would be the norm for him, including new teachers, therapists, friends, houses, climates, states and doctors. I am a pretty poor planner and a terrible procrastinator, which tends to mean that things get done when they get done, often at short notice, or at the last minute.
So, considering all these factors, I proposed to do exactly the opposite. I would sabotage our 'plans' as often as I could, without causing havoc. I would tell my son we were doing something, then throw in an errand, or say "change of plans", or just 'forget'. Sometimes he remembered when I did this, often in fact. We would just make 'firm' plans to make it up, especially if it was something fun. We would talk about how sometimes things just didn't go to plan.
Sometimes he got upset, although this decreased quickly. After about 18 months, he would get in the car and ask "where are we going today?". I considered this a victory.

Don't get me wrong, I'm not advocating for people to become parenting flakes with their children, but, children (and some adults) need that horrible, valuable life lesson that sometimes plans don't work out. Sometimes people don't show up for parties or playdates. Sometimes things get cancelled. Sometimes you want to cancel. And that is ok. As my son says "It's not the end of the world, mum". Life doesn't fall apart because you said you would take your child swimming at a particular time on a particular day, and well, you just didn't get to it. By insisting that routine is the only way to live gives you an exhausting, unattainable standard to live by.

ABA therapists talk about 'generalization' a lot - that is, the transfer of skills across people and situations and this is a perfect example. If your child has issues when they get a new teacher or a new therapist, what do you do? You cannot insist on 'sameness' so that your child doesn't have a bump in the road. You work through it. Our old therapy office had a great system. The kids would rotate through tutors in timed blocks, so, they were exposed to all the tutors at the center, which was good for the kids and also great for the tutors, since all kids with ASD are so different. Of course, some children might need a little more hand holding through the process than others and some might need to work it slower, especially if they are used to a very consistent routine. But, the reward of having a child that can fly by the seat of his pants and have a little more spontaneity is just amazing.
Give it a try.... :)

Vaccination Bullying

The bullying I've seen both in the media and on Facebook lately regarding vaccination has been horrific. From a case of measles at Disney that has spread to less than 200 people total around the country, the response has been absurd.
Measles, you know, the disease most of us had as children, which involved some spots, a few days off school and lifelong immunity. Not to say that there aren't sometimes complications, but, on the whole, for healthy children, measles is not a problem. I even had it myself. Not dead yet.

But, the response and vile comments from the public at large would have us believe it is something more akin to Ebola.

Also being debated on every news show is the issue of exemptions from vaccination for school attendance. Most states have multiple exemptions available to children and their parents.

It seems, the common consensus is that unvaccinated children are a public health menace and need to be quarantined, their parents fined or even jailed and them forcibly inoculated. Yeah, seriously. In the "Land of the Free" and the home of the "Brave", grown adults are advocating for parents to be jailed for deciding that the MMR vaccine is too much of a risk for their child, regardless it seems of any concern for that child's other medical issues. Where do we live again? North Korea? Did our children suddenly become the property of the state? Did our rights as parents disappear? Are all parents who decide they aren't comfortable with a particular vaccine complete idiots who must be removed from that responsibility immediately to save the human race from immediate destruction?
What a load of absolute nonsense.

The general picture being painted by the media right now is this -

- Measles is a virulent deadly disease that had been wiped out and now these unvaccinated children are bringing it back and it will kill any child it comes into contact with.
- The MMR vaccine is perfectly safe and perfectly effective. Vaccine injuries are massively rare. In fact unheard of, because when something is perfect, there are no problems. Ever. Get your kid vaccinated. Now.
- Parents who don't vaccinate are evil and want your child to die from measles or some other horrific disease. They must be stopped. They are dangerous and shouldn't have children. They are the "anti-vaxxers". And they are stupid and misinformed.
- Andrew Wakefield started this and is the devil.
- Anti-vaxxers are Wakefield devotees.
- Measles will kill your child. Get them vaccinated.

It sounds ridiculous, no? But, turn on most news stations and that's pretty much the picture that will be painted.

So, a few comments from yours truly on this subject and a few of these points,..

- Measles IS a very virulent disease, but it has never been truly wiped out and there are cases in the United States each year. Don't believe me? You can check the CDC numbers for yourself. Unvaccinated children however are not always the cause. Measles is not spontaneous, it does not just appear. It could've come from a child or adult from another country, or from a child or adult that travelled to an area where measles was active and brought it back to the United States. Additionally, the MMR is a live virus vaccine, which means that for a few weeks after vaccination, children and adults can transmit the virus to others. This is not my opinion, it is a fact. Measles rarely kills healthy people. Indeed, there hasn't been a death from measles in the United States for 10 years.

The MMR vaccine is neither perfectly safe nor perfectly effective. Why? Because nothing is. There are risks with any vaccine. Are they rare? Yes. Mostly. Although, it has been estimated that the real reporting numbers for vaccine reactions are approximately 10% of the actual reactions that occur. So, maybe they're not as rare as you might think. The US government actually set up a whole separate legal process for vaccine injuries, so, clearly there must be a need for it. They pay money to families who have a loved one who is injured or killed (yes, I did say killed) by a vaccine reaction. If vaccine reactions are so rare, why do the vaccine manufacturers need a separate process (in closed hearing rooms not open court) for claims against them? Why the secrecy? What the media doesn't report too often on in the mass hysteria we've seen recently is that many cases are in vaccinated individuals. So, the vaccine doesn't always work and produce the protection it is supposed to. But, let's be clear here, with every vaccine comes a risk and it comes with no guarantee that it will protect against the disease itself. Additionally, the immunity from the vaccine does not last forever as it does when you actually get the disease, it is temporary and it varies for each person.

Parents who don't vaccinate are evil. Well, yes, sometimes. Aren't we all? But, here is the truth. Try talking to parents who don't vaccinate and ask them why. Instead of wondering where their 666 tattoo is, talk to them. EVERY parent I know who either no longer vaccinates or who has chosen a different vaccination schedule has usually reached that position by experience. They almost all started as believers in vaccination. Then something happened to their child. They saw their child get sick, maybe develop seizures (which are listed as adverse reactions to vaccines), maybe the child developed gastrointestinal problems, maybe they were listless or screamed after the shot, for days on end. Maybe nothing major happened, but the child gradually got sicker and sicker, picking up ear infection after ear infection, developed awful diarrhea, maybe they stopped talking, maybe they stopped responding to their name. The parents saw a sick child and asked for help. As someone who experienced many of these issues, including a head growth surge in infancy that was NEVER mentioned that it could be a vaccine reaction (it was) by a pediatrician, let me tell you - when your child gets sick for no reason and then starts going backwards and all the doctors can tell you is that it's "definitely not the shots", frankly, you don't believe them. You realize that your child's immune system has something terribly wrong and how on earth can adding more vaccinations be a sensible option for a sick child. Even the vaccine inserts instruct against vaccinating a sick child.
Here's the truth. Parents who don't vaccinate are terrified. Their children are sick and they more than anything, don't want other parents to experience the same. No-one would wish their experiences on anyone. Whilst they are terrified, they are not crazy. What do they gain by saying "be careful, take your time, don't vaccinate when sick, don't use tylenol"? Nothing. They gain nothing. Whereas, your pediatrician gains, the pharmaceutical company gains, the patent holder gains. Who do you trust more? Just asking.

Some of the smartest people I know have stopped vaccinating, or changed the schedule, or selectively vaccinate. I'm talking lawyers, doctors, teachers. Not your average imbecile. Many of the parents I know have at least a bachelor's degree and many have postgraduate degrees. They are educated, rational, reasonable people.

No-one wants anyone's child to get sick from a preventable illness, but, as parents, our first responsibility is to OUR OWN children. They are sick, they are those children who cannot be further vaccinated. Trust me, an outbreak is the last thing anyone wants. But, right now we have a far bigger epidemic on our hands and it kills daily. It's called autism. These kids wander and drown all the time and yet, what makes the news? Not the little guy found in a pond, but the outbreak of a disease that hasn't killed anyone in 10 years at Disney. I don't understand it and I regularly wonder if I'm living in the Twilight Zone.

For those who shout about Andrew Wakefield, the vast majority of the people have NEVER read the paper he wrote. It NEVER said MMR caused autism. It said that the children with autism had bowel disease and the parents had reported onset after vaccination with MMR. Go ahead and read it for yourself. I'm not lying to you. It called for further investigation into bowel disease and MMR. Interestingly, bowel disease is now one of those things that even the AAP recommends investigation for in children with autism, because it is so prevalent in the condition. My own son had horrible bowel problems. The parents who witnessed these problems in their children went to Wakefield, not the other way around. Additionally, Wakefield is NOT anti-vaccine. He actually recommended that if parents are concerned that they vaccinate with each component of MMR separately and space them out, although, he doesn't support the mumps vaccine. Why? Because mumps is a risk to males of reproductive age. If males get mumps whilst a child, it gives lifelong immunity and does no harm. Our problem now is that the MMR wears off right around the time of when mumps could cause reproductive damage to males.
Merck's response to this? Instead of saying "we understand parents are concerned and we want to show we support choice and flexibility in the schedule", they discontinued the single measles vaccine. Nice huh?

Many parents saw issues with their children before the paper came out. Many people of this generation hardly know what the fuss is about. We saw some problems with our son prior to MMR. I don't think MMR helped though. His immune system was already crashing and MMR pretty much finished it off. It's funny that people say that these so-called anti-vaxxers are Wakefield devotees though, since, he's not anti-vaccine.

- Measles will, in all likelihood, NOT kill your child. Stop panicking. We panicked less over a potential Ebola outbreak in this country than we have over measles. Ebola really does kill.

So, here's my little summary on this and I'm going to bullet point it for you.

- Stop with the hating. We all make different choices that we believe are best for our children.

- Want to vaccinate on schedule? Go ahead. I really don't care what you choose to do because your children are your children. It's your right to do that. We vaccinated on schedule, until our son got sick.

- Stop with the absolute illogical argument that the unvaccinated are a risk. If anything, it's the other way around. They are the ones AT RISK. If the vaccine works, your children are protected, you have nothing to worry about. If it doesn't, well, take that argument to the vaccine maker and try and get a refund. In the meantime, my child is at risk from yours.

- Stop dragging up Wakefield. Please. It's old news. There is a proven association between GI issues and autism. Just ask the AAP.

- Have some compassion for parents who have children with special needs, whether from vaccine injury or not. Their lives truly suck sometimes. The last thing they need is to be patronized by those who have escaped the difficulties their children experience on a daily basis.

- If you don't know anything about autism, or don't have a child with autism, then please, shut up on the issue of 'vaccines don't cause autism'. You don't have a dog in the fight. You have NO clue what these parents saw, or no idea how they struggle, or of the guilt they feel. Don't pile on.

- Use the old saying your mother (hopefully) taught you - "If you don't have anything nice to say, then say nothing". Please. Don't spout off some hateful judgmental nonsense just because you can. Think if you would have the guts to say that in person. If you don't, then, stop yourself.

- Don't assume that parents who don't vaccinate are anti-vaccine. They're (we're) not. We just don't feel it is a prudent choice for OUR children.

- Accept that live virus vaccines shed. This is fact. It is science. If anything, a vaccinated child or adult) should be quarantined to protect others, since for about 3 weeks, they are a walking transmission factory. Live virus vaccines include flu (intranasal), varicella, vaccinia (smallpox) and MMR.

- There has never been thimerosal in live vaccines, they can't, because it would kill it. So, if you bring up MMR, don't mention thimerosal in the shot, it's not there. Parents who have researched this know this and if you don't and you're trying to pick a fight, this is a sure fire way to show you don't have a clue what you're talking about. Also, thimerosal is still in some shots (multi-dose flu shot vials). It is also a neurotoxin, whichever way you look at it. If it's not safe to roll around in your hands, it's not safe to inject into people at all.

Want to know what we would do if our son didn't have issues? We would still vaccinate. But, given all that I know about his impaired immune system, we would go slowly. Very slowly. We wouldn't bother with Hep A or B. We would never do a flu shot. We would not have done rotavirus. We would delay MMR until after the age of 4. We would still not vaccinate for chicken pox.

We are not the devil, really. We are just parents who were unlucky and our kids crashed. And we're struggling to get back to normal. Instead of attacking us with nonsense, try having some compassion and support our choices, as we support yours.

Parents - here's my advice. If the news out there right now is getting you down, honestly, the best thing to do is disengage from it. Or write a blog post to vent....


Finally, I moderate all comments. So, anything nasty won't be published. You'll be wasting both your time and mine, but, it's a lot quicker for me to press 'delete' than it is for you to type it. Again, if you have nothing nice to say.....