A Letter of Advice to my Former Self

To my former self, on the day we received one of Caidens first (and scarriest) diagnoses;

Not every parent can say they have their child's pediatrician's personal contact information, but then again, Caiden isn't the typical patient. You should be proud of yourself for deciding to stick with this doctor. She's going to be an essential part of the diagnostic process, and your biggest - professional - supporter.

When you receive one of his very first diagnoses, she's going to call on her own time from her personal number so you can talk about it. Remember to save her number like she tells you to, you'll need it later. You'll spend a good half hour on the phone scribbling down notes as she explains three words that should never be put together when talking about an otherwise healthy child.

Global Cerebral Atrophy.

Its only by chance that we stumbled upon it, and it won't be the last unexpected diagnosis in his ever expanding medical file. That one routine MRI to rule out cerebral palsy, a possible result of his prematurity, will be the catalyst that turns your life upside down and catapults you into unknown territory.

Don't waste your time Googling it, you won't find much as most of it doesn't pertain to him, your best source of information will be the neurologist. I know you're scared. You thought we were just dealing with autism, something I promise will finally be diagnosed in a few more months, but now you're suddenly faced with the very real possibility that his brain is dying, and its terrifying.

Go ahead and cry, just remember, you are not to blame for this.

Make sure you take notes when she calls, even if they're a mess. The other doctors you're referred to will want to see them, its difficult keeping all of his doctors on the same page, so notes and appointment summaries are very important. Don't forget to bring his records to every appointment.

You're going to hear words like cancer, deformity, trisomy, and biopsy, but six months, three additional doctors, and a dozen tests later, most will come back normal, and you still won't know much more than you did that day.

And that's good, it means most of the really bad stuff has been ruled out. You aren't in the clear yet, but you'll handle each bit of information the best way you know how, and you should be proud of that.

Remember that in order to find out the answer, you need to pace yourself. If you schedule too many things too close together, you're going to get burnt out. You can't be his voice if you're hospitalized for exhaustion.

Lastly, and most importantly, try to remember that you're a good mom, even when you don't feel like one. Despite the mountains of self doubt and mommy guilt, I want you to know that he loves you, even if he can't tell you for himself.

The Importance of Routine

Its 9:30am. Caiden is eating breakfast right now. Scrambled eggs, toast and a banana - his favorite. Winnie the Pooh is on, and he's laughing at all his regular spots. Eeyore bounching down a hill is as hilarious today as it was yesterday, and the day before. The poor donkey's melancholy is something I'm all too familiar with.

Just a half hour ago, I was sobbing in the kitchen over a pan of eggs, and not because I'd realized I had forgotten to add cheese to make it just the way he likes it.

Ten minutes before that, we were at therapy.

Leaving.

Caiden has gone months without a serious meltdown. Even through the holidays and the major schedule changes, he didn't have a single one. Sure, there are plenty of harmless tantrums, but its been a while since he had one of his bad ones. The hour long (plus) ones with blood curdling screams, gagging, hitting... the whole nine yards.

He had one this morning. At therapy. After being there barely five minutes. His regular physical therapist wasn't going to be there today, so we were asked to come in a little early so that the other PT could see him and avoid a scheduling conflict. Sure, no big deal.

But I messed up. I was under the impression that he would still be having speech and OT first, and then see the other PT. They turned it around. PT was scheduled first this morning, and with a different person. Big, BIG mistake. He cannot do PT first.

Caiden, understandably, lost it. For twenty minutes.

And then mommy did too.

We've been dealing with these meltdowns for almost a year. They started shortly after he lost his speech. Almost a year, and I still have no idea how to help my son. All I can do is try to make sure he doesn't hurt himself and remind him to breathe, which of course he doesn't understand.

Its horrible. Heart breaking. Especially when surrounded by people who want to and are trying to help, and even they give up and just watch. I would rather deal with HELLP all over again than have to watch him struggle, unable to calm him.

Its days like these that I hate autism. Mostly I hate it for taking away his voice, for instilling a twisted sort of fear in me I never knew before, but today I hate it for taking away the spontaneity in life. He will never get bored of his routine, he will never long for change, he may never find joy in adventure. I often wonder if we'll be able to take him to a park this summer. Will the change in routine be too much for him? Will he be able to adapt to daycare or preschool when he goes?

He was fine as soon as he was buckled in the car, his routine back in order. And so we sit here doing the usual, him eating breakfast like this morning's meltdown didn't happen, and me writing and wondering, and trying to hold myself together.

"Do you want to take him home? We can try again tomorrow."

Tomorrow we'll be back at therapy. His regular PT will be there, and he'll see her after he sees his OT and speech therapist. It'll be just like any other day. He might get mad, but we'll make it through the whole appointment. He'll go down the stairs on his own, and we'll clap for him. He'll use his signs, and we'll encourage him. He and his therapists will forget about this morning.

I'll try too, but I'll remember it. I'll remember to double check the next time I schedule something. I'll remember when one of our doctors asks how he's been doing. I'll remember when I still won't know how to help him when he has another.

The Great Vaccine Debate

As an autism parent, you are either pro- or anti-vaccinations. There's no middle ground. There just isn't. Either you believe the MMR vaccine caused your child's autism or you think those who believe that are crazy. As autism parents, we have enough on our plates without worrying who's going to open the flood gates and start WWIII over vaccines.

But here's the truth: y'all are equally crazy.

When I was a few weeks old, after a severe bout of jaundice left me "untouchable" and in a box for three days, I developed a bout of pertussis, more commonly known as whooping cough. I almost died. Now, more than 20 years later, most mothers and babies are vaccinated for whooping cough, saving roughly 200,000 children each year.

However, with the anti-vaccination movement gaining momentum, more and more cases of vaccine preventable illnesses are cropping up. It begs the question, if vaccines cause autism, and more and more people are refusing vaccinations, how come the autism rate is still increasing? Shouldn't it be going down, or at least stabilizing?

The answer is, neither group is correct.

The debate doesn't have to be black and white. If parents would put aside their guilt and their god complexes, we could all get along nicely and support each other like we should.

In Caiden's case, his autism wasnt caused by a vaccine. He was delayed before he received his MMR vaccine and regressed six months after he received any vaccine at all. We never noticed any problems with him around the time he got any of his vaccinations.

However, he's just one child. This doesn't mean another child didn't have adverse effects to their vaccines just because mine didn't. People are different. They react differently to everything around them. Some people can't handle dairy, some its nuts, or gluten, or penicillin, or codine.
Pick your poison.

With anything we take into our bodies, we run the chance of having an adverse reaction to it. Some do, some don't. This can be why we often see identical twins, one with autism, and one without. Or one with an allergy, one without.

If the pro-vaxer could say to the anti-vaxer, and the anti-vaxer to the pro-vaxer, "I'm sorry your child developed autism," instead of fighting over the "why" we could do more to help each other.

There is absolutely no need to force your opinions down someone else's throat. You CAN have a civilized discussion without fighting, and not one side has to be 100% correct.

Yes, the why is important, but there's no sense in fighting over it. As autism parents, we have a hell of a lot more to worry about than something we can't change. None of our personal opinions on the matter are going to help find the answer.

Now here's my opinion because you're reading this and I'm choosing to share it with you

Autism doesn't have to be a result of just one thing. The final answer, the "why" doesn't have to be just one thing. You don't have to pick between vaccine's causing it or genetics causing it. You don't have to pick pollutants or GMOs causing it. It could be a combination of many. The key thing is, we don't know yet, but at least we can be thankful that it's being worked on.

In the end, you have to make a decision though. As a special needs parent, and someone who almost died of a vaccine preventable illness, autism isn't the worst thing that can happen to your child. Sure it isn't what any parent wants for their kid, and it's a fucking difficult path to walk, but the end of the day, having an autistic kid is better than having a dead one [from a preventable illness].

Another Specialist

Monday we drove four hours round trip to see a diagnostician (prerequisite to seeing a geneticist as they don't have enough appointment slots). What I expected to be an hour long appointment turned into four!

The doctor we saw was AWESOME. She took a very, very extensive history and even knew what HELLP was! Considering its a rather rare condition (and not part of her specialty), her knowledge of it speaks volumes. We got a LOT of information, so bear with me here!

She started with a typical physical, he's 34.5lbs! And still has a big head at 53cm, up 1cm from June. Then had him walk around the room. He has wobbly knees. Basically, he doesn't have the balance or the strength to hold himself up which causes him to fall a lot. He compensates by walking funny. He walks with his feet pointed out and his knees slightly inward. It needs to be corrected at some point, but if he hadn't altered his gait, he wouldn't be walking at all.

There is some concern about his heart. Caiden's heart rate and blood pressure were high and with a family history of hypertension, she wants our regular pedi to monitor it. Also, one side of his chest is slightly sunken in. She doesn't know of its muscle related or skeletal, so Caiden needs an EKG, heart echo and chest x-ray.

She noted along with his huge head, he has a very prominent upper lip, and droopy eyes (made more noticeable by the fact that he was exhausted yesterday), and thinks we may be on the right track with suspecting fragile x.

Good news is, while we didn't get to meet with the geneticist, she was able to consult with him/her while we were in the office and get his/her recommendations on additional tests. The diagnostician was able to provide enough medical evidence to prove the necessity of the tests and insurance approved it! We were able to have the labs drawn while we were there which should cut down our wait time.

Aside from the fragile x and microarray labs, Caiden had four others drawn:
• repeat CPK to compare to the previous two
• hypotonia panel to check for conditions such as muscular dystrophy and spinal muscular atrophy and other conditions that can cause hypotonia
• PTEN panel to check for very specific conditions related to the PTEN gene. They can be responsible for various cancers, tumors, heart and muscular conditions
• An aldolase test, very similar to CPK, measures an enzyme also related to muscles. If its high it'll let us know to check for muscle damage, heart damage, cancers like leukemia and pancreatic, muscular dystrophy, and rare genetic conditions related to the skeletal muscles

Our neuro has decided we only need to go back if the CPK and/or aldolase tests come back high (we'll need to discuss a muscle biopsy because of the added heart concern), or the genetics come back with something. If we see Caiden regress again he wants us back in immediately and we'll discuss his brain issue again, but we shouldn't need to see him regularly anymore.

Our pediatrician is sending us straight to a cardiologist to do the tests concerning his heart, so we're adding another specialist there.

So, if you followed all that, here's a list of Caiden's diagnoses to date:

1- Autism (ICD-299.00)
2- Hypotonia/ataxia (ICD-781.3)
3- MTHFR (ICD-270.4)
4- Tachycardia (ICD-785.0)
5- Cerebral Microcephaly/Global Cerebral Atrophy (ICD-742.1)
6- Developmental Delay (ICD-783.4)
7- Deformity of Chest and Rib (ICD-783.3)
8- Congenital Abnormalities of skull and Face Bones/Macrocephaly [his giant head] (ICD-756.0)
9- Congenital Abnormalities of Face and Neck [facial features] (ICD-744.89)

Fuck You Holland; The Diagnostic Process

If you follow our Facebook page, and if you're reading this, you probably do, then you likely have an idea of where I'm going with this post just based off the title. Yes, I'm tackling the hellish process that starts with the initial concern to the final diagnosis. We haven't gotten to the end of the journey yet, but I have a pretty good idea of where its headed.

There's a poem or short story entitled "Welcome to Holland" that keeps making its way back to me. If you've had a preemie or something unexpected happen, you've likely read it too. It compares an unexpected event to boarding a plane to a vacation in one country, only to end up in Holland instead. Sure its not where you thought you were going, but you can enjoy Holland anyways.

I hate that story.

The important thing its missing is that while the destinations are totally different (what you expected and what you ended up with) and can be great, the author fails to mention that the trip to Holland is full of turbulence and the plane is lacking seat belts and sick bags.

I like to think the ridiculously lengthy process is like a car ride instead- mainly because planes don't really fit the metaphor I'm going for here. But its no ordinary car ride. Its like getting in and knowing you're going to be in an accident (because no one wants to invision a plane crash). You don't know when it'll happen, where it'll happen, or how badly you and your fellow passengers will be injured, you just know its going to end badly.

When we first strarted noticing something was a little off with Caiden, we prepared. We went over all the maps we could lay our hands on, buckled our seat belts and obeyed the speed limits. And yet, we still managed to hit all the potholes, miss turns, and sit through green lights. When we finally got to the diagnosis, we crashed into it and walked away with a case of whiplash.

After Monday's appointment with the diagnostician (read the full update here), I feel like we're back in that car, barreling down the road with our eyes closed bumping into everything in our path. Were going to crash into the test results, and this time we might not walk away from it.

I'm quite honestly petrified of what his labs will tell us. I'm also scared they won't be able to tell us anything and we'll be back to where we started only having to try again. We can handle autism. I don't know if we can handle some of the other things they're testing for.

I thought that getting Caiden's ASD diagnosis would be the worst part of this whole process (remember its taken is a year to get to this point), but while the diagnosis part definitely sucks - as important as having answers are, its definitely the waiting. By the time we got his official diagnosis, we already knew that's what it was and were actively addressing the issue. The wait had given us enough time to confirm our own ideas and get the ball rolling on managing it.

This time, we don't have that luxury. We're left with no leads, no good ideas, nothing to fill up our spare time and no direction to head in. The stress seeps into your bones and everyday its there reminding you, one of these days, they're going to call, and you're going to crash.

But like an idiot, you keep getting back into that damn car, because if you don't, you'll never know where the road finally ends and what the diagnosis is. Its not strength that gets you through the day or causes your knuckles to turn white as you grip the wheel, because really, you do what you have to as a parent no matter what. If it were your child, you wouldn't give up either.

What keeps you going is the chance that maybe you won't crash when you stop. Maybe the answers won't be as bad as you fear. Its the hope that maybe it'll be okay and the constant pain in your heart will eventually subside.

Because when it's your kid, you don the armor and go to war, even when you're already broken.

Official

Yesterday, we got Caiden's official autism diagnosis (on paper). For a kid who just turned two a few months ago, he now has a pretty lengthy list of issues, and we're still waiting on several things to know if we'll be adding more. To date, he has been diagnosed with:

Autism Spectrum Disorder
Ataxia
Hypotonia
Developmental Delay
Cerebral Microcephaly
Global Cerebral Atrophy
MTHFR

Its taken almost an entire year to get ASD put on the list, and nearly as long for the rest. It's been tremendously exhausting, and we're not even finished yet.

Our appointment yesterday was a follow up from June with the developmental pediatrician. We went over test results, and she wanted to see how therapy has helped, along with discussing our concerns. Top of my list was autism.

I was worried she was going to be resistant to diagnosing him, and I was right.

It wasn't until we were getting ready to leave that she decided to have me fill out a few questionnaires because his behavior "didn't make sense" to her. He "kind of" fit has some behaviors she wasn't sure about, so she didn't want to diagnose him. Big surprise, he scored very low, even among kids like him, in all areas, so she went ahead and finally put it on paper for us.

We discussed medication. Caiden is still a bit young for anything, but if his meltdowns become much worse we were told to consider it. He's large enough (33lbs and 39in) that he would be able to take it if need be. We're hoping to stay away from medications as long as possible, but its reassuring to know we'll have it as an option if it comes down to it.

I admit, though we've known for a while that he's autistic, I teared up a bit when she told me she was finally going to go ahead and diagnose him. On one hand, I'm relieved we were finally taken seriously, hopefully now we'll be able to get him more services and things will get better. But, part of me still hoped we were wrong, that it was just a development issue.

Getting confirmation that your child is disabled is hard. I have a lump in the back of my throat that just won't budge. Things might get better, but this isn't going away, no matter how much therapy he gets. The rest of our lives will be spent fighting for services and worrying about bullies and what's going to happen to him when we can't care for him anymore. We're going to have to be his voice. We have to throw away the future we envisioned him having (again), and try to imagine a new one with autism.

Regardless of whatever additional diagnoses he ends up with, he's still Caiden. He's still the same giggly little boy, and we still love him the same. If anything we'll hug him tighter now, we'll appreciate the little things he does and stand in awe over the progress he makes.

We'll learn to live in the moment and not by the milestones. And with this cutie pie to share them with, that's alright with me.

Parental Abuse

There's a woman named Kelli Stapleton. If you're part of the autism community, you've no doubt heard of her. She is a 46 year old mother and once prominent blogger and autism advocate.

She's also a victim of parental abuse, a topic that is severely under reported and under researched.

Kelli has a 15 year old daughter who is severely autistic. Autism is a very lopsided spectrum. Only an estimated 7% of cases fall on the severe end. A majority of the rest are high functioning and Aspergers (often considered the same thing). They are typically non-violent and the children you hear about winning kids Jeopardy! or are music or math prodigies like Jacob Barnett.

The Stapleton's, like many families with autistic children, struggled to get their daughter the help she needed. For severely autistic children who are also prone to violence, help is often out of reach and/or unavailable.

[Read mom, blogger, author and advocate Liza Long's novel on mental illness, her son's violence and the school-to-jail pipeline here.]

When a severely autistic child has a meltdown, they can get violent. These meltdowns can last hours, often with no apparent triggers. As toddlers, they hit, punch, kick and bite, and the target is usually the primary caregiver- mom, who is only trying to keep her child from injuring themselves. As these children age however, they get stronger.

In an article published by NBC news, one mom, who's child attended the same facility as Kelli's daughter, is quoted saying, "the punches no longer become bruises, they become knock outs. The kicks become fractures and broken bones," in regards to the impact age/size has on the violent meltdowns.

Kelli's daughter had a history of injuring her mother, sending Kelli to the emergency room at least twice in the time leading up to her daughter's placement in a facility for intensive treatment for her autism.

The Stapleton's were trying to get their daughter the care she needed, but when plans apparently changed, Kelli snapped.

In September 2013, Kelli and her daughter were rescued from their family van suffering carbon monoxide poisoning. The source- two charcoal barbeques Kelli had lit in an attempt to kill both herself and her daughter.

Kelli recovered quickly while her daughter was in a coma for several days, but eventually did recover completely with no adverse effects, or even the understanding of what happened.

Kelli is currently incarcerated on charges of attempted murder, which she pleaded guilty to. She faces up to life in prison.

There is no excuse for trying to kill your own child. As an outsider likely facing a similarly troublesome future with my own child, I pity this woman and her family. As hard as it is to find appropriate help and care for a violent child, there are options when all else fails that do not include attempted murder.

There are residential treatment centers around the country to step in and house and care for these often dangerous children and teens. A parent has last resort options such as an RTC, or regrettably, giving up parental rights completely, forcing the state to provide otherwise unobtainable care.

There are no good options for parents of severely autistic children, however murder-suicide shouldn't even be considered as one.

There's something we seem to have forgotten as a culture. Empathy.

Empathy is defined as "the ability to understand and share the feelings of others."

While I can't condone what Kelli did, I understand, and I feel horrible that she felt death was their only option. Parents who have violent children often show the same behaviors and emotional trauma as victims of domestic abuse such as flinching, walking on egg shells, hiding injuries, etc.

Kelli is a parent who was abused by her daughter and snapped. No one should be injured at the hand of someone they love, and yet parents of violent children are expected to put up with the abuse and "deal with it" because its their child.

These parents need options. They need to know they have options, and they need to know how to access them. They shouldnt have to choose between pressing assault charges on their child, or signing away their rights. Instead of reading headlines and labeling this woman as a monster, try to image how well you would fare after 15 years of abuse and being unable to do anything about it. She likely felt she was the only one who could handler her daughter, and only killing herself would only force someone else to take her place. If she couldn't handle her as her mother, she likely thought no one else could.

Again, murder should never be an option. This woman made a terrible decision, and committed a terrible act. She should be punished for it. However, I think this case offers a unique opportunity.

Autism does not need awareness, autism needs action. Affordable, quality care needs to be accessible to all affected by autism. Parents shouldn't have to suffer through months and often times years of waiting lists and "I don't know" answers to get their kids help. Behavioral therapies such as ABA (applied behavioral analysis) need to be available and included as part of the typical therapy approach when managing autism.

As a culture, we need to remember to have empathy whether or not you agree with a persons actions. There are millions of people in the world suffering through unimaginable trials, and its no ones place to judge how they deal with it (criminal trials aside), but we can all take a moment to consider how they must feel before criticizing.