School Woes

Today, my heart hurts...

When I was pregnant with Caiden, I swore to myself we'd have family dinners. I used to bother Korey about wanting him to get used to eating without sitting in front of the TV because, once Caiden was in school, I wanted us to eat dinner at the table like a real family. I wanted us to be able to talk about how our days were in a way I never got to growing up. I can count on one hand the number of times my family ate dinner together at the dining room table when I was growing up, holidays and birthdays not included. Like a lot of things growing up, it was just one more normal thing I never really got to experience. It was something I was always jealous of other people for, and it became more important to me as I got older and started my own family that I fixed it.

This didn't exactly work out as planned though. When we moved into our house now, I bought a brand new dinning room set and a beautiful rug to match. We needed one for the dining room anyway, but I think part of me secretly hoped that it would give us an excuse to have those family dinners.

Caiden has been in school for a month now and those conversations are not happening. Instead, our meals usually consist of me holding a spoon in his face and begging him to take just one bite, and to please, not spit it out. When your four year old still can't feed himself, normal things like that kind of get forgotten.

Honestly, the particulars of what he did at school that day is the last thing on my mind when we're having dinner. On the walk home from school in the afternoon, I hold his hand and ask him how school was. I know he can't answer me.

He tells me "school," when I ask if he had a good day at school.

He tells me "side," when I ask if he went outside.

He tells me "fun," when I ask if he had fun, and for a second that's okay, because in his backpack is a parent-teacher communication sheet that should tell me what I want to know. When we get home I'll be able to look at it and tell what he did.

I was really nervous about him starting school, but after an extremely anticlimactic IEP meeting, and a good classroom environment, we felt pretty good about him starting. His first couple weeks were tough, but now that he's gotten used to going, he gets really excited when its time to get ready for school. This week, he didn't even look back at me when I dropped him off, he just let go of my hand and walked right in the door. Its good to see him so happy about school.

However, outside of the communication sheet, I have no idea what's going on while he's there. At the beginning of the week, I get a 'newsletter' about what they're focusing on for that week. Its usually a letter, number, shape and color, along with the name of whatever book they're reading. He's brought home a few worksheets he's done with an obvious amount of help, and a few pictures he's colored.

The first few weeks it seemed like things were going well. This week was completely different.

Today, Caiden came home from school with a bump on his face. His parent-teacher communication sheet is almost empty for this week, and today, there was absolutely nothing written on it at all. From what I could tell, his teacher wasn't even there today. Its not a huge mark, but its right next to his eye, and I have no idea what happened. I don't know if he fell. I don't know if he walked into something. I don't know if another kid hit him. I know its not a bug bite, but other than that, I have no idea.

Yesterday, he was in tears by the time they released him to me. At the end of the day, the kids line up inside and are dismissed a few at a time. Caiden doesn't understand this. He knows that he gets to go through that door and go home. He doesn't know why they're making him wait and why he can't rush through the door immediately. So they make him wait his turn. Which, I am perfectly fine with. He needs to learn how to wait, however, it is unacceptable to let it get to the point where he is sobbing. He doesn't understand, and making him wait until he calms down is counter intuitive. He isn't going to calm down until you let him go.

When we enrolled Caiden in school, we were very upfront about him not being toilet trained. His development is significantly behind, even by their psychologist's standards, and he's no where near ready. They stated they were very willing to work with us on it, and that it was our job to provide them with pull-ups instead of diapers. Not a problem. The sooner he is potty trained, the happier I'll be. However the school doesn't seem as on board as they first seemed. Monday, Caiden's pants were wet. He'd peed through his pull-up. He hadn't been changed. They haven't changed him a single time since he started school. He's only there for two and half hours, and we live half a block away, its "not a big deal" for him to wait. I know he's afraid of the bathrooms. I know its going to be a huge adjustment, but I'd rather they piss him off and change him, than let him sit in a wet pull-up for hours.

Thankfully, parent-teacher conferences are coming up. I like his teacher, I really do, however I can't allow this to continue. The lack of communication is absurd. He's in a small class with two para's in addition to her. There's no excuse for a communication sheet to be left empty when they know its the only way for us to have any idea what's going on. Caiden can't tell us what he did at school. We can't have those conversations with him when we don't know anything. Caiden doesn't get homework, but I know how important it is to continue at home what he's doing in school. We can't do that if we don't know what's going on in the classroom. It may have just been a little bump this time, but how can I trust them to let me know if something bigger happens? He can't tell you when he needs to be changed, and its apparent they aren't checking him. We've been lucky that he's only peed while there so far, but should he have a bowel movement and he comes home dirty, there will be hell to pay.

I was told that Caiden's elementary school is one of the best in terms of special education in the area. So far, I have been gravely disappointed.

Caiden's Birth Story

Today is my 4th HELLP-versary. Four years ago today I was diagnosed at just 31 weeks with severe preeclampsia and Class I HELLP Syndrome, a rare and all too often deadly condition. It is the day that catapulted us into the preemie world and having a special needs child. As the years have gone on, my memory has faded, but there are some things I will never forget. This is something I wrote shortly before Caiden's first birthday, with a few factual edits.



As Caiden's first birthday is fast approaching I find myself thinking back to his delivery and time in the NICU. Its hard not to think about how his story began as we approach the anniversary of his surprise arrival. He's come so far in such a short period of time, I can't imagine being more proud of him.

I remember the day I went into the hospital, I was prepared to be sent home like every other time, expecting to be told my pains were normal and to rest. I was in excruciating pain, unable to stand or sit up right. I wish I had taken one more picture of my belly before laying down in that bed. I had no idea I wouldn't be allowed to move the next three days. I remember my doctor coming in and telling me what was happening in two seconds flat before walking out. I didnt understand. Before they started an IV I asked if I could get up and walk around for a minute. It was the first of many No's I would be told over the next few days.

I remember calling my mother and bawling as I told her I was probably going to have a c-section and begging her to fly down as soon as she could. I remember crying as the nurses dug around my veins trying to put an IV in both my hands, failing to numb one and then finally putting it in my wrist apologizing profusely, leaving me with a scar I still have to this day.

I remember watching my husband walk in, still in his work uniform and the scared look on his face as I repeated "I'm sorry" over and over again. All the conversations we had about viability and promising the likelihood of an early delivery happening to us was slim, turned into lies.

I remember the ambulance ride as I was transferred to a hospital with a NICU. It was the first time I'd been in an ambulance. The paramedic who sat next to me and held my hand, telling me stories of his own preemie. I remember the blood pressure machine that sat above me and the sorrowed look on his face every time he read the number. I remember not being able to stop the tears from flowing as I wondered if I was going to walk out of the hospital I was headed for.

I mercifully, don't remember much of my labor. It was three days long and the pain of multiple organ failure grossly out weighed the pain of contractions. I do remember as I was getting ready to push the nurse told me not to, I was supposed to wait but I didn't have a choice. He was ready to come.
I remember kicking the doctor in the stomach who was there to catch him.
I remember dozens of people walk in as I was pushing, waiting to evaluate what was wrong with my child.
I remember him crying and how happy I was to hear that wonderful sound. I relaxed and for a moment, for the first time since being told I was having him early, I felt at peace.
I don't remember him being held up by my face so I could see him, or the comments I'm sure were made about my practically dead placenta.

The first 24 hours after his birth went by slowly. I was torn between resting and wishing I was allowed to get up and go see him. I was refusing pain meds, I didn't hurt. I didn't understand why they wouldn't let me out of bed, but I suppose stroke level blood pressure is as good a reason as ever.

The first time I was allowed to go see Caiden, I was insanely nervous. I didn't know what I was going to see. I didn't know how small he was or if the steroids had been given enough time. I'd never seen a premature baby before. As I was wheeled out of my room, and down a maze of hallways we passed two nurseries. I remember smiling at the sleeping babies and wishing my son was in there, chubby and healthy, just waiting to be brought back to me. I remember how lost I was going through the hallways. I had never been in this hospital, I didn't know where anything was, I didn't know what the inside of a NICU looked like. I hadn't seen anything but the walls of my room for days.

As we rounded the final corner we approached a large set of double doors with a corded phone on the wall. I remember my mother who had been already, telling me I had to let them know who I was. The doors stayed locked and shut at all times. We were buzzed through and I saw the hand washing station for the first time. It was automated and the most bizarre thing AI had ever seen. I was amazed at the setup. We passed through another set of double doors and entered the NICU.

It was a large room divided into sections by walls and curtains. It was dark, yet warm and monitors could be heard beeping throughout. I knew my son was in that room somewhere but I didn't know where. I wanted to run to him. We turned another corner and there was a raised glass table with a blue light shining on it. The smallest baby I had ever seen was laying on the table on its belly, completely naked except for a diaper, hat, foam block out glasses and tons of wires attached to him. He looked alien.

I remember the nurse smiling at me and saying "so you must be mommy," it was the first time someone had used that term in reference to me. It felt weird to me, I certainly didn't feel like a "mommy." I stood up and met my son. I remember feeling an overwhelming urge to cry and tried my hardest not to. The smallest baby I had ever seen was my son. Sleeping, unaware I was there next to him. I just stood there for a minute, I had a hard time believing that was my baby. The nurse said something I will never forget. She looked at him and noticing my hesitation, she said "you can touch him."

I never thought I would need permission to touch my own child but those words were the sweetest words I'd ever heard. After being told no to everything the past few days, it was amazing to be granted permission for something, especially something so important.

I remember regretting sitting back down in the wheel chair and having to go back to my room for meds and rest. The short trip had taken a lot out of me and while I never wanted to leave his side, I knew I needed to rest just as much as he did.

The trip to and from the NICU would become routine in no time. We started parking in the same spot. The receptionist knew us by name and was excited for us when we finally left. Caiden's doctor knew what time to expect us and would stop by every day to give us an update personally. Day by day we watched the machines get turned down and eventually disappear.

I remember his doctor better than I remember the nurses. Dr. Craig Anderson. He is an amazing man. He was there whenever we needed him, he encouraged me to pump and breastfeed, he made it possible for Caiden to go home ahead of schedule. He was excited to see him again when we went back a month later to pick up my extra milk. I can't wait to see him again someday and say thank you. I never got the chance to say goodbye and thank him for all he did for us.

I may not have the best memory, but I remember what's important. I'm glad Caiden won't have any memory of his time in the NICU. I'm glad he'll grow up knowing he did something amazing as a baby. He survived. And each year on his birthday we will celebrate his life, not mourn the time we lost. Each year we will celebrate how far he's come. Each year we will move one step closer to normality and one step further from premature.


When I wrote this three years ago, I had no idea the problems we'd continue to face. I can't even begin to count how many times I've had to repeat his birth story to doctors and have to emphasize that he wasn't the sick one, I was. He was healthy for a preemie, I was the one who was dying. Its not fair that some of his struggles are likely due to his prematurity, but a majority of them can't be explained away by it. We may never know why he struggles, or why I got sick.

Hes not the child I imagined him to be when I was pregnant. I never expected him to have the medical issues that he does. I'm more proud of him today than I have ever been before. His struggles run deep, but he's overcome so much and is the happiest kid you'll ever meet. Today is a hard day for me. The day my guilt creeps back in. I don't know if I will ever forgive myself for the way his life started, or my horribly neglectful doctor for that matter. Caiden won't remember it though, he may never understand it, and that's all I can hope for. He shouldn't have to live in the shadow of his prematurity, and hopefully his development continues to progress at the rate it has been lately.

He's going to be four on Tuesday and starting school this fall. Its incredible how far he's come in the last few years. Its hard to imagine that he was once that little baby on the warming table attached to more wires and tubes than I knew was possible.

Neurogenetics Update!

On Tuesday, the 10th, Caiden had an appointment with Neurogenetics to meet the new neurologist (this is our third neuro) and follow up with the geneticist we saw about a year ago now.

Neurology

Dr. A, our previous neuro who we saw in December, was concerned about Caiden's most recent regression and ordered another MRI (which we had done the end of January). He wanted us to bring both to Dr. P, the new neuro for comparison. His most recent MRI showed changes from the first so there was some concern about what it might mean.

Both MRIs are being sent to radiology so that they can be looked over thoroughly before Dr. P formally diagnoses him with anything. We should hear from her by the end of next week, however she was able to look over them briefly and gave us her preliminary findings.

According to her, the problem with Caiden's brain is likely due to an injury at birth, and most likely not a degenerative condition (yay!). Developmental delays, hypotonia, and toe walking are common in preemies, and a brain injury could possibly explain these. It is clear that one side of his brain is more affected than the other as he has always favored his left side and both MRIs support this. His new MRI showed an asymmetry of one of his ventricles that was not present in the first MRI, along with white matter changes.

The way she explained it, is that the scar tissue caused by the birth injury surrounds the ventricles. As Caiden has gotten older, the brain has replaced some of that scar tissue with fluid. This makes the ventricles get bigger and the brain appear to be smaller, even though its only the scar tissue that's affected (this is pretty much an explanation of PVL, what Dr. A. suggested but never formally diagnosed). He also has excess fluid surrounding his brain in the space between his brain and skull. She doesn't believe this is what's making his head so huge, but its not growing significantly between measurements. As long as the fluid remains the same or lessens over time, and his pressure remains normal, we aren't looking at anything radical like surgery to reduce it.

Aside from going over his MRIs, she also did a full exam to check him out and noticed his hypotonia and toe walking immediately. She's encouraging us to continue all of his therapies and to talk to his physical therapist about whether or not he's going to need braces or special shoes to help with the toe walking. One of his hamstrings is tighter than the other and we don't want it to get any worse.

She also believes that while some of Caiden's issues are related to his birth and prematurity, it does not explain away all of his problems. She has recommended we pursue further genetic testing.

Genetics

Our geneticist, Dr. W, actually remembered Caiden even though we'd only seen him once before. We met with him after we saw Dr. P. He agrees and also thinks we should have more testing. We already know Caiden has a duplication on his 10th chromosome, but there's not much known about the specific gene. There are a few cases reported where it could be connected to speech problems, but there's not enough research about it to know if this is true in Caiden's case.

He suggested we do an Autism and Intellectual Disability Panel. It looks at 2,000 genes either known or suspected to be related to Autism and ID's. After this test, if we choose, we can do Whole Exome sequencing with looks at all 20,000 genes. We did decide to do the the Autism and ID Panel, but are waiting on whether or not to do the complete sequencing, so he is sending it to insurance for approval. Once its approved, Caiden will only need a simple blood draw, which he does fairly good with, and then we wait. Results can take several months to receive.

One of the things I love about Dr. W though, beside his amazing bedside manner, is he works closely with the medical research facility who will be looking at Caiden's DNA. He has an amazing track record and will actually be involved in the testing process. Should we find something with this test that is not well documented, we have the added bonus of him being able to research the affected gene(s), and hopefully coming up with an answer either now, or years down the road when more information is available. We're obviously hoping for the sooner the better, but we'll take what we can get.

Caiden is scheduled to go back to the Neurologist in a year unless we have further concerns or if she needs to see him regarding what she finds when looking over the MRIs more closely. We did not get a time frame from the geneticist about how long it would take to get the test approved, but hopefully it will be soon.

Caiden measured in at 3'8" and 46.5lbs!

Huge April Update!

As Autism Awareness month winds down, I figured now would be a good time to give a little update on Caiden, especially since we have some BIG news to share!

Caiden has made leaps and bounds in his development lately. He has almost met all of his short term goals for OT, such as drawing a circle and straight-ish lines. He has also been showing more signs of sensory seeking instead of avoiding. In PT, he has finally mastered catching a ball, and jumping, managing to get both feet clear off the floor! He is very proud of himself for this, as he should be ;) However, it is ST that he has shown the most progress in recently. Caiden now has more than FIFTY - yes, fifty! - words he can say!! These include "mommy" and "daddy" which he had not said in roughly a year!

While we are extremely excited about how much he's improved lately, we are still keeping a close eye on him. He is prone to regressions, so we're hoping that a lot of his new skills stick around for a while this time.

The developmental pedi gave me some paperwork on IEPs so we can get him enrolled in school this fall. He's going to need a one-on-one aide and still isn't potty trained, so we've got a lot of work ahead of us. I personally think he's going to have a rough few days once he first starts trying to get used to it, but I think after that, he's going to love being in school.

Because Caiden has done so well lately and is showing so much progress, the doctor decided that he doesn't need to go back to see her for a whole entire YEAR!! She still wants us to keep her updated and to go in if something comes up, but as long as he continues to do well, we only have to see her once a year.

Today he weighed in at roughly 45lbs (97th percentile) and is 3'7" (99th percentile) and........ he let them take his blood pressure!! Caiden has only tolerated having it taken ONE other time, and today he didn't really care, just got kinda wiggly. It was a perfect 100/60 too!

Our next big date is in just two weeks when we go back to neurogenetics and meet the new neurologist to go over his last MRI. Hopefully we'll continue to get good news!

A Very Special Santa

This morning, a local mall hosted a Sensitive Santa event. Open to kids with autism and other special needs, it took place before the mall officially opened for the day. The lights were down, there was no music playing over the speakers, and no shopping bags to trip over. There was a Christmas movie playing in one corner and a table filled with arts and crafts in another.

At the center, there was Santa. Sitting in his green suede chair in front of the largest Christmas tree I had ever seen, he exchanged kind words with brave boys and girls. I can imagine what they talked about; the new toys they wanted, and if his beard was real. Words and phrases Caiden may never say.

We knelt in an empty area, still close enough to see the Big Man, but not be in the way as we attempted to soothe Caiden out of a meltdown. We had gotten almost all the way to the check-in table when he lost it. I had tried desperately to hold back the tears as I gave the woman our name, failing miserably, it took several attempts to get an audible response out.

For fifteen minutes, we rubbed circles on his back, offered toys and snacks and to carry him, and try to protect his head while he writhed on the floor. He didn't want to leave, but he didn't want to be there either.

I cried some more, but I wasn't embarrassed. He had done so well last year, even been excited to see Santa, but the effects of his most recent regression were out in full force. He was going to miss out on something he had enjoyed because his diagnoses got in the way. It wasn't fair, it made me angry seeing just how much he had lost to his mysterious condition. He deserves a magical moment as well, especially with how hard this year has been on him, I wanted him to have that.

The woman who seemed to be running the event (I wish I'd gotten her name) pulled up videos on her phone to try and distract him. It didn't work unfortunately, but she was determined to help us.

He eventually noticed a few balloons on a shop sign and she allowed him to play with them. He immediately calmed down, even bouncing them back and forth between the two of them. Playing with a complete stranger, he was happy.

We tried again to approach Santa, but he simply wasn't having it and began to get upset so we backed off.

Then she hit us with it.

They were working on getting him more balloons. If we wanted to wait a few more minutes, we could lure him in front of the camera with them. Definitely worth a shot.

It worked.

He was still nervous, to the point that he crawled in front of Santa to get to the balloons, but he smiled. His face lit up and we were able to get a slightly candid, slightly staged picture of them. It was perfect. As quickly as he could, he ran past Santa to show daddy his balloons, but they'd captured an amazing moment.

Santa held his hand out to me and gave me a hug and pat on the back. He said Caiden was a great kid and we were doing awesome. I sobbed some more and went to pick out our pictures.

When Santa says you're doing a good job, you just can't help but believe it.

I expected him to have a hard time, but I wasn't prepared for just how difficult it would be for him, or how perfect his picture would come out despite the obstacles in getting it. Before we left however, I made sure I thanked the woman who went out of her way to get Caiden some balloons so we could have such a magical picture. I hugged her and we both cried together just watching how happy Caiden was with the balloons.

As we were walking away, I heard her say to the cameraman, "that's the reason why we do this."

And I'm so incredibly thankful there are people like her who do.

November Update

We have spent the last several months trying to get Caiden stable, and so it's been quite a while since I've updated. Not much is new, and so far, I have mostly good news to share.

Over the summer, Caiden went through a very rough patch behaviorally, and we made the difficult decision to start medicating.

Our first attempt was a low dose of Zoloft. It worked well for a couple weeks and then things got really bad. Caiden lost most of his speech and began having outbursts that were unusual, even for him. He regressed back to hitting and kicking, and the repetitive behaviors got a lot more severe. We were unsure if it was a result of the medication or if Caiden's condition was getting worse. We decided to try a different med in the hopes that that was the problem.

Currently, we are finishing up month three of Remeron and I cannot say enough good things about it. Soon after stopping the Zoloft, Caiden's speech returned (his doctor said she'd never seen it as a side effect before), and in the last month he's learned several new words and is vocalizing more than ever. His behavior is phenomenal, with the exception of a couple tantrums every now and then, but we can live with that. He is back to being his old happy self, just with more stable moods.

It doesn't appear that his condition is getting any worse right now, and we are incredibly thankful for that. His overall progress has plateaued a bit with the exception of his speech, so he is still roughly at the development of an 18 month old. Unfortunately though, he has been sick, a lot.

We've made several ER trips in the last two months which ended up being for simple problems such as an ear infection and inflamed intestines. Though his tiny vocabulary is growing, because of Caiden's lack of communicable speech, when something is wrong we have no way of knowing what or how severe it might be. The only way to know for sure, is to have him checked out by a doctor and begin ruling things out. It's a time consuming and more often than not, unpleasant process.

As far as diagnostics go, we're kind of in limbo right now. October marked a year since we received his Autism diagnosis, but we still have a lot of questions. He is scheduled to return to the neuro-genetics clinic the beginning of December and we will be discussing the possibility of having further testing done. He is stable right now, so we don't feel as if we need to press as hard for answers, however we are still as determined as ever to get them.

We are excitedly getting ready for Christmas. We've found that preparing for holidays early helps Caiden adjust to the change, so we've already broken out the Christmas movies. So far he's not too interested in them, but I'm hopeful he'll come around soon.

Seven Months

An open letter to our son's former pediatric neurologist.

Dear Dr. M.,

You probably don't remember us, after all, its been seven months since Caiden's last appointment with you. Seven months since we sat next to you and begged for you to listen to us. Seven months since you dismissed our concerns about absence seizures. Seven months since you threw two opposing, and impossible diagnoses at us. Seven months since you declared our son's atrophied brain didn't require a follow up, and that we'd be better off seeing a geneticist. Seven months that you have failed to return our phone calls.

Like I said, you probably don't remember us, and we won't be back for a follow up, so let me refresh your memory and show you why our story should be important to you.

We came to you after an abnormal brain MRI left our pediatrician (and us) seriously concerned about Caiden. We were just trying to rule out cerebral palsy, what we found was much worse and started us down a diagnostic rabbit hole.

His brain showed atrophy.

Had you taken more than the five minutes you spent skimming over his MRI, you would have seen the real damage, you would have seen the holes. You would have diagnosed him with cerebral palsy and periventricular leukomalacia. You would have saved us from months of heartache and financial strain.

But you didn't.

Instead, by your inaction, for seven months, you let us believe that Caiden's mysterious brain condition had the potential to be terminal after we'd ruled out all other possibilities. We may be young and still somewhat new parents, but even we know why they save those tests for last.

That's where you left us; waiting for the hammer to strike, waiting for a prognosis, and not necessarily a diagnosis. Waiting to find out if the atrophy was progressive, and how much longer we'd have with our son. For seven months, I was scared to put Caiden to bed, afraid he'd have passed in his sleep, afraid each day could be our last.

Trust me, its a terrible way to live.

Last week, however, our pain was finally lifted. We had an appointment with a Neuro-Genetics team who thoroughly examined his MRI and saw clearly what you missed. We're just waiting on a confirmation, and we can add those two diagnoses to his list, while we remove two of yours.

Two completely manageable, non-degenerative conditions. Under normal circumstances, they would have crumbled us, but instead, it was an incredible relief.

I don't know if you have children. I don't know how long you've been a pediatric neurologist. I don't really care. What I do care about though, is that you know that you failed us. In every way a doctor can fail their patient.

Not because you got a diagnosis wrong, but because you didn't care enough to try and get it right. You have to care about the people who come to you for help. If you don't, you leave them in positions like the one you left us. Thankfully, we had others who took our concern seriously, and friends and family to stand by us.

Our story turned out alright. Our son's conditions are not terminal. If they had been, and we trusted your judgement, would you want to live with the guilt that you did nothing? How many others have you failed the way you failed us? Can you live with that number?

Complicating the Typical

Yesterday we spent most of the day in the doctor's office with Caiden. Something that's not out of the ordinary for us, but why we were was a unique occurrence. Aside from his diagnoses, he is usually the picture of perfect health, but Caiden had woken up in the morning not acting like himself. We tried going to therapy, but he just cried. He wouldn't eat or drink anything, and just wanted to lay on the floor.

He couldn't tell us what was wrong, and not wanting to jump to conclusions, we called the doctor to see if she wanted to check him out.

While we waited for a call back, I attempted to take his temperature. Easier said than done. He fights it and moves so much its hard to get an accurate reading. Over the next hour and a half, I took it three times, and each time it was significantly higher than the last.

I called again and got an appointment for later that afternoon.

When we got in to see her, there wasn't anything obviously wrong with him other than the fever. On a whim she did a test for strep throat.

It came back positive.

A typical childhood illness made more complicated by the fact that not only can he not tell us what's wrong or where it hurts, but he has an extreme aversion to oral medication. Giving it to him means holding him down and forcing him to swallow while screaming. There is the very real risk he could inhale it and asphyxiate or choke. The typical treatment of strep of course being a week long course of antibiotics.

We had two options. Get a prescription for the normal treatment and force it down his throat everyday for a week, or just one injection of a more powerful, long acting antibiotic.

Unfortunately, we had to go with the injection. A single, very painful injection of a thick antibiotic formula into his thigh.

His screams were heartbreaking, and they continued well after they'd administered the injection until he finally fell asleep.

Today, he is thankfully feeling better. His fever is down and he's taking tentative bites of food. However, his leg is hurting him. He's refusing to put any weight on it and shakes when he tries. He's hardly left the couch since he woke up this morning, when he does, he cries.

It was a simple decision to make, and what was best for him in the long run, but I still feel bad that he's now hurting because of it.

Even simple everyday things are complicated. For a typical child, they'd be able to tell you where it hurts. You'd be able to look in their mouth without needing three other people. You'd get the regular medicine and not even realize that there are alternatives that even the doctor has to look up, and then get from another office entirely because they don't carry it. You surely wouldn't know their names or doses.

We do.

We have to do everything a little different. Sometimes that means therapy instead of play dates. Sometimes that means sign language and babbling. This time, it meant a painful leg for a day, instead of a week of fighting to get him to take medicine.

Tomorrow will be better.

A week and he'll be back at therapy.

A month from now and it'll just be another bump on the road.

He won't remember any of it, and for once, that's just how it should be.

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.

Family History

When I was 15 weeks pregnant, I walked out of my OB's office sobbing. We had just found out that the baby I was carrying, was a boy. I was ashamed to tell anyone about my reaction. He was healthy, so what did I have to be upset about, people would say. 

They didn't know shit.

For me, the news that I was having a son and not a tiara wearing princess, wasn't about gender preference, it was about genetics. And fear.

I grew up with an older half sister, and a younger brother. My sister was a few years older than me, and had a few physical problems, but nothing that made life too difficult. I remember her having to wear a back brace to bed at night for a while, but to me, she was no different than anyone else. I looked up to her, and until my mid-teens, aspired to be just like her. She was normal; popular among her group of friends, smart, and beautiful.

My younger brother, on the other hand, was about as far from normal as a kid could get. He was only 16 months younger than me, so everyone expected us to be great friends. We were anything but.

One of my earliest memories is of my brother's first psychotic break. We had both gone to school that day as usual, but on the bus ride home, he was absent. I thought nothing of it until I got home and found our mom in tears.

She confessed that he had had an episode while at school, and was away to get help because he was sick. My brother was gone for three days. I later learned that he had been placed in a children's psychiatric hospital, beds complete with restraints, after running away from school with a knife, after threatening to kill the principal and her family.

He was barely nine.

For years, I watched my mom struggle to control my brother. His outbursts became full on rages. The "people" in his head apparently grew louder and pushed him to do unspeakable things. Not too long after his first hospitalization, did he attempt to drown me in the neighborhood's public pool. On more than one occasion I watched as he tried to hurt our mom, or attempt to take his own life.

Our house was filled with drawings that didn't make sense; arrows pointing to corners, circles overlapping circles. They stayed taped to the same spots so long, when we finally moved the walls were whiter underneath.

My brother is 20 now, having just celebrated his birthday not too long ago. I haven't seen or spoken to any member of my family now, for almost a year, for unrelated reasons. At my last count, my brother had been committed somewhere around seven times, the last three falling closer together than the rest.

I never knew my brother's official diagnosis. Our mom never cared to share it with us, and I never thought to ask. I knew he scared me (and still scares me), and that was all that mattered at the time. The more I think about what he was like growing up, the more obvious it is what kind of condition he has.

My mother used to tell me that I'd make a great mom. I'd been the rock for our family, helping to raise my brother when her disabilities got in the way. I'd understood and withstood my brother's assaults, and still stood up for him to the bullies. I could handle him. If I ever had a child like him, I'd be prepared. I would know how to fight for him, how to care for him, how to stay strong.

As with many other things, my mom was wrong. Having a child like my brother was my biggest fear.

My own son, is as different from my brother as they are alike. I lived in fear of the unknown until he was born. His early arrival overshadowed every concern I had once had. He grew and as we left the confusing world of prematurity behind, I let my guard down.

Until his regression.

When Caiden lost his words at 18 months and started getting violent, my first thought was autism. My brother's illnesses were the last things on my mind.

Eight months later, we have few answers and dozens more questions. I find myself wondering if there's more going on in his head than we realize. Could his smaller brain size be affecting the delicate balance of his chemical levels? What if his extreme behaviours aren't from autism, but bi-polar disorder, or worse, something akin to my brother?

Over the last week, we've seen a behavioural regression. When we started therapy, his meltdowns all but disappeared. Now they're back with a vengeance and I find my heart aching for normalcy.

I watched my brother punch himself in the head and put holes in walls for years, and barely batted an eyelash as I attempted to restrain him, oftentimes getting injured in the process. With Caiden its different. Each time he falls into a meltdown, it feels like I'm drowning. There is something so fundamentally wrong about watching your child writhe on the floor, screaming to the point of choking, and being completely unable to so much as touch him.

Sure, I know how to fight for him. I know how to pester doctors into giving me the appointments and the tests I want. I don't always know how to handle a toddler who instills a fear I have never known before.

I fear he will hurt me one day. Even at just two years old, he's strong enough to now.

I fear he will follow the same path my poor brother did, and that his youth will be stained by hospitalizations.

I fear he will never get all the help he needs.

I fear we will never know what makes him so different.

I fear one day he'll regress so far that we'll lose him completely.

I don't always know how to stay strong for him. Sometimes his meltdowns include equal amounts of crying from the both of us.

What I do know, is how to love him. I love him like no mother has ever loved her child before. I have lived a hell other parents don't dare imagine. Each day, he breaks my heart, and each day, it is only he who can put it back together.

Sometimes, on the rougher days, you have to dig a little deeper to find your courage, to grasp your shield and face the lion again. I am not special for facing another day, another battle. I do it simply because I must, and to fail to do so, is to fail the one person who needs me the most.

The Cliff

There's a quote by Ray Bradbury that has cemented itself in my mind. Its one of those things that keeps coming back to you no matter how hard you try to forget it. I think I heard it in high school and I keep stumbling upon it now in my adult life. It goes, "Go to the cliff and jump off; build your wings on the way down." I always thought it was about taking risks and learning as you go, but recent events have made me really think about this idea and what it actually means.

Last month was a good month with Caiden. We have learned how to better prevent meltdowns and how to interpret what it is he's trying to communicate.  As a result, our home has been a much calmer place. It came with a few obstacles though.

Blood work. The developmental pediatrician we saw the end of June ordered a ton of blood work. Things like lead leavels and thyroid function only grazed the surface. We had been putting off getting him tested for the clotting disorder I have, because we were quite frankly afraid of the battle that would take place. Now with these new labs ordered we had no choice.

To our surprise, he actually did well. It only took four people to hold him down, and though he screamed bloody murder the entire time, he was calm as soon as he was allowed to get up. He even got a prize after!

We have most of the results back, and unsurprisingly so far most have been normal. We're still waiting on his chromosomal microarray (looking for deletions or duplications on each of his chromosomes) and fragile x (a genetic abnormality on the X chromosome). Aside from the clotting disorder (which he does have), the one blood test that was abnormal was something called CPK.

CPK stands for creatine phosphokinase. Its an enzyme that your body produces when the brain, heart or muscles are damaged. His levels were slightly elevated but for no clear reason. We were told not to worry about it, it could be nothing.

He had appointments to get his eyes and hearing tested. Both went well, his eye sight is perfect and his ears work just fine!

Then, on July 28th, we had possibly the most important appointment to date. His MRI. Because of his age, Caiden had to be sedated. Totally routine, but we were warned he may wake up a little... grumpy. And grumpy he was. He left quite the impression on the staff when even the morphine they gave him didn't calm him down after he woke up. Eventually he did calm down and we were able to go home, and wait for the results which were supposed to be available later that day.

We waited.

And waited.

And called the doctor.

And waited some more.

Then we got the news on Friday August 1st (for some reason I cant get around August being a bad month).

Global Cerebral Atrophy.

His entire brain is significantly smaller than it's supposed to be and isn't expected to catch up completely. It has either stopped/slowed in growth or shrank. And right now, they have no idea what caused it.

The brain naturally shrinks with age, but this kind of damage is something thats typically seen in people with alzheimers, traumatic brain injury or serious illnesses like MS, none of which he's had.

It puts him at risk for seizures, cerebral palsy, dementia, and aphasia (a condition that hinders you from being able to communicate)- something we're already seeing.

Prognosis varies depending on the cause, type and location of damage, but its a degenerative condition by nature. If his brain has stopped growing, he will likely be stuck at the development he's at now (a one year old). If its growing slowly, we need to get him as far developmentally as we can before his brain does stop growing. If its shrinking... he will continue to regress and the condition would be terminal.

He will need additional MRIs throughout the his life to monitor the growth/shrinkage and to determine what exactly is going on.

Its seemingly rare in children, especially since his entire brain is affected and not just one part, and he has no history of illness or injury. Hopefully, the remainder of the blood work will let us know if there's an underlying condition but for now... all we can do is push him in therapy and hope that his brain doesn't shrink but continues to grow.

"Go to the cliff and jump off..."

I feel like I've been pushed off that cliff, the fall totally out of my control. I'm still a bit in shock. It seems a bit unfair, after all we went through when he was first born, this information was devastating. We started this crazy journey expecting to hear that Caiden has autism. Instead, we found out he has a potentially terminal brain condition. Even if its not terminal for him, he won't be "normal" like you and I. He is considered disabled and as having special needs. He has unexplained brain damage. Hopefully, with enough therapy, he'll be able to lead a relatively normal life though.

"...build your wings on the way down."

No matter what the future holds for him, he will always be my baby. I don't love him any different than I did before we got the news, and that wont change as we figure out more of whats happening in his body. We will take what comes and learn from it, grow from it, and encourage others to do the same.

Caiden has always had the ability to put a smile on the faces of the people who meet him. He is a happy little boy with a beautifully contagious laugh. He is in essence no different from other two year old boys, he plays with cars, balls and sticks and has an uncanny ability to accumulate dirt. His brain is just a little different, a bit more baby-like than it is toddler.

He deserves love, understanding, and complete acceptance of the person he is and will become.

Therapy

One of my biggest dreams is to see my son kick a ball; see him pick up a fork and feed himself; see him walk without stumbling or falling; hear him say "I love you" or even his name, or a number... a letter... a color...

Caiden can't do any of those things. He's like a one year old, stuck in a body the size of a three year old. But, he's only two.

I hope that one day he'll resemble whats considered "normal" but I'm not deluded. I very well know he may never do those things. He may never play with other kids, or get out of diapers. He may never get a job, or live on his own. He may never be able to tell me he's hungry, or tired.

If he doesn't, I'm prepared for that. Well... probably not, but I know its a possibility and accepting it now will only help later on. I'm not going to give up on trying to teach him those things though.

Most importantly, I want him to grow up and be happy.

He begins therapy in just over a week, so that one day he might be able to do things other kids do. So he can function without getting overwhelmed and exploding. Unfortunately there was a problem getting him started with speech therapy, so that will take a bit longer. I'll probably see him kick a ball long before he says his first sentence.

But, as a special needs parent, you quickly find out thats perfectly fine. Progress, no matter how small or seemingly insignificant is something to be celebrated.

Right now, I'm not worried about how quickly he'll pick up these new skills. I'm worried if he'll even get the chance to try.

We dont have a way for him to get to a majority of his therapy and various doctors appointments. Our family only has one car, used by my husband to get to work everyday. Unfortunately, he works long hours to provide for us since Caidens needs are such that I'm unable to work.

We need a second car. Solely for Caidens transportation.

Herein lies the problem. We are only in our 20s. We cant finance a car because we have no credit... and we cant build our credit... because we have no credit. We're stuck in that stupid loop.

We started a fundraising page to help us pay for one.

We aren't asking for 20k for a brand new car. We just need something safe and reliable to get Caiden to therapy. The reality is, if we don't find some way to purchase a second car and soon, Caiden may only get a tiny fraction of the therapy he needs because we just wont be able to get him there.

I feel like if it were for a service dog, we'd have gotten at least a little help by now, but we haven't raised a penny. Without this therapy, we wont even know if he'd benefit from a service dog.

It saddens me, that despite everything he's faced and overcome already, he's being held back by this. If my husband worked night shift, or if Caiden were able to be left with a sitter, it would be a different story. However this is what we're dealing with.

We need your help.

Therapy is Caidens ONLY chance of having a normal life. Could you imagine your child starting kindergarten and not being able to speak or feed themselves? Without therapy, that will definitely be Caidens near future.

Even if you can't donate, we are asking that you please share his page and hopefully with enough traffic and people seeing/sharing, we can reach those who can. Every dollar, every penny even, is appreciated and gets Caiden that much closer to therapy.

Gofundme.com/a-car-for-caiden

Happy Birthday!

Caiden turned the big TWO yesterday! To celebrate we went to my mother-in-laws and had a tiny party for him. We originally were going to take him to the zoo but it was too hot. Instead we got him a cute little cake and he got to open presents and play out side. We were nervous how he would do transitioning but he surprised us!

He was afraid of everyone singing happy birthday and wouldn't even touch the cake to take a bite, but in the end I was glad not to have to deal with a sugar rush/crash. After cake and presents we took him outside to play with the water hose. I expected him to freak out, which he did, but once he realized he could splash in the bucket we had pulled out, he had a blast! At the end of the day he was soaked and thoroughly exhausted.

He certainly had no idea what was going on but overall I think he had fun, so it was a good day.

Unfortunately, as fun as his birthday ended up being, it was overshadowed by a sobering reality.

Thursday was Caidens evaluation with the developmental pediatrician. I was nervous that when we got there he would behave differently, like he does in each new environment. And I was right.

Caiden, while he gave the nurse taking his measurements a hard time, he loved the doctor. He was even throwing a ball they had in the room back and forth with her. She explained that he has all the traits to diagnose him with autism, but his eye contact was too good. She wants to see him in another few months to reevaluate him to see if anything changes.

However, though we dont have an official diagnosis yet, we did get a few answers.

Caiden has something called hypotonia. Basically, he has low muscle tone and the muscle he has is weak. This is why he still cant kick a ball, crawls down steps and has trouble feeding himself. The good news is that it can be improved with physical therapy. The bad news is, its likely caused by cerebral palsy.

Cerebral palsy is pretty common among preemies and is caused by trauma to the brain. Most preemies are scanned for brain bleeds shortly after birth due to the trauma the birthing process can due to an underdeveloped baby. Since he was born past the cut off date at our hospital he was never checked for them. He now needs an MRI to confirm or rule it out.

On top of that, he has a severe developmental delay. Though he's now two years old, his development is equal to that of a 12-14 month old. We knew he was behind since he's nonverbal, but just how far behind he is was a huge blow.

Even more surprising was what the doctor believes is responsible for his delay: fragile x syndrome.

Fragile X syndrome is "the most commonly inherited form of mental retardation." Its caused by a mutation on the X chromosome and is seen predominantly in males. Its characterized by problems such as developmental delays, behavioural and socual issues, hand flapping, and hyperactivity. Those with the full mutation tend to have very distinct facial features including a long face, protruding ears, prominent forehead and chin, and a large head.

Caiden has a seriously large head. It measures 52.2cm and is above the 100th percentile for a three year old, never mind a two year old. His ears are set lower than normal, and he has a large forehead. If you google image search fragile x there is a picture of a boy, probably 3-4 years of age, and if you can get past the obvious differences (like age and hair color) Caiden bears a striking resemblance. Caiden could be the poster child of this syndrome and it hasn't even been confirmed yet whether or not he has it.

If the test comes back negative, my husband and I have already agreed to have it run a second time. There's no way, after looking at all the evidence, that he doesn't have it.

Along with genetic testing and the MRI, the doctor ordered a heap of other tests along with physical, occupational and speech therapy. We are waiting on referrals and appointment confirmations, so we should finally have answers soon.

Since we found out about these problems, we have told friends and family, and though most are behind us and will support him no matter what, some are hesitant. We've heard "I'll pray for him" countless times. Its not a matter of religion, but it insinuates that he's broken and needs divine intervention to be "normal". This is one of the most horrible things anyone could ever say.

Caiden was born this way. Even if we could change him so that he was "normal" like everyone else, we wouldn't. Yes we want him to be able to speak to us and play with other kids, but whatever is "wrong" with him makes him who he is. If you were to take away his delay overnight, he wouldn't be Caiden in the morning.

We don't believe that a disability is the end of the world, its the beginning of an entirely new one.

"God is in the rain."

If you do an internet search for this quote (made popular by the movie V for Vendetta starring Natalie Portman and Hugo Weaving) one of the first things to pop up is that it means "challenge perfects the human soul."

I'm a true Aquarius. When it rains, if I can't make it outside to stand in it, I throw open every window, sit by the sill and watch it pour.

Today it is storming. In more ways than one. If challenge perfects the human soul the way a stone is shaped in a river or a canyon erroded by rain, then my soul should be damn close to perfection.

In honor of Memorial Day, here in the US, my husband had the day off from work. I got to sleep in and take a shower at 11am. My husband was going to nap while Caiden did, but Caiden had other plans. Neither one have napped yet today.

On days that hubby is home, I get Caiden out of his room and take him to sit on our bed to say hi to daddy after his nap. For whatever reason, Caiden didn't want to today and he was thrown into a meltdown.

His most severe one to date.

It lasted about 20 minutes, short as far as meltdowns go, but it was severe. Screaming, thrashing, choking for air, biting, and hitting. The whole shebang. I didn't think it would ever end. It was also the first meltdown of this magnitude that my husband had seen.

He's a great father, he and Caiden love each other to pieces and have an amazing bond. However, he struggles to grasp the difference between terrible twos behavior and autistic behavior, and it frustrates him. For this reason, along with being a stay at home mom, I manage the tantrums, and the meltdowns, and pretty much anything that could induce stress. And I'm happy to do so. I don't always know how to help Caiden, but I have more success than anyone else. He needs me to be there in those moments.

I guess my ability to get through stressors unflustered, is why I started graying just before I hit my 20s, when my grandmother didn't until her 60s.

It stopped raining about a half hour ago and while Caiden is still edgy, I feel calm. If only it could rain on each of his bad days, it would be easier to shake the exhaustion that follows them. There's something calming about watching how the raindrops fall.

We're currently watching his favorite Bubble Guppies dvd. Hell, we might watch the whole thing. Twice, if it means him staying calm. This will be our challenge today. And possibly tomorrow, and each day for the rest of our lives.

Caiden is shaping who we are. He is holding our hearts and he has the power to stomp on them, or hold them tight against his own. He will show us our breaking points, push us past them and force us to build new ones. He will be the rain that threatens to drown us, and the life jacket that saves us.

And when my time comes, if after all this, I don't have a perfect soul, I'm demanding a refund.