Monday, 29 October 2018

Autism On The Road

I cannot believe that I am sitting here after the whirlwind of the last 36 hours choosing to write.  I had forgotten how therapeutic it can be, and how much it can help me process things.  Not to mention, it's an easy way to update all of you at once.

I took Nate to a new specialist today.  The doctor is a 5 hour drive from us, so we went down yesterday and stayed in a hotel last night so that we would be "rested".  HA!  So Nate went to bed at 5:30 this evening.  Why? Because he woke for the day at 12:30 AM.  It may have had something to do with the woman in the adjoining room who was shouting into her phone about "brick red" vs "plain red" shirts so loudly that I started silent screaming back "go for brick red and SHUT UP".  Either way, she got hers, since Nate was up loudly stimming for the rest of the night.  I would feel bad but....I don't.  She got a few hours of my life.  You're welcome.  Hotel rooms and autism honestly just do not mix. I had forgotten.  People go there to rest and sleep.  Two things kids with autism and their parents just don't do.  So that was fun.

Welcome to autism on the road.  You think you have it down.  You know how to handle your child's idiosyncrasies.  And you do- at home, in their environment, even running errands.  Packing for a trip when your child has autism is kind of like packing when you have a newborn.  I found myself wondering if bringing a yoga ball would be excessive- hint, it wouldn't have been, and I regret not bringing it.  I find myself wishing I could straight cath myself in the car because taking my son out of the car and into a bathroom and then returning to the car could cause world war 3.  It's no different than grocery shopping really.  If I take Nate, I have to be uber organized- returning to an aisle for a second time is a trigger- we are not moving "forward" and he can't handle that.  Leaving the car and getting back in is a no-no.  When I was finally at bursting and decided the meltdown would be worth it, I let him pick out a bag of Cheetos and go to town just so I could relieve myself.  Did it stop the meltdown from happening?  NO.  But it was worth a shot.  This eventually led to Nate slapping me about 10 times in the hotel lobby when we arrived because we were in another new setting and we had gotten out of the car AGAIN and clearly were not home.  And then him trying to kick me in the face when I took off his shoes in our unfamiliar hotel room.  Dinner?  Well crap.  There is no going out to get dinner.  Are you suggesting we leave the hotel room, get in the car, drive to another new setting, get out of the car, eat, get back into the car and then drive back to the place that is not home?  I don't think so!!!! The silver lining is that Panera delivers in Virginia.  Praise God.  However the presentation of pajamas at bedtime led to another meltdown because it was confirmation that we were not going home.  He eventually passed out on top of me after crying himself to sleep.

He's still pretty cute, even after all of that
I was super ready to get to the doctor this morning and get it over with.  Nate looked like he was dancing out of the hotel he was so happy we were leaving.  Victory!  So you can imagine his response when we pulled up to yet another place that wasn't home, and to top it off, a medical office.  More hitting of mom, a couple of bites to his wrist in the lobby.  The staff was great, but here's where I get serious for a moment.  This doctor sees autism patients and offers a very holistic approach.  For this portion of her practice she doesn't take insurance and she spends hours with each patient.  She continues to function as a general pediatrician as well.  So in the waiting room were....typical children and parents.  Infants.  Kids getting routine strep tests and chatting with their parents.  And me and Godzilla.  I was listening to a mom complain to her husband about their baby's sleep.  I was listening to a mom tell her child to cough during the strep test so she wouldn't gag.  And I will be honest- I wanted to strangle these parents.  I wanted to scream at them and let them know how good they have it.  I wanted to tell them to shut the hell up.  I don't normally have this urge.  I feel jealous.  I always feel jealous.  When I see posts from friends about their typically developing kids' accomplishments, it frequently makes me cry.  I'm not going to lie.  But today...
Today I had sat in my car at this doctor's office for 20 minutes before going in.  Sobbing.  I couldn't get a handle on my emotions.  I didn't want to take him in.  I didn't want the same old song and dance of "do this" and "try that" that leaves me feeling completely overwhelmed and hopeless.  I didn't want to go into this office, knowing that this doctor has a fabulous reputation, and lose hope yet again.  Because I didn't feel like there would be anywhere left to go.  This morning I had the feeling that I no longer have the strength to stay on this roller coaster.  It was one thing when Nate was "just" developmentally delayed.  But aggression and self-harm, constant tantruming, and the feeling that his life is just torture for him?  This is the most emotionally exhausting, and honestly damaging thing that I have ever been through.  If I went in to yet another office and felt like they were clueless?  I felt like I was almost ready to give up.  And I couldn't face that. 
But I'm a mom.  So too bad, right ladies?  I got Nate out of the car (he threw himself on the ground for the record).  I went in- to typical baby and child la-la land.  And I felt like if I saw another typically developing child today I was going to pull my hair out. 
They took us to the way back room (we are always taken to the way back room, so his screams won't be heard by as many people).  And the nutritionist and doctor came in.  These women were like an old married couple, communicating without words, just looks- "hey does that remind you of that case...?" "yeah, he needed this, maybe Nate needs that too".  They noticed on our paperwork that Nate is down to about 6 foods.  They noticed the deficiencies and imbalances in his lab work.  Which by the way, almost all kids with autism have.  Normally this is the point where I am told that I need to change Nate's diet completely (which I already did 6 years ago with little effect) and add about 30 oral supplements to a sippy cup of juice that I am supposed to magically get him to drink.  Tada!  I knew today was different when they said to me, "well clearly with how much he is restricting, oral options are out right now". 
Gasp.  Are you suggesting that you don't want me to be a super human magical medication administrator anymore?  That I don't need to find a way to Houdini these meds into my child when even the nurses at Sheppard Pratt had to admit defeat?  We talked about other routes of administration, about prioritizing and diagnosing the main problems.  They had ideas.  Realistic and practical ones.  The doctor acknowledged that it would be futile to try oral supplements because there would be no way of knowing if he received a therapeutic dose in his current state.  I have been saying this FOR.EV.ER. 
They agreed that PANDAS seemed likely although it is difficult to tell if he has all of the symptoms because of his limited communication. I explained his temporary improvements and relapses and the doctor asked how he was getting his antibiotics over the summer.  ORALLY.  And did he always take them?  Of course not!  By the time we left the hospital in fact, he had mastered "fake sipping" and it took me a full month just to get him to take his sleep medications effectively again.  The doctor said it was time to nip the oral component in the bud and give him an injection of antibiotics.  And she did.  And if we see change, she is recommending we do this monthly for several months, while adding an antifungal (which he actually will take orally).  There are several other things that we will be starting and trying.  All things that we can actually DO for Nathan even if he won't swallow most medications.  It sounded like a plan.
He still got them though.  They may know autism better than most, but he still got them.  They wanted to move him to another room for the injection because they didn't want him to associate the back room with pain.  I gritted my teeth and said that I really thought it would be fine, but they insisted.  Yeah- they did the grocery store thing.  We left a room and did not exit the building- BIG MISTAKE.  No, he was not crying about the needle (he honestly doesn't mind them that much), but transitioning him unnecessarily is just never the right approach.  We got through it, and I'm pretty sure they'll never suggest that again.
As a side note, because I think it's important for people to understand- this awesome appointment with someone who listens?  Was $1200 out of pocket.  And that is the norm.  That is what autism parents are expected to do.  That is the only way.  After 7 years of this I am just being honest.  These doctors who are willing to examine every angle of the issue?  They don't take insurance.  It sucks.  But I held out as long as I could, I went to "discounted" private practitioners, or the unicorn who did take insurance (he retired).  With Nate in his current state, I am done economizing.  Sometimes you have to bite the bullet- and apply for lots and lots of grants. 
Nate literally laughed most of the way home.  See this joyful child?
Five hours in the car and not a peep!  I know what your burning question is and no I did not stop for the bathroom.  Not pressing my luck.  We pulled in at home and he giggled.  I thought we were in the clear.  Jack and his dad were there waiting.  And they witnessed the epic meltdown that he had the minute he walked in the door.  It was like he was holding it in as long as he possibly could and then as soon as it was "safe", wham!  He cried and screamed and kicked and hit, and bit for nearly 40 minutes.  Until he fell asleep.
I feel like I've been run over by a mac truck. 
But it was a good trip.

Friday, 19 October 2018

Believe Me

Believe me

It sounds so simple doesn’t it?

I have been my child’s mother, his primary caregiver, and his main means of communication for nearly 9 years.  I know every inch of him; I know what he needs most times before he ever says it.  I know when he is upset, I know when he needs space, I know when he needs to be held and cuddled.

And I know when things have changed.

I know when my baby is not my baby anymore.  I know when he is hurting.  I know when he is on the edge of losing it.  I know when it is coming.  And I know what is coming.

So why do I have to convince every single person involved in Nathan’s care and life that things really are as bad as I say they are?  Why must I produce pictures, or video, or god forbid wait for them to witness things for themselves before I am taken seriously?
Had he ever hurt me before?  NO

Did I ever report self-harm before? NO

Did I ever tell you he would eat nothing at all before?  NO 

Did I EVER tell you that I was becoming afraid of the love of my life?  Absolutely not.

I just don’t understand why it is that when I explain these drastic changes to his therapists, his medical providers, his teachers, his bus drivers, and yes even our friends and family, they smile, nod, and declare they love him, they have “a place for him” and they can handle it. 

Because I call bull shit.

If I go through the experience of someone looking at me with that “oh” expression on their face when they finally see what we have been going through one more time I may lose my mind. 

Did they think I was lying?  Exaggerating?  Looking for attention? 

I don’t want attention for me or for him, I want my son back.  I need someone to carry this ball with me instead of playing a constant game of keep away.  I need a practitioner to look at Nate and say ok, I see him, I see the problem, we are going to get to work on this, and here is how. 
I don’t need anyone to tell me that autism cannot be medicated.  He is almost 9.  He was on nothing before this summer.  I do not want to medicate his autism.  I want to keep him safe from himself.  I want him to be comfortable enough in his own skin that he doesn’t feel the need to bite himself when he is upset. 

I don’t need anyone to tell me that he has gut issues.  I concur.  And guess what? This fiasco started after I attempted to address these issues with a supposedly amazing probiotic.  For us it was most certainly not amazing.  And until a professional looks at him and tells me what they think will be safe, I am not rocking this boat. 

I don’t need anyone to tell me that he is having anxiety.  I KNOW.  We have matching anxiety at this point.  I can feel it radiating off of him almost constantly.

And please do not tell me that now that you understand his behaviors (after one episode)  you know how to manage them and everything will be fine.  Because his behaviors change every day, and then he has none for weeks, and then he has the worst episode he has had in 3 months (like yesterday). 

You are not the one who puts your child on the bus with tears in your eyes several mornings a week.  You are not the one who meets the afternoon bus and is asked to come pull your child out of his seat because they are afraid to touch him.  You are not the one who keeps your phone volume on at all times just in case.  You are not the one who made the gut-wrenching decision to put your child in the hospital only to be told by the staff that he gave them “baby fever” (aka why the hell is he even here, could you belittle our situation anymore??) and have him sent home in the same boat he went in on 6 weeks later.  You are not the one who faces friends and family with hopeful looks on their faces, asking how things are going.  You are not the one who opts to keep your mouth shut, because you don’t want their hearts to break too. 

Things are the same.  Or maybe worse.  I am becoming numb.  I am doing my best.  And I am not making any of this up.

Believe me.  I wish I was.