Frustration

B-man is supposed to see his developmental neurologist at Children's every 6 months.  He saw her in the Spring.  Ryan tried to make his next 6 month appointment at the end of that appointment but her schedule wasn't "open that far in advance".  So, I'm supposed remember to call and get an appointment when it gets close to 6 months.  The first problem is that I never remember.  Then when I do it's impossibly hard to get a hold of anyone.  If anyone from Children's is reading this: your new online/app system does not work.  It says that email requests for appointments will be handled in 24 hours.  I have yet to have my email request even handled.  I end up having to call someone. I hate calling people. Thankfully, Dr. Golla has moved from the general neurology clinic to the Center for Autism & Development Disabilities. CADD is not as busy as general neurology and I was able to get someone on the phone with the first call.  When you call general neurology, you get a voice mailbox which warns you not to leave a second message because you'll just be slowing things down.  Anyway, I got someone on the phone and was told Dr. Golla could see B-man in May.  MAY!?! That's a year between appointments.  I point out that he's supposed to be seen every 6 months.  We get a consolation prize - an appointment with a nurse practitioner.  I thought this would be ok because usually, the doctor pokes in or is around. I. was. wrong.

Facepalm designed by Edward Boatmanfrom the Noun Project

When we arrived at the CADD, the waiting room was empty.  Definitely different from general neurology.   We are taking back fairly quickly.  Also different.  We have to answer the now standard Ebola questions.  The medical assistant balked when I answer that yes B-man has had a fever and has thrown up lately.  His allergies are messed up.  His sinuses are draining and that causes him to throw up.  He coughs.  She asks if he will wear a mask.  I say maybe then I put one on too so B will keep his on.

When the NP comes in, she is a cheerful older lady.  Brennan doesn't want to answer her questions at first but then warms to her.  She has print outs.  One form to sign to ask the school to send his latest ARD paperwork.  The rest presumably his records.  She writes on them.  The computer is unused in the corner.  She asks about his sleeping habits.  She says some kids, more severely autistic kids,  take a medication to help them stay asleep.  I can't remember the name of the medicine.  It's not written on his check out paperwork.  She asks about school.  All standard stuff.  Do we have any questions?

Ummm yes we do! What about his past MRIs showing 'spots'?  Do we need to do another MRI to check on the spots?  It's been a year since his last MRI, are we the only one concerned with these spots.  Yes, yes we are.  She has no idea about the MRIs.  She'll have to ask Dr. Golla. She'll get back to us.

I ask, can you show my husband his MRI scans on the computer? He hasn't seen them.  She tries.  She shows us scans that don't look like the ones I remember seeing.  She doesn't understand my concern.  I can very clearly remember sitting in the room at the general neurology clinic with an intern looking at the first MRI and the second side by side.  Those pictures are done in slices.  They start at his chin and build up.  I very clearly remember seeing parenthesis shaped blank spaces on those films.  The ones we saw today don't look like those.

So either I remember incorrectly or we saw the wrong films.  I don't know what to think.  What I do know is that today was a waste.  The whole point of having a doctor is that someone knows you.  That you continuation of care.  Today we saw someone who had no idea who Brennan is or what our concerns are.  For that matter, I don't know that Dr. Golla does either.  But the problem is that there are very few developmental neurologists.  You kinda take what you get.  At this point, I don't if we need a developmental neurologist.  I need someone to look at B's brain scans and tell us about them.  What I do know is that I am frustrated.

Spreading our wings

Bman is a wanderer.  He will disappear in the blink of an eye.  As you might imagine, this makes for lots of anxiety for this momma.  He needs to be within an arms reach at all times.

Last week we spread our wings a little.  On Monday, we all went to the State Fair of Texas.  We had never been all 5 of us together.  It was a great day.  The boys loved the rides and food.  It was just the 5 of us hanging out all day.  The boys (Ryan included) teamed up to win a giant Scooby-Doo.  I don't think I've ever seen a bigger smile from Bman.  Not only getting what he wanted but knowing that he broke two of the plates that helped earn Scooby.

SB's game Thursday was away.  It was actually at a field we've played at in our select football days.  SB played tournaments there.  Always in December and always cold and rainy.  Bman had never been to the field because he's gotten to stay in from the weather.

Usually, he stays in the stands and plays with whatever toys are in his bag.  He did that for a little while but then he asked if he could go downstairs and play with the other kids.  One of my students, and a good friend of Sam's, was down there with some of the younger kids.  I asked if she could keep an eye on Bman.  She said she would.  I let him go down to play. We did have a minor discussion about taking his backpack full of Skylanders down but he eventually went down without them.

He played, Ryan and I watched the game and took turns playing "Do you see B?"  He survived.  He did get lost.  He played well. Sometimes playing with the other kids, sometimes alongside them.  But the point is that he was out of my reach.  And we both survived.

We're both growing.

The only constant...

is change.  I've heard this a million times. I've said it a million times.  But I'm living it. Actually, we are all living it but things are changing around here.

As you know, I'm a momma of 3 boys, one of them an autistic 6 year old - Bman.  Lately I have had a tug on my heart for other mommas of autistic kiddos.  I want to be a resource for families.  I've had mommas come alongside me and love me.  I want to do the same for mommas of autistic kiddos.  I want them to know that they are not alone and that they are loved.  I'm not an expert but I am living smack in the middle of autism and I know how to love.

I don't know what this will end up looking like.  I am working on writing a Bible study for MAKs (Mommas of Autistic Kiddos).  I really don't know where to start.   But what I do know a couple of things 1. I love to write (and I think I'm okay at it ;).  2. people love to hear Bman stories.

So, that's where I'm starting.  I'm going to tell our stories - good, bad and indifferent.  I'm going to focus on our part of the story, not his school's part, not anyone else's part.  It's our life and our story.

I don't want to make this a place to complain or gripe.  I want to make this a place to tell our story, reflect on what we've learned, what we can do better and offer a support to other families.

Please join me in praying for God's direction in this endeavor.  Pray that he will guide my steps and to be of service to Him and families dealing with autism.

And if you know of any MAKs, send them my way!