Change.

I don't seem to handle change well lately. Before Christmas, Grace's longtime therapist, Heather, left the agency she worked for. I said before losing someone who works so well and so long with your child is like losing a family member. It's now in the hands of the school district to put a 1:1 "para" to be with Grace. We also don't know if she will be able to get therapist services as she has in the past. They were denied due to a misunderstanding of her epilepsy and now we have to appeal in order to get them reinstated.

So right now we are in limbo, of sorts.

Last week was like the first week of kindergarten for me because I knew Heather would not be there for my girl. I experienced panic attacks like I haven't in years. I still am. The holiday was hard for me.

Even a holiday trip to Biltmore Estate in Asheville couldn't lift my spirit for Christmas.

She did very well during our trip. It was after that with all the Christmas excitement when we started to have some issues. She was so excited for presents( a new word for her) and Santa that we got overstimulated. I am starting to feel a little autistic myself when I am in loud crowds so I am starting to understand a little bit more.

She was so exited Christmas Day! 

She just is sooooo aware now! 

But after all the holiday hoopla I felt I needed to distance myself from her on Sunday. She had hit me and I got upset and doesn't she come up behind me and   say Mama in a real sweet voice like she is trying to comfort me( I really think she was trying to talk me into wearing a dress  but it felt like she was trying to console me.) 

It's so hard to figure out what goes on in that head. That's why it's so important to have people who understand who she is and how she works. So if you are reading this please pray that God sends us another angel. 

Don't misunderstand -- she already has angels that are with her at school--but we need the someone who is going to be   with her to A: want to be with her and B: stay with her for a while. 

Autism -Yay! Part?

This conversation was with Grace's Behavioral Councilor right before I picked her up at school.

This was why that conversation took place. Somehow Grace is missing half of her left eyebrow!!😵😳!!

How this happened we will never know.

Suites and Treats

This year we were invited to the Iron Pigs Suites and Treats through Miracle League. Area buisnesses decorate the viewing suites at the stadium and provide food and treats for special needs kids and their families. 

It was a very impressive set up. Rooms were decked out in different themes: pirates, superheroes, pixar's Inside Out and Up

Undersea, Star Wars etc. One room that Gracie likes was decked out as a campsite complete with a fire and s'mores. The folks from these places  put in a lot of time and effort for these kids and it really shows.

Joy really liked the Peeps mascot!

It was a little overwhelming for Grace but she caught on quickly. Her new favorite thing is getting her face painted. Something tells me that I'm going to have to get into face painting soon.

Then after all the good treats that were handed out - what was Gracie's favorite thing?...

A paper plate she snagged at the pizza station.  You gotta love it! She's one of a kind!

February in October

I'm You know how they have Christmas in July sales and events? Well, I am having February, my most hated month, in October and I don't like it at all. 

First there was this:

 

Joy was home sick most of this week. Sick and sick at heart- in the middle of middle school muck that mom can't fix.

Then there was this :

I called called to school on Thursday because Gracie threw up. She NEVER throws up so I knew it was going to be bad. Twice at school, 3-4 times at home- and then she asked to eat( takes after her father- ugh) then she did it again. 

So we took her to a GI doctor on Friday even though she was still feeling funny but she did great and the dr was awesome! He actually DID SOMETHING For her. She has to get a CT scan but he's ordering a SEDATED one so we don't have to do it twice!!! He gets it. 

He acknowledged that she was different and that it was ok. Not one of the 4 Drs we were to in the last four weeks did that. It's so nice to find someone who actually gets that you are there for a reason.

Then there's this:

SPOILER ALERT: the following may be disturbing to some viewers: ( don't say I didn't warn you !!)

I told you not to look. 

I woke up at 1:30 to Chris yelling for help. He went up to bed with a queasy stomach and he must have passed out and hit his head somehow. He said that his head and neck hurt so I took him to the ER while Aunt Peewee came over to stay with the girls. We were there for about 3 hours. At one point he started to pass out again and it got a little scary because 3 people came in. Then about 20 minutes later when he had just calmed down they came in and said ok all the tests came back ok - you can go. Now. Right now. So we went home.and he got sick on the way home. Arghhhhhh!! 

So he spent the day in bed -- thinks he's going to Pittsburgh tomorrow/ yeah right.  We probably won't even make it up to pappy Angelo's tomorrow. 

So I'm done with October. 

Bring on the Christmas!!!!!

Stressed Out

 

From Twenty-one Pilots song "Stressed Out"

Wish we could turn back time

To the good old days

When our momma sang us to sleep

Now we're stressed out"

Above you see Grace having a meltdown in the car while we were waiting for my Mac to get fixed at the Apple Store. We had been in the book store until Grace decided that she wanted an expensive pop up book that was in Spanish no less. She had to have that book and no other . 

Tears- throwing herself down- crying- 

This has been the norm since August when we started seizure Meds. Then when school started it continued and got worse. Not has bad as when she first was on Keppra before school. She was really not herself on that drug!!

She has three new factors that seemed to have thrown her upside down .

First the medicine; Second, full days at school; Third , stress ( from going to so many doctors, being in school etc.)

We thought we had a Great Leap Forward after completing Chew School. Since the epilepsy diagnosis it seems we've taken two steps back. Some days are really good but the bad ones are really bad.

I know some of the behaviors are just childish tantrums- but I think the face above has pain in it. 

But I don't know- because she can't tell me what is the matter. With the new Meds she can't say "this makes me feel funny. " "I don't feel good." "My tummy hurts."

It seems like she has to deal with so much already. I'm gonna say it:

It's not fair that she can't talk. 

In the words of Malka Bialystoker from the book "the Ice Cream 

Queen Of Orchard Street" ( a great read btw) " So sue me, darling"

Sad Face.

It's been a rough couple of weeks. 

Today I hit the Oreos before noon. 

---

Today was the second visit to the new pediatrician in 2 weeks. That would make it the 4th Doctor visit along with an ER visit and an x-Ray-- in 2 1/2 weeks.

--

This is me today -- after Grace silently trashed the living room-- while I was looking up new pediatricians in the kitchen. Here is a closer look at the aftermath of Hurricane Grace

If u don't want all the gory details skip to the end😖

It started as a possible Urinary infection because of 2 accidents at school( Grace never had accidents)- so I took her to 

Patient First and they gave an antibiotic. Then the following day/ I misunderstood her neurologist and took her to her old pediatrician - who did nothing. Then I got her into a new pediatrician that the neurologist recommended where she had  more accidents who did nothing but clean her ears. So now we have three urine tests that show "something" and all get sent off for cultures that show "nothing". I kept her home the second  Monday in a row because I thought she had a temp. She went to go and was doubled up in pain crying - she never does that- I'd give it an 8 or 9 on Baymax's pain scale -- so I took her to the children's ER-/ where we waited 2 hours for a Dr to do the same thing- say " there's something in the urine test" so we will send it off for a culture!!!! 😵😵😵

Add into all this 4 different seizure Meds in two months and all the effects they could possibly have!😝😝😝

It's been a long two weeks.

Now I Checked with her developmental pediatrician thinks it might be gastrointestinal so we got the new ped to get her an X-ray - they said they'd send the scrip over to diagnostic so we could just go there the next day. 

Guess what? No paperwork -AND the intake person at LVHN had to call them TWICE to get it. So we finally get the the X-ray, easy peasy. It comes back negative--ok. 

This morning she had pain again. So we go back to the "new" ped. today. Grace had 3 accidents at the office. She has 0 accidents at Home! I tell the Dr this and the last culture came back negative and she STILL suggests a urologist!!! I'm feeling that if I tell her that Grace is from another planet she will probably say yes we'll watch it and see and maybe go to urologist!!!!! 

Ok the ending:

It's hard to find doctors that fit your needs. It's near impossible to find a doctor that gets your 7 year old autistic- non verbal- epileptic child. 

Frustration. Not being able to help your child when they are in pain. Your child not being able to communicate to you what is wrong. 

Frustration. 

Cookies.

In Defense of BronyCon

Once again we made the annual trek To BronyCon in Baltimore -and it was bigger than ever. For those who don't know, BronyCon is a convention for the My Little Pony fandom know as Bronys. The Urban Dictionary says Brony  is "A name typically given to the male viewers/fans (whether they are straight, gay, bisexual, etc.) of the My Little Pony show or franchise. They typically do not give in to the hype that males aren't allowed to enjoy things that may be intended for females."

As in the above photo, not all Bronies are Bros. 

Joy met up with 4 of her PEERS. Yes there are young girls there. I even met a BronyMom who was so cool( she was going to see a DePeche Mode concert!!!) that we talked for a 1/2 hour as our girls did!

All interested in Pony merch, buttons art,and really big plushies. It's a great fandom. A lot are into art, cartoons , drawing and fan fictions.

It's really a smaller ComicCon. 

There were many more families like us this year- mixed with older and younger kids. At the hotel, they had Brony key cards and restaurant staff wore Brony shirts. They said there were over 10,000 of us this year.

So yeah, guys go there. It's not a collection of perverted people as you might think ( especially if you saw the Bobs Burgers episode "Equestranauts") Actually, that episode nailed it. There are

some odd people there but no more than you see in the cities. But these people are united by their passion and are among others who feel the same way. No body judges them or looks at them (at the convention anyway) like there is something wrong with them. 

Also, as an autism parent, I saw a lot of spectrum kids and handicapped kids who were just part of the herd. 

There were many more families like us this year- mixed with older and younger kids. At the hotel, they had Brony key cards and restaurant staff wore Brony shirts. They said there were over 10,000 of us this year.

The only inappropriate things I saw were at night- with typical kids misbehaving and a Brony told them to tame it down -- and BRONYPALOOZA - a dusk to dawn concert of DJs that was mostly men - of whom I would say most if them were in the spectrum or "life challenged". But even there they were just dancing with people like them- totally accepted. It was just not the place for a teenager- so we left quickly. 

So if you are with a younger Brony , just stick to the panels in the main halls.

My girl Grace is "life challenged" -- it seems every day throws us a new challenge. Once we cross a barrier(chewing!!) a new barricade comes up( epilepsy and medication.) And we have gotten our share of looks. So I try not to judge anymore. And if BronyCon is a place where my daughter feels comfortable and they keep up their morals of Brony Loyalty and Comraderie, then we will attend as long as she wants to. 

Graduation Day: CHEW U !

                Hall of Fame!

Gracie is one of the Champions of Chewing at Hershey Feeding!

This is the tiny, windowless room that we spent the last 4 weeks in while Gracie was learning to chew at Hershey Feeding Clinic. Some of those days were torturous! But oh what a payoff!!

The photo above is of her eating a Dunkin Donuts hash brown! Her therapist, Whitney, calls her Amazing!(which she is, of course, being Amazing Grace!)

The list of what she can eat has become LONG!:

Goldfish 

Ritz crackers

Chucks of cheese

That's just the start! All the major kid food groups: 

Chicken nuggets 

Mac n cheese

PIZZA

GRILLED CHEESE

PB&J

HOT DOGS

French fries

AND MORE:

Sausage

Pancakes

Waffles

French toast

Donuts

Tater tots 

Cupcakes 

Banana 

Cantalope 

Grapes

Peach

Mandarin oranges

Meatloaf

Green beans 

Fish sticks!!

Many thanks to Dr Keith Williams and his staff, especially Whitney, without whom this could not have happened!!

We are so proud of her!

                 HALL OF FAME

              (Another song by the Script)

  

Yeah, you can be the greatest

You can be the best

You can be the King Kong banging on your chest

You can beat the world

You can beat the war

You can talk to God, go banging on his door

You can throw your hands up

You can beat the clock (yeah)

You can move a mountain

You can break rocks

You can be a master

Don't wait for luck

Dedicate yourself and you gon' find yourself

Standing in the hall of fame (yeah)

And the world's gonna know your name (yeah)

'Cause you burn with the brightest flame (yeah)

And the world's gonna know your name (yeah)

And you'll be on the walls of the hall of fame

Superhero

The Script wrote a song called "Superhero".

The chorus goes:

When you've been fighting for it all your life

You've been struggling to make things

Right

That's how a superhero learns to fly.

Gracie's been struggling to make things right at feeding therapy. 

Last Wednesday they changed the protocol on her to try to get her to use her tongue to put the food onto her teeth  and then bite down and crunch, first just one time and then increasing the bites. 

Sounds simple, right? Wrong. She struggled half the day Wednesday and ALL DAY Thursday to take just one bite. She had a half hour session with the clinic's director, Dr Keith Williams. She tried to do what he wanted- she let him put her fingers in her mouth- very invasive stuff. Never protested- just kept going back to her seat. Finally, in the last session she knocked it out of the ballpark!!

All day I was in agony. I watched her try so hard- unable to do what they wanted. I felt wretched and stuck- I can only imagine how SHE felt. It's horrible watching your child struggle- but she didn't let it get to her.

It's going to be at least another two weeks here at feeding . 

Dr Williams says to struggling parents: think about how many times a typical person has chewed from ages 2-7- You probably can't count them. Up to today Grace has had 79 chewing sessions. 

79.

So forget Iron Man and Captain Marvel-- Gracie is my superhero. 7 years old, wicked smart, nonverbal but she can solve problems and find different ways to communicate and spend weeks patiently learning to do something ALL of US TAKE FOR GRANTED.

That's how my superhero learns 

To fly.

Anger

 

This was me last night.

Gracie had a rough day at feeding therapy. 

We had no AC upstairs and the electrician was supposed to come at 4:30. He didn't come till 6:30. Then I had to clear the attic way( which of All Stupid Things is in our spare room closet???????) and I was specifically told  I WOULD NOT have to do this by a certain party who shall remain unnamed)

All these fun things always happen when that certain person is out of town FOR THE WEEK! Leaving me alone with the child all day and all night!!

I told the repairman what that other person told me to tell him about the air conditioners condition- he looked at me (like they all do) like I was stupid. Then he said "well I will Have To go into the attic ANYWAY!!!!" 

Ok so- he goes up and does his thing and I have to clean out the closet and GUESS WHAT?!? It was low on freon as My husband said it was!!!!!!!!!!!!!!!!!!!!! 

Then as we were talking about how cold it felt downstairs, he makes the comment-----wait for it---------

"You know, cold air falls."

😑😑

Then after he leaves, I put Grace to bed.

She goes up willingly but then jumps out and goes onto her swing. And I'm like oh ok you want to swing a while. She cuddles cutely with her frog then tells me to go! So I stupidly think ok she will swing a little then crawl in bed. 

I go downstairs and break open the EPOOs (emergency purposes only Oreos) and not 10 minutes later I hear what sounds like a heavy body being dragged across the floor upstairs. So I run up the stairs! You must understand - there are only 2 things in her room that haven't been nailed down or put away for safety issues--the carpet and her dresser. 

Well neither of those were where they were supposed to be. So.... 

That's it- Anger took over the console in my brain and I exploded- I yelled so loud and so much I hurt my throat.

I think I scared her too. She started to yell at me then thought better of it and put her puppy over her head. Then...

 Sadness--

Then I start thinking how bad a parent I am. She can't control this. She's not getting the physical stimulation she needs because of being at feeding therapy all day so she has to get it somewhere. 

How do we as parents get through the day? How do we pull back from the brink of despair or ANGER day after day.

I guess I just answered my own question with the picture below. I guess for all the anger, fear, disgust and sadness that goes with being a parent, the JOY outweighs the rest. 

Maybe Joy will come tomorrow. 

I hope so.

Hershey Feeding Clinic

Today was the start of week 2 at the Hershey Feeding Clinic. Gracie has been doing really well. As I go to write this and say she really is behaving well, she tossed a plate on the floor- so no more on that subject. 

Each day consists of 10 10-minute chewing sessions, followed by 20 minutes of down time where we try to do some work or get some energy out. 

There is a "lounge" area where we can chill but there are no windows and no places nearby for physical activity. 

It's a five day work week for us with 3 hours commute time. I chose to commute rather than stay at Ronald McDonald house nearby because Grace can be a flight risk. 

So while the other kids enjoy their summer, Grace gets to work. Doesn't seem fair. But she will get through it. Today she is chewing pieces of CHOCOLATE OREO COOKIES! Woot woot!