Thoughts on...

Today they are having a service for Jayliel Vega Batista, the young autistic boy who wandered away from home New Year's Eve and was found dead at the Lehigh Canal.I don't know why but I was in Allentown on Wednesday and I felt the need to go to the place by the canal where they had the vigil for him over the weekend.

I don't usually go places I'm not familiar with but I plugged it into my GPS. I felt I had to see where they prayed for him, where he was lost I left a Christmas Mickey Mouse.

I just can't explain why. 

The place was remote- not where there would be anyone to see anything.  Cold. Nothing to attract attention -- except the water. 

Why are they attracted to the water so much? 

I hope he had his music- he had the music of the water. I'm sure he wasn't afraid. They don't feel fear like we do. 

I found myself thinking of Shakespeare's Opelia after I heard of his death. I'm sure he wasn't afraid. 

I feel so badly for his parents and family. So many people misunderstand autistic children. If they (the children-and yes I'm generalizing ) see something they like,they remember and if they see an opportunity to get to that shining thing,(many times water)  they take it.  

I guess what I'm trying to say is that there is no way for us to get in the mind of our autistic, nonverbal children. I would personally give my right arm,literally, to understand Grace's thinking and feelings. It would make my life AND HERS a lot easier. 

So my prayer... And thoughts will be with his family in hopes that they can find some comfort.

Expressing Herself

This week Grace has been expressing herself vocally- alot,

The first time was when I was folding a sweater I had worn that she especially liked. The first said and signed Black then vocalized Sweater- so we learned the sign for sweater and she was off. She said BLACK SWEATER til she went to bed.

The second one, which I had thought originally was the best one, was when she told me:

Mama, I love you.  -- I melted. That was the first time she put it all together.

But today she was with her new after school Tss, Beth, who is a lovely person. They were drawing on the chalk board and I went into the room and Gracie pulled me over to draw.

Beth told me that they were drawing Miss Heather-- Grace's Tss who left the agency before Christmas.

After a moment, I looked at her ipad that she uses for her words. 

It said:

I WANT MISS HEATHER DO SOMETHING ELSE,

This to me was more gut wrenching than when she said I love you to me. 

Heather had been with her for at least 3 years, day in and day out. All of a sudden this person who she

depended on and worked with is no longer in her life. She just disappears.

Some might think that since she is unable to express her emotions like we do that she doesn't feel things like we do. Or since she doesn't talk she might not think like the rest of us do.

But how would you feel in her place?

Miss Heather, if you read this, we-- Grace misses you. Thank you for the years you spent with her,

teaching her, pushing her, laughing with her, fighting through the bad days. You made a lasting mark on her and SHE wants you, US to know that.

Sadness

It was announced today that Jayviel Batista was found in the Lehigh canal. 

He was autistic, unable to talk, alone and in the dark with no shoes, coat or socks. 

He wandered away from a house where his parents were at a New Years party. He liked music and water. 

 

I spent the night praying for this young boy and his family. I spent the night reliving the fear I felt when Grace eloped. She likes music and water and the day she eloped I thought she found her way to a pool in our developement. But she went to the fountains instead. I remember the fear. 

Since then we have put chimes in our doors- bought her medical ID tags for her to wear- we've had to turn the locks on her doors around to make sure she can't wander around the house at night- we have to lock her closet door- we've had to put bolts on the doors that don't have chimes. 

I've read some comments on the posts about the lost angel judging and blaming. Please don't. Autistic children can be bright and quick. If they see an opportunity, they take it. It's not something they, or we as parents, can control. We do all we can but its so easy for them to escape- you see, they are smarter than we are. 

I read another comment that I cannot repeat because it was unspeakable- that some people could think to say after such a tragic loss....

Well I replied to the imbecile. I never do that. I replied as a mother. I replied in a controlled polite way that the imbecile probably wouldn't understand. 

The only thing I could say was that little boy had more Grace and intelligence in his litte finger that that person would ever have In his heart or mind. And most importantly that that little boy is in heaven right now. I pray that God sends the Spirit to comfort his parents in their time of loss. 

 

"Elopement" and Autism

It's not a happy new year for the family  of an autistic boy in Allentown. This little boy wandered off during a family party on New Years Eve. Jayliel Batista is 5 and he's autistic and nonverbal. He's alone and has no coat, socks or shoes. He likes lullabies and water. 

My heart froze when I heard he was missing but really cracked when I heard he likes water. 

This happened with Grace two years ago. She likes water. She made her way out of our rental property at the beach. 

She took all her favorite things and made her way to the public fountains which are her favorite things. We were lucky. We live in a neighborhood which is pretty much contained and she was only gone for a few minutes and security found her right away. 

We learned then that it is called "Elopement" and that a high percentage of autistic children are prone to do it. 

"Elopement" is such a nice word. It makes you think of kids in love running off together-not small children who can't speak wandering unknowingly away from all they love --

and those who love them. 

I can't sleep. If I was home, I'd be up or out trying to help in some way. 

So I pray here. For a little lost boy and his family- that boy who could have been My daughter, but for the Grace of God. 

Please pray with me.

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.