Autism Mom to the rescue!

I

I was going to clean out the medicine cabinet and TRY to straighten up the laundry room but An Adventure in Autism came up. 

We had to replace Gracie's mini ipad that she uses at home for speech this week. Why? Because the home button had become "gooed" up ( A term we use for covered in Gracie gak) She touched her fingers to her mouth ALOT and THEN touches the ipad buttons so you can understand how it died. Add to the fact that she's chucked it over the railing more times than I can count(she pitches it if the battery runs out)!and it had an understandably early demise. 

So we got a new ipad (because iPads can't be fixed- they are all one piece--just saved you a trip to the Apple Store) but they give you a special replacement price. 

Anyway, we thought we had the thing squared away, even with her assistive program, when she took it up to bed. 

Two nights she cried and banged and hollered and I couldn't figure out why. Cold? Headache? Stomach?

Then it dawned on me this morning - her special listening music- classical music and bird sounds hadn't downloaded onto the new ipad. Why? I had burned it on FROM a cd so it didn't register as "purchased music"!! ( Thank you Apple) 

So now I can't even find it in my phone or computer because they both recently had updates. You have to be a rocket scientist who reads minds to navigate Apple sometimes. 

So Chris brainstorms- try the old Mac that we gave Joy that she didn't use- sure enough --It was there

But how do I get it from there to the new ipad? It wasn't recognizing the new ipad so I couldn't get it to transfer. 

So after 

1) an hour trying to figure it out 

2) a call to Apple care

3) a tech telling me to update the old computer( I thought I'd lose the songs). 

4) going through Chris' office closet to find blank CDs older than Joy

I organized the songs into playlists and try to burn them onto the blank CDs.

I get one that worked so I hold my breath 

and go to the current computer

- It works! Then I go to check it and miraculously all three that I did are there!!!! I was so relieved that I just let the music play on the ipad. 

So it took me from 10:30 at the Apple Store to 2:30 to figure it out.

Autistic kids are all about ritual. You try to break as many as you can but some are too important to break. Grace has been sleeping with music with bird sounds since her cleft lip repair when she latched onto one of those crib lullaby things- she went through three of them and after they went she began to play the classical bird music on her ipad as she fell asleep. 

It took her a minute or so to realize that her music was actually playing on her new-looking ipad. Then she gave me a smile. ❤️ she was probably thinking "Well, it took you long enough"

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.