Angels

It was a rough weekend for us. Gracie had a tough week at school;- She was sick two days and probably should have stayed home on Friday. She had a rough time at school and did some things she's never done.

I was very upset. We were supposed to go away for the weekend but ended up driving back home. Everyone was on edge. We kind of just shuffled around each other trying to avoid contact.

Sunday Joy went to a friend's house so Chris was going to take Grace to church. I wasn't going to go. Something made me go change my shoes and put on my not so slouchy jeans and go along.

I sat with Grace. She sat on my lap. Thankfully, two twins were being baptized so that kept my attention. I spent 12 years in Catholic School so I still feel a little like an alien at our Lutheran Church. 

Everyone is nice. Chris was council president for what seemed like a LONG time. But I never felt connected. So at the end of service they HAD to sing the Josh Groban 9-11 song, You Raise Me UP.

That song ALWAYS makes me cry. ALWAYS. So there was no hope for it. I was crying behind Grace's head , hoping no one would see. But I actually was hoping someone would see, I think.

And someone did see. God sent me an angel.

Her name was Jennifer and I had seen her at church and school but didn't know her. She came up to me, touched me on the shoulder and said, "I just want you to know, you are a good mom." She said she had watched me with Grace and saw great changes in her and she just wanted to let me know."

It was just what I needed. Needless to say, I cried more. But she said I could contact her anytime.

Just like that.

I've learned that God is there for us the hard way. I learned through the bad times. But I learned. And now I see that he was there for me on Sunday, when I really needed it.

But it didn't stop there.

We stopped at Hellertown's crappy Dunkin Donuts because Chris can't stop himself from going there for coffee and ordered breakfast. The girl gave us our order and Chris waited for her. He said " arent' you going to ask for my money?" She said no, our order was paid for by the car IN FRONT of us.

So, suprised by this , he told the girl to pay for the order in back of us and gave her a tip. So, wether it was the same angel or a different one, I, we , had angels looking out for us. And I can't say how much it was appreciated.

Movie Day

Yesterday we ventured out in the 112 degree heat to see "Pete's Dragon"- 

Gracie watched the whole trailer for the upcoming movie "Sing"! So I guess we will have to see that.

But when the movie started she snuggled in next to me and didn't put stickers on my face! The beginning of the movie was set in the woods so a bear caught her eye. Then they showed an owl and she made sure everyone in the theater knew she saw it! Then they showed a boy in the hospital getting his reflexes checked and she said Knee!  So I knew she was still watching. When they shifted to a chase scene they lost her. But she stayed with it for maybe 30 minutes which is a first! 

It's so rare for something on screen to catch her eye. It was so good to sit there and watch WITH her! 

A Little Help from my Friends.

Gracie has so many people that help her. 

At school this week they had field day activities. The kids went from station to station doing different activities. Gracie tried each activity and did her best and she had help from her personal care side,  Miss Valencia. 

She also had help from her classmates.

Her friend Maggie is always there to guide her like Peighton was last year.

We took a class at Parkettes and her Tss,  Miss Beth and the teachers there helped her to learn new things.

Even her sister helps her at Miracle League.

We have met so many people who are willing to take the extra time she needs to  do the things that all the other kids and we appreciate them.

A Different Day.

I feel I have to write a new post after the last one. I probably shouldn't have posted it but I was feeling low. 

After spending all last night writing down Gracie's behaviors from the last month and a half- I presented my list to Gracie's Developemental Pediatrician, Dr Soares. We have to drive 2+ hours one way to see him but it's worth the drive. 

He let me go on and then asked me what  was most important and I said the stomach issue. He said "Oh I know what that is. She's a classic case. She's impacted." (This after the nurse at her gastro doctors said that she WASN'T impacted!) His advice- give her more miralax- that's all. 

What is next in importance- Her OCD symptoms- having to have control of something in order to do something else( having to close the doors in the bathroom before brushing her teeth- or having to tell me what to wear before she gets dressed.) Easy. 

Calmly say no and redirect her attention to another task and then give her praise for doing the task. 

Then about the stims- hand or eye movements that seem uncontrolled- let them go. They will go away when her stomach feels better or when her tension at school eases. (Working with a new assistive device) 

I was also told to ignore her when she hits herself on the head and it will stop. So I have to work on my stoneface. 

He said she won't hurt herself by doing that. Then he went on to mention examples of other children actually physically hurting themselves and I felt bad that I felt relieved that she didn't do those things. 

So all my worries were not to worry. I used to tell one of the girls who worked at the ice cream store with us that she worried too much and she really had no need to. ( that's you Bethany Bittner) I guess I should take my own advice. Thanks for the hugs. 

24 hours later.

I wrote this last night.

I guess I am feeling low today.

I went to pick up Grace from school and had a typical day go to a bizarre day in the blink of an eye.

My friend Kate knows how every day when we pick up the kids we hold our breath. Did everything go well? Will they be there on time? and so on.

Well, today i waited

and waited. Starting to worry.

A woman I don't know comes out calling for LIsa Kulp.

.............

What happened now. Grace was with her favorite teacher and crying. Not good.

Heading toward the bathroom. Really not good.

Mrs. Rolek tells me she's been here a while. Oh so ok. We've had this trouble before.

I let her go a while then try to get her out, figuring she was done/ No. Not yet. 

Ok.

Wait. Try again. Grace school is over, its time to go home. Ok... NO

Now it's 3:30. She is still feeling she has to go.

But it's over now. NO

3:40 What do I do? Don't you want to go home? NO

3:45 I text Mrs Rolek and ask what time she went in, didn't she say 2:30?!!!!!

She's been in the bathroom for an hour???? She doesn't stay this long at home!

I used the visual timer. NO

Finally, I KNOW she is done and I just sweep her up and move her out.

Finally, in the car.

Finally, going home.

I took her home and let her soak in the tub. I think she really wasn't feeling well. She was in the tub for a long time.

______

Why is it that I can't even figure out what my child needs or how she feels.

Parents of Autism go thorough things that parents of typical children never would. 

When was the last time you found yourself in a public bathroom with your child  for 1/2 hour?

And they are all different so we all have our own special experiences.

Maybe that's why I write about what happens to us.

Whenever I feel that I don't know what to do, I feel like I've failed her. I'm the mom. I'm supposed to know what to do.

But I don't. 

and it bugs me.

Why do things have to be so hard for her?'

Called the doctor and the doctor said increase dosage of exlax and myralax- call next week. 

Ok. Thank you.

But they don't tell me how to help her.

24 hours later. waiting.

Autism Walk 2016

It's time again for the Autism Walk. We walk every year now.

Its's one day when we don't have to worry about behaviors or looking or acting

differently than other families.

It's a day when other families like ours get together to celebrate the reason we ARE different.

They come in all shapes, ages and sizes and are ALL completely different- no two alike.

And it's all good.

They are special and it is something to celebrate.

Chris had said last week, we have been able to be involved with people and organizations we never would have met had Gracie not come into our lives. So , if you can please come WALK with us on April 16th at the Steel Stacks or consider a donation

to Autism Speaks.

Families like ours appreciate it!

My only wish is that we could get into her brain and find her voice so she could share her specialness

and share it with all of us.

Autism. Yay. Again.

Today we reached a new level of "Autism. Yay". I would post a picture but I feel it may be offensive to some- so I will post this shocked-anime-face instead.

Grace had really bad belly pain this morning from constipation. Really bad-- crying- hitting herself bad . So I kept her home. Some gas drops provided some relief but this went on all day in spurts. 

Later in the afternoon she went upstairs and declothed herself so I told her to put on a shirt and underwear. She put on a shirt and a diaper. We only use diapers at night but she tries to get away with it sometimes when she's not feeling good. 

Anyway, I made her put on underwear.

Then after Joy came home, I found....pee in the dog's water bowl...

I guess I made her mad and she told me so...

This was me after...

Actually it was more like this...

To add insult to injury- we had to administer a suppository in order to give her some relief. Needless to say - by bedtime she didn't want to see Chris ( who gave it to her) or me! Poor Gracie. 

Don't know what else to say. Those faces  just say it. 

Autism. Yay.

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.