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.