Battles

ECI just left after evaluating Milly for the second time. She can hear now and she's making good progress.

Kind of.

Milly has qualified for ECI services regarding speech and cognition. Milly has almost no attention span. Her motor skills look fine but she doesn't answer or even acknowledge people. She doesn't play or interact much. She threw a million tantrums in the hour they were here.

Yes, she's tired from the Daylight Savings Time change. She's on antibiotics for a red ear that's hurting. She's still working on those frakking molars. And she's two. Two year olds are temperamental.

Or are they? I don't know what the typical development of a two year old looks like. My kids don't work that way. She acts similar to how Sophie was at two. Does that mean it's autism? I don't think so. I think it's a combination of learned behavior from her siblings and no social interaction.

Milly needs to be with her peers on a regular basis. A play group, Mothers Day Out or preschool would do wonders. It's just not happening right now. We're in a holding pattern until the new baby gets here and I can actively participate again.

I think that's the hardest part right now. I feel that this is all my fault. I can't be the mother that my kids need. I have to tell them to wait. Am I neglectful? No. My kids are fed, clothed, clean and loved. I just can't go the extra that I know they need.

A battle is looming. I'm ready to fight but I'm waiting on my body.

What's My Line?

Gideon has moved into script-talking. There is a little spontaneous speech but the majority of what he says is a litany of preset scripts gleaned from normal situations or TV.

When Gideon asks for something he wants, he will say "Pweash?" and sign. A normal response is "Yes, you may!" followed by the item of desire handed to him. (iPad, cup of drink, food, toy, etc.)

Lately, he's been purposely dense if the response is anything other than a hearty agreement and handing over of the item.

Example:

[Gideon hands me an empty sippy cup.]

G: "Miyuk? Pweash?"
(Milk? Please?)

Me: "Not right now, buddy."

[Gideon furrows his brow. Leans in to me.]

G: "Yesh, you may!!"

The implication behind this:

"Mom, DON'T BE EMBARRASSED. You just forgot your line. It happens! Lets try that again."

Nice try, Dude.

To Care and Be Cared For

Since my children were born, I have been the one to care for nearly all of their medical needs. I tracked what the two oldest ate in their respective NICU stays. I'm always the one to take them to regular check-ups. I know their medical histories and can tell a doctor when they started barfing and how high the fevers got. I was the one to stay with Gideon in both of his hospital pneumonia stays. I've held each kiddo down for shots and wiped tears after. I know that when passing out stickers and suckers that Sophie and Milly like any kind of sucker but Gideon prefers orange and that Milly eats stickers.

Last week, I had to give up my usual position. On Monday, the girls went to the doctor for their 5-year and 2-year check-ups. My mother took them. She was the one to hold Sophie's hands while the doctor looked in her ears. (Sophie hates people touching her head.) She held Milly during her shots and cuddled her after.

On Thursday, we got a call from the school nurse saying that Gideon was listless and running a fever. Ben went to get him and laid him down for a nap. I can't drive and I'm not supposed to pick him up. I held him during breathing treatments that night and let him sleep on my chest. On Friday, he was worse and my mother took him to the doctor. His fever had spiked to almost 103. Both ears were infected and the strep test was positive. She brought him home and whisked the girls away for the weekend. I was able to give him medicine and cuddle but Mom was the one who held my feverish baby while the doctor swabbed his throat. How that must have scared him! Ben was the one who held him down for medicine he refused to take. Ben took him to the duck pond on Sunday when he was feeling better.

On Sunday, Sophie smashed her finger at Grandma's house. My mom and dad calmed her down, cleaned it and put ice packs on it while she curled up in her Minnie Mouse blanket. When she came home, I didn't like how much it was still bleeding and I called the after hours nurse who said to get her to the ER. Ben took her. He held her and told her how brave she was. He and two other nurses and a doctor wrestled her to get her bandage off. (Forget soccer. I'm putting her on a wrestling team.) He held her for an X-ray which showed a broken fingertip. Her first broken bone. He dried her tears, praised her bravery and carried her out.

Three times this week I was reminded that there are many other people that can care for my children. Ben told me that God was possibly doing this on purpose to release my sense of control. Perhaps God was asking me to take care of Rory since I'm the only one who can right now.

It truly does take a village!

Desperately Seeking my Son

The two older kids started morning day care about a week and a half ago. Since I'm supposed to be staying off of my feet it was getting harder to entertain them in the mornings before school. Those few hours have been a lifesaver. It's a great place. There are lots of kids to play with and the teachers are wonderful. It's very structured which is very important for spectrum kids. My kids need to be given a task and a time to stop. They need those boundaries. "Free play" is too abstract a concept for them.

Each day I look online at the webcams that are set up in their classrooms. Sophie runs around with the little girls. They giggle and wiggle as they go to the bathroom in groups. (Already?!?) She chases after boys on the playground. (ALREADY?!?) She sits quietly when they do table work or go to Circle Time. She's doing beautifully.

Then I pull up Gideon's classroom. The first few days, he cried when Ben dropped him off. I would see him holding the hand of his teacher and following her everywhere. He would sit in another teacher's lap or right beside her during Circle Time. After a few days, the tears stopped but he would still attach himself to a teacher for a while. Slowly he's been inching away. However, the inching away has been to just go play by himself with no interest in what the others are doing. Today I watched as 29 kids sat in a circle and a teacher handed out some paper. They all waited as patiently as 3-year old kids could but all stayed seated. Then I saw my little boy over by a bookshelf with a ball. He was turned completely around from the kids and teachers. He was fully absorbed with this bouncy ball. One teacher passed out papers and the other was laying out plates for lunch time.

I don't begrudge the teachers working like this. This is not a PPCD class. There are two teachers and 30 kids. I'm not expecting a personal aide for my child. It just stung to see my little boy so isolated. He seems to walk alone in his own little world.

Gideon's PPCD teacher sent home a picture taken in class. I've never seen one so perfectly capture my Little Prince. He's incredibly handsome - those eyes! - but also seems...just lost or trapped. Not in a bad way but unavailable to me. I wish I knew how to explain.

I get glimpses of my boy. Sometimes we can reach him. He looks Ben in the eye every morning to say "Hi!" and kiss him. He tickles me the same way I tickle him and giggles while fully engaging me. When he is tired or hurt, he comes looking for me and snuggles against my shoulder.

But they are short little looks. A few minutes later, he is intensely focused on something else. (iPad, toys, reciting a script from a show.) I feel like the door is closed again and I begin waiting for it to open again. We'll just keep working on it.

In My Head

Do I love my kids? Yes.

Do I hate being a parent of kids with autism? You have no idea how much.

My kids were given to me for a reason. I know that. I also know that whatever challenges God gives me, He will also give the resources needed to meet them. He has never once said that it would be easy. In fact, He says that it's more than likely going to be hard.

A battle.
A struggle.
A trial.
A valley of darkness.

All leave me tired. Physically, mentally, emotionally.

I'm tired of people watching my 5-year old have a meltdown and then looking at me like I'm a permissive parent who spoils my bratty kid.

I'm tired of people asking me why my son covers his ears, doesn't make eye contact, flaps his hands and babbles.

I'm tired of people asking me if Milly is "normal" and then saying that she's two and ready to be potty trained.

I'm tired of people asking me if I'm worried about Rory being normal or ignored.

Most of all? I'm tired of people acting like I'm a saint for taking care of these poor unfortunate souls. They are my kids. They are the most amazing little beings I have ever seen. There is no other option. However, I'm still allowed to be tired, frustrated, and angry at this whatever-autism-is disorder that causes me to be cut off from my incredible kids.

I have a rock, a strength, a refuge in my God. For this, I am grateful. He knows the outcome and is already stretching out his arms to embrace me before I even know that I'm about to break again. He anticipates my needs. He lifts my burdens if I am willing to give them up.

For this, I am thankful.

Bed Rest Conversations

Me: *contractions are hurting so I lie down on my right side*

Rory: "Don't like this side. Roll over."

Me: *sigh and turn to lay on my left*

Rory: "Don't like this side. Turn over."

Me: "Kid, I have no more available sides."

Rory: "Don't like that kidney."

Me: "Leave the kidney alone. It's not hurting you."

Rory: "It's touching me."

Me: "Deal."

Rory: "Don't like this side."

Me: "It's going to be a long 7 weeks."

Ways I've Been That Mom

10. I regularly let my daughter walk around without pants. It's just us here, we ain't fancy and I don't want to have a half hour talk/fit trying to convince her to put her pants back on.

9. I've wiped noses with my shirt. In public.

8. My kids know the opening to The Simpsons and my daughter says "D'oh!"

7. I take advantage of my kids' echolalia by getting them to say funny things. Then I hope that they don't repeat it at school.

6. When my daughter obsessively smooths every single wrinkle from the blanket she's laid out, I smile proudly at my little OCD nutcase.

5. I have held my sobbing daughter through a particularly hard poop.

4. I sing along to Sesame Street songs and try to get the kids involved. There's visible eye rolling.

3. I've licked my hand to smooth down the boy's hair.

2. Sometimes it's just easier to serve noodles 5 days in a row than argue.

1. I've already considered grounding the littlest for making me spend 2 months on bed rest.