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.

Frustration

I don't know any other ways to try.

• Sticker chart.
• Put her in panties.
• Leave her bare butt.
• Try to explain that she already goes tee-tee in the potty. Why not poop?
• Leave her on the potty for over 30 minutes.
• Go to the potty every 20 minutes.

People, I have NOTHING ELSE. She goes to the potty. She just flat out refuses to poop in the potty. If you leave her bare butt then she waits and holds it until nighttime when we put a pull-up on her for the night. If you try to talk to her about it then you either get a completely blank stare or she gets angry because you're taking her away from something that she wants to do.

I'm frustrated. I'm angry. I'm so freaking tired of autism. I hate it. I love my daughter fiercely. She is brilliant and there is so much locked away from me.

School Days

Sophie and Gideon just brought home their first report cards a few weeks ago. It felt surreal to be on the other end of that piece of paper. Since my kiddos don't come home and tell me about school, it was also a glimpse into what's happened so far.

Both kids have made HUGE leaps with their vocabulary.  Sophie started the year using single words and repeating simple sentences occasionally. Now she uses simple sentences on her own. Gideon began almost completely non-verbal. The first month of school he used a little recorder with a big button to communicate. His teacher would record the answer ahead of time, ask a question and then let Gideon hit the button to "answer". Now he's repeating single words and using words of his own without the recorder. Actually, he's used the recorder the last few days. Ben and I have talked about trying to see where Gideon's autism ends and his introverted nature begins. Sometimes he just doesn't talk because he's too shy or there's too many people around. That's not autism; that's the Dyer male. (With the exception of my father-in-law who, I believe, got the talkative nature for 6 generations of Dyer males.)

In addition to the report cards, I've gotten an update in a binder each day telling me what they learned, what centers they played and other tidbits. They both started the year playing alone or playing with the teacher's help. Now Sophie comes home with "played with friends" circled almost daily. She's even mentioned a few of her classmates names! Gideon has even had it circled a few times. I really hope they're making friends. I know how hard it is even without the autism. Every time I see that circle, my heart swells to think of my little man stepping out of his comfort zone to play with his classmates.

Sophie has been going to the regular Pre-K room for 20 minutes each day for 4 days a week. She participates in their Circle Time. After 2 weeks, I spoke to her teacher who said that Sophie was quiet and a little afraid of the Pre-K teacher. She stayed close to her aide and wouldn't look at the teacher or talk to her. This broke my heart because it sounded so familiar. I can remember being terrified of a teacher each year in school until high school. It was never my homeroom teacher but was always one I didn't see all of the time. I discussed this with Sophie's teacher who said that she would talk to the Pre-K teacher to see if there was anything they could do. After a week she said that Sophie would talk and smile at the teacher. Now she eagerly goes to her other classroom and will interact with the kids and the teacher. I'm so proud of her for conquering her fears.

In 8 weeks, I've seen massive changes. I can't wait to see what happens by the end of the year.

Just Say No

When you are the parent of a special needs child, no matter what the diagnosis or level of adaptation, you look at mainstream activities differently. You carefully check the rules for every Mother's Day Out and VBS to see if your child doesn't meet any of the criteria. You make a point to speak to the head of whatever program you like and let them know details about your child to see if they are able to handle what comes with your little darling. The best thing that you can hear is "Of course they can come!" What people don't realize is the second best phrase we can hear.

"I'm sorry. We can't accommodate your child's needs."

It sounds counter intuitive, but this is actually a good thing...as long as you tell us BEFORE we put down deposits, get our routine-loving children into going somewhere new and make time in our already packed schedules for another possible socialization-skills-building activity.

If you work with kids at a church or other location, please understand how important it is to us as parents to hear that you understand our childrens' extra needs. Just because a child is three does not mean that he talks or is potty trained. A four year old might become agitated if Mama does not leave quickly enough because school is for teachers and home is for Mamas in her mind. If we give you a label for our children and you don't fully understand what they need then ASK QUESTIONS. Tell us no. We've heard "no" before and we're OK with hearing it again.

Walled In

Gideon wanders around the room with a Power Ranger. He stops to make the toy bounce around a table and the baby gate. He babbles to himself; sometimes loudly and sometimes very quietly. Sometimes I can understand a few words or the tune to a song. He'll wander over to where I'm sitting and climb up beside me. He snuggles next to my arm and keeps talking to his Power Ranger. He always sits as close as he can to me.

Tonight, as I dressed him for bed, I had to chase him a little and then wrangle him to the ground. I got his diaper changed and put his clothes on. I was able to get him to say "shirt". Kinda. After we said our family prayers, he was sent to me for kisses. He kissed me soundly and I grabbed him up to snuggle and tickle him. After he finished giggling, I sat him in front of me.

"I love you. Can you say 'I love you', Gideon?"

Nothing. He can't even look me in the eyes. He just looks around the room. No more babbling. Just wandering eyes.

"Gideon? *tap my chin twice* Can you say 'I love you'?"

Still looking around.

"Baby, can you say 'Mama'?"

He briefly meets my eyes and grins. So I just gather him up and kiss him again. I put him to bed and tell him I love him.

I don't know what my little boy dreams. I don't know what he thinks about. He doesn't tell me what he wants to eat and drink so I have to guess. He's not potty trained because every time I've tried to teach him he just repeats the words while smiling. He intently watches Play With Me Sesame, Imagination Movers and Mickey Mouse Clubhouse. He knows most of the episodes and has started to parrot them back.

Ben and I talked about Gideon yesterday. We talked about what we're missing. We don't get to hear little boy descriptions of anything. We play cars, Legos and blocks with Gideon but he gets distracted fast and will wander off. If the teachers at his various schools didn't tell us what happened during the day then we would have no idea if he had a good or bad day.

This is not to say that he won't learn. Better days are coming. Through speech and behavior therapy combined with time, he'll be able to communicate with us.

I still can't help but look at my little man as he sits playing with his toys and wonder what I'm missing.

Domesticating the Kids

Since Sophie was diagnosed with PDD-NOS, I've been reading and researching every day. I'm always on the lookout for ways to teach her and communicate. What can I do to improve her vocabulary? What games will be the best way to keep her entertained? Let's find more ways to socialize her so that she's surrounded by emotions and facial expressions.

She and her siblings are already attending Sunday School as often as we can. The Month of Sickness kept us from church for a while but we're back and the kids really enjoy their classes. We also send them to a local church for Mother's Day Out on Wednesdays and Fridays. It's there that Sophie made her first real friend. She remembers his name and tells me about their day. The teacher says that she and this little boy chase each other all day, every day. Her Daddy isn't wild about the fact that Sophie is already chasing boys but I just assume she's like her Mama. It was way more fun to play with the boys on the playground. And in the lunch room. And after school. Fine, I was somewhat boy-crazy but not in the romantic sense! (Although, I did fine in that area.)

We've also found another church running a summer camp/MDO program. This one is on Tuesdays and Thursdays. Sophie's class will be taught by a PPCD teacher. I'm eager to see what she thinks Sophie's next step should be. I would really like some direction for what to do next. Should Sophie start public school? Would a Montessori school be more engaging? Would a private school have the resources she needs? Do we need to do more therapy before enrolling Sophie into school?

Another way to structure Sophie's day is to introduce her to domestic tasks. She's now learned the whole laundry process. She can sort clothes, load the laundry baskets, load clothes into the washer, unload the dryer and hang up her shirts. I talk to her every time about what we're doing, showing her how our clothes get dirty when we wear them and how they get clean and back into our drawers and closets. I'm going to make a social story so that she can see the process.

What is a social story? The way I see it, it's a piece of paper or set of cards with pictures and a simple story telling what happens in a situation from real life. You take the kiddos through the whole process of something, like doing the laundry, to help them understand how to do the individual steps and why they should be done. Routine is a HUGE deal for Sophie. These social stories will help her patiently go though new situations so that she won't get anxious about something she's never encountered.

Today, Sophie is helping with the laundry. She's broken chocolate chip cookies apart and put them on the baking sheet. She's carried dishes to the sink. Domestic chores are good for spectrum kids because it's the same routine every time. It puts order into their lives which is soothing to Sophie's little mind.

It also gets Mama moving to keep up with the laundry.

I Just Don't Know

Sophie is having multiple nuclear meltdowns today. It makes her incredibly sensitive brother cry. I used to be that sensitive sibling hiding when the yelling started. Now I'm the Mama who has to simultaneously calm/redirect Sophie, reassure Gideon and keep feeding Milly who is wondering where her macaroni went.

Sophie goes in the crib to calm down. Gideon gets hugged and kissed. Milly gets her macaroni. Once Gideon and Milly are done with lunch, they go down for naps. Sophie continues screaming.

Pull Sophie out. Chores will have to wait. Put her sneakers on and grab the chalk.

She's alone and outside. I'm watching from the porch. She's a different kid. I see the tension flowing out of her every time she turns her face into the wind. Sometimes she stops drawing and just stands. She's quiet. Her long hair blows all around her head because she refuses to put it up. She squints in the sunlight but her face follows the warmth.

She can't tell me why she's angry but I can fix it. A little.

Chalk and sunshine. I wish I knew what that cured.

Judged

Today was grocery day. I loaded Gideon and Sophie into the car and we headed to the WalMarts. They needed to get out of the house. I wanted Sophie's opinion on what to get. She can actually voice her wants and preferences now!

We're walking down the aisles; Gideon is in the seat of the cart and Sophie is next to me. Sophie is gleefully pointing at things she recognizes and calling out the names. She repeats things often and wants me to repeat them, too. I keep her out of the way of other shoppers as best I can but she's 4 and she's fast. She listens well, though, and comes back to me every single time I call her name. I have to call it a lot.

Gideon is DONE WITH THIS about halfway through the aisles. He starts whining and hitting at me. I know this behavior. He just wants to be held.

Aside: We're almost certain that Gideon is going to test somewhere on the spectrum. He only shows two feelings; happiness and frustration. The rest of the time, he is a blank slate. He lines up toys and builds sculptures that no 2-year old should be able to see. He is almost perfectly mute except for a few repetitive speeches from TV and songs. I can already see stimming when he gets upset. The only thing that is different is that he seems to crave rather than shy away from physical touch. It MUST be from me, though. I have to hold him a certain way when he gets upset. I have to speak to him or sing his lullabye.

I stop our cart, make sure Sophie is holding onto the side and looking at the cracker selection and reach down to hug Gideon. I speak softly to him and we count to ten. He perks up a little and we go on our way. It's then that I see a young woman giving me a horribly dirty look. She walks away with a young man while muttering something about "spoiled brats".

Really.

I desperately wanted to turn around and say something witty, scathing and educational to this woman. I wanted to yell at her that we were actually having a very good day. I wanted to tell her about all of the leaps that Sophie had done over the last month. I wanted to tell her why she was so very wrong about my children.

Instead, I turned around and asked Sophie whether she wanted Cheez-Its or Goldfish. She wanted Goldfish. The color ones.

That woman was ignorant. She has no idea what my family struggles with every single day. She chose to make a snap decision based on what she saw. She saw a very tall girl who looks to be about 5 that can barely speak running back and forth across the aisles while her mother called her back every 3 minutes. She saw a little boy whining and smacking his mother and the mother just cradled him like it was OK.

Autism, PDD-NOS, Aspergers and other spectrum disorders don't show on the outside. It's not like having a child in a wheelchair or a child who uses sign language. Our kids usually just look rude and poorly parented. In reality, those kids are my life. Not a day goes by where I don't try to teach them something about God, manners, speech or anything else I can do. I feel like I have to teach sideways because that's how they see the world. It's slow going because I have to learn them first, then translate what I want to teach into their language and then teach them.

The next time you see a mother struggling with her children, please don't make a snap decision. That child may be battling something you can't see. That child might just be late for a nap. Either way, give an encouraging smile and let that mother know that she's going to be OK.

Red Flags

He's not talking.

He has a very talkative older sister.
Boys talk later than girls.
Sometimes he'll repeat and talk with Sesame Street.


He's not responding to me.

He's just 2. 2 year olds are stubborn.
Maybe he can't hear me. Schedule another hearing test.


He's lining up his action figures in precise ways and gets REALLY upset when you move one.

He's just playing.
He's protective of his toys. He has to be with two sisters ready to steal them.


"On August 15th, the BSRC published a paper in Pediatrics which reexamined the recurrence rate of autism in high risk families. It found that in families with one or more children on the autism spectrum, the chances that a baby sibling will develop autism are around 1 in 5, more than double previous estimates of 1 in 10 to 1 in 30. The rate was much higher among younger brothers (1 in 4) than among younger sisters (1 in 9). In families with more than one older child on the spectrum, 1 in 3 infants eventually developed autism. The severity of the older sibling's autism did not affect the risk to younger brothers or sisters, nor did other family attributes such as parental age, ethnicity, or birth order."
 - Autism Speaks


...higher in younger brothers?


Bottom Line:  It's time to cry, pray and make some appointments. 

Line, Please?

So.

PDD-NOS.

Ben and I have accepted Sophie's diagnosis.  Now we're attacking it like the geeks we are; by reading everything available and studying like we're two weeks away from a final exam.  Sophie has not yet had her evaluation by a Special Ed teacher because she needs some medical tests done first.  Until then, we're trying some things we've read about.

Sophie uses something called echolalia. She hears us say something and can't process or understand it so she just repeats the last thing we said.

Before:
Ben:  "I love you, Sophie!"
Sophie: (just repeating) "I love you, Sophie!"

Sophie also uses "scripts" to describe how she is feeling or what she wants.  She usually takes these from her favorite TV shows; Mickey Mouse Clubhouse,  Imagination Movers and Sesame Street.

Sophie:  "Whassa matter?"
Meaning:  "Something is wrong!"
Origin:  Mickey Mouse Clubhouse episode "Doctor Daisy, M.D."

Ben and I have been watching and listening to Sophie to see how she uses language and scripts.  We've been trying to modify how we speak to her and see if she responds.

Now:
Ben:  (pointing at himself) "I love you, Sophie!"  (pointing at her) "I love you, Daddy!"
Sophie:  (understanding her line) "I love you, Daddy!"

Now Sophie will come up to me with a grin and say "I love you, Mama!" because she knows that I'm supposed to say "I love you, Sophie!" back to her.  She no longer needs the prompt.

We're working on some more scripts for when she's hungry, tired or needs something.  Basically, we're teaching her how to use pronouns correctly which makes her connect to herself and others the right way.

It's a lot of work but Sophie catches on quickly.  We're already thinking of some flash card ideas and games that we can play.  We also use dialog from Mickey Mouse to see what's going on.  God knew what he was doing when he put me in theater and made it easy for me to learn a lot of lines!