No control

Have you ever felt like you have no control? Over your life? Over your children? The past few weeks have felt that way. Robbie has not been sleeping consistently. Many nights he falls asleep but wakes up anywhere between midnight and 2am. From that point he is awake. Not only awake but disruptive to the rest of the household. He will run back and forth in the hallway. He will jump on our bed. He will talk very loudly- reciting movie lines. If you ask him to quiet down he will scream. I am tired. Rob is tired. Lexi is tired.
He has also developed a new "tick." He rolls his head back and forth. While sitting in a doctors waiting room, while riding in the grocery cart, while sitting on the couch at home. Additionally he has been jumping up and down, flapping and saying "eeeeeeeeeeeeeeeee" more than usual. We did recently discover Robbie has food allergies. He is allergic to milk, eggs, egg whites, soy, pineapple, peanuts and dogs. We have removed these items from his diet. So- these behaviors should get better- right? I feel myself getting frustrated and honestly pissed off. We are all working so hard. We'll see a ounce of improvement and then a pound of regression. I know he can't help these behaviors, but some days I just want him to stop.
We are trying to add more ABA therapy to his schedule. Hopefully covered by insurance. I would like to add more OT as well. There are only so many hours in the day. I'm not sure what else to do. Anyone?? Anyone??

Two very different children

Robbie's ABA therapist has been asking me to save pictures from magazines with people doing activities and showing emotion. Dancing, running, smiling, crying, hugging- etc, etc. These are things Robbie doesn't just pick up- like other kids would. A perfect example is our 2 and a half year old daughter. Yesterday she looked at a magazine picture. It showed a woman drinking a diet Pepsi can out of a straw. "Mommy, she's drinking soda. There is a ball- look a circle." This morning I showed Robbie the same picture and asked him what the woman was doing. "Soda" was the response. ( He loves Soda- like all kids- and doesn't get it very often) I asked again- "Yes it is soda- but what is she doing with the soda?" "Soda" was the response. It is amazing to me the way our brains' process information. No one had to teach Lexi what drinking was- but for Robbie, it will have to drilled into his head.

Imaginary play is another example. Both kids are sitting having a "tea party." Lexi says "Mommy look I have coffee. It's yummy." as she drinks the water in her cup. Robbie sits silently and puts his fingers in the cup, feeling the water, pouring it out onto the table. Then gets up and asks for a cookie. He remembers the last time they played this game- they had cookies. His play is more sensory focused. Her play is more imaginary.

On a sweet note, Lexi is doing really well at daycare. The teachers in her room commented on how much she is talking and how well she plays with other kids. They also told me a psychologist came to the daycare to evaluate a little boy in her class. The diagnosis has been determined Autism Spectrum Disorder. The psychologist commented to the teachers on how kind Lexi was to this boy. She helps to guide him to different activities and is the only one who tries to play with him. I was told this empathy is rare in a 2 year old. The teachers explained to the psychologist that Lexi has an Autistic brother. They see her as patient and kind. That makes my heart melt.

How was your day?

Every morning Robbie gets on the bus for school and I say "Have a great day!" Every afternoon he gets off and I ask " How was your day?." Silence is the only response as he heads inside the house. Everyday he will come in, take off his coat and hat, hang them up. Hang up his back pack. Sit down on the bench in the hallway and take off his shoes and socks. Then sit on the couch. I will go through his back pack to see if there are any crafts that should be hung up and read the notes from the teacher about his day. Some days he will ask for a movie. Most days I will ask him if he wants a snack or a juice. This has become our routine.

My question is- will Robbie ever answer. And I mean answer the question with a well thought out response- not just a programed response like the ones he is learning in ABA. ( Applied Analysis Therapy) He has started to acknowledge the bus driver when she says good bye. That is a step forward. There is still no actual conversation. He has to learn appropriate responses to questions. For example, it took weeks to teach him to answer the question- How old are you? His response- "I'm four"- and sometimes he says "I'm fork"- but he will hold up 4 fingers. I've been working on "I'm five" with him lately. He will be five in march. His response to the age question now is-"I'm five." Which his sister automatically corrects. "No Robbie is four, not five and I'm two. How old are you Mommy?" She will generally continue talking, and I love to hear it.

I don't know how you teach conversation. I don't think you can. That's the fear. If you can't teach something, Robbie will not learn it. However, you can't teach love, you can't teach caring and he has those abilities. Maybe he will learn casual conversation??

Quirky

Quirks are defined as "A peculiarity of behavior." These peculiarities are becoming more noticeable with Robbie. For example, Robbie will not step on the grout on the tile floor in the kitchen. Remember as a kid, not wanting to step on a crack in the sidewalk? "Step on a crack, break your mother's back." When I first noticed it, that is the phrase I thought of and didn't pay much attention. As I got to thinking, Robbie has a lot of quirky behaviors. After going pee pee on the potty, he will take 2-3 squares of toilet paper, one at a time, ensuring that the last one has been riped completely. Then he will flush, watch the TP go down, close the lid- with a big bang and turn off the light. If you interrupt this sequence of events, he becomes agitated. Then there is the running back and forth saying "eeeeeeee." The constant streaming of movie lines- jumping from one movie scene to the next.

Some days these quirks don't bother me at all. Other days they drive me insane. I think a large reason is on the days when his quirks are the worst, he is out of sorts as well. He is "spacey" and more difficult to engage. I can ask him a question or ask him to complete a task and he will act as if I never said a word. Frustrating.

These are also the behaviors that make it difficult for him to ride a bike. He can't seem to focus and if his eye catches sight of something interesting to his left- that's where the bike ends up- a ditch, puddle or bush.
I know these will be the things we're really going to ave to work hard at as he gets older. Not only so he isn't the weird kid, but so he can function and complete a task. Some days are so good and others- no so good. But we keep working- keep him working. He is an incredibly loving boy and who knows what potential is untapped!!