Parenthood

The Parenthood that I am referring to is a Television show on Tuesday nights. Every week I look forward to watching and every week I end up crying through the majority of the show. The reason is one of the families have an Autistic son. He has Aspergers and is a little older than Robbie, but I can relate to the struggles they are going through. The episode that aired last night is already all over the Autism Speaks blog. The son "Max" over heard his father saying he has Aspergers and wanted to know what that meant. Personally, we are not at that point yet. We are still trying to get Robbie to answer basic questions consistently- What is your name? How old are you? How are you? The portion of the show that really hit home was when the Dad took Max to an amusement park, instead of following the routine and going to school. As you can imagine- chaos ensued when the ride Max wanted to go on needed to be repaired. When they got home- the Dad explained that he just wanted to have a fun day with his son. Create a memory. Feel like a "normal" family- whatever that means.

I had a similar conversation with my husband this past week. It seems like every time Robbie makes progress, we start to do "normal" family activities. Got to walmart, go out to lunch, go bowling. I love doing this things together. Then something happens to remind us of the challenges Robbie faces. He is allergic to many things- so going to restaurants is difficult- unless we plan and bring food. He develops a new behavior that is odd and people stare. It shouldn't bother me- but like the father in parenthood- it does. I see my beautiful baby boy struggling to feel comfortable in his own skin. It is crushing because it seems there is little I can do at those moments except hug him.

In the past week I have placed 4 calls to our neurologist- made an appointment for June (the earliest I can get in). Made an appointment with the developmental pediatrician for April. Made an appointment to have additional ABA therapy in the home. Spoke with the Allergist twice. And cried a lot. Two steps forward and three steps back and still no answers. Last night Rob told me Robbie recognized the words Robbie, Lexi, Daddy and Mommy. He could pick out which was the correct word association. That is awesome. Last night I asked Robbie a simple question at dinner. One we have gone over hundreds of times. "What is your name?" "I'm four." "What is your name?" "I'm fine." "What is your name?" The final answer was something I couldn't understand. Meanwhile Lexi is saying " That's Robbie. My name is Lexi. You're Mommy. I'm two- Robbie is four." Etc.

So today we get right back into our routine. Some OT in the morning and afternoon filled with private ABA (because school is cancelled for parent teacher conferences). Followed by jumping on the trampoline or moon bounce that occupies the space that once was a dinning room. Swinging on the swings and doing some craft project to keep the hands busy. Having a dairy free, egg free, soy free, milk free, pineapple free dinner and back to bed for the night!

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!!

Making progress

Every few weeks Robbie's school holds a "clinic"- which is really a parent- teacher conference. Not only does the teacher attend, but the speech therapist and case manager do as well. The reports are all pretty good and encouraging. Robbie is making progress. He is communicating more. The next step would be to transition into an autistic kindergarten program. The class is across the hall, which makes the transition easier. From there, they do try to integrate with the main stream children for "specials"- music, art and gym. My husband attended this last clinic and came home with the good report. I was so excited to hear the news- I misunderstood what he had told me. I thought they were saying Robbie might be mainstreamed for first grade. What an accomplishment! The truth is he will not be. First grade will most likely be at a different school with additional special needs class rooms. They will make an effort while he at his current school to integrate and see how it goes for short sessions. Intellectually, this makes the most sense. I know Robbie is not ready to be in a regular classroom. I was just so excited to "hear" the possibility.
I am trying not to be disappointed. We have a long way to go and I am truly happy with his progress. It is just slow. His 2 year old sister has a much wider vocabulary. She speaks in full sentences and makes up imaginary scenarios. She "reads" books to herself- getting a few words right- just from memory, as we read the same books over and over.
Rob and I got into the conversation , again, last night. How could we have missed the signs. In retrospect- some signs were there. Again we feel because he is so loving and does smile and laugh, we over looked the spaciness and lack of words. "He's a boy, they mature later, they develop language later." I should have had an idea when the biting began in the 2 year old room at day care. Especially when a friend of mine had said her son told her Robbie had bitten him. (She wasn't mad- it's daycare, it happens) I remember being amazed that a two year old could communicate that clearly. Still, I thought, hopped, Robbie would catch up. Now here we are. He will be 5 years old in March. He has memorized a lot of phrases. "What is your name? How old are you? Where do you go to school?, etc." The challenge is- does he really understand what he is saying, or is it programed like a computer.
Again, we're looking long term. Rob teaches special education and there is a gym class on Fridays where many of the students are autistic. Part of me wants to go and observe. Most of me knows I will be a mess when I see what my husband sees everyday. The 17 year old boys flapping their hands, not being able to sit still, only having a few key phrases and their career choices are to work at Shop Rite or Wawa stocking shelves. I'm not sure I am really ready to handle that reality. Right now he is a cute little boy who is working so hard. I have to dream that he will have friends, get married, have a fulfilling career. I have to keep hoping. I can't deal with the alternative. So we continue with intense ABA, speech and OT. What else can you do?

Yesterday I drove past a teenage boy, his hair cut in a Mohawk, walking with a Slurpee from Seven-11. If you didn't pay attention, you would miss these details- the muttering to himself, mild flapping of the hands. I pay extra close attention whenever I see him. He is Autistic. I feel conflicted when I see him. Happy that he is now independent enough to walk from his home, by himself, to Seven-11 to get a Slurpee and sad because I wonder- is he lonely? does he have any friends? Do others see him think he is a weird kid? Is that the only independence he has?

It's been way too long since my last post. So much has happened. First I want to thank my husbands cousins for the unbeliveable benefit they held for Robbie. The therapy that Robbie is recieveing is incredibly beneficial but costly and mostly out of pocket. The benefit- for the Hummel special needs trust - was awesome. A tremendous amount of family an friends were there and we felt very blessed for the support.
Additionally my sister ran the philadelphia marathon for Autism Speaks and raised a very large sum for the NJ chapter as well. She had a picture of Robbie on her back the entire race and we were all proudly waiting at the finish line. (Robbie LOVES his Aunt Suzie!)
We are seeing results. Slowly- but results. Speech is coming more easily and behavior is begininng to be more easily modified. Rob and I think the cause is a combination of things. Robbie is growing up. He will be 5 years old in March. School is challenging him. 9am to 3pm five days a week- with ABA, speech and OT all included. Two afternoons a week he recieves ABA at home for two hours- 3:30pm-5:30pm. One day he recives private OT from 8am-8:45am before school. Additionally we are continually working with him at home. As I have been explaining to various family members and friends- everything takes much longer for Robbie retain. The benefit is, at times, it feels more rewarding when he masters a task. We still have a lot of work to do. We still don't know if he will be that teenager walking to Seven-11 by himself. The reality is- that's not the worst thing in the world.
As Robert Frost said
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep