Rowan pooped on the potty ...after weeks of behavioral therapy and intervention. He did it two days in a row so far.
When I was leaving for work he waved at me and said "bye,bye mommy"!!
He also walked into the bathroom by himself and peed on the potty with no prompt or conversation whatsoever. Completely on his own! !
I just asked Rowan if he would like to go pee on the potty. He was not happy and said..." I don't want to!"
Yaay! ! New communication!
Rowan walked up to my basket of clothes. He took out Arwen's shirt and said " I want wear it." Of course I let him. His words touch my heart.
After brushing or teeth...Rowan lingered in the bathroom playing with his cars.
I was in the dining room and I heard, "yaay"! I went into the bathroom to see him sitting and peeing on the toilet. :)
Also, when he needs to poop, he now brings me his diaper. This means he understands when is coming.
Now for the hard part. ..easing his fear of pooping on the toilet. He's terrified and panics.
While I was getting Arwen's shoes on, to go to school this morning, her legs were blocking the entry to the hallway. Rowan walked up to me. .. making eye contact ... and chanting "toilet, toilet, toilet. "
We quickly moved. He went in attempting to pull his pants down. I hurried and pulled them down for him and sat him on the toilet. He peed. I was so proud of him for communicating. Great start for the day!
Two cool things about today.
1. Rowan was chanting pee pee pee pee pee.....he went into the bathroom on his own. He climbed up on the potty and started peeing. It shot across the room but he knew what to do! !!!
2. He said "yellow bubbles". That was him asking for the yellow bottle of bubbles.
And a quirky kid moment by Arwen: I told her she could jump in the bath, get washed quick and get out, so that she could play Pokémon. She said "I don't want to jump in the bath! "
In case you aren't aware. ... kids with autism are very literal. Haha
Rowan has learned to take off his pants and underwear. The only negative is that he prefers to be this way.
Rowan has learned to take bites out of cookies. Will he be able to generalize and do the same with other foods? This is exciting news. ..I sure hope so!
I know I'm way behind writing here. Things have been hectic. From pediatrician, developmental pediatrician, ABA therapist, Speech therapist, occupational therapist, neurologist, behavior technician, and soon to have geneticist for Arwen and Rowan. Then we have pediatrician, gynecologist, and chiropractor for Mila. I also occasionally help get her to work or from school. I have appointments coming up for myself too. I've been stretched pretty thin. Rowan still panics with anything that looks like an exam room. The neurologist appointment was a nightmare. There's a lot to say but no time right now. I have one home because of scheduled off day. Another home because of fever and then i have to pick up the middle and take the whole lot to two appointments. Luckily my oldest daughter is an adult and handles things herself. .otherwise I'd probably be in serious overload.
Was that excuse good enough?
I'll write a better update when I can.
Please pray for a better car situation. ..my car is on the verge of breaking down and I'm panicking every time I drive it. Thanks. We need a miracle.
Rowan just stood up and said "potty time." We went to the bathroom and he peed. Yaaay. He also just learned to flush.....flush. ... flush!
Today Rowan went up and down the bus stairs. The para told me he didn't cry today either!
What's going to happen to them when I'm gone. Who's going to take care of them? Who will love them as much as I do? Who will understand their needs? Will they be institutionalized? Yes.... I'm well aware of my mortality.
This morning went smoothly. When the bus arrived, Rowan was happy to see it. He was fine up until we entered the bus. Then he gripped me and whined.
After school, the bus pulled up. I could see him through the window flapping and excited to see me. He was smiling when he approached. He held the hand rail and went down the stairs by himself! I hugged him so tight. I had tears of joy...especially when I saw his school paper. He had a really good day and ate all of his snack! He used a new word and confirmed that he understands it. I offered him yogurt and he said "no ".
I forgot to mention. Tim forgot to give Rowan his paci Sunday night. He went right to bed and slept all night without it.
The bus was late, and by then I had a knot on my stomach. I videoed the bus arrival. The nice lady helped Rowan to the stairs. He was shaking and scared but happy to see me. He was smiling. I hugged him so tight. I have never missed him so much. I couldn't stop hugging him.
When we walked in. ..i was talking to him about the school and the bus. He said "Passenger. " He has heard this word from a Little Critter book called "Just me and my mom" by Mercer Mayer. He had an interactive app with this book that he taps pictures and it'll say the word.
It was smart of him to connect the story to an actual experience. He was in fact. ...A "Passenger" on the school bus.
I tell you what. ... I've never been so happy to see him. The picture I attached shows how his day went. What a relief!
Everything went well. I even got to meet Arwen's new permanent teacher. She's great. I'm pleased. After dropping her off I took Rowan to behavioral therapy.
After therapy we picked up our shirts for the Autism walk. We spent 40 minutes at the Autism Society of Northwest Ohio talking about resources and local offerings. Very good people over there!
Then home to get Rowan down for a nap. I did house cleaning, lunch, and phone calls during the two hours he slept.
I got him up and we went to pick up Arwen. It went smoothly. We went home and got Arwen changed. Tim came home early so we could all go to Rowan's orientation.
His teacher is excellent. I spent a lot of time discussing Rowan. All sorts of questions were answered. She gave me her email. We've gone back and forth talking that way as well. It's wonderful. They have an awesome motor room that he's going to love! His teacher really put me at ease. While we were there he was so happy. He really liked his classroom. I said " Rowan, this is Miss Laura. " He went over to the play area then turned and pointed at his teacher saying "Miss Laura, Miss Laura! " I was so excited, he was talking! I realized he needed a book bag. .. One with the strap across the front because he's never worn one before.
So we headed to Target and got him a backpack. <3 My baby is getting so big.
What a long day! We went home. ..ate... And to bed!
Rowan was sitting beside me and I thought I smelled poop. His underwear were dry. I asked if he needed to go potty. He said "potty time, peepee". I put him on the potty and a moment later ..He pooped!!!!!
I cry for my kids.... Every single day. Every time I think about the struggles they will face. I wish I could take it away.
There is a group of neighborhood boys that get together and play next door. They have a lot of fun. They jump on a big trampoline and rough house.
Arwen stares over at them, her lip quivering, her face flushing, so sad. She desperately wants to play with them.
They don't understand her. She doesn't play appropriately. Her gross motor skills are underdeveloped and she's clumsy.
Her exclusion hurts me. Her sadness rips my heart out. Her pain is my pain...And this is only the beginning.
Rowan is supposed to start school on Tuesday. I still haven't heard from anyone! I sent another email. ..no reply. I'm getting frustrated and impatient.
I have to apologize for all the errors on this blog. I am often interrupted numerous times before completion.
Rowan's lab results came back. He does have the "deletions" which are tiny parts missing in the chromosomes. This missing part is known for causing disabilities and autism. He now also has to see a geneticist. We will probably all have to get tested. I don't know what this means for him but I still hope that he will get better and better. I talk more with the doctor tomorrow. For some reason ...i feel like crying.
Last week I got a letter in the mail that said Arwen had to have a kindergarten screening and that her teacher was to be determined. In May, I had a meeting with a panel of people who had assessed her for kindergarten. This consisted of a psychologist, speech therapist, occupational therapist, district supervisor, and her itinerant teacher. (And probably a few more I'm forgetting)
We created a plan for her, deciding to place her at a school that offers a smaller special needs group, with an extra adult.
They also offer transportation with a para professional on the bus to assist her.
(I can't even tell you the terror I feel about trusting someone in this situation)
We did a little tour of the special needs room and therapy room. I was introduced to the teachers and therapist. I've been dreading the first day of school because I'm pretty sure Rowan starts on the same day.
Anyway. ..back to the screening letter. I thought it was odd that they screen her since she had already been placed. I thought because it said "teacher TBD" that they were meaning to place her based on this screening. My first thought was that they had made an error. I called. .. The phone rang and rang with no answer. I emailed the special needs supervisor for the district. She replied and said that all kindergarten students must take it. I understand that.
So, last night was the school orientation. What a disaster. The kids fidgeted through the principal's address, then we were off to meet her teacher and visit the classroom. When we looked on the door it only showed a room number for her class. .... We walked down to the classroom and it was dark. Confused,
checked a second time for her teacher's name but none was listed.
We found the assistant principal, who informed us that her teacher transfered and the new teacher officially starts on the first day of school. We did talk to a therapist and she helped Arwen feel welcome. We left discouraged with all her school supplies.
In a way, I was glad she was scheduled to have the screening so she could see the place again and get more familiar. I got everyone up and ready this morning. I left a few minutes early so I could go to the bank. At the bank the phone rang...
The school canceled the screening. ....30 minutes before we were to go. So now. .. We start school blind. I'm worried because I think Rowan starts the same day and there has been ZERO contact from his school. I've called and emailed a few times and was pretty much told to wait. School starts a week from today.
I have no information and two special needs kids to prepare.
I don't know what to think.
One day at a time. ......
This morning my husband gave my son a bowl of dry cereal to snack on before he left for work. Rowan loves cereal but I didn't really see him easy any. Later, as I'm doing the morning shuffle, Rowan says "want omelet. "
I immediately ran into the kitchen and cooked his omelet. Every word is a blessing and lime his speech therapist says, " if he asks, try to give him what he wants. "
I can't even express how grateful I feel. Yesterday he said " Get the ball. "
With every word. ..my fears are lessened and my heart is filed with joy.
Today, I tried the same as yesterday and got him to pee om the potty twice already! !!
And yesterday he said "get the ball"!!!
Major progress!
Even though Rowan has has no concept of going potty, I put him on it several times a day. We use the potty time app. We will watch videos, sing songs, do sign language, play the game, and read the books. Every time he sits he gets to put a sticker on a chart.
Yesterday, he peed a little bit and I shouted "Yaaaay! You peed! Yaaay!" He looked down and saw what was going on. Even though it was just a little squirt, I made a huge deal out of it.
Today he was drinking and peeing a lot. Earlier today, I put him on the potty and the same thing happened. We tried again this evening and he squirted a little. I shout "Yaaaay! You peed!" He looked down and understood. I said "Can you pee more? More Rowan. " He looks down and squirts. This went on for several minutes. ..I say "more" he squirts. In that one sitting, he learned to control his pee. This is huge!
I hope he will realize how exciting this is and keep trying! It's a miracle and I'm so proud of him!
September 2nd both kids start new schools. Arwen begins a full day kindergarten. This makes me nervous for so many reasons.
She must be taken to the potty every hour or so or she will pee her pants trying to get there. She struggles with using utensils to feed herself and is very picky about how food is presented. She has never gone anywhere away from us more than half day preschool.
I know that once she settles into a routine she'll be fine. This is a mainstream school but she will be with a small group for special needs. She will get many sensory breaks, have occupational therapy, speech therapy, and be included in social groups. These are all great things. My fears are the possibility of her being bullied by neurotypical children. ...And being labeled. This brings me to the dilemma if the Autism model school would be a better fit. I want her to feel as normal as possible and learn to fit in with neurotypical children. So I've been battling internally for some time on the matter.
Next week she has to take the reading test. She'll nail that because she can read like a first grader. Then placement. We go to the school orientation the next day. I truly hope she will adjust easily. I'm so scared for her. Then there's the issue of transportation. They offer transportation with a special helper on the bus for her. I know I should trust these people, but her complete lack of knowledge about where to go and what to do. ..coupled with her desire to run scares me to death.
Now the subject of Rowan. This scares me even worse. He starts preschool on the same day as Arwen. I have not received any contact from the school. I have called and emailed and was told to wait. This is a half day preschool with transportation included. I've debated on the transportation issue because my car is on it's last leg. I suppose it would be a learning experience for them...but I'm still afraid. Rowan has never been away from home without me or his dad. He is highly anxious around new people and places. He panics easily and has sensory problems, especially sounds. He is not potty trained. He barely communicates. This program will also offer occupational and speech therapy.
Like I said before, once a routine begins it will all be ok. I feel that I should be with him at first to transition him and also inform his teachers about his needs. The thing is....His third day I have to meet with his therapist. I know he'll panic. It makes me panic. I don't want to put him through that. I'm anxious to hear from the school about how all this will happen. I'm anxious for an orientation and meeting his teacher.
I need to stop worrying. I'm having a lot of trouble sleeping lately.
We also have to work in speech therapy, occupational therapy, behavior therapy and developmental visits outside school on a weekly basis. It's a struggle fitting it in.
I am very much like them in that I need a schedule, routine, and know what to expect or I get anxious. Without a schedule we just couldn't function.
I watched a video on facebook that was shared by The Autism Site Blog. This video was made by a family of a little boy with autism. I am going to type out the text from this video to share with the world because of it's accuracy. It really touched me because it is exactly what my kids are going through. People just don't know about autism and how kids are affected. Our trip to the mall yesterday was a prime example. My boy was unresponsive to people that spoke to him and they thought he was mad. Another friend made a comment to my daughter that she took literally and began to cry.
TEN THINGS EVERY KID WITH AUTISM WISHES YOU KNEW
1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person.
2. My sensory perceptions are disordered. Sensory integration may be one of the most difficult aspects of autism to understand, but is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes, and touches of everyday (that you might not even notice) can be downright painful for me.
3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to.) Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear " *&^%*&^%, Arwen. *&^%^*&^%$........." Instead , come speak directly to me in plain words: "Please put your pillow on your bed, Arwen."
4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say "Hold your horses, cowboy!" when what you really mean is "Please stop running."
Don't tell me something is a "piece of cake" when there is no dessert in sight, and what you really mean is "this will be easy for you to do." When you say "Rowan really burned up the track," I see a kid playing with matches. Please just tell me "Rowan ran very fast."
5 .Please be patient with my limited vocabulary. It is hard for me to tell you what I need when I don't know the words to describe my feelings.I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
6. Because language is so difficult, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me to learn.
7. Please focus and build on what I CAN do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive" becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.
8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it might be that I'm delighted to be included.
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
10. Love me unconditionally. Banish thoughts like "if she would just...." and "why can't she"
You did not fulfill every expectation your parents had for you and you wouldn't like to be constantly reminded of it. I did not choose to have autism. But remember, it is happening to me...not you. Without your support, my chances of successful, self reliant adulthood are slim. With support and guidance, the possibilities are broader than you might think. I promise you....I AM WORTH IT.
Patience, patience, patience. Work to view my autism as a different ability rather than a disability.
Look past what you may see as limitations and see the gifts that autism has given me. It may be true that I"m not good at eye contact or conversation, but have you noticed that I do not lie, cheat at games, tattle on classmates, or pass judgement? It's probably also true that I won't be the next Michael Jordan. But with my attention and focus, I might be the next Einstein, Mozart, or Van Gogh. They had autism too.
What I become won't happen without you as my foundation. Be My Advocate. Be My Friend. We'll see how far I can go.
The type that is in bold are the things that are most significant in the life of my family. Those are the things that really stood out and accurately describe what we are experiencing. I hope many will read this and have a better understanding of what it is like to have autism. Thank you for taking the time to read this.
Last visit to our ABA therapist, we discussed transition objects for Rowan. When we go places and he wants to stay, or play with toys at the appointments. When it is time to leave, he often has a meltdown. It makes things very stressful because I can't hear what the therapists need to tell me. I get kicked or he harms himself. Hitting himself is the most common action along with crying. He has an obsession with cars. His therapists have cars in the office for him to play with. When it is time to go, he doesn't want to give up the cars. A transition toy is an object to offer him that will avoid the meltdown and replace the toys he wants to take. I started a box by collecting some of his existing cars, as well as adding several new ones. I will hold his existing cars long enough for him to forget about them and they will seem like new toys. Every visit when it is time to go I will offer him one of these cars. When I give him a new car, I will take an old one and place it in the box. The cars will be in a constant rotation. I do this to save a little money. It works like magic! We are currently working on stopping his self injurious behavior. We began with data collection. Documentation what happened before, during, and after as well as the duration of the behavior. Looking for patterns and what the consequences were. For example: some kids crave deep pressure and their mother may hug them during an episode which positively reinforces the behavior. Thus they repeat the self injury because they get that hug.
We analyzed the data and set a plan. Our therapist gave me some excellent advice on how to handle certain situations. Our plan is shown in the pictures. I will also be continuing the data collection.
Today we went to the mall on a mission. I had planned to buy a shop for a cause ticket at Macy's. I also wanted to buy the Askate tote bag from the Vans store.
Both support Autism.
We also went to Sephora.
Rowan has never been able to even get through the door at Sephora without using a meltdown. This is because he has sensory problems. Sephora had bright lights, loud music, a hustle and bustle of awesome people, and an array of smells. Today was the first time he went in and remained calm. In fact, we were there for quite awhile. My older daughter was learning about her skin and make up and bought some too. We went to the play area. After that we headed out. .. but we had to stop and talk to a lot of friends at Macy's. He usually doesn't handle that well either. Today he was perfect. He even spoke to and looked at people. My little man is growing up. Today was a success!
So I've read that fifty percent of children with Autism wander off. The very scary thing is. .. Many of them cannot communicate. This makes them easy targets. I've also learned they're drawn to water.
Arwen decided to let herself outside a couple of weeks ago. It scared me to death. I panicked. Luckily, she did not leave the backyard. We had more than one serious discussion on the topic. She simply does not understand.
Yesterday, we took them to the science center. She wanted to go to a specific area but they were closing. We had to leave. She decided to take off running. I watched Rowan as her father went after her. He later informed me that she was laughing and looking back as he called her. She made a game of it.
It wasn't funny. It's a nightmare that plagues me. Another serious discussion took place. I'm still not sure she understands.
In the News this weekend a little autistic boy went missing. They later found his body in water. So sad.
There was also a teenage autistic boy who was called to a party and beaten up as others took video. The video went viral and people are taking a stand.
Autistic people young or old are easy targets. It's horrific. I'm scared to death for my children. What have we become as a people?
...so I haven't updated in a long time. Both of my youngest children have autism. I'm going to use this blog to document our daily struggles.
