Monday, October 11, 2010
Team Josh
My camera hasn't been working very well lately so I had to find an older picture of Josh but it's one of my favorites. I'm posting this picture of my beautiful boy, who also happens to have autism, because on Saturday, October 30, we're going to participate in a walk for autism. Autism Speaks is doing a walk in Albany. Here's the link for the Main Walk Page. and...
Here's the link for our Team Page
We would love it if you could join us on the 30th and walk with Team Josh. It's a great opportunity to show your support for families living with autism and to learn a little more about this disorder which affects 1 out of every 110 children, 1 out of every 70 boys. You can also donate to our cause or start your own team. Autism Speaks is a wonderful organization which according to their website is "dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families."
Living with autism is not easy, but there is hope and help, in part because of organizations like Autism Speaks. Living with autism can also be a gift as life with our Joshua has so amply shown us. Come be a part of the joy with us.
Thursday, April 29, 2010
Library
Josh was having a little trouble when we visited the library. He was so distracted and overwhelmed by all the fun things to do. He had trouble sitting still and sticking to any one thing. So one of his teachers created a visual schedule for him. These are particularly helpful for kids on the autism spectrum because of their difficulty with too much verbal information. I took a bunch of pictures of the library. Josh's teacher laminated them and put velcro on the back of each picture and each time we go to the library we sit down just inside the door and we let Josh decide in what order he wants to do things. He arranges the pictures by sticking them on a folder with more velcro on it.
We let him decide whether he wants to take the elevator or the stairs.
We show him a picture of himself quietly reading in the book area so he has a visual of appropriate behavior. This is far more effective than me just shushing him all the time and telling him sit still rather than climbing all over everything. He doesn't always process my verbal instructions. It's almost like he doesn't hear me.
He can also choose from fun activities to take a break from sitting still and reading with mom. We let him decide whether he wants to rock in the special chair or play on the computer.
But once he has made his schedule he needs to follow it. When he gets distracted, we point to the schedule and remind him of what we are doing. Now while this may seem rigid, this schedule helps Josh organize his thoughts which is very difficult for him. Without these visual cues, Josh is running from one area to the next stopping for only a moment and then moving on. I struggle to get him to focus and keep an eye on Jane. No learning happens. No books are read. No computer games are played. He's like a busy bee buzzing from one flower to the next but he's not getting any nectar. This schedule will allow him learn something from his library visits, to understand how libraries work and enable him to participate in library visits when he goes to elementary school.
The schedule has proved invaluable. We have made two successful trips to the library with Josh's teacher. Josh seems so much calmer. He feels he has control because he can make choices. We have been able to read one or two books together and play a few games. Jane is learning too and our visits to the library have become much more positive experiences.
A lot of children who have autism follow these visual schedules for all kinds of things like morning or bedtime routines, for visits to public places like stores or churches, and as a way to follow classroom routines. Children with autism are often unable to take cues from their setting, listen to given instructions and follow norms like most typical children. When they walk into a new environment, they have trouble discerning what is important information like rules and appropriate behavior and what is less important like the smell in the room or the color of the walls. A typical brain learns to filter out or push these lesser details to the back of the mind. But a child with autism often is overwhelmed by everything and often resorts to rote behaviors to shut out the sensory overload. For Josh this means, constant motion and sometimes random vocalizations, or withdrawal from the outward environment to some sort of internal place. He gets a glazed over look in his eyes and stops participating. I don't know where his mind goes but it is no longer with the group or the external moment.
This is only one part of autism and children with autism struggle with this to varying degrees. But it is helpful to know why they act the way they do at times, that these behaviors or not a sign of willful disobedience but an inability to process or fit into their current situation. The most wonderful thing about all of this is that children like Josh can be taught how to do these things. They do not have to remained locked away from the rest of us. With a little patience and extra support, they can become more comfortable and content in their environments. And that's a miracle.
We let him decide whether he wants to take the elevator or the stairs.
We show him a picture of himself quietly reading in the book area so he has a visual of appropriate behavior. This is far more effective than me just shushing him all the time and telling him sit still rather than climbing all over everything. He doesn't always process my verbal instructions. It's almost like he doesn't hear me.
He can also choose from fun activities to take a break from sitting still and reading with mom. We let him decide whether he wants to rock in the special chair or play on the computer.
But once he has made his schedule he needs to follow it. When he gets distracted, we point to the schedule and remind him of what we are doing. Now while this may seem rigid, this schedule helps Josh organize his thoughts which is very difficult for him. Without these visual cues, Josh is running from one area to the next stopping for only a moment and then moving on. I struggle to get him to focus and keep an eye on Jane. No learning happens. No books are read. No computer games are played. He's like a busy bee buzzing from one flower to the next but he's not getting any nectar. This schedule will allow him learn something from his library visits, to understand how libraries work and enable him to participate in library visits when he goes to elementary school.
The schedule has proved invaluable. We have made two successful trips to the library with Josh's teacher. Josh seems so much calmer. He feels he has control because he can make choices. We have been able to read one or two books together and play a few games. Jane is learning too and our visits to the library have become much more positive experiences.
A lot of children who have autism follow these visual schedules for all kinds of things like morning or bedtime routines, for visits to public places like stores or churches, and as a way to follow classroom routines. Children with autism are often unable to take cues from their setting, listen to given instructions and follow norms like most typical children. When they walk into a new environment, they have trouble discerning what is important information like rules and appropriate behavior and what is less important like the smell in the room or the color of the walls. A typical brain learns to filter out or push these lesser details to the back of the mind. But a child with autism often is overwhelmed by everything and often resorts to rote behaviors to shut out the sensory overload. For Josh this means, constant motion and sometimes random vocalizations, or withdrawal from the outward environment to some sort of internal place. He gets a glazed over look in his eyes and stops participating. I don't know where his mind goes but it is no longer with the group or the external moment.
This is only one part of autism and children with autism struggle with this to varying degrees. But it is helpful to know why they act the way they do at times, that these behaviors or not a sign of willful disobedience but an inability to process or fit into their current situation. The most wonderful thing about all of this is that children like Josh can be taught how to do these things. They do not have to remained locked away from the rest of us. With a little patience and extra support, they can become more comfortable and content in their environments. And that's a miracle.
Friday, April 16, 2010
Kindergarten
I'm not going to blog the thoughts of my heart and mind tonight. They are not pleasant. I'm grieving for the loss of a normal kindergarten for Josh. I'm grieving for the choices I have to make. But I do love this little boy and I always will and I know someday all will be made right. I trust God and that all of this is part of his plan. That is a powerful balm for my grief.
Tuesday, April 6, 2010
Support
Today Josh had swimming lessons at the YMCA with a little friend of his. I'll post something about that later when I have some pictures. After swimming lessons I like to take the kids to McDonald's and since it was raining I decided this would be a good day to let Josh run around in one of those germ-infested play places. I can't tell you how those make me cringe. But Josh was such a good boy, eating his lunch, then telling me he was done and hopping back and forth from foot to foot as if to say, "please, please let me go play over there." So of course I let him go and he had a blast. He was going to have to have a bath when we got home anyway.
After playing for awhile, Josh did something really amazing, something he's never done before. Josh came out of the ginormus play structure and looked around for me. I caught his eye and gave him a smile and a wave. He smiled back, made sure of where I was and then went back to playing. I turned to the other mothers and said, "Did you see that? He checked in with me?" One of my friends smiled and said yes. It may not seem like that big of a deal, but kids with autism often don't "check-in." Even as little babies, they seem lost in their own world. Josh was like this and it's part of the reason his diagnosis was moderate rather than mild autism. I didn't understand this checking-in phenomenon until we had Jane. When she played, she wanted me to play with her. She still brings things to show me and looks to me when she is unsure of something. Josh didn't do this. He could play forever by himself if you let him. In fact if I tried to interact or play with him, sometimes he would get frustrated and shut down. I just thought he was a deep-thinker, a mellow kid. Another name for "checking-in" is social referencing and it's a huge part of how we communicate as human beings. We look at each other, try to read reactions and emotions, seek help. This is a skill that Josh is learning because either he is unable to do it or does not wish to. I can't be sure. But it is a vital skill. I was reminded of this today at lunch.
I invited the mother of the little boy Josh has swim lessons with to come with us. Her little boy goes to Josh's preschool. At McDonald's we ran into two other mothers who have children at the preschool. The moms all sat together while the kids played and swapped stories of our experiences, fears, worries, triumphs. It was great! Having other moms to talk to who are going through similar experiences is such a huge part of this journey. I'm not sure how well I'd be doing if not for good friends who also happen to have children with special needs. I love the support group at Josh's school too. It's such a lifesaver. We don't have a great turnout each month and it makes me sad to think of other mothers who are uncomfortable reaching out through a support group. It's such a benefit to me that I want it for others but everyone has to do things in their own way. I absolutely respect that. Still, I'm grateful for all the support I've gotten in this process. I had a friend tell me the other day, "We moms have to stick together so we can stick it out." I love that. I don't know where it came from or if she made it up but it's so true, whether you have special needs children or not. I think as moms we spend too much time comparing and competing and not enough time patting each other on the back. Motherhood is the hardest job of all and we need all the support we can get.
Friday, April 2, 2010
Our Blue Party was a success tonight and I am looking forward to making it an annual thing every World Autism Awareness Day. I'll post pictures later but right now I am kind of "autismed-out" and exhausted. But seeing how this day and this party helped kick off Autism Awareness month I thought I should post something autism-related. Toys R' Us is doing a special campaign this month to raise money for Autism Speaks, a wonderful advocacy organization. There is a page on their website about the faces of autism with the words of parents. I think it is really beautiful and expresses so many of my feelings. Here's the link. Enjoy!
Wednesday, March 31, 2010
Whiz Kid
Today Josh went pee pee in the potty for the second time at home. He has also apparently accomplished this feat at least once at school. As I write this, I can only think of the mortification my son will feel someday at this somewhat public revelation. Maybe I will hide this blog from him. I don't want his autism to ever make him feel like a specimen. But these autism stories need to be told.
The reason I bring up the toilet habits of my four-year-old son is because this is something that has been on my mind a lot lately. My son is almost four and a half years old and I'm still changing diapers. I've heard it said to comfort diaper-weary mothers or moms engaged in the struggle of potty-training that "Your child won't go to kindergarten wearing diapers." A sort of, the end is in sight mentality. Well, my child may very well start kindergarten this fall in diapers. Luckily he will be in some kind of program that will allow for that and will assist in my efforts to potty-train him. But every now and then the mere thought of my son starting kindergarten in diapers makes me have one of those moments where I can't breathe because it feels like an invisible hand has grabbed a hold of heart and is squeezing it tightly followed by a vigorous shake for good measure. Once that's over I can breathe again and start over with my life. I know we are going to be able to conquer this potty-training milestone just like we have conquered other delayed milestones, but I have no idea when. That's the tough and slightly comforting part. Josh does things on his own schedule and my job is to support him and be patient until then.
The reason I bring up the toilet habits of my four-year-old son is because this is something that has been on my mind a lot lately. My son is almost four and a half years old and I'm still changing diapers. I've heard it said to comfort diaper-weary mothers or moms engaged in the struggle of potty-training that "Your child won't go to kindergarten wearing diapers." A sort of, the end is in sight mentality. Well, my child may very well start kindergarten this fall in diapers. Luckily he will be in some kind of program that will allow for that and will assist in my efforts to potty-train him. But every now and then the mere thought of my son starting kindergarten in diapers makes me have one of those moments where I can't breathe because it feels like an invisible hand has grabbed a hold of heart and is squeezing it tightly followed by a vigorous shake for good measure. Once that's over I can breathe again and start over with my life. I know we are going to be able to conquer this potty-training milestone just like we have conquered other delayed milestones, but I have no idea when. That's the tough and slightly comforting part. Josh does things on his own schedule and my job is to support him and be patient until then.
Wednesday, January 13, 2010
Funny Things
I want to try something new on this blog. I am going to blog about the funny and sweet things Josh does to bless our little family. Even though Josh has autism, he brings a lot of joy to our lives and I want to make sure to convey that part of our story. Josh adores his little sister. Right now they are quite close and I am going to celebrate that for as long as it lasts. Here are two little stories I jotted down in my journal recently.
January 9, 2010
Today Josh wants to play with Jane all the time. She had to go down for a nap but he still wanted to play. After she’d been in her room for a while, he asked me where she was. I told him she was sleeping. He asked me where and I told him she was in her room. I went on my way and a little later I heard the door to her room close. Then I heard both kids laughing. I went upstairs to check on them and found Jane lying down in her crib. The lights were on and Josh was in her crib with her pushing on her chest and telling her, “You gotta wake up. You gotta wake up.” Luckily she was laughing and not upset.
January 13, 2010
Today I heard Josh wake up and come out of his room. I was still pretty tired so I stayed and bed and listened to what he was doing. Earlier this week, Josh woke up and went downstairs. I was barely awake and so I don’t know how long he was down there. When I finally got up and got Jane and went downstairs, I asked the kids what they wanted for breakfast. Josh told me he already had cookies for breakfast. He had climbed up three shelves in the pantry to reach the cookies and there was a definite path of chaos on each shelf as proof of his effort. Besides that he had chocolate remnants all over his mouth. This cracked me up and so today I wanted to see what he would do. This time he went into Jane’s room. He climbed into her crib and snuggled under her blanket. By the time I peeked in the doorway, they were both cracking up and talking to each other. I watched them for a while because it was just so darn cute but then they saw me and we had to start the morning routine. I am so grateful for all the joy and love Josh brings into our home.
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