I need to be better at blogging. I've been so busy lately, Wes is on vacation this week and Tim and I are getting ready for our trip to Vegas.
Oh, did I forget to mention that? Oh yeah, we're off to Vegas for 4 nights. Tim has a work conference and I'm tagging along. The boys will be staying at our house with my mom and my mother-in-law will be helping out in the evenings. We wanted Wes to be in his home because he'll be back at school and the more his routine stays the same, the better. This is really hard for me. I haven't really been away from him since I had Casey a year and a half ago and even then, I pretty much saw him every day. Otherwise, it was one night here or there. This time, I'm across the country and a 5+ hour plan ride away! Needless to say, I'm very anxious for many reasons. These thoughts keep going through my head and they make me more anxious. All the what ifs that plague me on a daily basis. I know the kids will be fine and they will have a ball with the Grandmothers, but... There's always a but.
Wes has gone to two birthday parties. Z's party was a big hit with him. He did a lot of running and scripting, but I managed to facilitate a good amount of play. The theme was Carnival and they had lots of cute carnival games, face painting, and balloon hats. Wes even ate a cupcake without the frosting! The second party was a flop. Tim took him to that one and he said no one really even noticed he was there. It was a combo party for both the little girl in his class and her big sister. They had a bounce house and some treats. Wes really enjoyed the bounce house. No one greeted him or even bothered to include him in anything. How disappointing. There will be other birthdays and even his own to look forward to.
Casey is going through that word explosion and boy is it amazing. Occasionally, I feel sad that we missed this with Wesley, but it's more important to enjoy it with Casey then dwell on what could have been. Just the other day, Casey pointed up the stairs towards the bedrooms and said "bwanet". I had no idea what that was until he pointed to Wes with his blanket and it hit me. It was the cutest thing. He's labeling everything and so inquisitive. It's such a precious time for me and I'm soaking it all in. He's still in the throes of the terrible two's. He really is exerting his independence and while I'm all for him doing things on his own, it comes at the most inopportune times. Ah, the joys of parenting.
Wes was approved for the summer program at school and will be going three times a week for 6 weeks, 2 hours a day. We knew he would from the beginning. I had a talk with his teachers and the preschool coordinator and told them I need more communication. The teacher has been writing in his book maybe once a month or even two months. No one really discusses things with me and some mornings, I feel pushed out the door. I'm going to come up with a checklist (I'll be contacting you for help on this J) so it's easier for them to let me know what his days are like and what he's currently working on. I want to be a part of his team as much as possible.
So that's all from this side of the street. I will surely post when we get back from our trip.
Tuesday, April 22, 2008
Thursday, April 10, 2008
A near perfect day
Tim took today off and what a near perfect day it was. I say near perfect because spending 2 hours in the Department of Social Services office was not fun. Wes went to school as usual, but after nap, we decided to take a field trip. It was finally shorts and t-shirt weather (for Tim anyway) and we were not staying indoors. Our trip was to the beach. The kids had some pent up energy from winter and needed to burn it off. So with shovels and pails in tow, we were off. The kids had a blast. After spending some time watching the surf and playing in the sand, we went to the playground for awhile. It was quite busy with kids. The only hiccup was Casey whining about the blowing sand. The video above is of the kids having fun. You might want to turn down your volume because at one point, I had to yell for Wes to back up from the water. Enjoy.
Wednesday, April 9, 2008
New doctor
We just came from meeting with the boys new doctor. OH MY GOODNESS! I love her! She was incredible. I never knew a doctor could be like that! I was seriously waiting to be rushed and not really heard. She heard every word I said. She totally understood my concerns and agreed with me on almost everything. We made a game plan that we're all comfortable with and finally I know where we're headed. It feels incredible. We're going to work on Wes' bowel issues. She gave us a prescription for Miralax for his constipation, prescription for Pediasure , and a prescription for a multi-vitamin. We changed from Pediasure to Carnation Instant Breakfast because it was cheaper and seemed to have the same stuff as the Pediasure. I hope that our insurance will pick these up for us until Wes is approved for Medicaid through the Katie Beckett Waiver. She wanted to give us a prescription for diapers too, but I told her Medicaid will only cover diapers over the age of 4. Only 6 months to go for that.
We decided to put a referral to one of the best Special Needs Gastroenterologist in the state of Mass as a precaution. It can take 6 months to a year to get an appointment and we figured if Wes does well on the Miralax, then we can cancel the appointment. If he doesn't then at least we already have one. Sounds like a good plan to me.
I can't explain the relief and weight that's been lifted off my shoulders. I've been walking around lost for the past year and not knowing what to do next in terms of Wes' medical needs. His previous pediatrician wasted a year for him and that just sucks. But, no use dwelling over the past. He's on a better path and that's all I want to concentrate on.
Thank you again to 'J'. You know who you are and I can't thank you enough for mentioning this doctor.
We decided to put a referral to one of the best Special Needs Gastroenterologist in the state of Mass as a precaution. It can take 6 months to a year to get an appointment and we figured if Wes does well on the Miralax, then we can cancel the appointment. If he doesn't then at least we already have one. Sounds like a good plan to me.
I can't explain the relief and weight that's been lifted off my shoulders. I've been walking around lost for the past year and not knowing what to do next in terms of Wes' medical needs. His previous pediatrician wasted a year for him and that just sucks. But, no use dwelling over the past. He's on a better path and that's all I want to concentrate on.
Thank you again to 'J'. You know who you are and I can't thank you enough for mentioning this doctor.
Tuesday, April 8, 2008
Birthday Invites and Therapeutic Listening
Yesterday, when I picked up the mail, I noticed a blue envelope with no address on it in our mailbox. It looked like a birthday card envelope and it had 'Wesley' written across the front. I opened it up and realized Wesley had his first birthday invitation and it was from his friend Z! I was so excited for him! It's a carnival theme and I can't wait to take him! I'm going in knowing that we might have to leave before it ends. I don't want Wes to meltdown from overload and ruin the festivites. I'm anxious to really work with him in this social setting. I'm not bringing the tiny monster (A.K.A Casey) so it will give me a perfect opportunity. That in itself might cause some overload, but it's worth it for him to be included in this. Oh Happy Day!
We started the TL tonight. He seemed a bit figidy and every echolalic but it was our first night at home. We will be doing it twice a day for 30 minutes. So before breakfast and an hour before bed. He enjoys listening to the music and occasionally he'll giggle. I'm going to keep a seperate journal of his changes to keep track. I hope we have good results with this.
We started the TL tonight. He seemed a bit figidy and every echolalic but it was our first night at home. We will be doing it twice a day for 30 minutes. So before breakfast and an hour before bed. He enjoys listening to the music and occasionally he'll giggle. I'm going to keep a seperate journal of his changes to keep track. I hope we have good results with this.
Friday, April 4, 2008
Making Progress
Yesterday was the meeting for Summer Program and to go over the progress Wes has made since starting school. He does qualify for Summer Program which we knew he would and we were told from the beginning. He shows enough deficit that he could regress over the summer. He will have 3 classes a week, each 2 hours long for 6 weeks. I think that's sufficient. It also gives us two days to do fun activities and join plenty of social situations.
So onto the progress. Wes has achieved most of his goals set for the first 3 months. The social piece was the area of least progress made. We weren't really surprised there. The other area, where he made satisfactory progress was in Academics. His goal was to label 3 different colors or shapes, and point to 5 different colors or shapes. While we all know he knows these things, he labels and points sporadically. They said they couldn't count that as achieved because he isn't consistent. I understand that. I don't like it, but I understand it. So all in all, he's doing very well. I'm so proud of how hard he works.
I asked his Speech Therapist at school if she thinks he would benefit from more speech outside of school. She said she sees such wonderful progress, that she didn't think it was necessary. She is working really hard on getting him to use more nouns and verbs, so we are doing the same at home. Slowly, we are introducing full sentences using both nouns and verbs. He will catch on quickly.
My mission this summer is to get Wes involved in lots social situations. It's not always easy when I'm by myself. Casey has become quite the handful and most times, I'm trying to keep him from running away or doing something he's not supposed to. The minute I get involved with Wes, I have to stop to drag a 1 year old off a chair or from running into the street. God love him!
So onto the progress. Wes has achieved most of his goals set for the first 3 months. The social piece was the area of least progress made. We weren't really surprised there. The other area, where he made satisfactory progress was in Academics. His goal was to label 3 different colors or shapes, and point to 5 different colors or shapes. While we all know he knows these things, he labels and points sporadically. They said they couldn't count that as achieved because he isn't consistent. I understand that. I don't like it, but I understand it. So all in all, he's doing very well. I'm so proud of how hard he works.
I asked his Speech Therapist at school if she thinks he would benefit from more speech outside of school. She said she sees such wonderful progress, that she didn't think it was necessary. She is working really hard on getting him to use more nouns and verbs, so we are doing the same at home. Slowly, we are introducing full sentences using both nouns and verbs. He will catch on quickly.
My mission this summer is to get Wes involved in lots social situations. It's not always easy when I'm by myself. Casey has become quite the handful and most times, I'm trying to keep him from running away or doing something he's not supposed to. The minute I get involved with Wes, I have to stop to drag a 1 year old off a chair or from running into the street. God love him!
Thursday, April 3, 2008
WHOOPPIEEE
Finally, enough snow has melted and the weather was decent enough to go to the playground! I've been waiting for this since November. I hate being stuck indoors and I hate being stuck indoors with two cranky kids even more.
Wednesday, April 2, 2008
Autism Awareness
April is Autism Awareness Month. It's the perfect time to spread the word about autism and the special little people in our lives. We have ordered wrist bands from our local chapter of the Autism Society. We plan on passing them out to our friends and relatives to wear proudly. Tim and I already wear our pins and Tim wears the t-shirts we bought last year, plus we each have the car magnets on our cars. I don't keep Wes' autism a secret. Sometimes when strangers try to talk to him and he's off in his own world, I tell them. Whether they know what it is or not, he's part of our society so they're going to have to accept him.
I'll try to blog more about autism and autism awareness this week.
I'll try to blog more about autism and autism awareness this week.
Tuesday, April 1, 2008
Going to the dogs
There was a news story on Good Morning America this morning. It was about children with autism and service dogs. You can read and see the story here . The dogs that are used are typically Labradors. They are very kind, patient and friendly dogs. We had two different labs when I grew up.
While I find the relationship between boy and dog common, it's quite interesting how their bonding brought on great results with the autistic child. In my opinion, I think the child has an easier time reading the dog because they don't give facial expressions. Their body signals how the dog is feeling, and I think the dog can sense how the child is feeling by their body signals. The other thing I noticed was that the children were older then Wesley. I'd say 10 years or older. It might be something we look into as Wesley gets older. Of course money is a big factor.
While I find the relationship between boy and dog common, it's quite interesting how their bonding brought on great results with the autistic child. In my opinion, I think the child has an easier time reading the dog because they don't give facial expressions. Their body signals how the dog is feeling, and I think the dog can sense how the child is feeling by their body signals. The other thing I noticed was that the children were older then Wesley. I'd say 10 years or older. It might be something we look into as Wesley gets older. Of course money is a big factor.
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