Tuesday, September 29, 2009

OT and Speech Eval today

Joey had another great day at OT. They worked on increasing upper body strength by doing wheel barrow exercises and climbing. Joey tried everything. On one thing that he was scared to climb around, the therapist assured him he didn't have to go through it and he was ok. He always afraid of losing his balance which goes back to his vestibular issues.

Then, we were off to Fry's for our normal Tuesday morning killing time routine. Joey didn't help me scan and bag items today but he was on his best behavior. On the way out, we ran square into the Monsters vs. Aliens DVD display. He is been waiting for months for this to come out on DVD. How could I say no to him?

After Joey got off the bus and we had some relaxing time (and movie time), Vanessa (from Horizon Pediatric - same place he goes for OT) showed up at our house to do a speech evaluation. We have been back on the wait list for speech since May but now that Joey has been approved for DDD and they require a formal speech evaluation, I figured let's at least get this out of the way.

She performed some tests similar to the ADOS and evaluation tests they do at Melmed. She also asked him to make several different sounds and simply monitored his play. She said that he is doing great and very age appropriate in his speech. She also said that he does not show spectrum-like tendencies. All of this was great news. She is still going to recommend speech therapy because the extra help couldn't hurt but she did say that he is ready for community preschool.

Overall, it was a fantastic day!

Friday, September 25, 2009

Maybe I should just say "it's been a great week!"

This week has been a great week and it was capped off by another great day on Thursday (9/24). I took Joey for his karate evaluation after school. He wasn't a fan of watching the class but I figured I would try him in a one on one scenario. It didn't work, but I give him a lot of credit for going in there, voicing his opinion and then agreeing to watch the class for a few minutes (hey, they had numchucks - who doesn't like that?).

After that, we headed to the "eating store" to pick up some groceries and then headed to his 1st T-ball practice. Joey was hesitant and automatically wondered where his Daddy was. His Daddy works in baseball and is a baseball fan so he introduced Joey to baseball at a young age (he showed him a baseball the night he was born). I assured him his Daddy would be coming. I purposely had him arrive a little late so that Joey would join the team instead of just wanting to play with Daddy on the slide. He went over to the team and sat in a circle with the other boys and 1 girl. He said his name when asked and told them his favorite food was Lunchables (the other kids mostly said cookies).

Then, they warmed up by doing stretches and jogging around the field. After that, they broke in to 3 teams and then rotated between them. First up was one on one catching. Then, they practiced catching in the outfield. After that, they took turns at bat. Unfortunately, by that time, it was getting dark so I wasn't able to get good video or pictures.

Overall, the practice was a success.

On Friday (9/25), we had our 2nd of 4 sessions with SARRC for Hab-M/ABA. It was tough because I showed a lot of tough love, holding strong to what I say and the consequences for Joey's actions. The most important thing I wanted to work on was playing catch. The 1st time, he didn't want to catch at all; he just wanted to hit the ball with his fist. The 2nd time we went out there, he did say that he couldn't catch the ball but he still tried. I wasn't sure if it was frustration from the day or because he really was having trouble. I don't want Joey to get frustrated so early on.

All in all, it was a great week. Many mini milestones were reached. I'm so proud of my Joey. We capped off the week with a 2nd showing of Cloudy with a Chance of Meatballs...this time in 3D!

What a great day!

Wednesday (9/23) was a milestone on many levels!

I picked Joey up from school instead of having him take the bus because I wanted to get an earlier start at the hairdresser's so we could get to Neema and Grandpa's faster. The teacher greeted me with some exciting news: both Ms. Martin and Jennie, the speech therapist, feel that Joey has far surpassed his peers cognitively and is ready for community preschool (I felt he was ready in August but being at a new school, they needed time to evaluate him). This is an amazing milestone! I got teary-eyed as we walked to the car. My little man has grown leaps and bounds in the last year. It reminds me that everything does happen for a reason and I'm glad I have been able to be home with him to get him the services he needs. Unfortunately, on this day, I got a call from a possible new employer and an email from an old employer so it was a wake up call that my being home may come to an end.

Then, we headed to Cool Cuts for Kids. Joey hates getting his haircut. As usual, I told the girl "no trimmer and no buzzer." He sat better than he ever did so she asked me if she could try the trimmer. Joey was scared but she showed him that it was harmless by letting him feel it. He giggled and said it tickled. He let her clean up his neck and even around his ears!!! What a huge step for Joey!!

We then headed to Target because I promised him a trip to the "red store" to get Pop the Pig. I reminded him we had to leave quickly and he didn't fight me to stay and look at every toy. This is definitley a first!

Later on, at my parents' house, Joey cut his wrist while building a Lego. He actually showed it to me and asked for ice and then a band aid. He usually just runs and hides. Of course, later after his bath, he wanted long pajamas on so that no one could see his "owie."

Tuesday, September 22, 2009

A day of firsts

Today was a day of firsts for Joey. He rode home on the bus for the first time this school year. He used to take the bus for 2 years, to and from preschool, returning to the onsite daycare at my job. He stopped in April of this year when I stopped working.

The teacher reminded him when I dropped him off that he would be taking the bus home. He was fine with it (or he was just ignoring his teacher). Either way, he loved it! Being the only one that doens't take the bus home, his teacher felt that it would help him fit in more with his peers and not feel left out. Of course, I couldn't find the video camera in time (the bus was early) but I did take lots of pictures!

After a little relaxation time, we headed to a marital arts academy for their Lil' Dragons class. He didn't like the yelling but sat and watched the class. We will try again.

Monday, September 21, 2009

SARRC's Jump Start Program ~ Wrap-Up

Yikes! I've dropped the ball! With so much going on, I didn't continue my posts about the terrific Jump Start program at SARRC.

Sunday, September 20, 2009

Behavioral Therapy at SARRC

Last Friday, we started a new group of sessions of ABA at SARRC. I love that place. This is $50 per hour for 8 sessions. It is definitely worth the money. This would essentially take place of Hab-M (Habilitation with a Master's Degree) which he is not eligible for past the age of 3 (makes no sense)!

This is really a continuation of the Jump Start program that we did in July and August. We worked on turn taking, using words for communication and transitions. I look forward to our next session!

Daddy's Return

Joey's father returned on Friday night. I use the word "father" loosely as my ex really doesn't care about being one. It is now Sunday morning and I am already truly disgusted about how my ex has acted and it's effect on my son.

Ben walks in the door Friday night and Joey runs into his arms. His first words? "I love your face, Daddy." He is overjoyed that his father has returned home from being gone for 5 and a half months. Ben sleeps over and they enjoy the day together Saturday, which included a movie with me as well.

Come Saturday evening, Ben asks "how long do you need me here?" I guess after getting a taste of his girlfriend earlier, he can't wait to go back for more and "parenting" (I use that term loosely too) has taken a backseat. I told him that Joey hears and absorbs everything and that you should never say that in front of him. But this is coming from a man who told me earlier that it was my new husband's job to provide Joey with a good life.

I told Ben he was free to go anytime. He had already told me that he was staying at his girlfriend's house overnight because it would be easier to get to the stadium in the morning. How I asked, since I live 5 minutes from the stadium. He never answered...even after I asked that question a few times. I had told him earlier that he couldn't stay for the week until his apartment was ready. Not only had he never asked if he could stay with us, but I felt it would be bad for Joey, as he might get used to seeing Daddy everyday. Of course, Ben uses this as an easy way out and says "it's better for Joey if I leave tonight and stay at Shannon's." No, it's just better for your dick which is all you think about.

When my husband and I returned home from our date, I was very sick from the sushi so I didn't talk to Ben before he left. Joey was asleep. When Joey and I woke up this morning, he said "Mama, where's Daddy?" I told Joey that he's at work and it was at that point that Joey decided he would have nothing to do with me for the rest of the day.

I called Ben to tell him and he said "oh, that's because I told him he could come to work with me today." What!!?? I asked why I didn't know this and he said it was because I was too busy being sick last night so he couldn't tell me. Um...why couldn't he have texted me that?? I told him that maybe he should take Joey for the week and he said ok and then said "well...would I just drop him off in the morning? Wait...I have no place to stay." I told him to "get a hotel room and figure it out" and then I hung up.

I am truly disgusted. It didn't take Ben long to disappoint all of us. Sometimes I think he doesn't know better, especially when he truly acts like he might have Asperger's, but then I see through the facade. I can tell by the nasty looks he gives and the jokes he makes that he is well aware of the scumbag he really is.

Thursday, September 17, 2009

MRI results today

If I said I wasn't nervous right now, I would be lying BIG TIME. Today could be life changing. I already have IBS and this ordeal has brought it to a whole other level.

Sonoran Living Segment

I did it! I was super nervous but I pulled it off! It was kind of exciting being behind the scenes of a TV show.

Here's the link to the segment:

My 6 minutes of fame are up. Now back to reality:)

I have to add that Joey was so cute! Bryan told me that he watched my segment live and waved and said "hi Mommy" and also blew a kiss to the TV screen. When I picked him up from my Dad's house, he said (on his own), "you didn't say hi to me on the TV. That's ok; you can do it again tomorrow." I love him!

Tuesday, September 15, 2009

Sonoran Living TV Show

Yikes! I will be on Sonoran Living tomorrow morning, September 16th, from 9-10 am! I'm nervous! But it's a nice break from the stress of the week.

Here is the link to the outline of my segment! See you tomorrow!


MRI today!

Belly explosion

9/9/09 ~ Wednesday ~ Day 7 of Operation Poop Out.

I brought Joey to my parents after school. He had a diaper on, waiting for the explosion, because he has yet to poop on the potty. I changed his diaper and ran to CVS to pick up his prescriptions. I called my parents after about 10 minutes of being gone to check on Joey and let them know that I was still waiting. They said he was ok and had not pooped. I returned to their home about 10-15 minutes later and my Dad answered the door. He told me Joey had an explosion and was in the tub. How did that happend while I was away for such a short time?

Before I had left for CVS, I had received a return call from Dr. Ursea's assistant. She told me that the doc wanted to admit Joey. I begged for another X-ray before we admitted him. He had had some big movements. It would have been such a traumatic experience for him, especially with him having to go to the hospital the following week. Plus, last time we had to do this, it took about a week for it to work. I needed more time. Apparently, so did Joey!

2nd day of OT / PT Eval

Saturday, September 12, 2009

Free Autism Workshop today in Scottsdale

Here is a 3 hr Saturday workshop in Scottsdale!

Autism Saturday Workshop S*CCEEDS registered, ADE approved

Saturday September 12th for Parents and Professionals Sponsored by Arizona Teacher’s Professional Development and the East Valley Aspergers Asc.

This 3 hour workshop will teach about the symptoms of and treatments for Autism/Aspergers/ PDD. It will cover physiological, psychological and developmental factors in Autistic behavior. Also covered will be some of the predispositions, causes and triggers of Autism.

$30 enrollment fee includes lunch and 3 hr CEU certificate (FREE to Parents)

Time: 11:00 a.m. – 2:00 p.m.

Saturday September 12th, 2009

Held at Buster’s restaurant, 8320 N Hayden Rd Scottsdale, AZ 85258480-941-5850 (North of Via De Ventura on Hayden)

To reserve seating call the Healing Pathways Medical Clinic 480-820-6695

Saturday, September 5, 2009

Conflicted about Obama

Many Autism Moms don't like Obama because he wants to make vaccines mandatory. I haven't read enough about it to know what his stance is. My son has been and continues to be vaccinated. I agree with the Green Your Vaccine movement and urge parents to pay the extra money to separate the MMR. However, I must say that Obama is focused on the epidemic and is paying more attention to it than any other disorder or disease.

Here's the link from Autism News:

Autism screening tops Obama’s medical to-do list
September 5th, 2009
The Autism News English
By Nancy Shute U.S. News & World Report

Autism is the only disorder or disease mentioned explicitly in Obama’s 24-point agenda on Whitehouse.gov . Heart disease and cancer don’t get the call. Neither does diabetes, or other chronic diseases.

But there are four hefty bullet points addressing autism. Obama called for:

1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.

2. “Life-long services” for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.

3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.

4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren’t diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.

That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.

The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn’t appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president’s inaugural address won’t mean big cuts in funding.

Still, universal screening for autism will be a huge challenge. There’s no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.

The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don’t get around to doing those screens, and until very recently the recommended tests weren’t sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.

Source: http://www.fox13now.com/lifestyle/health/sns-health-autism-obama,0,4022260.story

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

Wednesday, September 2, 2009

His poor little belly

I took Joey to see Dr. Ursea at Phoenix Children's Hospital this past Monday. I soon found out there is a reason it is so hard to see her: she is the best! I have heard about through the Autism community and I have been told by other doctors that she is the best pediatric gastroenterologist in the Valley. She was so worth the wait!

Dr. Ursea was very thorough and asked a lot of questions. Her demeanor was wonderful with Joey. She knew he was scared and understood that he has sensory issues. She even skipped the rectal exam because she didn't want to put him through more discomfort and stress.

She told me that he probably didn't have allergies but it's best to test for them anyway so we will have bloodwork done. She also advised me that she will have a feeding specialist perform an evaluation and also have a nutritionist call me to discuss any concerns with his diet. She ordered an X-Ray and we had it done there right away. The tech was so good with Joey and helped to comfort him. She even showed him pictures of his insides on the computer screen. He loved it!

I was told to call back two days later so that is exactly what I did today. They were so quick to return my call. The nurse even said that she couldn't get in with Dr. Ursea to discuss the results but wanted to call me right away. Joey's colon is dialated into his abdomen. The course of action is 2 capfuls of Miralax in 16oz of clear liquid twice a day until we get chicken broth-like consistency. We need to get this working within days or they will admit him by Monday (Labor Day) and put a tube down his throat! Hasn't this poor little man been through enough.

We are starting Operation Poop Out tomorrow morning!

OT Report/1st Day of OT

Walking for Autism

Hello! It is that time of year again! Joey D's Crew is doing 2 walks this year: the Zoo Walk for Autism Research and Walk Now for Autism Speaks.

The Zoo Walk raises money for the Autism Research Institute (http://www.autism.com). Last year, we raised $1225 dollars, exceeding our goal of $1000. Our goal this year is $1000.

The link to donate is: https://www.ariautism.com/zoowalk/phoenix/donations.html

Don't forget to click on Joey D's Crew and don't forget to print out your receipt for your taxes after you're done!

This is our 1st time doing the Walk Now for Autism Speaks. This is a great organization that was started in 2005 and has helped to bring resources and awareness to parents across the country (www.autismspeaks.org). Our goal is $300.

The link to donate is: http://www.walknowforautism.org/az/joeydscrew
This will bring you to our homepage:)

Thank you so much for helping out Joey D's Crew. Even $5 will make a difference.


Michelle & Joey