Monday, February 16, 2009

Upcoming Events on the Calendar

NEW... West Side Autism Support Group
Wednesday, February 18th from 6:30-8:30 pm

Parents of children with autism spectrum disorders (autism, asperger's, PDD-NOS) are invited to come to a meeting of this new group. The initial meeting is sponsored by the Autism Society of America - Greater Phoenix Chapter (ASA-GPC), since we have had many requests from parents in the West Side of Greater Phoenix to help form a new group there.

The meeting will be led by James Adams, Ph.D., President of the ASA-GPC, and autism researcher at ASU. The meeting is open to all parents, professionals, and adults on the spectrum. The event is free, and snacks will be provided.

Date: Wednesday, February 18, 2009
Time: 6:30 pm - 8:30 pm
Location: Wee Care Corp., 12409 W. Indian School Rd. #C306, Avondale, Arizona 85396
(East of Dysart on Indian School in the Indian School Crossings Building on the south side of the road.)

Please RSVP: 480-940-1093 or (so we know how much food to bring)

Finding, Funding & Keeping the Services
Your DDD Child Needs

Three Session Workshop • Saturday, February 21, 2009

1) Medicaid, EPSDT & Wraparound
Learn how successful therapies for DDD children in Arizona can become available at no cost to parents (regardless of family income) to help reduce or eliminate symptoms and challenging behaviors.

2) How to Get the AHCCCS Health Care Services Your Child Needs
Learn how to navigate the ALTCS health care maze, including what to do if you are facing the appeals process for a denial, reduction or termination.

3) Excellent Behavioral Support for Children in Their Schools and Homes
EPSDT & BHRS Funding will be thoroughly explained. You will learn how to write individualized treatment plans so that “Medical Necessity” is established, how to access Medicaid funding for BHRS via the EPSDT mandate and how to keep your funding until the treatment plan is finished (without having to water-down treatment).

More information & to register...

ASA-GPC's 10th Annual Autism/Asperger's Conference
April 4-5, 2009 • Glendale Community College

Saturday Keynote: Translating Research into Effective Intervention Practices for Individuals with Autism Spectrum Disorder, Diane Twachtman-Cullen, Ph.D., CCC-SLP. The explosion in high-quality research has yielded findings that directly relate to intervention practices that spell success for students with autism spectrum disorders (ASD). This presentation will address the latest research findings into brain function that directly relate to the educational programming needs of individuals with ASD. Practical in focus, the presenter will "connect the research dots" to create intervention plans that attendees can readily apply in the home and school setting.

Sunday Keynote: Navigating the Social World: Managing emotions and stress in students with Asperger's Syndrome, high functioning autism, PDD-NOS, and related disorders, Jean McAfee, M.D. Jeanie McAfee, M.D., will introduce the step-by-step emotional skills and stress management programs presented in her internationally acclaimed book, Navigating the Social World. Attendees will learn to use elements of cognitive behavioral therapy, applied behavioral therapy, and other techniques to help individuals with high functioning autism and related disorders to identify and deal with stress, anger, and other emotions.

More details & information or download a brochure.

Monday Meltdown

I wanted to take part in a 3 week class about Autism taught through Joey's school. It would be for 2 hours each day for 3 weeks (always on a Monday). The first Monday worked out well because Joey fell asleep before we reached Grandpa's house so he could watch him. Joey stayed asleep the whole time. On the second Monday, Joey wanted to stay with me and didn't want to be dropped off at Grandpa's so I missed that class. I thought I had the 3rd Monday all figured out. I would drop Joey off at speech therapy (a place where my Dad has picked him up) and my Dad would pick him up. Sound easy enough? Think again.

I called my Dad after dropping Joey off at speech and told him all the things he had with him and what my Dad needed to make sure he had when he left the clinic. I also told my Dad that if there were any problems to call me. I gave him an out.

My Dad was supposed to get Joey at 4:20. By 4:25, my phone was blowing up. My Dad had texted me and before I could finish reading it, he started calling me. I answered and said "I'm on my way" and hung up the phone. He then called back because he couldn't hear me. Unfortunately, I was in a library for the class and couldn't get out fast enough. He called back and I answered the phone as I was walking out the door. He said Joey wouldn't go with him and that I needed to come and get him.

Here's my frustration: It's not like I ask them to watch him so that I can get my nails done. I am taking a class to learn how to take care of my son better! What would he have done if I was in the hospital or far away?

When I got there, my Dad was sitting in his car, unable to see Joey from where he was parked, and Joey was on the deck at the clinic, standing in the rain. I think he got scared that I dropped him off but wasn't there to pick him up. My Dad said that he didn't want to pick him up and put him in the car because he was afraid that people would think he was kidnapping Joey, even though they knew he was coming to get him.

I personally think my Dad couldn't be bothered dealing with Joey's mood. What really pissed me off is that the therapist, Rosie, took Joey's toys because he wasn't cooperating for my Dad. Now I had to track her down with his entire Lego Cargo Collection!

I picked Joey up and once he saw me, he was fine. What my Dad didn't realize was that if the clinic saw Joey out on the deck by himself and couldn't see my Dad sitting in his car, they could have called CPS and had Joey taken away.

My Dad doesn't get Joey's PDD-NOS diagnosis. He doesn't believe in it. He thinks it's all my fault because I didn't discipline Joey enough when he was 2 and he tells me this everytime Joey is in the middle of a meltdown.

And they wonder why there is a disconnect between me and them.

Daddy's Leaving

My ex-husband, who left before Joey's 2nd birthday, called me on a Friday afternoon 2 weeks ago to tell me that he's leaving for 5 months. No, he's not serving in Iraq. He's following his baseball dream...again.

Ben was in baseball when I met him and he travelled for one season while we were married. He got screwed in his contract and left baseball but tells everyone, including himself, that he left it for his family.

The day he told me he didn't want to be a father or husband anymore was the same day the Mariners called him for a job in Wisconsin. He never took that job and I have a feeling it was because his parents told him he may lose all rights to his son.

Now the Mariners have come knocking again and he can't get packing fast enough. He wanted me to help him make the decision. Basically, he just wanted my approval. I knew he was going anyway so I just told him to "do what you want."

He made his decision the next day and is leaving after Spring Training at the beginning of April. I sometimes think that he is leaving because of Joey's diagnosis; because it's too hard to deal with, but then I remember that he said "what's it called again? PFD-SOS? He just has a hard time with transitions." Yes that's true that he does but that's not the only thing.

Ben has always been distant when it comes to caring for Joey. He doesn't take him for his well check appointments, teeth cleanings or even a haircut! He has not been involved for 1 minute for any of the appointments at the Melmed Center for his diagnosis, the meetings and trainings that I go to and Joey's behavioral therapy. He does, however, show up at Joey's annual IEP meeting, which I believe is only because he feels obligated because we use his address so Joey can be in that district which is closer to both our jobs.

One of Joey's therapists at SARRC recommended that I make a book about Daddy leaving because kids like him learn to anticipate events better with social stories and calendars. I told Ben about it and he doesn't seem to care so the burden will fall on me, which is ok, because the burden to heal Joey while his father is gone will fall on me as well.

Ben gives some Dads a bad name.

Sunday, February 1, 2009

More potty success!

Joey has been doing great with peeing potty! Of course, this comes right after I bought 2 cases of diapers at Costco! Ever since last week, he has been consistently peeing in the toilet, even in public places and he even sat on the toilet in an attempt to poop. That didn't last long, however, because he was scared of falling in. This is a major success for us because he is over 4 and held onto diapers for the longest time. However, he did pee at daycare in their potties, which I thought maybe was because they were low to the ground.

Joey has been heavily rewarded for this and I hope that there is no turning back. This is a major milestone for him!