Kaden's Mommy's blog

We had a great day today! Tiday was Arizona's Walk Now for Autism Speaks. It was nice to see how many people support our cause. Team Kaden contributed over $700 to Autism Speaks :]

Since this blog won't allow me to post more than one picture, I could only post one. This is Lorenzo, Kaden, and me after we crossed the finish line!

A BIG THANK YOU to all of our friends and family who walked with us or donated on bealf of Team Kaden. Thank you!!!!

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ieven...

I am so sorry for the lack of updates! We have been extremely busy lately. Kaden, Lorenzo, and I attended a 5 week program called Jump Start offered by SARRC (Southwest Autism Researh and Resource Center). It is a program for families with children who are newly diagnosed with autism spectrum disorders. They worked with Kaden so much and had parent sessions and taught us all about autism and treatment. They also did parent training sessions, in which a clinician worked with Lorenzo and I as we did ABA (Advanced Behavioral Analysis) therapy with him. Kaden made so much progress thanks to Jump Start and SARRC and I am forever grateful. At diagnosis he had 23 words and now I would say he has close to 50. I also met other moms going through the same things and it was really good to talk to them about their experiences and trade tips on how to deal.

I am so beyond frustrated with where we are right now. Since Kaden turns 3 on Saturday, he can't receive services until he offically falls under the DDD umbrella and is not under the AZ Early Intervention one. AZEIP only serves kids under 3, while DDD claims that they can't help till he turns 3. Neither one of them want to give us services for at least a month. So here I am with my autistic child who was unlucky enough to be diagnosed at an in-between time and not receiving services. I am just so incredibly sick of the games DDD plays. Not only that, but to get Kaden involved in Jump Start at SARRC, they won't even sign him up until I give them a $125 deposit. OH OK! LET ME PULL THAT OUT OF MY ASS! DDD told me that "they know it is hard getting services started up, but by December, we should be in a routine with services". DECEMBER?!@?$!$#

I had a truly touching experience today. For those of you who don't know, I work at a pediatric hematology/oncology clinic. I work at the front desk and check patients in, take phone calls, etc. Anyway, I get to know a lot of our families well because they come in so often. I admire the strength these families have and the unyielding amount of hope they continue to hold on to. It is contagious. 

There was a little boy who came in a couple of weeks ago, a hematology patient. His mom had mentioned something to me about getting some paperwork sent to the Department of Developmental Disabilities (DDD) for his special needs preschool. I told her that I understood how important it was to get paperwork to them quickly because they are SO SLOW at coordinating everything. She laughed because she knew exactly what I was talking about.

I find myself mindlessly googling "autism" at random times throughout the day.

I've seen the same google results page at least 300 times. I don't know why I keep doing this. Kaden is still the same little boy who I love and cherish endlessly. My thoughts are consumed with questions about his future. I can't stand this factor of the unknown. I can't stand hearing people talk about how bright and gifted and wonderful their children are. I can't focus on anything but this anymore- it is like I'm in a state of obsessive oblivion.

Autism is for the rest of his life- the rest of our lives. The magnitude of forever just doesn't sit well with me. 

I need some better coping skills, although typing it out on a blog is better than holding it in. Well, in my eyes anyway. I can only talk about it in a generic sense without getting too in-depth because then I just cry and I hate the feeling of hopelessness that overcomes me. 

I suppose healing will take time.

Kaden was sick this weekend. I had to take him to urgent care on Saturday because he had a sinus infection and possibly strep throat. How do you like that? The kid doesn't have any tonsils, yet he still got strep. Ha. I found out that it is more common than I thought.

Anyway, on to the important story of the weekend. On Sunday Kaden and I went with my parents to visit my Grandpa and Lita's house. Kaden is obsessed with a pink Dora watering can that my Lita has. (No, I don't care if it isn't "gender appropriate"). He runs to its spot underneath one of her plants everytime we go there. I can't believe he remembers that. We were just hanging out when my Tio Martin and cousin Matthew came over. They came with a really cute, homemade gift basket and set it on the table. I assumed it was for my Grandpa since he was just released from the hospital. After Tio Martin and Matthew left, my Lita went to give the basket to my Grandpa to open....except it wasn't for him. It was addressed "To Liz and Kaden".

Today I met with Rachel, Kaden's AZEIP coordinator. AZEIP stands for Arizona Early Intervention Program. She had to ask me a bunch of questions like "Does Kaden dress himself?", "Does Kaden know what the names are to parts of his body?". Question after question and the same answer. No. No. No. 

Rachel told me that they will have to do an evaluation for their records, so we are going to have to go through all the tests again. Some of this feels useless. He's already done this- can't we just start the therapy already? Of course, I had to go through all of the financial paperwork with her and sign consent forms for all his hospital records and doctor notes. 

Kaden was diagnosed with Autism on June 14, 2012 at 2 years old. I can't say this diagnosis was a surprise, yet it was still excruciatingly heartbreaking. Kaden has had his fair share of medical problems in the past- including asthma, reflux, RSV/bronchiolitis twice, laryngomalacia, chronic aspiration and swallowing problems, surgery to remove his tonsils and adenoids, multiple scopes and barium swallows, and severe food aversion. When Kaden was 15 months old, Dr. Matsumoto, his pediatrician, had suggested to me and his father the possibility of him being autistic. He was evaluated at 18 months and we were told he was developmentally delayed and not autistic, but to come back in a year.