Can I get an Amen?

I think a blog update is in order, maybe change the font or photo. Who knows? I guess I should update it since we are now going through a curious case of CAPD and Autism Spectrum Disorder. Sprinkle it with rainbow sprinkles and it's a party, huh?

I have this friend named Holly. She's the most remarkable mother, wife, and friend. I can honestly say there was some higher power that aligned everything just right to put her in my life. She has been supportive and loving and always gives me one heck of a laugh through our process with Em. She recently moved to Virginia (sad face) and has an amazing community for her special needs children. One of her doctors wrote this and I had to share it. "Here's the main problem with the proposed re-definition of autism in DSM-V: autism shouldn't even be in DSM-V. This is the diagnostic manual used by psychiatrists to define psychiatric disorders. Autism is not a psychiatric disorder. It is a systemic disorder that affects the brain as well as other organ systems including the gastrointestinal system and the immune system. Don't take my word for it. Ask Dr. Martha Herbert, pediatric neurologist at Harvard and Mass General. Defining autism according to criteria established by psychiatrists is nothing more than a historical relic. Psychiatrists are infrequently involved in the evaluation and treatment of individuals with autism, unless of course that individual has a co-existing psychiatric disorder. Much more often, the evaluation and treatment of individuals with autism is managed by neurologists, developmental pediatricians, and yes, primary care physicians. We should be the ones who establish the diagnostic criteria, not the American Psychiatric Association."

No other words needed...other than AMEN!!

Knock Knock..anyone home?

I haven't drown yet. Some days it feels like I have, some days a friend throws a life vest, and some days I feel like I'm walking on water. Yep, it's a roller coaster ride over here!

I'm almost afraid to admit how long it has been since I have posted on here. But then today, a new friend mentioned she read my blog. How embarassing that I haven't posted since the middle of last year. Hey, at least there is a reader though right?

Our journey began with Central Auditory Processing Disorder. It was a journey we started with no map or snacks. It was one heck of a trip. A fork was in the road and Emmie was diagnosied on the autism spectrum last year. Now our bumpy journey is like a jerky train ride.

I have so much to say about the autism spectrum, about our daughter and her sensory issues, and about our life in general. For now, I have to go get her out of the kitchen floor where she is currently standing on her head singing.

My life in huh is now my life of everyday surprises.

Subtitles

As many of you know, we are on a never ending waiting list for a Neuro Psych eval. I say never ending because each time I call Sutter to follow up on where we are on the waiting list, we seem to be pushed back a few months. Now, they tell us it'll be September. Nice huh?

Enter the special needs playgroup~a group of moms with children with various needs that come together during the week so the kids can have some social interaction time and the moms can talk to someone other than Elmo. In Elmo's defense, he is obviously a great talker but sometimes there's only so much you can take if you are over the age of 5! Anyway, one of the moms recommended another doctor who not only would do the Neuro Psych eval she would also file all the paperwork with our insurance company. I wouldn't have to go see the moron pediatrician for a referral! SCORE! I called her and it seems she can see Emmie in JULY!!! The doctor sent me the intake forms and it took me nearly three hours to complete! But, the "Book of Emmie" is now in the mail to her and we are all ready for a July eval. I seriously can not tell you how excited we are!

Lately, Emmie has been having some real off days. A few days ago we went to the library to pick out some summer reading books and the kids picked up movies. Emmie loves watching movies! She came home and watched her movie in her room. Later that night at bedtime, she was watching the same movie, this time with subtitles. I thought maybe she turned them on and didn't know how to turn them off. So, I asked her. Nope, she said she couldn't hear what the movie was saying if they mumbled or moved a lot. I asked if she could read what the words said and of course, not really. Now, anytime she watches a movie she watches with subtitles. This is a new development and although she has had several normal hearing screenings, we will be making her an appointment for another one just to be sure. I'm hopeful this Neuro Psych eval will shed some light on what in the world is going on!!!

Anyway, we are going on vacation soon! YAY! New post on traveling soon :)

A day in the life..

As much as I say I'll blog regularly, it just doesn't happen. I have really good intentions, but life somehow, always gets in the way.

Emmie had her first sleep over, well first one without her big sister there, over the weekend. I can not tell you how excited she was. I mean, the sleep over was on Saturday and she was packed on Tuesday. I, of course, had to re-pack her because I think she thought she was going for a year! I took her to her friends house around 5 pm and saw her around noon the next day. Her friend had a sporting event and I came along to cheer her on. After, we had lunch then swam at her house for a few hours. Although Emmie got 8 hours of sleep at the sleepover, she slept an entire 15 hours last night. Any sort of change or over stimulation like going to a sleepover completely and totally exhausts her. She had a blast though and I know we'll be having many more sleepovers in the future, but it breaks my heart to see her so tired over the situation. There is nothing that could have been done...you know, it's just part of having a special need.

Which brings me to how our night ended. Emmie came down from her bath sporting white and blue capri pants and a pink and white striped shirt. She always chooses comfort over fashion and could simply care less if she matched. I rolled my oldest daughter's hair with her dad's dress socks. Yes, you read that right! Thank you YouTube! LOL And had one sock left over. Emmie decided it MUST go with her outfit and put on the one sock. I wanted to take her picture, however asking her to take her picture lead to a complete meltdown. Another day in the life I suppose....

Hello!

I could write a novel over everything that has happened over the last few months. But, if I don't have time to really update here I certainly don't have time to write a novel! One day..perhaps.

Emmie has had a rough school year and sadly we have NO idea what we are going to do next year. Education in California is just plain awful. She's struggling in so many areas, but those that make the laws seem to think shoving more kids in a classroom and cutting the school year by 30 days is the answer.

We have also had two trips to the Neurologist and an EEG since I last updated. We think she's having absence seizures, although the EEG was normal. It actually wasn't a clear picture of her day because the process was so exhausting for her that she slept the next 24 hours while she was wearing it! We are currently waiting 8 months for a NeuroPsych evaluation before an MRI can be ordered. I have spent the last few months thinking over and over that she was misdiagnosed in the first place. But thanks to the awful Pediatrician we have, no one will listen.

Finally, any change in her schedule now makes her ill. For example, this morning I had to take her older sister to school at 5:45 am for a Band event. I woke her and her brother up because my husband is on night shift. We came home and the kids went back to bed. But because this was a change in her routine, she has been sleeping all day. Right now, she's curled up under a blanket with her koala pillow pet sound asleep. She woke up long enough to run to the store to purchase a birthday gift. But, she spent the time huddled inside the shopping cart.

I'm not sure what the summer is going to bring us. But, I'm pushing for the lazy Pediatrician to do more. After all, the only thing I need her to do is write a referral..she doesn't even have to talk to my child. Oh yeah, she doesn't anyway!

I didn't forget you..

So, you are thinking, "wow, she totally forgot about this little blog!" I promise I didn't. I will update this weekend with all the adventures of life with Emmie. Trust me folks...it's never a boring trip!

No words

I have sat here for over an hour trying to figure out the "nice" way to begin this post. I can't find it in me to say anything positive at this time. We have had some major regression, frustration, and little understanding. Major.