Friday, May 18, 2012

How I'm Feeling Now

Well it's been a few weeks since we got the ASD diagnosis. I'm learning bit by bit and really trying to get as educated as I can be. But honestly there is so much information out there and so much to do I am at a loss on what to do first. I am getting familiar with fancy acronyms such as ASD (Autism Spectrum Disorder), three weeks ago I wouldn't have been able to tell you that is something! 

What have we accomplished so far? Well we went to the ASD Parents Orientation through Kaiser last Friday. They provided a lot of information on the services that are in our area as well as services that they offer but no information specific to James. We have a appointment to meet with a Pediatric Psychologist on the 29th of this month to get some more specific guidance on what James is going to need. I am looking forward to that meeting so I can have a more definite "To Do" list. 

I have also been reading Ten Things Every Child with Autism Wishes You Knew and I am actually very impressed with it. I can actually read it with out trying to figure out a bunch of medical terms. A doctor I am not! I am actually of thinking of buying a few copies to give to my parents, sister and best friend. They are all around James a ton and I think with benefit greatly from the information. 

One of my major tasks is to get a few books to help Megan better understand her brother and how she can help him. We got a list at our orientation that I have yet to look at. I guess that will be a task for this weekend. 

Here are some of my concerns about parenting at the moment...  

Food-James is beyond picky and I feel like I have tossed in the towel on getting him to eat anything other than his fab five. Yogurt, cereal, cheese, crackers and Pediasure. Megan on the other hand has been on a non-diet diet for years. No seconds on starches, extra veggies and sweets occasionally. We are constantly saying no to seconds and no to extra snacks, I hate it and really we have not seen much difference in managing her weight. She has stayed on her growth curve no matter what we have done. 

Fits, Meltdowns and Tantrums-Is it possible for a little boy who fits under the ASD umbrella to have all three. They are all quite different from one another but Mike and I have been feeling more and more that we are avoiding all of them as much as possible. Obviously we want to avoid the full emotional meltdown. They are no fun for any of us and are a direct result of us missing the over stimulation cues James gives out. But sadly we have seen a increase in the tantrums and fits as we have worked on learning his meltdown cues. We need to find the middle road where we are not walking on egg shells and no giving into every request the little man has. 

Sleep-Our "good sleeper" has left us and is now a pain in the rear. We have a 20-40 minute struggle every night. James is ready for bed, grabs his blanket and gives kisses. He is all smiles when you put him in bed. But as soon as the door closes the screaming starts, his blanket and pillow get tossed out of his crib. We usually wait for 10 minutes before we go in and tuck him back in. THEN he goes to sleep. How did we create THIS bedtime routine? How do we kick the habit? 

So yeah, just a few of my thoughts on this mellow Friday night. Anyone have any thoughts or suggestions? 

Sorry no pictures this time...a little boy I know seems to think hiding the camera cord is a good time. 

Until next time...


Saturday, May 5, 2012

Not Quite Blindsided!

Well we have had one heck of a week...well year I guess! It has now been officially over a year since I wrote on this blog. What have I been doing? A little of everything. House stuff, kid stuff, you name it I have been doing it. 

Most recently our family was thrown a little curve little boy has Autism. I am still trying to fully digest that information. Is it a surprise? No

So how did this all come up? Well here is the long story. 

About November we started to notice that James was talking a little less than he had been, I figured he was more into his good ole caveman grunting than using biggie. 

Then the fits started...not to be confused with a tantrum...a fit (read meltdown) is different. The good ole terrible twos arrived but were different, he didn't want anything when he was in a meltdown. He was out of control, over stimulated and miserable. 

Around January I noticed that the 9-10 words James had been saying had been reduced to Hi, Hello and No. I still had not been addressed as Momma and his first word Spock was gone, odd I thought. Well he is a boy and will do things in his own timeline, not mine. 

Around the same time I noticed that my niece Rylee who is 10 months younger than James was communicating almost more than James was. You could ask her a question and she would respond with a nod yes or no, humm. I thought to myself that she was just really smart.

At James' 2 year check up in March he was not a happy camper, we are talking HUGE meltdown, clawing at the exam room door, kicking his doctor, kicking me (not cool), I had scratches down my neck and on my arms. I was shocked at how I couldn't get him to settle down, nothing was making him happy. I had all the fruit snacks, water, crackers and books to keep him happy, he could care less. I thought that his allergic reaction (another long story) a few months back had ruined the doctors office for him, bad memories and all. Over the screams I tried to answer the doctors question and get the appointment over ASAP. The Doctor asked if I had any concerns, ahhh yeah he isn't talking. I asked if we should check his hearing or something or if we should give him more time. The doc asked if I was concerned about Autism, my heart stopped, dramatic I know but I was beyond annoyed. NO I was not concerned about Autism he was just being stubborn about talking and he had a bad experience at his last trip to the office.He was fine other than that. 

Well flash forward a few months and I am less shocked. 

After tons of paperwork, tons of questions, several doctors and specialists that is the diagnosis we got on Thursday. While it was not a surprise I was surprised to realize I was really holding out for them to tell us we were just spoiling our little man and that we needed to work on that...well not so much. 

Seeing as it has been just a few days I really have very little information to offer our friends and family...or myself for that matter. James has not changed, he is still our sweet little man. 

What is next??? Well I have made about 5 calls getting set up for speech therapy, Autism support groups, regional resources and so on. We have a lot of work ahead of us, we need to get educated.

Finding the right way to tell our friends, extended family and acquaintances our news has been on my mind. I don't want to make this a huge issue, but for us it is huge.

So yeah...I'm going to start up this blog thing again...I imagine the content is going to change from it's original plan...join me as I learn about Autism.

My sweet little man.