An Invitation

Today new numbers were released. Autism is now up 30% to 1 in 68. These numbers are incredibly high. In 2012 the numbers were 1 in 88. The rate has continued to increase over time. My biggest concern is that we do not have enough resources for all these children being diagnosed. And what about when the kids become adults? Who is going to take care of those who needs constant care? What are these kids going to do for work? Are colleges going to be equipped for them? These are questions that WE have to bring attention to. I am just one mom, but I know that I can make a difference. If everyone would come together, and raise their voice, call attention to this issue, then we could all make a much bigger difference.

I know people thing autism awareness is silly because they think everyone knows about autism. They may know that autism exist, but they may not know how many kids it affects, how it affects them, or even that there's a significant lack of resources. When Bug was diagnosed, I knew what autism was, but I had no clue how scarce the resources were until I was thrown into that situation. Suddenly, I was facing an uncertain future for my daughter, and I did not know what to do. It wasn't until I began reaching out to people who knew that I found resources.

Which leads me to another pressing issue. We wasted months after we got her diagnosis. Precious months that we will never get back. Why? Because I had no clue what to do after her diagnosis. I didn't know where to go for treatment. I didn't know that occupational therapy would be beneficial for. I was completely clueless. We need to make an effort to fill the gap between diagnosis and treatment. That gap is time that we can never get back, time she could have been getting treatment.

Don't even get me started on insurance coverage. So many ASD families are paying for treatment completely out of pocket because it is not required to be covered. So many families mortgage their homes, take up second jobs, and sell things just to give their child the best chance that they possibly can.

So I am asking everyone to Light It Up Blue next month. Out out your Christmas Lights, change your porch light, change your profile picture on facebook, do whatever it takes. These kids (and adults) need us to all come together to raise awareness. If we don't do it, who will? I have only listed a few reasons why this is so important. I could go on. Please take up my invitation. I will be posting pictures next month of my home and any others who email me pictures, and take up our invitation. If you don't feel comfortable posting a photo of your home how about a photo of your family in blue? Your dog in blue? Be creative, and help me raise awareness.

                                                   And who can say no to these cute faces?

Day 3 and 4

I am still staying pretty full. The kids seem to be as well. Today (Day 4) Liz didn't eat a ton. I am wondering if she is coming down with something. Even some of her favorite snacks she skimped on. Poor girl. Presley seems to be doing better about eating, and this morning she even insisted on eating her breakfast at the "big table" instead of the kids' table. I am really loving sitting down with the girls for all their meals. I have made a point to put my technology away, and just talk with them. So far I am pretty pleased with the results of the SOS. Liz seems to be branching out and trying new things.

SOS Day 2

Yesterday was a little harder for me, mainly because I had a headache. Liz did really well though. It has actually been harder for our youngest. One thing I have noticed is that we have all pretty much stopped grazing. I've been a grazer my entire life, unable to ever really feel full. Sitting down for assigned snack times has done wonders for all of us. One thing I will do for next week is get a menu from the school as some of my things have overlapped with theirs. I should have done that to begin with.

SOS Day 1

Today actually went fairly well. Liz ate pretty good. The hardest part for her was to sit at the table. She wanted to sit at her kids' table. I made sure we all sat down together as a family for every snack or meal. At lunch time, she wanted to go and play instead of eating. I told her she did not have to eat, but she did have to sit down with the family. She ended up eating something even if it was not as much as I would have liked. Today went SO smoothly. I was really glad that I took the time to divide up out snacks. It was really easy to just grab what I needed out of the fridge already in its ziploc bag. Here's to tomorrow going even better!

Rules Of the Game

Next week we begin the SOS Diet. I felt a bit overwhelmed. Normally, my kids tend to snack on the same things. This is going to be very different for my family. These are main rules.

Rule #1 and the most important rule is that nothing can be served the same way in a 48 hour period. Something about the taste, texture, shape, etc. must be changed.
Rule #2 is that Liz needs to eat every meal at the table even her snacks.
Rule #3 is that our meals need to stay between 15-20 minutes.
Rule #4 she needs to be given 3 options at every meal (even snack time).

As soon as we got home from grocery shopping I divided up the snacks. I planned for 2 snacks a day. Liz has school in the A.M. so I think 2 is more than enough when you consider that she is getting 3 things with each snack. I divided each one into ziploc bags (unless something needs to be made, in that case I put in a slip of paper). Each zip loc bag was labeled with Day and Snack #. I told my bigs that they can only have the food in the ziplocs when mommy says it is time. I actually like this divinding of the snacks, and I think I will continue to do it. I bought a few extra snacks for my youngest child to have in the mornings.

Some things I got for snacks:
Apples (green and red)
PB&J sandwiches (different bread, different jam, different texture PB)
Cheese (string cheese, cubed cheese)
Animal Crackers
Goldfish
Granola Bars (different flavors)
Gogurt (different flavors)
Nutrigrain Bars (different flavors)
Raisins

I basically planned 2 menus and repeated them every 48 hours. This made the planning SO much easier for snacks. The actual meals were easy, the snack were the hard part.

As my husband works nights, Lunch is our family meal most days (even though Liz has lunch at school). Liz is starved by the time she gets of the bus so it works out anyway. Dinners are our lighter "lunch" type meal.

So my plan is (Liz eats Breakfast at school):
Lunch when Liz gets off the bus
Nap Time
Snack
Dinner
Snack

Hopefully this works out. The weekend will be a little more tricky. I might have to add in a third snack for those days. We will see. Monday I will begin a daily log on how things are going.

SOS!

Monday we will start the SOS Approach to Feeding. I am slightly nervous about this. It's a lot to take in, but I think we are ready. The hope is that we will be able to expand Liz's diet, and help her establish some better eating habits. After reading up on it, I think all kids could benefit, not just kids with sensory issues. It focuses a lot on getting them to branch out and try new things. It also helps them establish some good habits.

I loved the page with myths. I love, love, love that is stated kids need 5-6 meals a day! I don't know how many times I have heard people say kids shouldn't snack. I snack, so I would assume my kids would need to as well. Especially with the amount of energy they use. I also love that it addressed that some kids WILL starve themselves. I always hear that Liz won't, but the thing is, she will.

This should be an interesting experiment for our family. I plan to update regularly on our progress over the next 2 weeks. I am hoping that we see some major results. I am so glad that we have a therapist who listens to our concerns and helps us find solutions. She has worked some serious miracles in our home.

Moving Forward

Liz has been excelling in her private OT. She has now met 2 out of 3 of her major goals. Today her OT told me that she doesn't for see seeing Liz after July. Just a few months ago if I had heard this I would have ran home in tears. I would have been terrified, but I do feel like Liz is having some major break throughs lately. I also know that of she regresses we can always go back. It is still scary to think about, but not nearly as scary as I would have found it 3-4 months ago.
This is a huge step for Liz. When I compare her behavior and struggles to where we were a year ago, I can see a major difference. OT brought out a different side of Liz. She became for social and suddenly less afraid to show who she is to others. This is really a huge mile stone for her.
She is still struggling in speech. While she is more verbal,  her auditory processing disorder will be her greatest obstacle to overcome. I see her struggle with it on a regular basis, but I still see progress. She is talking to us non stop now. It's like she is trying to make up for all those years when she could barely tell us what she wanted or needed. I don't think she ever stops.
It feels so good to be moving forward and seeing progress. Way to go Liz! I am so thankful for the fabulous therapists that we have been able to work with. They have all taken the time to get to know Liz and spend time with her. It has been worth every penny to hire someone private.