Advocacy Regrets

I have attended countless meetings; I have been very active in the local autism and disability community. Services and system navigation became my area of interest and I became very knowledgeable. I know how to navigate and because I was so active I knew when new funding was going to come available. And I shared the information with anyone who asked. The most interesting thing I found about my state is that the funding that comes from general revenue goes to families regardless of family income.

I have found that people assume that since I have the ability to learn and recite information people assume I do not struggle in any area and that I have outgrown my autism. This is not the case and it actually has made my journey to get services harder.

Yes, I am able to recite all the information and know the dates and what is happening, I lack the ability to navigate the system for myself. I knew when three rounds of funding were coming. That is three times I could have come off the waiting list but I was unable to use the knowledge to help myself.

When it is added up I have helped several families get well over $20,000 in funding in the first year. This number will grow every year because some of the families I helped get funding for life. It will grow between $16,000 and $36,000 a year. The former amount is only if you count funding that comes from the state general revenue the latter if you count federally matched funds in a Medicaid waiver. That is a lot of money.

I counted Cowboys annual $3,210 per year (the amount per person from state general revenue). Cowboy is very high functioning and no longer needs the intense ABA therapy. I use his funding for speech therapy and physical therapy. He gets speech therapy to help him with his Tongue thrust, physical therapy to help with his leg pain. Next year I will use part of that money to help pay for his Irlen’s lenses.

I also have autism. I was diagnosed at the age of 12. I was considered severe. The only down fall is that no one bothered to tell my parents I had autism, they knew there was something but they did not know what. To date I have received $1,400 in funding. I used $750 to pay someone to help me get and organize my medical records. I needed the records but I could not get them. It was a huge headache and I am thankful that I had the help to get it done; I could not have done it alone. The remaining $650 went to help pay for my Irlen lenses (I am still working on together an additional $207 to finish paying for the lenses.) I spent a solid year fighting for the $650. I was close to a nervous breakdown more then once during the fight. During the time I knew I needed help to get the funding so I called the people I helped get funding, people I considered friends. 

One of the moms said “well, my son should get funding because he is a child, your family should help you the money should not go to adults.”

Read that again. This was pretty much the standard response I received when I reached out for help. I did not ask everyone I helped for help. I only asked those I considered to be my friends. Needless to say, I was very upset. I still am upset about it.

To provide some perspective, the family I quoted is not low income, nor is the child severely affected by autism. The family is not on the verge of losing their home in the housing crisis, not by a long shot. In fact my parents make half of what they make. Half. And my parents are not in anyway impoverished, in fact there income is well over the median household income for our area. If you are taking notes the family that is receiving $3,210 per year for their healthy high functioning child with autism makes more the double the median household income. Personally, if you added up my annual incomes from every year I ever worked (age 15 through 21) it was still below the annual median income the year I stopped working.

The last person I helped, I helped as I was working towards getting funding. As I was being told there was no money I helped a family get services for their child. While I was being told they had no money they got services. Not the $3210 a year like everyone else. Nope, they are getting the highest amount I have helped anyone get to date. This was not a friend but someone I had met on a couple of occasions through a local homeschool group. I do not regret helping this person. I know they were desperate and the alternatives where not what I would wish on anyone else. And she did say thank you.

Past Adventures: Santa Fe Trail

We did not follow the Santa Fe Trail to the T. Cowboy wanted to know how space ships took off so we went to the Cosmosphere in Hutchinson. We have followed the trail in Missouri and Eastern KS on a previous occasion and felt that driving it again would be boring when we could see something new and exciting. Great grandma lives only a couple of hours so we detoured deeper into the mountains for a couple of days. And of course we took a different way home.

Day 1
Tallgrass Prairie National Preserve
2480 Ks Highway 177, Strong City, KS 66869-9829

Day 2
Morning
Kansas Underground Salt Museum
3504 East Avenue G, Hutchinson, KS 67504-1864

Afternoon
The Kansas Cosmosphere and Space Center
1100 North Plum Hutchinson, KS 67501-1499

Evening
Quivira National Wildlife Refuge

Day 3
Morning
Coronado Quivira Museum
105 W Lyon St, Lyons, KS 67554

Barton County Historical Society Museum and Village
85 S. Hwy. 281 Great Bend, KS 67530-1091

Lunch

Afternoon
Ellinwood's Underground Tunnels
N.W. corner of Main & Santa Fe, U.S. 56 at the stoplight

Brit Spaugh Zoo
2200 Main St Great Bend, KS 67530

Pawnee Rock
Pawnee Rock State Historic Site
 
 
Day 4
Morning
Santa Fe Trail Center
1349 K156 Hwy
Larned, KS 67550

Fort Larned National Historic Site

Lunch

Afternoon
Edwards County Historical Society Museum
1027 US Highway 56, Kinsley, KS‎

Spearville Wind Farm
Spearville, Kansas

Boot Hill Museum and Front Street
500 W Wyatt Earp Blvd Dodge City, KS 67801

   
Day 5
Old Bent Fort
35110 Highway 194 E.
La Junta, CO 81050
 
 
Day 6
Buckskin Joe Frontier Town and Railway
 
 
Day 7
Dinosaur Depot
 
 
Day 8
Afternoon
Capulin Volcano National Monument
46 Volcano Rd, Raton, NM 88414
 
Evening/overnight
Cimarron Canyon State Park
 
 
Day 9
Morning
Philmont Museum and Seton Memorial Library
 
Early Lunch
 
Midday

Fort Union National Monument

Afternoon
Pecos National Historical Park

Evening
Santa Fe!!
 
 
Day 10
 
Afternoon
Cadillac Ranch
 
Black Hawk Tour
 
Evening/overnight
Palo Duro Canyon State Park
 
 
Day 11
 
Afternoon
Cowboy Museum
 
Evening
McDonald's Glass House Restaurant
 
 
Day 12
Spent at a friends house. We would have been home one day 11 but Cowboy fell and hit his head and I had to watch him over night and that is not possible while driving home.

Harvest 2010

As I mentioned in Food Solutions this year we tried our hand at gardening. It was a lot of fun mixed in with hard work and a lot of learning. A lot of our plants did not yield the results we were expecting because we really had no clue what we were doing. We got lucky on carrots and had an abundant harvest but we did not get to save any because they were eaten before then could be preserved in any way.

Potatoes were another story. Out of twenty-eight plants we managed to get six potatoes. Only two were bigger then a brussel sprout.

Our harvest of knowledge:

~Carrots planted in cinder blocks do really well.  

~Potatoes plants are much loved by bugs.

~Do not underestimate the size of zucchini and cucumber plants.

~A large tub is not large enough to grow three pumpkin plants.

~Lettuce is actually really good.

~Everybody loves peas but the rabbits get there first unless they are protected.

~Watermelons will take over but taste so good.

~Green cantaloupe looks like watermelon.

~Cucumbers are very hearty.

~Kohlrabi will prosper no matter how incompetent the person tending the plant.

~Radishes will reseed themselves and will produce two crops a year with out any help.

~Sometimes onion just doesn't grow.

~Tomatoes started late do not have as good a yield.

~Green worms are hard to get rid of.

~The adventure is in the process 

Happy Thanksgiving

While you are enjoying your feast I hope that your knowledge and understanding of the day is accurate and not based on the commonly believed tale that is presented as fact but that is anything but.

If you are wondering what on earth I am talking about visit and watch:

http://www.pbs.org/wgbh/amex/weshallremain/the_films/episode_1_about

We will be watching it today, will you?

The Worksheet Trap

Worksheets are a fairly new invention. They provide a quick way to determine watch a large number of students have gained from a subject. They do not teach anything and they do not provide an accurate gauge of what a student has really learned.

A couple of months ago Cowboy and I stopped at Wilson’s Creek National Battlefield We spent several hours exploring the park and talking with the volunteers and rangers and looking at exhibits. Truth be told, Cowboy outlasted me in the Civil War Museum. Standard practice is to take information about Wilson’s Creek and put together a worksheet that will serve as proof that he understands what he was exposed to and expected to learn.

The biggest problem with this is that the worksheet will determine only what I (or the person creating the worksheet) feel is important and what an adult gains from the experience and not what he, as a child, gains from the experience.

Here is what would be expected from a standard worksheet:

-Date

-Location

-Names of important people

-Significance of the battle

-5-10 vocabulary words

For a historical record these things are important and yes I believe that this information should be maintained. However for a child this information has little meaning and children who have to force themselves to learn bland facts lose out on the joy of learning about a significant event in their cultural history. If a child knows there will be a worksheet related to the visit they will focus on memorizing things they think will be on the worksheet so that they can receive a good grade and pass rather then on the whole experience. The child then has to focus on what they are scheduled to learn next and generally the information is not retained.

If the child wants to learn more about the subject then they have do so on their own. For younger children this presents a problem because they may not have learned how to navigate the library or the interlibrary loan program to find books on the subject. For some children reading is so painful and difficult that they are unable to read for pleasure after a struggling through what is required. I hesitate to even mention the internet due to all the inaccurate information that is available online on so many subjects. Navigating through websites that do not provide accurate information is a difficult skill that people of all ages struggle with.

Now let’s look at what Cowboy gained from the experience of visiting Wilson’s Creek. He did complete the Junior Ranger program but I did not place any expectations on him and what he should learn from the trip. I will break it down by what we talked about and how long after the trip it took place.

-Dinner that evening we talked about the family who lived near by and what they did during the battle.

-The next day he Cowboy called grandma and told her about visiting Wilson’s Creek and he explained what happened when and who was there. By this time he had forgotten the general’s name (names are very hard for him and he struggles with the names of children he has known for years).

-A week after returning home from our trip Cowboy recreated the battlefield using moon dough. He used an eraser to mark where the Ray house was located and used the back of a pen to make marks where the soldiers were.

-2 weeks after he decides that he wants to reenact the battle with his friends for his birthday. He planned out which friend will play what part and decided on a suitable location.

-6 weeks later I take him to Hobby Lobby to buy supplies to create a lasting model of the battle field. Cowboy spent an hour a day for 4 days working on the model.

-7 weeks later cowboy decided he wanted to write (or in his case, dictate) a story that is “based on the civil war but is made up”, in other words, his first piece of historical fiction.

-On going: Cowboy still talks about the Battle of Wilson’s Creek and wants to visit more battlefields and learn more about American History.

Which do you want for your child?  

Home Made Veggie Bouillon

I love to create edible art. That is a fancy way of saying I hardly ever use a recipe and some days the dogs get lucky and we go out to eat. I love to take different foods and put them together and out comes dinner. My goal is to get to the point where everything we eat starts as whole ingredients and nothing is processed outside of our house. I am happy to say that we are doing really well on it. Except for bouillon and I use a ton of it. I have set out to make my own homemade veggie bouillon. I use it in so often that when I cook a batch in my largest pot I have to make more every couple of months.

                                                                                         

It is incredibly simple to make. Get your two largest stock pots out. Fill half way with water. Put it on the stove and have the stove on medium. Add veggies. It goes without saying that you should peel and wash the veggies before adding to the pot. Bring to a boil then reduce heat and simmer. Cook until veggies are tender, adding water as needed. When the veggies are tender put in blender and puree then return to pot and continue simmering. What you are doing now is condensing the stock. By now everything should fit into one pot. Continue to simmer. Transfer to a lined dehydrator tray and transfer to the dehydrator. Dehydrate then put the mix back into the food processor and blend until you have small uniform sized granules. I took the extra step of sifting out the powder from the granules to have two options when cooking. Don’t forget to taste as you are cooking!

There is no right or wring way of doing this. All you are really doing is making a vegetable soup. To give you some ideas here are some ingredients I have used in the past.

Onion

Garlic

Almonds

Potatoes

Carrots

Mushrooms

Winter squash (various varieties)

Summer squash (various varieties)

Salt

Parsley

Spinach

Celery

Cabbage

Broccoli

Eggplant

Winter squash seeds (roasted)

Various seasoning

Eggs (leave out if you are vegan)

I have tried taking raw veggies and dehydrating them and them grinding them up and using those granules as a soup base. I am sad to say it did not work out like I had hoped. After dehydration the veggies were too hard to go through the food processors and it killed my first small food processor. The little bit I did get through the processor too a long time to cook up when added to boiling water. Instead of helping speed up cooking time, the meal took longer. 

Charity

Oh the fun of giving. I love to give, I really do. I enjoy giving something to someone on a personal level. I do not believe giving should be done with disgust or because it is required. I do not believe giving should be impersonal. As a result of this I do not give cash to any organization.

While I do not make monetary donations we are generous with our time. We love to volunteer and I personally feel that there is more to be gained by donating time and energy then to make a cash donation.

We aim to donate four hours of our time each month. Those four hours make a huge difference in the lives of many people directly and indirectly. Here are four things we can do in four hours.

We can provide 200 hungry people with a hot meal.

We can pack hundred of back packs with food to send home with children so that they have food to eat over the weekend.

We can prepare boxes of food for 200 families at the local food pantry and help organize and rotate the food.

We can pick up trash at a park, nature trail or along the river.

I am sure that those who come and wait in a long line to receive a hot meal appreciate the meal and the smile that goes with it, for many of the homeless who come through it may be their only hot meal and the only smile they received that week.

The children who take home a backpack know that they will not go hungry. They may be not full but at the very least they will not go hungry.

Families who need a bit more to make it threw the week on their budget can do so without trying to figure out what bill they will no pay so that they can buy enough food.

It may not be direct but those who go on nature hikes or live down stream on the river appreciate looking at less trash. I’m sure mother nature appreciates it as well.

The Monster Bushes

Have you ever bought a few bushes for your yard only to find that the plant information was misleading? We did. I have decided that when they said the bush would not exceed 3 feet in height that they meant it would not grow more then 3 feet a month. That would better explain the monster bushes that we planted under our front living room window. Many visitors to our house June through October do not even know we have a front window.  Sometime I forget, and I live here!

So every Autumn I head out front with newly sharpened sheers and attack the monster bushes, a job that takes several hours of the course of a couple of days. The bushes have to be cut. The branches have to be cut up and put in the bags to be collected on Monday afternoon.

As with all things it would go faster if I did it on my own and sent Cowboy off to play elsewhere or put him in front of the TV. I choose not to do this because I believe that he is always learning and I want him to learn that fun or not, some things have to be done. I do not want him to learn that he can sit ideally by and not part take in life. I want him to understand that maintaining a home is something that has to be done and is not something that magically gets done. He learns this by watching and helping me. If he is not helping with the physical labor aspect of the job he is helping by keeping me company and talking to me.

Another very important lesson that he is learning is that work can be a reward. After we have mutilated cut down the bushes we are left with several long straight sticks and a lot of thin flexible branches. What does one do with all of it? Maybe it could be a fort? Hmm, just maybe. 

I took the long thick branches and stood them together and intertwined the ends and wrapped a thin flexible branch around the top. I left the rest to Cowboy. He took the rest of the discarded branches and piled them up around the edges to make the walls. He wanted more room on the inside so I climbed inside and pushed the walls out a bit. When it was all done there was enough room for both of us to sit inside and was about 4 and a half feet deep.

For the record it stood through a thunder storm, windy days and four little boys running around, climbing in, out and on it. After about a week and a half, when the leaves started to wilt and the newness wore off we took it down and bagged it up.

Acorn Squash Autumn Cake

Yesterday we went to an early Halloween party with a few friends before trick or treating. The children had a blast playing in their costumes with their friends. Every family brought a wholesome treat to share with everyone when it came time to go trick-or-treating. One family has two people with a severe dairy and soy allergy so I decided to try making cupcakes without dairy or a dairy alternative. I am not a cake fan and I normally prefer not to go through the trouble of cooking something I will only eat out of guilt of wasting food.

And wow! It was wonderful. I did not using any icing and it tasted really good without any. I am working on exercising a lot of self control to not go eat one or two for breakfast.

Acorn Squash Autumn Cake

Ingredients:
2 cups olive oil
3 cups sugar
4 eggs
3 1/3 cups flour
2 teaspoons baking soda
1/2 teaspoon baking powder
1 1/2 teaspoons salt
1 teaspoon cinnamon
1 teaspoon nutmeg
2 teaspoons ginger
1/2 teaspoon cloves
2/3 cup water
2 cups puree cooked acorn squash

Directions
1. Cut acorn squash in half, remove seed and bake in the oven at 350 for an hour until squash is very tender. Remove from oven and allow it to cool.

2. Scrape out the tender flesh and put in a food processor and pulse for 30 seconds or until well blended.
3. Combine all ingredients in a bowl mixing alternately with water and squash.
4. Mix well.
5. Pour into a well greased cake pan or
makes a lot of cupcakes.
6. Bake at 350 degrees for until toothpick comes out clean.