Tuesday, November 29, 2016

Gory details or the Highlights? Do you really know what's going on in an autism home?

How do you explain life with autism?

Do you give all the gory details?

The trips to the ER....Embarrassing moments in public...Poop?

Most of us Autism Moms live our lives talking about the highlights.  It keeps us going.  Maybe that's what you've heard.....all the cute heart warming things our kids do.

Do people really get what goes on in our lives?

At some level, I would expect most people to have empathy.  Hearing the details of our lives can be uncomfortable, but I would hope for true listening and thoughtfulness.  Maybe even putting themselves in our shoes for a moment....and then realizing those moments make up a lifetime.

I'm not looking for sympathy.  I have a very real sense of how extremely blessed I am.  When Tristen was first diagnosed, I decided right then and there that we were going to do the hard work teaching him how to be in this world despite his aversion to it.  Because of this mindset, we were able to overcome the hardest part of his autism by about age 4.  The "hard parts" for us consisted of meltdowns, bolting, trying to jump out of moving vehicles, constant fevers and vomiting, little to no verbal communication, hurting others and getting used to new places, new things, new people and changes in schedule.

Dad teaching Tristen to use the markers to color instead of lining them up  and repeatedly dropping them be hind the desk.


Now that he is 18, I can look back and see continual progress in his ability to function in this world, especially since starting the gluten casein free diet and biomedical treatment when he was 9 years old.
Tristen is a joy I would never trade who gave my life peace and perspective. 

That is my outlook everyday, so if you meet me on the street or out and about, I will always reply positively that I am doing well.

Keeping life in perspective gets me through the tough days. 

Thousands of parents have children with autism with life threatening seizures, head-bang or bite/pinch themselves and others.  Some parents can't handle them as they grow bigger and stronger and have to trust them to strangers.  That heartbreak has to be unbearable. 

Feces smeared on the walls....a life time of diapers....never hearing "I love you".....

It's too much, so these details tend to fall on deaf ears.

I want people to know that life with autism is good and bad.  It will give you the greatest joy and he deepest heartaches.  You will be exhausted and fulfilled sometimes in the same day.

It. is. not. easy.

And it can change from day to day....week to week.

My sweet Tristen, who has come so far, is back-sliding.  He needs to get back to a biomedical doctor who will do the right tests on him to find out why.  I suspect PANDAS/PANS or a strep infection in his gut.  It's hard for him to focus and stay out of his head long enough to follow directions.  He is almost 6" and 160 lbs. and he spends a lot of time running from one side of the house to the other, spinning and jumping and injuring himself badly because he isn't paying attention to where he is going.

The doctors and tests he needs are not covered by insurance, nor are they anywhere close.

When I do open up and tell someone outside of the autism community something that has happened in our lives, I can tell I make them uncomfortable.  I get that it is hard to imagine.  I guess I'm just looking for some acknowledgement. 

Besides the responsibilities of wife and mother and teacher (because I homeschool) and church responsibilities, I have this very real and overwhelming aspect to my life.  My son has autism.  He doesn't have the challenges of many.  But I have this responsibility to keep him healthy and functional for the rest of my life.  That is a huge weight that others don't recognize.

So I ask, that if you know someone whose life is affected by autism, take a moment to really think about the life they lead.  We don't want pity. We want understanding.  And we want this epidemic to end.




Monday, June 6, 2016

18 and Autistic: Preparing for Life Post High School

For the past 9 years we have been using biomedical and homeopathic treatments as we traveled down the road to recovery. 

Recovery from Autism, to me, means that he is indistinguishable from his peers.

Tristen still has far to go on the road, but we have come very far, and as he graduates high school and moves on to the next chapter of his life, we are celebrating his accomplishments, recognizing the tremendous effort it took to overcome so many challenges.



We look on the future with continuing hope.  We are both grateful to leave the pressures of school-life behind and begin adulthood with an excitement of things to come. Learning doesn't stop just because you are not in school. Everyone should be a life-long-learner.  This is the motto we have adopted as we made plans for the next stage in life.

Because Autism is such a spectrum disorder, no two people are the same.  The ideas we have in place for Tristen will not work for everyone.

The limitations we face come from our environment.....the lack of appropriate programs and services in our area, not to mention we have only lived in this small town for 3 years.  With 90% of people with disabilities being sexually abused during their lifetime, we are not eager to encourage his involvement with people we do not know.

Currently, we are renting a home with an advertised "mother-in-law unit" on the property.  It has it's own water and air conditioning, bathroom and washer and dryer hookup.  Because it was once a one-car garage, it is set up studio-like with an open floor plan and there is no kitchen sink, refrigerator or stove.

Our first steps will be to remodel this room (with permission from the owner of course), to add a kitchen island, recessed lighting to give him much needed light, and some cosmetic repairs.  We also need to replace the window and doors so they are more energy efficient. Some of this will be paid for by the owner and some is our responsibility.

We want this apartment designed to give Tristen the best chance at being as independent as possible.
Using a schedule to direct his daily tasks is the foundation to making this a reality.  Because he has been using a schedule since he was two and relies on it and is comforted by it, Tristen will be able to be mostly independent AND productive.

Tristen will be doing his own cooking for breakfast and lunch.  For dinner, one night a week, he will prepare a meal for our family with little help, just supervision.  The other nights of the week, he will be a part of the meal preparation providing him the opportunity to learn a variety of culinary skills.  Eating dinner together as a family gives him a consistent form of social interaction as well as allowing us to check on his health and well-being.  Plus, we just love to be together as a family!

Sundays we will all continue to attend church.  Sunday afternoons, Tristen will visit members to make sure they are doing well.

Monday nights, we will have family night, where he will come to our house and practice party etiquette.  We will have treats and play games.

Tuesday nights, Tristen will attend a church scripture discussion class with his peers.

Friday afternoons, he will volunteer at the local Bountiful Baskets program unloading the truck, carrying heavy boxes and sorting fruit and vegetables.

Saturdays mornings in the summer will be for mowing the lawn and doing other yard work.

Tristen's daily routine will include the following:  Showering, shaving, exercise, scripture study, IonCleanse by AMD detoxing footbaths, brain teasers and puzzles, book reading, creative writing, journal entries, meal making and eating, and gardening, feeding and caring for his cat and doing household chores.

Once a week routines are as follows:  Grocery shopping, laundry and the library.  (I will also do a deep clean of his apartment once a week)

Once a month, we will plan an educational outing and a just for fun outing.

To fill in our afternoons, we will look into the following options:
-swimming
-gardening
-art classes
-karate lessons
-volunteering at the humane society
-community functions for young adults in our church
-community functions for autistic adults
-creating crafts to sell at Polly's Place
-opportunities to work from home for the autism community

My boy has a plan for a well-rounded future full of fun and learning!  I am excited to have a place for us to start as well, and the flexibility to expand as he learns and grows!

If you would like to help us get Tristen's apartment furnished you can check out his college registry at target.com  and search "Tristen Davidson" or find us on PayPal using Meadow.Davidson@gmail.com

*UPDATE!  We are desperately trying to encourage Tristen's independence by completing remodeling on his apartment and supplying him with the essentials needed to carry out this plan.  Despite doing our best, we are running into some snags trying to make this happen. Please if you can send a few dollars towards this project or send a household item from his registry, I know we can make his dreams come true!  Thank you so much!

Tuesday, March 1, 2016

"Mom, tomorrow I won't be a kid anymore...."



When I held my baby boy in my arms for the first time, a calm peace rested in my heart, and I knew in that instant, that I was meant to be his mother.  All the chaos, confusion and sadness, that had been my life up until that point, melted away, and I knew, without a doubt, that God had given me the greatest gift in all the world. 

I never wanted to be a mother.  Spending most of my life until that point babysitting, I had thought it was time for me to be me....to do things without the worry of taking care of others. 

It turns out, being a mother is much more than just being responsible for other humans- making sure they are happy, safe, fed and rested.  Those were just "things to do".  Motherhood is really about love.  You do those "things" out of an immeasurable desire....not just because they are necessary.

I didn't look into my son's eyes and wonder what he would grow to become.  Actually, I wondered what I would become.  I wondered if I could be a good mother, reminiscing on the mother's who I had known and influenced me in a positive way.  Could I really be a "good mother"?

Being a mother is the most important thing to be, I decided.  And I was going to give it my everything, no matter how hard it was or what obstacles were put in my way.  This precious child God had put into my life deserved the best of me.  He deserved happiness and unconditional love.

That's when I decided who I was.

I was Tristen's mom.

Tristen turns 18 tomorrow.

When I was 15, I saw in my future a college far away from home and a professional career.  I would live alone in the woods and people would refer to me as "the Crazy Cat Lady".

Three years later, I knew my destiny was to be a mother, but I had no idea the challenges ahead or where we would be in less than 2 decades.

This son of mine has taught me more than I could have ever hoped for or imagined.

Patience.
Unconditional Love.
True Kindness.
What it looks like to have a pure heart.
Faith. 
Understanding.
Loyalty.
Forgiveness.
He has shown me the power of prayer.
Laughter.
The light of Christ shines through him.
Honesty, despite consequences.
Dedication.
Perseverance.

So today, as I think about the boy I have raised, and the man he is about to become, I don't feel sad that he isn't off to college next fall.  He may not have a girlfriend or be able to drive a car, but MY SON has amazing qualities that most people spend a life-time aspiring to. 

And while we prepare for the next steps in his life, I have no doubt he will continue in greatness.  He is not tempted by the devil as most of us are.  Tristen clings to righteousness, going forward in faith.

Really, what more can a mother ask for?




Wednesday, January 20, 2016

"Mom, thank you for the greatest gift of all..."


I think my favorite part about homeschooling my kids is the time we are able to spend chatting about really important things.  Our conversations are not sparked out of anger or exasperation....we talk about "life" as we live it. 

I like to find teachable moments whenever I can.

Every Wednesday is payday so I go into Wichita to buy groceries.  Tanner had some money left from Christmas, and decided he wanted to look at GameStop.  So after lunch, the boys and I headed into town.  Going "shopping" together is not something we usually do, as they are just happy to let me pick out new shoes or jeans for them when they need them.


Tanner found the used game for a good price, and was very happy to know he would have some money left over. Across the room he spotted a plush-toy that he informed me was rare, and another plush for his collection that was on clearance for under $3.00.  The look on his face was priceless! He had saved his money until he was sure of what he wanted to buy, found it at a good price, and still had enough for two other toys to add to the collection he had been carefully building for years.

On the way home, I told him I was proud of the choices he was making, how he was careful about how he spent his money and how he took care of his things.

At a very young age, my boys were always careful with their toys.  They did not throw them or leave them outside or treat them roughly.  As they grew older, they took care of their movies...then DVD's....then electronics and games.  I never felt like I bought them a gift they wouldn't take care of or didn't deserve.  I also never bought them a toy or game "just because".  Gifts only came on holidays or birthdays for our family.

We were lucky to live near Columbus, GA from 2000 to 2006 because at that time I seemed to find the best deals on toys.  Every spring, all the stores in the city would price their toys at real discounts (remember when clearance really meant more than a dollar off?)  I would get the boys each a gift for their birthdays and holidays for the whole year (and for my nieces and nephews) and save a substantial amount of money.  I could have spent more on them, but I didn't.  One modest gift for each occasion was enough....and because of the early shopping, I was able to get them good quality toys, too. 

Taking a huge garbage bag and cleaning broken toys and trash out of my kid's rooms was never needed.  Items in their possession rarely broke.  Their rooms stayed clean. 

Now Tanner is about to be 16 and Tristen is about to be 18, and when you've been taking care of your possessions, and only buy things that are really truly wanted, it is easy to accumulate a lot.  Moving often helped us to weed out the toys they outgrew them.  With tears ( only mom's) we said 'good-bye' to Bob the Builder, Blue's Clue's, Dora, Care Bears and Veggie Tales.  (I kept all the Thomas trains for myself). 

Tristen and Tanner know how blessed they are to have as much as they do, and they show this by not only being respectful of their things, but also by sharing with others.  Often times, they will use their birthday or Christmas money to buy each other a gift, just to see the smile on their face.  We continue to keep our gift-giving very minimal to ensure they are meaningful.  And since my kids take care of what they have, end up having a lot in the end. 

Just because they have a lot, doesn't mean I will stop buying them appropriate gifts.  I don't believe they should be punished, and have to get rid of their things they have cared for, just because of the sheer volume.

Their rooms stay spotless.  They do their chores every day with out being asked.  They are respectful and love their family.


I don't care who thinks they are spoiled.

Neither of my teenagers own a functioning cell phone.  They don't have tablets or Ipads.  Tanner has a savings account to buy his own computer.

Tanner asked his dad if he could have one of his old game systems for a birthday gift this year.

I don't believe for a moment my kids are spoiled. Very blessed, but not spoiled.


***

I'm not a perfect mother.  My kids mostly had this personality trait on their own.  I nurtured it.  

I wanted to take the time to explain to them how proud I was of them, for being careful, kind,  conscientious, appreciative and respectful.  So, I told them all I mentioned above.

"Wow....I never knew that."
"What didn't you know, Tristen."
"I never remembered I was so good to my trains."
"You were.  It makes me very happy."

We unloaded the groceries and talked about dinner and our evening plans.

Tristen stopped.  "Mom, thank you for the greatest gift of all.  Teaching me responsibility".

"Thank you, Tristen, for being so willing to learn."




Tuesday, January 5, 2016

Just because my son doesn't have a job, it doesn't mean he's worthless

My oldest son who has autism will be turning 18 in less than two months.  We are preparing for the next step in his life.  His future looks different from other 18 year olds who will be graduating this spring.  He is not going off to college. 
Luckily, we are homeschooling, and we were able to discuss his future this Monday.  My heart was filled with joy at his excitement of starting the next chapter in his life.
We have been blessed to live in a house with a small mother-in-law apartment attached.  This is going to serve the perfect place for my son to shine with independence, while mom and dad can still keep a watchful eye over him.
We talked about the things he will need for his apartment. A discussion of chores and responsibilities ensued.  He didn't want to forget about his cat.  I could see a sense of pride and accomplishment come over him. To say this was a day I will never forget is not an understatement.

When I shared the our excitement with family and friends we were met with frowns and exacerbated looks.
"So what will he DO all day?"
"Surely there has to be some sort of PROGRAM for him?"
"Can't he be a greeter at Wal-Mart or bag groceries or something?"

These people were sorely missing the point.

Having some menial task in the community does not define one's worth.
Becoming an adult and no longer attending "school" does not mean that one completely stops learning.
And the obvious....the point totally missed....is that this young man has AUTISM but has worked his butt off....harder than most for the simplest of tasks....and he has made it to graduation and will be able to live in HIS OWN APARTMENT.

This is no small thing.  And it is definitely more exciting than if he were going to sit at home on the computer and go to bag groceries a couple of hours a week.

This.  This is huge.

Tristen is very routine oriented and has a wickedly sharp memory when it comes to daily tasks.  He knows how to do laundry and prepare meals.  He knows about self-care and safety.  He knows how to properly care for a pet. 

He will need help going to the grocery store and buying food and paying his bills, but I am confidant that in time, he will be independent in that regard as well.

Tristen has a great grasp on health.  He is has always been very focused on eating healthy and exercising, which fits in perfectly with successful adult habits.  We talked about continuing to learn by reading good challenging books and keeping his mind sharp doing puzzles and games.  Tristen is also ready to continue to volunteer in the community and attend his church meetings.

In many ways, he will be much more well-rounded and successful than other teenage boys his age.

These are the things to cherish and be grateful for, instead of thinking about what is lacking.  I whole-heartedly disagree that the only way my child will find worth in adult hood is being part of some community program.  That doesn't mean at some point he won't find a job that suits him or a place for him to make friends.  But for goodness sake....he has made great progress and is going on to have a very fulfilling life. 

If you can't see that, keep your comments to yourself.  Tristen is going to be busy being awesome.















Just because my son plays video games, doesn't mean I'm a bad mother

Somewhere along the way, video games have gotten a bad rap, and so have the parent's that let their kids play them.  This has become such common knowledge, that many parents feel superior to any adult who allows gaming in their home.

I can tell you that I did tip my toe into the gaming world ever so slightly when my kids were young.  In face, the first gaming system my boys had was purchased by me, as another form of learning.  It was called the V-smile and it had simple games for young children (back before Ipads and Iphones) to learn their ABC's and 123's.  You see, my child was diagnosed with autism, and it was particularly difficult to get him to be interested in something long enough to learn it.  I should have bought stock in LeapFrog, because that's where our money went to every holiday.  It was all about the learning in our home....for both our children....and we, as parents concerned about their well-being, wanted to give them all the opportunities we could to learn in various forms.

My husband was an avid gamer, but spent most of their formative years deployed.  We had (and still have) a strict rule about the types of games he is allowed to play in their presence.

My youngest son was in about first or second grade when he got a Gameboy for a gift.   I wasn't extremely thrilled, as I wanted to try to keep them from too much video game playing for as long as possible, but he really enjoyed it and it helped to keep him occupied on long trips.  What I realized was, that I had control of what kinds of games he played and how long he played them.

This was really a formative point in our relationship with games and how they affected us and our lives. 

When my kids were very young, we spend every afternoon outside.  In the sandbox, on the swing set, riding toys around the sidewalks, going to the park and the pool.  We were always outside playing letting them get all their little boy energy out.  And they loved it.

But my kids aren't like most kids.  They got sick.  They were sick A LOT.  Constant rashes and blisters plagued them.  Soon it became apparent the grasses, sand and pollen were having a negative affect.

As they grew older, we bought them bicycles and taught them how to ride bikes, but they were uncoordinated and did not feel well when they were outside.  Soon we found out they had seasonal allergies.  This didn't stop us from expecting them to participate in school and church activities that required them to be outside, but they began to choose to be indoors during their free time more often than not.

Now, by boys are just a few short weeks shy of being 16 and 18.  They never developed much talent for sports and felt awkward trying to keep up with their peers.  Camping was a fail, as the weather, bugs and nature seemed to have a negative affect on them.  Fishing proved unimpressive.

Common comments to me have proved quite offensive when referring to the time my boys spend playing video games, and I felt the need to write to explain why my teenage boys enjoying some game time does not make me a bad mother and it most definitely does not make them bad kids.

1) We continue to monitor what kinds of games are played.
My soon to be 18 year old only plays Lego games.  Lego Batman.  Lego Star Wars.  He plays in spurts.  He might really enjoy playing a couple of hours a day for a few days, but then he goes on to something else.  He doesn't play any online games.
My soon to be 16 year old is not interested in games with blood and gore and he does not like foul language.  He enjoys playing games that are usually geared toward kids around age 10.  He knows he has schoolwork, chores and lunch to do before he can play and that the TV is always Dad's when he gets home.  He sets up a little time for himself every afternoon and then moves on to other activities.

2)We continue to monitor how much time is spent gaming.  We also monitor their mood and agitation level.  A rule in our house is that if it causes you to become angry, frustrated, or upset, then it really isn't "fun" anymore and shouldn't be played.

3)Our children do as they are asked.
Untypical of teenage boys, they are not allowed to play anything after 10pm.  They wake up about 6 am every day (even though they are home-schooled) and stick to a rigid routine for breakfast, school, chores and lunch.  They do extra chores when asked without complaint.  They are kind and respectful to their parents and each other.  Why wouldn't we let them do what they enjoy in their free time?

4)Our children are not social.
Social awkward is an accurate description.  They don't relate well to other children, and most of their peers enjoy movies, games, dating and cell phones that my boys have zero interest in.  We have taught them to be "in" the world, but not "of" the world.....and that can make it hard to have friends with the same interests and values that you have.

At the end of the day, these are my children.  Their compliance and personalities dictate what rules we enforce in our home.  Maybe if we had different children, who were more obsessive or more defiant, we would have reason to limit their activities more.  Because we have been consistent in our rules and consequences from day one, gaming is only a small part of our lives that we do not see as an issue.  We are fully aware it could become one and if that happens we will deal with it accordingly. 

Video games aren't going away. They are a big part of the culture of the times, and I believe being too extremely strict could backfire at some point, causing them to rebel against all our rules.  Especially for kids who are socially awkward....a video game may be their only way to connect with another human being.

Just because my kids play video games, doesn't make me a bad mother.  But judging someone else's parenting on one fact, without understanding their unique situation, makes you a pretty mean and misguided person.

Sunday, January 3, 2016

Reflections on Material Possessions

Somehow we made it through the holidays.  Here we are, a little battered and bruised....but we made it to 2016. 
My husband's mother and her husband were able to make the trip from Oklahoma to stay with us for Christmas through New Year's.  We had a nice time.   Nothing big or fancy, but just enjoyed time spent together with relaxation and good conversation. 
I've spent the time since, thinking about some casual comments made to me about things in our home that I brushed off at the time, but have begun to fester.  Comments about the decoration of our home, the state of our linens, mismatched furniture etc.
One of the things I really enjoy is decorating a room.  I love to find an object to base the room on, pic out paint colors, match and organize.  Walking into a fresh clean room is like a breath of fresh air for me.
We moved into our new home about five months ago and the first thing I did was imagine how I could decorate in a way that wouldn't break the bank.  We live a very frugal lifestyle so we can afford to care for our medically fragile family.  Autism is not cheap, and we are grateful we know what to do to help our son overcome the difficulties he faces each day.  Because of this, "things" do not have much value to me anymore.  Even though I love to decorate, it is just a fraction of what I would do if I had unlimited funds....or even some allotted funds.  So, all I decorated after the move was the two boys bedrooms.  It was enough to get me by and the rest would have to wait.
During the holidays, I was of course, thinking about gifts.  The last thing I wanted to buy for anyone in my family was useless "stuff" and it was also the last think I wanted to put on my list.  I didn't want anything I had to dust and nothing that would completely lose it's value the moment purchased, like a boxes set of a TV series.
I could think of things we needed....new underwear is always a useful gift!  Maybe a robe or slippers when the house gets a little cool.  But in reality....nobody really NEEDED anything...and I was relieved. I felt very blessed and content.
But then the comments started. 
Were they true?  Yes.  Most of our towels are stained mismatched and falling apart, in all three bathrooms and in the kitchen.  Are the pictures on the walls small and bland....sure.  Furniture mismatched....Yep.
I never let myself feel bad about these things.  After all, it's just "stuff".  Do we have a couch to sit on?  Yeah we do.  That's all that really matters to me at this point. 
I need my family to be healthy.  My thoughts are on vitamins, supplements and detox, not frilly wall d├ęcor.  It's just not what's important.
One day we will be able to buy new linens that all match and paint the walls and take out this old carpeting, but for today.....I remain grateful that we have what we NEED. 

I know what was said was not to intentionally be offensive.  At first, I started feeling really insecure about my home and letting people see it.  Does everyone look at all that is lacking?  I for one, see the potential here and just because we can't get it all done right away, doesn't take away from it's value.
My family's health is first and foremost.  And if it's not a functional item in this home, well, it just costs money, collects dust, and takes up space.

This was a good reminder, to not let anyone ruin your happiness.