"Pee in a Cup!"

Set the stage:  Two year old grins while running to bathroom and says, "Gotta tee-tee!"  The mom beams as she helps the tot onto the step stool and then the big potty.  Cut to scene two: The mom hands the child a sticker, and the toddler sings, "I'm a big kid now!"  At this point if you have a child with autism you may be laughing, crying, or maybe both.  Reality for many of us tends to look more like this: zoom ahead 3 to 5 years, a toileting schedule with pictures, a lot of crying, and pee and poop everywhere!  Many kids with autism don't potty train until they are 5 to 7 years old.

The same physical milestones need to be met for all kids.  Each child needs to be aware of when they need to use the toilet, and they need to be able to hold their pee and start to pee once on the toilet.  Kids who have  autism may also have other milestones  to meet.  My son had issues with the loudness of the flushing toilet, body in space issues, fear of not being clean, fine motor/clothing issues, and lack of ability to model the process.

Potty training at our home required many things that included pics from Boardmaker showing each  step of the process, a schedule for bathrooming, endless patience,  a ton of laundry, and red Solo cups. 

Our very first step in Alex's potty training involved me getting over my own hangups.  My child was past the typical potty training age and I felt like a horrible failure of a mother. I was wrong to carry such guilt.  It just made things worse for both of us.  Through prayer and the awesome support of my family and friends, I realized that delays caused by the autism really are just delays.  That means "later"--not "never"!  And I learned that even if "never" is the eventuality, there are always Depends!

Next, I worked with Alex's teachers and paras on creating a picture set to show "the process" that we would use at both school and home.  We put him in underwear and took him to the restroom every 45 minutes all day long.  He still wore pull-ups at night, at church, and school.  He had minor success at home, but still didn't tell us when he needed to go.

After a couple of months, I began to notice that he seemed very nervous about "letting go" when he would need to urinate.  Sometimes he would freak out and run away peeing all over the floor as he went.  We tried stickers, penny boards, even reward candy--nothing  worked. 

One day in early November of that year, I'm sure more out of sympathy for my carpet than an actual teaching moment, I grabbed a Solo cup for him to pee in.  Immediately, he "let down" and began to pee.  I held the cup close to his body so he didn't have to see the pee at all, and it didn't fly everywhere.  SUCCESS!  He began to use the cup all of the time, we rinsed it out just like you would a training potty.

During Thanksgiving break, my husband and I started to hold the cup between Alex and the toilet.  After a couple of days when he learned to aim, I "forgot" to get the cup and he peed in the toilet!  He still would say, "Pee in a cup!" every time he needed to go, but he was toilet trained.  He #2 trained the next week.

I know the Solo cup is not the answer to all potty training issues, but that one simple thing helped Alex to overcome so many of the things that were getting in the way of his success.  I felt compelled to share this story because before I looked at his lack of being toilet trained as a disability that I had failed to help him overcome.  I kept trying to teach him through conventional ways like reading Potty with Elmo, or trying  to have him model after going potty with daddy, and so on.  But when I stepped out of the box, I was able to listen to what he needed and accommodate him.

He achieved a major life goal through unconventional means.  That is the way we do it!  Whether its toileting or math, we set a goal, follow Alex's lead, and give him the accommodations he needs to achieve the goal.

Have a Merry Christmas...Instead of a Merry Meltdown!

Beginning in November we experience and enjoy so many wonderful holiday things.  Intricately decorated trees, decadent foods, delicious smells, family visits, the hubbub of shopping, and Christmas music just to name a few.  My son Alex, who has autism, experiences the same things, but feels drastically different about them.  In years past he has taken it a personal challenge to figure out how the tree "works".  Alex is not impressed with fancy Christmas food, strange smells, trips to overcrowded stores, and pretty much everywhere is considered too loud.  We don't get to visit much during the Christmas holiday because we live very far away from our families, and my husband's work schedule won't permit us to travel.  For many families who are blessed with Christmas visits, feelings about them can be bittersweet.  Nothing beats a worn out kid who tells everyone to "get out", or announces while at grammy's that its "time to leave this stinky place!"

The following is a list of things that our family has learned, mostly by failing, over the last few years.  Alex has been able to reduce his meltdowns, gracefully survive the 1 or 2 that are bound to happen, and the main goal-enjoy being with the rest of the family while we celebrate the birth of our King Jesus!

1.  Decorate the house in stages.  This allows Alex to get acquainted with the "new look" in his own time.

2.  Limit number of gifts to be opened by all of the kids on Christmas morning.  This seems to work well for all of our kids.  No one gets overwhelmed and melts down.

3.  Create private "chill-out" spot at home or away.  It is essential to have a pre-planned place for Alex to go to cool down when he is stressed emotionally or socially.

4.  Travel with the picky eater's food.  The 30 course meal is fabulous for most, but Alex experiences much more peace on earth with a peanut butter sandwich! Taking his/her own plastic plate, cup, and flatware is also a great idea.  Gramma's Christmas china will thank you later!  .....same-y same-y is the name of the game-y!

5.  Communicate the schedule with your family.  Whether verbal, written, or picture, schedules will keep everyone calm by knowing "what comes next".  Example-First we will eat dinner, then we will open presents.

6.  Be realistic with time expectations.  Christmas is my favorite time of year, and I would love to attend everything possible!  My family cannot be expected to attend every party, performance, special church service, etc.  My husband and I take into account his work schedule, all invites, and obligations, then we plan and schedule, and finally graciously decline what we know our family can't handle.

7.  Lay down the perfectionist attitude.  This one is for me personally.  I get so wrapped up in when things have to be done, that everything is just so-so, and I forget that my kids need me more than usual.  I have to act with purpose and spend the time with each child when they need it.  That may mean that I have to reschedule that last minute trip to town, or even that Christmas dinner will be a tad late.

8.  Use their obsessions to help make Christmas their own.  Last year we decorated a small tree with police officer and firefighter ornaments.  Alex was very proud of his and Austin's tree.  The decorations and the lights were mesmerizing and kept him focused on something he loved.  This year its the great white shark....

9.  Teach your kids.  We read Luke 2 to the kids on Christmas Eve with a Nativity on hand for visual support.  Before Alex could handle breakables, we bought a magnetic Nativity from Mardel in OKC.  Now there are plastic sets out by "Little People" from Fisher Price, and "Veggie Tales" that each typically retail for under $30.00.  Too cute!

10.  Put together a bag of tricks.  A favorite movie(and player if needed), small toys, books on current obsession, and whatever else can bring them immediate comfort under stress.

This list is not exhaustive. I'm sure there are many more things to add, so feel free to add them in the comments section.  And most of all, have a Merry Christmas!

I.E.P. Week: The Good, The Bad, and The Indifferent

A.R.D. meeting time!   A.R.D. stands for admission, review, and dismissal of information regarding the I.E.P., transportation, and anything else regarding a child with special needs in the great state of Texas.  Several weeks ahead of the meeting we receive an invitation in the mail and one in our son Alex's backpack.  I check the "yes" box that I will be in attendance and send it back to the diagnostician.  Very simple communication through benign paperwork...harmless..right?  No.  The anxiety starts building as I'm forced to realize that summer is over and that I must face Alex's deficits as well as his achievements.  The week before, the week of, and the week after the A.R.D. meeting, I am an anxious, nervous, "crazy-mom-of-a-special-needs-kid" mom(well, more than usual:-).

The Good
This year Alex received a completely new i.e.p.  He mastered all of the objectives from last year!  That is such an awesome feat.  He worked very hard through the summer to ward of any regression.  He attended the six days of extended school year services that his school offered, and he worked an additional three days a week on a home program that I put together.  Alex reviewed his old i.e.p. objectives regularly throughout the summer.  He even stuck his toes into the water on a few new ones.

Alex is attending school on a different campus than he has for the past three years.  His A.R.D. team met on October 4th at 8:30 am.  I was very impressed with the other team members.  They were all very professional, yet laid back.  The diagnostician ran the meeting efficiently, but she was not pushy.  Everyone in attendance gave their concerns, ideas, and praise for my child.  The meeting was productive and pleasant.

The Bad
On the outside I wore a smile indicating my appreciation for their effort, my child's progress, the relief that we are all on the same page about our expectations of him, and simply that I don't have to ready for battle.  On the inside I felt waves of emotion crashing against my heart.  I replayed every word in my head listening for the "implieds" and "read between the lines" moments.  I walked to the car with tears welling up in my eyes, but pushed it all down.  I was raised in Oklahoma and now live in Texas-my southern ways tell me to dry it up, smile, and call and report to family and friends that I made it out alive.  I cried later...a lot. 

Its hard to wrap my head around all of the facets of autism that affect my Alex, much less go and discuss them with a team of professionals.  I cry for relief that he is not more severe.  I cry because of his level of severity.  And I cry for the future.  I know, and have even given the lectures of "God takes care of those who love Him", and "you can't overwhelm yourself with the future-you have to be here for him now"......but I still cry.

I once led myself to believe that I would grieve and make peace with not knowing what his future held.  That's what works for me...meet the grief head on---hurt like crazy---and then move on.  That method doesn't work here.  Each year I am guaranteed a season to evaluate both where he is and where he is going academically, behaviorally, socially, and emotionally.  In that season I am guaranteed to feel guilty, sad, confused, and lost.  I drive myself crazy with thoughts of what I should hope for, what I should expect, and what kind of life does he want.

The Indifferent
Now that my three weeks of annual insanity are over, I must push away the fear and constant postulating.  I am his mother, his advocate, his friend, his father's wife, and his siblings' mother.  I need to be indifferent to the future.  We have set a track and he needs me to run his race along side him.

And the Lord said to him, Who has made man's mouth? or who makes the dumb, or deaf, or the seeing, or the blind? have not I the Lord?  Exodus 4:11 

Come to me, all you who are weary and burdened, and I will give you rest.  Matthew 11:28

I understand that God has a plan for His kingdom to be furthered by Alex's autism.  I am still a mom and I get selfish and scared, but Matthew 11:28 is an invitation and a promise that is wonderful and true. I am able to give Him my anxiety and stress, and He allows me to feel the joy of Alex's accomplishments, and for me to be indifferent to the things I can't know about or fix right now.



The Vaccine War vs. The War for Our Children with Austism

Embarrassing as it is, I will admit that I just watched "Frontline: The Vaccine War" last night.  Netflix is slowly catching me up in my missed tv viewing.  I was left breathless at the complete disregard that the doctors and other professionals seem to have for the parents and their opinions.  I was appalled at the studies that were touted as being the end all be all answer to refute the possibility that vaccine injury could cause autism.  Finally, I was left wondering why 1 in 100 babies born in our country are so unimportant that the only "sound science" that comes from the government comes about from trying to prove parents wrong.

Parents of special needs children are often thought of as being high-strung, self-important, deluded, or just plain crazy.  We sometimes earn these titles fair and square.  There is typically something at every moment that needs fixed, advocated for, or to have a better understanding of.  We are in a constant dialog with doctors, teachers, therapists, family members, church members, and often the community at large.  Sometimes, if we are not careful, our zealousness for ensuring our child has every opportunity afforded to he or she results in others asking us to just take a chill pill. The health care professionals on The Vaccine War documentary spoke as authorities on vaccine injury, child development, and the neuro-sciences--and still, they acted like parents were suffering from Munchhausen's syndrome because they reported regression in there child after a series of immunizations.  So, I will concede that I may chase a few rabbits in my quest to provide adequate health care, education, and community awareness for my child, but don't tell me that I want my child to have autism!  I tried to convince myself and all around me that it 'was just' apraxia, late development, or some other benign thing that we could overcome with a year or two of speech and occupational therapies.  I charge the CDC and NIH with finding out what then, if not vaccines, causes autism.  Autism is the epidemic--not crazy parents!

The Vaccine War reported that the Lancet had recalled their publishing of Dr. Wakefield's study.  His study was not conclusive, but neither was anything the scientists had to offer to refute his findings.  There is an old adage, "Where there is smoke, there is fire".  That is how I would describe my thoughts on the collection of studies that are available for reading right now.  It seems too convenient that the same people agreeing that vaccines don't cause autism are the very people who benefit financially from vaccines, or the importance of their career rides on their undying support of vaccines.  If Merck just paid you a gazillion dollars for a roto-virus immunization, you are not likely going to speak against vaccines--are you? 

As a country we have tested ketchup, plants in space, the effects of stress, and greenhouse gases to name just a few.  We have given incentive money to people to buy houses, cars, and energy smart appliances, but still no national, all inclusive studies on autism or vaccines.  Please correct me if I'm wrong.  But I know for sure that my family nor the other 30 to 40 families that we know who have with children with an autism diagnosis have ever been contacted by any federal government entity to ask us for our child's medical file.  The  bureaucracy that surrounds many offices in our government gives birth to the "we don't pay attention unless there is a lawsuit against us" way of doing business.  So, again CDC and NIH, you have had a quaint study or two that says that vaccines don't cause autism, what does?

Even though I sound trite in writing these things, let me reassure you that we don't fight in the vaccine war.   I fight in the war for my child!  This means that I tutor him at home to help meet his I.E.P. goals, I spend tons of money at a Children's Hospital to see the most qualified doctors, I work and communicate with the school daily, and tomorrow night at the school board meeting I will be presenting the case for a fenced in playground for the campus he will attend next year.  It is time to show some respect to the parents and kids on the true frontline of autism, and time to quit smiling politely when everyone has a different opinion and begin to demand accountability first from ourselves and then the government on what we are all doing to better these kids lives.  If my child has autism for the greater good of herd immunity, it is unacceptable.  It should not be enough to unequivocally deny that vaccines cause autism--show me what does!

2, September h- A.R.D.

Alex's first A.R.D. of the year was today.  This morning at 8 o'clock in the morning, five people with a stake in Alex's education met in the diagnostician's office.  We sat around a giant conference table and discussed him.  We reviewed the findings of Dr. Kaimman, her recommendations, and what should happen in the classroom for Alex until his next A.R.D. meeting in October. 

Five people discussed our son both clinically and personally for about thirty minutes.  "Discussed" is the word that just won't go away.  "Discussed"--I suppose all parents "discuss" their children with their teachers, doctors, and other people with a stake or responsibility in their well-being, but I'll just say it---ITS WEIRD!

Reread the first paragraph; "discussed", "findings", "recommendations", these are not words you typically associate with a 6 year old.  I don't forget that he has special needs, but I forget that is not normal for everyone else in the world.  Certainly, I'm not complaining about today.  The above mentioned A.R.D. went  smoothly.  Everyone was in one accord, but still, I must marvel at the strangeness of  of "discussing findings and recommendations" when talking about my little guy.

Alex is a beautiful person.  He is cute, sweet, funny, smart, and he cares deeply.  He is so many things that I can't even find the words to describe! I worry because I am afraid that people only see him on a clinical level.  Alex's brain is clouded,  his behavior affected, his gross and fine motor skills affected, his social skills affected, as he reacts to life through the giant cataract of neurology, called Autism.

Alex is classified as a first grader this year.  The word classified allows for the mind to wander into dangerous territory.  Will he ever be a true (insert number) grader?  What will he be?  Well, I have prayed hard this week and last, I have done my best to close my mouth and listen(for you who know me--you know that in itself is a miracle!), and I have sought the counsel of my wise collection of family and friends.  I have decided to shift my thinking.  He will be who he will be.  God gave Alex his life and allowed for autism to be in it.  I know that regardless of what we "discuss", "find", or "recommend", we have a wonderful gift from God to love and cherish!  We are going to always set goals.  We will always push him out of his comfort zone to learn.  We will always expect things from him just like we will do for our other children, but on his level.  We will always love him!

Matthew 11:28-30 

"Come to Me, all who are weary and heavy-laden, and I will give you rest.  Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls.  For My yoke is easy and My burden is light."

Everyone needs help carrying their burdens from time to time.  Jesus promises to give us the rest we need.  When we surrender our lives and the seemingly unsolvable circumstances of our lives to Him, He lifts us up and provides a fresh hope and wisdom.  Sometimes things are too hard for me to handle, but nothing is too hard for Him.  He promises to refresh us when we cry out to Him. 

Thank you to all of our family and friends that have allowed Him to talk through you, comfort, edify, and challenge us this last week.  Our family is truly blessed!

Pioneer Girls

Today, Brooke and I were Pioneer Girls!  We made our own powdered laundry detergent!  What a great project for us!  We grated soap bars, added washing soda, borax, and some eucalyptus essential oil.  It washes great and smells even better! 

I researched making our own soap, but I don't think she and I are "Pioneer" enough to render animal fat and play in the lye!  Lye is dangerous and animal fat is...um...gross!  Maybe when she's older and we have goggles and such to play with..or not.  Anyway, this was a fun and easy thing to do that she could help with. 

 I can't help but think that my Meme and my Grandma Martha are looking down from heaven with approval.  Both of these women lived through the Great Depression and made vat after vat of lye soap in their lives.  They washed their clothes on a wash board and hung them out on clotheslines.  They boiled water over wooden fires to prepare everything from dishwater to baths.  I think they would appreciate that in this life of such abundance, my daughter is agreeable to do things "the old way".  I am proud of my little 4 year old Pioneer Woman.

Back to the future.....Brooke helped me package and mail my ebay merchandise today.  She has been the most help!

Alex's first full day of school was awesome!  He has told me about the other kids in class and his new teacher since he got of the bus.  I am proud of him for being so independent.  Six year olds with autism typically have trouble transitioning from being at home for any length of time and then beginning school again.  Alex seems to be adjusting fine.  I pray that the Lord will continue to give me the strength and direction to do what Alex needs me to do. 

I am so thankful today for each of my children and Bob!  What wonderful blessings!

Doulos

We starting reading a book today called The Gospel According to Jesus Christ.  Just finishing chapter one and this book is amazing!  An old book, published in the late eighties, but what a timeless and honest capture of the Gospel.  Not for the faint of heart!  But for those full of heart with Christ as their Master.