Transitions and new seasons

I haven't taken the time to post much lately. Life has been crazy busy for us. Things are changing and the children are growing. Earlier this week, I had a meeting with Amanda's principal regarding her future after graduation in June.  When she asked what I wanted for her after graduation, the first thought that came to my mind is I didn't want her to be autistic.  Unrealistic, selfish, and absurd, but it was my very first thought.  When your child is graduating from high school, there are normally so many avenues and decisions they make.  But my child isn't making these decisions, I am.  It saddened me.  I said I want to her to find a job in the typical work force.  One she will enjoy and feel like a contributing member of society. This is also what she wants.  But, then I think of this new season quickly approaching and I selfishly think of how this will affect me.  That's awful, but I couldn't help it.  There will be no bus picking her up at 7 and safely returning her to me at 4.  Her transportation will now solely fall upon the family.  We will be the ones to take her and pick her up.  We will do it for her of course.  Just as we have done everything we can thus far.  But MAN, it's another responsibility.   There will no longer be a classroom keeping her occupied during the day.  Part time work will keep her busy but what can I do to make sure she is happy and involved?  Another thing that will fall to the family.  Now I am faced with this tremendous mental fork in the road.  One path can make me reflect on how far she has come and everything she has done.  I think back to my severely autistic toddler who could not speak and sat in a corner banging her head on the wall unless we were watching her favorite Rugrats episode for the millionth time, who became a beautiful princess and proudly walked on stage and spoke about her autism.  I wonder what more God has in store for her and what else she is bound to accomplish.  The other path is very dark and self-pitying.  This path reminds me of how much work her adulthood is going to be on me.  It's my choice where I will focus, and I am sure I will spend much time on both paths.  I'm only human. But this angers me so much that I would allow this to become about me and not her.  Parents watch their kids grow and move on.  They get to reacquaint themselves with their spouses.  I will never have that and dang it, I'm jealous!  But, this is the life God gave me.   He dealt me this hand for a reason, and I will survive.  I just ask my friends and family to not scold me for my occasional pity party.  I am sure most days will be great, as they are now.  I will make sure of that, as it is my choice.  But allowing oneself to grieve for lost dreams is a normal part of being human and I am learning that.  I shall not dwell on that dark path, the other, lighter path is so much more fulfilling.  One day at a time.  Jesus take the wheel.

Our Trip to Disney!

It's been a while since I've written, life has been very busy, but with April being Autism Awareness Month, I decided I better put up at least one big thing that happened for Amanda this year.  WE WENT TO DISNEY WORLD!  We went on vacation in October 2012. 

One of my fears was that she would not be able to handle the airplane.  With her sensory issues, and her ears, I had no idea how this was going to go.  But, as we always do, into the fire pit we went!  We talked and talked and talked about what it would be like, and she showed very little signs of anxiety as the day approached.  All she knew was that she was going to Disney, and that was good enough for her.  She knew she was going on an airplane, and she knew we would have to wait in line at security.  I explained in detail how it was going to happen, and all about the lines, and how she had to take off her shoes and walk through a metal detector.  But to her, it was an adventure, and she was looking forward to it!

Finally, the day came, and off we went to the airport.  The whole family was so excited that we could hardly stand it!  The time for security came and she was stemming but took her shoes off and giggled and laughed the whole time.  Since she really has a fear of loud noises, going through the metal detector was a little scary, because she was afraid it would beep, but once she went though, it was all smiles!  I informed the people at the gate that I was traveling with an autistic child, and they were great.  We got to board first to avoid the crowds and were able to get settled into our seats without incident.  Kristopher, Zachary, and Dan were behind us, Amanda, MacKenzie, and I were in the three seats right in front of them.  I put Amanda in the isle in case we had to make a quick trip to the bathroom, which was fine since MacKenzie insisted in a window seat.  It was the first flight for all the kids, and they were all excited and a bit nervous.  The time came to fire up the engines, and Amanda didn't quite like that, but she was ok.  Then we started to taxi.  I explained to her how she may feel a little drop in her tummy when we took off.  The anxiety was starting to kick Inok, it'll be ok, it'll be ok."  MacKenzie, looking out the window yelled "Oh my God!  We're so high already!"  Amanda was crying a little, but talking herself down.  I was so proud of her!  I kept telling her that as soon as we were high enough we could turn on her laptop with her music.  She composed herself so much!  As soon as we were at flight altitude, she smiled and told me how much fun flying was!  YAY!!!
for her and for me.  But we were determined to make it through, like so many other things.  The engines revved up and we started to go...fast.  She started to shake and cry, but I heard her say "just a little drop, it'll be

Well, we arrive and get to our hotel at Nickelodeon Suites Resort.  WHAT A PLACE!  From that point on, we really messed with her senses.  From big crowds to loud music, to ride simulators, to small roller coasters, merry go rounds, you name it, we stuck her into it.  I am so proud to say, the entire week of vacation, without routine, rhyme, or reason, there were NO MELTDOWNS!  It was truly to magic of Disney.

Years and years of hard work had really paid off.  We had a dream family vacation, and even Amanda didn't want to come home!

Stupidity on the Rise

Here's a link to an article I read earlier today.  I can't even begin to describe how angry it makes me!
http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=1&src=tp

Basically what they are saying is that they are redefining Autism.  Instead of trying to find the cause, treatment, or cure, the are now going to be diagnosing less children on the spectrum.  This is their answer to the epidemic.  They will decrease the numbers by neglecting many who are higher functioning.  This will be detrimental to the children without "typical" Autism, and the services they are able to receive with the proper diagnosis will not be made available to them.  This is NOT the answer people.  Wake up!

Christmas is Magical

Christmas is a magical time of year, especially when you take the time to look at it through the eyes of your children.  The excitement, the joy, the anticipation, the expectation of the presents and the uncontrollable curiosity of the coming of Santa Claus.  Is he watching now?  Am I being good?  Their anticipation of sitting on his lap and telling him what they want and immortalizing that moment in a picture.   My small children are counting down, and my 16 year old child is counting down.  Yes, my 16 year old still believes in the miracles of Christmas.  The joy in her eyes is just as intense as that in the eyes of her younger siblings, and yes, she still visits Santa every year and we get that picture. 

That's one of the blessing of autism.  Her childlike curiosity surrounding the holidays is breathtaking at times.  I get asked at times if maybe I shouldn't encourage this behavior in her.  My answer is why not?  Santa Claus is alive in well in my household.  When the time is right, she'll know who Santa is.  Why would I want to take that away from her right now?  But one thing I so install in my children, ALL my children, is that Christmas is not just a day to receive a ton of presents.  It's about family, close friends, and celebrating the most important birthday in history.  The birth of Jesus Christ.  Amanda understands this more than most 16 year olds.  She knows what a special birthday it is.  Since she understand this true meaning of the season, why would I want to sit her down and tell her about Santa? 

This year, I will watch my children in amazement as this day comes closer and closer, and I will not tell Amanda anything different than what she already believes.  After all, I'm 38 years old, and I believe.

Merry Christmas!

Flu Season Is Awful!

Yep.  It's flu season in the wonderful state of Ohio.  We've had some sort of illness going through the house since the beginning of November.  It started with Zachary, he was pukey for a day, lethargic for a week, puked one more time and then he was done.  Then I got some wonderful upper respiratory thing, and then Amanda got the upper respiratory thing.  That cough lingers on forever, let me tell ya!  Today I noticed Amanda's cough had almost disappeared and mine was FINALLY getting much much better.  MacKenzie and Jake haven't gotten bit by the bug....yet.  Just as I thought we were turning the corner....

The stomach flu is awful for anyone.  Amanda comes home from school and seemed perfectly fine.  Then she's sitting in the living room and out of nowhere, she starts puking.  Great...  Now the upper respiratory thing was bad enough for her, but whenever she gets a stomach bug she is nearly inconsolable!  It's awful that I get so frustrated with her because of it.  I try and explain that if she continues to cry, she'll just make it worse.  That if she obsesses about the next time she's going to throw up, she makes it that much worse.  She doesn't just complain a little, we're talking loud sobbing!  As frustrating as it is for me, I was just taking some time to reflect just how bad this is for her.  No, she's not feeling well, and her tummy hurts, but I can't conceive the pain for her.  Tummy aches are bad for anyone, but put extreme sensory issues with that.  She is so uber aware of everything that goes on with her body, a tummy ache must be torture!

It took me just tonight to really think about this.  Imagine if you will the last time you had the stomach flu.  Remember the misery.  Now try and think back to that time, and multiply it by 1000.  If you have super-sensory issues and everything that happens is multiplied by the fact that your brain makes you SO AWARE of every little twinge you feel, my God!  How horrible!  Her tolerance to your typical pains such as stubbing your toe, hitting your funny bone etc is amazing.  But when she has something going on internally that's something entirely different for her.  Her menstrual cramps are awful for her too.  Ugh!  The poor thing.  So as awful as this is for me to watch, it is unfathomable for me to understand how miserable this is for her.

I pray this is a quick little bugger that moves away fast.  Poor thing....

Music Has Always Relaxed Her

Music has always been Amanda's calming source.  Ever since she was an infant, soft music would relax her.  She has always listened to the radio, CDs, and ever since she learned how to use the computer, she pulled up youtube and watches music videos.  I honestly cannot tell what genre is her favorite as she listens to everything.  I'll walk by our home office and one minute she listening to church hymns and the next minute she'll be listening to hip hop.  When we go to church, she'll sway as the choir sings, and when it's time for the congregation to join in, she'll sing at the top of her lungs.  She had never mentioned learning how to play a musical instrument until a few weeks ago she said she wanted to learn how to play the piano.  So I thought why not?

Of course, it's not as easy as calling up any instructor and requesting lessons.  As with anything with Autism, research must be done!  So I go online and start to research local piano teachers.  I sent out many emails explaining our situation with Amanda and asking if they were willing/able to teach a student with Autism.  I don't know how many emails I sent, but there were a lot!  Out of all those emails, I only got one response.  It was from a teacher who mentored someone who has an interest in teaching children with special needs.  She didn't have any experience, but has always wanted to.  I figured, well, no one else has emailed me back, and at least this woman is willing to try, so I called her and set up a meeting.

During the meeting, in order to be fair to both her and Amanda, I didn't sugar coat anything. She had to be prepared for who she was going to teach, and how difficult it was probably going to be.  Amanda can and does learn but it takes time and repetition.  Lots of repetition.  I needed someone who demonstrated both patience and perseverance, and I explained that.  I didn't want to scare her off, but she had to know what she was up against.  She explained that although she has no experience in teaching a student with Autism, she would consider it an honor if I allowed her to experience this with Amanda.  It would be a learning experience for both of them.  She seemed so willing to do it, and I liked her immediately, (that's saying a lot because I seldom like anyone immediately) so I scheduled her first appointment.  Now I have to mention that Amanda was a little silly during the interview and kept saying how she wanted to play the piano like they do in High School Musical.  This is important later.  :)

Amanda's lessons are on Monday nights, and we do have to travel just a little bit to get there, but it's worth it.  So this past Monday off we go to her very first lesson.  I tell her that she is not to be silly and talk about a bunch of stuff that had nothing to to with piano.  She's to listen to the teacher and really, really concentrate.  She was so excited about it that I honestly didn't know how it was going to go that first night.  When we arrive, Cassie (that's the teacher) comes out and greets us.  Amanda gets very giggly when Cassie tells her she has a surprise for her.  We decide it would be better if I just stay in the waiting room while Amanda has her lesson.  Sometimes when I'm in the room, she doesn't feel she has to listen to her teachers because I'm there to "protect" her to something.  So off Cassie and Amanda go.  Cassie sits down and gives Amanda her surprise.  She plays her a popular song from High School Musical.  She had been paying attention to Amanda during the interview, and knew exactly how to draw her in.  Pretty ingenious for someone who's never taught an Autistic student.   She had Amanda's undivided attention right from the get go!  So she had Amanda sit down and Cassie played the first two notes to the song and asked Amanda to follow her.  Amanda listened, and promptly plucked the first two notes.  I could hear everything from the waiting room, and couldn't believe my ears!  Next she explained the pattern of the black keys on the piano and asked Amanda if she could identify the pattern.  She did!  Then she was asked to just play the black keys that were in a set of two.  Again, she did it!  I was in disbelief!  Now all of this wasn't without mistakes mind you, but she caught on so fast!  Then she was shown how to find C, D, and E, and was taught how to play them.  Once she had that down, it was almost time for the lesson to be over.  Lessons are only half an hour.  At the end of the lesson, they played the beginning of the song from High School Musical together, and while Amanda played, she sang along too.  I was soooooo proud of her.  I felt like a dork as I sat in the waiting room with tears in my eyes.  :)

When they came out of the room, Cassie and I both agreed that it had gone MUCH better than either of us had initially anticipated.  Amanda was very proud of herself as well.  I think we may have just found Amanda's niche.  I'll keep you posted!

Teenage Autism

Raising an autistic teenager, at times, isn't much different than raising a typical teen.  They have their hormones, their crushes, their defiance, and their attitudes.  If you have an autistic teen aged girl, they definitely have their PMS.  LOL.  They want to do what they want to do, and they don't want to listen to you.  Sometimes it's really hard to differentiate between what is typical behavior and what is autistic behavior.  The have their own ideas, their own desires, and their own way of doing certain things.  This is great!  What is sometimes a challenge is when they cannot do what it is they need and want to do.

Amanda will be 16 next month.  She has come sooooo far, and I am soooo proud of her!  She wants to get married, she wants to have a job, she wants to drive a car (gulp), she has dreams.  She sometimes asks me "Mommy can I do...."  The question changes frequently, but my answer to her is "Amanda, you can be anything you want to be."  That's what I tell her.  What I ask myself is something entirely different.  I honestly don't know what she will be able to do when she gets older.  As it stands right now, in her almost 16 years, there are so many things that she still relies on me to do for her. 

She can put her own shoes on, and she can tie her shoes.  However, if the shoes are not marked L and R, she often puts them on the wrong foot, and doesn't even realize it.  I don't know how it's not so remarkably uncomfortable for her, but she doesn't seem to care.  There are times she'll put her shorts or pants on backwards.  Again, she doesn't seem to mind.  She is still unable to manipulate buttons and zippers on her pants.  She can't shave her arms or her legs.  I am happy to announce that just a couple days ago, I decided that I was no longer going to help her shower, and FORCED her to get into the bathroom and do it herself.  You know what?  She did it!  And she didn't do a bad job.  Practice will make perfect for this.  Even still, I have to show her what is the shampoo, what is the facial wash, and what is the body wash.  Will she ever be able to just do it without ANY assistance?  I simply do not know.  I hope she can, but I have to say that after almost 16 years, I'm beginning to have my doubts. 

There are days, honestly, I find myself resenting the fact that I may have to continue this for the rest of my life.  I immediately feel guilty about it, and feel like a horrible mom, but these feelings do creep up on me despite my best efforts to stop them.  I am not saying this for pity, and I am asking those of you reading this not to judge me.  I am putting these feelings out there in hopes that other mothers in similar situations find that they are not alone.  The truth of the matter is this.  When I had children, I just expected the normal cycle.  Newborn phase, baby phase, toddler phase, preschool, elementary, middle school, Jr high, high school, college, marriage, and see ya!  Now I have vivid images of me being 72 years old and helping a 50 year old with a bath.  I get sad, I get mad, I get depressed, then the feelings go away and we make some progress.  Then we hit a plateau and I picture it all over again.  My oldest son is almost 19.  I have been bathing children for almost 19 years.  I can honestly say that I'm over it.  At times someone will tell me that's all part of being a mom.  No kidding?  BUT by the time a child is around 8, they're bathing themselves and doing so much more for themselves, and you don't have to do it anymore.  I've done it almost every night for almost 19 years!  Again, I am not seeking pity.  This is just my life with autism.  I changed diapers for 16 years!  From the time my oldest was born till the time my youngest was potty trained, it was 16 years.  Yes, there are 7 years between Amanda and MacKenzie, but Amanda wore diapers, at least at night when MacKenzie was born, so there was no break for me there.  When Zachary was potty trained, I wanted to throw a party!  There are times I wish I could live one day without Autism.  Just one normal day without the routines, without having to do so much for someone else.  Just one day I did not have to be a primary caregiver.  Is this selfish?  Maybe.  Yes I know it's part of being a mom, but if you are reading this, and none of your children have special needs, think back.  How long did you have to do EVERYTHING?  Your children learned and moved on to independence.  Amanda hasn't....and I never get a break.

I don't mean for this blog to sound negative in any way.  But I've said from the beginning that I'm keeping it real.  And these feeling are very, very real for those of us raising children with autism.  Yes, I do suck it up.  I do what I have to do, 99% of the time with a smile on my face because that's who I am.  I do, and will always continue to do what I have to do for Amanda.  But I will say this.  I'm getting tired...

What Causes Autism?

If that's not the million dollar question, right?  The fact is.....no one knows for sure.  Doctors, parents, teachers, lawyers, they all have their take on what causes Autism, but the truth is, that it's still just a mystery.  I haven't a clue as to what caused Amanda's Autism.  All I know is that my pregnancy was horrible, she had some developmental issues in utero, so I don't know.  Here are some of my observations and opinions.  Agree or disagree, that's your prerogative, but unless you have some proof, do NOT correct my opinions.

Vaccines????
That's the big one.  The most controversial reasoning behind Autism today is probably blaming the vaccines.  Whether it be the Thimerisol (mercury), other ingredients, or the disease in the vaccine itself, many many parents have come forward stating that their child changed after receiving a vaccination.  The truth of the matter FOR US, is that vaccines did NOT cause Amanda's Autism.  Now, that being said, I refuse to discount the countless stories I have heard from families concerning the injuries to their children after vaccination.  Family after family cannot possibly experience the exact same thing without there being some sort of connection.  Let's face it folks, if vaccines were 100% safe, the federal government would not now have a vaccine injury hot line.  Now, on the flip side....although they are not 100% safe, I feel, as a parent of an autistic child who's symptoms started from birth, it's worth the risk of a vaccine.  Space them out.  The MMR vaccine can be given in three different injections.  There is no medical need to inundate your immune system with 7 different viruses at once.  Zachary and MacKenzie are fully vaccinated, but I did insist on separate vaccines and I did spread them out.  Rubella can kill your child.  Polio can kill or paralyze your child.  If Smallpox was not eradicated, my children would all be vaccinated against that too.  If I can stop my child from going through these horrible diseases, I will.  I would much rather have a child with autism, than a child dead from a preventable disease.  Many of you won't agree, and you have that right to your opinion, and I respect that.  All I am asking is that you respect my right to my opinion as well.  After all, this is my blog.

Is it environmental?  I don't know much about this subject, but the dramatic increase in numbers cannot be solely on the fact that there is better diagnosis.  Think back to your high school years....were there kids in your high school exhibiting the same type of Autistic symptoms there are today.  I honestly cannot think of a single one.  Yes, there were the "eccentrics", the strange, people with quirks, but not the true Autistic symptoms that are out there today.  Something is causing this, and it's not better recognition of the disorder.  I call BS on that theory and will argue with you till the rapture to prove my point.  Sorry, but that' the way it is. 

Perhaps these children are pre-disposed?  Many children are pre-disposed to allergies, some get the flu easier, some get lots of ear infections, etc.  Maybe, just maybe there is something going on metabolically in these children.  Perhaps they are metabolically predisposed to autism, and when that "trigger" is introduced, then the symptoms begin.  That trigger could be environmental, vaccine introduced, something they eat, I don't know.  But i think some more time should be spent exploring this possibility. 

Why do some kids seem to outgrow it?  How can some kids be "cured" with the gluten and casein free diet?  Why does stem cell transplantation work on some children, but not others?  Why can some talk, but others can't?  Why do some stem, and others don't?  Why is sensory a big deal in some, and others it's not even apparent?  Why do some symptoms start after vaccination, and others have no apparent cause of manifestation?  Why doesn't Applied Behavioral Analysis have to same effect on all of these kids?  The are the questions we deal with every day.  As with any other disorder tho....there is not only one answer.  Why do some people survive heart attacks?  Strokes? Cancer?  Why doesn't all chemotherapy cure all cancers?  Treatments range from person to person, Causes range from person to person.  This is true on all medical aspects, not just Autism.  But why is this puzzle of Autism so hard to crack?  We don't even have to border pieces sorted out and put together......why?

Getting Ready for High School

Earlier this week, I met with Christie from spectrum go over Amanda's IEP for next year.  It was so different from any other IEP we've done for her.  Instead of just identifying a goal for this year, we made a long term goal.  This is the first time ever I've put down what I expect or want for Amanda in the future.  Yes, she will still be getting the three R's, but so much of this IEP is concentrated on independence.  This is very scary for me.  To think about Amanda living independently.  I want that for her in the worst way, and this is what I've worked for, but the thought of it scared the dickens out of me.  It's a cruel world out there, can she handle it?  Over the past several months, I kinda thought I was reaching a reality check so to speak.  I was coming to terms with the fact that she would never leave home, never get married, never have children, and possibly not even hold a job.  Christie told me to not let my fears hold her back.  This wasn't fair to her or to me.  She firmly believes she will achieve most if not all of this.  Not at the time your "typical"child would, but in her own time.  Instead of her early twenties, maybe late twenties or early thirties.  I never thought of it that way, and I'm so glad I have people like Christie working with me to open my eyes.

Amanda has never really stated what she wants to be when she grows up.  When I ask her, she just kinda goes "ummmmmm".  This used to depress me, but when I think about it, really, what 15 year old is sure of what they want in their future?  Most have a little idea, but few have really made up their minds.  This is very encouraging to me.  We're going to look into the things she can do, and build a career path for her according to her skills.  She probably won't be a secretary who is required to type 75 words a minute, but she does have skills, and we need to expand on those.

She still has a lot of growing to do as far as independence.  She still cannot shower on her own, and we've never even breached the subject of shaving.  Handing Amanda a sharp object and trying to teach her something that will make her mad is scary.  LOL.  I don't want her coming after to me with that.  So this summer will be the summer Christie will come into the home and show me how to teach her.  She can do a lot on her own, but a lot isn't enough.  She needs to know and learn how to do everything, and it's time I start letting her go.  I need to let her make the mistakes.  If her hair isn't perfect because she did it, then so be it.  It's all a learning curve, and one I have to learn to follow.  No matter how much it kills me to do it.  I have to let her learn from her mistakes without immediately correcting them.  She needs to figure things out on her own in her own time, and I've never allowed her to do that.  I let her try, she says "I can't", so I fix it.  That's a habit I've been told that I need to break.  I'm not good at breaking habits, but for her sake I've got to be.  She tells me that one day she wants to drive.  I don't know how that's going to go.  LOL

The next few years are going to be rough as I force her out into the world and quite sheltering her.  She's going to fail, she's going to get hurt, and I cannot always be there to "fix" it.  This is good and bad for me.  I want her to be independent, right?  Or do I truly want her to be?  I want to shelter her, but is this fair?  I'm told it's not.  But is it fair to put her out into the cruel world to be hurt and ridiculed?  My other children will be, but they can handle it.  Can she?  I guess I won't know until we try.  God help us.....

Ignorance is NOT Bliss!

There have been a lot of posts this month about Autism Awareness, and I am so thankful for that.  What really makes my blood boil is ignorance.

If you don't have a child with Autism, you simply do not understand what our families go through.  Many people make uneducated, downright rude comments coming from pure ignorance.  One person even said she didn't care to be aware, and thought Autism was just undisciplined children.  Really?  If you know me, you know that Amanda had been raised with the strictest discipline possible.  I never let Autism be an excuse for her to not do things.  I push her to the point of many many meltdowns.  I cannot handle it when people call it the latest "fad" diagnosis.  This is one "fad" I would give anything to not be a part of!  I was reading a post about early screening as early as 12 months.  I am mortified by the comments of some people.  Some are saying "Why?  Stop with all the testing.  Love the child you have."  The fact is, I Do love the child I have.  With all my heart.  That is why I advocate for early testing and intervention.  If I did not "love the child I was given", I would not care what her life holds.  One poster even said that "Maybe they will come up with a test before the child is born, that way you can abort it."  If I was standing next to this person, they would have a mouth full of bloody chicklets.  They have many tests for children before they were born.  Downs syndrome, trisomy 18, and many neural tube defects are detected well before the baby is born.  Some are life threatening, some will need treatment.  But these tests are made, not for the mother to have the option to abort, but to give the parents all the information they need in order to give their baby the best shot at life from the second they are born!  Grow a brain people!

If your child were to have one of the many childhood cancers out there, would you not want to have the diagnosis as early as possible in order to give them the best treatment to overcome this disease??  Early treatment is essential for all diseases, and Autism is not any different, so why the haters?   Just because you used to be a childcare worker, or a preschool teacher does not make you an expert on this.  It does not give you the right to say if these children were disciplined they would not have Autism.  Yes, there are many  undisciplined children out there, but Autistic children are not in this category.  Chances are, the parent of a young, possibly currently undiagnosed Autistic child just does not understand what is going on in their very complex brains.  I have been dealing with Autism for 12 years and do not claim to be an expert.  Just because you babysit does not make you one either.

Autism is a complex neurological disorder.  It is not caused by lack of discipline.  We don't know what causes it.  We don't know what causes leukemia either, but there is still research!  It is not the newest "fad"!  Believe me, it is one diagnosis you do NOT want!  It changes your life forever!  It does exist.  Who are these people, some of them are not even parents, to say otherwise?  Are they going against the experts at the CDC who are recognizing this epidemic, no pandemic?  To say to stop the testing is not only ignorant, it's absurd.  Make educated comments, or make no comment at all!

I will now step off my soapbox.....for now....

Easter is Coming!

I'm just sitting here, on the night before Easter and listening to the kids getting excited about the Easter Bunny.  This includes Amanda.  Yes she is 15, and she still believes in Santa Claus, the Easter Bunny, and the Tooth Fairy.  This is one Autistic Blessing in my mind.

Of course, I want her to grow up one day, but I have to admit that I thoroughly enjoy the childlike naivete that is Amanda when it comes to the holidays.  Right now, she is sitting on the couch with her younger brother and sister, and they are anxious and excited together.  They are talking about what's going to be in their baskets, and it makes my heart smile.  I love to see the look in her eyes at Christmas when the house is getting decorated and she excitedly talks about Santa.  On Halloween, she LOVES to pass out the candy to the neighborhood children as the adults are in character scaring the crap out of them.  Her heartfelt belly laugh is great to hear among the screams.  She talks about getting pinched by the leprechaun on St. Patty's Day, so she makes sure she wears her green to avoid that.  Now here at Easter, she loves coloring the eggs!

One of the best parts is that she understands the TRUE meaning of the Christian Holidays.  She knows and understands that it is really all about Jesus, and finds true joy in her beliefs.  So many children grow up so fast and forget about what it was like as a child on the night before a big holiday.  Amanda, at 15, still has the nervous excitement.  There will come a day when she no longer believes, but for now, this is a part of Autism that my family and I enjoy.  Happy Easter to you all!

Autism Today

In 1995 when Amanda was born, Autism was diagnosed in 1 in every 10,000 births.  Boys were five times more likely to be diagnosed than girls.  This is one reason why there were so many contradicting opinions as to Amanda's diagnosis.  She was a girl, and girls just really didn't have autism back then.  Today 1 in 110 children will be diagnosed with Autism.  Boys are still more likely to have the diagnosis, so the CDC estimated that 1 in every 70 boys will be Autistic.

When most people hear Autism, they think of the non-verbal children who cannot communicate and will never be a functioning member of society.  This is only a percentage of Autism.  Autism is a large and very complex spectrum of disorders.  This is why it is so misunderstood.  Not all treatments work for all children, and not all children have the same symptoms.  While a child will never be cured, many children learn to cope with and overcome their disabilities. 

According to the Centers for Disease Control, there are three different types of ASDs (Autism Spectrum Disorders):

• Autistic Disorder (also called “classic” autism)
  This is what most people think of when hearing the word “autism.”  People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.

• Asperger Syndrome
  People with Asperger syndrome usually have some milder symptoms of autistic disorder.  They might have social challenges and unusual behaviors and interests.  However, they typically do not have problems with language or intellectual disability.

• Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
  People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder.  The symptoms might cause only social and communication challenges.

These are the three main types, but in each category, there is a wide spectrum of the way people are affected.  Their disabilities are considered, severe, moderate, mild, and high functioning.  Someone with classic Autism as described in the first paragraph can be mild or high functioning, but on fall into the category of Aspergers.  Not all mildly Autistic children are catagorized as PDD-NOS. 

The CDC lists the signs and symptoms as such:
ASDs (Autism Spectrum Disorders) begin before the age of 3 and last throughout a person's life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.
A person with an ASD might:

• Not respond to their name by 12 months
• Not point at objects to show interest (point at an airplane flying over) by 14 months
• Not play "pretend" games (pretend to "feed" a doll) by 18 months
• Avoid eye contact and want to be alone
• Have trouble understanding other people's feelings or talking about their own feelings
• Have delayed speech and language skills
• Repeat words or phrases over and over (echolalia)
• Give unrelated answers to questions
• Get upset by minor changes
• Have obsessive interests
• Flap their hands, rock their body, or spin in circles
• Have unusual reactions to the way things sound, smell, taste, look, or feel

The "puzzle" of Autism has so many pieces.  This is why awareness is so important.  This is why understanding is so important.  The Spectrum is so wide and if you think about it, amazing.  It's kinda funny to listen to someone who is interested in learning about Autism.  Their questions are great.  For instance, when Fox8 News came into Amanda's school last Thursday to tape their piece that will be airing next week, one of the questions he asked is "Do all these kids have a special skill?"  Not all Autistics are Savants.  Savants are the ones with the outstanding abilities.  While most Savants are Autistic, not all Autistics are Savants.  Have I confused you more yet?

When Amanda was diagnosed, she was considered to me Moderate to Severely Autistic, falling under the "classic Autism" category as specified by the CDC.  Now, while a child will never be cured of their Autism, many children can and do learn how to overcome and learn to cope with their disabilities.  Amanda's has learned to "suck it up" and deal with it when a loud unexpected noise happens.  She knows how to remove herself from an overstimulating situation and calm down.    On the Autism Spectrum, she is considered high functioning now.  But her future remains uncertain.  I don't know if she'll be able to live on her own.  I don't know what kind of job she's going to be able to handle.  I don't know if I'll ever send her off to prom, or if Dan will ever walk her down the isle.  Her teachers told me not to give up on her.  Believe me I'm not.  We will continue to push her, and teach her.  If we stopped now, what a disservice it would be to her.  It would be unfair to her if we didn't make her reach her full capabilities.  The future is just that....the future.  We'll figure it out one day at a time. 

Our Amanda Moments

I asked you all to post some of your Amanda Moments, so it's only fair that I share some with you too?  Some are down right hilarious, and some will make your jaw drop. 

One of the first ones that comes to mind happened fairly recently.  The only reason this sticks out in my mind is because it led to a meltdown of my very own.  Before the insurance denied any more OT for her, Amanda's therapist had me build a chart for her in the shower.  The shower to this day remains a battle with her.  So anyway, she was really making progress in the shower up to this day.  She was following her chart, but I still had to watch her carefully while she was washing all that hair of hers.  I squirted the shampoo on her hands and told her to wash.  She wasn't in the mood for a shower to begin with, so this was not going to be good from the get go.  She slapped the shampoo on her head and rubbed it a little bit with the palms of her hands, and said she was done.  I told her to take her time and do it again.  Again, just with the palms of her hands.  I told her "Amanda, you know you have to use your fingers and really scrub your hair".  She told me she didn't want to do it.  I told her that was tough and to do it anyway.  We went round and round for probably 5 minutes about this, neither one of us giving us.  Me standing there with the shower curtain open watching her, and her standing in the shower with her arms folded refusing to wash her hair.  Again, I told her to use her fingers.  This little poop head grinned at me, put her hands on top of her head, flat palmed.  Took the index finger on each hand and used those two fingers to rub her head.  The whole time she was grinning at me.  O....M....G!!!!!  It had been a rough day and I was sooooo not in the mood for this.  We finished her bath, and I went into the office and looked up Group Homes for Autistic Kids.  The first one that came up on the search was one in Wichita, Kansas.  Kansas looked good to me.  It was in tornado alley, but so far they have survived, so I looked deeper.  This home sounded great!  They had everything, and I had made up my mind to send her to Wichita.  (It's ok to laugh here).  I asked her if she wanted to go to Wichita and she looked at me like I had lost my mind.  I had.  I was done.  So I called them.  I was disappointed to have to leave a message, but I did.  I came downstairs, grabbed a bottle of wine, and told my mother (Dan was at work), that I was going next door to Josie's.  So off I traipsed across the lawn with my bottle of wine.  I told Josie the story, and she and her daughter promptly laughed at me.  I asked them if they would like any wine, they declined.  So I popped open the bottle and took a long swig straight from the bottle.  Hey I offered.  As I was sitting there, outside on her landscape bricks, drinking out of my bottle, I thought that pizza sounded really good.  So I called Pizza Hut and ordered a pizza.  I had them deliver it next door because that's where I was.  So there I sat with  my bottle of wine, my pizza, and my neighbors laughing hysterically at me.  Hmm...maybe that should be a Jodi moment, not an Amanda moment?

When she was a younger, she used to push a stroller and run, as fast as she could in circles around the dining room table.  We had a large dining room so she had plenty of room to do this, but every once in a while, out ankles would get in her way and she would slam right into one of us.  Our response was "Dammit Amanda".  This happened a lot.  Now remember Amanda's speech when she was younger was restricted to echolalia.  Where she would repeat everything.  You know where this is going, right?  Well, one time, she running in her circles and ran into the wall.  She shook her head, looked down and said "Dammit Amanda".

I was probably about 6 or 7 months pregnant with Zachary for this one.  She had come home from school (pre-Spectrum school) and I was walking her in the house.  It was a Thursday.  I remember this because Pizza night is and always has been Friday night.  Well, she was trying to tell me that she had pizza for lunch.  I thought she was saying she wanted pizza.  I told her that pizza night was tomorrow night.  She repeated what she said, and again I misunderstood her.  She drop kicked me in the stomach and gave me a left hook that would have made Mike Tyson jealous.

She was an escape artist.  Before we got smart and bought locks that hook and put them up on the top of our doors, she got out a few times.  Always when Mom was home alone with her.  One time, my Aunt Jean was up visiting, and Amanda escaped.  She was probably only 3 or 4 at this time.  Mom and Aunt Jean looked everywhere for her, calling her name.  I guess Aunt Jean found her and told her to come home.  Amanda didn't want to come home, picked up a large stick and chased Aunt Jean into the house with it because she was swinging it at her.  Aunt Jean was rightfully scared.

Kevin and Nikki lived in Florida, and we were going to go see them.  Dan, Mom, Jake, Amanda, and me.  We were driving down, and Dan offered to sit in the back seat between the kids.  Well, right before we went down, Amanda had really started to learn to talk.  And boy did she talk.  The entire 18 hours it took us to get to Florida.  I guess she was making up for lost time.  Dan even said, this would be the time she learned how to talk, when we're stuck in the car for 18 hours.

I explained the whole pooping and smearing thing.  We thought we outsmarted her by buying once piece pajamas that she couldn't get into.  Well, Kevin and Nikki had moved back home at this point, and they were watching the kids for us.  Amanda pooped, and evidently got it everywhere again.  Nikki was cleaning her up and she said the whole "Dammit Amanda.  shit.....dammit Amanda".  I guess I must have lost my temper a few times and said that to her.  Nikki said it was really hard not to laugh at her.

If you know my family, you know that Mom wears dentures.  This is all due to Amanda.  Mom wasn't always good at getting "the hug" on her quickly and tightly.  This resulted in a few good head butts and some chipped and broken teeth for Mom.  Hence, the dentures now.  Sorry Mom.

These are just a few.  I'll post them in this section as more come to me.  I hope you were able to see the humor in some of them, as they do make us laugh now.

Insurance Companies Suck Weenus

If you have a child with autism, chances are, you've become an expert at appealing denied insurance claims, just for the decision to ultimately remain the same.  This or that is not covered with a primary diagnosis of Autism.  I honestly don't know how they still get away with this.,  Supposedly Congress passed the Autism Reform Act quite some time ago, but I'm here to tell you, NOTHING has changed.  They can and still do deny everything they possibly can.

The first time I had to deal with insurance companies sucking major weenus was when they cut Amanda's therapy back when she was just a baby.  We started PT and OT three times a week, and it didn't stay that way for too long.  The insurance did not think it was "medically necessary" for her to be seen that often.  Last time I checked, they didn't have anyone come and sit in on her therapies, so how they came to that conclusion,  have no idea.  They were still allowing her to be seen two times a week, so we'd take that, I guess.  This was before I really knew that I had the right to fight them.  It wasn't long before they wanted to cut her back to just once a week, I want to say only a month, maybe.  The therapists got really ticked at that, and I learned the art of appeals.  They really did most of the work in the beginning, and for the most part, they would win, but that didn't last too long.  Long before she was ready, she was ultimately discharged from therapy because she had reached what they call MMI or Maximum Medical Improvement.  Really?  She wasn't even two, and she was at MMI?  Well, that's what they said.

Then came speech therapy.  We went for evaluations and it was recommended that she have speech therapy.  Now a lot of people, including me at that time, do not understand that speech therapy is not only for speaking.  It's for learning how to move your tongue, lips, and swallow.  Everything that has to do with the mouth really.  Well, the people behind the insurance desks said it wasn't medically necessary.  These people don't even have medical degrees and they make these decisions?  I appealed, it was denied.  I did a second level appeal, it was denied.  I did a level three appeal, and it was denied.  You can only appeal a decision three times, and you're done.  It honestly is a hopeless battle.  You never win, at least I never won again Medical Mutual.  Once they make up their minds, that's it.  Final. 

Shortly thereafter I learned about The Bureau for Children with Medical Handicaps.  Now they don't pay for therapies per se, but they will pay for diagnostic testing and such.  This was great.  Even though Amanda had insurance, the policy didn't cover office visits.  We had a TON of office visits.  Neurologists, Endocrinologists, Gastrointerologists, Ophthalmologists, Geneticists, Psychologists, and Medical Mutual did not pay for any of these.  Thank God BCMH did.  They paid for the office visits, and the many, many blood tests, urine tests, fecal tests (ew), MRIs, CAT Scans, genetic testing, and I'm sure I'm forgetting some.  They paid for all of that.  I didn't know that as soon as we got the Autism Diagnosis, that they would drop her.  But they did.  They do not cover any therapies that have to deal with Autism.  Sounds like medical discrimination to me, but it's totally legal.  Believe me, I checked into it.  My hands were tied again.

Amanda was receiving some things through school as I mentioned, but it simply was not enough.  This was before Spectrum.  Her doc recommended more in-depth Occupation Therapy.  Her fine motor skills just are not good.  So I called the insurance company.  At this time, I had had a lot of experience with prior authorization, since I had to get it so often for Dan's patients.  I don't think I mentioned that Dan is a Chiropractor, and I do his billing.  So I call the insurance company armed with direct questions.
Me:  "I'm calling to get prior authorization for my daughter to receive outpatient Occupational Therapy. 
Them:  "Prior Authorization is not required providing you have a doctor's prescription for it".
Me:  "What are the maximum allowed visits per calendar year?
Them:  "Under your policy, therapy is unlimited providing you have a doctor's script"
Me:  "What are the restrictions?"
Them: "No restrictions."
Me: "Is there any DIAGNOSTICALLY RESTRICTIVE CRITERIA that I need to be aware of?"
Them: "No"
Me: "So, in review, providing I have a script from my daughter's pediatrician for outpatient occupational therapy, it will be covered under my policy with no restrictions, diagnostically or othweise, or limits.  Is that correct?" 
Them: "Yes ma'am, that is correct."
Ok, then I covered all my basis.  I wrote down this conversation, the time and date I called, and who I spoke with just to cover my butt.  We went off to OT.  I loved this therapist.  She had great insight and great ideas on how to help Amanda.  We went for about four sessions before I got the denial from the insurance.  YOU'RE KIDDING ME RIGHT??????  Autism is not a covered diagnosis.  What part of diagnostically restricive criteria did they not understand?  I was pissed!  I call the insurance, the told me I had the right to an appeal.  I asked them how long they kept the recordings and they needed to dig into their archives and listen very carefully.  I had the date and time and the person I spoke with.  It'll be real easy to find for them.  They wouldn't do it.  I should have recorded the conversation myself.  Needless to say, I went all the way to a level three appeal.  I continued the therapy sessions while I was appealing.  I had already spent a fortune on treatments for her, so one more bill wouldn't matter.  The answer to the third level appeal was that they would pay for all therapies to date, but no more after that.  I small victory I guess, but I basically wasted my breath on the phone call I made to avoid this whole mess.  I hate insurance companies.

Bottom line is:  If you have a child with Autism, you'll never have any extra money.  If you want them to receive all the help they need, be prepared to pay for it all out of pocket.  Insurance companies deny autism simply because this is a life long disability that will cost them a fortune.  They do it because they can.  They get away with it because no one will stop them.  Insurance companies suck weenus.

The Behaviors

First of all, I'm going to start off by saying that Amanda is not a brat.  She is not out of control, and I do discipline her.  She is autistic.  Her behaviors are strange to those who don't understand autism, but to us, they're just our Amanda.

The Meltdowns
This is the big one, so I'll start with it.  This is the behavior that most people see as the most bothersome. This is the one that labels our children as out of control brats, and us a lousy parents.  It's a fact.  Autistic children have meltdowns.  They can be triggered by just the smallest thing.  To us, it's the smallest thing, to them, it's HUGE!  How would you feel if what you were trying to communicate was not being understood by the person you were communicating with.  Actually, if you think back, we have all experienced this.  Trying to talk to that hard-headed person who just does not understand you.  It's very frustrating!  To us, this happens once in a while.  To an autistic child, it happens every day. 
Meltdown triggers can come on quickly and mysteriously.  Before I understood sensory issues, I never understood why Amanda would have a meltdown any time we went to the mall, or to a larger department store.  For her, it was the large space.  It was just too much for her to comprehend, and the large space, with the bright lights, and all the people, was too much.  So she'd meltdown.   Right there in the mall, the store, the parking lot, wherever she had hit her limit.  She could scream, cry, hit, kick, bite, and throw herself down.  Once you're around it enough, you can definitely tell the difference between a true autistic meltdown and a temper tantrum.  I have four kids, so I've seen  a lot of both.
I never let the possibility of a meltdown stop us from going out into public, or introducing Amanda to new things.  She was autistic, and the world was not going to change.  The world also needed to know that she could not change either.  But she could learn to adapt.  The only way to teach them how to adapt is to throw them into the situations.  So I did.  It was hard.  It sucked.  It was embarrassing, but we did it.  One time, she was probably about 4 and decided JC Penney looked like a great place for a meltdown, so she had one.  Let me address that what I was taught to calm her down can look really really bad.  We call it "the hug".  You get behind them, take their arms, cross them in front of their body, hold them in that position as tight as you can, and get them to the ground if they haven't already thrown themselves there.  So at Penney's she was in the midst of a meltdown, and I was attempting to get the hug around her.  Some old bat walks by and murmured that I needed to control my child.  It had been a trying day, and I had had enough.  I looked at her and said "Do you have an autistic child?  No, I didn't think so.  So until you have to deal with one, then and only then can you form an opinion on what I should do, and you'll know enough to keep your mouth shut!"  She turned white as a ghost and promptly walked away.  I thought it was funny, and I felt good.  Dan looks at me and just says "Jodi".  I get that a lot from him.
One other time, I was with Amanda at a store.  She wanted a balloon.  I was going to get her a balloon, but they were by the cash register and we were in line and I simply could not reach one yet.  Patience is not a virtue for autistic children.  She wanted one now and screamed.  The cashier actually stopped what she was ringing up and stared at me.  This could be fun.  I told her I'd get one as soon as I could reach one.  She screamed again.  The cashier stopped AGAIN and looked at me.  You know, if she would have just kept ringing up the items, I would have gotten to the balloon and Amanda would not have screamed again.  And I told her that when I got to the register.  Idiot.

Routines
In an autistic mind, things are much simpler when done the same way, at the same time, every day.  This is not always realistic in my house, so Amanda had to adapt to the fact that although the routine through the week is the same, especially in the morning, the weekends are free for alls.  This works for us.  I'm not implying it will work for everyone.  When we would get ready to go out, I would tell her where we were going, what we were going to do when we got there, and about how long we'd be gone.  If I got in the car and noticed that I needed gas, and that was not in the plan and we stopped at a gas station, a meltdown would ensue.  Her weekly routine is now and has been for years, up at 7:20, get dressed, breakfast of Rice Crispies, a glass of milk, brush her teeth, comb her hair, get her shoes on, put on her jacket, and wait for the van.  In that order.  Same thing.  Every day.  She does not like it when the van runs a little early, or a little late, but she has adapted.  She gets home around 3:10, does her homework.  She has free time for a couple hours that she does whatever she wants to do, which is usually watching YouTube on the computer.  She'll go back and forth between The Annoying Orange and music.  We have dinner, and right after dinner is her shower.  Bed time is between 8:30 and 9 depending on how tired she is.  When she was younger the routines were much stricter.  Now that she's older, it is much easier.

Obsessions
Obsessions can be of anything they want it to be.  No rhyme or reason.  They'll find something to fixate on and do it.  When Amanda was a toddler, her obsessions were a pop-top.  You know the things that are in a plastic dome that you push the top down and the balls inside go around.  She would play with that forever.  TV shows such as Rugrats, Little Bear were always on hand for her to watch.  She loved numbers, and for a while, any shirt she had, had to have a number on it.  Music has always been and still is a strong obsession.  She loves music.  For the most part, it's very soothing to her.  We've gone through High School Musical, Blues Clues, and the current one is The Annoying Orange.  That's a fun one.  LOL

Stemming
Self stimulation, or stemming is common among most autistic kids.  Happy hands, rocking, clapping, hands going into her mouth, constantly stroking her hair, and twisting her hair.  These are Amanda's stems.  The most often is the rocking.  I found out the rocking is related to her sensory issues.  When she's standing up she's rocking as to reassure herself the floor is beneath her.  If she doesn't do that, she can't feel it.  Same thing when she's sitting.

Sensory
Senses can be overloaded or understimulated.  Amanda's sensory issues are primarily  her hearing.  She can hear a pin drop!  Loud noises are terrifying to her.  Fire drills and tornado drills horrify her.  Sometimes in the shower, if the pressure drops the shower head will squeak.  This drives her crazy.  Her pain tolerance is extremely high.  Scary high.  She got stung twice by a yellow jacket and she plucked the bee off of her and just said ouch.  Big places were once a huge issue for her.  Not so much anymore.  We noticed that Amanda would always clean her plate, and sometimes get sick after eating.  She simply did not know when she was full, so we had to teach her portion control.  The reason she was so delayed in potty training was that the feeling you have when you have to go was so minute to her that she just didn't know she had to go until it was too late.  This caused trouble with consitpation as well.  I had to use enemas with her a lot just to get her to go.  That was fun.

Motor skill delays
As I mentioned earlier, Amanda has issues with milestones.  Her fine and gross motor skills are functional, but awkward.  Her handwriting is awful because of her fine motor skills.  All her bottoms are elastic waisted because buttons and zippers prove to be so difficult for her. She can brush her teeth well, but that took tons of practice.  Her walking is very heavy footed, and when she runs, her gait is very wide and awkward.  For a long time, she could not cross midline.  This means that taking her right hand and moving it to the left side of her body was very difficult.  I notice that she still won't do it unless absolutely necessary like when putting on her shoes.

I'm sure I've forgotten some, and if they come to me later I will add them.  Please keep in mind that these are Amanda's experiences.  Autism is a spectrum, and no two people are affected the same way.  This is Amanda's autism and I'm sure does not apply to everyone out there.

Boot Camp for Autism

This is what I have affectionately nick-named Amanda's new school.  They are tough!  Not that they didn't warn me on the intake interview, but I sure didn't expect this.  When Christie and Cheryl came to my house that day, after many years of failed treatments, a school system that didn't care, and me about pulling my hair out, they gave me something that I hadn't felt in a really long time.  Hope.  They came in and interviewed us.  Both Amanda and Me.  It was neat.  I showed them her room, explained our routines, Amanda's habits and routines, and her educational history.  If you could even call it a history.  They asked me what I wanted for Amanda.  I told them "a normal child".  They understood, and we put together a game plan.

They were with me step by step as we tried to get Lorain to release Amanda.  Even though she is no longer going to their schools, we still have to go through them.  Can you believe they still get paid $5000.00 by the state even though they're not educating her?  That's how messed up the school system is.  They'll still get a check for her even though they never did anything.  Idiots.  But I digress.

Amanda started with Spectrum school the beginning of her fourth grade year.  She hated it.  She fought me, she wanted to stay home from school, when she was at school she cried.  She didn't listen to the teachers, when she came home she was very combative with me.  I was warned this could happen.  They told me right out that their school was a no holds barred type of school.  The didn't pull punches, and their goal was to teach these kids, whether they liked it or not.  Their approach was not for everyone.  I knew that going in, and I was starting to second guess myself.  I knew everything was new, and it was going to be hard.  It's hard enough for a "typical" child to go to a new school, I know this from my upbringing.  Let alone a child with Autism to be taken out of their comfortable elements, and pushed way beyond their boundaries.

I was in very close contact with her teachers and with Cheryl and Christie for those first several weeks.  The reassured her, they reassured me, they told me step by step what Amanda's day was and how they handled her meltdowns while she was there.  I started to feel more comfortable.  I knew in my heart this was what we needed to do.  Amanda, on the other hand many not have agreed, but we kept on keeping on.  You see, their take on Autism was pretty much the same as mine.  "Suck it up kids, the world isn't going to change for you, you have to adapt".  I never let Amanda's autism stop us from trying to lead a somewhat normal life.  I have always pushed her into uncomfortable situations, and we dealt with it.  If she was going to be a functioning adult, she's got to learn to deal with it.  They agreed.  They helped her deal.  She started to come around.

By Christmas she really was into her routine.  She started to enjoy school.  Thank God!  They had her on reading programs to try and catch her up, as well as math programs.  Now think about that for a minute.  They had her on programs to catch her up to grade level in two subjects she was mainstreamed in during kindergarten until the budget cuts.  Is there something wrong with that picture?  I would say so.  She was no longer crying for me, and opening up to the staff and other students.  She actually started showing a silly side.  Please keep in mind that although she was academically in fourth grade, she had been held back for two years in school.  Once in preschool and once in kindergarten, so she should be in sixth grade.  By the end of the school year, we had found a new educational home for Amanda, and we were very happy.  She was now reading at a third grade level, starting a fourth grade level.  In just one school year, they had increased her reading skills by a year and a half.

Shortly after starting her fifth grade year, she developed her first crush.  On her teacher.  Now granted, he is a young, athletic looking, attractive man, and despite all the fighting he and Amanda did their first year together, she was in love with her teacher.  It was cute.  And quite annoying.  So annoying that we had to make his name a bad word in our house because that's all she talked about.  It was funny.  Socially she really started to grow.  They noticed that at school, she was very much the mother hen.  She would take care of the younger kids.  She was also developing quite an outgoing personality and becoming the class clown.  Yep.  My at one time non-verbal autistic daughter who Lorain City Schools said had plateaued at third grade had grown into a nurturing young lady, and class clown.  I was ecstatic and infuriated all at the same time.  Ecstatic for all that Amanda had learned in such a relatively short time and infuriated by the realization that she could have been learning this all along and the school system wouldn't teach her.  By sixth grade, she was reading at grade level.  When she took the standardized test, it showed her reading at an accelerated level!  Accelerated!  I wanted to take that report and shove it in the faces of the board members of Lorain City schools.  I didn't.  I sooooo wanted to, but I didn't.  I still may one day.  :)

Conferences and IEP meetings are now something I look forward to.  They are no longer concentrated on what she can't do, but on what she's accomplished and how can we push her further.  Her teachers now say that for an Autistic child, she is one outgoing gal.  She is very personable, loves everyone, and yes, she is still class clown.  All of her teachers have told me that there are times she's being so funny that they have to leave the room, compose theirselves so they don't laugh in front of her, then come back in an try to teach again aftert telling her she is not acting appropriately.  What a difference!  I'd rather have a class clown on my hands than the non-verbal ball of nerves she used to be! She is very outspoken and shoots right from the hip.  It's not in her to lie, so she tells you exactly what's on her mind.  Just the other day I got a report home from school that a student was bothering the class, and Amanda took it upon herself to tell him to shut the hell up.  I did speak to her about that, and how she should not speak to people like that, but inside, I'm laughing my butt off!  She's in eighth grade now, and I soon will be going in to her IEP meeting for goals for high school.  We are going to start concentrating more on independent living skills, and jobs.  Yep.  She'll get a job!  We've come a long way baby, and there is still so much further to go!

Early Internevtion and Education

Early intervention is key.  That's the mantra for parents with autistic kids, and this is so true.  Amanda's doctor gave us the names of the people we needed to contact through the school to get things going.  So we did.  The early intervention specialist came to the house for an intake interview to see if Amanda qualified for services.  No doubt she did.  Next was on to the Multi-factored evaluation.  This is a series of tests and evaluations done in order to distinguish the types of services the child qualifies for.  Needless to say, I believe Amanda qualified for just about everything.  She would be in a multi-handicapped preschool classroom.  She would receive PT, OT, and speech therapy.  They would work on academics.  They would address her sensory issues and socialization skills.  Her IEP (individualized education program) was so detailed, and I must say that I was pretty impressed.  So in the fall of 1999, she started her school career.

First was the preschool program.  The teacher she had was great!  But when she started school, this really brought to light all the things that she could not do.  This really saddened me.  I knew she had autism, and I knew she was different, but when placed in a classroom setting, and all the things associated with it, she really had problems.  Just getting her into the classroom was difficult.  The school was so big, and so overwhelming for her, just to transition her into the building was sensory overload.  So was the classroom.  Other children in the classroom, all the lights, sounds, and everything she wasn't used to.  She did absolutely nothing independently for a while.  This is where we first learned of the picture book.  The teacher took pictures of absolutely everything Amanda did, each stations, each of the classrooms she visited, the gym, etc.  When it was coming the time to transition to different activities or different classrooms, the teacher would show her the picture of where she was going next to get her ready for the transition.  To my surprise, this really helped.  To be honest, a lot of the things they did with her, I didn't understand, and I thought was pretty strange.  I didn't understand why every little thing had to be so detailed.  There was still so much to learn about this disorder called autism.  I was just beginning to understand the need for structure and routines.  Once I understood this, and started implementing just some of the things we learned at home, we got into our routines, and Amanda seemed to relax.  If not just a little. 

After preschool typically comes kindergarten.  Not for Amanda.  It was another year of preschool for her.  I was heartbroken that she was not ready to move on.  It was an ego blow.  The realization of her handicaps was very disheartening.  We had another IEP meeting at the end of her first year, and she had barely reached any of her goals.  She still wasn't really talking, aside from the echolalia, and transitions were still very difficult for her.  She cried at school a lot.  Pretty much, this meeting centered around the things she could NOT do.  Simply because there just wasn't much she could do.  The teachers were great in explaining this to me, and assured me this was typical.  Typical.  As if anything with autism is "typical".

Well, her second year came and went pretty uneventfully.  The same things were worked on, and she started to make some small strides.  At the end of the year, she could move on to kindergarten.  Another IEP meeting, more goals reviewed, and more set for her.  She would start kindergarten in the fall.

Another school, a new building, new teachers, new aides, and a new routine to get used to.  I didn't know how she would handle it.  They prepared the picture book for her and her kindergarten teacher and aide would take her from here.  Now I have to say that I was pretty excited about this year.  The whole reason we lived in this school district, despite it's many many many flaws, was for the Autism program they had.  Amanda's kindergarten teacher and her aide were the pioneers of this program.  It takes a very special person to work with a classroom full of these children, and these two women did it whole hearted.  When she started kindergarten despite the small step she had made in preschool, she still was not communicating.  She was still pretty  much just exhibiting echolalia.  She still was potty trained.  She still had very high anxiety and sensory issues.  Each day, her teacher sent home a notebook describing their day and how Amanda handled each situation.  One of the main focuses was the potty training.  She was almost 6 years old, and something had to be done.  Well, after a few months, this teacher had my non-verbal autistic daughter call me on the phone and tell me she went pee pee on the big girl potty!  OMG!  What a feeling!  She was going potty.  Once she got used to it, that was it.  After all those years of fighting and trying, she got it!  I think it was the light switch again.  Just like with her walking, she just GOT it.

During one of the conferences, her teacher told me that she felt Amanda was ready for some typical classroom settings.  Huh?  Typical classroom?  Turns out she was pretty good at math, and she enjoyed reading.  She wanted to see how she would do with the itinerants as well in a typical classroom.  These included gym, music, and art.  Ok!  Let's go for it!  So it was written into her IEP and Amanda was going to her typical kindergarten class, with her aide for these classes.  And she was flourishing!  She really seemed to be enjoying it too.    At the end of the year, we decided that although she was doing well, she really wasn't ready to move on to the first grade.  Even though she would still have the same teacher through second grade in this classroom setting, her mainstream classes would remain in kindergarten.  At this point, I was ecstatic that she was mainstreamed and decided that holding her back so she could really absorb it was the best thing for her.

During her kindergarten year, we learned of budget cuts that had to be made through the school system.  The one place they were looking to cut was their special education programs.  They wanted to increase the size of the classrooms, decreased the number of teachers, aides, and therapists.  This infuriated me!  Did they not understand how important one on one interaction with these students was?  Did they not understand that the therapies some children got in school was the only therapies they received because the insurance companies were so awful.  They didn't understand, and they didn't care.  Amanda's teacher held several meeting informing us parent what were within out legal rights, and what we could do.  Together we attending board meeting, town meetings, voiced our opinions, did the best we could.  They assured us they were listening.  They lied.  In the end, just like insurance companies, money rules everything.  Who cares how many teachers there were, as long as they had a "program" they were legal.  It was a bunch of BS!  Budgets were cut, jobs were lost, and the children were to suffer their next year.

Amanda's teacher was not going to let that happen to her students tho.  She continued with the current IEP, and did not leave anything out that she thought these kids needed.  You see, supposedly, if it's in the IEP, but law, the school has to do it.  Yes, Amanda was still mainstreamed, but she didn't have her aide anymore.  Which I thought was fine.  She was still going into the typical classrooms.  She wasn't getting as many therapies as she was last year, but she was still getting therapies.  I wasn't happy, but what could you do?  Her teacher understood, but her hand were tied.  Budget cuts were ruling the system, and they just don't care.  They don't listen to their parents.  As long as the high salaried jobs and bonus continued, the school board was happy.  At the end of this school year, her teacher and aide were going to retire.  I was so sad to hear this!  She would still see them over the summers through her camp which I will explain in a later post.  Briefly, Camp I.D.E.A.S is a Summer camp in the month of July that her teacher and aide started and runs as a non-profit organization.  They work on the children's IEP goals set, and socialize them in a day camp type setting.  Ok.

First grade came.  I hated her teacher.  I'm convinced she hated me.  All of a sudden, mainstreaming Amanda was no  longer a good idea.  Even though she'd been doing it successfully for two years.  Truth is, she didn't have and aide to take her there anymore, and the teacher didn't want to deal with a special needs student.  I fought this.  I fought so much bullshit they were trying to pull.  The school system that had help her for four years, now didn't seem to care.  They used to take field trips to "trick" these kids into fun therapy,.  Roller skating, swimming, bowling.  The parents paid for these field trips, but the new teacher didn't want to bother.  When I complained, I was asked if it was in the IEP.  Really?  They're field trips you idiot.  They're good for the kids.  It helps them!  Besides, it wouldn't matter if it was in the IEP, you're not doing with the IEP states anyway!  And yes, I said that.  pretty much verbatim.  My temper flared so much that school year!  I was happy to say that teacher stepped down.  I would like to hope I had something to do with it, but I think I'm just stroking my ego a little bit.

I hate to say that her second and third grade years were not any better.  Her teacher who Amanda would call Betty Boop, lol was a wonderful person.  She had a kind heart and was wonderful with Amanda.  But with the budgets still getting cut, Amanda was simply not receiving the help she needed.  She was plateauing and so young in life that was NOT acceptable to me.  I had conferences, spoke with the school psychologist, spoke with the principal, but got nowhere.  Absolutely nowhere!  Like I said I really liked this one teacher, and she loved Amanda.  Almost too much.  She wouldn't push her.  She didn't like to see her upset.  I say PUSH her!  If you don't push her, she won't learn.  What do I know?  I'm just a Mom, right?

It was by accident that i learned of the Ohio Autism Scholarship.  MacKenzie was going to start kindergarten at a private school, and we had learned about the Ed Choice scholarship for her.  Since we lived in such a piss poor school system, the state would pay for your child to go to a private school.  We had always planned on sending Mackenzie there, that's where Jake went, but to not have to pay for it was a blessing.  Amada's therapies and treatment were costing us so much, and we never qualify for any help, so this was a blessing.  A blessing in disguise.  While I was researching the Ed Choice (as you can probably tell, I'm huge on research), I came across the Autism Scholarship.  Autism scholarship?  What's this?  They'll pay for private schooling if your child has autism?  They'll pay for therapies and such they receive in school?  They're not affected by budget cuts?  Interesting.  I called about it.  Gee...there's a school right here.  Right in my back yard. 

Cheryl and Christie came over for the intake interview.  They were wonderful.  The therapies, life skill training, education, in home services, consulting, counseling.  They did EVERYTHING!  They insisted on keeping the student to teacher ratio very small.  I thought it was too good to be true.  I went for it!  We had to get her current school system to release her.  This took a lot of time, and fired me up.  To top it off, THEY KNOW ABOUT THIS PROGRAM AND SCHOLARSHIP AND CHOOSE NOT TO TELL THE PARENTS!!!!  I went OFF!!!  I said "How DARE you withhold this information from parents with autistic children!  How DARE you want to keep these children in your schools just for the money?  How could they with a clean conscious keep this to themselves?"  All I got in response was Uh, uh, uh..Yeah..Uh uh uh uh shove it!

So Amanda starts her new school.  She hated it.  She was used to the coddling and not having to try.  See can do so much if she's taught correctly.  You just have to push her, and they did.  They pushed her....and she started to grow...

"Amanda Moments"

Since I started this yesterday, a few people messaged me and have shared with me special memories they have of Amanda.  I'll call these "Amanda Moments".

If any of you have any times that you can remember where Amanda has done something funny, amazing, scary, or something that simply touched your heart, please share it with us in the comments section.  I look forward to reading your comments and memories.  :-)

Thanks!

It's Personal

So far, as I've been telling the story, I've concentrated on the observations we made with Amanda.  I haven't touched on the personal aspects.  I promised an open and honest blog so here it goes.  I apologize to anyone reading this if anything I say in this post upsets you, embarrasses you, or offends you.  But it's part of the story.

My personal struggles are not easy for me to talk about.  I'm a happy go lucky person and don't like to speak of my problems, or my struggles.  I've built walls around my heart as a self defense mechanism.  I do not openly trust anyone, and when I first meet you, before I know you, I don't let you in.  Even after knowing me for a while, chances are, you are still not 100% in.  For the past 18 years, life has been about my children, and for the past 15 years, a big chunk of my life has been about learning about and dealing with autism.  Talking about what was going on with me is not fun, but I'm going to  lay it all out. 

I mentioned being separated in an earlier post.  From the time I was three months pregnant until Amanda was born I was a single expectant mother.  It was me, my Mom, and Jake.  I received no child support, and for a long duration of my pregnancy I was unable to work.  We lived off Mom's small retirement benefit from my Dad's army retirement.  Dad had passed away not even a year ago, and Mom was not old enough to draw her social security benefits.  We managed, but the stress could not have been good on Amanda during the pregnancy.  I blame myself for that.  I wonder "what if" I hadn't been so stressed while I was pregnant.  Would I still have gone into pre-term labor?  Would I have needed all those medications during the pregnancy?  Did those medications affect her?  Did I cause this?  I don't know, and I still ask myself those questions.  I always will.  After Amanda was born, her father wanted to come home, and I let him.  I thought it was the right thing to do.  I had two children, and they deserved a family. 

When things got questionable about Amanda's development, Mom and I were the ones who took care of it.  I took her to therapy alone, and I did her home therapy alone.  Although I was married, and my mom was around, I felt very alone in all of this.  After all, I was the one teaching this child how to function.  It was "too hard" for her father to go to therapy.  Ford moved us to Louisville, KY.  I had already made my mind up for divorce, but allowed myself to be talked into moving.  A fresh start.  After living in Kentucky for six months, I finally decided that I loved myself and my kids enough to leave this unhealthy relationship.  So I did.  I moved back to Ohio with my two children, on the words of my ex-husband "Good luck finding someone to take care of  you and your fucking retarded daughter".  Sorry about the language, but hey, I warned you.

So I'm a divorced mother of a 5 year old boy, and 3 year old Autistic daughter.  Life was great (enter sarcasm here).  I had a chip on my shoulder the size of the Rock of Gibralter.  Again, it was Mom, Jake, me, and Amanda.  Thank God for Mom.  During this time, she was my rock.  I still don't think she knows this.  As I mentioned, I'm happy go lucky, and won't let you in.  So, new beginnings, and trying to figure out this puzzle we call Autism.  I dove into research.  I researched many many hours a day.  I concentrated on my kids, work, and research.  I would get up, get Jake to school, go to work till 7 PM, come home, have some family time, tuck the kids into bed, and research.  I probably was not a likable person.  I didn't care. I had my support group of some great friends and Mom.  That's all I needed.

Then I met Dan.  Poor guy.  LOL.  When I met him, I honestly thought that the only thing men were good for was sucking up my oxygen if I was standing next to them.  I had no place in my heart or in my life for a man. I had built a wall so close around my soul, that no one could get in, and I honestly could not see out.  Please don't get me wrong, this wall was not only from my first marriage.  It was from the scowls from people for something 'strange" Amanda would do while we were out.  It was from nasty remarks, sideways glances, and from feeling so alone in what was now my Autistic world.  Inside my wall was me, my kids, and Autism.  There simply wasn't room for anyone else.  Except Dan.

We started hanging out as friends, and I actually had some fun!  I had forgotten what that was.  See, between working and appointments, there was no room for fun.  Dan knew what I was going through, yet he didn't look at me like I was from another planet.  More importantly, he didn't look at Amanda like that.   My wall started to crumble a little, and that scared me to death.  It would crumble, and I would promptly rebuild it.  I could tell I was falling in love with him, and I thought he felt the same way about me.  So I had to have a talk with him and nip this in the bud.  After all, he was sucking up my oxygen, remember.  So I told him "Dan, I don't know where you expect this relationship to go.  But if your future includes getting married, and kids of your own, I am not the girl for you."  Do you know what he said???  He simply said "Ok".  OK?? Really?  Who says that after such an intense statement from me? O.K??????

Ok....so he hung around.  He started going to appointments with me for Amanda.  Someone was actually wanting to learn about this horrible disorder that had taken over my life.  He not only wanted to learn about it, but he started taking some of the burden of it.  He listened, he learned, he took it all in.  He went to MFE meetings, IEP meetings, doctor's appointments.  He obviously loved this little girl too.  Mom and I finally had some understanding, and some help.  It felt good, and I loved it.  Yes, I loved it.  And I loved him.  More importantly, he loved Jake and Amanda. 

One night, we had put the kids to bed and Mom, Dan, and I were sitting downstairs.  I heard Amanda upstairs.  She wasn't asleep.  We had to put a gate up at her door so she wouldn't get out of the house at night.  You see, we had a little escape artist.  This is typical with Autism.  I have some funny stories about that, but I digress......Amanda was awake.  I went up to check on her and Dan came with me.  What I saw mortified and embarrassed me more than I have ever been embarrassed before.  She pooped.  Not only did she poop, she took it out of her diaper, and smeared it EVERYWHERE!  Her bed, her walls, her floor, her hair, her face, the door knob....EVERYWHERE.  I thought Dan was going to high tail it out of there.  He didn't.  I took Amanda in for a bath, and he and Mom cleaned up the room.  We laugh about that now.  Can you believe it?  We LAUGH about that now.

These personal experiences are not easy for me to write about, but they are part of this open and honest look at our world with Autism.  In 2001, Dan and I got married.  Amanda was our flower girl.  My quest for a cure for Autism continues, but now I have a team.  Yeah, remember when I said, no marriage, no children of your own to Dan?  Enter MacKenzie in 2002 and Zachary in 2005.  Big transitions are not easy for Autistic kids, and this was not different for Amanda..

It's Autism....

The very first time a health care professional uttered the word Autism to us, Amanda was just 3 years old.  It was September, 1998, and we had just moved from Lorain to Louisville, Ky.  I had taken Jake and Amanda into their new pediatrician.  Jake of course was fine, happy, and healthy.  This new doctor was very interested in Amanda's history, reviewed all her notes, and stated that she wanted to test her further.  She was very compassionate and resourceful and set us up for an evaluation. 

We met with many different therapists.  We had physical therapists, occupational therapists, speech therapists, behavioral therapists, just to name a few.  We met as a group, and throughout the course of several weeks, we met one on one.  PT, OT, and Speech Therapy was recommended, and denied by the insurance.  I was given information about possible education avenues for her.  In March of 1999, I decided there was nothing at all in Louisville for me, so I moved back home.  One good thing came out of my short time in Kentucky tho, I was armed with tons of information about Autism and the opportunities for Amanda.

I quickly made an appointment with Amanda's old pediatrician.  He looked everything over, and agreed.  Amanda was Autistic.  I still didn't want to believe this was happening!  But the signs were evident.  She was not talking, she didn't make eye contact, she exhibited several "strange" behaviors and obsessions.  Her fine and gross motor skills, although highly functional were delayed and unsteady.  I'll talk more about behaviors in a later post.  Her doctor recommended taking Amanda into the head Neurologist for Children at Rainbow Babies and Children's hospital.  This man, who I will not name on here was supposed to be the Autism guru of Cleveland, and Amanda's doc pulled some strings and called in a personal favor in order to get Amanda in to see him right away.  I guess there was a 6 months waiting list for this guy.

So off we go on our first of many trips to The Cleveland Clinic.  I will say this man is great with children.  He gets down to their level, and can communicate with them.  His problem is communicating with the parents.  He noticed her gait, her awkward movements, and obsessions with things in his office.  Her fear of loud noises, and other little things.  He asked if she had ever been seen by an eye doctor.  She had been, but the doc I took her to was ill equipped to handle children like her and said he couldn't get a prescription on her, and as far as he could tell, her eyesight was fine.   Well, we were sent off to see a Rainbow doc.  I was amazed at what this eye doctor could do.  All the neat gadgets and the way he examined her.  What he told me about made me fall off my chair.  This poor little girl was so nearsighted, she's probably never even seen what I looked like clearly.  Her prescription was -10.50 in the left eye, and -12.50 in the right eye.  My prescription is a -8.50, and I know I can't see.  So I asked my Mom to take her right out to Lenscrafters and an hour later she had glasses.  My mom took her for me so I could get back to work, and she said that when Amanda put them on, she actually said "Wow".

Yes, she said "Wow".  I need to clarify.  when I say Amanda was not talking, I should say that she was not communicating.  She could say words, but she was exhibiting echolalia.  That means that she will repeat phrases she hears, but not partake in usual conversation.  The only words we really ever heard her say, was things she would repeat from her favorite cartoon, which at the time was Rugrats.

So now she could see.  Her gait was much better, and her movements were not as awkward.  We went for our follow up appointment with the grand poo-bah of neurologists, and he tell me that she is not Autistic.  WHAT???  Just because she moves better because she can see, she's NOT autistic?  He diagnosed her with speech delay, anxiety, developmental delay, and a few other behavioral issues.  He sent us off to see a Behavioral Therapist.  To be honest, after a couple sessions with her,  I thought it was a bunch of BS and stopped going.  In my heart, I knew this was not the right avenue for Amanda.  If you put all the diagnoses together that he had given her....THAT'S AUTISM!  Her pediatrician agreed, and the new neurologist I took her to agreed, and the school psychologist I took her to for her Multi-Factored Evaluation Agreed.

We had MRIs, CAT scans, evaluation after evaluation, therapy sessions, and genetic testing.  All scans and testing came back normal.  Her chromosomes were fine, and there is no blood test.  Autism is diagnosed by speech delays, lack of social skills, cognitive function, motor skills, obsessions, behaviors, sensory issues, so many things are grouped under the Autism umbrella.  For this one doctor to discount so many other things is amazing. 

So we have the definitive diagnosis, where do we go from here?  Her pediatrician led me on the pathway of Early Intervention, and so many life lessons for all of us to learn.