Tuesday, July 31, 2012

Keira and Aspergers

This has been a while coming now.  I knew I wanted to one day put into words exactly how I felt and what thoughts have gone through my head since finding out about Keira having Aspergers.  Ya, know, we knew there was something unique and special about her the moment she was born.  Even the Dr.’s sensed something.  She cried for over an hour straight non stop, I still to this day remember the Dr.’s words “oh, your in trouble with this one.”  From that day, there have been little things here and there, little signs.  I remember when she was around the age of turning 1, the biggest thing they said about Keira was how content of a child she was.  I could sit her down on a blanket and she would just sit there and be content for the longest time.  It wasn’t until now I realized why she was so content on that blanket, she was in her own little world, thats what she wanted.  We knew she would be stubborn.  When it came time to feed her, her first foods, what an ordeal that turned out to be.  She REFUSED to try it, I mean mouth clamped closed, would not give in for anything.  The Pediatrician, told us to just be consistent and she would get used to it.  That is when the battle began...6 weeks, it took us.  6 weeks of consistently giving her that baby cereal every single day, twice a day before she would willingly take it.  When it came time for her first taste of fruits and vegetables it was the same thing!  Then, with walking, I didn’t think she was going to walk almost.  She finally did, she was 19 months old before she did.  When she turned 2 my content child turned into the spawn of Satan!  I mean, I know terrible two’s.  Nyah, the drama queen had the tantrum down to an art at the age of 2.  But, with Keira, I had never in my life heard the loud of a death rattling scream that would come out of her mouth!  It’s interesting to me now, that I know more about her, that at the age of 2, when they are starting to talk and to “communicate” with the people around them, is when her frustration had come out.  Then came potty training.  Ugh!  I still have nightmares about this experience.  You can actually go further back on my blog to the whole story of the potty training tale of this child!  I, waited until after she was 3 to start potty training her.  We tried EVERYTHING under the sun to get this child potty trained, nothing worked, half of it backfired.  You name it we tried it, the sticker charts, treats, potty training the doll, running around naked, letting her clean herself up, keeping a potty chair in every room, keeping them on the potty chair for an extended period.  It was awful, I honestly thought at the time she would be graduating from high school in diapers, and I knew it wouldn’t phase her, she would not care.  We eventually had a break through and she did get potty trained after a year of trying everything.  Yes, I just said we did this for a year of consistently trying daily.  By the time she was preschool age, we knew, we KNEW, something was...different for lack of a better word.  We could never really assess what she knew.  Because she would just not answer the question, or she would answer the question wrong, and we would assume she just didn’t know the color, shape, number or whatever we were trying.  Only to our dismay later, when we would hear her talking about whatever thing we had been asking about.  Her attention span, was extremely short, even for someone her age.  One day, I was talking to my mom about her and my mom mentioned something about ADHD and Keira.  I remember thinking, “hmm, it’s something to think about.”  I didn’t really know anything about it, so I started googling it.  She did seem to fit in this category.  So at that time I was thinking okay, well I think we know what the issue is.  I thought it was ADHD with Anxiety, because even at preschool age the meltdowns and tantrums were still going on, on a regular basis, when normally a child has outgrown this for the most part.  I took her to a Counciling center, I told them our concerns and what we were thinking.  I remember, one of the things, we were concerned with, was that we couldn’t have a real conversation with her, she would only talk about what she wanted to talk about.  The counselor mentioned her need to “control” the conversation, he thought she was very unique and was excited to work with her.  They wanted to have her tested for her development.  At the time she was 4 and her developmental level was that of a 3 year old.  Well, we found out a little later that our insurance didn’t cover most of this and it got very expensive.  We decided that, for the time being we would educate ourselves on this and take it one year at a time.  So, we decided to hold her back a year for Kindergarten, her birthday was in August, so it was late in the year anyway.  We sent her to Kindergarten the next year.  Boy, was that a transition.  We knew, from experience that she does not do well with transitions.  She had her fare share of bad days and many, many meltdowns at school over different things.  Luckily for us her teacher was great with her, and very willing to work with her and make accommodations where it was needed.  We had told him about us thinking she may have ADHD but were not sure.  He made a comment once about how he wasn’t sure that was the case, because there were things she would sit still for, where with ADHD kids, they can’t sit still even if it’s something they love.  The year ended and it was on to summer.  Half way through summer break, I started worrying about sending her to first grade, she doesn’t do well with the transitions and this would be a pretty big one.  I was googling things about this, when, I came across a website called “Ask the Expert” or something to that effect.  You could ask this social worker/psychologist one question about your child for free and then you go from there basically.  I thought, well it can’t do any harm, right?  I told them a bit about Keira and her issues she had in Kindergarten and that I was concerned for her going into 1st grade and basically how can we make it go okay for her.  I also told them about the possible ADHD and Anxiety.  I got my answer...the turning point for us with her.  This woman told us, that from what it sounds like she would guess more along the lines of Autism, specifically Aspergers.  She outlined the reasons why, based on what we had told her about Keira.  She of course said, this is just something to look at and in no way a diagnosis.  I remember my first real experience with Autism.  I was babysitting kids at my house and I babysat for this woman, that had a child with Autism.  I watched the younger brother for her, while she took the one with Autism to his school and what not.  Now, he was severely Autistic.  I remember thinking how hard that would be as a parent, to deal with this.  It almost seemed as though he had developed to like 18 months old and then stopped mentally.  I remember assuming that was how all kids with Autism would be like.  I also, remember being worried about any of my own kids ever having this.  Now, at the time Nyah was still a baby.  I would watch my kids develop and when they passed the 18 month mark and went beyond developmentally I was relieved.  It’s funny how little of knowledge we can honestly have about a subject, when we assume we know based on a one experience.  How naive that was for me to think.  So, when I was told to look into Autism, my response was more of “huh, I haven’t ever thought of that.”  At that point I had more experience with Autism and knew a little more about it, like that it could be severe, all the way up to high functioning.  I had heard the term Asperger before but knew nothing about it.  So, I was back to googling.  What I found out was surprising.  All the little traits Keira had, that we thought were unique to her and didn’t fit with ADHD, were traits of Aspergers.  It was scary how well she fit into this category.  I remember reading about things that are hard for kids with Aspergers or Autism.  They were the same things Keira would be struggling with and I never really knew the reason.  So, now I was thinking, “okay, well lets look into getting her tested.”  Well, the first thing I found out, is that it’s really expensive, the second thing I found out was that our insurance didn’t cover anything to do with it.  So, now we were at the “what do we do now” part.  I really was researching as much as I could.  I really wanted to know, if this was in fact what was going on with my daughter.  I remember one of the things they say about kids with Aspsergers specifically is that they have some form of obsession.  Whatever their particular obsession is, is all they want to talk about.  Keira, you see has an obsession with animals.  She LOVES them.  She collects stuffed animals and wants new ones all the time.  Just the fact that she even had an obsession, was telling to me.  Now, I know, that kids can all become “obsessed” with some sort of toy or activity.   The difference being, that one, this is typically a phase for kids and they move on after a while and two, while they love the specific toy or whatever, they will do other things, play with other things sometimes, they can move on.  Not so much with Keira.  She will have play dates and while at the friends house, she will play with their stuffed animals.  It’s like, that is it for her, thats all she wants to talk about.  I will talk more about this in a bit.  So, I continued my research, the more I learned the more convinced I became, that, this was indeed what was going on with her.  I decided to try the school route at this point, since we had no funds to cover even a diagnosis for her and the insurance was no help what so ever.  I had a big fear about talking to the school.  I had heard horror stories about parents having to fight with schools to do anything for their kids and let’s be honest I am not a fighter.  The reason for talking to the school, I knew they had programs to help with students that have special needs.  They have whats called 504 plans and then IEP plans.  I had no idea what I needed to do to even begin this process, so I started with talking to the school counselor.  She told me that, there would be meetings involved, testing on her behavior, assessments on her academically, they would need to observe her in the class, etc.  She also gave me the information to get in contact with the schools special education director.  Now, real quick  here is basically the information about the 504 and IEP.  This is something that is nationwide, so basically if your child where placed on one, in one state and then you moved to another state, it would go with their school records to the new school and the help would continue on, which was nice to know.  The 504 plan, is what they place students on, that have issues that interfere with their learning moderately.  On the 504 plan, this is all done in the classroom, they have special instructions for these kids that the teachers have to follow for different things.  For example, some kids have issues testing, just sitting there, reading the questions, so they will put on their 504 plan, that the teacher or other adult, will read the test to them and they can take the test in an environment that is helpful to their situation.  These things are things that can be done in and around the classroom setting.  Now the IEP (which stands for Individual Education Plan) is when these kids that have issues that interferes with their learning significantly.  These students will automatically qualify for the 504 and all it’s benefits and then they will qualify for help outside of the classroom setting as well, these students will get extra tutoring help in whatever areas are needed.  So, now, I got a hold of the special education teacher, telling her I would like to get Keira tested to see if she qualifies for an IEP based on the fact that I believe she has Aspergers.  So, then went the testing process.  There was endless amounts of paperwork, for us to fill out, paperwork for her teacher, and even for the school counselor.  Then came the waiting (at least for me).  At the school they were doing all their assessments for her and other one on one testing in different areas.  They had  a psychologist come in to give her the ADOS test.  This is a test for kids on the Autism spectrum.  Finally they called to set up a meeting for her IEP.  In this meeting, they wanted me there of course, her current teacher, the school counselor, the special education teacher, the reading specialist for the school, and then the speech specialist for the school.  Now, we were to go over Keira’s results they came up with and see where to go from there.  So, I guess based on the ADOS test, she did not qualify for help on the Autism spectrum.  They gave me the number she scored which was a 4.  Now, I really don’t know much about the results or how they work, but from what I have read, I guess they need to score a 5 to qualify, so basically she is one number off.  Now for me personally, I don’t know how accurate, any test can be based on a psychologist, having never have met her before, sitting with her for one hour and that is it.  A lot depends on the child’s mood, during that time, and even the events going on that day, there is just a lot of factors to be considered.  Now, after telling me this, they said not to worry because the school can basically over rule that and decide amongst themselves if they feel that student does need help based on Autism.  Of course, they told me this was in no way any type of diagnosis, but thats what the plan was.  So we sat there and they got out a book, and we went over all the different things the student will be showing in order for them to rule it Autism.  They felt she was showing every single one as we went over each of these.  They told me then, that based on her speech evaluation alone she would qualify for an IEP.  Now, what they decided to do, was to decide how to proceed.  In the end, they decided to put her on an IEP under the Autism umbrella.  Now, she would get special help when needed in her classroom setting, some of the things here are that she has a stuffed dolphin she can hold to help her with math and other things.  She also has this small blanket, like very small like 5x3 inches.  It was crocheted around the edges.  She loves these kinds of blankets that have the crochet edging.  She rubs it between her fingers.  She can have this to help her sit still on the rug.  I keep in close contact with the teacher going over things that help to calm her down if she is having any type of melt down, or other things that happen.  Now outside of the classroom, she qualified for help with her speech, math, reading, and social skills.  It really is a learning process for us to see what works and what doesn’t work. You see, I was so happy that she was on an IEP and getting some help.  I was still continuing to research different things that would be helpful to her as well as reading books.  I bought a book from Barnes and Noble that is very helpful.  But through all this, there was the issue of her not having the actual diagnosis.  I guess in my mind, it left room for doubt.  That, maybe by some chance it was wrong, or people would think I am just trying to diagnose my child or something.  Also, with her getting the actual diagnosis, I believe it will open up doors for her.  Door, that will get her the help that she so desperately needs.

So, that brings us to our current date.  She is on the IEP and we are learning.  We are working towards getting her the official diagnosis, trying to earn enough money to do so.   Now I just wrote all of this without much emotion involved.  It was easier to write it that way.  To go through all the facts of it first.  Now, for the emotional bit.  Learning that there may be something wrong or different about your child gives you that panic.  You don’t ever want anything to be wrong with your child.  Learning what is wrong is such an emotional roller coaster.  I felt like I was punched in the gut, that the wind was knocked out of me and couldn’t quite catch my breath.  There is also a very tiny bit of relief almost, not relief that your child has something, but relief that your much needed questions have been answered finally.  Having these questions, and the unknown associated there, is almost scarier then the reality, thats when your imagination can run wild with all sorts of horrible possibilities.  Then, of course, finding comes with a bit of finality.  You can’t change this, this is it.  Getting this answer, isn’t like finding out your child has RSV or some other sickness.  Now don’t get me wrong learning something like that about your child would be devastating just the same, it’s just different.  You know with RSV or other such illness’ that while yes, they are dangerous and can be deadly.  There is still hope, that everything will eventually be okay.  They will get better and a lot of the kids do get better.  They may have their stay in the hospital or are able to stay home to be treated, but they get better.  I knew that, this wasn’t the case with my daughter.  When we were first finding this information out a lot of people told me to watch this show that is on TV called Parenthood.  There is a family on there that learns that their son has Aspergers and all the things associated with this.  I remember watching one of the episodes where the boy finds out he has this and one of the questions he asks is “will I always have this?”  Then, they have to tell him, that yes, he will always have this.  It’s not something that goes away, it will always be there.  There is no magic pill or treatment for this, you have to learn to cope with it, how to deal with the difficulties that come from it.  I find myself so many times watching that show Parenthood and I will be in tears, seeing what they are dealing with and knowing that I will have similar issues in my road.  There is nothing worse to a parent then having to watch your child suffer in any way.  It makes you feel so completely helpless.  Now, my daughter, she most likely will not have to suffer physically.  Her suffering will be emotionally.  Emotions that she just doesn’t understand.  There have been times through this, that I find myself collapsing on the floor gasping for breath, tears streaming down my face.  Crying anguish for the emotional issues she will have to face in her life.  There has been the of course “why” question.  Why her, why a child.  I have learned that those questions can’t really be answered and there is no one to blame, so that can be a dangerous road to travel, so I try not to stay there to much.  I try to build up my daughter, to prepare her.  To make her strong, so she will realize how amazing she is, when one day peers may be telling her how horrible she is.  I need her to KNOW this, to not EVER doubt it.  I can’t have her feeling like she isn’t good enough, that she is “weird,” or “different,” or a “cry baby.”  Yes, these are all things that she has already been called at school before.  I find myself singing songs to her.  Songs that might empower her, make her realize how awesome she really is.  One of my favorites, that when I listen to it, it makes me cry for her, is True Colors.  The lyrics seem to be about her and I want her to know that who she truly is, is beautiful.  
You with the sad eyes.  Don't be discouraged.  Oh I realize.  Its hard to take courage.  In a world full of people.  You can lose sight of it all.  And the darkness inside you.  Can make you feel so small.  But I see your true colors.  Shining through.  I see your true colors.  And that's why I love you.  So don't be afraid to let them show.  Your true colors.  True colors are beautiful.  Like a rainbow.  Show me a smile then.  Don't be unhappy, can't remember.  When I last saw you laughing.  If this world makes you crazy.  And you've taken all you can bear.  You call me up.  Because you know I'll be there.  And I'll see your true colors.  Shining through.  I see your true colors.  And that's why I love you.  So don't be afraid to let them show.  Your true colors.  True colors are beautiful.  Like a rainbow.
There is a music video, that makes me cry every time I watch it.  It’s called Beautiful Heartbreak by Hilary Weeks.  At the same time it is making me think about the hardships she will have to face, it makes me realize that this world is full of people and everyone has their own hardships.  Everyone one of us has trials.  This is just what ours is I guess.  In the end when they are standing there with their signs, I picture myself holding my own sign.  Some days are easy, some days are so difficult.  I came across, this episode of the Ellen show, where a family was on there.  Their son, had 2 years earlier committed suicide because he was being bullied so bad at school.  Their son had Aspergers.  It made me scared for my daughter.  I sure hope things NEVER come to that.  It’s seeing things like that, that throw me for a loop.  So far we have been lucky with the school.  I was worried about having to fight them to get on an IEP, but that was not the case, they have been amazing to work with.  Keira has kids in her class that look out for her, and while yes, some days are difficult for her with her peers, the school does not tolerate bullying and I am so grateful that we could be in a good school.  I think, it was an answer to a prayer, we hadn’t even known to ask for at the time.  We got in this school before we had any idea about Keira’s issues, before she was even in school.  It was one of those blessings, that we got in advance.  It just goes to show you how much our Father in Heaven watches out for us and helps us through all of our trials.  I don’t even know what I would do without his help through any of this.  I find myself on my knees often asking for help in dealing with one aspect or another of this.
It’s funny, because recently when we were getting ready to go on our cruise and I was trying to make sure everything would be taken care of while we were gone.  It dawned on me, there is so many things that we do in our house, that the typical family doesn’t do, or doesn’t need to do.  These kinds of things are our “normal.”  We do these things without ever really thinking about the fact that these things aren’t other peoples “normals.”  Now, I know every house has there own things they do and every house is different.  But these things are even more on the different side.  It got me thinking a lot of the “why” question.  I get it, I get, that there are things we have to adapt to, you just don’t realize it sometimes.  I decided, that since my mother was going to be watching my kids, she would need instructions.  Now me, being me, I started typing up information that my mom would need.  You see my kids would still be in school that week and with my mom doing daycare, I had to make arrangements for them to be taken to and from school.  So, on one page was any phone number I thought she may need, the next page was there schedule of who would be picking them up and bringing them home and on what days, etc.  This is something most people would need when watching someone else’s children.  Then I decided that Keira needed some instructions to go with her.  That brings me to my first “why”
~Why does my daughter need to come with a set of instructions?
As I am typing these up, it ended up being 5 pages long, 5 PAGES!  She needed a lot of instructions to help things go smoothly and to help my mom from having to endure one of her difficult meltdowns.  What did I type on these pages?  Some of it was things that are our “normal.”  Like for example, when Keira says her bedtime prayers it HAS to be absolutely silent!  If she hears anything, she will stop and start again, if noises happen to many times then a melt down is sure to come.  Also, she will stop during the middle of her prayer and ask “where are we going tomorrow?”  She does this EVERY time.  You can’t tell her before her prayer where we are going tomorrow because then when she gets to that part, she will stop and start over again and then start to get frustrated.  There are many things like this, that we deal with all throughout the day.  With brushing her teeth, with getting out the door to school, going to church, at church, at school, eating meals.  Which brings me to another why.
~Why is she so picky?
When I say picky, you have no idea.  She is very specific with some of her things she will or will not eat.  Like, she loves yogurt, but it cannot have chunks in it, she loves apples, but not applesauce, she will not eat ice cream because it’s to cold.  Some things she won’t try because of texture or color or because it’s new to her and she just will NOT try new things.  Sometimes I worry about what nutrition she gets.  The only fruit I can get her to eat is apples and one bite of a banana and that is on a good day.  Vegetables you can forget about.  I never usually tell her when we are planning to go somewhere or to do something fun.
~Why can’t we all plan as a family to go and do something fun?
If I tell her in advance what is going on, then it’s every hour of every day, “when are we going?”  I know that a lot of kids do that, but with her, her concept of time is not there.  She doesn’t understand and she starts to get really frustrated with passing days and the activity not happening yet.  Then, if by any chance our plans get changed for any reason or something falls through, if I have to tell her that we are not going somewhere or doing something that we where planning, it will be an instant melt down.
What are some of the differences I notice in my daughter compared to other children her age?  It’s in the way I observe other children playing with each other.  My 4 year old Jayda is naturally drawn to other children.  Most kids start to play with other kids more around the age of three.  As I sit at my moms daycare watching the kids as they are all playing with each other, some in pairs, some in groups all playing something with someone.  I look and I don’t see Keira, I go and find her content to be all by herself in her own world.  This is frequent.  Not all the time, she will play with other kids, but usually they will initiate the play.  It’s in the way that she still gets upset at something and I watch her arch her back severely stand on her tip toes and scream at the top of her lungs.  Usually when kids are 7-8 years old they have grown out of the tantrums, not her though.  We frequently talk about different things that will set her off.  It’s in the way as I watch other kids socially grow past her.  She has never really played with kids her own age, it was always kids about a year younger.  Now we are watching as those kids that are a year younger grow past her socially and she is playing with kids even younger then that now.  It’s in the way that the kids in her classroom just seem to know that there is something different about her.  They have even asked about it.  It’s in the way where she will talk to adults by getting right in their faces sometimes rubbing their chest (to my utter embarrassment) and if they turn their heads she will grab it and say, “hey I need to  talk to you.”  She has no concept of personal space, however at the same time she does not like to be touched.  I could go on and on and on about all the different things that make Keira tick, but that would make this already long post that much longer.
In the end, I love this kid with all my heart and I want what is best for her.  I want her to be happy in all that she does, I want her to succeed.  As her mom I will do what I need to do, to ensure she gets the things that she needs.

1 comment:

Camie Rae said...

Oh you sweet lady! My heart is so proud and happy and broken for you! You are so strong and I only wish I could be half the woman you are! Love you so much!!