Unlocking My Daughter’s World.


Anyone with a child on the autism spectrum will hear this statement at least once in their lives.  “But (s)he looks so normal!”

I see it every day.  People try to fit things into neat, tidy little boxes and most times, it just is not going to work.  I hear it and say it daily.  If you have met one child with autism, you have met 1 child with autism.

It had been a long journey for my family.  We knew very early on that my Ninja Turtle was never going to fit into that neat little box that everyone always tried to stuff her into.  She moved to the beat of her own drum, even as an infant.  After 3 years, the doctors finally listened, and at 3 and a half years old, the verdict was in.  Autism.

I see a lot of parents who feel crushed when they get that diagnosis.  The feel it as a blow.  Many are in denial.  My husband and I just asked, okay, what comes next.  We really didn’t have the shock that we see in a lot of our peers.  We didn’t view it as a loss.  Maybe that means there is something wrong with us.  Maybe we accepted what we were told too easily.  Who knows.  For me, it was about not wasting time or energy on things that cannot be changed.

Let me get this out there now.  I am not in the camp that believes autism is caused by vaccines.  I do not buy into the myriad of “causes” that crop up in the news.  For us, it just is.  I am not going to waste time getting caught up in the what if’s when I could spend that time learning with my child.

Every day with Ninja Turtle is a learning experience.  Every day brings something new.  Some new little nuance or idea or focus that comes into play.  Because she is always learning.  She is always growing. Oh, and she remembers EVERYTHING.

I find it amusingly fitting that her favorite pastime is doing puzzles.  And I find it even more amusing that she completes the simple ones for her age group in literally seconds.  Sure, she still can’t quite get the concept of telling us she needs to go potty BEFORE the pullup needs changed, but she can complete a 24 piece puzzle in under a minute.  And then takes it apart and does it again.  And again.  And again.

Rather than focusing on trying to fit my daughter into the neat little box that the world has created for her, we spend our time trying to stretch that box to fit the shape of her world.

We learn as we go and every day is different.  What works today may not tomorrow, and the tricks from yesterday are no longer as effective as they used to be. Summer has been a challenge.  Try as I may, I am not able to replicate a classroom structure for her, especially when on any given day, there are 1-3 other children in my house.  But you know what, that is okay.

The biggest challenge we have faced as a family is learning to balance.  I have two children who do not have autism, and one who does.  Parents of special needs children will tell you it can be easy to become so focused on the child that needs you more.  We try every day (and sometimes, we probably fail) to make sure that all of our children know that they are loved.  We find time for each of them.  Some days, that is easier said than done.

Ironically, the biggest step to that has been the family meal.

Dinner in my house used to be grab a plate and squat where you can find space.  Recently, we made a concerted effort to clear the table and sit and eat as a family.  Picture it.

A stay at home dad who takes on a large number of the household responsibilities;

A workaholic mom who spends 12+ hours a day making the pittance that keeps us afloat;

An 11 year old boy who is teetering on the edge between child and teen, trying to find his place;

An 8 year old girl who has had more roller coasters in her life in the last year than Busch Gardens

And the almost 4 year old Ninja Turtle who doesn’t do change. At all.  Ever.

You got the picture?

Okay, so now, dad thought if we are doing a family meal, we might start the meal with a prayer, something simple, thanking God for the meal before us since we know many who will go without a meal today.

Now imagine the shock when, after hearing a fairly simple (to some of us” prayer of “God is great, God is good,  Let us thank Him for this food” only once, Ninja Turtle has now taken it upon herself to say that prayer every time we sit down to eat!

Do you know what her older brother and sister did when they heard her say it for the first time (which was only the third night the prayer was said in our house)?  They made a HUGE deal out of it.  They applauded her.  They have lifted her up and reveled in what makes her who she is.

We try daily to learn to be a part of her world, instead of trying to make her fit into ours.  Try it.  You might be surprised.

Ninja Turtle Has Started School (and we are still trying to win her an iPad)


Ninja Turtle has now had 3 days of school.  And guess what?  She loves it!  She cried when the bus brought her home yesterday, she wanted to go back to school.  We gently reminded her she could go back in the morning, and she calmed.  She is even trying new foods at school.  Yesterday was baked ziti.  I can’t seem to get a straight answer about what she ate today.  It melts my heart to see her enjoying school so much, but at the same time, it makes me want to cry because I miss her so much.  But I am glad that she is getting the services she needs.  I have heard so many parents tell nightmare stories about how they had to fight for accomodations for their child, and then the IEP was never followed.  I am glad that we have access to good schools for those things here and that it was surprisingly easy to get her the things I and the evaluation team felt that she needed.  She gets physical therapy and speech therapy.  They are evaluating her for occupational therapy.  She gets door to door bus service gets walked by hand to everywhere she needs to go.

 

I am working on writing about our experiences thus far and what it is like raising a child on the autism spectrum.  I think there needs to be more awareness.

 

We are still working with The Puzzling Piece to try and win Lauren an iPad, and if 60 pieces of jewelry are bought in our names, then she will be given one.  Everything on this page under the iPad challenge tab will count and you just need to put my name (Lisa LaVergne-Pottgen) in the challenger name box when you make a purchase for us to get credit for it!  Thanks for taking a look.  

And then, the Ninja Turtle goes to school.

Posted On March 25, 2014

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Ninja Turtle had her staffing/IEP meeting last week.  She very definitely qualifies for services, and much more than we thought or hoped for.  She will get physical therapy and speech therapy and occupational therapy, as well as the regular classroom stuff that goes along with it.  She will also get swim therapy, as they called it, and things are looking up.  Ninja Turtle will be in a full day, 5 day a week program and ride a school bus and get to make new friends and learn new things.  There will be 7 kids in her class, including her, and 2 adults.  I am looking forward to this next step in our Journey.  Of course, now I must fight the good fight and find a Doc McStuffins or Dora or Minnie Mouse backpack!

Ninja Turtle’s Quest Continues (or, Ninja Turtle Need an iPad, and here is how she can get one)

Posted On March 1, 2014

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Well, Ninja Turtle officially has an educational diagnosis that puts her solidly on the autism spectrum.  Now begins the quest for services and therapies and finding the things that are going to work for her to get her on the right track to make the most of what life has to offer her.  

Several people along the path have suggested an iPad, and I have scoffed, as I have persistently been a very outspoken opponent of Apple products.  I know, I know.  But I really dislike all the proprietariness of the whole thing.  But there is a fact that remains.  In terms of adaptability apps for autistic kids, the iPad has the best options out there.  But, how can I make that happen on my limited and fixed income?  I was confused and at a loss.  

Enter The Puzzling Piece.  The Puzzling Piece is a program that aims to help raise awareness about autism, and also helps the families of autistic children through fundraising.  When a family has people buy jewelry items and list their name as the challenger, and 60 pieces are sold, that family is provided with an ipad for the autistic child!   So, that is what we are trying to do.  

 

If any of you can go to this site:  http://thepuzzlingpiece.com/products_ic.html

And then list my name, Lisa LaVergne-Pottgen as the challenger when you make a purchase, then that will help towards Ninja Turtle acquiring an iPad to further help in her therapy and treatments to help her be able to meet her potential.

Ninja Turtle’s Journey Continues part 2

Posted On February 6, 2014

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So, Ninja Turtle had her school district evaluation yesterday.  The results were not exactly unexpected, but still overwhelming at the same time.  For those of you who have not followed along thus far, this is Ninja Turtle.

 

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She is almost 3 and a half now.  The current state of the union is an alphabet soup list, including PDD (pervasive developmental disorder), ODD (oppositional defiant disorder), ADHD (attention deficit/hyperactivity disorder), and mild to moderate autism.  PDD is also an autism spectrum disorder.  On one hand it feels good to know that I was not crazy and my child does have something going on that makes it so that her little brain does things differently than that of other kids her age, and at the same time it is incredibly overwhelming to try to think about what is ahead of us and what the future is going to hold for her.  

As a parent, we all just want what is best for our children.  We want them to have all of the opportunities we had, and often, the ones we did not as well.  And so, when you are the parent of a special needs child, it is hard to adapt to the knowledge that things won’t always necessarily be the way you pictured them when you gazed at the ultrasound photo, or into the sleeping face of your newborn child.  

A friend suggested I take some time to mourn the life I thought was ahead, so that I could accept what the reality was going to be and I could move forward.  But you know what?  I don’t like that idea.  I don’t feel as though I have to mourn anything.  I feel as though this is a blessing in a way.  

Let me explain.  Most kids learn to say I love you around when they learn to use complete sentences, and often, that phrase is thrown around a lot and often said to a lot of people.  My daughter is 3 and a half and we only very recently heard that for the first time.  To me that means that that “I love you” was earned, and she doesn’t say it to anyone other than mommy and daddy, and she does not say it often.  

Each day, I learn something new.  Each day is full of challenges and triumphs and new experiences.  Each day we learn a new thing about what she can or cannot handle, and each day we find new reasons to smile and take joy in the life we have been given.  

 

For today, I will revel in knowing that there are things we can do to help her and soon, she will be able to begin school and her learning adventure will begin.

Ninja Turtle’s Journey Continues

Posted On December 5, 2013

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Well, Ninja Turtle had her evaluation with the school board today.  She failed, and spectacularly so.  They screen a total of 5 areas:

  • Adaptive Behavior
  • Personal/Social Skills
  • Communication
  • Motor Skills
  • Cognitive

Of the above, Ninja Turtle scored more than 2 standard deviations off the curve in the first three, 1.5 standard deviations off the curve on the 4th, and the only one she passed was the Cognitive section.  Essentially, she is smart enough to learn, but unless you can find a way to get that information into her brain, it is useless.  OR, at least that is how my exhausted brain is translating it.  Now, we wait for the formal full educational evaluation.  And then will come the staffing meeting, where the IEP is developed.  I am not entirely new to this process, but I am new to having to do all of this with this severity of delay and disability.  On the Personal/Social Skills arm of the eval, she scored an 11, where passing is 24.  

 

Essentially, when you put all of the pieces together, my beautiful 3 year old girl has the skills of a child about half her age or less in most areas, but the intellectual capacity that does not match up with that at all, because she is highly intelligent, she just can’t show us.

 

I knew beyond a doubt Ninja Turtle would have delays, and I knew they were drastic.  But as a parent of a special needs child, it is very frustrating to sit and listen to people say things like “oh, well why is she not potty trained yet?  You must be lazy and not pushing her to do it.”  No, lady.  She is not potty trained because her skill set is that of a 15-18 month old.  How many 15 month olds are potty trained?  

I will not ever place unreasonable expectations on my child and I will not push her toward something she is not ready for or able to handle yet.  We might try the potty training a little more energetically at 4, maybe 5, when she has had some therapy under her belt and has maybe begun to make advances in her skills.  But if not, oh well.  I will cross that bridge when we come to it and I don’t expect to be judged by people who will never understand until they have walked a mile in my shoes.

Ninja Turtle is up to 4.5 mg of melatonin, and still is not getting a full nights sleep.  We think this might be because we had run out of her l-theanine and were trying to see if it was really helping, so we haven’t had any for two weeks.  The outbursts without it have gotten more severe, and we decided that it was better to continue her on it, and we started that back today.  It is quiet in my house, she is napping.  And so mommy is going to go take a nap, too!  But first, I wanted to get this out there.  Share this with your friends.  The more people that are informed the better.

 

People who have not had the privilege of raising a special needs child have absolutely no clue what that is really like. You know all of those great parenting tips they spout off? Chances are, when you have a special needs child, they are useless.

A child with special needs will often process information differently than their age peers will and so the learning process for them is completely different.

Other parents look at us like we are crazy or the worst parent in the world when our child has a public meltdown, and they think it is a failing on our part.

I am writing this out because I am tired of the stigma. I am tired of feeling 2 inches tall from the stares from other people in public places.

My child has autism. If you do not know what that is, you should get informed. You know that kid that had the complete meltdown in the store over what seemed like a minor thing, so you thought they were a spoiled brat? Or that kid that, instead of saying excuse me, said get out of the way, so you thought they were a rude, bratty child? That was my kid. And our day had started before your alarm clock even thought about going off, and it will end long after you go to bed. For a child with an autism spectrum disorder, the minor details can be devastating to them. Change what time my kid showers for the day and life comes to a grinding halt until her sensory processing systems can come back online.

So the next time, before you make an assumption, ask yourself “how would I want my child treated if they had a disorder that affected them in every aspect of their lives?”

We stigmatize childhood disabilities and that is what creates this arrogant lack of understanding. It is time that that stops. If we inform ourselves and those around us about these special angels, maybe it will make a difference.

Because raising a child with special needs is a privilege.  We are granted these little miraculous balls of energy.  We get to revel in their presence and let them teach us what miracles lay in the world.

Having Faith in the Face of a Storm

Posted On August 12, 2013

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Well, friends I have had a royal crap storm of a day.  It was a Murphy’s Law kind of day, to be sure.  You know the ones, don’t you?  The everything that can go wrong, does, kind of life happens days?  We have all had them, haven’t we?

I am not going to lie.  I did not handle it well.  There were tears.  A lot of tears.  I ran through the entire realm of emotions that one can experience in a 24 hour period.  And I am relatively certain that it is not over yet.

So this got me to thinking.  How does one continue to have faith in the face of a raging storm?  How do you pick up the pieces and move on when all you want to do is continue to crumble?  After all, falling to pieces and crying and completely losing it can be almost cathartic, right?  But is it productive?

The answer is no.  Nothing can be accomplished while you are in an emotional turmoil.  And the more I allow my emotions to control my life, the harder it is to refocus, recenter and face what really needs to be done.

I am a thinker, a planner.  I do not generally let my emotions control and guide me.  I am a list maker.  I am the one that has a plan and a schedule and a routine that I rarely deviate from.  You know what?  Those that seek to destroy my faith and my ability to cope thrive on when I lose it.  Do I want to let anything have that kind of power over me?  I shouldn’t.

And yet, when things get so overwhelming, I will generally break.  my resolve will falter and I lose all sense of who I am, where I want to be, and what I want to accomplish.  Emotions do not solve anything.  They never have and they never will.  

But how does one have faith in the middle of a crapstorm?  How do you pick yourself up, dust yourself off and remember that you are not in charge and that there is a plan?  Because I still struggle with that one.

I still struggle to retain control of the things in my life that feel the most out of control.  I still struggle with trying to lead the way, blaze the trail of my own destiny and sometimes I need to be reminded that it just does not work that way.

My faith has faltered and I stand at a crossroads, possibly as a direct result.  Do I continue to let these circumstances and situations control me?  Or do I reach out from the ledge and jump and accept that I will not go crashing to the earth?  That there is someone/something out there that cares about me, even when I have lost the ability to do so for myself?

The hard and fast answer to all of that is, truthfully, I have no flipping idea.  Faith has always been a struggle for me.  My faith in humanity is definitely wavering right now.  It would be a lie if I told you otherwise.  But can my faith in something so much greater recover?  Possibly.  If I learn to accept a few simple facts.

  1. I am not in charge today.
  2. Who is in charge does not need my help running the show.
  3. If I keep falling flat on my face, maybe it is time to tie my shoes.
  4. Maybe if I stopped putting my faith in people and things, I would not get let down so much.
  5. And for the big one….  I cannot control anyone else’s actions but my own.

I need to take a step back and look at what is happening around me.  The most excruciating blows have come when I was trying to run the show and refusing the accept that I needed much more help than any human being could give me.

I need to make a plan that includes my having faith that I will be guided in the direction I need to go.  The next right answer will reveal itself to me….  When I am ready for it.  When I have taken the steps to get myself ready for it.

I need to renew my center of balance.  I need to remember that life is about the journey.

Will I do this perfectly and without exception every time?  Absolutely not.  But it is a journey and a process.  Every day takes me a step closer.  I need to remember not to miss any of it, because every experience will shape the woman I become.  I am not done yet.

The biggest thing I need to remember?  Don’t give up before the miracle happens.  Because it is out there for every one of us.  I just have to remember that it is coming, and be open to the possibilities.  

It is Eerily Quiet here right now. Should I be afraid?

Posted On July 30, 2013

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My oldest 2 are off visiting with their grandma who they have not seen in quite a while, and who is in town for just a couple of days.  And I believe the Ninja Turtle is asleep.

I am sitting here reflecting tonight.  Little Man turns 10 on Thursday.  Ahh, yes, the double digits.  Does that officially make him a pre-teen?  Am I officially headed toward puberty rearing it’s ugly head and my sense of peace and calm washing away as the deluge strikes?  Who knows.

The facts as I know them are simple:

  • I have cherished every moment with each one of my children, regardless of any challenges or difficulties.
  • There are sure to be more bumps in the road as we go along.
  • Nothing is perfect, and I have learned to accept that.
  • I love these three little human beings with ever fiber of my being and would do anything within my power to make sure they are happy and healthy and cared for.
  • This journey is just beginning.

Each one of my precious children has had their own set of ,,, challenges within their personality traits and within the young man and young women that they will grow up to be.  Ninja Turtle will continue to struggle as she gets older, and there is nothing I can do to change that.  It is who she is and who God has designed her to be.  But I know beyond a doubt that God gave me these children for a reason, because I was the one designed to be there for them.  That is what I plan to do, each and every day, for as long as I am breathing air.

It has not always been easy.  Nothing worth having ever is.

My older two children have to deal with having mom and dad in separate places and having two homes.  I hope that as they grow, we do our best to enforce to them that this just means there are more people to love them, that they are lucky enough to have not only a mom and a dad, but also a stepmother and a stepfather that love them very much and will always be there for them.

For Ninja Turtle, I try to just cherish every moment, because things with her change suddenly and without warning and there is no telling where the next curve in the road will take us, but it is a journey more than a challenge.  We are all learning as we go and I don’t think we will ever really arrive.  I think the journey will just continue to evolve.

 

And on that contemplative note, I am going to go curl up in my recliner with my coffee and a book, and watch some sappy old TV shows with my wonderful husband.  These are the moments we need to cherish, because they do not come often enough, where we have a few moments just for the two of us.  I hope you all have a wonderful evening, and will see you again soon.  

Ninja Turtles Are Allowed to Cry, Too.

Posted On July 29, 2013

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So, so far, we have had only minor incidents, but today, Ninja Turtle had a major setback.  She adores her brother and sister.  When they go back to their dads, she is inconsolable and hates being left behind.  Ninja Turtle is from my second marriage, so she stays here with me and daddy always.  But when her bubby and her sissy go away without her, she does not handle things well.

Today, her brother and sister got to do something that she didn’t, and she cried for a solid 10 minutes.  After that, she pouted.  She sat in her high chair, her head on her shoulder, with a sad, faraway look on her face.  You know the look.  Like someone just kicked your dog.  And she sat like that for an hour.

I asked for a hug or a kiss several times in this period and she told me “No.”  Any other questions elicited a “No.  Mad.” response.

 

But you see, I can handle this.  I am able to accomplish anything that comes before me.  After all, I am the mother of a Ninja Turtle!  

Reflection

Posted On June 5, 2013

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I posted something about this on Facebook as well, but I wanted to write a little more about it here, as well.  I felt so limited by Facebook and like I couldn’t say what was really on my mind. 

grandma1
Today would have been my grandmother’s 85th birthday.  She passed away in April of 2012. 

I had lost touch with her that last few years.  I had lost touch with a lot of people that last few years.  I allowed my life to get in the way of what was important – family.

I have cousins who have children the same age as my own that they will never know. I have cousins that I was very close to growing up that I haven’t spoken to in about half of my life. I’m going to be 32 this year. That’s a long time to let words go unspoken. And yet, I cannot figure out how to bridge the gap that has grown into a huge chasm. I cannot figure or how to nine forward.

I started to write this post on my tablet, and decided to move to the computer to make it a little easier, though nothing about this is easy. I fully expect the tears to flow freely by the time I am done.

I am surrounded every day by people who love and care for me. I have a wonderful, loving husband and three beautiful children, two of whom I worry that I can never spend enough time with, as their time is shared between here and their other home.

But yet, even with being surrounded by people who love and care for me as they do, I still feel as though there is a part of me that is missing.

I should be able to be happy. While my family had to say goodbye to a lot of people this year, the loss of my grandmother pictured above in April, and then the loss of my grandfather, James O’Neill, my mother’s father whom I regrettably do not have a photo of, but we also had moments of celebration. I became an aunt.

Jamie

That little girl fills me with hope for the future. Her parents are young, but they are well equipped to provide for her and they are surrounded by friends and family who will help and support and love them in whatever life may throw their way. And that is the way it should be.

And yet, I still feel like a piece of my heart is missing. Many years ago, a gap formed within my family that has since seemingly grown to be as large as the Grand Canyon and no matter what I try to do, I cannot find the way to bridge it.

As children, we sit idly by and allow life to happen around us, never owning it or taking control of the destiny, the course that is laid out before us. We are guided and loved and protected by those who are charged with caring for us. And as we grow, we gain the strength and confidence to stand on our own, to stand tall and proud and be able to allow life to continue on.

Too much time has passed. I realize that now. I realize this because, now I am an adult and I feel the weight of this divisiveness resting squarely on my shoulders. How do I move forward without looking back? Honestly, I have no idea.

With the loss of my grandmother last year, I realized that it had been too long and I needed to do something. This became evident in the manner in which I found out that she had passed on. I hadn’t even known she was ill. It was one cousin who was brave enough to cross the chasm and reach out, and they did so knowing that there was a strong possibility that others would disapprove, but they felt it was the right thing to do.

Then, I had a health scare. I was at a gym and began having some intense chest pains that were abated after a while after the exercise was ceased. I went to the doctor. Turns out, I have a mild heart defect. Eventually, I will need to have valve replacement surgery. This is a scary prospect, as my father was around my age when he had his first heart attack. And let’s talk about my father’s health. He is in his early 50s and has had at least a triple bypass, has had to have one kidney removed, has had multiple heart catheterizations and stents placed. This man has survived cancer, twice. He has beaten the odds every step of the way.

We never know when our time is going to be up. I decided I could not let another year go by without trying very hard to right whatever had gone wrong.

And some were receptive. Some responded right away, and others took time and we are still building the relationship that we lost when I was a very young child.

And others, well others have not been receptive and will not even respond telling me to go away. They just ignore my efforts. I need to learn that I cannot control the actions of others. That I have done my best, and that I have to let it go and move forward, but I cannot figure out how.

Photo_00001It is in looking at my youngest child that some of these things sting the most. You see the little girl in that photo? She is 2-1/2. She has a lot of health issues, conditions that are most likely genetic, though due to the circumstances, I am not able to find out a lot about family history with our extended family and if I could, it might answer a lot of questions. I have honestly been told that knowing the history with my cousins and their children would possibly shed light on what we are really dealing with with her and what the best course of action would be, but unfortunately, that information is just outside of my reach. The neurologist suspects something in the realm of autism and a mild cerebral palsy, caused by a genetic factor, but because the family history is lost, she will have to undergo painful genetic testing to find out and it will delay diagnosis and treatment.

But the reality for me is this. Life is too short. I need to reach out where I can. Do I give up and try to move on, knowing that I did the best I could, but always feeling like if it was good enough, the distance I feel in my heart would be healed? Or do I keep trying, keep getting pushed away, and keep feeling my heart break into a million pieces every time?

I don’t know. I don’t know all of the answers. I don’t know what it is my heart needs to heal, to move forward. I wish we lived in a perfect world and family knew how to let go of the past and move on, but I realize now that too much time has passed. I realize that the anger, the distrust, and the unhappiness has been allowed to breed for too long to allow that to happen.

I can only hope that in the end, they know that I love them, and that I miss them, and I wish I knew how to set things right. For some of these things, in the case of my cousins, the battle was not even ours. We shouldn’t let it effect us, but some just don’t know anything else. There is nothing more I can do.

See, I knew the tears would flow freely by the time I finished this, and they are. Luckily, I have some tissues at hand to stem the flow.

And in writing this all out, I can begin to heal. My childhood is long gone and I am an adult. It is time for me to be the change I wish to see. I will live my life to the fullest every day, never knowing when it will be the last. I will reach out and connect where I am able and allowed, and perhaps the rest will come in time.

IF you have ever been a part of my life, or touched me in any way, know that I will never forget and I love you all very much. For anyone I have lost touch with over the years, friends, family or otherwise, I am right here.

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