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.

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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.  

My Life with a Ninja Turtle (or, living with a 2 year old on the autism spectrum)


The last several months have been challenging, exhausting, exhilarating and eventful, all at the same time. How can all of those emotions happen simultaneously? If you have to ask that question, then I am almost certain that you do not have a child on the autism spectrum.

Living with a toddler can be challenging in and of itself, but when that toddler is on the autism spectrum, the emotional responses to everyday occurrences will vary much more widely.

For example, a typical day for us would put many parents over the edge.

To hear my child screaming at the top of her lungs that the washer is too loud and to “turn it down” might seem strange and daunting to many. To me it is a triumph that she is telling us what is bothering her, rather than just having the outright meltdown and tantrum that will often accompany an overload of some kind for her system.

See, we just got a washing machine. We had either done our laundry at laundromats or relatives’ houses, or more recently, we had taken to washing our clothes by hand. But a few days ago, I found a washer for sale for a price that was within our budget and so I jumped on it without hesitation. 30 bucks for the ability to have clean clothes and not have to scrub them in buckets? Hell yeah.

So I had no idea that the sound that the washer makes when it goes off balance was going to put my little one over the edge. Nor did I know that even when not off balance, the sounds emitted by the machine would still put her over the edge. She does not like loud noises, and yet can sleep through pretty much anything.

I am now on the hunt for ear plugs or noise reduction ear muffs that will help her with this challenge.

We are also on the hunt for door alarms. Which pretty much brings me to why she has been dubbed the Ninja Turtle. It is a bit ironic, really, because she is quite fond of the Ninja Turtle cartoons. This morning, after I worked all night and finally passed out around 6 in my recliner, I awake at 7:30 to my husband standing over me and telling me I need to get up because we have a problem. Ninja Turtle managed to get past us both while we slept, and proceeded to “help mommy” by cleaning out the refrigerator. There were about a dozen eggs and 3 pounds of sugar encrusting on my kitchen floor. Our floor is tile. This was a big mess. Not to mention the last of the sugar for a week. As my husband is assessing the situation, I get handed a gallon of milk. Apparently, luckily for us, she couldn’t figure out how to open the jug. I could tell that she had only done this level of destruction just minutes before because the milk was still cold.

Now for today’s journey, I am on the hunt for a door alarm so she will be less likely to leave her room undetected. I am also on the hunt for a way to childproof a side-by-side refrigerator.

Anyone have any tips?