Fall Back...into Hell...

The seasons they are a-changing. I LOVE this time of year....the falling back, the cooler weather, warm slippers, long pj's on tiny humans, sweaters, hot chocolate, football, fires, no hurricanes, pumpkins, turkeys, mommy wanting to drink because her child has lost his ever loving mind....

er what?

Yes, perhaps you mommies of children with Autism or other special needs are aware of this phenomenon. I do NOT have any data to back this up, but my son's therapists have told me he's not unique that when the weather changes, seasons change or even if a bad storm is approaching, their children on the spectrum go NUTS.  Children who were making fine progress may regress, others may have rampant mood swings, others may stim a lot more than before, and overall it just drives parents/therapists/the poor old lady at walmart INSANE.

Eli has taken the rampant mood swing route. If I did not know he was a nearly 3 yr old boy, I'd swear he was PMS'ing. We LITERALLY had this exchange this morning...

"HI MOMMY!" (happy as can be)
"Hi Eli!" (returning happiness)
"I...want...jerky" (fruit strips from target)
"Okay buddy!"

Mommy gets out jerky, unwraps it, hands it to Eli..

Commence meltdown of Chernobyl proportions. I take jerky away. Screams. I give back. Screams.

This continues over EVERY DECISION HE COULD MAKE DURING THE DAY.
Socks on. Screams.
Socks off. Screams.
Needs Diaper changed. Screams.
Clean diaper on..Screams.

God bless naps and daddy being home on Sunday...

Let's just pray he adjusts to the temp/season changes soon...we're stuck home ALL DAY tomorrow awaiting a UPS package I have to sign for. Oh the suspense...

~~Amy

Blog Flashback...

Taking a trip into the way back blog files and reposting this one from March 2010:
____________________
It is often hard to explain Autism to people because EVERYONE knows about it, but quite honestly, unless you know someone WITH it, it's really hard to describe. There are also lots of myth's and preconceived notions about Autism.

Here are some thoughts I had from my son's point of view.

~~~
I am blonde, beautiful, and happy.
I am two years old and love circles.
Don't bother arguing with me that two is too young to be diagnosed with Autism..
my Mommy took me to the best.

I may repeat your words but I don't really "Talk.". But I am not stupid.

I am a sensory seeker and love rough play..but don't assume my friends will. We are not all the same.
I am Autism.

I will scream when you cut my hair, take away my puzzle pieces and turn off Baby Einstein.
Sometimes you may leave a room and I won't notice.
Sometimes I will...and proceed to tear it apart until you return.
I am Autism.

You will get dirty looks from strangers who think I am just a bad kid having a meltdown and
you stink as a parent.
Go ahead..give them a dirty look back...I'm too busy having a meltdown to notice.
I am Autism.

I will eat bananas on Monday.
But not on Tuesday.
I may try the juice you give me...
but only if its red...
and in a green cup...
or I may just throw the darn thing down and fuss.
I am Autism.

I may sleep great, but  my friends may not.
Potty training may be a fantasy...
Simple errands may drive my mommy insane...
I am Autism.

But despite all that...
I am a child, and "A Person is a Person, No Matter How Small"
As Dr Seuss says (and I like Dr Seuss.)
I do love you, I do need you, and I do miss you when you're gone.
I may not run and hug you (or I may!) and I may not say your name,
but you know I'm in here, waiting for you to help me come out.

And I know you love me more than I will ever know.
I know it by hugs, kisses, and that we try it all again the next day.

We'll try therapies, we'll try games, toys, books--everything "THEY" say to do.
I'll try it all with you Mommy, because I know you know,
I am Autism.

And that is okay!
~~~~~~~~~~~~~

Mommy here now...

I am 110% thankfully every day for my life. Eli is extremely high functioning and I remind myself that is a huge gift. He is not dying, he does not need surgeries or meds, and he DOES hug me, love me and look at me.

But some days those blessings are a curse. How can a child who can name colors, not say Mommy? How can he not call my name, his dad's or his brother's? How can we do a puzzle in peace, but when we go to the store we MUST go get a banana so he can hold it through the entire store? Why are some of the simplest tasks the hardest, but then the next day they'll be a breeze? How do you make sure your other more 'typical' child (with issues of his own) is given the same attention as his Autistic brother?

People have asked me, are you sure you're done having kids? When I say yes, and they ask why, I reply, "I have one son with sensory issues and one with Autism". They often say, "so?"

Obviously those people have never spent any reasonable amount of time dealing with even a high functioning Autistic child. They have never had to wonder, will I be able to potty train my child? Will he function okay in school? Will he be able to work one day? Those questions don't go through most people's minds because at first glance, Eli is adorable, he says colors and shapes and he (most of the time) listens to simple commands.

But for the good days there are bad, and sometimes it makes me think. I know I do the best I can, and I have faith he will continue to improve. But the downside of him being high functioning, is it's easy to forget that we STILL need to "fight" for him to continue to grow..it's easy to become complacent. Going to the grocery store, park, bank or what not should NOT be a drama..but it is...and until the day it isn't...I will keep working...fighting for the 'real' Eli to keep coming out.

I hope this makes you think again about any Autistic children (or any special needs) children you may know. Please don't ever judge these families until you have walked a mile in their shoes. And just because it LOOKS like a mom may have it all under control...it could be an act... maybe you can just lend a hand...hold a diaper bag...make a dinner...do SOMETHING for a mom who needs a helping hand.

Thanks for letting me vent my friends! :)
~~Amy

Adventures in ABA Therapy: Part One

So, we're 1.5 weeks into our ABA therapy. A little background if you're not familiar, my 2.5 yr old was diagnosed with Autism at 18 months. He's very high functioning and making leaps and bounds.

First off let me say, I am incredibly thankful for this opportunity. We were blessed enough to find a therapist in training who needs to complete her hours and is generously working with Eli for free! Granted, most ABA therapy is 15 or more hours a week, but I'll take what I can get! Mrs. M comes once a week and so far I'm happy! We had a good session last week. His homework for the week was:

1. When he pulls on me to lead me to what he wants, he must point and then give a verbal request, preferably, "I want _____."

2. Point at things he's excited about.

How'd he do? Well, he's done great!! For example:

He has seemed to gotten the knack of pointing and has pointed many times at what he wants or something he loves like school buses, flags and cars.

He's also done this several times,  lead me to the fridge/pantry, pointed to what he wants and then I asked, "what do you want?" and he said, "I want Milk!"!! Once he walked to the pantry and UNPROMPTED he said, "I want fish!" (swedish fish).

Last night as we were going to bed and I walked out the room and said, "Nite nite boys" He called out, "Nite Nite Mommy! Nite Nite Daddy!". Pretty darn awesome I tell you.

I am very confident that in time, when he's in school no one will ever know he had a diagnosis of Autism. In my opinion, this won't mean he never had it. The way I look at Autism is this, its much like cancer. You get a diagnosis and you work on a plan. Sometimes, you can put the cancer in remission and live a normal life...sometimes you can't. Either way, it never takes away the diagnosis...you had cancer. Now you're just living in remission.

That's how I view Autism. Eli will always be autistic. But with the right therapies, gluten free diet and behavior modificiations, he can live a full life in "remission" of Autism. I hope that makes sense.

So, we shall see how this week goes! I'm very happy to have made my decision to stay home with him and not work full time. I think we'll get a lot done in his progress so he can be more ready for the Preschool Early Intervention school he'll be eligible for in January.

I'll keep you updated! :)
~~Amy

This is a big deal, he hated coloring just a few months ago. :)

I Am Autism....

It is often hard to explain Autism to people because EVERYONE knows about it, but quite honestly, unless you know someone WITH it, it's really hard to describe. There are also lots of myth's and preconceived notions about Autism.

Here are some thoughts I had from my son's point of view.

~~~
I am blonde, beautiful, and happy.
I am two years old and love circles.
Don't bother arguing with me that two is too young to be diagnosed with Autism..
my Mommy took me to the best.

I may repeat your words but I don't really "Talk.". But I am not stupid.

I am a sensory seeker and love rough play..but don't assume my friends will. We are not all the same.
I am Autism.

I will scream when you cut my hair, take away my puzzle pieces and turn off Baby Einstein.
Sometimes you may leave a room and I won't notice.
Sometimes I will...and proceed to tear it apart until you return.
I am Autism.

You will get dirty looks from strangers who think I am just a bad kid having a meltdown and
you stink as a parent.
Go ahead..give them a dirty look back...I'm too busy having a meltdown to notice.
I am Autism.

I will eat bananas on Monday.
But not on Tuesday.
I may try the juice you give me...
but only if its red...
and in a green cup...
or I may just throw the darn thing down and fuss.
I am Autism.

I may sleep great, but  my friends may not.
Potty training may be a fantasy...
Simple errands may drive my mommy insane...
I am Autism.

But despite all that...
I am a child, and "A Person is a Person, No Matter How Small"
As Dr Seuss says (and I like Dr Seuss.)
I do love you, I do need you, and I do miss you when you're gone.
I may not run and hug you (or I may!) and I may not say your name,
but you know I'm in here, waiting for you to help me come out.

And I know you love me more than I will ever know.
I know it by hugs, kisses, and that we try it all again the next day.

We'll try therapies, we'll try games, toys, books--everything "THEY" say to do.
I'll try it all with you Mommy, because I know you know,
I am Autism.

And that is okay!
~~~~~~~~~~~~~

Mommy here now...

I am 110% thankfully every day for my life. Eli is extremely high functioning and I remind myself that is a huge gift. He is not dying, he does not need surgeries or meds, and he DOES hug me, love me and look at me.

But some days those blessings are a curse. How can a child who can name colors, not say Mommy? How can he not call my name, his dad's or his brother's? How can we do a puzzle in peace, but when we go to the store we MUST go get a banana so he can hold it through the entire store? Why are some of the simplest tasks the hardest, but then the next day they'll be a breeze? How do you make sure your other more 'typical' child (with issues of his own) is given the same attention as his Autistic brother?

People have asked me, are you sure you're done having kids? When I say yes, and they ask why, I reply, "I have one son with sensory issues and one with Autism". They often say, "so?"

Obviously those people have never spent any reasonable amount of time dealing with even a high functioning Autistic child. They have never had to wonder, will I be able to potty train my child? Will he function okay in school? Will he be able to work one day? Those questions don't go through most people's minds because at first glance, Eli is adorable, he says colors and shapes and he (most of the time) listens to simple commands.

But for the good days there are bad, and sometimes it makes me think. I know I do the best I can, and I have faith he will continue to improve. But the downside of him being high functioning, is it's easy to forget that we STILL need to "fight" for him to continue to grow..it's easy to become complacent. Going to the grocery store, park, bank or what not should NOT be a drama..but it is...and until the day it isn't...I will keep working...fighting for the 'real' Eli to keep coming out.

I hope this makes you think again about any Autistic children (or any special needs) children you may know. Please don't ever judge these families until you have walked a mile in their shoes. And just because it LOOKS like a mom may have it all under control...it could be an act... maybe you can just lend a hand...hold a diaper bag...make a dinner...do SOMETHING for a mom who needs a helping hand.

Thanks for letting me vent my friends! :)
~~Amy

Eli's Story

I thought I would take this opportunity to tell my son's story. Of course it is not complete, but hopefully will explain where we are right now.

Eli was born Jan. 23, 2008 (a very strategically planned winter baby--I was NOT evacuating 9 mos pregnant again!) and a welcome addition to our family that also includes big brother Harrison, now age 4. The pregnancy was your typical normal pregnancy and his birth was actually enjoyable, so different from Harrison's very traumatic, long, nearly ending in C-Section, birth.

Eli hit all his developmental milestones just fine, give or take a few weeks, until around 14 mos. He had a few words at 12 months including mama, daddy, kit-kat (cat), milk, more and he also signed more and all done. He was breastfeed until 11 mos, so he never even got a bottle really until 12 mos, so he was late getting off the bottle. He started milk and gluten at 12 mos (we have Celiac Disease in our family so I was hesitant when to start wheat.) and seemed to be fine. Meanwhile his brother was complaining of tummy aches and his own (undiagnosed) sensory issues were still being dealt with.

We noticed around 14-16 mos that Eli had stopped saying the words he WAS saying, stopped signing and wasn't picking up NEW words. He also was suddenly not eating ANYTHING. I mean virtually nothing. I found this very odd because up until 14-16 mos, he ate EVERYTHING I put in front of him and I loved it because Harrison was SUCH a picky eater.

So at his 18 mo visit I addressed my concerns with his pediatrician and for once she didn't blow me off. Having taught Head Start and worked in Early Intervention, I knew what I had to do. I called Early Steps, Louisiana's early intervention service for children under age 3 and scheduled a screening/eval. As I suspected he tested about 6-8 mos behind on his language, slightly behind on social/emotional and slightly behind on fine motor. He also failed the autism screening.

Now, granted the 'cut off' score for the autism screening was 20 and he got 23, but still. It was enough to warrant an evaluation. Of course, Early Steps does not actually COVER the cost of diagnosis and I was advised by a few people to just let it be and let him get the speech and OT Early Steps was suggesting.

But do I normally just do what people say? Not so much.

I knew from my years of teaching that if there was even the slightest chance he DID have autism, we needed to know now and get therapy started immediately. So I did some digging and found a developmental pediatrician, the fantastic Dr. Susan Fielkow at Ochsner and scheduled an eval.

Dr. Fielkow is great and doesn't really do 'scores' on young children, which I appreciate, because someone needs to really look at the whole child to see what's going on. Eli did receive a diagnosis of autism, albeit mild.  Now this is where most people think I'm crazy or a hypochondriac looking for sympathy! They say, "but he looks you in the eye!" "He hugs you!"

Yes he does. He looks ME in the eye and he will look some strangers in the eye. And he hugs ME on HIS terms. Can I pick him up on my own and get snuggles? No, not usually. That usually sets him off. He will play games like Peek a Boo and other baby games, but that's the point, he's behind. If he's hungry, I wouldn't know other than knowing his cries because I am his mother. He does not take my hand and lead me to the fridge, or say hungry, or eat. (Although he IS making strides and does now stand in the kitchen and fuss.)

So yes, at first glance, he looks totally 'normal'...whatever that means anymore. His stims are fewer and farer between since starting therapy and they are not very noticeable--mostly visual stimming with a toy or an inanimate object. Lots of vocal stimming also, whining, crying, strange noises but little real language. He can usually be easily diverted from his repetitions and stimming with some major gross motor pressure, flips and games. He is currently obsessed with circles and loves everything circle! He is a sensory seeker so he loves the wild tossing, flipping and other fun things an OT would do :)

My son has autism. Many children do and there are tons of myths surrounding it. I encourage you to never judge that someone is making something up, or that their child does or doesn't have a certain special need. The faces of autism are drastically different but still adorable and deserving of a chance.

What are we doing for Eli?

At the moment, once a week speech therapy, occupational therapy and special instruction. We're looking into applying for a pilot program for autism therapy through Early Steps because we cannot at this point afford the ABA therapy that would benefit him.

He has also begun the gluten free diet. This is a no brainer due to me having Celiac Disease and Harrison being gluten sensitive. It remains to be seen does Eli REALLY have autism or does he have severe Celiac Disease showing as symptoms of Autism? It doesn't really matter because the treatment is the same for him, Gluten Free diet and therapies.

A recent study in Pediatrics showed that children of mothers with Celiac may be 3 times more likely to have Autism. This does not surprise me at all. The statistics speak for themselves...1 in 150 have Autism, 1 in 133 have Celiac. Do the math.

Many children are helped by the GFCF diet. Some are not. But I feel it is an easy, (mostly) harmless way to help your child. Never start the GFCF diet without professional guidance. Some autistic children are SO picky about food that if you went cold turkey they literally would dehydrate and starve themselves. Go slowly and seek help through professional organizations and your doctor/nutritionist.

My advice for parents who suspect a problem? Don't take no for an answer. Trust your gut. Maybe you're wrong and your kid is just fine. Wouldn't you rather look stupid then wait and find out later there WAS something wrong and you could have helped? You always have the final say in your child's health. Do you want to delay or not do vaccinations? Then do your research and speak your mind. (For the record we do not do shots for personal religious reasons, and Eli still has autism.)

Do you want to try the GFCF diet? Do your research and try it! Do you want to try other biomedical techniques? Again, great, do your OWN research and see what you can do. You are the authority on your child and you know what's normal and not normal for them! I personally vote for trying just about anything once to see if it will help!

I can tell you by now I know what sets Eli off and what makes his symptoms worse. Don't be afraid to be an advocate for your child. No one else will be.

We paid (or will pay) about 1000 dollars for Eli's diagnosis. It was worth every penny. It set my mind at ease, let me know what we were up against and gave me a professional to help give me guidance. So, no Eli is not your 'typical autistic child' (again, whatever THAT is supposed to mean.) but he is who he is and we'll help him learn to be the best he can be.

My child may have autism but autism does not have my child.

Please feel free to share your stories of autism and how you are coping!!

~~Amy