Attention Shoppers: We lost the LOVEY!!!

Xavi always sleeps with his lovey!

Xavier's lovey is gone! He ALWAYS has his little blue doggy head blanket and we somehow lost it.  I know we left the house to grocery shop with it, but we didn't have it when we returned.

I ran back to the store and was looking under cars in the parking lot, asked at the customer service counter, went up and down the aisles, but no luck.  I left my name and number with them so we'll see if it turns up.

When I got home from looking at the store my husband came over quickly and looked me up and down to see if I had it.  And when he saw I didn't he said, "this is a sad sad day in the Myles house."  Xavi is asleep without it right now so we'll see.  Hopefully I won't be up all night! He carries is everywhere, feels on it all day long, chews on it, cuddles with it, covers his head with it when he sleeps... sigh...

Echolalia

A symptom of many kids with Autism is echolalia.  It was the only way my son used to verbalize.  He just repeated everything back to us.  It often helped him to process what was being said.  But from the age of 2 to about 2 1/2 that was all he did.

If you asked "Did you have a good night sleep?" his answer was "Did you have a good night sleep?"

It was especially frustrating when asking what he wanted to eat.  "What do you want for lunch?" and he responded "what do you want for lunch?"

Then if you tried to find out if he liked it and said "Is it yummy?" you guessed it, his response was "Is it yummy?"

Now that he is 3 it is not nearly as bad.  In fact, most of the time he just has what is called delayed echolalia. He repeats phrases he has learned later on.  Which is actually pretty funny. When from the playroom out of nowhere you hear "What the heck is going on here?" "Don't go in that area!"  and my personal favorite "The suspense is killing me."  Most of the time they are completely out of context.  And most of the time they are things I have said, or he has learned from TV (basically Wonder Pets).  But I know there are reasons.  It mostly has to do with processing.

The only real negative now is when people give him weird looks.  I struggle with if I should explain, or just let them think he just repeats stuff.  And other kids ask him often why he repeats.  Which, he doesn't understand, just repeats back!  So I know it doesn't hurt his feelings, just mine.  One of those things I have to accept and get over.  I am just too protective, and think I probably always will be...

Juggling working from home and kids! Ahh!!!

I recently read a great article about balancing working from home and the kids.  I could not agree more with so many of the points! Here are just a few quick tidbits of my thoughts on the balance.

• Realistic Expectations: Love the visual of the mom with the slippers on the international call while the kids quietly play.  Not an option in my house!  There are times, mom of the year, that I have had to lock myself in the bathroom while calling a client because I just need 5 minutes and the boys are yelling and playing too loud.

(It doesn't work like this at my house!)

• Setting Work Hours: I train others moms and this is always number 1 in my training. You can have all the goals, plans, and determination in the world, but if you don't take action, you will get nowhere.  Treat your work as a business, not a hobby.  Don't just dabble in your work, work it!

• Souse Support: If your spouse is not on board, not behind you in what you're doing, it's not going to work. Period.

• It's Worth It: So true!  Being able to stay home has been a blessing.  We have gotten out of debt and I can stay home and get my son the care and therapy he needs. 

What's the alternative to setting some serious hours aside and having your kids do their thing for a few hours a day, or having to ignore them a little?  Going out of the house to work for 8 hours a day.  No question in my mind...

My desk actually does look like this!!!

Bad News About Jaylen's Eyesight

Quick history of Jaylen's eyes:

• We thought he had a lazy eye at 6 months, but really had severe myopia (nearsightedness)
• At 12 months he was put under anathesia so they could examine his eyes because they thought he Glaucoma and might be losing his eyesight, but he was ok
  
• At 18 months his eyes were still getting worse and we knew he would need glasses
  
• At 2 his eyes were doing ok and he wore glasses all day everyday
• At 2 1/2 nothing had changed, we thought we were in the clear

Unfortunately, now at 3, his eye doctor is very concerned.  His eyesight has gotten worse again, and he says there is severe optic nerve issues in his right eye.  There is a lot of pressure building (a sign of Glaucoma).  He may lose sight in that eye. We go back in 3 months and he may get an eye patch so they can at least get his left eye to stop getting worse.

My poor baby, he just can't catch a break...

I love this song!

This is so meaningful for me.  The words are just perfect.

The Day You Are Told Something is Wrong

I am an active member on several social forums of moms of kids with Autism.  And just met another mom who was told the news I remember hearing so well.  What a crushing day.

We knew, deep down inside, we knew something wasn't right.  But we chalked it up to speech.  He had constant ear infections, had tubes put it, developed a blood clot and had his tubes redone.  But then his hearing test came back fine.  So we had to rule out just hearing and speech.

His first eval was done at about 16 months.  A day I will never forget.  The way they broke it to us, the tears welling up in my eyes.  The tears started pouring as I looked down at my happy little baby playing with toys.  He didn't know.  There was something wrong inside him and it would affect his whole life.  He was so innocent.  It wasn't fair. I am starting to cry right now just remembering it.

As usual, Gerald was there to support me.  Guaranteed me we would get him the help he needed.

It didn't change my baby.  He was still the same kid, just now had a label.  And now he has changed!  The results Jaylen has had are amazing!

Our Christmas Pictures!

Isn't just so frustrating to get the kids to smile and pose???  Well, we got a few good ones and here they are!

 

My favorite book on Autism

If you know someone with Autism, or someone who cares for someone on the spectrum you need to read this book for them. It will give you a much better understanding of the disorder.  It is a quick, easy read. It changed my perception of my son and what he goes through on a daily basis.  Our whole family struggles, but he struggles the most.  And I need to keep that and the word PATIENCE in the forefront of my mind everyday.

Ten Things Every Child With Autism Wishes You Knew by: Ellen Notbohm

1. I am first and foremost a child
2. My sensory perceptions are disordered
3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to)
   
4. I am a concrete thinker. This means I interpret language very literally
5. Please be patient with my limited vocabulary
6. Because language is so difficult for me, I am very visually oriented
7. Please focus and build on what I can do rather than what I can't do
8. Help me with social interactions
9. Try to identify what triggers my meltdowns
10. If you are a family member, please love me unconditionally

Just typing those bring me to tears.  My little guy just wants me, and everyone around him to know these things. It is so true.

And I WILL love him unconditionally, everyday, for the rest of my life.

Holidays and Sensory Overload

Children with Autism often have sensory issues.  Jaylen gets sensory overload often, mostly when a change in our routine occurs or something exciting happens.  Whenever crazy Aunt D comes over, pretty much daily, singing at the top of her lungs, he gets all our of whack!  Crazy as it is, he is very happy, and they love each other so much, so it's worth it.

Two of Jaylen's biggest sensory issues at the moment are water, well that's always been one, and wanting to squeeze in tight places.  He likes the weight of things on him.  As many of you probably know, that is why they make weighted blankets.  He likes a lot of blankets at night, and is always squeezing into tiny places in our house.

As you can see here, he squished himself into a tini crate!

Water play at our Children's Museum

The holidays pack in that extra bit of insanity with the decorations, lights, Santa sightings, extra visitors, and visits out, the presents, the shopping, the baking, the excitement at school, the sugar, the TV specials... I could go on and on but you get the point.  Jaylen will be doing way more stimming (repetitive actions) this holiday season for sure!  This is why so many of my special needs mom friends dread the holidays.

No matter what, I love the holidays, everything about it, and will try to make sure Jaylen can stay calm and enjoy himself without too many time outs...

No more rituals/routines?

Jaylen's new teachers finally saw the real him yesterday!  It all started when his teacher brought the coats to the kids, rather then have them go get them, uh-oh.  After that, everything went wrong.  He was throwing tantrum after tantrum.

Her and I talked and she said he needs to be able to adjust.  He needs to have the ability to accept change and be more spur of the moment; which is not Jaylen.  But maybe I allow too much of that.  My husband thinks so, and my sister is always saying if she does one thing not according to his "plan" it is all over.  So we'll try it.

Since school yesterday I have been less routine.  There are the littlest rituals we do I hardly even notice.  Like me starting to unwrap his juice box straw, then giving it back for him to finish, we have to do it that way.  Or him always turning off lights, the TV, shutting the door, etc.  We have to count 5 blankets at night as I tuck him in.  We have to look at the clock before starting any new activity, and I mean ANY activity, a meal, bed, get dressed, watch a show, etc.

Needless to say, it has been rough.  Many tantrums and tears.  I told the teacher and she said give it a week.  I asked which was worse, him having so many OCD things or him being upset all the time.  Not that I mind him being upset, but I just want what's best for him, obviously.  She said we check back in a week and see how he is progressing and we'll go from there...

*****UPDATE: This post is over a year old now on February 13, 2011.  His teacher was right.  As much as I worried that it would physically and mentally hurt his little brain to get rid of some of those tendencies, it didn't.  He did really well letting go of so many of those rituals.  He still has plenty of OCD tendencies, but overall things are very different in this area.  He can adjust and it makes those invisible special needs even more invisible.  He can fit right in.  Looking back at this post I remember how sad and angry I was over this, but I am so glad I didn't fight it.  I know this is not the case for all ASD children, but for us it worked!*****