Just another Minnesota Mom blog.

Kicking Autism’s Ass Since 2010

Posted: May 12th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Day to Day, EI, Family, Feelings, FTW, Goals, Kids, Lincoln, Lincolnton and Wy, Wyatt | 5 Comments »

I kind of feel like we have been doing this for years, when in reality it’s only been a few short months.

In the past 2 weeks, it’s like we have a totally different kid.

Wyatt is engaged more than not.
He’s calling things by their names (even if it’s only the first syllabel of the word).
He’s “singing” the alphabet.
He’s pointing.
He’s pretending!

It’s just so awesome to see.

Yes, we still have a long way to go. Yes, he still has autism- that isn’t going away.

It’s just *so* encouraging to see such great progress. You get so mired in all the details of your day it’s like a slap in the face to say “This is what we are working towards and it’s happening!”

Lincoln is coming out of his shell a bit too. Today when his teacher and the speech therapist came for a home visit he met them at the door with a hug and spent a good part of the visit hanging off the speech therapist’s back (he’s really into piggy-back rides) and giggling. He’s making progress too, communicating in his own way. We are learning how to meet him at his level, which is probably the biggest obstacle! He knows just how to get what he wants, we just have to read his cues a bit better.

It’s happening!


Just when we think we’ve hit our stride…

Posted: April 25th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Feelings, Goals, Lincoln, Lincolnton and Wy, Twins, Wyatt | 2 Comments »

Today we had an appointment with our pediatrician for an “Autism Follow-up”.  At their 2 year appointment in December he had asked that we make an appointment to  touch base with him after we got all of our ducks in a row with school and services and were done with the initial testing etc.

That’s where we are and we want to keep him in the loop, so that’s what we did.  We had everything from the school forwarded to him so he could read up beforehand.

When we got there it was like he had no idea why we were there.  He had everything from the school but hadn’t read it.  Not a page.

?????

First of all, we’re moving forward with a lot of things at this moment.  A medical evaluation in a month, we are on wait lists for speech and OT evals, the boys are in school.  We live and breath their IFSP’s.

At the beginning of the meeting he seemed to be questioning whether they had autism or not.  “Language delays aren’t always autism….”  This is more than a language delay.  This is a LOSS of language combined with pretty much every other marker you can think of minus the scary tantrums.  I’m fairly certain that we’re not going to get a different answer at this point.

Now, I know we went ahead with evaluations before he gave the go ahead and I understand that he hadn’t had a chance to read the novella that had been sent over from the boys school, but you’ve got to trust that we’re not making this up.  Who would put themselves through this ringer if it weren’t real?

Anyone?

There were some good things, he has seen great things with ABA and also thinks our school district does a terrific job compared to some others he’s worked with.  We’ve got referrals for MRI’s but don’t need to be in a rush- he said we could wait until they can lay still on their own.  We may be waiting for years for that.  We know that an MRI isn’t going to change much so I’m not sure why we would do it now anyways.

We talked about their sleep habits and possible medications with the pros and cons and when they would be needed.  We’re thinking about adding a little Melatonin to the bedtime routine just to see if it makes a difference.  I know the 2-3 hours it takes them to wind down after they go to bed would be better spent sleeping. 

I think the worst part about today’s meeting was that it kind of put one more person in our path that made us question everything up to this point.  We moved out of the denial phase pretty quickly so it’s difficult to have people pull us back to that place. 

This is happening.  This is real.  We just keep moving forward, one foot in front of the other.

I’m not ready to switch docs just yet.  We won’t see him again until November and by then he should be fully aware of what’s going on so he’ll be able to see for himself.  He is a great pediatrician.  If we switched we’d just switch to Judah’s ped who is in the same practice.  Right now I’m just trying to not make any rash decisions.  Right now he’s kind of the smallest player in this whole *thing* compared to the teachers and therapists and social workers…I don’t see the point in switching  just yet.


Autism Awareness Month: Day number AWESOME!

Posted: April 20th, 2011 | Author: | Filed under: Autism | Tags: #Judahthetank, Autism, Autism Awareness Month, Birth to Three, FTW, Goals, Lincoln, Lincolnton and Wy, SAHM, Wyatt | 7 Comments »

Yesterday everyone woke up at 6am.

That might not sound early, but trust me, it’s early.

On school days I slowly roll out of bed trying not to disturb His Royal Highness Judah the Tank so I can get the coffee going before I wake up Lincoln and Wyatt at 7:00.

Yesterday it was three boys, all screaming and crying and whining and Yogidad running out the door as I tried to open my eyes and assess the situation, sans coffee.

Oh, and did I mention I was up until 1:30am nursing HRHJTT?

Yeah.

So we stumbled through the morning milk routine and slowly got breakfast going and then slowly got everyone dressed and then things started to happen.

Good things. Things that we don’t usually see in this house.

Exhibit A: Playing with a toy. Like actually taking a toy off of the toy shelf and bringing it over tot he coffee table and playing with it in the way it was intended. In this case it was the Leap Frog Cook and Play Potsy and they took the different foods out of the pot, put them back in, stirred the pot with the spoon and then put on the lid! I almost passed out from the awesomeness.

Not impressed? What about this?

Exhibit B: Lincoln dragging me by the hand to the door and putting my hand on the doorknob after I put on his coat. This might be no big thing to everyone else, but for Lincoln to drag me, to another room, to get me to do something? That’s communication folks! He knew it was almost time to go and he knew the next step was to go out the door and he knew we do that by using the doorknob. Brilliant.

Cloud. Nine.

Yesterday was a good day and today has kind of gone the same way. More playing with Potsy, this morning included Wyatt naming the veggies as he pulled them out of the pot, sure the Tomato was called “A” (he thinks it’s an apple) and the cheese is just “ch” but he’s getting it. Lincoln pulled me by the hand into the bedroom to read the alphabet to him off of a toy…this is progress!

And Judah? Well his new thing is to put his head on a pillow and “pretend” to go to sleep. Then he pops up and laughs. It’s cute, even after 10 or so times. Note to Judah: go to sleep!


What day is it again?

Posted: April 16th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Early Evaluation, Kids, Lincolnton and Wy, Mom stuff | 9 Comments »

So I’ve failed at blogging every day during Autism Awareness Month.  I don’t know what it is about setting a goal to blog for 30 days, but it seems unattainable once you start.  Now if I HADN’T set that goal…I’d probably have blogged every day and sometimes twice.  That’s just how it goes.

So I’m calling off the every day thing and we’ll see what happens from here on out.

Janine asked in my comments what some of the early signs are- what do you look for?

This is kind of tricky, because early on, so much of it is easily explained away.  Babies develop at different paces, it’s just how it is.  I think a lot of it is going with your gut.  If you start to notice these things, even if no one else seems to notice them or is worried about them, look into getting an evaluation or really stress your worries with your pediatrician. 

The Red Flags:

  • No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
  • No babbling by 12 months
  • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
  • No words by 16 months
  • No two-word meaningful phrases (without imitating or repeating) by 24 months
  • Any loss of speech or babbling or social skills at any age
    (From Autism Speaks)

For us the biggest thing was the loss of speech.  Once we were in our evaluation it because very clear that there were other things- no back and forth gestures, no pointing, showing and reaching were a few big ones.  They didn’t “play” with their toys, they carried them around.  We had smiles and babbling, we had words at one point.  Sometimes it’s just one thing on this list that makes you wonder a little bit. 

It is always worth digging into.  If your child is showing ANY of these signs you should be asking for an immediate evaluation.


Autism Awareness Month: Day 13

Posted: April 13th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Blogging, Feelings, Kids, Lincoln, Lincolnton and Wy, Mom stuff, SAHM, Wyatt | 3 Comments »

I’m guessing with our upcoming crazy schedule I will probably skip more days- and that is OK!

So, Tuesday we had our meeting at the boys school to go over their ADOS (Autism Diagnostic Observation Schedule) testing and get their new IFSP (Individualized Family Service Plan) which is basically an IEP for 2 year olds. The language of an IFSP focuses on what the family wants to see “The family would like to see Lincoln do _____.” Once they move to the 3 year class they’ll get an IEP. There was nothing new, nothing we hadn’t already heard, so it was a fairly easy meeting.

After everyone was in bed I read through both boys IFSP’s and looked at all of the things that were checked off that had them meeting the autism label and it kind of hit me. We’ve been operating under the premise that they are “high functioning” but what does that mean? No one outside of us or our family has used any label other than autism.

I know that the high and low functioning labels are not actual clinical labels. I also know that we’d all love to believe that we are dealing with something that is going to be relatively easy to keep under control.

But what if it’s not?

What if we are looking at low-functioning autism?

What does that change?

Who makes that distinction?

When is that distinction made?

I know a lot of this is wrapped up in the fact that they are only 2. I know we need to be patient and not dwell on labels. I know that those labels don’t make a difference because someone labeled low functioning may out-preform someone labeled high-functioning. I get it.

It’s difficult though. Everyone wants a label and I don’t know what to say. Everyone wants to believe they are in the best position here.

But what if we are all mistaking their happy, easy-going personalities for high-functioning?

————————————————-

So, after all of that heaviness on my brain today- I needed to do something fun, just me, out of the house and away from all of that.

So I went to a book reading/signing for Let’s Panic About Babiesby a couple of brilliant bloggers- Alice Bradley and Eden Kennedy. I got their early because all hell started to break loose after dinner and I just needed a break. I got some coffee, bought my book, found a comfy chair and started to read.

I was laughing out loud on the first page.

It was just what I needed.


Autism Awareness Month: Day 11*

Posted: April 11th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Family, Goals, Kids, Lincoln, Lincolnton and Wy, Wyatt | 6 Comments »

As I have stated before, I NEVER take the three boys alone by myself. One at a time, yes.  Two at a time…sometimes.  It depends on where we are going.  three at a time by myself?

Never.

Today my mom, my sister and I took the boys to see my Great Aunt (my Grandma’s last remaining sister).  She has never met Judah and hasn’t seen the boys in well over a year and she’s been sick and it was just all around time to go see her.  We had planned to go sometime while I was on maternity leave.  Then sometime this past winter.  Today just worked out perfectly.  The weather was nice, beautiful even.

We loaded up the boys- this is not a one man job.  We drove to the other side of the city and unloaded, corralled them into the house and tried to keep them occupied.  At first they did fairly well.  Wyatt found it very exciting to walk in circles through the kitchen and living room.  In one door, out the other, round and round he went.  Once he started getting nosy and trying to get into her medicine we had to put a stop to that.

Then he kind of lost it.

No amount of sugar-free Smarties was going to calm him down.  He was in the zone and he was headed for tantrum city.  Usually I am very open about what is going on with the boys, why they don’t talk, why they are freaking out about what seems like nothing.  Sometimes I just don’t know what to say, so I say things like “he’s really quiet” and “looks like someone needs a nap!” 

So, we high-tailed it out of there.

I think we were there for *maybe* an hour.  Probably closer to 45 minutes.  We got home and had some lunch and the melt-down continued over a juice box.  I’m beginning to see a lot of frustrations surrounding juice boxes and straws and I want to just say “no straws!” but I know it’s something they need to learn how to use.  But if it’s going to lead to a melt-down…

(How much do you avoid just to keep everyone calm and not freaking out?  Personally?  I will avoid a LOT of things to keep things quiet.)

That was the first real glimpse of a tantrum we’ve seen since the week of shrieking back in January.  I don’t know if it was all the excitement of having Grandma and Grandpa C here this weekend and being a little off on our schedule or what, but he was done.  They both went down for a nap and woke up pretty happy.  That was a good thing.  They ate dinner, had baths and as I type this they are both jumping and chattering in their cribs.

I hope this bodes well for tomorrow.

Tomorrow we have the ADOS evaluation results meeting!  We’ve been waiting for this one.

*If you are looking for day 10, well, we were pretty busy this weekend and we skipped it.


Autism Awareness Month: Day 9

Posted: April 10th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Kids, Lincoln, Lincolnton and Wy, Wyatt | 4 Comments »

*a Day late (I had it ready to go but forgot to put pics in last night)

Today the boys got new haircuts.

In an actual salon.

With pump up chairs and capes and hair dryers. Also a video of The Letter Factory playing right in front of them and suckers to keep their hands busy. But we did it, no more shaggy Bieber!

Up until today haircuts had been auntie Ryon’s domain. Both times taking place in their high chairs while eating dinner so as to keep them as distracted as possible. But we were looking pretty shaggy and Grandma C. Really wanted to get them some haircuts, so we headed out to our local kids hair cutting place to see how we fared.

I made appointments on Thursday and it sounded like their schedule was pretty wide open. We got there and it was packed. Someone had been sent home sick and they were running behind…so instead of hanging out in the waiting area with the other kids we went shopping for 20 minutes.

That was an excellent plan, I think 20 minutes of running after the boys every time they escaped to the salon floor would have been a bit much for all involved. Instead we got some fresh air and time to wind down.

Lincoln went first. He sucked on his sucker the entire time, everything was coated with sticky and hair. Nothing a few baby wipes couldn’t clean up! He wasn’t too excited about having someone touching his head, he kept reaching up with his sticky hands and pushing the stylists hands away and moving his head around but he sat still for the most part and didn’t scream or cry.

Lincoln Hair 1

Get your hands out of my hair lady!

Wyatt barely took his eyes off the screen the entire time he was getting his hair cut. He chewed his sucker and I was ready to break out sucker #2 because he finished the one he had right before she broke out the hairdryer, but it ended up being just fine. When she started the hairdryer he giggled and laughed as the warm air blew through his hair and over his neck. He loved it!

Wyatt Haircut 1
This kind of tickles!

And the finished product…

Lincoln Haircut 2
Lincoln!
Wyatt Haircut 2
Wyatt!

I can’t really tell them apart anymore…this isn’t good.

We got everyone de-stickified and headed out to lunch at Granite City and then home to put all three boys down for a nap.  When we got home Wyatt walked right into his room without even being asked!  Do you think he was tired?


Autism Awareness Month: Day 8

Posted: April 8th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Books and Reading, Wyatt | 4 Comments »

Sometimes
 Wyatt Reading Between Chairs

You need a small space
To climb into before bed
And do some reading


Autism Awareness Month: Day 7

Posted: April 7th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three, Lincoln, Lincolnton and Wy, Stuff You Need, Wyatt | 8 Comments »

Our boys are sensory seekers.
They love to touch and feel, bounce and fall, balance and slide and be tossed in the air as high as they can go.  Wyatt wraps himself up in his blanket to sleep at night as tightly as he can, Lincoln sleeps sideways in his crib at the very end so he’s scrunched up just so. 
I first heard the terms “sensory seekers” and “sensory avoiders” at a workshop I went to about a month ago.  It was kind of an A-Ha moment for me.  I always thought of sensory issues in more of the “sensory avoider” frame.  Since being introduced to this concept we have been thrust into a new way of looking at things.
Like dry noodles, beans, rice and peas.
Put them into plastic bins with a scoop and you have compact sensory experience to pull out at any moment.  Anything that feels weird that they can dig their hands into drives them to giggles.  We like to hide things in our sensory bins.  Mostly letters, of course!  It’s so simple and obvious and totally cheap- I have our OT to thank for this little gem.  Wyatt even picks every last noodle/ bean/ rice/ pea up off of his tray before we put them away.  I thought for sure this would be a huge mess but if kept to about 10 minutes it’s actually pretty engageing.
I also have a bucket of tricks that we pull out whenever we feel like we need something extra help connecting.
Pinwheels- they love it when we blow in their faces and this gives the added swirl of color
Bath sponges- we have a few different kinds that they love to touch and squish
Stretchy, rubbery, sticky orbs- I got them in the Dollar Spot at Target and they love them
Bristle Blocks- easy to build with, fun to touch and feel
Add the canvas tunnel that we pop open for them to crawl through and the Hoberman Sphere (to help with our breathing exercises) and we’re not too shabby in the sensory toys department!  Household items make really great sensory toys.
We’ve been looking into weighted blankets (I think Grandma E was thinking about making some) and I just saw a weighted Scentsy Buddy that you can get a lavendar sachet for which made me wonder if that would be good for helping them sleep…will have to look into that.
What am I missing here?  What are some cheap but useful sensory toys?


Autism Awareness Month: Day 6

Posted: April 6th, 2011 | Author: | Filed under: Autism | Tags: Alphabet, Autism, Autism Awareness Month, Birth to Three, Lincolnton and Wy, Wyatt | 1 Comment »

Wyatt loves his alphabet.

First he had A-B-C-D

Then A-B-C-D-E-F

Then the entire thing.

Then he would say letters as he saw them when we were out and about.

Then it was pulling them out of a pile in order

Now it’s noticing when he is missing one.

Wyatt with Puzzle

It’s very easy to notice one letter missing in this puzzle!

We have letters on the fridge. 

We have letters in puzzle form. 

We have 5″ stuffed felt letters that he can push around in his grocery cart.

He sure loves his letters.

We are only about a month into this alphabet obsession and seems to be constantly changing, so who knows where it’s going to end.  Right now it’s a really great way to get him talking and engaging.

He likes to play games with the letters- you say one, he says the next one.  You say the next three, he says the next 3 and so on and so forth.  Another game is running from the fridge to where ever you are with one of the letters- you tell him what the letter is and he goes to get the next one.  A great way to wear him out before bedtime.  At least I think so.

Wyatt laughing

Wyatt is a pretty happy kid.

Who happens to like letters.

And laughing and tickling of course.