He loves men's diving - who knew!

We switched the TV from The Disney Chanel to the Olympics tonight after dinner. We thought Max would have a fit, as he usually does if the TV gets switched from what he's watching. Instead, his reaction was hilarious. He got so excited watching the men's synchronized diving. He would get very upset when they would switch to scoring or a commercial!

And a random picture of Max eating an ice cream cone. With no hands... cause this kiddo is afraid of getting his hands sticky?!? Ha! Doubtful.

Practicing for Lunch

In just over a month, Piper will be a big first grader. She's most excited about going to school all day so she can have two recesses! I'm least excited about figuring out what to send her for lunch! (They don't have a hot lunch program at her school - everyone brings theirs from home.)

She won't eat a sandwich. Or leftovers. We eat out a lot for lunch while running errands. So when trying to think about what she will eat for lunch, all I could come up with is soup or plain noodles - like spaghetti or ramen. She does like her snacks, too. So to avoid being the awesome mom who sends a complete lunch of snacks, we went shopping for a lunch bag and accessories. Our solution - the Thermos Funtainer Food Jar and Fit & Fresh Little Dipper Container (love this one - it has a removable ice pack in the lid, with a dip compartment!).
So we gave it a try today - yep, we practiced school lunch. Soup in the funtainer - check. Carrots and ranch in the Dipper - check. A drink and a couple of snacks on the side - check.

This may actually work!
{I'm hoping peer pressure gets her eating sandwiches by the end of the year.}

Dr. Durham and the M-CHAT: It's a definite 'maybe'

So I took Max to our pediatrician's office this morning to see what he thinks about all this autism stuff, and to see if I am in denial, or if I am even going to the right person for a second opinion next month. Because seriously, after watching Max like a hawk this week, I am more and more convinced he was just having a bad day on Monday. And because I was wanting the SLP to know how desperate I was needing speech therapy for Max, I probably told her about more difficult behaviors without telling her about all the social and wonderful things about him. I didn't realize we were being evaluated for autism. I would have answered a little more thoughtfully.

First, I have to say, in the last few weeks Max has started making more consonant sounds, like whee, vee, and f,f,f's. Yesterday we were at the store and he started saying muh muh muh - a first for the m sound!!! Maybe a 'mama' is on it's way soon!!!
Then, last night, Grandma came to babysit. When we got home, she commented how cute it was that he said Piper's name all evening. I said, "What do mean? He hasn't said 'uppuh' in weeks if not months." She said they had been playing hide and seek and he would call her over and over. So I asked him, "Where's Piper?" AND HE POINTED TO HER. He has never pointed, ever (which is a huge 'at risk' behavior for autism). And he said dada, I thought. My mom assured me I was not listening and didn't hear him correctly, that he had said something more like Piper. I didn't hear it. But then, this morning, I got him out of bed and took him into the living room where Piper had slept the night before and her sleeping bag was still there. He thought she was in it, and jumped on it saying 'bappa'. He was really saying her name! He just says dada so much I wasn't listening to his slight change in sounds! Thank you grandma for listening!

So anyway, back to our appt this morning. To make a long story short, he had me fill out the M-CHAT (Modified Checklist for Autism in Toddlers) form. After looking it over, he agreed that Max does have signs of autism, and is maybe on the low end of the spectrum. But since many Ds kiddos have similar behaviors, it's harder to tell, as he's told me before. He suggested I get an evaluation with his partner, Dr. Samson-Fang, up at the PCMC Ds Clinic. He was happy to hear that I was a step ahead of him and have an appointment already scheduled with her.


I told him I didn't care so much about the label, the thing that I've been most stressing over, is the 'what if Max regresses!' He said that he didn't think Max would regress, even if he does have ASD, because of his age and how mild he would be on the spectrum. However, I'm taking that with a grain of salt after reading on the internet about other families experiences - ha! Several moms on the Ds-ASD facebook group said their kiddos began speaking and then stopped when the autism 'set in'. But, I don't know how severe their kids are on the spectrum, so again, I have to not worry that that would be our experience.
So there we are. I am feeling much better.


One more thing... autism is just a label. It doesn't change who Max is. And if he is on the spectrum, it would be on the low end. So why do I care or need a second opinion? Two reasons. A) he can get more therapies with a dual diagnosis (so it might be beneficial) And with that, his therapy may take a different direction. B) with a dual diagnosis, he might be seen as more of a challenge in school, and it may be harder to fight for inclusion (so it may not be beneficial). Along with addressing any possible regression, I just want more clarification as to where we stand and which direction we're headed :)

And because I hate posts without pictures, here are a couple crappy cell phone pics from this morning on our drive home. There were lots of deer in the cemetery we passed, including a big buck with huge antlers!

I know there have been some mom's asking about 'markers' for autism, so here is the M-CHAT form and how I answered the questions for Max. BUT, if you want to answer the questions for your kiddo, and have it scored immediately, go to this awesome website: https://m-chat.org/
The best thing about it, is if you have a question about the question, before scoring, it will ask you another 3-5 questions to clarify your answer. I actually put a couple of question marks on the form at the doctors office today because I wasn't sure how to answer. Durham told me this test is for typical 18-24 month toddlers, so it doesn't take into account the Ds part. My score came back "at risk for autism". But again, many kids with Ds have many of these behaviors without being on the spectrum, so again, take it with a grain of salt.

Responses indicating at risk behavior are marked with an asterisk *

Question 1.
Does your child enjoy being swung, bounced on your knee, etc.?
 You Answered: Yes

Question 2.
Does your child take an interest in other children?
 You Answered: Yes

Question 3.
Does your child like climbing on things, such as up stairs?
 You Answered: Yes

Question 4.
Does your child enjoy playing peek-a-boo/hide-and-seek?
 You Answered: Yes

Question 5.
Does your child ever pretend, for example, to talk on the phone or take care of dolls, or pretend other things?
 You Answered: Yes

*Question 6.
Does your child ever use his/her index finger to point, to ask for something?
 You Answered: No

*Question 7.
Does your child ever use his/her index finger to point, to indicate interest in something?
 You Answered: No

Question 8.
Can your child play properly with small toys (e.g. cars or blocks) without just mouthing, fiddling, or dropping them?
 You Answered: Yes

*Question 9.
Does your child ever bring objects over to you (parent) to show you something?
 You Answered: No

Question 10.
Does your child look you in the eye for more than a second or two?
 You Answered: Yes

*Question 11.
Does your child ever seem oversensitive to noise? (e.g., plugging ears)
 You Answered: Yes

Question 12.
Does your child smile in response to your face or your smile?
 You Answered: Yes

Question 13.
Does your child imitate you? (e.g., you make a face-will your child imitate it?)
 You Answered: Yes

Question 14.
Does your child respond to his/her name when you call?
 You Answered: Yes

*Question 15.
If you point at a toy across the room, does your child look at it?
 You Answered: No

Question 16.
Does your child walk?
 You Answered: Yes

*Question 17.
Does your child look at things you are looking at?
 You Answered: No

Question 18.
Does your child make unusual finger movements near his/her face?
 You Answered: No

Question 19.
Does your child try to attract your attention to his/her own activity?
 You Answered: Yes

Question 20.
Have you ever wondered if your child is deaf?
 You Answered: No

*Question 21.
Does your child understand what people say?
 You Answered: No

Question 22.
Does your child sometimes stare at nothing or wander with no purpose?
 You Answered: No

*Question 23.
Does your child look at your face to check your reaction when faced with something unfamiliar?
 You Answered: No

Max has Autism?

Monday was our appointment at Shriner's for Max's speech evaluation.

I was beyond excited. Communication has always been his biggest delay. Private speech therapy is horribly expensive and our insurance doesn't cover it. So we've been relying on early intervention and preschool, which isn't nearly enough. I began suspecting there is more to Max's speech delay than just his Ds. Maybe apraxia? I was actually kind of looking forward to an explanation and maybe a secondary diagnosis that would be covered by insurance (which I have since learned may be a futile attempt - most insurance covers very little speech therapy, if any - most things are excluded, including apraxia).

We met with Dr. Barnett for an hour. She asked lots of questions. Max was strapped in his stroller most of the time so he wouldn't tornado the room while we talked (she had shelves with books and toys on them - I didn't dare let him out unsupervised to eat them). She asked lots of questions about his speech (or lack thereof), his ability to understand words, his signing, his general behavior, etc., etc. The whole time he was acting very shy, not totally his norm. He wouldn't look at her, or me. He kept giving his squishy face, eyes scrunched up. Then he would put his hands up in front of his face. I think this really concerned her. She gave him a sucker to watch how he used his tongue to lick it. She dabbed it on each side of his mouth. He could easily move his tongue sideways and lick the spot she was touching (eyes still squished shut so he wouldn't have to look at her). She touched his top lip. It literally took him several tries to figure out how to move his tongue to reach up there. He was able to do it once. Very interesting. 

She told me that she sees kids (she's been there for years) every day with multiple issues. Shriner's is an orthopedic hospital - you have to be an ortho patient before they see you for other things, like speech therapy, so she's scene a lot of kids with multiple diagnoses. She then told me that a lot of doctors are tending to label kids who don't speak by age 3 as autistic. But she tries to do just the opposite. She doesn't like to label kids.

Then she said, "I think I know what's going on here." I was fully expecting her to tell me she suspected he had apraxia of speech. Nope. 

Autism.........

Then she got down on the floor and stacked blocks while Max knocked them over, while I was in shock and quite frankly, trying not to cry. I'm not sure really why it hit me so hard. I know he has a lot of autistic characteristics. But many kiddos with Ds do. He's just so social (except he was the complete opposite at this particular appointment!). Immediately I was exhausted by the thought of Max never growing out of his running phase, or throwing phase, or .... phase. And if he does, will he regress back into them? Or regress out of his adorable cuddly giggly self? He was still the same adorable little guy he was that morning, but it seemed a big chunk of his future just became much more unknown and more challenging.

She told me that before we can even get started on the speech part of speech therapy, we have to get Max to sit and focus and be able to take directions (which he doesn't at all at this point). So for the next month we are working on some things at home. Using a PECS schedule and doing some activities while sitting at a small table. Learning to follow simple direction, focus and follow through while playing, instead of randomly going from activity to activity, throwing and eating everything as he goes :)

I'll admit, I've gone though a myriad of emotions over the last few days. When it comes down to it, the label does not matter. He is still the same Max who desperately needs speech therapy. It does bring more fears & what ifs. I fear the possible regression. And more meltdowns over frustrations - him not me ;)

And then as I scour the internet for info on the dual diagnosis, I still can't get over how social he is. There is no way he is autistic. But then I took the kids to the aquarium today and wanted to pull my hair out. He is text book autistic. Yeah, I'm on a roller coaster. Acceptance/Denial. I'm blaming his more challenging behaviors on autism today. Does it really matter? It shouldn't. He is the freaking cutest kid ever! But it does. But I'm not sure why. Plus, a speech pathologist isn't really the one to diagnosis this, right?

So I'm getting a second opinion - August 21st.

{BTW, I did ask about apraxia, but because Max only says one word, she said it's too early to tell, although he does show signs of it...} And I can't wait until our next appointment with her (in September) - hoping that Max is back to his typical self and she tells me she clearly made a mistake and jumped the gun on his dx.

My cuties...

Watch for the distress at the end (the 1:43 mark) when the bins get out of line... perfectly normal, right? haha

Because this post isn't long enough, I'll keep going (at least I put some pictures and video in it)...

I posted on facebook, and had a couple of people want to know what the 'key' was as to why Dr Barnett thought Max had autism. Frankly, I was in too much shock to ask. So it was something in the answers to her questions, and thinking about it more, I'm guessing it had a lot to do with the way Max avoided looking at her, even though I told her this wasn't his normal behavior. Our pediatrician has asked about Max's autistic behaviors, but also said some kids with Ds have some of those types of behaviors, so it doesn't necessarily mean they have autism. So he never said specifically said that he thought Max had autism, but now I'm wondering if he was waiting until Max gets a little older before addressing it more. (Just got an appt with him for Friday to discuss it.) Looking back over early intervention, I was told that Max was the most 'unfocused' patient Sue had ever worked with... hmmm.

Whether or not he actually has autism, is really yet to be determined. But this is what we do know:
He has Down syndrome
He has a repaired AV canal defect
He has pulmonary hypertension
He is 3 years old
He has sleep apnea
He needs oxygen at night (via tent)
His tonsils and adenoids have been removed
He may have asthma
He is a runner and escape artist
His greatest delay is in speech/communication
He may have apraxia
He says one word - Daddy
He stims by way of rocking
He has auditory sensory issues
He does a lot of hand flapping when excited
He doesn't yet follow simple directions
He never crawled on all fours, but walked at the age of 2
He no longer wears orthotics
He knows his name, but won't always look when called
He knows about 20 signs, but never initiates communication (he signs milk when you give him milk, but won't ask for milk using a sign)
He makes lots of throaty/nasally noises
He makes great eye contact with his family (except for his uncles with gruff voices), but is sometimes shy around new people
He is super cuddly
He is a thrower
He does not point to things
He does not know any body part - does not point to nose, eyes, etc
He has no food/texture aversions
He must line up bread sticks horizontally before picking them up to eat them
He likes interacting with other kids, trying to be part of the group
He prefers structure (I think), but doesn't flip out if there is change
He has passed every hearing test and did not need tubes put in his ears
He doesn't like more than one type of food on his high chair tray at a time
He doesn't like food and drink on his tray at the same time - one will get thrown
He bites occasionally
He is a loader/unloader (dumps toy bins over, then puts toys back in, then repeats)
He is super giggly
He LOVES tv, especially Signing Time, but doesn't sit for more than a few minutes at a time to watch, but cries if you turn it off
He HATES having his hair cut
He used to say 'uppuh' for 'Piper', but hasn't in the last couple of months
He just recently starting saying a few more consonants than d, b & p
He chews everything
He eats paper constantly
He is a climber
He is happy to play alone, but loves being with people, too
He loves books, especially to eat
His favorite toy is his Fisher-Price car ramp
He overheats easily
He loves water/swimming
He gives tight hugs
He always has his mouth partly open, unless he is chewing on something
He drools a lot
He still has a little reflux
He adores his sister
He loves music and dancing
He seems to like pre-school, but runs to me excited, when I arrive to pick him up
He HATES having his diaper changed, and it often takes 2 of us to keep his hands out of a poopy one
He loves chasing type games
He can do actions to Itsy Bitsy Spider
He likes to make stuffed animals 'kiss'
He usually goes to sleep without rocking, just laying him in his crib
He still naps at least 2-3 hours in the afternoon (heavenly!)
He sleeps about 10-11 hours a night
His favorite food is french fries
He loves the iPad


From http://www.kennedykrieger.org/patient-care/outpatient-programs/down_syndrome_autism_spectrum_disorders:
The children we have seen at Kennedy Krieger Institute who have DS-ASD present symptoms in several different ways, which we have separated into two general groups:

Group One

Children in this first group appear to display "atypical" behaviors early. During infancy or toddler years you may see:

• Repetitive motor behaviors (fingers in mouth, hand flapping) Max does handflapping
• Fascination with and staring at lights, ceiling fans or fingers - Max did this as a baby
• Extreme food refusal - when not in the mood, but usually a great eater
• Receptive language problems (poor understanding and use of gestures) possibly giving the appearance that the child does not hear - totally Max
• Spoken language may be highly repetitive or absent - absent (other than Daddy), does say da da da repetitively

Along with these behaviors, other medical conditions may also be present including seizures, dysfunctional swallow, nystagmus (a constant movement of the eyes), or severe hypotonia (low muscle tone) with a delay in motor skills.

If your child with Down syndrome is young, you may see only one or a few of the behaviors listed above. This does not mean your child will necessarily progress to have autistic spectrum disorder. It does mean that they should be monitored closely and may benefit from receiving different intervention services (such as sensory integration) and teaching strategies (such as visual communication strategies or discrete trial teaching) to promote learning.

Group Two

A second group of children are usually older. This group of children experience a dramatic loss (or plateauing) in their acquisition and use of language and social-attending skills. This developmental regression may be followed by excessive irritability, anxiety and the onset of repetitive behaviors. This situation is most often reported by parents to occur following an otherwise "typical" course of early development for a child with Down syndrome. According to parents, this regression most often occurs between ages three to seven years.

The medical concerns and strategies for these two groups may be different. There is not enough information available to know at this time. However, regardless of how or when ASD is first discovered, children with DS-ASD have similar educational and behavioral needs once they are identified.

 Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include:

• Unusual response to sensations (especially sounds, lights, touch or pain), - sounds for Max
• Food refusal (preferred textures or tastes), - nope
• Unusual play with toys and other objects, maybe?
• Difficulty with changes in routine or familiar surroundings, - nope
• Little or no meaningful communication, totally Max
• Disruptive behaviors (aggression, throwing tantrums or extreme non-compliance), diaper changing is a headbutting challenge
• Hyperactivity, short attention and impulsivity, sometimes
• Self-injurious behavior (skin picking, head hitting or banging, eye-poking or biting), - nope
• Sleep disturbances, - yes, but better since T&A surgery
• History of developmental regression (especially language and social skills). not yet

And from http://ds-asd-connection.org/fact_sheet.html:

Your child with Down syndrome may have an autism spectrum disorder if he or she: 

• Does not orient to people (for example, often does not respond when you call his/her name) Max often doesn't respond

• Stops using speech, signs, or other means of communication - never started

• Seems happiest playing alone - no

• Lacks imaginative play, prefers repetitive play with objects - yes?

• Shows more interest in objects than people - no

• Eats only a small selection of foods and resists new foods - no

• Has unusual responses to pain, sound, light, or touch - certain sounds

• Rarely includes other people in his/her interests - no, he likes people around

• Rarely shows interest in what other people are doing - no, he likes to be involved

• Has great difficulty with transitions - no

• Works best with established structure and routines - not necessarily 

• Has difficulty understanding gestures like pointing - yes

• Doesn’t seem to automatically smile back at you when you smile at him/her - no - he is super smiley

Many of these behaviors are normal for children with Down syndrome at certain points of development. Also, a child with Down syndrome may experience relatively normal development but then regress by developing these behaviors between the ages of three and seven. When one or two of these behaviors become predictable, extreme, or resistant to change, your child may benefit from a thorough evaluation for autistic spectrum disorders performed by a professional who is experienced in working with children with Down syndrome.

---------------

So, looking at the first set of criteria, Max looks like he is on the spectrum. This last set, not so much. Yep, we'll be getting a second opinion.

Sorry for the lengthy post. Part of why I wrote some of these things out is for when I get questioned later on. The ST asked me quite a few questions I had to stop and think about. Like does Max understand what a picture is... uh??? He likes looking at picture books. Does he know it's a picture of something that is actually a real object? I dunno. Does he understand the word no or just your tone? Uh, I dunno. I'm suppose to put together the PECS schedule to show him that pictures have meaning. We used the word 'heat' instead of 'no' and he responded based on tone. Because he doesn't communicate really at all, it was hard to answer some of the questions. I'll be taking my answers above with me to our appointment next month ;)

Whew, I'm done.

The Fam

When Steve's brother, Dave, was in town for the 4th, he wanted to get a group family picture. Mark's friend, Weston, was kind of enough to come snap these for us (I was prepared to sit everyone on the couch and get out the remote!).

I think they turned out pretty well, all things considered. Some had to color coordinate out of a suitcase and a quick trip to Old Navy. Max didn't have a meltdown. He certainly wasn't smiling, but he wasn't crying either :)

SLC at Night

So Steve took Piper camping with the scouts this afternoon. I tried to think of something fun for Max & I to do, but it was raining, and our Discovery Gateway pass just expired. So we called Grandma and met her for dinner. Afterward, we stopped back home for my camera and went for a drive with the windows rolled down. It was heavenly, after the 100+ degree weather we've been having. It was cloudy, a bit rainy, and only about 75 degrees - aahhhh. Max loved waving his arm out the window.

We ended up driving around downtown, up by the capital building. My intent was to get above the city a little and get some good storm cloud pictures. But most of the angry clouds had blown over by the time we got there.

The capital building was just starting to light up against the gray sky at dusk.

Random picture through the windshield, driving, not looking through the camera.

We made our way up behind the capital, but as you can see, the clouds were heading out.

On our way back home, we drove by the temple (about 6 times) taking random shots out the window at different stop lights.

  

And another random shot just pointing and clicking as we drove back home.

Finally, back home in the driveway.
Yeah Mom, real fun. Get me out of the car, please!

Friday Photo Dump

I rarely take pictures with my cell phone. And then even rarer, do I download them... But recently, I decided I might as well, if I don't have another camera with me, even if my cell phone takes kinda crappy out of focus pictures! Is that why people love Instagram? So they look like they are suppose to be oddly colored and blurry? Really haven't been able to get into the whole Instagram thing.
So here are a few from the past month or two that I finally downloaded...

Max's new thing... helping at the grocery store. He loves to throw everything out of the cart as I put it in. I actually can't believe we haven't had more broken eggs, etc. And when we get to the cashier, he loves to be a big helper and hand everything he can to the checker. There's even one or two who know us and wait for him to start handing them things before they unload the cart.

Check out the size 22 shoe at the orthotist's office! We had to refit Max's orthotics because they were making red marks on his feet. But then, we had our appointment at Shriner's and.... NO MORE ORTHOTICS!!! They said he was doing fine and didn't need them. Yay!!! AND... we get to start speech therapy there next week. I am beyond excited!!!!!
And a couple pics from the library.

Mommy / daughter date with friends. Watching Tangled at Thanksgiving Point. We had about 7 moms and 9 daughters from the neighborhood go with us. So fun. I'm not sure the girls actually watched the movie... they were too busy dancing.

Snowbird Park - love the swings there! Not to mention that it's about 20 degrees cooler up there.

Our A/C went out a few weeks back (turned out it was actually just a clogged filter problem - oops). So we escaped the heat in the house and camped out in a tent in the back yard.

And a playdate at the Thanksgiving Point Children's Garden.

Crayons - Food or Art Supply?

Both!

I was in the kitchen earlier today and came out to Max coloring the white storage bench with a blue crayon.

At first glance, I was actually kind of pleased. Usually he just eats crayons. He doesn't really ever color on paper. So I thought, "Yay. He's actually coloring, not just eating them." Then I looked closer - nope - he was eating them, too. Oh well.

When he moved on to the wall, I took the crayon away ;)

Never too many cousins

Steve's brother and his family were visiting from Georgia. So we had lots of cousin time. And yes, Piper was in tears when they left.
Dinner at Mark & Amanda's...

Max spent much of his time throwing everyone's shoes down the stairs. {Piper is on the stairs - note her 'long' hair.}

4th of July BBQ & fireworks...

  
Someone stole my Diet Coke... hmmm. {Note the hair here, two days later. Yep - she got tired of it tangling and me brushing it, so we cut it all off! I liked it better long. Sigh. But she loves it.}

I love that Max wanted to be a part of this... and didn't run off in the opposite direction!

Piper brought out her butterflies...