Therapeutic Benefits of Music Exploration

Ari got some fun new musical instruments for her birthday and I have a “Music” category on my home-school preschool plans, so we did a music exploration session this morning with “Yankee Doodle Dandy” because it’s also President’s Day, thus I decided we’d take a patriotic route with it.

There are LOTS of therapeutic, learning, and developmental benefits from incorporating music into a child’s day. Using music and movement is part of my therapeutic plan to help Caleb with his Apraxia of Speech. Today, though, we just explored music and instruments. Just by playing with a super affordable Melissa and Doug music set,  we worked on all of these things PLUS some:

  • studies have shown that exposure to music in childhood can accelerate brain development
  • integration of different areas of development by making the body and mind work together
  • helps children learn new sounds and words
  • builds motor skills
  • strengthens memory abilities

I love it for our intents and purposes because we’re always working on:

  • imitating actions and vocalizations
  • different kinds of auditory sensory input
  • cooperative play

Caleb is really good at imitating actions now. Imitating actions is important because you imitate what you see before you imitate what you hear. Imitating gross motor and fine motor actions is an excellent precursor to imitating vocalizations and verbalizations. The love of music he’s acquired has also helped him be more spontaneous in his language use as he spontaneously comes up to us and does the motions and words to “Head, Shoulders, Knees, and Toes.” Another benefit of music for Caleb? It’s calming. When he started getting a little wild on me in the Costco checkout the other week, I distracted him with the aforementioned “Head, Shoulders, Knees, and Toes” and bought myself enough time to get out of the store calmly. When he was itty bitty and had to get shots, hearing tests, etc, YouTube videos of “Puff the Magic Dragon” saw us through.

If you’re interested, here’s some footage of our jam session this morning. We’re just getting ready for Grammy season 2032.

Ari and I have a piano duet of “Yankee Doodle” you can watch on YouTube.

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Caleb used his one-man band skills to provide the musical accompaniment to my own Yankee Doodle as well. Check out how much fun he’s having rocking out.

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 Just look at this chick!

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I know Caleb had a good time because he’s literally carried the box of instruments around the house all day with him and I randomly hear the shake of maracas coming from various rooms of my home.

Besides “Head, Shoulders, Knees, and Toes” and “Puff the Magic Dragon,” here are some of Caleb’s other favorite songs:

“One Little Finger”

“If You’re Happy and You Know it”

“Do You Like Broccoli Ice Cream?”

He also loves Christmas carols and a song from the “Build Me a Building” episode of Bubble Guppies because he likes to pretend to use a hammer and saw while he listens.

I also have made up ridiculous songs to their more popular counterparts to sing to my children throughout their little lives such as “Caleburra sits in the old oak tree” cause who’s ever seen a kookaburra sitting in a gum tree? Also, my personal favorite “AriBody” that is to be sung along to the tune of the Backstreet Boys’ “Everybody.” And let’s not forget “Do you want to go to sleep now?” that follows the tune of “Do you want to build a snowman?” which I sing pleadingly when I need them to take it down a notch or seventeen.

Rock out with your kiddos, ya’ll. It’ll be a fun time for EVERYBODY (yeah yeah).

Apraxia of Speech: Defining and Describing the Disorder

It’s Saturday night, it’s getting late (in Mom world at least), I’ve been taking care of two sick kiddos all day, but I just wanted to introduce a topic I’ll be talking about a lot coming up because it’s something we’re starting to work on everyday: Apraxia of Speech.

What is Apraxia?

It’s a motor speech disorder. What’s that? Speaking feels so natural but is actually a very intricate and complex process. A motor speech disorder means there’s difficulty with the motor planning part of moving your tongue, lips, etc. to execute the necessary sounds in the consonant-vowel combinations they need to be in to produce a target word. The words are in the child’s head, but the articulators have a hard time executing the movements to make those words.

What does Apraxia look like?

Here are some of the more common signs and symptoms:

  • delayed acquisition of speech/language milestones
  • very limited inventory of consonants or vowels a child is able to produce
  • difficulty producing multi-syllable words
  • atypical sound error substitutions and inconsistent use of those substitutions. Example: Most kids who can’t produce a /g/, substitute it with a /d/. That would be a typical substitution. If they make that /d/ instead of the /g/ every time, that’s a consistent error. If they can’t produce a /g/, but sometimes produce an /l/ or another sound or sometimes completely omit the target, those are atypical and inconsistent errors which are more concerning.
  • gap between receptive versus expressive language abilities, meaning a child can understand much more than they are able to express verbally
  • Groping: abnormal movements of the lips or tongue that make a child appear to be physically struggling to verbalize something
  • difficulties (sometimes extreme) with intelligibility

Is there a relation between Autism and Apraxia?

I am not a doctor, so I will just tell you some research statistics here. There is research that has come out in recent years that indicates a higher incidence rate of Apraxia of Speech in children with Autism Spectrum Disorder. That does not mean that having Autism means you have Apraxia or that Autism causes Apraxia. It just means that when you isolate a population of children who have Autism and another population of children who are otherwise typically developing, the group of children with Autism may have more children who have a true diagnosis of Apraxia versus the typically developing group. Dr. Cheryl Tierney, M.D. published a paper in the Journal of Developmental and Behavioral Pediatrics in 2015 that found that 64% of children who had a diagnosis of Autism Spectrum Disorder in her clinic also met the diagnostic criterion for Apraxia of Speech.

Do I have a two cents on it? You know it. I always thought….even before I zeroed in conclusively on Autism…..that Caleb may have Apraxia. He was really young and it’s so difficult to label accurately at that age, but I like to think that I am very good at my job and that I know my child very well, so it most definitely was brought up to my colleagues and his pediatrician as a possibility. Now that he is becoming more verbal on a daily basis, the fact that he is having such  a hard time coordinating that little mouth to say what I ask him to say is glaring to say the least, really.

There’s lots more I can go into about how Apraxia of Speech can be addressed therapeutically, the importance of tactile cues, etc…..but I’d be here all night and it would be overwhelming. What I would like to leave you with is the first step of what you should do if anything that you read above alerts you to red flags in your child: talk to your child’s doctor and get a script for a referral to a speech therapist. Therapeutically, for myself as a professional, it’s very important to me to determine if a child does in fact have Apraxia of Speech because whether or not it is present will absolutely dictate how we go about intervention and the order that I pick targets to work on. 

Here are some things that I WILL leave you with though!:

  • Check out some infographics and links to articles on the “Take That, Autism!” Apraxia Pinterest Board.
  • “Take That, Autism!” also has a YouTube channel now! Here are some links to a couple videos of Caleb so you can hear an example of severe apraxia. Listen for the decreased use of consonants, extreme difficulty with anything more than one syllable, limited intelligibility, etc. Some attempts sound like babble or just a vocalization as a place marker but hey…..we’re getting there. And one day, with the most intelligible speech he can muster up, Caleb’s gonna post a video on YouTube hollering “Take That, Apraxia!” Here are the links:
  • Don’t forget to follow us on Instagram @take_that_autism. Caleb has a sweet video that’s a good example of his speech abilities while he “reads” The Very Hungry Caterpillar on there.

Let me know if you have any questions! Catch me at ErinSamsell@takethatautism.org

 

 

Valentine’s Day Fine Motor and Sensory Fun

Happy Valentine’s Day, everybody! I did things for my children today that they didn’t notice such as make their homemade chocolate chip pancakes this morning into the the shape of hearts, but hey- I won’t keep score.

In the spirit of continued festive fun, we did some home-made fine motor and sensory bin activities because if you know me, you know I love a theme. Here’s what we were up to today……….

Stickers

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Fine Motor Benefits;

– practice pincer grasp

– bilateral coordination

– spatial awareness

– hand strength

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Language Benefits:

– prepositions

– noun and action vocabulary

– requesting

– descriptive vocabulary

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Water Sponges

Ok, these little gems have been around forever. They’re sponges in a disintegrating capsule that emerge into different shapes when you put them in water. *Here’s a shopping tip! These are at the Dollar Tree pretty much all the time- vehicles, animals, etc. BUT, if you shop the dollar bins at Target, they also sell them seasonally to match each holiday for just $1 also. Halloween, Valentine’s, etc. So, naturally we did Valentine’s sponges on Valentine’s Day.

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All you need to prep is a bowl of warm water (they don’t open up in cold water, p.s.). I added a couple of drops of red food dye to make the water festive.

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The sponge capsules come in different colors so you can use color vocabulary to request or identify each one before giving it to your child. Also, I like this activity for executive functioning practice because waiting for the sponges to emerge takes patience and impulse control.

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Word of caution: Your mischievous daughter may sneak attack the sponge bowl and dunk her peacock.

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A couple of minutes later, you get a dozen festive sponges! They don’t last long but will make it long enough to be bathtub toys for the evening. It’s at least worth a dollar as something new and different to do.

Tactile Sensory Bin

Benefits of Tactile Exploration:

Promotes a healthy tactile system which is necessary for…..

– feeling pain

– gauging temperature

– decreasing distractions from the environment

– playing easily with peers

– tolerating input from activities of daily living

– understanding and using new language to describe senses and feelings

Here’s How I Made My Bin:

First, I had to dye some noodles red. For that you need…..

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Food coloring and a box of pasta (I used the gluten-free box in the back of the pantry nobody ever wants to eat).

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Hydrogen Peroxide.

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Mix about 1/4 to 1/2 a cup of hydrogen peroxide in a bag with the box of pasta along with 10-20 drops of food coloring. I added all the liquid first and then the noodles, and mixed it all up by squeezing the bag around. The longer you leave the bag to mix, the more saturated your color will become. When you’re satisfied with the color, take the pasta out to dry. Don’t be like me and put it on paper towels because then the noodles just stick to the towels and you sit on your kitchen floor 30 minutes picking them off.

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I added in some other textures for us to explore. The pasta had ridges and was rough. The stones (they’re the decorative bags of aquarium or vase filling stones- $1 each) were smooth, and the candy conversation hearts were chalky.

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I also added in Valentine’s cookie cutters to mix, pour, shake, and sift the sensory contents through. Also, I felt like I needed to do something with them because instead of baking Valentine’s treats, I maybe bought Little Debbie ones instead……

*Another shopping tip: Wal-Mart always has sets of holiday cookie cutters (which you can paint with or play with play dough with if you’re like me and don’t bake) in the seasonal aisles they rotate through for $1.50. You can’t lose.

I also threw in those sponges we did.

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Ready, set, and……………..healthy sensory processing GO!

Take That, Valentine’s Day!

 

Heavy Work: WHAT it is and WHY your child needs it

“Heavy work” is kind of a buzz term in the pediatric therapy world. You’ve probably heard it a lot. You’ve probably been given handouts on it. Your friendly neighborhood OT has reviewed it with you (a dozen times if he/she is as awesome as MY friendly neighborhood OT is). But……..do you really remember what it is and why your child needs it?

If not, that’s ok. Let’s review. If you’ve never heard of it, prepare to be blown away.

Heavy work also goes with the word proprioception. Proprioception pretty much means body awareness- knowing where your body is in its environment, which is important because that’s how you navigate yourself around safely. When your child is doing heavy work activities, those activities are giving heavy resistance to their joints and muscles. When their joints and muscles get that input, it better helps them be aware of their body. Aside from being able to safely navigate through a classroom, playground equipment, your home, etc., this also is essential for things like balance and posture as well. This kind of input is also calming and can help your child’s attention span also. Socially, it also helps kids understand the concept of personal space by aiding with those body awareness abilities. Important note: this is different from vision. Some parents may confuse poor proprioceptive abilities as poor visual abilities but this it likely not the case. Call up that friendly neighborhood OT or your pediatrician if you have further questions on that 🙂 

So, why do we find that so many children with Autism have poor body awareness abilities and proprioceptive dysfunction? While exact figures vary, it is safe to say that the MAJORITY of children with Autism Spectrum Disorder have sensory processing deficits in some capacity- whether they are over responsive or under responsive to sensory input doesn’t matter. Proprioceptive dysfunction is a type of sensory processing deficit. So, it is not uncommon for professionals to treat a lot of children who need help with heavy work activities because it is an example of a sensory processing deficit, which is so extremely common in children with Autism. Another important note! Sensory Processing Disorder is NOT ADHD and it is NOT a diagnosis to be given in place of Autism Spectrum Disorder. Also, you can have Sensory Processing Disorder or sensory processing deficits WITHOUT having Autism. 

Ok, now we know the definition of heavy work, why it is important, and even why we see it so often in Autism Spectrum Disorder. Now…….what does it look like in real world terms????

Here are some examples:

Proprioceptive Avoiding Behaviors: 

– mistaken as “lazy”: may avoid “active” activities or be overly cautious during play

– avoids touch or tight clothing

– can seem uncoordinated: difficulty with stairs, for example

– may prefer quiet environments

Proprioceptive Seeking Behaviors:

– runs into people or objects

– plays roughly or seeks out “extremes”: climbing TOO high, for example

– uses a lot of pressure when touching people or things or touches people and things with extreme frequency

– difficulty understanding personal space

– chews on objects

– walks loudly (stomping)

Other signals that you may see in a child with proprioceptive deficits may include poor posture (slumping over on their desk) or difficulty with motor planning (riding a bike).

Now…..how can we address proprioceptive dysfunction? I’m so glad you asked! Remember that friendly neighborhood OT I’ve been carrying on about for the last few paragraphs? Go see her or him! Remember- I am a speech therapist, not an occupational therapist. However, I do consider myself qualified to speak on the matter of heavy work because proprioceptive sensory seeking behaviors are seen daily  in my home. “Why have my dining room chairs been pushed into various corners of the house?” Caleb needed some heavy work. “Why does he want to stand and open and close the cabinet door without plundering through the cabinet’s contents?” Cause he needed some heavy work. “What was that loud “thump” coming from the playroom?” Caleb jumping from the book-less built-in bookcase because he needed heavy work. Also, note my responses to those self-imposed questions……Caleb needed heavy work. He wasn’t being defiant. He doesn’t have parents who don’t discipline him. His sensory system is not integrated typically like yours and mine and in order for him to do all of the things expected of him in a given day, he needs proprioceptive sensory input. So, if my son jumping down your hallway in a Thor’s hammer sort-of-way is going to nudge your chotchkies off the display shelves on your wall, just don’t invite us over. We’ll meet you at the park instead.

I’m not going to make an extensive list of heavy work activities for you because I’d have to sit here all night. While the description of heavy work and proprioceptive input may seem complicated, the good news is that the solutions ARE NOT. Heavy work activities are some of the easiest and most functional activities that you could ever possibly incorporate into your daily routine with minimal effort. Click here to see my “Heavy Work” idea board on Pinterest. And also- because you know I can barely go a whole post without showing you what Caleb’s into- read about some of his favorite heavy work activities below!

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Climbing…..

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…..all of the climbable things.

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Especially up the slide. That’s one of the best!

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Is that outdoor play equipment that used to live inside my house because 18 months ago our need for heavy work was that intense? You bet. It lives outside now, like it’s supposed to. Because we’ve been working hard.

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Jumping.

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Jumping AND wrestling is an even better combination.

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Jumping to wake up sissy also counts.

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Throwing, kicking, etc.

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Running. Especially up an incline.

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Swimming. Kicking those legs against the resistance of the water? Heavy work ALL THE WAY. And you get to stay cool because heavy work breaks a sweat, ya’ll!

Before I sign off, please talk to your doctor about any concerns you have about your child regarding sensory processing abilities and any potential proprioceptive avoidance or seeking behaviors you see and ask for a referral to an occupational therapist. We want regulated, safe, and successful little ones!

This Ain’t Holland, Ya’ll

So, there’s this story that’s often told to families that compares receiving an Autism diagnosis to taking a trip to Holland when you planned your entire vacation around going to Italy. You learned Italian, got excited about the cuisine, and then when the plane lands, you walk outside and find yourself in Holland instead of Italy

Autism ain’t Holland, ya’ll.
One- let’s not compare Autism to a vacation. It’s a job. Lots of work. You don’t get a break when you live Autism. Two- if you went to the Italy Trip Store and they told you, “My bad, we gave your ticket away but here’s some Holland from the stock room,” it wouldn’t be such a bad deal. So you trade pasta for fish, the Coliseum for windmills, and wine for tulips. (Well, maybe that last trade sucks but you’re picking up what I’m putting down). Essentially, going to Holland instead of Italy is just doing one fun thing instead of another fun thing.
Autism isn’t fun. It doesn’t rock my socks. I don’t love it to the moon and back. I could think of 2349820420984098423 other things I’d rather do. My son, however, IS fun. He’s the cat’s pajamas. I adore his stinky self. I tell him daily he’s the most perfect son. But HE is not Autism.
I don’t agree that it is advantageous to advise parents who are receiving a new diagnosis that Autism is like going to Holland instead of Italy. With that said, I do understand and can even appreciate the sentiment behind it. Autism is not the worst thing that can happen to your child….it’s simply something different than what you thought was going to happen. There are awful, terminal things that can happen to our children. This is not like those things. I understand why this anecdote is recanted time and time again- I’ve personally heard it for years. But I also don’t want people to feel trivialized. Everything is relative. It’s ok, when you get a diagnosis, to feel upset and sad and mad about it. Just because it’s not “the worst thing that could happen” doesn’t mean you’re not allowed a minute to feel like it is.  What matters, ultimately, is where you end up. If you find acceptance and make the right steps to help your child, you’re allowed to feel however you’re going to feel along the way. Being told I’m “going to Holland instead of Italy” makes me feel like I’m being cut off in the middle of a feeling-like someone is saying “Eh eh eh eh….feel this, not that….it could be worse!.” I’m certain these are things people say when they do not have a child with Autism. You have to feel things in order to work through things.
Let’s advise parents differently. Let’s advise the truth- it’s going to be hard sometimes. It’s going to be a lot of work. But it’s going to be so rewarding to see the hard work pay off and ultimately, everyone is in fact going to be ok.
It felt like Afghanistan in the beginning. I haven’t found Holland yet but we seem to be sitting somewhere in the Florida Keys right now. A lot of days are sun-filled and fun but sometimes hurricanes still blow through. And when they do, we simply pick up the pieces, fortify the foundation, and wait for the sun to come out again.
Where are you all right now?

7 Winter Boredom Busters with Toys You Already Have

Punxsutawney Phil saw his shadow this morning and says it’s 6 more weeks of winter. Hello, cabin fever. We’ve become good friends, haven’t we? Also, the novelty of Santa’s new toys has worn off and my children’s ability to play independently for hours on end has now diminished to random half hour intervals interrupted by random laps run around my dining room table. As I type this, my daughter is quacking like a duck while wandering around with a spoon and my son is jumping from his Ninja Turtles chair, sticking the landing on the living room floor. We have a groundhog day craft planned for after nap time but you may remember that my children were less than enthusiastic the last time I tried to be festive with my Chinese New Year craft. I spent some time on Pinterest this morning finding new, creative ways to use toys we (and you) already have laying around to beat our winter boredom blues (and as backup to entertain my own children when/if my craft plans fall apart). Here’s what I found!

1) Puzzles

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We’ve done lots of peg and early jigsaw puzzles but here are some new ideas for an old classic:

– Put magnets on the backs of puzzle pieces and assemble on a baking sheet.

– Trace everyday objects onto construction paper and have your little one match the object to the outline.

– Crawl through a tunnel or wheelbarrow walk to collect the puzzle pieces and bring them back to assemble.

Check out examples here.

2. Play Dough 

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We have lots of Play Dough kits, books, tools, etc. but honestly, sometimes mama needs new stuff to do too. I can only play Play Dough barber shop SO many times, so here are some new ideas:

– Themed play dough trays with craft supplies to make monsters, bugs, robots, etc.

– Practicing pre-writing skills by drawing designs into play dough.

– Using toothpicks with play dough to build simple shapes and structures.

Check out my Play Dough Pinterest Board.

3. Cars

Car play boredom busters

Full disclosure, Caleb needs NO outside motivation to encourage him to go play with cars but here’s some fun stuff anyways:

– “Driving” cars with magnets attached to them.

– Rescuing cars in frozen ice blocks.

– Adding paper sails to cars for a wind race across the table.

Click here for links to these car activities.

4. Potato Head

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We love Potato Head so much we had to buy an extra box of random, miscellaneous pieces on ebay. Still though, sometimes my imagination bank is running low and I need ways to spice it up such as….

– Fetching potato head pieces out of sensory pins like rice, sand, pasta, and even Jello (go ahead and get messy-I have bath time suggestions coming up).

– Potato Head construction with ACTUAL potatoes and fridge veggies.

– Using the pieces on a “head” made out of play dough, kinetic sand, or snow (it IS a WINTER boredom buster!).

See more here!

5.  Blocks

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As entertaining as it is to watch the back-and-forth of Caleb building towers only to have Ari ninja her way through and demolish them, here are some other things we’re going to try!

– Wrapping blocks in foil and playing with them or building with them in a shaving cream tub.

– Building structures and patterns on top of mirrors.

– DIY blocks made from sponges we can put in the bathtub.

Check it out!

6. Crayons/Markers

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YES!!!! I needed help with this one and am most jazzed about these Pinterest finds!!!!!

– Taping markers to cars for car coloring (and we already talked about creative car play so that’s 2 birds, 1 stone).

– Coloring onto different textured surfaces such as sandpaper.

– Sitting Ari’s behind in a big ol’ cardboard box and letting her go to town coloring 360 degrees around her.

Here they are.

7. Bath Time

tub time

I mean….they’ve gotta get clean sometime, anyways, right? I need to be better about “bath for fun” instead of my current model of “bath for function” that involves a whirlwind of peach scented body wash and 1 dunk (that I don’t give any notice about) of water from a bucket. Here are some things we’ll try:

– Glow sticks in the water with the lights turned off. (Also, you’re preparing them for college with this one).

– Homemade bath tub coloring paints (however, we used to have bath crayons which generalized into regular crayons down my back hallway wall so don’t say I didn’t warn you).

– Water balloons in the tub. Everyone’s already wet anyways!

Here was my inspiration.

So, thanks a lot Phil. I hear there’s snow coming Sunday so your prediction must be right. Until next year, my friend.

What to Expect at a Developmental Assessment

Ok…..I have professional and personal insider knowledge I thought it may be helpful to share and if you’re like me and do better knowing exactly what to expect, then this article is for you. I’ll tell you what to expect from start to finish when taking your child to a developmental assessment and what to look for in a provider when selecting where to go.

Taking your child for complete developmental testing means you’re taking them to a specialist which means you’ll need a script (sometimes called a prescription or referral) from your child’s pediatrician/family doctor/PCP- whoever sees your child for well checks and sick visits. This may be the professional who suggests you take your child to a developmental specialist, or you may bring it up to them. If you encounter resistance getting the referral, stand your ground. You know your child best but if needed, ask your child’s ST/OT/PT to write a letter explaining the signs and symptoms that are being seen that warrants the referral. They’ll be happy to do that for you, I’m certain 😉

The doctor will send in the referral to the specialist’s office. Your Dr. may have one that they typically refer to, but you can also do your own research and decide where the best fit for your family is and ask for a script to be sent wherever you want. You may not hear back right away from the developmental specialist’s office (sometimes a Developmental Pediatrician, Developmental Psychologist, etc.) as they will sometimes need to send a questionnaire back to the PCP’s office for additional information. If it’s been a week since you know the referral was sent, I’d go ahead and call to at least make sure they have the script and are working on getting your child set up even if they aren’t ready to schedule yet. Remember also to ask about any authorization that is needed for insurance for your visit and I’d also call your provider directly to inquire about benefits and coverage. Remember it’s ultimately your responsibility to be diligent with anything that involves insurance. I’ve learned that the hard way!

Let’s pause and I’ll give you my tips for what to look for when finding the right developmental professional to take your child to and what questions to ask while you’re looking. Remember that some of these tips and this description of the process applies when you’re taking your child to a specialist due to concerns with Autism. There will be differences if you’re going for other reasons.

– For an Autism assessment I would suggest one of two setups:

1) a 1-appointment, multi-disciplinary team assessment

2) assessment done by one professional over the course of multiple testing sessions

This is both my personal and professional recommendation. It does not suggest that doing it another way is the wrong way. I feel that a one-time appointment that has something so important riding on it such as if your child is or is not diagnosed with a disorder, that putting all your eggs in one basket that the universe will align and your child will be unaffected by variables such as  hunger, sickness, tiredness, or general toddler tom-foolery and will be on their best behavior for an extended period of time to complete a variety of demands, is pretty unrealistic. Also, you want your assessment to be comprehensive. General developmental testing should be completed in addition to Autism-specific testing. Both of those things take hours. When’s the last time your toddler did everything you asked without hesitation for 4 hours straight? Do you think they’ed do that for someone they just met? At the end of the day, I’d go with whatever set up enabled your child to be seen over the course of multiple sessions, even if that meant sacrificing a multi-disciplinary model and only being able to see one specialist but being able to see them consistently over the course of several weeks. Children also need to be able to build rapport with someone new. When testing is completed over several sessions, you accomplish the following: 1st appointment: meet-and-greet for the child and case history intake. 2nd appointment: general developmental testing. 3rd appointment: Autism-specific testing. Sometimes, depending on the facility and insurance, you can even have a 4th appointment that the child doesn’t have to be present for to have a comprehensive one-on-one review of the results.

– Know exactly who’s doing your testing. Ask for their credentials. You have a right to do that.

– Now that you know the WHO, find out the WHAT. And I mean what assessment tool they’ll be using. It’s not as important for the general developmental testing but it matters very much for Autism specific testing. I recommend without hesitation that you absolutely take your child somewhere that the ADOS is given. The ADOS is the Autism Diagnostic Observation Scale. I’ve been to formal training sessions on the administration of this assessment and have my own copies of the scoring books- I RECOMMEND this test. Here’s why:

– There are different modules that take into account your child’s chronological age and verbal production abilities.

– It can be used for children as young as 12 months.

– It provides naturalistic opportunities for social interaction between your child and the examiner.

– Manipulatives that the test uses are engaging for children.

– It’s semi-structured…that means that some of the testing can be completed via an observation of behavior which allows our kids to simply be themselves versus having to be “on” the entire time.

– Parents can be present and their response to their child’s engagement is encouraged.

I also recommend the ADI-R (Autism Diagnostic Interview-Revised). It’s a very  comprehensive, structured interview given to parents or caregivers (it can take up to 90 minutes- I’m not kidding about the comprehensive part). I have one of those as well and think it’s a valuable assessment tool.

– Lastly, I’d recommend asking if the specialist would review any progress reports from teachers, therapists, etc. as part of the intake.

Ok, whew! Stick with me. Now let’s get back to actually getting an appointment…………..

You picked a provider, you requested a script, you know they have your script, now you get a call from their office! BUT…..it’s probably to tell you there’s one more step you have to complete before they’ll schedule you. (Sorry, guys!) You’ll be given a packet of information to fill out and mail back in and it’s possible that your appointment won’t be scheduled until they receive all of it back. Here’s what to look for in that intake packet:

– general demographic information

– medical case history information

– developmental checklists (maybe a lot of them….and they may be the same regardless of a patient’s age so don’t worry if a lot of the content isn’t applicable for your child). They may ask if you’ll have someone other than yourself fill out the developmental checklists also- a teacher, therapist, grandparent, etc. If they don’t ask that, ask for another copy and tell them you’d like to send both in. It’s helpful for your diagnostician.

– a million and a half insurance and release forms….you know the drill

I ultimately sent in 25 pages of paperwork for each of my children. I honestly appreciated their due diligence.

Ok, now you’ve signed your life away, spent $10 on postage, and……you get a call to be scheduled! It could possibly go a couple different ways- you’ll either be in their office in the next couple weeks or your appointment could be scheduled three months out. The wait lists can backup at these places sometimes. If your appointment does end up being scheduled way out, ask to be put on a cancellation list so you can be notified if something opens up sooner. Also ask what you should bring to each appointment. For example, it was helpful for my kids to have snacks and motivating toys at the intake, but those things may have had a negative impact on standardized testing days.

So, we’ve established the following:

– what to look for in a provider

– how to get a referral

– what’s expected of you before the appointment

– what to expect at the actual appointment(s)

As always, please feel free to email me at ErinSamsell@takethatautism.org if you have any questions and I’ll do my best to help you out (or at least point you in the right direction)!

The Puzzle Piece

Ya’ll know about all those “National Day of (insert random thing here)” holidays that they announce for novelty’s sake on the radio and those one-a-day calendars? Well, today happens to be National Puzzle Day.

Do you know about the puzzle piece being the recognized symbol for Autism awareness? Here’s some information about it.

– In 1999 it was adopted as the UNIVERSAL symbol for Autism Awareness.

– The puzzle pieces themselves represent the complexity of the Autism Spectrum.

– The different colors of the puzzle pieces usually seen on ribbons and logos represent the diversity of the individuals that have Autism.

A lot of agencies use the puzzle piece pattern in logos, merchandise, etc. because of all of these reasons. When I was having a graphic designed for the “Take That, Autism!” logo it was a no-brainer for me to have it include multi-colored puzzle pieces.

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In case you weren’t aware, the puzzle piece used to represent Autism isn’t received well by everyone. Some individuals argue the following:

– use of the puzzle piece can imply that individuals with Autism are confused or incomplete

– it implies that there is a missing piece when many individuals with Autism don’t feel that their lives are missing anything.

In fairness, if you go back a few decades from the 1990’s when the first puzzle piece was used to represent Autism for an Autism society in the 1960’s, it was done so with a graphic of a weeping child on top of the puzzle piece because “children with Autism are always suffering.”

I have an opinion on the debate.

I think that what the puzzle piece perhaps implied 50 years ago versus what it represents today has evolved. I feel that a puzzle piece is part of a larger unit. Each piece comes together and unites. If I look at a graphic of interlocking puzzle pieces, I feel like I’m look at a picture of unity. And I can’t argue against unity. Ever. I also hope that in 15 years, when my son sees these puzzle pieces that represent something he will have to work harder because of everyday for the rest of his life, that if I have raised him well, he will simply think, “How great that my mom worked so hard to find a group of people that could put all the pieces together for me to get me where I am today.”

Also, there are a lot of other things going on that bother me more than what a puzzle piece could or could not be interpreted as. I really feel a push for everyone to use people-first language. I had someone comment on my Facebook months and months ago, “I didn’t know you had an autistic son.” Honest reaction? I prickled. I rolled my eyes, let out a breath, and simply replied “Yes, I have a son who happens to have Autism.” I also have trouble with the emphasis of and the need to assign low, mod, high functioning levels that have inconsistent and fairly arbitrary criteria that vary from one association or governing body to the next. Lastly, I’d love for the push of using the term “pre-verbal” versus “non-verbal” in more conversations with parents of little ones. Prognosis is almost impossible to predict at the preschool age- using such definitive and severe terminology is- in all honesty- just something else for us to obsess and worry about and then we’re more likely to simply not do ANYTHING because when you have a child with special needs, you have to fight hard not to feel defeated. Let’s not feel defeated by lexicon before we ever get a chance to get off the ground. There’s a quote that I read years ago that likely is my favorite quote of all time that I think works well here:

“Everyone is a genius. But if you judge a fish on its ability to climb a tree, it will live its whole life believing it is stupid.”

– Albert Einstein

In summary, the puzzle piece for Autism has a rich history. And as with anything, it will never satisfy everyone. This mama supports the use of the puzzle piece and the ideology is currently represents, but I also respect the opinion of those that might not.

Regardless, I think we’re all really just looking forward to the day when the only puzzle pieces we really need to care about are the ones that get lost under the couch, because that will signify that we have been successful in uniting our children.

Have a good day, everybody. Do a jigsaw puzzle or two!

Chinese New Year Craft

There’s two things I love: 1) when things are festive 2) a theme. So, I love holidays with holiday themed decorations, activities, and outfits.

Today is the Chinese New Year! So, I thought we’d do an activity.

Now let’s be real- my kids didn’t know our January 1 New Year so they definitely don’t know that it’s the Chinese (or Lunar) New Year. However, daddy’s been gone all day and NO ONE HAS NAPPED, so we needed something to entertain us. I decided on a craft!

2017 is the Year of the Rooster. We may not know what New Year’s is yet but since we live on a farm- we DEFINITELY know what roosters are 😉

I decided we were going to do a simple painting activity. (Silly mama- there’s no such thing as “simple painting” by yourself with a 3 and 2 year old simultaneously!). I’m into using untraditional items to paint with to provide different sensory experiences and found an activity online where we could paint with forks to make it look like feathers, so we gave it a try.

Here’s what you need:

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– printer/painting paper

– construction paper (we painted onto the printer paper and then cut it out and attached it to construction paper for a background because printer and painting paper gets flimsy).

– googly eyes

– glue (I forgot the glue. Don’t be like me).

– washable paints (I also suggest non-toxic because as I found out, when you give a 2 year old a fork she’s used to eating with to use as a paintbrush, it’s gonna end up in her mouth at least once).

– disposable forks

I started with Caleb and showed him how to dip the fork into paint and then make strokes on the paper with it. He required a lot of hand-over-hand to complete our picture because guess why? He simply didn’t like it. He likes art, he likes crafts, but apparently he likes to eat with his forks, not paint with them. Fair enough, man.

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He hung in there and gave me a little on the paper for each color and then I released him to do what he’d been trying to do since we sat down to start painting……

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………steal all the silverware.

Now you know I don’t want to waste all that so Mr. Man just set himself up to do a functional silverware sorting task tomorrow.

And no worries because whenever Caleb doesn’t want to do something, there’s always a little sister who’s ready and willing to take his place! So, Ari and I finished it for him.

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After it dried I drew (I use that verb generously) a rooster onto the paper and cut it out. Caleb did return to help me glue the eye on and glue it to the construction paper.

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It wasn’t our most successful artistic endeavor but we did practice fine motor control, got some sensory input, and were exposed to new language and new directions to follow so I’ll take it!

Next year is the Year of the Dog. We have 4 of those. I think we can find a way to be more successful with Lunar New Year 2018 🙂

 Check out my Pinterest board for more Sensory Painting Ideas!

Ari

If you checked in yesterday, you know I introduced you to the awesome Ms. Holly. You can get a little background on my husband and I here. And of course, you get to read about Caleb alllll the time. (Especially if you guys are friends with me on my personal page on Facebook- ya’ll know I have an incessant love for my kids and my cows).

But there’s one more important person I’d like to tell you about.

Caleb’s little sister, Ari.

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Ari just turned 2 a few weeks ago. She’s a fiery red-head who loves animals, playing dress-up, building blocks, and Disney princesses. Her favorite food is macaroni and cheese and her favorite place in the entire world is at gymnastics class, which she goes to every week. A typical 2-year-old little girl.

Recently though, I had it in my head that there may be more to know about her. When I first got pregnant with Ari I wasn’t worried about her potential future development because Caleb was only 9 months old at the time and I hadn’t had concerns about Autism with him yet. Later into my pregnancy with her, those concerns about Caleb came through the back of my mind but still weren’t solidified even when she was born when Caleb was 18-months-old. When Ari was a few months old I realized exactly what we were working with and even though I knew having a sibling with Autism put her at a greater chance of having it also, I thought “she’s a girl- the incidence rate is lower in girls so I bet I won’t have to worry about Autism with her.”

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Naivety at it’s finest. Sometimes when we’re worried about something we’ll talk ourselves into things.

But I didn’t worry for a looonnggg time about her. I remember sending videos of her to people with the most beautiful and hysterical reciprocal laugh while she played in the bathtub and at 6-months old imitating some awesome consonant-vowel-consonant -vowel sound combination. So, I was certain it wasn’t ever going to be something I would have to worry about.

At her 18-month check up, however, I asked her pediatrician if he saw any signs and symptoms of Autism with her. The thing with Caleb is that his development is disordered. His expressive and receptive language skills are developing in an atypical way. And while Ari wasn’t necessarily where I expected her to be, she always ended up doing the things she was supposed to be doing, it just took her more time. She seemed to be operating more on a delay rather than a disorder. Still, the knee-jerk reaction to call it Autism because her brother had Autism was hard to fight. Her pediatrician said he didn’t see any signs and symptoms of Autism in her. He even said, “now that you bring it up and I’m looking for it in her, I still don’t see it.” Her pediatrician is amazing. We love him. But a mama with a worry is a fury to not be stopped.

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So I asked for a referral to a Developmental Pediatrician (after researching the best one I could find across two states) anyways.

I took her into North Carolina to see a Pediatric Developmental Psychologist who would test her over the course of 3 separate sessions so that whatever his conclusion ultimately was going to be, we would be able to have good faith that it was the right one.

At this point I had already decided that she probably had Autism. With her brother, once the conclusion was reached, there was never any uncertainty. If it looks like a duck, walks like a duck, and talks (or doesn’t talk) like a duck, then the duck has Autism. I will admit though that there was always enough of a sliver of doubt with Ari that I was only comfortable telling my closest of confidants I was taking her.

But that didn’t last long because in the spirit of awareness, I posted on Facebook what my concerns were and that I was taking her because I decided I had lived too much denial and seen too much denial in other people for this not to have the potential to help someone who may be going through the same thing. I don’t know if it ever did, but I hope so.

Back to her evaluation. I filled out all the preliminary paperwork as one would if they had already decided on a diagnosis (and also wrote a 3-page developmental addendum cause I’m a crazy lady) and sent it all in. We went to the first two appointments which were intake, “get-to-know-you”, and general developmental testing appointments. Then it came time for that third and final testing appointment. That was the day Ari was going to be given an Autism-specific developmental test. It was Halloween Day. I remember thinking, “today is going to be a day of tricks, not treats.”

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The morning before I left for that appointment was a hard morning for me. With Caleb, I got to get to the point of knowing and accepting Autism at my own pace because I realized it on my own. I had control because led everyone else to enlightenment about him, nobody else led me. But now I was at someone else’s mercy. All I could do was sit and wait and let someone else tell me what was going to happen. Despite whatever confidence I may have displayed about it all in person or online, that morning I sent Ms. Holly the most worried-mama texts I’ve ever sent because no matter who you are, it’s a lot to take in.

So, with a nervous pit in my stomach, we drove to North Carolina at 7 in the morning. A few hours later, testing was complete, and I asked the psychologist his preliminary thoughts on where we stood after 9 scheduled hours of appointments with him. And do you know what he said?

“She doesn’t meet the diagnostic criterion for Autism. After formal and informal assessment, my impression is that she is not on the spectrum.”

Out of all the things I prepared for, do you know that I didn’t prepare for “what if she doesn’t have Autism?”.

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So, I left feeling relieved. I felt excited, I felt at peace, but most of all- I felt so glad that we had made the decision to go to the doctor. Because do you know what would have felt worse than the worry I felt until her appointments concluded? The feeling of having ignored my gut and the guilt of having buried my head in the sand because I was embarrassed, worried, or scared of the “what-if’s?”.

I promise you all- I get it. I have a child who I was worried had Autism and did. I also have a child who I was worried had Autism and didn’t. I’ve ridden that roller coaster of emotions on loop. What I hope I accomplish by sharing our journey, however, is that you find a way not to let the worry part of things paralyze you. I’m not an Autism expert and I’m not a parenting expert. But I am available. To anyone who ever needs me to be whether it’s in a personal or professional capacity. I also have a wine fridge and a coffee pot so if needed, we can settle in and make a day of it.

Now that all of those feelings have been properly processed, I find myself having confidence in the opinions of her pediatrician and developmental expert. While she does have a language delay, I see that she imitates so much more with so much less effort than her brother. And she spontaneously has productions that are beyond where he is presently. Her sensory system is integrated, there’s an absence of stereotypical behaviors, she doesn’t have to be taught social games, she reads and reacts to our tone and facial expressions so well (which I love even when it results in a pouty face and crying breakdown like she lost her best friend when I tell her not to do something), she points and tries to comments, sings, and understands so well and so much.

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In an effort to be fully transparent, I will tell you that she did get a diagnostic code for a general neurodevelopmental delay and that it was brought to my attention that we can not conclusively rule out that prenatal events that happened to me did or did not have a developmental impact on her. One may reason that when a pregnant mother has focal seizures, grand mal seizures, a subarachnoid brain hemorrhage and hemorrhagic stroke, that the consequences may extend beyond herself. Honestly, I don’t really know. For someone who needs to know exactly what I’m working with at pretty much all times, I have done a surprisingly small amount of research into this- mainly I think, because at this point, I’m just thankful we’re both here.

So, I hope you guys don’t mind reading on how Ari’s progressing in addition to her brother. I’m pretty fond of her and think you guys will be too 🙂

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“Though she be but little, she is fierce.”

– Shakespeare