Blabbing Away - Speech Shocker

  Wow!  What can Harli Belle Say.... Just about anything that is 2-5 words!   OVER NIGHT  this girl just decided she was going to start using 2-3 word phrases.  We have had this goal in speech therapy since June19.  Here we are end of February20 and my girl is repeating every 2-3 word phrase she hears.  She has been doing this consistently for about 2 weeks now.  In Harli time we know this is now a habit that will stick. 

Harli is writing her name

Baby wizard is sending mommy a flower

  She is also responding very well to commands that are 5 words phrases.  The ones she's is used to hearing are the 5 word phrases she uses now. 

"Have a good day"
"Where did it go? "
"Nigh nigh Daddy,  I love you"
"Mama hugs,  nose (Eskimo kiss), I love you"        <3Best bed time love ever<3

Harli Belle ABC'S

  Today though.... Let me tell you something.  I was not ready for this one.  I have wanted Harli to know her name forever.  She's never said it.  She's never repeated it.  Today...Monday morning... Harli Belle repeated her name after I showed her a piece of paper with her name on it.   The Big deal though is she has consistently done it all day.  I wrote a not to her teacher that we learned this today,  and she is working with Harli Belle on her name.  I can't even.  I'm so proud. 

 Check the video below for ultimate cuteness - Harli Belle says her name! 

Sensory Life

Hi everyone!  Happy New Year!  I'm sorry I've kinda ghosted over the last few months.  I hit a rough patch in my life and with those comes writers block.  We've been through a lot of things I want to share,  but couldn't sit down and put pen to paper so to speak.  Part of the reason I understand my child so well,  is because I experience a lot of things that she does in regards to sensory overload and anxiety.  I lost my emotional support animal in July and quite frankly been living on auto pilot to avoid dealing with myself. 

So let's talk sensory disorder.  Since Harli Belle is still non verbal when it comes useful information we are still left guessing why she's presenting symptoms.  But what do symptoms look like?  They look like selective solid foods at 3, they look like an imagination hard at work with jumping,  flapping and running room to room screaming.  Looks like a gymnast deep in thought trying to master the balance beam on tippy toes. It's constant high pitched noises while spinning in circles. It's sticking a finger in my face from the time she opens her eyes,  until I cave in and give her the damn band aid (100 in a week). 

While the symptoms listed above may sound like typical toddler behavior,  it's not when done in excess to the extreme.  We don't spin in circles 1-3 times just to fall down... We spin until we can't stand,  and while stumbling to stand still try to spin.  Tip toe walking works against all the therapy I spent straightening her legs, after doctors ignored me and wanted to wait until her bones were hard before they considered physical therapy or corrective surgery. And the high pitched noises..... Don't need an explanation!

We call these moments "stimming",  because she is literally over stimulated by something as simple as the wrong fabric I chose to put her in that day,  or noises around that she doesn't like,  but can't verbalize. 

For Easter we did an all sensory basket with major success,  specially with outside of the house activities. However, now we are back to dead of winter in Ohio.  Too cold to play in the snow when we get it,  so the sensory toys don't do much being stuck in the house.  Harli Belle craves outdoors,  she doesn't care what the weather is doing because she can't regulate her own body temperature yet. So, Father Christmas, what do we ask you for in way of presents this year?  She has a million toys she doesn't play with but can't let go?  We can't just keep buying fidget toys, but therapy toys are expensive.

Keeping in mind the success we experienced with the sensory toys we got her for her birthday, we decided to break the bank and get her what she needs.  My dad was in the same position as myself and had no clue what to get her.  He finally breaks and requests my assistance in buying Xmas for her.... And now finally the point I was getting to with this article.  She has been home with me for 2 full weeks.  I have implemented a therapy schedule with her new goodies,  and I can't remember 2 days in a row that she was ever this calm.  We've had exactly one day where she cried a few times..... And to be honest I was in the same boat,  I was people'd out,  wanted my own food on my own couch in peace and quiet. So home we went to decompress. 

Now what are these big ticket items that make all our lives a little easier? 

Weighted Blankets - wow all the sizes, colors, material and weights they come in!  We started with the lap blanket for budget reasons.  It was still big enough for her to sleep under,  but made car travel or movie time much easier and calmer.  The only roadblock we experienced was the day of down time we always had with laundry day.  There's no quick way to dry a weighted blanket as they have to lay flat to dry,  so we upgraded to a twin size blanket slightly heavier for the next couple of years.



  

How to choose:

Weighted Compression Vest - bring on the calm!  Within 10 seconds of being in her vest,  little miss Harli Belle is a whole new child.  It stops the pacing,  or spinning in circles that she's compelled to do until she physically can't anymore. Instead of laying all over the therapy waiting room floor,  or jumping from furniture to furniture she's able to sit and play a game/color. This also means mommy can complete housework quicker!   It is only effective for about half an hour before she starts to stimm and then we have to take it off.

Silishape Sensory Circles - with Harli Belle starting school in November we had new set of challenges we had to face.  Sitting still is not something Harli is capable of longer than 2 minutes.  Her biggest struggle was sitting on the carpet circles for story time.  We purchased a set of these gel textured pads for practice sitting still and help with toe walking.  With how light and versatile these are we were able to bring them to Georgia with us for Thanksgiving.  Who says therapy can't be fun?

River Stone's and Balance Balls - ok with Harli Belles ball obsession the balance balls were a no brainer. The success we had with silishape circles helped us decide the money they were asking for was worth it.... And boy were we right!  My little wanna be gymnast is blowing our mind with the balance and steadiness these are providing.  Our house may look like a colorful jungle of hot lava for floors,  but I don't hear my little slamming into walls anymore either. 

 

Bouncing Unicorn - during early intervention therapy we worked on building a routine for Harli Belle that would allow her to get pent up energy out first thing in the morning.  Stimming tends to be worse in the morning and we talked about heavy lifting/safe jumping when we noticed it coming on. She did well with heavy lifting until she ran out of things to lift and push.  The play shopping cart wasn't strong enough to hold all the weight she needed.  However, The bouncing ball and unicorn have been a great way to redirect stimming activities.  We have made this the first activity in the morning to help prevent stimming before it starts. 

Crash Pad and Life Size Bear - while we purchased the 5x5 ft crash pad,  the 6ft bear was given to us.  Harli Belle has ALWAYS jumped off furniture.  From the minute she learned how to walk she's been running and jumping.  For obvious reasons jumping off her bed when she was tired absolutely was not working for me. No matter what I did to control this,  she would do it as soon as I was out of eye sight.  We had no problem dropping the big bucks on this for safety reasons.   She loves it more then anything else and I'm sleeping better at night. She's no longer jumping off couches or diving into her 3ft ball pit. 

All in all she's doing incredibly well at school and therapy.  It's mind blowing to her therapist and myself how much progress she has made in 6 months.  We didn't expect to be here for another year from now.  Her speech development is taking off like a rocket. Because she's able to communicate through words or pictures she has much fewer meltdowns and great pride in herself.  I was terrified of school starting for many reasons, mostly I was just sick at the thought of bullies.  I was 100% against giving up nap time for afternoon class because Harli set her own sleep schedule at 6 weeks old.  I quickly realized all my fears were unfounded and Harli Belle is excelling more at home from her 4 day a week school schedule.  She was ready,  I wasn't!  She continues to make me proud every day with her progress, imagination,  kisses (yes we do that now thanks to my sister)  and who she is over all.  Autism isn't the worst thing a child can be diagnosed with,  it just requires extra dedication and understanding. 

Sensory Play and Summer Fun

Last summer we did quite a bit for the older kids and by the end of summer I was spending a lot of time in the car with Harli Belle.  Most of the outdoor activities had Harli in a meltdown within half an hour of arriving.  She wanted to explore every light,  sound and texture she encountered.  But she was only 33 inches tall and too small to enjoy any of the activities.  Most places we chose had a toddler area,  but she wanted the big adventures of the huge playground.  Not a slide as short as she was. 

The heat became too much for both of us,  because now we were trying to explain "no" to a very angry toddler.  Which always led to a meltdown and running away.  Looking at her point of view,  it had to be confusing because at home we encourage her to try new things,  and praise her when she accomplished something,  but here are other adults stopping her at every chance.  So to the air conditioned car we went. 

We still had the indoor playground we could visit.  They allowed Harli on anything she wanted as long as I was there to supervise.   It was very convenient and let us practice climbing safely.  It was important for us to encourage stairs because Harli was extremely bow legged at the shins and was very clumsy.  Then right when then weather turned cold the place closes down forever. 

I was pretty heartbroken to be honest.  I wanted to buy it and fix all the issues to reopen just so my baby had a place to play and grow.  I still want to but it's not in the cards.

This summer life was different.  We had a diagnosis,  we had therapy to look forward to and we were figuring it all out.   I hit the books hard.... Figuratively.  I googled a ton of sensory play ideas,  what therapy techniques worked that were also fun.  I pinned 100 activities and began to piece them together for activities that would help Harli Belle without her even knowing it.  

During story time Harli began to show me that she knew her colors by pointing to them as we read them.  Her first blow up pool popped the top ring,  but would stay up for a good hour.  So I squeezed non toxic finger paint onto paper plates,  hung large white paper over the edges and put her inside. 

She had paint brushes,  bubble wrap and paper towels to try different textures with.  I gave her 5 minutes to explore and then started asking her to "show mommy this color". She had no idea she was learning colors,  but she learned all 7 colors. 

When she began to identify her animals she showed particularl interest in sea creatures.  Which just made me as bubbly as could be,  because I love ocean themes.  Since her communication started to improve, with speech and talking cards,  her pica has gotten a lot better as well.   I've read a million articles on water beads and have been dying to get some.  However you dont dare buy a toddler with pica anything she might consume,  no matter how  non toxic it is. 

The time has finally come that I trust her enough to make the purchase.  I don't know who's more excited at this point.  So we go crazy with them for a day.  Sorting,  dumping,  searching and feeling.  We can't stop,  the whole family.   So it was time,  I threw the sand out of her sand/water table and lugged it upstairs.  I dump about half the balls in there,  grab a bunch of her sea creatures and start asking her to find them "under the water".  She's over the moon with all the activities she can do with one simple toy.

 

I am absolutely blown away at the progress she is making this summer.  She's requesting things she wants,  she's gaining strong vocabulary,  meltdowns have been shorter and less frequent.  We've started potty training and consistently used the potty 4 days in a row.  Of course there are accidents in between,  but she's doing great.   

The pride she has in herself is what provokes the most emotional responses from me.   I'm so proud of her and so proud that she can feel pride and use that a fuel to try hard.  She's already figured that part out.  She's not a quitter and as stubborn as that can make her,  I want her to keep that forever.  It will be her guiding star in life. 

We Put The Icky in Picky Eater

When it comes to being a picky eater I thought there was no possible way anyone could ever top my habits.  Food touches..... Welp that section isn't getting near my mouth.  Spaghetti with sauce..... No thank you.  That's not a color I like...... Ok I'll give it a lick,  nope can't do it.  That smells funny.... Definitely not try that.  Well now I have a picky one of my own and she puts me to shame. 

For as long as I wanted children I knew I wanted to breastfeed.  I hoped with everything in me that my little would latch and there wouldn't be any medical reasons not to.  I gave birth at a hospital who heavily promotes nursing so as soon as little miss Harli Belle made her debut they threw her on my chest and there she stayed until she began to root.  She latches right away and nursed for 45 minutes straight.   I couldn't have been more proud and excited. 

I went back to work when Harli was 4 months old.  The day I went back to work was the day she decided that she would not take a bottle.   1000 nipples and systems later,  freshly pumped or heated breast milk was not going near her if it wasn't coming directly from mom.   This is about the time people started telling me that she will eat when she's hungry.   So I tested this theory,  I lasted 8 hours before I felt like the world's worst mom and nursed her for 2 hours straight. 

At 5 months we started infant oatmeal and rice cereal.  She did great with both.  I was able to go to work and not worry that she was going 4 hours between feedings.  We transitioned to stage 1 and 2 baby food rather easily.  She had 3 servings a day while nursing between. 

At about 10 months old we tried stage 3 food.  The kind with chunks in them.  This is when all hell broke loose.  She could not stand the texture and threw up after gagging herself on the first bite.  She stopped eating oatmeal,  but would still eat the rice cereal and stage 1&2 foods. 

Harli self weened at 13 months old.  I wasn't emotionally ready to handle this,  but I was excited that she was ready to start being a big girl.  I bought all the baby snacks and toddler foods I could find.  She did great with the snacks,  but wouldn't even taste the foods.  I continued to feed her the puree food so I knew she was getting all of the servings she needed. 

Vitamin D milk became the new comfort after she stopped nursing.  By the time she turned 1 and a half I had began giving her a plate of what we were eating at every meal.  I never forced her to eat,  but she didn't get her puree until we were finished.  She never ate more than a bite or 2. I began researching how to get her to eat and tried a million things.  Nothing really worked.  I tried letting her feed me or a doll as experts suggest,  I ended up with filthy floors.  I tried letting her feed herself and ended up giving 3 baths a day to a hungry baby. This is also about the time she developed pica. 

Pica is where you eat or crave non edible substances.  It goes beyond a typical toddler putting things in her mouth.  I had a baby who CRAVED cat litter.  I spent 3 months playing referee just trying to keep her out of the littler box.  She would try anything I put inside of her mesh food feeder.  Steak,  chicken,  potatoes you name it she loved it.  The second I took it out of the food feeder she would melt down and refuse to try. Do you know how maddening it is to have a child prefer eating grass over pie?

Summer rolled around and we planted a garden. When the snap peas and tomatoes came in Harli Belle discovered that fresh fruits and vegetables were delicious.  She would snack on any fruit or vegetables I brought home as long as it wasn't cooked. She would devour a tomato in under 3 minutes. Finally we are getting somewhere right?!  Wrong!  I still couldn't get her to eat anything with protein in it unless it was puree. 

We are now 2 1/2 still being fed puree pouches as primary meals.  And by fed I mean I dip the spoon into the bowl and feed her.   She does not feed herself.  We get about 3 bites in before she tries finger painting the ceiling with her spoon.  I've read that children with failure to thrive have been told to let baby eat anything they want,  even if it junk food.   So I thought ok let's try cake and cookies,  because who doesn't like that?  Harli Belle,  Harli Belle is who doesn't like cake and cookies. 

When turning down a long drive because it interferes with harlis schedule,  I've been told to just stop at McDonald's and get her a happy meal,  it won't hurt once in a while.   Well no kidding it won't hurt,  but try telling Harli that.  She won't eat more than half a chicken nugget. I've heard C'mon mom just let her have the pudding,  ok here Harli have some pudding..... She runs away. 

This is one of my biggest worries about her starting preschool.  She doesn't eat.  I don't want to stop giving her the puree food because she will starve herself.  Habits don't break easy,  with autism you're in a whole new league of stubborn.  If we stop the puree food now,  then I fear she won't go back after a couple days of trying to break the habit.  Meal times are never easy in our house,  it's a constant struggle,  but it can't last forever right?

Bragging Over Gabbing

I started asking for speech therapy when Little Miss Harli Belle was 18 months old.  I was concerned that she had maybe 5 words she would randomly use. There was no consistency with words, not were used properly.  Mama could mean bath, milk, hot, cold and the list goes on. I did not hear my baby girl call me mama on purpose until she was almost 2 years old. At our 18 month wellness visit my pediatrician heard my concerns but advised on the wait and see method. I thought to myself "ok this is probably one of those freaking out mom moments that I rarely have"

At our 2 year wellness check up it was quite obvious we were delayed in speech,  social development and food intake.  After a longer discussion we decided that an autism evaluation was needed at this point.   Due to speech being part 1 of the 3 areas tested for we again delayed a local recommendation. 

While waiting to begin speech therapy I talked to a few friends and family members who happen to be teachers,  a couple actually have a special education degree.   I fell down the rabbit hole on Pinterest and started a talking board at home.  We used pictures of things Harli uses everyday,  and a few of her favorite things.   We pulled a card everytime she did the action. 

It's been about 6 weeks since we started speech therapy.  Like all new things with toddlers I knew the first visit or two would be less productive and more about learning what techniques would work best for Harli Belle.  Miss Rachel loved our talking board idea and took it a step further.  Harli now places the card in our hand and hears the word.   This teaches her how to ask for something,  as well as hearing the word.

This was not an easy transition.  In the past I was so excited that the words were coming or the cards were working that she got her way.  I love that we are now teaching her to ask rather than take what she wants. Right now she's little and cute so strangers don't mind that she runs up and steals a ball.   While this is polite and an excellent example of sharing,  we have to try and turn outings into lessons which is not always productive due to over simulation. 

Over the last week and a half I have been blown away at the progress in Harli Belles speech.  6 weeks ago she could not retain more than 10 words at a time.  As she learned one she forgot one. She did not group words together at all.  Today Harli Belle has about 30 words that she uses consistently. She can grab her diaper bag,  my keys and say "go bye bye". She's repeating sounds and tones that she hears from us or tv.  She can identify and point to images or colors in her books.  She will make the sounds of an animal that she sees on tv or in books.   This is progress I certainly didn't expect to see so soon.  

She earned a gold Star ⭐ A+ today at our speech visit. Miss Rachel expressed this is the transformation we want to see.  Our transition times are shorter, our attention span in longer and our routine has been established. I'm so very proud of her efforts and results! And most importantly she's rightfully proud of herself! 

Let's Talk Vacationing

A long running joke in America is that women can't pack light.  I always took pride in being the exception to that rule.   I could pack 1 back back for a 5 day trip.  Fast forward 10 years to when Harli Belle was a baby.   Car was loaded and packed full for the days away.  I took a crib,  high chair,  food,  breast feeding supplies and snacks.  All of it was necessary and expected.   I was so ready to get back to a time when I could pack light.   I avoided over night trips and vacations at all costs. 

I knew I couldn't keep doing this and we promised the older kids we would try and take a trip this summer.   So, after planning and research we decided kalahari would be ideal.   All you really needed was swim suits right?!   Wrong.  Harli Belle has always had insomnia.  We worked really hard and developed a bed time routine that works. One consistent factor is leaving her alone to fall asleep.  So my biggest worry about 3 days at a water park was not sun burns or drowning,  it was sleep deprivation.  I packed an entire duffle bag just for night time routine.  

5 people for 3 days away and we had 9 bags!  I couldn't see out of my rear window but I was ready to get away from daily stresses. 

 We get there the first day and check in went rather  smoothly.  We get all 3 kids upstairs and organized.  (Because I'm one of those people who use hotel drawers).  I need accessibility with Harli Belle.  We get everyone changed and head down to the pool.  Kids are ready to play but I still have to move the car out of temporary parking.   I send them on there way and head off to get a locker and move the car while dad takes the kids to play.   I get back and finally get to enjoy some play time before dinner.   I knew the first night would go fine for Harli Belle and sleep because she was exhausted.  She passed out on me like she used to as a tiny babe. It brought a sense of peace to me,  because every night since she's been in her own room I have had to fight the urge to let her cuddle me until she fell asleep. 

Day 2 rolls around and Hunter wakes up early with us.  We head down and play until close to lunch time when dad and sis joined us.   We take the kids out to eat and to my surprise no meltdowns during dinner.  Harli Belle even ate a bunch of her brothers fettuccine Alfredo.  

Since she refused a nap on day 2 I thought bed time would go ok again.  

You see this is where it all went wrong!  The thing is hotels don't have Netflix or any streaming capability what so ever..... So we did not have our wind down shows.  We had Willy Wonka. This DID NOT go over well at all. She didn't go down easy, not at all.  We spent an hour playing hot lava with couch cushions until she literally ends up crashing around 930. The rest of the family came up around 10 and we all fell asleep pretty quickly.

 In  my deepest sleep...... I feel a tiny Harli hand on my cheek with a voice saying "awww" "Awww".  I'm thinking to myself aww baby cuddles, but man am I tired, So I peep an eye open and see its 3 am.  Oh no child it is not time to get up!  So I say " Ok baby let's go back to your bed".  I change her diaper,  refill her milk and lay down with her.  She polished off her milk and it was on like donkey Kong!  She spent the next 6 hours running around the hotel room telling me to shhhh.

We finished day 3 with a few meltdowns over lines for the slides and lack of sleep,  but the smile on my face is not going away.   I'm so proud of her for trying all of the big scary slides.  She learned how to keep herself above water and no longer requires me to hold her up.   She had one slight hesitation on a tube slide,  tried it anyways and went right back up the stairs to try again. 

I may not be in the pack light stage yet,  but now I know travel is possible again.   We just need a bedroom for Harli Belle.  We can go to Georgia for thanksgiving this year and stay with family to avoid insomnia meltdowns.  I escaped my every day stress and got a few days of fun in.  The best part was seeing how happy the kids were. 

I'm An Autism Mom

I'm an autism mom....
I'm not more of a mom or less of a mom than any other mom. 
I'm just a different mom,  a creative thinking mom.
I don't have professional pictures of my baby because it's traumatic for her. 

I've skipped countless events because my baby wasn't feeling well.
No she was not sick in the typical way one first thinks,  but mentally.
I have no problem sitting in the car with the ac running,  killing my gas,  because the rest of my family deserves fun too.
I can recognize when my non verbal little needs to leave the park, because she just can't handle her excitement.
We aren't leaving because she's being punished,  we are leaving to bring her back to center.
I've put away my paint brushes and sewing machine,  and replaced them with laminating and Velcro. 
I may never hear the words "I love you mommy" But I can see it in her eyes. 
I have her trust,  in a world too large I don't leave her side. 
I am her role model,  and I know this because she wants to do everything I do.
Dishes take longer and I often repeat a chore twice,  but she's mimicking and needs encouraged. 
I'm an autism mom
Who's never rested
Always on alert
Absolutely in love with my perfect daughter!