autism, balance, children, early intervention, love, siblings, therapy, toddlers

Back in Business Baby

Man oh man does it feel like it’s been ages since I last let you all in on the madness that is early intervention. A lot has changed since I last wrote and that doesn’t mean there’s less on my plate.

Excuse the rambling for there will be much of it

If you’ve been following along last time Abel no longer had speech at all and his other therapies were being out on hold (PT/OT) due to insurance authorizations and what not. Yeah well, apparently they dropped the ball on doing them on time and everyone at the office was taking turns telling me different bits of inaccurate information. Well, two angry voicemails and me walking the line between persistent and all out crazy mom mode later and… WE ARE BACK IN ACTION!!

Abel’s insurance is officially changed over without a hitch and they authorized his therapies for another six months! His Occupational and Physical Therapy are both back as of this week and it feels great to put some normalcy back into our days. The cherry on top is that we now have a speech therapist who is phenomenal. At our first meeting she knew so much about just what it’ll take to get through to someone on the spectrum and has catered her plans to what Abel will want and need from his time with her. It’s in office unlike his other therapies which I know will be a pain but I’m just counting my blessings and worrying about the rest later at this point. It’s just nice to get something going in the right direction.

It is a relief to have these ladies by my side working toward a common goal but my load is far from clear. All of the DIY therapies have created a monster and I’ve fallen down the rabbit hole that is giving the kiddos a preschool-ish feel at home. There’s getting Aiven Pre-K ready and big hopes of having Abel ready enough to take on a preschool setting part time when Aiven goes off to school in the fall. We’re taking this one day at a time taking their lead on what they’re ready for. Until then my laminator and craft supplies are getting a whole lot of use lol

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autism, balance, children, early intervention, love, therapy, toddlers, Uncategorized

Just keep chugging along…

I always tell myself that I’ll post at least one piece a month but of course life has other plans. In between keeping up with the house, the therapies, and two toddlers; one can only hope for time for basic care let alone extras am I right? Haha

Abel hasn’t had consistent early intervention since the week before his birthday (2/13) and I’m trying pretty hard not to lose it these days. His wonderful Speech therapist, who came to Florida after she was displaced by the hurricane that hit Puerto Rico, decided to go back home to be with her family. The agency whom we receive his speech therapy from, has yet to provide us with a replacement therapist and doesn’t seem like they’ll be doing so for some time. The cherry on top? Abels reauthorization for treatment came and went with them putting a hold on his services. What does this mean? My sweet boy, who has been making much improvement with the consistency of his weekly visits, is waiting around. The whip creamed topping (lol) we’re switching him over to a specialty insurance that a better fit overall which has given yet another excuse for the process to move along at a snails pace.

I’m trying so hard to keep positive and pray of course. I already work with the kids on activities on my own regardless of what happens with early intervention. I guess what I’m saying is that it’s difficult being “Optimistic Kassey” when my son is missing out due to someone else not being on their A game. I will say that I’m thankful to our occupational therapist who made sure to have our new sensory diet done up beforehand and has been pretty great thus far in reassuring me. Our last speech therapist has even given me loads of advice and is just a text or call away.

How we are keeping up with the loss of therapies

In an attempt to keep things going for Abel (and keep some kind of normalcy for his sake) I’ve taken to DIYing therapy sessions myself each day. I always enjoy some one on one learning time with Aiven and Abel so this is the biggest upside to everything going on.

Physical Therapy:

For Abel’s physical therapy we work on balance and body awareness. We’ve done so using our handy dandy stability disc which is just a fancy label for an inflatable cushion that he stands on to balance and work on some strength. We also use a balance (yoga) ball, a mini trampoline that his OT left here for us, and some ankle weights. we practice going up and down the stairs and are working on walking facing forward instead of looking back for most of the walk. its all slow progress but progress nonetheless.

Occupational Therapy:

I’m a firm believer in a child learning in play and occupational therapy at this age is just that. Abel practices discriminating different shapes and where they go, experiencing different art mediums like paint/chalk/clay/crayons, he works on following simple instructions, and even gets some good old sensory stimulation with his Z-Vibe and body brush. We’ve incorporated sign language into me already explaining the steps to our many activities. The items that have been most influential have been his shape sorter, his flip race car track, the learn with me pig e bank, his building blocks, and LOTS of arts and craft supplies. Despite being hesitant he really is a trooper and goes along with even the newest of activities.

Speech Therapy:

This one has to be by far the therapy that’s given me a run for my money. When we lost our SLP we were working on our PECS system and just getting into our own rhythm of things and I really didn’t want to sabotage the progress we were already making. Do I continue making my own PECS cards? Stop the PECS altogether and just let things be? One thing was for sure, I wasn’t going to give up. After countless hours online (thanks pinterest) getting a feel for the many done up systems out there. I went with a mixture of sites to achieve a visual schedule that we could introduce while in wait. it shows our daily activities including our family outings to give Abel a sense of control and knowing what’s next. I took things a step further and have even made him color flash cards to further work on our colors. I’ve made mini food cards to even put a name to his favorite foods and snacks which will also play into his food therapy that we’ve thankfully kept going with his early interventionist.

The sites that I used were:

–If your interested in the toys/tools I’ve listed above I made an account with kit.com and although I cant figure the darn thing our I did manage to add them there. I’M always happy to give specifics on what we use and how we use them.

It has been far from easy and it feels like the last few months have been an absolute rollercoaster altogether but I’m really just glad that we do have a diagnosis that has given us so many answers on how to better care for Abel so that he can thrive and be the happy boy that he is. As long as he and Aivy are getting the love and care that they need it really is worth every bit of it.

Oh! a moment for the little victories shall we?

Can I just boast about what rock stars these kiddos are? This weekend we drove down to visit family and I cant remember either one crying even once! Just six months ago we couldn’t last thirty minutes in the car let alone a consistent three and a half hours of nothing to do but look at the cows and trees outside our window. Heck blame it on my ADHD, but I was more anxious than they were to stretch my legs and change it up. If that doesn’t validate how awesome these two are, I don’t know what does.

Strawberries make this house run like the smooth well oiled machine it surely isn’t haha. Weve finally made a break through with both Aiven and Abels eating habits and along with pretty much every other fruit in the produce section, strawberries have been our jam. They’ve gone through more cases of strawberries than I care to say but the nutrigraine era is finally past us! Next task is getting them to put down the pretzel rods haha.

Yes I’m rambling and yes I should probably be sleeping but midnight seems to be the time to get these things done when you’re days are as busy as mine. I’ll leave this here with good wishes to all and a promise to just keep chugging with more updates to come. As always, thanks for reading along.

autism, children, love, toddlers

Day For Love

Today I officially have a two year old! Oh and what a wondrous two years it’s been. Being that it’s the day before Valentine’s Day and the day we celebrate my favorite little guy; it’s only fitting that I talk about love. Of course, every day should be about love. I’m a believer in showing it each and every day but today I’m going to give in a little and really get into the month of love.

I LOVE my kids. Well I love our family unit as a whole (duh) they’re just so darn cute and I really love these stinkers. Even on our hardest days these kiddos have been the greatest thing I’ve ever done. Aiven is the sweetest thing EVER although I will admit she’s more of a sour patch kid now that we’ve hit four years old. Abel is the most chill toddler ever and he really is the greatest boy. Let’s not forget those dimples and that head of hair. Man those dimples are my kryptonite. Now, DO NOT for one second doubt their ability to make me question my own sanity. They are tiny humans full of life and personality just like any one else and that my friends, comes with it’s own set of trials but they are our trials and I love it.

Man oh man do I LOVE our version of madness. The random dance parties just because. The ever present negotiations on wether princess dresses are appropriate attire for doctors appointments or the cold weather. Taking what feels like the tenth break from cleaning up to give cuddles or to start up another random dance party. Yes I’m tired. Heck, I’m up past midnight decorating for my sweet boy so that his day can start off with balloons and Daniel Tiger. Yep. I’m tired, and my heart is oh so full.

I’m going to be straight up and say that I LOVE Abel’s therapists. Im in awe of the improvement that we’ve seen since they’ve become a part of our lives but really they just bring us so much joy and hope. Abel is so much happier and engaged, I’m forever grateful.

Among many many other things that I love in our lives I love the strength and confidence that I’ve found in becoming a mother. Don’t get me wrong. I’m far from perfect and I don’t know everything. We don’t have the flashiest things nor do I have my junk together when it comes to all the domestic stuff. What I do have is a mix between love, persistence, and the heart to do any and everything for my children. I can doubt twenty different things on any given day but I never doubt how far I’ve come and how much this mom gig completes me.

Now on to the important stuff. My smallest baby is now two years old guys. Where did the time go? Before I knew it he was this amazing human being who has, along side his sister, taught me more about life than all the past experiences could have ever taught me. I could never really explain to you all just what it feels like to love this little boy but it really is something special.

I recently had the great pleasure of being a guest blogger on Yankee Doodle Paddy to share my view of love which you can view HERE along with other love stories for the month of February

autism, children, toddlers

A long overdue update

It’s been a while hasn’t it

It has been two months since Abel’s diagnosis. Two months of overthinking and strategizing. Heck if I’m honest two months of being the mom who didn’t stop calling til she saw results. I hadn’t updated because honestly we hadn’t gotten through telling family yet (still some family members to go) and because I needed time to adjust to our new reality. We’ve been through countless evaluations and appointments and I’m just now coming up for air.

When we aren’t in the middle of therapies, it’s usually appointments or educational activities. All other hours of the day are spent trying to adult and endless research. Thats life when you’re still in the thick of it. It is exhausting but so fulfilling. Never in a million years would I have guessed that I’d be excited to introduce our new pecs system but here I am. Awake and way too excited for our speech therapy session tomorrow. In case you haven’t guessed it we’ll be introducing PECS tomorrow and I can’t sleep. Yup that’s me. Livin’ la vida loca. Oh! And we just started with a new therapist and she had great flash cards I’d never seen so naturally I’m a fan. Living on the wild side here.

Changes updates &wins

Progress, wether big or small, is huge and our days have been filled with subtle progress all over. Abel’s balance has improved significantly and he hasn’t been bumping into things as much as he used to. He’s much more flexible and is working on his transitions. He’s taking in directions and is in the right direction.

My smarty has been saying hi (albeit to the tv but I still call that a win) he has said mom on numerous occasions which is my absolute favorite, and he’s much happier during car rides than he ever was before.

We no longer have meltdowns when grocery shopping and he just seems so much happier that his environmental needs are being met. We’re working on a sensory diet with high hopes that it’ll solve our sleep struggles and help him to focus better. His spd (sensory processing disorder) has hands down been a major factor and has been his greatest obstacle for some time now.

Before I continue I need to take a moment to express my utmost gratitude and sheer love for the professionals that have become an active part of our lives. In such a short amount of time they have taken the time to become attuned to his needs and boundaries. They give me hope for the future and for all of the milestones yet to come.

Speaking of therapists:

Abel now sees a physical therapist twice a week to work on his balance and to help him become more aware of his body/safety. She’s phenomenal and has formed such a great bond with our active kiddo.

He sees his speech therapist twice a week to help him regain some communication albeit through speech, sign, or pecs systems. This is where he’s the most resistant but I have faith that she’s the right professional for the job. Where he is hesitant, she’s steadfast and knowledgeable.

Next comes his occupational therapist who took longer to find than I’d like. Our main focus with her is to find a sensory diet that works for what Abel needs more stimulation in. We’ve only recently started therapies but the week that he did see her showed a reduction in the amount of sensory seeking behaviors as well as a major improvement in his overall mood.

Last but certainly not least is his early interventionist whom we found through the early steps program. She’s there to further implement the other interventions while focusing on family education. We are just starting out so I’m equal parts excited and anxious to see what she brings to the table for us

autism, children, toddlers

Crash course on our taste of developmental health

How Autism and Sensory Processing Disorder are a major part of our lives.

Abel rolled over before he even had a full handle on breastfeeding. He was always so alert and looked at you wise beyond his years. He sat and stood up right on time; heck, was walking beforehis first birthday. Talking even came fairly easy for him for a short while.

Now at just shy of two years old Abel is facing speech delays, social anxiety, and sensitivities to sights and sounds. Although there is still many evaluations, Abel is being diagnosed with Autism as well as Sensory Processing Disorder (spd).

A thousand shades..

Our shade of autism comes as social anxieties with eye contact, personal space, communication barriers and touching; Stimming (spinning/flapping/echolalia) to find stability and a feeling of imbalance with changes to his surroundings (new places/new people)

Our own special version of SPD comes as fear of sudden loud noises and craving for specific sensory stimulation, which is usually followed by a feeling of being overwhelmed and over stimulated. The sounds make it harder for him to get a night of uninterrupted sleep but we’re finding our way and getting there. We’re in the very beginning stages of understanding in the haze of developmental health but we’re confident we will find his perfect treatment and sensory diet.

Hindsight is always 20/20

Looking back, knowing what we do now, I see the telltale signs I never knew existed. The quirks I thought only made him a tad tougher than the other babies. I now know that Sensory Processing Disorder has always been a part of our day to day from the very start. I know that we’ve never been able to sleep fully through the night because of the sounds. I know that his need to climb and his need to be held are his way of coping. Although I still haven’t found my mojo with eating I do know that food textures and tastes are the difference between his three healthy meals and him only accepting nutrigrain bars as sustenance.

How I see it..

As daunting as developmental and behavioral health may be I am a mother. Any mother knows that when it comes to your children there is no mountain you won’t climb. Well, this is my mountain, and on the other side I still see the future we both envisioned for him which is a life of happiness no matter what road he chooses. I still see him accomplishing the goals he sets out to and a fulfilling life because there is nothing that we won’t do for our children and because as long as we are his parents he’ll be okay.

Plan of action

For those not fully immersed in the hip “lingo” of developmental health and treatment I’m going to give you a quick run down.

  • Early intervention: targeted services to help children with delays or conditions. We are currently evaluating for occupational, physical, and speech therapy.
  • Occupational therapy: promotes the engagement of daily living such as sleep, play, learning, and social interaction.
  • Speech therapy: promotes motor skills, speech, and language development.

Neurologist appointments have given us a diagnosis and MANY appointments to fill our days. We have had hearing tests which are pointing us in the direction of possible hearing trouble. There’s an EEG in our future as well as some blood work. We’re covering all bases and learning all that we can as we go; letting God lead us to what we need to do for our family.

Want to know just what Sensory Processing Disorder is? Click here

Uncategorized

The lingo

Stimming: Self stimulation with repetitive movement, sounds, or movement of objects. Echolalia is also stimming

Echolalia: Repetition of phrases, words, or parts of words. Can also be used in place of typical communication

PECS: Picture Exchange Communication System, allows people with little to no current communicative abilities to do so using pictures.

Sensory Diet: A carefully designed, highly personalized activity plan that provides the sensory input that an individual needs to remain focused and centered throughout their day