Apraxia Awareness Month

💙 May is Apraxia Awareness month 💙

This is Emma: my beautiful, energetic, sweet, sassy, very smart, and determined daughter who happens to have Childhood Apraxia of Speech. Apraxia is not a developmental delay; it is a neurological disorder that causes a disconnect planning motor movements needed to produce the correct sounds for speech. Making sounds correctly and consistently is difficult (many times close to impossible) for children with Apraxia.

The speech centers of the brain help plan and coordinate what a child would like to say. These parts of the brain send complex signals to the speech muscles of the face, tongue, lips, and soft palate. Normally, all this signaling works smoothly, and a child can make all the sounds he or she needs.

With childhood apraxia of speech, something in this process goes wrong. The speech muscles seem to work properly, and the child knows what he or she wants to say. But the brain has trouble working with the muscles to create the movements needed for clear speech. There is no quick fix or cure for CAS. Years of intensive speech therapy are needed for speech improvement and intelligibility.

I had never heard of apraxia before it became part of our lives. It has certainly made us appreciate every single little sound that Emma does make (or even just attempt to make). Emma’s apraxia is severe. She has now been in speech therapy for about a year and a half (5 days / week) and has come so far. While she used to babble mama and dada from about 6 to 9 months old and then stopped, she started speech therapy with no words or sounds whatsoever. Over the last year, from time to time she would say mama or dada but always randomly and never when we asked her to (and never directly to Pat or I). She has just started in about the last month or two to consistently say mama and dada whenever we ask her to as well as no (or more often no, no, no). As you may have seen, she also started to occasionally say Emma when asked to!! It took months and months of practice to learn how to drink out of a straw, and Emma is still not able to blow bubbles or stick out her tongue, things that come rather easily to most kids.

Aside from losing Bosco, I have never been more heartbroken than watching Emma really, really try during her speech sessions to make certain simple sounds but just not be able to and get so frustrated. There are so many time she will try to make a sound and it does not come out like she wanted and she will just grab me, pull me close, and hide her head in my chest and get so frustrated and upset. I always just reassure her that she is trying and doing great. Emma understands absolutely everything going on around her and anything you say to her and so desperately wants to talk. Even very simple words are very, very hard and we need to train her mouth how to make them by physically helping move her mouth for / with her. Emma can now make a bunch of different sounds but can’t always put them together to form a word. For example, we’ve been working on “moo” in speech – she can make the mmmmm sound no problem and can say oooh but cannot put the two together to say moo. We have also been working on the word up for a few months now – she can say uuhh but when she tries to make p sound, it comes out mama mama mama.

I want to advocate for Apraxia awareness so that families with similar struggles do not feel alone and so that others might know a little more about our amazing children who so want to be heard. I can’t count how many times I have heard (out of love from well meaning friends and family) that Emma will “speak when she is ready” or that one day she will just start speaking in clear full sentences like every other child. This is not the case for our sweet girl but that is OK! Apraxia is just a small part to Emma’s story and the woman she will become. She is fierce, works SO hard, is independent, tenacious and our girl will do so many amazing things!

Autism Awareness Day

Today is Autism Awareness Day, something we are aware of every day, not just today. I don’t think I can express my rollercoaster of feelings regarding autism better than I did back in December on Facebook. So, in honor of Autism Awareness Day, I will share that post again while promising Emma I will also always do absolutely everything I can to make sure she continues to thrive. Emma is so smart and determined and the most important job I will ever have is to make sure she can be / do everything she wants to in life.

Autism – One year ago today (now 1 year and 4 months ago) was when we received the official diagnosis, one that I had already known in my heart for several months prior.

I still remember the months before we received the diagnosis .. staying up every night reading everything I could about autism. I knew that not talking or talking late could indicate autism but had no idea about all of the other components. At first I thought well THAT is scary but never for one second thought Emma could actually have autism. Then the more I read, I knew there was no way Emma could NOT have autism. There were many people that told me to stay off the Internet and stop worrying. I had to continue to do research though because the biggest thing I took away from everything I read was that the earlier you get children help, the better. There was no way I could sit back and ignore what was right in front of my face. One person asked me does Emma laugh or smile? .. if so, it is not autism – oh, if only it were that simple!!

Over the last year I have felt every emotion imaginable when it comes to autism – worried, upset, devastated, fear, consumed with learning everything I could about autism, trying to find direction to get Emma lined up with all the therapy she needed, acceptance, and determination to make it my priority to make sure Emma has everything she needs to thrive. And thrive she has. One of the most common things people notice about Emma is how smart she is. She may not be able to talk yet, but she understands EVERYTHING.

When Emma was first diagnosed she had essentially no expressive language at all and very, very little receptive language. She wouldn’t let us hold her hands, she never once waved to us, didn’t play with toys – just threw them on the floor, never pointed to anything, etc.

Emma now knows her colors, over 40 different signs in sign language, understands pretty much everything we say to her, can do any puzzle you put in front of her, can recognize just about any animal you can think of, loves books, will now wave hi / bye to Pat and I every day, will come up to us and just hug us.

I am not going to lie, autism sucks. I have heard many parents of autistic kids say they wouldn’t want a cure to autism because it is part of what makes their child unique. While I am no longer as terrified of autism as I once was, you best believe if there was a cure, I would be the first one in line for Emma. No parent wants to see their child faced with any extra challenges. There are so many unknowns with autism – so many autistic kids never speak, the rate of epilepsy is extremely high, etc. To even do something as simple as make an appointment can be a challenge when Emma is in therapy 6 days / a week for most of the day. However autism has also taught us to appreciate every single milestone that Emma makes – even little things that I think many parents may take for granted.

A few days after Emma was diagnosed, I remember being in a coworker’s office and she had asked how Emma was. I broke down and started crying and told her that Emma had autism. Her response was so?, so what? She said Emma is still the same beautiful girl that everyone loves and autism doesn’t change that. She was absolutely right. Emma is an extremely beautiful, brave, sassy, fun, smart, happy, lovable, and strong willed girl, who also happens to be autistic.

Emma is TWO!

Hey guys,

I know it has been quite some time. Is anyone still reading?! 😊

I just wanted to share some pictures from Emma’s 2nd Birthday party with anyone that may still check back here from time to time.

Have a great weekend, guys! 😊

The girl gets cuter every day

Hey guys!

Is anyone still out there?? I know it has been quite some time since I have posted anything. I also haven’t posted any recent Emma pictures in so long so I thought why not today?! 


It is so hard to believe that in just a few short months she will be two years old! The girl is constantly on the move, loves books, throwing anything and everything within reach, and I may be biased, but she seems to get cuter by the day! 

Happy Thursday, guys! 

DO YOU WANT TO GLOW FROM HEAD TO TOE?

DO YOU WANT TO GLOW FROM HEAD TO TOE?

R+F just launched our newest creation: Active Hydration Body Replenish!

July36912517_211437289571075_5911529244604760064_n

Raise your hand if you have: 
Ashy skin
Dry patches
Crepe-y skin
Chest wrinkles
Irritated itchy skin
Dry elbows
Rough dry feet

This is unlike any body moisturizer you’ve ever used, and that’s not marketing hype.

💦Innovative 3D3P Molecular Matrix technology that draws in moisture from the atmosphere and locks it into your skin. It’s the same magic that’s in our Active Hydration Serum we use on our faces.

💦Powered by ingredients like coconut oil, Shea butter, Hyaluronic Acid and Glycerin

💦Keeps you hydrated and moisturized all day long without any stickiness!

 

Message me to get yours, but I’ll warn you… you’ll be obsessed too! 🙂

 

You can take a look at this moisturizer and all our products at http://lisacullen.myrandf.com.

 

 

 

 

Must read for all the mamas

I haven’t read an article that I loved or could relate to as much as this in a very long time. For any mamas out there, I thought this was definitely worth the read! 🙂

“Today I went to a baby shower.

Baby showers are beautiful and this one was amazing.

I sat with a bunch of mothers commenting how beautiful a bump is, how precious a newborn is, and lighthearted jokes about the days of sleeping being numbered.

But behind the little laughs and ‘awww’s’ of opening up gifts of tiny shoes, baby bottles and little onesies was the tired and toughness and realness of motherhood. Every mother there had their own heavy story to tell, had their own bags under their eyes packed with sleeplessness and exhaustion. But all they could say or write in the card is ‘you’re going to experience the greatest love you’ve ever known…’ They were all much too polite to say, ‘and it’ll be the hardest love you’ll ever know.’

I wanted to say it. I wanted to say, this love is hard.

This love will make you feel the most incredible, happy things, but it’ll also make you feel the saddest and darkest things. This love will have you feeling more lonely than you ever felt. This love will make you text your partner every detail of your life because you haven’t had anyone talk to for a few days. This love will make you fight with him like you’ve never before. This love can feel like you’re living on repeat. Every day, doing the same thing, and feeling like you’ve gotten nothing done.

This love will have you singing songs from The Wiggles because you’ve heard those songs on repeat, and have two little eyes watch you when you pee… for at least 8 years. This love will make you feel touched out, make you question your ability, your self worth and your identity… and your sanity. This love will keep you up all night, from 8 minutes to 8 weeks to 8 months to 18 years, because they’ll cry, and you’ll worry, because you’ll cry because you’re worried. This love will have you eat every word you ever said when you said ‘I’ll never…’

I wanted to say, this love is hard.

You’ll visit the ER more than you ever have, even when you probably don’t need to. You’ll find yourself running water in the shower, humming in a low tone, swaying from side to side because it worked once. You’ll have to teach this little love how to sleep, how to feed, and both of that will hurt.

I wanted to say that you’ll have it all figured out and then as soon as you do, everything changes again.

I wanted to say, this love is hard, but I didn’t.

Because one day, her baby will smile, one day her baby will sleep the night, one day she can turn the shower on to actually have one, one day it won’t hurt to feed and she won’t care so much how she feeds, as she won’t care what anyone thinks. One day she won’t have to text for conversation because she will find a friend she can vent to that’ll understand, even one she can vent about her partner to. One day she’ll find a new normal way to love her partner and a new normal to have moments together. She’ll learn to trust herself, her ability and she will find a new identity that means she can still be herself, and still be one helluva mother.

One day she’ll know it’s hard, it’s tough, and she too will have the sunken eyes, but she’ll know that things always get better. They do. I promise they do.

One day her little baby will grow up and say, ‘I love you.’ One day it’ll say, ‘I need you mum, thank you for being there for me.’

And she’ll know, this love, it’s hard, but it’s worth every single second.”

 

I could not agree with the article more – for sure the most challenging and rewarding job there is!