How Do We Start The Conversation?

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Some people in our life, including our closest friends and family, are just learning about J’s Speech Therapy and soon to be Occupational Therapy through this blog.

We weren’t trying to hide anything, weren’t embarrassed, not worried about being judged and we weren’t too overwhelmed to talk about it. It’s hard to put into words why this is news to most, but I’ll try.

J is a healthy, happy boy. He loves cars, puzzles, anything letter related, going to the park, Disney (it’s in his DNA), his family and his friends. I don’t feel anything is “wrong” with him. Thankfully, he’s not sick. He just has to work a little harder at things than some other kids do. And also not as hard as some other kids do.

So this raises the question-how do we go about starting the conversation? To make a big announcement may seem like it’s a bigger deal than it is, in the sense that something is “wrong.” By not saying anything, it may seem like we are holding back or that more is going on.

I don’t have an answer and would love to hear from other parents! There’s no shame or embarrassment in kids needing some extra help along the way and it’s important to talk about.

Feel free to comment below, Follow me on Twitter or if you know me in real life-reach out personally! I would love to hear from all of you!

Mom…Mom…Mama…Mommy?!

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Most parents can definitely relate to this clip:

I waited a really long time to be called any version of “mom.”

J started speech therapy at 2 years and 5 months old. In that time, I heard some babbles of mamamama early on, but never in context. There were times I’d wonder if one day he’d wake up and just say it. He spoke in grunts, used lots of gestures and we understood everything he needed and wanted. 95% of the time, I never cared that he wasn’t calling me mommy. But every once in awhile, the thought that he hadn’t called us mama and dada would creep in and we’d wonder when it would come.

After a month or two of therapy, it happened. His speech therapist asked who I was and he said “mom.” It was awesome. I stayed “mom” for months. I figured he was skipping over the cute baby way of saying mommy. Maybe were going straight into teenage years where he was too cool for mommy and went right to mom. A few more months passed, we became mommy and daddy and it has stuck.

I remember us all being in the car one day and I said “we’ve waited a long time for him to talk but you know once he does, he’s not going to stop.” I knew the day would come that we’d stop wondering when the words were coming and be experience our very own version of the clip above. It did and despite how often I hear my name most days..which is a lot…I love it.

Sometimes it’s hard to remember these milestones as time passes because he’s come so far. In one way it seems like just yesterday he was grunting because he wanted something to eat. Now he asks his sister how her snoozie was when she wakes up. He says Thank You to someone that opens a door for him. And he says “hey mommy?” and “hey daddy?” at least 100 times a day!

*The YouTube Clip was posted by Erudius

The Letter of the Day is C!

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Chicago. Croup. Cancellations.Cisforcookie

Back in the Fall, we went through a two month sick cycle in the house. Mot households have been through this. Everyone taking turns passing around different illnesses. This also resulted in cancelling various weekend plans. One of those activities was taking a trip to Chicago to see friends we haven’t seen in a long time.

Last week I saw a great deal on flights to Chicago for this weekend and we decided to book a 48 hour trip. We were supposed to leave Saturday morning and we were coming back Monday afternoon.

J’s baby sister’s name also starts with a J so throughout the blog, we can refer to her as ‘Baby J.’ 

Baby J wasn’t sleeping great all week. By Wednesday she started coughing and had a runny nose. I chalked it up to a cold but was watching to make sure it wasn’t getting worse. It wasn’t and on Friday we were packing for our weekend excursion. After they both woke up from naps, I realized Baby J was not acting like herself. She was crying randomly, laying on the floor out of no where, etc. That gut feeling said to take her to the doctor to make sure this was just a cold before getting on a plane in less than 24 hours.

Good thing I did!

It turns out that cough that had kept her up some nights and bothered her during the day was croup. And it’s contagious. I had a feeling it was since that same day J started with congestion.

Needless to say we cancelled our trip to Chicago and have been hunkered down with sick kiddos all weekend. It’s sad to see them feeling so bad. Baby J has also developed a fever since getting back from the doctor and has not been herself. She’s taking extra naps and I’m hoping she’ll feel better tomorrow. If not, the doctor may get another call from me! Especially with all these stories going around regarding the flu.

I’m trying to keep J calm and rest. Which is so easy for a 3 year old boy, right?! Quiet games, activities and some extra shows/movies have been on the agenda all weekend.

Hopefully Monday will kick off the return of my healthy babies!

 

TGIF! Two Step Party Time!

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“Dance…even if you have no where to do it but in your own Living Room.”

This is a lyric from Baz Lurhman’s Wear Sunscreen – a favorite speech/song of mine.

Do your kids like to dance? Both of mine do! And since they come form Dave Matthews Band Fan Parents, it’s often played in the background. Sometimes the DMB Pandora Station is on as we play LEGOs. Other times we’re using the DMB Lullabies to get them to sleep.

One day in an effort to change things up, I asked ‘J’ if he wanted to have a Two Step Dance Party. He got really excited and said YES!

So now this is an almost daily occurrence in the Living Room of our house. He’s so happy in his run/spin/dance moves and it’s a great way to get out some energy! Also a good workout for me and a way for the baby to practice her moves!

Take the advice from ‘Wear Sunscreen’ and dance-even if it’s in your own Living Room!

What is Sensory Processing Disorder?

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A question I get asked a lot! Not an easy one to answer since it’s different for everyone.

The STAR Institute for Sensory Processing Disorder is a great resource. Here is their umbrella definition:

“Sensory processing (originally called “sensory integration dysfunction” or SID) refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Sensory Processing Disorder (SPD), exists when sensory signals are either not detected or don’t get organized into appropriate responses. Pioneering occupational therapist, educational psychologist, and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”

They also mention that “symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity.”

That last line goes back to what I mentioned in the beginning. Due to that broad spectrum, this can be different for everyone. It’s helpful that I started reading “The Out-Of-Sync Child.” There are many sub-categories of Sensory Processing Disorder that the book gets into. Within those sub-categories there are descriptions as to how a child may react if they are considered overresponsive, underresponsive or sensory-craving. Children can fit into one of these boxes or maybe a variety within the subcategories  As I continue to read “The Out-of-Sync Child,” I’ll be sure to share what I learn and how my personal experience relates to that information.

I can’t even fully explain what exactly it is for ‘J.’ I can say he seems to relate to that of a sensory-craving child but there are definitely moments where he is overresponsive. I’m understanding more about him as I read and learn. I know what triggers him and what doesn’t. I’m also still surprised by what does and doesn’t trigger him. I don’t think I’ll ever stop learning or have a full grasp on it, but it will become more clear one as time goes on. I look forward to having more tools to help him through his sensory meltdowns so they don’t ruin a portion of or sometimes his whole day. I look forward to being able to better help him handle situations that give him anxiety. None of us like experiencing the unexpected. It’s scary, unnerving and stressful. For ‘J’ it’s that times a thousand. We do a lot of prep during the day. We discuss what we’re going to do, who we’re going to see and as any changes arise, we talk those through as well. Once we work with our Occupational Therapist and do the homework I’m certain we’ll have, I know he will be able to organize his thoughts and feelings so much better.

I mean he’s super smart…yeah I know every parent says that…but seriously…he’s insanely smart. Which could be an additional factor as to what’s going on. But that’s a blog for another time.

Links to a Few Resources

The Out-of-Sync Child by Carol Stock Kranowitz

STAR Institute

What Is Sensory Processing Disorder? A video posted by MichaelGrass House on YouTube

When Kids Don’t Act Like They’re Supposed To (Understanding Sensory Processing In Kids) A video posted by Your Kid’s Table on YouTube

 

That Mommy Gut Feeling

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I’ll probably be talking a lot about my gut feelings in these blogs. You could even call it my MomSense (see what I did there). I’ve always believed in the ‘trust your gut’ theory, but never moreso than when I became a mom.

Trust your gut in whats best for you when delivering your baby. Trust your gut when youTrust_Your_Gut decide to breastfeed or bottle feed. Trust your gut on when it’s just a cold and when to take to them to the doctor. And trust your gut if you think there is something not so “right” or “typical” when it comes to your child.

My gut guided me to seek out an evaluation for speech and my gut guided me when it came to evaluating ‘J’ for sensory integration.

Not everyone will understand. Some may not even believe it’s a real thing. But no one knows your child better than you. I know what screams and cries are that of a typical 3 year old compared to ones that are indicating he’s in distress and overwhelmed by his surroundings. It’s not something we as parents or others around him did wrong. And there’s nothing wrong with him. If someone triggers him, I know it’s not their fault. All of that drives my mommy gut to know I made and continue to make the right decisions when it comes getting him the right therapy.

As most parents, me and my husband will be the biggest advocate for our kids. I will trust my mommy gut regardless of what others think or any challenges that may arise because of it. They’re worth all of it!

OT Approved – Now What?

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After an evaluation and a meeting with CPSE (Committee on Preschool Special Education), we were approved for Occupational Therapy twice a week. We start in February.

I felt relieved leaving the meeting. I knew he’d benefit from OT, but I had the thought in the back of my mind: “what if they say no?” Luckily we were all on the same page. Great! Now what?

Now I get 6 pages with names of agencies that provide Occupational Therapy throughout my county. 6 Pages!

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No really, this is great that there are so many resources! But where do I start? Since Sensory Integration was our main concern, we discussed during the meeting that it would be beneficial to find an agency with a Sensory Gym. However, I was told that with us being in the middle of the school year, it may be tough to find an agency with availability. After a few suggestions of agencies, researching online and looking up feedback in Facebook groups, I started my quest!

First agency I tried: no availability.

Second agency: left a message.

Third agency: has to get back to me.

Fourth agency: no availability.

Fifth agency: Availability! I’ll take it! Whatever it is! Sign me up! No problem that its 25 minutes away, I don’t care!

Thankfully, a friend brought me down to earth. It’s a little crazy to take my son and 1 year old daughter that far away when there are other options closer. There are two other places that are more conveniently located that I hadn’t tried. One in my town and I had to leave a message. The other is about 15 minutes away and they had availability!

The one in my town called me back and out of everyone I spoke with, I felt the most comfortable with her for one reason: she actually asked about ‘J.’ She didn’t just say “sure here are your options.” The Occupational Therapist I spoke with asked how old he was, if he went to school and how he was doing, what my concerns were, and figured out the best time for him. This conversation definitely put me at ease.

I went through a similar process when looking for a Speech Therapist and feel so lucky with how that turned out. I just hope he enjoys OT and trusts his therapist there, the same way he does with speech.

When is it Empathy and When is it Sensory?

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This is a question I asked our speech therapist in the Spring of 2017. My daughter was a few months old at the time and if we were in the car when she started to cry, my son, ‘J’ would cry and tell me to help her. When he first did this, I thought it was endearing and a little heartbreaking as well. Although I don’t doubt that those things actually exist, I started to realize it might be more than that. I questioned it more when we were with my niece and if she would cry, ‘J’ would request to “go home” or “go to his room” so he could calm down. I questioned it when we were out to eat with his friend after a playdate and his friend cried because he wanted a toy car. ‘J’ once again would start to cry and ask to leave. One night while laying with him as he fell asleep, I started googling (always an interesting activity) and realized this might be more than just empathy.

As time went on, I noticed how often he seemed overwhelmed in various situations. I also gave it some time to see if it was a phase he had to grow out of. It wasn’t.

He was Woody from Toy Story for Halloween and the back of the costume had velcro. This was the first time he ever seemed bothered by clothing. From then on, he asks for tags to be cut out of his clothes. We visited a drive -thru Christmas light experience, which we thought he would love! As soon as we arrived, he took one look at the large guitar playing lit up snowman and lost it. It was the saddest thing I’ve ever seen. I felt like I was watching him experience a real life nightmare.

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I started reading more into Sensory Processing and my gut said to seek out an evaluation. With the upcoming holidays and a Disney trip on the horizon, I wanted to make this happen sooner rather than later. Luckily I was able to get the evaluation done before the New Year and before our trip. I started to make notes for the evaluator regarding my concerns and when I was done I had over two pages. I was surprised, but once I thought back to things in the past I had brushed off and the recent months of new experiences we had, there were more than a few red flags.

This week we were approved for Occupational Therapy (OT) twice a week. I’m so happy and can’t wait to start! Seeing how much he’s grown and progressed with speech, I knowbeing in OT and doing exercises at home will help him better process his surroundings.

In recent weeks I’ve done even more research, joined Facebook SPD Parent groups and just started reading ‘The Out of Sync Child’ that I ordered on Amazon. Knowledge is power, right?

Click here to check out a video posted on YouTube explaining Sensory Processing Disorder. The video was posted by MichaelGrass House.

From Grunts To Words: Our 1st Year With Speech Therapy

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I wrote this back in September. Although a little outdated, it explains how this journey began.

September 2017

10 months ago our 2 year and 3 month old son grunted instead of talked. His birthday is in June and we knew at that point since he wasn’t talking, he either needed a little more time or we may need to have him evaluated. We decided to go through the summer, give him some time and see what September brought. 

Where It Started

At about 4 months old, he started sleeping with a Mickey stuffed animal and at 14 months he was saying “Mickey.” This was also the time he started walking so we thought he was right on track with developmental milestones. After a few months, we noticed new words were not being introduced. Sometimes he babbled mama and dada but never in context. Every once in awhile we thought we would hear a “hi” but it was a stretch. About a month before his 2nd birthday, we realized we hadn’t heard “Mickey” in awhile. We kept an ear out for awhile and realized he wasn’t saying it, whether prompted or not. This was our first red flag. Not only had no new words been introduced, but now the 1 word he did have was gone. He spoke in grunts, pointed to things he needed and wanted and we understood it all. He turned 2, we gave him the summer and by September nothing had changed. We were afraid of pushing him if he wasn’t ready but more afraid of holding him back from being the best he can be if he needed help. 

We started looking on our county’s website for the details regarding Early Intervention Services and getting him evaluated. We kept going back and forth as to whether or not we should move forward. Were we too worried? Maybe he just needs more time. Maybe we need to be doing more. Ultimately, we decided to move forward in the process, which we heard could take some time.

He was evaluated on his gross motor skills and his speech. The evaluator for his motor skills knew quickly he was right where he needed to be in that area. The evaluator for speech could tell he understood everything she said, but wouldn’t use words to communicate back. She had a toy that popped. She played with it over and over saying “pop” until he did.  After a few tries, he said it and we were amazed! A few weeks and many signed forms later, we began speech therapy twice a week for 45 minutes each. Luckily, the therapists we were working with also conducted a mommy and me class twice a week and we took the opportunity to attend those as well. All of this was covered by the county and we paid nothing for our son to begin his journey towards speech. 

Once he was approaching his 3rd birthday, about 7 months in, he had to be re-evaluated since the services would fall under the school district once he turned 3. There was a debate as to whether or not we would be able to continue because of how much he knew and understood. Luckily, they could see that he still needed work on sentence structure and pronunciation. We were approved to continue services twice a week for 30 minutes each until his 4th birthday. 

Where We Are

One year later from starting the process, we’re about 10 months into services and have a chatterbox that just started Nursery School. I’m not crying, you are…

Looking back at these 10 months, we think about all the little milestones. Saying “boo” for blue-amazing! Using words in context-wow! Putting 2 and 3 words together and now using sentences, asking questions and singing the Frozen and Moana soundtrack – verbally he’s a completely different child. 

To say I’m grateful for the service coordinators and speech therapists we’ve worked with, would be an understatement. They offered support and care for our son and our family that we could never begin to repay. The work they do, the patience they have and the guidance they offer is above and beyond any expectations I had. I’m happy we will continue to work with our same speech therapist. Our son is so excited when she’s coming over and to us she will always be family. 

My advice to other parents would be to trust your gut. If you feel there may be a physical or speech delay, have them evaluated. The evaluators will let you know if your child needs more time or if they could use some help. It’s worth it for them to have the best opportunity to grow!

Now that we’re in January I can say that he absolutely loves school! His teachers and friends are great and he’s learning so much. His speech continues to improve and I’m so excited by all the progress he’s made!