Emotional Breakdown or Emotional Breakthrough?

My entire life I was raised in religion. I went to a Lutheran Preschool, I attended Vacation Bible School with my neighbors at their Baptist Church, I was in Catholic School from Kindergarten through High School, so I am not new to religion. I will admit that after being in a private school my whole life, once I graduated high school, I did drift away from attending church regularly, but I still considered myself religious and definitely a Christian.

I think a lot of us have found ourselves making deals with a higher being when something terrible happens in our lives or when we want something badly. Something like, “If you heal my friend or let me get this new job, I will go to church more” or “I will never ask you for anything again….” I openly admit I have had those conversations in the past. You will do anything in hopes that a miracle occurs.

When we got Jackson’s Fragile X diagnosis, I turned to my faith. I prayed hard and long. I prayed that his test results were wrong (I was in severe denial), I prayed he would lead a normal life, I prayed that our trip to Cincinnati would give us answers or possibly a treatment or some peace of mind. Then, I prayed that I had the strength and the courage to fight for our son every single day of his life. On top of advocating for Jackson, I work full time and just took on a part time job, my husband works full time, we have another son who obviously needs us, we have schedules to keep straight between 4 people, Parents As Teachers, Speech Therapy, ABA Therapy, school calendars, cleaning, cooking, laundry, etc. It is A LOT!!

Today, I was driving to get my morning coffee and heard Danny Gokey’s “Haven’t Seen it Yet” on the radio. I had never heard this song before, but in listening to the lyrics something hit me. I wasn’t in prayer mode or thinking about anything else while driving, but at a stop light I just started bawling. You hear people say, “The Spirit moved them.” I can’t say for sure what caused this burst of emotion. It could’ve been the daily stressors of my life needing to escape, it could’ve been the lyrics speaking to my subconscious letting me know that I just need to keep that faith that something big is coming. Whatever it was, after I wiped away the tears and finally stopped crying, I felt a sense of relief wash over me.

I don’t need to understand what transpired during that car ride and honestly, I never will. I will just continue to keep the faith that a higher being and a lot of guardian angels are continuing to watch over my family and maybe, just maybe, we will see that victory that Danny Gokey was singing about.

XOXO

Fragile X Awareness Day 2020

Today is Fragile X Awareness Day. Across North America, more than 60 landmarks are lighting up teal as part of the #TealTakeover to show their support for Fragile X individuals and families and all the doctors, researchers and organizations that support these individuals and families.

5 years ago, I was pregnant with our oldest, Carter. At our 12 week appointment we did a blood test that would check for possible chromosonal abonormalities such as Downs, Trisomy, etc. This test also would tell us the gender of our baby. When we did the test, we didn’t really think about anything other than the gender results. A couple weeks went by and when the office called they said everything was normal, but that I actually showed as a carrier for Fragile X Syndrome. This was something we had never heard of and the doctor also didn’t have much to tell me other than they wanted me to meet with a genetic counselor.

They asked if we wanted to have the baby tested through amniocentisis and our response was a clear, “Absolutely not!”

  1. We did not want to risk anything with our pregnancy. Both baby and I were healthy and while risks are minimal, it was not necessary
  2. The reason it was not necessary is that even if our baby had Fragile X that would not change anything. We would still have that baby, love that baby and do whatever we needed to ensure that baby thrived.

Long story short, Carter was born in March 2016, with no complications and honestly a pretty easy birth. At 2 months, we did have him tested for Fragile X and his results came back negative.

Now, Dan and I knew we wanted 2 children and wanted them pretty close in age, so fast forward to March 2017, we announced we were expecting another little one. Of course the odds of having a child with Fragile X were on our minds, but again, we still didn’t stress about it.

**I want to warn that below I share details of Jackson’s delivery below. Nothing too graphic, but just warning you here**

On October 19th, 2017, I was 37 weeks and 3 days along with Jackson. I made a call to my OB/Gyn’s Emergency Line at 11:59 p.m., because I was experiencing horrible cramping and then started bleeding. Now, I could tell I got the on-call doctor out of bed, which I can understand, but she did not seem to take my issues seriously. At the end of a yawn, she told me, “sounds like early labor symptoms, don’t worry.” Hopefully today, that same dr instructs patients to go to Labor and Delivery to be checked. Anyway, I had my next check-up appointment the following morning at 10:30. I called my doctor as soon as they opened and she too said she thought it might be early labor, but obviously keep my appointment and we will get things checked out. Well, I could not wait for my appointment at 10:30. I was actually already in the car on the way to her office. When I got there, they pulled me into a room and I waited to be seen.

While sitting in the exam room, I started to feel light headed and dizzy, so I walked out the door to look for my doctor or anyone to help and I passed out. When I came to, I was sitting in one of their office chairs and they were rushing to get a wheelchair for me. I was rushed over to Labor and Delivery to find out I had a Placental Abruption. The bleeding I was having the night before, was due to the placenta detaching. Jackson was losing blood, nutrients and oxygen and I was bleeding internally.

At 11:23 a.m. on October 20th, Jackson was born via an Emergency C-section. This guys life was already off to a rough start. He spent 2 days in the Specialty Care Unit and as he got better, I actually got worse. Suprisingly, we both left the hospital the same day, which dr’s were surprised happened. This could have been fatal for both of us. Statistically, Jackson is 1 of 19 deliveries to have happened that year due to a Placental Abruption. In our mind’s, he is an absolute rockstar.

Fast-forward to Jackson’s 18 month checkup. He was missing a lot of the “normal” milestones or at the very least showing delays in hitting them, such as sitting up unassisted, babbling, crawling, walking, etc. He was basically delayed in all of those things. We mentioned that to his pediatrician and also mentioned Fragile X just to remind him I am a carrier. His response, “Look at him, he looks great. He is fine.” So, based on that we didn’t think about Fragile X again until the summer. Hindsight being what it is, I would love to talk to that dr to educate him that the physical characteristics associated with Fragile X are not a given. Some kids have them and some don’t. Some of the traits don’t show until they are older, so that was a bold statement to make that he looked fine, especially when I mentioned I was a carrier. That summer, we took Jackson to be evaluated for Autism as he had a few signs and we thought it couldn’t hurt. They evaluated him and he was not placed on the spectrum. Then, the dr said something that made my heart skip a beat, “Let’s do genetic testing.” I couldn’t stop myself from blurting out, “I am a Fragile X Carrier and I have 78 repeats!” Her jaw dropped and said she would bet her career on it that Jackson has Fragile X Syndrome. We took home a cheek swab kit, got his sample the next day and sent it out to be tested.

Obviously, you know the rest or we wouldn’t be here. To sum up everything on this day that we bring awareness to Fragile X…Jackson is absolutely one of the sweetest kids I have ever encountered. He is not a burden to us, but truly completes our family. We are lucky enough to have such a great support system that advocates for Jackson just like we do. He will never fight alone.

In the beginning, hearing the diagnosis confirmed was hard emotionally. I will never forget that phone call. However, as time has gone on and we have learned things, researched things, met with experts, etc. we are in a great place with Our Fragile Xperience and I hope we can continue to share our journey with you, share facts about this syndrome and in turn you can be advocates for kids like Jackson too!

XOXO

Growth in our Surroundings

There is something to be said for how our environment influences us. The instance I am referring to happened over the 4th of July Weekend. We decided to pack up the boys and take a road trip to visit our family in Minnesota. Before anyone jumps to conclusions or lashes out, we remained in our car other than to pump gas or to let our oldest use his travel potty to keep him out of public places. So, upon arriving to my brother’s place it was almost an immediate transformation in Jackson and Carter.

Whenever they are around their older cousins they grow so much. Carter becomes more independent and Jackson was engaging in more activities with his family and babbling more than normal. He even tried to shoot hoops using a regular size basketball, pretty cute!

This is just another reason why I cannot stand COVID. All kids need to be around their peers, older and younger. They learn so much from others and to be couped up inside or social distanced from others halts so much growth development.

Just something to keep in mind that playdates and socializing your kiddos is so important to their growth and wellbeing!!

Stay safe!

XOXO

Do You Want To Be Accepted?

I think we can all answer in some way, shape or form that we want to be accepted. We want to be accepted into a new company, a new school, a new group of friends, a new neighborhood, new church or religion, the list could go on and on.

The other day I read a heartbreaking post by one of my friends in regards to her daughter and their day at the pool. As we all know, with COVID-19, we have been couped up inside. As some restrictions have lifted, it is nice that some parks and pools are allowing folks to venture out. For a parent, that is the best news ever as kids being couped up doesn’t bood well for anyone, LOL! So, during their pool day, her daughter, who is Autistic, had a meltdown. Kids nearby decided that on top of a meltdown, why not throw insults her way. The ‘R’ word was thrown around.

My goal is to be totally transparent about our journey and that includes me being transparent in my life. As a kid, teen and adult, I have used the word retarded in different ways. Now, it was never directed towards a person with a disability, syndrome or disorder (I used it to describe something I considered dumb), but that doesn’t make it anyless hurtful and offensive to others that might have heard me say that.

One of my fears for Jackson, as he gets older, is that kids will not take the time to get to KNOW his heart, to SEE him, to LEARN who he is. He is honestly one of the most loving kiddos, he has a belly laugh that can fill a room and make you laugh with him, when he learns something new his smile lights up a room. He learns differently than others and at a slower rate, but he is by no means dumb, stupid or retarded. I realize that it might take knowing someone with a disability to realize the impact of those words. To be honest, it took me having a child like Jackson to realize how hurtful those things are and how I would never say them now knowing the impact they have.

Today and everyday, I want to challenge each an everyone of you to talk with your children, friends, family members and share our story, Jackson’s Story, and teach acceptance, spread love, spread the information on how those words might not mean much to them, but could truly tear down a family if they heard them towards their child. Our 4 year old knows that we don’t use the word “Stupid” in this house and if he hears someone else say it whether when we are out and about or on TV he will whisper to me, “They said stupid, but we don’t.” That is right buddy, we don’t! If he can learn that at 4, I think everyone can learn that at any stage in their life! The world needs love, acceptance and it starts in the home to teach those things. Accept people for their race, creed, orientation, abilities/disabilities. People are beautifully different and that is something to be celebrated and supported. You do not and will not always agree with people’s choices or beliefs, but you most definitely can still be their friend and support them as a person.

XOXO

The Protector

Today, I wanted to take the time to talk about Carter. While the blog is about our journey with Jackson and Fragile X, Carter plays a huge part in the journey. He is Jackson’s big brother, his best friend and his protector and he deserves to be recognized for all his awesomeness.

Carter (4) and Jackson (2) are 19 months apart. At times we questioned if we were crazy to have the boys so close together, but as time has gone on we have realized it was the BEST decision we could’ve made.

From day 1, Carter was intrigued by Jackson. He wanted to hold him, help feed him and always wanted him to “do more”. We had to explain that babies don’t do much for the first few months, which Carter had a hard time understanding, but none the less, he loved Jackson!

It has been almost a year since we received Jackson’s diagnosis and we never kept that a secret from Carter. Even at the age of 3, we explained to him that Jackson has Fragile X and that means he learns differently than you and others, so always be there to help him, teach him and take care of him. He has gone above and beyond our expectations. In random conversations, Carter will tell me he is glad that he and Jackson are at the same school and he hopes they are always at the same school, so he can always be there to protect Jackson as his big brother. Guys, he is 4!!! The amount of love he has for his brother is unreal and makes my heart so happy.

We were at a play place, prior to COVID, and a couple of the kids said, “Aww look at the baby”. Carter very defensively said, “He is not a baby. He is 2 and his name is Jackson and he is my brother”. The kids actually acknowledged what he had said and engaged with Jackson as if he was a big kid like them. It was incredible to witness. At the age of 4, I was not in protective mode and I certainly don’t think I would’ve handled things the way Carter has. He is wise beyond his years and I know that no matter where lifes take our boys, Carter will always be there looking out for Jackson.

I also wanted to take a second to share that during all our crazinesss of Work From Home, virtual therapy sessions, school assessments and life that our 4 year old learned how to ride a big boy bike in less than a day. When Carter was about 2-2.5 we started him on a balance bike. These bikes have no pedals or training wheels. It is just supposed to help your child find their balance and work on their core muscles, so when the time comes they won’t need training wheels and boy did that work! He got his big boy bike on a Friday evening and Saturday afternoon he was riding like he had been for years! The most incredible thing to witness. I am so proud of both our boys and look foward to their future.

XOXO

Transition Assessment

Hi all! Hope you had a nice Memorial Day Weekend and are staying healthy. We spent the morning with the boys at Lone Elk Park, where they have lots of elk, deer and bison walking around the trails. We were lucky to see a lot of elk, some baby geese and even found a turtle walking around on the road, so we moved him to the grass. Then, we spent the afternoon playing with our splash pad in the backyard before the thunderstorms rolled in. A pretty nice day!

So, last time we talked I mentioned our meeting with the school district to start the process of transitioning Jackson from First Steps to the Public School System. For those of you that might just be joining us for the first time or maybe you are a regular, but don’t remember First Steps, they are Missouri’s Early Intervention system that provides services to families with children, birth-three years of age, with disabilities or developmental delays. The catch here, is not all children will qualify to receive services just because they have a disability or delay. They go through an assessment process and then a decision is made on if they are eligible. Luckily, Jackson qualified last year and has been in the program ever since receiving ABA, Speech and soon Physical Therapy and it has been such a blessing for all of us.

Sadly, Jackson will be turning 3 later this year and will phase out of the First Steps program, so we had a meeting with the school district and all of our therapists to talk about Jackson and start the process for his transition out of the program and into school. I say sadly because the services he receives are so personalized and one on one sessions and we just love his therapists, so it will be hard on all of us.

Our first meeting proved to be a lot harder than I thought it would be. I was pretty emotional the entire time talking through Jackson’s day to day struggles, because while he has made huge strides there is still so much more he needs help with. The woman asked us a ton of questions, but the one that hit me the hardest is a question that we do not get asked a lot and I kind of wish we did, because then people would truly understand a day in the life of us. “Describe to me about a day where you go out to eat or to a place other than your home. What is that experience like for all of you?”

“Describe to me about a day where you go out to eat or to a place other than your home. What is that experience like for all of you?”

“In a word, stressful.”

Honestly, we would much rather stay home than go to the zoo, a party or a restaurant, because with Jackson we know our calm time is limited. He will do well in the stroller for a while, but will want down. When he gets down he will want to run and he is still not the most stable with running and will usually trip, which will cause him to get frustrated, which will turn into him banging his head on the ground or a wall. If you put him back in the stroller he will of course be upset and try to gag himself to the point of throwing up. So, you also need a few extra outfits just in case. Since he is still learning how to talk, he will scream at times and you can’t predict it, but needless to say if you are in a restaurant and it happens, you will get all the stares or mumbles of people thinking/saying, “Why can’t you control your child?” Or “Why did you even come to a restaurant?” Well, we want to have a “normal” life, but this is our norm and wouldn’t change it or him for the world! We apologize for the inconvenience our child’s syndrome is causing you right now, but he cannot help it and all he wants and all we want for him is to live his best life without the stares or judgment.

At the end of the meeting, I was in tears just thinking about everything, but Jackson is truly the sweetest boy and deserves the world and we will do whatever we can to give it to him. We now have to wait for the school district to review all the notes and make a decision on IF Jackson qualifies for any services through the school district, if so, what services and how many half days a week. However, they don’t have to have this all decided until right before his 3rd birthday, which does not give us a lot of time to figure out transportation to and from school and his current daycare or other services outside of the district if he doesn’t qualify. We don’t want to have any gap in services, if it can be avoided.

We are hopeful that he will qualify for services and will keep you posted on this journey.

XOXO

Parent Empowerment Program Update

Hey all, sorry we haven’t updated you on our progress with the Parent Empowerment Program in a while. Between quarantine life and both of us still working full time things are a little chaotic in our home as I am sure you all can relate!

So, last Thursday we finished week 4 of 12 and I have to say we are definitely learning a lot. Chapters 4 and 5 were mentioned to be more of a review for us as Jackson has been in the program long enough to have mastered some of those skills, but as parents of a Special Needs kiddo, we hadn’t mastered those skills. One big takeaway I had personally was how I interact with him a lot of the time. When we are on the ground playing he sits in my lap a lot of time or I put him there when I read to him, but he really needs to sit across from me, so he can see my face, make eye contact and learn from my words and expressions. When I put him in my lap it was more for me to control him and make him sit and listen, because he normally tried to run away. So, that was how I tried to get him to focus. Now I realize that doesn’t work for him. When you think about it, it totally makes sense that in order to learn, mimic and grow you need to be able to see someone’s face, but when Jackson is not focusing and throwing a tantrum you forget that big piece of information. So, I was glad we still went over the “refresher” course.

We also had two chapters that talk about setting up activities for him, taking turns and getting in the spotlight. Let’s get inside Jackson’s mind for a minute…when Jackson is intrigued by something he gives it his full attention and nothing you say or do can get him to turn towards you or focus on you, so in order for him to move to a new activity you need to get in his spotlight to grab his attention. For him, bubbles is a big attention grabber, so you get a bottle of bubbles and start blowing them. He will turn to you and now you have his attention. From this point, give him a chance to react and respond. He now has the ability to communicate with us more by signing or smiling or just make eye contact to let us know he wants to keep playing with the bubbles. When we think he has had enough or we have had enough, we say something like, “Ok, last time and then we will go do….”. That lets him know we are closing that activity and at that point it makes it a lot easier to transition him to something else. You might be asking why he needs to move to other things, but with Fragile X, Jackson gets to a point of repitition almost an obession with certain things, so if he just continues with one of those games/items he won’t have the opportunities to learn all the other things he needs to.

Now, this week we have our transition assessment with the school district and our therapists. Fingers crossed that things go well and that Jackson will be able to continue receiving services once he phases out of First Steps and into the school district!

As I sat here typing this, I was listening to Casting Crowns – Praise You in this Storm. Seems fitting for where my mind is at with everything we are dealing with right now. Give it a listen!

XOXO

Parent Empowerment Program

Today, Dan, myself and my mom begin the Blue Stars Therapy’s Parent Empowerment Program! We are very excited to have this opportunity to partake in such a great program. It is a 12 week course designed to provide us tools and strategies in our day to day with Jackson and help him down a positive developmental path. Some of you might be thinking, “Why on earth would you need to be taught how to interact with your child?” To be honest, I might have had that same mindset if I did not have a child with Fragile X, but if you have spent anytime with a child with any type of developmental/intellectual disability, they need additional support and learn in different ways, so raising Jackson the same way we raise Carter would set him up for failure in life.

In taking this 12 week course it will allow Dan, myself and my mom (who is also taking this course) to be a lifelong advocate for Jackson and teach others how to interact with him, help them understand how he learns and what works best for him overall. The first chapter we have been assigned is called Capturing your Child’s Attention. This is huge, because if we are not able to get his attention and hold it, he will not be able to learn from our behaviors, words, etc. One big thing you notice with Jackson is he would much rather engage with an object than a person and our first chapter explains that. With a person, you never know the behaviors/reactions you will get with them. In other words, a person is unpredictable. With an object such as his activity table or slide, he knows what to expect with it. He will put a ball at the top of the table and it will go down the ramp and he will repeat that for a while or he will climb up and go down the slide over and over. That remains constant on how it will play out, there is nothing out of the ordinary that happens and for someone like Jackson that is what he likes. So, how do you get his attention away from things like that and help him focus on you? Well, we are about to find out!

My goal is to update you on our progress with this program and share things others might find helpful. The book we are working out of is called An Early Start for Your Child with Autism and while Jackson is not on the Spectrum, Fragile X kids do exhibit similar traits and there is a percentage of children with Fragile X that are also on the spectrum, which I mentioned in previous posts. This book has proven methods based on the Early Start Denver Model (ESDM), which our therapist teaches Jackson. You can find this book on Amazon, Target or Audible. So, check it out!

Stay healthy, friends!

XOXO

Quarantine – Therapy Resources

Hi all! First, I hope that you and your families are safe and healthy during these crazy times! I have been working from home the past 2 weeks now and while I love being able to wear leggings/yoga pants and sit on the patio with my laptop on a nice day I am definitely missing daily interactions with friends and family. We have FaceTime, which is great, but just not the same as being face to face.

The last time we talked we had just learned how our therapy services were being suspended until they could figure out other arrangements. Since then, Blue Stars, who is AMAZING has put together a plan to provide Jackson an hour a day of virtual services and to make up the additional 3 hours he usually gets we will use for phone calls/FaceTime between our therapist and myself and Dan to talk through progress/goals/next steps.

Parents as Teachers has also reached out and we will keep our monthly sessions going virtually as well. Again, so awesome! The one thing I am really unhappy with is First Steps of Missouri. Within his year…not even a full year of receiving services through them, there was zero communication from his case coordinator, which has changed a total of 3 times at this point. I actually reached out to his Speech Therapist who works through First Steps to let her know that Jackson’s school was closing and it was then she informed me that they were suspending services as well and that someone should be reaching out to me. So, if I didn’t text her at that point, I would not have known what was happening with First Steps….the organization that is in charge of handling all of our services between them and Blue Stars. I understand these are unprecedented times and I can only imagine the utter chaos all these organizations are facing, but at the same time of being a parent of a child with special needs that only gets these services so many years it is frustrating.

I hope all of you are surviving these chaotic times while soaking up the family time! I have to remind myself these are days we can make so many memories and be as creative as we want. Take time to FaceTime family and friends, send snail mail as a way to keep in touch and an activity for your kiddos, check in on your neighbors, of course, while keeping your distance and most of all Spread Kindness!

XOXO

Spread Kindness, Not Germs

I hope everyone is staying healthy and staying home, if at all possible right now. These are definitely crazy times. Within this past week of all hell breaking loose we have had to cancel Grandparents Day at school, cancel a year 4 olds birthday party, cancel a dental checkup, cancel a 4 year old Well Visit, cancel school, run to 6 stores looking for a can of Lysol….and the madness just goes on and on.

Yesterday we learned that all of Jackson’s Therapy Services have been cancelled for now. This is a big blow to us. He normally gets 8 hours of therapy a week including an additional hour of speech. Now due to folks continuing to spread COVID-19, our son will miss out on weeks of therapy. Another issue with this is that his services are all through First Steps, which will phase him out of the program in October, so all these sessions are crucial to his development. I am honestly tearing up as I type this, because he deserves the whole world and is absolutely one of the sweetest children you will ever meet and to help him in his day to day tasks he needs this therapy.

So during these crazy times and honestly, always…I want to talk about spreading kindness. Yesterday, I created a post on Facebook for Friends to Help Friends. This post was intended for folks to post things they were in need of that they might not have been able to find in stores or online. I had a friend needing toilet paper as she has a family of 7, but folks decided they needed 420 rolls for their family of 2 and cleared out the shelves. I am not saying everyone is hoarding, but is it that urgent to take every single pack off the shelf?? Luckily, I have great friends and someone was willing to give her 12 rolls of toilet paper and didn’t expect anything in return….Faith in Humanity Restored!

I was in need of a can of Lysol…just a can. I went to 6 stores…that was just in 1 day and could not locate any. My reason for needing a can is that with Fragile X, those folks have large, prominent ears, which makes them more prone to ear infections. Any germ or virus that Jackson picks up settles in his ears and turns into an infection. The last 2 that he had caused one of his tubes to clog. Now, try getting into an dr right now….his ENT, a month ago, was booked out until April and now with everything going on we are seeing all of our appointments being postponed until who knows when. So, he gets an oral antibiotic, which doesn’t really help the clog, I use drops, knowing that is also probably not doing anything and hope everything clears up because we cannot get into see a dr at this time. So, when I am looking for 1 can of Lysol it isn’t to turn around and sell for $50-$100 on Amazon or eBay, it is to kill any and all germs that I can in my house, car seats, etc to ensure I am doing my part in keeping not only Jackson, but my entire family safe.

I was also lucky enough to have a great friend that spared me a can of Lysol to keep my family a little safer. Seems crazy to say about a can of disinfectant, but I am grateful to this lovely lady.

As we are all asked to stay home, limit our contact with others, social distance ourselves, I ask you to find ways to help others, if you have the resources to do so. Maybe you were one of the first to race to the store and bought an overabundance of something that you now realize wasn’t necessary, think about sharing with friends or neighbors. You could leave it on your porch for them to pick-up to limit contact, if you have an elderly relative call them or FaceTime them to make sure they are okay. If they need anything offer to help them and drop off on their porch to avoid contact. Spread kindness, not germs. This isn’t just about your or me…this is about ALL OF US. Take care of each other now and always! Be Kind!

XOXO