Catching Up and Reflecting on Life

It’s been far too long since our last get-together and I hope everyone is doing well! Life has been a whirlwind for us, with Carter juggling two ice hockey teams and a roller hockey team, swim lessons for both boys, and our usual chaos that comes with daily life. Now we have added PSR and Jackson is getting ABA therapy 8 hours a week! YAY!! I’m sorry I haven’t posted sooner.

For those that do not know, this past year has been incredibly challenging for myself and my family. I lost a dear friend, and then tragedy struck when my birth mother was taken from us in a sudden accident at the young age of 56. From the outside, it may seem like I have everything under control, but internally, I’m just barely holding on. It would be so easy to stay in bed or not leave the house. Honestly, most days that is how I feel. Somehow, I manage to keep pushing forward, and today, I experienced what I can only describe as a divine intervention.

Dan and I were discussing today how most families don’t fully grasp the effort it takes for us to have a simple outing. For instance, if Carter has practice, and we want to go out for a family dinner afterward, it’s a real challenge with Jackson. No matter how much we prepare him, his limited attention span and sensitivity to noise can turn what should be a pleasant evening into pure physical and emotional exhaustion.

This morning, Jackson had soccer with SPENSA, an incredible special needs organization with over 200 dedicated volunteers. We bumped into my friend Ryan and his family, whose beautiful daughter has Down Syndrome. They were there, just like us, to enjoy the socializing, beautiful weather, and the sense of belonging to a team. It struck me that God brought Jackson into our lives to connect us with some truly remarkable people we might never have met otherwise. While this journey was unexpected, and we often felt lost, we’ve discovered our path and made wonderful friends along the way.

I was doing the laundry this afternoon, actually folding it after taking it out of the dryer – that is a miracle in itself. Out of nowhere, the song ‘Awesome God’ popped into my head. I was born and raised Catholic and attended private school through high school and there are few songs that stick with you. That happens to be one of them. I grabbed my AirPods, played the song, and started singing out loud (don’t worry, I have a pretty good voice!). Midway through, tears welled up in my eyes as I thought about my birth mom, my friend Marina, and Jackson.

Regardless of your spiritual beliefs, something moved me to tears today. Perhaps it was a mix of stress and anxiety, a reminder to pause and grieve, or a reminder to be grateful for the amazing people surrounding us. Likely, it’s all of the above.

XOXO

Fragile X and Seizures

Hi All!! It has been too long and I truly apologize! Things have just been so crazy with life, work, and the Fragile X Resource Center of Missouri. The last time we were together I was telling you about Jackson starting school and our trip to visit EBK at Rush University…man that seems like ages ago, so let’s get caught up!

From a school standpoint, Jackson has been making so much progress. We just had his IEP meeting and he was able to mark off quite a few of his goals, which is incredible!!! He also made so much progress on Communication, that he will move into a Speech goal in the new school year. While you might be thinking Communication and Speech are one and the same, that is not the case. This year, he and his therapist were really working on building up his vocabulary comprehension, getting him to make correct letter sounds, working on finishing a phrase like, “Cow says…” He has done such an incredible job building his vocabulary, working on sentences with words such as What, Where, When that in the upcoming school year they will move into enunciating and helping him use those words he has learned in full sentences. He will work on positional words and understanding what they mean and so much more!

From a behavioral standpoint, after we met with EBK we tried a few different medications to help with his aggression we started seeing. Jackson was self harming with head-banging into walls or the floor, he was also hitting us and his brother, and some peers at school. The hitting at school was actually described more as hands on peers and not in an aggressive manner, like he was trying to effectively communicate to get their attention or to let them know they were in his personal space. Regardless of the intent behind that we had to work on a way to help him communicate that without hands on someone. We found a medication that seems to be doing wonders for his ability to focus at school, follow instructions and helps him with patience a little more. It is truly amazing!!

I have said it before and I want to say it again in case we have new readers seeing this for the first time. When I started this blog, I did it to be open, honest, informative and real. I don’t want to just highlight the win’s we have with Fragile X, because that is just not realistic. We have amazing days and we have days we can’t wait to get to the end of…just like anyone else. Recently, Jackson and Fragile X took us on a hellacious 2 week ride. On April 12th, we went to the playground behind our home like we try to do regularly to help wear the kids out before bedtime. Jackson had been doing so amazing with all of his climbing skills and therapies, so he was showing off climbing on a chain ladder. He then go a little more brave and went to try and climb down a high piece of equipment, but was not successful. He fell and broke his wrist with a buckle fracture. So, Wednesday we were at the Children’s Hospital getting x-rays and a cast that he would have for 3 weeks.

Fast forward to April 24th, Jackson and I were just arriving home and I walked him into the house and went to get our bags from the car. As I walked away from the door, I heard a click. Jackson had turned our deadbolt on the door and locked me out. I thought I had a spare key in my car, but I didn’t. I tried calling Daddy, but he was out with our oldest and didn’t answer. I tried to remain calm and patient as I gave Jackson instructions to turn the top lock. He kept repeating, “top”, but fumbled with the door knob and not the deadbolt. I could sense his frustration building. I had a screwdriver set in my car and tried to wiggle the lock, so he would know which one to turn and I had an old gift card in the car and tried to slide that in between the door to see if I could break in that way…neither was successful. Finally, Jackson was screaming and crying and I was panicking. I finally decided I had no other option and started kicking and putting my shoulder into the door. After a few rams, I had kicked the door in and snuggled Jackson so much. He was a wreck after watching me kick that door in and I needed the snuggle as much if not more than he did. New door and Smart Lock here we come!

The very next day I was headed to the airport for a business trip to Austin. What was supposed to be an easy 2 hour flight turned into an all day event due to a medical emergency on our flight. We actually had to make an emergency landing in Oklahoma, where we found out the passenger did not survive. You see something like that in a movie or tv show, but never expect that to happen on your flight and you certainly don’t expect someone to die. It was such a traumatizing and heartbreaking thing to witness. When I finally made it to my destination, I had been in Austin for just about 2 hours when I received a text message from my mother in law letting me know something was going on with Jackson and I needed to call my husband. I stepped outside from my business dinner and as soon as he answered I knew it was bad. He and Jackson were in the back of an ambulance. Jackson was not really responsive and his breathing was very shallow. During our call, the paramedic informed us that he was having a seizure. She spoke a little louder, so I could hear her and told us she was turning the sirens on, but don’t panic. Easier said than done. At this point there was not much more I could do other than let them get him to the hospital and fill me in once he got there. As much as I wanted to get back on a plane and head home…after what I just went through I could bring myself to do it. I would head home first thing in the morning. As the night went on, I received messages giving me updates, but the scariest one of all was that they needed to divert to another hospital. At the time, I actually thought that was a good thing meaning he wasn’t as bad as they thought, so they could take him to a closer hospital instead of Children’s. What it actually meant is that he was not going to make it to Children’s, because he was in that bad of shape. His oxygen was down to 40% and he had to be intubated. After a bit at the first hospital, he was finally stable enough to be transferred to Children’s, so they took ambulance ride #2. He had X-rays, CT scans and an EEG and was heavily sedated for most of that. Jackson has not had another seizure and we hope and pray it was an isolated incident, but because he has Fragile X syndrome, he has a higher risk for this to be a recurring thing. Seizure disorder is diagnosed in approximately 15% of Fragile X males. We now have a Seizure Action Plan in place between our home, school and all of his doctors and we also have emergency medication to administer if this happens again. Hopefully we never have to use it.

I successfully made it home the following morning and went straight to the hospital. Jackson stayed for 2 days until he was able to eat and drink on his own. Upon returning home, he still seemed off. We knew he just went through hell the past few days and that is probably what the issue was, but there was just something else that seemed off. Well as luck would have it, he also had an ear infection. This guy could not catch a break!!! We are finishing up our antibiotic and we are happy to report he is back to his amazing self, thank the Lord!!

Now that we are all caught up, I hope to keep updating more regularly again! We appreciate you following us on our Fragile Xperience!

XOXO,

Lesley

Chicago Trip, Sentence Strips, Oh My!

I just looked at the last time I blogged and holy cow…things have been a little busy here! So, let’s get to it! From The end of July until September I was busy working on our Annual Fragile X Walk. Every year we hold a walk at a local park here in St. Louis to bring our local families together, have a great time together and spread awareness. We had the most beautiful weather, a great turnout and we raised over $18k!! This was my first big event with the Fragile X Resource Center of Missouri and I am so glad to be part of this organization. They have been nothing but welcoming to our family, I have made some incredible friends who just get everything you are going through and I love that Carter has found some friends in this group that understand the things he goes through as a sibling to someone with Fragile X. If you do not have a local Fragile X Resource Center or you do, but you want to connect with us, please do. We would love to welcome you to our group!

In August, Jackson started his school year and it has been absolutely amazing! We were a wreck thinking how this transition would go, but he surprised us yet again! His first day he got out of the car, took his teacher’s hand, waved to us frantically, said goodbye 50 times and ran inside! He was so happy to be there and that put us at ease. It has continued to be fantastic for him as he is now using a PECS (Picture Exchange Communication System) Sentence Strip to communicate they things he is working on verbalizing and he is doing amazing with that. He has a book at home and one in his classroom at school. You keep the book in the same location, so he knows where to find it and then he grabs a picture that says, “I want” and then he grabs the picture of what he wants and puts those pictures together in a sentence on his velcro strip. The goal is that he continues to work on saying the full sentence when he brings us the strip. Sometimes he will just tell me “Strawberries”, but I will stop him and have him say I. Want. Strawberries, because we know he can do it…he just really wants the strawberries and bypasses the full sentence sometimes. I can’t blame him as I love strawberries too!

In September, not only did we have our Annual Fragile X Walk, but Dan joined me on the Fragile X Resource Center of Missouri’s Board of Directors as the Vice President. I have to tell you how lucky I am to not only have him as my partner in life as we raise these two boys and navigate our Fragile Xperience with Jackson and now have him by my side as we work to grow this group in our local area. We are now busy working on Board Member Elections, updating the Resource Center website, figuring out charitable contributions and planning next years events….all while having full time jobs, raising 2 young boys 5 and under, hockey practice/games, PSR, etc. It is crazy most days, but they are worth it!

This month we celebrated Jackson’s 4th birthday and it was such a great day! We had the Bubble Bus come and entertain us with their amazing bubbles and music, yummy food and more importantly amazing family and friends join us! And as I am sitting here typing this we are packing to head to Chicago today as we make our first trip to visit Dr. Elizabeth Berry-Kravis, affectionately known as EBK in the Fragile X community. She is an expert in the Fragile X field and we are so excited to make this trip and hopeful for what the visit will yield.

As you can see we have definitely been busy, but it has been a good busy!

XOXO

Our Fragile Xperience Updates

If you were to sum up the month of July the only word I can think of is AMAZING! July is Fragile X Awareness month and we have been so busy spreading awareness, sharing Fragile X facts daily and advocating fiercely.

Jackson started his Summer program at his new school and while we were absolutely terrified at how he would handle changing schools, new friends, new teachers and new therapists…he is thriving!! He has great friends that adore him, he has a Para that he adores and he is just loving everything about it. He is saying new words daily, which is incredible, he is identifying nouns, he loves to read to us at night (flips the pages and babbles his own story based on pictures) and is doing great with using the potty! The other day I picked him up from school and his teacher told me that he actually pooped on the potty. THIS.IS.HUGE!! We are not doing any real potty training with Jackson at this point. If he asks to use the potty, we take him, but we are not forcing it.

Next big event…we moved Jackson from his crib to a toddler bed. Again, this is a huge change for him. So, how did this work? Night 1 he came out of his room asking for his crib, so we put him in his crib and he went to sleep. Night 2 he laid in his bed and fell asleep pretty much instantly and has been sleeping in it ever since. After a week of the new bed, we took a part the crib and haven’t looked back! Way to go, Jackson!!!

This month Carter participated in a Siblings and Self Advocates virtual event where he did a water color of the National Fragile X Foundation logo. He had a great time and even asked if we could invite his new friends over!

This month we also had a fellow Fragile X mom and friend asked if I would participate in a school project with the Mississippi Gulf Coast Community College and my answer was 100% yes! Dan and I were interviewed by some amazing students that were learning about Fragile X and they also lit up their campus teal to support all individuals living with Fragile X. Incredible!

We also celebrated World Fragile X Day on July 22nd! 300 landmarks, bridge, buildings, etc. lit up Teal/Green/Orange in 6 continents, 13 countries and 46 states in the US!!! AMAZING!! Here is Missouri, we gathered at the Planetarium as it was lit up teal. We saw old friends and made new friends and just celebrated these amazing individuals and their families.

On July 24th, the Fragile X Resource Center of Missouri hosted a family bowling event, which was such a great time. The event actually fell during Jackson’s nap time, so Carter and I went to support our friends, socialize and of course, bowl. Carter bowled an 83, 86 and an 88. Not too shabby for being 5 and never having bowled before!

Lastly, I learned that all my efforts of pushing social media not only with my personal account, but the Fragile X Resource Center of Missouri helped us find not 1, but 2 local families that are impacted by Fragile X Syndrome. We are beyond excited that our outreach is working as we know there are a lot more families here in MO that we don’t know, but would love to find and offer any support we can.

Thank you all for reading our updates, thank you for supporting our journey and thank you for helping us spread awareness!

XOXO

Navigating Special Education in Public Schools

Today I wanted to share our experiences with navigating Special Education in our public school system in hopes to help others with what questions to ask the school and things to consider when filling out paperwork.

Back in October, Jackson phased out of First Steps and rolled into the public school system. Based on his IEP, he qualified for services 4 days a week, so he was enrolled under those minutes and began his journey in the public school system Tuesday-Friday. On Mondays and the second half of Tuesdays – Fridays, we had arranged for Jackson to attend a second school. Around December, emails from the school district started coming out about the next school year enrollment and it was our hope that we could get Jackson in 5 full day preschool at the same location to ensure he would retain the same bonds he made with all of his peers, teachers and therapists. The school sent home paperwork that stated, “Children on an IEP are automatically enrolled in the next school year.” In reading that statement, it made us think we would not have any issues with Jackson staying where he was. I made mention to his teacher we wanted to look at 5 full days and she said we could discuss at his IEP meeting in March…keep in mind that enrollment began in January.

As March approached and more emails/calls had been exchanged it was apparently clear that we needed to enroll Jackson in the 5 full day, tuition based program, which at this point had been open to families outside of our school district for 2 months. We were placed on a waiting list…12th in line to be exact. We sent an email to the Superintendent and also the person in charge of Special Education explaining everything that had happened…how the letters from the school read one way, how the IEP meeting should be held prior to a big event, such as enrollment, how when we phased out of First Steps into the school system we were never informed of all the options we had available, including tuition based programming and asked if there was anyway we could keep Jackson at his current school. The answer was a resounding, “No!” If Jackson were to stay at his school, then another child would lose their spot. What I heard was he couldn’t bump a typical developing child from their spot, because all the options are clearly presented to those children. What I heard was my child doesn’t matter and having an intellectual disability where we struggle with anxiety, change, trust, speech and everything else would adapt at a new school. What I heard was that my child didn’t matter and children outside of our school district took priority over our son. When the man in charge of Special Education, who is also in charge of the Gifted Program (two different ends of the spectrum) told me it is usually the parents that struggle with the change and these kids are resilient, it took everything out of me not to jump through that phone. I said clearly we will not reach any type of understanding or agreement here. I thanked him for his time and hung up. I sat in the driveway with tears streaming down my face and also the rage of a thousand fires burning inside of me. You do not know my child, you do not know his struggles, most people don’t know what Fragile X Syndrome is, so do not pretend to know how he will handle this change.

So, we reached out to another Early Childhood Center in the district and found Jackson a full time spot. It wasn’t ideal to switch schools, but we had to do something to ensure he had a school to go to. During this whole ordeal to secure him a full time spot, we were also told he would need his own para. We were instructed to reach out to the Developmental Disabilities Resource Board (DDRB) and start the process to have Jackson assessed and approved into their system. After a month or so of calls/emails, Jackson was assessed and qualified to get his very own para to be with him everyday at school. Jackson has now been at his new school 1 full week and things are going great. He is loving his para and he has a smile on his face every day at drop off and pick-up, which is all we can ask for. We are hopeful that the Fall school year will be just as successful as he will start up his therapy sessions again and we cannot wait to watch him grow and learn with some new friends, teachers and therapists.

Based on the things we have encountered as we entered the public school system, I wanted to share a list of questions in hopes we can help you with your transition when the time comes:

  • Upon your child phasing out of your states Early Intervention Program such as First Steps, ask them if they need to be sending any information (referral/recommendation/etc.) over to the DDRB
    • This piece was missed on Jackson’s transition, which is why it took so long to get him assessed and approved.
  • At your first school meeting (Enrollment, IEP, Tour, etc.) ask about all options for schooling, not just Special Education based on IEP minutes.
    • Full days; tuition based
    • Summer Programs
    • Snow Daycare (if offered)
    • Extended Year Services
  • Ask if they have any Special Education Program documentation
  • Ask for a clear payment schedule for each program
    • Each program our district offers has a different payment schedule (frequency, day of the week, length of time to pay over)
  • As a parent of a special needs child you have the right to call an IEP meeting anytime you want. The district must honor your request.
    • You need to give them 30 days notice, but they cannot deny your request
    • Set the expectation that you want regularly scheduled IEP meetings, if you want that (Monthly, every other Month, whatever frequency you would like set that expectation up front, so the school knows what to expect from you)

Upon joining the Board of Directors with the Fragile X Resource Center of Missouri, I have made some wonderful friends and I actually learned the other day that there is a great group of parents that are experts in navigating the public school system and IEPs, so if I ever need assistance with navigating the school district I have a group ready to jump in and join our IEP calls. Perhaps you have a local group that can assist you with these conversations and if you are not sure, I encourage you to reach out to the Fragile X Resource Center of Missouri and we will work to help connect you with someone local.

XOXO

FXS Potty Training @ 3 and a Professional Update

When we last got together we talked about different terms you might hear when you learn about Fragile X Syndrome. I wanted to throw some of those out there to set the stage for an update I am going to share. You always hear that you should not compare yourself to others, but it is human nature to want to compare things. We compare growth, milestones being met or missed, test scores, haircuts/colors, clothes, etc. We compare EVERYTHING! So, when we received Jackson’s diagnosis we tried to search for cases/stories of other children with Fragile X Syndrome to try and gauge what we should expect with him and his development. When could we expect him to talk, when could we expect him to walk, when could we expect him to show interest in potty training, basically, everything. I will tell you that in searching for this you really cannot find clear timeframes and one of the reasons is that all of these diagnoses differ. Some have Full Methylation, some have Partial Methylation, some also have a diagnosis of Autism, some have Mosaicism. So, it is very difficult to figure out what the future looks like.

So, what is the exciting news I wanted to share? Jackson, at 3 years and 7 months, has shown signs of interest in potty training!!! Not just interest, but he is actually using a big boy potty about once a day!! We are not forcing the issue and we will continue this approach, as we do not want to deter him from making such amazing progress. He will walk into the bathroom and just let us know he wants to try and goes! He is not far off from when his Neurotypical brother was potty trained, so this to us is just amazing. From what we could find in regards to Fragile X you should treat it the same as you would a typical developing child, but Children with FXS often exhibit a delayed ability to sense if their bladders or intestines are full and ready to void, but to me those statements almost contradict one another. Typical developing kiddos can sense those things a lot easier. So, we didn’t even think about potty training until one night Jackson got out of the tub and stared at the potty, then said potty.

“Do you need to go potty?”, I asked.

“Yes!”, he replied.

He then proceeded to stand and go potty!!! When he was done he flushed the potty, waved and told the pee bye. After we washed his hands and we celebrated this amazing moment, I then got on my phone and emailed both of his schools/therapists to let them know what had just happened, so they could be prepared if he tried while in their care. I also made sure to tell them we are by no means forcing this on him, which they acknowledge and then shared in our excitement!

So, if you are raising a child with delays, here is my advice: IT IS OK to search for answers on when you might expect things to happen, not only is it human nature to be curious or compare, but in your search it helps you plan and prepare. IT IS OK to celebrate any and all milestones, even if it is your child using the potty once and not progressing, because them showing interest is progress…it will happen in time, IT IS OK to feel any and all the emotions you feel daily. IT IS OK to ask your doctor questions about all these milestones and things. If they can’t give you answers I highly recommend using social media as a platform. Google will show you lots of research articles, studies and medical guides, but I have found so many amazing Fragile X organizations and families that have become my family and I have found so much support and they are always so uplifting. There is something to be said for having a real person to connect and share your experiences with. This is also a reason why we created this blog. We wanted to share our journey from the good, the bad, the real and the raw in hopes that maybe this can help other families.

Lastly, I wanted to share some news that most of you might know, but if you are new to following our story you might not know that as of May 1st, I was appointed to the Board of Directors for the Fragile X Resource Center of Missouri as their Vice President. So, if at any time you have questions or are looking for resources whether local or not, I encourage you to reach out and I will do my best to assist you, support you and lift you up!

XOXO

Understanding Fragile X Terminology

Hi All! Today, I wanted to take sometime and talk through some of the different terms you hear when you talk about Fragile X Syndrome. When you get a diagnosis of Fragile X Syndrome, you are hit with a lot of emotions like uncertainty, helplessness, guilt, anger, sadness, confusion and the list goes on and on. Then, you do what most people do and run to the internet to try and make sense of it all. You find information that is overwhelming, unclear, doom and gloom and you struggle to know what the future looks like for your child and your family. To make things even harder to process there are more types of Fragile X such as full mutation with partial methylation, mosaicism, Fragile X with a dual diagnosis of Autism. I will tell you from first-hand experience, when we received Jackson’s diagnosis, the doctor called me and confirmed he had Fragile X. She then stated it said partial methylation on the report, but she didn’t know what that meant. Imagine how we were feeling that she had no clue the results she was sharing with us. After we went to the Cincinnati Children’s Hospital and participated in some research studies and some tests were performed we learned Jackson was mosaic (see below what that means). So, let’s look at a few of the main terms you might hear.

  • Fragile X Syndrome – Fragile X syndrome (FXS) is the most common inherited cause of autism and intellectual disabilities worldwide. To have a diagnosis of Fragile X Syndrome would mean you have 200 or more repeats of your CGG in your FMR1 gene, which shuts off the gene, meaning no protein is being developed. That protein is what is needed for brain development.

While it seems straightforward that if you have 200 or more repeats you have a diagnosis and that is where you are left, however, there is also something called Mosaicism, which Jackson has.

  • Mosaicism – Among those who have the fragile X mutation, there are a group termed “mosaic”. There are two kinds of mosaicism in Fragile X Syndrome: repeat size mosaicism and methylation mosaicism. In repeat size, an individual has some cells that have a full mutation and some cells that have a premutation. In methylation mosaicism, all cells have a full mutation, but the methylation pattern may not be the same in all cells. Some studies have shown that individuals with either mosaicism may be less affected that those who do not have mosaicism.
  • Methylation – Methylation is a process in which a chemical group, called a methyl group, gets added to the DNA. When enough methyl groups are added to the DNA, the gene gets turned off. When methyl groups are removed, the gene gets turned on. This is a normal process and many of our genes are controlled by methylation. However, in fragile X syndrome, the methylation of the FMR1 gene turns the gene off when it should be turned on. When FMR1 is turned off, its protein is not made, and you see the features of fragile X syndrome.
  • Autism – Autism is a complex, lifelong developmental disability that typically appears during early childhood and can impact a person’s social skills, communication, relationships, and self-regulation. Autism is defined by a certain set of behaviors and is a “spectrum condition” that affects people differently and to varying degrees.

Like other syndromes, diseases and diagnoses Fragile X is not just a cookie cutter diagnosis. I hope this information was helpful. Keep spreading awareness, acceptance and love!

XOXO

Sources:

Dentist Appointment Update

Bright and early this morning we took Jackson to the Dental Anesthesia office to have him put under, so we could get dental x-rays and also fill two cavities on the backs of his upper front teeth. The staff was very friendly and talked us through everything. Dan and I went back with Jackson and we gave him some extra snuggles. While we distracted him with snuggles and his favorite YouTube stars, Ethan and Cole, the dentist gave him a shot to help sedate him. Jackson melted into his Daddy’s arms and quickly was ready to be moved to the dentist chair.

We went back to the waiting room and waited to hear any update. They came out about 20 minutes later to let us know they got his x-rays and didn’t see any other cavities, but they did notice he had some extra tissue from his lip that connected in between his two upper teeth. We were told that this also impacts speech delays, which obviously we have those with Fragile X already, but it appears he had something else to battle that we didn’t know about. The dentist offered to perform a Maxillary Frenectomy while he was sedated, so we took him up on that. What that means is they cut back this extra tissue to give him more mobility with his mouth. We will do anything to help this guy out!

After everything was done we were brought back to hold him while he woke up. He took a while to open his eyes and was moaning a lot. He did finally open his eyes, so the dentist and his assistants could get a look at his eyes to say we were ok to leave. They walked us to our car and we headed home.

The car ride had a lot of tears and moaning, but we got home and started the Ibuprofen/Tylenol routine and he went down for a nap. After 2 hours, he woke up and we took a bath, his favorite thing to do. I worked on washing off the bandage sticky marks he had and cleaned up his face ever so gently and washed off the latex/mediciney smell of the dentist office. He has been home for almost 4 hours and in great spirits. We will continue with the Ibuprofen/Tylenol through the night and see how he feels tomorrow. Overall he did incredible! He has a little sticky bandage residue left on him and a few red spots on his cheeks from some of the medical tape, but this guy is my hero every single day of the week.

Thank you for all the kind words, texts, emails, thoughts and prayers. While this might seem routine for some or not a huge deal for others to see your 3 year old that already faces struggles every day of his life, this was a stressful event, but he is so amazing and did great.

XOXO

Dentist Appointments

Tonight I am sitting here with Jackson soaking up all the happy moments he is having. Normally something sets him off for no apparent reason and head banging ensues, but tonight he has been in such a great mood from the time that I picked him up at school and I am loving every minute of it. These are the best days, but as a Special Needs Parent we know they are far and few between, because we face struggles and uncertainties that other families don’t have to worry about and honestly probably don’t think about.

While I am enjoying these moments, I cannot help but think about tomorrow morning. Tomorrow, Jackson will be going under anesthesia for a dental appointment. At his first dentist appointment they examined his mouth for about 30 seconds and found 2 small cavities on the back of his two front teeth. As a child with Fragile X Syndrome, Jackson has a lot of anxiety and will not sit still for a checkup, so we know he will not sit for a filling or two. While he is under they will give him a full dental exam, get x-rays and they offered that if we needed any blood work or shots to be given they could do all that as well.

In the year and a half since learning Jackson’s diagnosis we have learned to accept a lot of things, things we never thought we would experience in our lives and this is another one of those things. We know that if Jackson ever has other dental issues this will be the approach needed for all those visits. On top of the stress and anxiety we feel on a regular day it now becomes amplified thinking about this appointment. There is no way to know what Jackson will be feeling tomorrow, but we know all we can tell him is he is going to the dentist. We cannot prepare him to be put under, we cannot prepare him for the discomfort he will feel after, if any. We are basically helpless. It also becomes costly and we have found out that not all insurances will cover this expense, so you have to provide a letter of medical necessity and hope the insurance company picks up some of the bill. So, tonight we hope and pray it isn’t traumatizing for him. We hope and pray everything goes smoothly. We hope and pray we have no more dental issues to avoid the need for anesthesia in the future, but we also need to be realistic that this is probably not the last time we deal with this.

Keep us and Jackson in your thoughts and prayers and we will update you tomorrow!

XOXO

Fragile X Spirit Week

Hi all! I hope everyone had a wonderful weekend! Our weekend was filled with sore arms from getting our first COVID Vaccine (YAY!), Ice Hockey and Baseball practice and mom and dad were lucky enough to have a date night thanks to Grandma and Grandpa! My last post was about our Advocacy Day with members of Congress, which was such a wonderful experience for us. We made some new, local friends and made great contacts within our Congress member’s offices, which can only be a good thing!

Today, I want to talk to you about another advocacy event we participated in. In a past post I mentioned we were experiencing some issues at school pick-up with Jackson. After having wonderful conversations with the school director we discussed doing a Spirit Week to spread awareness and raise funds for FRAXA. FRAXA’s mission is to find effective treatments and ultimately a cure for Fragile X syndrome. Treatments for Fragile X are likely to help people affected by autism, Alzheimer’s, and other brain disorders.

Last week, the school held our Spirit Week. Each day the kids and staff could participate by wearing something Green or Fragile X related, we had a School Spirit Day and Pajama Day too! Between online donations, check and cash contributions collected at school we raised $615!

The overall goal isn’t to raise the most money, but to bring awareness to Fragile X and help others better understand Jackson and the daily struggles he endures. While Fragile X syndrome is the most common inherited cause of autism and intellectual disabilities, most people do not know what it is. The reason behind that is most doctors stop at the diagnosis of Autism, but we should be performing genetic testing to see if FXS is the reason for the Autism diagnosis. This is just another area that we need to bring awareness to.

Everyone can be an advocate! Reach out to your children’s school and ask if they would be willing to put on a Spirit Week to bring awareness to a cause near and dear to your heart. You might be surprised in their willingness to support you and your family.

We want to give a big thank you to everyone that helped in this Spirit Week from helping with themed day ideas, donations and spreading awareness, kindness and acceptance. Our family is truly grateful!

XOXO