Advocacy Day!

Today, Dan and I took a day off from work. It wasn’t to enjoy the nice weather, but seriously, we are having some amazing weather right now. It was for something much more important than that. Today, we and a group of our peers advocated for Fragile X Syndrome Funding for Research and Programs with members of Congress. Not only that, but we actually had the largest turnout of advocates with 170+ folks covering 42 states. Such an amazing representation for the Fragile X Community!

In Missouri, there are over 30,000 carriers, which I am one of, and 2,000 with Fragile X. Nationwide, there are 1.5 million carriers and 100,000 with Fragile X. These numbers are probably a lot higher as Fragile X is still misdiagnosed as Autism. Fragile X is the most common known single gene cause of Autism Spectrum Disorder.

Our asks today were simple: Join the Fragile X Caucus, Sponsor the STAT Act that will enact policy reforms at the FDA to accelerate development of therapies and facilitate patient access to them (early intervention is key!), support Fragile X research funding with the NIH, CDC and DOD and expand Telehealth services beyond the pandemic. Today, I think we all felt heard. It is our hope that we see change come from these meetings and we look forward to building these relationships with members of Congress as we cannot do this alone.

Now here is some great news…anyone can advocate for Fragile X Syndrome!! Did you know that there are other conditions that can benefit from Fragile X research? Alzheimer’s Disease, Parkinson’s Disease, Down Syndrome, Autism Spectrum Disorders, Cystic Fibrosis, Polycystic Ovarian Syndrome, Epilepsy and ALS. That is a big list!! I bet most of you know someone impacted by one of those conditions. If you are interested in learning more check out Fragilex.org or reach out to me! I would love for you to join us on this journey!!

XOXO

Follow-up Post

Hi all! I received a lot of feedback from the last post, some were amazing words of encouragement, some were asking how could they help us or any special needs parents in these types of situations. I also wanted to let you know I emailed our school to express my concerns and they were very receptive to everything I said and are working to make adjustments that will help Jackson, us and their staff in our day to day routines. I am currently working on an information sheet about Fragile X and more specifically how it impacts Jackson daily, so they can share it with the ENTIRE staff, not just his teachers and spread awareness.

So, first of all, for the amazing words of support and encouragement…thank you! You have no idea what those words mean to us and they might seem small to you, but to us they mean the world!

Next, how can you help a Parent to a Special Needs Child? There are so many ways and I actually found an article that I think sums up a lot of what I would say on my own that you can check out here https://www.verywellfamily.com/what-special-needs-parents-need-4151158.

In all honesty, the simplest of things like asking, “Can I help you with anything?” if you see a parent with their hands full and they are struggling is a huge help. That is something we can do for anyone, not just a Special Needs Parent and it helps immensely. Most people will not ask for help, they are too proud or don’t want to put anyone else out, so if you see someone that could use help ask them how you can.

Spread kindness

XOXO

Let’s Talk Behaviors

Hi all! I hope you are doing well and staying warm and healthy! We had snow this past weekend, so our oldest was super happy to be able to sled for the first time this winter. I was not so happy as I would rather be on a warm, tropical island, but hey, if he is happy, we are happy!

So, today I wanted to share some updates with all of you. I know I have shared characteristics in regards to Fragile X, some have been physical features such as the large ears, long face, prominent jaw and forehead and flat feet and of course, the intellectual traits like delayed speech, delayed in learning skills like crawling, sitting up and walking. However, I don’t know how much I have shared around behaviors, but honestly, behaviors are the hardest thing we deal with when it comes to Fragile X Syndrome. Jackson really struggles with Self-Injury behaviors and Aggression. When I talk about Self-Injury behaviors, I specifically mean head banging. We have spent so much time trying to monitor what causes the behavior, how to deter the behavior, etc. Honestly, we are tired of trying to dissect this, because what it ultimately comes down to is…there is nothing consistent on when or why he will do this. Then, a more recent behavior he has started to exhibit has been hitting/slapping. When I pick him up from school he is over the moon excited. He squeals and runs to me, but if I pick him up he begins slapping me and it is not a gentle little slap, he has left marks on my face. You might be thinking, “Then why are you picking him up?” Great question! If I do not pick him up, he takes off running down the hall and throws himself into the wall or the floor, so you decide which is worse him bashing his face into the floor or wall or me getting slap marks on my face. On a typical day we spend probably 80% of our time trying to prevent, deter, redirect these types of behaviors. Do you know how exhausting it is to race from one side of your house to the other to try and prevent your child from throwing his head into the wall or the floor and if you are outside have you ever tried throwing your face into the concrete ground, because Jackson has. Full disclosure, it is these self-harm behaviors/aggressions that prevent us from wanting to make plans or attend family functions where we know he will be over-stimulated, because it is just easier to stay home and not deal with it. I hate to be the person to miss a birthday party, holiday or any chance of gathering with people, but it is so draining.

I want to leave you with a personal story, so you can understand a little more of our day to day. When picking Jackson up the other day, he took off running down the hallway and one of his teachers just stared at him and when he threw his head into the wall, because I couldn’t get to him in time she laughed. It took everything out of me to not yell at her or cry. I had to hold it together, because I had my 2 kids with me and Jackson’s well-being was my main focus. This is what we deal with all the time. People see him do something out of the ordinary and to them, it is funny. To us, it is heartbreaking. If you are a childcare worker ask your employer if there are any children in the facility with Special Needs. Even if you are not a teacher in their classroom, it is information you should be aware of, so you can be informed on how to interact with child, if the situation presents itself. If you RUN a childcare facility, hold meetings with your ENTIRE staff to share specific information about Special Needs kiddos in your care. This will only help you and your staff successfully care for these kids and as a Special Needs Parent, it would mean the world to us knowing all staff is aware of our child’s situation and knows how to handle him.

As a parent to a child with Fragile X, there is a point where you realize that you are advocating for so much more than just special accommodations. You are advocating for your child’s quality of life. Once you realize that, you will see a side of yourself you didn’t know you had and you won’t give up!

Spread kindness, spread awareness!

XOXO

New Year, New Words!

Happy New Year, All!! I hope you and your families are safe and healthy as we start a new year. As we move into 2021, we have witnessed some great things with Jackson’s development! He is talking a ton!!!

Jackson has been saying things like, “Da”, “Ma”, “Carter”, “Grandma”, “Grandpa”, “Pa”, “Va” and even said Charlie and Aspen (our dogs)! My hubby made Jackson a photo book with pictures of our immediate family, so he can keep working on putting names with their faces and he is doing great!!!

For Christmas Jackson received a Sensory Bubble Tube that has floating fish and changes colors. We made him a sensory corner in the basement that has some chairs around the tube and also hung up some educational posters, one which has colors on it. When he sits in his corner he tells us the colors he sees in the tube and if you ask him the colors on his poster he can tell you Blue, Green, Purple, Red, Orange and Yellow!! He is learning Pink, Brown and Black too! It is truly amazing the progress he has made in such a short amount of time and we are so incredibly proud of him!

As we move forward in 2021, we continue to pray for everyone’s health, so that both the boys can continue in-person schooling and so Jackson can continue his therapy services. We pray for the medical professionals working in the Fragile X world as they continue to work towards treatments and ultimately a cure for Fragile X Syndrome and we pray for understanding and empathy for all. Special Needs children and their parents want what everyone else wants….for their child to be accepted and understood. It is a great reminder for children and adults that Special Needs kiddos and their families have battles you might not be aware of, most days are a struggle just to do simple tasks, so please be kind to everyone!

If you are not able to see the video below, click the 3 dots to the right of the sound clip and click download to view 🙂

XOXO

Sensory Moon Bubble Tube

Progress in a Pandemic

Wow, it has been too long since we chatted! Things have been crazy around here, but there is nothing new about that. We had to have another quarantine for one of the kiddos due to a kiddo in his class testing positive. So, of course, between working our jobs and trying to entertain our oldest…we are exhausted!

Luckily during all of this, our youngest has been able to be in his school to receive his therapies and for that, we are thankful! For kiddos with Fragile X, speech is a tough thing for them. Jackson is 3 and is really just starting to say words that you can understand. He has said some sentences such as, “I did that”, “More water”, “No more bubbles”. He is currently working on saying his colors, identifying them and sorting them. Another big success we have seen with Jackson is the way he separates from us at school. When he first started there was a lot of change…new school, new teachers, new rules, new schedule. He would cry each morning at drop-off, blow us 101 kisses through the tears and hold the teachers hand as they escorted him to his classroom. Now at drop-off, he is the star of the show! All of the teachers/helpers know Jackson, he is Mr. Personality! He will wave at anyone of them, but his real favorite is Mr. Clark or “Cark” as Jackson calls him. I think he secretly likes him because they share the name, but they seem to have a special bond and for a parent with a special needs child, you can only hope he has great teachers/therapists he connects with. So, he gets out of the car and he knows that he needs his backpack on before he can go into school. This is a full size backpack, which I will say, is very impressive to watch him carry it in there. He waits and sticks his arms through the straps, grabs his teacher’s hand and waves good-bye to us. He has truly grown leaps and bounds!

We even were lucky enough to get to see Santa this year and for a child who has intense anxiety, he loved every single second of it. He even told Santa, “No!”, when Santa asked him if he wanted Legos for Christmas…although, I think he would be pretty happy to get Legos LOL!

Jackson has only been a part of our public school system for about a month, if you take out the 2 weeks he had to quarantine, so to see the amount of progress he has made in 1 month makes our hearts incredibly happy and grateful to his therapists and teachers and we are obviously excited to see what the new year will bring him!

We wanted to thank each and every one of you for taking an interest in our journey, in our son and in our family. We hope in sharing this that you find some bits of knowledge. If you have a family member or friend with Fragile X or other Special Needs, we hope you find some comfort here in knowing you are not alone and we hope you will continue to take this journey with us. Our wish for all of you is to have a very safe, healthy and Happy Holidays.

XOXO

Let’s Talk About Rights

Hi all, I hope you are still safe and healthy as we rapidly approach the holidays and the end of what has been an interesting year, to say the least.

I have debated on posting this for a while now, but after further considerations and hearing more and more comments, I found I could not stay silent any longer. This is by no means a political post, if you turn it into that, maybe you need to look inside yourself and ask why you feel attacked or bothered by it. Full disclosure, my political views….treat everyone with respect, not just people that look like you, have the same beliefs, same creeds, same abilities, etc. EVERYONE deserves respect….period! I stand for respect, love, kindness, selflessness and the list goes on.

As COVID-19 continues to spread like crazy, I have been hearing things like, “Forcing me to wear a mask infringes on my rights!” or “I will continue to live my life and do things I want when I want and I don’t care what others think!” or “You can tell the sheep by the ones wearing the masks!”.

Ok, let’s break this down shall we? You talk about your rights, but did you ever think about my Special Needs Child that desperately needs, deserves and has the RIGHT to receive in-person therapy sessions? Of course not, because this virus is only impacting your life, right? Jackson should be getting 4 half days of school in the Special Education Program right now, but because of a direct contact testing positive, he and his brother now need to stay home until they are released from quarantine. Let me tell you that Therapy Services are not very effective virtually. They need to be in person to be able to focus, see, feel, etc. Some of these children are receiving therapy to learn how to walk, to build up those muscles to support their little bodies, to learn to speak/communicate effectively, some need services to help them keep clothes on their bodies, because they suffer from sensory processing disorders, some need help to receive sensory inputs to help them calm themselves/regulate their feelings. These are all things they receive in their therapy sessions, but because you feel YOUR RIGHTS are being infringed upon by asking you to wear a mask or stay home is a huge deal, these kids have to suffer and take huge strides backwards, but hey, I am glad you stood your ground and felt comfortable without your mask today! I am at home with a child that cannot regulate his feelings and self harms himself to get the sensory input he is lacking, because he needs to be receiving his therapy services, but guess that is just my problem.

Another thing to consider when you talk about your rights being infringed upon…I guess when you go to a restaurant you don’t think about the cook having the right to undercook your meal or they have the right to refuse to wash their hands when handling your food, but out of common decency, respect for others, respect for rules/laws/mandates they do their best to ensure you receive the best food and service. You can think about rights/law/mandates/rules in every industry/business and ask yourself why is it that I choose to follow some of these rules/laws/mandates, but not others? It is a law to wear a seat belt, but I don’t hear you complaining about Law Enforcement infringing on your rights, especially after you have a car accident and it saved you. I am by no means saying by wearing your masks and staying home to the best of your abilities will STOP the spread, but it will definitely help SLOW the spread and that is what we need. If we can slow the spread we can free up beds in our hospitals to allow others to receive treatments they need, we can give our medical staff/first responders the break they so desperately need and deserve, children can be in schools receiving the education and therapies they have a RIGHT to and need to thrive and we can work towards getting things to a new normal, but we CANNOT continue on this path only thinking of ourselves.

I understand that not everyone is able to stay home for reasons such as you are an essential worker, you are a caregiver to a family member or neighbor, but if you are out in public such as a grocery store…put on a mask while you are around others, wash your hands/sanitize them, skip the party being throw with 50 people….when this is over we can have the biggest party you want, but until then think about others around you and everything they are also giving up, because they are doing it while thinking of you and not just themselves.

Spread kindness, respect and love…this year has really pushed everyone to their breaking points and your kindness goes a long way!

XOXO

3rd Birthday Week

Hi all! Hope you are doing well. Things have been crazy here, but in a great way!

Jackson turned 3 on Tuesday and that means he moved to his new school! On top of moving to a new school to continue his therapies, he also switched classes at his current daycare. Very confusing, I know. So, prior to a new school, Jackson was already attending a preschool 5 days a week. To continue his therapies he moved to half days at his current and now also goes half days at a new school.

The hardest part for us as his parents were the logistics of getting him to and from each school. Since his current school is not in our school district the bus could not take him for us. Luckily, we have amazing parents that have stepped in to ensure he gets to school, so he can eat lunch with his friends and get his nap in!! To ensure he could eat lunch at school, he also switched classrooms. Keep in mind, Jackson just moved to his new classroom about a month ago, so for a typical developing person that is a lot of change….to a child with Fragile X Syndrome, that is enough to set them over the edge. I am pleased to say that Jackson has handled all of this change incredibly. He has been at his new school for 4 days so far and we have already seen a change in him!

Day 1 – At pick-up, he was waiting outside holding his teacher’s hand and he had his backpack on!! This is not a toddler size backpack either…full size backpack! It was probably the cutest thing we have ever seen, but of course, didn’t get a picture. On the car ride to his other school we asked him about his first day. He does a really good job of nodding ‘Yes’, but one question actually prompted a vocal ‘Yes’ and it was clear as day!

Days 2 and 3 – He has just been a chatterbox when we pick him up. He seems so happy at both schools and we could not be any happier!

Day 4 (Today) – I had to email his teacher today, because one thing he needs to take with him daily is a water bottle. After Day 2, his water bottle didn’t make it home. Now we know he has 2 schools and things can get misplaced, so I emailed both of his teachers and found out that yesterday when throwing away his trash he also threw his (replacement) water bottle away, they saved it, of course, but the bigger thing here is he is following their instructions to clean up after himself! Side note…we heard from the other school and they don’t see it, so odds are his brand new $15 water bottle was used once and trashed lol!

Now, the next big change is his new school is off for Fall Break this coming week, so the fact that he just got into the swing of things and they are changing for a week will prove to be a new challenge, but we will push through it!!

XOXO

If you are not able to see the video below, next to the play button/volume icon there are 3 dots. If you click that there is an option to download the clip!

Assessment Results Are In!

Happy Friday everyone!! I will cut right to the chase. We met with the school district yesterday to talk through Jackson’s Special Education Assessment results and he QUALIFIES!!! Jackson will continue to receive therapy services through the school district upon hitting his 3rd birthday and phasing out from the First Steps Program. We walked through his IEP (Individualized Education Plan) and he will be getting 520 minutes per week of Early Childhood Special Education (ECSE) Instruction, 60 min/week in Language Therapy, 40 min/week Physical Therapy and 60 minute/week Individual ECSE in a Part Time Early Childhood/Part Time Early Childhood Special Education setting.

We are beyond ecstatic that he will continue to receive the services he deserves and needs to grow, learn and thrive. We are happy that he will be part of an integrated classroom with Typical Developing and Special Needs students, so he can have some kiddos to look up to and mimic, but also to teach those kiddos acceptance, patience and kindness. I think all in that class can learn from each other in different ways. Thank you for all the prayers, good vibes and good thoughts you passed our way. We truly appreciate all of you, your love, friendship and support.

Throughout all of this, we also realize how lucky we have been during this transition period. I have said it before and I will continue to say it. This process is far from perfect. If anything, it is downright backwards and broken. As parents/family/friends of Special Needs kiddos we all need to be their voice and advocate for them. In Missouri, services and qualifications vary by school district. Some schools will say if you have ADD or ADHD you automatically qualify, but if you have a genetic disorder like Fragile X…which is in your DNA and can be tested for and has no cure, you must jump through hoops. How does that make any sense? In a lot of instances people will say to keep the government out of our lives and this is by no means meant to be a political post, but there needs to be some type of regulation when it comes to Special Education and the steps taken when it comes to Assessments, Acceptance Criteria, etc. Keep fighting for these children…I know we will!

XOXO

Special Education Assessment Update

Hi all! I hope you had a nice long, holiday weekend! I want to apologize that I did not update you all sooner on the Special Education Assessment. That day was crazy!! While Jackson and I were at the assessment, I received a phone call from our kids’ school stating our oldest needed to be picked up immediately as a classmate tested positive for COVID-19, so we had to self-quarantine our oldest as a precaution. As you can imagine, working full time and having our 4 year home with us did not leave a lot of free time for much else! I am happy to say he remained healthy during his quarantine and so did all of us. He actually went back to school today, hooray!!!

So, let’s get into the assessment. I could sum up the day in one word…terrible, but in full honesty, that is what we wanted. As I have stated previously, even though Jackson has Fragile X Syndrome, an intellectual disability that will never go away and is part of his genetic code, he does not automatically qualify for any of these therapy services. So, to qualify for services, your child needs to show they truly need them…again being intellectually challenged apparently isn’t enough.

We arrived at the school and it was discussed that Jackson would go into a room with two therapists while I met with the coordinator, answered more questions and talked through how his assessment would go. This was perfect, because Jackson is very nervous and anxious around new people, so right off the bat he was in tears and very upset. This absolutely broke my heart, but I needed to hold it together, because what I needed him to do was show what life is like for him and us regularly, so these people could understand his/our struggles. I also knew if he was so upset, there was no way he could perform the tasks they were scoring him on, so in turn that would help us. After I got through part of the paperwork, I was reunited with Jackson and boy were we happy to see each other!! He sat in my lap and tried some of the activities they asked of him. Some he could do and others were not possible. At one point, one of the ladies asked me about his speech and if he could say certain sounds and such. I said he does say “pop”, but it isn’t consistent. She tried and I tried and he wasn’t having it. Finally, I saw she had bubbles, so I asked her to get those out. Low and behold, Jackson said “pop”. To be honest, he had to have said it about 20-30 times. You are probably thinking, Lesley, you are crazy! You don’t want him to say “pop”, he might not qualify! With all the doom and gloom you are put through having a child with special needs and trying to ensure they qualify for services, it is OK to celebrate these things and they SHOULD BE celebrated! He has soooo many other things he is behind on, that I think everything will work out the way it is intended. We also know that Jackson can do a lot more than what those folks saw, but they are not consistent behaviors and also aren’t age appropriate, meaning he is behind on those things associated with being 2 almost 3 years old.

The next thing we did was meet with an Occupational Therapist and a Physical Therapist. Oh boy was he excited to run around in this cool room! There was a mini-trampoline that he loved and they let him play with balls. He loves to throw/hit balls. During this assessment, he actually fell twice and hit his head both times. Obviously I never want that to happen and they felt terrible, but again, these are things they need to see. His coordination is not always the best. He just got orthotics about a month ago and those have helped, but Fragile X kids also have poor muscle tone, so I am actually glad that did happen. After falling a couple times and already having a rough go of it during the first part of his assessment, he really did not want to sit or cooperate, so we ended the day. We left the school with a few more documents that I needed to fill out and mail back, which I did in 2 days.

So, you are probably thinking get on with it already, what are the results. The results are…we don’t know anything yet. In the state of Missouri, they now have 60 days to review everything and provide their determination. First Steps will stop providing services to Jackson effective October 19th and effective the 20th, the school system should pick him up, if he qualifies. For now, we continue saying our prayers that they will have a determination that he qualifies and that we get that before his birthday to avoid any gaps in services. Due to COVID-19, there are a lot of families that are in the same boat waiting to have their child’s assessment and get their results prior to their 3rd birthday. However, there are a lot of kids that won’t have their results prior, so they will have a gap in services. I know my opinion does not matter, but that is not right at all. None of these children can stop a pandemic and it is not their families fault that everything shut down. If anything, the state needs to step up and if any child will not have their assessment completed and a determination in place by the day they turn 3, Missouri First Steps should be continuing services until the school district can pick these children up.

I pray that all of you and your families continue to remain healthy!

XOXO

Special Education Assessment – Prayers Welcome!

Hi all! I hope you are all healthy and enjoying the last few weeks of Summer. As the school year begins, we are reminded that Jackson will be 3 this October and on his 3rd birthday he will be released from the First Steps Program, which is Missouri’s Early Intervention system that provides services to Jackson and other families with children with disabilities or developmental delays. As it stands today, Jackson receives 8-10 hours a week of ABA Therapy, 1 hour a week of Speech and 1 hour a month of Physical Therapy.

When a child’s 3rd birthday hits, they are released into their school district to POSSIBLY continue services. I emphasized the word possibly, because there is zero guarantee that he will qualify for services. That is the part that is the absolute hardest to deal with. It seems that each school district is different here. In some districts, if you have a syndrome/genetic disorder you automatically qualify. It isn’t all syndromes or disorders either, it is a random list. Fragile X is a GENETIC disorder. It is not going to disappear, a person with Fragile X will have it the rest of their lives. If you were to look it up you would see that the gene that causes Fragile X is actually the FMR1 gene, which is referred to as the Fragile X Mental Retardation Gene. So, to say those children need to go through an assessment to see if they qualify is ludicrous and just another piece of our education system that is broken.

This Wednesday, I will be taking Jackson to his assessment where he will be put through a series of play based sessions to see if he is delayed enough to get services through the district. It is one of the worst things to have to sit here and think I hope he is delayed enough or I really hope he does terrible, so they will qualify him, but what other options do we have? To continue all the services he currently has is so expensive and not an option for us, so instead we have to pray that the education system changes at some point or that he just has a really bad couple of hours to ensure he gets some services through the district.

As a parent of a child with special needs, we celebrate everything, big or small, because even the small things are huge for him and every single day he works so hard to achieve them. All we want to do is be happy and proud of all the things he has accomplished in his short time of all his therapies only to turn around and have to downplay it all, so he has a fair chance in getting therapies that he clearly needs to thrive. How messed up is that?!

If you have a few moments over these next few days if you could say some prayers or send some good vibes our way, we would greatly appreciate them. If you have some time to send an email to your local congress person to find out what they are doing to help children like Jackson that would also be a huge help. This is a fight we will continue the rest of our lives and we could use all the help we can get. Disabilities, Syndromes, Disorders they are not all cookie cutter and each child is different, but to make someone ‘perform’ for possible qualification into a program that should accept them instantly is a joke and needs to be fixed. It should not be based on each school district, which here it is. All children deserve a fair shot…not just typical developing children.

XOXO