5 Things Being a Mom of a Special Needs Child Has Taught Me

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Always be kind.

Always be kind. I'll admit, growing up over the years I have been guilty of judging and bullying and I've been subject to bullying and judging as well. I'm sure we all have at one point in time. This is a topic that many people don't want to admit to, who wants to be known as a bully or someone super judge-y? Who wants to be known as being mean?

One thing being a special needs parent has taught me is that you should be kind. Just because someone looks different, acts different, walks different, talks different, sounds different, behaves different, etc. doesn't mean that they're any different then you and I. We need to be more accepting to our special needs community, they're just like you and I but with special qualities that make them unique and special!

Jaxson is just like any other eighteen month old, he's goofy, loves to play hide and seek, loves to play cars with his brother, he loves to dance, etc.

I am strong.

Another trait this journey has taught me is strength. I'm physically strong: I can deadlift 285 pounds, I can squat 235 pounds, and bench 150 pounds.. but emotionally I wasn't strong. It wasn't until we had Jaxson that I found my strength and perseverance. I've had to fight to find answers, I've had to watch our son fight to live to thrive, I've had to fight insurance claims... our life with Jaxson is unknown but I'm going to continue to fight and advocate for him. As should you continue to fight and advocate for your child! If you think something is wrong, trust that mommy gut and keep fighting!

We are their advocate, no one else is going to do it for you!

Patience.

I can still remember when my husband told me how amazed he was with my patience with Jaxson. In the beginning we had many, many sleepless nights because Jaxson was hungry and couldn't drink enough to stay satisfied. He would take an hour to consume about 2 ounces of milk, definitely not enough to keep a baby full and sleeping. Not only did it take him a long time to eat, he would choke and gag on it as well. It was a difficult process, we had to allow him to suck three to five times, take the bottle away, allow him to compose himself, and repeat. That definitely taught me patience!

Don't get me wrong, I still lose my shit like any other mom--I'm not saying I'm a saint haha.

Hope for the best / Expect the worst.

Jaxson's genetic condition is really rare, there is about 205 world wide. There isn't a lot of literature on it either--everything is so new. What we know about the condition is that most have feeding difficulties, intellectual and developmental disabilities, seizures or epilepsy, microcephaly, and speech delays. There are numerous other symptoms or features that could happen and alarmed me when our genetics team told me. Now that I've allowed it to sink in the last few months... I can't stress about what might happen, I need to focus on what's happening now. I'll just worry myself to death if I continue to stress about what might happen. Hope for the best, but expect the worse.

If something does happen we will adapt and overcome.

It's okay to cry / It's okay to admit it's hard.

I cried, cried a lot after Jaxson was born. I cried after every well-baby visit when I found out he wasn't gaining, he was still jaundice, he was sick again, he lost weight, etc. I was a big pile of emotions and I'm sure the postpartum didn't help. I cried because I felt like I failed him, I was suppose to be his mom, his protector. Over the last eighteen months I've learned that this wasn't my doing, I didn't cause any of this, it's not my fault.

I have learned strength and perseverance with Jaxson but I've also learned that it's okay to cry. It's okay to admit that it's hard. This journey isn't an easy one, but it's definitely worth while!

Don't give up!

DYRK1A Syndrome Awareness Day!

Hello friends!

As most of you know Jaxson has a condition called DYRK1A syndrome, and was diagnosed April of this year. Since his diagnosis we have found an awesome Support Group on Facebook! There are families from all over the globe on this support page, and currently we are sitting at about 205 families! That is AMAZING. With the new technology of genetic testing more and more families are getting long awaited answers for their children! Some have waited over 15 years to get answers!

Over 200 families!

Since joining this group I have become a member of their Work Group with a goal to become a Non Profit Organization. With this we established an Awareness Date, August 21st, which is significant because this syndrome is found within the 21st Chromosome.

Related Post: Telling Tuesday.

There was a Meet Up in July where many DYRK1A families came together to meet and celebrate with their warriors. There were a lot of guest speakers present as well, they are conducting research of our children to help us and others to understand DYRK1A better. DYRK1A is so new that there is not very much literature out there about it.

Here are some statistics from the new study that was conducted:

• 98% had intellectual disabilities or global delays
• 100% had speech delays
• 100% had motor difficulties
• 93% had microcephaly
• 93% had feeding difficulties
• 79% had vision abnormalities
• 67% had seizures
• 46% had an ASD diagnosis
• 61% had stereotyped behaviors
• 31% had anxious behaviors
• 29% had hyperactive behaviors
• 83% had behavioral differences
• 60% had 6 or more symptoms including ASD
• 76% had 6 or more symptoms including broader behavioral difficulties

-Thank you to the team from Bernier Lab for providing this information.


Below is an image from Simons VIP Connect with features and the genomic location of DYRK1A.

DYRK1A Features

About our DYRK1A Warriors:

For Awareness Day, I wanted to show the world that there are positives about our DYRK1A children. Positive you may ask? Many look at the negative when they learn about Jaxson and other children with DYRK1A and their condition. Our children are very, very happy! Despite everything they go through, all of the challenges, they are happy. I think that's one of the reasons that makes this journey so worth while. Jaxson is goofy just like any other child, he loves to play with his big brother's toy cars, he loves pancakes, he loves to be twirled around, and loves jamming to the movie Trolls just like his big brother. And if you talk to any other family they will tell you the same about their child.

Our children are fierce and determined. 

The Importance of Genetic Testing:

I've come across a few families who were having difficulties with getting their insurance to pay for genetic testing. I want to raise awareness of the benefits of having genetic testing done. Having genetic testing done can benefit the family because if it comes back positive they can start looking at prevention, monitoring, or treatment options. Jaxson has been in Physical Therapy since October of last year and it has done wonders for his development. He just recently started walking, unsteady but walking! Feeding Therapy has benefited him as well, before it would take him an hour to drink 2 ounces of milk! Now he's drinking 5-6 ounces of milk in less than 5 to 10 minutes! We are in the process of getting an Occupational Therapist as well. Early intervention is definitely beneficial for our children, so why are these insurance companies denying genetic testing referrals?

Super Jaxson!

Jaxson hanging out in the kiddie pool!

Conclusion:

To conclude this, I ask that you help us raise awareness about DYRK1A. Help us let the world know how proud we are of our children and their accomplishments! Help us educate the world about DYRK1A and the importance of genetic testing!
Please join us on August 21st by adding our DYRK1A Syndrome frame to your Social Media photos!

>>CLICK HERE TO JOIN OUR CAMPAIGN<<

Related Links:

DYRK1A Facebook

DYRK1A.org

Simons VIP Connect

Stress Relief Tips from a Military Spouse and Special Needs Parent

Stress Management is important

We all have stress...

Yes, we all do. We can all have stress with work, with your home, your relationship, your children, friends, money, etc. My stress stems from caring for two boys: a 17 month old special needs and a 5 year old. My husband being away for majority of the year. Starting our PPM (moving ourselves) for our PCS move -- we are relocating to North Carolina. Purging most of our stuff for the move, scrubbing, and cleaning for our move out of our rental home. Waiting to hear if we got the house we put an offer on. I am a full-time student online at Ultimate Medical Academy for Medical Billing and Coding. As you can see there is A LOT this mom is stressing about.

How do you do it? How do you cope? Don't get me wrong there are days that I just want to crawl under a blanket and do nothing -- but I can't. I have two little humans depending on me and my husband depending on me to make our PCS as smooth as possible. I wanted to write about some of the ways I deal with stress on a day to day basis.

Blogging:

Blogging is therapeutic

Blogging in itself can be stressful with all of the technology, templates, domains, and followers but I find it super relaxing. I started blogging back in June to help raise awareness about Jaxson and his rare condition, DYRK1A. There isn't a whole lot of information about it because it's so new in the genetic world. I wanted to write about our journey in hopes to reach someone who is going through the same struggles as us. Even if it helps only one person, that's enough for me. I also wanted to blog about Jaxson and our family to help raise awareness on Rare Chromosome Disorders. It is important to raise awareness in hopes to get the funding and care they all need.

Related: Weight Game : Jaxson's Fight.

I found that doing this was very therapeutic as well. I am writing and getting all of my emotions out, like a journal. I didn't think writing my feelings whether happy or sad would benefit me but I was wrong. If you're feeling stressed I would definitely recommend writing in either a journal or on a blog.

Exercise: 

Family stroll -- Jaxson is napping

I know what you're thinking. Exercise? Really? You're already stressed out and crunched for time, how could you possibly fit it in? Prior to having children I use to work out about 1.5 to 2 hours a day for maybe 5 to 6 days a week. Now I'm lucky to get that 30-45 minutes for a work out so I began doing Crossfit type workouts, or WODs, stretching/yoga, and/or walking.. ANYTHING to get 30 minutes of extracurricular activity in. After I exercise I always feel energized and ready to go, but when I didn't work out for a few days I can definitely feel it. I felt tired all the time, moody, and stressed out.

According to Anxiety and Depression Association of America, "Scientists have found that regular participation in aerobic exercise has been shown to decrease overall levels of tension, elevate and stabilize mood, improve sleep, and improve self-esteem. Even five minutes of aerobic exercise can stimulate anti-anxiety effects (Physical Activity Reduces Stress, 2018)."

Or like Elle Woods says...

via GIPHY

So tighten up them sneakers and get out there!

Respite Care:

Daycare or Respite Care is fantastic!

I've been fortunate enough to qualify for Respite Care because of Jaxson's EFMP level of need through the USMC. I qualify for 20 hours of Respite Care a month and I'm so thankful for that. It has helped me catch up on my reading for school work and to allow some "me time" as well. Even if you don't qualify for Respite Care, talk to a friend or family member and see if they can give you some assistance for a couple hours. It is important to have you time.

Support Groups:

Support is important

I was fortunate enough to find a support page for Jaxson's rare diagnosis the first day we got the call. It was great knowing we weren't alone with this journey, and we have our own small tribe of friends and family in our corner. They helped with questions our geneticist couldn't answer and gave us an idea of where and how Jaxson will be from years to come.

Related: 200 Strong. 

There are support pages for military spouses on Facebook as well, if you have questions regarding a PCS move, daycare questions, jobs, anything and everything they're there to help in anyway they can!

What I'm trying to say to fellow military spouses and special needs parents, take care of yourself. Go out there and run, go grab a coffee with a friend, talk to a specialist, DO SOMETHING! You can't except to take care of your littles if you're too stressed out.

How do you find relief when you're stressed? Let me know below!

Life as a Rare Chromosome Parent

I'm going to get a little real with you all...

If you talk to any parent who has a child with Special Needs or a Rare Diagnosis, a lot of them will tell you about their feelings with anxiety, depression, and secondary trauma. I have experienced ALL of these feelings or symptoms. I only shared my feelings with a select few so this might come off as a shock--"I didn't know you felt that way."

Anxiety

"A feeling of worry, nervousness, or unease. - Dictionary."

Anxiety

I had anxiety prior to this but it was magnified after my pregnancy and delivery of Jaxson. As most of my readers know, I had a high risk pregnancy and Jaxson was in and out of the hospital the first six months of life. I took him to so many different specialists, so many well-baby visits. I was frequently worried about something terrible happening, I didn't like to go out of the house, I was angry a lot, quick to get angry.. I didn't feel like myself. I especially felt like such a jerk and bad mom because I was so short with my oldest son. Every little thing he did I freaked out because I didn't want him to wake the baby, hurt the baby, get the baby sick, etc.

Depression

How to recognize the signs here (Depression in Parents of Children with Special Needs).

Depression is real

Some may wonder what did you possibly have to be depressed about? You have an amazing support system, amazing husband, beautiful family, etc.. Despite having all of these things, a person can still have some form of depression. My depression stemmed from having a child who was in and out of the hospital because he wasn't thriving and frequently ill. I felt helpless because I couldn't help him, I tried everything, and yet he wasn't thriving. I thought I had failed him as a mother.

I was up every other hour pumping furiously, tracking his consumption, thickening his feeds per feeding therapists, I literally did everything. I pumped an entire chest freezer full of milk that he couldn't drink because of his severe Reflux/GERD, I ended up donating it all to a patient I met working at the Chiropractic Office. That made me feel as if I was a failure as well, I pumped ALL of this milk for him to drink and he couldn't, he couldn't thrive off of my milk.

We did have great friends who were able to drop in and check on us during these difficult days. I'm thankful each and everyday for them. Why? Because we are a military family and our parents, siblings, and even cousins are not nearby. Friends are everything to us, they're part of our family.

Reach out to someone who is going through a rough time with their special needs children or any difficult part of their life. Trust me when I say it will mean a lot to them, even if it's just sitting in with them or something simple as bringing coffee.

Secondary Trauma

Secondary trauma, yes. You can have that too as a parent with a chronically sick, special needs, and rare chromosome child. Most people think that you can only have PTSD when you're away to war--that's not the case. Having frequent anxiety because I have a child with special needs and was in and out of the hospital can trigger secondary trauma. Whenever I had to make an appointment for Jaxson or went in for an appointment I got this anxious feeling. Don't get me wrong, he's thriving now and everything is going well thus far but I have that constant worry that he may be admitted again or he will stop thriving.

I also worry about my oldest son. A few months ago I ran him to both the Naval Hospital Urgent Care and then Emergency Room at Sacred Heart because he was having severe pain in his side. I was scared and anxious that it was something serious, something life threatening. I was so blinded by fear! Thankfully it wasn't anything serious, he was just backed up and needed an enema (poor guy).

Symptoms of Secondary Trauma:

• Chronic fatigue
• Sadness
• Anger
• Poor concentration
• Second guessing
• Emotional exhaustion
• Fearfullness
• etc. 

I wanted to share my experiences of these emotions in hopes to help another. These feelings are normal when you have a child that isn't thriving, seeing multiple doctors every week, chasing diagnosis after diagnosis, all the therapy, etc. YOU ARE NOT ALONE. The fist step is to admit and talk to someone, it will get better over time.

Our First Flight!

DISCLOSURE: As an Amazon Associate I earn from qualifying purchases.

Boy let me tell you how nervous I was prepping for this flight! I have flown before, many, many times before. I was an Air Force brat who PCS'd every few years, flown with my oldest a couple times... I'm seasoned when it comes to flying.

HOWEVER.. Flying with TWO children and ONE with Special Needs? That had my stomach in knots. I made sure I packed enough snacks of fishies, veggie straws, formula, and packed some toys and my son's Kindle Fire tablet.

I was a sweaty mess when we got to the gate.. got onto the plane and the stewardess looked at me with disbelief and asked: "Do you have anyone to help you?" I shook my head no and kept on trucking to our row of seats at the back of the plane.

I didn't have have time to stop and purchase water after going through TSA so I asked the stewardess for a bottle of water. She gave me a HUGE bottle and recommended that I had something for him to suck on during take off..

Made me even more nervous.

I had his bottle prepped and ready, JJ playing his Kindle Fire, and the plane started to move. Then the plane started going faster and faster.. then the ascend. And you know what Jaxson did? He LAUGHED.

Yes, you read correctly, he LAUGHED.

He even laughed during the DESCEND.

I don't know if it was a fluke or what but I hope our flight back to Florida is a breeze too!

Things Not to Say to a Special Needs Parent

Things NOT to Say to a Special Needs Parent....

DISCLAIMER: I am NOT writing this to offend anyone. I AM writing this to show awareness and to be mindful of what we say to Special Needs parents. I asked around a Facebook page today and asked what phrases or words people (friends, family, and strangers) have said that upset them... 

When we were at the Naval Hospital in the very beginning, Jaxson was about three months old and this older lady strikes up a conversation with me. I know she meant well but when she asked how old he was and I replied with: "Three months old," she gave me this look. She thought he was ONE month old, not THREE months old. I know she didn't KNOW that our baby wasn't thriving but it made me feel upset nonetheless. At three months old he was barely a little over his birth weight of 6 lbs 10 oz.

When I tell new people about Jaxson's Rare Chromosome disorder I get a lot of crickets or blank stares. It's not intentional, I know that, it's hard to comprehend--I'm even having a hard time learning about it myself. JUST SO MUCH INFORMATION! I love that I have been able to find a special tribe that understands this journey of ours along with the outpouring of love and support from our friends and families.

"He'll get better or he will outgrow it.."
Unfortunately with certain Rare Genetic disorders is that they aren't going to get better like someone would from an illness or outgrow it like a child outgrows training wheels. Our warriors just learn to LIVE and ADAPT to their disabilities. Jaxson surprises us every single day with his accomplishments!

"Your child doesn't look sick or he doesn't look autistic.."
I know it's meant to be nice but in all honesty, it really isn't. When someone tells you about their child and about their Special Needs or Rare Genetic Disorder, please don't tell them they do not look sick, they look normal, or happy. A Special Needs child and a child with a Rare Genetic disorder do not fit a specific "mold" or "one size fits all" so to speak. Two children can have the same genetic disorder but exhibit different symptoms and features.

"How old is he? ...Really he is?"
Like most of the children with Special Needs or Rare Genetic disorder, Jaxson is developmentally delayed and speech delayed. His physical therapist stated that he is at about 8/9 months delayed so that would put him at about a 8/9 month old child level based on that diagnosis. So yes, he acts and appears to be younger then he is but he is 16 months old. I know this is unintentional like the Naval Hospital incident but it still makes me and others upset when are children are compared to others their age.

"Have you tried changing their diet..?"
Yes. Yes we have. Jaxson has mild dysphagia which makes it difficult to swallow, he has come a long way with Feeding Therapy but it still lingers. Because of his Rare Genetic disorder, we aren't sure if it's going to be a temporary thing or if it's going to be long-term. Children with G tubes, NG tubes, etc. They're on there for many different reasons, and asking them if changing their diet or have you tried changing your child's diet isn't something they want to hear. Like most, they've exhausted every possible avenue prior to having their children undergo life saving surgery for a feeding tube.

"He/She doesn't act like so and so's child.."
I haven't dealt with this personally but a couple of moms on the Facebook page have and nothing is more disheartening or upsetting to hear that your child is anything but "normal." Please don't compare Special Needs children to other children.

I know I am super POST HAPPY the last couple days. I just really enjoy writing for this blog.. it feels very therapeutic.. like I'm finally lifting all this stress off of my shoulders. I hope I will be able to help someone else who is struggling for answers.

Want to share your experiences with me? Please leave a comment or message me, I would love to hear from you.

Inchstones Not Milestones

What are Inchstones?

Like most families I celebrated all of the typical milestones with my oldest, JJ. He reached all of his milestones early.. he crawled by five months, he walked by eleven months, cut his first tooth by seven months, he upgraded to a sippy cup by nine months, and so on and so forth.

So what does inchstones mean? Let's do some math shall we (not my strong suit so bear with me lol):

An inch is an inch.
And 36,650 inches make a mile.

An inch is smaller than a mile but with a special needs child you celebrate every. single. achievement. No matter how small.

No longer needing thickened feeds, consume a 5 oz bottle in less then five minutes (use to take him an hour to consume one whole ounce), and eat small finger/table foods and snacks.

Jaxson just recently started to take two to four steps unassisted AND standing for a couple seconds before plopping down. HUGE ACHIEVEMENTS. Just six months ago he started to army crawl, then he started to crawl on all fours and sit up four months ago, pull up to stand and cut his first tooth three months ago.. and now look at him, 16 months old and taking his first unsteady step.

Potato baby no more!

Pushing our vacuum around