Well hello there!

It’s been a minute since I’ve wrote our last blog and so much has happened. Not only for Kellan, but a pandemic has come up since then. Duh! Like you didn’t know.

I wanted to write a quick update about where Kellan is. I had recently found a journal I started a little over a year ago. I had wrote down all of the amazing things Kellan was doing at the time.

As I thought about all he has accomplished in a year I am just amazed! I am not writing to brag. I am not writing to confuse people on why I am so excited for something that seems so small and should be typical. I am not writing for attention.

I am writing for those who are really there to cheer us on. I am writing for those who need hope. I am writing so a year from now we can see where we are. One way I have found hope is reading and listening to others stories. Knowing we aren’t alone in this fight for our kids.

Kellan truly is doing great. Like woah. Yes, he is still considered non verbal and some people like to base how well he is off of that alone. You shouldn’t!

Kellan is 3.5 years old. He can currently write his name, letters, numbers, and shapes by himself. He knows all his colors, numbers, and letters. (In order) Can point to objects I say. He is a technology wizard of some kind. This list can go on. It used to be so minimal. His O.T. said he would do great in school because he enjoys and has a want to learn. Say what? That’s wonderful!

He is such a cuddle bug to his dad and me, but hasn’t been with his sister since he fully regressed. Today he full on grabbed his sister to cuddle. (Insert shocked face)

Kellan had a check up today with his doctor like he does every 3 months. One of the staff gave him a sticker. He gave her the biggest smile. I got a lump in my throat and almost started crying. He took the sticker off but held on to it for a very long time and looked so proud of it.

Some people would be like okay… he got a sticker and enjoyed it like every 3 year old. Big deal. Here is the thing for Kellan we have not experienced that in a very very long time. He acknowledged her with a smile (to him was a thank you) then actually held on to it. Didn’t just throw it on the ground or not acknowledge it at all. He was proud of it!

The boy has been smiling in selfies with me for pictures because he is actually understanding what I am doing. He also likes for me to record him doing his therapies so he can watch it. He giggles and giggles and giggles at himself. It melts me!

We still have a long journey ahead, but we see that light in Kellan again. I want Kellan to talk but honestly I am so happy he is happy. He is learning and keeping up or even excelling in some areas for his age. Obviously, we have areas where he is considered behind like speech.

I will say that finding joy in little things with Kellan has been so good for my soul. Hard? Yes, but I wouldn’t know how wonderful the little things really are. Things that are just an everyday for others are some of Kellan’s obstacles.

We do have hard days. We have worked endlessly for these good days and I am so proud of how hard he works.

We work so hard because one day we won’t be here for him and that’s so hard to think about. I cringe thinking about it. So let’s focus on the now and the more that we do now the more we will see in the future.

I ask that if you have room on your prayer list to pray boldly for Kellan to be in good health and to continue to grow in all areas! His gut is still a struggle for us so if you could pray for his gut health we would greatly appreciate it. We are working hard with his doctor to help him!

I also ask for prayers over our world. Beyond the virus itself people all over are dealing with mental health, suicide, murders, deaths, unemployment, no food on the table, children going hungry, abuse, people being hostile at grocery stores, etc. It has weighed heavy on me where I have had trouble sleeping. Help where you can and pray boldly for our world.

❤ Britt

In short: A fellow autism mom posted about before she realized her child had autism a church she attended denied her child to attend the children’s ministry because they didn’t have someone extra to meet the child’s needs. She was offended because she didn’t even know he had autism at that time.
Before we start I understand if someone is going to be harmed or something else very serious were to happen then I can see where a staff can not provide services. This child was not that.

I’ve been a part of serving in Children’s ministry as an adult for 5 years even though I have taken off the past few months to focus on my family. It’s a big part of whom I am and Gods calling for me. I’ve been a part of the church for about 8 years when Ryan and I wanted to find a church to raise our family in.

I’ve not ever felt so welcomed and loved by another community as much as our church from day one. I started serving when my daughter turned a year old because I wanted to be a part of a ministry who knew the kids in their class by name and made the parents feel comfortable leaving their child in our care while getting their spiritual food.

There have been more children in my class with special needs than I can count. Down syndrome, autism, cerebral palsy, autoimmune disorders, hearing aids with a microphone to talk into to communicate with them, leg braces and a walker. You name it. I wasn’t “qualified” with much special needs education, but I was qualified in LOVE. That’s right LOVE was what I knew to do and that’s what it took. Loving them and making them feel safe. I remember a non-verbal 2-year old who was not happy to be left by her parents gave me a hug and looked right into my eyes with a big smile before she was picked up. It still makes me want to cry and that was years ago. She said so much more with that hug and smile than words ever could.

These children changed my life for the better. I grew relationships with these families and made them feel safe to know I was going to love their kids through that hour.
When Kellan regressed I wouldn’t have been the mom I needed to be without those kids, their warrior parents, or our church. Your kids changed my life for the better. They have worth, they are not a burden, they are world changers!

I thank God he has given me the opportunity to serve these families and to be served by the best church family.

Thank you to all who have been a part of our ups and downs. Who have set down on the classroom floor and prayed over our family. Those who have made us feel safe to leave our non-verbal child with. We can’t do it without you.

We need the diversity in our lives, classrooms, workspace, and so on to make us better people and to know there are other ways to live life than just our own. We don’t have to look the same or act the same to LOVE.

Fear is something I’ve dealt with all my life like everyone else in the world. Fear of failure, taking the next step, losing a family member/ friend, not being enough, and the lists goes on and on.

Since, our son regressed into autism I’ve had a lot of fear. Our boy went from a bubbly personality to screaming in pain. Being a momma’s boy to not acknowledging I existed.

I have a video of Kellan screaming while rolling his body at a very quick speed and sometimes throwing his head back thankfully on a soft part of our couch and not the hard floor. He wouldn’t let me touch him. It truly looks like there was something that took over his body, but it was a part of our everyday life until we had test done to help.

Just to let you know he is a momma’s boy and enjoys life again. Still hasn’t gain speech back but our boy is HAPPY. We are peeling back the layers that controlled him for so long. We went from a diagnosis that would have been extremely severe autism to moderate in a year time and I think that’s stinking amazing.

Now to the point of this blog.

Lately, on the news I have read multiple stories of teachers and helpers at schools physically kicking children with autism while they are on the ground. Tying children up face down ultimately killing them. Dragging them down stairs.

People who are supposed to be trained. If that doesn’t put fear in you, I don’t know what does, but my list consists of more than just this… it just triggers my fears when these stories pop up.

My fear list for Kellan:

* What if he is in the care of someone else still non-verbal and horribly mistreated?

* What if we never hear sweet Kellan’s voice again?

* What if he gets bullied and beat up for being different?

* What if he never gets to experience a real relationship/ friendship?

* What if he regressed again to living in agony?

* what’s going to happen to Kellan if we are long gone?

* What if we lose our friends in this journey?

Some people think I am a pretty positive person 99% of the time, but those are the human thoughts I’ve had. It’s been a choice to think of this next list I’ve created in my mind. Even if, people look at me crazy.

The positive list:

* What if he is transformed by the help of someone he is in care of?

* What if Kellan’s speech does come back, and he becomes a professional speaker?

* What if Kellan stands up for his peers and himself?

* What if he is a social butterfly and has more friends than I ever had? Or gets married and has children?

* What if he continued to heal and blow people away with his progress?

* What if when we are long gone he has a life of his own already created?

* What if our friends are transformed by our journey, and we meet the most amazing friends along the way?

Yeah… tears are rolling down my eyes as I type this. The hope I hold on to that I put in cement so no one can try to take it away from me. Am I crazy? No. I know reality. Unfortunately I’ve gotten some big reality checks in life, but I always hold on to hope in every situation.

Even if, Kellan never talks again or any of the other fears arise we will do everything in our power to help give Kellan the best life. No one is more obsessed with our boy than us. His big sister gushes over him everyday.

Of course fear WILL creep into our lives, but I am holding on to hope even if no one likes it or thinks I am crazy.

I don’t know what God’s purpose is for Kellan, but I know it’s not for harm but for good, hope, and a future!

The video below is a video I watched at the beginning of our journey and I knew this was the kind of mom I wanted to be for our sweet boy. The love and appreciation this grown man (Kerry Magro) has for his mother is so greatly expressed.

https://m.youtube.com/watch?v=fV6p6ANCTF4

Sometimes I feel like people look at my son differently. I like different because it would be a really boring world if we were all the same. I am not talking about that kind of different. I am talking about they look at him differently like he isn’t capable of much or there is no hope. That it’s strange that he gets overly excited and makes funny sounds as he jumps up and down, he is non-verbal, he won’t always look you in the eyes or acknowledge you, and sometimes his body isn’t able to do what he would like it to.

He can put numbers in order 1-20 (probably higher if I would give him more numbers), he can put the alphabet in order, and If he is on his tablet he is 10 times more tech savvy than I’ll ever be. When he gets tablet time he is tracing letters, putting words into sentences, spelling, simple math, etc. He loves art and music.

I understand that as his mother I probably will see all the things he can do over what he doesn’t yet. You see that? Yet! I know he will!

It is pretty crazy that as a baby he could wave on cue and now that is something we are working on gaining back after his huge regression. Something that simple, but he is able to do so many educational things that are typical of an almost 3 year old. He is a sensory seeker. Loud noises don’t bother him, he wants to be hugged/touched, he loves to swing, gives lots of love especially if it can get him out of anything (haha), and just loves any fun sensory things. There are obviously a lot of things that he is still very delayed in.

I had a couple of people share with me a video of a woman who was diagnosed with autism at a young age. She remembered when she was younger being what felt like locked on one side of her brain. She wanted to do and say so many things, but her brain and body couldn’t work together to allow her to do so.

Could you imagine being asked to do something and your body isn’t able to respond? You can hear everything and can’t get words out of your mouth?

You can hear people talk about how you can’t do this or that and you couldn’t defend yourself?

The therapist he has been with for over a year sees how far Kellan has come. He knows it’s not only from therapies, but working on Kellan’s medical issues. We are not going to leave a page unturned to help our boy heal and succeed in life. A lot of people haven’t had the pleasure to experience Kellan’s victories like our little family and his therapists have. To the outside he may seem the same just because he is non-verbal, but he has actually made HUGE progress in so many areas. I believe he will gain back what speech he had and a million more words.

As his momma I whisper in his ear “I know you can talk. I know you are capable of anything. I know God is going to use you to glorify his kingdom.” He always looks me straight in the eyes, smiles, and grabs my neck to bring me in for a kiss. (Cue tears)

The moral of this blog is to help you think differently and to speak kind words over our children, especially those with autism. They can hear you. They are brilliant. Some may be so locked in their own world you are going to have to fight fire to bring them into our world, but they are 100% worth fighting for.

Grace. Something I am trying to instill in myself. Hopefully you find your own grace through this blog.

Right now we are in a season where we have 5-8 appointments a week as a family whole. Some being an hour and forty minutes away for services. NOT including fun things (extra curricular activities) like the cheer clinic my daughter is in this week. These are medical reason alone. I am trying to show myself grace for the things that we would love to do, but can’t squeeze in right now. I’m showing those around us grace as well because we don’t have a clue what another person is going through.

Our life isn’t a typical life for most, but it definitely doesn’t mean our life is any harder than anyone else because it DEFINITELY isn’t! So many people are hurting in this world, and many are SO busy trying to just survive.

For example, when we have 8 appointments a week then are told we need to work on these things at home, have family time, have marriage time, visit everyone around the world, and the list goes on and on my brain wants to explode. Haha like really. Guess what?!? I push myself to exhaustion to meet everyone’s needs and what they think we should be doing or I beat myself up when I don’t do everything expected.

I know y’all can relate! How can we do it all and be it all?!?

Since this new crazy schedule has started I actually haven’t freaked out. I have taken it hour by hour. Appointment by appointment. Am I still a crazy schedule lady? Yes, but I am not making myself sick by thinking about how much we have on our plate this week.

I feel God’s peace more than ever. I feel God’s grace. I am the person God entrusted with this unique life.

Just like God has entrusted you with your unique life. Not one harder than the other, just a different kind of hard.

I might need a good amount of time to schedule hanging out with friends in this season of life. If my husband or kids need me I may not be able to come. If I need my husband home to help me he may not be able to come. It’s not that we won’t hang out again or we can’t hang out that day. Invite us, but also please show us grace as we figure this out and need each other’s help to function as a family whole.

I have always had a caring heart for people, but this new chapter of life has shown me how to love others even better and to have a more understanding heart.

None of us are perfect, and everyone goes through hard seasons of life.

We live in a world where there is so much pressure to be a certain person or to have a certain life. To do it all. To be it all.

Have grace. Be grace. Show grace. Lend grace.

I guarantee we are all doing the best we can.

I think these seasons shape us into the people we are truly meant to be.

With this blog I wanted to share with you what Kellan’s formal diagnosis is. 

It took about 8 months to get into an Autism Center in our state to get a formal diagnosis for Kellan. This isn’t the only place you can get a formal diagnosis, but they all have about the same wait time. 

The evaluation was almost 4 hours long. First, the Doctor interviewed Ryan and I as she observed Kellan. Then, she did tests with Kellan as I filled out evaluation questions that felt like 200 pages long.

After the evaluation was over, we discussed what we thought he would be diagnosed with. He was in a bad flare the day of the test, but mostly I think from interviewing us and watching Kellan she still got a good idea of how he is in a flare and not. 

Two weeks later, Kellan and I met with the Doctor. She put Kellan’s scores on a graph. Kellan had a couple high scores and some super low scores. The graph looked a lot like a roller coaster. This is common with children on the spectrum. 

I told her that as soon as he came out of this flare he used a spoon like it was no big deal, and she rejoiced with us! She talked about how amazing Kellan is at transitions, numbers, letters, puzzles, and his grip with crayons while coloring. It was a pleasant meeting because I already knew for a year Kellan regressed into autism. I am sure for a lot of parents this can be a very hard meeting to attend. A life changing one. I remember those first few months, and how hard it was trying to get all the resources he needed not only in therapies, but medically.

The Doctor already knew we were doing everything that she would recommend. She gave the recommendations in our diagnostic papers, and the meeting was very easy on both our parts. 

Diagnostic Impressions in short: Autism Spectrum Disorder Level 2 (Moderate Autism)

Level 1 is high functioning, level 2 is moderate, and level 3 is low functioning. As a parent this could sound super scary, but if he would have been tested a year ago when his regression was dramatic I know without a doubt he would have been Level 3. Our therapist that has been with us from the beginning, that works for the state, said Kellan isn’t even the same kid. He has come so far from those super dark times of figuring out what was going on. 

The Doctor said “I have hope that this won’t always be Kellan’s diagnosis.” She believes with hard work Kellan can catch up on his delays.  As his mom I believe he will move mountains, and God will help us get there. 

He will be re-evaluated in 2-3 years after all his hard work, and we will see how far he has come along! 

We love all the support, love, and prayers! Thank you to all our family and friends for being here for us! 

I thought I would share a few of Kellan’s baby pictures and some with his sister because they are both so stinkin’ cute!! I’m seeing their bond form again!

Kellan at 4 months old.

Kellan at 5 months

So proud of the build a bears they made!

He was such happy a baby!

Anxiety.

A word(and feeling) I’ve been pretty familiar with since the age of 15.

Since I have anxiety surrounding my son’s medical journey it was extremely scary to share Kellan’s story. Not everyone is going to understand or maybe even like our story.

Our church has been focusing on anxiety.

It’s something people are struggling with day in and day out.

Here are some mistakes we make in these times of anxiety that our pastor shared with us:

1. Running ourselves into the ground. Check (doing it ALL and not asking for help.)

2. Shut people out. Check (Live in fear of sharing our story.)

3. Focus on the negative. Check (When in a rut—Only thinking about Kellan’s medical reports and Kellan having rough days.)

4. We forget God. (Though I always know God’s there I can without thought put anxiety in front.)

I have to tell myself “Brittany, you can’t change what the the test results say about what is happening in your son’s body. You can only change what you are doing with those results to make him better. You need to focus on God and what His calling is for your family. Even if you look crazy. You can’t run away from what God is putting on your heart just because you live in fear of what others think.”

Today our doctor said “These test results are accurate/legitimate.” I didn’t even ask nor did I believe that they weren’t accurate, but it was just something I needed to hear. It doesn’t matter what others think because here are the answers. They are accurate. Now how are you going to use this season of life to help Kellan, grow in God, and help others?

God led us to our doctor. Like in the biggest here’s your sign kind of way! He knew who we needed. He always does this, but I’m always in a panic about everything to slow down and actually let God do His job.

Why do I continue to try to run the show? Every single time He takes us right where we need to be.

Why do we fight it so bad?

Why did I fight sharing our story?

Why did I live in fear of others who don’t know us from the inside out like God does?!?

Why do I let anxiety cripple my destiny, my purpose, my freedom?

My daughter started a new school year and our last name looks nothing like it’s pronounced!!!! Her teacher pronounced it just like it looks like it should be pronounced. Ha ha ha (I did too before I really knew my husband.) Maylee told me that she would rather go by her “new” last name than to tell her teacher how to pronounce it. She really likes her teacher and I could tell by talking to her that she was anxious to correct her. I could have just wrote a note to her teacher explaining how to pronounce our last name but instead I encouraged Maylee to use her voice and kindly let her know what her “real” last name is. After I picked Maylee up from school today she said “I told my teacher how to say my last name!”

Y’all I could have pulled over and gave her the biggest hug! She over came her fear. Yes, this is a 5 year old type of fear but we can all relate!

We would rather take the path of least resistance, but that’s only letting our fear and anxiety take over our lives.

I am the worst of talking well about myself. As much as I am lifting others up I am tearing myself down on how I can do more. I’ve had many of meetings with those involved in early intervention and autism. They praise me of my hard work. Encouraging me when I am ready to join their programs to be a mentor. This could be my purpose in life but I just have to overcome those 4 mistakes above.

I would encourage you to look at the 4 mistakes above our wonderful pastor blessed us with and see if you are letting anxiety control your life.

Kellan regressed into autism… which means he did meet all milestones as his doctor expected (even more advanced in some areas) and had a few words before one. Then Kellan lost his speech and some milestones he had already achieved. At 18 months he just up and forgot what breastfeeding was and started screaming bloody murder and flopping around like the exorcist one night when I offered. I yelled for my husband crying asking “what’s happening to my baby?!?” He stopped responding to his name, smiled less and less, started stimming, had severe eczema, had terrible reactions, lost eye contact, he went into his own world, and this list goes on.

How did that feel? It felt like we lost our son. It was like grieving who he once was and then having to see him struggle to do things he once did. Though I felt this I also immediately knew I would not EVER put limits on him and we would fight. I was going to get down to the root cause of what was happening medically to his body.

We’ve had tests done and are implementing ways to bring healing in those areas. He’s not able to detox effectively. He has high amounts of heavy metals and environmental toxins in his body so high they are off the charts. They are known to cause cancer, brain damage, or death. He has food allergies and high amounts of bad bacteria in his gut. (There is a gut-brain connection.) Our gut makes up 70% of our immune system and his is over 3 times higher than it should be. He has certain genes known for vitamin and antioxidant deficiencies. These genes have helped us also understand what could be causing issues. He gets so much better then has some flares. We are looking into if PANDAS/PANS is the cause of this.

“Both PANS and PANDAS are associated with infection-triggered autoimmune responses known as “molecular mimicry”. This occurs when our immune system mistakenly attacks normal body tissues because of the structural similarities between a particular molecule on an infectious agent and the molecules in our own body tissues. Rheumatic Fever is one example of molecular mimicry where the immune system is triggered to attack the heart valves in certain individuals after experiencing a strep infection. In PANS and PANDAS, it is believed that something similar occurs where antibodies are triggered to attack a part of the brain called the Basal Ganglia, which is understood to be responsible for movement and behavior.

When some patients are exposed to certain bacteria, viruses or germs, their immune system may go awry, producing autoantibodies that attack not only the invading germs but healthy “receptors” and other targets in the brain. This misguided reaction can result in inflammation in the brain, triggering an abrupt onset of symptoms.”https://www.moleculeralabs.com/pans-and-pandas-overview/

I wish I could share more in-depth of the medical side, but there is so much to his medical story.

He has made amazing progress just from our hard work of healing his body in these areas! He isn’t even the same boy from where we started on this new journey! No eczema and so much more smiles/ happy times. He is breaking limits and changing therapists way of thinking! His pain has purpose! Our pain has purpose! Our boy is amazing…absolutely amazing and he is going to recover and break through every obstacle that comes his way! We will fight every battle with God because he has lead us to our amazing team of experts! We still have a LONG ways to go, but I would love for you to join our journey. The good, the bad, the ugly, and the beauty.

Prayers for healing and comfort to endure what’s ahead is very much welcomed!

This boy is SO loved it’s unreal!

He loves numbers, letters, music, coloring, he is technology savvy, and oh man can I go on and on about how incredible he is. I’m so in love with him and his sister who happens to be the very best sister Kellan could have. Daddy works SO hard so we can provide him the services he needs. We are so thankful for this!

I’m just that definition of Warrior Mom you look up in the autism dictionary. You other autism/special needs moms know what I’m talking about. We have no choice BUT we wouldn’t be anywhere else than front and center of the battle.

The hard days are hard. To see the pain. To see the struggles. The good days… oh the good days let us know we are on the right track to help him in every way!

I love to whisper in his ear “I know you’re still in there. I know you can talk. I know you are so incredibly brilliant! I know your story will help others. I know God is healing you and using you.”

We’ve been doing this journey for a year and not many knew. I wanted us to be knowledgeable about our son’s struggles before we shared with everyone. We are still learning about his body.

If you’ve met one child with autism then you have only met one child with autism. Some of our stories sound the same and others are totally different, but this is our story. I support all individuals stories and we are in this together as a community!

Medical struggles, therapies, we will be sharing it all.

We hope to be a light, but to also be real. Welcome to our world! Welcome into Kellan’s world!