Here is Eli from about 7 years ago when I had started an in-home ABA and Floortime Approach programs with him.
He was so tiny!
You can also tell that video was nowhere near as good as it is now!
These programs were a lot of work on both parts and helped get him where he is now.
I had to start from scratch.. just the basics.
I started out with teaching Eli how to sit when asked, eye contact, and then moved on to things like showing him how to play pretend, throw a ball, and more.
It is so amazing to see how far he has come.
At the time I used an online ABA program that was available to parents for a monthly subscription, now it is only available to school districts and they have gotten rid of the parent portal. I think at the time, they just didn’t get enough people joining.
The great thing about it was that they had doctor’s and BCBA’s actually showing video examples of how to proceed with your child for each exercise, they gave you paperwork to print off to keep track of responses, and they had an online area where you could enter all the information you collected, so you could see how your child was progressing over time.
I did contact them, they said that as of right now they don’t have any intentions to bring the parent portal back… but that it didn’t mean they wouldn’t in the future.
As Autism Lion grows, I will be contacting them again.
Personally, I do believe we need to be able to teach our children within the comfort of our own homes. There are too many children not getting the appropriate services because of lack of finances, funding, insurance, long waitlists, and more.
This Kid right here.
He just amazes me.
This is Carter, he is Eli’s brother. He is currently 11 years old going on 30.
During the weekday, I usually pick him up from school and we head to our local grocery store on our way home to pick up something to make for dinner. It’s just a little thing we like to do together.
Yesterday, I picked him up and we proceeded to go to our favorite little local grocery store right around the corner from our house. Pasta was sounding delicious for dinner that evening.
As we walked down the isles gathering our things, Carter spotted a young male walking and skipping down the isles by himself talking and singing away. It was noticeable he had down syndrome and Carter was worried that he was all alone. The next thing I knew, Carter had made his way over to this very robust free-spirited young man and started talking to him. They hung out together for the whole rest of our shopping trip.
At checkout, he hung out with us and when we were done we said goodbye to him and went our way.
When we left, Carter said that his grandma was in the hospital, and he was hanging out at the store with someone who I guess worked there.
After my son finished telling me all the things they talked about and how cool and sweet he thought he was, his little face got serious.
Mom? He asked me. Why were other people giving him disgusted looks while he was trying to talk to them or while he was just skipping down the aisles singing? Why were they ignoring him?
It reminded me once again how insanely proud I am of my son.
I told him that yes, as awful as it is, a few my be disgusted, but some people feel nervous around people with special needs, they don’t know how to act. They don’t know how to not be weird, they weren’t taught.
He said that’s ridiculous! What, like they are scared? Yes, I told him.. I guess in a way, some people are. Carter just couldn’t wrap his head around it. How can they be scared of him when he is a human being just like us?
I told him “See this one of the many reasons you are special. You have such a kind heart Carter, and you are right, he is no different from you and me. You have the privilege to have Eli as a brother, you know what it is like to be around your brother who has special needs. You see first hand what it’s like and how hard your brother works to learn and accomplish certain things.”
“You know that he may do things differently, but he is no different. You my son, will make a difference in the world.”
“BE THE CHANGE YOU WISH TO SEE IN THE WORLD.”—Mahatma Gandhi
Do you have a child with poor Gut Health?
Is your child on a special diet, have Gastritis, Failure to Thrive, or G-tube fed?
This our story.
When Eli was born he had a few different issues, mainly being allergies which doctors first assumed was a bad case of eczema. They also came to the conclusion that he was probably lactose intolerant and was put on a special formula. As he got older, we found out that he was severely allergic to eggs. As Eli started eating more solid foods, he became even more of a picky eater and by the age of 3.5 years old, wasn’t even eating at all.
After multiple hospital visits to our local children’s hospital, feeding therapy that didn’t work and would end up in meltdowns (because my son couldn’t verbalize what was going on or how he was feeling), the doctors diagnosed Eli with failure to thrive. They first tried putting a tube down his nose… You can only imagine how that went. It didn’t. So, they then opted for putting a Mic-Key button in. He went under surgery and it was placed.
Eli had many issues still and had to be put on special formula so he wouldn’t throw up the tube feedings. At that time, I even tried fresh and whole foods that were blended and put through his tube for extra nutrition (under doctor guidance) and hopefully kickstart his system to want to eat.
None of it seemed to really work and I always felt like something was still just not quite right.
Eli was scheduled to be fed his formula at night so he could get most of his nutrition in since he had to be fed in small amounts so he could keep it down. One night, his Mic-Key button balloon that holds the button in place malfunctioned while he was sleeping and his G-Tube came out.
I tried replacing it, but it wouldn’t budge. So, off to the hospital, we went again.
While at the hospital, the ER doctor tried using a metal looking rod called a “spacer” to open up the site and place the G-tube back in. Eli was screaming… I asked him to stop, I started raising my voice at him, and as I did he kept stating he was almost there and with force pushed the spacer in. After, he inserted the Mic-Key button back in place and sent Eli off to imaging to make sure that it was placed right. I remember just being so furious with this ER doctor that I could hardly breathe.
While I was waiting, the GI doctor came out and said that Eli needed to go into surgery as he led me to see my son that had just been through so much.
While sitting on the bed next to my son the doctor seemed a little panicked as he told me they needed to leave right away and that he would update me.
He said that my son was internally bleeding and that they needed to go in and stop it. He said when the ER doctor pushed the spacer through it somehow went past the initial surgical opening which created almost a new wound that resulted in internal bleeding.
While they whisked him away, a nurse came and got me and Carter who was very young at the time and took us to the Ronald McDonald House where we waited.
I felt my entire world just crashing around me. Like I couldn’t breathe. I just sat there in shock and nonstop tears just flowed down my face.
It felt like a lifetime for the doctor to come back. I remember being so panicked that he might come out with bad news. I felt like I was suffocating.
When the doctor finally came back from surgery, he said they were able to stop the bleeding and fix the wound, and that Eli was going to be okay.
Eli was given time to heal and then a new Mic-Key button was placed.
Of course, no more night feedings were given and we switched to days, having to feed Eli every two hours. I received nursing care to help with it…. My son’s quality of life was poor. We tried an automatic pump for school but Eli just couldn’t handle using it. It made noise, and the constant slow flow I think felt weird to him. We tried having the school nurse give feedings but for my autistic son, it was all too much so I decided to homeschool him for a while.
When Eli was about 7 years old, I came across an Autism Center that had opened up about 2.5 hours away from where I lived. I made an appointment for Eli and took him to see if they could help me find some answers or services to help my son. Because a lot of children on the spectrum seem to have gut issues, one of the things they hooked us up with was a GI doctor.
When Eli’s appointment finally neared, We took the trip back out and met with the doctor. He wanted to perform an outpatient Endoscopy procedure. So, we went home and patiently waited for his appointment.
On appointment day, we once again took the drive out and had the procedure done. The doctor came out with some absolutely unbelievable news and photos. Eli had Severe Gastritis. So severe, it looked like it had been like that for a very very long time. His stomach and throat were so inflamed, and he had scar tissue.
The Dr. said the chances were likely that my son never had Failure to Thrive in the first place, but since the hospital never checked for Gastritis and just opted for a G-tube, he now does have Failure to Thrive and severe gastritis.
The absolute agony my heart felt from hearing this. This meant that my son was in pain and suffering for such a long time. I was so angry, I was nauseous. The doctor put him on Prevacid to treat it.
Really? After all this time? An anti-acid capsule is what he needs?
When we had to switch back to the local hospital, I remember sitting around a table with the doctors discussing Eli’s care and I asked the doctor why Eli hadn’t been given an outpatient procedure like that? She explained to me that “They just don’t give outpatient procedures like that to children that young”. I expressed to her that this one decision to just assume what it was, cost my child years of discomfort. I later called the hospital and asked for a new doctor. I told them the situation and they obliged. Eli’s next doctor was a really great GI doctor that helped get Eli where he is today. A year or so later he went through another outpatient endoscopy due to having issues again and they upped his dose of Prevacid which seemed to help take care of the situation.
A few years later, after Eli had been constantly treated for Gastritis and after a lot of feeding therapy, we were able to take the Mic-Key button out for good, just a few days after he turned 9. That day is a day I will never forget! The excitement of all of this being behind us, for my son to get rid of what he probably never should have had in the first place.
Eli has a scar from the G-Tube that looks like an extra belly button, it bothered him at first… but he now seems used to it being there.
Eli still to this day has stomach issues but we manage them and he is on Prevacid twice daily for gastritis. I was told he would probably need to be on it for the rest of his life. Medication twice a day and an outpatient procedure sounds like a simpler plan than what he went through.
I am sure that the doctors who initially diagnosed my son were doing what they thought was right … the right diagnosis, the right protocol. Maybe they weren’t well versed in Autism (We have come so far even from then!), or that a 3 year old, someone that young could have gut issues. At about the same time Eli did go into the hospital with an anaphylactic episode where they tested him for a full panel of allergies. The results came back quite extensive, so you might think they would have seen there was something else going on besides Failure to Thrive.
Because Eli has sensory issues and was non-verbal, he was never able to tell us or portray it in a way that we would know his tummy hurt. He seems to feel pain differently and his sensitivities are just different. He does seem to have gotten better over the years with things as he has gotten older, but I always find myself trying to guess, take his temperature, ask if he feels okay, ask him to say “yes” or “no”.
We are our children’s biggest advocates. We aren’t perfect, and professionals aren’t always right either. It is good to get a second opinion, even if it sounds right.
It doesn’t matter if it is a #1 rated hospital, doctor’s office, etc.
There are so, so many times I have cried to God about this very situation and tried to make sense of it all. Why did it take so long to find the right doctor to know what to look for? Why did my son have to suffer? If anything, I truly hope my son’s story helps someone else.
Advocate. Advocate. Advocate. If you feel something isn’t quite right, keep searching. Even if it takes a few years to find the answer. It helped save my son from many many long years of pain and misdiagnosis.
I really hope that Eli’s story can help raise awareness. Things aren’t always what they seem… and sometimes protocol does need to be changed.
Meltdowns are hard.
Meltdowns, as your child gets older and into their teens and adulthood, are extremely hard.
You want to keep them safe, keep yourself safe, and everything around you safe.
Eli has behavioral issues that just take over at times. His aggression seems to stem from his Anxiety and then not being able to express himself and communicate.
So we constantly talk and communicate.
By repeating and communicating over and over again, it helps to stick with Eli. You will notice by the end of our chat, Eli was able to answer a few things he couldn’t before. You could also tell he was quite sick of me… I think I saw an eye roll at one point lol!
For us, it is always better to use calming techniques first and then discuss the situation later.
Then, I will recreate what the trigger was in a controlled situation to help Eli get past it, and grow from it so it isn’t an issue in the future.
When Eli was little, I couldn’t talk to him… there was a huge communication barrier. He would just scream. So I would keep it short and pretty much go straight into the exercises.
There was a time I didn’t think any of it was working, but I just kept doing it.
What could I possibly lose? Nothing.
What could I possibly gain? Everything.
So after my little talk with Mr. E about his behavior on our Ice Cream outing, I recreated the situation where these behaviors happened, but in a controlled environment.
I try to make it a positive experience. This helps Eli to understand that maybe next time, he can use his “big words”, and try to control his anxiety and frustration in a different way.
If you didn’t watch our previous conversation video “Ice Cream Mishap 1 of 2” make sure you do so you can see the process!
I am so incredibly proud of the way he handled himself this time!
Sensory Disorder, Allergies, Gastritis, Autism, Anxiety.
All of these things can make for what some might refer to as a picky eater. And within good reason I believe.
Cooking activities are a great way to help your child get acclimated to new food items. Especially if you start with no intentions of making them taste or eat it.
Now, I know that sounds like the opposite of what you want to happen, but by multiple exposure alone, it helps desensitize and make non preferred foods seem less scary.
I incorporate cooking at home from time to time, and Eli’s school also incorporates cooking as well. Eli loves cooking. Whether he eats it or not, it helps to desensitize him.
I usually pick recipes of things he likes or will eat, and occasionally add in something new. If we are cooking dinner, I make sure to prepare for it early enough so there is no rush, and I have some sort of light snack, but nothing that will ruin his dinner.
Eli loves the satisfaction of the process. The family sitting down to eat what he helped cook, especially if it is a favorite meal.
We have worked up to this though.
If you are just starting out, here is a great read with tips from Autism Nutritionist Jenny Friedman.
“Fun Cooking Activities for Kids with Autism”: https://www.jennyfriedmannutrition.com/blog/cooking-with-an-autistic-child
I love this kiddo so much.
Last night was a very sad evening.
What was supposed to be a fun time ended with our hearts bruised, heavy, and sad.
Autism aggression is a real thing.
It can be a very scary thing.
It needs to be talked about.
Sometimes it comes on so fast, sometimes you can’t make it better or help make sense of things until it is over.
Sometimes things break and shatter, and nothing feels okay. It can be heartbreaking. The severity of it can be so much that you pray it doesn’t end in a wreck or a hospital visit.
I know we are not the only family dealing with this.
The only thing you can do is pick yourself back up, work and learn from mistakes, and try, try again.
You pray next time it will be just a little less scary.
For Eli, working on the thing that triggered the aggressive behavior and desensitize him from it, along with a LOT of conversations and open communication is the only way to help move past to make sure it hopefully doesn’t happen again.
Eli’s aggression comes from lack of communication, an anxiety disorder, and anger that flares up very quickly that makes him want to attack.
We will always work on these things every single day, giving him the tools to calm himself and express himself in a more appropriate manner.
Eli has come so far. Even though his aggressive attacks might be farther apart, the fact that he is getting bigger, makes it much more destructive.
Communicating by the use of aggression is never okay. I know Eli is capable of learning to verbally communicate and work on not getting to that “seeing red” point.
I refuse to give up or believe that he can’t overcome this. I believe he can.
As I watch Eli play, I am thinking about how sweet he is. How lovable, how innocent, how funny, and how cute he is.
My son just turned 14, but mentally he is probably more around the age of 3-5.
It’s hard to believe that he will be old enough in three years to walk out the front door and unless I have power of attorney, there is nothing law enforcement can do about it.
The thought of going through this sounds hard, and scary.
At Seventeen, a lot of parents are preparing their teen for what college they want to go to, what they want to major in, and mapping out their journey.
Most Seventeen year olds are driving, have cars, and possibly have a boyfriend or girlfriend.
I will be able to go through these things with Carter, Eli’s little brother… and I am grateful for that. But it breaks my heart that Eli will not be doing these things. Instead, we will be on a path of power of attorney, and deciding whether to keep Eli in school until he is 21. Special needs adult work programs and adult daycares don’t sound appropriate for him either.
Now don’t get me wrong, I thrive on the celebration of every little win and I couldn’t be any more proud of Eli or to be his mother. It just hurts when you can’t give your child everything you have every wanted for them.
I don’t know what it is like to be the sibling to someone with special needs.
I don’t know what it is like to be the “only” sibling of someone with special needs.
But, my youngest does.
Carter loves his brother, even though it’s hard for them to connect most times. He looks out for him at school and even though they fight just the same as other brothers, Carter is always there for him.
Carter and I love to get away sometimes and have mom/son night. Just the two of us, so I can give him ALL of my attention.
I think this is so important.
Last night we went and saw the movie Underwater. Since when did PG13 movies get so scary? Or am I just getting older?! 😂
We always look forward to the next little outing and can’t wait to share these with you guys!
A little bit about Carter:
Carter is an upbeat 11 year old, and will be 12 in March. He is the youngest in the family and quite the artist. His favorite medium is working with artist’s markers.
He has played baseball in the past but has a passion of starting football, and plans to start flag football this spring.
He is funny and kind, and quite the little jokester. He loves legos and he hopes to be a famous YouTuber some day.
Does your child need the use of headphones to help drown out noise for sensory issues?
For Eli, it all depends on where we are going. If it is loud, we always make sure to have them handy or the poor little guy will be holding his ears the whole time.
Last Night we went to the Kansas City Boat and Sports show. They had a discount for families on Thursday night, and since it was a weeknight, we figured it might not be as packed.
When we parked the car and were ready to head in, I realized we forgot Eli’s Headphones!!!!
Now, if you your kiddo is a “headphone” type kiddo, it’s like a straight panic attack when you realize you don’t have them.
So, We just figured if we go in and it’s to much, we will just leave…. no biggie.
Guys, the place was amazing! It was so sensory friendly, really quiet actually and our whole family had a blast!
The boys each played a reality video game, they were selling the coolest swings you could relax in, and we saw all kinds of boats, fish and more.
Remember me talking about haircuts, how we love Eli’s long hair and it works for him? How others sometimes think Eli is a girl? Well, at one point two female security guards ran us down when Eli and Scott were getting ready to hit the bathroom to inform them that they couldn’t because “she” had to use the girls bathroom.
We explained he is a boy, and I turned to her and said “You know, boys can have long hair too.” She just turned her nose up and walked off.. lol!
(Carter wouldn’t smile for me that stinker 😂, But he did have fun pretending to be super strong holding this boat up!)