Well, here I am, rounding out the last leg of this journey I began last summer. Back when I made the decision to press pause on my career to really focus on Carter and his health, I didn’t know what the future would hold. I didn’t know what was in store for us. We just knew it had to be done. We had to take the chance for Carter. So, we held on and jumped right in.
In the past 4 months, I’ve taken a break from social media. It was just what I needed. But now, I’m here to give an update on Carter. We have done so much since my last update. I’m not even sure where to start. There’s just so much to write about.
Let’s start at the beginning of this journey……………
The first thing we tried with Carter was a product called CBD oil. It took a while to play with the dosage and find the right amount for him. It seems to keep him calm and a little more focused. Not as irritable. We started this last May and he still takes it everyday. I added a good multivitamin and began research on a good diet to start with.
The next thing was cleaning up his diet. I followed a 10 week plan to the gluten free, casein free diet, which included getting rid of as many artificial ingredients as possible. Goodbye MSG, goodbye dyes, goodbye ingredients I can’t pronounce. He’s completely gluten and casein free, but there are times when he does eat packaged foods. I’m doing my best to make everything from scratch. His diet alone is enough to keep me busy like a full time job. I try to give him as much homemade food as possible. I’ve even made my own shredded cheddar cheese, gummy bears, animal cheese crackers, pop tarts, ice cream, and much more. Now, many of these were a failure. An expensive, time consuming failure. Usually it’s a failure because Carter doesn’t like something. Sometimes he won’t even try it. Other times it’s because it wasn’t really worth making it again. Like the time I tried to make a cereal like Cocoa Puffs. Oh. My. God. That was pretty ridiculous. I was sitting at the table with this big bowl of dough, rolling out these tiny balls of chocolate. Q loves to make fun of me for that. Even though it was ridiculously time consuming and ended up coming out too hard to even bite, I won’t say that I’m not going to make it again. Only because the kids do like to eat the Gluten Free, Vegan cocoa puff cereal I buy. Anything I can make at home that the kids eat, I’m going to try to make. So, I’ll give it one more chance with a new recipe I found. Fingers crossed.
Carter’s palate is still relatively small. I wish I could get him to eat more veggies or anything nutritious I make. Still working on that. He only has an interest in his specific food group (pizza, nuggets, fries, pasta, etc). He’s really only added grilled chicken to his diet, since he went GFCF. I usually have to hide the more nutritious stuff in sauce or freezie pops. I’m constantly in the kitchen. It’s pretty much my office. I’m whipping something up then I’m cleaning everything for the next round. Cooking and cleaning, cooking and cleaning. That takes up a big part of my day.
Besides Carter’s diet, we also made a major purchase to help aid in detoxing Carter. We purchased the Ion Cleanse and it’s been so helpful in getting rid of so many toxins in Carter’s body that he can’t detox alone. Once we started a homeopathic protocol, we’ve noticed that he’s got even more stuff coming out. Yeast, metals, environmental toxins, etc. He really enjoys doing the IonCleanse. When I ask him if he wants to do his foot bath, he says, “foot bath” and he takes off his socks and pulls up his pant legs. He sits there between 35-45 minutes with his Nintendo Switch and detoxes. It was definitely worth it. You can see in the pictures the way the water looked when we first started. He was detoxing some gunk, but once we started our new protocol, it helped him to detox even more! You can clearly see how different the water started to look. It’s crazy to think that nasty stuff is in my kid’s body. But, better out than in!
The other thing he has going on is his therapies. Carter does ABA therapy, which is really helping him manage his behaviors and it’s also helping him learn a lot! He’s also seeing a Chiropractor for Craniosacral therapy. This has helped reduce his anxiety and stress and it benefits his central nervous system. You can even see the chiropractor for headaches! Carter is also doing speech therapy, which has helped with gaining speech and articulation. We also see a DAN/MAPS doctor who kind of oversees Carter’s overall health and progress. We’ve had some tests done to be able to get the big picture of what’s going on with Carter on the inside. His doctor was impressed with everything he had going for him, but he did have some things we needed to work on, obviously. It was just nice to know where to start. I had completely burned myself out when I started this journey trying to learn about biochemistry and genetics and nutrition. I was so thankful to have someone take the reins and tell me what to do. Carter is 9 now, so we don’t have time for me to try to figure it all out myself. We needed to get this healing started ASAP.
So we did.
And it’s been a roller coaster of emotions, as Autism usually is. It’s been so exhausting. It’s been exhilarating. It’s been annoying. It’s been victorious. I’ve felt defeated and let down and I’ve felt inspired and proud. I’ve completely lost my sh!t and I’ve taken it out on Carter and I felt like I was the worse mother in the world. Then I gathered my strength, with the help of all the beautiful, wonderful people around me and I realized I’m only human. I’m a human who isn’t perfect. I’m a mother who is afraid for her child and the unknown. I’m a mother who gets upset when Autism turns our lives upside down and I react. I react and I regret it. I try to learn from it. Patience really is a virtue and I’m trying. Sometimes my fuse is short because I am tired from trying all day. Sometimes my fuse is short because I see bits and pieces of progress and I get greedy and want more and I want it now. And sometimes I have patience. Sometimes I can handle Carter’s meltdowns and his lack of focus and his lack of awareness when I’m in a rush. I hope that sometimes can turn into most times. I want to be patient most times. I would love to be patient all the time, but I think that’s a little unrealistic. This Autism life requires a whole lot of patience. Being able to take a leave from work has really helped me, my family, and most importantly, Carter. It’s been a blessing and I’m so grateful to have been able to do this. But, enough about me, let’s get to Carter’s accomplishments.
We have seen Carter grow so much over these past several months, that there are many times where I just feel so guilty for not making this decision sooner, but it is very expensive! Doctors that aren’t covered by insurance, labs that sometimes aren’t covered by insurance, supplements that aren’t covered by insurance… it all gets paid out of pocket. Not to mention the organic, gluten free food that I buy to really optimize Carter’s health. Not to mention purchasing equipment that has been found to help kids with Autism really flourish. We are willing to do whatever it takes to heal Carter. Our optimal goal is to have him lose his Autism diagnosis. We’ve got a ways to go, but we’ve also come a long way.
Carter has done so many things big and small!
*He’s gaining speech!!!
Carter is doing a lot of talking! Not in the way that we can have a meaningful conversation with him, but we gotta start somewhere! He’s doing a lot of repeating of things that are said. He is learning things, retaining them, and repeating them back. He’s gone from one word answers to multiple word phrases and even complete sentences. He can successfully answer questions about his Personal Information, such as his name, date of birth, age, address, phone number, mommy and daddy’s name, his sister’s names. Not only can he say that, but he’s actually gotten even better with his articulation! He will also make choices by verbalizing and I rarely have to show him physical objects or pictures for him to choose. If he doesn’t want something, he will say, “No, thank you.” He learns a lot from Taylor too! When she talks, he repeats her. It’s amazing and I want more and more and more!
https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FMisForMomNotMaid%2Fvideos%2F10215539264616673%2F&show_text=0&width=267” target=”_blank” rel=”noopener”>See the video here!
At night when it’s time to go to bed, he will tell us, “I want to watch Home Alone one.” And of course, I let him. I used to always say, “Carter, if you can tell me what you want, I’ll let you have it.” And now he does. That’s a cause for a celebration.
Carter doesn’t have as many meltdowns as he used to have. And if he does have one, he’s much easier to calm down. Now, there are times when he’s like the old Carter and I’m like the old me. Thankfully that’s not too often. Sometimes, these improvements in behavior seem so small, that it’s hard to notice. For example, here’s a note I took one day:
*Usually if we put together a puzzle and a piece is missing, he will panic and go into meltdown mode. Today, we had a missing piece and he just ignored it!*
Carter isn’t as rigid in his routines anymore, either. In the morning when we would get ready for school, he used to have to go to the back door, line his heels against the door, then walk to the rug in the living room and line his toes to the rug, then walk around it, blah, blah, blah. He doesn’t do that anymore, which is great when we are in a rush and I have to be patient while I’m screaming on the inside because I don’t want him to have a meltdown. He doesn’t ask to listen to the “Super Why” cd in the car and he doesn’t completely flip out over it. So thankful for that! He doesn’t give us trouble most times at night when it’s time to brush his teeth. If it’s time to turn his game off, he will do it without fussing and giving us a hard time. He turns it off and puts it away. He’s my only kid who actually puts things back where they belong.
Pretend play is not really a thing for a lot of Autistic kids. Carter hasn’t pretended to be an airplane or a firefighter and he hasn’t played “restaurant” and eaten pretend food.
Well, with a little sister like Taylor, Carter is usually a participant in some sort of pretend play. The day Taylor handed him a plate and spoon from her little kitchen set and told him to eat his ice cream, Carter just looked at her like she was crazy. It was a moment I’ll never forget. When he put that spoon to his mouth and made a smacking sound like he was eating, I couldn’t believe it! He looked at us and smirked. I know he was wondering what in the world he was doing. There’s no food on this plate! But he will still pretend to eat when it’s time to play. He also initiates play from time and time and actually acknowledges people around him. He’s gotten really good at playing his Nintendo Switch he got for Christmas. Just like any other kid. The great thing about it is that he’s learning how to use the game and how to play the game and he will turn it off when his time is up (most times). Carter is a very playful kid. He likes to be chased around and tickled. He even started riding a bike! Of course we started with training wheels, but the fact that he was steering and pedaling at the same time was such an accomplishment! His coordination is better and so is his strength. He can throw and catch a ball too. He used to just plop the ball in front of him, but now he will throw it overhand. It’s amazing.
So, Carter has never been one to acknowledge the feelings of others. If you pretend to be sad, he doesn’t understand that. He doesn’t go and try to comfort you or show concern. But…… I’ve noticed when Taylor is upset or fussing about something, (which is often, as she is a little drama queen) Carter tries to comfort her. In the car, he reaches over to her and touches her hair or her face and he holds her hand. One day I was in the shower and heard Taylor fussing and when I got out to check on her, Carter had already come in to save the day! He was sitting next to her in the bed, holding her arm and comforting her. It was so incredibly sweet. Especially because Carter has never done that before. He was being a big brother and protecting his baby sister. Carter shows more acknowledgment to others too. He has better eye contact and when you tell him hi or bye, he does the same.
*And some random stuff!
Carter can open a car door, put his own seat belt on and close his door.
He tries to wipe his own butt (it’s not very helpful though haha)
He enjoys showers now, where he used to be terrified.
I can usually get him to try out a new bathroom as long as I have time and patience! (Carter has MAJOR issues with bathrooms)
He comprehends more stuff now and can follow directions.
He can put on his shirt without assistance! Daddy taught him that one.
He had his blood drawn for the first time and he did it like a champ! He cried a little, but he wasn’t resistant! He didn’t kick or scream or throw his body around.
He went to the dentist recently and it was manageable. A big improvement and I know he will do even better next time.
Today he sneezed and said, “bless you.”
He is no longer terrified of the elevator!
He allows daddy to cut his hair without any problems! No kicking, screaming, nothing like that. We will finally take him to get a haircut somewhere next time.
I asked him “Where are we going?” and he said “I’m going to therapy.”
We went to Disney World and he rode some rides. It wasn’t as bad as I expected it to be. He could not tolerate Magic Kingdom, but honestly, neither could I. Luckily my mom came too, so we were able to split the kids up at times. We were able to take Carter to Animal Kingdom and he loved it.
Getting Carter out of his comfort zone has been a great thing. Even if the experience is a major fail, it allows him to see what’s out there. It allows us as his family to open his eyes and his mind to new experiences and it allows other people to do the same and hopefully to be more open and accepting of kids like Carter.
So far, this has been such an amazing journey. To see Carter blossom right before our eyes has been such a huge blessing. I look forward to what lies ahead and will try to remain optimistic and patient as we meander down this path. I recently spoke with Carter’s doctor for his follow up and after hearing all the wonderful things Carter has been doing she said to me,
“You just might be getting your kid back.”
Cue the tears. Yes, I cried. My throat got tighter as I tried to hold it in, but I couldn’t. She told me I am amazing. She called me Wonder Woman. She said we are doing everything we should be doing and more. And I actually realized that she’s right. I am amazing. Even with all my flaws I am still amazing. I think mothers of special needs kids tend to feel lost and lonely. We feel like we aren’t doing enough or that we are not enough. Well, you are. I want my tribe (the Imperfect 10) to know that you are all amazing. We all are. Even at our worst. Even when we just don’t want to do it anymore and when we just break down and do and say terrible things. Even when we don’t want this responsibility anymore. When we check out and just hate everything. We are still amazing, even then. I am so thankful to have you all on this journey. Thank you for your acceptance, your guidance, knowledge, understanding, support, time, stories, openness, your love and your laughter. And since I’m thanking important people, thank you to my family and friends for your constant love and support. My partner in crime for everything, always. You’re really awesome. Thank you to strangers, people I barely know for your kind words. This sounds like the acknowledgements section of a book. Maybe one day I’ll actually put that in a book. I just feel so thankful and optimistic and grateful in this moment.
Speaking of books, one I could have written and always think about, Leo the Late Bloomer. I think about the parents in the book who just sit and wait and wait and wait and watch and watch and watch. Just hoping that their Leo will Bloom. Well, we’ve been doing the same thing. Waiting, watching, hoping that our Carter will start blooming. It’s so amazing to see him bloom right in front of our eyes. And I couldn’t be happier. I watched Carter kick a soccer ball with his daddy the other day. It was like magic, I kid you not. As usual, tears formed in my eyes. Something Q wanted for so long. Being able to play something with his son. Carter was engaged, participating, and enjoying it. He was laughing and having fun. And he was doing a great job. It’s things like that that really make you feel good. My boy is making a comeback. The Comeback Kid. Working hard and making tons of progress.
We have more things that we are working on and more things to improve, so hopefully the next few weeks and months will bring about even more positive changes!
Stay tuned as we continue to work on getting our kid back!
P.S. I didn’t spell check or grammar check this post because I am currently running on empty. Don’t judge me. I was also too excited to share all these successes!