Desperately looking for a feeding solution? The magic trick that will pull it all together? The thing is…there isn’t one solution. There are many, many solutions.

Stay with me here. There are many building blocks, like bricks in a house, but there is not “A” solution. I thought many times, maybe this will do the trick. This will be it. And just because something works one day does not mean it will work tomorrow, or even in an hour.

This part is SO frustrating. But what I finally realized (and it took a long time, believe me) is that they’re all important and necessary in this journey. Every brick, no matter how small, plays an important role in building Landon’s foundation for the rest of his life.

Let me tell you, when I finally had this epiphany it was like a light bulb exploded in my head. It’s a game changer because it helped me mentally survive and cope with all the setbacks by looking at the bigger picture. It may not make sense at the time (Autism rarely does) but it’s, oh so, important in the long run.

This realization finally helped me stop beating my head against the wall. Believe me, I wish I had realized it a lot sooner. I’m not saying it won’t still be frustrating when something works great one day and is out the window the next but at least it helps your sanity to know there really is a method to the madness.

Even though I finally learned this hard-fought lesson, I still have to regularly circle back and remind myself when it feels like we’re losing ground again.

In fact, I just had to revisit it this week when Landon stopped drinking his bottles entirely and a couple days later is suddenly not all that interested in the purees that he had finally become very interested in eating. I’m talking full on freak out mode. You know that feeling of desperation you get. Your imagination runs wild about what will happen when your child withers away. 

We are in a transitional phase and sometimes those phases are difficult and challenging and bring us to our knees, but they are necessary for growth. Bottom line…these challenges are necessary to move forward. We must take a big step back so we can truly prepare to launch forward.

P.S. Landon is back to eating purees and only occasionally gives me a hard time about it. Another crisis averted…

 

Okay, here it is. My son is 4.5 years old and still drinks from a bottle. In fact, the majority of his nutrition comes from a bottle. This is not going to be easy but now I’m going to double down. Not only does he still drink 5 bottles each day but I give him the bottle. As in, I hold the bottle and feed him like a baby. *cringes in shame* 

This is very hard to admit for just anyone in the world to see. There needs to be a “shame” font for this kind of thing. Seriously though, it feels like a Mom fail of epic proportions. It feels like a dirty little secret because you must be thinking “How on Earth has she not weaned him off the bottle by now??”

Well, do you want the top 10 reasons or all of them? Just kidding, I will stick to the main reasons. 

Reason #1

It became a deeply ingrained routine long ago. If you know anything about Autism you know how important routines are in their little worlds. Well, this goes a step further. It was crucial to maintain a routine to get him to drink his bottles when we were really going through major feeding struggles with him as a baby. The most important thing was to get the nutrition in him. I felt the threat of a feeding tube hovering around me at all times.

At some point, he couldn’t break from the routine of it. Drinking his bottle had to be the same way, same place on the couch (literally), same person (me), same words, same everything. I kept thinking he’s got to be done drinking the bottle before too long but here we still are. 

It’s too easy to second guess myself now. All the shoulda, coulda, woulda’s that fly around my brain. I have to remind myself the struggle was so real and I did whatever it took to keep him off a feeding tube and that’s a Mom win for me.

Don’t rewrite history in your brain while beating yourself up. In fact, just stop beating yourself up PERIOD. Can we make a pact? I’ll stop if you will.

Reason #2

Serious motor planning and fine motor delays. For a very long time, Landon didn’t have the capability of even finding his mouth with a bottle much less holding it there for a few minutes while he drank it. His motor planning only recent allows him to drink from a cup but that’s a whole other story.

He’s also worked really hard to get his hand strength up so he can even hold a bottle or cup. Why isn’t he holding his own bottle then if his hands are finally strong enough? See Reason #1.

Reason #3

It became a power play. I was surprised the first time one of his therapists told me it was a way of him gaining control. How could a toddler even think that way? The more I thought about it, I realized it was probably true. He probably felt out of control of a lot of things in his world. This was one thing he could control because I would jump through any hoop he threw my way to get him to drink his bottle. 

Part of my feelings of failure come from what a detriment it is to stay on a bottle for this long. It’s terrible for his teeth but that’s a luxury we can’t worry about yet. It also causes delays in speech. We don’t need any help with that. The guilt can eat you alive if you let it. 

Bottom line…what we do for our kids should never feel like a shameful, dirty little secret. You do what you gotta do and don’t worry about what you’re “supposed” to be doing on someone else’s timeline or what anyone else thinks.

As parents we may not always have the answer but we always have our child’s best interests at heart and that is all that matters. 

Early Intervention. I didn’t have a clue what those words meant the first time I heard them or just how crucial “Early Intervention” would be for our son and our family. The earlier you get help the better. Even if you aren’t sure your child needs it…do it. Worst case scenario, your child gets an early boost in life. Best case scenario, the team will greatly help to build a solid developmental foundation for your child.

We started shortly after Landon turned 1. He failed his developmental screening at the Pediatrician. And I’m talking, failed it across the board.  Globally delayed, the Dr said. It was terrifying!

When we were first referred to a Feeding Therapist, I foolishly thought we would go see her a couple of times, she would get us on track, and we’d be on our way. Boy oh boy, I couldn’t have been more wrong, but it turns out that was a blessing in disguise. I’m glad I didn’t know how long the road would be back then. I was already plenty overwhelmed. We didn’t need to know we would take many step backs before we moved forward. Or, that we would still be deep in the struggle years later.

So, Landon was evaluated for Early Intervention and it was determined he would need PT, OT, Feeding and eventually Speech Therapy. Seemed like a lot for a little baby and he did not love it, at first.  

The first person we met was AJ, who turned out to be a lifesaver. She was his Physical Therapist and team lead. She came in, took control, and helped to right our ship, so to speak. I’m sure she could see I was floundering. From there, we continued to build our team. Most of his therapists have been great but we had to weed some out. They have to be a good fit for you and your child.

You will lean heavily on your team, especially in the early days. Some days I don’t know who they helped more, Landon or me. They are a wealth of knowledge and you will need it all before you get your degree in Autism. HA…as if that’s possible when the curriculum is constantly changing.

They are also your emotional support as a Mom.  They understand the daily struggle and the toll it takes on a family. We have had many “therapy” sessions for me as they are working with Landon.

We live in AZ and it has an incredible Early Intervention program.  Right now, check out your state’s program and apply TODAY. The process takes time so don’t delay. If your child qualifies after an evaluation, you will get tons of help at no cost to you. Yes, I said no cost…none. So, don’t let financial worries keep you from getting help for your child.

Build a team you love and they will quickly grow to love your son just as much. They become like family so choose wisely. You won’t find them without a lot of work but it’s worth it. They are some of the most kind and caring people you will ever meet. If they are anything less, keep searching. You need to feel 100% comfortable with the people coming into your home and spending time with your child.

Bottom line…IT TAKES A VILLAGE. You don’t have to do this alone. In fact, you can’t do it alone. Get the help that is available and take some of that load off your shoulders. You will be amazed at the progress your child makes and you will be a better Mom for it.

It’s not just picky eating! So much of the info I find in my search for help with my Autistic son’s severe sensory feeding issues are all about picky eating. You know the ones, “My son will only eat chicken nuggets and french fries.” No, that is not what I’m talking about.

What I’m talking about is my son, Landon, who can’t chew food and is afraid of putting anything but yogurt or puree in his mouth. He doesn’t know how to use his tongue to maneuver food, he does not know how to chew it, and he certainly wouldn’t know what to do with the food even if he got it chewed. THAT is what I’m talking about.

I WISH we could get to the point where he will only eat chicken nuggets and french fries because at least then he is physically capable of eating. Really eat, as in solid foods, but for now he survives primarily on Pediasure. Vanilla because he wouldn’t want to get too crazy with his flavor. Anyway, I will climb the “picky eating” Mt. Everest later but for now I’m still working on climbing this one.

When I step back and look at the big picture of what we need to achieve to get him eating, I feel like I’m drowning. The longer I look, the worse I feel. It becomes insurmountable, at least in my mind. Not just one MT Everest, but one Mt Everest after another. And, for the record, I’ve always thought people who climb Mt Everest are completely insane. Yet here I am, day after day, attempting to climb my very own Mt. Everest, but what else am I going to do?? Not climb it? Not an option.

I’ve realized the only way to survive this is by taking it day by day (or even minute by minute). And I’m talking teeny, tiny baby steps. It’s more like, “One tiny step for mankind, one giant leap for Landon.” What is the most minuscule non-event to most families is extraordinary in our house.

Let me give you an idea of what I’m talking about. Landon touched a cracker…to his lips…on his own. Cue the fireworks…for real. THAT is what I will be talking about here.

I want you to know that if this is what you’re going through in your life, with your child…you are not alone.  I am right here with you.  I see you and I get it!

I hope you’ll join me on this journey as I try everything imaginable to get my son to eat and hopefully it will help you along the way, too.

As we go, I want to hear about your “little” victories because every one of them deserves to be celebrated.