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My Little Boy is in Therapy

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When Adam was born he had a hard time eating. We tried breastfeeding, but he wouldn’t latch on even with the help of the nurses and the lactation consultant. In those first 24 hours he wouldn’t eat at all. The nurses worked with him and finally got him to eat starting with a little dropper, and then using preemie bottles. When we left the hospital they put on his discharge papers: “Failure to get hungry.” In those months that passed after he was born, it took a LOT of work getting Adam to take his bottle. He struggled with it for several months and then he got used to it and things were better on the eating front.

Adam with rice cereal all over his face

Around 4 months we started feeding him rice cereal. He seemed to love  it! Then around 6 months, we started on the stage 2 baby food jars. He did great and he loved all his veggies! When it became time to start on fruits (the doctor had us wait until he had tried all the veggies first), he would not eat them. He gagged and shuttered. We tried mashed fruits, jarred fruits, fruits mixed with rice cereal and oatmeal, and we tried every flavor out there! Soon after, he started refusing his rice cereal and oatmeal too. I figured he just really liked his vegetables, I wasn’t going to force him to eat, so he started eating the stage two jarred veggies for breakfast, lunch, and dinner.

Adam also loved crackers. He would eat crackers, cheerios, baby puffs, and chips. If it was crunchy and cracker-like he most likely would like it. We tried other foods, but he just wasn’t interested. I figured it would just come. I watched all the other moms feeding their kids all kinds of foods, and I was sad that Adam wasn’t interested. It got to be frustrating feeding him the same foods every day, but I continued hoping everything would eventually change.

Adam did NOT like crackers at first!

Around 9 months we started trying the stage 3 jarred baby foods. He liked the the smooth parts, but the chunks of food he would spit out, gag, or choke on. Also around this time, I started getting worried about his weight. He had always been on the lower end of the scale, but nothing too bad. Around 6 months and up we started noticing he was not gaining enough weight. His pediatrician wasn’t concerned at first, he said it would eventually start going back up, but it never did. Adam does gain weight, but it is very slow. He has been under the 10th percentile for weight since the beginning of this year.

We continued to keep trying foods, and Adam opened up to a few new choices. He would eat watermelon, granola bars, yogurt, and chicken nuggets at times and other times not so much. We were still feeding him stage 2 baby food every day for breakfast, lunch, and dinner. It hurt me so much, because it seemed impossible that baby food could be filling him up enough at this age. People kept telling me it was normal, he was just a picky eater, but it was more than that. I knew it in my heart.

Adam loving his peas!

At 12 months I kept expecting everything to change. Now he will eat more, I thought. But it was about the same. At his 12 month appointment I discussed it with his pediatrician, and said he wanted Adam to get checked for a food/texture aversion. The doctor said he was a healthy boy, but this was something we needed to get checked out. He explained what it was and I did some research on it and things started falling into place. I realized a lot of the behaviors I had been seeing were definitely symptoms of this aversion. The choking and gagging, only eating foods that had certain textures, and him being very texture oriented, (he was afraid of grass and sand, and had to feel certain textures on his lips like food, and clothing).

One day we were out for lunch, and I was trying to feed Adam his stage 2 baby food. A lady and her two children sat by us and watched me. She asked me how old he was and I told her 13 months. I could tell she was looking at me weird. Several minutes later, she asked me again how old he was. I told her the same, and we chatted for a minute or two. I finished up feeding Adam and watched as her kids ate a kid’s meal. Before we left, she asked me a third time how old my son was. I knew by this time she thought I was crazy. I knew Adam was not supposed to be eating baby food. She knew it too. But what was I supposed to do when he would eat nothing else?

We had his evaluation several weeks ago and I got the results back today. He has a feeding disorder that is caused by decreased sensory and motor skills. They also tested him in his sensory processing skills and found that he is in need of occupational therapy as well. They told me that because of these issues, it is probable that Adam will also need speech therapy. He is 15 months and does not say any words at all right now.

A recent picture of Adam during mealtime.

During is evaluation, they found he has decreased muscle tone in his cheeks and face which makes it a little harder for him then most to eat. He scored very low on tactile, taste and smell, movement, and visual and auditory sensitivity. Because of some of these problems, he doesn’t have very good balance. In his evaluation they said, “…he was observed to overstuff his mouth with crackers and to frequently use his fingers to hold food in place while chewing. He exhibited an immature up/down munch chewing pattern with soft solids tolerated. These behaviors are suggestive of a sensory deficit; as well as abnormal oral motor skills characterized by decreased strength. Results of today’s assessment revealed Adam exhibits a significant oral motor/feeding disorder characterized by decreased oral intake of solids, disorganized feeding skills, impaired oral motor skills, decreased self-feeding/drinking skills and oral defensiveness.

I do not love my baby any less, in fact this just makes me want to love on him more because I know he needs it. He may have a hard time eating and doing other things, but he is still the happy baby I know. Right now our therapy sessions are once a week for the next 6 months. We are waiting on a referral for the occupational therapy and they are going to watch to see if he starts improving in speech and starts talking at all. If not, then we will start speech therapy as well.

If I could be honest and say I am so relieved to finally have everything figured out and be getting some help. To know why he was the way he was as a baby, why he didn’t want to eat, why he couldn’t latch on to breastfeed, it’s just a relief to have some answers. I am so thankful we have good insurance that can pay for all of this. I know there is no way we could do it otherwise.

I am a little overwhelmed at all this coming at me right before my husband deploys. I know that this is going to take a lot of work and especially a lot of work at home working on the things he has learned in therapy. I know it will be worth it and I am so glad we were able to catch this now then a year or two from now. I know that when his daddy gets back, this little boy is going to be so different and so grown up!

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  1. girl, i am so, so sorry. but i am so proud of you for getting him what he needs. all i can say is, i completely understand…and if you need me, i am here. though its not exactly like Stephen's case, all feeding disorders/aversions are very similar and we moms are in it together…like I said, if you need me, i am here. praying, praying for you both!!! +

  2. Hopefully things will progress well and be easier for you than you're anticipating. Kind of bad timing with your hubby deploying, but maybe this will give you something to focus on while he's gone, and maybe watching him improve will take your mind off your hubby being gone? Good luck with everything!

  3. This can be a hard time and difficult to process. My son had many of the same problems (not wanting to eat, overstuffing the mouth, not saying any words, lack of muscle tone in the cheeks/tongue). Around age 2 he was diagnosed with Apraxia which is a motor planning disorder that impacts motor planning, speech and even eating. My son has had Speech Therapy, O.T. and is also doing feeding therapy. It can be frustrating and depressing at times but he has had so much progress I'm so thankful for the help we received. It doesn't make me love my son any less but I realize I have one special boy on my hands. I can understand what you're going through so remember, you're not alone.

  4. Oh Kathryn, I am so sorry you weren't able to hear better news today, but again I know that feeling of relief to finally have the problem identified so that the solution can be reached. It will be trying at times, especially with Jon leaving, but God only gives us what he knows we are capable of handling. In time things will work out well. Therapy is a wonderful tool and in time the rewards will be great! Prayers and encouragement 🙂

  5. I am so glad you got it all figured out. Now you can move on and help him the way he needs. A mother's intuition is usually right… and you sure where. Adam is adorable and I am sure he will do great with the therapy!

  6. My goodness, Kathryn, no WONDER you've been on my mind and heart so much lately!! Tim's diagnosis was a bit different, but he had speech and motor skill delays. With a lot of work, he made so much progress! I know it's both a relief to know what's going on, and sometimes feel like a lot with the challenge of it all. Please know you are all in my prayers! Hugs 🙂

  7. I am so glad that everything was figured out and now both you and Adam can get the help he needs. I will be praying for you all during this time. Please keep us updated!

  8. What a strong mama! Adam will do great! In a few years, you won't even know he had to go through all of this. Keep your head up mama, you're doing great and Adam is a very healthy little man 🙂

  9. I am SO glad you finally got some answers! The news can be bittersweet, though, can’t it? One of my Xanga friends just found out what disability her son has, and she was blogging about how bittersweet it was to finally have a diagnosis.

    I’m glad that you talked to his doctor about it now instead of letting it go for even longer. One of the twins my sister and I watch had to have occ. therapy for a year and a half or so every week. It was AMAZING the difference in her by the end. She had finally caught up to her twin!

    Oh, and one of the little girls I baby-sit is 3 and STILL eats the completely pureed baby food. :/ But she doesn’t have anything like Adam. Hers is just plain pickiness. *sigh*

    1. Thanks, it is very bittersweet. Wow that is awesome it sounds like occ. therapy will make a huge difference! That is crazy about the 3 year-old little girl eating baby food. It does sound like that’s what she has. I’m surprised the doctors have let it go that long… Thanks for commenting! 🙂

      1. I should clarify. She eats all normal food, except for her veggies. The only veggies she will eat is the pureed kind. She is one stubborn little girl. Lol.

        1. Ah ok that makes sense. Well that’s good that she eats most stuff! Can you imagine eating pureed veggies for the rest of your life? I would miss salads! 🙂

  10. I found your blog through Media Mom Creative. 🙂 She did a great job. My son is in Physical, Occupational and Speech Therapy. He is 17 months and has Cerebral Palsy. So he still doesn’t eat well or talk. He also can’t crawl or walk, but if you ever want to chat about therapies I am here. 🙂

    1. Hi Sarah!
      Thanks so much for coming over and commenting. I actually follow you on Twitter! 🙂 Wow I am so sorry about your son. How long as he been in therapy for? We just started feeding therapy a couple of weeks ago and in two weeks will be going for our occupational therapy evaluation. Hard t believe we are doing this, but the feeding therapy seems to be helping slowly bit by bit already. How has everything helped your son? I am interested to know how long it takes to see a difference. Thanks again!

      1. Sorry this has taken so long. It got lost in my email. He has been in Therapy since about March. The therapists have seen a huge improvement. It is hard for us moms to see it since we see them everyday. It is slow but has been a HUGE help. Good luck. I am always open to chat. 🙂

        1. It’s ok! Yeah I have been discouraged about Adam not making any progress, he just has really bad stranger anxiety so we are having trouble with him getting used to the therapist. I am glad for what you said though, because you are right we do see them every day so it’s hard for us to see any improvement. Thanks! 🙂

  11. *hugs* and prayers to you. When my oldest was 2 I just knew something wasn’t right so I took him in. He has been in speech therapy for about 4 years now. He was in OT but doesn’t need it anymore. It has all helped him so much. It was so great that you were able to find out what is going on.

    1. Thank you so much Julie. Did they ever figure out what was wrong with your son? I am so glad that it has helped a lot. Being on the beginning side of things you wonder how everything is going to work out. Thanks for commenting! 🙂

  12. Hi Kathryn,

    I’ve gone down a similar road that you are heading down. My son receives speech and occupational therapy and he’s very picky about food. I, too, had to deal with my son’s delays while my husband was deployed. I’m glad you were able to get some answers. The therapy will be a great help. I definitely will keep you and Adam in my prayers.

    1. Hi Tonya,
      I am glad I am not alone. How is your son now? Is he doing better? Eating better? Thanks for the prayers, I appreciate it!

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  16. Hi, I hope therapy is continuing to go well for both your little boy and you! I am an occupational therapist and a mother. My little girl just turned a year, she has had very low weight since about 2 months. She just never seemed to be interested in her bottle (breast feeding or formula) or food. she has dropped all the way down to the 3rd percentile… It’s definitely hard to explain to someone that she is more than picky that she just is not eating like a “normal” child her age. I so feel for what your going through! Even as a therapist that helps other families with the issues it can be hard to see the light at the end of the tunnel some times. Good luck with everything you are definitelynt alone!!!

    1. Hi Tami,
      Thank you! And yes, if you read my most recent posts, we are getting more help now that we have found out my son has Autism and SPD. I am sorry about your daughter that sounds very very familiar, and it sometimes seems like he does not have that part of the brain that tells him he should be hungry. It’s very hard to explain to people, and sometimes comments make me feel bad, but I have learned to let them roll off my shoulders. Unless you are going through it, you are not going to understand. I hope that you are able to find help for your daughter. Good luck and thanks for commenting!

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