Kathryn from Singing through the Rain is my next guest poster 🙂
When my son was born things were a little hazy. I had been in labor for 24 hours and things had been rough with a fourth degree tear. When I tried to breastfeed him, he was not latching on right. I was a new mother so I wasn’t sure how easy these things were supposed to be, but then things got more strange.
They told me my son was refusing to eat. He was happy and born healthy from what we could tell, but he did not want to eat. He was not hungry. How strange for a tiny new baby! Through many of hours of work and some amazing nurses they worked with my son to start eating. First with a tiny dropper, then with preemie bottles.
We kept trying to breastfeed and even had a consultant come and help me, but still we were having problems. I would cry in pain and I just knew something wasn’t right. When we got discharged from the hospital, his paperwork said “failure to get hungry.” He was eating more at this point, but still drinking from the preemie bottles. We used those preemie bottles for about a week or two, and worked on getting him to learn how to eat and suck on a bottle.
When we finally were able to switch him to regular bottles, he had a hard time with them. His tongue seemed to get in the way and he didn’t seem to know know how to suck on them. When we went for one of his first check-ups I talked about it with his pediatrician. I had done some research trying to figure out what was going on, and asked the doctor if he could be tongue-tied. The doctor told me with all certainty that there was nothing wrong and I felt silly for even asking. But in the back of my head I knew there was something wrong. I had babysit kids all my life and I had never had this much trouble feeding a baby!
Over the next few months things got better and my son Adam seemed to adjust to the bottles and how to feed. We switched to a new pediatrician who was wonderful. He was so helpful when my son was sick a lot and when he started to have multiple ear infections. When he finally told us it was time to start baby food, I was excited. I couldn’t wait to see Adam’s reaction to food!
Things were good for awhile, I started with green beans and worked on vegetables like he told me to, leaving fruits for last. When we finally started working on fruits, Adam refused them. I thought it was strange, but the doctor said it was ok as long as he was eating the vegetables.
Around 9 months when we switched to the next stage of baby food that had the chunks in it, something new happened. Adam started choking and gagging whenever I fed him. It was like he couldn’t handle the chunks in the baby food. I immediately went back to the stage 1 foods since that seemed easier for him to swallow. I figured he just wasn’t ready yet.
During this time, Adam started to have weight gain issues. Every visit to the pediatrician seemed to put him lower on the percentile chart. He even got as low as 3% for his weight! As a mom I was worried, but the doctor was monitoring it and told me that he was still gaining a little and was healthy. Around 12 months, Adam still was not eating any other foods except baby food and baby puffs. I had been keeping the doctor updated, and he finally agreed at this point that something was wrong.
That was when we referred to a feeding therapist. That was where it all started.
Once referred to a feeding therapist, we found out that Adam had very low muscle tone in his mouth, cheeks, and face. That was why he had never been able to latch on to breastfeed and why he had not been able to suck on bottle well. It was also why he was not able to chew food well and why he sometimes gagged and choked. It was so wonderful to finally get the answers to things we had always wondered about.
We also found out that he had sensory issues which was why he did not want to eat most foods. He could not tolerate most food textures and even other non-food textures. From there we were referred to an occupational therapist and they were able to start helping him with the a lot of the sensory and texture issues.
At his 18 month old well check-up we filled out the usual paperwork to see where Adam should be for his age. The doctor told me that he was concerned about his speech and also a few other things he was not doing yet. He said he wanted him to be tested for Autism. My heart sank. I could not believe this was happening. My husband was deployed and I was doing this all alone. I didn’t want to do it alone.
That day we were also referred to a speech therapist and we got Adam started on that as soon as we could. We were now in therapy 3 times a week: feeding, occupational and speech. Several months later I drove with a friend to Adam’s appointment with a specialist to get him tested for Autism.
I had filled out the paperwork beforehand, and was ready to hand it in. When we saw the doctor that day, he talked with Adam and played him, but he didn’t do any testing. He said that because he had “good eye contact” there was nothing wrong with him. I pointed out all his other issues with feeding and sensory, and he said that it was probably SPD (Sensory Processing Disorder), but he never gave us an official diagnosis.
I was so relieved that Adam wasn’t Autistic, but at the same time, I felt something was still wrong. I knew there had to be more going on. Over the next few months, things got worse. Adam had a lot of procedures done, and we saw so many specialists to try to figure out what was wrong.
My husband came home from deployment and we finally took my son to get re-tested by another specialist -a Psychologist this time. She was wonderful and after 3 interviews, several hours of testing and a book full of paperwork on the life story of my son, we had a diagnosis. The waiting was over, we were finally going to have answers.
In my heart I knew what it was. I had done the research and I just knew. And I was right. He was diagnosed with Autism and SPD (high functioning). In a way, we were so happy to get those answers, but in another way it was heart-breaking. It’s hard to have to watch your baby struggle his whole life and not be able to help him like you want to.
I tell you all this story to tell you this: there is nothing stronger than a mother’s intuition. I knew something wasn’t right, even when people told me I was wrong, or that I was crazy, or that I didn’t know what I was talking about. I just knew. I pushed and pushed until I got answers. Until my son was getting the help I knew he needed.
If you are worried about your child today and feel like something is just not right, don’t give up! Push, until you get answers and research as much as you can. Don’t ignore that intuition if you think something is wrong. Get help today. It can change your child’s life!
My son is now almost 3 years old and is in therapy up to 9 times a week. They tell me he has a good chance if we get him help now and I see so many improvements already. There is still a long road ahead, but I am so glad I listened to my intuition and got help for my son.
Last Updated on May 30, 2016 by Julie Provost