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F.

Male | 4 years & 6 months

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F.

Male | 4 years & 6 months

F.'s Journey, as told by KE

When and why did KE start to feel concerned about F.'s health and development?

My son started talking and walking at 10 months old. For all we could tell - and for all the doctors could tell - he was typical. You could ask him, “What does a cat say?” and he would answer. He would play peekaboo. He was engaged, and he had probably 30 words by the time he was 18 months old. I noticed at around that 15-month mark that he was not saying “Mama.” My husband said, “He's saying it. Do you hear him? He says, ‘Mom.’” I said, “I don’t think so.” That was the first thing that I questioned. He would say words, and then he would stop using them. Then, on top of that, he wouldn't eat very much variety. The doctors told me, “Oh, he's fine. Lots of kids are like that. As long as he's eating yogurt and those fruit pouches, he's fine. Don't worry about it.” So I didn't give it much thought. Then, at around 18 months, some of his words started changing. He went from saying “bite” to saying “bing,” and then he lost that word completely. I was pregnant with my second child at the time. F. was going to be 22 months old when I had my second one. At around the 20-month mark, he quit eating even more, dropped even more safe foods and then dropped even more words. By the time he was 22 months, right around the birth of my second child, he lost basically all of his words, and his level of social engagement dropped to very little. A friend of mine was getting married, so we traveled out of state from Georgia to Oklahoma to go to her wedding. That's when it was the worst. We realized just how far into himself he had gone. My family was there with us, and we all thought, “He's just not engaging at all.” He went through a regression, basically. In December, at the age of two, he wasn’t responding to us and there were no words at all.

Does KE have any other advice or experiences KE would like to share?

If you talk to a therapist and if you watch your kid interact with them, you can tell if your kid is connecting with them. We had another occupational therapist come into the home, and she was trying to physically hold him down, and it just felt barbaric to me. It wasn't going to mesh with him. His personality is strong, and he wants to do the things that he wants to do. He doesn't like strangers that he doesn't know touching him. And the therapist wanted to do all those things in the home, where he was bored. He didn't want to do any of that. I said, “No.” That's when I found his other occupational therapist in a clinic. It had to be in a clinic setting. He did so much better. The advice that I would have for somebody is: don't just think that speech therapy is going to fix speech. There are other things that could be involved. And I believe in the power of occupational therapy because they do literally everything. In a clinic setting, they can provide tools for play like a gym, a trampoline, and swings. There are all these things they can use to engage kids. Language isn't going to connect with kids like F. because they don't know what you're saying. He has a pretty severe receptive delay on top of the expressive delay. Also, children like F. need to get outside. Get them walking on trails, and exploring on their own. Give them a little bit of autonomy. Whatever you're trying to do - if you're trying to make him say certain words, you have to loop in his interests. For F., I know that if he's not interested, he's not going to do anything you're asking him to do. I can ask him to draw, or to trace something. If I asked him to trace a tree, he would say, “I don’t want to trace a tree.” If I put a pirate ship in front of him, though, he'll trace the pirate ship. You have to do things that are in tune with your own kid. You can't present an activity just because somebody else said it worked and expect the same thing to work for your own kid. Every child is so different. F. likes running in the sprinkler. He likes running in general. He likes hiking through the trails, and just walking through the woods. He likes sliding, and swinging, and jumping on the trampoline - literally just anything he can use to be active.

What was KE's experience seeking a diagnosis and treatment for F.?

We called to try to get a referral through Babies Can't Wait, which is the Early Intervention program here in Georgia. They said, “Yeah. We'll get this process started. But it's going to be a month until somebody comes to talk to you.” We called in December, and then he didn't see his first therapist until March. They wouldn't assign him a speech therapist, and they didn't assign any other therapists. They sent out what they call “a special instructor,” which is basically like a preschool teacher. I love her. She’s great. And she did get him to say some words. But she wasn't a speech therapist. He also had sensory issues: he would spin around. And they didn't provide for that. They didn’t say, “Oh, he needs occupational therapy.” And he didn't eat very much. Now, looking back, if I have a developmental question - if I have another child or I have these experiences with my second child - I’d never rely on the pediatrician. I don't feel like they have a good enough understanding. If any parent comes to a pediatrician and says, “I'm concerned about the way my child is eating. I'm concerned about his speech or something developmental,” they should be referring to specialists, like the people at Babies Can't Wait. Then, you talk to somebody on the phone who knows what they're doing. I don't feel like my pediatrician caught my son. I don't think that their screening questions were enough. Then, when I went to Babies Can't Wait, they still didn't give me an occupational therapist. We later found that occupational therapy was the key to his language. After Babies Can't Wait did the evaluation, they called to tell me they would be providing the special instructor once a week. That night, my mom posted on her neighborhood Facebook group and said, “Does anybody know any private speech therapists that they can recommend?” I called one of the speech therapists, and I said, “Please, please can you fit us into your schedule?” She said yes, and she was just wonderful. We paid for private speech therapy once a week and we had the special instructor from Babies Can’t Wait once a week. We’ve been in speech therapy ever since then, when he was almost two-and-a-half. The speech therapist that we were paying for said, “I really think that occupational therapy would help. I think a sensory-related issue is causing him to struggle to pay attention to language.” It was only a couple months later that I contacted a private occupational therapist, because Babies Can't Wait still wouldn’t give us one. I had to fight with Babies Can’t Wait to get the speech therapist that we had covered in their services. (It took maybe three months but we did get our speech therapist covered.) I found an occupational therapist when he was just over two-and-a-half. He didn't start pointing and labeling until we started OT. When we started with her, that was the key. We've been with her since then. He's four and a half now - this July, it will be two years since we started. We love her. Even through teletherapy, he's so responsive to her. As far as a diagnosis, I've gotten mixed opinions from different therapists. The two that I trust the most are his original speech therapist and his OT. They feel like he has a sensory processing disorder and then some sort of language disorder, possibly social communication. They don't feel it’s autism for a variety of reasons. We switched to a different speech therapist a year ago because I found a speech therapist that would do feeding therapy. I don't know if she's the best fit for him. She feels that he's autistic, and she has a rigid view of what his abilities are. I've been thinking about switching from her for a long time. She was the first feeding therapist we could get in to see, and I have been cautious to change because it's just a very intimate therapy. You have to build a rapport for it. She's the only one that has suggested that he has autism. We haven't gotten an official medical diagnosis because we're afraid of people making assumptions about him that put him in a box. When I'm talking to other people about him, I usually do just say he's autistic. He is different, and most people know that word (“autistic”) and they kind of understand its qualities. But I feel he has more of a social communication disorder or a language disorder mixed with other things, such as ADD or something else. Compared to kids with autism, his play is normal. He likes other kids and wants to play with other kids. He is social and wants to be social. The barrier is that he doesn't know how to communicate with them. You can see it. He'll try and then he'll kind of give up. But he lights up when other kids come into the room. It's just that he only has single words, and he's not conversational yet. And his receptive language is just now coming. He's going through a leap, where you can ask him a question like, “Which one of these is blue?” and he can answer it. Even if he has known that information forever - he's very smart - it's all locked in his head. He just can't get it out. This kid can play Mario Brothers better than my 10 year old nephew. He has been evaluated by the school. Once he was in Babies Can't Wait, at the age of three, they are required by law to evaluate him for a transition into a special needs preschool. He has been in that preschool since he was three. The first semester was three hours a day every day until May. Then, for the past two semesters – until coronavirus, of course – he was in there for six hours a day every day. He received two speech therapy sessions and one OT session every week on top of his private therapy. We've held off on the medical diagnosis because I've been cautious. People already put him in a box without a diagnosis. His teachers do this, even without the medical diagnosis, because they do have an educational one. My husband and I decided that if there was ever a time that we couldn't provide the therapy he needs to progress, or even the therapy we think he needs more of, then we would follow through with a diagnosis. I'm sure we could walk out of an evaluation with a diagnosis and get, you know, ABA therapy or whatever. But right now, we are comfortable with the speech therapy, the feeding therapy, the developmental preschool, and the occupational therapy. We feel, and his therapists feel, that he's making good progress. He's doing what he should be doing.

F.'s Medical Notes

Signs & Symptoms

Diagnosed Conditions

Treatments & Therapies

Additional Comments

On Speech therapy

Started as private, then covered by E.I.

On Occupational therapy

Strongly recommended.
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