Tyler had his ECEP evaluation yesterday. To say that it was emotionally draining, would be an understatement. We had been anxious about the appointment since we found out about it a month ago. I spent the last few days filling out paperwork and jotting down notes about things and questions to ask them. Tyler is very social so I was positive that they weren't going to diagnose him with autism. Until a few days before the eval. Then the panic started to set in. What if they do? What if I have TWO children on the spectrum? How will I handle it? How will I handle hearing it? So then I decided I would tell myself that they were for sure going to diagnose him with autism, so that there were no surprises.
The ECEP team was beyond great. They adored Tyler and he had so much fun with them. We were there for over three hours doing different evaluations and answering a million questions. Tyler was evaluated by a developmental pediatrician, a psychologist, a speech pathologist, a physical therapist, and an occupational therapist. After we were done with all of that, we went home for an hour so they could discuss everything and talk with his therapists here that he works with on a weekly basis. Erick and I went back without Tyler to find out what they had decided.
First things first, he does not fit the criteria for an autism diagnosis at this time. He is autistic-like, but also makes good eye contact and loves to play and interact, so they are confused. Not having autism is a good thing, but it also complicates things. Tyler is regressing and losing skills. That is a typical autistic trait. So to be regressing and NOT have an autism diagnosis is even more concerning because they have no idea what is causing him to regress. If he loses any more skills or has anymore regression then they will refer him to a neurologist for an MRI and EEG.
From a medical stand-point, they want him to see an ENT and make sure that his tubes are still in place. They can see them, but aren't sure if they're still in the ear drum. They also want the ENT to perform a hearing test, just to make sure that's not an issue. They are also looking more into the medication that I had to take during my pregnancy for my thyroid to see if it is known to cause any problems. They also want to get his thyroid checked because the medicine I took (PTU) can cause the fetus' thyroid to not fully develop. He is also being referred to a geneticist. We were expecting that, but it was still hard to hear. He has wide-set eyes, epicanthal folds, and they don't think he looks like either of us. Plus his behavior and lack of speech could be a sign of a genetic defect or syndrome. They also want to send him there because of our family history (all the diabetes, autism, seizures, etc.)
As far as everything else goes, he has a severe language delay. He is at the level of a 7-month old. Not only does he not talk (we do get an occasional word,) but he doesn't make enough sounds or do enough (or any) babbling. He also has Sensory Processing Disorder, hence all the biting, spinning, tip toe walking, hand flapping, head banging, and all the other stims he does. And all of the eating issues.
They gave as an overwhelming amount of information and I honestly can't remember all of it. His therapists will have all of the recommendations and we will also get a formal report in about a month, so we can review everything then. I thought that I would handle everything well as long as they didn't diagnose him with autism, but the whole experience was really hard on me. They asked SO many questions and many of them are not things I normally think about. Like when they asked me "What does he call you?" I thought, what do you mean what does he call me? He doesn't call me anything. Not ma, or mama, or mommy, or even some other name he made up. He's never called me anything. The reality of that hit me hard. I long to be his "mama." They also wanted to know if he ever "social smiled." He doesn't. And never has. (FYI-a social smile is a smile in response to JUST a smile. Not in resposne to play or funny things or cute baby talk.) This is human instinct and my son doesn't do it. He also doesn't wave bye-bye (never has,) clap his hands (used to,) point to body parts (used to,) imitate sounds or words, make animal noises, and so on. He has a lot of really great strengths, but having all of his weaknesses painted out for us in black and white was difficult.
So our next step is to get our appointment with the geneticist set up. It will probably be a three month wait, which is fine because were are going to be very busy for most of June with Cierra's medical stuff and Tyler's hand and a million other things we need to do while we're in Utah.
We sure love our Tyler and wouldn't trade him for the world. We are hoping and praying that he will start to make some progress soon and not have anymore regressions.
The ECEP team was beyond great. They adored Tyler and he had so much fun with them. We were there for over three hours doing different evaluations and answering a million questions. Tyler was evaluated by a developmental pediatrician, a psychologist, a speech pathologist, a physical therapist, and an occupational therapist. After we were done with all of that, we went home for an hour so they could discuss everything and talk with his therapists here that he works with on a weekly basis. Erick and I went back without Tyler to find out what they had decided.
First things first, he does not fit the criteria for an autism diagnosis at this time. He is autistic-like, but also makes good eye contact and loves to play and interact, so they are confused. Not having autism is a good thing, but it also complicates things. Tyler is regressing and losing skills. That is a typical autistic trait. So to be regressing and NOT have an autism diagnosis is even more concerning because they have no idea what is causing him to regress. If he loses any more skills or has anymore regression then they will refer him to a neurologist for an MRI and EEG.
From a medical stand-point, they want him to see an ENT and make sure that his tubes are still in place. They can see them, but aren't sure if they're still in the ear drum. They also want the ENT to perform a hearing test, just to make sure that's not an issue. They are also looking more into the medication that I had to take during my pregnancy for my thyroid to see if it is known to cause any problems. They also want to get his thyroid checked because the medicine I took (PTU) can cause the fetus' thyroid to not fully develop. He is also being referred to a geneticist. We were expecting that, but it was still hard to hear. He has wide-set eyes, epicanthal folds, and they don't think he looks like either of us. Plus his behavior and lack of speech could be a sign of a genetic defect or syndrome. They also want to send him there because of our family history (all the diabetes, autism, seizures, etc.)
As far as everything else goes, he has a severe language delay. He is at the level of a 7-month old. Not only does he not talk (we do get an occasional word,) but he doesn't make enough sounds or do enough (or any) babbling. He also has Sensory Processing Disorder, hence all the biting, spinning, tip toe walking, hand flapping, head banging, and all the other stims he does. And all of the eating issues.
They gave as an overwhelming amount of information and I honestly can't remember all of it. His therapists will have all of the recommendations and we will also get a formal report in about a month, so we can review everything then. I thought that I would handle everything well as long as they didn't diagnose him with autism, but the whole experience was really hard on me. They asked SO many questions and many of them are not things I normally think about. Like when they asked me "What does he call you?" I thought, what do you mean what does he call me? He doesn't call me anything. Not ma, or mama, or mommy, or even some other name he made up. He's never called me anything. The reality of that hit me hard. I long to be his "mama." They also wanted to know if he ever "social smiled." He doesn't. And never has. (FYI-a social smile is a smile in response to JUST a smile. Not in resposne to play or funny things or cute baby talk.) This is human instinct and my son doesn't do it. He also doesn't wave bye-bye (never has,) clap his hands (used to,) point to body parts (used to,) imitate sounds or words, make animal noises, and so on. He has a lot of really great strengths, but having all of his weaknesses painted out for us in black and white was difficult.
So our next step is to get our appointment with the geneticist set up. It will probably be a three month wait, which is fine because were are going to be very busy for most of June with Cierra's medical stuff and Tyler's hand and a million other things we need to do while we're in Utah.
We sure love our Tyler and wouldn't trade him for the world. We are hoping and praying that he will start to make some progress soon and not have anymore regressions.
5 comments:
Keeping Tyler and all of you in my prayers. I would feel a bit overwhelmed too Kristin!! But you are doing all the right things with Tyler and the other kids too. Hugs and love to you and Erick! The kids couldn't ask for better parents than you two! Love you lots!
Wow that would be hard for me to take all in too! You are doing a great job and deserve more credit than you give yourself!
Keep us posted on how things are going.
Wow, that must have been quite the day; sitting through all of that analysis. I'll be happy to see him and get him down on the floor for a good wrestle.
I'll be happy to see you ALL.
As always, I am amazed with how much you go through with your kids. You must be stronger than you realize. I will keep praying for you!
Sorry to those of you who had left comments that aren't here anymore. Blogspot when crazy for a couple of days and this whole post disappeared and when it showed up again, the comments were gone.
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