I went to a playgroup this last week with Nathan. It's been probably about a month since I made it to one. I had a friend ask me, "Where have you been? I feel like I haven't seen you in a long time." I gave a pretty nondescript answer. Busy life, you know. But to be honest, we haven't really felt like sharing what's been going on in our day to day lives yet. We've been trying to adjust and find what felt right to us before we let people know. But it's starting to get a little harder not having people know which seems to let us know it may be time.
So, here we go. Nathan was diagnosed with autism spectrum disorder. And since this has become a big part of lives now, we simply can't go around not talking about it anymore.
I started getting a little concerned about Nathan's development when he was about 7 months old. I noticed Nathan was super quiet. He wasn't babbling near as much as he should have been. He would wake up from his naps and wouldn't say a thing to let me know he was up. I had set up an evaluation with Early Intervention (EI) for Nathan's tortacollis. When EI does their evaluation they do a comprehensive evaluation. I mentioned I was concerned about his speech. When they tested him he was 2 months behind on his speech. You had to be 3 months behind to qualify. Friends, therapists, and even our pediatrician said maybe he will just be quiet and then one day he'd just pick it right up. I was still worried.
We switched pediatricians and I meet with a new doctor that several friends recommended. Right from our first appointment I felt so much more confident in the responses I was getting from our pediatrician. You have a concern about this? Let's get a test to confirm. You think you're son is struggling with this? Here's some suggestions on how to help him. Our new doctor wasn't going to push our concerns to the side and "wait and see."
Nathan still wasn't talking much. He really only had a couple of words. It's was really hard to get him to follow simple directions. He didn't respond to his name. He wasn't pointing at things like other kids his age were.
When we went in for our 18 month check-up our doctor did a developmental screening that happens for all 18 month olds. I was answering no to a lot of questions that should have been yeses. The pediatrician decided she wanted to follow-up with us in 3 months (not a typical well visit) to see how Nathan's speech was progressing. I walked out with a referral for speech therapy and was told to call EI again to set up another evaluation.
I started speech therapy at the same place where we were going for Nathan's physical therapy for torticollis. Since we had both therapies to do and our insurance wouldn't pay for both if they were on the same day I was making bi-weekly trips to the therapists' office. Early Intervention also came out and did another comprehensive evaluation. Nathan was behind in both receptive and expressive language and had delays in social/emotional development. We started with a special instructor to cover both language and social development for one hour a week.
Our 3 month follow-up with our pediatrician came up. Things were ever so slowly getting better, but not fast enough for the pediatrician. Our pediatrician recommended getting Nathan tested for autism spectrum disorder. It came as a bit of a shock. There had been things that I had noticed Nathan doing that I thought to myself, "I should keep an eye out for that," since I knew they were signs for autism, but I wasn't too concerned because I was thinking, "Oh, at least I'm not seeing him doing _____." The pediatrician sent me home with a long list of to dos, but she also sent me home knowing that she was going to support us through this process.
I went home and got right on it. Our pediatrician recommended getting Nathan seen by a developmental pediatrician at the Children's Hospital of Philadelphia (CHOP.) They're one of the best in research and care for autism so we felt very confident that we would be in good hands there. I called CHOP that day to get Nathan in to see a developmental pediatrician. The receptionist explained that to get an appointment they would first send out a 12 page questionnaire about Nathan's development, I would fill it out, mail it back in, and after they reviewed the application they would send me a letter with how long my wait time would be. They told me that the wait time for a 21 month old was 9-12 months. MONTHS! It could take up to a year to get him a diagnosis. I was shocked. Our pediatrician had told me it is a long wait period to get in with CHOP, but she would like to get Nathan seen in 2-3 months. Since she knew the clinic coordinator she asked that I let her know as soon as my application was in so she could help get us in sooner. I sent in the application as fast as I could and let my pediatrician know.
I need to take a moment and just say how AWESOME, WONDERFUL, and HELPFUL our pediatrician has been through this process. She kept asking me if I had heard anything from developmental peds and if I hadn't she would email them. Every week until we got in. And because of our pediatrician Nathan got seen in just under a month from when I mailed in his application.
The big day arrived for Nathan's developmental evaluation. We both went in with the mindset that Nathan probably has autism, but we were still anxious. They usually make a diagnosis with 2 appointments, one for the evaluation and one for follow-up (2 weeks later) when the diagnosis is given. If the evaluation went quickly enough they would give us the diagnosis the same day. I really was hoping for this so I didn't have to agonize for weeks and we could move forward with our lives. The evaluation went really well. Nathan acted liked usual, which we really were hoping for so they could have an accurate picture of what Nathan is like. We had a speech therapist and a nurse practitioner running the evaluation and there was a developmental pediatrician who was watching behind a 2 way mirror and recording the session. It only took 1 hour of our 2 hour appointment for the evaluation. The team excused themselves for about 20 minutes to talk privately about their observations and diagnose Nathan. Those minutes seemed forever.
Once they were back they didn't say right away that Nathan has autism. They carefully went over each test, their observations, and where Nathan was developmentally. After looking at the all the information, the developmental pediatrician was confident in her diagnosis that Nathan has autism spectrum disorder. He's somewhere on the mild to moderate range. More specifically his development is that of a 12 month old. Of all the information that day, this was the most shocking. I had expected that if Nathan had autism it would be mild. He had started talking (even if it was just a few words) on his own and he didn't have a lot of severe symptoms. But to hear that Nathan was almost a year behind in his development, that was hard. I was not prepared for that. The specialists took the time to answer our questions, offer us lots of advice, and give us resources.
Now is the time to start therapy and lots of it. We currently are doing 10 hours of Applied Behavior Analysis (ABA), 2 hours of speech therapy, and 1 hour of special instruction every week. We also have 1 hour of occupational therapy every other week for Nathan's sensory needs. Nathan's morning hours are completely consumed with therapy and then he goes for nap time during the afternoon (he still takes a 3 hour nap.) Then it's dinner time, daddy time, bath time, and bed time. His schedule is completely booked! We might occasionally have part of a Thursday morning off for doctor's visits or playgroup.
That's the elephant in the room. Some days I'm okay and some days it's not ok. The best thing right now is that Nathan is still himself. He doesn't realize that anything is different and so he's still his happy, silly, and funny self. I can't get too sad when I have him around. He's loving therapy. Honestly, he's doing so great with all of it. There's a lot to be grateful for and highest on that list, is that I still get to be mommy to the happiest and funniest toddler I know.
So, here we go. Nathan was diagnosed with autism spectrum disorder. And since this has become a big part of lives now, we simply can't go around not talking about it anymore.
I started getting a little concerned about Nathan's development when he was about 7 months old. I noticed Nathan was super quiet. He wasn't babbling near as much as he should have been. He would wake up from his naps and wouldn't say a thing to let me know he was up. I had set up an evaluation with Early Intervention (EI) for Nathan's tortacollis. When EI does their evaluation they do a comprehensive evaluation. I mentioned I was concerned about his speech. When they tested him he was 2 months behind on his speech. You had to be 3 months behind to qualify. Friends, therapists, and even our pediatrician said maybe he will just be quiet and then one day he'd just pick it right up. I was still worried.
We switched pediatricians and I meet with a new doctor that several friends recommended. Right from our first appointment I felt so much more confident in the responses I was getting from our pediatrician. You have a concern about this? Let's get a test to confirm. You think you're son is struggling with this? Here's some suggestions on how to help him. Our new doctor wasn't going to push our concerns to the side and "wait and see."
Nathan still wasn't talking much. He really only had a couple of words. It's was really hard to get him to follow simple directions. He didn't respond to his name. He wasn't pointing at things like other kids his age were.
When we went in for our 18 month check-up our doctor did a developmental screening that happens for all 18 month olds. I was answering no to a lot of questions that should have been yeses. The pediatrician decided she wanted to follow-up with us in 3 months (not a typical well visit) to see how Nathan's speech was progressing. I walked out with a referral for speech therapy and was told to call EI again to set up another evaluation.
I started speech therapy at the same place where we were going for Nathan's physical therapy for torticollis. Since we had both therapies to do and our insurance wouldn't pay for both if they were on the same day I was making bi-weekly trips to the therapists' office. Early Intervention also came out and did another comprehensive evaluation. Nathan was behind in both receptive and expressive language and had delays in social/emotional development. We started with a special instructor to cover both language and social development for one hour a week.
Our 3 month follow-up with our pediatrician came up. Things were ever so slowly getting better, but not fast enough for the pediatrician. Our pediatrician recommended getting Nathan tested for autism spectrum disorder. It came as a bit of a shock. There had been things that I had noticed Nathan doing that I thought to myself, "I should keep an eye out for that," since I knew they were signs for autism, but I wasn't too concerned because I was thinking, "Oh, at least I'm not seeing him doing _____." The pediatrician sent me home with a long list of to dos, but she also sent me home knowing that she was going to support us through this process.
I went home and got right on it. Our pediatrician recommended getting Nathan seen by a developmental pediatrician at the Children's Hospital of Philadelphia (CHOP.) They're one of the best in research and care for autism so we felt very confident that we would be in good hands there. I called CHOP that day to get Nathan in to see a developmental pediatrician. The receptionist explained that to get an appointment they would first send out a 12 page questionnaire about Nathan's development, I would fill it out, mail it back in, and after they reviewed the application they would send me a letter with how long my wait time would be. They told me that the wait time for a 21 month old was 9-12 months. MONTHS! It could take up to a year to get him a diagnosis. I was shocked. Our pediatrician had told me it is a long wait period to get in with CHOP, but she would like to get Nathan seen in 2-3 months. Since she knew the clinic coordinator she asked that I let her know as soon as my application was in so she could help get us in sooner. I sent in the application as fast as I could and let my pediatrician know.
I need to take a moment and just say how AWESOME, WONDERFUL, and HELPFUL our pediatrician has been through this process. She kept asking me if I had heard anything from developmental peds and if I hadn't she would email them. Every week until we got in. And because of our pediatrician Nathan got seen in just under a month from when I mailed in his application.
The big day arrived for Nathan's developmental evaluation. We both went in with the mindset that Nathan probably has autism, but we were still anxious. They usually make a diagnosis with 2 appointments, one for the evaluation and one for follow-up (2 weeks later) when the diagnosis is given. If the evaluation went quickly enough they would give us the diagnosis the same day. I really was hoping for this so I didn't have to agonize for weeks and we could move forward with our lives. The evaluation went really well. Nathan acted liked usual, which we really were hoping for so they could have an accurate picture of what Nathan is like. We had a speech therapist and a nurse practitioner running the evaluation and there was a developmental pediatrician who was watching behind a 2 way mirror and recording the session. It only took 1 hour of our 2 hour appointment for the evaluation. The team excused themselves for about 20 minutes to talk privately about their observations and diagnose Nathan. Those minutes seemed forever.
Once they were back they didn't say right away that Nathan has autism. They carefully went over each test, their observations, and where Nathan was developmentally. After looking at the all the information, the developmental pediatrician was confident in her diagnosis that Nathan has autism spectrum disorder. He's somewhere on the mild to moderate range. More specifically his development is that of a 12 month old. Of all the information that day, this was the most shocking. I had expected that if Nathan had autism it would be mild. He had started talking (even if it was just a few words) on his own and he didn't have a lot of severe symptoms. But to hear that Nathan was almost a year behind in his development, that was hard. I was not prepared for that. The specialists took the time to answer our questions, offer us lots of advice, and give us resources.
Now is the time to start therapy and lots of it. We currently are doing 10 hours of Applied Behavior Analysis (ABA), 2 hours of speech therapy, and 1 hour of special instruction every week. We also have 1 hour of occupational therapy every other week for Nathan's sensory needs. Nathan's morning hours are completely consumed with therapy and then he goes for nap time during the afternoon (he still takes a 3 hour nap.) Then it's dinner time, daddy time, bath time, and bed time. His schedule is completely booked! We might occasionally have part of a Thursday morning off for doctor's visits or playgroup.
That's the elephant in the room. Some days I'm okay and some days it's not ok. The best thing right now is that Nathan is still himself. He doesn't realize that anything is different and so he's still his happy, silly, and funny self. I can't get too sad when I have him around. He's loving therapy. Honestly, he's doing so great with all of it. There's a lot to be grateful for and highest on that list, is that I still get to be mommy to the happiest and funniest toddler I know.
6 comments:
Thank you for sharing your experience and feelings, Alisha. We are here to give all the love and support we can. We love this little guy so much and are glad we get to be his grandparents. Hugs to all three of you.
You're doing such a great job with all of this! xoxoxo
Nathan is so lucky to have you as a mom!
We love you guys! You have a strong mother's intuition & I'm glad you found such a supportive pediatrician.
My heart goes out to you and Brad! What wonderful parents you are and how great your blessings have been during this time! I am so glad you were able to get him diagnosed so quickly and and that you have so many wonderful doctors and therapists to work with. Enjoy this learning time with your son!
Your dad and I have always been so proud of you, and the way you have handled everything that your little family has been going through with Nathan, continues to show your true colors. You are amazing! You continue to teach me so much everyday with your positive and proactive attitude! It melts my heart every time we FaceTime and I get to see that smiling little face!! Nathan is so blessed to have you as his mom and Brad as his dad! We couldn't be prouder of all three of you!! Love you much!!
Post a Comment