Getting an ASD Medical Diagnosis for Jackie

Getting An ASD Medical Diagnosis for Jackie | Outfit Details

Top // Sweater // Pants // Shoes // Earrings // Necklace // Bracelet // Bracelet // Bracelet // Bracelet // Jackie's Dress // Leggings // Shoes

Getting An ASD Medical Diagnosis for Jackie | We Have It

After more than 6 months of waiting on a list, we had Jackie's evaluation with Kennedy Krieger Institute's Center for Autism and Related Disorders (CARD) last week. I still haven't fully processed the experience, it took until Monday to have a full on break down (4 days later). There are a lot of raw feelings and questions but I wanted to share our experience of getting an ASD Diagnosis so that any of you who are waiting to get one yourself can see what you are in for and what to expect. Obviously our experience is going to be a lot different than the typical evaluation. Most people won't have an evaluation done durning a global pandemic. All of our appointments were virtual. But it was just what we needed and probably the best way for us to do the entire process anyway. Like before, I am walking a fine line of sharing our experience and divulging too much of Jackie's personal information, so bare with me!

Getting An ASD Medical Diagnosis for Jackie | Talking to our Pediatrician

You may remember that back in October, we had Jackie evaluated by our county for learning and developmental issues. You can read more about that here. Along with the categorization of Autism, the county was insistent that this was not a medical diagnosis. We would have to get a separate diagnosis from a specialist for that. The day after the county evaluation, I made an appointment with Jackie's pediatrician. I wanted to share with her what we had learned, since we hadn't discussed any of this with her, and see if she could give me a referral for an appointment with a developmental pediatrician.

Jackie's pediatrician is one of my favorite people. She has her own young children and never tries to guilt or shame us into doing something because it's what we are "supposed to do", like when Jackie was still using bottles at almost 3 years old. She defers to the parents when it comes to a sick child, they usually know what something is wrong. When I brought Jackie in and told the doctor that we had her evaluated for Autism by the county and what the results were, she was surprised. But the more I explained, and gave her a copy of my 3 pages of notes, she began to understand. At the end of the conversation, she told me I did the right thing. That I caught something they had missed. There is nothing more validating or empowering than having your child's pediatrician tell you that you are right and they were wrong. Many wouldn't do that.

Getting An ASD Medical Diagnosis for Jackie | Getting An Appointment

Our doctor recommended two local developmental pediatricians for me to contact for appointments. The first wasn't taking new patients so they were a no go. The second, had a 12-18 month waiting list. This was a blow. A year or more to wait? This was insanity. We live in the DC suburbs, there had to be other options. So I went to our health insurance website and started looking for any doctors in a 2 state radius that would be covered by our insurance. After creating a list of 20, my parents, the Husband and I did some research on each one. I wanted the best for Jackie. Finding an excellent practice was important to me. We narrowed it down to about 5 options that were within driving distance, had excellent reviews and reputations and were covered by insurance.

I started making phone calls. So many rejections. No new patients. One year plus waiting lists. Then I called Kennedy Krieger. They are located in Baltimore, Maryland and are lightly associated with Johns Hopkins. They are very well known, well regarded and cover a variety of issues, including Autism. In order to even get on a waiting list, we had to submit an application along with our concerns, any other evaluations we have had and Jackie's medical history. This is the case with any developmental pediatrician. It is a process, no matter what. But we were accepted. They agreed to evaluate Jackie, with only a 6 month waiting list. We were thrilled. I sent CARD all of the information I had, all of the results we had been given and waited. I did put us on a short notice wait list. This meant we would be notified if someone else had cancelled an appointment and we would have about 24 hours notice to get to Baltimore for the evaluation. We felt like this was doable and may get us an earlier appointment.

Getting An ASD Medical Diagnosis for Jackie | 6 Months Later

Our 6 months was up in April. Of course, before that came, the world was hit by COVID-19. Nothing was normal and I expected that it would push back when we could go to Baltimore. That didn't change how I approached Kennedy Krieger though. The first week of March, I started calling and leaving messages with the scheduler. I wanted them to know that I wasn't waiting for them to come to me and I wanted the first available appointment. I didn't get an response in March.

In April, I stepped up my game. More calls, more messages. I became that mom. But it worked. Last Monday, I got the call. The scheduler was very nice, she didn't seem at all annoyed with all of my voicemails. She informed me that all of the appointments had been shifted to virtual video calls and asked if that would work for us. When I agreed, she said they had a cancellation for that week and we could start appointments on Wednesday! I was shocked. I thought we would have to wait several months. That when they called, it would be to schedule an appointment 3-4 months in the future. Two days was amazing!

But my anxiety sky rocketed. I developed hives around my mouth in a matter of hours. Some of those hives developed into a massive cold sore. Looking back, I was terrified. Terrified that they wouldn't see what we lived with every day. Terrified that we weren't doing enough for Jackie. Just terrified.

Getting An ASD Medical Diagnosis for Jackie | Appointment One

The first appointment was with the developmental pediatrician and a speech & language pathologist (SLP). We started off with a parental interview and then they observed Jackie and had us do a few things with her. Overall, the appointment was about 1.5 hours. It went so well. Both the doctor and the SLP were amazing, not a surprise considering they work at CARD. Nothing we discussed or they observed was much of a surprise. We were all on the same page and we officially had a medical diagnosis of Autism Spectrum Disorder (ASD) for Jackie.

Getting An ASD Medical Diagnosis for Jackie | Appointment Two

The next morning, we had the second appointment, this time with an Occupational therapist. Her job was to observe Jackie and find everything she is struggling with so we can address them. This was definitely the hardest appointment. Things we didn't know were issues or places we thought Jackie had progressed, were discussed. They were just things we didn't realize were things that needed attention. It's hard to hear this as a parent. We have been trying to do everything we possibly could for Jackie. And it was frustrating that the county hadn't caught any of it. There were so many things that could have been addressed and put into Jackie's IEP at school but weren't.

While it was a very emotionally draining, 2 hour appointment, it was still so good. We loved the OT and she was so great with Jackie. And honestly, doing the appointment via video allowed us to show the OT Jackie's toys, bed and natural environment. She even got to see Jackie ask The Husband to get out the guitar and see Jackie play it. I feel like we got so much out of that 2 hours, even if I wanted to nap for a week after.

Getting An ASD Medical Diagnosis for Jackie | Appointment Three

The last appointment was with a counselor. I think this appointment is usually to ensure that the parents understand the diagnosis and have the emotional and community support they need. Books and organizations were suggested, including Autism Speaks. For us, this wasn't news. We already had the evaluation from the county and we already knew Jackie likely had ASD even before that. We have an amazing family and community support system. The counselor was actually impressed.

Getting An ASD Medical Diagnosis for Jackie | Why A Medical Diagnosis Matters

Now that we have a medical diagnosis there is a lot more to do. Having a medical diagnosis means we can get OT, ABA Therapy and Speech Therapy for Jackie that is covered by insurance. It is also a lot easier to get into these therapies with referrals from professionals. So now, I need to find them. OT and ABA Therapy are going to be harder because of COVID. Many places aren't open and have long waiting lists. And I need to research and find places that would be a good fit for Jackie. Luckily, CARD has a virtual speech therapy program that we are going to participate in which will give us a jump start while we look for something more permanent.

We will also be working with an eating specialist to help expand Jackie's diet. This will be huge in helping her get all of the nutrients she needs!

Getting An ASD Medical Diagnosis for Jackie | How I Am Doing & Thoughts

Like I said, it took a few days for all of it to really sink it. But in the time between, I was just exhausted. I felt like I was drinking from a fire hose. There is so much to do and so much to change to ensure Jackie has the best life. It is honestly overwhelming. I haven't had a lot of motivation to do much of anything. On Monday, it finally all hit me and I had a full on break down. I sobbed for a solid 30 minutes. I found a closet and hid so I could just let it all out. It was very cathartic. I needed to just release everything I was feeling and just be. Now, I feel like I am on the edge of crying most of the time. Not because of the diagnosis but because of everything that needs to be done. And some frustration about the current situation and the constraints it puts on us.

Paris keeps telling me that I need to give myself some grace. That I need to allow myself to feel what I am feeling. She has been amazing. She tells me to go take some alone time or take a nap. I am trying to not bottle it all up, but it's hard.

The Husband and I have always been on the same page about how to deal with all of this. Whatever Jackie needs, she will get. We will do everything we can for her. As a family, we have the most amazing support system and access to a lot of resources. And we will use them.

At the end of the day, Jackie is still our Jackie. And as she has shown us, she responds so well to therapy and intervention. Her progress during her limited time at school was amazing. You can read more about that here. Jackie is smart and sweet, loving and fun. I made a deal with Heavenly Father to bring this little girl into our family and I take that very seriously. We are so proud of her and love her so much.