How do you know it really works?

How do you really know this stuff works? As a parent of a child who potentially has autism or another behavioral health concern, the information out there just makes you dizzy. Don’t even bother to google “autism assessment” or “how do I know if my child has autism” because you will get a long list of things, some completely relevant and some not.

Kate is a mom who has a great story to share. Even though she would quickly admit, “It’s been a journey” I am sure she would say that it’s been a much more pleasant, respectful, and well-resourced journey since she came to CLEAR. 

Kate would tell you, “It’s not even day and night. It’s much more than that. It’s like we were wandering around in the dark, looking down a tunnel, and there was finally a light there. Drs. Willard and Kroncke were holding a lantern and saying ‘Here. Come over here’ and I finally knew where to go.”

Read Kate’s story below, or click here to watch a video of her telling it. 

Kate’s Story

C was always delayed developmentally. The new, should be acquired skill always seemed to be on the verge of emerging – like the words that today still seem to be right on the tip of her tongue. You cling to that as a parent. You want to see it – that your child is about to catch up with their typical peers.

When C was 15 months old and our second child, A, was born, C was still not walking or talking. My concern grew. Surely, she was just taking her own time. The doctors didn’t seem concerned – wouldn’t they say something? Make recommendations?

 At C’s 18-month appointment, I asked for a referral to Early Intervention – the physician suggested maybe C was Deaf. I told her there was not a chance that C was Deaf. Not only did she startle very easily to noise, she could hear Mickey Mouse Clubhouse come on from the next town over.

 The physician made the referral to Early Intervention and also referred us to an audiologist to have C’s hearing checked.

 I reached out to the Early Intervention program and was told that they would send me a stack of forms – I was to fill those out and then I needed to bring C into the office for an evaluation. I was confused – the doctor had made it clear that Early Intervention would come out to our home to evaluate C. The woman on the phone assured me that the doctor was mistaken – despite the fact that it would mean taking two children, under the age of 18 months to the office alone, I would have to bring her in.

 I received the forms in the mail – unclear, full of questions that felt like so many fingers pointing at my child, telling me she wasn’t good enough, was failing, I was failing. I struggled as I went through them, marking my child a zero over and over again. She isn’t a zero, she wasn’t a zero, she is by child, my whole life.

 The questions didn’t make sense – they would ask something like, “Does your child speak?” (no – fill in the little bubble that says “zero”), followed by, “Does your child say at least 20 words?” (no – I just answered that my child does not speak – obviously she doesn’t say 20 words – fill in the bubble that says “zero” again), followed by, “Does your child tell stories with a beginning, middle, and end?” (NO. My. Child. Does. Not. Speak. – fill in the little bubble again).

Defeated, I put the stack of forms to the side. I couldn’t finish right now. I would come back to it. It seemed like C would walk any day now. If she started walking, I would know that she is just going to hit her milestones a little behind her peers. After all, Einstein didn’t speak until he was 4.

 Rejoice! At 20 months, C started walking! I knew she would. She was just taking her time, like I thought. The same thing would happen with speech, I was sure of it – better take her to the audiologist just to be sure her hearing was fine.

 I took C to the audiologist. She was not responsive to any of the stimuli they tried with her: calling her name, playing a TV show she was unfamiliar with, having a noisy toy play into the microphone. I left the first appointment incredibly frustrated – it wasn’t until the end of the appointment when it was minutes from over that they finally agreed to try the stimuli I had been suggesting, the “Mickey Mouse Clubhouse” theme song. Surprise! She responded! But we needed to come back again just to be sure.

 At the second appointment they ruled out hearing damage. Back to the doctor I went to find out what we do next to help my child.

 At C’s next doctor’s appointment, I told her physician that her hearing tests came back fine – that wasn’t the problem. Her physician said that C needed a “closer look”; she was going to make a referral to a neurologist to “rule out something like brain cancer”. Brain cancer? Other than the fact that she wasn’t talking yet, my child was wildly healthy. Something didn’t add up.

 I made the appointment with the neurologist’s office. After months of waiting, I got a phone call from the office stating that since the physician who referred us was an ARNP, they actually couldn’t allow me to keep my appointment with the neurologist, I would have to be rescheduled to meet with their ARNP. Despite the fact that I had waited all that time, they would not allow me to see the specialist we had booked with.

 We rescheduled the appointment to a later date with their ARNP and I got started researching other options. I got on waiting lists at a few other facilities, including Children’s Hospital Boston (it is now 2 years later, and I still have not received a call back from any of those facilities). It seemed that every time I tried to get help for my daughter, I was being put into either a cycle of being bounced around to different specialists or put in a line to wait with no guarantees of getting help for her soon, or ever.

 My husband and I own a consulting firm that teaches the Scaled Agile Framework. I had attended the SAFe® Summit and committed to myself that I would attend the next year’s Summit having completed SPC training. I decided that I wanted to go out to Boulder to SAI Headquarters and take the course with the father of the Framework, Dean Leffingwell.

 During one of the breaks in the course, I was seated at my table deep in thought, when it dawned on me – at Summit, Dean had put up a slide during his keynote that said that his daughter had created a framework to get kids with autism diagnosed earlier and more effectively, and that her framework helped connect families of kids with autism with the supports they needed. Dean happened to be sitting typing on his laptop – it was just the two of us in the room.

I worked up my courage and approached. I said that I remembered the slide from Summit and that we had been told that our daughter needed a closer look – that I was frustrated by being shuffled around in a system that it felt like did not care about our daughter. I asked him if he would share her website with me and show me what her book looked like on Amazon. Dean, being the incredible human being that he is, responded with, “How about I put you in touch with her?”

 Dean connected me with Marcy via email and we set up a video chat. Marcy told me about the diagnostic process with CLEAR – that it was a series of video chats, observations, and some interaction with online diagnostic tools. While this was all new to me and felt a little foreign, I instantly felt like I was valued, cared about, and in good hands. I felt like she saw me, she cared about my child, and she would ensure that I got the answers that I needed and that my child deserved. I was 100% on board.

 As we moved forward, we did multiple video chats with my daughter. It was comfortable for her. She was in her own home. This did not involve taking her to specialists, potentially hours away, sitting in a waiting room, being observed in an unfamiliar office by unfamiliar people. This was my child, in her own environment, interacting with me while we had people on a video chat. What child is not completely use to having people phone in on a video chat these days? It occurred to me that this process gives a much clearer view of who my child really is and what her abilities are. It is a no-brainer that you would get a more natural child in their natural environment.

 

Throughout my interactions with CLEAR, the experience that I had with my daughter’s diagnosis was significantly more personal and immeasurably less painful than the experiences I had with other specialists. Was it hard to hear that my daughter had autism? Absolutely – but hearing it after such a collaborative process, where my child was included, understood, and valued, followed by a full report including my child’s strengths, areas of concerns, and what I could to support her growth – it was as though I had been traveling in the dark and suddenly there was someone with a light showing me the way forward. I had a path to help my child. There is no greater feeling of relief.

 I would whole-heartedly recommend to anyone needing answers regarding their child’s behavioral health that they reach out to CLEAR. In fact, when speech did not come for my littlest child, despite the fact that she hit all of her other milestones and was exceptional in her gross motor, I reached back out to Marcy. I knew that I could trust CLEAR to provide me with the answers I needed, and I would have an answer to the inevitable, “What now?”.

 It is true what they say, that “When you have met one child with autism, you have met one child with autism.” My girls could not be more different, but with her rigidity, sensory seeking, and lack of interest in peers, A also is autistic. I didn’t see it coming. It truly is a spectrum.

 But we have a path. Our girls are now both in full time Applied Behavioral Analysis Therapy. They receive one on one therapy all day, with trained therapists delivering programming that has been created just for them. This programming is iterative, constantly measuring the metrics that are created, the programming adapting to fit them as their skills emerge and new needs come forward.

 C is completely daytime potty trained. A starts potty training next month. With the support of ABA, the process has been (virtually) painless. They created a program just for her that fit her needs and implemented it in the office before transitioning it to home. I had tried to potty train C in the past with no success, but with the support ABA provided, C had immediate success.

 Our girls are both responding to interactions in new ways, making eye contact, waving, high fives. They are even blowing kisses :heart melts:

 C now asks for, “Dad” and A called me, “Mom” for the first time a few weeks ago. These are the moments that you so desperately long for when you have a child with autism. The everyday stuff that is so easily taken for granted.

I can’t imagine what our lives would be like today if we hadn’t found CLEAR. I don’t want to imagine. I don’t want to think about what life would be like for my girls if they were not receiving ABA services and making the kind of rapid gains that they are. They deserve the absolute best care possible and there would have been no clear path to get them the help that they needed without CLEAR. When I think of what that would be like, it feels dark and helpless. But the future is bright for our family. Our children have the supports that they need in place, we have the supports that we need as parents, we know the way forward.