Norrie is the disease that keeps on giving and not in a good way. I remember when we learned of Will’s visual impairment, we were waiting for results on whether it was FEVR which is just eye related or Norrie which comes with other disorders. I remember praying and feeling sure it’d just be FEVR, yet testing came back as Norrie and that was devastating. Even with Norrie there is such a range, it can be predominantly eyes or it can be eyes, hearing, cognitive disorders, psychosis, erectile disfunction, seizures, and more. I’ve been holding on so hard hoping my boy wouldn’t have to deal with any more difficulties. That hope was gone in the blink of an eye as we now face William’s Autism diagnosis.
About 4 months ago William had a drastic change in his behavior. My happy go lucky boy who was easily entertained seemed to do a 180 overnight. Everything was a fight and would send Will into a screaming, self harming fit. He couldn’t wash his hands, eat a meal, walk from one place to the next without throwing himself to the floor screaming and beating his head against whatever he could find. In the beginning I kept thinking he must be sick or something physically must be wrong. We had 3 urgent care visits and 2 pediatrician visits in a month. 2 out of the 3 urgent care visits we did find a little cold or ear infection brewing. The one visit I took him in because he had been screaming all day with no other symptoms. They did a full physical, bloodwork, and x-rays and nothing was found. This trend continued and I felt the frustration was surrounding communication and his inability to communicate needs. I reached out to our Early Intervention service coordinator to set up a speech therapist and that was the beginning of what has turned into a long journey.
Speech therapy was booked out a few weeks so we got the first available and in the mean time did our best. Will was going to a school program 3 mornings a week at the time where he also had access to a speech therapist. I asked the school therapist what she had been seeing so I could share with the in home speech therapist. She began to explain to me how she felt strongly that William is a Gestalt Language Processor. This was the first I heard of this so we stood in the hall for a half hour as I tried to understand. She explained William thinks and speaks in large phrases or stories that are often not understandable or contextual but have a meaning. She also explained she had at times used a speech device in school to help William communicate. Sadness immediately hit me as I cried the whole drive to work with little to no understanding. The sadness soon turned to frustration and anger. The school had been seeing these signs and talked about this gestalt language processing as if it was a fact and here I had been living in constant frustration for a month with none of this information was communicated with me.
Our Speech therapist through early intervention came to the house and within minutes agreed with the school that William is a Gestalt Language Processor. Within an hour she gave us understanding and actual tools to work with William. We had to change everything about how we talked to Will. Instead of asking him questions like “do you want milk?” we now needed to give him the words as he would use them “I want milk” “I am hungry, I want apple” I am frustrated”. And if he said something not legible we were supposed to acknowledge it and even repeat it like it made sense. It was very upsetting to not be able to talk to my child how I wanted but within 2 days I saw a difference. William was less frustrated and we had some understanding of what each other were trying to communicate. When I
saw the benefit I immediately started reading and listening to everything I could on this type of language processing. At first it felt very optimistic as if we had cracked Will’s code, but the more I read the more Autism kept coming up. All individuals with autism are gestalt language processors however not all gestalt processors are autistic. While I was coming across autism a lot in my research it still seemed there was a chance this was just language. I listened to a podcast that explained while being gestalt processor doesn’t mean you have autism, if language isn’t progressing and speech therapy is needed it is likely that the child is autistic. As I was learning this the progress we had made seemed to be stalling and the daily frustrations were heightened again. We knew there was more going on.
William had his yearly neurology appointment in February and at that time she did put in a precautionary referral to nuero psych for psychiatric screening. I was told the waitlist was 6 months to a year and I’d get a call in August. At the time this didn’t feel urgent but now it was. Through some string pulling we got on every waitlist we could and got a call with an appointment offered within a week. We snagged it and cleared our schedules. The diagnostic process was a 3 hour appointment. There was a Q&A with us, a play assessment, and a full physical. One of the questions that really stuck with me was “if there was a group of kids laughing and playing on William’s right and an idling car on his left which would he go towards?” My child would choose the idling car over all else. It was clear we had an autism diagnosis which we were anticipating but the big question was, where on the spectrum is Will???? The doctors tip toed around that question as there is no telling for sure. The more we pushed the more we got the answers we were dreading. Autism is given three levels which are chosen based on how much therapy and support the child will need to function day to day. We were told William has a very high need and likely will for the rest of his life, and we were given a level 3 autism diagnosis. The doctor talked about the basic skills he is worried about with William like potty training, and dressing. He made it clear William will very likely never be capable of living on his own and will need day to day support for the rest of his life. Jon and I were too overwhelmed to function. How do you even begin to adjust your life to care for your child forever on a basic functioning level. What happens to him when we die?
This journey is just beginning. I know William will be capable of potty training and dressing but what more will he be capable of? That’s the scary uncertainty we face. In the meantime in the midst of grieving we have no time to spare. We were told age 6 is key for language, and if William’s language isn't progressing by 6 it becomes incredibly difficult. As we suppress the sadness and try to press forward and be as aggressive as possible with therapies every moment is a struggle. Early mornings, constant phone calls, appointments, and endless searching for resources seem to be the norm for us. We are only beginning and the fight is one that feels exhausting and like one we can’t win. Our focus now is getting will ABA therapy. While I hope to dedicate a post to explaining ABA for now best explanation is that it is 1 on 1 intense behavior therapy focusing on basic daily tasks like hand washing, bathing, toilet training. To be successful the best situation for Will is 20-30 hours of ABA a week. I have called every phone number I can find as many work off of waitlists and even if there isn’t a waitlist it seems to take weeks to moths to get therapy started. We will continue to fight daily for the best outcome for William. One thing has been made clear from multiple specialists that every skill William learns, will only come with a lot of effort from us teaching him. Stay tuned as we brave this new uncertain rode ahead.