No, we're not talking about the weather today.
My child has autism. It’s the non-verbal regressive form of autism. If he remains as cognitively delayed as he is, he’ll need life-long care. We’re ready to provide that. Thankfully, other groups exist to provide the kind of care he may need.
Local agencies advertise that will work with families like mine. They can help us to get the sort of support children like my son could need as he ages. With how much support we anticipate Ronan might require, tapping into local and state service is a godsend. But the process to secure those services? It’s lengthy and daunting. I know this. But nothing could prepare me for the emotions that came over me as I started the process.
I played phone tag a few weeks ago with a representative from an agency who said she can assist me. Responsible for screening incoming clients who may need long-term special needs services, I hated to miss her return phone call. In our area, the wait list for services isn’t just a mile long; it’s years long. According to other parents, it’s at least 5 years long. So, when the representative and I were finally able to connect a few days later, I made sure to be prepared.
I plugged Ronan in to his favorite activity - the Wii. It would surely keep him occupied while I was on the phone.
I had my list of questions ready. There were many.
I had documents close by to reference. The stack was at least 2” high.
I had my calendar open. I was ready to cancel everything from here to next December to make sure Ronan got an appointment.
We started the phone call with pleasantries and then got down to business. I explained why I’d called her office earlier. I have a son…he has autism…he has several medical issues as well…I understand he may qualify for services…I believe that there’s a wait list…can you tell me what I need to do to get him on that list?
Needing to make sure my request would later be routed to the right program, as there were others that this group represented, I was asked to list Ronan’s diagnoses.
“Okay, well, he has autism, and seizures, and some GI issues. He’s also developmentally delayed, is non-verbal, and has neuropathy. He goes to therapy - physical and vision, and has been speech and occupational therapy also. He has the potential to wander, requires 1:1 assistance when eating, and oh, and he has some eye and endocrinology/growth issues as well.”
I paused then said, “Gosh, he’s got a lot going on, doesn’t he? I mean, I know he does, but to say it all out loud like that…” My voice trailed off.
Not responding to that particular comment, the woman from the agency continued, “So autism, and let’s see, let me get the right form.” I could hear her rustling through some papers.
She continued, “Do you have an IQ score for Ronan? Do you know if it’s below 70?”
Anything below 70 is considered intellectually disabled, or having cognitive limitations, or having a mild to severe mental impairment. Even though I think Ronan is a genius, in my heart, I know that on paper, his intellect measures much, much lower.
“I don’t know if I have an actual number. Let me look on some recent testing,” I started. “I have that paperwork right here.”
I thumbed through one of the files that I had made sure to have available during the phone call. Yep. There is was. The IQ test. Hunting for the score, though, I couldn’t make sense of the report.
I said, “I see a range of numbers, but not a specific statement that says, ‘Ronan’s score is…’” I read off some parts of the report, and I mentioned the numbers in one of the tables hoping that was sufficient.
She replied, “Okay, thanks. We can work with that."
Assuring me that we’d be able to use that report for his screening, the rep said it sounded as though we had enough documentation to be able to move onto the next step to get on a list for services. In order to continue the screening process, I’d next need to come to the agency’s office. I’d have to bring other documents that reflected Ronan’s delays, fill out some paperwork, and bring Ronan with me. Would we be available to do that in two weeks?
As much as I wanted to say no because admitting on paper and in person what my child can and cannot do is never easy. But I knew that that was all part of the process, so I quietly replied, “Yes. Tell me which day, and we’ll be there.”
What Ronan can and cannot do. That changes. He has his good days and is able to retain much of what he’s learned. He, like all of us, has bad days, too. Those bad days may see regression either of a skill or a behavior, or worse, aggression toward someone. We sail through the good days always saying thankful prayers as that day draws to an end. We pick ourselves up off the floor after a bad days and pray that tomorrow will be better.
Always trying to find something to celebrate, we gave a big round of applause not too long ago.
For two years we’ve been trying to teach Ronan how to complete a simple task – clear the table. Mind you, it’s only his plate and his cup that he’s been asked to clear, but he can now successfully bring his dishes to the kitchen counter. He does it consistently, without prompting, and with a great amount of pride.
We whooped and hollered with glee the first time Ronan signed that he was finished eating, when he motor planned his way out of the dining room chair, when he stood up, and when he reached for and held onto his plate and his cup without dropping them. We held our breaths as he walked slowly into the kitchen with the dishes and put them on the counter and not in the trash can, because that, my friends, is huge progress.
To a non-autism family, it may seem silly to cheer as loudly and happily as we did. But it was monumental. What Ronan accomplished wasn’t anything close to what his typical peers in non-autism families are accomplishing right now, that’s for sure. I try not to compare what they are doing and what Ronan is not doing. But I do compare.
Other teenagers we know are maintaining their position on the honor roll. They are getting acceptance letters into prestigious high schools. They are making home runs and being asked to join a travel soccer or baseball league. Ronan’s peers are literally and figuratively leaps and bounds ahead of him. I’m happy for them. Really! I am so very happy and so proud of these kids. But I’m also sad. I’m sad thinking that it’s too bad that Ronan isn’t able to join them on the sports field, or in the classroom, and within their social circles. Yes, they invite him in (and I’m so grateful for that!), but it is so difficult for him to keep up with teens and to engage in what they are doing.
While Ronan’s peers are accomplishing typical skills, I’m trying to secure a spot on a waiting list for services that’s 5 years long. We may live in the same time and in the same space, but our lives are worlds apart.
The emotions that come with parenting a special needs child are the same as the ones a typical parent cycles through. We each feel joy. We each go through moments filled with happiness. We each endure sadness, anger, and frustration – sometimes all on the same day! For as long as I’ve been checking boxes on paperwork of what Ronan can do, and filling in questionnaires of what he cannot, those emotions have always been right there under the surface. I don’t like that some of them can pop up quickly, like when the agency rep followed up with me and said, “It sounds like Ronan’s IQ is low enough to qualify him,” but they do pop up. That's when my smile fades, a wave of sadness envelopes me, and tears begin to stream down my cheeks.
Ronan’s low IQ slams so many doors elsewhere, but it opens other ones in the special needs world. It’ll open doors to the agency that’s promising to help us plan some of Ronan’s future.
Our screening appointment is this week. I’m gathering my files in order to be well prepared. I’ll bring Ronan’s latest medical reports with me to reference. I’ll have his intellectual and educational reports on hand to show justification for services, too. I’m not sure what I’ll have to fill out, but I’ll make sure that I answer each of the intake questions very carefully.
I’m going to bring Ronan’s diaper bag, a change of clothes, snacks, and some of his favorite books with us as well. I’ve never thought to bring them with me before, but this time, I think I’m going to bring some tissues. I certainly hope that I don’t cry, but if this appointment has me concentrating on everything that Ronan cannot do – which is quite a lot, I’ll be prepared to wipe away any unexpected tears I may find rolling down my cheeks.
Cathy Jameson is a Contributing Editor for Age of Autism.