The Waitlists.
I remember Nasir’s first proper word; Poppy! This, of course was outside of the standard “Mama” or “Dada”. He was about 2, loved watching Trolls, and he turned around from his seat in front of me and said POPPY! I can’t tell you how monumental it felt and how joyous I was.
Wait… There’s A Problem?
Until this point, I was frequently asking those around me if his speech, or lack thereof, was normal? Shouldn’t he be speaking properly by now? Shouldn’t he at least be forming words? Is it normal for a toddler to sound as if they were rapping faster than Twista? I was a first-time mum, with no guidance and no one to really turn to. Plunket, a child wellbeing support service in New Zealand, stopped coming after the nurse decided a high needs child could take our 15-month check in spot. I was back at work, and it wasn’t flexible enough to take leave whenever I needed so I allowed them to take our spot, but feeling let down and unable to request time off in the near future, our check in was never rebooked.
I really don’t know if it would have made a big difference to Nasir’s progress if we had managed to get another visit. It’s a question I ask myself all the time if I had done right by Nasir in this instance. Surely, the nurse would have picked up that he was also high needs or delayed and needed to be referred to the GP for an assessment, because I had no idea.
Those that I did ask would always say that kids develop in their own time, sometimes they don’t talk then all of a sudden start speaking full sentences. I held onto this; I wanted it to be true so badly. When you plan to have children, it’s not often that the thought of having delays, disabilities, limits, or high needs crosses your mind. You have hopes that your child will have all the opportunities without struggles or challenges beyond that of a typical child, but this kept creeping into my mind as well as everything that comes with it. The fear and worry of what his future might look like; is he going to be bullied, judged, or isolated from his peers? Is he going to be labelled and thrown into a “no hope” box? Will he experience the scolding or discipline of kids I often witnessed when I was at school that couldn’t sit still, struggled to learn, or got easily frustrated or emotional? This was not the life I wanted or planned for my children. Such hard inner torment to rationalise and put aside when these haven’t even happened yet.
Waiting To Know What To Do.
The day I felt like I had permission to be concerned was when I was approached by the Center Manager at daycare in 2020. The way I was approached and how it was dealt with was humiliating and blindsided me, but it did start the process of getting help. The Center Manager had a background in Children with Disabilities at the Ministry of Education, which helped form concern that Nasir seemingly didn’t have the 2000-word vocabulary expected for a 3-year-old. From here, we took him to a doctor at our family GP, but not our usual Doctor. This Doctor said she had no concerns because Nasir was responding to her and the questions, she had been asking him but would send him for a hearing test. This referral was rejected, and it was recommended that the issues Nasir faced could be resolved by Speech Language Therapy. I wrongly assumed that our doctor would send a referral for one, so a couple months later we were back to the Doctor, this time our normal family one, she completed the referral for an SLT through the Ministry of Education who responded that we were now on a waitlist that was further delayed due to COVID-19. From May 2021 through to start of March 2022 we were waiting for someone to help and guide us so we could support our boy.
Of course, this wasn’t the only area he needed support in, but it didn’t solve everything. Plunket NZ offers a service to ALL children in NZ: B4 School checks. This tests children’s vision, hearing, speech, cognition, fine motor skills, and gross motor skills. It was clear to the nurse there were concerns other than ONLY his speech, but she asked me at the end of the appointment if I had any concerns and I think I just let it out. It was really freeing to be able to talk to someone who would HEAR ME, validate me, and point me in the right direction. I had been feeling as though I was drowning because I knew something was up but I had no idea how to get help or support. She sent a referral to Child Development Services; another 10 months wait and just to give me a small anxiety attack, the date of his assessment fell on the not-yet-scheduled one-off public holiday of Queen Elizabeth’s not-yet-happened death. Luckily, we were rebooked a couple weeks later and finally got some answers!
After an appointment with a Doctor, Nasir was declined for a hearing test and recommended to engage an Speech Language Therapist
Confirmation that we had been referred to Child Development Services at the Puketiro Center in Kenepuru
After almost a 9 month wait, we finally had an appointment.
BUT WAIT! The Queen passed and a one-off public holiday to celebrate her life fell on the same day as our original appointment.
I’m unsure if that if I had been more onto it, firmer, or even knew what the heck I’m doing as a mother, that Nasir would be further along than he is now. Maybe we could have introduced more tools, implemented better routines, and looked into other therapies but it doesn’t matter now.
Nasir is absolutely developing in his own time and can speak in sentences, however complete or broken they may be. He is definitely more coherent and if I can’t understand him, his little brother most certainly can!
You may have some questions about what we, as parent’s, were doing to help Nasir’s speech and cognition? That will be in another post as well as some of the tools given to us by our (then) SLT.
Thanks for following our journey,
Elysha