The General Diagnosis.
The Assessment.
When we found out our oldest son had Global Development Delay, I was shocked. Of course, I knew something was going on, he didn’t speak normally, but I only suspected an issue with his speech, and naturally I assumed with speech development would come better understanding of instructions or conversation. For this, we had help from the Ministry of Education Speech and Language Therapist. But I had no idea what it meant for Nasir until the pediatrician conducting the assessment started talking about applying for the Child Disability Allowance which would enable us to purchase resources to support him.
I kept my composure and said something that I maintain to this day – I don’t care what I need to do, I’m here to get the help and support we need to ensure Nasir thrives.
The assessment still had to be completely reviewed, this was a preliminary result, but we also had to get further tests for Nasir, I was dreading having to put him through blood tests. When we eventually got the final results back for Nasir, Supry and I had to get genetic testing because they found something in Nasir’s blood tests which disproved our theory that his delay could have been an outcome of his traumatic birth.
A Million Questions.
I cried when we left the Child Development Services center. I called my husband, crying.
I asked why this has to happen to my beautiful boy? Is this my fault? What support is out there for us as a family but more importantly, for Nasir?! Who can we talk to? What can I find out about Global Development Delay? How long will this last for? Will he be further diagnosed with something more severe? How fast or slow will he progress? How far behind is he? Is he aware that he’s behind? If this is genetic, what about any other kids? I was pregnant with my third child. I had to take time off work so I could process and come to terms with this information. I cried for days.
at that time, the ONLY good thing to come from it all was that it deepened our understanding of Nasir and created more compassion to meet him where he is at. We had a really hard time integrating his baby brother into his life. My husband thought he could cognitively comprehend at his age level even though it was clear (to me) that the language wasn’t there.
Finding Support.
Supry and I immediately looked for Facebook support groups and I remembered when Nasir was referred to CDS at his B4 School checks, they suggested getting in touch with the lady at Parent2Parent. I did nothing with this information. This was my first child; I was discovering how to be a parent to what I expected to be the “typical” child. I thought it was SUPPOSED to be this hard, especially without a village. I had been told many times before his B4 School check that there were no concerns with him by doctors!
So, I got in touch with Parent2Parent and asked for information, but they were overwhelmed with requests for their support services and that I would eventually get something but no ETA.
One Million Feelings.
I felt like I was constantly being left with questions unanswered, feelings unresolved, and no guidance on where to get any meaningful support. I didn’t know anyone that was in the same position, no one really talks about the struggles they face, and I get it, but it leaves us feeling isolated, lonely, and misunderstood. I had no one to connect with to swap stories because other parents just had a child with a speech delay or only need a SLT OR their child’s lack of gross motor skills were obvious. Even in the Facebook group, children have real diagnosis accompany their GDD like autism or another syndrome.
So, here we sit today, many questions still unanswered with more piling up but always doing our best every single day.
Goodness, I always feel emotional reflecting on this journey and the experiences we’ve had within it.
If you’re still interested and reading along, my intention is to share this journey, offer support along the way, and answer questions (if we’re able to).
Thanks for being here,
Elysha