No parent ever wants to admit that their child has development issues, is slower than the norm or ‘special’. We want our kids to be healthy, happy, and able. But sometimes it turns out that they need that extra bit of support and TLC to achieve their milestones.
Autism, however mild or severe, is one of the scariest words for a parent to hear.
When Etienne (2.5yrs) was younger, he did not like affection or people very much. If you got in his face you were met with an open palm slap. And if a stranger acknowledged him and said ‘Hi’, he would scream at them as if to say ‘get away from me’. We took it as normal for that time as our other son, Chance (4) also went through a ‘stranger danger’ stage previous “Stranger Danger” blog here . It seemed to drag on however, so David and I decided that we would make extra effort to teach our child to be more affectionate and be ok with eye contact. We purposely got in his face, we cuddled him regularly (even when he was blowing up about it), we put him to sleep making eye contact and used his hand to touch our faces embracingly. It took a little while but our efforts paid off and now our little man is great with eye contact, affection and social situations with new people. We also put him into the best school (pre-primary) that we could find that catered to smaller classes and the individual attention and found that he was slowly adapting and interacting with other children.
While making great progress, he’s also missed a fair few developmental milestones. 2.5 years and not pointing, only a few inconsistent words and only just started chewing his food properly, are probably the ones I worry about the most. David and I sought out help from a paediatrician who sent us to an ENT. At first they thought it was a hearing issue. 2 weeks of tests later, they told us his hearing was perfect. Etienne was just really good at ignoring people and sounds.
No hearing issue meant they had to look at the other side….the spectrum side of things. The speech therapist suggested we started to do some therapy to help him with the communication side of things, hoping that once he could speak, some of his other odd behaviour would fall away. By odd behaviour, I mean hand flapping and funny blinking and hand gestures which we have identified as ‘self-stimulating behaviour’ or ‘stimming’.
See sometimes kids ‘stim’ to entertain themselves and when they are bored they make up games for themselves. This becomes habit and their ‘go to’ reaction to some things and feelings. Sometimes kids (and adults) stim because of anxiety, excitement or for comfort. (nail-biting, doodling, pen clicking are common forms of stimming0. And sometimes it’s a sensory issue. The latter is the more serious. Anyway our kid was stimming and we needed to know why, because it felt like he was so distracted by these actions that he failed to notice us or situations that he should have been learning from and mimicking.
Speech therapy was progressing really slowly. I felt that I was driving him to the other side of town for a short controlled play session with a speech therapist and that until we could tackle the stimming problem he would not have the attention to learn to speak anyway. So after doing some more research I sought out an Occupational therapist to assess our little man.
The OT came over to our house to observe Etienne in his own comfortable environment. After spending a couple of hours watching, (Etienne pretended the OT wasn’t there the whole time), He told us we might be dealing with some mild sensory issues do with the vestibular and oral systems. The vestibular system relates to the child’s sense of under or over stimulation to movement (can explain hyperactivity). And the oral refers to mouth sensory processing (which may explain sensitivity to food textures and delay in chewing, speaking).
The OT gave us a questionnaire to fill out. The questionnaire that assesses your child’s development against the normal milestones of other children his age, and based on the results would determine how behind he was or how far on the spectrum (mild, moderate, high, severe) he would be classed as. An intervention plan is then derived from this information. “The good old questionnaire”: like many, I’m a big fan of ‘Dr Google’ and had taken many questionnaires similar to this one, so I already knew they would tell me that he would be mild to moderate… David and I have filled the questionnaire and have handed it back for scoring and are waiting for the OT to come back to us with results and action plan so I will keep you posted in the next blog.
The thing is, if we had taken this questionnaire 3 months back, there would be a whole lot of milestones that we would have ticked ‘not achieved’ and if we retook the test in 3 months time I’m 100% sure some of those answers would be different. I see the progress that my son is making, but it’s just a lot slower than other kids his age. David and I decided that the label that we put on him based on those results would be reserved for this current stage that he is in right now and not carried out forever. We will be reviewing those questionnaires often to keep the diagnosis accurate and current.
I find myself wishing that it is a behavioural issue or ADHD or just a social delay for which he can play catch up on, because as far as I have read and understood, Autism and ASD and sensory issues don’t go away or get cured, we can only learn how to manage them so it doesn’t affect everyday life and development. I find myself asking what I could have done better as a parent and sometimes the guilt is overwhelming…
So there it is, my last 6 months of anxiety summarised into a few paragraphs, in hopes that other parents, professionals, friends and therapists dealing with these kinda issues may offer their stories, advice and reassurance.
The biggest thing is: I’m here on an island (Mauritius) that has minimal support for these kind of issues, (parents here almost are in denial of children’s behavioural and sensory issues, because they are embarrassed and scared of being judged), and I know that if we want the best chance to turn it around, we need to intervene early. It makes me want to pack up and run back to Australia as fast as I can, but then, with the cost of living comparison, I might have to work so much that I may not have the time to dedicate to develop my child the way he needs there, like I have the time here. And what about how all this will affect my older child? Will all this time dedicated to Etienne mean we might overlook Chance’s progress or unintentionally make him feel neglected? And what if we can’t afford treatment?… So what do I do? Take things one step at a time and educate myself as much as possible… Fuck parenting is challenging sometimes…
Thanks for taking the time to reading my story so far… Please share and comment as you wish Xx