In my experience it is best for a new mommy to smell as close to her natural self as possible when cuddling and loving her new-born. Take notice of the smell of the perfume you are wearing, and the body lotion, bath soap, talcum powder, antiperspirant, etc. These odours can be over-whelming to a new-born, and if that new-born so happens to have SPD, you cannot begin to imagine the discomfort.
I noticed early on that Hein-Chris would start crying when I picked him up after I had a bath at night, or just after I got dressed in the morning. I would typically go heavy on the Issey Miyake, and plaster on the coconut body balm before my pj’s, thinking nothing of it.
It took a trip to our registered clinic sister (and midwife) to alert me to the fact that my baby might be finding me - well (not easy to admit) - smelly. He quite simply could not stand the smell of me (nice).
I put the perfume away, switched to an odourless bath soap, antiperspirant and body lotion, and started washing my clothes in scent-free detergent (with no added fabric softener). It was noticeable how much better Hein-Chris responded to me after I made the change.
Ours was a severe case so I went on to remain odourless for the next three years. Dark days indeed. I am happy to report that I am back to wearing my beloved Issey Miyake and loving every moment.
Baby photos courtesy of Taryn van Rensburg Photography
Hein-Chris did not allow me (or anyone) to lovingly touch, kiss or hug him until close to the age of four. Physical touch is extremely uncomfortable for the child with SPD as the brain registers it as imminent and immediate danger. The neurotypical child will find comfort and solace in being stroked, kissed and hugged; the child with SPD will find it intolerable.
Today, Hein-Chris' hugs involve him sidling up to me so we’re standing side by side, and me giving his outside shoulder a little squeeze. For him and I that's huge. Most recently Hein-Chris tolerates a kiss on the top of his head (on his hair) without too much drama - most of the time - but certainly not always.
The bottom line is that it is not fair to expect a child with SPD to dole out kisses and hugs - not even to close family members, including Mommy and Daddy. It is quite literally physically impossible for the child to allow such contact. The child with SPD will translate these fairly intimate, but mostly innocuous exchanges as intensely threatening. Based on my own experience, the child will recall these interactions with revulsion and go to great lengths to avoid similar contact. The child will not be able to interpret his/her intense reaction (nor voice his/her discomfort) and might be plagued by feelings of guilt and shame. The best way to show love and affection to a child with SPD is probably the high five. As far as SPD goes, the high five equates roughly to a bear hug in the neurotypical world.
Adults should not be offended by a child’s choice not to engage in a kiss and/or a hug, but take great pleasure in sharing a high five. Consider yourself blessed that a child with SPD would offer a hand for you to touch. It’s an honour being allowed so deep into his/her personal space.
(As an aside, if you are unfamiliar with a child with SPD, do not respond at all in the event that the child starts fussing or having a meltdown. Do not approach the child. Do not touch the child. Talking to the child will escalate the child's discomfort. Basically your every instinct will most probably be incorrect. You are not doing anything wrong, but you are acting based on principles that apply to a neurotypical child. Leave the child for Mommy, or Daddy, or whichsoever caregiver is around, to deal with. Your best course of action is to do nothing and not judge.)
Third photo gallery courtesy of Taryn van Rensburg Photography
I cannot prove this, but I sense exposure to animals - domestic and/or farm - from a very early age, has been hugely beneficial to Hein-Chris. While I could not touch or hug my son until he was about four years old, he allowed our Shih Tzu, Flynne - who took a maternal liking to him from Day One - to snuggle up to him and love him like I wished I could.
Having experienced this, I made a concerted effort to take Hein-Chris is Flag Animal Farm (just north of Salt Rock) (http://flaganimalfarm.co.za/) every chance we got (which was often). We became a fixture soon, and while Hein-Chris wasn’t too keen on the farm animals at first, he quickly became a fan. Animals were quite literally the first living creatures Hein-Chris would comfortably allow in his personal space.
It boggles my mind to this day. My son was deathly afraid of - well - basically everything, but animals he did not mind. Today Hein-Chris is not scared of any animal and thoroughly enjoys engaging with Flynne and our pet bunnies (yes, we have bunnies…sigh!) as well as any other animal that crosses his path. I am forever grateful for the confidence and empathy these creatures have instilled in my darling boy.
Ask, and you will soon realize that everyone has a different answer to the question: “Who diagnoses SPD?” The question itself seems to presuppose there exists a single entity that possesses all the education, training, expertise, instinct, knowledge, and experience to definitively diagnose Hein-Chris; one specific set of professionals within the medical fraternity that single-handedly has the final (and only) say in setting up my child for the rest of his life.
When I visited our paediatrician a short while before Hein-Chris’ second birthday, all I could offer was a simple: “There’s something wrong with my child. I don’t know what.” I certainly didn’t realize, at the time, how very well I was being positioned - by mere chance - for what lay ahead.
The word “autistic” quickly filtered into our discussion, and that is when I was given - what I consider - a brilliant piece of guidance: The diagnoses of an Autistic Spectrum Disorder (ASD) is very sensitive and outside the realms of what our paediatrician (who happens to be a brilliant professor in paediatrics) felt comfortable diagnosing, and we were referred - by him - to a neurodevelopmental paediatrician.
(In South Africa, there aren’t very many of these and they are mainly to be found in Johannesburg and Cape Town. Recently though a neurodevelopmental paediatrician opened practice at Netcare St Augustine’s Hospital, and this is a significant boon for Durban and surrounds.)
Hein-Chris and I were on a plane for Johannesburg a short two weeks later to meet Prof Lorna Jacklin, a neurodevelopmental paediatrician with more than 30 years’ experience in paediatrics, paediatric neurology and early childhood neurodevelopment. She spent two hours observing Hein-Chris before diagnosing him with Sensory Processing Disorder (and ruling out autism). She wrote a detailed report and sent me back to our paediatrician - report in hand. Our paediatrician read the report with interest, referred us to an Occupational Therapist (OT), Kerry Evetts (who was experienced and well-trained in Sensory Integration) and asked her for a detailed assessment report to be returned to him as soon as possible. We saw Kerry quickly after, obtained the required report, and were back at the paediatrician’s surgery without delay.
Based on Prof Jacklin and Kerry’s assessment reports, our paediatrician was confident that Hein-Chris was indeed not autistic, but suffered from SPD, and that no additional assessments were needed at the time. We discussed a treatment plan, pushed it passed Prof Jacklin and Kerry, and once everyone was comfortable with the approach, we started treatment (i.e., occupational therapy once a week, to be increased to twice weekly as soon as Hein-Chris settled into the routine).
And just like that a culture of information sharing was fostered. I shared every report Kerry sent me, with our paediatrician and Prof Jacklin. When Kerry heard we’d be seeing Prof Jacklin (we typically visited her twice annually) she’d write a letter detailing progress made, to which Prof Jacklin would respond with additional suggestions and interventions that Kerry might incorporate into her sessions with Hein-Chris.
His Team of Experts took shape - very organically - all with a common goal to ease his endless battle with all things sensory.
Thus, when I offered steps in my first blog to see a paediatrician, a neurodevelopmental paediatrician and an OT to have your child diagnosed with SPD, it was not a made-up list, but indeed the exact course of action I was guided to take (by some brilliant medical minds) when first I started down this path. It was (1) our paediatrician, (2) Prof Jacklin and (3) Kerry - not me - who insisted on keeping the lines of communication open among themselves so as best to address Hein-Chris’ specific needs. I sense that this might be the single most important factor in Hein-Chris’ amazing success over the last four years.
In addition, I am sure that if an assessment by a clinical or educational psychologist, or speech therapist, had been required at the time the diagnosis was made, I would have been thus informed (and I am sure there are cases where this is indeed the case). However, at the time, all three medical practitioners agreed on the diagnosis and treatment, and we were off.
To this day, I share all Kerry’s (now Ashley’s) progress reports with the paediatrician and Prof Jacklin, but now also with an educational kinesiologist and a clinical psychologist who have since joined Hein-Chris’ Team of Experts when the need for their intervention was identified. What proved to be incredibly useful was that Hein-Chris was referred to specific practitioners based on his Team of Expert’s intimate knowledge of my little boy. There was no need for me to scurry around asking for references for good kinesiologists or psychologists. I was referred directly to the best there was for my child.
I sense the same benefit will apply if it so happens that Hein-Chris requires medication to deal with his anxiety somewhere down the line. He has a paediatrician and a neurodevelopmental paediatrician in his court, who both have extensive insight into his unique requirements. I will not have to present my child to an unfamiliar specialist and expect him/her to make an informed decision about how to medicate my child. The ground work has been laid. Whatsoever Hein-Chris needs, his Team of Experts are best position to offer.
“Who diagnoses SPD?” Based on my own experience, a dedicated team of medical experts/practitioners working closely together to provide Hein-Chris with the best possible care. They draw from a pool of shared knowledge which is second to none. I wouldn’t wish anything less for my darling boy.
Note: Prof Lorna Jacklin has since retired. My very best wishes accompany her. I will remain ever grateful to her for all she has done for Hein-Chris and our family.
This week, I add to last week’s blog post as I share the ways I have learnt to manage Hein-Chris’ anxiety levels. We employ an array of stress reducers, and happily share those that Hein-Chris responds to best.
Baby photo courtesy of Taryn van Rensburg Photography
Hein-Chris, as a new-born, had a single response to anything and everything, and that was screaming (violent crying leading to shortness of breath, and sometimes vomiting).
After Hein-Chris was diagnosed with SPD around his second birthday, I finally understood why the first two years had been so incredibly traumatic. My darling son was in a state of constant fear. He was physically, mentally and emotionally exhausted - and only two.
I read mountains of books spelling out the details and treatment of SPD (scary stuff); I trawled the Internet for advice; I listened intently when Hein-Chris’ paediatrician, neurodevelopmental paediatrician and occupational therapist spoke; and I watched my child closely. It turned out he’d be my quintessential teacher when it came to learning how to manage his anxieties.
Below I relay a few of the anxiety reducers Hein-Chris best responded to as I endeavoured to keep his fears at bay.
In next week’s blog post, I will unpack a few more of Hein-Chris’ preferred anxiety reducers i.e., daily routines, social stories, swimming, Eddie the Teddy, etc.