The boys accompanied their dad to Burnedale on the weekend. They had a perfectly splendid time, and if I am to believe all I am told about the outing, Hein-Chris spent amble time on the swings, apparently going as high as the laws of gravity, motion and (hopefully) common sense would allow.
I could but smile as they excitedly relayed the events of the day. I remember a time when such an excursion would have been impossible. Absolutely, unequivocally impossible.
Hein-Chris’ introduction to occupational therapy took place soon after his second birthday and around the time he started nursery school. He attended weekly, 45-minute sessions for the first year, and then twice weekly sessions the year after. He is now back to weekly, 45-minute sessions, and all indications are that these will continue for at least the next two to three years.
That’s the short version.
The reality of it was astonishingly different.
Hein-Chris’ introduction to occupational therapy can best be described as a horrifically hellish ordeal that ground him, me and (probably) his brilliant occupational therapist (OT), Kerry Evetts, down to our cores. As the mommy in this situation, I was gutted by the toll it took on my darling boy. It was frustrating. And heart-breaking. And very, very hard work. I was literally expecting the impossible from my precious two-year-old.
There quite literally was nothing about occupational therapy that sat well with Hein-Chris. And committing to it every single week, knowing full well how difficult he found it, was likely the biggest challenge I have had to face as a mommy.
Indeed, the first twelve months involved Kerry and I on the floor of the therapy room, Hein-Chris curled up behind my back, and every imaginable attempt to coax him into at least looking at the games and equipment Kerry would have on display. There would be glimmers of interest, but Hein-Chris was dictated by intense fear by no fault of his own.
Once again Sensory Processing Disorder (SPD) dug its hooks deep into my child’s psyche.
Week after week I sat there, watching, learning, my heart breaking as my child revealed just how seriously SPD had saturated every aspect of his existence. It was only really during these sessions that the scale of it was clearly visible.
It took a year for Kerry to fully gain Hein-Chris’ trust. It was only then that she would start the actual process of sensory integration in a meaningful way.
Swinging was a large part of the decided intervention. Hein-Chris could not tolerate swinging at all. In our case, Hein-Chris’ vestibular system was hugely compromised and extremely immature. It took almost two years to get him used to the variety of swings used during occupational therapy - swings that posed a huge challenge to his vestibular system. We found, however, that once his vestibular system matured and the anxiety associated with movement subsided, all his other senses followed suite, and sensory defensiveness started a slow, universal decline. Tactile defensiveness (touch), auditory sensitivities (ears), fear of unfamiliar places and situations, and sensitivity to light and smells (eyes and nose), all seemed to improve markedly. My child’s vestibular system was the portal to the rest of his senses.
Help your child’s OT, in whichever manner, to get that vestibular system working properly. If the OT recommends a home-based programme in conjunction with weekly or bi-weekly occupational therapy sessions, make sure to follow it religiously.
Once Hein-Chris tolerated short stints of swinging at a time, it was decided that I would no longer sit inside the therapy room, and Kerry created the first social story I had ever come across. She made a lovely, 5-page booklet with photos of her rooms and all the fun activities therein, and I was tasked with reading this to Hein-Chris as often as possible. Within about six weeks, Hein-Chris allowed me to wait outside in the reception area while he attended his session.
I can still remember relishing the divine coaches I could relax in after so many, many months of sitting on the floor until my back broke and I was aching all over.
It was around that time that Hein-Chris started twice-weekly sessions with Kerry. Every Tuesday. Every Thursday. Remember that Hein-Chris was at nursery school, so I would fetch him just before 10am, race to Kerry’s, sit and wait for 45 minutes, race back to nursery school at 11am, and then again at 12pm to collect him. All this for three and a half years.
Hein-Chris was making progress slowly but surely. Of course, the results were not earth shattering by any stretch of the imagination (at first), but we celebrated when Hein-Chris took a first try on the trapeze swing and crashed onto a soft pillow. That was huge. And the first time he touched saving cream. And the first time he swung on the boat swing for more than three seconds. And the first time he twirled on the froggy swing. And the fist time he put an entire hand into a bowl of water beads. Seemingly small, small victories were indeed major accomplishments. All this would take two and a half years to accomplish. Hein-Chris was a star, and we were extremely proud.
I would say I started seeing huge improvements by the time Hein-Chris was going on to five. It was as though all the years of occupational therapy clicked, and a little boy emerged who no longer cringed at every sensation. He was literally making progress during sessions every week. Kerry had cracked the code, and she had enticed Hein-Chris out from under the weight of SPD.
Occupational therapy is hands down the most effective treatment for SPD - provided the OT is trained and experienced in the field of sensory integration. From my experience, occupational therapy is not a quick fix. The magic of occupational therapy happens gradually over many years (if your child has severe SPD like mine), but once it takes effect, the results are astounding.
We were close to calling it quits a vast number of times. But Hein-Chris’ neurodevelopmental paediatrician was (frustratingly) adamant that Hein-Chris was not to miss a single occupational therapy session. And it paid off. Hein-Chris journeyed a world away from his infant self, and I am convinced that occupational therapy played the most important role in his transformation.
A year ago, Hein-Chris transferred to a school that allows visiting OTs. He attends all his sessions during school hours now. I became free of weekly trips to the treatment centre. After three and a half years I found myself in a space where my entire week did not revolve around trips to the OT and waiting my life away in the reception area.
Hein-Chris cannot remember all of this. He thinks occupational therapy is the best thing since Lego City’s 60104 Airport Passenger Terminal. I haven’t checked with Kerry, but I am sure both of us would do it all over again given the choice. Our boy has blossomed. And he loves swinging. Our work is done.
Here is the truth. It was all dreadfully fake.
I proceeded to slump down in a pathetic ball on the living room carpet. I was exhausted. Spent. Left completely drained by the holidays. Gone were the smiles and the happiness from earlier. There was not a single thought in my head. I was done.
And then it hit me. I loved school. I truly did. “Readin’ and 'riting and ‘rithmetic, taught to the tune of the hick'ry stick.” Chalk boards, crayons, scissors, paints, songs, dancing, jungle gyms - all working together to keep my boys occupied without me being involved in any way, shape or form. It quite literally was bliss.
I flashed back to the day - around the time Hein-Chris turned two - that our neurodevelopmental paediatrician warned Hein-Chris might never be able to attend a mainstream school. True to form I visited the few schools nearby that offered special needs education, and dug deep into research about home schooling and how best to prepare for being mommy and teacher to my eldest. I was ready, boy. Completely energized. Completely committed.
I was still very much enforcing my “keep outings short, but frequent” policy at the time, and attending Toptots, ClamberClub and what not on a weekly basis, but realized that Hein-Chris needed more exposure to the world. Much more. I sensed I had to push his boundaries even further - no delaying.
I cannot imagine where the motivation came from, but I decided to enroll him in a nursery school right after his second birthday, and around the time he was first diagnosed with SPD. It must sound crazy, but I believed my child needed to get out of the house every morning, and go somewhere he could watch and engage neurotypical kids. And be far, far away from Mommy and her constant reassuring presence. I just felt it in my gut. There was no mistaking it.
Going from being a staunch believer in the benefit of keeping your child with you at home for as long as possible, to trawling Ballito for a suitable nursery school, was an unbelievable mind shift. I wanted to resist, but was being egged along by an absolute belief that Hein-Chris desperately needed this. I literally felt that if I missed the boat, that would be it. He would remain curled up at home, unable to engage with the world without being paralyzed by anxiety.
I must have visited every nursery school in the Ballito area, settling on Little Turtles Nursery School after a dear friend recommended I take a look. As I walked in, I realized that it was ideal for Hein-Chris. You just know, right?
I discussed my decision with Hein-Chris’ neurodevelopmental paediatrician, and she asked for photos of the school, and a little questionnaire to be completed.
After much deliberation, Little Turtles Nursery School it would be.
I braced myself for the worst.
Day One was a nightmare. By ten I was called to fetch Hein-Chris.
Day Two was a smidgen better. I received no calls. But every day for the next six weeks would be torture for all involved. Hein-Chris would scream blue murder at drop-off every single day, but my resolve remained strong and I adhered strictly to a “drop-and-go” policy. I simply deposited him into Zandi's arms (Zandi is a caregiver at Little Turtles Nursery School), told him I loved him and would be back after story time, and vacated with stealth. No returning for a quick last hug. No looking back. No waving. Just a fierce conviction that this was the best for Hein-Chris.
By the end of Week Seven, Hein-Chris was quietly watching his classmates - all ten of them - getting on with it. He wasn’t partaking much, but was certainly observing and learning. Granted, he did spend six weeks plastered to Zandi’s hip (bless her), but my boy was at school from eight to twelve daily - Monday to Friday.
I could not believe my eyes. The impossible had been achieved.
The chosen nursery school offered the following:
Little Turtles offered a great balance between mental and physical stimulation, and Hein-Chris flourished. Take note that he started attending five days per week, right off the bat. I was advised that he would transition much easier if he knew exactly what to expect every day of the week. A three-day school week (either Monday, Wednesday, and Friday, or three consecutive days per week) would cause confusion in the mind of my darling boy who needed strict daily schedules. It would make the whole ordeal even worse I was told. This proved to be great advice for Hein-Chris.
Looking back, I am not sure to which extent this early exposure to nursery school helped Hein-Chris transition into a mainstream school, but against all odds my son is attending such a school today, and Little Turtles Nursery School - from age two - may very well have been our saving grace.
Would I recommend to everyone to put their kids into a nursery school at two? No. Did it work for Hein-Chris? Yes. Would I consider home schooling if the need arose later? Of course. In a heartbeat. Is Hein-Chris coping at the moment? Yes. Absolutely yes. How big is his current class? Twenty-one six-year-olds.
I was still on my back when it came to me that I needed to commit these thoughts to paper. Bear witness to Hein-Chris’ story. Encourage other mommies to take the plunge, but only if they firmly believed that early exposure to school was best for their children with SPD.
Believe me, if you have any doubts whatsoever, it will not work. Spare yourself and your child the anguish. It is a gruelling affair that requires firm conviction.
I knew beyond a shadow of doubt that Hein-Chris needed to go to school.
To my mind, the longer I waited, the more difficult it would get. I remain certain that by the time he was three, introducing him to the schooling system would have been too late. His mind would have been closed to a change of that magnitude. The transition would have been twice as horrendous.
I had my coffee. It was cold. I am used to it though. I haven’t had a hot cup of coffee since 2013.
I washed my hair, put on my make-up, and prepared to fetch the boys from school. The afternoon was going to be rough. Something would break. Someone would get hurt. No-one would share a single thing, and constant fighting would be the order of the afternoon. There would most certainly be bruising and hair-pulling and mud.
By eight pm I was broken from exhaustion. All that kept me going was the knowledge that there would be school the next day. And the next day. And the next.
I am quite convinced this means I am a dreadful mommy, but for the time being, I truly do love school. I really do. I prepared for bed humming happy thoughts of school days past.
"…you were my queen in calico, I was your bashful barefoot beau, And you wrote on my slate, ‘I love you, Joe’, When we were a couple o' kids.”
"School Days" is a rather popular American song written by Will Cobb and composed by Gus Edwards in 1907 (this according to a variety of web searches). It tells of an old couple looking back with wistful nostalgia on their childhood in their early school years.
An accurate account of Tuesday, April 16th 2019
Hein-Chris has journeyed a world away from his infant self. He has worked very hard, every day, every week to be able to engage with a world that is filled with sight, sound, smell, touch, taste and movement. He is a warrior against Sensory Processing Disorder (SPD), and my role is to provide him with whatsoever reinforcement he needs.
While writing the intro was temporary tonic to my soul, it is not quite accurate - unfortunately.
Drop-off at school this morning was unequivocally disastrous. I came home, crawled into bed, and bawled my eyes out. Why does everything, literally everything, have to be a major issue with Hein-Chris? Can’t he relent for one single day? Just one day where I might be spared the emotional torment of dealing with SPD. Just one.
After six gruelling years, is that too much to ask?
Grade R pupils at Hein-Chris’ school are expected to walk to class unaccompanied. Every day, twenty confident little people bounce through the school’s front door, greet the principal, bound down the stairs, rush down the passage, and fly through their classroom door. The twenty-first child does none of this. His name is Hein-Chris. Hein-Chris enters the school clinging to Mommy, doesn’t greet the principal, fights his way down the stairs and through the passage, and silently enters his classroom, Mommy in tow. The only Mommy. It’s lonely to say the very least.
I tolerated this for the first term, but during school holidays I discussed with Hein-Chris that I would still accompany him all the way to his class, but that he would need to take the last three steps, from the outside corner of the classroom to its door, on his own. It is not fair to his friends that his Mommy gets to enter the classroom door.
This was discussed and re-discussed all holiday long. Our plan was solid. There would be no glitches. I had it covered.
How was this possible?
Three steps. Really?
I do realize I should have compiled a social story. Taken a photo of the car park, the entrance to the school, the principal, the stairs, the passage, the corner of the building, the classroom door, and one of me with a big thumbs-up. I should have pasted all these to A4 pages, and written sentences below like “This is where Mommy parks every morning”, “This is our lovely principal, remember to say hello”. “These are the save stairs and passage we walk down every morning”, “These are the three steps you have to take on your own to your classroom door while Mommy watches”, “Mommy will be so proud of Hein-Chris when he can walk three steps to his classroom alone”. I should have had each page laminated and bound into a little book. I should have read it to him twice daily for the past month. That is what I should have done.
As it turns out, that is what I didn’t do.
I never imagined it would be necessary. I cannot fathom that all this is needed to convince a six-year-old to take three steps. Three steps without Mommy, with Mommy watching. Am I asking too much? Is this supposed to be such an incredibly draining ordeal?
But it is. It is SPD in full swing, making life a living hell. Hein-Chris is clinging to me for dear life, tears streaming down his face, screaming for me not to leave, begging me to walk him to the door. Three steps.
I wait for Hein-Chris after school. He comes skipping out, huge smile on his face. He had a lovely day.
I listen to all his stories as we head home. He jumps out and races through the front door, screaming excitedly.
I follow. One, two, three steps and I’m home.
It is safe to say that Hein-Chris is not a natural party-goer by any stretch of the imagination. The sensory overload that is typical of kiddies’ birthday parties is way too much for my darling boy, and I can spot the tell-tale signs of a subsequent total sensory malfunction a mile away, barreling down on me like the steam train to Tsitsikamma.
Needless to say I am not a fan of kiddies’ parties. In fact, scenes from parties past will haunt me until my dying day. While I am being a little over-dramatic here, I need other mommies to understand the greatness of the disastrous collapse inside a child with SPD attending a party, in stark contrast with the enjoyment experienced by the neurotypical child. There is quite literally nothing a kiddies’ party can offer that will not present as immediate and eminent danger to the child with SPD, irrespective of whether Mommy is hosting the party, or has kindly accepted an invitation from an unsuspecting other mommy.
The first three years after Hein-Chris was born were certainly the worst when it came to bracing for the impact of kiddies’ parties. Strangely enough I reckon the worst of the lot were his own first, second and third birthday parties. It would take hours preparing snack buckets, wrapping party favours, and ordering every conceivable, theme-appropriate decoration from PartyNet, only to have Hein-Chris crumble into a screaming ball as guests arrived. Yes, there were smidgens of enjoyment here and there, but for the vast majority of these parties Hein-Chris would be hiding in his room, steadfastly refusing to leave this darkened space. I would watch, in utter disbelief, as invited kiddie guests would have the time of their lives while my darling boy would have none of it.
While it broke my heart to learn my son had SPD right after his second birthday, it did make dealing with his fear of parties several metric tons easier. At least I had an inkling of what I was dealing with and could prepare myself mentally for the inevitable.
While there are not many photos of him, he gets all excited about the décor, and the birthday cake, and which friends attended, and whether Oupa and Ouma were there. In an unbelievable way I get to see the enjoyment I so wished to see in him on the day, today. I am relieved that I never had to explain to him that he did not have proper birthday parties at that age. Via the photobooks, he has been able to generate his own memories of these parties, and to his mind, they were great. He will light up talking about the cupcakes at his Mickey Mouse party, or the Barney t-shirts him and I wore at his second.
I would like to add a note on attending those other mommies’ parties. These too quickly became the bane of my existence. Having run the gauntlet, I made peace with the fact that kiddies’ parties happen, and Hein-Chris had to be exposed to each. I recognized that these were in fact a brilliant exercise in sensory integration for Hein-Chris.
During the party, as soon as I noticed that steam train hurtling my way, I would leave almost instantaneously with a polite “goodbye and thank you” (and a sincere thank you note to the hostess the next day).
I tried not to exit with remarks about the difficulties of raising a child with SPD or rolling my eyes to demonstrate my exasperation. Kids pick up these cues in a heartbeat, and it sets you up for an even worse experience next time. The same applied with regards to offering a busload of apologies. I didn’t. I remained polite and as gracious as I could holding a child in the throes of a raging fit, then waved, smiled and exited as quickly as humanly possible.
All this, only to face the same music the next time the phone beeps, and WhatsApp cruelly announces that I have been added to a group with a merry old party icon. Yay (no exclamation mark required whatsoever).
I never relented though, always hoping that the next time would be better. And it was - gradually. Hein-Chris (very) slowly learnt that parties were not as scary as they seemed.
Today we still accept all birthday invitations, and it is only in the last 6 to 8 months that Hein-Chris looks forward to, and enjoys, the parties. I still have to attended the party with him and leave when he starts getting over-whelmed, but it’s a journey, and Hein-Chris and I are committed to the ride.
And thus shall be the title of the children’s book I might write one day, in the form of a social story. It will help prepare kids for their first visit to the kinesiologist and be filled with lovely illustrations (by an illustrator with a flair for colour) and an easy-to-read font. It’s fun going to the kinesiologist, right? Right.
Hein-Chris has been attending educational kinesiology sessions for approximately eighteen months. He started as a result of my concerns regarding his severely low emotional and social intelligence which impacted his ability to self-regulate and had a detrimental effect on his self-esteem.
While Occupational Therapy is essential in the treatment of SPD, kinesiology offers a more holistic approach in treating body - and brain (especially emotion) - via the combination of an array of interventions including (but not limited to) cognitive behavioural therapy (such as play therapy), colour therapy, brain gym, and vision gym.
While IQ (intelligence quotient) in its traditional sense i.e., how intelligent you are, is certainly novel, emotional intelligence (EQ) far outranks it when is comes to happiness, success and self-appreciation now, and later in life. To my mind, EQ should be cultivated from a very early age. We tend to send our children for extra maths, science, and language lessons, but fail to address their need for exercising self-love, self-respect and healthy social integration (i.e., being able to kindly but firmly engage with their peers, their superiors, and those that look up to them, in a manner that does not offend or self-degradate).
In my experience (and this will be different for everyone), I consider educational kinesiology of great value when it comes to developing EQ. EQ comes about when a child is able to engage the left and right brain simultaneously when confronted by life and its challenges. This all plays into self-confidence and good self-esteem, both of which I consider of utmost importance, as the child with SPD (sensory defensiveness) grows. The child with SPD is typically prone to weak self-esteem due to his/her unique physiological and neurological design, and it is precisely this neurological design - if you will - that can be addressed and corrected by educational kinesiology.
Hein-Chris’ very own educational kinesiologist, Nasreen Khan, was featured in “Get It Ballito - Umhlanga” recently. She explained that educational kinesiology is basically the process of teaching the left brain and the right brain to work together at the same time. She added: “Some people are left brain dominant and others are right brain dominant. If you are more dominant on your ride side, for example, you may struggle with logical rational thought”. I attach the article, “Brain Games”, for your perusal.
Source: Get It Ballito - Umhlanga, April 2019, “BRAIN GAMES”, Text: Leah Shone (firstname.lastname@example.org), Photographer: Samantha Basson (email@example.com), Page 16 and 17.
My focus in writing this blog post was of course my own child’s challenges, but there are clearly a wide range of childhood concerns that Nasreen deals with daily. In this vein I would highly recommend Nasreen. My child’s self-esteem and self-confidence have sky-rocketed in the last eighteen months. There remains work to be done in terms of developing his EQ, but we are getting there one “Q” at a time.
How to get in touch with Nasreen:
Contact her on 082 923 1714 or send an email to firstname.lastname@example.org. She is such a lovely lady and adores the kids she councils. It’s amazing to watch.
I never intended to blog about eating insofar as it pertains to infants/children with SPD. From all the information I have been able to glean over the last six odd years, there does not appear to exist a one-size-fits-all when it comes to getting those darling sprouts eating. It's literally every mommy for herself.
However, it is one of the top concerns parents have along with (1) getting the correct diagnoses, (2) getting the infant/child to sleep (nightmare!), (3) potty training and (4) aggressive and other anti-social behaviour. I would go so far to say that questions relating to these five topics find their way onto SPD Support Pages every single day - no exceptions.
But I digress.
I realized that I had to broach the issue of eating in the context of SPD even if just to confirm that it is an intolerable ordeal for any parent. While you might be able to convince/bribe/force/coax an neurotypical infant/child to eat a variety of foods, the infant/child with SPD will not be swayed. In most cases they simply cannot tolerate the smell, taste and texture of the food, making it physically impossible to consume. It is not an act, and parents with neurotypical infants/children will not get it. I don’t blame them. I can hardly understand it myself, but it is a stark reality in the life of an infant/child with SPD.
While there is nothing quite as satisfying a tucking a well-nourished child to bed at night, parents dealing with SPD seldom - if ever - get to experience this pleasure. I am gutted to admit that I cannot offer a shred of advice that will magically change this state of affairs.
Here is my experience with Hein-Chris.
I will add that if Hein-Chris was over- or under-weight, I’d take him to visit his paediatrician without delay. The same course of action would apply if Hein-Chris (1) was tired and lethargic during the day while his peers were bouncing off the walls, (2) developed dark circles under his eyes, (3) had any difficulty whatsoever with bowel movements, (4) has not expanded his food choices in the next two to three years.
And that’s that. The blog with no advice. Nice.
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.