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. ​

​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.)  

​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.

• Keep outings short, but frequent. You may very well spend more time planning and packing for the outing, than you spend enjoying (rather surviving) the outing. You will have to watch your infant/child closely during the outing. Once you notice your infant/child heading for a panic attack or meltdown, you need to vacate immediately. Return home or to any other space your infant/child feels safe. Outings I would highly recommend are (1) weekly mommy-and-baby classes such as TopTots, ClamberClub, Kindermusik, and BabyGym, (2) frequent visits to a farm-type facility where your infant/child gets to see, and interact with, animals (in Ballito we are blessed to have Flag Animal Farm close by), (3) regular short trips to the mall with its flashing lights, harsh sounds and smells, and crowds (go on your own - only you and your child - and don’t have a ten-page shopping list on you), (4) regular visits to Spur, Mike’s Kitchen, Wimpy, Panarotti’s, and John Dory’s - basically any restaurant that is child-friendly (this is a huge stretch for your infant/child so order as you walk in and ask them to warn you if any loud music or clapping is going to happen suddenly - our local Spur puts its radio off whenever we dine there and warn us well in advance if they will be singing the birthday song (Hein-Chris has a fear of this particular song to this day)), and (5) kiddies’ parties. Anxiety associated with outings will start to dwindle as your darling child builds tolerance to these different venues and events.  

• Social stories work miracles. What is a social story? It is a short, five to ten-page story introducing a new event/experience/situation to your child. The social stories I prepare for Hein-Chris always take the same form (I learnt from his OT): Five to ten A4 pages with different photos stuck to the top of each page, and a sentence at the bottom explaining the photo. For instance, if Hein-Chris changed schools, there’d be a photo of the school building, another of the playground, and others of the principal, the teacher, and the new classroom door. I might have included a photo of me, standing in front of the new classroom door, giving a big thumbs up. Under each photo I add a different sentence. “This is Hein-Chris’ new school. It is called Umhlali Prep”. “Hein-Chris has a lovely new teacher called Mrs Wilson”. “Mommy will fetch Hein-Chris everyday right after story time”. I typically laminate each page and have the little book ring-bound. Hein-Chris and I read the book twice daily for as long as necessary. Similar books can be made for visits to the dentist or hairdresser, learning to go to Occupational Therapy without Mommy present, and how to behave in a restaurant. It’s quite embarrassing asking strangers (new schools, new teachers) whether you may take their photo, and photos of their premises, but most people oblige without hesitation and seem happy to help.

• Daily routines. There is little that soothes Hein-Chris more than sticking to a basic routine. However, I never allow the routine to become so rigid that Hein-Chris is unwilling to accept planned changes to the routine. I tell him, every night, exactly what he can expect in terms of his routine for the next day - the things we typically do every day as well as a variety of variations to the routine (i.e., stopping at a restaurant for lunch after school, having a friend over for a playdate, visiting Exclusive Books and reading from their selection of kiddies’ favourite books, going to the beach for a swim, etc.). No two weeks ever look the same, but Hein-Chris feels as though he has total control since he knows precisely what is coming. Because he is so visual, the plan for the day has to be written or drawn on a calendar - or stuck onto his “Lifeboard”. Our particular “Lifeboard” is a weekly planner to which we stick small, magnetic blocks, each denoting a different activity in picture form i.e., getting dressed, brushing teeth, going to school, arriving home, going to swimming, bath time, etc. Find out more at https://www.facebook.com/Lifeboardsbyiva/. Hein-Chris’ anxieties have reduced significantly since I’ve introduced the “Lifeboard” (and calendar which he fills in himself), and he will look at both a couple times throughout the day to make sure we are still on schedule.

• Eddie the Teddy. We were cautiously grateful that Hein-Chris formed an attachment to a big, grey bear I bought at Edgars before he was born. Eddie was a lifesaver when we had to travel (take planes and sleep in guest houses), and when Hein-Chris changed schools (Eddie attended “Little Turtles Nursery School” and “Ocean Kids Pre-Primary” for some weeks). Eddie also joined Hein-Chris for his first term or two of Occupational Therapy and partook with such gusto (with a little help from the OT) that he inspired Hein-Chris to do the same. To this day, Eddie is a comforting presence in our home.

• Swimming. Hein-Chris started swimming lessons at a very early age (well before he turned one). The first four years of trying to get my precious boy used to the water, was a hellish ordeal. He screamed and had violent tantrums on many occasions. We would evacuate as soon as possible, but we would be back next week to face the same music. Many lessons consisted of Hein-Chris and I sitting on the side of the pool, watching our mates have a lovely time. The instructor allowed me to take her picture, pictures of the pool, and of the floating toys, and I created a Social Story for Hein-Chris. I also took short clips of the swimming lessons and played these for Hein-Chris to watch for what feels like a million times. In the last two years, Hein-Chris has blossomed into a confident swimmer who thoroughly enjoys water, and I find it to be a brilliant anxiety reducer for him. Once he is older, he will start more formal swimming lessons as these will hugely benefit his muscle tone, his core strength, and self-confidence - not to mention the therapeutic value of being submerged in water.

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.

• Occupational Therapy: Your most important ally - as far as anxiety reduction goes - is your child’s Occupational Therapist (OT), who must be well-trained and particularly experienced in Sensory Integration (SI). Occupational Therapy is hands down the most effective treatment for SPD - especially if your infant/child is diagnosed at an early age. It took many months for Hein-Chris’ OT to gain his trust and get him to respond to her instructions. I was close to calling it quits many times. But Hein-Chris’ neurodevelopmental paediatrician was (frustratingly) adamant that Hein-Chris was not to miss a single Occupational Therapy session. And it has paid off. Hein-Chris has journeyed a world away from his infant self, and I am convinced that Occupational Therapy played the most important role in his transformation. In South Africa, the typical cost of an Occupational Therapy session is roughly ZAR550 (about US$39) per 45-minute session. Our medical aid covered half of these costs. Hein-Chris has been attending sessions since the age of two and will continue doing so until age seven or eight; this according to our neurodevelopmental paediatrician.  

• Brushing: Speak to your OT about brushing your child. While brushing is indicated for the treatment of tactile defensiveness, I found that brushing is incredibly effective at treating SPD overall. I prefer the Willbarger Therapressure Brush available in South Africa at https://sensorystuff.co.za/therapy-corner/brushes for ZAR120, or at www.amazon.com for roughly US$11 for a bag of 2. Hein-Chris’ OT showed me precisely how the brush was to be used. You always start by asking the child’s permission to brush him/her. At first, Hein-Chris could tolerate only a single brush stroke, per arm, three times per day. He behaved as though I was brushing him with a hot iron. I persevered many weeks, many months. Today Hein-Chris allows me to brush his arms, legs, and back for fairly long periods of time. I use this to our advantage by brushing him before and/or after kiddies’ birthday parties, and other similarly stressful outings; and whenever he is particularly anxious i.e., he starts a new school, his dad goes away for work, he hurts himself.

• Baby bottles: Sucking a dummy or baby bottle is extremely relaxing to the infant/child with SPD. While I weaned Hein-Chris off his dummy at age three (due to the affect it may have on his teeth and speech), I still offer him a baby bottle (usually filled with fresh milk or water; definitely no juice) when he becomes particularly anxious (and he is six now). It calms him right down - almost instantaneously. Were it not for this blog, this is a secret I would have taken to the grave. I can literally feel other mommies judging me. But if you were here, saw Hein-Chris in a blind panic, and experienced the instant relief from a baby bottle, you’d be right in my court.

• Weighted blankets: These are another great tool for relieving the stresses of the day, The blankets offer deep, relaxing pressure. When Hein-Chris was smaller, I used to wait until he was asleep before putting the blanket over his legs, and - later - over his whole body (not his head). He could not tolerate the blanket while he was awake, but introducing it in his sleep, worked for us, and today Hein-Chris enjoys covering himself with the very same weighted blanket at bedtime. In fact, when he arrives home after a trying day at school or a stressful outing, there is no better combination then a baby bottle of fresh milk and the weighted blanket over his legs. I ordered Hein-Chris’ weighted blanket from www.weightedblankets.co.za for around ZAR1125 (roughly US$80), three years ago, and it was money well spent. 

​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.