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.
The infant/child with SPD should never be Iron, Vitamin B, or Magnesium deficient.
Having said all this, you would typically need to have a blood test done to determine Iron, Vitamin B or Magnesium levels in the body. I was unfortunate in that I could never expose Hein-Chris to the trauma of drawing blood. He simply did not (and still does not) have the emotional and physical resources to cope with the pain and fear. It would only reinforce his belief that everything on earth is dangerous.
I had to guess he might be suffering Iron, Vitamin B and Magnesium deficiencies based on what I saw him eat. The infant/child with SPD will often not tolerate a balanced diet. While you might be able to convince/bribe/force/coax an infant/child without SPD to eat a variety of foods (healthy foods children typically don’t like), 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 infants/children without SPD 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. Make peace with it.
My strategy was to:
I never discussed this strategy with Hein-Chris’ paediatrician. My decision to use supplements was based on my own research and instinct - and the dosages were such that there was no risk to Hein-Chris. However, talk to your paediatrician about these supplements before administering them - especially if your infant/child is taking medication of any kind.
As per my first blog post, your Team of Experts has diagnosed your child with SPD. After blog post two, his/her treatment plan is now in place. For the time being, you visit the occupational therapist (OT) once a week.
While you are relieved that you now know your child has SPD, he/she is just as difficult to manage as before the diagnosis. The meltdowns, the outbursts and the constant crying are unrelenting. You remain in a state of chronic fatigue, and spend every moment your precious sprout is sleeping, trawling the internet for advice and support.
The very last thing you want to consider, is leaving the confines of your home and go anywhere other than the OT’s rooms (and only because you know you absolutely have to).
I found myself in this exact state a little more than four years ago. I had two choices: (1) stay home, draw the curtains, and do whatsoever kept Hein-Chris calm and anxiety-free; or (2) force him out the front door - kicking and screaming - and spend as much time as possible doing normal, age-appropriate activities like other mommies were doing. I opted for the latter, as I somehow instinctively knew that keeping him safely ensconced in a darkened room might provide short-term relief, but that this, in the long-run, would be detrimental to his development.
Taking Hein-Chris out of the house was a huge production. I needed two fully packed bags of clothes and wet wipes. He would scream to the point that he’d vomit all over himself, multiple times, during every outing. However, I did not let this deter me from taking him to every mommy-and-baby class in town - kicking and screaming. We visited the mall, the park, any local restaurant that could stand us, the animal farm, and the beach - kicking and screaming (I don’t mention kiddies’ parties as you don’t want to get me started on those; they are not for the faint-hearted). At first, Hein-Chris screamed and cried and vomited all over the place until we would leave after five minutes. Then 10 minutes. Then 15 minutes. Later he’d scream and cry and vomit, and then settle - at long last - for five minutes of not screaming and crying and vomiting. He’d take in his surroundings and watch what others were doing. Tomorrow we’d do the same. And the next day. And the next. And the next. For years.
Five minutes turned to six, then seven, and later thirty minutes. Today I can take Hein-Chris almost anywhere of my choosing - mostly. However, we have to do these outings regularly. If we skip a single week without going somewhere other than school or home, Hein-Chris will get really anxious when next we try to go anywhere.
I truly believe that the infant/child with SPD needs to be exposed to the sights, sounds, smells, and uncertainties the world has to offer, from as early an age as possible. It is tough taking a two-year-old child with SPD to an unfamiliar place filled with harsh smells and loud noises. Now imagine trying this with a four-year-old child with SPD whose been sitting in a darkened room for the last two years. I shudder. Based on my own experience, the infant/child with SPD needs to start being desensitised to the world immediately in order to have a fighting chance of surviving it as an adult.
Today I am grateful I never waivered in exposing Hein-Chris to the outside world - despite his best efforts to make it almost impossible. He has slowly been getting used to the world since he’s been eight weeks old (before I knew he had SPD), and that has certainly given him a solid start to learning how to cope with SPD.
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 SPD, and my role is to provide him with whatever reinforcement he needs, even if he resists at first - kicking and screaming.
You have seen the paediatrician, the neurodevelopmental paediatrician, and at least an occupational therapist (OT), and all agree your child has sensory processing disorder (SPD).
The next step is to discuss an appropriate treatment plan with your child’s paediatrician. Keep the neurodevelopmental paediatrician’s report handy as it will probably contain a list of suggested interventions. Most likely your child’s paediatrician (and your child’s neurodevelopmental paediatrician) will recommend visits to an OT - likely the same OT that helped diagnose your child as he/she was recommended by your child’s paediatrician in the first instance.
Ask your paediatrician to phone the OT to inform him/her of your decision to place your precious sprout under their care. This makes the OT accountable to you, as well as your child’s paediatrician and I found that this cements the close relationship you need to foster amongst your Team of Experts.
Occupational Therapy is hands down the most effective treatment for SPD (provided the OT is trained and experienced in the field of Sensory Integration (SI)). Your OT will advise you on the frequency and length of your visits based on your child’s unique requirements. I write “unique requirements”, because apart from their need for sensory integration, children with SPD tend to have low muscle tone and weak cores. These are also treated during Occupational Therapy sessions.
Hein-Chris started with weekly, 45-minute sessions for the first year and a half of Occupational Therapy straight after his diagnoses, 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 years.
Occupational Therapy is certainly not a quick fix. The magic of Occupational Therapy happens gradually over many years, but once it takes effect, the results are astounding. In our case - for instance - Hein-Chris’ vestibular system (associated with movement) was hugely compromised and extremely immature. It took almost two years to get him used to the OT’s swings - swings that posed a huge challenge to his vestibular system. I 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 conclusion is: Your child’s vestibular system is the portal to the rest of his/her senses. Help your child’s OT, in whichsoever 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.
Apart from Occupational Therapy, discuss Educational Kinesiology and possibly also Play Therapy facilitated by a clinal psychologist, with your child’s paediatrician. Chances are he/she will ask you to wait a few months, even years, before calling on these professionals. It is likely your paediatrician wants to see how your child responds to Occupational Therapy before introducing other forms of intervention. This is quite reasonable. If you feel strongly that your child needs more than Occupational Therapy, voice this and I am confident your paediatrician will be open-minded enough to listen to your argument and assist you as best he/she can to identify the right professionals to treat your child.
In Hein-Chris’ case, he started weekly kinesiology sessions two years after starting OT and Play Therapy sessions (facilitated by two clinical psychologists) the next. Currently he visits his OT, his kinesiologist and his psychologists once weekly.
Clearly your child’s Team of Experts will play a significant role in his/her life for anything from two to five (even more in certain cases) years after being diagnosed. Keeping your Team of Experts (with your trusted paediatrician at the core) well-informed about your child’s progress is crucial, and entirely your responsibility. You need to circulate (via email most likely) all quarterly/annual evaluation reports, progress reports, school reports, etc. among the entire team. You will - for instance - send your quarterly OT progress report to your child’s paediatrician, neurodevelopmental paediatrician, educational kinesiologist, and whomever else is involved in your child’s treatment/therapy (i.e., speech therapist, psychologist, physiotherapist, etc.) depending on his/her needs.
You will probably visit your paediatrician and neurodevelopmental paediatrician at least once a year to discuss your child’s progress and ensure your child’s treatment plan remains relevant given his/her progress (or maybe lack thereof) over the past year. In Hein-Chris’ case we visited his neurodevelopmental paediatrician twice a year, and his paediatrician as and when we deemed it necessary.
Get a diagnosis as early as possible as treatment needs to start from a very young age.
Follow these steps: