Tag Archives: Aspergers

The gambit of therapies

These days it is fairly common for children to receive vast amounts of therapy. The inability to compete academically, socially or physically can sometimes be resolved with therapy. It is therapy that can often close the gap between a child’s abilities and inabilities. In younger children, problems are often treated too hastily. If left alone many problems may resolve themselves, but there are also cases where a more serious problem may develop. Because there is sometimes a small window of opportunity to correct certain problems, many parents are just not prepared to take a risk and immediately resort to therapy for their kids. This is a typical situation for neuro-typical children, so imagine then the therapy needs of a special needs child. When there is so much more at risk and so much more to address, missing the window of opportunity is loaded with even more consequences.

My autistic spectrum son does all the mainstream and common therapies. Fortunately the bulk of them are during school hours – speech twice a week, occupational therapy twice a week and physiotherapy once a week. In the afternoons, he also does remedial therapy, play therapy and behavioural therapy. We have done ABA (applied behavioural analysis) therapy in the past. Over and above his special needs schooling, this equates to an additional 8 therapy sessions a week.

This makes me wonder if my son receives too much therapy – is he “over-therapised”. Research supports that children with Autistic Spectrum Disorder (ASD) who have 20-40 hours of therapy or interventions per week, have a higher probability of improving their condition and symptoms. Some even go on to speculate that early and intense intervention can “cure” autism. I personally do not know what I believe when it comes to autism being curable. I believe children can learn many coping strategies and behavioural techniques, such that with maturity, they may no longer present as ASD. Perhaps a more appropriate term used is that autism is “recoverable”. This may appear to be semantics but I quote below casework and research conducted by Dr. Rimland to highlight the difference. Dr. Rimland is an American research psychologist, writer, lecturer, and advocate for autistic children, ADHD, learning disabilities, and mental retardation. Dr. Rimland was the founder and director of the Autism Research Institute (ARI) and founder of the Autism Society of America (ASA). Rimland was long an internationally recognised authority on autism spectrum disorders and was the father of a high-functioning autistic son.

“Dr. Rimland did not want to use the word “cured” to describe these children. Instead, he preferred the more appropriate term “recovered.” He liked the analogy offered by Stan Kurtz, director of the Children’s Corner Schools in Van Nuys, California, and a supporter of ARI and evidence-based medical approach, to illustrate what recovery means: ‘Assume that a person is hit by a car. His legs are broken, and he suffers brain damage. At this point, he is considered disabled. Now let’s say after intense rehabilitation, he is able to walk again with a slight limp and has some remaining neurological issues but can live a normal life-or maybe he heals so well that you couldn’t tell he was in an accident at all. That’s recovery.’”

“The only difference between that and autism is that our children were somehow more susceptible to being hit by the car-and some of the shrapnel from the car quite often remains in their body. We need to help these kids get rid of that shrapnel-and keep them away from the street-in order to give them the best opportunity for recovery. Similarly, many children once diagnosed as autistic now exhibit only nuances of their former behaviours; for instance, some still have mild ‘stims,’ or an exaggerated focus on favourite topics. Despite lingering issues, recovered children will, in many cases, be able to live independently and happily, have productive careers, and enjoy rewarding relationships with others. They may not be ‘cured,’ but they are certainly recovered from the devastating symptoms that once blocked their path to a normal future.”

I personally struggle to believe that a condition that stems neurologically can be cured or reversed? When looking at years and years of research, two of the latest research studies I want to pick up on, highlight how complicated Autism can be and how it is a genetic condition that stems with neurological complications. (i.) The latest research from the Beth Israel Medical Centre, in conjunction with the Harvard Medical School, very simplistically have linked some cases of autism to a microscopic deletion or duplication in DNA. (ii.) Recent research (July 2011) scientists at the Weizmann institute have seen in sleeping autistic spectrum toddlers fMRI scans showing lowered levels of synchronisation between the left and right brain areas known to be involved in language and communication.
These two examples are only but a few that make it difficult for me to understand how autism could be curable unless the condition in the brain could be reversed. However I have read much literature that does advocate for the possibility of autism being cured. The Autism Revolution has many examples of children who have been cured. On the basis that autism is a recoverable or curable condition, therapies and interventions seem to be paramount in improving a child’s prognosis.

My son receives about 30 hours of intervention a week, including his schooling. This is still within reasonable realms. I also believe firmly in giving a my son the ability to be a child and to explore play, relax, be physically active, be bored and do all the things a child should do. He needs to have ample time every day to be a child.

There really are so many therapies for ASD children. There are the mainstream therapies (or conventional therapies) and then there are the alternative therapies and of course the more controversial therapies.

We have tried and are still continuing with some of these; speech, occupational therapy, sensory integration as part occupational therapy, play therapy, floor time approach, behavioural therapy, remedial therapy, essential fatty acids (yes this is a recognised therapy).

Some of these approaches such a floor time, ABA and sensory integration have become methodologies that we really try and implement daily at home. For example through brushing programs, weighted duvets, floor time play sessions, ABA is used daily in how we talk to him and rationalize with him. And of course good nutrition, vitamins and essential fatty acids are part of day-to-day living. We have also read success stories of other therapies and although we may not have actually done the therapy we have adopted a version at home to great success; for example visual schedules have worked really well for us when implementing new routines or going away on holiday. Social stories have also worked really well for new experiences and lowering anxieties.

All of the therapies above have made a difference in our son’s life. We have continued with the ones that we feel are essential or find sustainable. We have discontinued the ones we feel have served their purpose and we are constantly in exploration of others. We know in time we may have to revisit previously used therapies and will use some of the others mentioned below.
Visual schedules, PECS system, neurotherapy, Social story therapy, Casein free diet, Gluten free diet, Vitamin C therapy, Vitamin B6 and magnesium therapy, Auditory interventions, vision training, relationship development intervention, auditory processing are all therapies one can do. For us some are not suitable and others we would like to try in future.

It is a difficult decision to choose which therapies to do now, which to ignore and which to do later. There is only so much time in everyone’s lives. For us it is about what is available in South Africa, what is convenient and appropriate at our son’s stage of life as well as ours. What has benefit for him now and makes sense emotionally, physically and financially for all us. Whether or not therapies will work, we never know. To paraphrase Temple Grandin’s comments from her book, Thinking in Pictures – some therapies will work for some children and other therapies not. With this complex disorder you will only know once you try.

Autism is a complex brain disorder .We adore our son and want to give him the best possible life. This is only one of the reasons why we have intervened and why he receives 30 hours of intervention a week, excluding all the other things that are part of his daily life and routine. We hope that all of our endeavours and interventions will lead to him having, according to Dr Rimland’s research, a “normal future”.

I do want to caution parents about a few things with regards to therapy. Make sure you are using a reputable therapist that comes with references. There are “therapists” who have no qualifications or experience in special needs. When dealing with neurological based problems, trained professionals, or someone who has proven experience in the field, will be better equipped at making a difference. When it comes to alternative therapies (many of which I have not explored myself), make sure you are learned in them and they are not irresponsible therapies. There are treatments that are dangerous to children and there are sadly individuals who are looking to make a quick buck. You are entitled to a second (or third) opinion if you are not sure. A very simple example where something can go wrong is Vitamin B therapy – you need to be with a skilled physician who is obtaining optimal levels in your child’s body. I am not saying do not do Vitamin B6 therapy – it is something I hope to do one day – just make sure your child needs it and that the therapy is properly administered and monitored.

If you feel a therapy or even therapist is no longer making a difference in your child’s life or working for you, take a break. You may then see a change in behaviour that proved it was still valuable. Or you may realise your child has out grown that therapy or it is not longer helping. We become very comfortable in what we know as we do not like the change too much in our special needs kids lives (rightly so), but sometimes we reach a status quo that is a waste of time and energy and it is best to move on.

Lastly whether or not you believe autism is curable or recoverable, be aware of people who make false promises in this regard. If you believe the condition is either curable or recoverable, then stay realistic. To go back to Dr Kurtz’s example – there will be some people who will recover and learn to walk again and some who will not. The factors in this are many and variable. I think the same applies to Autism – some low functioning kids will learn to speak, and some high functioning kids will recover but of course there are the cases where this will not happen. Do not become all consumed and ruin your finances, marriage and family in pursuit of an unrealistic goal. Parents need to achieve the balance between faith in their child’s abilities and chances of recovery and being realistic. Parents are the child’s championing force but need to remain cautiously optimistic, and trust their guts. I do not know how and when to tell a parent it will not happen or it will happen. Of course they need to try, and of course at times they will disagree with their spouse/partner, and of course their child may be a miracle child. We know there are so many. But somehow they need to maintain perspective – we all discover in our own way, what this perceptive is and how we find it. Find your grounding force and keep it alive. For me it is the support structure I have set in place. I always have people who know my son that I can ask what is the likelihood this or that will happen and whether I am pushing too hard. Sometimes I even underestimate him and in this case they put me back on track. When there are times that something may not be achievable by him, I try as best as I can to mourn the loss and move on.

P.S. Please refer to Informative reads page for interesting articles and information relating to this post

Looking back on six years.

My son recently turned 6 – it was such a beautiful day of good behaviour, great fun and only doing what his heart desired. It really was his day! It all worked out so wonderfully and I tried not to over analyse the day but I did wonder how we could recreate this wonderful day, all the while knowing it is not feasible to only do what he wants on his terms all the time.

On the day I just went with the flow and really enjoyed his special day with him. That night I will admit to tears and immense sadness. Six is a big number for neuro-typical children – six year olds can typically do so much for themselves and normally want to be independent. But my six-year-old Autistic spectrum son is not nearly at this level. This makes my heart ache. He so often cannot do the small things, buttons or shoelaces. He still puts his pants on backwards and his shoes on the wrong feet. He also struggles with the big things like swimming, reading, writing or riding a bike.

For once I will not counter this with a “but” or with all the things he can do. I am realising it is okay to feel sad at times and feel the emotion. If you feel the emotion you can move it. This is a very new feeling for me. I do not normally sit well with being overly emotive; I pride myself on being strong. When you have a special needs child you need all you wits about you, all the time. Your child demands this. There is no time for self-deprecating behaviour and wallowing.

In looking back on my sons six years of life, maybe it is time to reveal a bit more about him and our path thus far.

I had a normal pregnancy with no complications; he was born at 39 weeks via elective Caesar. He was born at a good weight and all tests and results came back perfect. Yet he was a difficult baby, feeding was difficult to start, and at 6 weeks the reflux, colic and lactose intolerance went into overdrive. He would settle for 30 minutes at a time, and then we would start the feeding, winding and cramping cycle all over again. He also became over sensitised very easily. As a first child I knew he was difficult, but reasoned it was normal as you often hear of colicky difficult babies. Obviously in retrospect the signs were there early on. But there is no reason to say that colicky, difficult babies have anything but colic and gastro-intestinal upset.

He developed slowly – specifically his gross motor functions. His speech seemed on track and yet at 3½ years, with an assessment from a language therapist, we became aware of his delay in language development.

He was also a difficult toddler and at around 18 months, I had a suspicion he may be autistic. I did not however understand or have any knowledge about the Autistic spectrum. I believed that autism was coupled with symptoms such as rocking, head banging, lack of speech – similar to a “locked in syndrome”. I had no idea what it entailed or the full array of tendencies. Most people are ignorant about things that do not concern them, or those around them.

My suspicion about our son’s autism was based of the way he came apart when he threw a temper tantrum. I could never put it into words at the time, except that he became “unglued”, not through violence but he would be so sad and inconsolable. I recently learnt more about this tendency. Whether or not it is common in Autistic spectrum children, I do not know. In truth it is not something I have heard many parents comment about in their own special needs children, but maybe that is because compared to some of the other behaviours, it is not alarming. For me it was something I felt was uniquely different about him as a young toddler.

Annihilation anxiety is the most primal anxiety in infants – “the human infant in its helplessness, is saddled with a fear of its own annihilation.  The protest cry of the infant is designed to summon the caring ministrations necessary to restore a homeostatic state and to avoid any threat to its continued existence.” (1)

Annihilation experiences and anxieties are common in early childhood. They seem to manifest in the following ways; “fears of being overwhelmed, of merger, of disintegration, of impingement, of loss of needed support, of inability to cope, of concern over survival, and of responding with a catastrophic mentality.” (2)

My own description of this relating to my son as a young toddler and even today is that his becoming “unglued” is probably due to annihilation fear or anxiety. When he becomes so upset because he cannot have his own way or he is frustrated, he feels overwhelmed and helpless. Then the crying and helpless feelings overtake him, his behaviour is as if he may actually come apart. He is inconsolable and cannot hold himself together. The dark clouds of emotional anxiety overwhelm him. At times like this, I try to let him calm himself down; strategies to calm himself are of paramount importance. But sometimes the ultimate way  is to let him climb into my lap as I hold him like an infant, until he calms. Fortunately this is becoming less frequent but it still is the quickest and easiest way to restore that homeostatic state.

At 2½ years, he was still developing slowly and after a brief hospitalisation at age 3, we started play therapy, mostly to address his anxieties. He was such a unique child and presented so differently that the extremely experienced play therapist never considered autistic spectrum as a diagnosis. She did refer us to a psychiatrist for an assessment at around 3½ years of age. I had done some basic research and knew based on all the psychiatrist’s questions that she was investigating autism as a diagnosis. At this stage we were not given a firm diagnosis other than cognitive language delays and a therapy path was devised.

2 months before his 4th birthday a locum school principal requested a meeting to discuss our son’s progress. This resulted in her disclosing that she thought our son had special needs. When I begged her for her professional opinion as to what his problems could be, she confirmed my gut suspicion, with an Autistic Spectrum diagnosis. I was devastated even though I was not surprised. I found it extremely hard to accept. In truth to this day, I am still not convinced, but in my heart I know it is true!

It has since then been an arduous journey of discovery. We continually increase our understanding of his condition, which is constantly evolving. Obtaining a good network of experts and professionals we trust has also been a challenge. As a new year approaches and he starts at a new school, this will change and we are in a way back at the beginning, which is scary for us and of course for our son.

But in truth these are the easier parts. When it comes to assessing people, referrals can always be used, and trusting my gut is helpful. Seeing how they bond with my child is an important factor. It is also feels so easy because I have a path of action and a semblance of control.

It is the day-to-day things that are so hard. Understanding some of his behaviours and anxieties. What he can and cannot do, versus what he is not interested in doing. His sensory sensitivities are so hard to grasp, as is what is going on in his head. His sadness and at times depression, his anger and frustration, his bad moods, his anxieties – these leave us all perplexed.

The day-to-day planning is also so time consuming and draining. Holiday preparations, aeroplane trips, shopping malls, restaurants can all be exhausting at best. Parents of neuro-typical children take for granted the decision process they go through. Special needs parents have to think of all the eventualities, variables and permutations. If you do not think of them and have strategies for when the breakdown happens (because it will happen) it can be the difference between a scene and a mini catastrophe. We also need to research so many of our decisions for example sensible holiday destinations, as not all places are suitable. A further challenge is finding appropriate relaxed restaurants, parks and places for outings -what should be daily, easy decisions often need to be laboured over.

Of course there is a counter to all of this. He has the best smile and laugh. He is so loveable and confident even bullish at times. So clever, even if it is in an off the beat kind of way, and he surprises me all the time. At the end of everyday in the reflecting moments of happiness and sadness, my heart bursts with such overwhelming love for him. Even though I do wish he were not so hard and exasperating at times, I love him for all of him.

Looking back on 6 years, it has been hard and I know the next 6 will be tough too. Who can anticipate what the teenage years will bring. Finding parenting hard or exhausting, disliking aspects of our children and ourselves as parents, needing a break, desiring a different set of outcomes. Giving up on dreams for our children, and for ourselves, mourning the losses of the person you thought may be or what you hoped your children might achieve one day. Living with continuous uncertainty are thoughts we as parents never like to indulge and always counter with a positive. I can write these down and think them, but I am still learning to feel them. This does not make me a bad parent. In the long run, it is supposed to be part of my healing process in having a special needs child and lessen my anger and make me a better person and parent.

I am coming to terms with this sadness and it gets easier. I think that in the last six years, my growth has also been slow. I can only hope I grow and handle my son and his difficulties with aplomb and tackle my own personal demons with success. But as all parents do I wish and hope my son’s success is far superior to mine, not for my lack of trying but for the success of his.