The vast spectrum

My husband and I have battled to get an accurate diagnosis of our now nearly 6-year-old son. His initial diagnosis was PDD-NOS, we have had a fully Autistic diagnosis and we have had an Aspergers diagnosis. All we can confirm is that he has autistic tendencies and he is high functioning. He has co-morbid conditions as well; such as ADD, low tone, anxieties, dyspraxia, sensory integration problems and learning difficulties. The list is long but most special needs children have a primary diagnosis, with many co-morbid conditions associated to this diagnosis.

We have many times been bogged down in the pursuit of an accurate diagnosis for our son. The co-morbid conditions are easy to see, but the underlying primary diagnosis has had us and many professionals stymied. I think we get stuck as we assume if we can understand his condition intellectually, we can find better treatments and we will be able to understand our son and his difficulties better. With his difficulties come so many behaviours and symptoms that are constantly evolving. Some of these disappear with time and little intervention. Others evolve into normal behaviours and some become issues that need to be addressed. Consuming vast amounts of energy, time and patience. For me a very disempowering aspect of having an ASD child is that you live a life of great uncertainty, never really having much of an understanding about your child’s current prognosis or future potential.

I do not profess to have expert knowledge on the classification of the autistic spectrum. Like parenting it seems to be a constant moving line. We have gone from Autism and Aspergers to the Autistic Spectrum. From Autistic spectrum disorder (ASD), which included Pervasive Developmental Delay specified (PDD) or non specified (PDD- NOS) as well as Aspergers and even Attention Deficit Hyperactivity Disorder (ADHD / ADD) and Obsessive Compulsive disorder (OCD) have been on this spectrum. The latest pending classification is simply Autistic Spectrum disorder (ASD) with all of the above disorders removed.

In a recent discussion with an acquaintance from Autism SA, my comment was that parents would need more accurate classification. Surely the very broad ASD classification will need to be split up focusing on high functioning vs. low functioning children and where my child is on the continuum. Let’s see what evolves.

In truth it does not matter. Behaviour can affect the learning abilities of an ASD child as much as intellect can. Low functioning or high functioning children will be treated similarly behaviourally. This is where remedial and special needs schooling becomes paramount.

Why do these children have behaviours that are hard to control or may be seen to be behaving badly? Due to a multitude of issues, where the wiring in their brains have been compromised, frustration tolerance and communication issues can cause them to lash out. Sensory integration and ADHD affects behaviour, impaired social abilities lead them to not know what is appropriate or inappropriate. All kids need to be taught how to behave. For special needs kids, the lessons just take a lot longer and social cues from others have no impact in fast-tracking these lessons.

Besides behaviours the symptoms of children with ASD vary so widely. This is extremely frustrating as there are no best practice scenarios with ASD as there may be with other special needs issues. It is a condition that manifests neurologically and therefore affects all children so differently. For me this realisation has been the hardest. How in today’s technologically and medically advanced society can we not understand the workings of these brains better?

Research and understanding the ASD brain is developing all the time. With functional MRI’s we can see where our children’s wiring has been compromised and better understand where they may experience problems. But neuro-typical people are also diverse in their skills, abilities, personalities, behaviours and habits, can we realistically expect to understand how then the challenged wiring in an ASD child really moulds and shapes them?

All I know is that it is vast and daunting. As many children grow and change so does their diagnosis. As they enter adult life some have next to no symptoms, some have social problems, some behave a bit strangely, some need life long care, and some need partial assistance. Some will marry and some not, some will have children and families of their own and some not, some will have professional careers and some will work in a trade. To me this sounds very much like parenting any child. We cannot know their futures.

So I try to remind myself daily I cannot plan too far ahead, no ones futures are certain, To do my best, treat the issues as I am faced with them and see where life takes me and my children.

Yes some days I do fail miserably especially when we are facing an Autism crisis, as I like to call them. But I am only human!

By Amber Tucker

Definitions:
1. Autism – A neurological condition, present from early childhood, characterised by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts
2. ASD – is a spectrum of psychological conditions characterised by widespread abnormalities of social interactions and communication as well as restricted interests and repetitive behaviour.
3. PDD-NOS – is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.
4. PDD – refers to a group of five disorders characterised by delays in the development of multiple basic functions including socialisation and communication.
5. Co morbid conditions – Having more than one concurrent diagnosis.  Another term for this would be “dual diagnosis”.  Many people with autism have one or more additional diagnoses, such as ADHD.
6. Dyspraxia – Developmental dyspraxia is a motor learning difficulty that can affect planning of movements and co-ordination as a result of brain messages not being accurately transmitted to the body.
7. Aspergers – Asperger syndrome or Asperger’s syndrome is an autism spectrum disorder that is characterised by significant difficulties in social interaction, along with restricted and repetitive patterns of behaviour and interests.

Pleased to meet you!

I have been a mom now for roughly six years and a rough six years it has been. Rewarding of course, fulfilling of course, but also rough. Not many parents like to talk about the rough side of parenting. We have a huge amount of ambivalence admitting parenting can be hard, and lonely. We do not like to associate society’s undesirable emotions with parenting. We all tend to put on a brave face and talk about all the positives, rather than admitting how bumpy the road of parenting can be.

Do not worry – I am not going to use this forum for moaning about how rough parenting can be. I hope to share my experiences and make the road to parenting a little lighter for all those who follow my journey.

Back to me: I am a mom of three kids that I adore – two boys (aged 4 and 5) and one girl (aged 3). Do the math that was three children in three years! My husband likes to refer to them as the ‘Irish triplets.’

Three kids in three years is enough to make you the shell of the person you once used to be. I work damn hard at not losing sense of the person I am, and not letting motherhood be all consuming.

My other challenge is that my oldest son is on the autistic spectrum. Naturally that makes parenting even more of a challenge and even more daunting. Hell it redefines you as a person and makes life just plain scary!

Since my son’s diagnosis, it has been three intense years of self-exploration. This has involved redefining the parent that I am – a definition that is constantly evolving and constantly elevating my low level of patience to a new level. I have had to accept that although I am an A-type, goal driven person, I can no longer simply live a linear life, where I like to tick things off the list and move along to the next item that needs my attention. Life has become very circular and many of the things I think I have completed or dealt with come back again and again and again. Sometimes I feel that they haunt me. And dealing with needs, my children’s needs, and my husbands needs, oh apparently I also have needs! That was a daunting reality to me.

But it has also been a road where I have gained many expertise and knowledge about my self of course, my son and his condition, parenting in general and parenting a child with special needs.

That is the aim of this space. To journal my experiences and share them. To hopefully bring a little light to those who may be embarking on a similar journey, and to share issues and ideas with those already well on the path. Join me as we explore this daunting, amazing, scary, joyous excursion of mother-hood.

By Amber Tucker

A journey into the world of special needs children

Follow

Get every new post delivered to your Inbox

Join other followers: