Monday, May 5, 2014

Explanations are not Excuses (The Myths: Evaluating things we say to Special Needs Parents)

Thanks to all of you who have stuck with me for the topic of special needs. If you didn't by chance manage to catch the series of Let's Call A Spade a Spade: Special Needs Diagnosis, feel free to check it out. 

There are many myths and mindsets regarding special needs that abound. I'd like to tackle a few of them today. I speak in defense of some parents that may not be able to tell you what is on their mind. I think sometimes that we need to identify these mindsets, and their effects, to help us to re-evaluate their usefulness.  

"It's a parenting issue"

This comment carries with it the assumption of devaluing the parent, or their skills or the amount of work they put in. It's tantamount to claiming the parent is a poor parent. No question, as parents we have a responsibility to train our children in the way of developing character. This is always a work in progress. It's a marathon though, rather than a sprint, and sometimes meeting behaviour related goals with a child are going to take a very long time to achieve.

To simply criticize the parent in the middle of their journey really is quite unhelpful. It implies they are not doing their job. If, they also happen to be a stay at home parent, for whom that is their life's work, it pays out double insult.

Lets take for granted for a moment, that the person saying such a phrase has a higher skill level as a parent, than another special needs parent. Lets even go so far as to say the special needs parent would benefit from your expertise. Would they really be willing to come to you for any sort of skills improvement, if your approach to the situation is to put them down with your comments? 

No, there is a better way. It requires walking along side them.  It requires not implying with our words that we think they are a 'write-off'.
I am in the camp that says that I will approach it from the standpoint believes the best of a parent. That the parent is doing their job. That there are effective approaches to getting where they want to be and ineffective ones. Sometimes we simply need to tweak what's not working and choose to reinforce new habits. 

I was encouraged greatly once in a training session, to hear, that "sometimes you can be doing everything right, and still have the child be a challenging child. It's not a negative reflection on your skill level or the work you're putting in." 
What about that doesn't make you want to fight a little harder to help the child? It implies that it's not you as a parent, that is a write off? Rather than a hope-taking statement, it's a hope giving one. 

Proverbs 13:12 says "Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." Before using this statement, evaluate, which effect would you rather have on a parent that may need encouragement to succeed?

"It's just an excuse for your child's poor behaviour"

You'd be surprised to find out how many things that 'look like' laziness, or bad behaviour, or rebellion, are actually completely different things. A child with Auditory Processing Disorder, may look like they refuse to listen to you, or ignore you. A child that can not sit still, has poor planning skills, can't carry tasks through to completion may have ADD or ADHD. The child that speaks with no tact and can't carry on a conversation with eye contact of any type may be working with Autism. You may also have children who can not stand tags, or external stimuli, that meltdown due to things going on outside of them, that have issues with Sensory Processing Disorder. There are any number of unwanted behaviours, or lagging skills. How we look at them will make all the difference.

We each of us look at these things through a lens. Either one can choose to look at these things in a way to devalue the child, and makes negative character statements about them, or see them through the lens that identifies a weakness or a lagging skill, and choose to train them and give them the skills and coping methods required to succeed. 

As a side note, I think that some people make the assumption that when a reason is given to help promote understanding of a child's condition, or to ask for understanding, it often gets looked at as though the parent is trying to condone a given behaviour. Not necessarily so.
 I'd like to draw attention to the fact that those ideas are actually separate concepts, and they do not necessarily go together. Yes, it IS possible for a parent to try to shrug their responsibility. Yes, it is possible for people to fail in their responsibility. Making that line of reasoning the starting point makes for a pretty short and hurtful discussion though.

 Before using that statement, evaluate whether you are assuming motives in a parent, leaning toward lack of effort, that may not be there. If you don't jump to that particular conclusion, you might just get to learn something new about how to manage that particular condition, because the parent will be able to show you a thing or two.

"_________ is over diagnosed"

This is a pretty unhelpful statement. It's kind of on the level of asking a pregnant woman whether her pregnancy was planned. If she answers affirmatively, it was kind of a waste of breath to have asked, and if she answers to the negative, you've possibly shamed her, or at least made her uncomfortable. All it serves to do is cause drama. What was the point of it?

Consider then the effect of saying this to a parent that trusts you with this information, and having one respond back to them, in that manner:

1) You'll shut them down. They know it's no longer safe to discuss the topic with you. They will fear you are in the camp of those who suggest that mental health or special needs diagnoses 'don't exist' or that it's a product solely of 'bad parenting'.  Not too much makes a person feel less safe than criticism and judgement.

2) It negates whatever emotional roller coaster brought this parent to the place they are in. It is hard to accept that there is a difference between your child and others. It is hard to find answers to cope. It is hard to feel alone, or like no one cares. Sometimes special needs comes with a difficult set of behaviours to manage, a physically and emotionally demanding child, and just plain old exhaustion. These are parents that require support. 

3) It  undermines whatever work has been done between this parent and their doctor and their medical support system. 
 It suggests from the get-go that they should have no faith in their doctor's judgement. It implies that the diagnosis of their specific child is wrong by default.  Let's take for granted they are happy with this doctor, otherwise they would have left and found another one.  That medical team may be all they've got for support and training. So, before you making that statement to a special needs parent, you might want to evaluate whether you are a qualified Behavioural therapist, Occupational Therapist, Doctor, or Trainer for problem behaviour management, and feeling patient enough to walk along side this family while they are sorting it all out.

 Rather, if you're truly interested, you might be surprised to find out, how many hours of testing they had to endure; How long the wait list was; How many appointments they had to attend; How many specialists they had to consult to finally get to the right answer. 

Yes, there are some times that a diagnosis is straightforward enough to make in one appointment. Some parents early in their denial stage of having received a new diagnosis may complain about that. Yes, there are some doctors that are 'quacks' and misdiagnose, propagating the myth, of over diagnosis, but other answers take an incredible amount of time to tease out. The existence of misdiagnosis does not by default make all diagnosis incorrect.
 To negate any of that of their experience, by implying that their diagnosis is wrong by merit of 'over diagnosis', helps no one. The parent is still left with the troublesome behaviours to manage. 
Before using this statement, evaluate whether you are qualified to be the medical team's replacement in management of those challenges. 

Sometimes we do ourselves and others a disservice, if we do not think through the affect that these words, though commonly spoken sentiments, may have on people. If putting these thoughts out here saves one parent the heartache described above because someone made an evaluation that they didn't want to cause this effect, then I have done my job here.

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