There are many arguments against “labelling” kids. People don’t want their child to be labelled and known as the “fat kid” the “dumb kid”, the “naughty kid”, the “ugly kid”, the “slow kid”, etc – and that is completely understandable, especially as these particular labels have negative connotations. However, when it comes to special needs, a label – or professional diagnosis – is often actually really important. As much as we may not want our child labelled as being afflicted with a certain attribute or special need for fear that they will be treated differently, obtaining a firm diagnosis is the first step towards really helping your child.
The process of obtaining a diagnosis is often not an easy one. In our case it was easier than most, as it was confirmed that Harry had suffered from a stroke and subsequent brain damage when he was three days old. However for most, the process goes something like this: Parents, or often grandparents, will notice something not quite right with their child. This may be to do with mannerisms, learning ability, speech, coordination, or generally not meeting milestones. The parents will then approach their doctor or paediatrician, and will often be treated like they are crazy overprotective hypochondriac parents who don’t know what they are talking about. The parents will push harder, and try to get second and sometimes third opinions from various specialists, and will often be told that they will assess the child at some point in the future.
You will spend more and more time watching your child closely, looking out for signs of this and that. Sometimes you may think you have a fair idea of what is “wrong” with your child, but regardless of how prepared you think you are, being told the formal diagnosis by a professional will whip the floor out from under you. You will feel like you’ve been punched in the stomach. Regardless of what you may have prepared yourself for, the next few months will more than likely be absolute hell. It is important to know that it is normal and perfectly okay to “grieve the loss of the child you wanted or hoped for”. This doesn’t mean you don’t love and accept the child you have. Before your child is even born you will have had hopes and dreams for him/her, which may no longer be possible. The child you must grieve for is an imaginary child that you thought you would have. I was offended at the thought of this when it was first presented to me. I couldn’t see how I could possibly do this without it reflecting that I wasn’t 100% happy with the child I have. But this is not the case. It is a process of dealing with loss of hopes and dreams, and fighting with your own guilt makes it even harder. I love my son, and I can honestly say I have NEVER wished him to be any different, or wished he didn’t have cerebral palsy. However, I cried every single day for the first two-three months of his life, and then every other day, and then most weeks, for at least the entire first year of his life (no, I did not have post natal depression). I obviously needed to grieve for something.
So what do I do now?
Firstly, the most important thing of all is to remember that your child is exactly the same person they were yesterday – they haven’t suddenly acquired a physical impairment or mental condition – they already had it, they just didn’t have the label. (Obviously some diagnoses are worse than others, and I am not talking about finding out your child has a life-threatening illness or condition.)
The diagnosis or label is actually quite valuable. Often without the label the services available to your child are limited. Most government funded services have quite specific eligibility criteria and without a formal diagnosis these options will not be available to you, no matter how glaringly obvious the situation is. Once you have a diagnosis, you will often find that many doors open for you. However, you will also find that you have no idea how to find these doors – and no one will tell you. There is a huge information gap (in Queensland at least) – somewhere along the way someone is meant to point you in the right direction, right…? Wrong. The best way to find out information is to find a group of parents of special needs children, preferably with the same issues as your child. These parents will be your savours.
As a parent, you are your child’s advocate. If you have a concern – fight. Fight to make sure that your doctor or paediatrician takes it seriously. Fight for all your monetary entitlements. Fight for any services you are entitled to. Fight to have your child assessed and reassessed if necessary. Fight for people to return your calls – be a pitbull, you are not trying to make friends, you are trying to get your child the help you believe he or she needs. A mother (or father) often really does know best – and don’t let anyone tell you different.