Let’s hear the rhyme again:
‘Humpty Dumpty sat on a wall;
Humpty Dumpty had a great fall,
All the King’s horses,
And all the King’s men
Couldn’t put Humpty Dumpty back together again.’
Now, let’s make a few modifications to it:
(feel free to insert your child’s name where it says, ‘your child’):
‘(Your child) is a part of this world;
(Your child’s) abilities are constantly being twirled,
Between all of the different professionals,
And all of the many ‘experts’ of this earth,
Yet they still fail to embrace (your child’s) true unique worth’
How do you bridge the gap between what you see in your child and what others see?
What do you do when you say one thing about your child’s abilities and the professional ‘experts’ are saying another?
How can you keep the whole of your child intact when others are looking at him/her through their small piece of the puzzle?
How do you deal with professionals whose eyes don’t appear to see your child and whose ears don’tappear to hear you as the parent?
How do you be an advocate (the voice) for your child in the midst of all of the constant chatter from others?
These are just a few of the many questions I (and many of the parents I’ve worked with) have been pondering recently – especially during this time of year. For parents of school-aged children, these questions are even more prominent in their minds, as during these years, a multitude of assessments are being done, IEPs are being reviewed, placement decisions are being made, the types of new services your child needs/what services need to be continued are being discussed. Advocacy is not just for this age -group – far from it – but when your child is school-aged, you do tend to hear the word more frequently.
Advocacy though, runs the whole age-gamut from the moment your child is born and/or diagnosed to the time they leave your home and become self-sufficient adults (if they are able). If they are not able, then advocacy continues for you over a much longer time frame. As special parents, being an advocate is something that is often-mentioned in terms of what we should be doing for our children but for many of us, this concept is rarely fully understood yet alone effectively utilized by us.
How can you be that advocate mentioned earlier that is part bulldog (fierce & protective), part sheep (calm), part horse (intuitive) and part elephant (great memory)? Is this possible? I say YES – and if I was enough of a creative artist, I would attempt to draw a picture of it for you. But I’m not, so you’ll just have to use your imagination!
In its simplest form, to advocate means to speak on behalf of someone else. Therefore as special parents, we are speaking on behalf of our children – we are their voice. It’s important though that you define what advocacy means or looks like for you. One parent’s advocacy may mean being at their child’s hospital bed or school every day/week, while another one’s may mean that they write letters to the powers that be, and yet another parent may calmly sit back while decisions are being made about/for their child and only speak up when they feel it’s necessary. All of these pictures of advocacy are equally valid.
Let’s look at a few thoughts to consider around advocacy with Humpty Dumpty as our backdrop:
- Handle with Care – Humpty Dumpty is an egg and like all eggs, can break or crack when dropped or otherwise mishandled. Likewise, our children can break/crack (i.e. not reach their fullest potential) if they are not handled properly (i.e. fully supported). This does not mean that our kids are so fragile that they can’t stand the heat – the very fact that they survived being born prematurely or are coping with ever constant medical and surgical issues or are still trying to forge through after being diagnosed with autism, cerebral palsy, etc – shows how incredibly strong and resilient they are! Rather, this ‘handle with care’ reminder means that any and everyone who works with your child (i.e. doctors, teachers, nurses,therapists, social worker, specialist, etc) should/must approach them (and you) with genuine care and concern. Their mindset and approach should not be that of an aggressive footballer ready to tackle the ‘problems’ with your child but rather one of a ‘conservationist explorer’ who is curious and appreciative of who your child is and the gifts that he/she has.
- Looks Can Be Deceiving – When you think of an egg, you automatically think of something that is fragile or delicate. Likewise, many people who see our children can automatically assume that he/she is much more fragile than they really are. This assumption tends to lead others to almost unconsciously looking at our children with pity. You (and your child) don’t want or need this and it is important that we as parents do our best to stop or minimize this assumption. I’ve had several experiences where people see Alejandro with his cane and immediately put on their ‘pity face’ – you know the one as I’m sure you’ve seen it before – and say something to the effect of ‘oh poor baby, look he’s blind.’ I remember one mother I met, whose son had significant medical, developmental and physical challenges, tell me that when people saw her son, they automatically assumed that he was a ‘lost cause’ – not that they said this explicitly but their actions and tone of voice made it clear what they were thinking. Our children, like us, are human and have feelings and I am convinced that they feel and can feed off of this type of negative energy, which is why we must try to minimize their exposure to this type of thinking, as much as possible. Another element to this ‘looks being deceiving’ concept is this: just like eggs have 3 different but equally important parts to it – the shell, egg white and egg yolk – likewise, your child also has many different yet valuable parts or layers to them. Anyone who wants to see them must look beyond the surface and come to your child with their eyes, ears and hearts wide open.
- Shattered Pieces – All of the king’s men couldn’t put Humpty Dumpty back together again. I can just imagine each of them having their one little broken piece of Humpty Dumpty trying desperately to patch him back up. Therein lies the problem – they each had their one little piece and with it was focused on making sure that their piece of Humpty Dumpty fit – not that the other pieces held by others were also fitting. This is so very true with many professionals who work with our children – they often only have their one little piece of the puzzle and with it they try to fit, solve, diagnose or compartmentalize your child. When I was practicing as an occupational therapist (OT), I always pushed to treat my patients jointly with other related therapists when appropriate (i.e. physical, speech or music therapists, for example). I firmly believed that the benefits of working together as professionals significantly benefited the person we were treating because by putting our heads together, we were able to come up with a much more personalized, whole and complete treatment and intervention plan for the person. Likewise, if everyone working with your child is only looking at their one piece of the picture – their particular area of expertise – then like the king’s men, they won’t be able to put anything back together….and will probably break things up even more. It’s only when they can and do come together as a real team for your child, with you being a key partner in that team, that the whole and more real picture of your child (and the best ways to support him/her) emerges.
- Master ‘Gluer’ – I don’t even know if ‘gluer’ is a word? I’m sure it’s not but the essence of it is key. You are your child’s master gluer – meaning that you hold all of the pieces of your child together. No one else on your child’s team has the knowledge and expertise of your child – you know their little nuances, you sense things that others don’t, you see your child over a much longer period of the day, you see them in different settings and with different people, and most importantly you see their strengths and gifts. This last part is probably the key in all of this because the very nature of many assessments, evaluations, etc is that they are administered from a deficit-driven perspective – what your child is not doing/can’t do. As their parent, your focus tends to be on what they can do and how you can best support not only these areas but also the ones that are more challenging for them. I encourage you to keep doing this – be your child’s biggest cheerleader and loudest supporter. They will learn how to advocate for themselves based off of how you advocate for them now. Be their voice until they find their own.
I applaud you, in advance, for being the best advocate you can be for your amazing child and would love to hear your on stories on advocacy or any questions or thoughts you may have.