I met a group of mums not too long ago who all have kids a bit older than Wade. As we were talking, a few mentioned how the feelings of grief that some have after diagnosis can reappear at different times, usually around transition times as our kids move from one stage of development to another, like starting school. On an intellectual level, I felt strange about this. In my mind, I have already dealt with the feelings I had around the time of diagnosis. I know that my fears were mostly misplaced and I am so truly in love with who Wade is. I don’t feel like I have lost anything by having Wade. But the more I thought about it, the more I realised this is exactly what has been happening to me over the past few months.
As Wade is getting older, the developmental gap between him and his peers is getting larger. My logical brain tells me that this is ok. I know he doesn’t need fixing or to be made “normal”. I know his value is the same as everyone else regardless of his achievements but as a parent, the universal feeling of not doing enough is a monkey on my back.
I want full inclusion for Wade. I see it as an important goal and one that is not only possible but worth fighting for. The problem is…as Wade is getting older and becoming more of his own person with his own strengths and weaknesses, I am starting to ask myself whether my desire for him to be included in any and every facet of life, is more about me than about him. Trying to balance the concept of “the more I put into Wade’s development the better off he will be” versus “the more I embrace and nurture him for who he is the better off he will be” has been driving me crazy.
These new doubts about whether we are making the right choices for him have been catching me off guard in many different situations lately. Mainstream or Special development school? Or both? Or one now and the other later? Mainstream gym classes or Special Olympics gym program? More and more and more structured therapy or more and more and more of everyday life experiences? Or both? If both, how much of each and when? All of these situations have me reeling from one set of ideals to the next as I constantly doubt if I am making the right decisions.
As he moves into the next stage of development I am starting to see how easy it is for him to be left out. How quickly life can move beyond him. How much I want to teach him so that the boat doesn’t sail away leaving him standing on the shore. Usually I can work through these decisions using logic and common sense but I have been stressed and busy lately and my emotions have been running away from me. I’ve been feeling overwhelmed by the choices I have to make with a recurring question running through my mind….
Will I break him for ever if I get it wrong now… ?
This is not rational, I know…he’s only 2 for crying out loud!….but that’s what happens…
So all of these feelings were building and brewing and led to my Monumental Meltdown at the Pool.
Wade has swimming classes once a week and we have recently started at a new centre. The old place was disorganised and awful but they had these family rooms for changing and showering alone. I hate going to the pools, but Wade loves it and it’s good for him. I hate the stuffing around getting changed and unchanged. Trying to pull dry clothes onto a body that is never quite dry enough to stop your undies rolling into a tightly wound twist around your legs. But what I hate most about Wade’s swimming classes is his penchant for pooing while in the pool…
I don’t know if the combination of low muscle tone and warm water gets his plumbing moving every week or if it’s just a freak coincidence that of the 336 half-hour blocks in every week, Wade picks this particular one to go but either way it is sooooo annoying!
Last week Mick and I both went to the class. Mick swam with him and I watched from the side. We have only just started classes here so I hadn’t had the pleasure of dealing with the No.2 issue yet. At the old centre, I locked myself in the family room and sorted it out privately but here it was different. As I sat there, I noticed a seemingly ordinary woman place her toddler onto one of the change tables they have next to the pools. I watched as she deftly and confidently managed to change and clean her soiled child in under a minute and get on with her life.
I was impressed….
….and I was foolishly buoyed by a new, but completely misplaced sense of confidence….
….clearly this was no ordinary woman.
As if reading my mind, not 5 minutes later, Mick loses all colour from his face as he hands Wade over to me announcing that he needs changing. A smart woman would have said, “You’re up champ! I’m fully clothed so you can deal with it.” But instead I put on my martyr hat and approached the change tables. Instantly my new sense of confidence left me and I decided there was no way I was changing him here in the open, so I foolishly decided to take him in to the women’s change room…
on my own….
As I lay Wade down on the change table, a tsunami of pooey water erupted from his nappy forming a pond on the change table. Wade starts thrashing about and I pull the nappy down causing the remaining mess to lurch forward and coat every hinge, hole and surface of the table before landing in a pile at my feet. (Here’s a tip for young players that I have since learnt….swimmer nappies rip at the sides. Do not attempt to pull them down…!). I grip Wade by the leg as he twists and squirms and I try to get hold of some wipes as it dawns on me that no wipe can conquer this mess….
At that moment all the feelings I have been having about stress and frustration and making poor decisions galloped to the fore…and I completely lost it….I burst into tears holding the leg of a squirming child covered in crap….with no plan B.
Out of the corner of my tear soaked eyes, a vision of awesomeness swoops in and grabs Wade. A beautiful, wondrous, shining light of a woman tells me everything is going to be ok and takes Wade to the showers. I use what was once a perfectly good towel to soak up the biohazard I have created, scooping everything up into a toxic ball and throwing it all in the bin as Wade is handed back to me all shiny and new.
I clean everything up as best I can then dress Wade. Distraught and red in the face, I emerge from the change rooms, hand Wade back to Mick then head for the door. Not thinking clearly, I figure it would be awesome to unleash all over the poor women behind the counter. I inform them of the biohazard in the women’s change rooms and lament my ability to complete this simple task. (Which probably sounded more like..habba labba blaa bla whaaaa!!!!). The people who work here are amazing. They calmed me down and told me not to worry about it.
So, I returned to class the following week. I nodded politely to the women in the office as I arrived hoping they all suffer from some contagious form of memory loss and headed in.
During the class, a lady from the office came over and told me she had put a change table in the disabled change room and asked me if I’d like to use that room in the future. She didn’t want me to feel as though I was being segregated or anything but there is a private shower and change area and I was welcome to use it every week if I wanted.
My first reaction to offers like this is that I don’t need special treatment. I don’t need a fuss made over me or Wade. I’m no different to other mothers and we all have our difficulties… I can handle all this on my own….
Then it hit me like a bolt of lightning!
I need this. Getting changed is hard. Wade doesn’t listen to my instructions when there are 20 other women and kids getting changed. Sometimes I need to get down to his level and be calm and quiet about what I want him to do. If I am flustered or trying to rush him, he gets flustered and I don’t want to be half naked with my butt in someone’s face while I try to do it. It’s not fair on him. These needs aren’t special or extra, they are just needs. It just so happens that this solution to the problem is better. I’m not going to storm into every establishment demanding my own private quarters…. I can make the other situation work if I have to but this is better and I should take it. It’s not an admission of failure, it’s about getting the job done in the best way possible.
After having some time to think about what’s been going on lately, I’ve come to the conclusion that inclusion is not about making him “normal” like everyone else in order to fit in, inclusion is about identifying how best to make a situation work for everyone. Sometimes that means we have to work harder or longer to teach him the right skills, sometimes it means we take the help when it comes our way and sometimes that means others will have to be patient and understanding too.
Inclusion will happen best for us when I remain mindful of who Wade is and what he needs. When I don’t measure my success as a parent by how many boxes he ticks but instead measure it by getting the best outcome for him, not my ego. I am sure this wont be last time I feel doubt or grief or frustration but hopefully I will see it coming next time.
Sometimes life is much easier for me than it is for average parents, sometimes it is much harder. Sometimes my needs are simple and sometimes they are complex but nothing is ever black or white. There is no script for inclusion, no recipe. It’s a case by case, day by day thing and it’s a two way street. These amazing women at the pool weren’t just being nice to me because Wade has Down syndrome, they sincerely saw a genuine solution to a problem. And they do this with every other parent there. They are thoughtful and considerate and are looking out for the best way to improve the experience for all of their clients. This is the kind of inclusion I want for Wade. The kind of inclusion every parent wants for their children. Opportunities to be involved, strategies to modify things to suit us and the understanding and cooperation of those around me if I need a hand. Maybe if every parent is released from the pressure to be the most perfect and the most capable with the most brilliant kid then we might all find more of our needs are met.
It’s a shame I had to get up to my elbows in crap before I realised it!