When the wheels fall off…in public…

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…

fully clothed…

on my own….

Big Mistake.

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!

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20 thoughts on “When the wheels fall off…in public…

  1. Wow, sounds like great staff at a great facility. We don’t even have change tables at ours 😉 Great thoughts. I hope that realisation (shame about the poo, but hey, life works in mysterious ways) has given you a chance to breathe. You’re so right – all parents have ‘special needs’ when it comes to their children, whether or not those kids come with an official diagnosis and trying to feign perfection doesn’t help anyone. PS. Hope you got a wine that night 😉 xx

  2. Your description of the poo incident was classic!

    I too suffer from the fears of “breaking my girls” if I make the wrong choices for them. Funny how we just assume the status quo is right for typical kids, and therefore should be what we want for our kids. In the long run a situation might be wrong for both or right for both, or one or the other. Each kid is their own person, and finding what is right for that individual person can be tough especially when we already have “the way it is” burned into our minds.

    Thank goodness for the great people at the pool who worked out a super solution so that you can enjoy swim time a little more.

    • Thanks! I guess the worry comes when I question if the delay is because that’s who he is or it’s because I haven’t done enough as a parent. The irony is…I never wanted my kids to be just like everyone else! If he didn’t have a disability, I’d be worried if he was too conformist!

  3. Loved this read!! Even after hearing the story from you, reading it is even more entertaining! You have a gift my friend. xoxoxoxox

  4. So many things to say about this post! First, I can totally identify with the poo incident! Similar thing happened at our public pool a few years ago, but lucky for me no one else was in the bathroom when I had to wash him off in the sink (no showers). A poor lifeguard was left to hose down the floor….there is just no good way to contain a pool poop sometimes.

    Second, I always find it incredible that whenever I am most in need, in swoops some amazing mom to casually save the day. It’s always moms; I’ve found this one constant to be comforting.

    Of course, I’m always doing the back and forth thing to — am I doing too much of this and not enough of that? I’ve found that alternating between structured activities and “real life” experiences as you said have worked best for us. As he’s gotten older it’s become easier and made more sense to do less of the structured things and more things that are just fun. A lot of it is trial and error, and you won’t ruin him if you make some choices that maybe turn out to be not right; just try something else the next time! Being around other children his age has always been key for my son, who is a twin and always has a built-in peer.

    And while research definitely shows that inclusion in the general ed setting leads to the best outcomes for “most” kids with Ds, every kid is different and their needs change over time. A wise special needs mom gave me some good advice once when I was struggling over picking the best school for the long term for my son. She said just take it year by year (when it comes to big decisions; the rest have to be day by day I think!). You can only worry about his education one year at a time. Pick what you think makes the most sense for the next six months going forward, with the intent that if it works out, it’s good for a year, and if not, you can change course. That’s how I decide things anyway! Love reading your blog.

    • This all sounds incredibly sensible. I think flexibility will be the key. Always be
      prepared to go to Plan B. (…and make sure you have a plan B where poo is involved!)
      Thanks for your thoughts.

  5. “…inclusion is about identifying how best to make a situation work for everyone.”

    I love that. It seems like we spend so much time convincing the world that our children are more alike than different, that we can forget that sometimes they do have different needs, and for that matter, all children do. Inclusion is about being mindful of all of those needs.

      • To me, inclusion isn’t about making everyone the same, it’s about accepting diversity and for everyone to realise that it’s ok. I figure that would take a whole lot less energy and also end in a better place… And you’re totally right – who wants their kid to be the same as everyone else!? As I read your story I could identify with so many of your anxieties about the choices you make now and the effect they are going to have on our kids later. My kids don’t have Down syndrome, but I can still relate as another mother. I think many of your thoughts are just the expressions of a good mum. Your ideals for Wade will grow and develop and change just as he does, they will always align with who he is and who he becomes as he grows up, because you’re an observant and tuned in parent. You will try different things and you will very quickly see if they are the right thing for him, or not. If not, you’ll change and adapt. That is how I see it, anyway… Also MAJOR kudos for surviving the pool adventure… I salute you!

      • Hey thanks Lucy. I often try to write about the fact that most of my parenting dilemmas are the same as everyone else’s. it’s a good way to show that raising a child with Down syndrome is not as scary as people might think. However there are differences as well and I like to write about them too. It’s the differences that make decision making hard and I freak out trying to work out whether an issue is a parenting thing or a DS thing because its not always obvious initially.
        I have a system where I worry worry worry, analyse analyse analyse, doubt doubt doubt….then make a decision that I’m usually happy with. Works for me but drives those around crazy!!!!
        Thanks for your comment!

  6. Thank you for sharing your story. This reminds me so much of something that happened with my son when he was younger. Eli also has DS and when he was about 18 months old I was taking him for swimming classes as well. He has Hirshsprung’s Disease (more common in kids with DS) and therefore has a colostomy bag. Well, I was in the women’s locker room at the pool, already struggling to deal with Eli’s behavior and feeling anxious and self-conscious…I had Eli up on the changing table and he suddenly reached down and ripped off his colostomy bag and started frantically trying to touch his stoma and his poop and putting his hands in his mouth. You can probably imagine the scene! As I stood there in tears, trying to get the situation under control, no one offered to help…people pretty much acted as though they didn’t notice what was going on. It was awful! I am so glad that the kind people at your pool were so helpful and made appropriate accommodations for you!

    • Oh my goodness, that must have been awful for you. I hate when people just stand there and do nothing when someone obviously needs help. Thanks for your story!

  7. Oh dear! The problem with those ‘lose it’ moments is that we never know they’re coming! I’m always left feeling shocked on top of upset and humiliated. It sounds like you have great people around you. We just started Auskick and we love it but the first couple of weeks I was a tense mess because of concerns he would be treated differently while at the same time wishing they would give clearer instructions. A couple of times the kids ran off and my boy was left standing simply because people don’t use clear language. He’s having a ball though and he’s mastering bouncing the ball and catching it again while on the run!!

  8. Pingback: I found true inclusion and now I don’t want anything less. | Embracing Wade

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