Important

“Don’t sweat the small stuff.” ” Life is too short”. ” Be grateful for what you have. ”

We have all uttered these phrases at one time or another. But have we really taken the time to consider them, to live by them?

It normally takes a drastic or traumatic event to make people stop and take stake of their lives, and what is important. I would like to think that since Maclain was born, I have really taken stock of what is truly of value in my life. But the reality is that while I am probably more aware than most people of how precious life can be and how easy it is to take things for granted, I still get caught up in those trivial worries that take up way too much space in my life and my head.
I still worry profusely about how clean my house is, how successful my kids birthday parties are, how perfect the family Christmas card looks. I think way to much about what people think about me, whether my hair looks ok, and if my shoe collection is vast enough. I suppose that given all the real worries in my life with Maclain and his future, it is ok to direct my mind elsewhere with less productive thoughts. But are they side tracking me from spending my life focused on the right things?

When something bad happens I am again reminded very strongly about what is important. Truly, vastly, important.

I have been following a blog, written by a mom of a child with special needs, since 2007. I found it one night after Maclain had come home from the NICU while searching the internet for people who were experiencing the same as I was. Her name is Kate Leong, and she started blogging after her son Gavin was born, and had to be admitted to the hospital again because he became quite ill. What drew me to her initially was that Gavin was a surviving twin, and he too was dealing with challenges similiar to Maclain. At that point in my life, I devoured many blogs and online journals, but few stayed with me because life got too busy to spend hours at night reading them. This one however always kept me reading. Maybe not every day, but at least once a month I would check in to see how Gavin was doing, how Kate and her family were holding up, and to be inspired by the real words that she wrote. Her blog is positive, because she is positive, but it isn’t all sunshine and flowers. Kate writes about the beauty of her children, the triumphs that Gavin has made over his disabilities, the pride that fills her heart and the hopes and dreams she has. The name of her blog being so fitting. “Chasing Rainbows”. But she has also had many tragic losses in her life including the stillbirth of her daughter, and heartbreaking fertility problems. She has expressed her sadness at things Gavin couldn’t do, and described her fears when she would think about his future. But through it all, she kept me, and over a million other visitors captivated and hopeful.

On Monday Gavin died. He was 5 and a half years old.

He became ill a few days ago, and after suffering repeated cardiac arrests, and seizures, he was pronounced brain dead. And on Monday, he became the ultimate hero, when his parents had his organs harvested for transplant.

I have not stopped crying since I read the news of Gavin’s critical illness, and subsequent passing. As she has done every day since she started her blog, Kate has been posting daily since Gavin got sick..

The day that Gavin was pronounced brain dead, it was Kate’s birthday, and her greatest gift was that she got to hold him for what would be the last time. And I have not stopped thinking about that. This mother, who struggled to get pregnant with Gavin, and then spent the last 5+ years being his cheerleader, playmate, champion, caregiver, and devoted parent, would never hold her son again. How is that right? How can that be when so many people take so many things for granted?

I am reminded again what is important.

I spent extra time on Sunday just snuggling with Maclain on the floor. I took some time to explain to him all about the game of golf, and Tiger Woods, and why Daddy couldn’t turn the channel because the Masters was on. . I tickled him a little more than usual. I actually put his head in my hands and stared at him. Soaked in the wonder of my incredible miracle.

This is what is important
.
I tucked Chase in twice that night, and then told him I loved him an extra time yesterday. I let him sleep with me on Saturday night when he asked for a special night. Grateful that he wants that closeness with me, and feeling blessed that I have my older son healthy and happy. I watched him sleep for a bit last night, and smiled at how similiar he and Maclain are when they are at rest.

This is what is important.

I had dinner with my family last night, and then went to spend time laughing and sharing stories with some friends. Then I came home, and went to sleep in a warm bed, with a roof over my head, and my husband snoring beside me, and my children having sweet dreams in their rooms below mine.

This is what is important

God Bless you Gavin, and your parents and your loving little brother. Now go and chase those rainbows.

A little help from my friends

IMG_4503They say when something bad happens in your life, your realize who your true friends are.
After having lunch with another special needs mom a few months back, I was left thinking about the friendships in my life. She and I had discussed how to deal with the friends from our “old life”, who just didn’t seem to be able to understand our “new life”. She has a circle of friends who don’t seem to be able to support her now that she has a child that doesn’t fit with the norm, and she really wanted to figure out a way to make things easier for them. Even going so far as to try to figure out what she should do for her daughters birthday party, so that her friends wouldn’t feel uncomfortable. She is a caring and thoughtful person, so I wasn’t surprised, but I could really feel how upset she was by the way some of her friends have failed to embrace her special needs life. Of course my first instinct was to tell her to drop them all, that they should be the ones trying to help her and not the other way around. But then I stopped to consider that friendships work both ways, and that like everything else in life, some people take longer to adapt, or don’t know how to help, and maybe they just need to be educated on what being a friend to a special needs family is all about. If after all of that, they still choose to be selfish, and insensitive, then they should get the boot. I did also say however that friends play different roles in our lives, and that maybe these were not the kind of friends that you invite to your child’s birthday party, but they are perfect for a girls night out, when you want a break from all things special needs. Sometimes we all need friendships that are light and airy, so long as they make us feel good, and not bad, and we take them for what they are.
I have lost some friends since Maclain was born, simply because our paths no longer seemed to run parallel, or because they just couldn’t offer the support and love that I needed, and they really did cause more pain than gain. But I have also seen many friendships flourish in ways I never thought possible.
I have seen neighbours become life long friends, who make every effort to help us in our journey, and they love Maclain with all their heart. I have seen former girls night out friends and parents of classmates rally around to collect garage sale items for our fundraiser, and buy tickets for raffles that will help us send Maclain to camp. I have been honoured to see my friends in a sea of orange wearing tshirts at our garage sale, while sweating in the heat, and haggling with buyers, all the while with a smile and giving it their all because they wanted to help. I watch grown men dance silly dances to get him to laugh, and they call him by nicknames like “the Clainer”. Friends that I have had for 10, 15, 30 plus years have continued to be as good a friend now, as they were back then. They have raised money through annual golf tournaments, and they take great pride when they get him a birthday gift they just know he will love. I see the joy in their eyes when they hear Maclain master a new word, or walk in his walker. They include him and us in all of their celebrations, and they don’t care if his wheelchair tracks mud in their house. And while I know it can’t be easy for any of them to see us struggle sometimes, or hold back their tears when I am having a bad day, they never let me down. I get a quickened pulse, and a soft heart when I realize how much our friends care about what we are going through. I have watched how they have made friends with my special needs friends, and how now friends of our friends have become OUR friends. I get to witness it every year when they entice more people to come out to support the Three to Be Gala. They do this not only because it is a fantastic mind blowing night out, but because it is a cause so dear to my heart, and they know how it will help families like ours. I try to be so conscious about not taking too much, and making sure I give back as well because I really do cherish these relationships deep down. I will leave you with a pic that I took on our recent trip to Disney. Maclain was in his wheelchair watching some characters dancing. I had wheeled him around and moved his arms to the music, and he loved it. My friend Sherine took him in his wheelchair for some more fun, and before I knew it, she had lifted him out of his chair and was holding him in her arms dancing with Goofy. I was in awe. I quickly ran to her and said she should put him back, I didn’t want her to get hurt. She laughed and shooed me away, and they continued to dance.

Membership has its privileges

There are times when I get really sad about the way things have gone in our life. It is usually because something has happened in my day that gives me reason to think deeply about life. I try really hard to let the realities of our life not get me down, because I can’t change what has happened. And I know that I work really hard to try to have some input on outcomes, so it gives me a bit of a sense of control.
When I have days like this, my husband will always revert back to his favourite 3 comments.
1) ” Maclain is the best, and we love him exactly as he is, he is a great kid”
2) ” We are lucky we have so much support from our friends and family.
3) “Think of all the amazing people you have met, and the things you have done and seen that you would never have gotten to”.

The conversation typically takes place in the hot tub, at night, with a glass of wine. And I usually nod in agreement at the first 2, but I always make a face at the third. For some reason, I never found comfort in that last point.

The last time this talk happened, I took some time to think about where I have been, who I have met and what I have experienced in the last 5 years because of having a special needs child. I wanted to really assess if I would gladly trade all that for a typical child?

I finally realized that if I wouldn’t want to trade Maclain for anything in the world, why would I want to trade any of the benefits that have come along with being his mom?

I joined this “club” 5 years ago. I didn’t ask to join, but I also didn’t have to pay an initiation fee and no one discriminated against me.. I also can’t ever be kicked out. It comes with a lifetime membership.
There is no club president, and no logo or clubhouse. But there are privileges.
The people I have met in the club have been varied. Its a mix of old members and new members, and there is someone joining almost every minute. We are in our 20’s, 30’s, 40’s and 50’s and beyond. All races, all colours, all religions. Men and women. Gay and Straight. Some have children who have passed away, but most still have their precious ones with them. We have all been first hand witnesses to miracles. We share stories and ideas, and sometimes there are even parties. There is almost always someone who you can relate to and visa versa, and when you need a shoulder, you are offered many. There is no secret handshake, but there is a silent code. We have each others backs. When one of us gets hurt by words and comments from people who aren’t in the club we all feel it. When one of us has a battle, the others all get scars. When we fight for our child, we are fighting for all the children of our membership. If one of us is looking for an answer to a question, we don’t get one, we get tons. Some of the people in this club have become my dearest friends. I love them, and I would do anything for them. I would NEVER have met them in any other life. Since joining this club, I have traveled to cities I have never been to before, and there is always another member of the club available to welcome you with open arms upon arrival, even you have never met in person.
I have had the honour of meeting the most inspiring children, parents, and caregivers., and have become friends with people from all walks of life, in various jobs, with all sorts of personalities. I have experienced much sorrow, but have also been given reasons to rejoice. I have received awards, and also handed out accolades, and I have been to some pretty amazing events. I have seen how caring strangers can be to the members of our club, and how much of an impact that has made on the lives of those people have been affected in return. Sometimes you find yourself in a place you were always meant to be, but would never have sought it out. That’s how I feel about the “club”

I am proud to be a card carrying member of this special needs world. And as hard as the days can be, or as scared I may be of the future, knowing I am in the best of company gets me through those difficult times and gives me hope.

Eating an elephant

Even before Maclain, I was always one to root for the underdog. I would pick the team with the least favourable odds in the Superbowl.
I have always been the one to speak my mind in front of tons of people, and say what everyone was thinking, but didn’t want to say outloud. It usually got me into trouble at school, or work, but I still did it. I would become passionate about changing the system, opening people’s eyes, questioning the rules, and not settling for something because it had always been done that way.
But when Maclain came along I was thrust into a system that was riddled with flaws. Everywhere I turned there was something that didn’t work right, meet our needs, or provide the proper support. I couldn’t find resources, or get answers for what we needed to help navigate our new life. The problem also was that the deeper I dug, the worse it got, and the more I saw that needed to be changed. It reminded me of the little boy who put his finger in the dyke. Cover one crack, and another one starts. To be honest, all of these cracks caused me way more anxiety and stress than Maclain’s actual diagnosis. There was and still is so much that needs to be changed or altered but where do I start? I know that little things can make a world of change, but when you have a list of a thousand little things, it can become overwhelming. I often tell people if they want to do something simple and have an impact on the special needs community that they live in, they should call and ask for a special needs swing for their local park. It normally takes one phone call or email, and 2 weeks later it is installed. This little addition to the park now makes that environment inclusive and gives those families with kids with physical disabilities can have another place to visit and participate in. The impact is far reaching. My problem is that when I turn that advice on myself, all I can see is the next park, and the next park and so on, and I get lost thinking about all the swings that have yet to be put in. Suddenly I want to start a full fledged campaign to get a swing put in every park that doesn’t have one. And then I want to change the requirements so that no park is every built without one, and then do you see why I get so stressed? I can’t just eat one chip, or one cookie. Same thing with trying to change the world.

When I feel overwhelmed by all of the things that need to be modified or adapted, or completely overhauled so that they can adequately meet Maclain’s needs, I get the motivation I need from knowing that if I do something, other families and children may benefit. It just helps me to think that my fight will not be in vain. The problem with that though, is that I feel so much pressure to make things happen quickly, which is not the way things actually happen. And then I get even more upset because of the obstacles in my way. There is great satisfaction in changing a process or policy, but for me the moment is fleeting, because there are still 999 more things on my list that I want to change. It is the never ending story.
I often think that my brash attitude, and overbearing personality have served me well given the challenges I face. I know what they say about bees and honey, but I don’t normally take the sweet route to get things done. In my experience, being nice usually only get my demands dismissed. I also get so extremely frustrated when parents keep having the same fight over and over and over. And what makes it harder is when I talk with families who don’t know how to fight for what they need. I immediately want to take their battles and charge up the hill with them. It by no means makes me think I am any kind of martyr or superhero, because I certainly am not. Its just hard sometimes for me to know of a problem a parent is having, and ignore it. I automatically get out my list, and add to it.
If only our prime minister, party leaders, school board trustees, hospital CEO’s, and many more were to have a child with a disability. Then maybe things would be easier. I just always find it incredible that not one single day in the last 5 and a half years has gone by without either myself or another parent having an issue with the way things are for our kids. It often brings me to tears thinking about how much we have to fight and claw and beg. And quite frequently I feel defeated because I want to change so many things. Where do you start, and better yet, where do you draw the line?
What is it they say about eating an elephant? A bite a time? But I ask you this? If the elephant was trying to crush your child, and wreck your house, wouldn’t you want to find a quicker way to devour it? And then immediately put something in place so that it doesnt happen to someone else? How many times can we all eat the same elephant?

Who’s awesome? You are.

Most parents never feel like they are doing enough for their children. It is just the way it is. It starts early on, and it never stops. I didn’t breastfeed long enough. I didn’t read to him enough. The birthday party wasn’t fun enough. I didn’t push them enough to do their homework. I should have made them eat more veggies.

The list goes on and on.

Now, add to that a child with special needs, and the anxiety about doing enough for your child increases ten fold. Remember, there is already a ton of guilt hanging around from our child’s diagnosis.

Why are we so hard on ourselves?

When Maclain was diagnosed I went ballistic in my search for things to help him. I figured that if I threw enough you know what against the wall something had to stick. I was worried that time was not on our side, and that those early years were so precious. It was all consuming. I travelled from Picton to Michigan, and everywhere in between. Our schedule was filled with Medek, OT, PT, CE, SLP, AVT, Hydrotherapy. We had in house, out of house, private pay and public funded programs. I bought every stander/walker/seating system/bottle/sippy cup/floor wedge and any other gadget I could find. I read book after book after book, and changed strategies for feeding, sleeping, drinking, stretching. And worst of all, I always compared myself to other parents out there who were running the race along side me to find a way to fix their children. I would feel defeated and depressed as I quickly determined that their kids seemed to be making more gains. What was I doing wrong? Despite everything I was doing, I felt that it was never enough. People would comment on how well Maclain was doing, and would mention the gains they could see. I would smile slightly and nod in agreement, while I said in my head that they were just being nice, and he really wasn’t making many gains. I could not get past my quest to do more, so I was oblivious to the great things that Maclain was doing. I started to run out of energy, money, postitivity, time, and hope. Maclain wasn’t walking, or sitting, or getting more head control. I had failed him. I constantly lost sleep thinking that I had made the wrong decisions for the therapies I chose, and I had picked the wrong equipment. I worried non stop that I did not read to him enough, expose him to enough language, or spend enough time putting him on his tummy. I struggled to keep up with all the homework that the therapists gave us to do in our “spare” time. I lived like this for almost 5 years.

I am not sure when or how it happened, but at some point, I started to realize that enough was enough. I was being too hard on myself. My son was flourishing in his own way, and it was because of all of what I had done for him. I finally allowed myself to say “Yep, I am a good mom, I am doing ok, I am doing enough and my son IS making gains” I think it is because I stopped comparing him to other kids, and started to look back at how far we had come. I took time to stop and see the things he was learning and doing. No, he isn’t sitting, or walking, or feeding himself. No, he hasn’t made a ton of gains in his physical functionality. He is however doing things the docs said he would never do. And he is a happy and much loved little boy. I began to understand that there are so many factors that come in to play when a child has a disability. Causation, age at which the insult happened, specific type of genetic disorder, other health issues, seizures, chromosonal abnormalities. No two kids are alike. My son happens to have pretty severe damage to his deep brain. It is something that for now we cannot change, and it may be a reason why he will never get the functional gains I hope he gets. This is not my fault, and I cannot beat myself up over the fact that no matter what we have tried, he still can’t sit or walk. It also doesn’t mean that we will ever give up, but my goals for him have changed, and other things have taken more of a priority. It is all part of a process that I have never been a part of before. I have started to figure out that going to the movies, out for dinner, to the zoo, visiting the cottage, making cookies, and hanging in the hot tub are all really important activities, and that while they are not therapy, they are not a waste of time. They are a part of being a family, of having a child, and of living life. It is ok to spend an hour on the swings at the park, instead of an hour at a treatment centre, and I don’t have to feel that I am cheating Maclain out of getting therapy.

I had lunch with an amazing mom last week. She is in such a tough place emotionally because of a recent diagnosis for her daughter. We spent alot of time talking about guilt, and that feeling of not doing enough. She compared herself to another mom who she feels does way more. I was quick to point out that you cannot compare. You can only do what you can for your child. Everyone is so different in their financial status, emotional state, therapy beliefs, goals for their children, and energy levels. If I compared myself to Dana, one of my besties ever, I would be forever depressed! She has boundless energy, enthusiam, positivity, and a fantastic young body that I swear is run by the energizer bunny, oh and she has a teaching background to boot! I simply do not have all of that, but I make do with what I do have. I reminded this mom over lunch that she needs to think about all of the gains that her daughter has made. She said that it was because of the great therapists that her daughter goes to. I said, take some credit for that. You get up every day, get dressed, make phone calls, arrange appts, drive your daughter everywhere so she can participate in therapy and recreational activites. You also have a husband, a house, a job and you have another child who also needs your love and attention. I wanted her to know that she is amazing, and to be proud of all the things she is doing for her daughter. I could see myself in her, the way I was just a short time ago,

If any of you special needs parents out there are reading this, I want to say this to you. Not because I have to, but because I believe it with all my heart.

You are to be praised. Your child loves you and they are happy and content because of all you do. They are making gains because of you. You are not only doing enough, you are in most cases doing way more than enough. You should be proud. You should take credit for the battles you have taken on, whether you feel you have won them or lost them. Give yourself a break. Don’t feel bad because you let your child watch too much tv while they stood in their stander so you could make dinner and put on a load of laundry. You didn’t cause their disabilities, and you can’t fix it. You can just do your best, as you know it to be, with the information you have available. You are the best parents your child could ask for.

“In the hopes of reaching the moon men fail to see the flowers that blossom at their feet.”

― Albert Schweitzer

“Paging Dr.Know-it-all….Paging Dr.Bigshot……”

Ok, let me start this off by saying that there are exceptions to every rule and situation. I write about my experiences, and those that I observe, but I have no way of knowing everyone’s individual experiences. I do however think that for most of parents of kids with special needs, you will be able to relate.  There is not a day or week that goes by that I don’t hear of a struggle that a parent is having with a doctor in trying to get a referral, or treatment, or test, or getting them to listen to them about their child.

I have a general distrust for the medical community. I am tired of placing trust and faith in the hands of someone with a white coat and a name tag with “Dr.” Like I said, there are exceptions. I love our family doctor, and I love our pediatrician, but given the sheer number of physicians that we have encountered in 5+ years, we are working on about a 1% success rate.

In our situation it is hard not to be leery of what a doctor says to be true. We had expert neonatologists, flanked by nurse practitioners, and residents who ignored the clinical presentation of jaundice in my son, and to put it bluntly, caused his brain damage. I do however owe his life to an amazing quick thinking OBGYN, so I do give credit where it is due. The reality though is that we have had way more negative experiences than positive, and at times it has been almost too much to handle.

I also know that our experiences pale in comparison to the challenges that other parents have had in getting doctors to listen to them, or have told them worse things about their child’s future. I know a family that was told to consider taking their son off life support in the NICU. They didn’t, and now he is in SK, walks, talks, rides a bike, normal cognition.

Here is a quick list of what we have been told by “experts” over the last 5 years.

-He will never be verbal.

-He doesn’t have Kernicterus, he never had severe jaundice ( Guess again)

-He suffered brain damage from the effects of Twin to Twin Transfusion ( NOPE)

-You can do therapies, but he won’t benefit greatly from them

-He will never benefit from cochlear implants.

-We don’t think he can swallow. ( Have you seen my kid eat, you need to keep your fingers away from his face or you will lose them)

-He aspirates ( NOPE)

-He doesn’t have pneumonia because he doesn’t have a fever (Happened for every one of his hospitalizations when I insisted them admit him, and then VOILA, the xray confirms serious pneumonia in his lungs)

This doesn’t list all of the future predictions about this physical abilities, but that would be a WAY longer list.

I love when I have ER doctors tell me there is no way he could have Kernicterus. “Have you ever seen a kid with Kernicterus Dr. Knowitall?” ” Well, no I haven’t because kids don’t get Kernicterus anymore.” REALLY? Get your head out of your ass, and you will see one sitting in front of you. He is sitting in a wheelchair because of the athetoid CP, and wearing cochlear implants because of the Auditory Neuropathy. Take a look at his teeth and you will see the dental issues, and here, look at his MRI, which shows damage to his basal ganglia, consistent with Kernicterus. What do you say now smart guy? Oh, and you are an ER doc, not a neurologist or even a pediatrician. Go sew up someone’s cut finger, or put on a cast on a kid or something, and get me someone who can help, and stop arguing with me before I slap you, and get hauled out of here by security.

It is this type of ignorance that has caused a re-emergence of jaundice and subsequent cases of Kernicterus.

“Maclain will never be verbal” which translates to “We will concede, and give him a cochlear implant to basically shut you up Mrs. Agnew, but do not expect much”. Oh, ok, Dr.Bigshot. Come on over to my place and you can listen to Maclain ask for his favourite food, movie, book, and he will tell you all the colours of the rainbow, count to 40, say please and thank you, and then ask you to give him a bath and take him for a walk. Maybe I will tell him to tell you where to go next time he sees you. How is that for not being verbal? And for your information Dr. Bigshot, we didn’t want the implant so he would be verbal, but so that he could HEAR! But you go ahead and give all those implants out to the perfect candidates who only present with a profound hearing loss caused by genetic factors, or use of antibiotics. Don’t worry about our kids with multiple challenges, who could benefit from this technology to improve their lives in an area where you could really make a difference. Why “waste” such expensive equipment on a kid in a wheelchair with limited mobility, and poor head control. And make sure you forget all the success stories of kids like Maclain who have done amazingly well, so that when the next child with physical or cognitive disabilities comes along, you will make their fight just as hard.

“Why would we give him a neuro follow up and schedule an MRI? Even if it shows something, it won’t change anything’. UM. HUH? If a kid has a suspected broken leg, they do an x-ray. If they have poop issues, they see a GI and get a scope. If they have an issue with their kidney they get an endocrinologist, and have some testing done.  But if he has a BROKEN BRAIN, you don’t think he needs to see a BRAIN specialist, and maybe get an xray of his BRAIN? And if the damage is done, and can’t be changed, you can still give parents an answer, and something we like to call closure. And in our case, it showed that Maclain’s brain damage was caused by something that could have been prevented, giving us an opportunity to investigate further. I would say that is kind of a big deal. As they used to say in the Bionic Man ” We have the technology” ( Sorry, I am dating myself there)

If I could sit all the doctors down and have at them, this is what I would say.

“Here is the thing. YOU DON’T KNOW EVERYTHING. I am his MOTHER. I birthed him. I know him better than you ever will. I KNOW more about his condition than you do because it is ALL I read about, think about and research. I am not oblivious to his limitations, and I am not unrealistic about my goals for him. I am not making stuff up. If I could meet you in a dark alley, I would let my inner ninja go crazy on you. I have every right to question you, and I have every right to ask you to do more. Please let your ego go, and maybe you will learn something. This is my child. He means something. You took an oath, so why don’t you try to live up to it.  I am not saying that being a physician is easy, but you chose to be in this field. I like to think it wasn’t only for fortune and fame. I want you to listen, and try to help. Don’t be condescending and rude, and don’t make me feel stupid. Be honest without being mean, and don’t comment on things you know nothing about. Surprise, you are not perfect. None of us are. Despite lots of fancy degrees on the wall, and letters behind our names, we all make mistakes. But don’t make a mistake with my child because you were being ignorant and cocky.  And LEARN from my child, so you remember, and then when the next child comes along you won’t make things as hard on the next family. And every child is different. DIFFERENT. And special. Very special. Be honoured that you have a chance to help a child who needs it.

 

“We worry about what a child will become tomorrow, yet we forget that he is someone today.”
Stacia Tauscher

All access pass?

I have to come to appreciate lately that while you can make a building accessible, you can’t make the minds of the people in the building accessible.

Over the past few weeks, Maclain and I have had various issues with accessibility. We have had trouble getting into a bowling alley, restaurant, and a large well known bookstore. The bookstore was perhaps the most frustrating of the three because their automatic accessible doors at the front of the store, gave the initial impression of an overall accessibility. Once inside however, we realized that the children’s book section was on the second floor, for which there was no way up other than an escalator. I won’t lie and say I wasn’t a tad bit furious, and I know that I will not ever go back there again, but what saved the day was the efforts of the staff inside the store to meet our needs. I was fuming, and Maclain was starting to cry as I told him we would have to leave because there weren’t any books for him there. We had a staff member approach to ask if she could help. I said we couldn’t get upstairs, and that we would have to leave. She apologized for an accessibility issue that was not her fault, which I really appreciated, and then she said, ” well, if he can’t go up to see the books, then I will bring the books down to see him”. She asked what he liked, and she proceeced to make multiple trips upstairs to load a basket with every Cars, Dora, Backyardigans, and Mickey Mouse books she could find. We found a spot to sit, and we took the next hour and a bit to go through all the books until he found one he wanted. She could very easily have allowed us to leave the store in a huff, but instead, she chose to find a way to make the books accessible to Maclain.

This was also the case at the bowling alley that we went to last week. We were so excited to participate in a birthday party with one of Maclain’s classmates from school, and the fact that he loves to bowl made it even more fun. My enthusiasm was quickly erased when we got to the alley, and saw that it was upstairs, about 2 flights up, with no elevator. I felt even worse for the mom of the birthday girl, who when booking the place, didn’t even think about the accessiblity. And I didn’t blame her, it was a totally natural oversight when you don’t normally have to consider such issues. And to make it more of a challenge, we couldn’t even get him to the lanes, because the benches were too close together to wheel him through. But again, despite these obvious barriers, everyone rallied, and we lifted him up in his chair to get him to the alley, and to the lanes. Once the kids swarmed him, and the parents welcomed us, the challenges of getting there were forgotten. It became very clear to me, that while physical barriers can make things so very frustrating and difficult, they are more easily overcome than the invisible barriers that exist.

Here is the flip side to the accessibility issue. We had another community trip last week to a botanical garden. I took Maclain to see a Dinosaur exhibit, just the 2 of us, while his brother was at hockey camp. I was looking forward to an easy day. The place is totally accessible, and as his companion, my admission was free. I packed up our stuff, and off we went. We had no problem parking, and of course we could make our way around via ramps and elevators. There was one area in the greenhouse that we couldn’t get to, but it was ok, because it was nothing we really wanted to see, and it was an area that could not be made accessible to a wheelchair because of the slope of the grade.

We tooled around and checked out all the stuff. We roared at the dinosaurs, and touched all the things that could be touched. I was in a little bit of a happy place because most of our day trips are not without their struggles. It was for this reason that the attitudes of the staff totally caught me off guard.

After we were asked to move the wheelchair out of the way in the gift shop so other people could get in even though we were still looking, and then given a scolded look when we moved some chairs aside to make room at a table in the restaurant, I started to get my back up a bit. That was twice, and I was trying to remain optimistic that there wouldn’t be a third.

We went to find a place to sit for the reptile show that was going to start in a half hour or so. I found us a spot off to the side, because that was the only place Maclain could go and still be able to see everything like the other kids. At first one of the employees suggested we take a place up where the older people could sit, so that the wheelchair wouldn’t run over any of the kids feet. I politely declined, and had to stop myself from running over her feet. I decided to stay where we were, it was a good spot to see the show. I did manage to stifle a laugh when Maclain started to kick some of the kids that has decided to take up residence right in front of his chair, after their mom, who was late to the show, told them to squeeze in front of the wheelchair, because he could see over their heads. Sorry to say, that I didn’t tell him to stop the kicking, and the kids decided to squeeze in somewhere else 🙂

We got all settled in and I figured we were good to go. That was of course until the people putting on the show thought that the place for the upright easel was right in front of Maclain, which blocked his view of the stage area. I asked them to move it, and was told that was the only place for it. I didn’t say out loud that I could think of another place they could stick their easel, So I then said, “well, this is the only place for the 5 year old in the wheelchair, so find another place for the easel”. They gave Maclain a pitied look, and moved it.

The show starts, and the translator ( it was French day, lucky us) decides to stand in front of Maclain. COME ON, REALLY??? So right as he is talking to the crowd, I walk up and ask him to move, so Maclain can see. Didn’t we just go over this? He moves back, and now Maclain is grinning from ear to ear in anticipation of the animals coming. Until the guy doing the show decides to only show the animals to the kids sitting right up front. OK, NOW I AM GETTING MAD! How can you not see my son in his orange tiger stripped wheelchair, with his headband and cochlear implants? He does not really blend in with the crowd. So, up I go again, in the middle of the presentation, and ask him to PLEASE show the animals to the side of the stage area. Finally, they light goes on, and they start to realize that Maclain cannot see what is happening, and they begin to respond accordingly. He was thrilled and loved it, and I was happy to see him having so much fun, but I could not get over what a hassle this had been. The building was totally accessible, this should have been a trouble free, easy, day. But it was those invisible barriers that I could not see, and couldn’t prepare for that almost ruined our day. It was more than wood, and bricks, and ramps and doors. It was the inability of people to make their minds accessible to the needs of people with a disability.

The reality is that there are many buildings and locations that need to be modified to meet the needs of the physically disabled. The government is working to make that happen with initiatives like the one here in Ontario, Accessibility for Ontarians with Disabilities Act(AODA). I remain hopeful that one day the majority of places in this world will be accessible.

But what legislation can we pass that will make the minds of able bodied people barrier free? How do we address attitudinal barriers? I know this is a common question for which there are many answers, and I am not the first, nor will I be the last to ask it. It is just one more thing for me, as the parent of a special needs child, to try to work through. I will continue to provide ongoing communication, education, exposure, and advocacy,  and hope that we can make a change to people’s thinking one person at a time.

The one thing I will not do is let either visible or invisible prevent us from participating in the world, so buck up people, we are coming in!

Hey Maclain, you wanna play?

This year Maclain started SK. It is his first year in the school system. We had such a great thing going at preschool, I was afraid to mess with it. However despite all of my initial fears, and misgivings, it has been a really fantastic experience for both Maclain and myself. This post isn’t going to be about our specific school experience, that may be for another time, but I do want to write about one aspect of his SK life.
I was sitting in an IEP meeting in January, and we were talking through goals and strategies. We started talking about social skills, and his friends at school, and how amazing the kids have been with him this year. I have seen first hand how genuine the kids are when they interact with Maclain, and how much they want to help him, and spend time with him. He know them now all by name, and they get so excited when he does something, or says a new word, or knocks down the tall towers they build for him.
His teacher shared with me something that had recently unfolded with one of the students in the class. She started to tell me about one day when Maclain and another boy were the first ones finished their tasks. She suggested to this little boy, who I will call “Johnny”, that he could do something with Maclain on the carpet. Well, I guess the boy looked at her, looked over at Maclain, and walked away. She stopped him, asked him again if he would like to play with Maclain, and again he turned his back on Maclain and walked away. As she was telling me she was quite upset, and she felt that she could have done more to get this boy to play with Maclain.
As I listened, I started to think about how this was something that I had always worried about when he got to school. In some of my insomnia filled nights, I would have visions of him sitting in his wheelchair in a corner, all alone. He has so many amazing, funny, thoughtful, and caring friends with special needs, and the worries of him making friends with typical kids scared the heck out of me.
So far though, he has made many friends at school this year, even being invited to bday parties and playdates and I have been so relieved.. I still of course worry about things when he gets older, and kids get meaner, but when I look at how our friends kids are with Maclain, as the years go by, it still warms my heart.

In my quest for Maclain to be accepted, and to be treated as a “typical” 5 year old, I had somewhere thought that he should be embraced and loved by every kid he ever met. Why wouldn’t they all want to play with him, and spend time with him.? He is the bomb.
And then it hit me, that this is what ALL parents want for their kids. Special needs or otherwise. I have always wanted the same for Chase. The reality though is that not all kids like all kids. They develop some friendships that are closer than others. They find something about their friends that attracts them to each other, and the relationships evolve. Chase is not friends with EVERY kid he knows, and as long as he is not mean, or does not go out of his way to leave someone out, I am happy. I do what I can to help him foster these friendships through playdates, and birthday party invites. I suggest he branch out at times and maybe get to know other kids as well, but I never force it. I want him to spend time with who he wants to spend time with, because they have common likes, and they bring value to each other.
Its not about quantity, its about quality.

I don’t want any kids to ever be forced to play with Maclain. I will do what I can, like I do for Chase, to foster and encourage the friendships he has. I will ensure that his EA, and teacher, always provide opportunities for kids to play with him and visa versa. I will talk to the parents, and answer questions when they are asked, and offer tips for how they can all play together. Maclain is a great kid, and other kids will know that, and they will want to spend time with him.

I have to be real as well, and I have to factor in that just like any relationships, friendships take work. And it is a little more work being friends with Maclain. Not because he isn’t friendly and fun, but because sometimes play can be one-sided, and you need to help him with a lot of tasks. There is also the ever looming adult that needs to help him with eating and self help stuff. In general, kids don’t like anything that is too much work. Neither do some adults to be honest. And so I know for some kids, they will only see the hurdles and not the rewards.
I believe in my heart though that some kids will see the rewards of what Maclain can offer. And they will not see being with him as work. They will value their friendship with him, and be excited to spend time with him. They will grow with him, and learn with him, and hopefully one day 30 years down the road they will be vacationing together, while I babysit his kids.

“I call it getting tricked by business”

There is a song out on the airwaves right now called ” Thrift Shop” and I love it. For anyone who knows me, it is totally my kind of song. There is a part of the song where he talks about paying $50.00 for a T-shirt. And after doing some simple addition, he determines he is being tricked by business.

Definition of Price Gouging:
“pricing above the market price, when no alternative retailer is available”

One of the nice things about living in a country like Canada is that we have choices, and as consumers, we have options on what we buy, where we buy it, and what we pay for it.

EXCEPT when you have a child with special needs and you have to get them equipment, or products that are not available at your local Toys R Us, or Wal-Mart.
I will concede that there are certain products and services in our lives that we wish were cheaper, and that we don’t have much control over when it comes to pricing. Gas is an example. We have no control over the pricing, true, but we do have control over the kind of car we buy or how we drive the vehicle, so we can maximize fuel economy.
I’m a fan of designer purses, they are my personal weakness. I know they are overpriced, and that the materials used are not much different than those used in less expensive handbags. I am paying for the name. But I know that, and I understand that, and if I couldn’t afford one, there are other options out there for carrying my wallet and sunglasses.

When I have to buy a stroller, wheelchair, floor seater, bath chair etc etc for Maclain, I have no choices. Sure, I can pick my vendor, and I can pick my colour of item, and I can pick accessories, but that’s it. By the way, the vendors all work together, that’s important to note. There is no shopping around, there are no sales. I can’t use a coupon, and you will never see any of these items on Wag Jag. They don’t have a Motion Specialties outlet in Buffalo. Oh, if only there was a medical supply and equipment section at Costco.

I understand that some items are going to be high end and are going to cost a lot. A wheelchair is not a cheap thing. But $16,000 for a manual wheelchair? It doesn’t even have a friggin engine! You can buy a CAR for less money!
And don’t start with the nonsense about how the government helps with the cost. I still have to pay 25% of the total, and that’s IF it is an item that is eligible for government subsidy. AND because the government assumes a portion of the cost, the vendors actually charge more. Vendors love to say things like ” I’m sure Insurance will cover it, or ADP covers most of it, or you can always try Easter Seals” How about if between you and the manufacturer, you didn’t jack up the costs so much? Then we could maybe pay for things without having to fight insurance companies, or scramble to get on wait lists with charitable organizations.

I want to know why a bike for Chase costs $200.00, but a bike for Maclain costs $6000.00? Why a special needs bike trailer is 3 times the price of the one you can buy at Canadian Tire. Why high end runners for Chase cost about $80.00, but shoes for Maclain cost $240.00. It is because they can charge that much, because they know we have no options. .
We have a floor sitter that has about the same amount of materials in it as a chair from Ikea. But ours costs a thousand dollars, and theirs costs $149.00, AND you can get ice cream and meatballs when you go shopping for the Ikea chair.
I would also LOVE to know why I can buy the same products in the US for half the price? I can’t of course have them shipped here, because the manufacturer has sewn up some deal with a vendor here, who is going to rake us over the coals, but if I have a way of getting it shipped to a friend south of the border, I am home free!
But really? Half the price?

You should be ashamed of yourselves.

There is an amazing place in Niagara called For The Needy Not The Greedy. I love that name. They have a warehouse where they receive donated medical equipment for adults and kids. They use volunteers to fix the stuff up, and then make it available for free to children who need it, and charge adults a nominal fee. It is amazing. And you can tell they love being able to help people. We have donated a few items there, and grabbed up a walker. It is a perfect solution for many families.
I asked them if they get spare parts, or old discontinued stuff from the other equipment vendors. They laughed. Not only do the well known, getting rich off of us vendors not help them out, they bad mouth them. Why? Because they consider them competition. Brutal. These vendors are making cash hand over fist, but they are worried about a mom and pop charitable operation that gives away refurbished equipment to people who really need help.. They must be worried that instead of making $10,000 off me this year, they will only make $9000.00.

I’m all about fairness. We have so much to deal with already with our kids, and everything that comes with being on this journey. It would be so great to be treated with fairness. I know business is business, and its all about the mighty buck, but maybe think about the consumers that you are ripping off. Give us a break once in a while.

I call it getting tricked by business.

Blame it on the rain

“Blame is where we try to park our grief.” ~ Leland R. Beaumont

Blame. It is almost second nature. As instinctive as breathing. When things go wrong, the first impluse we seem to have, is to place blame. It might be on ourselves, or it might be on someone else. It may even be placed on an animal, or an inanimate object. It is just an automatic response for most people. I do it all the time, especially when I am having a bad day. If something does not go the way I think it should, or if there is a problem, or things are messed up. I look for someone to blame. No one is immune to it when I get on a role. I have to actually stop myself before the blaming process begins.

When Maclain was born, I blamed myself very heavily for a long time. It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night. I knew in my practical mind that none of it was my fault, but I had to blame someone.

A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his CP and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been as a result of any intrauterine insults, or because of the Twin to Twin Transfusion. I held in my hand, a document that was resolving me of any blame. I remember crying hysterically in my car, at the mailbox, with Maclain in the backseat. I called my husband, and my parents, and wailed to them that it wasn’t my fault. I was so angry that I had been made to feel by all the medical professionals, that my son had disabilites because of something I had done wrong. I think I cried for a week at least.
So why then didn’t I feel better? It wasn’t because of me, the blame was clearly on someone else. My friends commented that I must be so happy to know that it was nothing that I had done. But I wasn’t happy. I realized it was because regardless of who held the blame for what had happened, it did not change the fact that my beautiful baby boy had significant cerebral palsy, and was profoundly deaf. It didn’t mean that we were going to shoot back in time, and everything would be fixed. Even if we were to one day get an admission of guilt from the medical community involved, it would not take away Maclain’s disabilities.
In my quest to come to terms with how things have played out in my life, I have changed many things. I pick my battles wisely. I pool my resources. I only take on what I think I can handle, and I put to the side things that I can deal with another day. I no longer trust someone just because they wear a white coat, and their name tag says Doctor. I don’t take no for an answer. I try to take the negatives and turn them into something positive that will help other families. I do not blame myself for things I could have done differently, and I do not blame myself because I could have done more. I also try not to blame anyone for the big problems we face in our life. I have enough on my to-do list, I am not going to add finding people to blame to my list.