Why the Upsee was an Oopsie for us….

Let me first say this so I don’t get anyone upset! Every child is different, as are their needs, their disability, their families. I commend all parents who have the openess in their minds to seek out therapies, equipment, treatments and life experiences that they believe will enhance the world of their child with special needs.

Ok! Having that out of the way, I want to talk about our latest experience, and why I wanted to write about it.

The Upsee. For those of you who have never heard of it, here is a link to their site. http://www.fireflyfriends.com/upsee

This is a walking aid that was invented by a mother of a son with Cerebral Palsy. It hit the market a few weeks ago, and has been all that the special needs world can talk about. Their videos have gone viral, and it has been big news on both sides of the pond.

When I first saw it, I immediately said, ” I have to have that for Maclain”. I HAVE TO HAVE THAT!
I was mesmorized by the videos and photos of children standing upright and essentially walking with their parents via a supportive vest and straps. I right away thought about all the countless times that we have held Maclain under his arms as we walk with him around the house in short spurts, or walk him up and down the stairs. My kid loves to walk. He loves to be in his walker, upright. He loves to explore his world, move, feel free.
Seeing that product stired me up again the way I used to be when Maclain was first diagnosed. I would scour the web for products that would help Maclain to sit, or lift his head, or walk, eat, drink, sleep, and the list goes on. And with every new discovery, I would get hyper and excited, and email my husband the links and start to envision the possibilities. And this is exactly what happened when the upsee was introduced to the world.
I have always been a buy and try person, so I was already figuring out how quickly I could buy this for Maclain.

At the same time as all this calculating was going on in my head, I had friends that were using the upsee and loving it, and even our amazing PT had sent me a message to ask if I had seen it, and that she thought it might work for Mac. And as I excitedly texted her back, that yes, I think it would be perfect for him, she responded that we for sure should try it before I buy one. This is why I love her. She gets just as revved up, and is so supportive of trying new things, but she is also so great about her realistic approach. So I agreed, that yes, we should try it first. But I wasn’t worried, after seeing all the videos, and pictures, and reading the testimonials, this was going to be a slam dunk. I would be ordering the Upsee for sure. But maybe I will hold off a week until we try it first. And then I started to think about whether this was going to actually work for Maclain. I liken it to that moment when you really want to buy a new purse, sweater, patio set, tv, and the person with you says ” Are you sure? Do you really need this? Will it fit? Will you actually use it? Can you afford it? Can you live without it?” It made me start to think about the possible downsides.

So I was fortunate enough to borrow one from one of my besties, Dana, who had a wonderful experience with her daughter Taylor in it, dancing up a storm.

I waited until just the right time, which happened to be Friday night after dinner, while the kids were playing outside and the weather was nice. I got everything all laid out, and read the instructions and then started the process. And here is how our experience went.

1) It took 2 people not including me to get Mac into it. He is tall, he is very low toned, and he also has alot of uncontrolled movements. This is not a one person job, at least not in our case.

2) It was very difficult to ensure that he was strapped in properly. I can’t imagine how it would be for a chid who had hip or pelvic issues. We did the best we could, and I was ok with it because it would only be for a short period. I cannot imagine buying the Upsee without trying it, and then taking it to a PT to make sure that the child is using it correctly. I read the instructions, watched the video, got prepared. I still think that he wasn’t fitting in it properly. This is also the problem with signifiant low tone in the neck, shoulders and trunk.

3) Standing up with a child strapped to you, and your feet strapped together isn’t the easiest thing in the world.

4) Again Maclain is very low toned. With poor head control. And is very tall. And getting heavy. When he wasn’t bearing weight, he would sink into the harness. This hurt me because the full weight of his body would pull me down and the straps would dig into me. And it left red marks on him from when he was just hanging. His head hung down the whole time. In his walker, his head is up and looking around, and he is so engaged in his world. The upsee did not provide him with the support he need to keep his head up.

5) For us, it was not hands free. I had to hold him up at the shoulder straps to give him the support he needed. Even with the straps tightened. And this was the only way to keep the straps from digging into me when he slumped.

6) He did not take steps the way I thought he would. He relied on me to do all the walking. Which was the total oppostie of how he is in his walker. In his walker, he zooms, and runs, and is free, and does it all by himself. Even if he has no directional control, it is totally “independant”. I actually had a moment where I felt that I was taking away the indepenance that we had worked so hard to get him. And when I stopped to take a break, and he wanted more, he had to rely on me to keep walking for him. Without offending anyone, this is coming from someone who has a child that needs a wheelchair for his mobility for 90% of the time, I cannot imagine why if your child is proficient with their walker, you would want to put them in an Upsee. I feel like that is a step back. Its like putting a child back in a carrier after they are able to walk well enough and long enough and dont need to be carried anymore. And with Maclain being on the bigger side of the available sizes, if he loved it, and then in a year couldn’t use one anymore, he would be beside himself.

7) I tripped and almost fell, and I thought I was going to puke. My stomach jumped into my throat. And I then started to think about that. What would happen if you lost balance, or tripped. With him strapped to me?

8) My kid who loves to walk, cries when he isn’t in his walker enough, wants to be with the other kids doing stuff, asked to be “out” of the upsee after 15 minutes. And each time I asked him if he wanted to use it again he said “No” and pouted.

I have to tell you. I wanted to cry. It brought back all those feelings that I used to get when I would try something on Maclain thiking it was going to be amazing, and it wasn’t. I felt again like he was so different. Even different  than all those other kids with CP who were having the time of their lives in the Upsee.

I took a deep breath, and reminded myself that we were going to be trying it with our PT, and that maybe I had done it all wrong, and it was still going to be an option for him. We took him there yesterday, and the experience was the same, but now it was also with someone else, and someone that knows Maclain very well, and knows me very well. The experience was almost identical. We just couldn’t find the justification for spending almost $500.00 on something that Maclain couldn’t really use effectively, and that I had so many reservations about. I won’t lie and say I am not disappointed, but now that I have had a chance to let the hype die down, and really took the time to assess it, and try it, I know that not getting one for him is the right decision. I think if we ended up buying one, I would get upset everytime we tried it, because the outcome would be the same. And my reasons for being hesitant will not change.

I am happy for those parents and children who have had a great experience, and love it. And I hope they continue to enjoy using it! But for those parents who are on the fence about it, I would encourage you to really think it through, and not just get caught up with all the excitement, and try to try before you buy. $500.00 is alot of money for us parents who have children with special needs. Don’t feel that you have to get one because everyone else seems to be getting one. Also remember that most of the parents and children using them, have been given them for free as part of the initial marketing plan, so there was no risk it trying it out. I also worry about the quest to make our kids walk. There was even inferrence in the webinars that kids in wheelchairs can’t get out in the community the way a child in an Upsee could, and I took a bit of an exception to that. Maclain sees the world just fine. And misses out on very very little. I also cringed at the suggestions that the device could change the severity of a child’s condition and actually move them from a child with quadrapalegic CP, to diplegic. Not that I am saying that those functional classifications, and diganosis can’t change, I love it when doctors are wrong. But it won’t just be becauase Johnny was using his Upsee. And for many parents who are at “That” point in the early days, hearing these claims can be something to grab onto.

So, I find myself another experience richer, having held on to my $500.00 for the next thing that I may want to try, and reminded once again that one size does not fit all.

 

 

 

Let’s get ready to rumble

The week before last was bullying prevention week. A lot of effort was put into bringing awareness to the issues around bullying specifically in our schools today. It breaks my heart hearing the stories about kids who are emotionally, physically and verbally abused by their peers.
I attended a number of events hoping to learn more about the specific triggers and techniques used to control the incidents, hoping that neither of my boys are ever involved in a bullying situation. While I sat back and listened to some of the presentations as they were going on, and as experts described the ways that children were often intimidated and left feeling scared and anxious and unable to fight back or speak up and be heard I couldn’t help but notice the similarities between those children and what happens to special-needs parents.
We aren’t subjected to any physical abuse, but the emotional toll can be significant, and the verbal abuse can be harsh.
I listened to these educators lecture on how to prevent bullying, and how to deal with children who bully or are being bullied, and yet everyday I hear about another parent fighting the school system and getting bullied by the very school board and school administration that is conducting the seminars.
When you become a special-needs parent almost immediately you adopt a fight or flight mentality. Some parents come out of the gate fighting, frothing at the mouth, ready to engage in battle. Other parents completely overwhelmed by their situation feel that they can’t handle everything and they retreat back as their best means for survival. In all honesty I don’t think either one can be overly effective, I think we all need to find a balance between the two.
But what makes finding this balance so difficult is that from the moment our children are born, or diagnosed, we encounter bullying in a lot of different ways as we try to get our kids what they need. And even those parents who are up for a constant fight, cannot withstand the never ending flow of bullies that they come up against.
I know that the word bully may seem extreme, but truly when you look at the way that they treat these parents, I really can’t think of any other way to describe it.

How many of us have been intimidated by the medical staff that we interact with when our children are initially diagnosed? Doctors who won’t listen when we say this is not normal, doesn’t look right. Doctors who tell us either there’s nothing wrong with out child, and that we are just being an overly nervous mother, or those physicians who have us believing that our kids will never amount to anything, will never walk or talk, and will never be productive members of society. Doctors who tried to bully our family into believing that Maclain did not have kernicterus, who would rather try to blame me for what happened. Doctors who talk down to us, intimidate us, and make us doubt ourselves. Who leave us feeling scared, anxious, picked on.
I have heard recently of two separate situations where parents of a special-needs child have given birth to their second child and have had concern with their baby having possible jaundice. But when they tried to ask about it, they are dismissed or they tell their them to go and put their baby under the window. Really? A window? Is this 1950? Let’s remember that jaundice can lead to brain damage, resulting in a condition known as kernicterus which is 100% preventable. These two mothers are now aware of the dangers of jaundice because they have met families like ours who have a child who has been affected by untreated jaundice. And so on with that knowledge they bring their concerns forward to the doctors and the hospital staff, but nobody wants to listen. And so these parents persevere even though this is an emotional time for them and these mothers are exhausted after having gone through labor but they know that something isn’t right. And guess what? Those babies required reading hospitalization so they could go under the lights to treat her jaundice. Why does this happen? And if these two mothers did not know any better, they would have been too intimidated by the reactions of the medical staff to push this issue any further. It all comes down to the fact that those staff believe that they know more and that these mothers have no idea what they are talking about and they often time make them feel stupid for asking the question. Sounds like classic bullying to me.

There have been therapists, caseworkers, nurses, secretaries, CCAC workers, government employees, who have all felt the need to be rude and pushy and mean to one or all of us at some point. And I wish that I was exaggerating, but I can pretty much guarantee that if you were to poll a hundred special-need parents the majority of us would feel the same way that I do. These people telling us that our children were not deserving, did not need, would never amount to. That we didn’t know what we were talking about, that we didn’t do the paperwork properly, that we’re not the only ones who needed help so why should we think we’re any different than the hundreds of other parents that they talk to. They tell us they have been seeing kids like ours since before Christ was born and they can tell us with certainty the things that they will never do, but if we want to go ahead and keep on fooling ourselves well that’s for us to decide. Sometimes they were brash about it, sometimes they were passing aggressive about it, but every single time they were bullies about it.

Parents who have children in the school system who can’t get what they need for their children. Who know what their rights are, but they have to fight for them? Those school staff and administrators know exactly what the law says, and yet act like a big bully and intimidate the parents constantly. They create unnecessary problems for these families who are only trying to make sure that their children get the same education as every other child. The school boards have policies and regulations specifics to special education, and yet nobody wants to adhere to those when it doesn’t work for them. And they make these parents spend endless hours and precious energy finding the documentation to support their fight, when the school board already knows that the documentation exists. They argue with parents about the children and tell them that their kids are not smart enough to participate in a regular class, or there aren’t enough resources to support their needs. They puff up their chests, and crowd the round table with their peeps and push us into lockers. The attitude is very much like “what are you going to do about it”.
Why does it happen? Is it that there are just professionals out in this world that need a boost of your ego? Where they picked on his kids and they feel the need to get back at people? On a power trip? Do they get a kick out of making people cry? How can you just standby knowing that children are not being toileted, are not having the opportunity to get their daily physical exercise as required by law, are not being included with their peers out on the school ground. How do you sit in your office and ignore the phone calls and emails until we are forced to go and get legal representation or threaten media exposure. Why does it always have to come to that? It’s because you think that if you intimidate us enough that we will back down, that’s what you’re betting on it. How about dear principal, teacher, superintendent, or trustee, that I go and yank your kid out of class and not let them go to the bathroom, not let them have their lunch on time, not let them play with the other kids, not let them learn the curriculum and basically not give them the educational experience that they have every right to have. Would that make you feel differently about the way you treated our kids and our families?
A lot of the time these individuals show the classic signs and traits of someone who is a bully in the schoolyard. I would bet every dollar I had that the people who act like that in the adult life were either bullied as a child or were bullies themselves and for whatever reason they feel the need to continue that trend.
Well I’m here to tell you, that it is not going to continue to happen. Remember that saying the meek shall inherit the earth? Parents are getting more and more confident and knowledgeable and they are connecting with other parents were going to help them fight those fights. We are refusing to continue to be intimidated by people who should be helping our children and our families and not making life more difficult. If you want to be that kind of individual there are other careers out there that you would be better suited for so I suggest that you go-ahead and pursue one of those because your reign is coming to an end.
You may feel now that you have the upper hand, but that is not going to be the way it is in the future. It may not happen today it may not happen this week but we will get what we need for our children and you are going to wish that you had been on our side from the very beginning.
I can’t wait to see who the tough guy will be when all of this is said and done.

Whose side are you on anyways?

So I usually do a little bit of a lead in, or a little bit of a story, before I jump right in to what it is I want to get off my chest or the matter at hand. But this time I am just going to go for it because I am so incensed and upset by the situation that has occurred recently.
I will start off just a little bit by saying that my experience as a special-needs parents has led me to realize that there are realistically few places in our society where our children don’t have to worry about being different, or where they don’t have to try to belong, or have to modify the way they do things so that they can feel included. One would think if using the rational brain that a children’s treatment center would be one of these places. We all know that in general many of the treatment centers can be a source of frustration for the families of the children who are clients. And this can be for a variety of reasons, everything from the personalities of the therapists that they are working with, the treatment options available, or the intensity of the actual therapy program. Some parents have nothing but a positive experience, some have quite the opposite, and some fall into place in between the two. I would have to say that in our experience we have had great outcomes from our time spent at our local treatment Centre, Erinoakkids,  but we have also been faced with the same challenges that many families before us have also faced. Up until a few months ago I would honestly have said that the good outweighed the bad. With the exception of perhaps one of the therapists that have been on Team Maclain the remainder of the professionals that we have worked with have been extraordinary. I attribute many of Maclain’s successes, especially in the area of speech and language, to the amazing efforts of the AVT and SLP therapists. We have also had wonderful physical and occupational therapists although with Maclain significant physical challenges, we did not achieve as many great results as we did with his hearing and language. I do not however give any of the credit, to the actual organization. Only to the therapists themselves. Our challenges with the organization have left much to be desired in the way of family centered care. I love buzz phrases like that. People relish the concepts, and pride themselves on putting the slogans up on their wall, but very few can actually deliver a true family centered program.

We recently had an upsetting experience, and I felt that it needed to be highlighted and shared.

A few months back we were at their south millway location, which is just one of their satellite locations. At that particular place, they house many clinics, among them being seating, orthotics, nutrition, and developmental follow up. We are often at this site to see the augmentative communications team, and sometimes the nutrition clinic, and about once a year we go for seating. Lately, our visits have ramped up because we have been doing a lot with Maclain’s communication devices, and he is being fitted for a power wheelchair.

We were pleasantly surprised one day when we walked in and saw that the waiting room had been overhauled. After inquiring, I learned that another foundation had donated the space, complete with new ipads and touchscreen video games. What I great idea I thought immediately, perfect for the kids who have to wait for what is not always a nice visit, and great for the parents, who would rather be anywhere then sitting with their child waiting for yet another therapy appointment or orthotic fitting.  Maclain right away zeroed in on the fun looking electronics, and asked to play. So I happily wheeled him up, and then realized that he could not fit under the table. He also couldn’t reach them from the side because they were too far back. I figured that maybe I needed to sit him more upright, which I did, but again, to no avail. I was shocked? I quickly asked anyone and everyone who I came into contact with, if they knew there was a problem with accessibility? I was told that yes, they were aware, and that they were having internal discussions about what could be done to fix things. Ok, I calmed down a bit, and although still irritated, I was pleased to hear that they were going to find a solution. How it even came to be that the waiting area was revamped in the first place and allowed to be opened with accessibility issues was beyond me, but if they were going to fix it, I would let it go.

As with most things related to my special needs parenting experience, I tend to go to the other parents to see if they have had similar experiences, and to garner their advice. And just as I expected, we were not the only ones who were troubled by the accessibility issue at that location. I also found out that other parents had too made inquiries and were told the same thing I was.

So fast forward a few months, and we have returned for another appointment, and to my dismay, no changes have been made. Now, I am getting mad. I again inquire about what is going on, and find out other parents have also done the same, and this time we are told that they did investigate and there is nothing they can do, and that they will consider this a lesson learned. Um, excuse me? A lesson learned? So, it is ok that the kids at this site can’t all access the great new electronics in your waiting room, and you will make sure that your new location doesn’t have the same problem? Oh, and important to note that no one from the organization willingly notified any of us who had complained about their decision to leave things as they are. We had to go back and ask them. I asked why they weren’t just proactive and maybe use social media as a way of highlighting the concerns, and then posting some politically correct answer, but at least publically acknowledging their error. I was told that if they did that, they would be opening up a can of worms because other parents would find out, or start complaining. I see then, it is better to hide and hope it goes away?

After escalating the concern to the communications department, who never bothered to respond to me directly, but rather just forwarded off my email to their best trained public speaker, I am told that 95 percent of the kids can access it. And while that is still not perfect, it is pretty good right? No, wrong. And I also highly doubt their 95%, especially when they told me that they did not consider kids using walkers when they did their initial assessment. What? You are a treatment centre and you didn’t consider kids in walkers? And you also are telling me that my son is pretty much the only kid in a wheelchair that can’t access the stuff?  And then you directed me to check out the amazing photos of their grand opening launch. Oh, look, not one kid in a wheelchair. Weird. But you are willing to make Ipads available for those kids who are left out, and they can sign them out and use them while they are waiting? So they can do that while they watch the other kids using all the cool other stuff? How is that fair? How does a children’s treatment centre even think about having a two tiered system of access?  You walk and don’t need equipment, so you can use the new stuff, but you over there in the wheelchair, you need to use this Ipad.  And do you really think you can police a program like that? And when the loaner Ipads break or get stolen, you will just replace them? I don’t think so. How would the foundation that made the donation feel about that? There was a nice big write up in the local paper about a joint fundraiser they were doing so they could continue to revamp the waiting rooms and make them a fun place for kids. I had to physically stop myself from opening my front door and yelling out at the top of my lungs

I asked them what input their family advisory council had in the decisions. Guess what? They don’t have one. Shocker.  They used to, but now they said they don’t have any clinicians willing to give the time to sit on a joint council. But was I aware of their comments box? Oh, you mean the comments box that no one uses, that looks like it was made in 1975, people put used tissues in it, and is a totally one sided way of communicating? I will pass thank you.

As if you had to guess, this fight is not over. It has only just begun, and it will not go away. It has now reached a point where it will be escalated to the people at the top, and more parents have joined to get this righted. Sad though, that with all the fights we face, and all the challenges we have, that we have to go this far to get an accessible waiting area for our kids at a children’s treatment centre. A place that should know first hand what we have to deal with every day in our role as special needs parents. Sad.

No more pencils, no more books……..

Well we did it. We survived the first year of school. Maclain passed with flying colours, and achieved a new milestone as he graduated from SK to Grade 1.

For obvious reasons, I had long dreaded the day that Maclain would have to enter the school system. It was a day that I lost sleep over. A day I didn’t want to think about, couldn’t begin to plan for. It wasn’t that I didn’t think he would love it, I knew he would totally adore going. It wasn’t that I was upset to be without him all day. He has been going solo to programs since he was 2 years old.
It wasn’t because I thought he wasn’t smart enough. He is a very bright, motivated, and engaging child.
It was because I was handing over control to an educational system that has long been flawed. I had to have faith, and believe that all the meetings, plans, promises, and some threats, were going to come together to meet his needs as he entered into a world that is not always renown for how well they treat students with special needs. Especially ones who are so physically involved, and struggle with their verbal skills.
I think back to this time a year ago. So many meetings with too many people around a huge table. All so that one little boy could go to school 3 days a week, for only the mornings. I had decided to continue to send him to 2 days a week at Conductive Education, so I could feel confident that at least on those days, his physical and academic needs would be met.
I was filled with such anxiety, and I was in full on offensive mode. I was ready with files, photos, slideshows, and all the best reports. I was ready to tear off heads and make people cry. I know that I was not the first person to ever be in this situation, but in my world, I was a lone mama wolf heading into the wild and needing to fight for the survival of myself and my wounded offspring.I actually could see my husband cringe when I spoke during the meetings. He had that ” uh-oh, she is going to lose it” look on his face. And I did lose it a few times, and all over the things that seemed to be beyond my control. All the worst parts of the system that don’t seem to ever change were the things that were making me panic. In a bid to gain some control, I demanded tons of equipment, the exact teacher I wanted, the EA type we needed to have, how many PT and OT appointments we should have, and anything else I imagined I should have. I was going to leave nothing to chance.
I cried so many times last summer thinking that I was making a mistake, it was too soon, it would never work. But in my ear I kept hearing the voice of the Principal saying ” Mrs.Agnew, I know this is so hard, and I won’t pretend to know what you are going through. But please try to have faith. We want this to be as successful for Maclain, as we would want for any of our students. We are going to make this work, and it is going to be great”.

So September came, and the equipment was ready, his EA’s were trained, and I took up residence in the classroom. He looked so darn cute in his uniform, and he had a huge smile on his face. It took very little time for the kids to “accept” him, and he quickly made friends, and broke the hearts of all the staff who met him. Our team at the school were consistent with their communication with me, and were always welcoming when I offered help and suggestions. We found ways to make the restrictions of the system work in our favour, find ways to do accurate assessments, and aside from it taking time for them to believe me that he is super smart, we were all on the same page. As the months rolled by, I watched him dress up for the Halloween parade, participate in the Christmas concert, make Easter cards, and excel in his literacy, numeracy, verbal skills, and social awareness. I was actually shocked with myself, at how at ease I had become. It was hard to believe that all the planning had paid off, and things were good, maybe even great. I will never say it was perfect, but nothing is, and I have long since lost the concept of perfect.

When we sat around this table this year. Some faces familiar, some new, and some that will be leaving, I was struck by how different it was. The content of our discussions were more in depth and complicated, and now involved a full day every day school year, but somehow I was calm. They asked me if I would consider letting him be in school for the full 5 days, only doing Conductive Ed on the weekends. I still am not sure how I agreed to that, but I did.
We were not discussing what if’s anymore, we were talking about sure things. I heard excitement in their voices when we talked about implementing writing software, laptops, communciation devices, more time in his walker, potty training, and down the road power wheelchair trials. They were all smiling and beaming when reporting on how amazing the year had been, and how many advances Maclain had made. Even the odd stupid remark from the board SLP about how shocked she was at how smart Maclain was ( She really did say that. She couldn’t believe he knew what a flag was. WTF? She is thankfully not on our team next year) couldn’t damper the positive momentum.

I think I may actually sleep ok this summer, and not be so worried about the countdown to school starting. I am going to stay positive and optmisitic that he is going to have another great year. I am going to for just this once, have a little faith.

But I will have my fangs and claws sharpened, just in case.

Oh Brother

I am an only child. The concept of sibling bond was often lost on me. I could never quite grasp why siblings put up with each other no matter what.
When we had Chase, I knew that while I would have been totally content to have him be an only child, my greater desire was for him to have a sibling, mainly because I never had that.
When we planned on having a second child, nowhere in our planning did we account for getting pregnant with twin boys, losing a twin boy, and having our survivor end up with a significant disability. Chase was only 20 months old when Maclain was born, so he really had no sense of what was happening. He didn’t grasp the concept of Maclain being in the hospital. But from the day we brought Maclain home, Oct 25th, 2007, I have been witness to the natural development of a lifelong sibling bond.
I don’t know if it is because this is the only experience Chase has a a big brother, but his love and devotion for Maclain is deep and unwavering. They adore each other, and their connection is intense. Chase has had to deal with so much being a brother of a special needs sibling. He has endured appointments, therapy sessions, out of town programs, assessments, and numerous pieces of equipment. He has learned how to put Maclain’s implants on his head, feed him his pudding, operate his bath system, and roll him over onto his back without crushing Maclain’s arm. Yes it is true that older siblings are often called upon to fetch diapers, keep the little ones occupied, help with homework, and share toys, but there is a different level of expectation put on the typical sibling. We work really hard to make sure that the demands on Chase are not too great, so that he never resents his brother. We also have made arrangements for the future so that Chase will not have to bear any burdens with caring for Maclain. I hope of course that Chase will want to help ensure that our plans for Maclain’s future are being carried out, and that Maclain is being loved and cared for and happy. I hope they are in each others lives forever. But I don’t want Chase to be responsible for taking care of Maclain. It really gets to me when people say I am lucky that Maclain has a typical brother who will take care of him when we are not around anymore. It also bothers me when people ask why we didn’t have anymore kids so that Chase could have a typical sibling. What should we consider Maclain then, the consolation prize? Sorry about your luck Chase, but you are going to have to make do?

I don’t think anyone has celebrated Maclain’s accomplishments as much as Chase has. He is literally his biggest cheerleader. He involves him in as many activities as he can, and he never gets frustrated with him. They share a bedroom, which was what Chase wanted, so he would be able to watch over his little brother.
He knows Maclain is different, he asks questions that we sometimes don’t have answers to, he wants to know everything about what Maclain’s future will look like. He tells us that he wishes that his brother could walk, but he is true in his words when he says that its ok if he never does. He loves showing him off to his friends, and bragging about the new things Maclain has learned to do.
There are times when he becomes very overwhelmed worrying about how Maclain will get by at school, and camp, and who will take care of him when he is away from me all day. He has spent many nights crying about things that he is too young to worry about, and that weighs heavily on me. I have moments where I feel sorry for him because he doesn’t have a typical brother. And yet, when you ask him, he says he loves Maclain so much, and he says he has the best little brother and wouldn’t want him any other way.
I think what I am most proud of is that Chase not only embraces Maclain and his disabilities, but that he embraces all kinds of kids and people with special needs. He brags about Maclain’s special needs peers just as much as he does about his brother, and he treats them like they are his siblings. He steps up at school to befriend the exceptional students in his class, and he helps the kids at the park when he sees them struggling with walkers, or waiting for the adapted swing.
We were at a hockey game several months back, and a teenager with CP came up on the big screen to promote an Easter Seals telethon. His speech was a bit hard to understand, but of course Chase and I understood every word, we are used to the way Maclain talks. My friend’s son made a comment about the kid talking funny, and not being able to understand what he was saying. Chase immediately turned around and said ” if you make fun of that boy, it is the same as making fun of my brother”. It was the first time that I saw Chase make a connection like that. My heart just about burst open.
I am brought to tears at some point almost every day when I see how much they mean to each other. It makes me realize very quickly that while this wasn’t the way I planned for things to be when I decided to have another child, it is exactly the way is was supposed to be.

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

They 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?

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.

Yep, it was worth it. He is worth it.

 

I have never been one to run from a fight or retreat with my tail between my legs. My nature for good or bad has always been to stand firm in what I believe in, and to stay the course even when my tears betray me, or my knees want to buckle. Never has my resolve been so steadfast as since Maclain was born. It is still incredible to me when I look at how many times I have had to engage in many unwanted and often times unwarranted struggles to get my son the things that he needs or has a right to have. People who know me, know that I am up for any challenge that comes my way, but for the record, I really don’t like to fight for no reason. The truth is that it is exhausting. Mentally, emotionally, and physically it takes it toll. Each situation has different players, with their own agendas and personalities, and just as prepared to go the distance as I am. And more often than not, these are professionals in their fields who have letters behind their name, organizations backing them, and a network of peers who they can rely on for support. It can be intimidating to be up against a system when the system is not designed to meet the needs of a child with special needs. Despite their insistence that they are in fact fully capable of meeting your childs needs. And their claims of seeing it from our side are completely not true. How can you see anything from my side, when you have actually never been on my side? Literally or figuratively. When I lay awake at night, which is often the case, and I replay the events of the day, or week, or month as they pertain to the latest battle that I am facing, sometimes a little voice in my head tells me things that make me second guess myself. When things are particularly hard, and it is a situation that I see no immediate solution in sight, and where I feel to the point of absolute defeat because nothing is going as planned, I jump to thoughts of whether or not I should even be battling? Why can’t I just accept things as they are? Why can’t I just listen to the experts and take their word for it? Am I asking too much? Am I being unreasonable, or unrealistic in my expectations? Am I looking for a fight, where one doesn’t exist, because of some feeling in the pit of my gut? Why do I have to push and push and push to the point of no return with school, and doctors, and treatment centres and insurance companies? It is worth the toll that it takes on my mental state, family relationships, marriage?

Then the other voice pipes up

He has the equipment that he needs because you  fought for it

He has cochlear implants because you fought for them

He is getting a power wheelchair because you fought for it

He has assistive technology because you fought for it

He is getting help finally for his GI issues because you fought for answers

And the list will grow as he grows and things will never just be easy, because life isn’t always easy.

But he will get what he needs because you will fight for it. Because he is your son, and you are his Mom. And you must never forget it, and you must never apologize for it.

“Even if I have to stand alone, I will not be afraid to stand alone. I’m going to fight for you. I’m going to fight for what’s right. I’m going to fight to hold people accountable”  Barbara Boxer

 

 

 

 

 

 

You want him to say what?

I was raised Catholic. Attended Catholic school all the way through. I have completed most of the sacraments, and I am pretty versed in the traditions of the Catholic Church. I believe in organized religion in general, and I believe that faith and the need to pray to a higher being is vastly important to masses of people. Whether they be of my religion or of the many others. I am what you would call a Christmas/Easter Catholic. Not present every Sunday, but was always a fan of the role that my religion played in my upbringing.

When tragedy strikes some people, they either turn to their faith, or they turn away. I fall into the latter. I very much respect every person’s beliefs, and I am actually quite jealous of people who have been able to fall into the safety net of their faith, and embrace the challenges that God has put before them. Me? I have not been able to be one of those people. I still struggle with the question ” Why would God do this?” What did I do so wrong to someone to deserve the wrath of losing a son and then having his brother be left severely disabled. I try to celebrate the blessings that I have in my life, but they are sometimes overshadowed, as I am sure anyone can appreciate.

God and I don’t see eye to eye on a number of things anymore, and I can’t say that we have been BFF’s since Aug 2nd, 2007. One might say that I am a tad jaded.

Regardless of my doubts in  God and his plans, and what has transpired, I know how much I enjoyed being raised as a Catholic, and attending Catholic school and I wanted that for my kids.  My kids are both baptized in the Catholic Church, and now they attend Catholic grade school. It was extremely important for me to have my sons baptized, even more so for Maclain, because of how close we came to losing him. When they turn 18, they can do what they like, but until then, they would be following the same path.

And so as they get older, they start to reach certain milestones in the Church. Chase had a big year in Grade 2 with his First Reconciliation,and then his First Communion, and now it is time for Maclain to do the same.

I attended a mandatory parent meeting at the church a few weeks back, bought the suggested books, and listened to a recap of how the sacraments will proceed on the day of the event. As I sat there, I of course thought about how to make sure that we will need to give Maclain extra prep, and started to formulate in my head a plan to meet with his school team to discuss getting him really ready to participate in the upcoming sacraments. Already looking forward to the party at our house afterwards with the cake shaped like a cross, and gifts of youth bibles and gold crosses.  How exciting this was going to be for Maclain, and how cute would he look in his little suit, with all of his classmates, participating in a religious rite of passage. Towards the end of the session, reference was made to any children who would be completing the sacraments, and had physical, cognitive or learning disabilities, and for us to speak with the church assistant, So I lined up, and started to talk with her about expectations, and accommodations, and she was very lovely about the whole thing. I was focused more on the First Communion part for some reason, but then out of nowhere I asked her about what Maclain would do for his First Reconciliation, aka First Confession. As it must be completed to have your First Communion. It entails saying a prayer to the priest, and then confessing your sins, and then you are given a penance, and then you are free to go. It is absolving you of your current sins. I expressed to the assistant that I was worried about all the words that Maclain would have to memorize, my reluctance to bring his communication device into this situation,  and if he would totally undertand the concept and asked her what they have done in the past with similar students. She was very nice and said not to worry, that all he really needed to be able to say was ” I am sorry Jesus”

And with those 4 words, everything came apart for me. I. Am. Sorry. Jesus.

Excuse me, could you repeat that?

You want this boy, this innocent soul, who has never committed a sin in his life. Who has never lied, or cheated, or bullied, or talked back, or had an ill thought. To apologize? To say I am sorry? To be granted formal forgiveness? For what? What has he ever done to anyone? May God strike me down, but I believe that he is the one owed the apology. He has had his twin brother taken from him, he has been left disabled, he has to struggle so much with so many things and will for the rest of his life, but you want him to apologize to God, in the Church, witnessed by a priest, so that he can be ready to receive the Sacrament of Communion? I have been beside myself ever since that night at the church. How can I just have Maclain apologize, even if just ceremoniously, for sins he has never committed?

Well, its not going to happen. Not on my watch. So unless someone comes up with a better idea, there will be no further sacraments for Maclain. Not in the Catholic Church anyways.

Is any other religion hiring?

When enough is enough

I was reading a post today on one of the groups that I follow on Facebook and it was all centred around a mom who said she can’t do it anymore. She has been parenting her daughter with Cerebral Palsy for the last 10 years, and today she turned to a fellow group of parents to share her frustration, and sadness, and despair. I was to say the least shocked at the responses from some of the non parents on the site.  This mom was basically burned at the stake for saying that enough was enough, and when she was defended by other parents, they too were attacked.

It is no secret that I suffer from depression. I have a signed letter and everything to certify that I am on the crazy train. Despite the fact that I try to make our life look happy and easy and fun, I really struggle some days to carry on. I tend to go and go and go and go and go, and then STOP. And it is very hard for me to start up again. There are tears and days of not wanting to get out of bed. I don’t want to answer emails, or make phone calls, or do anything. I can’t face having to arrange appointments, or work on adding content to Maclain’s communication device, or fill out forms for funding, or research a piece of equipment, or strategize on toilet training, or fight with the school, or investigate recreational programs, or try to find ways to fatten him up. And this list doesn’t even touch all the regular life stuff like cooking, cleaning, spending time with Chase and G, seeing friends, organizing birthday parties, going to baseball games, volunteering, helping other parents, personal grooming, working out, and so on and so on. At the end of the day, I figure out a way to pick it up and keep going. I dig deep and carry on because I love my family and I love my life. And as the years have passed, I have started to figure out what activities, therapies and programs are of value to Maclain, and what we can do without. It is not just the task that is hard, it is the emotional stuff that goes with it. Filling out applications that make you list your child’s diagnosis and medical history time and time again are emotionally exhausting. I can tell our story now without crying, but it doesn’t mean that it doesn’t rip at my heart every time the words leave my lips. I have also become more confident to tell therapists and professionals that I can’t do it all, and that we have to as a team, find strategies to make our goals realistic, and that if it we can’t find a way to make it easy, it probably won’t get done. I think that it is very easy for the people around us to forget that we are only human, and that we don’t know everything. Dropping off a communication device with me, with some programming instructions doesn’t make me a speech language pathologist.

I think that everyone gets to a point at some time in their life where they feel like they really can’t handle everything that they have to do. Now add to that the stress of caring for a child with a neurological disorder, and that point comes quicker and more often. When other people need a break, they are encouraged to do so. If you don’t like your job, think about a career change? If you have too many commitments, drop one or two? Maybe you don’t coach your kids hockey team this year, or you decide not to run for school council. But when a parent of a special needs kid wants to drop something, what do they drop? It is usually something that they are doing for themselves, because the guilt of giving up something pertaining to their child will tear them apart. I never like to see a parent who is at the end of their rope. But it is not for anyone to chastise them for their decision to step back, take a break, or give up. We don’t all have the strength in us to last the 10 rounds we need to win the fight. I would rather see a child get the love and attention they need and deserve, then to see a parent struggling to juggle everything and fail at it. The hair on the back of my neck stands up when I hear a doctor, or therapist say that they totally understand how we feel, but we just need to keep going. Sorry, but you could be the best, most supportive, most loving professional ever, but if you aren’t a special needs parent, you will never understand. You will never live with the inner struggle that we live with. We are so thankful for the amazing people that we have on team Maclain, and I know that none of them would ever, ever tell me that I was wrong for wanting to give up some days. Unfortunately, not all professionals are like that. and to them I say this. When I end up in a fight on a simple trip to get pizza because some guy parked in a handicapped spot? Does that happen to you when you go out to the corner store? Do you worry about whether or not the movies, restaurant, mall, hotel, etc, is accessible? And when it isn’t, do you jump on the computer to find out who you can call or email and complain to? Do you lose sleep worrying about whether or not your son is going to get his diaper changed at school, or spend all day sitting in his wheelchair? And then spend more time worrying because you have to find the time in the day to add that fight to your list? Do you fret about where you are going to find the money to get a new walker, or where to find winter boots to go over their AFO’s? Do you spend an hour crying in your car after a doctor appointment or after you get a recent report in the mail? Do you get anxiety attacks thinking about what happens when you aren’t around anymore?

A few years ago, I went to see a mother talk about a book she had written. It was about her life with her son, who had an undiagnosed condition. He had sadly passed away, but she bravely wrote about her experiences with her son. In the first five minutes of hearing her talk, I wanted to leave. She was reading a chapter she had written about giving up. They had decided to stop speech therapy because it wasn’t working, and they took him out of school because he wasn’t learning, and they stopped physical therapy because he wasn’t making gains. My hands were gripped so tightly that my nails were digging into my hand. I had to physically stop myself from jumping up and screaming at her that she was horrible for having done all those things. But as she went on to explain her decisions, I started to calm down. The days that he used to spend at school not learning anything, with an IEP that was never followed, were now spent at the zoo, hockey hall of fame, harbour front, the movies, doing crafts at home, experiencing life. Instead of struggling to find the right communication device, with a proper access point, they just found a way to interpret his needs and keep him happy, and it worked for them. All the stress and tears were gone, and they were communicating with him in their own way, and as long as the people close to him could understand, that was all that was needed. My fingers started to unravel themselves, and my blood pressure started to come down. I was no where near the point that she was at when I went to hear her talk, but over the years, that talk has resonated with me. She said that after her son passed away, she took alot of time to reflect on the decisions that she had made. Had she done the right thing to just give up after all the years that she had spent fighting for him, and trying all the therapies and buying all the equipment. She of course did not know he was going to pass away so young, but she said that she felt peace in her heart knowing that they last years of his life were happy years. That he was doing things that made him happy, and that gave their family a break from all the stress and pain of trying to keep up with futile attempts to change their situation. She spent months trying to find a way to get him to blow out the candles on his birthday cake all by himself, even going so far as to rig a hairdryer that he could turn on with a switch. When the big moment came, the switch didn’t work, he couldn’t eat the cake anyways, she was in tears from not making it work, and it almost ruined the birthday party. We special needs parents do this stuff to ourselves all the time. We don’t know any other way. So when we say that we just want to give up sometimes, think about all the events in our life that have led up to that point, and then decide if you want to tell us that we are bad parents for not having the energy anymore.

I still have plenty of fight left in me, and for now I will continue to do everything I can for Maclain to advance his knowledge and his functionality, but if the day comes when we have to give up some things because they are causing more harm than good, just do me a favour and keep your thoughts to yourself. Unless you want to come an join us at the zoo, or the hockey hall of fame.

Get your head out of your………

I have decided that I am tired of ignorant people. Growing up, my dad always told me that ” Ignorance of the law was no excuse”.  I have lost all patience lately with people who are just totally ignorant to people with disabilities, and this includes EVERYONE. When you have a child with a disability, whether it be physical, visual, learning, hearing, there will always be issues with the way the world is set up. The world as it is right now, is not desgined to meet the needs of our children or other people with disabilities. But there should be places where inclusion and accessibility are never a challenge, and people should be willing, able and happy to accommodate the needs of not only our  children, but all people with disabilities. When I am out in the community, I am ready to face the frustration of doors that are not automatic, or stairs that need to be climbed, elevators out of order, or equipment that can’t be accessed. People who don’t hold the door open, push past us, huff and puff when we take too long, roll their eyes when we ask for accomodations. Some days I decide to make an issue of it with the business owner, or landlord, or the individual themselves, other days I will simply send an email to make them aware, some days I put it on my ” I will get to it later” list.

The past week or so I have been unable to keep it in. These are the kinds of situations that we encounter all the time. ALL THE TIME.  These are not one off examples. And these all happened over the course of 2 weeks. Imagine a lifetime.

A beautiful little girl named Lexi, who has signicifant CP due to a condition known as Kernicterus was denied access to a museum because the employee didn’t want her wheelchair to dirty the carpet. Just think about that for a minute. It’s ok for people to go in with their shoes on, but she can’t go in with her wheelchair. Ignorant. That employee has subsequently been fired, and the museum has issued an apology to the family. In the meantime the story has received national attention, even reaching over to the UK. All of that negative attention could have been avoided, if only that employee had made a different decision, and hadn’t been so discriminatory and ignorant.

I take my son to his power wheelchair appointment a few weeks ago at Erinoakkids, a treatment centre for children with disabilities. We had heard all about the new waiting area that had been donated. We were looking forward to checking it out while we waited for our name to be called. It was for sure a great bright new fun area complete with ipads and touch screen computers with lots of great games on it for kids to play with. It would appear that  a lot of time and energy went into planning the area to make sure that their clients would really enjoy it. They just forgot one little detail. It is not accessible for kids in wheelchairs or walkers. No one bothered to check to make sure that children using mobility equipment could actually get close enough to touch the fun ipads and computers. How does this happen at a CHILDRENS TREATMENT CENTRE? And when I asked about the oversight, I was told that it had in fact just come up at their meeting ( after the stuff was already installed) but that they weren’t sure what they would be able to do about it. So, I asked the logical question about why the concept of accessibility wasn’t factored into the design to begin with I was told that the space was donated. What does that even mean? That because it was free, you didn’t think you should bother to let them know that a good part of your clients are in wheelchairs and walkers? Did you forget? Are you kidding me? Ignorant.

Are you ever in a rush, and you just want to quickly pop into the local hot and ready pizza place to grab a few pizzas because you are running late, and dinner is going to be eaten in the car on the way to your child’s baseball game? Consider this then. I am with Maclain and stop to get some pizzas one night last week. I pull up to park and see a BMW with its flashers on parked in the only handicap spot in the plaza. The spot I need so that I can get my ramp out to get my son out so we can go and buy pizza. Forgive me for not wanting to leave him alone in the hot car. So I pull up behind the car, and know damn well that when I look at their dash, I will see no permit. Sure enough, there was no permit. So when the driver comes out of the store beside the pizza place, he looks at me blocking him in, and tells me to move so he can get out. I tell him very promptly that he should not be parked there. He asks me why not. I tell him because you aren’t handicapped, you have no passenger that is handicapped, and you have no permit. He says he though that it was for old people as well. I ask him if that is why he put his flashers on. So he questions me on why I think I should get to park there. I quickly tell him that I am driving a wheelchair van, with a permit, and oh, I have a kid in the back in a wheelchair. He tells me that I should mind my own business. I tell him, that he can take that up with the bylaw officer, because I am going to keep my van blocking him while I call the town, and they send their nearest bylaw officer. So the bylaw officer shows up, gives him a ticket, I get told off again by the parking violator, he leaves, I park, get Maclain out, get our pizza and go on our way.  A half an hour after we started the process. Ignorant.

Things are hard enough for us, they don’t need to be made any harder by people, organizations and companies who can not be bothered to do the right thing. Please, think about how nothing is simple in our day, but there are some things they can be made easier. Be the person that helps us, not hinders us, and remember that there may come a time in your life where you will be touched personally by a disability. How will you feel when you, or your parent, or your friend, or your child can’t go to the museum, or get a pizza.

Who’s your Daddy?

This past weekend was Father’s Day. A day filled with new ties, homemade cards, a round of golf for the man of the year, and usually some kind of meat smoking on the bbq. It reminded me of how important that relationship is, and how fortunate I am to have great Dad’s in my life. We often hear in the world of special needs about the moms, and how incredible they are, and what an inspiration they can be. Sometimes we forget that there are dads to go along with the moms.

I have an amazing dad. I am a Daddy’s girl, hands down. He still tells me to “be careful” every time we hang up the phone, still tries to tell me what is best for me, and he is still proud of all that I do. He is also a loving Grandpa. Through changes in life, I also have a great Step-dad, who has taught me about cottage life, making wine, and how gross picked garlic is. He is a loving Papa.

I didn’t think I would every have kids. I was married once before, and he had never wanted children. I always knew deep down that my desire to be a mother would never go away, and so that marriage came to an end. When I met Graham, as hokey as it sounds, I could right away see him as the father of my children, and I knew he would be fantastic Daddy. He has not disappointed.

From the moment our first son Chase was born, we have parented 50/50. Diapers, feedings, baths, books, scraped knees, trick or treating, puking, sleepless nights. We have been partners in everything. He became a Dad, the moment I became a Mom, and he assumed the role with pride and love. We both decided when Chase was about 14 months old, that we would take another ride on the parenting rollercoaster.

When Maclain was born, we were all put to the test. It was a very difficult and emotional time. I was a mess. I am an independent, self sufficient, hard nosed, ” I will do it myself” stubborn person, but this was more than I could bear. Our previous experience as parents almost didn’t seem to apply anymore, and we had to find a new way to do things. I honestly don’t know how I made it through those first few weeks without Graham. He had to make the calls to everyone to tell them what had happened with Braden. He had to handle all of the immediate aftermath of Maclain’s birth, as I struggled to comprehend what had just happened. He took care of all of the arrangements for Braden’s funeral, every detail. It was months later when he told me how scared he had been by all that had happened, and that he feared that something might have happened to me as well. I had never ever stopped to consider the impact on him then, or now. Even today when he has to hear about my emotional breakdowns, constant stress migraines, obsessions over finding therapies, ranting about the system, and general cries of ” I don’t want to get out of bed today”.
He was with me every day for 6 weeks at the hospital, doing all his work at night, until I finally said I was ok to be there by myself for the next few months. He held down the fort at home with Chase, coordinating schedules with the various grandparents, and he also had the task of keeping said grandparents up to date through daily phone calls. He was there to change Maclain’s isolette, do kangaroo care, and fed him his very first bottle. He sat back as I tackled nurses and doctors, challenging everything, and asking millions of questions. I sometimes would envy him as he sat there in his chair at the bedside playing Sudoku puzzles, wondering how he could be so calm. But now I look back and realize that was his way. There was zero point in both of us going off half cocked all the time. He would listen to everything going on, and would be able to re-cap it later for me when I couldn’t remember everything that had been said by the doctor because I usually operating in a shell shocked manner. My ears would start to ring, and my eyes would actually black out with spots while they were talking to me, and so having Graham beside being calm and listening was important. He would also bring unwavering optimism. Sometimes annoying during my times of pity and anger, but always unwavering. Later, when I started to handle all of the doctor appointments, therapy sessions, teacher meetings and other necessary meetings by myself, I would feel angry and frustrated. Why do I have to do all this by myself? But he knew that I had a handle on everything, and that if I needed him there for emotional support, he would be there. I learned that I needed to be in charge when it came to being Maclain’s case manager, and that has become my role. It is my job now. Graham goes to his job, and earns a wage so we can have a house, and vacations, and pay for all the stuff for Maclain and Chase that we need. My job is just a different job, with a pay that isn’t monetary. And to be honest, I prefer to handle these meetings on my own, because then I can say what I want, and now have to worry about getting the stink eye from Graham when I lose my cool, or get a tad bit worked up. The downside is that he needs to wait about a week before I can fill him in on everything, because it takes me that long to actually want to discuss what happened.

It seemed that with every step back, or new diagnosis, nothing could shake him. Was it that he didn’t care? How could he not be upset? How can you stand there and be so calm? ” We can’t change what has happened Bren. We have no control over this. We just need to deal with it, and figure it out.” Plain and simple. For him, this has all just been a part of being a parent. There will be good times and bad times, and worrying about what we can’t change is not going to do any good. He loves his boys for who they are, not what they can or can’t do. I have never seen a moment of disappointment in his eyes when he looks at Maclain, and I hear a very proud Daddy when he talks about all that he has learned to do. When he was diagnosed initially with profound hearing loss, I curled up and wanted to die. Graham said we would just have to learn sign language. When we realized that he was disabled because of a medical error, I screamed and yelled, and pointed fingers of blame, and fought to understand why us? Graham said ” Let’s get a laywer, and fight this”. When Maclain got diagnosed with his CP, I cried in bed for 3 days straight, googling through my tears. I wailed that he would never play hockey. Graham said ” Who cares? He will do something else, and we will be right there cheering him on.”

And he has been cheering him on every since, every step of the way, in everything he does.