Tag Archives: parenting

A House Full Of Love

14 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today is Guest Post Exchange Day! I am honoured to introduce you to a fellow special needs mom, who is not only an awesome blogger, but also an awesome friend. Mimi has not one, not two, but five children with special needs. That would sound daunting to anyone, but Mimi wouldn’t change her life for anything.

Hi!  I’m Mimi, mom to 5 great kids, all with special needs, but we don’t focus on that.  We focus on their achievements, their triumphs and the love that they have for each other.  Sure, they fight just like any other siblings would fight but at the end of the day the love is still there for each other.  My oldest daughter is 24 and diagnosed with PDD-NOS (a form of autism) and is an unmedicated bipolar by her choice.  My next daughter is 22 and was born with Down Syndrome, hydrocephalus, PDD-NOS and acanthosis nigricans, she’s my spit-fire child.  Next is my soon to be 16 year old daughter who was born with spastic diaparesis cerebral palsy, she also has Asperger’s Syndrome, bipolar with psychosis, anxiety disorder and an eating disorder.  Next are my two boys, my first son is 10 (11 in June) and for some unknown reason he is cognitively impaired, he too has PDD-NOS and a mood disorder.  My youngest son is 9 (10 in June) and he was born with Fetal Valproate Syndrome, static encephalopathy (due to a traumatic birth), he has PDD-NOS and a mood disorder.

Raising special needs children has its ups and downs, but I wouldn’t trade my life for anything the world has to offer me.  My children are the reason my world rotates on its axis.  Some people call me a mother polar bear because I am so protective of my children, but who else is going to protect them besides me?

My boys are the best of friends, they are great playmates for each other and I hope and pray that the bond between them stays forever.  It’s similar to the bond between my 2 oldest daughters.  They are close because when they were young girls, I was a single parent by my choice, so it was just us 3 girls against the world.  Until I met my husband in 1994, Bethany was 6 and Lauryn was 4 and Jon has been their daddy ever since.

What entertains my kids?  Different things…  My boys are video gamers with their dad, they each have either their PSP’s or PSP Go’s or in Jons case his PSP Vita, but they all three will gang up on the bed and be gaming, ignoring everything else that’s going on, whereas Maurra my (almost) 16 yr old loves doing research on various things, which is very common for children diagnosed with Asperger’s Syndrome, right now she’s focusing on historical events.  Lauryn is crazy for Justin Bieber and loves to watch horror shows in her bedroom.  Bethany is my crazy football fan – well I’m pretty crazy for our Green Bay Packers also, so we tend to watch football together and we DVR the games so we can watch them through the week.

Our social outings look a little different than most.  First of all, my 3 youngest kids can’t handle car rides very well, so our trips have to be short in nature, and there has to be a reward at the end of the trip.  Lauryn enjoys going to her adult day program 4 days a week, but that’s about the extent of her traveling comfort.  She loves to dance in the truck which is fun and the cars around us seem to be her audience.  Bethany (my oldest) and I tend to do mother-daughter outings or she will go with me if I have to run errands.  It’s hard to break things up so the kids can handle everything, but in the end it’s for the best for them.

The boys are getting ready to start their 3rd year playing Miracle League baseball, which is baseball strictly for children who are disabled.  I volunteer my time with the league as the team coordinator and absolutely love watching all of the kids play the game.

Like I said before, I love having special needs children, and now we are looking into adopting a special needs child because there is more room in my heart for more children, but I can’t have them myself anymore.  So we are looking into a special needs adoption.  I hope it all works out for the best.

Well, thank you for letting me share my family with you.  Have a great day!

And thank you, Mimi, for sharing your family with us!

Mimi has a great blog at Wife… Mom… Writer… All Blessings. She can also be found on Twitter @Gigi_S.

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Let Go Of The Guilt For Mothers Day

13 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

I have a tendency to take on too much. In this regard I am very much like most moms. Whether it’s genetic wiring or just a normal part of motherhood, trying to do everything for everybody is just what we do.

From time to time, we get challenged on this by well-meaning people who say things like, “You have so much on your plate. You really need to learn how to say no.”

Yeah, like that’s going to happen. We can’t possibly say no, because, you know, we’re doing it for the children. All of the late nights, and the hours spent doing laundry, and the long commutes to full-time jobs – we do it all for the children.

While this is perfectly legitimate most of the time, there are times when we use the “for the children” line simply because we cannot process the idea that it’s OK to actually do something for ourselves once in a while.

For instance, when people ask me why I run, I tell them that it’s for my son, to raise funds for autism. It is true that this is what got me back into running after a long break, and it is also true that it helps a great deal with my motivation. But let’s be honest – there are other ways to raise funds for autism that don’t involve entire Sunday mornings spent running instead of with my family. When it comes down to it, I run because it makes me happy , but I’m darned if I’ll actually say that out loud.

My husband has this computer game that he plays most evenings. It’s one of those war games where tanks blow up other tanks – a guy game that I, as a woman, don’t really get. He says he plays this game to unwind and release some stress, and I completely understand that. He works hard and he does have a lot of stress to deal with. It’s perfectly reasonable that he would need an outlet. But when I play my computer games at the end of a long, stressful day, it is under the cloak of intense guilt. I feel that the time I’m spending actually enjoying myself should instead be spent doing something for somebody else.

I know I’m not alone in this. I ran an informal poll on my social media feeds asking fellow moms for their views. Here’s some of what they had to say:

Kerry says that she feels guilty when she does things for herself or buys herself anything. “Can’t get a hair cut, the child needs one first. Can’t buy a new pair of shoes. Too much guilt!”

Tammy had a one-word answer to the question of whether she feels the guilt: “YYYYEEESSSSSSSS”

Hollie poignantly said she doesn’t feel the guilt, “because it’s very rare that I do anything for myself.” This is in a similar vein to Ruth, who says that she doesn’t feel guilty as such, but she’s simply lost the hang of doing things for herself.

Sara, a single mom of special needs kids who really needs a break, reports that she recently considered canceling a vacation so she could buy a car seat for her child, who doesn’t even need it yet. And Nicole said that the few times she doesn’t feel guilty, she starts to feel guilty about not feeling guilty!

I wonder why that is, just why we moms are able to turn guilt into even more of an art form than the Catholics. I mean, we are fully prepared to acknowledge when other people, like our husbands, deserve a break. Why can’t we do the same for ourselves?

If we got just a little bit better at slowing down once in a while, and unashamedly doing stuff we enjoy simply because we enjoy it, maybe we would feel less overwhelmed.

I have great admiration for the moms who strike more of a balance, the moms who take a stand for themselves and say, “You know what? I deserve this and I’m going to enjoy it without feeling guilty about it!”

Fellow mom Marci says she used to feel the guilt, but not anymore. “I found that doing *me* made me calmer and more available to my cherubs!!! Best thing I could’ve done for the family.”

Marci is one of several moms who have managed to make peace with the idea that they are as important as the people they take care of. As Jacquie says, ” If I don’t take care of ME, who’s going to take care of THEM?”

Randi agrees. “I realize that if I don’t take care of me, I’m going to be grumpy and not a good mom.”

Today is Mothers Day in most parts of the world. It is a day when, if we’re lucky, our families take the time to let us know they appreciate us. Why don’t we do that for ourselves as well, and for each other? Let’s give ourselves a much-deserved pat on the back and acknowledge all that we do.

And let’s make a decision to take care of ourselves and spoil ourselves once in a while, without feeling guilty, not just today but always.

Because we deserve it.

Happy Mothers Day.

(Photo credit: http://www.flickr.com/photos/sergemelki/3519265411/. This picture has a creative commons attribution license.)

You Think You Know…

8 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today, I am also participating in the WEGO Health True Life Tuesday Blog Party, in which participants start their posts with the phrase, “You think you know, but you have no idea…”

You think you know, but you have no idea.

You look at parents who have special needs kids, and you contemplate the things you think they are doing wrong. Thinking you know better, you utter sentences that start with the phrase, “If that was my child…”

Until you get handed a diagnosis of autism and realize that, wait a minute, that is your child. You find yourself facing the same challenges as all of those parents you used to be quick to judge, and you find yourself responding in very similar ways.

You have no idea what special needs parenting is like until you are wearing those shoes.

Yes, my child has sometimes been the kid having a very loud meltdown in a grocery store.
Yes, I am the mom who has occasionally snapped needlessly at her kids in public, because she was just so overwhelmed.
Yes, I sometimes let my child play on the computer for longer than is considered ideal, because I am so desperate for time to take a shower.
Yes, I do want to get all available services for my child, but that is way easier said than done.
No, I don’t invite my son’s classmates over for playdates to encourage interaction. They are all special needs kids, and seeing each other outside of school is too weird and overwhelming for them.
Yes, my son’s hair is tangled and unruly. He is terrified of having it either washed or cut, and I just have to do the best I can. I know it doesn’t always look great.
Yes, I vaccinate my kids. I think the autism/vaccine link is pure bumph. I respect anyone who does believe in the link and I expect the same courtesy from them.

And no, I had no clue what special needs parenting was all about until I woke up one morning and discovered that I was now one of them. Many things have surprised me about this journey. There are things both good and bad that I did not expect. Being a special needs mom has taught me a great deal about myself and about other people. One of my biggest surprise discoveries is that I have far bigger reserves of patience than I thought. For the most part, I can stay calm in the face of a meltdown, and do what I need to do to see myself and my son through the storm.

Last week, I used my social media channels to ask other moms the question: just what is it about special needs parenting that has surprised you the most? I got responses that were both poignant and uplifting. Many of them I can relate to myself.

Here’s what other special parents have found surprising about their journeys:

  • The apathy of most people. If it’s not affecting them personally, they don’t give a crap or they say ” Why should I? It’s not affecting me” (Leigh)
  • It’s not as bad as I thought it would be. (Jacquie)
  • How much energy it takes at times…like mid-meltdown… (Lucette)
  • The lack of community support. I was also surprised by my reaction to that – one of passion and action! (Amy)
  • How ignorant the NT’s can be (Ron) (For the uninitiated, NT means neurotypical, a fancy term for “typically developing”)
  • How strong it can make a mother! (Mimi)
  • How screwed up my idea of success was. (Jennifer)
  • How uncaring the rest of the community is and how much energy it takes to keep on fighting for acceptance. (Susan)
  • The fact that we have to fight our school systems for EVERY support and service that will help our kids in the future. (Barbara)
  • How hard it is to accept offers of help, and how much better it works for everyone when I do. (Ruth)
  • How strong I’ve become, physically and emotionally…well, most days anyway. 😉  (Megan)
  • How after a while you stop seeing the special needs, and just see the child. It’s only ever other people who make you notice the special needs again. (Freya)
  • How hard but rewarding it is! (Hike. Blog. Love)
  • How much you truly learn from them! And I now know the real meaning of determination. (Vera)
  • How I have forced myself to re-evaluate some of the values I had about life. Some people will always do “bad” things, our faith in a Higher Power should be our motivation to forgive those people since we ask forgiveness from “Above” and HE forgives indiscriminately (Naadia)

Reading what these parents have to say should send a very clear message that even when there’s a common diagnosis, like autism, everyone’s journey is unique. We all have our own sets of challenges.

So next time you think someone is falling short of what they could or should be doing as a parent, just remember that you’ll probably never have the opportunity to wear their shoes.

(Photo credit: http://www.flickr.com/photos/libookperson/6187904322/. This picture has a creative commons attribution license.)

Maintaining The Balance

7 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

I’ve been feeling disoriented and out of sorts all day. I woke up very early this morning after a night of virtually no sleep, had to deal with an autism meltdown resulting from a power outage, and then due to circumstances beyond my control, had to skip the long run I’ve been itching for all day.

Because of all of this, when I sat down to write this post, I came up empty when I was digging around in the warehouse of my mind for a topic. All is not lost though, because Facebook came to the rescue. I posted a status update asking for topic ideas, and a friend of mine who is a fellow mom immediately fired off a whole list of ideas, that will pretty much see me through the rest of the month.

If anything, I was left with the opposite problem: too many ideas to choose from.

In the end, I decided on this one for today:How does Mom manage parent time, marriage time and self time while also working outside the home?

How indeed?

Moms in general have to wear many, many hats. Special needs moms have to wear even more, simply by virtue of the fact that parenting a special needs child requires a completely different set of parenting skills to parenting a typically developing child. Add to that the fact that I work a full-time job that involves two hours of commuting each day, and I do all of the admin for my husband’s business. I also make sure the household bills get paid, and I am trying to establish myself as a writer.

It can be very, very hard to carve out time for my husband, much less for myself. But for the sake of my sanity and everyone’s happiness, I have to find a way to do it.

I have tried to stay on top of things through a variety of means. Written daily schedules. Routines. Planning. To-do lists.

All of that helps, but it is not the complete answer. I can plan and schedule until the cows come home, but it all comes to naught without one crucial ingredient.

Commitment to go to bed by a certain time.

It is incredible how powerful a simple commitment like that can be. It cannot merely be a commitment with myself – it has to be a declared intention. I don’t exactly post it on Facebook, but I do tell my husband that I will be going to bed at such-and-such a time. Once I make and state it, I feel obligated to follow through. And so my mind immediately calculates how much time I have, and how I can best arrange what I need to do, to fit within that time.

And you know? It works.

By following this practice, I have been figuring out how to do things more quickly. I have also been spending more time with my husband and getting enough sleep to enable to get up early to go running in the mornings.

I don’t always get it right, as some late night status updates on Facebook will testify, but I am doing a lot better than I used to.

Now, if only I could find the time to follow my secret career ambition of becoming a Mythbuster…

(Photo credit: http://www.flickr.com/photos/leoglenn_g/5789714663/. This picture has a creative commons attribution license.)

Child, Paper, Scissors

25 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 25 – Third person post: Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.

The little girl struggled with her craft project and prayed for the bell to ring. Unlike her classmates, who were happily making creations out of coloured construction paper and bits of glitter, she didn’t really know what she was supposed to do. She didn’t want to ask Miss H, the teacher, for help. Miss H hated her and would only yell at her.

Sighing inwardly, she picked up her scissors and tried to cut a triangle out of a piece of bright yellow construction paper. But the scissors were too blunt – made that way for the safety of ten-year-olds like herself – and they were hard for people like her to use. Sometimes it was hard being a left-handed person in a right-handed world.

The little girl found herself close to tears as she tried to get the scissors to comply. She had a hard enough time at school. She had “learning disabilities”. She didn’t know exactly what that meant, but she did know that she had to work really, really hard just to keep up with her classmates.

Sensing someone standing behind her, the little girl looked up and saw Miss H regarding her sternly. She started to quiver. She was afraid of Miss H. She almost cried with relief when the bell rang, signalling the end of the school day. But when she started to gather up her things, Miss H pinned her to her seat with a glare and said, “You’re not going anywhere until you cut that piece of paper properly.”

The little girl watched helplessly as her classmates filed out of the room. I can do this, she thought. It’s only scissors. I’ll cut this paper and then I’ll be allowed to leave.

Under Miss H’s hostile gaze, the little girl picked up the scissors with her left hand and prepared to cut.

“The scissors go in your other hand!” barked Miss H.

“But I’m left-handed,” said the little girl timidly.

“Not in my class! Now pick up those scissors – in your right hand – and cut!

The little girl tentatively held the scissors in her right hand. She tried to cut but the paper just bunched up awkwardly. The little girl looked up imploringly.

“My mom is waiting for me,” she whispered.

“She’s just going to have to wait! You’re not going until you get this right! Are you so stupid that you can’t cut a simple piece of paper?”

The little girl tried again, but this time she was shaking so badly that she accidentally ripped the paper. Miss H whipped the paper away and slapped a fresh sheet down on the desk.

“Do it!” she snapped.

As the little girl tried desperately to use the hand she was not designed to use, the pile of discarded paper grew. Fat tears started rolling down her face and plopping onto the paper.

All of a sudden a new voice pierced the terrible atmosphere: the little girl’s mother had come looking for her and was witnessing the events with horror.

“Miss H!What is going on?” asked the girl’s mother, furiously.

Miss H, caught off-guard by a mother protecting her young, said something incoherent about acting in the best interests of the child.

The little girl’s mother lowered her voice menacingly and said, “Now, you listen to me. My daughter has a learning disability that you are well aware of. And you have just destroyed five years of confidence-building work in fifteen minutes. I hope you’re happy!”

With that, the mother swept up her little girl and whisked her away to safety.

She took her home and immediately started the process of building up her broken child.

(Photo credit: Kirsten Doyle)

Note To Self

22 Apr

 

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 22 – The things we forget: Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?

A few nights ago I was late getting home from work because of a delay on the subway. This meant that after a day that had already been long and frustrating, I had to compress the evening’s usual chores and and activities into a shorter amount of time. As soon as I got home, I started doing what I needed to do, without giving myself any time to unwind. I efficiently moved from task to task, supervising homework, getting the laundry on, preparing packed lunches for the following day, eating dinner that, thankfully, my husband had already made.

I was stressed about the time, trying to get everything done and still get to bed at a reasonable hour. When the kids were slow to put on their pyjamas, I was a little more brusque with them than I really needed to be. Later, after they were sleeping, I prepared the coffee machine for the morning, as I always do. While I was measuring out the coffee, I accidentally spilled a little bit of it on the kitchen counter.

And I totally lost it. That little bit of spilled coffee turned out to be the straw that broke the camel’s back on that particular day. I didn’t get mad and throw things, but I broke down crying. I sat down and put my head on my desk and just sobbed. For those few minutes that I lost control, the coffee represented the general disarray of my entire life.

When it was all over, I inevitably felt a little foolish. A meltdown over spilled coffee that took all of three seconds to clean up? What was that about?

The truth is that all of my concerns about that evening had been about inconsequential stuff. So what if I was half an hour late getting home? It wouldn’t have been the end of the world if the kids had been fifteen minutes late getting to bed. That load of laundry could have waited until the following day. I could have set up the coffee machine in the morning.

But instead, I allowed myself to get absolutely wound up over things that really didn’t matter. And when you consider all I have to deal with that does matter, that seems counter -productive. Very often I am so overwhelmed by my full-time-job-mom-of-two-with-special-needs-child existence that the slightest things can just feel like a major catastrophe to me.

Sometimes I need a reminder to pick my battles, and avoid getting stressed about things that, when it comes right down to it, have absolutely no bearing on the quality of my life. I need to learn how to let the little things go so I can devote more of my energy to the big things.

And I shouldn’t pet the sweaty stuff, because that’s just gross.

(Photo credit: Kirsten Doyle with a little help from http://wigflip.com/superstickies/)

Dining With The Stars

19 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 19 – 5 dinner guests: Who are five people you’d love to have dinner with (living or deceased) and why?

When I have people over for dinner, it’s always a very casual affair, from the planning right down to the execution. It usually starts when my husband or I casually mentions someone we haven’t seen for a long time. We call that person up on an impulse and invite them to come over that evening. And since we’re inviting this person, well, we may just as well invite that person. The more, the merrier, and all that. With the phone calls made, the husband goes out to buy alcoholic beverages to suit our guests’ tastes. I go wading in our big freezer and emerge with a giant store-made lasagna, those ones that take about seventeen years to defrost. I throw together a salad and make garlic butter for the bread. I’m not much of a cook, but I make a mean garlic butter. The guests arrive and we all dispense as quickly as possible with the business of eating. I get the kids settled into bed and then spend the rest of the evening drinking wine, which let’s face it, was really the whole point of having the dinner party.

My fantasy dinner party would have to be more carefully planned, simply because the people I would want to invite are kind of busy. You can’t just call them up and ask  them to show up at your house in the next two hours. You have to schedule their time, usually months in advance, and it’s a case of “your people calling their people”.

There wouldn’t be any frozen lasagna, and the whole thing would have some finesse to it. You can’t invite a guy like Nelson Mandela to your house and serve him frozen lasagna on the pretext of having a booze-up. No, I would hire a chef, a posh one who makes things normal people cannot pronounce and who knows what wine goes with what food.

My guests, assuming they all accepted the invitation (and, I mean, who wouldn’t?) would include the following five people:

Nelson Mandela. If you discriminated against most people throughout their early lives and then threw them into prison for twenty-seven years, they’d probably be a little bitter. It takes a very special kind of man to emerge from all of that and become a successful statesman, and to do it with grace, dignity and humility. Mandela is South Africa’s answer to the Royal Family, with one exception: everyone loves him, and with good reason.
What I have in common with him: we share a country of birth.

Terry Fox. The most iconic runner of all iconic runners, Terry Fox ran almost all the way across Canada with a prosthetic leg, while cancer was eating away at his body. His “Marathon of Hope” started a worldwide movement that continues to this day, more than thirty years after his death. If anyone had a reason to give up, it was him, and yet his absolute dedication to his cause and to his sport did not waver. His body was absolutely shattered, but his mind was super-hero strong.
What I have in common with him: I run for a cause.

Ed Mirvish. The world can be a peculiar place. Many rich people just want to get richer, regardless of the cost to anyone else. At the same time, a lot of the true humanitarians of the world are willing to give away what little they have for the betterment of their fellow man. Ed Mirvish was a rich old Canadian bloke with a landmark retail store and a near-monopoly on Toronto’s theatre industry. He had a truckload of money, and he kept giving stuff away to people who really needed it. While many rich people and corporations donate to charity for the purpose of making themselves look good in the public eye, Ed Mirvish did it because he really cared. You gotta love a guy who stands around handing out free turkeys to people who cannot afford Thanksgiving dinner – an annual tradition that has been continued in his memory.
What I have in common with him: I care deeply about making the world a better place.

Drew Barrymore. I’ve never been big on celebrities, but I confess to being totally in awe of Drew Barrymore. Like many people, I first saw her as the adorable child star in E.T. She shot to stardom so spectacularly as a child that her descent into a lifestyle of substance abuse almost seemed inevitable. It would have been so easy for her to live her life in the tabloid media by virtue of her addictions, but instead she went to rehab, sorted out her life, and established herself as an actress to be reckoned with.
What I have in common with her: I have overcome some intense challenges of my own – albeit ones of a different nature – instead of drowning in the events of the past.

Temple Grandin’s mother. Temple Grandin was a child with autism in the 1950’s – a time when autism was barely understood, much less known. She is now a highly successful adult, with a PhD in animal sciences. She done a lot of groundbreaking work in fields relating to animal welfare, and she is an outspoken autism advocate and educator. She puts much of her success down to her mother, who offered her unfailing support and mentoring throughout her childhood. It is a challenge to raise a child with autism in today’s world of IBI therapy and online support groups and autism advocacy everywhere. I cannot imagine what it must have been like for a mom back then, with far less knowledge and support to draw on.
What I have in common with her: I am the parent of a child with autism, who I would move heaven and earth for.

Who would be at your dinner party and why?

(Photo credit: http://www.flickr.com/photos/lisa_nichols/3288476050/. This picture has a creative commons attribution license.)