Here's a new video of some of my favorite photos and videos of Shira from the past and recently. Enjoy. Brad
Spinal Muscular Atrophy Canada
Thursday, May 29, 2014
New Video Of Shira's Adventures
Here's a new video of some of my favorite photos and videos of Shira from the past and recently. Enjoy. Brad
Thursday, February 6, 2014
15 Things Never to Say to a Special Needs Parent
As a special needs parent, it seems that people have a desire to comment to me about my children, my parenting, my spiritual beliefs, my life choices and my future plans. Friends, acquaintances, family members and complete strangers are remarkably comfortable questioning and commenting on various aspects of our lives. Unless the comments are intentionally rude, I smile, I nod and I educate; however, that doesn't mean I'm not sometimes offended or put off by these comments.
I work hard to maintain my belief that the world is basically good and that most of the people in it are good as well. To this end, I really want to believe that most of these comments, no matter how inappropriate, hurtful or insulting they may be, come from a place of good intentions that have gone awry.
I hope, I believe, I want so much for this to be true, because if this is true, then my belief in the goodness of the world might be true as well. And so, I write this list in the hopes that it will be read by some of those good people who mean well but whose words can still be as sharp as knives.
All of the following examples of things not to say come from things that have actually been said to me or other special needs parents. Thank you to my friends who shared your stories to help me with this article.
1. "She looks so normal" or "I didn't know anything was wrong with him."
There are many variations of this one, but I have always found these versions to be the most offensive. First off, what is normal anyway? I can handle typical, age-appropriate, even average, but not being "normal" implies what? That she is in fact abnormal, weird, bizarre? As for option two, there is nothing "wrong" with him. While he may have physical, mental and/or medical challenges that most children don't have, that doesn't mean he is wrong in any way. He is exactly who he is supposed to be and there is nothing wrong with that.
2. "He looks fine to me" or "you would never know to look at her."
If someone tells you that his or her child has any type of disability or challenge, the correct response is never to downplay this child's challenges by suggesting that they don't really exist or at least that they are not apparent to you. This comment was a big hot button issue for many parents when I asked around about things not to say. I guess this seems like it will somehow be a comforting thing to say, but in fact, it's just the opposite. First, please realize the amount of effort that has gotten the child to this place where they "look fine" to you. No, it didn't happen overnight. In fact, for many, it was hours of therapy, over the course of many years, not just having therapists see your child in your home and taking your child to therapy appointments but actually becoming a therapist yourself, living, breathing, dreaming about how to make everyday activities therapeutic for your child. All of this is lost in these comments. Furthermore, these comments bring the child's current challenges into question. If I am telling you about my child's diagnosis, it's probably for a reason, so to tell me he "looks fine" basically shuts down the conversation and makes me feel discredited.
3. "Is it genetic?"
It is definitely not OK to ask this unless you are a family member and even then you might want to tread lightly. As the parent where a genetic nightmare resided that I was completely unaware of before having children, I can tell you that this question is a time bomb. While I don't like to think about the fact that my genes are the reason my son has had to have two brain surgeries and has cerebral palsy, the fact is, it's true. Please don't drudge up this negativity by asking me about genetics. For other people for whom the disability does not have a genetic cause, the undertone of this question is that you are wondering if they are somehow to blame for causing the child's challenges.
4. "He's going to grow out of it, right?"
No, people don't grow out of cerebral palsy or autism or any other disability. They don't grow out of PKU or hemophilia either. Of course we expect and hope and pray for continued progress, but also with the knowledge that these difficulties are lifelong. That is the end of today's common sense service announcement.
5. "Did you cause her to be in a wheelchair?"
What would possess a person to ask this of a parent? Seriously, hard to even imagine the good place that went awry with a question like this. Don't ask a parent if they caused their child's disability; most likely they did not. If they did, it was probably in a horrible accident and I suspect they would prefer not to discuss it.
6. "My uncle's brother's nephew's cousin has autism, so I know what it's like" or "My nephew's cousin has autism, too. He's really good at math. What's your son gifted in?"
Don't for a moment believe that you know my experiences or the experiences of any other special needs family, no matter who you know. First, just like any other child, my child is unique. Would you presume to understand all there is to know about a child you just met simply by knowing their age and gender? If you've met one child with autism, you have met one child with autism. If you are interested in what it's like to live in my shoes, ask me, in a kind and respectful way, at an appropriate time. I assure you, you will not know otherwise.
Wow, seriously? How incredibly rude is this question? But since you asked, let me tell you a story. We always wanted at least two children. When my son became ill and we realized that his condition was genetic we decided that it would be unwise to have another child who could potentially have the same condition. However, having another child was important to us for so many reasons, including easing a bit of my anxiety about leaving our son alone in the world one day. But since it wasn't meant to be, we let go of this dreamed-about baby, for the sake of his or her own potential health. And we were sad and we mourned but we moved on. And then, despite our plans and intentions, we discovered we were having another baby anyway. And we were excited, and scared and worried, and thrilled! This is my answer to why we didn't stop having kids; it's messy and full of sorrow and joy, and it's far from simple. This is not a chat I want to have in the checkout line at the grocery store, so don't ask.
8. "God only gives you what you can handle."
This one was another hot button issue for many parents. What if I can't handle it, what if I'm trying to tell you that I need help, what if I'm falling apart or I know that something has to give because I'm just not keeping it together anymore? And what if before I'm able to share my grief and anguish with you, you tell me that God didn't give me more than I can handle. But he did, and I know that I have more than I can handle, and I am trying to reach out for help. This comment just squarely shut me down. Remember, if it takes a village to raise a typical child, it takes a large city to raise a special needs child. Whatever your thoughts are on God, I don't believe he intended me to have to handle all this tough stuff on my own. Furthermore, I have a hard time believing that God chose me and said, "hey, she can handle a whole lot of hard stuff, so I think I will give her a whole lot of extra stuff to deal with, and in the process, I'll cause her son to have terrible pain, lots of medical problems and a physical disability." I can't at all claim to know how children are chosen to have extra challenges, but I don't think you can either. I prefer to believe that God helps me handle whatever challenges are in my path to handle. We all believe what works for us; please don't try to push your beliefs on me.
9. "Have you tried juicing?" or "Why don't you watch this movie about the keto diet?"
These sorts of comments are so incredibly unhelpful. The implication is that somehow you know more than the team of highly trained medical specialists treating my child. While I am all for natural interventions, I also realize that we are very lucky to have modern medicine and I intend to work with my child's medical professionals to responsibly combine natural and modern medical treatments to give him the best of what both can offer. The other issue here is that there is an implication that juicing or removing red dyes, or a gluten and casein free diet, or cranial sacral therapy etc. will somehow be a cure-all. Now don't get me wrong, I am willing to try almost anything that might help my child, and I know many families who swear that they have seen improvement with these sorts of techniques, and who am I to say otherwise? However, please don't suggest that any of these are going to cure my child. Because I will argue that if you know someone whose permanent disability was cured with juicing, they probably didn't have it in the first place!
10. Comments on work, such as: "It must be nice coming late" after running around all morning at appointments or "It must be nice getting to relax all day since you don't have a job."
Taking care of children with special needs is hard work, period. Whether a parent works outside of the home or not, assume they have a full-time job (and by that I mean 24 hours a day, seven days a week).
11. "He's one of God's special angels."
Seriously? Yuck! If I thought this was something you said about all children I guess I could stomach it, but reserving it for kids with special needs is just patronizing.
12. "How in the world did you break both your legs?"
Orthotics aren't familiar to most people who don't know someone who uses them. So just know this: they are not casts and they are not typically used in the treatment of broken bones. When people see a child in an orthotic, they often ask if they broke a bone or assume they had an injury. It's very confusing to a small child who did not break their legs or injure themselves to be asked all the time how they got hurt. Unless you see a cast, assume it's not a broken bone. For that matter, many of our kids wear casts during stretching regimes for weeks at a time or for constraint therapy to encourage them to use a weaker hand by constraining a stronger one. So I guess it's never safe to assume.
We all do the best we can with the situations we are faced with in life. Trust me, I never dreamed that I would be able to pop an IV in seconds flat. I never expected to know about orthotics, or to have a good relationship with our pharmacist who knows me by name, or to know what a physiatrist is or how they categorize athletes in the Paralympics. The term "adaptive sports" meant nothing to me 10 years ago, and now it's a huge focus of our lives. You love your kids and they need special care so you give it to them, period. Don't presume that caring for my child makes me Supermom. Tell me I'm a great mom because I laid down the law and set my kids straight when they were acting up. Or because I managed to sneak vegetables into mac and cheese and no one noticed. Taking care of my kids doesn't make me a great mom, it just makes me a mom; that's what we do.
14. "I can't believe you give her (insert medicine or medical procedure here), I would never give that to my child."
Well thank God your child doesn't have the medical need for it, for goodness' sake, because if they did I'm sure you would rest on your laurels and not give them the lifesaving treatment they need. Seriously people, think before you open your mouths. I hear this most often relating to seizure medicine. Don't get me wrong, I hate the seizure meds and the toll they have taken on my child's brain. However, I know that the permanent damage to his brain they are saving him from is absolutely worth it. Yes, I will take the slowed cognitive efficiency, in favor of protecting his brain. Furthermore, this difficult and complex decision rests with my husband and me and the team of highly skilled specialists who treat our child. We have this under control, so feel free to donate your two cents elsewhere on this matter.
15. "I nearly had a stroke" or "I think I'm going to have an epileptic fit" or "Are you retarded?"
We can be a bit sensitive about these sorts of things. The "R" word is a real issue for me. It's just so offensive and outdated. To hear grown adults using it is shameful. It was offensive to say in high school, but we didn't know or understand, or maybe we just didn't care. However, everyone should know and understand now, so the message you're sending if you're still using it is that you don't care.
Comments such as "I nearly had a stroke" can be really offensive to a parent whose child did in fact have a stroke. Just be conscious of your audience and think before you speak; truly, that's good advice for any occasion.
Now you know 15 things not to say to a special needs parent. Keep an eye out for an upcoming sequel where I will delve into some alternative options to the comments above. Feel free to share your ideas for that article in the comments below.
This article originally appeared on The Mobility Resource blog.
Posted by Unknown at 6:54 AM No comments:
Saturday, January 11, 2014
MASTERY OF MIND OPENS AVENUES OF HOPE
Change your attitude, look past yourself and deliver the care your child needs. Remember it's not the caregiver who is sick and needs help it's the patient. We have to move past anticipatory grief, spend time with our children that is where our healing lies in the time we spend with our children.
All that we are is the result of what we have thought.
– The Buddha
– The Buddha
"Our destiny is in our own hands. Since we are formed by our thoughts, it follows that what we become tomorrow is shaped by what we think today.Happily, we can choose the way we think. We can choose our feelings, aspirations, desires, and the way we view our world and ourselves. Mastery of the mind opens avenues of hope. We can begin to reshape our life and character, rebuild relationships, thrive in the stress of daily living – we can become the kind of person we want to be." ~ Eknath Easwaran
"The door that locks you in, is also the door that lets you out."-Sri Nisargadatta Maharaj
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Tuesday, December 31, 2013
TAKE YOUR TIME
relationships, of course, not only take time, they take 'quality time.'
This is especially true with children, where what matters is not only
the number of hours we spend but also the attention we give, the love we
show, the extent to which we enter into the child's world instead of
dragging him or her into our own. Schedules are fine at the office, but
children have a sense of time that is very different - and much more
natural. They don't know about appointments and parking meters and
living in the fast lane, and we cannot make them understand. All we can
do is hurry them along.
"We adults can learn to slow down
enough to enter their world; it's not their job to speed up and join
ours. Where is the hurry?"
- Eknath Easwaran, from "Take Your Time"
Posted by Unknown at 12:52 PM No comments:
Labels: Muscular Dystophy, SMA, SMA Type 1, Spinal Muscular Atrophy
Sunday, October 6, 2013
SHIRA'S SCARY, GROSS AND REALLY FUN PLAY DATE WITH LIA OCTOBER 06, 2013
Posted by Unknown at 10:15 PM 1 comment:
Labels: Muscular Dystrophy, SMA Type 1, Spinal Muscular Atrophy Canada, Spinal Muscular Atrophy Type 1
Sunday, September 22, 2013
Shira Swinging In The Living Room
Posted by Unknown at 6:41 PM No comments:
Monday, June 17, 2013
Shira's 8th Birthday Party Video
Shira's fantastic 8th birthday party!!! We are so thankful to still have Shira with us. We love you Shira!
Posted by Unknown at 2:52 PM 3 comments:
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