Ok I'm going to have a mom on a warpath moment. Nothing makes me go from my usual sweet and polite country girl self to a complete and total, albeit justifiable b***h faster than when some ignorant fool says something derogatory about people with special needs. There is an injustice here that needs to stop. When people make fun of how a child walks, talks, looks, etc. or when they say things like "Special needs kids are just lazy." I have an undeniable need to want to slap them.
When did we as a society get so intolerant? When did we start to lack empathy? It's called a disability for a reason. Do they truly not realize that the ability to learn quickly is a luxury not everyone has? I think on some level they do realize that, but they choose to ignore it. They choose to ignore it because it's easier to be swept away in the current of intolerance than to fight through the ignorance to stand on the solid ground that is understanding and acceptance.
I myself do not have a physical or learning disability but I have a father, cousin, sister, husband and child who do so I think I have it on pretty good authority that they are NOT lazy. They are the furthest thing from it. Every accomplishment they make, they earned. And they earned it the hard way by pushing for it, working towards it, never giving up. There are very few "normal" people that I've met with the same kind of drive and determination as my "learning and physically disabled" family members. I was raised from an early age to know that my intelligence is a gift, just as my father's ability to make anything with machinery was a gift, my brother's athletic ability was a gift. Every one of us has a gift and these gifts are all important, regardless of what the world may tell you.
For those of you who still think Special Needs kids are just lazy I offer you this special needs challenge:
1. Find an article in a language that is foreign to you. Now translate (No using an online translator)and understand it in 5 minutes or less.
...Can you do it? Good for you. Those of you who couldn't: Congrats you just got a teeny tiny taste of what it's like to have dyslexia. People with dyslexia have to translate every word, every letter, every time. The letters in words move around on the paper, similarly shaped letters like b's and d's are pretty much a guessing game, sometimes the letters are allputtogetherinthesamelinewhichmakesitincrediblyhardtodecipher, otreh imest eyth rea xedmi gotoreh (other times they are mixed together). Not only do they have to rearrange all those letters they have retain what they've read and are expected to do all of that at the same pace as students without dyslexia. It would be comparable to someone who never spoke German a day in their life being able to read and understand an article at the same pace as someone whose native tongue is German. And yet these kids DO decipher the words. they DO the assignments. They DO find ways to be more efficient and successful. So for those of you who couldn't complete the challenge in 5 minutes or less... don't worry too much about it you're just lazy.
2. Take a roll of duct tape. Tape your legs together. Now continue to do your daily routine to the extent that you usually do. Make sure you get everywhere on time.
...Can you do it? Awesome...you should probably get some kind of award for fastest learning curve in arm walking! Couldn't do it? Congrats you just got a teeny tiny taste of what it's like to not have the use of your legs. Simple things like opening doors, reaching for food in the lunch line, getting out of the way from people walking towards you, taking a shower and changing your clothes all take an exorbitant amount of effort. Couldn't maintain your routine to the extent that you usually could... don't worry too much about it you're just lazy. Unravel the duct tape from your legs and carry on just do so with the knowledge that some people can't simply unroll duct tape and walk out of the room.
3. Cut a pair of yardsticks so that they end up going from your feet to your mid-thigh. Now duct tape those to your legs. Now walk around school, work, the neighborhood and make sure everything you normally do is done efficiently, to the extent of what you normally do, and at the same pace as everyone else around you.
...Can you do it? Impressive, hats off to ya man. Couldn't do it? Congrats you just got a teeny tiny taste of what it's like to have Spina Bifida and have to use leg braces to get around. Have a hard time getting around, doing normal every day things? Had a hard time with people giving you strange looks and trying to keep up with everything and everyone around you? Don't worry too much about it, you're just lazy.
..... now I could go on and on with more challenges but I'm pretty sure I've made my point. So the next time you see a child struggling to understand things or one that might not be as quick as others remember, you don't know their story. You don't know what struggles they may have. So don't judge others by the label "Learning Disabled". It's easy to call someone lazy when the alternative is to actually try to understand the reality of their situation. The time is now to overcome this level of under-reported and sadly too often accepted ignorance. The time is now.
Wednesday, August 14, 2013
Sunday, August 4, 2013
Just Dignosed?: A mom's guide to getting through it
So you've just got the diagnosis. Not sure where to go or what to do next? Well I've put together a handy-dandy guide of little tips that will make this process go a little smoother...
1. Take a moment to let the situation sink in, throw yourself a mini pity party if you need to... now get over it.
Preferably as soon as possible because you have a child who needs you. And they need you to be strong. They need you to be advocates for their health. Now more than ever you must show them how important they are to you. How they are valued, cherished, special and loved. Too often because of the symptoms of Sotos Syndrome our children have to deal with bullying and as a result suffer from poor self-esteem. We as parents have to build their confidence up. Think of it as armor so that when bad things happen they can rely on the parental foundation you set up for them. You can't protect them from everything and everyone but you'd be amazed at what a close relationship with their parents can do for their self-esteem.
2. Realize you are NOT alone.
With a diagnosis as rare as Sotos Syndrome it's easy to think that nobody is going to "get it". I was one of those people who thought that but then I started researching. I joined support groups for parents and people living with Sotos Syndrome and I got to talk to people around the globe. People with children just like mine. Adults with Sotos living a life much like my husband. We shared pictures and advice. Talked about milestones reached and prayed for each other when different medical stuff was needed. It didn't take long to realize my family was not alone. Quite the opposite. We were part of community. A community that transcended countries, races, religions, political parties and economic statuses. We were all parents joined by the same thing: Love for our children. There was a genuine support there and we all cared about each other. And in that lies the blessing of Sotos Syndrome: the bringing together of so many people we would have never known otherwise to help celebrate our children and our lives.
3. Invest in a notebook and daily agenda.
I'll tell you now you are going to need it. There is going to be lots of doctors, lots of appointments, perhaps lots of medications, medical bills, insurance claims and you are going to need to be organized. Our children often see lots of different specialists at different locations.I've found that writing everything down helps because it is very easy to get overwhelmed otherwise.
4. Prepare yourself for the great insurance fight.
I don't know about other countries, but in the States our insurance is a huge, but necessary hassle. My biggest suggestion to you is to call your insurance company every time you get a bill. Call on everything. Hospitals are notorious for overcharging, charging exorbitant amounts of money for little things like aspirins, or honest mistakes. Study your insurance plan like you would an exam and then talk to the hospitals about how to go about paying for services that aren't covered by your provider. Find out which hospitals are the most flexible with payment plans and then, if feasible take your children there. Unfortunately, our children often have a lot of health concerns and doctor bills can add up quickly. So the best course of action is to be proactive... trust me, I learned the hard way.
5. Decide how, who, when and if you are going to tell your child or others about Sotos Syndrome.
This is an intensely personal decision and you must weigh the benefits and consequences of letting people and your child know about Sotos Syndrome on your own. Some parents of higher functioning Sotos children choose not to let their children know. My in-laws did that with my husband and I must say there is something to be said for that approach since my husband is an amazing byproduct of that approach. He's got a college degree, great job and a family that adores him. That being said I will be telling Natalie of her condition. But I will not let her be labeled by it. She is Natalie first, our beautiful daughter 2nd, a whole lot of other things in between, and a Sotos child after that. Ultimately the choice is yours.
6. Get your child involved in early intervention programs as soon as possible.
Once again this is a personal decision. However I will say from experience EVERY resource you can get your child helps. I have my daughter involved in a program called First Steps where a physical therapist comes out every week and works with Natalie on her gross motor delays. Some people elect not to accept early intervention programs for various reasons (some times more than others because they don't want to believe there is anything that needs help- I was one of those people too until I agreed to enroll Natalie in first steps and now I can't deny the tremendous help it has been to Natalie's development). I learned I had to suck it up realize that my daughter needed help. Help I couldn't give her on my own. My daughters health and development is more important than my pride in being a parent who knew all about my child and could fix everything on my own.
7. Find the right doctors.
You're going to be seeing them a lot. Make sure they are people you can be comfortable around and that they know what they're doing and that they know about your child. They need to be the type who are proactive and well versed in your child's needs.
8. Enjoy life
You only get one chance to be a parent to your child. One chance to watch them grow. Don't blow it by being sorry for yourself, your child or your situation. Every minute you spend wallowing in self pity, worry or doubt is a minute you could have spent making your child smile. And let me tell you, there is nothing like a child's smile...You can break down later but this time right now belongs to your children so let them see your strength and rely on it. Go places, do things. They may or may not be able to do all the things you used to as a child but don't let that stop you or them from LIVING. Play games together, go on walks, visit zoos, talk about things that interest them, go on vacations. Surround yourself with people that you love that love you and your child back and cherish all the little things that make your life unique. Remember happiness is a choice and children have a knack of watching all the choices you make. So make sure the choices you make are the ones you wouldn't mind them imitating.
1. Take a moment to let the situation sink in, throw yourself a mini pity party if you need to... now get over it.
Preferably as soon as possible because you have a child who needs you. And they need you to be strong. They need you to be advocates for their health. Now more than ever you must show them how important they are to you. How they are valued, cherished, special and loved. Too often because of the symptoms of Sotos Syndrome our children have to deal with bullying and as a result suffer from poor self-esteem. We as parents have to build their confidence up. Think of it as armor so that when bad things happen they can rely on the parental foundation you set up for them. You can't protect them from everything and everyone but you'd be amazed at what a close relationship with their parents can do for their self-esteem.
2. Realize you are NOT alone.
With a diagnosis as rare as Sotos Syndrome it's easy to think that nobody is going to "get it". I was one of those people who thought that but then I started researching. I joined support groups for parents and people living with Sotos Syndrome and I got to talk to people around the globe. People with children just like mine. Adults with Sotos living a life much like my husband. We shared pictures and advice. Talked about milestones reached and prayed for each other when different medical stuff was needed. It didn't take long to realize my family was not alone. Quite the opposite. We were part of community. A community that transcended countries, races, religions, political parties and economic statuses. We were all parents joined by the same thing: Love for our children. There was a genuine support there and we all cared about each other. And in that lies the blessing of Sotos Syndrome: the bringing together of so many people we would have never known otherwise to help celebrate our children and our lives.
3. Invest in a notebook and daily agenda.
I'll tell you now you are going to need it. There is going to be lots of doctors, lots of appointments, perhaps lots of medications, medical bills, insurance claims and you are going to need to be organized. Our children often see lots of different specialists at different locations.I've found that writing everything down helps because it is very easy to get overwhelmed otherwise.
4. Prepare yourself for the great insurance fight.
I don't know about other countries, but in the States our insurance is a huge, but necessary hassle. My biggest suggestion to you is to call your insurance company every time you get a bill. Call on everything. Hospitals are notorious for overcharging, charging exorbitant amounts of money for little things like aspirins, or honest mistakes. Study your insurance plan like you would an exam and then talk to the hospitals about how to go about paying for services that aren't covered by your provider. Find out which hospitals are the most flexible with payment plans and then, if feasible take your children there. Unfortunately, our children often have a lot of health concerns and doctor bills can add up quickly. So the best course of action is to be proactive... trust me, I learned the hard way.
5. Decide how, who, when and if you are going to tell your child or others about Sotos Syndrome.
This is an intensely personal decision and you must weigh the benefits and consequences of letting people and your child know about Sotos Syndrome on your own. Some parents of higher functioning Sotos children choose not to let their children know. My in-laws did that with my husband and I must say there is something to be said for that approach since my husband is an amazing byproduct of that approach. He's got a college degree, great job and a family that adores him. That being said I will be telling Natalie of her condition. But I will not let her be labeled by it. She is Natalie first, our beautiful daughter 2nd, a whole lot of other things in between, and a Sotos child after that. Ultimately the choice is yours.
6. Get your child involved in early intervention programs as soon as possible.
Once again this is a personal decision. However I will say from experience EVERY resource you can get your child helps. I have my daughter involved in a program called First Steps where a physical therapist comes out every week and works with Natalie on her gross motor delays. Some people elect not to accept early intervention programs for various reasons (some times more than others because they don't want to believe there is anything that needs help- I was one of those people too until I agreed to enroll Natalie in first steps and now I can't deny the tremendous help it has been to Natalie's development). I learned I had to suck it up realize that my daughter needed help. Help I couldn't give her on my own. My daughters health and development is more important than my pride in being a parent who knew all about my child and could fix everything on my own.
7. Find the right doctors.
You're going to be seeing them a lot. Make sure they are people you can be comfortable around and that they know what they're doing and that they know about your child. They need to be the type who are proactive and well versed in your child's needs.
8. Enjoy life
You only get one chance to be a parent to your child. One chance to watch them grow. Don't blow it by being sorry for yourself, your child or your situation. Every minute you spend wallowing in self pity, worry or doubt is a minute you could have spent making your child smile. And let me tell you, there is nothing like a child's smile...You can break down later but this time right now belongs to your children so let them see your strength and rely on it. Go places, do things. They may or may not be able to do all the things you used to as a child but don't let that stop you or them from LIVING. Play games together, go on walks, visit zoos, talk about things that interest them, go on vacations. Surround yourself with people that you love that love you and your child back and cherish all the little things that make your life unique. Remember happiness is a choice and children have a knack of watching all the choices you make. So make sure the choices you make are the ones you wouldn't mind them imitating.
What the hell is Sotos Syndrome?
Not too long after the MRI I got a call from my mother-in-law. She informed me that when my husband was about 1 years old he was thought to have had Sotos Syndrome by some specialists. But that they had never told him because they didn't want him to grow up thinking he was limited in what he could achieve. They raised him like all their other boys and never felt the need to tell him about what he was thought to have had. Although I am choosing to let Natalie know about her diagnosis I must admit that how they raised Garret worked. He is an amazing man and father with a college degree and a good job. After watching Natalie go through the things he went through his parents decided to let us know about Sotos Syndrome so we could be prepared and tell our doctors.
I had never heard of Sotos Syndrome before. No one I knew had heard of Sotos Syndrome either. So I did what every parent should never do and looked it up on the internet. Some of the things said about Sotos Syndrome scared the stuffing out of me but then other things started to make sense:
large head.........................................check
very tall.............................................check
Slightly protruding forehead................check
triangular face &nails..........................check
underdeveloped nose &nasal bridge....check
nystagmus..........................................check
enlarged ventricles..............................check
gross motor delay...............................check
constipation........................................check
heart concerns....................................check
prefers her routine...............................check
difficult delivery...................................check
jaundice..............................................check
hypotonia...........................................check
Now if you're reading this, you are probably generally aware of what Sotos Syndrome is. For those of you who don't know I'll give you a general explanation:
Sotos Syndrome is also refered to as Cerebral Gigantism and is extremely rare. It most often occurs sporadically (neither parent has the Sotos Gene) but for people with Sotos Syndrome (like my husband) their chance of having a child with Sotos Syndrome is 50/50. One thing to remember is that range of severity is pretty vast and your child may have some of the symptoms but not others and the degree of which those symptoms occur varies as well. The BIG HUGE thing to remember that Sotos Syndrome itself is not life threatening. There is no cure but doctors take more of a treat the symptoms kind of approach. There is often a learning delay associated with Sotos Syndrome ranging from Severe Mental Retardation to a Mild learning disability (around the same level as someone with dyslexia). Those with the milder form of Sotos go on to lead normal lives, be in mainstream classes, self-sufficient, with families and jobs. And another huge thing to remember is that Sotos Syndrome gets better with age! By the time they are adults things begin to stabilize health wise (this is often contributed to the fact that they have finally quit growing by the time they reached adulthood and a lot of their symptoms occur as a result of their rapid growth- it's tough for a little body to keep up with a growth spurt of a quarter inch a week)
A list of symptoms associated with Sotos Syndrome include:
rapid growth
pointed chin
downward slanting eyes
ADHD
Hypoglycemia
Seizures
phobias
tantrums
compulsions
impulsive behaviors
speech delays
gross motor delays ( like with sitting, crawling and standing in early development)
varying degrees of mental abilities
Scoliosis
Heart defects
Kidney defects
Constipation
Jaundice
a VERY slight increase in developing cancer in childhood
hearing and/or vision problems
hypotonia
clumsiness
underdeveloped nose and/or nasal bridge
Large head size
Extra benign cerebral fluid
Autism
Please keep in mind that if your child is diagnosed with Sotos Syndrome they may have some or most of these symptoms and that the degree in which these symptoms occur varies with each child.
I had never heard of Sotos Syndrome before. No one I knew had heard of Sotos Syndrome either. So I did what every parent should never do and looked it up on the internet. Some of the things said about Sotos Syndrome scared the stuffing out of me but then other things started to make sense:
large head.........................................check
very tall.............................................check
Slightly protruding forehead................check
triangular face &nails..........................check
underdeveloped nose &nasal bridge....check
nystagmus..........................................check
enlarged ventricles..............................check
gross motor delay...............................check
constipation........................................check
heart concerns....................................check
prefers her routine...............................check
difficult delivery...................................check
jaundice..............................................check
hypotonia...........................................check
Now if you're reading this, you are probably generally aware of what Sotos Syndrome is. For those of you who don't know I'll give you a general explanation:
Sotos Syndrome is also refered to as Cerebral Gigantism and is extremely rare. It most often occurs sporadically (neither parent has the Sotos Gene) but for people with Sotos Syndrome (like my husband) their chance of having a child with Sotos Syndrome is 50/50. One thing to remember is that range of severity is pretty vast and your child may have some of the symptoms but not others and the degree of which those symptoms occur varies as well. The BIG HUGE thing to remember that Sotos Syndrome itself is not life threatening. There is no cure but doctors take more of a treat the symptoms kind of approach. There is often a learning delay associated with Sotos Syndrome ranging from Severe Mental Retardation to a Mild learning disability (around the same level as someone with dyslexia). Those with the milder form of Sotos go on to lead normal lives, be in mainstream classes, self-sufficient, with families and jobs. And another huge thing to remember is that Sotos Syndrome gets better with age! By the time they are adults things begin to stabilize health wise (this is often contributed to the fact that they have finally quit growing by the time they reached adulthood and a lot of their symptoms occur as a result of their rapid growth- it's tough for a little body to keep up with a growth spurt of a quarter inch a week)
A list of symptoms associated with Sotos Syndrome include:
rapid growth
pointed chin
downward slanting eyes
ADHD
Hypoglycemia
Seizures
phobias
tantrums
compulsions
impulsive behaviors
speech delays
gross motor delays ( like with sitting, crawling and standing in early development)
varying degrees of mental abilities
Scoliosis
Heart defects
Kidney defects
Constipation
Jaundice
a VERY slight increase in developing cancer in childhood
hearing and/or vision problems
hypotonia
clumsiness
underdeveloped nose and/or nasal bridge
Large head size
Extra benign cerebral fluid
Autism
Please keep in mind that if your child is diagnosed with Sotos Syndrome they may have some or most of these symptoms and that the degree in which these symptoms occur varies with each child.
Something's Not Quite Right
"She seems like she's a happy little thing but there's a few things that concern me." ...
...
....
...... It was her 6 month appointment and the doctor had already started adding a list of things she was concerned about. The list was growing with each passing appointment and I wanted to scream: She's fine, she's happy, she smiles. There's NOTHING wrong with my baby. But in the back of my mind I knew that in some ways she was different from my friends' little ones who were sitting up and rolling. She was MUCH taller than the little one's her age but her dad was every bit 6 foot 6. It just seemed to take her awhile to learn some gross motor things but surely it wasn't that big of a deal. Kids grow at different rates, right? I was all about just letting the doctor ramble on about her concerns and not listening because I wanted to believe she was a normal baby, just a little tall for her age until the doctor said "and this might be caused by a tumor behind the eye. I want to send you to a specialist and have an MRI scheduled."
Now when you are a mom, one of the worst things you can hear is that your child might have a tumor. It was hard for me to not break down right there because this wasn't the first time I had heard the word tumor that week. My husband had went in to have a routine vasectomy (We had a VERY hard time getting pregnant and delivering Natalie so we had made the decision to just have one biological child and adopt the rest) and during the vasectomy they had discovered what appeared to be a testicular tumor and would have to go under the knife a second time to have it removed. My family's health was falling apart around me and I could no longer deny that there was something not quite right. So we ended up seeing an ophthalmologist, who quickly diagnosed Natalie with a Nystagmus and sent us on our way to the hospital to get an MRI.
I'll just say it: I HATE hospitals. They are sterile, cold and depressing and I have too many memories of sleeping in waiting rooms and praying in the chapel that loved ones will pull through. The thought of my little 6 month old already having to deal with doctors and machines pissed me off. The thought of sitting in that waiting room waiting to hear news about my child pissed me off even more. But more than being pissed off I was Scared. Mind numbingly scared. Natalie is the most cherished, loved and adored person of mine and my husband's entire life and we fought like hell to get her here. She was going to stay here, be healthy, live a long happy successful life and like hell if anyone told us otherwise.
A few weeks later we got the results of the MRI. NO TUMOR! We were ecstatic about that but then the doctor kept talking and started adding to the list of new concerns... there seemed to be a little excess fluid on the brain, some white matter loss, a very small bleed on the brain (they were certain that would not be a problem and was caused by the rough delivery of our daughter) and enlarged ventricles... white matter loss? Enlarged Ventricles? and a lot of other medical mumbo jumbo thrown in quickly turned my elation over the lack of a tumor to uneasy confusion over the host of new issues this doctor had brought up. What did this mean for my daughter? Was she ok? ... the ophthalmologist while well versed in matters of the eye was less than useless when it came to the brain so he sent us to the next specialist: a neurologist in the children's hospital.
...
....
...... It was her 6 month appointment and the doctor had already started adding a list of things she was concerned about. The list was growing with each passing appointment and I wanted to scream: She's fine, she's happy, she smiles. There's NOTHING wrong with my baby. But in the back of my mind I knew that in some ways she was different from my friends' little ones who were sitting up and rolling. She was MUCH taller than the little one's her age but her dad was every bit 6 foot 6. It just seemed to take her awhile to learn some gross motor things but surely it wasn't that big of a deal. Kids grow at different rates, right? I was all about just letting the doctor ramble on about her concerns and not listening because I wanted to believe she was a normal baby, just a little tall for her age until the doctor said "and this might be caused by a tumor behind the eye. I want to send you to a specialist and have an MRI scheduled."
Now when you are a mom, one of the worst things you can hear is that your child might have a tumor. It was hard for me to not break down right there because this wasn't the first time I had heard the word tumor that week. My husband had went in to have a routine vasectomy (We had a VERY hard time getting pregnant and delivering Natalie so we had made the decision to just have one biological child and adopt the rest) and during the vasectomy they had discovered what appeared to be a testicular tumor and would have to go under the knife a second time to have it removed. My family's health was falling apart around me and I could no longer deny that there was something not quite right. So we ended up seeing an ophthalmologist, who quickly diagnosed Natalie with a Nystagmus and sent us on our way to the hospital to get an MRI.
I'll just say it: I HATE hospitals. They are sterile, cold and depressing and I have too many memories of sleeping in waiting rooms and praying in the chapel that loved ones will pull through. The thought of my little 6 month old already having to deal with doctors and machines pissed me off. The thought of sitting in that waiting room waiting to hear news about my child pissed me off even more. But more than being pissed off I was Scared. Mind numbingly scared. Natalie is the most cherished, loved and adored person of mine and my husband's entire life and we fought like hell to get her here. She was going to stay here, be healthy, live a long happy successful life and like hell if anyone told us otherwise.
A few weeks later we got the results of the MRI. NO TUMOR! We were ecstatic about that but then the doctor kept talking and started adding to the list of new concerns... there seemed to be a little excess fluid on the brain, some white matter loss, a very small bleed on the brain (they were certain that would not be a problem and was caused by the rough delivery of our daughter) and enlarged ventricles... white matter loss? Enlarged Ventricles? and a lot of other medical mumbo jumbo thrown in quickly turned my elation over the lack of a tumor to uneasy confusion over the host of new issues this doctor had brought up. What did this mean for my daughter? Was she ok? ... the ophthalmologist while well versed in matters of the eye was less than useless when it came to the brain so he sent us to the next specialist: a neurologist in the children's hospital.
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