Help me find Peace
For the first time I’m asking for your help in my blog. After work today, we will pack up the kids and travel to Omaha, NE. Tomorrow Samantha will do a full round of body x-rays, bone density tests, hearing, teeth, PT, OT, ortho surgeon, the whole shebang. It’s her annual trip to the Children’s Hospital in Omaha for their OI Clinic (Osteogenesis Imperfecta – brittle bone disease) but this year we’ve been battling more pain in her little legs and therefore have more concerns to think about.
What we need is peace in our hearts and minds. The prospect of yet another set of surgeries for rodding isn’t too far off and weighs heavy on all of us. Of course Sami is scared. And my chest hurts seeing her in physical and emotional pain.
If you haven’t heard, rodding is the procedure of breaking the bones in various spots, straightening them out, and drilling holes into each section to place an expandable rod (like a telescope) in. The bones are supposed to grow around the rods, except Sami’s leg bones like to bow and are doing it even though the rods are in. This makes them less able to help the fractures that already occur because they aren’t as stable.
Type III OI is very rare, and really, Sami’s life is a miracle and an experiment. What is difficult is the unknown … will another surgery give her more stability for 4-5 years? Will the pain of the surgery outweigh the benefits? Is this her pain for the rest of her life? Is she better off in the wheelchair or crawling on the floor? Will the weight on her legs bring more lower back problems? I DON’T KNOW! And I can’t feel like we’re making the right decisions. I’m not naturally a gambler and the experts don’t have certain answers with her.
Please think about, pray, meditate, and send good vibes to us tomorrow while we are at the clinic. We need peace to make the best decisions for Sami and she needs faith that she’ll be alright.
Thank you !!!
Heather
www.oif.org for more info on OI.
Wednesday, September 2, 2009
Friday, August 28, 2009
School Review
8-28-09
School Review
“An investment in knowledge always pays the best interest.”
―Benjamin Franklin
Now that school has started, I wanted to recap a few things for everyone. If you want the full articles you can check out the previous blog entries or drop me a line. I’m very pro-education and have tremendous respect for those people who dedicate their lives to our kids. Teachers work 60+ hours a week for little pay and benefits. And for those in the special education world it’s even more time and effort.
As a parent of two special needs kids I want their school year to be as smooth as possible. Today I’m on potty patrol. Sami has an injured arm, leg, and hip so getting on and off the potty is a fragile weight lifting dance. I’m very thankful I have an employer who understands I need to leave when the school calls (and nature calls). I could be bitchy and demand the school deal with things, but I’d rather be flexible now so when I do ask for big things they are more likely to accommodate us.
If you or someone you know is new to the SPED world, here are some tips:
An IEP is an Individual Education Plan. This plan came out of the Individuals with Disabilities Act (IDEA). It is the framework for your child’s day at school and the services they need to receive. Your child must qualify under state and federal criteria to have an IEP; it’s not just a given because they have a disability (this means a day’s worth of testing). All decisions for your child are made by the IEP team which consists of parents, teachers, therapists, a case manager (usually the special education teacher), and a district representative (usually an administrator in the building). No decisions can be made, or actions taken, without the signatures and agreement of every person on the team.
If you have ANY concerns, thoughts, or ideas, you MUST speak up during the meeting and have it documented. This isn’t the time for shyness. Be calm, clear, and open to suggestions. Work with the district to find compromises and solutions. You know your child best and the staff needs to know what tricks work best with your child. Make a list and bring it to the meetings. If he or she needs some quiet time every two hours, then say that. Most likely, your school can provide a space within a classroom or library for some quiet time. If your kiddo does better with a snack in the afternoon, you may have to provide the snack, but they can find a place and time to give it. If he or she needs a special bus for transportation to and from home or daycare, you need to be upfront about it. Does your kid have a special routine at home? If so, let everyone know it and they can try to mirror some of it at school, while you change your home routine to fit the school’s normal activities (eat at same time, quiet time, etc….). Everyone involved is going to have to COMPROMISE, including your child.
A 504 is actually Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law to protect people with disabilities from discrimination because of their disability. There should be a 504 coordinator (usually a vise principal or counselor, but probably not the special education teacher) and a team like the IEP team to help with the accommodations. Notice that a 504 is not something that guarantees your kid will have an IEP. This is separate. A 504 is basic accommodations to help override impairment so your child can have the same public education as everyone else….this is not an individualized plan for educational learning…in other words, this is not to accommodate mental or emotional disabilities that effect learning, but accommodations for physical surroundings. For example: your child is deaf in their left ear. They can have a 504 plan that states they need to sit in a certain spot in the classroom. That’s it. The kid then has to perform up to the teacher’s standards and receive the grades they earned like everyone else.
I have one child with each plan. My son with Aspergers has an IEP, and my daughter with brittle bones has a 504, of which will follow them to college if need be. They both have an adapted day at school with special services. Both plans look and work very similar, but the legal paperwork is slightly different.
In most states, there are programs for children ages 0-3 where you can begin therapies (First Steps, Early Intervention, etc.). You can ask about these at your County Health Department. Starting at age 3, most school districts have an Early Childhood Program you can begin the legal IEP/504 process with to receive therapy and additional help in a half day pre-school class.
To continue our vocabulary lesson, “LRE” is Least Restrictive Environment. This is the biggest stickler and fighting point you’ll read or hear about from other SPED parents. The concept is to place your child in a situation that is the least restrictive for their learning = where they can blossom the most. Each child’s abilities will determine their own LRE. Here are a few different scenarios:
*In most cases, LRE means spending most of the school day in the regular education classroom, like everyone else, with some accommodations. That is called “mainstreaming” or “inclusive”. The accommodations could be as simple as having an aid to help with motor skills or a certain seat.
*The LRE could mean being pulled out of their normal classroom for some special classes in another room (usually the SPED room or a “resource” room) a few times a day or week, working on specific skills. For example: a child with Aspergers may be pulled out to work on social skills with a small group.
*For some, the LRE is being in the SPED room with 2-4 other children for all day specialized instruction. This is a “self-contained class”. They also can integrate into a regular class for story time, recess, etc…
*Finally, there are some children who need an alternative school. You need to check your fears in place here – you heard “alternative school” and your anxiety raised – don’t think I don’t know. It’s not the fault of you or the child, but their actions may not make it best for your child to be in a regular school. The alternative schools can provide even more attention as they do not have to educate the masses of kids in the district.
The number one fact you must understand is that school districts have budgets just like you and me. And there is always more needs, kids, and school days than there is money. Right now many districts are doing some major shuffling to keep as many services as they can.
There is a huge difference between letting your child fail in order to learn how to get back up and not giving your child the tools to succeed. The school district is required to provide adequate tools for your child but they can’t make your child use the tools or to bend the rules so your child gets an “A”.
My recommendation is to make sure you are assigned to a seasoned teacher ….someone who isn’t on their first or second year. New teachers are full of life and ideas, but since they don’t have a routine down yet, they are making frequent changes in the school day routine to see what works for them and that’s not good for SPED kids. I’m not doubting their abilities as teachers, I’m just being practical.
If your child has a mental, emotional or social disability I suggest asking for a Triage each morning with a staff member. During this morning meeting, your child will find out if they have a substitute teacher, if the day will look different (fire drill), organize the papers in their backpacks, and see how their mood is. If they are in a funk mood, there is no point in continuing onto class and getting in trouble. The triage can halt the negative pattern so they can be successful the rest of the day. It could be any teacher in the building, but the SPED teacher would be ideal. He or she can then relate your child’s moods to the rest of the team and do extra checks on your kid if necessary that day. I, personally, love the triage for my son each morning. There was a huge difference in his daily success rate once we started the triage process. Wish I had thought of it sooner!
I hope your school year is fabulous, your child receives a superb education, and you are able to take more time in caring for yourself as a priority. I’m drinking the last bits of my Quik Trip Hot Chocolate and Almond Amaretto Cappuccino combo. It’s been a long week of injuries and sleepless nights for all of us and the $1.28 I spent at QT this morning was a welcome treat for me. I better hit the potty myself before Sami calls :)
All my best,
Heather
School Review
“An investment in knowledge always pays the best interest.”
―Benjamin Franklin
Now that school has started, I wanted to recap a few things for everyone. If you want the full articles you can check out the previous blog entries or drop me a line. I’m very pro-education and have tremendous respect for those people who dedicate their lives to our kids. Teachers work 60+ hours a week for little pay and benefits. And for those in the special education world it’s even more time and effort.
As a parent of two special needs kids I want their school year to be as smooth as possible. Today I’m on potty patrol. Sami has an injured arm, leg, and hip so getting on and off the potty is a fragile weight lifting dance. I’m very thankful I have an employer who understands I need to leave when the school calls (and nature calls). I could be bitchy and demand the school deal with things, but I’d rather be flexible now so when I do ask for big things they are more likely to accommodate us.
If you or someone you know is new to the SPED world, here are some tips:
An IEP is an Individual Education Plan. This plan came out of the Individuals with Disabilities Act (IDEA). It is the framework for your child’s day at school and the services they need to receive. Your child must qualify under state and federal criteria to have an IEP; it’s not just a given because they have a disability (this means a day’s worth of testing). All decisions for your child are made by the IEP team which consists of parents, teachers, therapists, a case manager (usually the special education teacher), and a district representative (usually an administrator in the building). No decisions can be made, or actions taken, without the signatures and agreement of every person on the team.
If you have ANY concerns, thoughts, or ideas, you MUST speak up during the meeting and have it documented. This isn’t the time for shyness. Be calm, clear, and open to suggestions. Work with the district to find compromises and solutions. You know your child best and the staff needs to know what tricks work best with your child. Make a list and bring it to the meetings. If he or she needs some quiet time every two hours, then say that. Most likely, your school can provide a space within a classroom or library for some quiet time. If your kiddo does better with a snack in the afternoon, you may have to provide the snack, but they can find a place and time to give it. If he or she needs a special bus for transportation to and from home or daycare, you need to be upfront about it. Does your kid have a special routine at home? If so, let everyone know it and they can try to mirror some of it at school, while you change your home routine to fit the school’s normal activities (eat at same time, quiet time, etc….). Everyone involved is going to have to COMPROMISE, including your child.
A 504 is actually Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law to protect people with disabilities from discrimination because of their disability. There should be a 504 coordinator (usually a vise principal or counselor, but probably not the special education teacher) and a team like the IEP team to help with the accommodations. Notice that a 504 is not something that guarantees your kid will have an IEP. This is separate. A 504 is basic accommodations to help override impairment so your child can have the same public education as everyone else….this is not an individualized plan for educational learning…in other words, this is not to accommodate mental or emotional disabilities that effect learning, but accommodations for physical surroundings. For example: your child is deaf in their left ear. They can have a 504 plan that states they need to sit in a certain spot in the classroom. That’s it. The kid then has to perform up to the teacher’s standards and receive the grades they earned like everyone else.
I have one child with each plan. My son with Aspergers has an IEP, and my daughter with brittle bones has a 504, of which will follow them to college if need be. They both have an adapted day at school with special services. Both plans look and work very similar, but the legal paperwork is slightly different.
In most states, there are programs for children ages 0-3 where you can begin therapies (First Steps, Early Intervention, etc.). You can ask about these at your County Health Department. Starting at age 3, most school districts have an Early Childhood Program you can begin the legal IEP/504 process with to receive therapy and additional help in a half day pre-school class.
To continue our vocabulary lesson, “LRE” is Least Restrictive Environment. This is the biggest stickler and fighting point you’ll read or hear about from other SPED parents. The concept is to place your child in a situation that is the least restrictive for their learning = where they can blossom the most. Each child’s abilities will determine their own LRE. Here are a few different scenarios:
*In most cases, LRE means spending most of the school day in the regular education classroom, like everyone else, with some accommodations. That is called “mainstreaming” or “inclusive”. The accommodations could be as simple as having an aid to help with motor skills or a certain seat.
*The LRE could mean being pulled out of their normal classroom for some special classes in another room (usually the SPED room or a “resource” room) a few times a day or week, working on specific skills. For example: a child with Aspergers may be pulled out to work on social skills with a small group.
*For some, the LRE is being in the SPED room with 2-4 other children for all day specialized instruction. This is a “self-contained class”. They also can integrate into a regular class for story time, recess, etc…
*Finally, there are some children who need an alternative school. You need to check your fears in place here – you heard “alternative school” and your anxiety raised – don’t think I don’t know. It’s not the fault of you or the child, but their actions may not make it best for your child to be in a regular school. The alternative schools can provide even more attention as they do not have to educate the masses of kids in the district.
The number one fact you must understand is that school districts have budgets just like you and me. And there is always more needs, kids, and school days than there is money. Right now many districts are doing some major shuffling to keep as many services as they can.
There is a huge difference between letting your child fail in order to learn how to get back up and not giving your child the tools to succeed. The school district is required to provide adequate tools for your child but they can’t make your child use the tools or to bend the rules so your child gets an “A”.
My recommendation is to make sure you are assigned to a seasoned teacher ….someone who isn’t on their first or second year. New teachers are full of life and ideas, but since they don’t have a routine down yet, they are making frequent changes in the school day routine to see what works for them and that’s not good for SPED kids. I’m not doubting their abilities as teachers, I’m just being practical.
If your child has a mental, emotional or social disability I suggest asking for a Triage each morning with a staff member. During this morning meeting, your child will find out if they have a substitute teacher, if the day will look different (fire drill), organize the papers in their backpacks, and see how their mood is. If they are in a funk mood, there is no point in continuing onto class and getting in trouble. The triage can halt the negative pattern so they can be successful the rest of the day. It could be any teacher in the building, but the SPED teacher would be ideal. He or she can then relate your child’s moods to the rest of the team and do extra checks on your kid if necessary that day. I, personally, love the triage for my son each morning. There was a huge difference in his daily success rate once we started the triage process. Wish I had thought of it sooner!
I hope your school year is fabulous, your child receives a superb education, and you are able to take more time in caring for yourself as a priority. I’m drinking the last bits of my Quik Trip Hot Chocolate and Almond Amaretto Cappuccino combo. It’s been a long week of injuries and sleepless nights for all of us and the $1.28 I spent at QT this morning was a welcome treat for me. I better hit the potty myself before Sami calls :)
All my best,
Heather
Friday, August 14, 2009
Recieve graciously
Receive graciously
Do you feel that asking for help means you are weak? That you are a failure as a parent because you can’t take care of your kids by yourself? That’s what I used to think. I’ve been independent natured since I was a child and didn’t understand those people who stayed close to home to be near their families as adults. Now I see that I’ve missed out on a lot of support over the years.
No matter if you like Hillary Clinton or not, she was right that it does take a village to raise a child. You need a group of different personalities, different talents, all shapes, sizes, and ages, to support each other. Sharing responsibilities and gifts helps all of the people rise up to their very best.
So what do you do if your family isn’t close by? Gather up some girlfriends, reach out to the school, get in touch with the charities.
Speaking of charities…..Since you were blessed with children that have a few special needs (irony is dripping), be sure to sign up for the wonderful things charities offer. Turn your situation into a positive experience. Make A Wish, The Dream Factory, The Shriners, Easter Seals, and many others can help you out with all kinds of things for your children. Dream vacations, hot tubs for therapy, elevators, new van with chair lift, whatever you need for your child, there is probably a charity that can help you get it. You aren’t alone and it’s okay to ask for help! The people who work for the charities want to give back to those who need a few more blessings – and that’s you! It’s a win-win for both sides. By accepting their wonderful charity gifts of time and money, you are giving to their need of filling their own self worth, and the world keeps spinning. The best thing is if you are then able to pay your blessings forward to another mom who needs help.
The places to check for charities:
-children’s hospitals
-social workers
-county health departments
-city/state/federal governments
-Easter Seals
-Give Kids the World
-a business that has a product you need (many will donate)
-Chamber of Commerce
-organizations/foundations for your child’s diagnosis
-churches
-librarians are amazing at finding resources
-SPED department at your school district
-SPED department of the teaching colleges
Point is, there’s no reason to be stubborn and do everything by yourself….how is that making a positive impact on you or your child? Take what the world has to offer because you are contributing to the world. Give to the next person, even if it’s just a truly warm smile – it will come back to you – and you can pay it forward again. Just by surviving each day with a positive attitude, you are giving others hope and purpose in their lives, so let them give to you. Receive graciously. Smile and say “Thank You”. Be simple. No gushing. Put meaning into those two words. Let them give, let yourself receive.
Do you feel that asking for help means you are weak? That you are a failure as a parent because you can’t take care of your kids by yourself? That’s what I used to think. I’ve been independent natured since I was a child and didn’t understand those people who stayed close to home to be near their families as adults. Now I see that I’ve missed out on a lot of support over the years.
No matter if you like Hillary Clinton or not, she was right that it does take a village to raise a child. You need a group of different personalities, different talents, all shapes, sizes, and ages, to support each other. Sharing responsibilities and gifts helps all of the people rise up to their very best.
So what do you do if your family isn’t close by? Gather up some girlfriends, reach out to the school, get in touch with the charities.
Speaking of charities…..Since you were blessed with children that have a few special needs (irony is dripping), be sure to sign up for the wonderful things charities offer. Turn your situation into a positive experience. Make A Wish, The Dream Factory, The Shriners, Easter Seals, and many others can help you out with all kinds of things for your children. Dream vacations, hot tubs for therapy, elevators, new van with chair lift, whatever you need for your child, there is probably a charity that can help you get it. You aren’t alone and it’s okay to ask for help! The people who work for the charities want to give back to those who need a few more blessings – and that’s you! It’s a win-win for both sides. By accepting their wonderful charity gifts of time and money, you are giving to their need of filling their own self worth, and the world keeps spinning. The best thing is if you are then able to pay your blessings forward to another mom who needs help.
The places to check for charities:
-children’s hospitals
-social workers
-county health departments
-city/state/federal governments
-Easter Seals
-Give Kids the World
-a business that has a product you need (many will donate)
-Chamber of Commerce
-organizations/foundations for your child’s diagnosis
-churches
-librarians are amazing at finding resources
-SPED department at your school district
-SPED department of the teaching colleges
Point is, there’s no reason to be stubborn and do everything by yourself….how is that making a positive impact on you or your child? Take what the world has to offer because you are contributing to the world. Give to the next person, even if it’s just a truly warm smile – it will come back to you – and you can pay it forward again. Just by surviving each day with a positive attitude, you are giving others hope and purpose in their lives, so let them give to you. Receive graciously. Smile and say “Thank You”. Be simple. No gushing. Put meaning into those two words. Let them give, let yourself receive.
Friday, August 7, 2009
Be Still
Be still.
Being still is very hard for me. Activity is addicting. I jump from one task to another and it almost gives me a high. Checking things off a list makes me feel like I accomplished something. It also allows me to hide from myself and everyone else. I lose myself in the tasks that need to be done and don’t have time to deal with the highs and lows of life.
What I have learned is that I need to be still. I need to let other people do things for themselves as much as possible. I have to consider giving less to others and doing less for them. UGH! That seems insurmountable since my kids have huge limitations on what is possible for them to mentally and physically do….and it’s so much faster and less aggravating if I just do it myself…..and I can be a martyr and receive accolades of high public opinion of myself.
Ah, but there isn’t a high public opinion. The irony is I found there’s a lot of pity. Many “I don’t know how you do it” statements. Far too many “You’re much stronger than I”. And honestly, there was a lot of resentment on my part for not having a rescuer. Couldn’t people see how much I was doing and volunteer to jump in? Pity is the opposite of the high opinion I was looking for in the first place.
I now know that I did this to myself. I was out to prove how grown up and independent I was. I stubbornly refused help when I know I could have it had I just asked. I’ve been “the pleaser” my whole life. But my new mantra is DON’T DO FOR OTHERS THINGS THAT THEY’RE CAPABLE OF DOING FOR THEMSELVES. I’m not the fire department. I’m not the go-to person. If it’s going to make me resentful, I’m not going to do it. My time is just as important.
This isn’t about being mean to others. I love doing random acts of kindness! This is about me running my tail off until I collapse each day. Being busy has a lot to do with feeling as if you are earning your keep. It’s being afraid that if you aren’t doing chores = you are lazy. Check to see if rushing is just a habit of yours. You can’t control others, but you can control your energy reserves by taking care of yourself. When you are taking care of you, you then have the energy to do some amazing acts of kindness for others. You can overflow your pleasure when you are filled.
I’ve been purposely and consciously making myself sit and relax in the evenings. Very hard to do when I know there are 2.5 million things that need to get done around the house. I talk to myself, “You have the right to read a magazine”, “The Queen of England is not coming to your house”, “Those who judge you aren’t worthy of your consideration”, “What do you really WANT to do?”
So, if you come to my house, it won’t be as spit spot clean as it used to be, but I also won’t be as anxious or tired. You’ll get the best of me and I’ll be glad to have you over.
Heather
Being still is very hard for me. Activity is addicting. I jump from one task to another and it almost gives me a high. Checking things off a list makes me feel like I accomplished something. It also allows me to hide from myself and everyone else. I lose myself in the tasks that need to be done and don’t have time to deal with the highs and lows of life.
What I have learned is that I need to be still. I need to let other people do things for themselves as much as possible. I have to consider giving less to others and doing less for them. UGH! That seems insurmountable since my kids have huge limitations on what is possible for them to mentally and physically do….and it’s so much faster and less aggravating if I just do it myself…..and I can be a martyr and receive accolades of high public opinion of myself.
Ah, but there isn’t a high public opinion. The irony is I found there’s a lot of pity. Many “I don’t know how you do it” statements. Far too many “You’re much stronger than I”. And honestly, there was a lot of resentment on my part for not having a rescuer. Couldn’t people see how much I was doing and volunteer to jump in? Pity is the opposite of the high opinion I was looking for in the first place.
I now know that I did this to myself. I was out to prove how grown up and independent I was. I stubbornly refused help when I know I could have it had I just asked. I’ve been “the pleaser” my whole life. But my new mantra is DON’T DO FOR OTHERS THINGS THAT THEY’RE CAPABLE OF DOING FOR THEMSELVES. I’m not the fire department. I’m not the go-to person. If it’s going to make me resentful, I’m not going to do it. My time is just as important.
This isn’t about being mean to others. I love doing random acts of kindness! This is about me running my tail off until I collapse each day. Being busy has a lot to do with feeling as if you are earning your keep. It’s being afraid that if you aren’t doing chores = you are lazy. Check to see if rushing is just a habit of yours. You can’t control others, but you can control your energy reserves by taking care of yourself. When you are taking care of you, you then have the energy to do some amazing acts of kindness for others. You can overflow your pleasure when you are filled.
I’ve been purposely and consciously making myself sit and relax in the evenings. Very hard to do when I know there are 2.5 million things that need to get done around the house. I talk to myself, “You have the right to read a magazine”, “The Queen of England is not coming to your house”, “Those who judge you aren’t worthy of your consideration”, “What do you really WANT to do?”
So, if you come to my house, it won’t be as spit spot clean as it used to be, but I also won’t be as anxious or tired. You’ll get the best of me and I’ll be glad to have you over.
Heather
Friday, July 31, 2009
The Positives
Being Positive
“I’m not afraid of storms, for I’m learning to sail my ship.”
-Louisa May Alcott
As I was sitting in the hospital one day, as happened a lot when my daughter was younger, another mom came in and we started chatting. Her daughter has a feeding tube button, as well as needed dialysis weekly because her kidneys were dying. The sad part was that a transplant wasn’t feasible since it had been tried before and rejected. This little girl was a spit fire! Personality oozed out of her every pore. At that moment I was the most grateful mother on the planet!
The funny thing was, the other mom thought the same thing about me and my child. “At least I can hold my child and never fear of hurting her” she told me.
Perspective is a strange bed fellow! We each have our own (like opinions and ass holes, isn’t that how it goes?). Spending time in a children’s hospital will always show you a family who is going through something worse than you, and it’s humbling. On the flip side, we don’t always know we are an inspiration to others…we’re just living our daily lives the best we can. I sure am inspired and humbled by all you other moms!! It’s okay to be grateful for how lucky you are. To say “Thank God my child doesn’t have that!” (Hell, I do that in regards to some “average”, yet very bratty, kids and their overscheduled weeks.)
I think many of us are so used to working ourselves to the bone within our own special needs world that we forget to find the pleasure of life outside. We are looking back to fix the past and we miss out on the wonderful future that is ahead. What are some positives about your child’s diagnosis and your family situation? What are you grateful for in your life? What can you step back from and laugh at? Make a list (or lists) and keep it where you can see it first thing in the morning and last thing at night. You can’t change a diagnosis but you can change your perspective.
Here are just a few things on my “I’m so grateful for” kid list:
*If your daughter is in a wheelchair, you don’t have to worry about her butt cheeks hanging out or her tummy showing.
*Wheelchairs limit access to go with friends, so I’ll have to transport her to and from places and always know where she is.
*My Asperger kid likes quiet play so I can have time to make dinner.
*PT can wear my kids out so I could get lucky and get a nap in on the weekends.
*Since neither child is really sports inclined, I’m not running to practice all week and tournaments on the weekends. Saves me money and headaches!
Another positive of having SPED kids – I understand the fragileness that life is. We’ve been put in the life or death situation more than once. Time is precious and I don’t have to waste it on dumb things – I have a ready-made excuse. High maintenance friends are gone, committee memberships I felt I had to do are over, and I just send a check for school fundraisers and don’t bother doing them at all. Mask on me first, my kids second, then everything else in priority order. I also don’t have to watch the sappy movies to remind myself to be grateful for my life: I can open my kids’ doors at night and watch them sleep for that.
The rough days will come and sometimes it’s very hard to see the positives when you’re in the middle of a life melt down. That’s when you will need to find a mantra, or a few mantras, to say to yourself as a reminder of your strength, your courage, and your pleasure in life. Say it over and over until you believe it every day. Some of mine are “This too shall pass”, “I am the rock”, “Slow, calm, smooth”, “Abundant wealth”, and “Live, Love, Laugh”.
When the day is done and you survived outstandingly well (which simply means everyone is still alive) you can reward yourself with your favorite positive pleasure. Pat yourself on the back for a job well done. Give yourself all the kudos you deserve. Brag on you! Toot your own horn! Lavish in self pride. Another day is coming and you need to start it off as positive as you can.
Sending positive vibes to you,
Heather
“I’m not afraid of storms, for I’m learning to sail my ship.”
-Louisa May Alcott
As I was sitting in the hospital one day, as happened a lot when my daughter was younger, another mom came in and we started chatting. Her daughter has a feeding tube button, as well as needed dialysis weekly because her kidneys were dying. The sad part was that a transplant wasn’t feasible since it had been tried before and rejected. This little girl was a spit fire! Personality oozed out of her every pore. At that moment I was the most grateful mother on the planet!
The funny thing was, the other mom thought the same thing about me and my child. “At least I can hold my child and never fear of hurting her” she told me.
Perspective is a strange bed fellow! We each have our own (like opinions and ass holes, isn’t that how it goes?). Spending time in a children’s hospital will always show you a family who is going through something worse than you, and it’s humbling. On the flip side, we don’t always know we are an inspiration to others…we’re just living our daily lives the best we can. I sure am inspired and humbled by all you other moms!! It’s okay to be grateful for how lucky you are. To say “Thank God my child doesn’t have that!” (Hell, I do that in regards to some “average”, yet very bratty, kids and their overscheduled weeks.)
I think many of us are so used to working ourselves to the bone within our own special needs world that we forget to find the pleasure of life outside. We are looking back to fix the past and we miss out on the wonderful future that is ahead. What are some positives about your child’s diagnosis and your family situation? What are you grateful for in your life? What can you step back from and laugh at? Make a list (or lists) and keep it where you can see it first thing in the morning and last thing at night. You can’t change a diagnosis but you can change your perspective.
Here are just a few things on my “I’m so grateful for” kid list:
*If your daughter is in a wheelchair, you don’t have to worry about her butt cheeks hanging out or her tummy showing.
*Wheelchairs limit access to go with friends, so I’ll have to transport her to and from places and always know where she is.
*My Asperger kid likes quiet play so I can have time to make dinner.
*PT can wear my kids out so I could get lucky and get a nap in on the weekends.
*Since neither child is really sports inclined, I’m not running to practice all week and tournaments on the weekends. Saves me money and headaches!
Another positive of having SPED kids – I understand the fragileness that life is. We’ve been put in the life or death situation more than once. Time is precious and I don’t have to waste it on dumb things – I have a ready-made excuse. High maintenance friends are gone, committee memberships I felt I had to do are over, and I just send a check for school fundraisers and don’t bother doing them at all. Mask on me first, my kids second, then everything else in priority order. I also don’t have to watch the sappy movies to remind myself to be grateful for my life: I can open my kids’ doors at night and watch them sleep for that.
The rough days will come and sometimes it’s very hard to see the positives when you’re in the middle of a life melt down. That’s when you will need to find a mantra, or a few mantras, to say to yourself as a reminder of your strength, your courage, and your pleasure in life. Say it over and over until you believe it every day. Some of mine are “This too shall pass”, “I am the rock”, “Slow, calm, smooth”, “Abundant wealth”, and “Live, Love, Laugh”.
When the day is done and you survived outstandingly well (which simply means everyone is still alive) you can reward yourself with your favorite positive pleasure. Pat yourself on the back for a job well done. Give yourself all the kudos you deserve. Brag on you! Toot your own horn! Lavish in self pride. Another day is coming and you need to start it off as positive as you can.
Sending positive vibes to you,
Heather
Thursday, July 16, 2009
Anti-depressants
Anti-depressants
Today is an extra personal blog. Last week I started on anti-depressants. This was a HUGE deal for me! I don’t even take aspirin. I decided to take my mental health as serious as my body health because my relationships with myself and my family were, I felt, at the bottom of the barrel. I tried many different tactics to pull myself out of my funk, but time, money, and commitments are factors that are fixed. Shopping, alcohol, and endless hours at the gym weren’t going to help my family and sneaking in an hour at Target just wasn’t cutting it.
I tried my hardest to be “the super mom” and I’m happy to say that I failed. My expectations of myself and the expectations others have for mothers is ridiculous.
Depression doesn’t mean that you are in a ball on the floor of your closet sobbing 24/7, though it can be that. There were many moments over the years that I was very happy. But the underlying feeling of being overwhelmed was a constant low vibration within me. Two special needs kids, a husband, a job, a house, family and friends. Pleasing them all didn’t leave any room for taking care of me. And quite frankly, no one else was taking care of me either because I didn’t ask them too. When the help didn’t magically come I thought I wasn’t worthy of their consideration, and deeper I sank into the barrel.
I’ve also felt, and heard from other friends, that admitting you’re on anti-depressants means you are weak and can’t handle things. No it doesn’t. It means that there are stressors in your life that are blocking your brain chemicals and you just need to help re-wire a few things to run more smooth. Depression usually runs in families, whether or not anyone admits to it. And let’s face it, raising special needs kids means you need more help anyway. Our society, and the insistence of independence away from the village, is killing mothers. Moms are the highest ranked group of people in the world of depression, only above divorced dads. So, obviously, you are not weak, you are human. Not super human, but average.
The two medications I’m on are supposed to:
1. Help my brain shut off at night so I can sleep and
2. Even out my moods during the day.
It’s only been one week and I honestly can’t say either is working so far but that is expected. It takes at least a month for the meds to start their best work in your system. I will say that my body has felt like lead, very heavy limbs, for the first few days and I’ve been yawning all day every day but the symptoms are lessening as each day passes. In a funny way, I’ve been so “hung over” that I haven’t cared about much, so perversely the anti-anxiety drugs are working. I’m a bit slower and more easy-going. Always a way to make a silver lining!!
I share this experience with you because I want you to know that you aren’t alone. Hope is there in many different forms. There are many of us out there who can answer your questions and give you support, no matter what you are going through. I will keep you updated on my progress. Take care of the whole you!
Heather
Today is an extra personal blog. Last week I started on anti-depressants. This was a HUGE deal for me! I don’t even take aspirin. I decided to take my mental health as serious as my body health because my relationships with myself and my family were, I felt, at the bottom of the barrel. I tried many different tactics to pull myself out of my funk, but time, money, and commitments are factors that are fixed. Shopping, alcohol, and endless hours at the gym weren’t going to help my family and sneaking in an hour at Target just wasn’t cutting it.
I tried my hardest to be “the super mom” and I’m happy to say that I failed. My expectations of myself and the expectations others have for mothers is ridiculous.
Depression doesn’t mean that you are in a ball on the floor of your closet sobbing 24/7, though it can be that. There were many moments over the years that I was very happy. But the underlying feeling of being overwhelmed was a constant low vibration within me. Two special needs kids, a husband, a job, a house, family and friends. Pleasing them all didn’t leave any room for taking care of me. And quite frankly, no one else was taking care of me either because I didn’t ask them too. When the help didn’t magically come I thought I wasn’t worthy of their consideration, and deeper I sank into the barrel.
I’ve also felt, and heard from other friends, that admitting you’re on anti-depressants means you are weak and can’t handle things. No it doesn’t. It means that there are stressors in your life that are blocking your brain chemicals and you just need to help re-wire a few things to run more smooth. Depression usually runs in families, whether or not anyone admits to it. And let’s face it, raising special needs kids means you need more help anyway. Our society, and the insistence of independence away from the village, is killing mothers. Moms are the highest ranked group of people in the world of depression, only above divorced dads. So, obviously, you are not weak, you are human. Not super human, but average.
The two medications I’m on are supposed to:
1. Help my brain shut off at night so I can sleep and
2. Even out my moods during the day.
It’s only been one week and I honestly can’t say either is working so far but that is expected. It takes at least a month for the meds to start their best work in your system. I will say that my body has felt like lead, very heavy limbs, for the first few days and I’ve been yawning all day every day but the symptoms are lessening as each day passes. In a funny way, I’ve been so “hung over” that I haven’t cared about much, so perversely the anti-anxiety drugs are working. I’m a bit slower and more easy-going. Always a way to make a silver lining!!
I share this experience with you because I want you to know that you aren’t alone. Hope is there in many different forms. There are many of us out there who can answer your questions and give you support, no matter what you are going through. I will keep you updated on my progress. Take care of the whole you!
Heather
Thursday, July 9, 2009
Better Bellies
Well, after a nice long holiday weekend, it is officially swimsuit time and I can hear the groans from many of you. Not only do you have to pack a billion things (just in case) for a 2 hour stint at the pool, but you need to fit into last year’s suit after a long winter.
Personally I judge myself on whether or not I can see my feet. If my belly is bloated so much I can’t see my toes, I know I need to do a little maintenance ASAP. The secret weapons are….drum roll…….diet and exercise. Okay, Okay, I know, not rocket science, but it’s the kind of diet and exercise that makes all the difference.
Bellies can bloat for many reasons, but two that are overlooked are Celiac Disease and Gluten Intolerance. Celiac Disease and Gluten Intolerance are both on the rise, and according to Natural Health magazine, some experts believe they’re doubling every ten years. Why? It could be from how wheat is being grown and processed. Genetically altering the crops is taking its toll on our digestive systems.
If you have any of these symptoms, you may want to talk to your doctor:
1. Frequent abdominal pain
2. Bloating
3. Bone pain
4. Constipation
5. Diarrhea
6. Fatigue
7. Low moods (even depression)
8. Muscle cramps
Getting tested isn’t a big deal, but you need to do it BEFORE you start eliminating things from your diet so you get true results. The blood test will look to see if you are making auto-antibodies (proteins made by your immune system that attack cells) to gluten. If the blood test is positive, your doctor will want to see if there is any damage that your immune system has done to your intestines. Your intestines absorb nutrients so you want them as healthy as possible.
Celiac Disease = damaged intestines
Gluten Intolerance = no damage, but body can’t break down gluten
I have been told that I have both, so I don’t know which diagnosis is right, but I do know that I need to watch what I eat. My round lower belly isn’t fun and I pay the price for eating things I know I shouldn’t….like the whole weekend over July 4th. Gluten is everywhere! Seriously look at labels for any forms of wheat, rye, barley or triticale. It’s in play-doh, lipsticks, sauces, toothpaste, and many things in boxes and cans. You’d be shocked at how many products use those ingredients as fillers. It’s as bad as high-fructose corn syrup.
But life isn’t all bad. Fruit and veggies are a big GO! I can also have rice, potatoes, corn, soy, tapioca (yeah!), nuts, and a few other grains like buckwheat, millet, and quinoa. You can find tons of stuff at www.celiac.org and www.gluten.net . I also take a probiotic just to help my digestive system get a step up. Am I good every day? NO. I’m a sucker for bread and brownies like everyone else, but I try to limit what I can.
The other thing that really helps is Pilates and Power Yoga (not meditative yoga). Both forms of exercise use your core abdominals intensely….thus moving around everything on the inside to keep it going in the right direction. With both Pilates and Yoga, you must breathe deep and be precise. Controlled movements are key. You will sweat if you are doing it right, and the muscle gain will be tremendous. Cardio has its benefits, but it’s important to give your mind and core some attention as well. Plus, neither of these really needs any equipment when you are starting out.
You can take a class at your community center, check out a book, or rent a video for home. I happen to really like the Windsor Pilates set of videos, but there are many out there to choose from. The three best reasons to take a class are because the instructor will push you farther than you will yourself, you’re more obligated to go since you paid for it, and people are expecting you to show up. When doing workouts at home there is always something that comes up you could be doing instead. But, I completely understand the time and money factors of taking a class, so books and videos are still great opportunities for you to increase your health.
Make this your summer! You are fabulous, beautiful, smart and sexy. You will have a body and mind at the top of your game because you deserve it first, and your family deserves it second. You just can’t put a price on health and happiness. Go for it all!!
Heather
Personally I judge myself on whether or not I can see my feet. If my belly is bloated so much I can’t see my toes, I know I need to do a little maintenance ASAP. The secret weapons are….drum roll…….diet and exercise. Okay, Okay, I know, not rocket science, but it’s the kind of diet and exercise that makes all the difference.
Bellies can bloat for many reasons, but two that are overlooked are Celiac Disease and Gluten Intolerance. Celiac Disease and Gluten Intolerance are both on the rise, and according to Natural Health magazine, some experts believe they’re doubling every ten years. Why? It could be from how wheat is being grown and processed. Genetically altering the crops is taking its toll on our digestive systems.
If you have any of these symptoms, you may want to talk to your doctor:
1. Frequent abdominal pain
2. Bloating
3. Bone pain
4. Constipation
5. Diarrhea
6. Fatigue
7. Low moods (even depression)
8. Muscle cramps
Getting tested isn’t a big deal, but you need to do it BEFORE you start eliminating things from your diet so you get true results. The blood test will look to see if you are making auto-antibodies (proteins made by your immune system that attack cells) to gluten. If the blood test is positive, your doctor will want to see if there is any damage that your immune system has done to your intestines. Your intestines absorb nutrients so you want them as healthy as possible.
Celiac Disease = damaged intestines
Gluten Intolerance = no damage, but body can’t break down gluten
I have been told that I have both, so I don’t know which diagnosis is right, but I do know that I need to watch what I eat. My round lower belly isn’t fun and I pay the price for eating things I know I shouldn’t….like the whole weekend over July 4th. Gluten is everywhere! Seriously look at labels for any forms of wheat, rye, barley or triticale. It’s in play-doh, lipsticks, sauces, toothpaste, and many things in boxes and cans. You’d be shocked at how many products use those ingredients as fillers. It’s as bad as high-fructose corn syrup.
But life isn’t all bad. Fruit and veggies are a big GO! I can also have rice, potatoes, corn, soy, tapioca (yeah!), nuts, and a few other grains like buckwheat, millet, and quinoa. You can find tons of stuff at www.celiac.org and www.gluten.net . I also take a probiotic just to help my digestive system get a step up. Am I good every day? NO. I’m a sucker for bread and brownies like everyone else, but I try to limit what I can.
The other thing that really helps is Pilates and Power Yoga (not meditative yoga). Both forms of exercise use your core abdominals intensely….thus moving around everything on the inside to keep it going in the right direction. With both Pilates and Yoga, you must breathe deep and be precise. Controlled movements are key. You will sweat if you are doing it right, and the muscle gain will be tremendous. Cardio has its benefits, but it’s important to give your mind and core some attention as well. Plus, neither of these really needs any equipment when you are starting out.
You can take a class at your community center, check out a book, or rent a video for home. I happen to really like the Windsor Pilates set of videos, but there are many out there to choose from. The three best reasons to take a class are because the instructor will push you farther than you will yourself, you’re more obligated to go since you paid for it, and people are expecting you to show up. When doing workouts at home there is always something that comes up you could be doing instead. But, I completely understand the time and money factors of taking a class, so books and videos are still great opportunities for you to increase your health.
Make this your summer! You are fabulous, beautiful, smart and sexy. You will have a body and mind at the top of your game because you deserve it first, and your family deserves it second. You just can’t put a price on health and happiness. Go for it all!!
Heather
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