9-24-09
Well, today is Samantha’s 6th birthday and we just finished a birthday breakfast at Panera. When I think back to the beginning of her life I’m amazed at how far she has come. This is our story….
At my 20 week sonogram appointment, the doctor told us that the little girl inside me had very short and bowed limbs. His face, though, told me more – sorrow and regret. Something was very wrong. We were quickly referred to the specialists at St. Luke’s. (In case you’re wondering, an adult cannot deliver a baby at Children’s Mercy, even if the child will need their care right away after birth. Don’t ask me why. I assume because, technically, I’d be a patient too but not under 18.)
At St. Luke’s we had many tests run, an amniocentesis (which does NOT feel like a bee sting!), and high-tech ultrasounds up the wazoo. All to find out that Sami was either going to have Campomelic Dysplasia or Osteogenesis Imperfecta type II. Each time I went in there were more and more breaks of her bowed little bones. With either disease, the doctors told us (7 months into the pregnancy) to make her funeral plans as she wouldn’t live past 24 hours.
Luckily, we have a good friend who is a director of a funeral home. He came over to our house and gently guided us through the process and paperwork. That night was agonizing…feeling Sami kick inside of me while I sat at the dining room table talking over details and procedures. Finally, when the meeting was done, I went upstairs, lay in my son’s bed, and cried while holding him. He was having such a rough time at school and I thought that my sadness and anxiety over Sami must be affecting him. We would find out later that he has Aspergers Syndrome, a high functioning autism, on top of everything else.
As the day of delivery loomed closer, I began to dread it. Sami was safe in my belly, though broken, and I felt as if I was putting her to her death sentence at delivery. How could I do that? It ate at me night and day. I also questioned whether to finish the nursery or not. If we finished it and she died, I’d have to walk by it every day. If we didn’t finish it, it seemed as if we were giving up on her.
The morning of September 24th, nursery completed, Samantha came out wailing, “I’m here, deal with me”. Though I had a major c-section to get her out safely, she was still broken in many spots and healing other fractures all over her little body. We stayed at St. Luke’s for 4 days until a room opened up at Children’s Mercy. Once there it was confirmed that she had OI type III, the most severe a person can live with, instead of the lethal type II.
A new protocol came out of Canada’s Shriner’s Hospital to give children with OI a drug called Pamidronate. What that medicine does is slows the body’s natural tendency to rid itself of bad/old cells. Osteoclasts are in your body eating away at those bad/old bone cells so new, healthy bone can grow. OI is a genetic disease of collagen. Sami doesn’t have enough collagen and what she does have is so poor quality it’s not helpful. But, it’s all she has, so we don’t want the osteoclasts taking it away. The Pamidronate is given through an IV that takes about 4 hours each day, 2 days in a row, to administer. When Sami was an infant, she received treatment every 6 weeks, but now we are down to 16 week increments. Between breaks, appointments, and drug treatments our car could drive itself to the hospital for the first few years.
We also had adjustable rods put in her arms and legs. The first few surgeries didn’t go so well (pins poking out of elbows, YUK!), but now they are great. We found an OI Clinic in Omaha, NE with a fabulous ortho-surgeon that fixed Sami right up…..okay; as good as she can be fixed. The telescoping rods don’t prevent breaking, but do give her bones stability from the inside. Those rods will probably need to be changed out next year.
We still worry about common things like colds – coughing can crack ribs that could puncture lungs, falls, hearing loss – those little bones in your ears can break too, and a million other things for her safety. To be honest, it’s normal for us so we don’t give it much thought until asked about it, or read ‘Handle With Care’ by Jodi Picoult….tough read for me.
Starting Kindergarten brought a lot of Sami’s needed adaptations to the forefront. We built our house for her, but the school had to adapt and it was a challenge to think of all the details throughout her day in school. Kudos to her elementary staff and teachers!!! They bravely walked up to the plate and are doing wonderful.
Samantha is a feisty girl, with sass bigger than her dwarf 3ft frame, a quick mind, and spirit that is contagious. There are many times when we are supposed to be disclipling her and have to leave the room to laugh first. Her determination lets her bear crawl all over the place, take steps with her walker or around furniture and bring out her fashionista by changing clothes five times a day.
Sami is also sensitive. She hates being a dwarf and asks when she will be big like the other girls. Really, the dwarf part can be worked around (except at amusement parks – too short for the kiddie rides) but the brittle bones are what prevents her from doing most activities. It breaks my heart to have to teach her about discrimination from other people so early and hold her while she cries because someone made fun of her. The next OI conference is Aug 2010 in Portland, OR and will be interesting for Sami to connect with other kids who are just like her – not that there are many around the globe – but still she isn’t alone. WWW.OIF.ORG
Luckily, she has an older brother who dislikes her enough to pick on her for no apparent reason and parents who refuse to give in to all her whims…..unlike her grandparents As much as we can, we are mean to our kids (according to them) and make them do chores like all other kids, eat healthy food, limit their TV and computer time, and have good manners. She has friends everywhere we go and was once used in a marketing campaign for the Children’s Hospital in Omaha with her own billboards and magazine ads!
Samantha has taught me so much in these 6 years. How to be humble, how to laugh, how to cry, how to ask for help, when to accept and when to fight, how to take care of myself, how to be a better parent, a better woman. Being a parent to kids with extra needs means patience and creativity, schedules and open minds, good karma and loving yourself….all taught the hard way. I can’t wait to see what they teach me over the next 50 years!!
Heather
Thursday, September 24, 2009
Friday, September 18, 2009
Bones and Immune System Health
Check out this article on bones!!
http://www.extraordinaryhealth.com/EHNewsletter/09172009/tabid/1878/Default.aspx?ContentPubID=509
http://www.extraordinaryhealth.com/EHNewsletter/09172009/tabid/1878/Default.aspx?ContentPubID=509
Thursday, September 10, 2009
Beauty
Even though I work full time all year, when the kids go to school I feel like starting over. I do my resolutions in Sept rather than Jan. This year I want to concentrate on my beauty, inside and out.
Did you know it’s estimated that French women spend one third of their salaries on beauty products and one third on lingerie? Can you imagine spending 2/3 of your salary just on yourself? What a luxury!
Well, I’ve decided that I’m going to make more conscious decisions about the time and money I spend on myself and my appearance. Whether I like it or not, appearance makes a huge difference in my feelings and in other’s perceptions. I’m not decking myself out every single day in formal wear – I work in a warehouse – but moisturizing at night, putting on jewelry, wearing nice panties are all things I can easily do.
Here are some items I’ve discovered that give maximum impact for little effort:
1.Dior’s Show Mascara – Sephora - $24 - Holy cow! My tiny pale lashes are huge with only one coat!
2.Tom’s of Maine toothpaste – $4 - I even buy the strawberry for my kids.
3.Mary Kay’s Eye Make Up Remover – really does take off everything gently, even waterproof mascara that others claim to take off but can’t.
4.Arbonne’s Eye Cream – The miracle of removing “freckles” and “laugh lines”
5.Mary Kay’s Microderm Abrasion set – makes my face smoother than a baby’s butt
6.Victoria Secret Beauty Rush Lip Gloss – 5 for $20 – the favors are fun and I like that I can feel my lips are covered in moisture. I favorite is Cherry Bomb because of the subtle shimmer. My daughter is addicted to the super glossy ones though
7.OPI nail polish – $8 (but get last year’s colors for $4) so many colors and if you do the base, color, and top coats they’ll last for weeks. I love putting crazy colors on my toes.
8.Sally Hansen Insta-Grip for nails – instantly dries every layer!
9.Eddie Bauer T-shirts - $14 – You can get V neck or round; short, ¾, or long sleeves; in a rainbow of colors. These t-shirts look great with jeans, yoga pants, or slacks and keep their strong color through many washings. Dress them up or down, layer them, you just can’t go wrong.
10.Eddie Bauer No Iron button up shirts – $50 - tailored darts give you curves in the right places. Again short, ¾, or long sleeves. Look fabulous wash after wash.
11.Black slacks. Pants are hard to fit women because we are all different sizes so I can’t tell you a For Sure Hit brand that will work for you. You need to find a pair that hang properly straight from the hips so you have a long clean line all the way down to the floor. I like Express if I’m wearing loafers. But I have a dickens of a time finding ones long enough if I want to wear heels.
12.Coldwater Creek wraps - $40 (but they constantly have coupons) – right now they are two toned to get double the fun. These are so wonderful for throwing on in the spring and fall when the air can be chilled but you don’t want a bulky coat. I also love them for movie theatres which seem to always be set at Arctic Chill and my kids can snuggle up in them in the car.
13.Clarks shoes – I’m afraid these are a splurge, but the quality and comfort are amazing. Sandles, mary janes, flats, heels, boots, you name it they all feel good. They aren’t date-night-sexy but steady quality everyday shoes that help you look put together.
14.Silpada jewelry – Sterling silver from casual to sexy. Again, a splurge for quality. Most days I wear the Huggie earrings which are simple thick hoops right at my lobes.
15.French perfume. My favorite is Escada. I received a perfume lesson once that said French perfume makers use the real ingrediants, like rose petals, and not simulated stuff. So the fragrance is more pure and reacts better with your skin. A little bit will last you a long time.
16.Jergens Natural Glow body lotion – $7 - subtly and gradually gives you a warm tan
17.Burt Bee’s – just about everything from head to toe for me and the kids. Royal jelly is supposed to be a Superhero and I can say my skin is nice and firm.
Obviously I’m leaving out inner beauty here, but we’ll catch that one later.
What are some of your favorite things? Share with us and we can all be beautiful.
Did you know it’s estimated that French women spend one third of their salaries on beauty products and one third on lingerie? Can you imagine spending 2/3 of your salary just on yourself? What a luxury!
Well, I’ve decided that I’m going to make more conscious decisions about the time and money I spend on myself and my appearance. Whether I like it or not, appearance makes a huge difference in my feelings and in other’s perceptions. I’m not decking myself out every single day in formal wear – I work in a warehouse – but moisturizing at night, putting on jewelry, wearing nice panties are all things I can easily do.
Here are some items I’ve discovered that give maximum impact for little effort:
1.Dior’s Show Mascara – Sephora - $24 - Holy cow! My tiny pale lashes are huge with only one coat!
2.Tom’s of Maine toothpaste – $4 - I even buy the strawberry for my kids.
3.Mary Kay’s Eye Make Up Remover – really does take off everything gently, even waterproof mascara that others claim to take off but can’t.
4.Arbonne’s Eye Cream – The miracle of removing “freckles” and “laugh lines”
5.Mary Kay’s Microderm Abrasion set – makes my face smoother than a baby’s butt
6.Victoria Secret Beauty Rush Lip Gloss – 5 for $20 – the favors are fun and I like that I can feel my lips are covered in moisture. I favorite is Cherry Bomb because of the subtle shimmer. My daughter is addicted to the super glossy ones though
7.OPI nail polish – $8 (but get last year’s colors for $4) so many colors and if you do the base, color, and top coats they’ll last for weeks. I love putting crazy colors on my toes.
8.Sally Hansen Insta-Grip for nails – instantly dries every layer!
9.Eddie Bauer T-shirts - $14 – You can get V neck or round; short, ¾, or long sleeves; in a rainbow of colors. These t-shirts look great with jeans, yoga pants, or slacks and keep their strong color through many washings. Dress them up or down, layer them, you just can’t go wrong.
10.Eddie Bauer No Iron button up shirts – $50 - tailored darts give you curves in the right places. Again short, ¾, or long sleeves. Look fabulous wash after wash.
11.Black slacks. Pants are hard to fit women because we are all different sizes so I can’t tell you a For Sure Hit brand that will work for you. You need to find a pair that hang properly straight from the hips so you have a long clean line all the way down to the floor. I like Express if I’m wearing loafers. But I have a dickens of a time finding ones long enough if I want to wear heels.
12.Coldwater Creek wraps - $40 (but they constantly have coupons) – right now they are two toned to get double the fun. These are so wonderful for throwing on in the spring and fall when the air can be chilled but you don’t want a bulky coat. I also love them for movie theatres which seem to always be set at Arctic Chill and my kids can snuggle up in them in the car.
13.Clarks shoes – I’m afraid these are a splurge, but the quality and comfort are amazing. Sandles, mary janes, flats, heels, boots, you name it they all feel good. They aren’t date-night-sexy but steady quality everyday shoes that help you look put together.
14.Silpada jewelry – Sterling silver from casual to sexy. Again, a splurge for quality. Most days I wear the Huggie earrings which are simple thick hoops right at my lobes.
15.French perfume. My favorite is Escada. I received a perfume lesson once that said French perfume makers use the real ingrediants, like rose petals, and not simulated stuff. So the fragrance is more pure and reacts better with your skin. A little bit will last you a long time.
16.Jergens Natural Glow body lotion – $7 - subtly and gradually gives you a warm tan
17.Burt Bee’s – just about everything from head to toe for me and the kids. Royal jelly is supposed to be a Superhero and I can say my skin is nice and firm.
Obviously I’m leaving out inner beauty here, but we’ll catch that one later.
What are some of your favorite things? Share with us and we can all be beautiful.
Wednesday, September 2, 2009
Help Me Find Peace
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.
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.
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
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